Subjects -> HEALTH AND SAFETY (Total: 1562 journals)
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    - WOMEN'S HEALTH (82 journals)

HEALTH FACILITIES AND ADMINISTRATION (390 journals)                  1 2 | Last

Showing 1 - 200 of 397 Journals sorted alphabetically
ACI Open     Open Access  
Acta Bioquimica Clinica Latinoamericana     Open Access   (Followers: 1)
Administration and Policy in Mental Health and Mental Health Services Research     Partially Free   (Followers: 22)
Adnan Menderes Üniversitesi Sağlık Bilimleri Fakültesi Dergisi     Open Access   (Followers: 1)
Advanced Healthcare Materials     Hybrid Journal   (Followers: 17)
Advances in Dual Diagnosis     Hybrid Journal   (Followers: 48)
Advances in Human Factors/Ergonomics     Full-text available via subscription   (Followers: 26)
Advances in Medical Education and Practice     Open Access   (Followers: 34)
Advances in Mental Health and Intellectual Disabilities     Hybrid Journal   (Followers: 89)
Advances in Nursing Science     Hybrid Journal   (Followers: 43)
Advances in Simulation     Open Access   (Followers: 7)
African Journal of Primary Health Care & Family Medicine     Open Access   (Followers: 6)
AIDS and Behavior     Hybrid Journal   (Followers: 18)
American Journal of Hospice and Palliative Medicine     Hybrid Journal   (Followers: 48)
American Journal of Managed Care     Full-text available via subscription   (Followers: 13)
Analytical Methods     Full-text available via subscription   (Followers: 14)
Anthropologie et santé     Open Access   (Followers: 5)
Applied Clinical Informatics     Hybrid Journal   (Followers: 5)
Applied Health Economics and Health Policy     Full-text available via subscription   (Followers: 24)
Applied Research in Quality of Life     Hybrid Journal   (Followers: 13)
Archives of Public Health     Open Access   (Followers: 13)
Asian Journal of Health     Open Access   (Followers: 4)
Australasian Journal of Paramedicine     Open Access   (Followers: 7)
Australian and New Zealand Journal of Public Health     Hybrid Journal   (Followers: 17)
Australian Health Review     Hybrid Journal   (Followers: 7)
Australian Journal of Primary Health     Hybrid Journal  
Australian Journal of Rural Health     Hybrid Journal   (Followers: 18)
Autism     Hybrid Journal   (Followers: 350)
Avicenna     Open Access   (Followers: 3)
Balint Journal     Hybrid Journal   (Followers: 2)
Bereavement Care     Hybrid Journal   (Followers: 13)
BJR     Hybrid Journal   (Followers: 21)
BMC Medical Informatics and Decision Making     Open Access   (Followers: 25)
BMC Oral Health     Open Access   (Followers: 7)
BMJ Leader     Hybrid Journal  
BMJ Quality & Safety     Hybrid Journal   (Followers: 69)
BMJ Supportive & Palliative Care     Hybrid Journal   (Followers: 50)
British Journal of Healthcare Assistants     Full-text available via subscription   (Followers: 33)
British Journal of Healthcare Management     Full-text available via subscription   (Followers: 19)
British Journal of Hospital Medicine     Full-text available via subscription   (Followers: 18)
British Journal of Nursing     Full-text available via subscription   (Followers: 297)
British Journal of School Nursing     Full-text available via subscription   (Followers: 14)
Bruce R Hopkins' Nonprofit Counsel     Hybrid Journal   (Followers: 2)
Building Better Healthcare     Full-text available via subscription   (Followers: 1)
Canadian Nurse     Full-text available via subscription   (Followers: 8)
Cardiac Electrophysiology Clinics     Full-text available via subscription   (Followers: 1)
Children and Schools     Hybrid Journal   (Followers: 8)
Chinese Medical Record English Edition     Hybrid Journal  
CIN : Computers Informatics Nursing     Hybrid Journal   (Followers: 11)
Clinical Audit     Open Access   (Followers: 4)
Clinics and Practice     Open Access  
Cognition, Technology & Work     Hybrid Journal   (Followers: 14)
Communication & Medicine     Hybrid Journal   (Followers: 5)
Community Based Medical Journal     Open Access  
Conflict and Health     Open Access   (Followers: 8)
Contemporary Nurse : A Journal for the Australian Nursing Profession     Hybrid Journal   (Followers: 7)
Critical Public Health     Hybrid Journal   (Followers: 26)
Culture, Health & Sexuality: An International Journal for Research, Intervention and Care     Hybrid Journal   (Followers: 17)
Current Opinion in Supportive and Palliative Care     Hybrid Journal   (Followers: 28)
Das Gesundheitswesen     Hybrid Journal   (Followers: 10)
Death Studies     Hybrid Journal   (Followers: 22)
Dental Nursing     Full-text available via subscription   (Followers: 3)
Disaster Health     Hybrid Journal   (Followers: 1)
DoctorConsult - The Journal. Wissen für Klinik und Praxis     Full-text available via subscription  
Droit, Déontologie & Soin     Full-text available via subscription   (Followers: 3)
E-Health Telecommunication Systems and Networks     Open Access   (Followers: 2)
East and Central African Journal of Surgery     Open Access  
Éducation thérapeutique du patient     Full-text available via subscription   (Followers: 1)
eGEMs     Open Access  
Emergency Radiology     Hybrid Journal   (Followers: 10)
Enfermería Clínica     Full-text available via subscription   (Followers: 3)
Epidemiologic Methods     Hybrid Journal   (Followers: 4)
Ergonomics     Hybrid Journal   (Followers: 24)
Escola Anna Nery     Open Access   (Followers: 1)
Ethnicity & Health     Hybrid Journal   (Followers: 15)
European Journal of Public Health     Hybrid Journal   (Followers: 27)
European Journal of Work and Organizational Psychology     Hybrid Journal   (Followers: 35)
European Research in Telemedicine / La Recherche Européenne en Télémédecine     Full-text available via subscription   (Followers: 2)
Evaluation & the Health Professions     Hybrid Journal   (Followers: 11)
Evidence-Based Nursing     Hybrid Journal   (Followers: 74)
Evolution, Medicine, and Public Health     Open Access   (Followers: 12)
Expert Opinion on Therapeutic Patents     Hybrid Journal   (Followers: 12)
Families, Systems, & Health     Full-text available via subscription   (Followers: 9)
Family Practice Management     Full-text available via subscription   (Followers: 5)
Focus on Health Professional Education : A Multi-disciplinary Journal     Full-text available via subscription   (Followers: 7)
Frontiers in Public Health Services and Systems Research     Open Access   (Followers: 5)
Future Hospital Journal     Full-text available via subscription   (Followers: 2)
Gastrointestinal Nursing     Full-text available via subscription   (Followers: 5)
Geron     Full-text available via subscription  
Global & Regional Health Technology Assessment     Open Access   (Followers: 1)
Global Health Action     Open Access   (Followers: 12)
Global Health Management Journal (GHMJ)     Open Access   (Followers: 1)
Global Health Research and Policy     Open Access   (Followers: 4)
Global Journal of Hospital Administration     Open Access   (Followers: 1)
Global Public Health: An International Journal for Research, Policy and Practice     Hybrid Journal   (Followers: 21)
Globalization and Health     Open Access   (Followers: 9)
Handbook of Practice Management     Hybrid Journal   (Followers: 2)
Health     Open Access   (Followers: 5)
Health & Social Care In the Community     Hybrid Journal   (Followers: 54)
Health : An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine     Hybrid Journal   (Followers: 16)
Health and Interprofessional Practice     Open Access   (Followers: 6)
Health and Technology     Hybrid Journal   (Followers: 4)
Health Care Analysis     Hybrid Journal   (Followers: 17)
Health Care Management Review     Hybrid Journal   (Followers: 16)
Health Economics     Hybrid Journal   (Followers: 59)
Health Expectations     Open Access   (Followers: 16)
Health Facilities Management     Free   (Followers: 10)
Health Informatics Journal     Hybrid Journal   (Followers: 28)
Health Information : Jurnal Penelitian     Open Access   (Followers: 5)
Health Information Science and Systems     Open Access   (Followers: 4)
Health Policy and Management     Open Access   (Followers: 7)
Health Policy and Planning     Hybrid Journal   (Followers: 27)
Health Professions Education     Open Access   (Followers: 3)
Health Promotion International     Hybrid Journal   (Followers: 28)
Health Promotion Practice     Hybrid Journal   (Followers: 18)
Health Psychology     Full-text available via subscription   (Followers: 62)
Health Psychology Review     Hybrid Journal   (Followers: 46)
Health Reform Observer : Observatoire des Réformes de Santé     Open Access   (Followers: 2)
Health Research Policy and Systems     Open Access   (Followers: 16)
Health Science Journal of Indonesia     Open Access   (Followers: 2)
Health Services Research and Managerial Epidemiology     Open Access   (Followers: 3)
Health, Risk & Society     Hybrid Journal   (Followers: 14)
Healthcare : The Journal of Delivery Science and Innovation     Full-text available via subscription   (Followers: 1)
Healthcare in Low-resource Settings     Open Access   (Followers: 1)
Healthcare Management Forum     Hybrid Journal   (Followers: 8)
Healthcare Policy / Politiques de Santé     Full-text available via subscription   (Followers: 5)
Healthcare Quarterly     Full-text available via subscription   (Followers: 10)
Healthcare Risk Management     Full-text available via subscription   (Followers: 5)
HealthcarePapers     Full-text available via subscription   (Followers: 2)
Hispanic Health Care International     Full-text available via subscription  
História, Ciências, Saúde - Manguinhos     Open Access   (Followers: 2)
Hong Kong Journal of Social Work, The     Hybrid Journal   (Followers: 3)
Hospital     Open Access   (Followers: 3)
Hospital a Domicilio     Open Access  
Hospital Medicine Clinics     Full-text available via subscription   (Followers: 2)
Hospital Peer Review     Full-text available via subscription   (Followers: 1)
Hospital Pharmacy     Partially Free   (Followers: 18)
Hospital Practice     Hybrid Journal   (Followers: 2)
Hospital Practices and Research     Open Access  
Housing, Care and Support     Hybrid Journal   (Followers: 9)
Human Factors : The Journal of the Human Factors and Ergonomics Society     Full-text available via subscription   (Followers: 39)
Human Resources for Health     Open Access   (Followers: 12)
ICU Director     Hybrid Journal  
Ids Practice Papers     Hybrid Journal  
IEEE Pulse     Hybrid Journal   (Followers: 5)
IISE Transactions on Healthcare Systems Engineering     Hybrid Journal   (Followers: 2)
Independent Nurse     Full-text available via subscription   (Followers: 3)
Index de Enfermeria     Open Access   (Followers: 7)
Indian Journal of Public Health     Open Access   (Followers: 1)
Informatics for Health and Social Care     Hybrid Journal   (Followers: 10)
Innovation and Entrepreneurship in Health     Open Access   (Followers: 1)
INQUIRY : The Journal of Health Care Organization, Provision, and Financing     Open Access   (Followers: 1)
Interface - Comunicação, Saúde, Educação     Open Access   (Followers: 1)
International Archives of Health Sciences     Open Access  
International Journal for Equity in Health     Open Access   (Followers: 9)
International Journal for Quality in Health Care     Hybrid Journal   (Followers: 41)
International Journal of Care Coordination     Hybrid Journal   (Followers: 7)
International Journal of Computers in Healthcare     Hybrid Journal   (Followers: 3)
International Journal of Electronic Healthcare     Hybrid Journal   (Followers: 2)
International Journal of Environmental Research and Public Health     Open Access   (Followers: 27)
International Journal of Health Administration and Education Congress (Sanitas Magisterium)     Open Access  
International Journal of Health Care Quality Assurance     Hybrid Journal   (Followers: 15)
International Journal of Health Economics and Management     Hybrid Journal   (Followers: 12)
International Journal of Health Governance     Hybrid Journal   (Followers: 27)
International Journal of Health Planning and Management     Hybrid Journal   (Followers: 6)
International Journal of Health Sciences Education     Open Access   (Followers: 2)
International Journal of Health Services Research and Policy     Open Access   (Followers: 1)
International Journal of Health System and Disaster Management     Open Access   (Followers: 3)
International Journal of Healthcare     Open Access   (Followers: 1)
International Journal of Healthcare Technology and Management     Hybrid Journal   (Followers: 7)
International Journal of Hospital Research     Open Access  
International Journal of Human Factors and Ergonomics     Hybrid Journal   (Followers: 20)
International Journal of Human Rights in Healthcare     Hybrid Journal   (Followers: 5)
International Journal of Medicine and Public Health     Open Access   (Followers: 6)
International Journal of Migration, Health and Social Care     Hybrid Journal   (Followers: 12)
International Journal of Occupational and Environmental Medicine, The     Open Access   (Followers: 16)
International Journal of Palliative Nursing     Full-text available via subscription   (Followers: 32)
International Journal of Positive Behavioural Support     Full-text available via subscription   (Followers: 38)
International Journal of Prisoner Health     Hybrid Journal   (Followers: 14)
International Journal of Privacy and Health Information Management     Full-text available via subscription   (Followers: 3)
International Journal of Public and Private Healthcare Management and Economics     Full-text available via subscription   (Followers: 4)
International Journal of Qualitative Studies on Health and Well-Being     Open Access   (Followers: 22)
International Journal of Reliable and Quality E-Healthcare     Full-text available via subscription   (Followers: 1)
International Journal of Research in Nursing     Open Access   (Followers: 12)
International Journal of Technology Assessment in Health Care     Hybrid Journal   (Followers: 16)
International Journal of Telemedicine and Clinical Practices     Hybrid Journal   (Followers: 5)
International Journal of Telework and Telecommuting Technologies     Full-text available via subscription  
International Journal of Therapy and Rehabilitation     Full-text available via subscription   (Followers: 42)
International Journal of User-Driven Healthcare     Full-text available via subscription   (Followers: 1)
International Journal on Disability and Human Development     Hybrid Journal   (Followers: 23)
Irish Journal of Paramedicine     Open Access   (Followers: 3)
JAAPA     Hybrid Journal   (Followers: 3)
Jaffna Medical Journal     Open Access  
Joint Commission Journal on Quality and Patient Safety     Hybrid Journal   (Followers: 41)
Journal for Healthcare Quality     Hybrid Journal   (Followers: 28)
Journal of Advanced Nursing     Hybrid Journal   (Followers: 252)
Journal of Advances in Medical Education & Professionalism     Open Access   (Followers: 10)
Journal of Aging and Health     Hybrid Journal   (Followers: 27)
Journal of Ambulatory Care Management, The     Hybrid Journal   (Followers: 4)
Journal of Applied Arts and Health     Hybrid Journal   (Followers: 1)

        1 2 | Last

Similar Journals
Journal Cover
American Journal of Hospice and Palliative Medicine
Journal Prestige (SJR): 0.65
Citation Impact (citeScore): 1
Number of Followers: 48  
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1049-9091 - ISSN (Online) 1938-2715
Published by Sage Publications Homepage  [1149 journals]
  • Physician Palliative Education Associated With High Use of Hospice Care
    • Authors: Mei-Hsing Chuang, Fang-Niarn Lee, Yih-Tsong Shiau, Hsiu-Yi Shen, Chih-Ching Lee, Saint Shiou-Sheng Chen, Sheng-Jean Huang
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Taiwan’s National Health Insurance provides coverage for palliative and hospice care. The following 10 types of diseases have been added to the National Health Insurance reimbursement regulation: end-stage cancer, motor neuron disease, organic psychosis, brain degeneration, heart failure, chronic airway obstruction diseases, other lung diseases, chronic liver disease and cirrhosis, acute renal failure, and chronic renal failure.Objective:This study aimed to determine the association between physicians’ palliative education and use of hospice care in hospitalized patients at the end of life.Design and Setting:A cross-sectional study in a Taipei community hospital.Participants:Patients who died between 2014 and 2019 were identified. The deceased had at least 1 of the 10 diseases covered by health insurance were included. Hospice care services included hospice ward care and hospice shared care. This study included 2,661 individuals. In total, 972 (36.5%) patients used hospice care services.Results:After adjusting for age, gender, and comorbidities, physicians’ palliative education was found to significantly associated with the use of hospice care (OR: 14.38, 95% CI: 10.90-18.98).Conclusions:Physicians’ palliative education was found to be an independent factor associated with higher use of hospice care. The findings suggest increasing palliative and hospice education among physicians so that they can ensure that their patients have high-quality end-of-life medical care in an aging society.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-07T09:15:07Z
      DOI: 10.1177/10499091211014160
  • Olfactory Distraction for Management of Nausea in Palliative Care Patients
    • Authors: Antonio Gabriel De Leon Corona, Jessica Chin
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Nausea is one of the most common and debilitating symptoms Palliative Care patients experience. This can be caused by the life-limiting illness itself, its complications, or its treatments. While there are many options for management, including anti-emetics and motility agents, patients may develop refractory nausea or even intolerance to these treatments. Drug interactions, sedation, extrapyramidal effects, serotonin syndrome, and prolonged QT intervals with risk factors for Torsades de Pointes may all preclude use of these medications. Olfactory distraction using alcohol swabs has supporting literature in the emergency care setting as a means of alleviating nausea in a safe and effective way. We present a case series of 3 patients admitted to a Northwell facility who were referred to the Palliative Care consult service for severe nausea. The patients had nausea of varying etiology and were successfully managed with inhalation of alcohol swabs. This is the first case series that looks into applying this intervention to the Palliative Care population as an easy-to-use, readily-available, and safe method to manage nausea.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-06T09:39:04Z
      DOI: 10.1177/10499091211015957
  • Complicated Grief, Depression and Post-Traumatic Stress Symptoms Among
           Bereaved Parents following their Child’s Death in the Pediatric
           Intensive Care Unit: A Follow-Up Study
    • Authors: Markita Suttle, Mark W. Hall, Murray M. Pollack, Robert A. Berg, Patrick S. McQuillen, Peter M. Mourani, Anil Sapru, Joseph A. Carcillo, Emily Startup, Richard Holubkov, J. Michael Dean, Daniel A. Notterman, Kathleen L. Meert
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Parents often suffer reduced mental health after their child’s death; however, the trajectory and risk factors are not well described.Objective:Describe the change in complicated grief, depression, and post-traumatic stress symptoms among parents between 6 and 13 months after their child’s death in a pediatric intensive care unit (PICU), and factors associated with 13-month symptoms.Methods:Parents whose children died in 1 of 8 PICUs affiliated with the Collaborative Pediatric Critical Care Research Network completed surveys 6 and 13 months after their child’s death. Surveys included the Inventory of Complicated Grief (ICG), the Patient Health Questionnaire-8 (PHQ-8) for depression, and the Short Post-Traumatic Stress Disorder Rating Interview (SPRINT). Parents provided sociodemographics. Charts were reviewed for child characteristics.Results:One-hundred and fifty seven parents of 104 deceased children completed surveys at both time points. Mental health symptoms declined over time (mean (SD)): ICG (33.8 (15.4) vs. 30.5 (15.2), p < 0.001), PHQ-8 (9.0 (6.4) vs. 7.3 (5.8), p < 0.001), and SPRINT (14.1 (8.3) vs. 12.0 (8.2), p < 0.001). After controlling for 6-month scores, higher 13-month ICG was independently associated with sudden unexpected death; higher PHQ-8 with Black race, insecure attachment style, and sudden unexpected death; and higher SPRINT with having a high school level of education (compared to college degree or higher).Conclusion:Mental health symptoms improve among parents during the first 13 months after their child’s death; however, symptoms persist for many. Black parents and those whose children die suddenly may be high risk for poor adjustment during bereavement.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-05T09:40:44Z
      DOI: 10.1177/10499091211015913
  • Planning for End of Life
    • Authors: Natasha Ansari, Eric Johnson, Jennifer A. Sinnott, Sikandar Ansari
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Oncology provider discussions of treatment options, outcomes of treatment, and end of life planning are essential to care for patients with advanced malignancies. Studies have shown that despite this, many patients do not have adequate care planning, including end of life planning. It is thought that the accessibility of information outside of clinical encounters and individual factors and/or beliefs may influence the patient’s perception of disease.Aims:The objective of this study was to evaluate if patient understanding of treatment goals matched the provider and if there were areas of discrepancy. If a discrepancy was found, the survey inquired further into more specific aspects.Methods:A questionnaire-based survey was performed at a cancer hospital outpatient clinic. 100 consecutive and consenting patients who had stage IV non-curable lung, gastrointestinal (GI), or other cancer were included in the study. Patients must have had at least 2 visits with their oncologist.Results:40 patients reported their disease might be curable and 60 reported their disease was not curable. Patients who reported their disease was not curable were more likely to be 65 years or older (P-value: 0.055). They were more likely to report that their doctor discussed the possibility of their cancer getting worse (78.3% VS 55%; P-value 0.024), that their doctor discussed end of life plans (58.3% VS 30%; P- value: 0.01), and that they had appointed a health care decision-maker (86.7% VS 62.5%; P-value: 0.01). 65% of patients who thought their disease might be curable reported that their doctor said it might be curable, compared with only 6.7% of patients who thought their disease was not curable (p < 0.001). Or, equivalently, 35% of patients who thought their disease might be curable reported that their doctor’s opinion was that it was not curable, compared with 93% of patients who thought their disease was not curable (p < 0.001). Patients who had lung cancer were more likely to believe their cancer was not curable than patients with gastrointestinal or other cancer, though the difference was not statistically significant (p = 0.165). Patients who said their disease might be curable selected as possible reasons that a miracle (50%) or alternative medicine (66.7%) would get rid of the cancer, or said their family wanted them to believe the cancer would go away (16.7%) or that another doctor said it would (4.2%). Patients who said their disease might be curable said they did so due to alternative medications, another doctor, or their family. Restricting to the 70 patients who reported their doctors telling them their disease was not curable, 20% of them still said that they personally felt their disease might be curable. Patients below 65 years of age were more likely to disagree with the doctor in this case (P-value: 0.047).Conclusion:This survey of patients diagnosed with stage IV cancer shows that a significant number of patients had misunderstandings of the treatment and curability of their disease. Findings suggest that a notable proportion kept these beliefs even after being told by treating physicians that their disease is not curable.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-04T09:53:42Z
      DOI: 10.1177/10499091211014166
  • Bereaved Informal Caregivers Rarely Recall a Relationship Between
           Transfusions and Hospice in Acute Myeloid Leukemia
    • Authors: Larry D. Cripe, Ann H. Cottingham, Caroline E. Martin, Mary Lynn Hoffmann, Katherine Sargent, Layla B. Baker
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Aims:The inability to prescribe blood transfusions is a potential barrier to timely hospice enrollment for patients with blood cancers. The benefits and harms of transfusions near the end of life (EOL), however, are poorly characterized and patients’ preferences are unknown. We sought to characterize the recollections of bereaved caregivers about the relationships between transfusions and hospice enrollment decisions.Methods:We recruited 18 bereaved caregivers of 15 decedents who died within 6-18 months of the interview. Interviews focused on caregivers’ recollections of transfusion and hospice enrollment decisions. Transcripts were analyzed for themes.Results:We identified 2 themes. First, caregivers described that transfusions were necessary and the decisions to receive transfusions or not were deferred to the clinicians. Second, only 1 caregiver recalled transfusions as relevant to hospice decisions. In that instance there was a delay. Caregivers identified difficulties recognizing death was imminent, hope for miracles, and the necessity of accepting life was ending as more relevant barriers.Conclusions:The results indicate clinicians’ beliefs in transfusion at EOL may be a more relevant barrier to hospice enrollment than patients’ preferences. Strategies to evaluate accurately and discuss the actual benefits and harms of transfusions at the EOL are necessary to advise patients and integrate their preferences into decisions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-30T06:39:23Z
      DOI: 10.1177/10499091211013290
  • Quality of Life for Older Cancer Patients: Relation of Psychospiritual
           Distress to Meaning-Making During Dignity Therapy
    • Authors: Susan Bluck, Emily L. Mroz, Diana J. Wilkie, Linda Emanuel, George Handzo, George Fitchett, Harvey Max Chochinov, Carma L. Bylund
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Nearly 500,000 older Americans die a cancer-related death annually. Best practices for seriously ill patients include palliative care that aids in promoting personal dignity. Dignity Therapy is an internationally recognized therapeutic intervention designed to enhance dignity for the seriously ill. Theoretically, Dignity Therapy provides opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested.Aim:The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy.Design:Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions.Participants:Twenty-five outpatients (M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited.Results:Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1—12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress (r = .46), greater spiritual distress (r = .44), and lower quality of life (r = -.56).Conclusion:Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-30T06:38:05Z
      DOI: 10.1177/10499091211011712
  • Grief in Medical Students: The Short and Long-Term Impacts on Health and
    • Authors: Meghan J. Price, Lucas P. Wachsmuth, Kortni A. Ferguson, Gregg A. Robbins-Welty, Paul A. Riordan, Carl F. Pieper, Anthony Galanos
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Healthcare workers often experience grief stemming from the loss of patients under their care. The impact of personal grief on healthcare workers’ wellbeing is less well described, particularly for trainees. To better characterize the prevalence and impact of personal grief on the mental and physical health of medical students, we conducted a survey of medical students at our institution.Methods:An electronic Qualtrics survey was distributed to all currently enrolled medical students at our institution. After an initial question screening for loss before or during medical school, our survey assessed (1) basic demographic data; (2) relationship to the deceased; (3) impact of the loss on trainee health; and (4) utilization of institutional supports for grief.Results:A total of 344 (68.8%) students responded to our survey. Two hundred and 25 (65.4%) students had experienced personal loss prior to or during medical school. 53.7% experienced more than 1 loss, with most of these losses (62.5%) occurring more than 2 years prior to the survey date. Up to 40% of respondents reported at least 1 psychologically distressing symptom that persisted beyond 1 year. Most students (93.8%) relied on family members for support; however, 23.2% of students indicated they would use institutional resources if available.Conclusion:Most medical students have experienced bereavement before or during medical school, which has had significant impact on their well-being. While medical students did not typically utilize institutionally based resources, many students expressed interest in such resources.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-29T07:02:06Z
      DOI: 10.1177/10499091211011722
  • Lean Into the Uncomfortable: Using Trauma-Informed Care to Engage in
           Shared Decision-Making With Racial Minorities With Hematologic
    • Authors: Natasha Dhawan, Thomas W. LeBlanc
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Discussions involving racial health disparities must include pathways for engaging in shared decision-making with racial/ethnic minorities. Research demonstrates glaring racial and ethnic disparities when it comes to hematologic malignancies from the time of diagnosis to treatment and even at the end of life. Unfortunately, decision-making in these circumstances may be streamlined, given the urgency of the disease, prognostic uncertainty, and varying treatment options. Being diagnosed with cancer is undoubtedly a traumatic experience and a patient’s race and/or ethnicity add an important dimension to their experience. The tenets of trauma-informed care (TIC) are anchored in recognizing that trauma can manifest in several ways and acknowledging the impact of past trauma on a patient’s present and future behaviors. We argue that using a TIC approach may help hematologists create a space for decision-making while minimizing the risk of re-traumatization and perpetuating racial disparities. Using the foundation of TIC, an interprofessional team can begin addressing manifestations of trauma and hopefully mitigate racial and ethnic disparities.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-29T07:01:27Z
      DOI: 10.1177/10499091211008431
  • Examining Barriers and Facilitators to Palliative Care Access in Rural
           Areas: A Scoping Review
    • Authors: Yun Cai, Lalani Nasreen
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Despite the growth of palliative care (PC), access to PC remains challenging for rural Americans living with chronic diseases. Given the demand and benefits of PC, a comprehensive view of PC access would inform policymakers in developing PC services in rural areas.Objective:This scoping review aimed to understand the barriers and facilitators to PC access in rural areas from the voices of service users and service providers during the past decade.Methods:A scoping literature review was conducted from 2010 to 2020 using MEDLINE, CINAHL, and PsychINFO databases. Results: Twenty-eight studies met inclusion criteria. Barriers to PC access in rural areas mostly arose in structural issues: (1) the inadequate knowledge and awareness of PC among both service users and providers and (2) the poorly structured PC system. Other barriers included communication gaps/challenges between providers and patients/families and cultural barriers. The facilitators mainly originated in patients/families’ connectedness with local providers and with other social networks such as friends.Conclusions:These findings highlight the need for funding support to increase provider competency, service availability and accessibility, and the public knowledge and awareness of PC in rural areas. A holistic and tailored PC model that standardizes care delivery, referral and coordination, including family caregiver support programs, can improve care access. Future practice and research are warranted to implement and evaluate innovative approaches, such as a coordinated community-based approach, to the successful integration of PC in rural communities.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-28T07:33:24Z
      DOI: 10.1177/10499091211011145
  • Exploratory Study of Advance Care Discussions Among Chinese American and
           White Stage IV Cancer Patients at an American Tertiary Medical Center
    • Authors: Avery Caz Glover, Courtney Schroeder, Emma Ernst, Tamara Vesel
