Publisher: Sage Publications   (Total: 1166 journals)

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Showing 1 - 200 of 1166 Journals sorted alphabetically
AADE in Practice     Hybrid Journal   (Followers: 6)
Abstracts in Anthropology     Full-text available via subscription   (Followers: 29)
Academic Pathology     Open Access   (Followers: 6)
Accounting History     Hybrid Journal   (Followers: 18, SJR: 0.527, CiteScore: 1)
Acta Radiologica     Hybrid Journal   (Followers: 1, SJR: 0.754, CiteScore: 2)
Acta Radiologica Open     Open Access   (Followers: 2)
Acta Sociologica     Hybrid Journal   (Followers: 39, SJR: 0.939, CiteScore: 2)
Action Research     Hybrid Journal   (Followers: 53, SJR: 0.308, CiteScore: 1)
Active Learning in Higher Education     Hybrid Journal   (Followers: 396, SJR: 1.397, CiteScore: 2)
Adaptive Behavior     Hybrid Journal   (Followers: 9, SJR: 0.288, CiteScore: 1)
Administration & Society     Hybrid Journal   (Followers: 18, SJR: 0.675, CiteScore: 1)
Adoption & Fostering     Hybrid Journal   (Followers: 25, SJR: 0.313, CiteScore: 0)
Adsorption Science & Technology     Open Access   (Followers: 9, SJR: 0.258, CiteScore: 1)
Adult Education Quarterly     Hybrid Journal   (Followers: 258, SJR: 0.566, CiteScore: 2)
Adult Learning     Hybrid Journal   (Followers: 51)
Advances in Dental Research     Hybrid Journal   (Followers: 11, SJR: 1.791, CiteScore: 4)
Advances in Developing Human Resources     Hybrid Journal   (Followers: 35, SJR: 0.614, CiteScore: 2)
Advances in Mechanical Engineering     Open Access   (Followers: 156, SJR: 0.272, CiteScore: 1)
Advances in Methods and Practices in Psychological Science     Full-text available via subscription   (Followers: 20)
Advances in Structural Engineering     Full-text available via subscription   (Followers: 51, SJR: 0.599, CiteScore: 1)
AERA Open     Open Access   (Followers: 14)
Affilia     Hybrid Journal   (Followers: 6, SJR: 0.496, CiteScore: 1)
Africa Spectrum     Open Access   (Followers: 17)
Agrarian South : J. of Political Economy     Hybrid Journal   (Followers: 3)
Air, Soil & Water Research     Open Access   (Followers: 13, SJR: 0.214, CiteScore: 1)
Alexandria : The J. of National and Intl. Library and Information Issues     Full-text available via subscription   (Followers: 68)
Allergy & Rhinology     Open Access   (Followers: 5)
AlterNative : An Intl. J. of Indigenous Peoples     Full-text available via subscription   (Followers: 39, SJR: 0.194, CiteScore: 0)
Alternative Law J.     Hybrid Journal   (Followers: 12, SJR: 0.176, CiteScore: 0)
Alternatives : Global, Local, Political     Hybrid Journal   (Followers: 12, SJR: 0.351, CiteScore: 1)
Alternatives to Laboratory Animals     Full-text available via subscription   (Followers: 11, SJR: 0.297, CiteScore: 1)
American Behavioral Scientist     Hybrid Journal   (Followers: 26, SJR: 0.982, CiteScore: 2)
American Economist     Hybrid Journal   (Followers: 7)
American Educational Research J.     Hybrid Journal   (Followers: 259, SJR: 2.913, CiteScore: 3)
American J. of Alzheimer's Disease and Other Dementias     Hybrid Journal   (Followers: 23, SJR: 0.67, CiteScore: 2)
American J. of Cosmetic Surgery     Hybrid Journal   (Followers: 9)
American J. of Evaluation     Hybrid Journal   (Followers: 18, SJR: 0.646, CiteScore: 2)
American J. of Health Promotion     Hybrid Journal   (Followers: 35, SJR: 0.807, CiteScore: 1)
American J. of Hospice and Palliative Medicine     Hybrid Journal   (Followers: 47, SJR: 0.65, CiteScore: 1)
American J. of Law & Medicine     Full-text available via subscription   (Followers: 12, SJR: 0.204, CiteScore: 1)
American J. of Lifestyle Medicine     Hybrid Journal   (Followers: 7, SJR: 0.431, CiteScore: 1)
American J. of Medical Quality     Hybrid Journal   (Followers: 13, SJR: 0.777, CiteScore: 1)
American J. of Men's Health     Open Access   (Followers: 9, SJR: 0.595, CiteScore: 2)
American J. of Rhinology and Allergy     Hybrid Journal   (Followers: 11, SJR: 0.972, CiteScore: 2)
American J. of Sports Medicine     Hybrid Journal   (Followers: 249, SJR: 3.949, CiteScore: 6)
American Politics Research     Hybrid Journal   (Followers: 36, SJR: 1.313, CiteScore: 1)
American Review of Public Administration     Hybrid Journal   (Followers: 28, SJR: 2.062, CiteScore: 2)
American Sociological Review     Hybrid Journal   (Followers: 356, SJR: 6.333, CiteScore: 6)
American String Teacher     Full-text available via subscription   (Followers: 3)
Analytical Chemistry Insights     Open Access   (Followers: 26, SJR: 0.224, CiteScore: 1)
Angiology     Hybrid Journal   (Followers: 5, SJR: 0.849, CiteScore: 2)
Animation     Hybrid Journal   (Followers: 15, SJR: 0.197, CiteScore: 0)
Annals of Clinical Biochemistry     Hybrid Journal   (Followers: 10, SJR: 0.634, CiteScore: 1)
Annals of Otology, Rhinology & Laryngology     Hybrid Journal   (Followers: 20, SJR: 0.807, CiteScore: 1)
Annals of Pharmacotherapy     Hybrid Journal   (Followers: 59, SJR: 1.096, CiteScore: 2)
Annals of the American Academy of Political and Social Science     Hybrid Journal   (Followers: 51, SJR: 1.225, CiteScore: 3)
Annals of the ICRP     Hybrid Journal   (Followers: 4, SJR: 0.548, CiteScore: 1)
Anthropocene Review     Hybrid Journal   (Followers: 8, SJR: 3.341, CiteScore: 7)
Anthropological Theory     Hybrid Journal   (Followers: 48, SJR: 0.739, CiteScore: 1)
Antitrust Bulletin     Hybrid Journal   (Followers: 14)
Antiviral Chemistry and Chemotherapy     Open Access   (Followers: 2, SJR: 0.635, CiteScore: 2)
Antyajaa : Indian J. of Women and Social Change     Hybrid Journal   (Followers: 1)
Applied Biosafety     Hybrid Journal   (Followers: 1, SJR: 0.131, CiteScore: 0)
Applied Psychological Measurement     Hybrid Journal   (Followers: 21, SJR: 1.17, CiteScore: 1)
Applied Spectroscopy     Full-text available via subscription   (Followers: 27, SJR: 0.489, CiteScore: 2)
Armed Forces & Society     Hybrid Journal   (Followers: 25, SJR: 0.29, CiteScore: 1)
Arthaniti : J. of Economic Theory and Practice     Full-text available via subscription  
Arts and Humanities in Higher Education     Hybrid Journal   (Followers: 49, SJR: 0.305, CiteScore: 1)
Asia Pacific Media Educator     Hybrid Journal   (Followers: 1, SJR: 0.23, CiteScore: 0)
Asia-Pacific J. of Management Research and Innovation     Full-text available via subscription   (Followers: 3)
Asia-Pacific J. of Public Health     Hybrid Journal   (Followers: 15, SJR: 0.558, CiteScore: 1)
Asia-Pacific J. of Rural Development     Hybrid Journal   (Followers: 2)
Asian and Pacific Migration J.     Full-text available via subscription   (Followers: 8, SJR: 0.324, CiteScore: 1)
Asian Cardiovascular and Thoracic Annals     Hybrid Journal   (Followers: 2, SJR: 0.305, CiteScore: 0)
Asian J. of Comparative Politics     Hybrid Journal   (Followers: 5)
Asian J. of Legal Education     Full-text available via subscription   (Followers: 4)
Asian J. of Management Cases     Hybrid Journal   (Followers: 6, SJR: 0.101, CiteScore: 0)
ASN Neuro     Open Access   (Followers: 2, SJR: 1.534, CiteScore: 3)
Assessment     Hybrid Journal   (Followers: 19, SJR: 1.519, CiteScore: 3)
Assessment for Effective Intervention     Hybrid Journal   (Followers: 15, SJR: 0.578, CiteScore: 1)
Australasian J. of Early Childhood     Hybrid Journal   (Followers: 7, SJR: 0.535, CiteScore: 1)
Australasian Psychiatry     Hybrid Journal   (Followers: 18, SJR: 0.433, CiteScore: 1)
Australian & New Zealand J. of Psychiatry     Hybrid Journal   (Followers: 30, SJR: 1.801, CiteScore: 2)
Australian and New Zealand J. of Criminology     Hybrid Journal   (Followers: 546, SJR: 0.612, CiteScore: 1)
Australian J. of Career Development     Hybrid Journal   (Followers: 5)
Australian J. of Education     Hybrid Journal   (Followers: 51, SJR: 0.403, CiteScore: 1)
Australian J. of Management     Hybrid Journal   (Followers: 13, SJR: 0.497, CiteScore: 1)
Autism     Hybrid Journal   (Followers: 355, SJR: 1.739, CiteScore: 4)
Autism & Developmental Language Impairments     Open Access   (Followers: 16)
Avian Biology Research     Hybrid Journal   (Followers: 6, SJR: 0.401, CiteScore: 1)
Behavior Modification     Hybrid Journal   (Followers: 14, SJR: 0.877, CiteScore: 2)
Behavioral and Cognitive Neuroscience Reviews     Hybrid Journal   (Followers: 27)
Behavioral Disorders     Hybrid Journal   (Followers: 1)
Beyond Behavior     Hybrid Journal   (Followers: 1)
Bible Translator     Hybrid Journal   (Followers: 13)
Biblical Theology Bulletin     Hybrid Journal   (Followers: 24, SJR: 0.184, CiteScore: 0)
Big Data & Society     Open Access   (Followers: 55)
Biochemistry Insights     Open Access   (Followers: 7)
Bioinformatics and Biology Insights     Open Access   (Followers: 12, SJR: 1.141, CiteScore: 2)
Biological Research for Nursing     Hybrid Journal   (Followers: 7, SJR: 0.685, CiteScore: 2)
Biomarker Insights     Open Access   (Followers: 1, SJR: 0.81, CiteScore: 2)
Biomarkers in Cancer     Open Access   (Followers: 11)
Biomedical Engineering and Computational Biology     Open Access   (Followers: 13)
Biomedical Informatics Insights     Open Access   (Followers: 8)
Bioscope: South Asian Screen Studies     Hybrid Journal   (Followers: 4, SJR: 0.235, CiteScore: 0)
BMS: Bulletin of Sociological Methodology/Bulletin de Méthodologie Sociologique     Hybrid Journal   (Followers: 4, SJR: 0.226, CiteScore: 0)
Body & Society     Hybrid Journal   (Followers: 29, SJR: 1.531, CiteScore: 3)
Bone and Tissue Regeneration Insights     Open Access   (Followers: 2)
Brain and Neuroscience Advances     Open Access  
Brain Science Advances     Open Access  
Breast Cancer : Basic and Clinical Research     Open Access   (Followers: 12, SJR: 0.823, CiteScore: 2)
British J. of Music Therapy     Hybrid Journal   (Followers: 9)
British J. of Occupational Therapy     Hybrid Journal   (Followers: 252, SJR: 0.323, CiteScore: 1)
British J. of Pain     Hybrid Journal   (Followers: 31, SJR: 0.579, CiteScore: 2)
British J. of Politics and Intl. Relations     Hybrid Journal   (Followers: 39, SJR: 0.91, CiteScore: 2)
British J. of Visual Impairment     Hybrid Journal   (Followers: 14, SJR: 0.337, CiteScore: 1)
British J.ism Review     Hybrid Journal   (Followers: 18)
BRQ Business Review Quarterly     Open Access   (Followers: 1)
Building Acoustics     Hybrid Journal   (Followers: 4, SJR: 0.215, CiteScore: 1)
Building Services Engineering Research & Technology     Hybrid Journal   (Followers: 3, SJR: 0.583, CiteScore: 1)
Bulletin of Science, Technology & Society     Hybrid Journal   (Followers: 9)
Business & Society     Hybrid Journal   (Followers: 15)
Business and Professional Communication Quarterly     Hybrid Journal   (Followers: 9, SJR: 0.348, CiteScore: 1)
Business Information Review     Hybrid Journal   (Followers: 17, SJR: 0.279, CiteScore: 0)
Business Perspectives and Research     Hybrid Journal   (Followers: 3)
Cahiers Élisabéthains     Hybrid Journal   (Followers: 1, SJR: 0.111, CiteScore: 0)
Calcutta Statistical Association Bulletin     Hybrid Journal   (Followers: 1)
California Management Review     Hybrid Journal   (Followers: 37, SJR: 2.209, CiteScore: 4)
Canadian Association of Radiologists J.     Full-text available via subscription   (Followers: 2, SJR: 0.463, CiteScore: 1)
Canadian J. of Kidney Health and Disease     Open Access   (Followers: 8, SJR: 1.007, CiteScore: 2)
Canadian J. of Nursing Research (CJNR)     Hybrid Journal   (Followers: 15)
Canadian J. of Occupational Therapy     Hybrid Journal   (Followers: 166, SJR: 0.626, CiteScore: 1)
Canadian J. of Psychiatry     Hybrid Journal   (Followers: 28, SJR: 1.769, CiteScore: 3)
Canadian J. of School Psychology     Hybrid Journal   (Followers: 12, SJR: 0.266, CiteScore: 1)
Canadian Pharmacists J. / Revue des Pharmaciens du Canada     Hybrid Journal   (Followers: 3, SJR: 0.536, CiteScore: 1)
Cancer Control     Open Access   (Followers: 2)
Cancer Growth and Metastasis     Open Access   (Followers: 1)
Cancer Informatics     Open Access   (Followers: 4, SJR: 0.64, CiteScore: 1)
Capital and Class     Hybrid Journal   (Followers: 10, SJR: 0.282, CiteScore: 1)
Cardiac Cath Lab Director     Full-text available via subscription   (Followers: 1)
Cardiovascular and Thoracic Open     Open Access   (Followers: 1)
Career Development and Transition for Exceptional Individuals     Hybrid Journal   (Followers: 10, SJR: 0.44, CiteScore: 1)
Cartilage     Hybrid Journal   (Followers: 6, SJR: 0.889, CiteScore: 3)
Cell Transplantation     Open Access   (Followers: 5, SJR: 1.023, CiteScore: 3)
Cephalalgia     Hybrid Journal   (Followers: 8, SJR: 1.581, CiteScore: 3)
Cephalalgia Reports     Open Access   (Followers: 4)
Child Language Teaching and Therapy     Hybrid Journal   (Followers: 34, SJR: 0.501, CiteScore: 1)
Child Maltreatment     Hybrid Journal   (Followers: 11, SJR: 1.22, CiteScore: 3)
Child Neurology Open     Open Access   (Followers: 6)
Childhood     Hybrid Journal   (Followers: 19, SJR: 0.894, CiteScore: 2)
Childhood Obesity and Nutrition     Open Access   (Followers: 12)
China Information     Hybrid Journal   (Followers: 9, SJR: 0.767, CiteScore: 2)
China Report     Hybrid Journal   (Followers: 11, SJR: 0.221, CiteScore: 0)
Chinese J. of Sociology     Full-text available via subscription   (Followers: 5)
Christian Education J. : Research on Educational Ministry     Hybrid Journal   (Followers: 1)
Chronic Illness     Hybrid Journal   (Followers: 6, SJR: 0.672, CiteScore: 2)
Chronic Respiratory Disease     Hybrid Journal   (Followers: 12, SJR: 0.808, CiteScore: 2)
Chronic Stress     Open Access  
Citizenship, Social and Economics Education     Full-text available via subscription   (Followers: 6, SJR: 0.145, CiteScore: 0)
Cleft Palate-Craniofacial J.     Hybrid Journal   (Followers: 8, SJR: 0.757, CiteScore: 1)
Clin-Alert     Hybrid Journal   (Followers: 1)
Clinical and Applied Thrombosis/Hemostasis     Open Access   (Followers: 32, SJR: 0.49, CiteScore: 1)
Clinical and Translational Neuroscience     Open Access   (Followers: 1)
Clinical Case Studies     Hybrid Journal   (Followers: 3, SJR: 0.364, CiteScore: 1)
Clinical Child Psychology and Psychiatry     Hybrid Journal   (Followers: 45, SJR: 0.73, CiteScore: 2)
Clinical EEG and Neuroscience     Hybrid Journal   (Followers: 8, SJR: 0.552, CiteScore: 2)
Clinical Ethics     Hybrid Journal   (Followers: 13, SJR: 0.296, CiteScore: 1)
Clinical Medicine Insights : Arthritis and Musculoskeletal Disorders     Open Access   (Followers: 3, SJR: 0.537, CiteScore: 2)
Clinical Medicine Insights : Blood Disorders     Open Access   (Followers: 1, SJR: 0.314, CiteScore: 2)
Clinical Medicine Insights : Cardiology     Open Access   (Followers: 8, SJR: 0.686, CiteScore: 2)
Clinical Medicine Insights : Case Reports     Open Access   (Followers: 1, SJR: 0.283, CiteScore: 1)
Clinical Medicine Insights : Circulatory, Respiratory and Pulmonary Medicine     Open Access   (Followers: 4, SJR: 0.425, CiteScore: 2)
Clinical Medicine Insights : Ear, Nose and Throat     Open Access   (Followers: 2)
Clinical Medicine Insights : Endocrinology and Diabetes     Open Access   (Followers: 33, SJR: 0.63, CiteScore: 2)
Clinical Medicine Insights : Oncology     Open Access   (Followers: 3, SJR: 1.129, CiteScore: 3)
Clinical Medicine Insights : Pediatrics     Open Access   (Followers: 3)
Clinical Medicine Insights : Psychiatry     Open Access   (Followers: 10)
Clinical Medicine Insights : Reproductive Health     Open Access   (Followers: 1, SJR: 0.776, CiteScore: 0)
Clinical Medicine Insights : Therapeutics     Open Access   (Followers: 1, SJR: 0.172, CiteScore: 0)
Clinical Medicine Insights : Trauma and Intensive Medicine     Open Access   (Followers: 4)
Clinical Medicine Insights : Urology     Open Access   (Followers: 3)
Clinical Medicine Insights : Women's Health     Open Access   (Followers: 4)
Clinical Nursing Research     Hybrid Journal   (Followers: 34, SJR: 0.471, CiteScore: 1)
Clinical Pathology     Open Access   (Followers: 5)
Clinical Pediatrics     Hybrid Journal   (Followers: 25, SJR: 0.487, CiteScore: 1)
Clinical Psychological Science     Hybrid Journal   (Followers: 16, SJR: 3.281, CiteScore: 5)
Clinical Rehabilitation     Hybrid Journal   (Followers: 78, SJR: 1.322, CiteScore: 3)
Clinical Risk     Hybrid Journal   (Followers: 5, SJR: 0.133, CiteScore: 0)
Clinical Trials     Hybrid Journal   (Followers: 22, SJR: 2.399, CiteScore: 2)
Clothing and Textiles Research J.     Hybrid Journal   (Followers: 28, SJR: 0.36, CiteScore: 1)
Collections : A J. for Museum and Archives Professionals     Full-text available via subscription   (Followers: 3)
Common Law World Review     Full-text available via subscription   (Followers: 17)
Communication & Sport     Hybrid Journal   (Followers: 8, SJR: 0.385, CiteScore: 1)
Communication and the Public     Hybrid Journal   (Followers: 2)
Communication Disorders Quarterly     Hybrid Journal   (Followers: 15, SJR: 0.458, CiteScore: 1)
Communication Research     Hybrid Journal   (Followers: 24, SJR: 2.171, CiteScore: 3)
Community College Review     Hybrid Journal   (Followers: 8, SJR: 1.451, CiteScore: 1)
Comparative Political Studies     Hybrid Journal   (Followers: 291, SJR: 3.772, CiteScore: 3)
Compensation & Benefits Review     Hybrid Journal   (Followers: 8)
Competition & Change     Hybrid Journal   (Followers: 12, SJR: 0.843, CiteScore: 2)

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Similar Journals
Journal Cover
American Journal of Hospice and Palliative Medicine
Journal Prestige (SJR): 0.65
Citation Impact (citeScore): 1
Number of Followers: 47  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1049-9091 - ISSN (Online) 1938-2715
Published by Sage Publications Homepage  [1166 journals]
  • Adaptation and Psychometric Evaluation of the Parenting Concerns
           Questionnaire—Advanced Disease

    • Free pre-print version: Loading...

