Literature Search - Issue No. 4 (Jul 2023)

The primary focus of this literature search is selected articles, etc., on key issues in end-of-life care for which the full text is available online. Added, however, are a few noteworthy articles, etc., but for which access to the full text is available only with a subscription or for a one-time fee for the article in question.1 Also listed are a few postings of special interest on key websites that serve the hospice and palliative care communities-at-large, and selected news media reports. The next listing will be published in approximately two months.

Articles of particular interest.

Libraries in educational institutions and medical centres may have a subscription to the journal in question and hold a photocopying licence, which may facilitate cost-effective access.

Access to Care

  1. ‘Measuring and exploring the barriers to translating palliative care knowledge into clinical practice in rural and regional health-care settings,’ Palliative & Supportive Care. Posted online 30 June 2023. Full text 

    Related:

    1.2 ‘Service level characteristics of rural palliative care for people with chronic disease,’ Journal of Pain & Symptom Management. Posted online 20 June 2023. Abstract (w. introduction, section snippets, etc., references)

    1.3 ‘Palliative care in rural areas – collaboration between district nurses and doctors...,’ BMC Palliative Care. Posted online 15 June 2023. Full text

    1.4 ‘Challenges and strategies to improve the provision of end-of-life cancer care in rural and regional communities: Perspectives from Australian rural health professionals,’ Australian Journal of Rural Health. Posted online 31 May 2023. Full text

  2. ‘End-of-life care in the last three months before death in older patients with cancer in Belgium: A large retrospective cohort study using data linkage,’ Cancers. Posted online 26 June 2023. Full text
  3. ‘How gender-affirming care bans could impact hospice access, utilization, Hospice News. Posted online 26 June 2023. Full text
  4. ‘A systematic approach to assessing and addressing palliative care needs in an outpatient population,’ Journal of Pain & Symptom Management. Posted online 26 June 2023. Full text
  5. ‘Patient, caregiver, and clinician perceptions of palliative care that influence access and use: A qualitative meta-synthesis,’ American Journal of Hospice & Palliative Medicine. Posted online 22 June 2023. Abstract (w. references)
  6. ‘The ideal and the real: Patient and bereaved family caregiver perspectives on the significance of place of death,’ Death Studies. Posted online 20 June 2023. Full text 

    Related:

    6.2 “When a patient chooses to die at home, that’s what they want… comfort, home”: Brilliance in community-based palliative care nursing,’ Health Expectations. Posted online 9 June 2023. Full text

    6.3 ‘Indonesia’s unique social system as key to successful implementation of community- and home-based palliative care,’ JCO Global Oncology. Posted online 8 June 2023. Full text

    6.4 ‘Enhancing palliative care at home: A generalist community nursing case study,’ Australian Journal of Advanced Nursing. Posted online 31 May June 2023. Full text

    N.B. Scroll down to ‘Selected News Media Reports’ and ‘Few patients dying on home-based palliative care service...’

  7. ‘Barriers to the integration of palliative care in Ghana...,’ Palliative Care & Social Practice. Posted online 14 June 2023. Full text
  8. ‘Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography,’ Palliative Medicine. Posted online 9 June 2023. Full text 

    N.B. Scroll down to ‘Call for Papers’ and ‘Mental illness in the context of palliative care.’

  9. ‘Children with palliative care needs in Papua New Guinea, and perspectives from their parents and healthcare workers: A qualitative study,’ BMC Palliative Care. Posted online 8 June 2023. Full text

    Related:

    9.1 ‘For medically fragile kids, access to palliative care depends on family resources,’ California Health Report. Posted online 7 June 2023. Full text

  10. ‘The importance of developing palliative care quality indicators for the prison setting...,’ BMC Palliative Care. Posted online 8 June 2023. Full text

    Related:

    10.2 ‘Caring for each other: End-of-life behind bars,’ International Association for Hospice & Palliative Care Newsletter. Posted online 8 June 2023. Full text

    N.B. See ‘Challenging the Inequities in Palliative Care Provision for People in Prison: Policy, Research and Practice,’ European Association for Palliative Care, 18th World Congress, 15-17 June 2023. Conference abstracts

  11. ‘Enhancing equity and diversity in palliative care clinical practice, research and education,’ BMC Palliative Care. Posted online 5 June 2023. Full text 

    N.B. Scroll down to ‘Call for Papers’ and ‘Paving new and inclusive theoretical paths in organizational research on equity, diversity, and inclusion.’