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Timely advance care discussions are essential components of quality care for diverse populations; however, little is known about these conversations among Chinese American cancer patients. This exploratory study describes differences in advance care discussions and planning between Chinese American and White advanced cancer patients.Methods:We collected data for 63 Chinese American and 63 White stage IV cancer patients who died between 2013 and 2018. We compared: frequency and timing of prognosis, goals of care (GOC), and end-of-life care (EOLC) discussions in the final year of life; family inclusion in discussions; healthcare proxy (HCP) identification; do not resuscitate (DNR) order, do not intubate (DNI) order, and other advance directive (AD) completion. We did not conduct statistical tests due to the study’s exploratory nature.Results:Among Chinese American and White patients, respectively, 76% and 71% had prognosis, 51% and 56% had GOC, and 89% and 84% had EOLC discussions. Prognosis, GOC, and EOLC discussions were held a median of 34.0, 15.5, and 34.0 days before death among Chinese American and 17.0, 13.0, and 24.0 days before death among White patients. Documentation rates among Chinese American and White patients were 79% and 76% for DNRs, 81% and 71% for DNIs, 79% and 81% for HCPs, and 52% and 40% for other ADs.Conclusions:Findings suggest that Chinese Americans had similar rates of advance care discussions, completed conversations earlier, and had similar to higher rates of AD documentation compared to White patients. Further studies are needed to confirm our preliminary findings.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-26T08:21:04Z
      DOI: 10.1177/10499091211012614
  • Reluctance to Accept Palliative Care and Recommendations for Improvement:
           Findings From Semi-Structured Interviews With Patients and Caregivers
    • Authors: Valeria Cardenas, Anna Rahman, Yujun Zhu, Susan Enguidanos
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care.Aim:To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers.Design:We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care.Setting/Participants:Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone.Results:Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly.Conclusion:Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-26T08:20:25Z
      DOI: 10.1177/10499091211012605
  • Characteristics of Provider-Focused Research on Complementary and
           Integrative Medicine in Palliative Care: A Scoping Review
    • Authors: Anurag Ratan Goel, Hana Elhassan, Melissa Patterson, M. Carrington Reid
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The use of complementary and integrative medicine (CIM) continues to grow in palliative care. While research supports the use of many CIM therapies for symptom relief, the scope of provider-focused research on CIM remains poorly characterized.Objectives:We conducted a scoping review to characterize provider-focused research on CIM in palliative care in order to map existing evidence and identify knowledge gaps.Methods:We developed a protocol outlining the study population, concept, and context; then used a validated approach per the JBI manual and searched MEDLINE, EMBASE, CINAHL, and AMED.Results:We identified 34 studies that were conducted primarily in the US (n = 9) and UK (n = 6), focused mostly on nurse (n = 29) and physician (n = 22) providers, and employed questionnaires (n = 16) or qualitative (n = 15) methods. Studies investigated 58 CIM modalities, including massage (n = 13), music therapy (n = 12), and aromatherapy (n = 10), to address common symptoms including pain (n = 17), fatigue (n = 6), and nausea/vomiting (n = 6). Study outcomes included perceived benefits of CIM (n = 17) and types of CIM modalities that providers offer (n = 15). Uncommonly studied phenomena included referral patterns (n = 4), facilitators of provider recommendation of CIM (n = 3), and rates of CIM use (n = 3).Conclusion:Provider-focused research on CIM in palliative care can expand its scope by addressing perspectives of interdisciplinary providers, examining CIM modalities that patients report using, addressing symptoms commonly encountered in palliative care, and researching provider-use-focused outcomes. We identify these possibilities for future studies in addition to opportunities for systematic investigations to enhance the safe and efficacious delivery of CIM in the palliative care setting.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-23T07:14:31Z
      DOI: 10.1177/10499091211011708
  • Finding Your Voice
    • Authors: Ariane Lewis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Despite being cognitively intact, patients with Guillain Barre Syndrome are often unable to communicate. Because of this, goals-of-care decisions may need to be made by family members/surrogates. Here, I describe a patient with Guillain Barre Syndrome whose voice was initially stifled by dysarthria, then hypophonia, then intubation, but who ultimately managed to express herself and convey her wishes regarding goals-of-care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-22T07:42:26Z
      DOI: 10.1177/10499091211012610
  • Help Me Understand: Providing Palliative Care to Individuals With Serious
           Mental Illness
    • Authors: Kate L. M. Hinrichs, Cindy B. Woolverton, Jordana L. Meyerson
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-20T07:30:07Z
      DOI: 10.1177/10499091211010722
  • Suffering and Symptoms At the End of Life in ICU Patients Undergoing Renal
           Replacement Therapy
    • Authors: Sarah J. Ramer, Martin Viola, Paul K. Maciejewski, M. Carrington Reid, Holly G. Prigerson
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:We know little about the end-of-life suffering and symptoms of intensive care unit (ICU) decedents in general and those who undergo renal replacement therapy (RRT) in particular.Objectives:To examine differences in end-of-life suffering and various symptoms’ contribution to suffering between ICU decedents who did not undergo RRT, those who underwent RRT for end-stage kidney disease (ESKD), and those who underwent RRT for acute kidney injury (AKI).Methods:This is a cross-sectional study conducted at a quaternary-level referral hospital September 2015-March 2017. Nurses completed interviews about ICU patients’ suffering and symptoms in their final week. We dichotomized overall suffering into elevated and non-elevated and each symptom as contributing or not to a patient’s suffering.Results:Sixty-four nurses completed interviews on 165 patients. Median patient age was 67 years (interquartile range 57, 78); 41% were female. In a multivariable model, undergoing RRT for AKI (odds ratio [OR] 2.95, 95% confidence interval [CI] 1.34-6.49) was significantly associated with elevated suffering compared to no RRT; undergoing RRT for ESKD was not. Adjusting for length of stay, AKI-RRT patients were more likely than non-RRT patients to have fecal incontinence (OR 2.21, 95% CI 1.00-4.93), painful broken skin (OR 2.41, 95% CI 1.14-5.12), and rashes (OR 3.61, 95% CI 1.35-9.67) contributing to their suffering.Conclusions:Undergoing RRT for AKI was associated with elevated suffering in the last week of life in ICU decedents. Painful broken skin, rashes, and fecal incontinence were more likely to contribute to suffering in AKI-RRT patients than in non-RRT patients. How to reduce suffering associated with AKI-RRT in ICU patients merits further study.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-08T08:00:16Z
      DOI: 10.1177/10499091211005707
  • Scalable Model for Delivery of Inpatient Palliative Care During a Pandemic
    • Authors: Ebru Kaya, Warren Lewin, David Frost, Breffni Hannon, Camilla Zimmermann
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:During the COVID-19 pandemic, hospitals worldwide have reported large volumes of patients with refractory symptoms and a large number of deaths attributable to COVID-19. This has led to an increase in the demand for palliative care beyond what can be provided by most existing programs. We developed a scalable model to enable continued provision of high-quality palliative care during a pandemic for hospitals without a palliative care unit or existing dedicated palliative care beds.Methods:A COVID-19 consultation service working group (CWG) was convened with stakeholders from palliative care, emergency medicine, critical care, and general internal medicine. The CWG connected with local palliative care teams to ensure a coordinated response, and developed a model to ensure high-quality palliative care provision.Results:Our 3-step scalable model included: (1) consultant model enhanced by virtual care; (2) embedded model; and (3) cohorted end-of-life unit for COVID-19 positive patients. This approach was enabled through tools and resources to ensure specialist palliative care capacity and rapid upskilling of all clinicians to deliver basic palliative care. Enabling tools and resources included a triage tool for in-person versus virtual care, new medication order sets and guidelines to facilitate prescribing for common symptoms, and lead advance care planning and goals of care discussions. A redeployment plan of generalist physicians and psychiatrists was created to ensure seamless provision of serious illness care.Conclusion:This 3-step, scalable approach enables rapid upscaling of palliative care in collaboration with generalist physicians, and may be adapted for future pandemics or natural disasters.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-07T08:23:40Z
      DOI: 10.1177/10499091211005701
  • Examining the Characteristics of Patients With Non-Malignant Lung Disease
           at the Time of Referral to An Inter-Professional Supportive Care Clinic
    • Authors: Kristen M. Reipas, Daphna L. Grossman, Karen Lock, Valerie B. Caraiscos
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Patients with non-malignant, advanced lung diseases (NMALD), such as chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD), experience a high symptom burden over a prolonged period. Involvement of palliative care has been shown to improve symptom management, reduce hospital visits and enhance psychosocial support; however, optimal timing of referral is unknown.Objective:The aim of this study was to identify the stage in the illness trajectory that patients with NMALD are referred to an ambulatory palliative care clinic.Methods:A retrospective chart review was conducted on all patients with NMALD who attended a Supportive Care Clinic (SCC) between March 1, 2017 and March 31, 2019.Results:Thirty patients attended the SCC during the study period. The most common diagnoses included COPD (36.7%), ILD (36.7%), and bronchiectasis (3.3%). At the time of initial consultation, the majority (89.4%) had Medical Research Council (MRC) class 4-5 dyspnea, however, only 1 patient had been prescribed opioids for management of breathlessness. Twenty-six patients had advance care planning discussions in the SCC. Phone appointments were a highly utilized feature of the program as patients had difficulty attending in-person appointments due to frailty and dyspnea. One-half of patients had at least 1 disease-related hospital admission in the previous year. Six patients were referred directly to home palliative care at their initial consultation.Conclusions:Referral to palliative care often occurs at late stages in non-malignant lung disease. Further, opioids for the management of dyspnea are significantly underutilized by non-palliative providers.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-07T08:23:01Z
      DOI: 10.1177/10499091211005698
  • Shared Death Experiences: A Little-Known Type of End-of-Life Phenomena
           Reported by Caregivers and Loved Ones
    • Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Anecdotal evidence suggests that some loved ones and caregivers of dying patients undergo a type of end-of-life phenomena known as a shared death experience or SDE, whereby one feels that one has participated in a dying person’s transition to a post-mortem existence. Anecdotal evidence also suggests that SDEs can have a range of profound psycho-spiritual-emotional effects. However, SDEs have been all but ignored in hospice and palliative medicine, leaving professional bereavement services uninformed about SDEs and leaving individuals who report SDEs without adequate professional support to process and integrate them. To better understand the features and effects of SDEs, an inductive content analysis was performed on written accounts and transcripts of semi-structured interviews with 107 persons reporting a total of 164 SDEs. Analysis revealed 4 distinct though non-exclusive modes of an SDE: remotely sensing a death, witnessing unusual phenomena, feelings of accompanying the dying, and feelings of assisting the dying. Analysis also revealed 3 major domains of SDE effects: changes in belief, the reconciliation of grief, and the perception of continued relational bonds with the deceased. Interviews highlighted both difficulties and therapeutic value in people openly discussing their experiences with health professionals. We believe that integration of information about SDEs offers an opportunity to add to the breadth and quality of psychological, spiritual, and bereavement care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-05T07:47:58Z
      DOI: 10.1177/10499091211000045
  • Ethics Roundtable: Autonomy and Delusion
    • Authors: Steven J. Baumrucker, Hannah Gersch, Heather Holland, Angela Eastridge, Matt Stolick, Gregg VandeKieft, Eddy R. Smith
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-01T09:14:10Z
      DOI: 10.1177/10499091211004492
  • Oral Health in Adult Patients Receiving Palliative Care: A Mixed Method
    • Authors: Xi Chen, Violet D’Souza, Timothy A Thomsen, Stephanie Gilbertson-White, Jirakate Madiloggovit, Chandler Pendleton, Arshi Munjal, Xie Xianjin
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Oral disease is highly prevalent in persons receiving palliative care (PRPC). Yet, little is known about how PRPC perceive their oral health status and related treatment needs.Methods:This mixed-method study included 49 English-speaking PRPC (age≥18) recruited from the University of Iowa Palliative Care Clinic. Participants first completed a structured review of oral symptoms, followed by an oral exam. A nested sample of 11 participants also completed a semi-structured, in-depth interview querying their perceived oral health concerns and related treatment needs. Quantitative and qualitative data was analyzed and integrated for interpretation.Results:Participants averaged 58.4 years. Nearly 70% had terminal cancer and 25% had advanced organ failure. Eighty-six percent of participants reported at least one oral symptom, including dry mouth (83.7%), a pain-related symptom (40.8%), or oral function difficulties (51.0%). Among the 31 dentate participants, 52% had untreated decayed/broken teeth and 33.3% had oral soft tissue lesions. Ill-fitting dentures and denture sores were common among denture users. About 40% of participants reported compromised health and/or quality of life due to oral conditions; however, the perceived impacts were modest. With the exception of painful conditions, oral treatment was not a priority for most of the participants.Conclusion:Oral disease was highly prevalent in PRPC, yet its overall impact was modest. In the absence of painful symptoms, most participants reported limited desire to seek treatment for oral health conditions. However, given the serious impacts of untreated oral diseases, oral healthcare decision should not be based solely on self-reported symptoms or distress.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-01T09:09:34Z
      DOI: 10.1177/10499091211007449
  • Frequency and Symptomatology of Hiccups in Patients With Cancer: Using an
           On-Line Medical Community to Better Understand the Patient Experience
    • Authors: Christopher Ehret, Colleen Young, Christine J. Ellefson, Lee A. Aase, Aminah Jatoi
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Cancer patients are at risk for hiccups, but the incidence and impact on quality of life are unclear.Methods:A survey (modified from the Functional Living Index with the inclusion of qualitative elements) was developed and launched on an 80,000-member medical social media platform, Mayo Clinic Connect 213 respondents, 34 (16%; 95% CI: 11, 22%) reported “yes” that they had experienced hiccups with cancer therapy. Of those patients who reported hiccups, only 12 (35%) were men, and most were older than 50 years of age. Over 25% noted that hiccups occurred frequently around the time of cancer therapy; 30% described that hiccups interfered with their leisure or recreational activities; and over 15% described hiccups interfered with their ability to enjoy a meal. A few patients seemed to express frustration with hiccups with comments such as, “Totally uncontrollable,” “It’s extremely pain[ful] with throat cancer,” and “Once I had them bad. Almost choked.”Conclusion:Hiccups occur in16% of patients who are receiving cancer therapy and, by our estimates and extrapolation, appear highly problematic in approximately 5%.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-01T09:08:27Z
      DOI: 10.1177/10499091211006923
  • Preparedness to Face the COVID-19 Pandemic in Hospice and Palliative Care
           Services in the Asia-Pacific Region: A Rapid Online Survey
    • Authors: Cheng-Pei Lin, Sabah Boufkhed, Yoshiyuki Kizawa, Masanori Mori, Ednin Hamzah, Ghauri Aggarwal, Eve Namisango, Irene J. Higginson, Cynthia Goh, Richard Harding
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Hospice and palliative care services provision for COVID-19 patients is crucial to improve their life quality. There is limited evidence on COVID-19 preparedness of such services in the Asia-Pacific region.Aim:To evaluate the preparedness and capacity of hospice and palliative care services in the Asia-Pacific region to respond to the COVID-19 pandemic.Method:An online cross-sectional survey was developed based on methodology guidance. Asia-Pacific Hospice and Palliative Care Network subscribers (n = 1551) and organizational members (n = 185) were emailed. Descriptive analysis was undertaken.Results:Ninety-seven respondents completed the survey. Around half of services were hospital-based (n = 47, 48%), and public-funded (n = 46, 47%). Half of services reported to have confirmed cases (n = 47, 49%) and the majority of the confirmed cases were patients (n = 28, 61%). Staff perceived moderate risk of being infected by COVID-19 (median: 7/10).> 85% of respondents reported they had up-to-date contact list for staff and patients, one-third revealed challenges to keep record of relatives who visited the services (n = 30, 31%), and of patients visited in communities (n = 29, 30%). Majority of services (60%) obtained adequate resources for infection control except face mask. More than half had no guidance on Do Not Resuscitate orders (n = 59, 66%) or on bereavement care for family members (n = 44, 51%).Conclusion:Recommendations to strengthen the preparedness of palliative care services include: 1) improving the access to face mask; 2) acquiring stress management protocols for staff when unavailable; 3) reinforcing the contact tracing system for relatives and visits in the community and 4) developing guidance on patient and family care during patient’s dying trajectory.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-01T09:01:05Z
      DOI: 10.1177/10499091211002797
  • The Experiences of Family Members of Ventilated COVID-19 Patients in the
           Intensive Care Unit: A Qualitative Study
    • Authors: Chiahui Chen, Elaine Wittenberg, Suzanne S. Sullivan, Rebecca A. Lorenz, Yu-Ping Chang
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members’ experiences and support needs.Aim:To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU).Design:Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis.Setting/Participants:Ten family members of adult COVID-19 patients in the ICU.Result:Seven key themes represented family members’ experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19’s effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members’ feelings about the patient’s diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones.Conclusion:The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family’s burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-04-01T08:49:20Z
      DOI: 10.1177/10499091211006914
  • An Instrument to Assess Self-Perceived Competencies in End-of-Life Care
           for Health Care Professionals: The End-of-Life Care Questionnaire
    • Authors: Marcos Montagnini, Heather M. Smith, Deborah M. Price, Linda Strodtman, Bidisha Ghosh
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:We describe the development and the psychometric properties of an instrument to assess self-perceived EOL care competencies for healthcare professionals: The End-of-Life Care Questionnaire (EOL-Q).Methods:The EOL-Q consists of 28 questions assessing knowledge, attitudes and behaviors with subscale items addressing seven domains of care: decision-making, communication, continuity of care, emotional support for patients/families, symptom management, spiritual support for patients/families, and support for clinicians. The EOL-Q was used to assess competencies of 1,197 healthcare professionals from multiple work units at a large medical center. Cronbach’s alpha coefficients were calculated for the survey and subscales. A factor analysis was also conducted.Results:Internal consistency reliability was for was high for the total scale (0.93) and for the subscales addressing knowledge, behaviors, decision-making, communication, emotional support and symptom management (0.84-0.92); and moderate (>0.68) for the attitudes and continuity of care subscales. The factor analysis demonstrated robust consolidation of the communication and continuity of care subscales (eigenvalue 9.47), decision-making subscale (eigenvalue 3.38), symptom management subscale (eigenvalue 1.51), and emotional and spiritual support subscales (eigenvalue 1.13).Conclusion:Analysis of the psychometric properties of the EOL-Q care across settings supports its reliability and validity as a measure of self-perceived EOL care competencies in the domains of communication and continuity of care, decision-making, symptom management, and emotional and spiritual support. The EOL-Q displays promise as a tool for use in a variety of educational, research, and program development initiatives in EOL care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-31T09:04:05Z
      DOI: 10.1177/10499091211005735
  • Barriers to the Use of Neurologic Criteria to Declare Death in Africa
    • Authors: Ariane Lewis, Andrew Kumpfbeck, Jordan Liebman, Sam D. Shemie, Gene Sung, Sylvia Torrance, David Greer
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      There are varying medical, legal, social, religious and philosophical perspectives about the distinction between life and death. Death can be declared using cardiopulmonary or neurologic criteria throughout much of the world. After solicitation of brain death/death by neurologic criteria (BD/DNC) protocols from contacts around the world, we found that the percentage of countries with BD/DNC protocols is much lower in Africa than other developing regions. We performed an informal review of the literature to identify barriers to declaration of BD/DNC in Africa. We found that there are numerous medical, legal, social and religious barriers to the creation of BD/DNC protocols in Africa including 1) limited number of healthcare facilities, critical care resources and clinicians with relevant expertise; 2) absence of a political and legal framework codifying death; and 3) cultural and religious perspectives that present ideological conflict with the idea of BD/DNC, in particular, and between traditional and Western medicine, in general. Because there are a number of unique barriers to the creation of BD/DNC protocols in Africa, it remains to be seen how the World Brain Death Project, which is intended to create minimum standards for BD/DNC around the world, will impact BD/DNC determination in Africa.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-30T09:19:49Z
      DOI: 10.1177/10499091211006921
  • A Qualitative Study Describing Pediatric Palliative Care in
           Non-Metropolitan Areas of Illinois
    • Authors: Patrick Murday, Kimberly Downing, Erin Gaab, Jennifer Misasi, Kelly N. Michelson
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas.Objective:Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery.Design:A qualitative study involving focus groups (FGs) with PPC stakeholders.Setting/Participants:From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC).Measurements:At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis.Results:Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges.Conclusion:Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-25T09:05:24Z
      DOI: 10.1177/10499091211005700
  • Improving Advance Care Planning Documentation Using Reminders to Patients
           and Physicians: A Longitudinal Study in Primary Care
    • Authors: Karen D. Halpert, Kimberly Ward, Philip D. Sloane
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:Documenting advance care planning (ACP) in primary care requires multiple triggers. New Medicare codes make it easier for providers to bill for these encounters. This study examines the use of patient and provider reminders to trigger advance care planning discussions in a primary care practice. Secondary outcome was billing of new ACP billing codes.Methods:Patients 75 years and older scheduled for a primary care appointment were screened for recent ACP documentation in their chart. If none was found, an electronic or mail message was sent to the patient, and an electronic message to their provider, about the need to have discussion at the upcoming visit. Chart review was performed 3 months after the visit to determine if new ACP discussion was documented in the chart.Results:In the 3 months after the reminder had been sent to patients and providers, new ACP documentation or billing was found in 28.8% of the patients. Most new documentation was health care decision maker (75.6% of new documentation) with new DNR orders placed for 32.3% of these patients. The new Medicare billing code was filled 10 times (7.8%).Conclusion:Reminders sent to both patients and providers can increase documentation of ACP during primary care visits, but rarely triggers a full ACP conversation.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-23T09:17:16Z
      DOI: 10.1177/10499091211004890
  • Commentary on Chaplain-Physician Interactions From the Chaplain’s
           Perspective: A Mixed Method Analysis
    • Authors: Rev George Handzo, Rev Brian Hughes
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Gomez and her colleagues have presented a helpful study of the relationship of the chaplains in her health system to physicians which highlights several barriers to a well-integrated relationship and thus to more optimal patient care. We have seen these same barriers as we have consulted with health systems nationally and have also identified many best practices that mediate or even eliminate many of these barriers. This commentary describes some of what we have seen as chaplain-generated causes of those barriers and effective strategies that have been employed to overcome them. We also provide some resources for chaplains who wish to institute some of these best practices themselves.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-19T09:26:08Z
      DOI: 10.1177/10499091211003080
  • Deprescribing in Older Adults With Cancer and Limited Life Expectancy: An
           Integrative Review
    • Authors: Edwin J. Brokaar, Frederiek van den Bos, Loes E. Visser, Johanneke E. A. Portielje
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Polypharmacy is common in older adults with cancer and deprescribing potentially inappropriate medications becomes very relevant when life expectancy decreases due to metastatic disease. Especially preventive medications may no longer be beneficial, because they may decrease quality of life and reduction in morbidity and mortality may be futile. Although deprescribing of preventive medication is common in the last period of life, it is still unusual during active cancer treatment for advanced disease, although life expectancy is often limited to less than 1 to 2 years in that stage. We performed a systematic search of the literature in Pubmed and Embase on the discontinuation of commonly utilized groups of preventive medication and evaluated the evidence of potential benefits and harms in patients aged 65 years or older with cancer and a limited life expectancy (LLE). From 21 included studies, it can be concluded that deprescribing lipid lowering drugs, antihypertensive drugs, osteoporosis drugs and antihyperglycemic drugs is feasible in a considerable part of patients with a LLE. Discontinuation may be performed safely, without the occurrence of serious adverse events or decrease of survival. The only study that addressed quality of life after deprescribing showed that discontinuation of statins improves quality of life in patients with a LLE. Recurrence of symptoms requiring reintroduction occurred in 0-13% of patients on antihyperglycemic treatment and 8-60% of patients using antihypertensive drugs. In order to reduce pill burden and futile treatment clinicians should discuss deprescribing of preventive medication with older patients with advanced cancer and a LLE.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-19T09:25:41Z
      DOI: 10.1177/10499091211003078
  • Survival and Complications After Placement of Central Venous Access Ports
           for Palliative Chemotherapy: A Single-Institution Retrospective Analysis
    • Authors: Olivia Sachs, Priyanka Chugh, Katherine He, Jennifer M. Moseley, Patrick B. Oneal, Edward Whang, Gentian Kristo
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Given the lack of empiric recommendations for vascular access for palliative chemotherapy, we aimed to analyze survival and complications after placement of central venous access ports for palliative chemotherapy.Methods:We performed a retrospective chart review of 135 patients undergoing port placement for palliative chemotherapy at a single institution from January 2015 – July 2020.Results:The median age was 68 (range 47-91). Median overall survival was 7.7 months (95% CI, 6.5-8.9 months). The rate of port-related complications was 11.1% (15 of 135). Patients who developed port-related complications required corrective surgery in 73.3% (11 of 15) of cases. Results were similar among all patients, regardless of their primary diagnoses or central venous access sites.Conclusions:Increased awareness about the limited survival of patients after port placement for palliative chemotherapy, and their significant complication risk could be used to help patients and their providers make value-aligned decisions about vascular access.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-16T05:14:12Z
      DOI: 10.1177/10499091211002127
  • Palliative Care Education During COVID-19: The MERI Center for Education
           in Palliative Care at UCSF/Mt. Zion
    • Authors: Michael W. Rabow, Judith Redwing Keyssar, Judith Long, Maki Aoki, Gayle Kojimoto
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      In the setting of the COVID-19 pandemic as well as the recognition of systemic racism in our institutions, the symptom management, emotional/psychological support and advance care planning at the core of palliative care—once considered “an extra layer of support” —have been revealed as instrumental to individuals, families, communities, and countries facing the threat of the global pandemic. In this article, we outline the primary palliative care education efforts of one palliative care education center (The MERI Center at UCSF/Mt Zion campus) and detail the critical adjustments necessary and opportunities found in the COVID crisis.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-11T09:18:12Z
      DOI: 10.1177/10499091211000285
  • Adapting Palliative Care Skills to Provide Substance Use Disorder
           Treatment to Patients With Serious Illness
    • Authors: Katie Fitzgerald Jones, J. Janet Ho, Zachary Sager, Julie Childers, Jessica Merlin
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The majority of Palliative Care (PC) clinicians report recently caring for a person with a Substance Use Disorder (SUD). The impact of an untreated SUD is associated with significant suffering but many PC clinicians report a lack of confidence in managing this population.Objective:This paper aims to demonstrate existing PC skills that can be adapted to provide primary SUD treatment.Methods:A comprehensive literature review was conducted on quality PC domains and core SUD treatment principles. To demonstrate the shared philosophy and skills of PC clinicians and SUD treatment, the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care and resources outlining core Addiction Medicine and Nursing Competencies were used.Results:There is an abundance of overlapping domains in PC and SUD treatment. This paper focuses on the domains of communication, team-based care, quality of life considerations, addressing social determinants of health, and adherence to ethical principles. In each section, the shared domain in PC and SUD treatment is discussed and steps to expand PC clinician's skills are provided.Conclusion:PC clinicians may be among the last healthcare touchpoint for persons with SUD, by naming the shared skills required in PC and evidenced-based SUD treatment, we challenge the field to undertake primary SUD treatment as part of its constant pursuit to better serve people living with serious illness.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-09T09:54:15Z
      DOI: 10.1177/1049909121999783
  • Terminal Delirium in Hospice: The Experiences and Perspectives of
           Caregivers Providing Care to Terminally Ill Patients in Home Settings
    • Authors: Jacek T. Soroka, Krista J. Fling, Jennifer M. Heibel, Gregory R. Kutcher, Sarah J. Ward