      Authors: Eliza M. Park, Mian Wang, Savannah M. Bowers, Anna C. Muriel, Paula K. Rauch, Teresa Edwards, Samantha M. Yi, Brittany Daniel, Laura C. Hanson, Mi-Kyung Song
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:When patients with advanced cancer have minor children (age < 18), their health-related quality of life is closely linked to their concerns about the impact of progressive illness and death on their children. The Parenting Concerns Questionnaire (PCQ), a validated measure for parents with cancer, does not capture the full range of concerns in advanced cancer. The aim of this was study was to adapt and establish psychometrics for the PCQ for advanced disease (PCQ-AD).Methods:After generating an initial item-bank, we conducted concept elicitation interviews with clinicians (n = 8) and cognitive interviews with patients (n = 23) for face validity. New items addressed concerns about impact of parental death, making every moment count, communication, and financial impact of cancer on children. We administered 21 candidate items to 151 parents with advanced cancer. We conducted confirmatory factor analysis (CFA), calculated internal consistency, and assessed convergent and known-groups validity.Results:We removed 8 redundant items due to residual covariation between items. CFA of the 13-item PCQ-AD demonstrated satisfactory fit (CFI = 0.971, TLI = 0.966, RMSEA = 0.081) and high internal consistency (Cronbach’s alpha = 0.94, composite reliability = 0.95). The PCQ-AD demonstrated convergent validity and known-groups validity; patients with poor functional status reported higher scores than patients with better functional status (Cohen’s d = 0.56, p = 0.002).Conclusion:Adaptation of the PCQ yielded the addition of constructs important in advanced cancer. The PCQ-AD appears to be a reliable and valid measure of parenting concerns in advanced cancer, but future studies are needed to examine measure performance in diverse populations and responsiveness of the PCQ-AD to interventions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-10-08T03:04:19Z
      DOI: 10.1177/10499091211049801
       
  • Spiritual Motivations to Practice Medicine: A Survey of Cancer Care
           Providers

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      Authors: Elizabeth Palmer Kelly, Brian Myers, Joseph Kelly-Brown, Brittany L. Waterman, Erin Stevens, Timothy M. Pawlik
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There is increased interest in the role of spirituality in the cancer care context, but how it may inspire individuals to pursue a career as a healthcare provider is unknown. We sought to determine the relationship between intrinsic religiosity, religious identity, provider role, and spiritual motivations to practice medicine.Methods:A cross-sectional survey was administered to healthcare providers at a large, Midwest Comprehensive Cancer Center. The relationship between provider type, intrinsic religiosity, religious identity, and spiritual motivations to practice medicine was assessed with binary logistic regression.Results:Among 340 participants, most were female (82.1%) or Caucasian (82.6%) and identified as being religious (57.5%); median age was 35 years (IQR: 31-48). Providers included nurses (64.7%), physicians (17.9%), and “other” (17.4%). Compared with physicians, nurses were less likely to agree that they felt responsible for reducing pain and suffering in the world (OR: 0.12, p = 0.03). Similarly, “other” providers were less likely than physicians to believe that the practice of medicine was a calling (OR: 0.28, p = 0.02). Providers with a high self-reported intrinsic religiosity demonstrated a much greater likelihood to believe that the practice of medicine is a calling (OR:1.75, p = 0.001), as well as believe that personal R&S beliefs influence the practice of medicine (OR:3.57, p < 0.001). Provider religious identity was not associated with spiritual motivations to practice medicine (all p> 0.05).Conclusion:Intrinsic religiosity had the strongest relationship with spiritual motivations to practice medicine. Understanding these motivations may inform interventions to avoid symptoms of provider burnout in cancer care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-10-05T05:48:32Z
      DOI: 10.1177/10499091211049802
       
  • End of Life Neuropsychological Impairments and Psychological Care of
           Persons With Advanced Parkinsonism

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      Authors: George P. Prigatano, Naomi Salins
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Decline in executive functioning, before frank dementia occurs, has been reported in patients with a history of stroke and malignant brain tumors. This may also be true in patients with advanced Parkinson’s disease (PD). In this paper, we summarize the limited research on the motor and cognitive predictors of mortality in advanced PD. We then provide 2 case vignettes of patients with end of life advanced PD who demonstrated a substantial decline in working memory and speech festination. We contrast these patients’ neuropsychological features to a third patient with advanced PD who shows no signs of impending death. Monitoring neuropsychological signs of executive dysfunction, explaining the neuropsychological dysfunctions to the patient and spouse while recognizing the past and retained cognitive competencies of the person is an important component of end of life psychological care. In the context of this type of consultation, the patient may experience an opportunity to communicate their emotional concerns prior to death which further reduces the anxiety associated with death.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-10-05T05:47:18Z
      DOI: 10.1177/10499091211049798
       
  • The Effect of Triggered Palliative Medicine Consults on Nurse Moral
           Distress in the Medical Intensive Care Unit

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      Authors: Gina M. Piscitello, Vivien Joy Lamadrid, Zoë Post, Ramandeep Kaur, Barbara Gulczynski, Ryan Baldeo, Christine Hudoba, Sean O’Mahony, Elaine Chen, Jared Greenberg
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Moral distress in the intensive care unit contributes to negative emotional experiences in nurses and adversely affects patient care. This prospective cohort study evaluates an intervention designed to improve nurse moral distress in the medical intensive care unit and assesses patient outcomes which may improve moral distress.Methods:Nurse moral distress was measured before and after an intervention of triggered palliative consults and scheduled family meetings in the intensive care unit during the COVID-19 pandemic. Patient outcomes in the intervention medical intensive care unit were compared to a control group.Results:Forty-eight nurses (n = 48/78, 62%) completed the pre-intervention survey and 33 (n = 33/78, 42%) completed the post-intervention survey. Nurse moral distress using the MMD-HP scale pre- and post-intervention (122.5 vs. 134.0, P = 0.1210) was not statistically different. Intervention group patients (n = 57/64, 89%) had earlier transition to do not resuscitate status (hazard ratio 2.1, 95% CI 1.1-4.0, P = 0.0294), higher rate of documented alternate decision makers (100% vs. 61%, P < 0.0001), and higher rate discharged to a facility (28% vs. 14%) or hospice (19% vs. 7%) (P = 0.0090). Intervention group patients with a do not resuscitate (DNR) order had lower median length of stay in the intensive care unit (4 days vs. 13 days, P = 0.0004) and hospital (10 days vs. 21 days, P = 0.0005), and lower median total hospital costs per patient ($39,067 vs. $116,476, P = 0.0029) when compared control group patients with a DNR order.Conclusion:Triggered palliative consults with scheduled family meetings were not associated with change in nurse moral distress. More research is needed to uncover methods to improve nurse moral distress in the intensive care unit.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-30T03:53:15Z
      DOI: 10.1177/10499091211049398
       
  • The Role of an Inpatient Hospice and Palliative Clinical Pharmacist in the
           Interdisciplinary Team

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      Authors: Jetavia Jones Moody, Ivy O. Poon, Ursula K. Braun
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Palliative care is a specialized health care service for individuals with serious illness at any stage and can be provided in any setting. Current national consensus developed by palliative care experts recommends the inclusion of pharmacists in an interdisciplinary team (IDT) to provide quality palliative care. However, national registry data report that less than 10% of inpatient palliative teams in the U.S. have a clinical pharmacist. Clinical pharmacists have an impactful role in palliative patients’ quality of life by optimizing symptom management, deprescribing, and providing education to the palliative care team as well as patients and their families. In this report, we review the current literature on the role of a palliative pharmacist in an inpatient palliative care setting and compare and contrast this with our own clinical practice, providing case examples about the role of a palliative clinical pharmacist in an interdisciplinary inpatient palliative care setting. Future strategies are needed to increase post-graduate specialized pharmacy residency training in palliative care as well as education on palliative and hospice care in pharmacy schools to support the role of clinical pharmacists in palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-29T03:20:18Z
      DOI: 10.1177/10499091211049401
       
  • The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

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      Authors: Anish Sethi, Elyse Everett, Ambereen Mehta, Jessica Besbris, Christa Burke, Elizabeth Pedowitz, Molly Kilpatrick, Laura Foster, Sam Maiser
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-29T03:18:04Z
      DOI: 10.1177/10499091211049386
       
  • Corrigendum to the Role of Religiosity in Symptom Expression of Advanced
           Cancer Patients

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      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-27T06:07:27Z
      DOI: 10.1177/10499091211050135
       
  • Social Determinants of Health May Predict End of Life Portable Orders for
           Life Sustaining Treatment Form Completion and Treatment Selections

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      Authors: Ladawna Gievers, Sheevaun Khaki, Abby Dotson, Zunqiu Chen, Robert C. Macauley, Susan Tolle
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:End of life (EOL) care planning is important for aging adults given the growing prevalence of chronic medical conditions in the US. The Portable Orders for Life Sustaining Treatment (POLST) program promotes communication between clinicians and patients with advanced illness about EOL treatment preferences. Despite growing resources for EOL care, utilization remains unequal based on social determinants of health (SDOH), including race, language, urbanization, and education. We evaluated the relationship between POLST form selections and completion rates and SDOH.Methods:Oregon POLST Registry and American Community Survey data from 2013 to 2017 were analyzed retrospectively. POLST form completion rates and selections, and various SDOH, including age, income, insurance status, urbanization, etc. were recorded. Data were merged based on ZIP codes and analyzed using χ2 or Wilcoxon-Mann-Whitney tests. Logistic regression was performed.Results:127,588 POLST forms from 319 ZIP codes were included. POLST form completion rates were highest among urban ZIP codes, and urban registrants more often selected CPR and full treatment. ZIP codes with higher incomes tended to select CPR. ZIP codes with higher rates of private insurance completed POLST forms, and selected CPR and full treatment more frequently. ZIP codes with higher rates of Bachelor’s degrees (or higher) completed POLST forms and selected full treatment more frequently.Conclusions:Various SDOH-specifically, urbanization, insurance status, income level and educational level achieved-may influence POLST form completion rates and selections. The expanding socioeconomic diversity and growth of urban communities, highlight the need for broader access to EOL planning and POLST.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-27T05:59:34Z
      DOI: 10.1177/10499091211041566
       
  • Conversations About Children When an Important Adult Is at End of Life: An
           Audit

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      Authors: Jeffrey R. Hanna, Elizabeth Rapa, Mary Miller, Madeleine Turner, Louise J. Dalton
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals’ perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice.Methods:An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress.Results:Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option.Conclusions:Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-20T03:34:27Z
      DOI: 10.1177/10499091211046241
       
  • Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal
           Professionals in China

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      Authors: Lin Gu, Zhen-Zhen Li, Niang-Huei Peng, Jian-Fu Zhou, Bi-Rong Wei, Yue-Cune Chang
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China.Methods:A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal intensive care units from 2 children’s hospitals and 3 medical centers in China.Measurements:The translated modified version of the Neonatal Palliative Care Attitude Scale was used to survey neonatal clinicians’ attitudes and beliefs regarding neonatal palliative care.Results:Findings highlight 4 facilitators and 5 barriers among participating clinicians. Participants gave contradictory responses regarding the relative importance of curative treatment versus palliative care in the NICU. Negatively traumatic feelings, cultural issues and moral distress may impact this contradictory response and discourage clinicians from providing neonatal palliative care. Additionally, neonatologists and nurses held differing attitudes on several topics (p < 0.05).Conclusion:Further research should address strategies to improve knowledge and attitudes and relieve moral distress in NICU clinicians. Neonatal clinicians providing neonatal palliative care should receive regular palliative care training addressing culture-specific issues and communication skills.Practice Implications:Study findings will be beneficial to inform clinical education and practice. Regular interdisciplinary team training is needed to enhance support for palliative care and decrease clinicians’ moral distress during end-of-life care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-20T03:32:14Z
      DOI: 10.1177/10499091211046236
       
  • Parent’s Lived Experience of Memory Making With Their Child at or
           Near End of Life

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      Authors: Terrie Clarke, Michael Connolly
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died.Aim:This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life.Design:A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted.Setting:A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children’s hospice.Results:Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child’s memory alive and include them in conversation.Conclusions:The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-17T06:20:28Z
      DOI: 10.1177/10499091211047838
       
  • COVID-19, Suffering and Palliative Care: A Review

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      Authors: Tan Seng Beng, Carol Lai Cheng Kim, Chai Chee Shee, Diana Ng Leh Ching, Tan Jiunn Liang, Mehul Kumar Narendra Kumar, Ng Chong Guan, Lim Poh Khuen, Lam Chee Loong, Loh Ee Chin, Sheriza Izwa Zainuddin, David Paul Capelle, Ang Chui Munn, Lim Kah Yen, Nik Nathasha Hani Nik Isahak
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      According to the WHO guideline, palliative care is an integral component of COVID-19 management. The relief of physical symptoms and the provision of psychosocial support should be practiced by all healthcare workers caring for COVID-19 patients. In this review, we aim to provide a simple outline on COVID-19, suffering in COVID-19, and the role of palliative care in COVID-19. We also introduce 3 principles of palliative care that can serve as a guide for all healthcare workers caring for COVID-19 patients, which are (1) good symptom control, (2) open and sensitive communication, and (3) caring for the whole team. The pandemic has brought immense suffering, fear and death to people everywhere. The knowledge, skills and experiences from palliative care could be used to relieve the suffering of COVID-19 patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-16T07:00:54Z
      DOI: 10.1177/10499091211046233
       
  • Integrating Palliative Care Into a Neurosurgical Intensive Care Unit
           (NS-ICU): A Quality Improvement (QI) Project

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      Authors: Choo Hwee Poi, Mervyn Yong Hwang Koh, Tessa Li-Yen Koh, Yu-Lin Wong, Wendy Yu Mei Ong, Chunguang Gu, Fionna Chunru Yow, Hui Ling Tan
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:We conducted a pilot quality improvement (QI) project with the aim of improving accessibility of palliative care to critically ill neurosurgical patients.Methods:The QI project was conducted in the neurosurgical intensive care unit (NS-ICU). Prior to the QI project, referral rates to palliative care were low. The ICU-Palliative Care collaborative comprising of the palliative and intensive care team led the QI project from 2013 to 2015. The interventions included engaging key stake-holders, establishing formal screening and referral criteria, standardizing workflows and having combined meetings with interdisciplinary teams in ICU to discuss patients’ care plans. The Palliative care team would review patients for symptom optimization, attend joint family conferences with the ICU team and support patients and families post-ICU care. We also collected data in the post-QI period from 2016 to 2018 to review the sustainability of the interventions.Results:Interventions from our QI project and the ICU-Palliative Care collaborative resulted in a significant increase in the number of referrals from 9 in 2012 to 44 in 2014 and 47 the year later. The collaboration was beneficial in facilitating transfers out of ICU with more deaths outside ICU on comfort-directed care (96%) than patients not referred (75.7%, p < 0.05). Significantly more patients had a Do-Not-Resuscitation (DNR) order upon transfer out of ICU (89.7%) compared to patients not referred (74.2.%, p < 0.001), and had fewer investigations in the last 48 hours of life (p < 0.001). Per-day ICU cost was decreased for referred patients (p < 0.05).Conclusions:Multi-faceted QI interventions increased referral rates to palliative care. Referred patients had fewer investigations at the end-of-life and per-day ICU costs.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-16T06:59:05Z
      DOI: 10.1177/10499091211045616
       
  • Corrigendum to Quality of Communication Questionnaire for Patients
           Hospitalized in Intensive and Palliative Care Unit: Validity Evidence for
           Use in Brazil

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      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-15T03:43:37Z
      DOI: 10.1177/10499091211047647
       
  • Caring for Patients With Dementia at End of Life

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      Authors: Phyllis B. Whitehead, Shareen Gamaluddin, Sarah DeWitt, Christi Stewart, Kye Y. Kim
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Care of the dementia patient continues to be challenging. It is a terminal condition that many times goes undiagnosed leading to improper evidence-based interventions. Healthcare professionals (HCPs) should initiate goals of care conversations early with patients and their families in order to align treatment preferences. Early integration of palliative medicine is an important intervention that can lead to better manage symptoms and lessen the strain on loved ones. Additionally, early enrollment into hospice should be encouraged with loved ones to promote quality of life as defined by the patient.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-14T10:49:33Z
      DOI: 10.1177/10499091211046247
       
  • Back to the Basics—Is Comfort Care the Same as Do Not Resuscitate'
           How Misinterpreting Code Status May Lead to Potential Patient Harm

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      Authors: David B. Brecher, Shane M. Morris
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Several research studies have shown that code status documentation is misinterpreted or incorrectly defined by a significant number of medical professionals. This misinterpretation among the medical team (i.e. equating Do Not Resuscitate (DNR) with comfort care measures only) may lead to false reporting, poor symptom management, and potentially adverse clinical outcomes. Most Hospice and Palliative Care providers are aware of these distinctions, however a shortage (and continued foreseen shortage) of Hospice and Palliative Care providers may mean these conversations and distinctions will fall to non-subspecialists, or providers of other medical specialties or degrees. The literature has demonstrated that these shortfalls and misinterpretations are present and constitute potential harm to our patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-14T10:47:59Z
      DOI: 10.1177/10499091211046235
       
  • Pharmacologic and Non-Pharmacologic Dyspnea Management in Advanced Cancer
           Patients

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      Authors: Rachel A. Zemel
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      As there is a high propensity for patients with advanced malignancy to experience refractory dyspnea, it is necessary for physicians to be well-versed in the management of these patients’ dyspneic symptoms. For symptomatic treatment of cancer patients with dyspnea, both pharmacologic and non-pharmacologic methods should be considered. The main source of pharmacologic symptom management for dyspnea is oral and parenteral opioids; benzodiazepines and corticosteroids may serve as helpful adjuncts alongside opioid treatments. However, oxygen administration and nebulized loop diuretics have not been shown to clinically benefit dyspneic cancer patients. Applying non-pharmacologic dyspnea management methods may be valuable palliative therapies for advanced cancer patients, as they provide benefit with negligible harm to the patient. Advantageous and minimally harmful non-pharmacologic dyspnea therapies include facial airflow, acupuncture and/or acupressure, breathing exercises, cognitive behavioral therapy, music therapy, and spiritual interventions. Thus, it is vital that physicians are prepared to provide symptomatic care for dyspnea in advanced cancer patients as to minimize suffering in this patient population during definitive cancer treatments or hospice care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-13T08:43:55Z
      DOI: 10.1177/10499091211040436
       
  • Coping Through COVID-19: A Mixed Method Approach to Understand How
           Palliative Care Teams Managed the COVID-19 Pandemic

