Subjects -> MEDICAL SCIENCES (Total: 8196 journals)
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GERONTOLOGY AND GERIATRICS (125 journals)                     

Showing 1 - 122 of 122 Journals sorted alphabetically
Activities, Adaptation & Aging     Hybrid Journal   (Followers: 6)
Advances in Alzheimer's Disease     Open Access   (Followers: 8)
Advances in Geriatrics     Open Access   (Followers: 4)
Advances in Gerontology     Partially Free   (Followers: 9)
Advances in Parkinson's Disease     Open Access   (Followers: 2)
Age and Ageing     Hybrid Journal   (Followers: 106)
Aging & Mental Health     Hybrid Journal   (Followers: 40)
Aging and Cancer     Open Access   (Followers: 2)
Aging and Health Research     Open Access   (Followers: 1)
Aging Clinical and Experimental Research     Hybrid Journal   (Followers: 3)
Aging Medicine     Open Access   (Followers: 1)
Aging, Neuropsychology, and Cognition     Hybrid Journal   (Followers: 41)
Alzheimer's & Dementia     Hybrid Journal   (Followers: 50)
Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring     Open Access   (Followers: 5)
Alzheimer's & Dementia: Translational Research & Clinical Interventions     Open Access   (Followers: 5)
American Journal of Alzheimer's Disease and Other Dementias     Hybrid Journal   (Followers: 21)
American Journal of Geriatric Psychiatry     Hybrid Journal   (Followers: 19)
Anales en Gerontología     Open Access  
Angewandte GERONTOLOGIE Appliquée     Full-text available via subscription  
Annual Review of Gerontology and Geriatrics     Hybrid Journal   (Followers: 14)
Arthritis und Rheuma     Hybrid Journal  
Australasian Journal On Ageing     Hybrid Journal   (Followers: 12)
Australian Ageing Agenda     Full-text available via subscription   (Followers: 5)
B&G Bewegungstherapie und Gesundheitssport     Hybrid Journal   (Followers: 2)
Biogerontology     Hybrid Journal   (Followers: 1)
BMC Geriatrics     Open Access   (Followers: 17)
Canadian Geriatrics Journal     Open Access   (Followers: 6)
Canadian Journal on Aging     Hybrid Journal   (Followers: 17)
Clinical Gerontologist     Hybrid Journal   (Followers: 3)
Clinics in Geriatric Medicine     Full-text available via subscription   (Followers: 6)
Current Geriatrics Reports     Hybrid Journal   (Followers: 1)
Current Gerontology and Geriatrics Research     Open Access   (Followers: 11)
Dementia and Geriatric Cognitive Disorders     Full-text available via subscription   (Followers: 36)
Dementia and Geriatric Cognitive Disorders Extra     Open Access   (Followers: 19)
Drugs & Aging     Full-text available via subscription   (Followers: 10)
European Geriatric Medicine     Full-text available via subscription   (Followers: 3)
European Journal of Ageing     Hybrid Journal   (Followers: 16)
European Review of Aging and Physical Activity     Open Access   (Followers: 11)
Experimental Aging Research: An International Journal Devoted to the Scientific Study of the Aging Process     Hybrid Journal   (Followers: 2)
Experimental Gerontology     Hybrid Journal   (Followers: 5)
Frontiers in Aging Neuroscience     Open Access   (Followers: 22)
Gait & Posture     Hybrid Journal   (Followers: 17)
Generations     Full-text available via subscription   (Followers: 3)
Geriatric Care     Open Access   (Followers: 4)
Geriatric Medicine in General Practice     Full-text available via subscription   (Followers: 8)
Geriatric Orthopaedic Surgery Rehabilitation     Open Access   (Followers: 5)
Geriatrics     Open Access   (Followers: 3)
Geriatrics & Gerontology International     Hybrid Journal   (Followers: 12)
Geriatrie up2date     Hybrid Journal  
Geriatrie-Report : Forschung und Praxis in der Altersmedizin     Full-text available via subscription  
Gerodontology     Hybrid Journal   (Followers: 2)
Gerokomos     Open Access   (Followers: 1)
Geron     Full-text available via subscription  
Gerontologia     Open Access  
Gerontology     Full-text available via subscription   (Followers: 22)
Gerontology & Geriatrics Education     Hybrid Journal   (Followers: 8)
Gerontology and Geriatric Medicine     Open Access   (Followers: 5)
GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry     Hybrid Journal   (Followers: 5)
GeroScience : Official Journal of the American Aging Association (AGE)     Hybrid Journal   (Followers: 8)