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:Little is known about the experiences of caregivers who provide care to persons with terminal delirium (TD) in home settings. This scarcity of information is suggestive that further research is needed about care for hospice patients with delirium in the home and community.Aim:To elicit views, feelings, and end-of-life care experiences of primary caregivers assisting dying persons with TD in hospice at home.Design:Qualitative, exploratory, cross-sectional study design was chosen. In-depth semistructured interviews explored caregiver experiences in caring for persons with TD. Qualitative thematic framework analysis was used.Participants:Fifteen bereaved adult primary caregivers who received services from a hospice care program affiliated with a large nonprofit health system in the US Midwest.Results:Caregiver experiences were broad and reflected 4 major themes: symptomology, coping, effective and noneffective interventions, and support. The most distressing factors for caregivers were behaviors and symptomology of TD. They did not know what to say, how to respond, and how best to behave with someone who had delirium. Many caregivers had the impression that medication does not lessen delirium symptoms and that nonpharmacologic interventions are effective and beneficial only when they were important and meaningful to patients before delirium onset.Conclusions:This study added new knowledge from direct and personal perspectives of caregivers providing end-of-life care to patients at home. Understanding developed about provision of care to someone with TD in home hospice. Improved comprehension of caregiver experiences can help professional hospice and palliative care staff better prepare caregivers for when patients have TD.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-09T09:49:33Z
      DOI: 10.1177/10499091211000729
  • Palliative Care for Patients on Extracorporeal Membrane Oxygenation for
           COVID-19 Infection
    • Authors: Anirudh Rao, Akram M. Zaaqoq, In Guk Kang, Erin M. Vaughan, Jose Flores, Victor J. Avila-Quintero, Muhtadi H. Alnababteh, Anne M. Kelemen, Hunter Groninger
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Critically ill patients with COVID-19 infection on extracorporeal membrane oxygenation (ECMO) face high morbidity and mortality. Palliative care consultation may benefit these patients and their families. Prior to the pandemic, our institution implemented a policy of automatic palliative care consultation for all patients on ECMO due to the high mortality, medical complexity, and psychosocial distress associated with these cases.Objectives:The main objective was to describe the role of the palliative care team for patients on ECMO for COVID-19 infection. The secondary objective was to describe the clinical outcomes for this cohort.Design:Case series.Settings/Subjects:All patients age 18 or older infected by the novel coronavirus who required cannulation on ECMO from March through July of 2020, at an urban, academic medical center in the United States. Inter-disciplinary palliative care consultation occurred for all patients.Results:Twenty-three patients (median age 43 years [range 28-64], mean body mass index 34.9 kg/m2 [SD 9.2], 65% Hispanic ethnicity) were cannulated on ECMO. Eleven patients died during the hospitalization (48%). Patients older than 50 years of age demonstrated a trend toward increased odds of death compared to those younger than 50 years of age (OR 9.1, P = 0.07). Patients received an average of 6.8 (SD 3.7) palliative clinical encounters across all disciplines. The actions provided by the palliative care team included psychosocial support and counseling, determination of surrogate decision maker (for 100% of patients), pain management (83%), and non-pain symptom management (83%).Conclusions:Here, we present one of the first studies describing the patient characteristics, outcomes, and palliative care actions for critically ill patients with COVID-19 on ECMO. Almost half of the patients in this cohort died during their hospitalization. Given the high morbidity and mortality of this condition, we recommend involvement of palliative care for patients/families with COVID-19 infection who are on ECMO. The impact of palliative care on patient and family outcomes, such as symptom control, satisfaction with communication, rates of anxiety, and grief experience merits further investigation.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-09T09:19:58Z
      DOI: 10.1177/10499091211001009
  • Improving End of Life Cancer Outcomes Through Development and
           Implementation of a Spiritual Care Advocate Program
    • Authors: Toni Cipriano-Steffens, John F. Cursio, Fay Hlubocky, Marsha Sumner, Deborah Garnigan-Peters, Judy Powell, Nicole Arndt, Lee Phillips, Rev. Herbert Lassiter, Marie Gilliam, Lou Ester Petty, Rev. Scott Onque Pastor, Monica Malec, George Fitchett, Blase Polite
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Explored whether increased support for spiritual concerns between the healthcare team and patients through the provision of a Spiritual Care Advocate (SCA) would improve end of life outcomes in a metastatic cancer population.Design:Newly diagnosed metastatic cancer patients were recruited at the University of Chicago Medical Center and received spiritual support from a Spiritual Care Advocate during chemotherapy treatments. The final sample consisted of 42 patients (58% of those approached) who completed the baseline survey and had known survival status.Measurement:Patients completed pre/post surveys measuring spiritual support and palliative quality of life. Baseline measurements of religious practice and externalizing religious health beliefs were also obtained. Receipt of aggressive EOL care was derived from the electronic medical record.Result:Median age was 61 years, with 48% Black, and predominantly male (62%). Of the 42 patients, 30 (70%) had died by the time of this analysis. Perceived spiritual support from the medical team increased in 47% of those who received non-aggressive EOL care and by 40% in those who received aggressive EOL care (p=0.012). Patient perceptions of spiritual support from the medical community increased from 27% at baseline to 63% (p=0.005) after the SCA intervention. Only 20% of recipients received aggressive treatments at end of life.Conclusion:The SCA model improved the perceived spiritual support between the healthcare team and patients. Although limited by a small sample size, the model was also associated with an improvement in EOL patients’ quality of life, spiritual wellbeing, and decreased aggressive EOL care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-05T08:47:26Z
      DOI: 10.1177/1049909121995413
  • Teaching Empathic Communication to Pediatric Interns: Immediate and
           3-Month Impact
    • Authors: Jason Z. Niehaus, Megan M. Palmer, James E. Slaven, Lyle Fettig
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:Evaluate pediatric intern self-reported preparedness to Deliver Serious News, Express Empathy, and Medical Error Disclosure after a 1-day simulation based-empathic communication training. Additionally, we sought to evaluate self-reported use of communication skills and describe the clinical scenarios in which the skills were used.Methods:Pediatric interns completed the survey immediately and 3 months after participating in the communication course.Results:Self-reported preparedness to Deliver Serious News, Express Empathy, and Medical Error Disclosure all significantly improved. At 3 months, 73.9% of respondents reported using the skills at least weekly and 62% described the clinical scenarios in which they used skills. These descriptions show an ability to use the skills appropriately, and in some cases apply the skills in advanced, more difficult scenarios.Conclusion:A 1 day simulation-based reflective teaching course for pediatric interns is an effective way to teach empathic communication skills. They feel more prepared to deliver serious news, respond with empathy and disclose a medical error. In addition, the interns value the training as a part of their education and report using the skills in appropriate scenarios at 3 months.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-04T09:47:02Z
      DOI: 10.1177/1049909121999791
  • Palliative Sedation, Compassionate Extubation, and the Principle of Double
           Effect: An Ethical Analysis
    • Authors: Jordan Potter, Steven Shields, Renée Breen
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Palliative sedation is a well-recognized and commonly used medical practice at the end of life for patients who are experiencing refractory symptoms that cannot be controlled by other means of medical management. Given concerns about potentially hastening death by suppressing patients’ respiratory drive, traditionally this medical practice has been considered ethically justifiable via application of the ethical doctrine known as the Principle of Double Effect. And even though most recent evidence suggests that palliative sedation is a safe and effective practice that does not hasten death when the sedative medications are properly titrated, the Principle of Double Effect is still commonly utilized to justify the practice of palliative sedation and any risk—however small—it may entail of hastening the death of patients. One less common clinical scenario where the Principle of Double Effect may still be appropriate ethical justification for palliative sedation is when the practice of palliative sedation is pursued concurrently with the active withdrawal of life-sustaining treatment—particularly the practice of compassionate extubation. This case study then describes an unconventional case of palliative sedation with concurrent compassionate extubation where Principle of Double Effect reasoning was effectively employed to ethically justify continuing to palliatively sedate a patient during compassionate extubation.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-04T09:45:13Z
      DOI: 10.1177/1049909121998630
  • Book Review: Wittenberg, E., Goldsmith, J. V., Ragan, S. L., & Parnell, T.
           A. (2020). Caring for the Family Caregiver: Palliative Care Communication
           and Health Literacy. Oxford University Press
    • Authors: Maryjo Prince-Paul
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Caring for the Family Caregiver is published by Oxford University Press and introduces the novel framework of the Family Caregiver Communication Typology. The volume offers a close analysis of caregiver health literacy and patient outcomes and invites readers to consider the family system as the driver in shaping how family caregivers deal with chronic illness demands. The expertise of all authors (three health communication scholars and one nurse who is a health literacy expert) in the analysis illuminates the delicate balance between caregivers’ ability to understand and communicate in the context of social determinants of health. The book shares the interwoven challenges of palliative care, family caregiving, and health literacy. Caring for the Family Caregiver establishes the urgent call to address family caregiver information and communication needs and leaves the reader empowered to make changes in their own clinical practice communication and/or develop family caregiving research that addresses cultural and social factors.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-04T09:38:21Z
      DOI: 10.1177/1049909121997362
  • Outpatient Palliative Care Practice for Cancer Patients During COVID-19
           Pandemic: Benefits and Barriers of Using Telemedicine
    • Authors: Milagros D. Silva, Elizabeth E. Schack
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The current COVID-19 pandemic has impacted the way outpatient palliative care providers deliver care for patients and their families. Operational changes such as the reduction of in-person care to minimize the risk of exposure is a way healthcare has adjusted to the pandemic. Our New York City-based outpatient palliative care practice is embedded in oncology. Adopting telemedicine was an essential tool to continue providing comprehensive palliative care to vulnerable oncology patients during the COVID-19 pandemic. We describe a case illustrating the benefits and barriers of telemedicine in the care of an oncology patient in the outpatient palliative care setting.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-04T09:37:41Z
      DOI: 10.1177/1049909121997358
  • Effect of COVID-19 Pandemic on Cannabis Use in Cancer Patients
    • Authors: Kristine A. Donovan, Diane G. Portman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Medical and other cannabis use by cancer patients continues to increase. Reasons for use include management of psychosocial stressors, physical and psychological symptoms. We explored the effect of the coronavirus disease 2019 (COVID-19) pandemic on on patients’ cannabis use, hypothesizing that users would be increasing their use due to heightened stress and increased uncertainty.Methods:Participants were part of an anonymous online survey of cannabis use in cancer. Items specific to COVID-19 were administered between April and June 2020.Results:Thirty-one percent of respondents (n = 26) confirmed they used cannabis during COVID-19. The top 5 reasons for use were sleep, anxiety, nausea, pain, and appetite. Ninety-two percent denied they were using cannabis for new or different symptoms. Eighty-one percent were using about the same amount as before, 11.5% were using less, and 8% more. Only 12% reported that product cost affected their use and that they had changed the way in which they used cannabis. Eight percent were stockpiling product so that they did not run out during the pandemic.Conclusions:The percentages of those reporting a change in cannabis use were modest. Increased use may reflect efforts to relieve stress. Decreased use may reflect barriers to securing unregulated products and perceived vulnerability to the effects of infection on the respiratory system. As the pandemic continues to evolve, it will be important to monitor its effects on cancer patients as it relates to psychosocial stressors, psychological symptoms, and cannabis use.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-04T09:16:02Z
      DOI: 10.1177/1049909121999784
  • CORRIGENDUM to Educating Internal Medicine Residents on Palliative
           Medicine and Hospice Care at a GME Community Teaching Hospital
    • Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-01T09:19:31Z
      DOI: 10.1177/10499091211000241
  • The Potential of Personalized Virtual Reality in Palliative Care: A
           Feasibility Trial
    • Authors: Letizia Perna; MSc, MSW, Sam Lund, Nicola White, Ollie Minton
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Virtual Reality can help alleviate symptoms in a non-palliative care population. Personalized therapy can further alleviate these symptoms. There is little evidence in a palliative care population.Aim:To understand the feasibility of repeated personalized virtual reality sessions in a palliative care population.Design:A feasibility randomized control trial. Intervention: personalized virtual reality, Control: non-personalized virtual reality. All participants completed a 4-minute virtual reality session for 4 weeks. At each point, the Edmonton Symptom Assessment System-Revised (scored 0 = none up to 100 = worst) was completed pre- and post- each session. A time-series regression analysis was completed for the overall effect.Setting/Participants:The research took place in one hospice. The main inclusion criteria was: (1) under the care of the hospice (2) advanced disease (3) over 18 years (4) physically able to use virtual reality set (5) capacity (6) proficient English.Results:Twenty-six participants enrolled, of which 20 (77%) completed all sessions. At baseline, the intervention group had a mean pre- score of 26.3 (SD 15.1) which reduced to 11.5 (SD 12.6) after the first session. At the same time point, the control group had a mean pre- score of 37.9 (SD 21.6) which reduced to 25.5 (SD 17.4) post-session. The mean scores dropped following each session, however this was not significant (mean difference = −1.3, 95% CI: −6.4 to 3.7, p = 0.601).Conclusions:It is feasible to complete repeated virtual reality sessions within a palliative care population. Future research should explore the structure and effectiveness of virtual reality in a fully powered trial.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-15T09:37:26Z
      DOI: 10.1177/1049909121994299
  • Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic
           Serious Illness: A Mixed Method Systematic Review
    • Authors: Danetta H. Sloan, Susan M. Hannum, Lyndsay DeGroot, Sydney M. Dy, Julie Waldfogel, Linda C. Chyr, JaAlah-Ai Heughan, Allen Zhang, Renee F. Wilson, Christina T. Yuan, David S. Wu, Karen A. Robinson, Valerie T. Cotter
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations.Objectives:We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers.Data sources:We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies.Review methods:Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation.Results:We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing.Conclusions:For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization.Key Message:This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-15T09:36:27Z
      DOI: 10.1177/1049909121995416
  • Views of Registered Dietitians Compared to Speech-Language Pathologists on
           Artificial Nutrition and Hydration at the End of Life
    • Authors: Molly K Bigford, Roschelle Heuberger, Erica Raymond, Viki Shayna, James Paauw
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:To analyze and compare the knowledge and opinions of registered dietitian nutritionists (RDNs) about artificial nutrition and hydration (ANH) in a terminal illness. Beliefs of speech-language pathologists (SLPs) were also considered and compared against RDN data.Methods:This is a descriptive analysis utilizing survey responses from RDNs and SLPs regarding ANH in a case study patient with advanced dementia.Results:There was a strong belief among RDNs that ANH at end of life (EOL) would improve nutritional status, although a correlation was found between those in favor of ANH and believing it was ethical to withhold ANH at EOL (R2 = 0.109, p = 0.002). Responses indicated that SLPs need more education regarding ANH techniques, while RDNs felt ANH would improve aspiration risk. Place of employment, religion and age of respondents were also found to impact beliefs.Conclusion:Clinicians, specifically RDNs, working with patients at EOL need more evidenced-based education on the risks and benefits of ANH. Decisions regarding care of patients at EOL should be void of clinicians’ personal bias which may affect ethical treatment in the clinical setting. Further controlled trials must be performed before claims can be made regarding ANH at EOL.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-10T09:50:33Z
      DOI: 10.1177/1049909121994310
  • Interim Analysis of Attrition Rates in Palliative Care Study on Dignity
    • Authors: Virginia Samuels, Tasha M. Schoppee, Amelia Greenlee, Destiny Gordon, Stacey Jean, Valandrea Smith, Tyra Reed, Sheri Kittelson, Tammie Quest, Sean O’Mahony, Josh Hauser, Marvin O. Delgado Guay, Michael W. Rabow, Linda Emanuel, George Fitchett, George Handzo, Harvey Max Chochinov, Yingwei Yao, Diana J. Wilkie
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      A routine threat to palliative care research is participants not completing studies. The purpose of this analysis was to quantify attrition rates mid-way through a palliative care study on Dignity Therapy and describe the reasons cited for attrition. Enrolled in the study were a total of 365 outpatients with cancer who were receiving outpatient specialty palliative care (mean age 66.7 ± 7.3 years, 56% female, 72% White, 22% Black, 6% other race/ethnicity). These participants completed an initial screening for cognitive status, performance status, physical distress, and spiritual distress. There were 76 eligible participants who did not complete the study (58% female, mean age 67.9 ± 7.3 years, 76% White, 17% Black, and 7% other race). Of those not completing the study, the average scores were 74.5 ± 11.7 on the Palliative Performance Scale and 28.3 ± 1.5 on the Mini-Mental Status Examination, whereas 22% had high spiritual distress scores and 45% had high physical distress scores. The most common reason for attrition was death/decline of health (47%), followed by patient withdrawal from the study (21%), and patient lost to follow-up (21%). The overall attrition rate was 24% and within the a priori projected attrition rate of 20%-30%. Considering the current historical context, this interim analysis is important because it will serve as baseline data on attrition prior to the outbreak of the COVID-19 pandemic. Future research will compare these results with attrition throughout the rest of the study, allowing analysis of the effect of the COVID-19 pandemic on the study attrition.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-09T09:57:17Z
      DOI: 10.1177/1049909121994309
  • Understanding the Patient Experience of “as-Required” Medication in a
           Hospice In-Patient Unit
    • Authors: Alison Phippen, Barbara Murray, Jennie Pickard, Ashique Ahamed, Samantha Kay, David Waterman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Timely administration of ‘as-required’ medication is important for managing patients’ symptoms in palliative care. There are no national or local standards around the maximum length of time for the process to administer ‘as-required’ medication and little in the literature to inform practice. Our aim was to understand the patient experience of receiving these medications in the in-patient setting of a hospice.Methods:A survey of hospice patients who had been on the ward at least seven days was conducted over a fifteen-week period looking at current practice, the patient experience of requesting medication and how long it took to be administered.Results:Thirty-one responses were obtained. Patients made their requests in a variety of ways but 33% did not use their call bell. When looking at their most recent ‘as-required’ medication request, 87% of patients estimated that they received it within ten minutes. When considering their longest wait, 16% of patients reported waiting longer than twenty minutes.Conclusion:This survey highlights the importance of there being a variety of ways for patients to request ‘as-required’ medication and staff being proactive with patients to facilitate these requests. Patients perceive nursing staff to be busy and do not want to bother them. Although usually patients get their medication within ten minutes, patients can be waiting more than twenty minutes. There is a need for national standards on time to administer as-required medication within a healthcare setting and a need for more data to inform such a standard.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-08T09:02:09Z
      DOI: 10.1177/1049909121994306
  • Comparison of Traditional Videos With Telenovelas for Hospice Family
           Caregivers Education
    • Authors: Dulce M. Cruz-Oliver, Martha Abshire, Chakra Budhathoki, Melissa deCardi Hladek, Angelo Volandes, Lucas Jorgensen, Debra Parker Oliver
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG.Objective:To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group.Methods:A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos.Results:Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience.Conclusion:Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-08T09:01:18Z
      DOI: 10.1177/1049909121991524
  • Understanding Quality of Life for Palliative Patients With Dysphagia Using
           the Swallowing Quality of Life (SWAL-QOL) Questionnaire
    • Authors: Laurence Lean Chin Tan, Yujun Lim, Peiyan Ho, Lee Yen Lim, Ying Yin Lim, James Alvin Low
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:There are few studies concerning the differences in quality-of-life (QOL) between palliative care patients with and without dysphagia to date. We aimed to compare the QOL and symptoms in palliative patients with and without dysphagia using Swallowing Quality of Life (SWAL-QOL).Methods:Eighty-one palliative patients with and without dysphagia underwent the SWAL-QOL questionnaire. A series of Mann Whitney U tests were performed between non-dysphagic and dysphagic groups for the total SWAL-QOL score and the 11 SWAL-QOL domains.Results:Dysphagia significantly impacted patients’ QOL in the dysphagic group (mean, 69.5; SD 21.9) than non-dysphagic group (mean, 83.2; SD 14.8) (P = 0.006). Significant differences were observed between both groups for the domains of burden, eating desire, eating duration, symptoms, food selection, communication and mental health. The results also showed that the dysphagic group had lower symptom score across all symptoms, suggesting higher symptom burdens.Conclusions:This study is the first to examine QOL and swallow symptoms in palliative care patients with and without dysphagia. Dysphagia causes significantly worse QOL in palliative care patients. Screening for dysphagia and managing its impact on symptoms and QOL domains is important in palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-03T09:35:06Z
      DOI: 10.1177/1049909121992532
  • Corrigendum to Assessment of Pain, Physical Symptoms, and Functional State
           of Patients With Progressive Neurological Disease in Palliative Care
    • Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-02T09:36:44Z
      DOI: 10.1177/1049909121992254
  • Implementation of a Multi-Modal Palliative Care Curriculum for Pediatric
    • Authors: Eleny Romanos-Sirakis, Seleshi Demissie, Alice Fornari
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:To evaluate the feasibility and efficacy of a new multi-modal pediatric palliative care curriculum. We sought to determine the effect on comfort in palliative care, knowledge, and change in behavior by utilizing these skills with patients, and determine which modalities were most effective for residents.Study Design:25 pediatric residents were exposed to the 4-part curriculum. The modalities utilized in this curriculum included didactics, role-play, videos, case-discussion, small group activities, simulation, poetry and reflection.Results:The pediatric residents self-reported an increase in comfort and knowledge of the components of pediatric palliative care after this curriculum. In addition, 74% of residents were able to identify a patient experience in which a component of the palliative care curriculum was utilized directly in patient care. The effectiveness of techniques utilized in this multimodal curriculum varied; residents reported that the poetry and reflection components were less effective, as compared with the role-play, simulation and other active learning components.Conclusions:Implementation of a multi-modal palliative care curriculum was effective in increasing knowledge in palliative care, comfort in breaking bad news, and caring for patients with palliative care needs. This can be translated into a change in behavior to utilize these new skills in the care of various patients in pediatrics. Among the various techniques used to teach this curriculum, residents reported that the techniques that most incorporated active learning and were directly applicable to the professional role of the resident were rated most valuable. This curriculum was well received, feasible and effective for pediatric residents.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-28T10:00:09Z
      DOI: 10.1177/1049909121990826
  • The Role and Activities of Board-Certified Chaplains in Advance Care
    • Authors: Jung Kwak, Soyeon Cho, George Handzo, Brian P. Hughes, Sami S. Hasan, Albert Luu
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Healthcare chaplains have key roles in providing palliative support to patients and families, and they are well-suited to facilitate advance care planning (ACP). However, empirical data on the roles and responsibilities of chaplains in facilitating ACP are limited.Objectives:To examine the roles of board-certified healthcare chaplains in ACP in various healthcare settings.Methods:A cross-sectional, web-based self-report survey was conducted with 585 board-certified chaplains recruited from 3 major professional chaplains’ organizations in the U.S. The survey data included chaplains’ demographic and professional characteristics, their roles and responsibilities, and responses regarding communication and participation with other healthcare team members in facilitating ACP, including experienced barriers.Results:More participants worked in community hospital settings (42%) and academic medical centers (19.6%) than in any other setting. Over 90% viewed ACP as an important part of their work, 70% helped patients complete advance directives, and 90% helped patients discuss their preferences about end-of-life treatments. Many chaplains were not consistently included in team discussions regarding decision-making, although most chaplains reported that they could always find ways to communicate with their teams.Conclusion:Professional board-certified chaplains regularly engage in facilitating ACP discussions with patients and families in various healthcare settings. There is a need to recognize and provide systematic support for the role of chaplains in facilitating ACP conversations and to integrate chaplains into routine interdisciplinary team and family meetings.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-28T09:59:06Z
      DOI: 10.1177/1049909121989996
  • Behavioral Activation and Therapeutic Exposure vs. Cognitive Therapy for
           Grief Among Combat Veterans: A Randomized Clinical Trial of Bereavement
    • Authors: Ron Acierno, Brooke Kauffman, Wendy Muzzy, Melba Hernandez Tejada, Carl Lejuez
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Approximately two-thirds of Operations Enduring Freedom, Iraqi Freedom, and New Veterans reported knowing someone who was killed or seriously injured, lost someone in their immediate unit, or personally saw dead or seriously injured Americans (Hoge et al., 2004; Thomas et al., 2010; Toblin et al., 2012). Thus, it is not surprising that prevalence of Persistent Complex Bereavement Disorder (PCBD) is high in these groups. Importantly, PCBD impact appears to be independent of both Post-Traumatic Stress Disorder (PTSD) and Major Depressive Disorder (Bonnano, 2007), 2 disorders that are also highly prevalent in these groups, thus tailored treatments for grief are indicated. The Department of Veterans Affairs suggests Cognitive Therapy for Grief as a first line psychotherapy, however treatments relatively more focused on behavior change and exposure to grief cues also may be useful for this population. To address this question, the present study used a randomized controlled trial to compare a 7-session program of Behavioral Activation and Therapeutic Exposure for Grief vs. Cognitive Therapy for Grief among 155 OIF/OEF/OND veterans. Both treatments produced significant treatment gains over baseline, and these improvements were maintained over 6-month followup; however no differences were observed between groups. Given equal efficacy, implications for matching treatment to patient characteristics are discussed.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-28T09:50:49Z
      DOI: 10.1177/1049909121989021
  • Improving the Care of Patients With Serious Illness: What Are the
           Palliative Care Education Needs of Internal Medicine Residents'
    • Authors: Julia L. Frydman, Kevin Hauck, Joseph Lowy, Laura P. Gelfman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Hospitalized patients with serious illness have significant symptom burden and face complex medical decisions that often require goals of care discussions. Given the shortage of specialty palliative care providers, there is a pressing need to improve the palliative care skills of internal medicine (IM) residents, who have a central role in the care of seriously ill patients hospitalized at academic medical centers.Methods:We conducted an anonymous survey of IM residents at a large, urban, academic medical center to identify which aspects of palliative care trainees find most important and their knowledge gaps in palliative care. The survey measured trainees’ self-assessed degree of importance and knowledge of core palliative care skills and evaluated frequency of completing advance care planning documentation.Results:Overall, 51 (23%) IM residents completed the survey. The majority of trainees considered multiple palliative care skills to be “very important/important”: symptom management, prognostication, introducing the palliative care approach, discussing code status, and breaking serious news. Across these same skills, trainees reported variable levels of knowledge. In our sample, trainees reported completing healthcare proxy forms and Medical Orders for Life-Sustaining Treatment infrequently.Conclusions:IM trainees rated core palliative care skills as important to their practice. Yet, they reported knowledge gaps across multiple core palliative care skills that should be addressed given their role as frontline providers for patients with serious illness.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-22T09:21:10Z
      DOI: 10.1177/1049909120987207
  • Dementia and Early Do-Not-Resuscitate Orders Associated With Less
           Intensive of End-of-Life Care: A Retrospective Cohort Study
    • Authors: Elizabeth A. Luth, Cynthia X. Pan, Martin Viola, Holly G. Prigerson