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      Authors: Kayla D. Finuf, Santiago Lopez, Maria T. Carney
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:While previous work documented a substantial increase in patient mortality consultations and workload for palliative teams, little is known about how these team members managed their mental and physical health during the COVID-19 pandemic. We investigated how job resources (coworker and supervisor support) and personal resources (coping strategies) reduced perceptions of burnout and increased perceptions of well-being.Method:An anonymous electronic survey was sent to all members (N = 64) of the palliative medical team among 14 hospitals of a New York State health system. Data were collected between September 2020 to October 2020. Measures included validated scales for burnout (Oldenburg Burnout Inventory), coping strategies (Cybernetic Coping Scale), subjective well-being (BBC Subjective Well-being scale), and coworker/supervisor support (7 items from Yang et al).Results:Results indicated devaluation coping tactics were used to reduce perceptions of burnout and to increase perceptions of physical health. Higher burnout was identified when using avoidance coping techniques. Furthermore, coworkers and supervisor(s) support significantly reduced disengagement when compared to coworker support alone.Conclusion:COVID-19 exacerbated burnout experienced by palliative care teams, yet the use of coping behaviors (devaluation/avoidance) and external resources (coworker and supervisor support) utilized by these teams were found to have positive effects. Further research should investigate these antagonizing factors to help preventing and addressing burn out during times of crises and in the everyday of palliative care teams.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-09T08:47:11Z
      DOI: 10.1177/10499091211045612
       
  • The Feasibility of Virtual VitalTalk Workshops in Japanese: Can Faculty
           Members in the US Effectively Teach Communication Skills Virtually to
           Learners in Japan'

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      Authors: Kaori Ito, Takeshi Uemura, Misuzu Yuasa, Eriko Onishi, Youkie Shiozawa, Hirono Ishikawa, Kei Ouchi, Shunichi Nakagawa
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:VitalTalk is an established training program for serious illness conversations in the US. Previously, this training course has been provided in-person in Japanese, but never virtually.Objectives:To evaluate the feasibility of a virtually administered VitalTalk workshop in Japanese.Setting/Subjects:We conducted a virtual workshop which consisted of 2 days (3 hours per day) of synchronous sessions and preceding asynchronous modules. Five VitalTalk faculty members in the US facilitated 4 workshops for 48 physicians from 33 institutions across Japan. Learners completed surveys before and after the workshop.Measurements:To evaluate the feasibility, learners were asked for their satisfaction with the workshop and the virtual format as primary outcomes and their self-assessed preparedness in serious illness communication as the secondary outcome. Each question employed a 5-point Likert scale.Results:All learners (n = 48, male 79%) participated in the survey. The mean score of the learners’ satisfaction was 4.69 or higher in all questions. The mean score of the virtual format’s satisfaction was 4.33 or higher in all questions. The mean score of self-reported preparedness on the 11 questions were between 2.30 and 3.34 before the workshop, all of which significantly increased to 3.08 through 3.96 after the workshop (p < 0.01 in all questions).Conclusion:Learners in Japan perceived the virtual format of our VitalTalk workshop as satisfactory, and their self-reported preparedness improved significantly after the workshop. VitalTalk faculty members in the US were able to provide virtual communication training to physicians in Japan.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-08T08:30:29Z
      DOI: 10.1177/10499091211044477
       
  • The Role of Religiosity in Symptom Expression of Advanced Cancer Patients

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      Authors: Sebastiano Mercadante, Claudio Adile, Marianna Ricci, Marco Maltoni, Giuseppe Bonanno, Alessandro Casuccio
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Aim:The aim of this study was to assess the religious pattern and its impact on symptom expression in patients with advanced cancer.Methods:A consecutive sample of advanced cancer patients screened at admission to palliative care. Standard epidemiological data were recorded. Patients were asked about their religious beliefs, the degree of social relationship to existing religions, the role of religion in their life, and the frequency of their prayer. The Edmonton Symptom Assessment Scale (ESAS) and Hospital Anxiety Depression scale (HADS) were assessed.Results:Two-hundred-eighty-three patients were screened. Age and gender were found to be independently correlated with religious belief (p = 0.042 and p = 0.016, respectively). Gender (females, p = 0.026), age (p = 0.003), lower Karnofsky performance status (KPS) (p = 0.022), and higher values of HADS-A (p = 0.003) were independently correlated with the degree of social relationship to existing religions. Gender (females, p = 0.002), lower KPS (p = 0.005), and higher values of HADS-A (p = 0.04) were independently correlated with a more relevant role of religiosity. Gender (females, p < 0.0005), lower KPS (p = 0.001), and drowsiness (p = 0.05) were independently correlated with frequency of prayer.Conclusion:The more the patients have demanding religious issues, the greater the state of anxiety, particularly in older and female patients with a lower KPS. The religious pattern did not have relevant role in the expression of other symptoms included in the ESAS.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-08T08:25:17Z
      DOI: 10.1177/10499091211041349
       
  • Practice Improvement Projects in an Interdisciplinary Palliative Care
           Training Program

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      Authors: Aziz Ansari, Aliza Baron, Holly Nelson-Becker, Catherine Deamant, George Fitchett, Erik Fister, Sean O’Mahony, Stacie Levine
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Demand for palliative care (PC) continues to increase with an insufficient number of specialists to meet the need. This requires implementation of training curricula to expand the workforce of interdisciplinary clinicians who care for persons with serious illness.Objectives:To evaluate the impact of utilizing individual practice improvement projects (PIP) as part of a longitudinal PC curriculum, the Coleman Palliative Medicine Training Program (CPMTP-2).Methods:Participants developed their PIPs based on their institutional needs and through a mentor, and participated in monthly meetings and bi-annual conferences, thereby allowing for continued process improvement and feedback.Results:Thirty-seven interdisciplinary participants implemented 30 PIPs encompassing 7 themes: (1) staff education; (2) care quality and processes; (3) access to care; (4) documentation of care delivered; (5) new program development; (6) assessing gaps in care/patient needs; and (7) patient/family education. The majority of projects did achieve completion, with 16 of 30 projects reportedly being sustained several months after conclusion of the required training period. Qualitative feedback regarding mentors’ expertise and availability was uniformly positive.Conclusion:The CPMTP-2 demonstrates the positive impact of PIPs in the development of skills for interdisciplinary learners as part of a longitudinal training program in primary PC. Participation in a PIP with administrative support may lead to operational improvement within PC teams.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-07T09:15:29Z
      DOI: 10.1177/10499091211044689
       
  • Non-Surgical Management of Malignant Bowel Obstruction in Advanced Ovarian
           Cancer patients: A Systematic Review and Meta-Analysis

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      Authors: Praveena Idaikkadar, Athina Georgiou, Simon Skene, Agnieszka Michael
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Malignant bowel obstruction is a common cause of morbidity and mortality in patients with advanced ovarian cancer. Many patients aren’t suitable for, or decline, surgical decompression. The outcomes for this frail group of patients are not well characterized.Aim:To evaluate survival outcomes of ovarian cancer patients who undergo non-surgical management of malignant bowel obstruction.Design:Systematic review and meta-analysis.Data Sources:Online literature search of Pubmed, Embase and Medline libraries up until December 2020. Searching abstracts of scientific meetings, reference lists of included studies and contacting experts in the field.Selection Criteria:Studies that investigated non-surgical management of confirmed bowel obstruction in advanced ovarian cancer patients were included. All levels of evidence including RCTs, cohort studies and case-series if they included greater than 5 patients.Data Collection and Analysis:The studies were independently chosen by two reviewers who extracted and analyzed the data separately through OpenMeta Analyst software. Study quality was assessed using the JADAD score and the Newcastle Ottawa Score.Results:24 studies met the eligibility criteria for the systematic review and 9 for the meta-analysis. Median survival of patients managed non-surgically for bowel obstruction was 44 days (95% CI 38-49 days, I 2 = 0%, P = 0.128).Conclusion:The quality of studies was relatively low, however the evidence shows that non-surgical management of bowel obstruction results in a short life expectancy but with controlled symptoms. Where quality of life is the main concern, this may be a feasible and effective strategy.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-07T09:14:50Z
      DOI: 10.1177/10499091211043079
       
  • Patients’ Awareness of Advanced Disease Status, Psychological Distress
           and Quality of Life Among Patients With Advanced Cancer: Results From the
           APPROACH Study, India

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      Authors: Aanchal Satija, Sushma Bhatnagar, Semra Ozdemir, Eric Finkelstein, Chetna Maholtra, Irene Teo, Grace Meijuan Yang
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Prognostic disclosure to patients with advanced cancer facilitates treatment decisions and goals of care discussions. However, the perspectives of patients, families and physicians differ in this regard across different cultures. Non-disclosure of cancer diagnosis or prognosis is commonly observed in family-centric cultures such as India.Aim:To assess the prevalence of and factors associated with cancer patients’ awareness of advanced disease status; and its with quality of life and psychological distress.Methods:Patients for this cross-sectional questionnaire-based survey were recruited from oncology and palliative medicine clinics at a tertiary cancer hospital in India from January 2017 to June 2018. Patients aged ≥ 21 years, aware of cancer diagnosis and receiving oncology treatment for Stage IV solid cancer were included in the study after obtaining written informed consent.Results:Two hundred patients were enrolled, of which 146 (73%) were not aware of the stage of their malignancy and 9 (4.5%) believed that their disease was at stage I, II or III. Those who were aware of their advanced cancer stage had more years of education (9.9 years vs 8.1 years, p = .05) and had poorer spiritual wellbeing in the faith domain (adjusted difference −1.6, 95% confidence interval −3.1 to −0.1, p = .03) compared to those who were unaware.Conclusion:It is recommended that future studies may explore prognostic understanding in Indian patients according to their socio-cultural, spiritual and educational background.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-03T09:30:23Z
      DOI: 10.1177/10499091211042837
       
  • Longitudinal Trajectories and Correlates of Post-Caregiving Depressive
           Symptoms in Former Caregivers of Persons With Alzheimer’s Disease or a
           Related Dementia

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      Authors: Kristin Corey Magan, Karen B. Hirschman, Lauren T. Starr, Salimah H. Meghani
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Despite the end of caregiving responsibilities, caregivers’ depressive symptoms continue following the death of the care recipient with Alzheimer’s disease or a related dementia (ADRD). However, long-term patterns of depressive symptoms among ADRD caregivers following the care recipient’s death remain poorly understood.Purpose:To explore longitudinal trajectories and correlates of depressive symptoms in former caregivers of persons with ADRD following the care recipient’s death.Methods:Using the modification of Cooper’s framework presented by Whittemore and Knafl, an integrative review was conducted in 4 stages: problem identification, literature search, data evaluation, and data analysis. The literature search was performed using CINAHL, PubMed, and PsycINFO databases. Articles were included if they were published in English between January 1994 and March 2021, reported in peer-reviewed sources, and described findings of original research related to factors, correlates, or longitudinal patterns of depressive symptoms in former family caregivers following the death of the care recipient with ADRD.Results:Longitudinal trajectories of depressive symptoms were categorized into 3 overarching themes: (1) gradual reduction of depressive symptoms during the first year post-caregiving; (2) failure of depressive symptoms to fully resolve after the first year post-caregiving; and (3) individualized depressive symptom trajectories. Correlates of post-caregiving depressive symptoms were categorized into 3 themes: (1) caregiver personal characteristics; (2) extrinsic factors; and (3) coping resources.Conclusion:These findings indicated that screening for depression and psychosocial support are high priorities during the first year post-caregiving to facilitate early identification of at-risk caregivers and improve mental health outcomes in this population.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-03T09:29:23Z
      DOI: 10.1177/10499091211042836
       
  • Preparedness for Serious Illnesses: Impact of Ethnicity, Mistrust,
           Perceived Discrimination, and Health Communication

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      Authors: Mohsen Bazargan, Sharon Cobb, Shervin Assari, Shahrzad Bazargan-Hejazi
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Increasing severity of serious illness requires individuals to prepare and make decisions to mitigate adverse consequences of their illness. In a racial and ethnically diverse sample, the current study examined preparedness for serious illness among adults in California.Methods:This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. Participants included 542 non-Hispanic White (52%), non-Hispanic Black (28%), and Hispanic (20%) adults who reported at least one chronic medical condition that they perceived to be a serious illness. Race/ethnicity, socio-demographic factors, health status, discrimination, mistrust, and communication with provider were measured. To perform data analysis, we used logistic regression models.Results:Our findings revealed that 19%, 24%, and 34% of non-Hispanic White, non-Hispanic Blacks, and Hispanic believed they were not prepared if their medical condition gets worse, respectively. Over 60% indicated that their healthcare providers never engaged them in discussions of their feelings of fear, stress, or sadness related to their illnesses. Results of bivariate analyses showed that race/ethnicity was associated with serious illness preparedness. However, multivariate analysis uncovered that serious illness preparedness was only lower in the presence of medical mistrust in healthcare providers, perceived discrimination, less communication with providers, and poorer quality of self-rated health.Conclusion:This study draws attention to the need for healthcare systems and primary care providers to engage in effective discussions and education regarding serious illness preparedness with their patients, which can be beneficial for both individuals and family members and increase quality of care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-03T09:28:50Z
      DOI: 10.1177/10499091211036885
       
  • Spiritual Care Assessment and Intervention (SCAI) for Adult Outpatients
           With Advanced Cancer and Caregivers: A Pilot Trial to Assess Feasibility,
           Acceptability, and Preliminary Effects

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      Authors: Shelley E. Varner Perez, Saneta Maiko, Emily S. Burke, James E. Slaven, Shelley A. Johns, Olivia J. Smith, Paul R. Helft, Kathryn Kozinski, Alexia M. Torke
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Although religion and spirituality are important to adults with cancer and their family caregivers, few studies have tested spiritual care interventions in the outpatient setting.Aim:To determine the feasibility, acceptability, and preliminary effects of chaplain-delivered, semi-structured spiritual care to adult outpatients with advanced cancer and their caregivers.Design:In this pre/post pilot intervention study, board-certified chaplains utilized the Spiritual Care Assessment and Intervention (SCAI) framework during 4 individual sessions. Surveys at baseline and at 1, 6, and 12 weeks post-intervention assessed spiritual well-being, quality of life, depression, anxiety, and religious coping.Setting/Participants:We enrolled U.S. adult outpatients with or without an eligible family caregiver. Eligible patients were at least 18 years old and at least 2 weeks post-diagnosis of incurable and advanced-stage lung or gastrointestinal (GI) cancer.Results:Of 82 eligible patients, 24 enrolled (29.3%); of 22 eligible caregivers, 18 enrolled (81.8%). Four planned chaplain visits were completed by 87.5% of patients and 77.8% of caregivers. All enrolled participants completed baseline surveys, and more than 75% completed follow-up surveys at 2 of 3 time points. More than 80% of patients and caregivers reported they would recommend the sessions to a friend or family member. Patients’ spiritual well-being improved significantly at all timepoints compared to baseline: 1-week post (p < .006), 6-weeks post (p < .001), and 12-weeks post (p < .004).Conclusions:Spiritual care through SCAI is feasible, acceptable, and shows promise in improving spiritual well-being and other important outcomes in advanced-stage cancer patients and family caregivers. Further investigation is warranted.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-01T09:19:03Z
      DOI: 10.1177/10499091211042860
       
  • Full Code to Do-Not-Resuscitate: Culturally Adapted Palliative Care
           Consultations and Code Status Change Among Seriously Ill Hispanic Patients
           

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      Authors: Neela K. Patel, Stacey A. Passalacqua, Kylie N. Meyer, Gabriel A. de Erausquin
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Palliative care and hospice services are disproportionately underutilized by ethnic minority patients. Addressing barriers to utilization of these services is critical to reducing disparities. The purpose of this study was to assess the impact of a culturally adapted palliative care consultation service for Hispanics on end-of-life decisions, specifically likelihood of changing from full code to do-not-resuscitate (DNR) status during index admission for serious illness.Methods:A cross-sectional study design was applied to data extracted from electronic health records (EHR) of patients seen by a Geriatric Palliative Care service during inpatient stays between 2018 and 2019. The majority of referrals came from critical care sites. Culturally adapted palliative care consultations using the SPIKES tool featured a Spanish-speaking team member leading discussions, involvement of multiple and key family members, and a chaplain who is a Catholic Priest.Results:The analytic sample included 351 patients who were, on average, 72 years old. 54.42% were female, 59.54% were Hispanic, and of Hispanic patients, 47.37% spoke primarily Spanish. Culturally adapted consults resulted in higher rates of conversion to DNR status in palliative cases of the target population. Both primary language and ethnicity were associated with likelihood of change from full code to DNR status, such that Spanish speakers and those of Hispanic ethnicity were more likely to switch to DNR than non-Hispanics and English-Speakers.Conclusion:This study illustrates how culturally adapted palliative care consultations can help reduce barriers and improve end-of-life decision-making, and can be applied with similar populations of seriously ill Hispanic patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-01T09:18:14Z
      DOI: 10.1177/10499091211042305
       
  • Opportunities to Improve Palliative Care Delivery in Trauma Critical
           Illness

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      Authors: Lindsay Haines, Wei Wang, Michael Harhay, Niels Martin, Scott Halpern, Katherine Courtright
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Despite recommendations to integrate palliative care (PC) into care for critically ill trauma patients, little is known about current PC practices in trauma care to inform opportunities for improvement.Objective:Describe patterns of PC delivery among a large, critically ill trauma cohort.Setting/Subjects:Retrospective cohort study of adult (≥18 years) trauma patients admitted to an intensive care unit (ICU) at an urban, level one trauma center in the United States from March 1, 2017 to March 1, 2019.Methods:We linked the electronic medical record with the institutional trauma registry. PC process measures included a PC consult order, advance care planning (ACP) note, and hospice use. Unadjusted results are reported for the total population, decedents, and subgroups at risk for poor outcomes (age ≥55 years, Black race ≥1 pre-existing comorbidity, and severe injury) after trauma.Results:Among 1309 eligible admissions, 902 (68.9%) were male, 640 (48.9%) were Black, and 654 (50.0%) were ≥55 years old. Eighty-one (6.2%) patients received a PC consult order, 66 (5.0%) had an ACP note, and 13 (1.1%) were discharged to hospice. Among decedents (N = 91; 7%), 28 (30.8%) received a PC consult order and 36 (39.6%) had an ACP note. For high-risk subgroups, PC consult orders and ACP note rates ranged from 4.5-12.8% and 4.5-11.8%, respectively.Conclusion:PC delivery was rare among this cohort, including those at high risk for poor outcomes. Urgent efforts are needed to identify barriers to and develop targeted interventions for high quality PC delivery in trauma ICU care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-09-01T09:17:35Z
      DOI: 10.1177/10499091211042303
       
  • Leveraging Emergency Department Information Systems to Address Palliative
           Care Needs of ED Patients During the COVID Pandemic

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      Authors: Audrey J. Tan, Jordan Swartz, Christine Wilkins, Corita Grudzen
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The arrival of the COVID-19 pandemic to hospitals in New York City stressed our emergency departments (ED) with high patient volume, stresses on hospital resources and the arrival of numerous high acuity, critically ill patients. Amid this time, we sought to leverage the ED Information Systems (EDIS), to assist in connecting critically ill patients, their families, and providers in the ED with palliative care resources. We discuss 4 innovative, thoughtful solutions to assist ED providers in identifying and addressing the acute and unique palliative care needs of COVID patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-31T09:20:49Z
      DOI: 10.1177/10499091211042854
       
  • Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A
           Qualitative Study