Global Journal of Geriatrics Nursing     Open Access   (Followers: 4)
Hip International     Hybrid Journal  
I Advance Senior Care     Full-text available via subscription  
Immunity & Ageing     Open Access   (Followers: 9)
Innovation in Aging     Open Access   (Followers: 1)
International Journal of Ageing and Later Life     Open Access   (Followers: 1)
International Journal of Aging and Human Development     Full-text available via subscription   (Followers: 11)
International Journal of Alzheimer's Disease     Open Access   (Followers: 8)
JMIR Aging     Open Access  
Journal for Healthcare Quality     Hybrid Journal   (Followers: 28)
Journal of Adult Protection, The     Hybrid Journal   (Followers: 16)
Journal of Aging and Environment     Hybrid Journal   (Followers: 4)
Journal of Aging and Health     Hybrid Journal   (Followers: 28)
Journal of Angiogenesis Research     Open Access   (Followers: 2)
Journal of Applied Gerontology     Hybrid Journal   (Followers: 18)
Journal of Elder Abuse & Neglect     Hybrid Journal   (Followers: 6)
Journal of Frailty & Aging     Hybrid Journal  
Journal of Geriatric Cardiology     Open Access   (Followers: 3)
Journal of Geriatric Mental Health     Open Access   (Followers: 6)
Journal of Geriatric Oncology     Hybrid Journal   (Followers: 2)
Journal of Geriatric Physical Therapy     Hybrid Journal   (Followers: 14)
Journal of Geriatrics     Open Access   (Followers: 1)
Journal of Geriatrics and Palliative Care     Open Access   (Followers: 5)
Journal of Gerontological Social Work     Hybrid Journal   (Followers: 14)
Journal of Mid-life Health     Open Access  
Journal of Military and Veterans Health     Full-text available via subscription   (Followers: 7)
Journal of Parkinsonism and Restless Legs Syndrome     Open Access   (Followers: 2)
Journal of Parkinson’s Disease and Alzheimer’s Disease     Open Access   (Followers: 1)
Journal of Prevention of Alzheimer's Disease     Hybrid Journal   (Followers: 1)
Journal of Religion Spirituality & Aging     Hybrid Journal   (Followers: 7)
Journal of Social Work in End-of-Life & Palliative Care     Hybrid Journal   (Followers: 22)
Journal of the American Geriatrics Society     Hybrid Journal   (Followers: 68)
Journal of the Indian Academy of Geriatrics     Open Access   (Followers: 4)
Maturitas     Hybrid Journal   (Followers: 10)
Medycyna Wieku Podeszłego (Geriatric Medicine)     Open Access  
Mortality: Promoting the interdisciplinary study of death and dying     Hybrid Journal   (Followers: 9)
Neurodegenerative Diseases     Full-text available via subscription   (Followers: 1)
Neuroembryology and Aging     Full-text available via subscription   (Followers: 1)
NOVAcura     Hybrid Journal  
npj Aging and Mechanisms of Disease     Open Access   (Followers: 1)
npj Parkinson's Disease     Open Access   (Followers: 4)
Nursing Older People     Full-text available via subscription   (Followers: 9)
OA Elderly Medicine     Open Access  
Paediatrics & Child Health in General Practice     Full-text available via subscription   (Followers: 5)
Palliative Care & Social Practice     Open Access   (Followers: 3)
Parkinson's Disease     Open Access   (Followers: 12)
Pathobiology of Aging & Age-related Diseases     Open Access  
Physical & Occupational Therapy in Geriatrics     Hybrid Journal   (Followers: 56)
Quality in Ageing and Older Adults     Hybrid Journal   (Followers: 44)
Quality of Life Research     Hybrid Journal   (Followers: 20)
RASP - Research on Ageing and Social Policy     Open Access   (Followers: 4)
Revista Española de Geriatría y Gerontología     Full-text available via subscription  
Senex: Yaşlılık Çalışmaları Dergisi / Senex: Journal of Aging Studies     Open Access  
The Aging Male     Hybrid Journal   (Followers: 2)
The Gerontologist     Hybrid Journal   (Followers: 23)
The Journals of Gerontology : Series A     Hybrid Journal   (Followers: 22)
Topics in Geriatric Rehabilitation     Hybrid Journal   (Followers: 15)
Translational Medicine of Aging     Open Access  
Work, Aging and Retirement     Open Access   (Followers: 4)
Working with Older People     Hybrid Journal   (Followers: 40)
Zeitschrift fur Gerontologie und Geriatrie     Hybrid Journal   (Followers: 1)
Zeitschrift für Gerontopsychologie und -psychiatrie     Full-text available via subscription   (Followers: 1)
Zeitschrift für Palliativmedizin     Hybrid Journal  