  12. ‘Pandemic treaty should include provisions for palliative care,’ Bulletin World Health Organization. Posted online 1 June 2023. Full text 

    Related:

    12.2 ‘Palliative care and COVID-19 pandemic between hospital-centric based approach and decentralisation of health services: A valuable opportunity to turn the corner?’ EuroMediterranean Biomedical Journal, 2023;18(7):34-39. Full text

  13. ‘Life before death in India: A narrative review,’ Indian Journal of Palliative Care, 2023;29(2); 207-211. Full text

Education & Training

  1. ‘Time is short: Tools to integrate palliative care and communication skills education into your surgical residency,’ Journal of Surgical Education. Posted online 27 June 2023. Full text
  2. ‘Perceived palliative care education needs of GP trainees: A national study,’ Journal of Pain & Symptom Management. Posted online 26 June 2023. . Abstract (w. introduction, section snippets, etc., references)
  3. ‘Death doula working practices and models of care: The views of death doula training organisations,’ BMC Palliative Care. Posted online 23 June 2023. Full text
  4. ‘More investment in end-of-life care training of healthcare professionals is required to enhance care, evidence and outcomes,’ Evidence-Based Nursing. Posted online 21 June 2023. Overview (w. implications for practice and research)

    Related:

    4.2 ‘Evaluation of service user-led workshops in children’s palliative care education,’ Nursing Children & Young People. Posted online 19 June 2023. Abstract

    4.3 ‘Academic-clinical collaborations to build undergraduate nursing education in hospice and palliative care,’ Journal of Gerontological Nursing. Posted online 1 June 2023. Full text

    4.4 ‘Training proposal in palliative care for primary care nurses in a health area in Spain,’ Nursing Reports, 2023;13(2):890-901. Full text

    4.5 ‘Identifying enablers and barriers of palliative care learning in undergraduate nursing education: Systematic narrative review,’ Indonesian Nursing Journal of Education & Clinic, 2023;8(1). Full text (click on pdf icon)

  5. ‘Specialist palliative care and dementia: Staff challenges and learning needs,’ Journal of Palliative Care. Posted online 21 June 2023. Full text
  6. ‘“That just doesn’t feel right at times” – lone working practices, support and educational needs of newly employed healthcare assistants providing 24/7 palliative care in the community: A qualitative interview study,’ Palliative Medicine. Posted online 19 June 2023. Full text
  7. ‘Palliative care knowledge following an interdisciplinary palliative care seminar,’ American Journal of Hospice & Palliative Medicine. Posted online 15 June 2023. Abstract (w. references)
  8. ‘The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training,’ Palliative & Supportive Care. Posted online 8 June 2023. Full text

Essential Medicines

  1. ‘Global inequities in access to medical morphine continue,’ The Lancet. Online 24 June 2023. Full text (register free to access):

    Related:

    1.2 ‘Left behind in pain: Extent and causes of global variations in access to morphine for medical use and actions to improve safe access,’ World Health Organization. Posted online 16 June 2023. Download WHO report

    1.3 ‘Global disparity and opiate crisis imbalance,’ The American Journal of Surgery. Posted online 9 June 2023. Abstract (w. references)

    1.4 ‘Global analysis of adequacy of prescription opioid consumption across 214 countries and territories,’ medRxiv (Pre-print). Posted online 1 June 2023. Full text (click on pdf icon)