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      Authors: Meena Kalluri, Sara Orenstein, Nathan Archibald, Charlotte Pooler
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Advance care planning is recommended in chronic respiratory diseases, including Idiopathic Pulmonary Fibrosis. In practice, uptake remains low due to patient, physician and system-related factors, including lack of time, training and guidance on timing, components and content of conversations. Our aim was to explore perspectives, experiences and needs to inform a framework.Methods:We conducted a qualitative study in western Canada, using semi-structured interviews and inductive analysis. Patient, caregiver and health care professional participants described advance care planning experiences with Idiopathic Pulmonary Fibrosis.Results:Twenty participants were interviewed individually: 5 patients, 5 caregivers, 5 home care and 5 acute care health care professionals. Two categories, perceptions and recommendations, were identified with themes and subthemes. Participant perceptions were insufficient information and conversations occur late. Recommendations were: have earlier conversations; have open conversations; provide detailed information; and plan for end-of-life. Patients and caregivers wanted honesty, openness and clarity. Professionals related delayed timing to poor end-of-life care and distressing deaths. Home care professionals described comfort with and an engaged approach to advance care planning. Acute care professionals perceived lack of clarity of roles and described personal, patient and caregiver distress.Interpretation:Analysis of diverse experiences provided further understanding of advance care planning in Idiopathic Pulmonary Fibrosis. Advance care planning is desired by patients and caregivers early in their illness experience. Health care professionals described a need to clarify role, scope and responsibility. Practical guidance and training must be available to care providers to improve competency and confidence in these conversations.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-26T08:57:54Z
      DOI: 10.1177/10499091211041724
       
  • Latino Families’ Decisions to Accept Hospice Care

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      Authors: Susanny J. Beltran
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:The underrepresentation of Latinos in hospice care is well-documented. A gap remains, however, in the literature’s description of the factors that shape Latino families’ decisions to enroll in hospice care. The need for such understanding is dire considering the shifts in population and the research evidence that Latinos experience worse end-of-life outcomes compared to non-Latino whites. This study contributes to such understanding by exploring Latino older adults’ experiences with healthcare broadly and reasons for choosing hospice care specifically, including how they learned about hospice and their understanding of the service at the time of enrollment.Methods:Semi-structured interviews were conducted with 13 hospice-enrolled Latinos 65 or older, or their decision-making proxies. Qualitative data was analyzed using thematic analysis.Results:Findings show that hospice represents a way to access services, and not necessarily a philosophy of care that Latinos understand or seek at end of life.Conclusion:Healthcare providers such as hospital and hospice social workers must engage in efforts to enhance advance care planning discussions and hospice education with the Latino community.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-25T09:18:01Z
      DOI: 10.1177/10499091211042336
       
  • Quality of Communication Questionnaire for Hospitalized Patients
           Hospitalized in Intensive and Palliative Care Unit: Validity Evidence for
           Use in Brazil

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      Authors: Flávia Del Castanhel, Luciana Burg, Leonardo Maia Nogueira, Getúlio Rodrigues de Oliveira Filho, Suely Grosseman
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The Quality of Communication Questionnaire (QoC) was culturally adapted for Brazil due to its importance and use in several studies and different scenarios. The objective of this study was to evaluate the validity evidence of the Brazilian version of the QoC. A validation study was carried out involving 253 patients admitted to five public hospitals in Southern Brazil. Data were analyzed using descriptive analysis, Cronbach's alpha (α) to assess internal consistency, exploratory factor analysis, and goodness-of-fit index. One hundred and three patients were in intensive care (IC), and 150 were in palliative care (PC). The participants’ mean age was 51 years (SD = 14.2). QoC,and its general communication subscale, and end-of-life communication subscale means were 5.5 (SD = 1.6), 8.8 (SD = 1.5), and 5.5 (SD = 1.6) respectively. Among patients in IC, QoC Cronbach’s alpha was .75, and .84 in the general communication subscale and .51 in the end-of-life communication subscale. Among patients in PC, QoC Cronbach’s alpha was .83, and .88 in the general communication subscale, and .71 in the end-of-life communication subscale. The root mean square error of approximation was .07 (90% CI: .04 – .08); Tucker-Lewis index was .97 (95% CI: .95 – .98); comparative fit index was .98 (95% CI: .97 – .99), and χ2/df ratio was 1.33 (χ2[53] = 70.858, p = .05). The authors conclude that the general communication subscale of QoC Brazilian version has good validity evidence for patients in IC and PC, whereas the end-of-life communication subscale is only valid for patient in PC.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-24T09:16:15Z
      DOI: 10.1177/10499091211041347
       
  • Diagnosis Disclosure Preferences of Cancer Patients in Egypt: A
           Multi-Institutional Cross-Sectional Study

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      Authors: Ahmed Abdel-hafeez, Hadeer I. Abdel-Aziz, Ahmad Hassan, Dina E. Farag, Wessam A. El-Sherief, Hesham H. Abdel-Aal, Samy A. Alsirafy
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Although diagnosis disclosure to cancer patients has important roles in cancer care, it is not a routine practice in countries like Egypt. Respecting patients’ autonomy and responding to their preferences are among the factors that should guide the practice of cancer diagnosis disclosure.Objectives:To assess the preferences of Egyptian cancer patients regarding the disclosure of cancer diagnosis and to determine factors that may affect their preferences.Methods:The study included 295 patients aware of their cancer diagnosis from 3 cancer care facilities in Egypt. Patients were asked if they would have preferred to be informed of the diagnosis or not, whom they would have preferred to receive the diagnosis information from, and if they would have preferred to tell their families or not.Results:The vast majority (91%) of the included patients preferred to be informed about their diagnosis, 59% preferred to disclose the diagnosis to their families and 66% preferred to receive the diagnosis information from a physician. In univariate analysis, male gender, higher education level and employment were significantly associated with the preference for disclosure. None of the studied variables associated significantly with the preferences in multivariate analysis.Conclusion:The majority of Egyptian cancer patients in our study preferred to be informed about their diagnosis, which should be respected. The results may help in changing the diagnosis disclosure practice of health care professionals and refuting the misconception of family caregivers about cancer diagnosis disclosure in Egypt and countries with similar culture.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-24T09:15:35Z
      DOI: 10.1177/10499091211041082
       
  • Examining the Association of Billed Advance Care Planning With End-of-Life
           Hospital Admissions Among Advanced Cancer Patients in Hospice

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      Authors: Laura C. Prater, Brian O’Rourke, Patrick Schnell, Wendy Xu, Yiting Li, Jillian Gustin, Bethany Lockwood, Maryam Lustberg, Susan White, Mary Beth Happ, Sheldon M. Retchin, Thomas M. Wickizer, Seuli Bose-Brill
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Advance care planning (ACP), or the consideration and communication of care preferences for the end-of-life (EOL), is a critical process for improving quality of care for patients with advanced cancer. The incorporation of billed service codes for ACP allows for new inquiries on the association between systematic ACP and improved EOL outcomes.Objective:Using the IBM MarketScan® Database, we conducted a retrospective medical claims analysis for patients with an advanced cancer diagnosis and referral to hospice between January 2016 and December 2017. We evaluated the association between billed ACP services and EOL hospital admissions in the final 30 days of life.Design:This is a cross-sectional retrospective cohort study.Participants:A total of 3,705 patients met the study criteria.Main Measures:ACP was measured via the presence of a billed ACP encounter (codes 99497 and 99498) prior to the last 30 days of life; hospital admissions included a dichotomous indicator for inpatient admission in the final 30 days of life.Key Results:Controlling for key covariates, patients who received billed ACP were less likely to experience inpatient hospital admissions in the final 30 days of life compared to those not receiving billed ACP (OR: 0.34; p < 0.001).Conclusion:The receipt of a billed ACP encounter is associated with reduced EOL hospital admissions in a population of patients with advanced cancer on hospice care. Strategies for consistent, anticipatory delivery of billable ACP services prior to hospice referral may prevent potentially undesired late-life hospital admissions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-24T09:10:54Z
      DOI: 10.1177/10499091211039449
       
  • Palliative Care Unit at Home: Impact on Quality of Life in Cancer Patients
           at the End of Life in a Rural Environment

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      Authors: Maria Elena Iriarte Moncho, Vicente Palomar-Abril, Teresa Soria-Comes
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Advanced cancer is accompanied by a substantial burden of symptoms, and palliative care (PC) plays an essential role, especially at the end of life (EOL). In fact, a comprehensive PC through Home Palliative Care Units (HPCU) has been associated with reducing potentially aggressive care at the EOL. We aim to study the impact of HPCU on the quality of assistance of cancer patients at Alcoy Health Department.Methods:A retrospective study was conducted including patients diagnosed with terminal cancer at the Medical Department of Hospital Virgen de los Lirios who died between January 2017 and December 2018. The Multivariate Cox regression model was used to assess the impact of HPCU assistance on the quality of life indicators.Results:388 patients were included. The median age was 71 years; 65% patients were male, and 68% presented with a 0-2 score on the ECOG scale. On the multivariate analysis, a lack of assistance by HPCU was associated with a higher risk of consulting in the emergency department (OR = 1.29, 95% CI: 1.02-1.67), of hospital admissions (OR = 4.72, 95% CI: 2.45-9.09), a higher probability of continuing active treatment (OR = 2.59, 95% CI: 1.44-4.67), and a greater probability of dying in hospital (OR = 6.52, 95% CI: 3.78-11.27).Conclusions:Patients receiving HPCU assistance have a lower number of emergency room visits and hospital admissions, and are more likely to die at home. Taken together, these results support the relevance of HPCU providing a high quality attention of cancer patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-24T09:10:15Z
      DOI: 10.1177/10499091211038303
       
  • Posterior Reversible Encephalopathy Syndrome (PRES) in Palliative
           Medicine: Case Report and Discussion

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      Authors: Jade Willey, Steven J. Baumrucker
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Posterior reversible encephalopathy syndrome (PRES) is associated with seizures, visual disturbances, headache, and altered mental status. Given its presentation, the diagnosis can be mistaken for other severe conditions. Palliative medicine consultants should be aware of PRES and be prepared to counsel families on the treatment and prognosis of this syndrome.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-24T09:02:41Z
      DOI: 10.1177/10499091211030465
       
  • Clinician Ethical Perspectives on Extracorporeal Membrane Oxygenation in
           Practice

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      Authors: Gina M. Piscitello, Rene S. Bermea, John W. Stokes, Whitney D. Gannon, Anthony J. Kanelidis, Megan Konopka, Claire Shappell, Laura K. Frye, Patrick G. Lyons, Mark Siegler, William F. Parker
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:Extracorporeal membrane oxygenation (ECMO) is an expensive and scarce life sustaining treatment provided to certain critically ill patients. Little is known about the informed consent process for ECMO or clinician viewpoints on ethical complexities related to ECMO in practice.Methods:We sent a cross-sectional survey to all departments providing ECMO within 7 United States hospitals in January 2021. One clinician from each department completed the 42-item survey representing their department.Results:Fourteen departments within 7 hospitals responded (response rate 78%, N = 14/18). The mean time spent consenting patients or surrogate decision-makers for ECMO varied, from 7.5 minutes (95% CI 5-10) for unstable patients to 20 minutes (95% CI 15-30) for stable patients (p = 0.0001). Few clinician respondents (29%) report patients or surrogate decision-makers always possess informed consent for ECMO. Most departments (92%) have absolute exclusion criteria for ECMO such as older age (43%, cutoffs ranging from 60-75 years), active malignancy (36%), and elevated body mass index (29%). A significant minority of departments (29%) do not always offer the option to withdraw ECMO to patients or surrogate decision-makers. For patients who cannot be liberated from ECMO and are ineligible for heart or lung transplant, 36% of departments would recommend the patient be removed from ECMO and 64% would continue ECMO support.Conclusion:Adequate informed consent for ECMO is a major ethical challenge, and the content of these discussions varies. Use of categorical exclusion criteria and withdrawal of ECMO if a patient cannot be liberated from it differ among departments and institutions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-20T09:16:35Z
      DOI: 10.1177/10499091211041079
       
  • Does Caregiver Participation in Advance Care Planning Using a Decision
           Support Tool Together With Patients Reduce Caregiver Strain, Burden and
           Anxiety Over Time' A Post-Hoc Analysis of a Randomized Controlled
           Trial

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      Authors: Bronson R. Kunzler, Andrew J. Foy, Benjamin H. Levi, Lauren J. Van Scoy, Erik B. Lehman, Theresa J. Smith, Michael J. Green
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Surrogate decision makers experience significant amounts of anxiety, burden, and strain in their role as caregivers and decision makers for loved ones.Objectives:To investigate longitudinally whether surrogate decision makers engaging in ACP together with their loved one reduces perceived anxiety, burden, and strain felt by surrogate decision makers.Methods:Post-hoc analysis of a randomized controlled trial evaluating caregivers’ perceived self-efficacy to serve as surrogate decision makers. The trial employed a 2×2 study design of patient/caregiver dyads who engaged in advance care planning (ACP) using a standard living will form vs “Making Your Wishes Known” (MYWK), and having the patient engage in ACP alone vs together with the family caregiver. Surrogates completed validated survey instruments surveys longitudinally to compare levels of anxiety, burden, and strain.Results: 246 of 285 dyads completed the measures. No significant reductions in anxiety, burden, or strain were found longitudinally in surrogate decision makers using MYWK together with loved one’s vs other control groups. Increases in strain and anxiety were seen across all study groups and increases in burden across 2/4 study groups. Strain and burden increased most in the MYWK Together arm (▴ = +2.22 and ▴ = +1.91 respectively).Conclusion:Family caregivers who engaged in ACP together with patients using the decision support tool MYWK did not experience less strain, burden, or anxiety longitudinally compared to other study arms. These results may help inform the design of future studies and interventions that promote caregivers’ involvement in ACP interventions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-20T09:15:56Z
      DOI: 10.1177/10499091211040233
       
  • Palliative Care for the Interstitial Lung Disease Patient a Must and Not
           Just a Need

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      Authors: Said Chaaban, James McCormick, Debra Gleason, Jessica M. McFarlin
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Patients with interstitial lung disease (ILD) have many unmet palliative care needs. The majority of patients with chronic ILD have poor access to a specialist in palliative medicine and that is due to several barriers. The mortality for the ILD patient is high and reaches up to 80% if admitted to the ICU with respiratory failure. Palliative care addresses symptoms in diseases where cure is unlikely or impossible. Palliative care consultation also ensures communication among patients, caregivers and providers regarding treatments, prognosis, and end of life planning. Methods: We performed a literature review on palliative care and ILD, accessing articles published since 2002. We found 71 articles related to the topic. We chose 37 that were most relevant and with no redundancy of information to include in this review. Objectives: Summarize the palliative care needs of patients with ILD, discuss the barriers to receiving palliative care, and summarize clinical practice for providing palliative care to this patient population.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-19T09:29:57Z
      DOI: 10.1177/10499091211040232
       
  • Gabapentinoid Dosing and Associated Toxicities in Patients With or Without
           Concomitant Opioids During Hospitalization

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      Authors: Thanh Gia Tu, Sohrab Sadeghi, Rabia Atayee, Kelly Lee
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Gabapentinoid drugs (gabapentin and pregabalin) are increasingly used for pain as both patients and physicians seek opioid-sparing or opioid-reducing strategies. Such widespread use for off-label pain indications is not supported by robust evidence, risking potential unintended consequences relating to adverse events. This study evaluated adult patients who were administered at least one dose of a gabapentinoid during a hospital admission between January 1, 2018 and December 31, 2018. The primary objective was to compare the difference in administered gabapentinoid total daily dose in patients with or without concomitant opioid. Secondary objectives included comparing the difference in sedation documentation, renal function, fall risk scores using the Hester Davis Fall Risk Scale, and central nervous system (CNS) related side effects between the 2 study groups. Four hundred and ninety nine patients (pregabalin n = 32 and gabapentin n = 467) were included. Due to small sample size for pregabalin, outcome results were presented for gabapentin only. The mean gabapentin total daily dose was 706 mg (SD = 614 mg) in the non-opioid group versus 860 mg (SD = 553 mg) in the opioid group (p = 0.007). There was more sedation documentation observed in the opioid group (p < 0.001). Patients in the opioid group used a significantly higher gabapentinoid total daily dose. Sedation documentation was significantly more in the opioid group despite commonly reported CNS related adverse events with gabapentinoids.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-19T09:29:06Z
      DOI: 10.1177/10499091211040231
       
  • Effectiveness of Educational Programs on Palliative and End-of-life Care
           in Promoting Perceived Competence Among Health and Social Care
           Professionals

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      Authors: Kelly Tsz Ching Wong, Amy Yin Man Chow, Iris Kwan Ning Chan
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There is a growing need for palliative care for patients near the end of life and their caregivers. Palliative and end-of-life care (EoLC) education are recommended for all health care (e.g., physicians, nurses, and allied health practitioners) and social care professionals (e.g., social workers) to ensure the quality of services. However, less attention has been afforded to generic, in contrast to specialized, EoLC education. This study evaluated the effectiveness of a series of short-term generic EoLC educational programs for health and social care professionals.Method:A pre-post survey design was adopted, focusing on different EoLC core competences.Results:Significant improvement was observed in all perceived competences after the educational programs, regardless of participants’ occupation or EoLC experience. Perceived competence in self-care was rated significantly higher than all other competences prior to the programs. Healthcare professionals rated significantly higher on competence in symptom management than social workers. Scores on communication skill and self-care competences were significantly higher following longer (i.e., 16-24 hours) than shorter (i.e., 4-8 hours) programs.Conclusion:Generalist palliative/EoLC educational programs may enable health and social care professionals to refresh and extend their knowledge and skills and enhance their perceived competence in providing EoLC. Further research on generalist palliative/EoLC education is needed to examine the impact of continuing training on professionals’ actual practice in EoLC and palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-19T09:28:37Z
      DOI: 10.1177/10499091211038501
       
  • Valproic Acid in the Management of Delirium

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      Authors: Carlos Fernandez Cuartas, Mellar Davis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Antipsychotics and benzodiazepines do not improve delirium. Valproic acid (VPA) has been used recently to treat agitation in delirium.Objectives:To review the evidence for VPA in the management of Delirium.Methods:Systematic review. English language, age 19 and above, from 1946 to January 12, 2021.Mesh Terms:“Valproic acid”, “valproate”, “sodium valproate”, “delirium”, “acute mania with delirium” in PubMed and Ovid.Exclusion:Studies of VPA used for diagnoses other than delirium.Results:21 abstracts were identified and 10 studies were included in the review (252 patients): One prospective open label study (n: 7), 2 case series (n: 22), 4 retrospective studies (n: 219) and 3 case reports (n: 4). No randomized controlled trial (RCT) evaluates the effect of VPA in delirium. 237/250 (94.8%) patients were in the ICU. Mean age was 59.7 (27-87). 153/204 (74%) were male. The mean starting dose was 733 mg/day in 148 patients and the mean dose at follow up was 1061 mg/day in 205 patients. CAM ICU was used to diagnose delirium in 6 reviews. Delirium improved in case series in 19/22 patients. Delirium improved in retrospective studies at day 3 compared to day 1. VPA levels were not consistently reported. Hyperammonemia (12-19%) and thrombocytopenia (9-13%) were the most common side effects. No deaths were attributed to VPA.Conclusion:VPA is being used more frequently for delirium. The evidence is limited to retrospective studies and case series. There is a need for RCT to evaluate the effect of VPA in delirium compared to other alternatives and placebo.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-19T09:27:57Z
      DOI: 10.1177/10499091211038371
       
  • A National Survey of Social Workers Focusing on Attitudes, Knowledge, and
           Practice Behaviors for Educating Patients About Advance Directives:
           Implication During COVID19