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Dementia is a leading cause of death among US older adults. Little is known about end-of-life care intensity and do-not-resuscitate orders (DNRs) among patients with dementia who die in hospital.Aim:Examine the relationship between dementia, DNR timing, and end-of-life care intensity.Design:Observational cohort study.Setting/Participants:Inpatient electronic health record extraction for 2,566 persons age 65 and older who died in 2 New York City hospitals in the United States from 2015 to 2017.Results:Multivariable logistic regression analyses modeled associations between dementia diagnosis, DNR timing, and 6 end-of-life care outcomes. 31% of subjects had a dementia diagnosis; 23% had a DNR on day of hospital admission. Patients with dementia were 18%-40% less likely to have received 4 of 6 types of intensive care (mechanical ventilation AOR: 0.82, 95%CI: 0.67 -1.00; intensive care unit admission AOR: 0.60, 95%CI: 0.49-0.83). Having a DNR on file was inversely associated with staying in the intensive care unit (AOR: 0.57, 95%CI: 0.47-0.70) and avoiding other intensive care measures. DNR placement later during the hospitalization and not having a DNR were associated with more intensive care compared to having a DNR upon admission.Conclusions:Having dementia and a do-not resuscitate order upon hospital admission are associated with less intensive end-of-life care. Additional research is needed to understand why persons with dementia receive less intensive care. In clinical practice, encouraging advance care planning prior to and at hospital admission may be particularly important for patients wishing to avoid intensive end-of-life care, including patients with dementia.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-20T09:33:11Z
      DOI: 10.1177/1049909121989020
  • Chaplaincy Care in the MICU: Examining the Association Between Spiritual
           Care and End-of-Life Outcomes
    • Authors: Dirk Labuschagne, Alexia Torke, Daniel Grossoehme, Katie Rimer, Martha Rucker, Kristen Schenk, James E Slaven, George Fitchett
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Seriously ill patients admitted to the Intensive Care Unit (ICU) experience severe spiritual and existential distress. Patients’ surrogate decision makers face the burden of making complex decisions about their loved ones’ care. Experienced chaplains may play a role in assisting with decision-making, possibly by aligning patients’ values and wishes with treatment plans and avoiding non-beneficial aggressive measures.Objectives:To identify associations between chaplaincy care and length of stay (LOS) in the medical ICU (MICU).Methods:This was a retrospective observational study of usual spiritual care in the adult MICUs of 4 medical centers in the United States over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information. Through bivariate and multivariable analyses associations between spiritual care and LOS were examined.Results:In multivariable analysis of the 254 patients, receiving spiritual care was associated with an increased likelihood of being in a higher LOS tertile (adjusted odds ratio = 2.94, p < .001). In post hoc bivariate analysis, cases receiving spiritual care within the first 48 hours of MICU admission revealed a trend toward lower LOS (p = .181).Conclusion:Spiritual care in the MICU was associated with longer LOS. Early intervention by chaplains who are well-integrated in the ICU may assist patients and their loved ones in coming to terms with grave illness and making difficult treatment decisions. Further well-designed studies of spiritual care interventions that may affect outcomes are needed.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-19T04:04:33Z
      DOI: 10.1177/1049909120987218
  • An Ethically Justified Approach That Integrates Advance Directives
           Discussions With Care of the Patient With Cancer
    • Authors: Rima Patel, Paul Mathew
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Although the frequency of advance directives discussions may be increasing, there is a need to improve the quality of these discussions. In a range of advanced medical illnesses, including cancer, poor outcomes with advanced cardiopulmonary life support (ACLS) have been well documented. However, when speaking to patients at the end-of-life, physicians frequently withhold evidence-based information and guidance about prognosis or outcomes of ACLS. Tools and models developed to facilitate communication at the end-of-life do not explicitly include recommendations on advance directives and specifically do not discuss the available evidence on ACLS outcomes in the seriously ill. Here, we review the current literature on outcomes of ACLS and current tools and communications for end-of-life discussions. A majority of patients have a preference for truth-telling and guidance. We advocate an approach that integrates individual goals and preferences with a shared understanding of prognosis and appropriate management options, as judged and recommended by the disease experts, in order to reach an evidence-based decision on advance directives. This pragmatic and ethically justified approach emphasizes active empathic communication to prioritize the care of the patient over the mechanical details of ACLS, thereby aligning end-of-life discussions with current practices in other domains of medicine.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-19T04:03:13Z
      DOI: 10.1177/1049909120988507
  • A Multicenter Retrospective Review of Systemic Anti-Cancer Treatment and
           Palliative Care Provided to Solid Tumor Oncology Patients in the 12 Weeks
           Preceding Death in Ireland
    • Authors: Victoria Mallett, Anna Linehan, Orla Burke, Laura Healy, Sara Picardo, Catherine M. Kelly, John McCaffrey, Des Carney, Ray McDermott, Janice Walshe, Fergal Kelleher, Stephen Higgins, Karen Ryan, Michaela J. Higgins
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Systemic anti-cancer treatment (SACT) can improve symptoms and survival in patients with incurable cancer but there may be harmful consequences. Information regarding the use of SACT at the end-of-life and its impact on patients has not been described in Ireland.Aims:The study aimed to quantify and describe the use of SACT at end-of-life. The primary outcome of interest was the number of patients who received treatment in the last 12, 4 and 2 weeks of life. Secondary outcomes included the frequency of admissions and procedures, location of death, and timing of specialist palliative care (SPC) referral.Methods:Retrospective review. Fisher exact testing was used for analyses. Patients were included if they died between January 2015 and July 2017 and received at least 1 dose of treatment for a solid tumor malignancy.Results:Five hundred and eighty two patients were included. Three hundred and thirty eight (58%), 128 (22%) and 36 (6%) received treatment in the last 12, 4 and 2 weeks of life respectively. Patients who received chemotherapy in the last 12 weeks of life were more likely to be admitted to hospital, undergo a procedure, and die in hospital than those who did not (P < 0.001 for all). Median time of SPC referral before death was shorter in those patients who received chemotherapy than those who did not (61 v129 days, p = 0.0001).Conclusion:Patients who received chemotherapy had a higher likelihood of hospital admission, invasive procedure, and in-hospital death. They were less likely to have been referred early to SPC services.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-13T11:37:34Z
      DOI: 10.1177/1049909120985234
  • An Exploratory Qualitative Study of Patient and Caregiver Perspectives of
           Ambulatory Kidney Palliative Care
    • Authors: Alycia A. Bristol, Sobaata Chaudhry, Dana Assis, Rebecca Wright, Derek Moriyama, Katherine Harwood, Abraham A. Brody, David M. Charytan, Joshua Chodosh, Jennifer S. Scherer
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program.Methods:Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design.Results:We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation.Significance of Results:Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-13T11:37:33Z
      DOI: 10.1177/1049909120986121
  • Palliative Care Services in the NeuroICU: Opportunities and Persisting
    • Authors: Michael Morris, Emily L. Mroz, Cristina Popescu, Jacqueline Baron-Lee, Katharina M. Busl
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:End-of-life (EOL) supportive care, including palliative and hospice services, is an area of increasing importance in critical care. Neurointensivists face unique challenges in providing timely supportive care to terminally ill patients expected to expire in the NeuroICU.Objective:This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed NeuroICU at a large academic medical center.Design:A retrospective chart review of patients who expired in the NeuroICU was conducted. The timeline from patient admission to arrival of palliative care services was traced. Qualitative review of chart notes was used to identify barriers to provision of palliative services.Setting:A total of 330 patients expired in the NeuroICU during the study period, including 176 from the neurology and 154 from the neurosurgical service.Results:Across services, 146 expired patients were never referred to palliative care or hospice services. Of those referred, over one-third were referred more than 4 days past admission to the NeuroICU. On average, patients were referred with less than 1 day before expiration. Common barriers to referral for supportive services were documented (e.g., patient expected to expire, family declined service).Conclusions:Despite benefits of palliative care and an in-hospital hospice opportunity, we identified lack of referral, and particularly delays in referral to services as significant barriers. Our study highlights these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for EOL services in this setting.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-12T01:53:09Z
      DOI: 10.1177/1049909120987215
  • Implementation of Palliative Care in Clinical Practice in German Units for
           Allogeneic Stem Cell Transplantation: A Nationwide Survey
    • Authors: William Krüger, Britta Buchhold, Dennis Nonnenberg, Thomas Neumann, Laila Schneidewind, Christian A. Schmidt
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Allogeneic stem cell transplantation (alloSCT) is a curative therapy for otherwise fatal diseases, however it is associated with a considerable morbidity and mortality. In consequence, it can be assumed that a considerable percentage of patients would benefit from high-quality palliative care (PC) during their course of disease. To assess the standard of PC in German transplant centers, a questionnaire was sent out to all German centers recognized from the EBMT membership list and the annually ZKRD report (n = 52). The response rate was not as high as expected with n = 27 (51,9%), even after reminding by phone calls or by e-mails. In brief, palliative care after allogeneic stem cell transplantation shows a wide variation in Germany. This is true for structures, processes and measures. A national standard for SCT-patients has not been established so far and there are no pre-conditions concerning palliative care after alloSCT for a certification by the EBMT according the JACIE standards. There is a considerable need for a crosslinking of alloSCT with PC. Clear standards should be established by the scientific societies concerning personnel, structure and processes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-12T01:52:09Z
      DOI: 10.1177/1049909120986963
  • Cost Savings Associated With Palliative Care Among Older Adults With
           Advanced Cancer
    • Authors: Paige E. Sheridan, Wendi G. LeBrett, Daniel P. Triplett, Eric J. Roeland, Andrew R. Bruggeman, Heidi N. Yeung, James D. Murphy
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There is inconsistent evidence that palliative care intervention decreases total healthcare expenditure at end-of-life for oncology patients. This inconsistent evidence may result from small sample sizes at single institution studies and disparate characterization of costs across studies. Comprehensive studies in population-based datasets are needed to fully understand the impact of palliative care on total healthcare costs. This study analyzed the impact of palliative care on total healthcare costs in a nationally representative sample of advanced cancer patients.Methods:We conducted a matched cohort study among Medicare patients with metastatic lung, colorectal, breast and prostate cancers. We matched patients who received a palliative care consultation to similar patients who did not receive a palliative care consultation on factors related to both the receipt of palliative care and end of life costs. We compared direct costs between matched patients to determine the per-patient economic impact of a palliative care consultation.Results:Patients who received a palliative care consultation experienced an average per patient cost of $5,834 compared to $7,784 for usual care patients (25% decrease; p < 0.0001). Palliative care consultation within 7 days of death decreased healthcare costs by $451, while palliative care consultation more than 4 weeks from death decreased costs by $4,643.Conclusion:This study demonstrates that palliative care has the capacity to substantially reduce healthcare expenditure among advanced cancer patients. Earlier palliative care consultation results in greater cost reductions than consultation in the last week of life.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-11T09:38:47Z
      DOI: 10.1177/1049909120986800
  • Sociodemographic Disparities in Access to Hospice and Palliative Care: An
           Integrative Review
    • Authors: Katie E. Nelson, Rebecca Wright, Anna Peeler, Teresa Brockie, Patricia M. Davidson
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There is growing evidence of disparities in access to hospice and palliative care services to varying degrees by sociodemographic groups. Underlying factors contributing to access issues have received little systematic attention.Objective:To synthesize current literature on disparities in access to hospice and palliative care, highlight the range of sociodemographic groups affected by these inequities, characterize the domains of access addressed, and outline implications for research, policy, and clinical practice.Design:An integrative review comprised a systematic search of PubMed, Embase, and CINAHL databases, which was conducted from inception to March 2020 for studies outlining disparities in hospice and palliative care access in the United States. Data were analyzed using critical synthesis within the context of a health care accessibility conceptual framework. Included studies were appraised on methodological quality and quality of reporting.Results:Of the articles included, 80% employed non-experimental study designs. Study measures varied, but 70% of studies described differences in outcomes by race, ethnicity, or socioeconomic status. Others revealed disparate access based on variables such as age, gender, and geographic location. Overall synthesis highlighted evidence of disparities spanning 5 domains of access: Approachability, Acceptability, Availability, Affordability, and Appropriateness; 60% of studies primarily emphasized Acceptability, Affordability, and Appropriateness.Conclusions:This integrative review highlights the need to consider various stakeholder perspectives and attitudes at the individual, provider, and system levels going forward, to target and address access issues spanning all domains.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-11T09:36:06Z
      DOI: 10.1177/1049909120985419
  • Hospice Palliative Care Volunteers’ Attitudes, Opinions, Experiences,
           and Perceived Needs for Training Around Medical Assistance in Dying (MAiD)
    • Authors: Stephen Claxton-Oldfield, Sophie Beaudette
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Medical assistance in dying (MAiD) has been legal in Canada for over 4 years, but little is known about hospice palliative care (HPC) volunteers’ attitudes toward MAiD. To address this issue, 48 volunteers from 2 HPC volunteer programs in Atlantic Canada completed an anonymous mail survey examining their attitudes, opinions, experiences, and perceived needs for training around MAiD. The volunteers’ responses were generally supportive of MAiD as an end-of-life option and approving of some of the proposed changes to the current MAiD legislation (e.g., 85% of the volunteers either strongly agreed or agreed that advance requests for MAiD should be permitted). In terms of volunteers’ experiences, 15% of the volunteers reported that a patient of theirs had tried to initiate a conversation with them about MAiD. Nearly all (96%) of the volunteers indicated that it was not appropriate for them to bring up the topic of MAiD with their patients or patients’ family members/caregivers. Seventy percent of the volunteers reported that if a patient of theirs chose to pursue MAiD that they would be comfortable with being present (if asked) when it was being administered. Nearly two-thirds (64%) of the volunteers were interested in learning more about MAiD. The implications of this study for volunteer policies, specifically, those policies relating to the role of volunteers when it comes to conversations about MAiD with patients and patients’ family members/caregivers (should they arise) are discussed, as is the need for training on the topic of MAiD.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-08T09:55:08Z
      DOI: 10.1177/1049909120985130
  • A Systematic Review on Barriers to Palliative Care in Oncology
    • Authors: Jyotsana Parajuli, Judith E. Hupcey
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The number of people with cancer and the need for palliative care among this population is increasing in the United States. Despite this growing need, several barriers exist to the utilization of palliative care in oncology. The purpose of this study was to synthesize the evidence on the barriers to palliative care utilization in an oncology population. A systematic review of literature was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. PubMed, CINAHL, and Psych Info databases were used for the literature search. Articles were included if they: 1) focused on cancer, (2) examined and discussed barriers to palliative care, and c) were peer reviewed, published in English, and had an accessible full text. A total of 29 studies (8 quantitative, 18 qualitative, and 3 mixed-methods) were identified and synthesized for this review. The sample size of the included studies ranged from 10 participants to 313 participants. The barriers to palliative care were categorized into barriers related to the patient and family, b) barriers related to providers, and c) barriers related to the healthcare system or policy. The factors identified in this review provide guidance for intervention development to mitigate the existing barriers and facilitate the use palliative care in individuals with cancer.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-08T09:47:18Z
      DOI: 10.1177/1049909120983283
  • Cholinesterase Inhibitor Use in Patients With Dementia Admitted to a
           Palliative Care Unit
    • Authors: Giulia-Anna Perri, Jessica Wilson, Sandra Gardner, Anna Berall, Anne Kirstein, Houman Khosravani
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:Current guidelines suggest that patients with severe dementia on cholinesterase inhibitors (CHEIs) should discontinue their CHEIs by taper. This study aims to define the prevalence of patients admitted to a palliative care unit (PCU) with dementia on a CHEI and to determine whether these patients were tapered off their CHEIs according to current deprescribing guidelines.Design:This is a descriptive retrospective chart review that examined patients admitted to a PCU with dementia on a CHEI from January 2015 to June 2019.Methods:Individuals admitted to the PCU with a primary or comorbid diagnosis of dementia were identified. Their corresponding CHEI dose, frequency and discontinuation pattern were identified. Data were analyzed using descriptive statistics.Results:A total of 36 patients were admitted to the PCU with dementia on a CHEI (prevalence of 2.3%). The median length of stay was 21 days. For 31 of these patients, their CHEI was discontinued, only 9 of which had a taper. Of the 24 patients who discontinued their CHEI suddenly, 10 patients had an order to discontinue their CHEI in the last 2 days before their date of death.Conclusion:This study suggests that although patients admitted to a PCU with dementia have their CHEI discontinued, the discontinuation was done without a taper. In many cases the CHEIs were continued through the active stage of dying. Future work should explore reasons why PCU physicians are mostly late to taper CHEIs for patients admitted with dementia.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-06T03:28:33Z
      DOI: 10.1177/1049909120985115
  • Overcoming Challenges to Surrogate Decision Making for Young Adults at the
           End of Life
    • Authors: Nathan Lightfoot, Yordanka Kirkova, Stephen Fox, Sheinei Alan
      First page: 596
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient’s disease course and at the end of life. These include personal patient factors and SDM factors. It has been identified that spiritual and community group support is a powerful, but inadequately used resource for these discussions. It can improve patient-SDM-provider communications, decrease psycho-social distress, and avoid unnecessary interventions at the end of life.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-03-10T09:30:59Z
      DOI: 10.1177/10499091211001007
  • Awareness of Palliative Care, Hospice Care, and Advance Directives in a
           Racially and Ethnically Diverse Sample of California Adults
    • Authors: Mohsen Bazargan, Sharon Cobb, Shervin Assari, Lucy W. Kibe
      First page: 601
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Numerous studies have documented multilevel racial inequalities in health care utilization, medical treatment, and quality of care in minority populations in the United States. Palliative care for people with serious illness and hospice services for people approaching the end of life are no exception. It is also well established that Hispanics and non-Hispanic Blacks are more likely than non-Hispanic Whites to have less knowledge about advance care planning and directives, hospice, and palliative care. Both qualitative and quantitative research has identified lack of awareness of palliative and hospice services as one of the major factors contributing to the underuse of these services by minority populations. However, an insufficient number of racial/ethnic comparative studies have been conducted to examine associations among various independent factors in relation to awareness of end-of-life, palliative care and advance care planning and directives.Aims:The main objective of this analysis was to examine correlates of awareness of palliative, hospice care and advance directives in a racially and ethnically diverse large sample of California adults.Methods:This cross-sectional study includes 2,328 adults: Hispanics (31%); non-Hispanic Blacks (30%); and non-Hispanic Whites (39%) from the Survey of California Adults on Serious Illness and End-of-Life 2019. Using multivariate analysis, we adjusted for demographic and socio-economic variables while estimating the potential independent impact of health status, lack of primary care providers, and recent experiences of participants with a family member with serious illnesses.Results:Hispanic and non-Hispanic Black participants are far less likely to report that they have heard about palliative and hospice care and advance directives than their non-Hispanic White counterparts. In this study, 75%, 74%, and 49% of Hispanics, non-Hispanic Blacks, and non-Hispanic White participants, respectively, claimed that they have never heard about palliative care. Multivariate analysis of data show gender, age, education, and income all significantly were associated with awareness. Furthermore, being engaged with decision making for a loved one with serious illnesses and having a primary care provider were associated with awareness of palliative care and advance directives.Discussion:Our findings reveal that lack of awareness of hospice and palliative care and advance directives among California adults is largely influenced by race and ethnicity. In addition, demographic and socio-economic variables, health status, access to primary care providers, and having informal care giving experience were all independently associated with awareness of advance directives and palliative and hospice care. These effects are complex, which may be attributed to various historical, social, and cultural mechanisms at the individual, community, and organizational levels. A large number of factors should be addressed in order to increase knowledge and awareness of end-of-life and palliative care as well as completion of advance directives and planning. The results of this study may guide the design of multi-level community and theoretically-based awareness and training models that enhance awareness of palliative care, hospice care, and advance directives among minority populations.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-04T09:52:53Z
      DOI: 10.1177/1049909121991522
  • What Do Adults With HIV Want' End-of-Life Care Goals, Values and
           Beliefs by Gender, Race, Sexual Orientation
    • Authors: Katherine B. Grill, Jichuan Wang, Rachel K. Scott, Debra Benator, Lawrence J. D’Angelo, Maureen E. Lyon
      First page: 610
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH).Methods:223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial.Findings:The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091.Conclusion:Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-19T04:37:25Z
      DOI: 10.1177/1049909120988282
  • Spirituality and the Illness Experience: Perspectives of African American
           Older Adults
    • Authors: Shaunna Siler, Kelly Arora, Katherine Doyon, Stacy M. Fischer
      First page: 618
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Disparities in hospice and palliative care (PC) for African Americans have been linked to mistrust toward the healthcare system, racial inequalities, and cultural preferences. Spirituality has been identified as important to African Americans in general. Less is known about the influence of spirituality on African American illness experiences.Objective:The goal of this study was to understand older African Americans’ perspectives on how spirituality influences chronic illness experiences to inform the development of a culturally tailored PC intervention.Methods:In partnership with 5 churches in the Denver metropolitan area, we conducted focus groups with African American older adults (n = 50) with chronic health conditions and their family caregivers. Transcripts were analyzed using a deductive approach. The theoretical framework for this study draws on psychology of religion research.Results:Themes referenced participants’ spiritual orienting systems, spiritual coping strategies, and spiritual coping styles. Psycho-spiritual struggles, social struggles, and sources of social support were also identified. Findings suggest African Americans’ spirituality influences chronic illness experiences. Participants relied on their spirituality and church community to help them cope with illness. In addition, social struggles impacted the illness experience. Social struggles included mistrust toward the healthcare system and not being connected to adequate resources. Participants expressed a need to advocate for themselves and family members to receive better healthcare. Churches were referred to as a trusted space for health resources, as well as spiritual and social support.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-19T09:54:05Z
      DOI: 10.1177/1049909120988280
  • Associations Between Health Literacy and End-of-Life Care Intensity Among
           Medicare Beneficiaries
    • Authors: Qingying Luo, Kewei Shi, Peiyin Hung, Shi-Yi Wang
      First page: 626
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Despite well-documented disparities in end-of-life (EOL) care, little is known about whether patients with low health literacy (LHL) received aggressive EOL care.Objective:This study examined the association between health literacy (HL) and EOL care intensity among Medicare beneficiaries.Method:We conducted a retrospective analysis of Medicare fee-for-service decedents who died in July-December, 2011. ZIP-code-level HL scores were estimated from the 2010-2011 Health Literacy Data Map, where a score of 225 or lower was defined as LHL. Aggressive EOL care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last 6 months of life, in-hospital death, and any of above. Using hierarchical generalized linear models, we examined the association between HL and aggressive EOL care.Results:Of 649,556 decedents, the proportion of decedents who received any aggressive EOL care among those in LHL areas was 82.7%, compared to 72.7% in HHL areas. In multivariable analyses, decedents residing in LHL areas, compared to those in HHL areas, had 31% higher odds of aggressive EOL care (adjusted odds ratio [AOR] 1.31; 95% confidence interval [CI]:1.21-1.42), including higher odds of no hospice use (AOR 1.35; 95% CI: 1.27-1.44), repeated hospitalization (AOR 1.07; 95% CI: 1.01-1.14) and in-hospital death (AOR 1.21; 95% CI: 1.13-1.29).Conclusion:Medicare beneficiaries who resided in LHL areas were likely to receive aggressive EOL care. Tailored efforts to improve HL and facilitate patient-provider communications in LHL areas could reduce EOL care intensity.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-21T09:36:56Z
      DOI: 10.1177/1049909120988506
  • Advance Care Planning—Complex and Working: Longitudinal Trajectory of
           Congruence in End-of-Life Treatment Preferences: An RCT
    • Authors: Maureen E. Lyon, Sarah Caceres, Rachel K. Scott, Debra Benator, Linda Briggs, Isabella Greenberg, Lawrence J. D’Angelo, Yao I. Cheng, Jichuan Wang
      First page: 634
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied.Objective:To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls.Methods:Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis.Findings:223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (β = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class.Conclusion:ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-03T09:34:05Z
      DOI: 10.1177/1049909121991807
  • “It Made Me Feel Like I Didn’t Know My Own Body”: Patient-Provider
           Relationships, LGBTQ+ Identity, and End-of-Life Discussions
    • Authors: Kristen E. Pecanac, Madison Vander Hill, Elizabeth Borkowski
      First page: 644
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:LGBTQ+ individuals experience multiple challenges receiving quality care at the end of life, such as lack of confidence in the healthcare system to address their needs and lack of knowledge about advance care planning. Important gaps remain about the needs of LGBTQ+ individuals in the provider-patient relationship and how critical discussions about the end of life occur or do not occur in that relationship. The purpose of this study is to explore patients’ narratives of their relationship with their provider and their experiences discussing end-of-life care with their providers, among patients who do and do not identify as LGBTQ+.Methods:Twenty-nine attendants of an event devoted to LGBTQ+ health, 15 of which identified as LGBTQ+, completed an altered version of the CAHPS® Patient Narrative Elicitation Protocol. We used inductive content analysis to qualitatively analyze the data.Results:Respondents described wanting to be heard, finding safety and trust, and valuing competency in their relationship with their provider. Respondents who identified as LGBTQ+ additionally 1) valued providers who avoided making assumptions, 2) looked for cues of safety to indicate they would be accepted by the provider, and 3) sought providers competent in LGBTQ+ care needs. Few respondents had discussed end-of-life care with their provider, although some assumed that their provider may or may not be able to meet their needs based on aspects of their provider-patient relationship.Conclusions:Strengthening patient-provider relationships may help improve the care of LGBTQ+ populations, particularly for the end of life.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-15T09:42:47Z
      DOI: 10.1177/1049909121996276
  • Heart to Heart Cards: A Novel, Culturally Tailored, Community-Based
           Advance Care Planning Tool for Chinese Americans
    • Authors: Zhimeng Jia, Sandy C. Stokes, Shirley Y. Pan, Richard E. Leiter, Hillary D. Lum, Cynthia X. Pan
      First page: 650
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:A paucity of literature describes the growing Chinese American community’s end-of-life (EOL) priorities and preferences.Objective:Develop a culturally-tailored advance care planning (ACP) tool to understand the EOL preferences of this underserved minority group.Methods:Informed by the Cultural Appropriateness Theory, the Chinese American Coalition for Compassionate Care (CACCC) developed Heart to Heart (HTH) Cards using a 3-step approach. First, CACCC created and refined a list of bilingual, culturally relevant EOL issues. Next, CACCC organized the EOL issues into a card deck. Finally, CACCC developed a unique playstyle of the cards—the HTH Café. From 2014-2019, CACCC recruited Chinese American volunteers and participants for HTH Cafés. Following each Café, participants completed an anonymous survey describing their sociodemographics, top 3 cards, and café evaluation.Results:The 54 HTH Cards were organized into 4 suits (spiritual, physical, financial/legal, and social). Each card displayed a culturally-tailored EOL issue in English and Chinese. Playstyles included one-on-one and group formats (ie. HTH Café). CACCC volunteers conducted 316 HTH Cafés for 2,267 Chinese American adults. Most participants were female (61.6%), between 18-50 years old (56.7%), lived in California (80.2%) and born in Asia (74.3%). The top priority (25.5%) was “If I’m going to die anyway, I don’t want to be kept alive by machines.” Participants thought the session was pleasant (99.5%) and expressed intent to complete advance directives (86.5%).Conclusion:HTH Cards represents the first, theory-driven, culturally-tailored ACP tool for Chinese Americans. More research is needed to establish its impact on ACP conversations and outcomes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-01-27T09:32:04Z