           

Similar Journals
Journal Cover
Palliative Care & Social Practice
Number of Followers: 3  

  This is an Open Access Journal Open Access journal
ISSN (Online) 2632-3524
Published by Sage Publications Homepage  [1174 journals]
  • 7th Public Health Palliative Care International Conference

    • Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.

      Citation: Palliative Care and Social Practice
      PubDate: 2022-08-13T08:48:16Z
      DOI: 10.1177/26323524221119941
      Issue No: Vol. 16 (2022)
       
  • Voluntary stopping of eating and drinking in the age of medical assistance
           in dying: ethical considerations for physicians

    • Authors: Peter Allatt, Daniel D.M. Kim, Philip Hébert
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Since 2016, when medical assistance in dying (MAiD) became legal in Canada, healthcare professionals (HCPs) have become familiar with exploring and acting upon patients’ wishes to hasten death (WTHD). In contrast to MAiD, the literature on the voluntary stopping of eating and drinking (VSED) is very limited and there are no standards of practice or legal guidance to support HCPs. In this article, the legal and ethical literature as regards VSED is critically reviewed and new standards of practice are proposed.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-07-25T09:49:42Z
      DOI: 10.1177/26323524221112170
      Issue No: Vol. 16 (2022)
       
  • Corrigendum to “Cancer rehabilitation and palliative care for socially
           vulnerable patients in Denmark: An exploration of practices and
           conceptualisations”

    • Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.

      Citation: Palliative Care and Social Practice
      PubDate: 2022-07-22T11:19:46Z
      DOI: 10.1177/26323524221116245
      Issue No: Vol. 16 (2022)
       
  • How does housing affect end-of-life care and bereavement in low-income
           communities' A qualitative study of the experiences of bereaved
           individuals and service providers in the United Kingdom

    • Authors: Lorraine Hansford, Felicity Thomas, Katrina Wyatt
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement.Method:The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people’s experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis.Results:Housing emerged as an important factor affecting people’s experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying.Conclusion:The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-07-07T09:36:59Z
      DOI: 10.1177/26323524221110248
      Issue No: Vol. 16 (2022)
       
  • ‘Eat, sleep, internet and talk’: an exploratory study of play profile
           for children living with palliative care needs

    • Authors: Zainab A. Jasem, Anne-Sophie Darlington, Danielle Lambrick, Duncan C. Randall
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Play is central to children’s lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children’s play when receiving care in children’s hospital wards and hospices in Kuwait and the United Kingdom.Methods:A qualitative nonparticipatory observation design was used. Thirty-one children were observed, between the ages of 5 and 11 years, all diagnosed with life-limiting or life-threatening conditions and receiving palliative care. The data were analysed using content analysis.Results:The children’s illnesses were negatively impacting their ability to have typical play for their age and development. The children’s interactive play was with grown-ups and very rarely with other children. This was associated with isolation precautions, the child’s need for assistance and a lack of play resources that match children’s physical and cognitive abilities. This gave rise to their engagement in more sedentary, solitary play. The findings of the study did not indicate significant cultural differences between the two countries.Conclusion:Children living with palliative care needs may be socially isolated due to their illnesses and their play participation can be limited. Understanding the influencing factors that determine these children’s play is essential for implementing effective modifications to enhance their play routines.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-07-05T05:57:40Z
      DOI: 10.1177/26323524221105100
      Issue No: Vol. 16 (2022)
       
  • Cancer rehabilitation and palliative care for socially vulnerable patients
           in Denmark: an exploration of practices and conceptualisations

    • Authors: Nina Nissen, Henriette Knold Rossau, Marc Sampedro Pilegaard, Karen la Cour
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Despite a tax-funded, needs-based organisation of the Danish health system, social inequality in cancer rehabilitation and palliative care (PC) has been noted repeatedly. Little is known about how best to improve access and participation in cancer rehabilitation and PC for socio-economically disadvantaged and socially vulnerable patients.Aim:To gather, synthesise and describe practice-orientated development studies presented in Danish-language publications and examine the underpinning conceptualisations of social inequality and vulnerability; explore related views of stakeholders working in the field.Methods:The study comprised a narrative review of Danish-language literature on practice-orientated development studies which address social inequality and vulnerability in cancer rehabilitation and PC and an online stakeholder consultation workshop with Danish professionals and academics working in the field.Results:Two themes characterise the included publications (n = 8): types of interventions; conceptualisations of social inequality and vulnerability; three themes were identified in the workshop data: focus and type of interventions; organisation of cancer care; and vulnerability of the healthcare system. The publications and the workshop participants (n = 12) favoured approaches which provide additional individualised resources throughout the cancer trajectory for this patient group. The terms social inequality and social vulnerability are largely used interchangeably, and associated with low income and no or little education yet qualified with multiple descriptors, which reflect the diverse socio-economic situations professionals encounter in cancer patients and their psychosocial needs.Conclusion:Addressing social inequality and vulnerability in cancer rehabilitation and PC in Denmark entails practical and conceptual challenges. Of importance is individualised support and the integration of rehabilitation and PC into standardised care pathways. To conceive of social vulnerability as a layered, dynamic, relational and contextual concept reflects current practice in identifying the diversity of cancer patients who may benefit from additional support in accessing and participating in rehabilitation and PC.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-06-30T10:10:28Z
      DOI: 10.1177/26323524221097982
      Issue No: Vol. 16 (2022)
       
  • Corrigendum to “Supporting the dying is a community
           responsibility”

    • Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.