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      Authors: Frances R. Nedjat-Haiem, Tamara J. Cadet, Humberto Parada, Shiraz I. Mishra, Karen Bullock
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Social workers have a critical role on medical teams for facilitating effective conversations about advance care planning (ACP) in palliative and end-of-life care. Engaging patients in such conversations may be influenced by clinicians’ attitudes. During the COVID19 pandemic, the need to examine barriers to serious illness care across healthcare settings and areas of specialty practice became abundantly clear. This study examines: (1) social workers’ attitudes about ACP and (2) factors that influence the completion of advance directives (ADs). Using a cross-sectional study design, we surveyed 142 social workers on their knowledge, attitudes, and behaviors related to ADs. Using exploratory factor analyses, we identified 2 provider practice attitudes factors, 3 perceived barriers factors, and 2 perceived importance of AD factors. We then used logistic regression to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for each of the factors in association with the frequency social workers reported educating patients about ADs. While various positive and negative attitudes and barriers toward educating patients are important factors to consider, social workers’ perceptions of the importance of engaging patients in ACP education was the most important factor that influenced their behaviors. The odds of always/often (vs. sometimes/rarely/never) educating patients about ADs in their practice were greater for those social workers who reported they see the importance of AD decision-making (OR = 3.21, 95%CI = 1.83-5.62) and confirming goals-of-care (OR = 1.76, 95%CI = 1.03-3.01). Social worker’s ACP knowledge and skills for educating patients are important in initiating conversations prior to a health crisis, especially important for developing a comprehensive care plan.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-19T09:18:53Z
      DOI: 10.1177/10499091211038503
       
  • Prevention of Steroid-Induced Neuropsychiatric Complications With
           Neuroleptic Drugs: A Review

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      Authors: Ivy Akid, Suzanne Nesbit, Julie Nanavati, Oscar Joseph Bienvenu, Thomas J. Smith
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Corticosteroids are used for a multitude of indications in palliative patients. In this narrative review, we aim to review literature on the treatment and prevention of neuropsychiatric complications of steroids. For prevention, only lamotrigine had a positive effect in a small number of studies. For treatment, olanzapine appears to be nearly universally effective at low doses, but randomized trial evidence is lacking. Further randomized clinical trials are necessary to elucidate data-driven guidelines for prevention and treatment of corticosteroid-induced neuropsychiatric symptoms. Until further data are available, it is reasonable to consider low dose olanzapine for any patient taking 40 mg of prednisone or its equivalent, especially those with a history of depression or neuropsychiatric symptoms.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-13T09:04:35Z
      DOI: 10.1177/10499091211034771
       
  • Advance Care Planning in Chronically Ill Patients With an Episodic Disease
           Trajectory in the Acute Care Setting: A Quality Improvement Project

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      Authors: Molly T. Williams, Mohana Karlekar, Anne Coogan, Megan Shifrin, Judy Ascenzi
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Advance care planning (ACP) is a fluid discussion between patients and providers to define preferences for future medical care. In the acute care setting, ACP is limited due to lack of structured process for identifying persons who may benefit from ACP. This quality improvement (QI) project aimed to increase the frequency of ACP discussions and documentation of preferences by targeting geriatric patients with an episodic disease trajectory for ACP.Methods:This project used an intervention and comparison group design to target English-speaking, geriatric adults at a large academic medical center with a diagnosis of NYHA class III/IV HF and/or GOLD criteria III/IV COPD for ACP discussions. The intervention group was compared to a group with a range of diagnoses who were approached in a non-systematic way.Results:Thirteen (n = 13) participants completed all aspects of the QI project. Results showed a non-significant increase in the number of patients with a diagnosis of HF and/or COPD who participated in an ACP discussion when compared to the comparison group (n = 20, p = 0.131), as well as a non-significant increase in the number of ACP tools documented in the HER (53.8% compared to 30%) (x = 1.877, p = 0.171).Conclusion:While this project demonstrated non-significant statistical results in the incidence and documentation of an ACP tool, this project increased the number of ACP discussions had, which is clinically significant.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-11T09:30:14Z
      DOI: 10.1177/10499091211036706
       
  • Sexuality and Intimacy Needs Within a Hospitalized Palliative Care
           Population: Results From a Qualitative Study

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      Authors: Anne Kelemen, Clara Van Gerven, Katherine Mullins, Hunter Groninger
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Palliative care (PC) clinicians are well trained to address physical, psychosocial and spiritual needs of patients who have a serious illness. However, one area that is often overlooked is intimacy and sexuality.Objective:To explore patient concerns regarding intimacy as it relates to illness, family reactions, physician conversations, and coping strategies and challenges.Methods:Eligible subjects (at least 18 years old, capacitated, receiving PC consultation at the lead author’s institution) participated in semi-structured interviews between November and December 2017. Transcripts were open-coded and analyzed using Dedoose 3.5.35 software. A constant comparative method was used to identify patterns in the data.Results:21 interviews were analyzed and several themes emerged. Participants described the effect of physical and mental/emotional changes on their relationships. Family relationships, romantic relationships, and sexuality were prominent in patients’ experiences of intimacy and how it changed as the illness progressed. Relationships were often noted to strengthen during the course of illness, while sexual activity was frequently reported to be negatively impacted. Patients consistently reported little provider communication on the impact of illness on intimacy beyond instructions about what sexual activities they could or could not engage in.Conclusion:This study underlines the significant impact of serious, progressive illness on relationships, sexuality, and physical and emotional intimacy. It highlights that these topics continue to be priorities for patients with serious illness, and that medical teams frequently fail to address them at all. Future research should further explore these issues across diverse patient populations.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-10T08:50:29Z
      DOI: 10.1177/10499091211036928
       
  • Does Culture Matter' Young and Middle-Aged Iranian-American Adults’
           Perspectives Regarding End-of-Life Care Planning

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      Authors: Zahra Rahemi, Veronica Parker
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:An increase of cultural diversity and treatment options offer opportunities and challenges related to end-of-life (EOL) care for healthcare providers and policymakers. EOL care planning can help reduce confusion and uncertainty when individuals and family members need to make decisions about EOL care options.Objective:The purpose of this study was to investigate preferences, attitudes, and behaviors regarding EOL care planning among young and middle-aged Iranian-American adults.Methods:A cross-sectional national sample of 251 Iranian-American adults completed surveys. Paper and online surveys in English and Persian were offered to potential participants.Results:All the participants completed online survey in English language. In incurable health conditions, 56.8% preferred hospitalization and intensive treatments. From the 40.6% participants who preferred comfort care, most preferred care at home (29.5%) compared to an institution (11.1%). Those who preferred hospitalization at EOL mostly preferred intensive and curative treatments. The mean score of attitudes toward advance decision-making was moderately high (11.48 ± 2.77). Favorable attitudes were positively associated with acculturation (r = .31, p < .001), age (r = .15, p < .05), and number of years living in the U.S. (r = .26, p < .001). Conversely, spirituality and favorable attitudes were negatively associated (r = −.17, p < .05).Conclusion:Immigrant and culturally diverse individuals have experienced different living and healthcare environments. These differences can influence their EOL care planning and decisions. Knowledge of diverse perspectives and cultures is essential to design culturally congruent plans of EOL care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-09T08:19:56Z
      DOI: 10.1177/10499091211036894
       
  • Goals of Care Discussions Over the Course of a Patient’s End of Life
           Admission: A Retrospective Study

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      Authors: Natalie Perera, Michelle Gold, Lisa O’Driscoll, Naomi T. Katz
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:As deaths in hospitals increase, clear discussions regarding resuscitation status and treatment limitations, referred to as goals of care (GOC), are vital. GOC may need revision as disease and patient priorities change over time. There is limited data about who is involved in GOC discussions, and how this changes as patients deteriorate in hospital.Aims:To review the timing and clinicians involved in GOC discussions for a cohort of patients who died in hospital.Methods:Retrospective observational audit of 80 consecutive end of life admissions between March 11th and April 9th, 2019.Results:Of 80 patients, 75 (93.6%) had GOC recorded during their admission, about half for ward-based non-burdensome symptom management or end-of-life care. GOC were revised in 68.0% of cases. Medical staff involved in initial versus final GOC discussions included home team junior doctor (54.7% versus 72.5%), home team consultant (37.3% versus 56.9%) and ICU doctor (16.0% versus 21.6%). For initial versus final GOC decisions, patients were involved in 34.7% versus 31.4%, and family in 53.3% versus 86.3%. Dying was documented for 92.0% of patients and this was documented to have been communicated to the family and patient in 98.6% and 19.5% of cases respectively.Conclusions:As patients deteriorated, family and senior clinician involvement in GOC discussions increased, but patient involvement did not. Junior doctors were most heavily involved in discussions. We advocate for further GOC training and modeling to enhance junior doctors’ confidence and competence in conducting and involving patients and families in GOC conversations.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-06T09:15:29Z
      DOI: 10.1177/10499091211035322
       
  • Harnessing New and Existing Virtual Platforms to Meet the Demand for
           Increased Inpatient Palliative Care Services During the COVID-19 Pandemic:
           A 5 Key Themes Literature Review of the Characteristics and Barriers of
           These Evolving Technologies

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      Authors: Holly R. Cherniwchan
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      The COVID-19 pandemic has increased the demand for end-of-life services and bereavement support, and in many areas of the world, in-person palliative care is struggling to meet these needs. Local infection control measures result in limited visitation rights in hospital and patients are often dying alone. For many years, virtual platforms have been used as a validated alternative to in-person consults for outpatient and home-based palliative care; however, the feasibility and acceptability of a virtual inpatient equivalent is less studied. Virtual inpatient palliative care may offer a unique opportunity for patients to have meaningful interactions with their care team and family while isolated in hospital or in hospice. This narrative review examines strategies employed during the COVID-19 pandemic to implement virtual palliative care services in the inpatient setting. Five key themes were identified in the literature between January 2020-March 2021 in the LitCovid NCBI database: 1) overall acceptability of virtual inpatient palliative care during the pandemic, 2) important logistical considerations when developing a virtual inpatient palliative care platform, 3) commonly used technologies for delivering virtual services, 4) strategies for harnessing human resources to meet increased patient volume, and 5) challenges of virtual inpatient palliative care implementation. Upon review, telepalliative care can meet the increased demand for safe and accessible inpatient palliative care during a pandemic; however, in some circumstances in-person services should still be considered. The decision for which patients receive what format of care—in-person or virtual—should be decided on a case-by-case basis.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-06T09:08:28Z
      DOI: 10.1177/10499091211036698
       
  • Lessons Learned From a Pilot Project on Telemedicine Advance Care Planning
           in an Urban Geriatric Primary Care Office

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      Authors: Olivia M. Seecof, Molly Allanoff, John Liantonio, Susan Parks
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Purpose:There is a dearth of literature regarding the documentation of advance care planning (ACP) in the geriatric population, despite the controversial, yet well-studied need for ACP. The purpose of this pilot study was to provide an update to a prior study from our institution that outlined the need for increased documentation of advance care planning (ACP) in an urban geriatric population.Methods:Our study involved using telemedicine to conduct dedicated ACP visits and an electronic medical record (EMR) note-template specifically designed for these visits in an attempt to increase the amount of documented ACP in the EMR in this population.Results:The study did not yield significant results due to the inability to schedule enough patients for these dedicated visits.Discussion:While our study was ultimately unsuccessful, 3 crucial lessons were identified that will inform and fuel future interventions by the authors to further the study of documentation of ACP.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-05T09:17:05Z
      DOI: 10.1177/10499091211036978
       
  • Roleplay as an Educational Strategy in Palliative Care: A Systematic
           Integrative Review

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      Authors: Lucas Mariano Santos Novaes, Eliza Mara das Chagas Paiva, Aoife O’Mahony, Ana Cláudia Mesquita Garcia
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Simulation activities, such as roleplay, have become established in undergraduate and graduate education in several subjects of healthcare. The objective of this study was to synthesize the evidence available in the literature on the use of roleplay as an educational strategy in palliative care.Methods:Using the method proposed by Whittemore and Knafl, this integrative systematic review was carried out based on the following guiding question: “What is the available evidence in the literature on the use of roleplay as an educational strategy in the teaching of palliative care'” The databases used for the selection of articles were the following: Web of Science, Scopus, Cochrane Library, PubMed, CINAHL, EMBASE, and LILACS. There were no limitations regarding the year of publication or language.Results:The articles (n = 34) were grouped into 3 categories, according to the purpose of roleplay use: 1) Use of roleplay as an educational strategy to teach communication in palliative care; 2) Use of roleplay as an educational strategy to teach the communication of bad news, and 3) Use of roleplay as an educational strategy to teach end-of-life care.Conclusion:Roleplay has been employed in the teaching of palliative care in order to develop skills related to communication and to the provision of end-of-life care. These educational activities have mainly been directed to healthcare students and professionals. Future investigations should further evaluate the efficacy of this teaching strategy, based on studies with more robust designs that allow the establishment of cause-and-effect relationships.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-05T09:16:33Z
      DOI: 10.1177/10499091211036703
       
  • Ethics Roundtable: The Case of the Surrogate Versus the Living Will

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      Authors: Steven J. Baumrucker, Keelin F. Roche, Matt Stolick, Scott Boyles, Gregory T. Carter, Eddy R. Smith, Angela Eastridge
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-04T09:02:00Z
      DOI: 10.1177/10499091211035309
       
  • Respiratory Distress in Hospitalized Non-Mechanically Ventilated COVID-19
           Adults: A Retrospective Multicenter Cohort Study

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      Authors: Tara Liberman, Santiago Lopez, Regina Roofeh, Stephanie Izard, Sima Parikh, Edith Burns
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:COVID-19 typically presents with respiratory symptoms which may progress with severe disease. There are standard guidelines for managing respiratory distress (e.g. opioids, anxiolytics) and palliative care teams are well versed in managing these symptoms.Aim:Determine the extent to which hospitalized COVID-19 patients with moderate respiratory distress received medications or palliative consultation for symptom management and if these interventions had any association with outcomes.Design:Retrospective chart review for hospitalized COVID-19+ patients from March 2-April 30, 2020.Setting:Large integrated health system in the New York Metropolitan area.Patients:312 adult patients hospitalized with COVID-19 with an order for a non-rebreather mask and meeting criteria for moderate respiratory distress on the Respiratory Distress Observation Scale: concurrent respiratory rate ≥30 and heart rate ≥110 at any point during hospitalization. Patients receiving mechanical ventilation or intensive care were excluded.Results:Most COVID-19 patients experiencing moderate respiratory distress did not receive medications or palliative consultation for symptom management. Patients who received medications were predominantly white, older, and had a Do-Not-Resuscitate order. Patients who received a palliative consultation were more likely to be older, female, and white, with a Do-Not-Resuscitate order. Mortality was similar between those receiving medication and those who did not.Conclusion:Medications and palliative expertise for symptom management were underused for patients with moderate respiratory distress due to COVID-19. Education and triggers may help providers to identify moderate respiratory distress and consider symptomatic treatment and palliative consultation when appropriate.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-08-04T08:55:07Z
      DOI: 10.1177/10499091211036702
       
  • New Developments in End-of-Life Teaching for Roman Catholic Healthcare:
           The Implications of Samaritanus Bonus (“The Good Samaritan”)

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      Authors: Michael J. Redinger, Jason T. Eberl
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.

      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-29T09:07:10Z
      DOI: 10.1177/10499091211034365
       
  • Hospice Enrollment, Future Hospitalization, and Future Costs Among
           Racially and Ethnically Diverse Patients Who Received Palliative Care
           Consultation

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      Authors: Lauren T. Starr, Connie M. Ulrich, G. Adriana Perez, Subhash Aryal, Paul Junker, Nina R. O’Connor, Salimah H. Meghani
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Palliative care consultation to discuss goals-of-care (“PCC”) may mitigate end-of-life care disparities.Objective:To compare hospitalization and cost outcomes by race and ethnicity among PCC patients; identify predictors of hospice discharge and post-discharge hospitalization utilization and costs.Methods:This secondary analysis of a retrospective cohort study assessed hospice discharge, do-not-resuscitate status, 30-day readmissions, days hospitalized, ICU care, any hospitalization cost, and total costs for hospitalization with PCC and hospitalization(s) post-discharge among 1,306 Black/African American, Latinx, White, and Other race PCC patients at a United States academic hospital.Results:In adjusted analyses, hospice enrollment was less likely with Medicaid (AOR = 0.59, P = 0.02). Thirty-day readmission was less likely among age 75+ (AOR = 0.43, P = 0.02); more likely with Medicaid (AOR = 2.02, P = 0.004), 30-day prior admission (AOR = 2.42, P < 0.0001), and Black/African American race (AOR = 1.57, P = 0.02). Future days hospitalized was greater with Medicaid (Coefficient = 4.49, P = 0.001), 30-day prior admission (Coefficient = 2.08, P = 0.02), and Black/African American race (Coefficient = 2.16, P = 0.01). Any future hospitalization cost was less likely among patients ages 65-74 and 75+ (AOR = 0.54, P = 0.02; AOR = 0.53, P = 0.02); more likely with Medicaid (AOR = 1.67, P = 0.01), 30-day prior admission (AOR = 1.81, P = 0.0001), and Black/African American race (AOR = 1.40, P = 0.02). Total future hospitalization costs were lower for females (Coefficient = −3616.64, P = 0.03); greater with Medicaid (Coefficient = 7388.43, P = 0.01), 30-day prior admission (Coefficient = 3868.07, P = 0.04), and Black/African American race (Coefficient = 3856.90, P = 0.04). Do-not-resuscitate documentation (48%) differed by race.Conclusions:Among PCC patients, Black/African American race and social determinants of health were risk factors for future hospitalization utilization and costs. Medicaid use predicted hospice discharge. Social support interventions are needed to reduce future hospitalization disparities.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-28T09:26:27Z
      DOI: 10.1177/10499091211034383
       
  • Developing the Future End-of-Life Health Care Workforce: Lessons Learned
           From a Survey of Advanced Health Professions Students

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      Authors: Nathan A. Boucher, Emma Dries, Anita Franzione, Allison M. Burton-Chase, Deborah Morris, Jessica Sautter
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:To examine health professions trainees’ end-of-life (EOL) care knowledge, attitudes, and intentions.Methods:IRB-approved online survey of 346 students/5 universities in final training years—public health, pharmacy, physician, physician assistant, occupational therapy, and physical therapy (April-May 2016). Queried knowledge, attitudes, and intentions toward EOL care.Results:Sufficient knowledge of palliative care was reported by 25% while sufficient knowledge of advance care planning (ACP) was 17%. Ninety-six percent thought it important to discuss EOL issues in training; 92% believed their professions played important roles in EOL care. Managing pain was chosen as the best example of palliative care by 93.6% and designating healthcare proxies was reported as the best example of ACP (5.8%). Pharmacy, public health, and rehabilitation therapy students were less likely than physician and physician assistant trainees to report intent to work in EOL care. Among those who want to work in EOL care, 65% reported having clinical experience with seriously ill or dying patients/clients. We discuss other findings related to perceptions of didactic preparation in palliative care, palliative care knowledge access/function, death/dying attitudes, and intentions toward seriously illness care.Discussion:There is interest in and knowledge of palliative care, including EOL care, among multiple health professions. Provides guidance for how we train health professionals to improve population health by optimizing EOL care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-28T09:25:39Z
      DOI: 10.1177/10499091211035711
       
  • Profile, Treatment, and Survival of Palliative Cancer Patients in a Middle
           Income Country’s Cancer Center

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      Authors: Silvia Rosa Allende-Perez, Adriana Peña-Nieves, Miguel Ángel Herrera Gómez, Estefania de la Paz Nicolau, Emma Verástegui-Avilés
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Data describing the characteristics, treatment, and survival of oncological patients referred to PCS remains scarce. Aim: To establish the characteristics of oncological patients referred to PCS, including their profile, treatment, and survival within a 7-year period.Design:Retrospective review of medical records. Clinical variables such as treatment and dates were included. Ji2 or Wilcoxon tests were used accordingly; Kaplan-Meier and log rank test were used to estimate survival.Setting/Participants:Consecutive oncological patients diagnosed between 2012 and 2018 sent to PCS were included.Results:We studied 5,631 patients, 58% female and 59% at advanced stage. Median age was 59 years, with 6 years or less of formal education and low monthly income ($152.4 USD). Neoplasms included breast (12%), stomach (12%), colorectal (10%) and cervical cancer (9%). Median referral time was 5.1 months; pain was the main reason for referral. Morphine was the most prescribed opioid with 47%. Median overall survival was 3.1 months.Conclusions:Morphine remains the paradigm of treatment making necessary to emphasize information on its optimal use. Additional measures such as education for cancer prevention and early referral to PCS are vital to improve survival and quality of life.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-27T10:05:56Z
      DOI: 10.1177/10499091211034772
       