  2. ‘Mapping levels of palliative care service development in Malaysian public hospitals using the World Health Organization Public Health Model of Palliative Care,’ Journal of Pain & Symptom Management. Posted online 7 June 2023. Abstract (w. introduction, section snippets, etc., references)
  3. ‘Barriers to accessing internationally controlled essential medicines in Sub-Saharan Africa: A scoping review,’ International Journal of Drug Policy. Accessed online 5 June 2023. Full text
  4. ‘Challenges of access to oral morphine medicine: Palliative care at a crossroads for cancer patients in Ethiopia,’ Journal of Pain Research. Posted online 31 May 2023. Full text

Policy

  1. ‘Funding a “good death”: The financial crisis facing hospices,’ Quality in Ageing & Older Adults. Posted online 23 June 2023. Abstract (inc. practical and social implications)
  2. ‘An assessment of childhood cancer care services in India – gaps, challenges and the way forward,’ The Lancet (Regional Health: Southeast Asia). Posted online 19 June 2023. Full text
  3. ‘Opinion: New study reaffirms value of hospice – policymakers must act to expand and protect this type of care,’ MedCity (U.S.). Posted online 15 June 2023. Full text 

    N.B.Link to ‘Value of Hospice in Medicare,’ published by the University of Chicago, embedded in MedCity report.

    Related:

    3.2 ‘Perceptions of palliative care: Demographics and health status among the general population in Florida and the United States,’ American Journal of Hospice & Palliative Medicine. Posted online 28 June 2023. Abstract (w. references)

    3.3 ‘Explaining disparities in end-of-life cancer care,’ Journal of Clinical Oncology. Posted online 20 June 2023. Full text

    3.4 ‘Place of death from cancer in U.S. states with vs without palliative care laws,’ JAMA Network Open. Posted online 8 June 2023. Full text

    3.5 ‘Why palliative care offerings can be a differentiator for home health providers,’ Home Health Care. Posted online 31 May 2023. Full text

Research

  1. ‘Palliative care for all? An assessment of racial and ethnic disparities research with solutions,’ Journal of Pain & Symptom Management. Posted online 24 June 2023. Letter to the Editor
  2. ‘A multidimensional account of social justice for global health research,’ Bioethics. Posted online 19 June 2023. Full text
  3. ‘Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research,’ Research Involvement & Engagement. Posted online 15 June 2023. Full text
  4. ‘The challenges of international collaboration in conflict and health research: Experience from the Research for Health in Conflict-Middle East & North Africa (R4HC-MENA) partnership,’ Conflict & Health. Posted online 14 June 2023. Full text
  5. ‘Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying,’ Journal of Applied Research in Intellectual Disabilities. Posted online 14 June 2023. Full text

Research (Protocols)

  1. ‘Palliative care delivery models: A systematic scoping review protocol,’ International Journal of Palliative Nursing. Posted online 20 June 2023. Abstract
  2. ‘Decision support training for advanced cancer family caregivers: Study protocol for the CAre Supporters Coached to be Adept Decision (CASCADE) factorial trial,’ Contemporary Clinical Trials. Accessed 10 June 2023.Full text
  3. ‘Educational innovation as a communication strategy in palliative care: A study protocol...,’ Plos One. Posted online 9 June 2023. Full text
  4. ‘Interventions to support medical trainee well-being when dealing with patient death...,’ BMJ Open. Posted online 8 June 2023. Full text
  5. ‘Status exploration and analysis of regional hospice and palliative care networks in Germany...,’ Plos One. Posted online 2 June 2023. Full text
  6. ‘Identification of palliative care needs and prognostic factors of survival in tailoring appropriate interventions in advanced oncological, renal and pulmonary diseases...,’ BMJ Open. Posted online 30 May 2023. Full text
  7. ‘Using Palliative Leaders in Facilities to Transform care for people with Alzheimer’s Disease (UPLIFT-AD): Protocol of a palliative care clinical trial in nursing homes,’ Research Square. Posted online 30 May 2023. Full text