      Citation: Palliative Care and Social Practice
      PubDate: 2022-06-24T12:16:23Z
      DOI: 10.1177/26323524221112229
      Issue No: Vol. 16 (2022)
       
  • A UK qualitative study of living and dying with dementia in the last year
           of life

    • Authors: Jacqueline Crowther, Siobhan Horton, Kenneth Wilson, Mari Lloyd-Williams
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic.Methods:This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia.Results:Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer.Conclusion:This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the ‘expert’ in terms of their knowledge of their relatives’ care and preferences.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-06-21T10:16:22Z
      DOI: 10.1177/26323524221096691
      Issue No: Vol. 16 (2022)
       
  • Supporting the dying is a community responsibility

    • Authors: Samar M. Aoun
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.

      Citation: Palliative Care and Social Practice
      PubDate: 2022-06-17T05:35:04Z
      DOI: 10.1177/26323524221102468
      Issue No: Vol. 16 (2022)
       
  • Winging it: a qualitative study of knowledge-acquisition experiences for
           early adopting providers of medical assistance in dying

    • Authors: Janine Penfield Winters, Neil Pickering, Chrystal Jaye
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Medical Assistance in Dying (MAID) was legalized in Canada without a designated period for implementation. Providers did not have access to customary alternatives for training and mentorship during the first 1–3 years after legalization.Objective:To report on how doctors prepared for their first provision of MAID in the early period after legalization in Canada.Design:Qualitative research design within an interpretive phenomenological theoretical framework. We asked participants to describe their experiences preparing for first MAID provision. Analysis of transcripts elicited themes regarding training and information desired by early adopters for provision of newly legalized MAID.Participants:Twenty-one early adopting physician-providers in five Canadian provinces were interviewed.Results:Few formal training opportunities were available. Many early-adopting providers learned about the procedure from novel sources using innovative methods. They employed a variety of strategies to meet their needs, including self-training and organizing provider education groups. They acknowledged and reflected on uncertainty and knowledge gained from unexpected experiences and missteps. Key phrases from participants indicated a desire for early training and mentorship.Limitations:This study included only the perspective of physicians who were providers of MAID. It does not address the training needs for all health practitioners who receive requests for assisted death nor report the patient/family experience.Conclusion:The Canadian experience demonstrates the importance of establishing accessible guidance and training opportunities for providers at the outset of implementation of newly legalized assisted dying.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-06-13T09:08:23Z
      DOI: 10.1177/26323524221103889
      Issue No: Vol. 16 (2022)
       
  • Prognostic disclosure in cancer care: a systematic literature review

    • Authors: Roshan Sutar, Pooja Chaudhary
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Collusion in cancer care is the diplomatic concealment of information between a triad of the health care professional (HCP), patient, and caregiver. Free and expressive communication is determined by multiple factors, which establishes a healthy balance between ‘patient-centric’ and ‘family-centric’ decision making. The lack of a universal approach to prognostic disclosure techniques emphasizes the need for a systematic review of contemporary practice.Methods:A systematic review of the literature was conducted till June 2020 using themes based on cancer, communication, prognostic disclosure, and collusion by using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.Results:Fifty-three studies involving 10,569 subjects were studied for their utility on prognostic disclosure using different communication methods and interfaces. Twenty-three studies used a face-to-face interview with subjects while in-person telephonic interviews were conducted in two studies, 16 studies implicated semi-structured questionnaires, and 6 studies mentioned the development of a new technique/tool for disclosure. The duration of a session for prognosis-disclosure ranged from 22 min to 1 h. The involvement of palliative care specialists and mental health professionals was limited during the disclosure of the prognosis.Conclusion:The findings of the review indicate that patients in cancer care are aware of their diagnosis and to a certain extent of prognosis despite nondisclosure by their family members and treating teams. This review emphasizes the assessment of ‘disclosure wishes’ among patients and caregivers in separate interviews rather than simply relying on one specific method of interviewing. The nonconfrontational approach and training among HCPs are of utmost importance to build therapeutic resilience among the treating team involved in cancer care. Since many factors such as family wishes, cultural dissonance, medical model, and patient perception could become barriers to prognostic disclosure, there is a need to develop a universal approach to prognostic disclosure and handling associated collusion.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-06-07T11:43:57Z
      DOI: 10.1177/26323524221101077
      Issue No: Vol. 16 (2022)
       
  • Biathanatos revisited: Anabaptist perspectives on voluntarily stopping
           eating and drinking in the face of terminal illness

    • Authors: Aubrey DeVeny Incorvaia
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      IntroductionVoluntarily Stopping Eating and Drinking (VSED) is a legal means of hastening death through refusal of food and fluids – a topic rarely addressed in Christian Protestantism. Among this group, U.S. Mainline Protestants comprise nearly 15% of the population and are more likely to include social moderates and liberals who emphasize quality of life (over mere life) and may therefore be open to the practice.ObjectivesLeveraging the well-established and validated Theory of Planned Behavior – that posits a person’s intentions to carry out an action are motivated by one’s attitude, perception of subjective norms, and perceived behavioral control – this research elucidates clergy and congregants’ normative beliefs and anticipated tactical support for VSED, including their reactions to Christian-based justifications for this end-of-life option. Such reasoning includes that VSED is a “fast into eternal life” and is based on the example of Jesus Christ, who, in the face of ongoing suffering, determined the end of his own life when he stated, “It is finished,” and gave up his spirit – an insight originally argued by John Donne in Biathanatos (1647/1982).MethodsThis case study of one southern Anabaptist congregation employs a focus group and one-on-one interviews, capturing reactions to a vignette in which a hypothetical fellow parishioner intends to VSED in the face of ongoing suffering from a terminal illness.ResultsIn response to the presented vignette, study participants reported their affirmation of VSED. Responses to faith-based justifications for the practice varied widely.ConclusionIndividuals aiming to VSED in the face of terminal illness may have their intention affirmed by a church community, but will likely require additional caregiving support to achieve a hastened death. A nascent framework for future comparative studies of faith communities’ assessments of VSED is also proposed.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-05-31T11:59:17Z
      DOI: 10.1177/26323524221101074
      Issue No: Vol. 16 (2022)
       