      DOI: 10.1177/1049909121989986
  • Providing Ethical and Humane Care to Hospitalized, Incarcerated Patients
           With COVID-19
    • Authors: Leah Rorvig, Brie Williams
      First page: 731
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The COVID-19 pandemic is devastating the health of hundreds of thousands of people who live and work in U.S. jails and prisons. Due to dozens of large outbreaks in correctional facilities, tens of thousands of seriously ill incarcerated people are receiving medical care in the community hospital setting. Yet community clinicians often have little knowledge of the basic rights and ethical principles governing care of seriously ill incarcerated patients. Such patients are legally entitled to make their own medical decisions just like non-incarcerated patients, and retain rights to appoint surrogate decision makers and make advance care plans. Wardens, correctional officers, and prison health care professionals should not make medical decisions for incarcerated patients and should not be asked to do so. Dying incarcerated patients should be offered goodbye visits with their loved ones, and patients from federal prisons are legally entitled to them. Community health care professionals may need to advocate for this medically vulnerable hospitalized patient population to receive ethically appropriate, humane care when under their care in community hospitals. If ethical care is being obstructed, community health care professionals should contact the prison’s warden and medical director to explain their concerns and ask questions. If necessary, community clinicians should involve a hospital’s ethics committee, leadership, and legal counsel. Correctional medicine experts and legal advocates for incarcerated people can also help community clinicians safeguard the rights of incarcerated patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-02-10T09:51:12Z
      DOI: 10.1177/1049909121994313
  • Assessment of Pain, Physical Symptoms, and Functional State of Patients
           With Progressive Neurological Disease in Palliative Care
    • Authors: Radka Bužgová, Radka Kozáková, Michal Bar
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Patients with MS should be provided palliative care, which could help them manage symptoms more efficiently and could solve some psychosocial problems. Evaluating the satisfaction with provided care may be one of the factors of the quality of care evaluation.Aim:The aim of this controlled intervention study was to determine the factors affecting one’s satisfaction with care in patients in advanced stages of MS and their caregivers. Furthermore, the aim was to study the difference in the satisfaction of patients and family members with the provided specialized palliative care, as opposed to the standard care.Methods:The sample consisted of 103 patients with MS who were randomized to either a palliative care intervention or the control group. Family members of each patient were invited in the study, and 97 caregivers agreed to participe. The patients in the intervention group were provided with neuropalliative care in the form of consultations with a multidisciplinary palliative team. A modified questionnaire, CANHELP Lite, was used to collect data. Patients and family members completed the questionnaire 3 months after the intervention.Results:The patients and caregivers in the intervention group expressed significantly greater satisfaction in all analyzed areas (p = 0.000-0.002). The provided intervention predicted the satisfaction in the domains of a relationship with the doctor, disease management, and decision-making/communication. Another important predictor of the satisfaction in all domains was the functional state of the patient.Conclusion:Targeted consultations resulted in the greater satisfaction of patients with MS and their caregivers with the provided care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-31T07:41:00Z
      DOI: 10.1177/1049909120985422
  • Added Value of Early Consultation of an Inpatient Palliative Care Team in
           Hospitalized Older Patients With High Symptom Burden: A Prospective
           Comparative Study
    • Authors: Myrthe W. Naaktgeboren, Fabienne J. H. Magdelijns, Daisy J. A. Janssen, Marieke H. J. van den Beuken-van Everdingen
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:It is estimated that in 2050 one quarter of the population in Europe will be aged 65 years and older. Although the added value of a palliative care team is emphasized in the literature, the impact of the palliative care team on the symptom burden in older non-cancer patients is not yet well established.Objectives:To structurally measure symptoms and to investigate whether proactive consultation with a palliative care team results in improvement of symptoms.Design:This study has a prospective comparative design.Setting/Participants:Older patients, admitted to a Dutch University Medical Centre for who a health care professional had a negative response to the Surprise Question, were selected.Measurements, Results:In period one, 59 patients completed the Utrecht Symptom Diary (USD) at day one of admission and after 7 days. In period 2 (n = 60), the same procedure was followed; additionally, the palliative care team was consulted for patients with high USD-scores. Significant improvement on the USD Total Distress Score (TSDS) was observed in both groups without a difference between the 2 periods. This study showed an association between consultation of the palliative care team and improvement on USD TSDS (adjusted odds ratio: 4.9; 95% confidence interval: 1.816-13.198), despite low follow-up rate of advices (approximately 50%).Conclusions:This study emphasizes the importance of creating awareness for consulting the palliative care team. Further research should focus on assessing the reason behind the low follow-up rate of the advice given and understanding the specific advices contributing to symptom improvement.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-31T07:07:32Z
      DOI: 10.1177/1049909120982606
  • Clinical Course for Patients With Trisomy 13 and 18 Pursuing
           Life-Prolonging Therapies Versus Comfort-Directed Care
    • Authors: Michelle C. Perry Milligan, Laura E. Jackson, Scott H. Maurer
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Care for infants with Trisomy 13 and 18 is evolving with more children being offered medical and surgical interventions. Parents and clinicians of children diagnosed with trisomy 13 and 18 would benefit from understanding how parental goals of care correlate with the subsequent clinical course of children with these conditions.Objective:To describe and compare parental goals of care (GOC) and clinical course in infants with trisomy 13 and 18.Design:Single center, retrospective (2013-19) analysis of electronic health record repository at a birthing center and a tertiary care hospital.Measurements:ICD-9/10 codes were used to identify patients with trisomy 13 or 18 born between 2013-2019. Their records were abstracted for their diagnosis, hospitalization days, interventions, GOC, death location and length of life.Result:Twenty-eight total patients were identified; trisomy 13, mosaic trisomy 13 and trisomy 18 were diagnosed in 9, 2 and 17 patients respectively. Among the 26 patients with complete trisomy 13 or 18, 8 had life-prolonging and 18 had comfort care goals at birth/diagnosis. Life-prolonging goals were not associated with longer life (p = 0.36) but were associated with more mean hospital days (70 vs. 12, p = 0.01), ICU days (66 vs. 9, p = 0.009), intubation (7/8 vs 7/18, p = 0.04), and death in ICU (7/7 vs. 10/17, p = 0.02). Zero patients underwent cardiac surgery.Conclusion:Parental GOC did not affect length of life in children with complete trisomy, but did alter treatment intensity. This may inform decision making for patients with trisomy 13 or 18.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-30T09:30:08Z
      DOI: 10.1177/1049909120985210
  • Chaplain-Physician Interactions From the Chaplain’s Perspective: A
           Mixed Method Analysis
    • Authors: Sofia Gomez, Christine Nuñez, Betty White, James Browning, Horace M. DeLisser
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The value of healthcare chaplains to patient care is increasingly recognized. However, physicians’ understandings of the role of pastoral care have been reported to be poor, which have raised concerns about the quality of chaplain-physician interactions and their impact on patient care. These interactions, particularly from the perspective of the chaplain, have not been extensively investigated.Methods:An anonymous survey about the interactions of chaplains with physicians was sent to chaplains at a single institution, with subsequent focus group discussions of responding chaplains to obtain additional qualitative data.Results:Quantitative and qualitative data were collected from over 20 chaplains. While chaplains indicated satisfaction regarding their access to physicians, they noted a disconnect between chaplains and physicians, physicians’ unfamiliarity with the chaplain role, a sense that physicians do not always appreciate the chaplain role as significant or helpful, and structural barriers to the integration of chaplains into medical care teams.Conclusions:This study provides contemporary data on the nature of chaplain-physician interactions as reported from the perspective of chaplains. Further, these findings highlight opportunities for interventions to enhance the chaplain-physician relationship.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-30T09:24:47Z
      DOI: 10.1177/1049909120984390
  • Changing the Care Paradigm for Patients: Advanced Illness Beds Care Model
    • Authors: Alexander Rimar, M. Isabel Friedman, Maria G. Quinteros, Rebecca A. Gooch, Kevin D. Masick, Nicholas DaCosta, Rachael L. Spooner
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Over 90 million Americans suffer from advanced illness (AI) and spend their last days of life in critical care units receiving costly, unwanted, aggressive medical care.Objective:Evaluate the impact of a specialized care model in medical/surgical units for hospitalized geriatric patients and patients with complex care requirements where designated AI beds align care with patient’s wishes/goals, minimize aggressive interventions, and influence efficient resource utilization.Design:US based multi-facility retrospective, longitudinal descriptive study of screened positive AI patients in AI Beds (N = 1,237) from 3 facilities from 2015 to 2017.Results:Patient outcomes included 60% referrals to AI beds from ICU, a decrease of 39-49% in average ICU LOS, a 23% reduction of AI bed patient expirations, 9.0% referrals to hospice, and projected cost savings of $4,361.66/patient, US dollars.Conclusion:Allocating AI beds to deliver care to AI patients resulted in a decreased cost of care by reducing overall hospital LOS, mortality, and efficient use of both critical care and hospital resources.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-24T09:55:12Z
      DOI: 10.1177/1049909120984384
  • Preparation for Future Care Needs in Middle-Aged and Older Adults: What
           Promotes Feeling of Preparedness'
    • Authors: Stacy W. Yun, Jeff Greenberg, Molly Maxfield
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:To examine whether demographic, dementia-related, and control-related variables predict preparation for future care needs (PFCN) in a sample of middle-aged and older adults. PFCN is defined in this study as a self-perceived sense of preparedness for one’s own future care needs, including general awareness of future care needs, gathering relevant information, decision-making about care preferences, concrete planning, and non-avoidance of care planning.Methods:Participants (N = 122; age 40 to 88 years: M = 65.83, SD = 9.80) completed self-report measures in an in-person study. Hierarchical multiple regression was calculated to predict PFCN.Results:Being female, having more positive dementia attitudes, higher attribution to powerful others for health condition(s), and more completed end-of-life (EOL) planning significantly predicted greater PFCN.Conclusion:Findings indicate a positive relationship between objective (completed EOL planning items) and subjective (PFCN) components of planning, thus highlighting the importance of taking concrete steps in EOL planning to yield greater feelings of preparedness, which has been associated with positive psychological outcomes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-23T09:49:38Z
      DOI: 10.1177/1049909120981577
  • Continuing Non-Invasive Ventilation During Amyotrophic Lateral
           Sclerosis-Related Hospice Care Is Medically, Administratively, and
           Financially Feasible
    • Authors: Philip J. Choi, Michael Murn, Roberta Turner, Richard Bedlack
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Amyotrophic Lateral Sclerosis (ALS) is a terminal neuromuscular disease with patients dying within 3-5 years of diagnosis. Most patients choose to forego invasive life sustaining measures. Timing of hospice referral can be challenging given the advancement of non-invasive ventilation (NIV) technology.Objective:To describe the characteristics of patients enrolled in hospice from an ALS clinic at 1 academic medical center and to perform a cost analysis for patients who remained on ventilator support.Methods:Retrospective cross-sectional study of patients enrolled in hospice over a 2-year period. Clinical characteristics included ALS Functional Rating Scale Revised (ALSFRS-R) score, Forced Vital Capacity (FVC), use of NIV and mechanical insufflation-exsufflation (MIE), riluzole use, and length of stay in hospice. A cost analysis was performed for patients enrolled in Duke Home Care and Hospice.Results:85 of 104 patients who died were enrolled in hospice. Median days enrolled in hospice was 84. Patients who continued on NIV had similar hospice length of stay as those on no respiratory support (88 versus 80 days, p = 0.83). Bulbar patients had a trend toward shorter length of stay in hospice than limb onset patients (71 versus 101 days, p = 0.49). Cost analysis showed that hospice maintained a mean net operating revenue of $3234.50 per patient who continued on NIV.Conclusions:Hospice referrals for ALS patients on NIV can be challenging. This study shows that even with continued NIV use, most ALS patients die within the expected 6 months on home hospice, and care remains cost effective for hospice agencies.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-17T09:32:03Z
      DOI: 10.1177/1049909120982291
  • Patient-Level Factors Influencing Palliative Care Consultation at a
           Safety-Net Urban Hospital
    • Authors: Minh-Thuy Nguyen, Timothy Feeney, Chanmin Kim, F. Thurston Drake, Suzanne E. Mitchell, Magdalena Bednarczyk, Sabrina E. Sanchez
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The influence of patient-level factors on palliative and hospice care is unclear. We conducted a retrospective review of 2321 patients aged ≥18 that died within 6 months of admission to our institution between 2012 and 2017. Patients were included for analysis if their chart was complete, their length of stay was ≥48 hours, and if based on their diagnoses, they would have benefited from palliative care consultation (PCC). Bayesian regression with a weakly informative prior was used to find the odds ratio (OR) and 99% credible interval (CrI) of receiving PCC based on race/ethnicity, education, language, insurance status, and income. 730 patients fit our inclusion criteria and 30% (n = 211) received PCC. The OR of receiving PCC was 1.26 (99% CrI, 0.73-2.12) for Blacks, 0.81 (99% CrI, 0.31-1.86) for Hispanics, and 0.69 (99% CrI, 0.19-2.46) for other minorities. Less than high school education was associated with greater odds of PCC (OR 2.28, 99% CrI, 1.09-4.93) compared to no schooling. Compared to English speakers, non-English speakers had higher odds of receiving PCC when cared for by medical services (OR 3.01 [99% CrI, 1.44-5.32]) but lower odds of PCC when cared for by surgical services (0.22 [99% CrI,
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-16T10:09:32Z
      DOI: 10.1177/1049909120981764
  • SHARING Choices: A Pilot Study to Engage Family in Advance Care Planning
           of Older Adults With and Without Cognitive Impairment in the Primary Care
    • Authors: Jennifer L. Wolff, Danny Scerpella, Kimberly Cockey, Naaz Hussain, Tara Funkhouser, Diane Echavarria, Jennifer Aufill, Amy Guo, Danetta H. Sloan, Sydney M. Dy, Kelly M. Smith
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Few advance care planning (ACP) interventions proactively engage family or address the needs of older adults with and without cognitive impairment in the primary care context.Objectives:To pilot a multicomponent intervention involving: an introductory letter describing a new clinic initiative and inviting patients to complete a patient-family pre-visit agenda-setting checklist, share their electronic health information with family, and talk about their wishes for future care with a trained ACP facilitator (SHARING Choices).Methods:SHARING Choices was delivered to 40 patient-family dyads from 3 primary care clinics. Facilitators completed post-ACP reports. Patient and family participants completed baseline and 6-week surveys.Results:Patients were on average 75 years (range 65-90). Family were spouses (85.0%) or adult children (15.0%). At 6 weeks, nearly half of dyads participated in ACP conversations (n = 19) or used the agenda-setting checklist (n = 17), one-third (n = 13) registered family to access the patient’s portal account, and most (n = 28) provided the primary care team with a new or previously completed advance directive. Of 12 patients who screened positive for cognitive impairment, 9 completed ACP conversations and 10 provided the clinic with an advance directive. ACP engagement, measured on a 4-point scale, was comparatively lower at baseline and 6 weeks among family (3.05 and 3.19) than patients (3.56 and 3.54). Patients remarked that SHARING Choices clarified communication and preferences while family reported a better understanding of their role in ACP and communication.Conclusion:SHARING Choices was acceptable among older adults with and without cognitive impairment and may increase advance directive completion.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-16T04:17:48Z
      DOI: 10.1177/1049909120978771
  • Multi-Site Study of Provider Self-Efficacy and Beliefs in Explaining
           Judgments About Need and Responsibility for Advance Care Planning
    • Authors: Kristin R. Baughman, Ruth Ludwick, David Jarjoura, Mia Yeager, Denise Kropp
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background and Objectives:We examined the impact of advance care planning (ACP) self-efficacy and beliefs in explaining skilled nursing facility (SNF) provider judgments about resident need and provider responsibility for initiating ACP conversations.Research Design and Methods:This observational multi-site study of 348 registered nurses, licensed practical nurses, and social workers within 29 SNFs used an anonymous survey in which providers judged vignettes with assigned situational features of a typical SNF resident. Mixed modeling was used to analyze the vignette responses.Results:Providers who had more negative beliefs about ACP were less likely to judge residents in need of ACP and less likely to feel responsible for ensuring ACP took place. Self-efficacy did not have a significant impact on judgments of need, but did significantly increase judgments of responsibility for ensuring ACP conversations. Providers with the highest levels of ACP self-efficacy were most likely to feel responsible for ensuring ACP conversations. In an exploratory analysis, these relationships remained the same whether responding to high or low risk residents (i.e., based on risk of hospitalization, type of diagnosis, functional status, and rate of declining health).Discussion and Implications:Both negative beliefs about ACP and self-efficacy in one’s ability to conduct ACP discussions were associated with professional judgments regarding ACP. The findings illustrate the importance of addressing negative beliefs about ACP and increasing provider ACP self-efficacy through education and policies that empower nurses and social workers.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-09T10:00:52Z
      DOI: 10.1177/1049909120979977
  • Appointment of a Healthcare Power of Attorney Among Older Lesbian, Gay,
           Bisexual, Transgender, and Queer (LGBTQ) Adults in the Southern United
    • Authors: Lexus Dickson, Samuel Bunting, Alexis Nanna, Megan Taylor, Liam Hein, Mindi Spencer
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ) older adult population may have a heightened need of medical and supportive care while aging. This makes appointment of a healthcare power of attorney (HCPoA) an essential component of end-of-life care to ensure patients’ wishes are honored at the end of their lives. The objective of this study was to evaluate the prevalence and preferences for HCPoA appointment among older LGBTQ adults living in the Southern United States.Methods:An online survey was distributed to older LGBTQ adults living in the Southern US regarding appointment of a HCPoA between January-March 2018.Participants:The survey was completed by 789 older LGBTQ adults from North Carolina, South Carolina, Georgia, Alabama, Mississippi, Louisiana, and Florida in January-March 2018.Results:Overall, 61.6% of respondents had appointed a HCPoA. Respondents with an appointed HCPoA were more likely to be married (aOR = 5.04, p < .001), have larger social networks (aOR = 3.87, p < .001) and be older (aOR = 1.07, p < .001). Gender diverse respondents were less likely to have an appointed HCPoA relative to cisgender respondents (aOR = 0.39, p = .04). Overall, the majority of respondents indicated a spouse or significant other served as their HCPoA (n = 311, 64.5%).Conclusions:Nearly 40% of older LGBTQ adults in the Southern US did not have an appointed HCPoA. Specifically, those who were more socially isolated, single, or who identified as transgender or gender non-binary were less likely to have an appointed HCPoA. These people may benefit from targeted outreach regarding advance care planning.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-09T09:59:52Z
      DOI: 10.1177/1049909120979787
  • Educating Internal Medicine Residents on Palliative Medicine and Hospice
           Care at a Community Teaching Hospital
    • Authors: Cassandra Nicotra, Martin Barnes, Phyllis Macchio, Greg Haggerty, Carolina De Elia, Alan Kaell
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The Accreditation Council of Graduate Medical Education (ACGME) currently requires Internal Medicine (IM) GME programs to incorporate educational opportunities for training and structured experiences in Palliative and Hospice Medicine. Miscomprehension of the differences between palliative medicine and hospice care is a barrier for IM residents ordering palliative consults as many residents may underutilize palliative medicine if a patient is not appropriate for hospice.Objective:This educational performance improvement (PI) project assessed 3 domains, including Medical Knowledge (MK) of palliative versus hospice medicine at baseline and following a single didactic session. Additionally, the number of palliative consults ordered was used as a surrogate for interpersonal and communication skills (ICS) and patient care (PC) domains.Methods:An 8-question survey and 30-minute didactic session were created based upon experientially-determined issues most confusing to IM residents. Participants included 33 IM residents (PGY-1s-3 s) from July 2018 (first cohort) and 32 (PGY-1 s and any PGY-2s-3 s who did not participate in the first cohort) from July 2019 (second cohort).Results:65 of a possible 73 residents participated (89% response rate) Pre-test Questions 5, 6, and 8 correct responses were
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-09T09:53:51Z
      DOI: 10.1177/1049909120979179
  • Enhancing Care for Long-Term Care Residents Approaching End-of-Life: A
           Mixed-Methods Study Assessing a Palliative Care Transfer Form
    • Authors: Madelaine Baetz-Dougan, Leora Reiter, Laura Quigley, Daphna Grossman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Many barriers exist in providing quality end-of-life care in long-term care (LTC), including transitions of care between acute care and LTC. Transfer forms can be beneficial in ensuring resident’s end-of-life care needs are coordinated between different settings. The NYGH-LTC Transfer Form is a newly developed tool created to enhance care for residents transferred from acute care back to their LTC home for end-of-life.Study Aim:Assess the perceived ease of use, usefulness, and care-enhancing potential of the NYGH-LTC Transfer Form by interprofessional LTC staff.Methods:The study population included interprofessional staff members at 2 LTC homes in Toronto, Canada. Quantitative data was obtained through surveys and qualitative data was obtained through focus groups.Results:There were a total of 34 participants. 79.4% of participants agreed the form was easy to use and 82.4% agreed it would improve care. Subgroup analysis demonstrated that participants with greater than 20 years experience were less likely to agree that it would improve care (p = 0.01). Qualitative analysis generated 4 themes: 1) Strengths, 2) Areas of Improvement, 3) Information Sharing, and 4) Communication.Conclusions:The NYGH-LTC Transfer Form was overall well-evaluated. The form was seen as most useful for those with less experience or less confidence in palliative care. Communication was identified as a major barrier to successful transitions of care and increased bidirectional verbal communication is needed in addition to the form.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-07T09:24:13Z
      DOI: 10.1177/1049909120976646
  • Circumstances Related to Moral Distress in Palliative Care: An Integrative
    • Authors: Carla Corradi-Perini, Julianna Rodrigues Beltrão, Uiara Raiana Vargas de Castro Oliveira Ribeiro
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The practice of palliative care is involved with ethical conflicts related to the life-death process and relief of suffering. The inability to act in the face of such dilemmas, due to internal or external barriers, can cause moral distress in the healthcare professionals.Objective:The purpose of this integrative review is to analyze which circumstances cause moral distress in healthcare professionals who work in palliative care.Methods:An integrative review of the literature was made in the SCIELO and PubMed databases, based on the descriptors “palliative care” and “moral distress.” Articles published between 2015-2020, in Portuguese, Spanish and English were included, following the PRISMA criteria.Results:From a selection of 97 documents, 56 were completed reviewed and 23 studies were included in the review. Most articles refer to the nursing area, followed by multidisciplinary studies. The circumstances related to moral distress were identified involving: personal aspects; patients and caregivers; team; environment and organization. Communication problems, lack of resources and witnessing professionals giving false hope to patient and family members were the events related to moral distress most mentioned by the articles in the review. Recommendations for reducing and preventing moral distress include empowerment and educational programs in bioethics and palliative care.Conclusions:Moral distress is an evident phenomenon in palliative care, involving different situations that can impact on quality-of-care provided as well as the well-being of the healthcare professionals.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-07T09:23:34Z
      DOI: 10.1177/1049909120978826
  • The Impact of Obesity in End of Life Care in Patients With End Stage Liver
           Disease: An Observational Study
    • Authors: Kavitha Subramoney, Eric Orman, Amy W. Johnson, Areeba Kara
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Both obesity and end stage liver disease (ESLD) are increasing. Obesity’s impact on hospice and palliative care in patients with ESLD is unknown.Methods:We retrospectively evaluated patients admitted to an academic, Midwestern, tertiary center between January 2016 and May 2019 with a diagnosis of ESLD. Body Mass Index and MELD Na were calculated for each patient’s first admission during the study period. Patients with MELD Na scores ≥ 21 or 18-20 with additional criteria were considered potentially eligible for hospice and palliative care referrals.Results:Of 3863 patients admitted with ESLD, 1556 (40%) were potentially eligible for hospice and palliative care referrals. Of these, 703 (45%) were obese. Comorbidity burden was higher in obese patients (15.6% of obese patients had a Charlson Comorbidity Index ≥ 5, while 5% of non-obese patients had a comorbidity index of ≥ 5 (p < 0.001). Referral rates to hospice and palliative services in obese patients were 10.1% and 16.4% respectively. Hospice and palliative referral rates among non-obese patients were similar (10.1% and 15.5%). Among patients who died within 6 months of the first hospitalization, the mean time to referral to hospice or palliative care from index admission was longer in obese patients.Conclusion:Obesity is common in patients hospitalized with ESLD who may be approaching the end of life. Referral rates to hospice and palliative care services are low and similar regardless of BMI and despite higher co-morbidity burdens in obese patients. Obesity may delay referrals to hospice and palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-07T09:22:33Z
      DOI: 10.1177/1049909120978768
  • Lay Health Workers’ Perspectives on Delivery of Advance Care Planning
           and Symptom Screening Among Adults With Cancer: A Qualitative Study
    • Authors: Manali I. Patel, Sana Khateeb, Tumaini Coker
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Advance care planning and symptom screening among patients with cancer require team-based approaches to ensure that these services are equitably and appropriately delivered. In several organizations across the United States, we trained and employed lay health workers (LHWs) to assist with delivering these services for patients with cancer. The aim of this study was to understand LHWs’ views on delivering these services.Methods:We conducted semi-structured interviews with 22 LHWs in 6 US-based clinical cancer care settings in 4 large cities. We recorded, transcribed, and analyzed interviews using the constant comparative method of qualitative analysis.Results:Participants noted the importance of their role in assisting with the delivery of advance care planning (ACP) and symptom screening services. Participants noted the importance of developing relationships with patients to engage openly in ACP and symptom screening discussions. Participants reported that ongoing training provided skills and empowered them to discuss sensitive issues with patients and their caregivers. Participants described challenges in their roles including communication with oncology providers and their own emotional well-being. Participants identified solutions to these challenges including formal opportunities for introduction with oncology clinicians and staff and grievance sessions with LHWs and other team members.Discussion:LHWs from several organizations endorsed the importance of their roles in ensuring the delivery of ACP and proactive symptom screening. LHWs noted challenges and specific solutions to improve their effectiveness in delivering these important services to patients after their diagnosis of cancer.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-03T09:14:40Z
      DOI: 10.1177/1049909120977841
  • Predictive Factors of Death on Hospitalization in Patients With Advanced
           Cancer in Palliative Care
    • Authors: Karla Santos da Costa Rosa, Raphael de Paiva Cypriano, Nathália Masiero Albuquerque, Livia Costa de Oliveira
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Prognostic assessment is essential to plan the care of patients with advanced cancer in palliative care.Objective:Thus, this study aims to assess the predictors of death in inpatients with advanced cancer in palliative care.Methods:This is a clinical, observational cohort study with patients aged>20 years, of both genders, evaluated within 48 hours of the first hospitalization. The independent variables were tumor location, nutritional risk [through the Patient-Generated Subjective Global Assessment (PG-SGA) short form], laboratory tests [C-reactive protein and albumin] and Karnofsky Performance Status (KPS). Logistic regression analyses were performed.Results:Eighty-two patients were evaluated, whose mean age was 61.8 (± 13.2) years. Forty-nine (59.8%) patients died during hospitalization, among which the majority had KPS of 30-40% (p-value = 0.043), higher means of the total score of the PG-SGA (p-value = 0.050) and lower serum albumin concentrations (p-value = 0.011). According to the multivariate model, tumor location in the gastrointestinal (GI) tract (OR: 1.73; 95% CI: 1.57 -1.94), 30-40% KPS (OR: 1.29; 95% CI: 1.07 -1.63) and albumin concentrations
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-03T09:06:20Z
      DOI: 10.1177/1049909120976398
  • Patient Safety in Palliative and End-of-Life Care: A Text Mining Approach
           and Systematic Review of Definitions
    • Authors: Anna J. Pedrosa Carrasco, Christian Volberg, David J. Pedrosa, Daniel Berthold