  • Primary and Specialist-Level Palliative Care during the spring 2020
           COVID-19 Surge: A Single-Center Experience in the Bronx

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      Authors: Kaleena Zhang, Marc Shi, Tia Powell, Elizabeth Chuang
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:The COVID-19 pandemic surge necessitated a rapid increase in provision of goals of care communication for patients with respiratory failure and high risk of death. We aimed to describe the outcomes and incidence of code status changes for mechanically ventilated patients in an acute care hospital after deploying strategies to enhance primary palliative care, including provision of goals of care communication scripts to front-line physicians.Methods:This is a retrospective cohort study including all patients admitted with COVID-19 disease and requiring mechanical ventilation during a 2-week period in March and April of 2020.Results:Of the 440 total patients, 327 (74.3%) died. 162 patients received a documented attempt at cardiopulmonary resuscitation (CPR) and only 4 (2.5%) of them survived. No patient above the age of 64 survived a CPR attempt. On admission, 404 patients (92.8%) were Full Code. 165 patients (37.5%) had a code status change. Almost half of the patients (n = 219) had a palliative care consult. Patients with a palliative care consult were more likely to have a code status change (56.6% v. 18.6%, χ2 = 68.0, p < 0.01).Discussion:Mechanically ventilated patients had a high mortality, and CPR did not result in survival to discharge in patients over 65. Palliative care specialists are needed to guide goals of care discussions during the COVID-19 pandemic, as there are numerous barriers to equipping primary care teams to lead such discussions. The COVID-19 pandemic has underscored the vital role of palliative care in disaster response.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-27T09:49:08Z
      DOI: 10.1177/10499091211034416
       
  • A Retrospective Examination of Home PCA Use and Parental Satisfaction With
           Pediatric Palliative Care Patients

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      Authors: Daniel H. Grossoehme, Miraides Brown, Gwendolyn Richner, Sarah M. Zhou, Sarah Friebert
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain.Methods:A chart review was performed of patients prescribed home PCA. Surveys were sent to patients’ guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns.Results:Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child’s pain management and level of alertness.Conclusion:Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-23T09:01:56Z
      DOI: 10.1177/10499091211034421
       
  • Disparities in Palliative Care Utilization Among Hospitalized People With
           Huntington Disease: A National Cross-Sectional Study

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      Authors: Leonard L. Sokol, Danny Bega, Chen Yeh, Benzi M. Kluger, Hillary D. Lum
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:People with Huntington’s disease (HD) often become institutionalized and more frequently die away from the home setting. The reasons behind differences in end-of-life care are poorly understood. Less than 5% of people with HD report utilization of palliative care (PC) or hospice services, regardless of the lack of curative therapies for this neurodegenerative disease. It is unknown what factors are associated with in-patient specialty PC consultation in this population and how PC might be related to discharge disposition.Objectives:To determine what HD-specific (e.g., psychosis) and serious illness-specific factors (e.g., resuscitation preferences) are associated with PC encounters in people with HD and explore how PC encounters are associated with discharge disposition.Design:We analyzed factors associated with PC consultation for people with HD using discharge data from the National Inpatient Sample and the Nationwide Inpatient Sample (NIS), Healthcare Cost and Utilization Project (HCUP), Agency for Healthcare Research and Quality. An anonymized, cross-sectional, and stratified sample of 20% of United States hospitalizations from 2007 through 2014 were included using ICD-9 codes.Results:8521 patients with HD were admitted to the hospital. Of those, 321 (3.8%) received specialty PC. Payer type, (specifically private insurer or other insurer as compared to Medicare), income, (specifically the top quartile as compared to the bottom quartile), mortality risk, D.N.R., aspiration pneumonia, and depression were significantly associated with PC in a multivariate model. Among those who received PC, the odds ratio (OR) of discharge to a facility was 0.43 (95% CI, 0.32-0.58), whereas the OR of discharge to home with services was 2.25 (95% CI 1.57-3.23), even after adjusting for possible confounders.Conclusions:Among patients with HD, economic factors, depression, and serious illness-specific factors were associated with PC, and PC was associated with discharge disposition. These findings have implications for the adaptation of inpatient PC models to meet the needs of persons with HD.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-22T09:28:11Z
      DOI: 10.1177/10499091211034419
       
  • Prolonged Grief and Bereavement Supports Within a Caregiver Population Who
           Transition Through a Palliative Care Program in British Columbia, Canada

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      Authors: Elizabeth X. Wu, Andrew Collins, Shelley Briggs, Kelli I. Stajduhar, Asha Kalsi, Neil Hilliard
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:To determine the prevalence of prolonged grief disorder (PGD), and self-reported resilience among bereaved caregivers within a palliative care program that serves a large region of the Lower Mainland in British Columbia, Canada. Additionally, to discern effective bereavement supports utilized by caregivers following the loss of a loved one.Methods:A descriptive study using both quantitative and qualitative methods. Sociodemographic information (n = 427) was collected from bereaved caregivers 3 months after their loss. PGD and resilience were prospectively assessed 12 months post-loss using the prolonged grief scale (PG-13, n = 212) and brief resilience scale (BRS, n = 215), respectively. A qualitative thematic analysis was conducted on responses to the open-ended question on what bereavement services or activities caregivers found helpful in coping with the loss of a loved one.Results:Of the 212 individuals that completed the PG-13, 4.7% met diagnostic criteria for PGD, 27.4% were moderate risk, and 67.9% were low risk for PGD. Of the 215 caregivers that completed the BRS, 48.4% had low resilience, 51.6% had normal resilience, and 0% had high resilience. The major themes of formal supports, informal supports, and self-care activities emerged from caregiver comments regarding effective bereavement supports.Conclusion:The incidence of PGD in caregivers is low within the Fraser Health Palliative Care program. Bereaved caregivers mainly utilize existing social networks and activities to cope with their loss. Focusing on a community-based approach to supports may improve bereavement experiences and lower rates of prolonged grief.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-14T09:11:44Z
      DOI: 10.1177/10499091211030442
       
  • Predictive Factors for the Development of Dyspnea Within 7 Days After
           Admission Among Terminally Ill Cancer Patients

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      Authors: Ryo Matsunuma, Takashi Yamaguchi, Masanori Mori, Tomoo Ikari, Kozue Suzuki, Yoshinobu Matsuda, Yoshihisa Matsumoto, Hiroaki Watanabe, Koji Amano, Rena Kamura, Yoshiyuki Kizawa
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Predictive factors for the development of dyspnea have not been reported among terminally ill cancer patients.Objective:This current study aimed to identify the predictive factors attributed to the development of dyspnea within 7 days after admission among patients with cancer.Methods:This was a secondary analysis of a multicenter prospective observational study on the dying process among patients admitted in inpatient hospices/palliative care units. Patients were divided into 2 groups: those who developed dyspnea (development group) and those who did not (non-development group). To determine independent predictive factors, univariate and multivariate analyses using the logistic regression model were performed.Results:From January 2017 to December 2017, 1159 patients were included in this analysis. Univariate analysis showed that male participants, those with primary lung cancer, ascites, and Karnofsky Performance Status score (KPS) of ≤40, smokers, and benzodiazepine users were significantly higher in the development group. Multivariate analysis revealed that primary lung cancer (odds ratio [OR]: 2.80, 95% confidence interval [95% CI]: 1.47-5.31; p = 0.002), KPS score (≤40) (OR: 1.84, 95% CI: 1.02-3.31; p = 0.044), and presence of ascites (OR: 2.34, 95% CI: 1.36-4.02; p = 0.002) were independent predictive factors for the development of dyspnea.Conclusions:Lung cancer, poor performance status, and ascites may be predictive factors for the development of dyspnea among terminally ill cancer patients. However, further studies should be performed to validate these findings.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-08T09:13:56Z
      DOI: 10.1177/10499091211028817
       
  • Implementation of a Surgical Intensivist Model Increases Palliative Care
           Consultation in the Care of Trauma ICU Patients

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      Authors: Kevin D. Kirkland, Chloe Chabanon-Hicks, Elizabeth Acquista
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:This study investigated patient outcomes of care before and after transitioning to a surgical intensivist-led trauma-intensive care unit (ICU) team. The intensivist team provided daily multidisciplinary rounds and continuity of care. Prior to an intensivist model, general surgeons cared for trauma patients admitted to the unit.Methods:Outcomes of 1,078 trauma patients, admitted to the ICU at a Level II trauma center, under care of general surgeons (1/2011-8/2012, n = 449) were retrospectively compared with care managed by a surgical intensivist team (1/2013-5/2015, n = 629) by Pearson Chi-squared and Wilcoxon tests. A multivariable logistic regression technique was used to control for covariates. Demographics and injury severity were analyzed. The primary outcome was ICU mortality. The secondary outcomes were length of stay (LOS), ventilator-free and ICU-free days, and ICU readmission rate. Other data collected included palliative care consultation. Results: There were no statistically significant differences in ICU mortality (P = 0.055), hospital LOS (P = 0.481), ventilator-free days (P = 0.174), or ICU readmission rate (P = 0.587). The surgical intensivist team consulted palliative care more frequently (4.0% vs 13.5%, P < 0.001), while managing more trauma patients who were older than 65 years (P < 0.001) with lower Glasgow Coma Scale (P = 0.048) and higher injury severity (P = 0.025) and abbreviated injury scale (P < 0.001) scores.Discussion:There were no differences in outcomes. However, incorporating palliative care consultation in the ICU is essential in the support of critically ill patients and their families. These data demonstrate that a surgical intensivist team utilized palliative care more often in the management of trauma patients admitted to the ICU.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-08T09:12:55Z
      DOI: 10.1177/10499091211025733
       
  • Patterns of End-of-Life Care as Measured by Emergency Room Visits Among
           Cancer Patients in Puerto Rico

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      Authors: María R. Ramos-Fernández, Karen J. Ortiz-Ortiz, Carlos R. Torres-Cintrón, Guillermo Tortolero-Luna
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Community palliative care (PC) services are scarce in Puerto Rico (PR). Patients with advanced cancer commonly visit the emergency department(ED) at the end of life (EoL). Recognition of patients with limited life expectancies and PC needs may improve the EoL trajectory of these patients. Our objective was to characterize ED visits of cancer patients at the EoL by examining the patterns of ED visits in PR using the PR Central Cancer Registry-Health Insurance Linkage Database (PRCCR-HILD).Methods:The cohort consisted of patients aged ≥18 years with a primary invasive that died between 2011- 2017, with a recorded date of death, and who had insurance claims during their last three months. EoL indicators were ED visits, ED death, and hospice care use.Results:The study cohort included 10,755 cancer patients. 49.6% had ≥1 ED visit, 20.3% had ≥2 ED visits, and 9.7% died in the ED. In the adjusted model, female patients (aOR 0.80; 95% CI 0.68-0.93; p-value < 0.01), patients aged ≥80 years (aOR 0.47; 95% CI 0.36-0.63; p-value < 0.01), being enrolled in Medicare (aOR 0.74; 95% CI 0.61-0.90; p-value < 0.01) or being enrolled in Medicaid/Medicare (aOR 0.76; 95% CI 0.62-0.93; p-value = 0.01) were less likely to have an ED visit the date of death. Patients with distant stage are more likely to have ED ≥ 2visits (p-value < 0.05). Conclusions: ED visits at EoL can be interpreted as poor quality cancer care and awareness of the potential of ED-initiated PC is needed in PR.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-07T09:17:01Z
      DOI: 10.1177/10499091211025743
       
  • Baseline Knowledge Attitudes Satisfaction and Aspirations With Advance
           Care Planning: A Cross-Sectional Study

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      Authors: Jojo Yorke, Emmanuel Yobo-Addo, Kanwardeep Singh, Ali Muzzam, Imran Khan, Nikita Shokur, David Ginn, James W Myers
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Studies have consistently demonstrated low rates of adoption of Advance Care Planning in the community.Methods:We studied Medicare enrollees age 65 and over and non-Medicare patients using a cross-sectional survey undertaken in February and March 2019 using questionnaires completed by out-patients attending a teaching hospital clinic in East Tennessee USA. We evaluated patient knowledge, attitudes, satisfaction and aspirations towards Advance Care Planning.Results:141 properly completed questionnaires were used. All Medicare enrollees were aware of Advanced Care Planning compared to 43% in the non-Medicare group. 70% of the Medicare enrollees and 94% of non-Medicare group were not ready to complete a written Advanced Care Plan. Of the respondents, 46% had appointed spouses, 24% adult children, 11% siblings, 10% parents, 3.6% friends and 1.2% aunts as their surrogate medical decision makers. 41% agreed that they were satisfied with their current advance care planning arrangements. This research identified that individual’s knowledge, attitudes and aspirations influenced the adoption of Advance Care.Conclusions:Patients have adopted the Advance Care Plan concept but have modified it to reduce their concerns by using family and loved ones to convey their wishes instead of filling the required legal documents. Clinicians could improve this informal system and increase the observability of the treatment choices including the use of video and web-based tools.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-06T09:11:15Z
      DOI: 10.1177/10499091211030447
       
  • Impact of legalization of Medical Assistance in Dying on the Use of
           Palliative Sedation in a Tertiary Care Hospital: A Retrospective Chart
           Review

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      Authors: Amy Nolen, Rawaa Olwi, Selby Debbie
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Patients approaching end of life may experience intractable symptoms managed with palliative sedation. The legalization of Medical Assistance in Dying (MAiD) in Canada in 2016 offers a new option for relief of intolerable suffering, and there is limited evidence examining how the use of palliative sedation has evolved with the introduction of MAiD.Objectives:To compare rates of palliative sedation at a tertiary care hospital before and after the legalization of MAiD.Methods:This study is a retrospective chart analysis of all deaths of patients followed by the palliative care consult team in acute care, or admitted to the palliative care unit. We compared the use of palliative sedation during 1-year periods before and after the legalization of MAiD, and screened charts for MAiD requests during the second time period.Results:4.7% (n = 25) of patients who died in the palliative care unit pre-legalization of MAiD received palliative sedation compared to 14.6% (n = 82) post-MAiD, with no change in acute care. Post-MAiD, 4.1% of deaths were medically-assisted deaths in the palliative care unit (n = 23) and acute care (n = 14). For patients who requested MAiD but instead received palliative sedation, the primary reason was loss of decisional capacity to consent for MAiD.Conclusion:We believe that the mainstream presence of MAiD has resulted in an increased recognition of MAiD and palliative sedation as distinct entities, and rates of palliative sedation increased post-MAiD due to greater awareness about patient choice and increased comfort with end-of-life options.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-06T09:10:34Z
      DOI: 10.1177/10499091211030443
       
  • The Corpse: Time for Another Look A Review of the Culture of Embalming,
           Viewing and the Social Construction

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      Authors: Redmond Finney, Lisa M. Shulman, Raya E. Kheirbek
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Embalming of the dead is more common in the United States than anywhere else in the world. Battles far from home during the Civil War with concern for contagion from dead bodies being shipped home compelled President Lincoln to direct the troops to use embalming to allow the return of the Union dead to their homes. Viewings were common with war heroes and culminated with the viewing of Lincoln himself. In the 20th century embalming became a tradition despite substantial evidence indicating environmental and occupational hazards related to embalming fluids and carbon dioxide generated from manufacturing steel coffins before placing in concrete burial vaults. Embalming is promoted and considered helpful to the grieving process. Embalmers are expected to produce an illusion of rest, an image that in some ways disguises death for the benefit of mourners. The dead are carefully displayed in a condition of liminal repose where the ‘true’ condition is hidden, and death is removed from the actual event. In this paper we highlight the spiritual and cultural complexities of embalming related issues. We propose an innovative process to empower people facing serious illness, and their families to make shared and informed decisions, especially when death is an expected outcome.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-05T09:17:31Z
      DOI: 10.1177/10499091211025757
       
  • Seeking Excellence in End of Life Care (SEE Care): A Multi-Centered Acute
           Hospitals Service Evaluation

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      Authors: Simon Tavabie, Anja Berglund, David Barclay, Steve Bass, Naomi Collins, Elaine Edwards, Farida Malik, Ollie Minton, Deborah Peters, Eleanor Stewart, Jayne Winter, Suzanne Ford-Dunn
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:A proportion of UK hospital inpatients have palliative care needs but do not access specialist services.Objectives:To contemporaneously evaluate the significance of unmet specialist palliative care needs within the hospital inpatient population.Methods:Prospective multi-centered service evaluation was conducted through 4 snapshots across 4 acute NHS hospital trusts. All patients identified as dying in each hospital were included. Data extraction included symptom burden, medications and completion of care plans.Results:End-of-life care plans were completed for 73%, symptom-focused prescribing present in 96%. Symptoms were not well managed for 22%, with 4% suffering moderate to severely. Specific intervention was triggered in 56% of patients, consisting of prescribing advice and holistic support.Conclusion:There are significant unmet specialist palliative care needs within the hospital inpatient population. Contemporaneous data collection coupled with an outreach approach helps palliative care services better understand the experiences of dying people, alongside where improvement is needed.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-01T09:09:14Z
      DOI: 10.1177/10499091211027815
       
  • Utility of Palliative Prognostic Index in Predicting Survival Outcomes in
           Patients With Hematological Malignancies in the Acute Ward Setting

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      Authors: Shu-Hui Lee, Wen-Chi Chou, Hsin-Yi Yang, Chia-Chia Chen, Hung Chang, Po-Nan Wang, Ming-Chung Kuo, Yu-Feng Kao, Lun-Hui Ho, Shun-Wen Hsueh, Chen-Yi Kao, William Harrison Hsueh, Chia-Yen Hung, Yu-Shin Hung
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The palliative prognostic index (PPI) predicts the life expectancy of patients with terminally ill cancer in hospice settings. This study aimed to evaluate PPI as a prognostic tool for predicting the life expectancy of patients with hematological malignancies admitted to the acute ward.Methods:A total of 308 patients with hematological malignancies admitted to the hematological ward at a medical center between January 2016 and December 2017 were consecutively enrolled. PPI was scored within 24 h of admission. All patients were categorized into 3 groups by PPI for comparing survival and in-hospital mortality rates.Results:The median survival times were 38.4, 3.6, and 1.1 months for patients with good, intermediate, and poor prognostic group, respectively. The hazard ratio was 2.31 (95% CI 1.59-3.35, p < 0.001) when comparing the intermediate and good prognosis groups, and 3.90 (95% CI 2.52-6.03, p < 0.001) when comparing the poor and good prognosis groups. Forty-five (14.6%) patients died at discharge; in-hospital mortality rates among the good, intermediate, and poor prognostic groups were 9.0%, 23.4%, and 46.4%, respectively. The adjusted odds ratio for in-hospital mortality was 1.96 (95% CI, 0.80-4.82, p = 0.14) and 5.25 (95% CI, 2.01-13.7, p < 0.001) for patients in the intermediate and poor prognostic groups compared to those in the good prognostic group.Conclusion:PPI is an accurate prognostic tool for predicting survival times and in-hospital mortality rates in patients with hematological malignancies in an acute ward setting. PPI could assist clinicians in discussing end-of-life issues and in referring patients with hematological malignancies to palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-01T09:08:13Z
      DOI: 10.1177/10499091211028820
       
  • As the Pandemic Recedes, Will Moral Distress Continue to Surge'