  • Scaling out a palliative compassionate community innovation: Nav-CARE

    • Authors: Barbara Pesut, Wendy Duggleby, Grace Warner, Sunita Ghosh, Paxton Bruce, Rowena Dunlop, Gloria Puurveen
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:There is an urgent need for community-based interventions that can be scaled up to meet the growing demand for palliative care. The purpose of this study was to scale out a volunteer navigation intervention called Nav-CARE by replicating the program in multiple contexts and evaluating feasibility, acceptability, sustainability, and impact.Methods:This was a scale-out implementation and mixed-method evaluation study. Nav-CARE was implemented in 12 hospice and 3 nonhospice community-based organizations spanning five provinces in Canada. Volunteers visited clients in the home approximately every 2 weeks for 1 year with some modifications required by the COVID-19 public health restrictions. Qualitative evaluation data were collected from key informants (n = 26), clients/family caregivers (n = 57), and volunteers (n = 86) using semistructured interviews. Quantitative evaluation data included volunteer self-efficacy, satisfaction, and quality of life, and client engagement and quality of life.Findings:Successful implementation was influenced by organizational capacity, stable and engaged leadership, a targeted client population, and skillful messaging. Recruitment of clients was the most significant barrier to implementation. Clients reported statistically significant improvements in feeling they had someone to turn to, knowing the services available to help them in their community, being involved in things that were important to them, and having confidence in taking care of their illness. Improvements in clients’ quality of life were reported in the qualitative data, although no statistically significant gains were reported on the quality of life measure. Volunteers reported good self-efficacy and satisfaction in their role.Conclusion:The feasibility, acceptability, and sustainability of the program were largely dependent on strong intraorganizational leadership. Volunteers reported that their involvement in Nav-CARE enabled them to engage in ongoing learning and have a meaningful and relational role with clients. Clients and families described the positive impact of a volunteer on their engagement and quality of life.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-05-13T07:24:30Z
      DOI: 10.1177/26323524221095102
      Issue No: Vol. 16 (2022)
       
  • Conceptualizing impact in community-based participatory action research to
           engage communities in end-of-life issues

    • Authors: Max Kleijberg, Rebecca Hilton, Beth Maina Ahlberg, Carol Tishelman
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can be investigated in community-based health promotion approaches to EoL issues. We aim to investigate impact and the process of impact development in our community-based PAR project, Studio DöBra, a Swedish health promotion initiative to engage communities in EoL issues.Methods:We do this through a qualitative framework analysis expanding on Banks et al.’s theory of co-impact in PAR, based on longitudinal empirical data of Studio DöBra. Studio DöBra was developed in partnership with a range of community organizations and engaged children (9 years old) and older adults (most 80+) with topics related to dying, death, and loss through arts activities. The analyzed empirical data reflect the perspectives of community-partners and academic partners from interviews and meetings spanning 4.5 years.Findings:We present a model of impact development consisting of impact on individual and group development, action-oriented impact, and strategy-oriented impact; ways they relate to and evolve from one another; and how they may be affected by contextual influences.Conclusion:Besides contributing to conceptualizations of impact in PAR, findings contribute a community perspective to the limited literature investigating the impact of health promotion initiatives related to EoL issues.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-05-09T10:43:20Z
      DOI: 10.1177/26323524221095107
      Issue No: Vol. 16 (2022)
       
  • Solidarity and suffering: enrolled terminal patients’ and their
           caregiver’s experiences of the community-based palliative care programme
           in an urban slum of Bangladesh

    • Authors: Sayema Akter, Malabika Sarker, Puspita Hossain, Nezamuddin Ahmad, Shahaduz Zaman
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, ‘Momotamoy Korail’ run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka.Methods:This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semi-structured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project.Results:Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life.Conclusion:Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-05-05T05:53:44Z
      DOI: 10.1177/26323524221095104
      Issue No: Vol. 16 (2022)
       
  • Intersectoral communication amongst healthcare providers regarding care
           plans: a scoping review