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Patient safety has gained an increasing profile as a crucial element of healthcare. However, not only is there little evidence on the relevance of the term in the palliative and end-of-life care literature but also a lack of a precise and uniform definition.Method:With a text mining approach occurrence of the term patient safety was determined in all available abstracts of 10 palliative and end-of-life care journals. Furthermore, 4 electronic databases (MEDLINE, EMBASE, CINAHL and PSYCINFO) were searched supplemented by hand-searching of relevant literature to identify and conceptualize published definitions of patient safety in the palliative and end-of-life care context. Publications were independently assessed against inclusion criteria by 2 authors.Results:Our search of 14,351 abstracts yielded 41 hits for “patient safety” ranking 2,345 in the list of most commonly encountered tokens. We identified 11 definitions of patient safety stemming from 11 publications. Definitions differed with regard to the concept of process or outcome. They also allowed distinctive perspectives on the extent to which patient care influences patient safety. Lastly, exact wording led to discrepancies in the understanding of unsafe care and generalizability of definitions.Conclusion:Our results indicate that patient safety has gradually gained importance in palliative and end-of-life care. However, as key elements of definientia varied considerably no consensus definition could be identified. Nevertheless, a universal definition would help to facilitate communication and exchange of information among individuals and organizations involved in palliative and end-of-life care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-03T08:55:37Z
      DOI: 10.1177/1049909120971825
  • Are We Getting What We Really Want' A Systematic Review of Concordance
           Between Physician Orders for Life-Sustaining Treatment (POLST)
           Documentation and Subsequent Care Delivered at End-of-Life
    • Authors: Aluem Tark, Jiyoun Song, Jyotsana Parajuli, Sena Chae, Patricia W. Stone
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Physician Orders for Life-Sustaining Treatments (POLST) is an advance care planning (ACP) tool that is designed to facilitate End-of-Life (EoL) care discussions between a medical provider and a terminally ill patient. It is often used as a tool to translate care wishes into a medical order, which can be honored across healthcare settings. With an increased utilization of the POLST paradigm in various healthcare settings along with continued dissemination across the nation, it is critical to examine whether documented wishes on POLST are concordant with subsequent care delivered. Purpose of this article was to examine concordance rate between POLST and subsequent care delivered in any care settings and communities.Design:Systematic review.Results:Of 1,406 articles identified, 10 articles met inclusion criteria. Together, included studies represent 5,688 POLST forms reviewed from individuals residing in a total of 126 nursing care facilities, 9 elderly care centers, 4 community settings, and 2 hospitals. Preference for cardiopulmonary resuscitation and actual delivery/ withholding of resuscitation was the most observed intervention in study of concordance (n = 8). It is also where highest concordance rate (97.5%) was reported. Seven studies compared care provided during EoL and the level of medical intervention requested on POLST forms (91.17% concordance). Preference to use artificial nutrition/ hydration, and actual delivery was 93.0% (n = 4 studies), and antibiotics use preference and delivery was 96.5% (reported in 4 studies).Conclusion:Published literature evidence suggests that EoL care wishes documented on POLST forms were largely concordant with subsequent care delivered. Additional research is needed to evaluate concordance between POLST documentation and care received among POLST users, who experienced multiple care transitions across healthcare settings, or across state during EoL care journey.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-29T06:49:06Z
      DOI: 10.1177/1049909120976319
  • Health Care Provider Barriers to Patient Referral to Palliative Care
    • Authors: Susan Enguidanos, Valeria Cardenas, Melissa Wenceslao, Deborah Hoe, Kiara Mejia, Sindy Lomeli, Anna Rahman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:The purpose of this study was to explore healthcare provider-perceived challenges to HBPC patient referral and elicited providers’ feedback for overcoming these challenges.Methods:We conducted a qualitative study using semi-structured interviews with 25 Medicaid managed care providers (primary care physicians, nurse practitioners, and care managers) working in the greater Los Angeles area. Our interview protocol elicited providers’ knowledge and awareness of palliative care; perceived barriers to HBPC referral; and suggestions for overcoming these barriers. We analyzed verbatim transcripts using a grounded theory approach.Results:Themes related to referral barriers included providers’ lack of palliative care knowledge and clarity regarding referral processes, provider reluctance to refer to HBPC, and provider culture. Providers also identified patient-level barriers, including financial barriers, reluctance to have home visits, health literacy, cultural barriers, and challenges related to living situations. Themes related to methods for overcoming challenges included increased HBPC education and outreach to providers, specifically by HBPC agency staff.Conclusions:Findings from this study underscore the need for additional palliative care education for Medicaid healthcare providers. They point to the need for novel strategies and approaches to address the myriad barriers to patient identification and referral to HBPC.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-23T09:30:57Z
      DOI: 10.1177/1049909120973200
  • Non-Squamous, Non-Basal Cell Cancers of the Skin: Exploring Associations
           Between Site of Disease and Depression
    • Authors: Yahya Almodallal, Minji K. Lee, Jennifer G. Le-Rademacher, Caleb J. Smith, Jamie L. Carroll, Steven I. Robinson, Aminah Jatoi
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Earlier studies report a direct association between diseases of the skin—particularly those on the face—and depression. However, to our knowledge, such associations have not been examined in patients with non-squamous, non-basal call skin cancers.Methods:The primary goal was to assess whether malignant skin disease—specifically on the face as opposed to other sites—was associated with depression. The medical records of patients with cutaneous cancer (either primary or metastatic but non-squamous, non-basal cell) were reviewed for the relevant data.Results:One hundred and sixty-five patients were studied. Only 23 patients (14%) had metastases to the face, and 115 (70%) had a readily viewable skin cancer. Twenty-one patients (13%) developed depression after a diagnosis of cutaneous cancer (of note, the rate of missing data for depression was 37%). Only one patient with facial cutaneous cancer manifested depression, yielding an odds ratio for not developing depression (95% confidence interval (CI)) of 4.4 (0.5,35); p = 0.13. Depression appeared to occur more often in women (62% versus 43%), patients with a history of depression (52% versus 6%), and younger patients (median age with and without depression 55 years and 67 years, respectively).Conclusion:In contrast to other cutaneous diseases, no association was found between cutaneous cancer to the face and depression. Nonetheless, high rates of missing data underscore the need to focus on depression in patients with cutaneous cancers in the future.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-16T06:10:42Z
      DOI: 10.1177/1049909120969605
  • Feasibility and Acceptability of Digital Legacy-Making: An Innovative
           Story-Telling Intervention for Adults With Cancer
    • Authors: Susan DeSanto-Madeya, Jennifer Tjia, Christina Fitch, Amy Wachholtz
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures.Method:We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cancer Therapy—General (FACT-G), Patient Dignity Inventory (PDI), Hospital Anxiety and Depression Scale (HADS), and Emotional Thermometers for distress, anxiety, anger, help and depression. Participants received a final copy of the digital video for distribution to their families.Results:Adults (n = 16) ages 38-83 years old with an advanced or life-limiting cancer diagnosis completed an intervention. Feasibility and acceptability was strong with 0% attrition. While the pilot study was not powered for quantitative significance, there were changes from baseline to post-intervention in the participants’ total or subscale FACT-G scores, PDI, HADS anxiety or depression scores, and Emotional Thermometer scores.Conclusions:A digital video legacy-making intervention is feasible for adults with cancer without significant negative outcomes for individuals completing the study. It remains unclear whether this intervention contributes to positive quality of life outcomes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-10T08:50:18Z
      DOI: 10.1177/1049909120971569
  • Integrating Medical Students in Tele-Palliative Care
    • Authors: Barbara Chow, Kathrine S. Rallis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-10T08:42:12Z
      DOI: 10.1177/1049909120973199
  • Advanced Care Planning and End-of-life Outcomes in Hematopoietic Stem Cell
           Transplant Patients
    • Authors: Alexandra Cooper, Joyce E. Dains
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Aim/Purpose:This integrative review addresses whether the presence and timing of advanced care planning (ACP) with or without a palliative care (PC) consultation affect place of death and use of high-intensity medical care at end-of-life (EOL) in adolescent and young adult and adult cancer patients receiving hematopoietic stem cell transplant (HSCT) therapy.Methods and Results:A literature search was completed in the Scopus and PubMed databases. The search was not restricted by date but was restricted to English language. A total of 1,616 articles were found, and after exclusion of duplicates and irrelevance, 79 articles were available to review. After reviewing inclusion and exclusion criteria, 9 articles related to ACP with HSCT were found, and 4 were eliminated after further review, resulting in 5 viable articles for review related to EOL outcomes. EOL outcomes reviewed were place of death and high-intensity medical care. Factors noted to influence these measures included the presence or absence of ACP, the timing of ACP, and PC consultation. Overall survival also emerged as an EOL outcome affected by ACP.Conclusion:Although there have been many barriers identified to ACP discussions in the HSCT population, the findings from the integrative literature review support the use of early ACP with patients who have hematologic malignancies undergoing HSCT to address patient EOL goals and reduce healthcare utilization at the EOL. The data also suggest that identification of patients who would most benefit from early engagement in ACP may positively impact outcomes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-09T09:39:33Z
      DOI: 10.1177/1049909120971566
  • Access to Palliative Care Services and Clinical Outcomes of Patients With
           Solid Malignancy-Associated Myelophthisis in a Resource-Limited Setting
    • Authors: Cesar Vargas-Serafin, Aldo A. Acosta-Medina, Kevin Teran-De-la-Sancha, Jesus Delgado-de-la-Mora, María T. Bourlon, Christianne Bourlon
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Myelophthisis (MPT) has been associated with a dreadful prognosis. Patients’ access to palliative care (PC) and factors influencing its clinical outcomes are poorly described. Our aim was to analyze the impact of patient- and disease-specific characteristics on survival of patients with MPT and describe their use of PC in a resource-limited setting.Methods:Retrospective study including patients with solid tumor MPT, diagnosed between 1996 and 2018.Results:Seventy patients (median 58 years) were included. 58% were synchronously diagnosed with MPT at time of primary tumor diagnosis. Most common oncologic diagnoses were prostate (25.7%), gastrointestinal (20%), and breast (18.6%) neoplasms. Median overall survival (OS) was 1.9 months. Primaries other than prostate, breast, and lung (HR 1.37, 95% CI 1.15 - 1.8; p = 0.02) and transfusion requirements (HR 2.8, 95% CI 1.01 – 7.9; p = 0.04) were independently associated with decreased OS. Administration of multiple systemic therapeutic interventions (HR 0.15, 95% CI 0.06 – 0.39; p = 0.01) was the sole factor improving OS. Assessment by PC was pursued in 51.4% of patients. The median number of consults per patient was two, with no difference in assessment rate or consult number across different primaries (P = 0.96). Four cases of palliative sedation were reported, all performed by the primary care team.Conclusion:MPT is highly heterogeneous and risk stratification to optimize the use of therapeutic interventions in unison with palliative interventions is needed to maximize efforts toward improving patient quality of life. There is an alarming need of PC services in the multidisciplinary management of patients within developing regions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-09T09:19:20Z
      DOI: 10.1177/1049909120969963
  • Financial Hardship and Health Related Quality of Life Among Older Latinos
           With Chronic Diseases
    • Authors: Frances R. Nedjat-Haiem, Tamara Cadet, Humberto Parada, Tessa Jones, Elvira E. Jimenez, Beti Thompson, Kristen J. Wells, Shiraz I. Mishra
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Financial hardship influences health-related quality of life (HRQoL) of older adults. However, little is known about the relationship between financial hardship and HRQoL among vulnerable populations.Objective:We examined the associations between financial hardship and HRQoL among older Latinos living with chronic disease, including cancer.Methods:This cross-sectional study included 68 Latinos (age range 50-87) with one or more chronic health conditions who participated in a pilot randomized clinical trial. Participants responded to 11 financial hardship questions. We used factor analysis to explore constructs of financial hardship. HRQoL was assessed using the 27-item Functional Assessment of Cancer Therapy-General (FACT-G). Multiple linear regression examined the associations between financial hardship and HRQoL subscales (physical, social/family, emotional, functional well-being).Results:The factor analysis revealed 3 constructs of financial hardship: medical cost concerns, financial hardship treatment adherence, and financial worry. A 1-point increase in the factor score for financial hardship treatment adherence was associated with a 2.1-point (SE = 0.771) decrease in physical well-being and with a 1.71-point (SE = 0.761) decrease in functional well-being. A 1-point increase in the financial stress factor score was associated with a 2.0-point (SE = 0.833) decrease in social/family well-being, and with a 2.1-point (SE = 0.822) decrease in functional well-being.Conclusion:In this study of older Latinos with chronic diseases, financial hardship was associated with worse HRQoL across several domains. Healthcare providers should refer older Latinos living with chronic disease to appropriate support providers, such as care coordinators, social workers, or patient navigators, who can assist them with obtaining financial assistance and other resources.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-06T09:55:35Z
      DOI: 10.1177/1049909120971829
  • A Multicenter Qualitative Analysis of Medical Student Narratives After a
           Palliative Care Elective
    • Authors: Alana Sagin, Matthew S. Ellman, Ruhi R. Shariff, Christopher A. Jones, Kate Tindall, Caitlin H. Siropaides
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The medical student experience of a clinical elective in palliative care (PC) remains understudied. Reflective narrative interventions can help students hone narrative competency skills, make sense of their clinical experiences and shed light on their perception of the rotation.Objectives:To evaluate medical student written reflections after a PC clinical elective.Design:Students were asked to write a short reflective essay after PC clinical electives using open-ended writing prompts.Setting:Essays were collected from third and fourth-year medical students after completion of a PC elective at three geographically diverse academic medical centers in the United States.Measurements:Essays were coded for themes using a conventional content qualitative method of analysis.Results:Thirty-four essays were analyzed and four major themes emerged: reflection on the mission of medicine or motivation for being in medicine, reflection on professional skills or lessons learned, reflection on patient’s experience and personal responses to PC rotation. Sub-themes were also identified.Conclusions:Themes underscore the utility of the PC clinical elective as a meaningful experience that imparts useful skills, builds empathy, reminds students of their own motivations for being in medicine and serves as a catalyst for reflection on their own lives and relationships with their patients. Awareness of medical students’ personal and emotional responses to a PC elective can help inform educators as they support their students and provide opportunities for reflection and education.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-04T09:31:45Z
      DOI: 10.1177/1049909120971565
  • Barriers to Addressing the Spiritual and Religious Needs of Patients and
           Families in the Intensive Care Unit: A Qualitative Study of Critical Care
    • Authors: Christian K. Alch, Christina L. Wright, Kristin M. Collier, Philip J. Choi
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:Though critical care physicians feel responsible to address spiritual and religious needs with patients and families, and feel comfortable in doing so, they rarely address these needs in practice. We seek to explore this discrepancy through a qualitative interview process among physicians in the intensive care unit (ICU).Methods:A qualitative research design was constructed using semi-structured interviews among 11 volunteer critical care physicians at a single institution in the Midwest. The physicians discussed barriers to addressing spiritual and religious needs in the ICU. A code book of themes was created and developed through a regular and iterative process involving 4 investigators. Data saturation was reached as no new themes emerged.Results:Physicians reported feeling uncomfortable in addressing the spiritual needs of patients with different religious views. Physicians reported time limitations, and prioritized biomedical needs over spiritual needs. Many physicians delegate these conversations to more experienced spiritual care providers. Physicians cited uncertainty into how to access spiritual care services when they were desired. Additionally, physicians reported a lack of reminders to meet these needs, mentioning frequently the ICU bundle as one example.Conclusions:Barriers were identified among critical care physicians as to why spiritual and religious needs are rarely addressed. This may help inform institutions on how to better meet these needs in practice.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-04T09:30:45Z
      DOI: 10.1177/1049909120970903
  • Buccal Hydromorphone Syrup for Managing Dyspnea in Idiopathic Pulmonary
    • Authors: Shannon Fong, Janice Richman-Eisenstat, Meena Kalluri
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Dyspnea is a highly distressing symptom that characterizes idiopathic pulmonary fibrosis (IPF), a common idiopathic interstitial lung disease (ILD) with a high symptom burden, poor quality of life, and early mortality. Though opioids are mentioned in guidelines for dyspnea management, guidance on how and when to initiate opioids is lacking. Different pharmacologic strategies are needed to address different types of dyspnea (baseline, incident, and crisis). Due to a longer onset of action, the oral route (swallowed) may be less effective for prevention of incident dyspnea or for rapid relief of crisis dyspnea, prompting the use of alternative drug delivery strategies for self-management. We inadvertently discovered the efficacy of buccal administration of low dose, low volume hydromorphone oral syrup for dyspnea management in ILD, which has not been previously reported in the literature.Case Series:We describe our approach to dyspnea assessment and management in IPF, including use of the Multidimensional Dyspnea Scale (MDDS), a novel instrument yet to be validated that we developed to better identify and categorize dyspnea into the types experienced by a patient with IPF over the course of a day. We then describe how buccal hydromorphone oral syrup is initiated and titrated for dyspnea management in 3 patients at different points in their disease trajectory.Conclusion:Buccal hydromorphone oral syrup is effective for dyspnea management across the spectrum of IPF. When integrated into a patient-centered algorithm for symptom assessment and management, it allows for rapid and easy self-management of dyspnea by patients and their caregivers.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-03T09:52:55Z
      DOI: 10.1177/1049909120969126
  • End Stage Chronic Pain (ESCP): Naming Complex Suffering in the Opioid
           Crisis Era
    • Authors: George Comerci, Lisa Marr, Esme Finlay
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The “opioid crisis” stemming from overprescribing of prescription opioids describes an iatrogenic situation which has resulted in a rise in opioid use disorder (OUD) and overdose deaths. Many of these patients suffer from chronic non-cancer pain syndromes (CNCP) who have been injudiciously treated with opioids. Some patients with CNCP are treated successfully with opioids in accordance with modern guidelines. There is a very complex, small group of patients with CNCP who require higher than recommended dosages of opioids when other modalities and treatments have failed. We describe such a patient and believe that there is a subset of patients with unremitting suffering from chronic pain which we have called end-stage chronic pain (ESCP). These patients, despite receiving expert chronic pain care, often require high doses of opioids and suffer a dramatic decline in quality of life (QOL), function and an increase in their suffering when their opioids are tapered or discontinued. We have responded to the treatment of this group of patients by critically examining our approach to the use of opioids for their pain and attempting to reconcile high dose opioids in the setting of the Center for Disease Control (CDC) guidelines. We describe a patient with severe chronic pain from congenital spinal disease who experienced increased pain and suffering when his opioids were tapered. We will discuss our approach to this patient and in doing so discuss the concept of ESCP and proposed criteria for the use of high dose opioids in such patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-30T09:23:20Z
      DOI: 10.1177/1049909120969623
  • Barriers to High Quality End of Life Care in the Surgical Intensive Care
    • Authors: Ricardo Diaz Milian
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      End of life discussions frequently take place in surgical intensive care units, as a significant number of patients die while admitted to the hospital, and surgery is common during the last month of life. Multiple barriers exist to the initiation of these conversations, including: miscommunication between clinicians and surrogates, a paternalistic approach to surgical patients, and perhaps, conflicts of interest as an unwanted consequence of surgical quality reporting. Goal discordant care refers to the care that is provided to a patient that is incapacitated and that is not concordant to his/her wishes. This is a largely unrecognized medical error with devastating consequences, including inappropriate prolongation of life and non-beneficial therapy utilization. Importantly, hospice and palliative care needs to be recognized as quality care in order to deter the incentives that might persuade clinicians from offering these services.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-29T10:09:32Z
      DOI: 10.1177/1049909120969970
  • The Role of Regional and State Initiatives in Nursing Home Advance Care
           Planning Policies
    • Authors: Caroline J. Fu, Mansi Agarwal, Leah V. Estrada, Komal P. Murali, Denise D. Quigley, Andrew W. Dick, Patricia W. Stone
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:Antibiotic use at the end of life (EoL) may introduce physiological as well as psychological stress and be incongruent with patients’ goals of care. Advance care planning (ACP) related to antibiotic use at the EoL helps improve goal-concordant care. Many nursing home (NH) residents are seriously ill. Therefore, we aimed to examine whether state and regional ACP initiatives play a role in the presence of “do not administer antibiotics” orders for NH residents at the EoL.Methods:We surveyed a random, representative national sample of 810 U.S. NHs (weighted n = 13,983). The NH survey included items on “do not administer antibiotics” orders in place and participation in infection prevention collaboratives. The survey was linked to state Physician Orders for Life-Sustaining Treatment (POLST) adoption status and resident, facility, and county characteristics data. We conducted multivariable regression models with state fixed effects, stratified by state POLST designation.Results:NHs in mature POLST states reported higher rates of “do not administer antibiotics” orders compared to developing POLST states (10.1% vs. 4.6%, respectively, p = 0.004). In mature POLST states, participation in regional collaboratives and smaller NH facilities (
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-28T09:44:18Z
      DOI: 10.1177/1049909120970117
  • Palliative Care Consults in an Inpatient Setting for Patients With
           Amyotrophic Lateral Sclerosis
    • Authors: Ambereen K. Mehta, Nicholas J. Jackson, Martina Wiedau-Pazos
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Limited data about the frequency and outcomes of palliative care (PC) specialty consultations for patients with amyotrophic lateral sclerosis (ALS) are available.Methods:This study was a retrospective chart review. Patients with ALS admitted to 2 academic hospitals from 2013-2018 were included. We compared patients who were seen by an inpatient specialty PC service (PC group) with those who were not (NonPC group).Results:Twenty-four patients met inclusion criteria (9 PC group, 15 NonPC group). Patients in both groups were similar in age and had been diagnosed for a similar amount of time before admission. In the PC group, 6 patients were seen by more than 1 PC multidisciplinary team member (physician, social worker, spiritual care provider, clinical nurse specialist). PC consultations were requested for goals of care (GOC) (n = 7), pain (n = 4), hospice information/referral (n = 2), dyspnea (n = 1), and excessive oral secretions (n = 1). GOC topics addressed for both groups were code status, treatment preferences (tracheostomy placement, percutaneous endoscopic gastrostomy placement, change to comfort care), prognostication, and hospice information/referral. Patients in the PC group were significantly more likely to be discharged with GOC (89%, p = 0.02) and completed advance care planning (ACP) documents (89%, p = 0.04) than patients in the NonPC group (32%; 47%). Despite reason for consultation, at least 1 symptom was addressed for every patient seen by PC specialists.Conclusions:Inpatient specialty PC consultation for patients with ALS leads to greater documentation of GOC and ACP by discharge. PC consultants participate in symptom management in patients with ALS during hospitalization.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-28T09:42:55Z
      DOI: 10.1177/1049909120969959
  • Evolving Goals of Care Discussions as Described in Interviews With
           Individuals With Advanced Cancer and Oncology and Palliative Care Teams
    • Authors: Ellis C. Dillon, Amy Meehan, Catherine Nasrallah, Steve Lai, Natalia Colocci, Hal Luft
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.Objective:To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).Design:The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.Setting/Subjects:Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.Results:At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis (“How much time do I have'”). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were “going downhill.”Conclusion:Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-28T09:42:15Z
      DOI: 10.1177/1049909120969202
  • End-of-Life Experiences (ELEs) of Spiritual Nature Are Reported Directly
           by Patients Receiving Palliative Care in a Highly Secular Country: A
           Qualitative Study
    • Authors: Stina Nyblom, Maria Arnby, Ulla Molander, Inger Benkel
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients’ subjective experiences.Design:Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit.Results:Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences.Conclusions:End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-28T09:41:15Z
      DOI: 10.1177/1049909120969133
  • Chemotherapy in the Last 30 Days and 14 Days of Life in African Americans
           With Lung Cancer
    • Authors: Lee Ann Johnson, Charles Ellis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:African Americans with lung cancer are diagnosed at later stages and have high mortality rates. Chemotherapy is considered aggressive treatment near the end of life and prevents enrollment in hospice.Objectives:This study explored chemotherapy in the last 30 and 14 days of life among African Americans with lung cancer.Methods:A retrospective chart review was used to gather sociodemographic and treatment data on persons newly diagnosed with lung cancer between January 1, 2016 and June 30, 2017. African Americans with a documented date of death were included.Results:The mean age (N=74) was 64.0 years, 58.1% were rural dwellers, and 59.5% had Medicare. Most had advanced stage non-small cell lung cancer (Stage IIIB, 18.8%; Stage IV, 46.4%). In this study, 17.6% received chemotherapy in the last 14 days of life and 27.0% received chemotherapy in the last 30 days of life. No significant associations between age, sex, residence (rural vs urban) and receipt of chemotherapy in the last 14 or 30 days of life were found. A significant association was found between type of insurance and chemotherapy in the last 14 or 30 days of life: Medicare was associated with chemotherapy in both last 14 days of life χ2(1) = 4.448, p = .035 and last 30 days of life χ2(1) = 4.773, p = .029. A binomial logistic regression using demographic factors, including insurance, was not significant.Conclusion:Our results indicate a need for improvement in the number of individuals who receive chemotherapy in the final month of life.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-28T09:39:53Z
      DOI: 10.1177/1049909120969125
  • Too Much Too Late' Chemotherapy Administration at the End of Life: A
           Retrospective Observational Study
    • Authors: David H. Wilkerson, Jennifer L. Santos, Xiyan Tan, Teny Henry Gomez
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Cancer treatment for those nearing death has become increasingly aggressive over time despite evidence that less aggressive approaches are associated with better quality of life and sometimes longer survival. Chemotherapy administration in the last 14 days of life is one of the proposed benchmarks for quality of cancer care. The purpose of our study is to evaluate factors associated with aggressive cancer treatment in patients who died within 2 weeks of receiving chemotherapy.Methods:This retrospective cohort study evaluated adult patients who died between 1 February 2018 and 1 March 2019 after receiving cancer treatment in the preceding 14 days at the Prisma Health Cancer Institute. This project was approved by our institutional review board. Data was obtained by review of electronic medical records and analyzed using commercial software.Results:We identified 92 patients who met inclusion criteria for the study. Of those who were staged, 57% had metastatic disease. A majority received treatments with only palliative intent (54%). These patients overwhelmingly died in the hospital (62%). Few had documented advanced directives (28%) or dedicated palliative care for longer than 1 week (28%). Overall, this cohort reflects a rate of 11.7% of patients who received cancer treatment during the study time period.Significance of Results:Patients receiving aggressive cancer treatment at the end of life elucidate significant gaps in quality cancer care, particularly the early involvement of dedicated palliative care. Systematic review helped identify multiple gaps and assisted in implementing interventions to improve this outcome.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-28T09:17:03Z
      DOI: 10.1177/1049909120966619
  • “I’m Dealing With That”: Illness Concerns of African American and
           White Cancer Patients While Undergoing Active Cancer Treatments
    • Authors: Salimah H. Meghani, Kristin Levoy, Kristin Corey Magan, Lauren T. Starr, Liana Yocavitch, Frances K. Barg
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory.Objective:To describe cancer patients’ concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites.Methods:A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis.Results:Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity).Conclusions:The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients’ capacity toward a more patient-centered treatment and care experience.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-27T10:25:19Z
      DOI: 10.1177/1049909120969121