Of Related Interest

  1. ‘Advancing the vision of palliative care for the older adult,’ Clinics in Geriatric Medicine, 2023;39(3):11-12. Full text 

    Related:

    1.2 ‘Increased patient satisfaction by integration of palliative care into geriatrics: A prospective cohort study,’ Plos One. Posted online 22 June 2023. Full text

    1.3 ‘Global geriatric palliative care,’ Clinics in Geriatric Medicine, 2023;39(3):465-473. First page view

  2. ‘Prioritising integration of palliative care to prevent suffering,’ The Lancet (Neurology), 2023;22(7):541. Full text

    Related:

    2.2 ‘Palliative care to support the needs of adults with neurological disease,’ The Lancet (Neurology), 2023;22(7):619-631. Summary (w. references)

    2.3 ‘Palliative care in amyotrophic lateral sclerosis,’ Journal of Pain & Symptom Management. Posted online 25 June 2023. Abstract (w. introduction, section snippets, etc., references)

    2.4 ‘Adopting a palliative care mindset is an unmet need in Parkinson’s...,’ Clinical Parkinsonism & Related Disorders. Posted online 20 June 2023. Full text

    2.5 ‘Improving collaboration between palliative care and neurology: Focus on patient, family and healthcare provider experience,’ Alzheimer’s & Dementia. Posted online 16 June 2023. Abstract

    2.6 ‘Guideline “motor neuron diseases” of the German Society of Neurology (Deutsche Gesellschaft für Neurologie),’ Neurological Research & Practice. Posted online 15 June 2023. Full text

    2.7 ‘The current state of neuropalliative care in developing countries...’ Postgraduate Medical Journal. Posted online 10 June 2023. Abstract

    2.8 ‘Palliative and end-of-life care for people living with motor neurone disease: Ongoing challenges and necessity for shifting directions,’ Brain Sciences. Posted online 7 June 2023. Full text

  3. ‘Perceptions of palliative and end-of-life care capacity among frontline staff and administrators in long-term care homes during the COVID-19 pandemic in Ontario, Canada: A mixed-methods evaluation,’ Journal of the American Medical Directors Association. Accessed online 1 July 2023. Full text 

    Related:

    3.2 ‘Challenges and innovations in hospice care during the COVID-19 pandemic: A scoping review,’ Journal of Social Work in End-of-Life & Palliative Care. Posted online 30 June 2023. Full text

  4. ‘Realizing homeliness in palliative care: Inpatient and family perspectives on designing the built environment,’ Design for Health. Posted online 30 June 2023. Full text 

    Related:

    4.2 ‘Nursing in deathworlds: Necropolitics of the life, dying and death of an unhoused person in the United States healthcare industrial complex,’ Nursing Philosophy. Posted online 18 June 2023. Full text

    N.B. Scroll down to ‘Selected News Media Reports’ and ‘Unhoused Americans have few places to turn when death is near.’

  5. ‘Telehealth requires improved evidence to achieve its full potential in palliative care,’ Palliative Medicine. Posted online 30 June 2023. Full text 

    Related:

    5.2 ‘Can digital health close the health equity gap in palliative care?’ Cancer Nursing, 2023; 46(4):251. Full text

    5.3 ‘Endoflife dignity in palliative care, pandemic COVID19 and telemedicine,’ Journal of Clinic al & Scientific Research, 2023;12(2):140-148. Full text

  6. ‘Patients’ perception of hope in palliative care...,’ Patient Education & Counselling. Posted online 30 June 2023. Full text
  7. ‘Ambitions for palliative and end-of-life care: Mapping examples of use of the framework across England,’ BMC Palliative Care. Posted online 29 June 2023. Full text
  8. ‘Searching for human connection to transcend symbolisms in pediatric palliative care,’ Revista Brasileira de Enfermagem. Posted online 26 June 2023. Full text 

    Related:

    8.2 ‘Perinatal palliative care in sub-Saharan Africa: Recommendations for practice, future research, and guideline development,’ Frontiers in Pediatrics. Posted online 26 June 2023. Full text

    8.3 ‘The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life,’ Journal of Pediatric Nursing. Posted online 22 June 2023. Abstract (w. introduction, section snippets, etc., references)

    8.4 ‘Palliative care for children: Methodology for the development of a clinical practice guideline,’ Research Square. Posted online 16 June 2023. Full text

  9. ‘Professional roles, services, and quality of life for end-of-life doulas in the United States,’ Journal of Pain & Symptom Management. Posted online 24 June 2023. Abstract (w. introduction, section snippets, etc., references)
  10. ‘Is a lower socio-economic position associated with poorer outcomes for end-of-life care?’ International Journal of Palliative Nursing. Accessed online 22 June 2023. Full text (click on pdf icon)
  11. ‘A survey of genetic and palliative care health professionals’ views of integrating genetics into palliative care,’ European Journal of Human Genetics. Posted online 21 June 2023. Full text
  12. ‘End-of-life discussions from the perspective of social care and healthcare professionals in palliative care,’ Omega – Journal of Death & Dying. Posted online 21 June 2023. Full text
  13. ‘Possibility of alleviating difficulties of health and social care professionals engaged in end-of-life care through clinical art program,’ Journal of General & Family Medicine. Posted online 19 June 2023. Full text
  14. ‘Discrimination against the dying,’ Journal of Medical Ethics. Posted online 15 June 2023. Full text
  15. ‘Perceived barriers to providing spiritual care in palliative care among professionals: A Portuguese cross-sectional study,’ International Journal of Environmental Research & Public Health. Posted online 14 June 2023. Full text
  16. ‘Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): A multinational European research project,’ Palliative Care in Social Practice. Posted online 14 June 2023. Full text
  17. ‘Costs of cancer care in the last five days of life in a low-resource setting,’ Research Square (Pre-print). Posted online 13 June 2023. Full text
  18. ‘Observational study of survival outcomes of people referred for “fast-track” end-of-life care funding in a district general hospital: Too little too late?’ BMJ Open Quality. Posted online 8 June 2023. Full text 

    Related:

    18.2 ‘Assessing the quality of care for people dying of cancer in hospital – development of the QualDeath framework,’ Australian Health Review. Posted online 7 June 2023. Abstract

    18.3 ‘National Audit of Care at the End of Life (NACEL): Dying in hospitals,’ Clinical Oncology (Pre-proof). Accessed 2 June 2023. Full text

    N.B. NACEL measures the experience of care in hospitals at the end of life (EoL) for dying people and those important to them, to identify areas for service improvement, and to provide a strategic overview of progress with the provision of high-quality care at the EoL in England, Wales and Northern Ireland.

  19. ‘Pharmacists are initiators in palliative care for patients with rare diseases,’ Orphanet Journal of Rare Diseases. Posted online 8 June 2023. Full text
  20. ‘Real world experience of change in psycho-existential symptoms in palliative care,’ Journal of Pain & Symptom Management. Posted online 5 June 2023. Full text
  21. ‘Stakeholders’ perspectives of a good death: A qualitative study from Thailand,’ Heliyon, 2023;9(5):E15775. Full text

Call for Papers

  1. ‘Mental illness in the context of palliative care,’ American Journal of Hospice & Palliative Medicine. Closing date for submissions 5 April 2024 Submission instructions
  2. ‘Paving new and inclusive theoretical paths in organizational research on equity, diversity, and inclusion,’ Organizational Psychology Review. Closing date for submissions 31 January 2024. Submission instructions