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      Authors: Elizabeth K. Vig
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Palliative care practitioners have encountered morally distressing situations during the COVID-19 pandemic, and have supported their colleagues experiencing moral distress. Familiarity with the concept of moral distress and with COVID-specific causes of moral distress may help palliative care practitioners recognize moral distress in themselves and in their colleagues. This essay provides a brief review of the concept of moral distress, a list of potential COVID-19 specific causes of moral distress, and a list of organizational, team, and individual interventions to promote resilience.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-07-01T08:53:50Z
      DOI: 10.1177/10499091211030456
       
  • Health Professionals’ Perspectives of the Role of Palliative Care During
           COVID-19: Content Analysis of Articles and Blogs Posted on Twitter

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      Authors: Gursharan K. Singh, Joanna Rego, Shirley Chambers, Jennifer Fox
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objective:The COVID-19 pandemic has resulted in health professionals facing unprecedented challenges and changes in practice. Responding to humanitarian crises involves saving lives and reducing suffering and as such, palliative care is an essential component of the response to COVID-19. This study aimed to explore health professionals’ perspectives of the role of palliative care during the COVID-19 pandemic by analyzing their views and experiences expressed in articles and blogs located via Twitter.Method:Qualitative content analysis of 33 online articles and blogs written by health professionals from 1 February 2020 to 30 June 2020. Online articles and blogs were included if the URL was posted on Twitter. The consolidated criteria for reporting qualitative research (COREQ) guided data collection and reporting.Results:The health professionals whose viewpoints were analyzed were from Europe, North America, Oceania and Asia. The themes derived from content analysis were (a) the recognized value of palliative care during the pandemic, (b) positioning palliative care as every health professional’s responsibility and (c) specialist palliative care supporting and guiding health professionalsConclusions:This study utilizes a unique approach to exploring the perspectives of health professionals from several countries during a global pandemic. The study emphasizes the value of palliative care and identifies gaps in end-of-life care provision including resource allocation. This brings to light the urgent need to equip all health professionals with palliative care knowledge and skills, including discussing and planning care. Specialist palliative care teams are well placed to support health professionals to provide quality care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-30T09:17:37Z
      DOI: 10.1177/10499091211024202
       
  • Covid-19 Mortality in an Acute Care Hospital: Association of Patient
           Factors With Decision to Forego the Intensive Care Unit

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      Authors: Barry R. Meisenberg, Sadaf Qureshi, Monika Thandalam Somasekar, Qurat Ali, Mitchell Karpman, Jane Rhule
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Public awareness of the large mortality toll of COVID-19 particularly among elderly and frail persons is high. This public awareness represents an enhanced opportunity for early and urgent goals-of-care discussions to reduce medically ineffective care.Objective:To assess the end-of-life experiences of hospitalized patients dying of COVID-19 with respect to identifying the clinical factors associated with utilization or non-utilization of the ICU.Methods:Retrospective cohort study of hospital outcomes using electronic medical records and individual chart review from March 15, 2020 to October 15, 2020 of every patient with a COVID-19 diagnosis who died or was admitted to hospice while hospitalized. Logistic regression multivariate analysis was used to identify the clinical and demographic factors associated with non-utilization of the ICU.Results:133/749 (18%) of hospitalized COVID-19 patients died or were admitted to hospice as a result of COVID-19. Of the 133, 66 (49.6%) had no ICU utilization. In multivariate analysis, the significant patient factors associated with non-ICU utilization were increasing age, normal body mass index, and the presence of an advanced directive calling for limited life sustaining therapies. Race and residence at time of admission (home vs. facility) were significant only in the unadjusted analyses but not in adjusted. Gender was not significant in either form of analyses.Conclusion:Goals of care discussions performed by an augmented palliative care team and other bedside clinicians had renewed urgency during COVID-19. Large percentages of patients and surrogates, perhaps motivated by public awareness of poor outcomes, opted not to utilize the ICU.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-29T09:29:33Z
      DOI: 10.1177/10499091211028849
       
  • Evaluation of Antibiotic Initiation Tools in End-of-Life Care

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      Authors: Matthew D. Clark, Zachery Halford, Chris Herndon, Ellen Middendorf
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Hospice patients are frequently confronted with potentially infectious complications necessitating antibiotic consideration. Information regarding the appropriate use of antibiotics and their impact on symptom management in hospice patients are unknown.Objectives:This study aimed to evaluate and describe the use of an antibiotic initiation tool in patients admitted to outpatient hospice services. The primary outcome assessed the percentage of antibiotics that were appropriately initiated based on Loeb’s Minimum Criteria (LMC) for Antibiotic Initiation Tool. Secondary outcomes included the number of patients with documented symptom resolution following antibiotic completion, the number of antibiotic courses that were successfully completed, and treatment-related adverse events.Methods:This was a retrospective, multisite, descriptive analysis of hospice patients treated with antibiotics between April 2019 and September 2020.Results:Two hundred and thirty patients were assessed for inclusion, with 172 meeting eligibility criteria and receiving a total of 201 antibiotic courses. Based on LMC, 84 of the 201 (42%) antibiotics ordered were appropriate, with 60% of these LMC-approved courses resulting in symptom resolution. Out of 201 total courses, 99 (49%) resulted in symptom resolution. Overall, 160 (80%) antibiotic courses were successfully completed.Conclusion:In this study, antibiotic initiation in hospice patients frequently did not meet LMC. Less than half of the antibiotics prescribed led to symptom resolution despite antibiotic course completion in most patients. There is no consensus or guidelines directing appropriate antibiotic decision-making in hospice patients. The appropriate use of antibiotics in terminally ill patients warrants additional research.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-25T09:12:21Z
      DOI: 10.1177/10499091211027806
       
  • What Surrogates Understand (and Don’t Understand) About Patients’
           Wishes After Engaging Advance Care Planning: A Qualitative Analysis

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      Authors: David B. Simmons, Benjamin H. Levi, Michael J. Green, In Seo La, Daniella Lipnick, Theresa J. Smith, Elizabeth R. Thiede, Debra L. Wiegand, Lauren Van Scoy
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions.Aim:To explore how ACP did or did not contribute to a spokespersons’ understanding of patient wishes after engaging in ACP.Design:Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid.Setting/Participants:200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP.Results:ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients’ wishes, and 3) complicated emotions impacting end-of-life discussions.Conclusions:Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-24T09:08:14Z
      DOI: 10.1177/10499091211026674
       
  • Evaluation of a Quality Improvement Intervention to Improve Pediatric
           Palliative Care Consultation Processes

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      Authors: Jennifer Forsman Stoyell, Megan Jordan, Anne Derouin, Julie Thompson, Sarah Gall, Karen R. Jooste, Vahakn Shant Keskinyan, Kristen Register Lakis, Yu-Lin Amy Lee, Sharron Docherty
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments of other physical symptoms and psychosocial, emotional, or spiritual needs.Aims:To improve the breadth of assessment of psychosocial and emotional needs, screen for symptoms other than pain among pediatric patients utilizing palliative care services, and to increase documentation of assessment data from 30%-40% to 80% through practice changes implemented in 2 Plan-Do-Study-Act (PDSA) cycles.Methods:This quality improvement project involved implementing provider education and adapting the palliative care consultation template in the electronic health record to improve breadth and consistency of assessment and documentation during consultations by the interdisciplinary pediatric palliative care team. Two PDSA cycles were performed. Chi squared tests and statistical control charts were used for data analysis.Results:There was statistically significant improvement in the inclusion of documentation of a pediatric palliative care social work note from baseline (32%) to Cycle 2 (57%). Physical symptom screening declined slightly, but not significantly (p = .32) and socio-emotional discussions also declined but not significantly (p = .05).Conclusions:Screening for physical symptoms and discussions with patients and families about psychosocial/emotional needs during the initial palliative care consultations are extremely important in providing effective, holistic, patient-centered care. There is a need for development of pediatric-centric guidelines and quality measures to evaluate pediatric palliative care programs; further research is indicated to determine methods for evaluating compliance with these guidelines.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-23T10:56:10Z
      DOI: 10.1177/10499091211026675
       
  • Sharing COMFORT Communication Training With Healthcare Professionals in
           Nairobi, Kenya: A Pilot Webinar Series

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      Authors: Elaine Wittenberg, Regina Ogechi Alabere, Emeline Beltran, Joy V. Goldsmith, Shabnam Moledina
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Communication training for healthcare providers is evident in the context of the COVID-19 global pandemic, however training opportunities are not available in countries with limited resources.Objectives:To investigate perceived comfort in communication about end-of-life and palliative care among healthcare providers in Nairobi, Kenya and to evaluate a pilot webinar-based communication training series.Methods:Through a partnership with a research hospital in Nairobi, healthcare providers engaged an online survey to assess perceived comfort in communication and prior educational training in communication. The COMFORT communication model was used to develop and pilot a webinar-based communication training series to meet training needs. Pre-post measures of comfort in communication and post-curriculum evaluation were used to evaluate the webinars.Results:Survey findings from 94 healthcare providers demonstrated that communication training is most needed when patient/family culture is different from provider. Physicians reported less comfort in communication than nurses and other professionals, especially in communication with family about spiritual or religious concerns. Nurses reported more overall training in palliative care communication topics than physicians and other disciplines. The 3-part webinar series increased communication comfort for physicians and nurses, was highly rated, and participants reported that they would recommend COMFORT webinar training to colleagues.Conclusion:Webinar-based platforms for communication training show promise for meeting communication training needs of healthcare providers.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-23T10:55:33Z
      DOI: 10.1177/10499091211026673
       
  • Demoralization in End-of-Life Cancer Patients’ Family Caregivers: A
           Cross-Sectional Study

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      Authors: Andrea Bovero, Ludovica Panzini Vitiello, Rossana Botto, Francesco Gottardo, Alessandra Cito, Giuliano Carlo Geminiani
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:The aims of this study were to evaluate the prevalence of demoralization in a sample of end-of-life cancer patients’ family caregivers and investigate the association between demoralization and different factors, such as distress, hope, quality of life, and caregiver burden.Methods:The study used a cross-sectional design and 142 participants were sampled. Family caregivers were included if they were caring for a cancer patient in palliative care with a limited life expectancy.Socio-demographic data were gathered, and Italian versions of the following scales were administered: Demoralization Scale (DS), Herth Hope Index (HHI), Caregiver Reaction Assessment (CRA), Short Form-36 Health Survey (SF-36), and Distress Thermometer (DT).Results:The average total demoralization score was 29.04 (SD = 13.62). 19.50% of caregivers was the low scorers at DS (0-25th percentile), 27.50% was the middle scorers (25th-75th percentile), and 39.00% was the high scorers (75th-100 percentile). 19.50% of the caregivers showed mild demoralization, 27.50% moderate demoralization, and 39.00% showed severe demoralization. Strong Moderate correlations were found between the total DS score and the Temporality and Future HHI subscale (ρ = .520); the HHI total score (ρ = .528); the Social functioning (ρ = .536) and Mental health (ρ = .675) SF-36 subscales. The HHI total score and the Mental health SF-36 subscale emerged as the main predictors of demoralization.Conclusions:The results show that not only end-of-life patients but also family caregivers may experience demoralization. This demoralization seems to be more associated to spiritual and psychological suffering rather than difficulties relating to caregivers’ personal time, social roles, physical states, and financial resources.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-15T09:21:50Z
      DOI: 10.1177/10499091211023482
       
  • The Hands of Time

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      Authors: Ariane Lewis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      When making decisions about goals-of-care for a patient who lacks decision-making capacity, surrogates sometimes have internal disagreements, particularly if there are complicated family dynamics. Here, I describe the evolution of end-of-life discussions for a patient who had a catastrophic stroke amongst a family who had preexisting discord.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-10T09:39:21Z
      DOI: 10.1177/10499091211024222
       
  • An Interprofessional Approach to Advance Care Planning

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      Authors: Jung Kwak, Aleena Jamal, Barbara Jones, Gayle M. Timmerman, Brian Hughes, Liam Fry
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Context:Advance care planning (ACP) can improve patients’ outcomes at end of life, and interprofessional collaboration has been recommended to facilitate ACP. However, role confusion in ACP facilitation among team members from different disciplines exists, and health professional disciplines’ expectations for interprofessional collaboration in ACP are unclear.Objective:To review expectations of major health professional organizations for ACP competencies, in order to identify gaps and opportunities for promoting interprofessional collaboration in ACP facilitation.Methods:Guidelines and recommendations for ACP across disciplines including chaplaincy, medicine, nursing, psychology, and social work were identified and analyzed using content analysis. Main themes were then reviewed against national consensus statements on 4 ACP outcomes (process outcomes, action outcomes, quality of care outcomes, and healthcare outcomes) and mapped into existing domains for interprofessional education competency: values/ethics, roles/responsibilities, interprofessional communication, and teams and teamwork.Results:Three major content themes were identified: professional commitment to advocating for patients’ values and self-determination, professional responsibility to facilitate ACP, and specific tasks in ACP. These themes addressed mostly process and action outcomes of ACP but not quality of care outcomes or healthcare outcomes. Few disciplines included interprofessional collaboration as part of ACP competency.Conclusion:There is a need for standardized competency guidelines for interprofessional collaboration in ACP as an important first step in reducing confusion among roles and other challenges in facilitating ACP. Further efforts in practice, research, and policy are needed to facilitate interprofessional ACP, achieve competencies, and improve patients’ outcomes.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-07T09:20:43Z
      DOI: 10.1177/10499091211019316
       
  • Trends and Predictors of Palliative Care Consultation Among Patients
           Admitted for LVAD: A Retrospective Analysis From the Nationwide Inpatient
           Sample Database From 2006-2014

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      Authors: Karol Quelal, Olankami Olagoke, Anoj Shahi, Andrea Torres, Olisa Ezegwu, Yasmeen Golzar
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Left ventricular assist devices (LVADs) are an essential part of advanced heart failure (HF) management, either as a bridge to transplantation or destination therapy. Patients with advanced HF have a poor prognosis and may benefit from palliative care consultation (PCC). However, there is scarce data regarding the trends and predictors of PCC among patients undergoing LVAD implantation.Aim:This study aims to assess the incidence, trends, and predictors of PCC in LVAD recipients using the United States Nationwide Inpatient Sample (NIS) database from 2006 until 2014.Methods:We conducted a weighted analysis on LVAD recipients during their index hospitalization. We compared those who had PCC with those who did not. We examined the trend in palliative care utilization and calculated adjusted odds ratios (aOR) to identify demographic, social, and hospital characteristics associated with PCC using multivariable logistic regression analysis.Results:We identified 20,675 admissions who had LVAD implantation, and of them 4% had PCC. PCC yearly rate increased from 0.6% to 7.2% (P < 0.001). DNR status (aOR 28.30), female sex (aOR 1.41), metastatic cancer (aOR: 3.53), Midwest location (aOR 1.33), and small-sized hospitals (aOR 2.52) were positive predictors for PCC along with in-hospital complications. Differently, Black (aOR 0.43) and Hispanic patients (aOR 0.25) were less likely to receive PCC.Conclusion:There was an increasing trend for in-hospital PCC referral in LVAD admissions while the overall rate remained low. These findings suggest that integrative models to involve PCC early in advanced HF patients are needed to increase its generalized utilization.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-03T09:09:09Z
      DOI: 10.1177/10499091211021837
       
  • Increasing Awareness of Palliative Medicine With the Emergency Department:
           A Quality Improvement Project

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      Authors: Carolina De Elia, Phyllis Macchio, Wardah Khan, Lindsay Perigini, Alan Kaell, Greg Haggerty
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Palliative medicine can be essential in helping to align patients’ goals of care with their treatment team. Referrals for palliative medicine are more advantageous when initiated in the emergency department as this is the first point of contact for seriously ill patients being admitted to the hospital. This paper highlights a quality improvement project initiated to address knowledge gaps in palliative medicine with emergency department (ED) staff and to increase referrals for palliative medicine from the ED. The palliative medicine staff held an in-service training with the ED staff which focused on defining palliative medicine and the importance of early consults when the patient presents in the ED. Palliative medicine staff also highlighted the differences between palliative medicine and hospice care, when and how to initiate a consult for palliative medicine, as well as how to contact the palliative medicine division. The results showed that after this educational intervention the number of palliative medicine consults increased three-fold. Before the educational intervention, monthly averages for palliative medicine were 6 and after rose to 18.9 per month.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-06-01T09:15:25Z
      DOI: 10.1177/10499091211021838
       
  • Assisting People With Their Living, Not Their Dying: Health
           Professionals’ Perspectives of Palliative Care and Opioids in ILD

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      Authors: Lauren Russo, Karen Willis, Natasha Smallwood
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives.Methods:A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data.Results:Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation.Conclusion:Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-31T09:31:35Z
      DOI: 10.1177/10499091211018664
       
  • The Journey of the Purple Butterfly: A Quality Improvement Initiative

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      Authors: Jessica O’Brien Gufarotti, Anna Krakowski
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Dying in the hospital is not always a good experience for patients and their families. To be more in line with evidence-based practices for healthcare workers to effectively support high quality end of life care, the project team implemented a standardized communication tool to alert interdisciplinary team members of patients on comfort care measures.Methods:Purple Butterfly was a quality improvement project that was implemented at a diverse community hospital in the urban setting. Clinical and non-clinical interdisciplinary team members participated in a pre- and post- implementation survey to assess the need for a standardized communication tool that would alert them of patients who transitioned to comfort care.Results:Pre-implementation, 37% of survey respondents (n = 60) reported they were always aware of the presence of a patient on comfort care measures prior to entering the room. After implementation of a standardized communication tool, 100% (n = 43) of respondents at 9 months, reported that they were always aware of the presence of a patient on comfort care measures prior to entering the room. Additionally, 9 months post-intervention 100% of respondents reported that knowing this contextual information supported them in performing their job duties in a compassionate, patient-centered fashion.Conclusion:Implementation of a standardized communication tool increased awareness for team members, about the presence of patients on comfort care measures prior to entering the room and supported team members to perform their job duties in a compassionate, patient-centered fashion supportive of this patient population.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-31T09:31:28Z
      DOI: 10.1177/10499091211014164
       
  • Preoperative Advance Care Planning for Older Adults Undergoing Major
           Abdominal Surgery

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      Authors: Josh Bleicher, Lauren E. McGuire, Riann B. Robbins, Jordan E. Johnson, Sarah Fischbuch, Sumati Gupta, Anna C. Beck, Jessica N. Cohan
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Advance care planning (ACP) is recommended for older patients undergoing surgery. ACP consists of creating advance directives (ADs), identifying surrogate decision makers (SDMs), and documenting goals of care. We identified factors associated with documentation of preoperative ACP to identify opportunities to optimize ACP for older surgical patients.Methods:This was a retrospective study of surgical patients ≥70 years old who underwent elective, high-risk abdominal procedures between 01/2015-08/2019. Clinical data were obtained from our institution’s National Surgical Quality Improvement Project database. ACP metrics were extracted from the electronic medical record. We analyzed the data to identify patient factors associated with ACP metrics. We also analyzed whether ACP was more frequent for patients who experienced postoperative complications or death.Results:267/1,651 patients were included. 97 patients (36%) had an AD available on the day of surgery, 57 (21%) had an SDM identified, and 31 (12%) had a documented goals of care conversation. On multivariable analysis, older age and white race were associated with an increased likelihood of having an AD available on the day of surgery. Women were 1.7 times more likely to have an SDM (p = 0.02). No patient or surgeon factors were significantly associated with goals of care documentation. ACP was not performed more frequently in patients who experienced postoperative complications or death.Conclusion:In this series, ACP was not routinely documented for older patients undergoing major surgery. ACP was not more frequent in patients who experienced complications or death, demonstrating the importance of universal preoperative ACP in older patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-28T09:06:16Z
      DOI: 10.1177/10499091211020276
       
  • Challenges and Opportunities of Providing Pediatric Funeral Services: A
           National Survey of Funeral Professionals