  • Parents With Advanced Cancer: Worries About Their Children’s
           Unspoken Concerns
    • Authors: Mary Ellen Shands, Frances Marcus Lewis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Parents with advanced cancer struggle initiating conversations with their children about the cancer. When parents do not have the tools to talk with their children, they silently watch their children attempt to navigate their illness but can only wonder but not know what their children are thinking. The objective of the current study is to describe, from parents living with advanced cancer, the worries and concerns parents wonder their child holds, but has not spoken, about the parent’s cancer.Methods:Twenty-seven parents with incurable cancer enrolled in a 5 session telephone intervention pilot study during which they were asked, “What questions do you have about what your child is thinking or feeling about the cancer'” Data were transcribed and inductively coded using content analysis methods adapted from grounded theory.Results:Analysis yielded 14 categories of parent concerns organized into 6 larger conceptual domains: Being Concerned and Scared about My Cancer; Worrying about Me; Changing How We Talk and Live Day-to-Day; Not Knowing What Will Happen; Having Unanswered Questions about My Cancer; and Understanding My Disease Is Terminal.Conclusions:Study results add to our understanding of the magnitude of the emotional burden parents with advanced cancer carry as they struggle to balance their diagnosis and treatment and their life as parents.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-27T10:23:35Z
      DOI: 10.1177/1049909120969120
  • Organizational Characteristics of Assisted Living Communities With
           Policies Supportive of Admitting and Retaining Residents in Need of
           End-of-Life Care
    • Authors: Leanna Jean Travis, Kali S. Thomas, Melissa A. Clark, Emmanuelle Belanger
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There has been a rapid increase in the number of residential care/assisted living communities (RC/AL) that allow residents to die in place. The objective of this study was to examine the organizational characteristics of RC/AL communities that are associated with facility-level policies supportive of admitting and retaining residents in need of end-of-life (EOL) care.Methods :We used cross-sectional data from the 2010 National Survey of Residential Care Facilities. Organizational characteristics included structural factors, staffing levels, and other relevant facility-level policies. We examined descriptive statistics, binomial and multivariable multinomial regression models to determine the likelihood of 1) admitting and retaining, or 2) only retaining, as compared to 3) neither admitting nor retaining AL residents in need of EOL care.Results:A majority of residential care facilities 73.7% (n = 22,642) reported admitting and retaining residents at EOL. Yet, levels of skilled nursing care were generally low with 60.9% of these RC/AL communities reporting that registered nurses were not available, including hospice staff. In multivariable, multinomial regression models, organizational characteristics such as skilled nursing, hands-on contact hours from personal care aides, and policies allowing exemptions to self-evacuation rules were associated with increased likelihood of RC/AL communities admitting/retaining residents in need of EOL care.Conclusion:Despite overall low levels of skilled nursing care, a nationally representative survey revealed that a majority of RC/AL communities admit and retain residents in need of EOL care. Staffing and exemptions from self-evacuation policies appear to be central characteristics associated with the provision of these services in RC/AL communities.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-22T09:15:53Z
      DOI: 10.1177/1049909120968254
  • The Association of Advance Care Planning Documentation and End-of-Life
           Healthcare Use Among Patients With Multimorbidity
    • Authors: Cara L. McDermott, Ruth A. Engelberg, Nita Khandelwal, Jill M. Steiner, Laura C. Feemster, James Sibley, William B. Lober, J. Randall Curtis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Multimorbidity is associated with increased intensity of end-of-life healthcare. This association has been examined by number but not type of conditions. Our purpose was to understand how intensity of care is influenced by multimorbidity within specific chronic conditions to provide guidance for interventions to improve end-of-life care for these patients.Methods:We identified adults cared for in a multihospital healthcare system who died between 2010–2017. We categorized patients by 4 primary chronic conditions: heart failure, pulmonary disease, renal disease, or dementia. Within each condition, we examined the effect of multimorbidity (presence of 4 or more chronic conditions) on hospital and ICU admission in the last 30 days of life, in-hospital death, and advance care planning (ACP) documentation>30 days before death. We performed logistic regression to estimate associations between multimorbidity and end-of-life care utilization, stratified by the presence or absence of ACP documentation.Results:ACP documentation>30 days before death was associated with lower odds of in-hospital death for all 4 conditions both in patients with and without multimorbidity. With the exception of patients with renal disease without multimorbidity, we observed lower odds of hospitalization and ICU admission for all patients with ACP>30 days before death.Conclusions:Patients with dementia and multimorbidity had the highest odds of high-intensity end-of-life care. For patients with dementia, heart failure, or pulmonary disease, ACP documentation>30 days before death was associated with lower likelihood of in-hospital death, hospitalization, and ICU use at end-of-life, regardless of multimorbidity.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-21T10:08:54Z
      DOI: 10.1177/1049909120968527
  • Evaluation of an Online Home Caregiver Support Program for
           Non-Professional Caregivers of Patients With Palliative Care Needs
    • Authors: Robert M. Boyko, Sukhmani Sodhi, Dakoda J. Herman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Caring for loved ones with palliative needs can be very stressful for carers’. To address this growing issue, an online Home Caregiver Support Program course was created to provide information to non-professional home caregivers about end-of-life care.Objectives:To measure non-professional caregivers’ perceived level of competence in addressing physical, psychological, social, and spiritual needs before and after completing online training modules.Methods:Learners rated their competence before and after completing online modules addressing 4 key dimensions relevant to palliative caregivers. Self-ratings of competence were assessed through surveys, completed before and after the online modules. Scores from before and after each module were compared to determine if the online course had increased participant competence. The Wilcoxon signed rank test was used to analyze participant responses to the pre- and post-survey questions.Results:A total of 176 participants who completed one or more of the online modules between July 2017-December 2018, 70 (40%) of the participants completed at least one pre- and post-module survey and did not declare themselves as a professional caregiver. Participating in the online Home Caregiver Support Program increased participants’ ratings of perceived competence in all domains (p < .01). This significance was maintained when professional caregivers were added to our analysis.Conclusion:After the completing the modules, participants’ self-ratings of perceived competence increased suggesting that participants completing the online program had improved knowledge in addressing the physical, psychological, social, and spiritual challenges faced by non-professional caregivers.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-20T09:41:31Z
      DOI: 10.1177/1049909120968257
  • The Effect of 5-Minute Mindfulness of Peace on Suffering and Spiritual
           Well-Being Among Palliative Care Patients: A Randomized Controlled Study
    • Authors: Lim Liang Yik, Look Mei Ling, Lim Min Ai, Ang Bin Ting, David Paul Capelle, Sheriza Izwa Zainuddin, Tan Seng Beng, Loh Ee Chin, Lam Chee Loong
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Mindfulness practices may have a role in reducing suffering and improving spiritual well-being among patients with serious illness. The efficacy, feasibility and acceptability of such interventions warrant further exploration in the palliative care population.Objective:To investigate the effect of a brief mindfulness practice, the 5-minute mindfulness of peace intervention, on suffering and spiritual well-being among palliative care patients.Methods:A randomized controlled study was conducted on adult palliative care patients with moderate to severe levels of suffering. Participants in the intervention arm were guided through a 5-minute mindfulness of peace exercise while participants in the control arm received 5 minutes of active listening. Pre- and post-intervention suffering and spiritual well-being were measured using the Suffering Pictogram and the FACIT-Sp-12 questionnaire, respectively.Results:40 participants completed the study. 5-minute mindfulness of peace significantly reduced suffering (median = -3.00, IQR = 2.00) more than 5 minutes of active listening (median = -1.00, IQR = 1.75), U = 73.50, z = -3.48, p = 0.001, η2 = 0.31. FACIT-Sp-12 score also significantly improved in the intervention arm (median = +5.00, IQR = 2.75) compared with the control arm after 5 minutes (median = +1.00, IQR = 3.00), U = 95.50, z = -2.85, p = 0.004, η2 = 0.21.Conclusions:A brief 5-minute mindfulness of peace exercise is effective in providing immediate relief of suffering and improving spiritual well-being. It is a useful and feasible intervention among patients receiving palliative care for rapidly and momentarily reducing spiritual suffering.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-20T09:37:51Z
      DOI: 10.1177/1049909120965944
  • Comfort Care to the End
    • Authors: Maryam Hazeghazam
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-16T09:44:25Z
      DOI: 10.1177/1049909120963696
  • Caring for Dying Infants: A Systematic Review of Healthcare Providers’
           Perspectives of Neonatal Palliative Care
    • Authors: Susanny J. Beltran, Marie Nicole Hamel
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate’s life. This paper seeks to systematically summarize healthcare providers’ perspectives related to end of life, in order to identify needs and inform future directions.Methods:Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States.Results:Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy).Conclusion:Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-15T09:21:24Z
      DOI: 10.1177/1049909120965949
  • Informal Caregivers’ Administration of Hospice Prescribed Lorazepam to
           Homecare Patients With Anxiety
    • Authors: Fatima Ropri, Carol S. Weisse
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:A growing number of informal caregivers (IFCs) manage hospice patients’ anxiety by administering lorazepam (Ativan), yet little is known about prescribing practices in home care or the extent to which IFCs carry out regimens.Design and Methods:Data on hospice prescribed lorazepam was determined through a retrospective review of medication records from 216 deceased patients. The dose of lorazepam and type of regimen (i.e., scheduled, PRN, combination) as well as frequency with which it was administered by IFCs was calculated upon admission to a residential care home and on patients’ day of death.Results:The majority (63.1%) of patients were prescribed lorazepam on admission to the home, and more (79.5%) were prescribed lorazepam on the day of death. While higher doses of lorazepam were prescribed and administered on the day of death, the percentage of medication consumed was low on admission (17%) and day of death (27%). Nearly all (92.8%) prescribed lorazepam on the day of death were allowed PRN medication. For PRN only regimens, less than a quarter (24.4%) of patients were given lorazepam on admission with less than half (40.4%) given it while dying. Highest lorazepam administration rates (91.2%) occurred on the day of death when lorazepam was prescribed under a combined regimen.Conclusion:The high frequency of PRN regimens reveal that IFCs are frequently tasked with making decisions about if and when to administer lorazepam. Low overall lorazepam administration suggests a closer monitoring of lorazepam use and enhanced support of IFCs may be needed.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-09T09:48:38Z
      DOI: 10.1177/1049909120965955
  • Religious Harm and Finding Forgiveness
    • Authors: Julie M. Stausmire, Marsha Paul
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-09T03:47:21Z
      DOI: 10.1177/1049909120963602
  • A Feasibility Study of a Volunteer Navigation Program in the Palliative
    • Authors: Wendy Duggleby, Barbara Pesut, Grace Warner, Kathya Jovel Ruiz, Cheryl Nekolaichuk, Sunita Ghosh, Lars Hallström, Konrad Fassbender, Jenny Swindle, Jayna Holroyd-Leduc, Deirdre Jackman, Terri Woytkiw
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Older persons with serious illnesses living in rural communities are an underserved population. They often live with heavy symptom burden and poor quality of life with limited access to resources. Nav-CARE (Navigation: Connecting Accessing Resourcing and Engaging) was developed to specially train and mentor volunteer navigators who help connect older persons with serious illness to the resources and information they need.Aims:This mixed methods longitudinal study evaluated Nav-CARE for feasibility, acceptability, ease of use, and satisfaction by older persons and volunteers.Methods:Nine volunteer navigators visited 23 older persons with serious illness every 3 to 4 weeks for 1 year. Data were collected from volunteer navigators, and older person participants at baseline, during the year- long implementation and post implementation.Results:Volunteer navigators and older persons reported Nav-CARE was easy to use, feasible and acceptable. The majority of older persons agreed or strongly agreed that they were satisfied with the navigation services (100%; 8/8), that navigation services were important to them (87%; 7/8), that they would recommend the program to someone else (87%; 7/8), and would participate in the program again (75%; 6/8). Similarly, volunteer navigators reported 100% (9/9) satisfaction with the program, 100% (9/9) would recommend it to others, and 67% (6/8) would participate again.Conclusions:Nav-CARE appears to be a feasible, acceptable, and satisfactory program for older persons with serious illness and volunteer navigators.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-08T10:34:40Z
      DOI: 10.1177/1049909120965945
  • Speechless at the End of Life, Cared for by a Deaf Doctor
    • Authors: Natalie M. Ertz-Archambault
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-08T09:46:52Z
      DOI: 10.1177/1049909120964438
  • Self-Assessment of Competence in Palliative Care of Medical Doctors
           Working in Saudi Arabia
    • Authors: Nuha Mohammed Malibari, Michael Connolly, Abdulaziz S. Aljohani
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The provision of palliative care (PC) for individuals with a life-threatening condition is fundamental to the role of the physician, in order to improve quality of life; however, little research has assessed the competence of the physicians in PC in Saudi Arabia.Aim:To conduct a baseline assessment of self-assessed palliative care competences among medical physicians in Saudi Arabia.Design:A survey-based cross-sectional study was employed using a specifically designed questionnaire.Setting:The participants in the study were selected from 6 specialist medical departments (Family medicine, cardiology, internal medicine, pulmonary medicine, neurology and oncology) in 4 Saudi Arabian Hospitals, based on inclusion criteria.Results:The study was conducted using a validated questionnaire used in Ireland to evaluate the competence skills of physicians for the provision of palliative care. All categories showed internal reliability and normal distribution of the data. However, the score of the knowledge, attitude and practice among the physicians was higher than the expected. The clinical specialty of the physicians demonstrated greater influence on knowledge, attitude and practice related to the palliative care compared to medical education. This highlighted the importance of training in palliative care to the medical doctors working in a range of specialist area.Conclusion:The study provides baseline data on the level of competence of palliative care of physicians in Saudi Arabia. This study can be used as an assessment tool to further evaluate the effectiveness of palliative care in other areas as primary and secondary care settings
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-08T09:35:07Z
      DOI: 10.1177/1049909120963569
  • Palliative Care Consultation Affects How and Where Heart Failure Patients
    • Authors: Richard Pham, Casey McQuade, Alex Somerfeld, Sandra Blakowski, Gavin W. Hickey
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:Determine the role of palliative care on terminal code status and setting of death for those with heart failure.Background:Although palliative care consultation (PCC) has increased for many conditions, PCC has not increased in those with cardiovascular disease. While it has been shown that the majority of those with heart failure die in medical facilities, the impact of PCC on terminal code status and setting of death requires further analysis.Methods:Patients admitted with heart failure between 2014-2015 at an academic VA Healthcare System were reviewed. Primary outcome was terminal code status. Secondary outcomes included setting of death, hospice utilization, and mortality scores. Student t-testing and Chi-square testing were performed where appropriate.Results:334 patients were admitted with heart failure and had a median follow up time of 4.3 years. 196 patients died, with 122 (62%) receiving PCC and 74 (38%) without PCC. Patients were more likely to have terminal code statuses of comfort measures with PCC (OR = 4.6, p = 0.002), and less likely to be full code (OR = 0.09, p < 0.001). 146 patients had documented settings of death and were more likely to receive hospice services with PCC (OR 6.76, p < 0.001). A patient’s chance of dying at home was not increased with PCC (OR 0.49, p = 0.07), but they were more likely to die with inpatient hospice (OR = 17.03; p < 0.001).Conclusion:Heart failure patients who received PCC are more likely to die with more defined care preferences and with hospice services. This does not translate to dying at home.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-05T09:56:47Z
      DOI: 10.1177/1049909120963565
  • Methadone for Cancer Pain in Pediatric End-of-Life Care
    • Authors: Elizabeth A. Hall, Hannah E. Sauer, Catherine Habashy, Doralina L. Anghelescu
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The goal of adequate pain control becomes increasingly salient for children with cancer and their families as the patients approach the end of life. Methadone is one option that is particularly desirable in end-of-life care given its long duration of action and NMDA antagonism that may help in controlling pain refractory to conventional opioids. The purpose of this study was to describe a single institution’s experience with methadone for the treatment of cancer pain in pediatric end-of-life care.Methods:This retrospective, observational, single-center study included all patients during a 9-year period who died in the inpatient setting and were receiving methadone in their last 30 days of life.Results:Twenty patients were identified, 18 (90%) of whom received methadone for nociceptive pain. The median duration of methadone use was 32 days (range 2-323 days). Methadone doses ranged from 0.09 to 7.76 mg/kg per day. There were no instances of discontinuing methadone due to an increased QTc interval. No episodes of torsades de pointes were observed.Conclusion:In patients with pediatric cancer who are nearing the end of life, methadone is a valuable adjunctive therapy to treat nociceptive and neuropathic pain and to prevent opioid-induced hyperalgesia and opioid tolerance. An individualized approach to dosage and route should be considered based on specific clinical circumstances.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-01T09:48:06Z
      DOI: 10.1177/1049909120963641
  • Palliative Paracentesis in the Home Setting: A Case Series
    • Authors: Ken S. Ota, Nicholas Schultz, Nicole A. Segaline
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Management of ascites-related symptoms in home hospice and palliative care patients can be challenging. Ultrasound-guided paracentesis is a standard intervention for this indication, but generally requires transfer to a hospital or outpatient interventional-radiology (IR) setting; thus, such interventions are often not practical or attainable for home hospice and palliative care patients.Objective:To describe a mobile, in-home service that provides home-based palliative paracentesis (HBPP) as an interventional palliative option for patients with distressing symptoms related to ascites.Design:Retrospective case series. Setting/Subjects: Thirty patients with ascites, confirmed by portable bedside ultrasound, who underwent HBPP at their residence.Results:Thirty-three patients were referred for HBPP for symptomatic abdominal distention from March 1, 2019 to March 1, 2020. Thirty (91%) patients had ultrasound-confirmed ascites and received HBPP. All 30, verbalized appreciable symptom relief post-intervention. There were no reported post-procedural complications.Conclusion:Home-based palliative paracentesis is a safe, effective, and convenient intervention for hospice and palliative care patients with symptomatic ascites.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-30T09:38:56Z
      DOI: 10.1177/1049909120963075
  • Palliative Care and Rapid Emergency Screening Tool and the Palliative
           Performance Scale to Predict Survival of Older Adults Admitted to the
           Hospital From the Emergency Department
    • Authors: Jonas R. Te Paske, Sarah DeWitt, Robin Hicks, Shana Semmens, Leigh Vaughan
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The Palliative Care and Rapid Emergency Screening (P-CaRES) tool has been validated to identify patients in the emergency department (ED) with unmet palliative care needs, but no prognostic data have been published. The Palliative Performance Scale (PPS) has been validated to predict survival based on performance status and separately has been shown to predict survival among adults admitted to the hospital from the ED.Objective:To concurrently validate the 6-month prognostic utility of P-CaRES with a replication of prior studies that demonstrated the prognostic utility of the PPS among adults admitted to the hospital from the ED.Design:Prospective cohort study.Setting/Subjects:Adults>55 years admitted to the hospital from the ED at an urban academic hospital in South Carolina.Measurement:Baseline PPS score and P-CaRES status were evaluated within 51 hours of admission. Vital status at 6 months was evaluated by phone or chart review.Results:131 of 145 participants completed the study. Six-month survival was 79.2% of those with a PPS of 60-100 (22/106 died) and 48% of those with a PPS of 10-50 (13/25 died) (p = 0.0004). Six-month survival was 85.2% for P-CaRES negative (13/88 died) and 48.8% for P-CaRES positive (22/43 died) (p < 0.0001). The inferred hazard ratio (HR) for PPS 10-50, as compared to PPS 60-100 was 3.003 (95%CI (1.475, 6.112) p = 0.0024) and the HR for P-CaRES positive, as compared to P-CaRES negative was 4.186 (95%CI (2.052, 8.536) p < 0.0001).Conclusion:The P-CaRES tool and PPS can predict 6-month survival of older adults admitted from the ED.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-29T09:45:29Z
      DOI: 10.1177/1049909120960713
  • Intrapersonal Factors Impact Advance Care Planning Among Cancer Patients
    • Authors: Elizabeth Palmer Kelly, Brent Henderson, Madison Hyer, Timothy M. Pawlik
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Cancer patients infrequently engage in advance care planning processes. Establishing preferences for future medical treatment without advance care planning may not be patient-centered, as it fails to consider important factors that influence these important decisions.Objective:The purpose of this study was to assess the influence of patient intrapersonal factors including race, religion, level of depression, and cancer stage on overall preferences for future medical treatment, including the presence of a (DNR), power of attorney, and advance directive.Design:A retrospective chart review design was used. Patients were included who were diagnosed with cancer at The Ohio State University James Comprehensive Cancer Center from 01/2015 to 08/2019.Results:A total of 3,463 patients were included. Median age was 59 years (IQR: 49, 67) and the majority of the patients was female (88.7%). Compared with no religious preference, patients who identified as religious had 61% higher odds (95%CI: 1.08-2.40) of having a DNR and approximately 30% higher odds of having a power of attorney (95%CI: 1.08-1.62) or advance directive (95%CI: 1.02-1.64). Patients with clinically relevant depression had more than twice the odds of having a DNR versus patients with no/lower levels of clinical depression (OR: 2.08; 95%CI: 1.40-3.10). White patients had higher odds of having a power of attorney (OR: 1.57; 95%CI: 1.16-2.13) and an advance directive (OR: 3.10; 95% CI: 1.95-4.93) than African-American/Black patients.Conclusions:Understanding the factors that affect preferences for future medical treatment is necessary for medical professionals to provide proper care and support to patients diagnosed with cancer and their families.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-28T09:53:51Z
      DOI: 10.1177/1049909120962457
  • Social Work Training in Palliative Care: Addressing the Gap
    • Authors: Meghan Thiel, Debra Mattison, Elizabeth Goudie, Sara Licata, Josh Brewster, Marcos Montagnini
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      As people live longer with chronic disease and serious illness in the U.S., palliative care teams are called upon to support patients and their families. Social workers are an integral part of the palliative care interprofessional team, and yet there are disproportionately few training programs for social workers who wish to specialize in this area. The curriculum of a post-graduate palliative care training program for social workers should be based on the current standards for palliative care and social work, as described by the National Association of Social Workers (NASW), Council for Social Work Education (CSWE) and the Center to Advance Palliative Care (CAPC). Trainees should develop skills to care for patients who have chronic or life-limiting illness, patients who are nearing their end of life, patients who are in the active dying phase and their families around end of life planning, medical decision making, grief and bereavement. A post-graduate social work training program that aims to prepare social workers to work in the field of palliative care should consist of clinical rotations at multiple sites, robust didactic curriculum and clinical supervision. Interprofessional learning is necessary and training should include opportunities for scholarly work, quality improvement activities, leadership, and teaching. Post-graduate training programs in palliative care will prepare future social workers to be experts in a sub-specialty skill set to meet the needs of people living with chronic disease. These needs and opportunities call on the social work profession to take action to develop post-graduate training programs in palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-24T10:23:42Z
      DOI: 10.1177/1049909120960709
  • Challenges of Dental Hygienists in a Multidisciplinary Team Approach
           During Palliative Care for Patients With Advanced Cancer: A Nationwide
    • Authors: Nobuhisa Nakajima
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Palliative care is constructed by various kinds of professionals. This study aimed to identify the challenges that dental hygienists (DHs) encountered when working with other professionals in a multidisciplinary team approach in palliative care for advanced cancer patients.Methods:We conducted the following two studies: (1) a questionnaire-based survey for DHs who belong to Japanese Society for Oral Care (JSOC) on oral care in palliative care settings (n = 1,290), and (2) surveys on education for DHs in universities. Items in this study included the following: 1) a cross-sectional analysis of the curriculum on palliative care at 10 universities and 2) a questionnaire-based survey on palliative care education at 1 of the 10 universities (n = 75).Results:(1) Seventy-three percent had experience in oral care in palliative care settings. The number of DHs with ≥20 years’ experience was significantly higher than those with
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-24T10:22:41Z
      DOI: 10.1177/1049909120960708
  • Finding the Dignity While Dying—Is It Possible'
    • Authors: Lisa Wardle
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      In the span of five years, my father, brother and mother died. I was close in both emotional and physical proximity to all three. In this role, I witnessed their struggle for dignity at the end of life in whatever manner was left to them. This was made more difficult as they shuffled through the hospital-nursing home-rehabilitation center-home health continuum of care. The patient enters one of those entry points, then seems to ricochet between them. This is an account of how illness and pain erased the life force from my loved ones while I watched helplessly from the sidelines. The emotional toll of seeing their decline was hard to calculate but what of the cost to the one who is dying' And yet each sought to carve some space to imprint their unique spark on their final days even when they had lost the ability to communicate coherently.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-22T09:51:22Z
      DOI: 10.1177/1049909120960451
  • End-of-Life Nutrition Considerations: Attitudes, Beliefs, and Outcomes
    • Authors: Tyler S. Loofs, Kevin Haubrick
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:To assess the physiological outcomes and interpersonal influences that should be considered when making the decision to provide artificial nutrition and hydration (AN&H) for patients in hospice/palliative programs.Methods:A systematic review was conducted using items from the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols 2015 checklist. Distinct search strategies were employed to find primary research articles that addressed: General health outcomes of artificial nutrition and hydration interventions and nutrition therapy interventions (n = 16), nutrition-related symptoms in end-of-life care (n = 8), and the attitudes of patients and providers toward artificial nutrition and hydration (n = 21).Results:The effect of AN&H on health outcomes, quality-of-life measures and nutrition-related symptoms is limited and may vary by patient setting and diagnosis. In the absence of consistent evidence for specific health outcomes, decisions regarding AN&H should be made in context of the desires and beliefs of a patient, their family, and their medical providers. These beliefs may not be consistent with likely outcomes or may be inconsistent between individuals involved in the decision-making process, and individuals of different cultures or geographic regions may approach AN&H decisions from different perspectives. To help navigate the intersection of nutrition-related health outcomes and patient/provider beliefs, palliative care teams may employ a variety of strategies for approaching the decision-making process, and may benefit from specific involvement of a Registered Dietitian to help contribute to or lead these discussions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-18T11:03:35Z
      DOI: 10.1177/1049909120960124
  • Mobile Applications for Advance Care Planning: A Comprehensive Review of
           Features, Quality, Content, and Readability
    • Authors: Meghan McDarby, Danielle Llaneza, Login George, Elissa Kozlov
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Mobile applications that facilitate each stage of the advance care planning process (i.e., obtaining knowledge, contemplating options, and acting on decisions) may be one effective way to support patient-centered care and patient autonomy. The purpose of the current review was to identify and evaluate advance care planning mobile applications for patients. Our specific aim was to examine app features, design quality, content, and readability. We searched the Apple iOS and Google Play stores using keywords developed in conjunction with an academic librarian. Two coders with expertise in palliative care applied guidelines from a previous review and used a consensus coding procedure. We also calculated a Flesh Reading Ease score for each app. Nine apps met criteria and could be evaluated. Overall, apps are limited in features and poor in terms of design quality, layout, and functionality. Regarding content, most apps emphasize making decisions or taking action about advance care planning: 6 apps permit users to document a preferred decision maker, and 6 apps offer a mechanism to distribute and share advance care planning documentation. Three apps focus on knowledge about advance care planning, and only 4 support contemplation about advance care planning. Apps range in terms of readability, from very difficult to fairly easy. This review identifies limitations in features, design quality, and content of existing advance care planning mobile apps. We present recommendations based on the results of this review for the development of future advance care planning apps.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-17T08:23:02Z