Website Postings of Interest   

  1. ‘Launch of the 2023 National Strategy for Palliative Care.’ Posted on the Ministry of Health, Government of Singapore, website 1 July 2023. Full text
  2. ‘Pediatric Facts & Figures Report.’ Posted on the [U.S.] National Hospice & Palliative Care Organization website 28 June 2023.
  3. ‘Scottish Bereavement Summit.’ Accessed on the Scottish Partnership for Palliative Care website 28 June 2023.
  4. ‘Developing the evidence base on the quality and inequality of end-of-life care.’ Posted on the [U.K.] Nuffield Trust website 27 June 2023.
  5. ‘Palliative care education and training opportunities for aged care workers.’  Posted on the website of the Department of Health & Aged Care, Government of Australia 22 June 2023. Full text
  6. ‘Debunking hospice myths propagated by recent news story.’ Posted on the [U.S.] National Hospice & Palliative Care Organization website 21 June 2023
  7. ‘Anti-colonial palliative care.’ Posted on European Association for Palliative Care website 20 June 2023.
  8. ‘Improving hospital mortuaries for bereaved families.’ Posted on the Irish Hospice Foundation website 16 June 2023.
  9. ‘Best Interests – Support Resources.’ Posted on the [U.K.] Together for Short Lives website 13 June 2023.
  10. ‘Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada.’ Posted on the Canadian Partnership Against Cancer website 8 June 2023.
  11. ‘End-of-life care often involves pain or symptom management.’ Posted on Statistics Netherlands’ website 8 June 2023.
  12. ‘Need for pediatric data: Canadian Network of Palliative Care for Children response on Canadian Institut for Health Information report on access to palliative care in Canada.’ Posted on Canadian Hospice Palliative Care Association website 6 June 2023: Full text 

    N.B. ‘Access to Palliative Care In Canada,’ Canadian Institute for Health Information. Posted online 27 April 2023.

  13. ‘Palliative and end-of-life care profiles...’ Office of Health Improvement & Disparities. Posted on UK Government website 6 June 2023.

Selected News Media Reports

  1. ‘Millions suffer preventable pain because of morphine disparity, WHO says,’ The Washington Post. [U.S.] Posted online 2 July 2023. Full text 

    N.B. ‘Left behind in pain: Extent and causes of global variations in access to morphine for medical use and actions to improve safe access,’ World Health Organization. Posted online 16 June 2023. Download WHO report

    Related:

    1.2 ‘Palliative care doctors warn of “terrible pain” if liquid morphine Ordine discontinued in Australia,’ ABC Radio News. Posted online 1 July 2023. Full text

  2. ‘Few patients dying on home-based palliative care service, new report finds,’ McKnight’s Home Care [U.S.]. Posted online 21 June 2023. Full text 

    N.B. Link to ‘Spotlight on Home-Based Palliative Care,’ published jointly by the Center to Advance Palliative Care and the Palliative Care Quality Collaborative, embedded in the McKnight’s Home Care article.

    Related:

    2.2 ‘Unhoused Americans have few places to turn when death is near,’ PBS News Hour (Chattanooga, Tennessee). Posted online 16 June 2023. Full text

  3. ‘Hospices: Rise in demand for children’s palliative care expected,’ BBC News (Wales). Posted online 20 June 2023. Full text 

    Related:

    3.2 ‘Between 5,000 and 8,000 Bulgarian children need daily palliative care: Services are inadequate,’ ArmenPress. Posted online 19 June 2023. Full text

  4. ‘Hospice is a profitable business, but non-profits mostly do a better job,’ The New York Times (U.S.). Posted online 10 June 2023. Full text 

    Related:

    4.2 ‘Center to Advance Palliative Care Chief Executive Officer Brynn Bowman: Palliative care a fundamental shift in health system,’ Hospice News. Posted online 30 May 2023. Full text

  5. ‘Narrowing the gap for palliative care in Nepal,’ The Nepali Times. Posted online 8 June 2023. Full text
  6. ‘“The hardest and most beautiful conversation I’ve ever had”: How end-of-life storytelling on TikTok helps us process death,’ The Conversation (Australia). Posted online 7 June 2023. Full text