    • Authors: Jodi Langley, Nikolas Jelicic, Taylor G. Hill, Emily Kervin, Barbara Pesut, Wendy Duggleby, Grace Warner
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Palliative care has become an increasingly important public health issue due to the rising acceptance of implementing a health promoting palliative care approach. To explore communication pathways that would facilitate implementation of this approach, we conducted a scoping review examining communication and enactment of care plans for older adults with life-limiting illnesses across health, social and community sectors. We used a scoping review methodology to map the current literature on communication plans between primary care and other sectors (community, health, and social). Five databases were searched MEDLINE (ovid), CINAHL (EBSCO), EMBASE (Elsevier), PsychInfo (EBSCO), and Scopus. The database search identified 5,289 records, after screening and hand-searching a total of 28 articles were extracted. Three major themes were determined through the records: (1) the importance of professional relationships across sectors, (2) the importance of community navigators in sharing the care plan, and (3) and creating comprehensive and multidisciplinary care plans. Findings suggested that enacting quality care plans is important to healthcare providers; the use of an electronic health records system can be useful in ensuring that all healthcare and community systems are in place to aid patients for better community-based care. Community navigators were also key to ensure that plans are communicated properly and efficiently. Further research is needed to determine how having a clear and properly implemented communication system for a healthcare system could facilitate community sector involvement in implementing care plans.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-04-21T11:16:45Z
      DOI: 10.1177/26323524221092457
      Issue No: Vol. 16 (2022)
       
  • Family caregiver inclusion is not a level playing field: toward equity for
           the chosen families of sexual and gender minority patients

    • Authors: William E. Rosa, Smita C. Banerjee, Shail Maingi
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.

      Citation: Palliative Care and Social Practice
      PubDate: 2022-04-19T11:41:22Z
      DOI: 10.1177/26323524221092459
      Issue No: Vol. 16 (2022)
       
  • Cognitive and behavioural bias in advance care planning

    • Authors: Stephen Whyte, Joanna Rego, Ho Fai Chan, Raymond J. Chan, Patsy Yates, Uwe Dulleck
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:We explore cognitive and behavioural biases that influence individual’s willingness to engage advance care planning (ACP). Because contexts for the initiation of ACP discussions can be so different, our objective in this study was to identify specific groups, particular preferences or uniform behaviours, that may be prone to cognitive bias in the ACP decision process.Method:We collected data from the Australian general public (n = 1253), as well as general practitioners (GPs) and nurses (n = 117) including demographics, stated preference for ACP decision-making; six cognitive bias tests commonly used in Behavioural Economics; and a framing experiment in the context of ACP.Results:Compared to GPs (M = 57.6 years, SD = 17.2) and the general public (58.1 years, SD = 14.56), nurses on average recommend ACP discussions with patients occur approximately 15 years earlier (M = 42.9 years, SD = 23.1; p 
      Citation: Palliative Care and Social Practice
      PubDate: 2022-04-19T11:36:42Z
      DOI: 10.1177/26323524221092458
      Issue No: Vol. 16 (2022)
       
  • ‘It was brutal. It still is’: a qualitative analysis of the challenges
           of bereavement during the COVID-19 pandemic reported in two national
           surveys

    • Authors: Anna Torrens-Burton, Silvia Goss, Eileen Sutton, Kali Barawi, Mirella Longo, Kathy Seddon, Emma Carduff, Damian J.J. Farnell, Annmarie Nelson, Anthony Byrne, Rhiannon Phillips, Lucy E. Selman, Emily Harrop
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Background:The COVID-19 pandemic has been a devastating, mass bereavement event characterised by high levels of disruption to end-of-life, grieving and coping processes. Quantitative evidence is emerging on the effects of the pandemic on grief outcomes, but rich qualitative evidence on the lived experiences of people bereaved during these times is lacking.Methods:We analysed qualitative data from two independent UK-wide online surveys to describe the experiences of 881 people bereaved during the pandemic. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut’s Dual Process Model (DPM) and concepts of loss-oriented and restoration-oriented coping (1999; 2010) as an analytic lens to further contextualise and interpret the data.Results:We identified six main themes: troubled deaths; mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping; work and employment; and support from the health and social care system. Examples of loss-oriented stressors included being unable to visit and say goodbye at the end of life and restricted funeral and memorialisation practices. Associated reactions were feelings of guilt, anger, and problems accepting the death and beginning to grieve. Examples of restoration-oriented stressors and reactions were severely curtailed support-systems and social/recreational activities, which impacted people’s ability to cope.Conclusion:Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualising these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM in explicating the impact of the pandemic on bereavement. We make recommendations for statutory, private and third sector organisations for improving the experiences of people bereaved during and following this and future pandemics.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-04-19T11:31:02Z
      DOI: 10.1177/26323524221092456
      Issue No: Vol. 16 (2022)
       
  • Talking about the end of life: communication patterns in amyotrophic
           lateral sclerosis – a scoping review