      DOI: 10.1177/1049909120959057
  • Treatment of Lower Extremity Edema by Controlled Subcutaneous Drainage at
           Home: A Case Report
    • Authors: Miguel Julião, Elisabeth Costa, Patrícia Calaveiras, Sara Daniel, Paulo Faria de Sousa, Rute Dias
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Lower severe edema is a common condition faced by advanced cancer patients with an impact on comfort, quality of life, and care planning. Diuresis and mechanical interventions are the mainstream options for the treatment of edema, but, although effective, may not be indicated for frail, bed-bound, and dependent patients cared for in the community setting.We present a case report of a young female with severe edema to her right lower limb, which accepted controlled subcutaneous fluid drainage at her home. Subcutaneous fluid drainage at home was effective, safe, and feasible and improved the patient’s comfort and well-being.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-17T02:46:18Z
      DOI: 10.1177/1049909120960715
  • Actual Situations and Factors Related to Nursing Activities in Supporting
           the Transition to Homecare Settings for End-Stage Cancer Patients in
           General Wards in Japan
    • Authors: Saori Yoshioka, Harumi Katayama
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      This study aimed to investigate actual situations of nursing activities in supporting the transition to homecare settings for end-stage cancer patients and to determine factors related to executing such nursing activities from the perspectives of communication skills and interprofessional collaboration. A cross-sectional study was conducted with 513 nurses who worked at designated cancer care hospitals in Japan. A total of 318 valid responses were obtained (valid response rate: 62.0%). Scores for nursing activities were higher for the following items: sharing information regarding the transition to homecare settings, intentionally engaging with patients after their medical conditions were explained, providing care for families, and understanding a patient's will about the transition to homecare settings. On the other hand, scores were lower for items that were related to guiding juniors and self-improvement. A multiple regression analysis was performed with nursing activities as the dependent variable. 8 factors related to nursing activities were determined: experience in supporting the transition to homecare settings as a primary nurse, contribution to a team (Team Approach Assessment Scale [TAAS]), years of nursing experience, function of a team (TAAS), regulation of interpersonal relationship (ENDCOREs communication skills scale), experience of participation in homecare nursing education or seminars, verbal communication skills for good communication (End-of-life Care Nurses’ Communication Skills scale), and educational background. Future challenges include developing an educational program based on the results of the present study and promoting educational intervention studies.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-17T02:45:17Z
      DOI: 10.1177/1049909120959787
  • Prevalence of Extrapyramidal Symptoms in Cancer Patients Referred to
           Palliative Care: A Multicenter Observational Study (JORTC PAL12)
    • Authors: Hiroto Ishiki, Jun Hamano, Hiroka Nagaoka, Yoshinobu Matsuda, Akihiro Tokoro, Hiromichi Matsuoka, Hiroaki Izumi, Akihiro Sakashita, Yoshiyuki Kizawa, Shunsuke Oyamada, Takuhiro Yamaguchi, Satoru Iwase
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Neuroleptics are commonly used in palliative care settings. However, adverse events of neuroleptics, known as extrapyramidal symptoms (EPSs), might be overlooked in clinical practice. We conducted this study to explore the prevalence of EPSs in palliative care setting.Methods:This multicenter, prospective, observational study included patients who 1) were referred to either a specialist palliative care team or a palliative care unit, 2) had a diagnosis of cancer, and 3) were ≥20 years of age. We investigated the prevalence of EPSs and medications used. The primary outcome was the overall Drug-Induced Extrapyramidal Symptom Scale (DIEPSS) score.Results:Between November 2015 and October 2016, 149 patients from 5 centers in Japan were enrolled. The median age was 67 years (range: 21–88 years) and the study population included 81 men (54.4%). The cancer types included lung (55 patients, 36.9%), upper gastrointestinal tract (5, 3.3%), hepatobiliary (19, 12.8%); breast (12, 8.1%); head and neck (10, 6.7%), gynecologic (10, 6.7%), genitourinary (10, 6.7%), and others (28, 18.8%). The median Karnofsky performance status was 60 (20–100). Most patients (86.6%) did not experience delirium. Thirty-nine (26.2%) patients received one or more EPS-inducing medications. EPSs occurred in 4 (2.7%) patients with a cutoff score of 5 points for 5 parkinsonism items in DIEPSS.Conclusion:A lower frequency (
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-17T02:43:57Z
      DOI: 10.1177/1049909120960441
  • Hospital Readmissions in Hospice Patients: Evaluation of
           Medication-Related Causes for Readmission
    • Authors: Joanna DeAngelis, Maria Felton Lowry
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Hospital readmissions, frequent medication changes, and polypharmacy are common issues for hospice patients. It is important to consider if close monitoring of medications by pharmacists could help these patients avoid hospital readmissions.Objective:The objectives of this study were to determine the incidence and types of medication-related problems that contributed to hospital readmissions from hospice settings.Methods:A retrospective chart review was conducted from October 1, 2018 to January 31, 2020. Patients admitted from hospice settings (i.e. Home, ALF, LTCF) and who were seen by the palliative care teams at 9 Maryland and Washington DC MedStar hospitals were included. Demographic information was collected: age, gender, race, primary hospice diagnosis, prognosis determined by provider prior to hospice disposition, reason for readmission, and medication list at readmission. The primary outcomes were the incidence and types of medication-related problems. Secondary outcomes included patient characteristics associated with readmission, and classes/number of medications changed before readmission. Descriptive statistics were used to analyze data.Results:Seventy-five hospice patients were readmitted and seen by palliative care during the study period. Forty-three patients (57%) were found to have medication-related problems at readmission. The most common problem identified was needing additional drug therapy. Dose too low, dose too high, incorrect drugs, adverse drug reactions, and non-adherence were also identified. Additional reasons for readmission were: unanticipated new medical issue (n = 46, 61%) and uncontrolled symptoms (n = 34, 34%).Conclusions:These findings suggest that deprescribing practices possibly contributeto readmissions from hospice settings.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-16T10:18:36Z
      DOI: 10.1177/1049909120959641
  • Modified Glasgow Prognostic Score (mGPS) for Prognostication of Adult
           Oncology Patients With Palliative Intent in a Regional Victorian Hospital,
    • Authors: Nuttaradee Lojanapiwat, Md Rafiqul Islam, Martin Ridout, Sivakumar Subramaniam
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Accurate prognostication is essential in caring for palliative patients. Various prognostication tools have been validated in many settings in the past few years. Biomarkers of inflammation (albumin and C-reactive protein) are combined to calculate the modified Glasgow prognostic score (mGPS), which has been found to be a simple prognostic tool in this population.Objective:This retrospective cohort study was to evaluate mGPS as a prognostication tool for cancer patients admitted to an acute hospital in regional Australia.Methods:Adult cancer patients admitted to an acute Australian regional hospital during 2017 who had albumin and C-reactive protein (CRP) tested were included. The mGPS was calculated based on their admission values and discharge values. Based on their score (0-2), groups were compared using univariate and multivariate Cox regression analysis for prognostication. Kaplan-Meier survival plots and median survival time from admission and discharge were constructed.Results:A total of 170 patient records were reviewed of which 95 had admission and discharge mGPS scores available for analysis. Of those, 86 had died at the time of data analysis. The median survival for admission mGPS 0, 1, 2 was 168,156 and 74 days. For discharge mGPS 0, 1, 2 medians were 168,119 and 70 days. On multi variate analysis admission mGPS 2 showed Hazard ratio of 2.29 (95% CI 1.16-4.56, p -0.02) and discharge mGPS 2 of 2.07 (95% CI 0.95-4.50, p value 0.07).Conclusions:In this study, mGPS was able to differentiate cancer patients into various prognostic groups. Further studies in regional acute hospitals could validate this prospectively with a multi-center larger sample size.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-11T02:24:58Z
      DOI: 10.1177/1049909120958389
  • Impact of the Physician Orders for Life-Sustaining Treatment (POLST)
           Program Maturity Status on the Nursing Home Resident’s Place of Death
    • Authors: Aluem Tark, Mansi Agarwal, Andrew W. Dick, Jiyoun Song, Patricia W. Stone
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The Physician Orders for Life-Sustaining Treatment (POLST) program was developed to enhance quality of care delivered at End-of-Life (EoL). Although positive impacts of the POLST program have been identified, the association between a program maturity status and nursing home resident’s likelihood of dying in their current care settings remain unanswered. This study aims to evaluate the impact of the POLST program maturity status on nursing home residents’ place of death. Using multiple national-level datasets, we examined total 595,152 residents and their place of death. The result showed that the long-stay residents living in states where the program was mature status had 12% increased odds of dying in nursing homes compared that of non-conforming status. Individuals residing in states with developing program status showed 11% increase in odds of dying in nursing homes. The findings demonstrate that a well-structured and well-disseminated POLST program, combined with a continued effort to meet high standards of quality EoL care, can bring out positive health outcomes for elderly patients residing in care settings.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-03T08:12:21Z
      DOI: 10.1177/1049909120956650
  • The Need for Informed Consent for Denial of Artificial Hydration in
           Hospice and Palliative Medicine
    • Authors: Nancy Weisman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-08-27T09:49:28Z
      DOI: 10.1177/1049909120951081
  • Attitudes and Perceptions of End-of-Life Dreams and Visions and Their
           Implication to the Bereaved Family Caregiver Experience
    • Authors: Pei C. Grant, Kathryn Levy, Tahleen A. Lattimer, Rachel M. Depner, Christopher W. Kerr
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:While the majority of research assesses the impact of end-of-life dreams and visions (ELDVs) on patients, more recent research has begun to explore their impact on family caregivers (FCG).Objective:This study evaluates the relationship between general attitudes about dreams, perspectives of ELDV and their role the bereaved FCG experience.Design:Mixed-methods using a cross-sectional survey and five focus groups.Settings/Subjects:A total of 500 FCGs of patients who died under hospice care were recruited for the survey. Focus group members were self-selected through identified interest from the survey.Measurements:In addition to demographics and ELDV prevalence, general attitude toward dreams, ELDV perspectives, and impact on grief were assessed using ad hoc surveys.Results:Participants reporting ELDVs were significantly more validating of everyday dreams (p < .001). Positive attitudes toward dreams strongly correlated with comfort from ELDVs for both patients and FCGs. Openness correlated positively with comfort from the ELDV for both the patient (r = .149, p = .038) and FCG (r = .217, p = 0.002) and negatively with fear/anxiety (r = −.141, p = 0.050). Negative ELDV perceptions (ex. ELDVs were caused by medications) affected grief in areas such as accepting the loss (r = −.235, p = .010) or maintaining connection (r = −.255, p = .010) with the deceased. Focus group discussions were thematically analyzed resulting in 4 themes: ELDV narrative, Connection, Reflection, and Other Experiences.Conclusions:Positive general attitudes toward dreams and positive ELDV perceptions are correlated with better bereavement outcomes. Therefore, patient and family education on ELDVs that focuses on awareness and understanding of ELDVs may enhance clinical outcomes for both family and patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-08-25T11:01:55Z
      DOI: 10.1177/1049909120952318
  • Characterizing Pastoral Care Utilization by Cancer Patients
    • Authors: J. Madison Hyer, Anghela Z. Paredes, Elizabeth Palmer Kelley, Diamantis Tsilimigras, Bonnie Meyer, Hanci Newberry, Timothy M. Pawlik
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:To assess the rate of and characterize the utilization of pastoral care (PC) among patients on their cancer treatment trajectory.Methods:Patients included in the present study were diagnosed with cancer 01/2015-08/2019 at The Ohio State Wexner Medical Center—The James. To determine which patient demographic and clinical factors were independently associated with PC utilization, a multivariable logistic regression was performed.Results:A total of 14,322 patients were included in the study and 5,166 (36.1%) had at least one visit with PC. Cancers such as brain (n = 232, 4.5% vs. n = 159, 1.7%), liver/pancreas (n = 733, 14.2% vs. 686, 7.5%), and lung (n = 1,288 vs. 24.9% vs. n = 1,113, 12.2%) were more commonly noted among patients who utilized PC services (all p < 0.001). Furthermore, compared with patients diagnosed with Stage 1 cancer, patients with more advanced disease stages had higher odds of utilizing PC services (Stage III: OR 2.37, 95% CI 2.07-2.70; Stage IV OR 2.31, 95% CI: 2.04-2.61; both p < 0.05). Interestingly, patients who had a DNR order had a markedly higher odds (OR 4.18, 95%CI 3.76-4.65, p < 0.001) of utilizing PC services.Discussion:One in three patients with cancer utilized PC services. Patients with more severe prognoses and individuals with a DNR order were more likely to utilize PC. The data suggest that PC services are an important resource for many patients and should be integrated into the treatment approach for cancer.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-08-17T11:14:15Z
      DOI: 10.1177/1049909120951082
  • Palliative Performance Scale’s Utility in the Non-Cancer Group, a
           Role as Yet Undefined
    • Authors: Wen Yang Goh, Allyn Y. M. Hum
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-08-12T10:54:00Z
      DOI: 10.1177/1049909120951079
  • Corrigendum to Outcomes of Airway Stents in the Palliative Care of
           Patients With Cancer
    • Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-06-24T10:37:52Z
      DOI: 10.1177/1049909120936412
  • CORRIGENDUM to Courvoisier’s Law (updated to Cheyne-Stokes
    • Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-05-28T11:38:17Z
      DOI: 10.1177/1049909120931994
  • The Premise and Development of CHECK IN—Check-In for Exchange of
           Clinical and Key Information to Enhance Palliative Care Discussions for
           Patients With Limited English Proficiency
    • Authors: Amelia Barwise, Mei-Ean Yeow, Daniel K. Partain
      First page: 533
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Communication regarding serious illness is challenging in most circumstances. Patients with Limited English Proficiency (LEP) have unique language and cultural needs that often require collaboration with a trained medical interpreter, especially when the clinical encounter involves serious illness decision making or elucidation of patient goals, preferences, and values. Although there is mounting evidence to support interpreter/clinician huddles before a serious illness communication encounter, no current initiatives exist to operationalize this evidence. We are currently in the process of developing, evaluating, and implementing a formal interpreter/clinician huddle process to promote high quality care for patients with LEP. Our huddle guide, called the Check-In for Exchange of Clinical and Key Information (CHECK-IN), is designed to facilitate collaboration between an interpreter and clinician during a serious illness encounter by prompting exchange of relevant sociocultural and clinical information between clinicians and interpreters.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-09T10:01:51Z
      DOI: 10.1177/1049909120979982
  • Racial Disparities in Utilization of Palliative Care Among Patients
           Admitted With Advanced Solid Organ Malignancies
    • Authors: Kimberley Lee, Faiz Gani, Joseph K. Canner, Fabian M. Johnston
      First page: 539
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There is increasing recognition of the importance of early incorporation of palliative care services in the care of patients with advanced cancers. Hospice-based palliative care remains underutilized for black patients with cancer, and there is limited literature on racial disparities in use of non-hospice-based palliative care services for patients with cancer.Objective:The primary objective of this study is to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States.Design:This retrospective cohort study analyzed 204 175 hospital admissions of patients with advanced cancers between 2012 and 2014. The cohort was identified through the National Inpatient Dataset. International Classification of Disease, Ninth Revision codes were used to identify receipt of a palliative care consultation.Results:Of this, 57.7% of those who died received IPCC compared to 10.5% who were discharged alive. In multivariable logistic regression models, black patients discharged from the hospital, were significantly less likely to receive a palliative care consult compared to white patients (odds ratio [OR] black: 0.69, 95% CI: 0.62-0.76).Conclusions:Death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There are significant racial disparities in the utilization of IPCC for patients with advanced cancer.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-05-06T09:40:01Z
      DOI: 10.1177/1049909120922779
  • Advance Care Planning for African American Caregivers of Relatives With
           Dementias: Cluster Randomized Controlled Trial
    • Authors: Gloria J. Bonner, Sally Freels, Carol Ferrans, Alana Steffen, Marie L. Suarez, Barbara L. Dancy, Yashika J. Watkins, William Collinge, Alysha S. Hart, Neelum T. Aggarwal, Diana J. Wilkie
      First page: 547
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background and Objectives:African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control.Research Design and Methods:In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed.Results:Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms.Discussion and Implications:Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-04-20T09:43:40Z
      DOI: 10.1177/1049909120916127
  • Perceptions of Palliative Care: Voices From Rural South Dakota
    • Authors: Chamika Hawkins-Taylor, Sarah Mollman, Beth Walstrom, Jennifer Kerkvliet, Mary Minton, Debra Anderson, Charlene Berke
      First page: 557
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:This study aimed to explore health professional, patient, family, and caregiver perceptions of palliative care, availability of palliative care services to patients across South Dakota, and consistency and quality of palliative care delivery.Methods:Six focus groups were conducted over two months. Participants included interprofessional healthcare team members, patients, family members of patients, and caregivers. Individuals with palliative care experiences or interest in palliative care were invited to participate. Recruitment strategies included emails, flyers, and direct contact by members of the Network. Snowball sampling was used to recruit participants.Results:Forty-six participants included patients, family members, caregivers and interprofessional health care team members. Most participants were Caucasian (93.3%) and female (80%). Six primary themes emerged: Need for guidance toward the development of a holistic statewide palliative care model; Poor conceptual understanding and awareness; Insufficient resources to implement complete care in all South Dakota communities; Disparities in the availability and provision of care services in rural SD communities; Need for relationship and connection with palliative care team; and Secondary effects of palliative care on patients/family/caregivers and interprofessional healthcare team members. Significance of Results: Disproportionate access is a principle problem identified for palliative care in rural South Dakota. Palliative care is poorly understood by providers and recipients of care. Service reach is also tempered by lack of resources and payer reimbursement constraints. A model for palliative care in these rural communities requires concerted attention to their unique needs and design of services suited for the rural residents.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-09-01T09:42:18Z
      DOI: 10.1177/1049909120953808
  • Understanding Asian Indian Americans’ Knowledge and Attitudes Toward
           Hospice Care
    • Authors: Nikita Shirsat, Deborah Hoe, Susan Enguidanos
      First page: 566
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans’ knowledge of and attitudes toward hospice care and advance care planning.Procedures:A cross-sectional design was employed using surveys about participants’ knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.Results:Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.Conclusions:This study’s results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-10-27T10:43:51Z
      DOI: 10.1177/1049909120969128
  • Barriers, Facilitators and Recommended Strategies for Implementing a
           Home-Based Palliative Care Intervention in Kolkata, India
    • Authors: Suparna Qanungo, Alejandra Calvo-Schimmel, Shannon McGue, Pooja Singh, Rakesh Roy, Gautam Bhattacharjee, Nibedita Panda, Gaurav Kumar, Rekha Chowdhury, Kathleen B. Cartmell
      First page: 572
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:40 million people in the world are in need of palliative care, but only one-seventh of that population receive services. Underuse of palliative care in low resource countries exacerbates suffering in patients with life limiting illnesses such as cancer.Objectives:The current study was conducted to identify barriers, facilitators and recommended strategies for informing development of a home-based palliative care intervention for poor and medically underserved rural patients in Kolkata, India.Methods:Semi-structured interviews were conducted with 20 clinical and patient stakeholders in Kolkata, India. Questions queried current practices for delivering palliative care, along with barriers, facilitators and optimal strategies for implementing homebased palliative care.Results:We identified some key barriers to palliative care delivery in rural areas: lack of access to palliative care till late stages; patients unaware of their cancer stage; lack of affordability of medication and treatment costs; transportation challenges to access care; strict morphine distribution regulations making it challenging for patients to obtain morphine; cultural factors discouraging patients from seeking palliative care; resistance from medical community to use “rural medical practitioners (RMPs)” to deliver care. We also identified important facilitators, including availability of existing palliative care infrastructure at the cancer center, network of RMPs to serve as CHWs to facilitate palliative care delivery, low morphine cost and family support system for patients.Conclusion:Our findings provide evidence that a palliative care intervention which leverages an existing CHW infrastructure may be a feasible model for expanding the reach of palliative care to rural underserved patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-10T08:52:19Z
      DOI: 10.1177/1049909120969127
  • Predictors of End of Life Discussions Among Minority Older Women Living
           With HIV Infection
    • Authors: Rosina Cianelli, Natalia Villegas, LaToya Lewis-Pierre, Beatriz Valdes, Evelyn Iriarte
      First page: 583
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Among the 39,782 newly HIV diagnosed individuals in the U.S., 17% were aged 50+. Although premature aging, morbidity, and mortality are issues for older people living with HIV that threaten their quality of life, less attention has been focused on end of life (EOL) discussions.Objectives:To examine predictors of EOL discussions with significant others, family members, and friends.Methods:Cross-sectional design was used for this study guided by the The Socio Ecological Model (SEM). Sample: 119 Black and 19 Hispanic women aged 50+ living with HIV.Results:Predictors of EOL discussions were education, living with a partner, religiosity, and pain, which were at the individual-intrapersonal level of the SEM.Discussion:Findings from this study have important implications for health policy makers and clinicians because they cast a bright light on the substantial continued effort that is needed to improve EOL discussions. 
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-11-20T09:27:14Z
      DOI: 10.1177/1049909120971826
  • Lessons on Older LGBTQ Individuals’ Sexuality and Spirituality for
           Hospice and Palliative Care
    • Authors: Tyler Mark Fair
      First page: 590
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Hospice and palliative care are in the beginning stages of providing inclusive care to older lesbian, gay, bisexual, transgender, queer (LGBTQ) patients. This inclusivity is exceedingly more pressing given the growing population of out and aging LGBTQ individuals. Hospice and palliative literature recognizes that spirituality and religion can be fraught topics for LGBTQ patients. A few resources are available to help providers give more inclusive care. Few in hospice and palliative care, however, explicitly outline the direct connection for LGBTQ elders between their sexuality and their spiritual lives. 16 LGBTQ individuals born before 1964 were interviewed in the Colorado Front Range. Keeping with the tradition of critical theory, participants were asked “is there a connection for you between your sexuality and your spirituality' if so, what'” The interviews were analyzed using a qualitative conceptual content analysis method. All 16 participants responded that there was a connection for them. The participants expanded on this connection using five themes in their answers: the sexual act itself is spiritual; their authentic LGBTQ journey as spiritual; love/attraction is spiritual; spirituality and sexuality are inseparable; and finally, noting the ineffability of the sexuality-spirituality connection.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-03T09:15:20Z
      DOI: 10.1177/1049909120978742
  • Palliative Care for the Asian American Adult Population: A Scoping Review
    • Authors: In Seo La, Mei Ching Lee, Katherine A. Hinderer, Iris Chi, Ruotong Liu, Mandong Liu, Yunting Fu
      First page: 658
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications.Methods:A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O’Malley’s methodological framework was followed for scoping reviews.Results:Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs.Conclusion:A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-06-03T09:46:39Z
      DOI: 10.1177/1049909120928063
  • A Review and Considerations on Palliative Care Improvements for African
           Americans With Cancer
    • Authors: Kimberley T. Lee, Marshalee George, Sarah Lowry, Kimlin T. Ashing
      First page: 671
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Hospice and Palliative care benefits are infrequently realized by African American patients with cancer. With the increasing recognition of the critical role of early utilization of palliative services for optimal and quality patient care, it is important to acknowledge disparities and barriers to access that minority patients may face. The purpose of this paper is to discuss the status of palliative care delivery for African American patients within the structure and framework of the clinical practice guideline domains established by the National Consensus Project for Palliative Care. This perspectives paper describes the different aspects of palliative care and the interplay with African American culture. Here, we also attempt to identify the multilevel barriers (health care system and provider level) to palliative care among African Americans as a required step toward decreasing the disparities in access, coverage, utilization, and benefit of palliative care. Furthermore, this paper may serve as an educational guide for health care workers who care for African American patients with cancer.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-06-03T10:35:15Z
      DOI: 10.1177/1049909120930205
  • Integrating Culturally Competent Advance Care Planning for Korean
           Immigrants: An Integrative Review
    • Authors: Sojung Suk, Sharon L. Kozachik, Valerie T. Cotter
      First page: 678
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Aims:This review aims to explore the extant literature on the current utilization of ACP in Kisin order to obtain a comprehensive understanding of their health disparities and to determineevidence-based best practices to integrate culturally-competent ACP for EOL care of KIs.Design:A systematic integrative review of the literature Data Sources:  Four electronic databases including PubMed, the Cumulative Index of Nursing and Allied Health Literature, the Cochrane Library, and Embase.Method:The detailed search strategy for databases implicated a combination of MeSHkeywords and associated terms, which can be found in Table A.Results: Three themes emerged in relation to fundamental components in the integration of culturally-competent ACP for EOL of KIs: (1) cultural characteristics of KIs; (2) disparities in ethnic-oriented ACP and EOL care resources in KIs; and (3) KIs’ perspectives on ACP.Conclusion:The findings of this review indicate that culturally-competent ACP resources for KIsare presently quite insufficient. It is determined that much future research is needed on howculturally-competent ACP can best augment the quality of EOL care for KIs, and on howspecific interventions can effectively implement ACP in community settings. Impact: Such ongoing research dedicated to the development of feasible culturally competent practice guidelines is anticipated to markedly reduce health disparities and promote ACP in KIs. The recommendations in this review may support Korean primary HCPs, Korean health care center administrators, Korean health maintenance organizations (HMOs), Korean advance care nurse practitioners in hospice and palliative care, and nurse researchers in their work.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-06-19T08:28:15Z
      DOI: 10.1177/1049909120933856
  • Disparities in Palliative and Hospice Care and Completion of Advance Care
           Planning and Directives Among Non-Hispanic Blacks: A Scoping Reviews of
           Recent Literature
    • Authors: Mohsen Bazargan, Shahrzad Bazargan-Hejazi
      First page: 688
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks.Methods:The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks.Discussion:Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-08T09:12:46Z
      DOI: 10.1177/1049909120966585
  • Advance Care Planning and End of Life Care Literacy Initiatives in African
           American Faith Communities: A Systematic Integrative Review
    • Authors: Lauren Catlett, Cathy Campbell
      First page: 719
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      African Americans (AA) experience health inequalities that affect their utilization of advance care planning (ACP) and hospice and palliative care at end of life (EOL). Faith-based health promotion models may be applicable to ACP and EOL care literacy for this population. The purpose of this integrative review was to examine the literature highlighting participant responses to ACP and EOL care literacy initiatives in AA faith communities. An integrative literature review was conducted using the following databases: PubMed, CINAHL, Web of Science, and PsychINFO. Eight primary sources met inclusion criteria. Findings from these studies indicate that integration of AA religious beliefs and practices into ACP and EOL care educational programs may enhance the efficacy of these efforts in promoting ACP, advance directive completion, and hospice use. Building trust, creating community partnerships, and involving church leadership in ACP and EOL care literacy promotion efforts serve as important elements to inform future initiatives.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2020-12-10T09:36:19Z
      DOI: 10.1177/1049909120979164
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