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      Authors: Kristin James, Betsy Hawley, Carrie R. McCoy, Lisa C. Lindley
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Funeral professionals offer a unique opportunity to support, educate, and advocate for grieving families after the death of a child. From the initial point of contact to the burial, funeral professionals shape the final moments and memories of a family and a community. And yet, little is known about the needs of funeral professionals to provide high quality services when a child dies.Objectives:To conduct a needs assessment among funeral professionals in conducting funeral services for children.Methods:Active National Funeral Directors Association members were surveyed on their experience and needs in providing pediatric funeral services. The survey contained 41 questions about experience, skills, and knowledge in providing pediatric funerals. The survey included multiple choice, yes/no, and open-ended questions. Descriptive statistics were generated from the survey items and comments/open-ended questions were coded and assessed for themes.Results:More than 200 responses were received. The respondents conducted 43 pediatric funeral services in a 5-year period (approx. 8 services/year). The top 5 self-identified training needs included grieving parents, grieving siblings, memorials, comforting the community, and outreach. Themes from the open-ended questions were (a) maintaining professionalism, (b) managing emotions and experiences, (c) assessing family dynamics, (d) managing professional skills, and (e) building collaborative networks.Conclusions:Specific training needs were identified that will inform the development of targeted training for funeral professionals to improve their skills and knowledge of pediatric funeral services.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-26T09:45:24Z
      DOI: 10.1177/10499091211019298
       
  • Patterns of Health Care Services During Pediatric Concurrent Hospice Care:
           A National Study

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      Authors: Lisa C. Lindley, Radion Svynarenko, Kim Mooney-Doyle, Annette Mendola, Wendy C. Naumann, Jessica Keim-Malpass
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.Objectives:To examine the health care services, unique clusters of health care services, and characteristics of the children in the clusters.Methods:Multiple data sources were used including national Medicaid claims data. Children under 21years in pediatric concurrent hospice care were included. Using Medicaid categories assigned to claims, health care services were distributed across 20 categories. Latent class analysis was used to identify clusters of health care services. Demographic profiles of the clusters were created.Results:The 6,243 children in the study generated approximately 500,0000 non-hospice, health care service claims while enrolled in hospice care. We identified 3 unique classes of health care services use: low (61.1%), moderate (18.1%), and high (20.8%) intensity. The children in the 3 classes exhibited unique demographic profiles.Conclusions:Health care services cluster together in unique fashion with distinct patterns among children in concurrent hospice care. The findings suggest that concurrent hospice care is not a 1-size-fit all solution for children. Concurrent hospice care may be customized and require attention to care coordination to ensure high-quality care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-25T09:07:15Z
      DOI: 10.1177/10499091211018661
       
  • Economic Evaluation of Palliative Care Interventions: A Review of the
           Evolution of Methods From 2011 to 2019

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      Authors: Anna Parackal, Karishini Ramamoorthi, Jean-Eric Tarride
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:End-of-life care is a driver of increasing healthcare costs; however, palliative care interventions may significantly reduce these costs. Economic evaluations that measure the incremental cost per quality adjusted life years (QALY) are warranted to inform cost-effectiveness of the intervention relative to a comparator and permit evaluation of investment against other therapeutic interventions. Evidence from the literature up to 2011 indicates a scarcity of cost-utility studies in palliative care research.Aim:This literature review evaluates economic studies published between 2011 and 2019 to determine whether the methods of economic evaluations have evolved since 2011.Design and Data Sources:A literature search was completed using CENTRAL, OVID MEDLINE, EMBASE and other sources for publications between 2011 and 2019. Study characteristics, methodology and key findings of publications that met the inclusion criteria were reviewed. Quality of studies were assessed using indicators developed by authors of the previous literature review.Results:46 papers were included for qualitative synthesis. Among them only 6 studies conducted formal cost-effectiveness evaluations-of these 5 measured QALYs and 1 employed probabilistic analyses. In addition, with the exception of 1 costing analysis, all other economic evaluations undertook a healthcare payer perspective. Quality of evidence were comparable to the previous literature review published in 2011.Conclusion:Despite the small increase in the number of cost-utility studies, the methods of palliative care economic evaluations have not evolved significantly since 2011. More probabilistic cost-utility analyses of palliative care interventions from a societal perspective are necessary to truly evaluate the value for money.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-24T09:00:22Z
      DOI: 10.1177/10499091211011138
       
  • Barriers to Palliative Care Referral and Advance Care Planning (ACP) for
           Patients With COPD: A Cross-Sectional Survey of Palliative Care Nurses

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      Authors: Rebecca Disler, Amy Pascoe, Tim Luckett, Doranne Donesky, Louis Irving, David C. Currow, Natasha Smallwood
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting illness that requires end-of-life care planning, yet remains under-served. Understanding barriers to advance care planning (ACP) from different specialties’ perspectives will enable a co-ordinated, cross-disciplinary approach to improving ACP access.Methods:Australia and New Zealand palliative care nurses were invited to complete an anonymous online cross-sectional survey. Questions tested knowledge of validated ACP-related practice indicators and canvassed perspectives on barriers to ACP in COPD. Data are described and free-text thematically analyzed.Results:The 90 participants had high knowledge and positive attitudes to ACP in COPD, however, lacked consensus as to whether patients want to know their prognosis or discuss treatment options and end-of-life wishes. 59% discussed ACP in more than half their patients with COPD, and 77% and 73% routinely initiated or followed-up these discussions. Key barriers included: lack of confidence and training in COPD; reluctance to distress patients and families; referral late in the disease course; lack of consensus on referral timing; and lack of patient and clinician understanding of COPD prognoses. Many reported that lack of consensus in the treating team, paired with prognostic uncertainty, precluded timely ACP engagement.Conclusions:Palliative care nurses have substantial knowledge and positive beliefs regarding ACP, however, some beliefs and practices lack alignment with qualitative data on patients’ wishes in COPD. While palliative care nurses are well placed to facilitate early implementation for patients with advanced COPD, ACP training and practice guidelines specific to COPD may increase implementation in this life-limiting disease.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-20T09:13:11Z
      DOI: 10.1177/10499091211018192
       
  • Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and
           Experiences Among Illinois Medical Cannabis Patients With A Terminal
           Diagnosis

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      Authors: James Alton Croker, Julie Bobitt, Sara Sanders, Kanika Arora, Keith Mueller, Brian Kaskie
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Introduction:Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care.Methods:Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in (n = 19) or planning to enroll (n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care.Results:In our sample, cancer patients (OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP (OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition (OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track (OR = 0.23 (0.15), p < .05).Discussion:Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-18T09:13:18Z
      DOI: 10.1177/10499091211018655
       
  • Homecoming—Dignity Through Movement at the End of Life: A Qualitative
           Interview Study With Healthcare Professionals

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      Authors: Fiona Cameron, Anna Janze, Anna Klarare
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Aim:To describe healthcare professionals’ and volunteers’ experiences of a pathway for movement on a hospice ward.Method:This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis.Results:Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: “A practical tool to facilitate physical activity” and “Companionship and goals give meaning to the day,” and 2 interpretative sub-themes: “Regaining control and having a choice” and “Feeling normal and alive” based on participants’ views of patient experiences.Significance of Results:Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling “at home” for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-18T09:03:56Z
      DOI: 10.1177/10499091211017876
       
  • Palliative Referrals in Advanced Cancer Patients: Utilizing the Supportive
           and Palliative Care Indicators Tool and Rothman Index

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      Authors: Abigail Sy Chan, Amit Rout, Christopher R. D.’Adamo, Irina Lev, Amy Yu, Kenneth Miller
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Timely identification of palliative care needs can reduce hospitalizations and improve quality of life. The Supportive & Palliative Care Indicators Tool (SPICT) identifies patients with advanced medical conditions who may need special care planning. The Rothman Index (RI) detects patients at high risk of acutely decompensating in the inpatient setting. SPICT and RI among cancer patients were utilized in this study to evaluate their potential roles in palliative care referrals.Methods:Advanced cancer patients admitted to an institution in Baltimore, Maryland in 2019 were retrospectively reviewed. Patient demographics, length of hospital stay (LOS), palliative care referrals, RI scores, and SPICT scores were obtained. Patients were divided into SPICT positive or negative and RI> 60 or RI < 60.Unpaired t-tests and chi-square tests were utilized to determine the associations between SPICT and RI and early palliative care needs and mortality.Results:227 patients were included, with a mean age of 68 years, 63% Black, 59% female, with the majority having lung and GI malignancies. Sixty percent were SPICT +, 21% had RI < 60. SPICT + patients were more likely to have RI < 60 (p = 0.001). SPICT + and RI < 60 patients were more likely to have longer LOS, change in code status, more palliative/hospice referrals, and increased mortality (p
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-18T09:03:16Z
      DOI: 10.1177/10499091211017873
       
  • Fluctuating Code Status: Strategies to Minimize End-of-Life Conflict in
           the Neurocritical Care Setting

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      Authors: Kelly A. Rath, Kristi L. Tucker, Ariane Lewis
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:There are multiple factors that may cause end-of-life conflict in the critical care setting. These include severe illness, family distress, lack of awareness about a patient’s wishes, prognostic uncertainty, and the participation of multiple providers in goals-of-care discussions.Methods:Case report and discussion of the associated ethical issues.Results:We present a case of a patient with a pontine stroke, in which the family struggled with decision-making about goals-of-care, leading to fluctuation in code status from Full Code to Do Not Resuscitate-Comfort Care, then back to Full Code, and finally to Do Not Resuscitate-Do Not Intubate. We discuss factors that contributed to this situation and methods to avoid conflict. Additionally, we review the effects of discord at the end-of-life on patients, families, and the healthcare team.Conclusion:It is imperative that healthcare teams proactively collaborate with families to minimize end-of-life conflict by emphasizing decision-making that prioritizes the best interest and autonomy of the patient.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-18T09:02:36Z
      DOI: 10.1177/10499091211017872
       
  • Healthcare Provider Perspectives Regarding Use of Medical Interpreters
           

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      Authors: Milagros D. Silva, Ronald D. Adelman, Vishwas Singh, Renuka Gupta, Jerad Moxley, Rosanna M. Sobota, Stephanie Tsai, Brittany T. Abel, Carrington M. Reid
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Healthcare providers increasingly care for patients with Limited English Proficiency (LEP). There is limited research evaluating healthcare provider utilization practices, attitudes, perceived benefits and barriers regarding the use of medical interpreters in end of life (EOL) and goals of care (GOC) conversations.Objectives:To elicit healthcare providers’ opinions of the role, factors that impact decisions to use medical interpreters and perceived utility of using medical interpreters when conducting EOL and GOC conversations with LEP patients and their families.Design:Cross-sectional survey of internal medicine trainees and attending physicians from a U.S. medical center.Results:A total of 117 surveys were collected with a response rate of 51%. In-person medical interpreters received higher ratings with regard to their helpfulness compared to telephone medical interpreters during EOL and GOC conversations. Being an attending physician and having received training in the use of a medical interpreter predicted higher composite scores reflecting greater awareness of the roles of medical interpreters and endorsement of best communication practices. In-person interpreters were viewed by a subset of participants as “standard of care” during EOL and GOC conversations.Conclusion:Having more years in practice and receiving training in the use of medical interpreters correlated with more favorable attitudes toward the role of medical interpreters and positive communication practices. Incorporating early training in the use of medical interpreters could help enhance communication practices and outcomes during EOL and GOC conversations with LEP patients.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-18T08:45:11Z
      DOI: 10.1177/10499091211015916
       
  • Evaluation of a Large Scale Advance Care Planning Co-Design Education
           Program for Chinese-Speaking People in Australia

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      Authors: Aaron Kee Yee Wong, Anna Collins, Andrew Ng, Luke Buizen, Jennifer Philip, Brian Le
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Advance care planning (ACP) is important, however ethnic minorities have half the completion rates in the United States compared to Caucasian counterparts, and in Australia only 3.5% of advance directives were completed by those overseas-born.Educational intervention improves ACP knowledge and subsequent uptake. We evaluated immediate and longer-term outcomes of a co-designed ACP education toolkit in Chinese-speaking people in Victoria, Australia.Methods:We conducted a cross-sectional survey of Chinese-speaking community members who participated in a co-designed Chinese ACP educational workshop. A self-selected subgroup were subsequently contacted 6 months later to determine longer-term outcomes.Results:Of 519 attendees across 17 workshops, 325 (63%) completed the evaluation. The majority (63%;n = 206) were previously unaware of ACP. Perception of receipt of useful information positively correlated with motivation to undertake ACP (r = 0.3486, p < 0.001). Of the 70 participants who consented to follow up, 36% (n = 26) agreed to participate in structured telephone interviews. English speakers were more likely to have undertaken ACP (n = 6 vs n = 3). ACP completion was not associated with being a carer or suffering from cancer or chronic illness.Conclusions:This first Australian study evaluating ACP co-design education implementation outcomes in Chinese-speaking people supports that motivation to undertake ACP is related to knowledge, albeit a modest ACP uptake in a small follow up sample. Clinicians should note that this assists with ACP uptake, with likely downstream improved health outcomes. This co-designed toolkit could be helpful in increasing ACP uptake. Future engagement by Chinese language societies to overcome further barriers to ACP is needed.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-17T11:13:03Z
      DOI: 10.1177/10499091211014833
       
  • Improving Medical and Nurse Practitioner Student Confidence and Clinical
           Skill in Advance Care Plan Development: A Multidisciplinary Mentorship
           Model

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      Authors: Anne C. Coogan, Megan M. Shifrin, Molly T. Williams, Jonathan Alverio, VJ Periyakoil, Mohana B. Karlekar
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Background:Advance care planning (ACP) is an integral aspect of patient-centered care, however medical (MD) and Adult-Gerontology Acute Care Nurse Practitioner (AGACNP) students receive minimal education on how to facilitate ACP discussions and ultimately feel uncomfortable having these discussions with patients.1-4 The aim of this project was to increase MD and AGACNP students’ perceived ability and confidence in leading ACP conversations through an ACP educational program called the Letter Project Pilot (LPP).Methods:The LPP consisted of faculty-supervised interactions in the inpatient setting during which students were able to lead ACP discussions with patients by guiding them through an advance directive worksheet that was structured in the format of a letter. Student participants were recruited from the MD and AGACNP programs associated with the academic medical center. Patients were recruited from inpatient medicine and geriatrics units at the academic medical center. At the end of the 3-month pilot, a voluntary, anonymous REDCap survey was used to evaluate 2 primary outcomes of interest:1) the association of the LPP pilot on perceived ACP skills, and 2) the perceived impact of the LPP pilot on ACP in future practice.Results:Students perceived that their experiences positively enhanced their current ACP skills and their ability to have ACP conversations in their future practice.Conclusion:The results support that the LPP is a scalable, cost-effective project that increases students’ perceived ability and confidence in leading ACP conversations.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-13T09:36:14Z
      DOI: 10.1177/10499091211017871
       
  • Integrating Palliative Care Assessment Tools to Enhance Understanding of
           Illness Trajectory in Post-Acute Care and Long-Term Care

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      Authors: Daphna Grossman, Yona Grossman, Ezra Nadler, Mark Rootenberg, Jurgis Karuza, Anna Berall
      Abstract: American Journal of Hospice and Palliative Medicine®, Ahead of Print.
      Objectives:To determine whether education and integration of the Gold Standard Framework Proactive Identification Guidance (GSF-PIG) and the Palliative Performance Scale (PPS) into care rounds, in post-acute care settings, can facilitate communication between the interprofessional care team to enhance understanding of illness trajectories, identifying those who would benefit from a palliative approach to care.Methods:Interprofessional care teams received training on the GSF-PIG and PPS which were integrated into weekly care rounds and completed a post-evaluation survey. A chart review was conducted for the 40 patients and residents reviewed with the GSF-PIG and PPS. Data analysis included descriptive statistics and comparisons of characteristics between patients and residents who were grouped as positive or negative on the GFS-PIG surprise question using chi square analyzes and t-tests.Results:The GSF-PIG and PPS were found to enhance communication within care teams and enhance understanding of patient and resident’s illness burden. The chart review revealed that patients and residents whom the team would not be surprised if they died within 1 year were older (p = .002), had a lower PPS score (p = .002) and had more indicators of decline (p < .001) compared to patients and residents the team would be surprised if they died within the year.Conclusion:Training interprofessional care teams on the utilization and integration of the GSF-PIG and PPS during weekly care rounds helped increase the understanding of patient and resident illness burden and illness trajectory to identify those who may benefit from a palliative approach to care.
      Citation: American Journal of Hospice and Palliative Medicine®
      PubDate: 2021-05-13T09:27:46Z
      DOI: 10.1177/10499091211018193
       
  • Physician Palliative Education Associated With High Use of Hospice Care
           Service

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      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

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      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

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      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

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      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

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      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

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      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
           Well-Being

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      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
           Malignancies

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      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

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      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

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      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

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      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

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      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

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      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

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      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

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      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
       
  • Shared Death Experiences: A Little-Known Type of End-of-Life Phenomena
           Reported by Caregivers and Loved Ones

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      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

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      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
           Study

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      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

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      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 https://connect.mayoclinic.org/.Results:Among 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
       
  • An Instrument to Assess Self-Perceived Competencies in End-of-Life Care
           for Health Care Professionals: The End-of-Life Care Questionnaire

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      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

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      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

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      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

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      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

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      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

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      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

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      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
       
  • Adapting Palliative Care Skills to Provide Substance Use Disorder
           Treatment to Patients With Serious Illness

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      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

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      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
       
  • Improving End of Life Cancer Outcomes Through Development and
           Implementation of a Spiritual Care Advocate Program

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      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

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      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

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      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

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      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
       
  • The Potential of Personalized Virtual Reality in Palliative Care: A
           Feasibility Trial

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      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

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      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

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      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
           Therapy

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      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

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      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
       
  • The Role and Activities of Board-Certified Chaplains in Advance Care
           Planning

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      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
           Interventions

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      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
       
  • Dementia and Early Do-Not-Resuscitate Orders Associated With Less
           Intensive of End-of-Life Care: A Retrospective Cohort Study

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      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

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      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

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      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

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      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
       
  • Hospice Palliative Care Volunteers’ Attitudes, Opinions, Experiences,
           and Perceived Needs for Training Around Medical Assistance in Dying (MAiD)
           

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      Authors: Stephen Claxton-Oldfield, Sophie Beaudette
      First page: 1282
      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
       
  • Implementation of a Multi-Modal Palliative Care Curriculum for Pediatric
           Residents

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      Authors: Eleny Romanos-Sirakis, Seleshi Demissie, Alice Fornari
      First page: 1322
      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
       
  • Examining the Characteristics of Patients With Non-Malignant Lung Disease
           at the Time of Referral to An Inter-Professional Supportive Care Clinic

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      Authors: Kristen M. Reipas, Daphna L. Grossman, Karen Lock, Valerie B. Caraiscos
      First page: 1329
      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
       
  • Palliative Care Services in the NeuroICU: Opportunities and Persisting
           Barriers

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      Authors: Michael Morris, Emily L. Mroz, Cristina Popescu, Jacqueline Baron-Lee, Katharina M. Busl
      First page: 1342
      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
       
  • Cholinesterase Inhibitor Use in Patients With Dementia Admitted to a
           Palliative Care Unit

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      Authors: Giulia-Anna Perri, Jessica Wilson, Sandra Gardner, Anna Berall, Anne Kirstein, Houman Khosravani
      First page: 1356
      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
       
  • A Systematic Review on Barriers to Palliative Care in Oncology

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      Authors: Jyotsana Parajuli, Judith E. Hupcey
      First page: 1361
      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
       
  • Sociodemographic Disparities in Access to Hospice and Palliative Care: An
           Integrative Review

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      Authors: Katie E. Nelson, Rebecca Wright, Anna Peeler, Teresa Brockie, Patricia M. Davidson
      First page: 1378
      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
       
  • Corrigendum to Assessment of Pain, Physical Symptoms, and Functional State
           of Patients With Progressive Neurological Disease in Palliative Care

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      First page: 1398
      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
       
 
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