    • Authors: Anke Erdmann, Celia Spoden, Irene Hirschberg, Gerald Neitzke
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Amyotrophic lateral sclerosis (ALS) leads to death on average 2–4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options' (2) What are the challenges for all involved in decision making and communication about this topic' To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS. We included texts published between 2008 and 2018, and updated our search to May 2020. Sources were analysed in MAXQDA using deductively and inductively generated codes. After the final analysis, 123 full texts were included in this review. We identified a wide range of communicative challenges and six different and, in part, opposite communication patterns: avoiding or delaying communication on end-of-life issues, openly considering dying and actively seeking assistance, ignoring or disregarding patients’ wishes, discussing and respecting the patients’ wishes, engaging in advance care planning and avoiding or delaying advance care planning. The literature reveals a very heterogeneous response to end-of-life issues in ALS, despite several good-practice suggestions, examples and guidelines. We derive a strong need for harmonization and quality assurance concerning communication with PALS. Avoiding or delaying communication, decision making and planning, as well as ignoring or disregarding the patient’s will by HCP can be judged as a violation of the ethical principles of autonomy and non-maleficence.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-03-15T12:07:01Z
      DOI: 10.1177/26323524221083676
      Issue No: Vol. 16 (2022)
       
  • Developing a meta-understanding of ‘human aspects’ of
           providing palliative care

    • Authors: Anne Croker, Karin Fisher, Philip Hungerford, Jonathan Gourlay, Jennifer May, Shannon Lees, Jessica Chapman
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Objectives:Our intention was to develop a meta-understanding of the ‘human aspects’ of providing palliative care. Integral to developing this meta-understanding was recognising the individuality of people, their varied involvements, situations, understandings, and responses, and the difficulty in stepping back to get a whole view of this while being in the midst of providing palliative care. We intended for this meta-understanding to inform reflections and sense-making conversations related to people’s changing situations and diverse needs.Methods:Using collaborative inquiry, this qualitative research was undertaken ‘with’ clinicians rather than ‘on’ them. Our team (n = 7) was composed of palliative care clinicians and researchers from a co-located rural health service and university. We explored our personal perceptions and experiences through a series of 12 meetings over 8 months. In addition, through five focus groups, we acccessed perceptions and experiences of 13 purposively sampled participants with a range of roles as carers and/or healthcare providers. Data were dialogically and iteratively interpreted.Findings:Our meta-understanding of ‘human aspects’ of providing palliative care, represented diagrammatically in a model, is composed of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING. ATTRIBUTES OF HUMANITY are death’s inevitability, suffering’s variability, compassion’s dynamic nature, and hope’s precariousness. ACTIONS OF CARING include recognising and responding, aligning expectations, valuing relationships, and using resources wisely. The meta-understanding is a framework to keep multiple complex concepts ‘in view’ as they interrelate with each other.Significance of findings:Our meta-understanding, highlighting ‘human aspects’ of providing palliative care, has scope to embrace complexity, uncertainty, and the interrelatedness of people in the midst of resourcing, requiring, and engaging in palliative care. Questions are posed for this purpose. The non-linear diagrammatic representation of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING facilitates multiple ways of engaging and revisiting palliative care situations or navigating changes within and across them.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-03-09T12:00:47Z
      DOI: 10.1177/26323524221083679
      Issue No: Vol. 16 (2022)
       
  • Supportive needs of informal caregivers of people with amyotrophic lateral
           sclerosis in Switzerland: a qualitative study

    • Authors: Christopher Poppe, Kathi Schweikert, Tanja Krones, Tenzin Wangmo
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Objective:This study explores the supportive needs of informal caregivers of people with amyotrophic lateral sclerosis (ALS) in Switzerland.Method:We conducted semi-structured interviews with nine informal caregivers currently providing care to a person with ALS, 14 bereaved informal caregivers, and 13 healthcare professionals. Interviews were recorded on digital audio and analysed using an inductive thematic analysis within a realist framework.Result:Informal caregivers discussed five themes of support needs relating to being overburdened by administrative demand, in contact with healthcare providers, home support, especially during the terminal phase, and having or lacking social support. Healthcare professionals discussed three themes of support needs of informal caregivers which related to the general institutional support for informal caregivers, their own work as caring for informal caregivers, and the challenges in healthcare for families with ALS they encountered.Significance of results:Informal caregiving for people with ALS can be demanding. This study provides evidence for improvements in supporting informal caregivers. It shows administrative needs of informal caregivers, stresses their needs regarding advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-02-28T09:51:10Z
      DOI: 10.1177/26323524221077700
      Issue No: Vol. 16 (2022)
       
  • Reflections of family caregivers and health professionals on the everyday
           challenges of caring for persons with amyotrophic lateral sclerosis and
           cognitive impairments: a qualitative study

    • Authors: Lene Klem Olesen, Karen la Cour, Heidi With, Charlotte Handberg
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Aims and objectives:To explore reflections of family caregivers and health professionals regarding the challenges involved in caring for persons with amyotrophic lateral sclerosis and cognitive and/or behavioral impairments (PALS/CIs).Background:Family caregivers of PALS/CIs are highly burdened and at great risk of psychological sequela. Professionals working with these families can be negatively affected on their well-being and are at risk of burnout.Design:The design was a qualitative interview study.Methods:One focus group and 10 individual semi-structured interviews were conducted with seven family caregivers and nine professionals after the death of a PALS/CIs. The analysis was guided by the interpretive description methodology and the theory of sense of coherence. This study adheres to the COREQ guidelines and the ICMJE recommendations.Results:The family caregivers’ challenges regarding coping with everyday needs related to the sick person were associated with ‘Accepting that nothing else matters’, ‘Adjusting to new roles while balancing’, and ‘Realizing different values in relationships’; whereas the professionals’ challenges were related to ‘Collaboration a balancing act’, ‘Working in a home of sorrow’, and ‘Coordinating threads to tie’.Conclusion:Family caregivers found coping with the complexity of the diseases a challenge, and their everyday life needed constant adjustment to new roles, coping with inappropriate behavior, and navigating through the progression of the diseases of their sick relatives while collaborating with numerous professionals. The professionals struggled with coordinating and collaborating with the families and with other colleagues due to the severeness and complexity of diseases.Relevance to clinical practice:Findings point to the importance of relationships for caregivers and professionals and a need to provide support through an online palliative rehabilitation program that encompass coping strategies in relation to the diseases.Trial registration details:Id no. NCT 04638608.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-02-16T06:15:39Z
      DOI: 10.1177/26323524221077702
      Issue No: Vol. 16 (2022)
       
  • End of Life Aid Skills for Everyone in Scotland

    • Authors: Rebecca M. Patterson, Caroline Gibb, Mark A. Hazelwood
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Families, friends and communities have an important role to play in providing informal support when someone is faced with deteriorating health, caring responsibilities, death or bereavement. However, people can lack the confidence, skills and opportunities to offer this support. Public education is an example of a public health approach to palliative care that can help to develop individual skills and knowledge relating to these issues. In Scotland, the Scottish Partnership for Palliative Care (SPPC) has developed a new public education course called End of Life Aid Skills for Everyone (EASE) which aims to enable people to be more comfortable and confident supporting family/community members with issues they face during dying, death and bereavement. The aim was to design a course that imparts knowledge and skills while supporting development of social networks and avoids presenting professionals as the sole repository of expertise in the area of caring, dying and grieving. The intention was also to establish a sustainable delivery model that didn’t rely too heavily on busy palliative care specialists and which had the potential to bring the course to a diversity of communities. This article outlines the development of the EASE course, from conception to delivery.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-02-16T06:13:14Z
      DOI: 10.1177/26323524221076511
      Issue No: Vol. 16 (2022)
       
  • Editorial: Introducing the special collection on ‘Palliative Care for
           LGBTQ2S+ Individuals and Families’

    • Authors: Kimberly D. Acquaviva, Denise Marshall
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.

      Citation: Palliative Care and Social Practice
      PubDate: 2022-02-11T12:13:14Z
      DOI: 10.1177/26323524211073409
      Issue No: Vol. 16 (2022)
       
  • The safety and efficacy of using moxibustion and or acupuncture for
           cancer-related insomnia: a systematic review and meta-analysis of
           randomised controlled trials

    • Authors: Carol Chunfeng Wang, Ellen Yichun Han, Mark Jenkins, Xuepei Hong, Shuqin Pang, Lisa Whitehead, Deborah L. Kirk, Anne Williams
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Introduction:This study aimed to synthesise the best available evidence on the safety and efficacy of using moxibustion and/or acupuncture to manage cancer-related insomnia (CRI).Methods:The PRISMA framework guided the review. Nine databases were searched from its inception to July 2020, published in English or Chinese. Randomised clinical trials (RCTs) of moxibustion and or acupuncture for the treatment of CRI were selected for inclusion. Methodological quality was assessed using the method suggested by the Cochrane collaboration. The Cochrane Review Manager was used to conduct a meta-analysis.Results:Fourteen RCTs met the eligibility criteria. Twelve RCTs used the Pittsburgh Sleep Quality Index (PSQI) score as continuous data and a meta-analysis showed positive effects of moxibustion and or acupuncture (n = 997, mean difference (MD) = −1.84, 95% confidence interval (CI) = −2.75 to −0.94, p 
      Citation: Palliative Care and Social Practice
      PubDate: 2022-01-11T05:50:04Z
      DOI: 10.1177/26323524211070569
      Issue No: Vol. 16 (2022)
       
  • Understanding why patients request euthanasia when it is illegal: a
           qualitative study in palliative care units on the personal and practical
           impact of euthanasia requests

    • Authors: Danièle Leboul, Anne Bousquet, Aline Chassagne, Florence Mathieu-Nicot, Ashley Ridley, Elodie Cretin, Frédéric Guirimand, Régis Aubry
      Abstract: Palliative Care and Social Practice, Volume 16, Issue , January-December 2022.
      Context:Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient.Objectives:The aim of this study is to understand the purpose of euthanasia requests from the patient’s viewpoint and their personal and practical impact.Methods:We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed.Results:In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself.Conclusions:A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients’ sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.
      Citation: Palliative Care and Social Practice
      PubDate: 2022-01-11T05:46:23Z
      DOI: 10.1177/26323524211066925
      Issue No: Vol. 16 (2022)
       
 
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