Literature Search - Issue No. 19 (September 2024)

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 four to six weeks.

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. ‘Past trends and future projections of palliative care needs in Chile: analysis of routinely available death registry and population data,’ BMC Medicine. Posted online 2 September 2024. Full text
  2. ‘Registry study of cardiovascular death in Sweden 2013-2019: Home as place of death and specialized palliative care are the preserve of a minority,’ International Journal of Cardiology: Cardiovascular Risk & Prevention. Posted online 2 September 2024. Full text
  3. ‘Barriers and facilitators of early palliative care in the trajectory of people living with chronic condition: A mini review using socio-ecological framework to inform public health strategy,’ Journal of Multidisciplinary Healthcare (Indonesia). Posted online 29 August 2024. Full text

    Related:

    3.2 ‘Barriers to palliative care implementation in Indonesia: A literature search review,’ Cendekia International Conference on Health & Technology. Posted online 5 August 2024. Full text

    Website Posting of Interest: ‘Study reveals “patchy and inconsistent” end-of-life care,’ Cambridge University (U.K.),1 3 September 2024.

  4. ‘Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales,’ Marie Curie.

News Media Report of Interest: ‘Half number of patients referred for palliative care in Portugal die before space comes available,’ Portugal Resident, 14 August 2024: https://bit.ly/3X4Qu2z

Policy & Practice

  1. ‘Health experts’ perspectives on barriers, facilitators, and needs for improvement of hospital care in the dying phase,’ International Journal of Clinical Practice (Germany). Posted online 3 September 2024. Full text
  2. ‘Mapping the ripple effects of a compassionate university for serious illness, death, and bereavement,’ Palliative Care & Social Practice (Belgium). Posted online 31 August 2024. Full text
  3. ‘Not intervening as a form of care: Negotiating medical practices at the end of life,’ Medical Anthropology Quarterly (U.K.). Posted online 27 August 2024. Full text
  4. ‘Future scenarios of palliative care in health system of Iran: A multi-method study,’ Frontiers in Public Health. Posted online 26 August 2024. Full text
  5. ‘Patterns and determinants of patient sharing in end-of-life health services: Empirical evidence from the Italian national health service,’ International Journal of Healthcare Management (Italy). Posted online 26 August 2024. Full text
  6. ‘Defining and quantifying population-level need for children’s palliative care: Findings from a rapid scoping review,’ BMC Palliative Care. Posted online 22 August 2024. Full text

    N.B. Contributing authors from Ireland and the U.K.

  7. ‘Defining and developing primary palliative care as an essential element of primary healthcare,’ Palliative Medicine. Posted online 19 August 2024. Full text

    N.B. Contributing authors from Germany and the U.K.

  8. ‘Mental health trajectories and psychosocial factors associated with resilience among palliative care professionals,’ Research Square (France). Posted online 15 August 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

    Related:

    8.2 ‘“I’m not an anxious person”: End-of-life care workers constructing positive psychological states,’ BMC Psychology (China). Posted online 9 August 2024. Full text

  9. ‘“There is no such word as palliative care for us at the moment”: A mixed-method study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan,’ Palliative Care & Social Practice. Posted online 15 August 2024. Full text
  10. ‘Palliative mobile care service as an integrated care model,’ Orvosi Hetilap (Hungary). Posted online 4 August 2024. Full Hungarian-language text (w. English language abstract)

Website Posting of Interest: ‘Proactive strategies for retaining a passionate palliative care team,’ Center to Advance Palliative Care (U.S.), 16 August 2024.

Education & Training

  1. ‘Incorporating palliative care training in medical curriculum: A step towards social accountability,’ Social Innovations Journal (India). Posted online 4 September 2024. Full text (click on pdf icon)

    Related:

    1.2 ‘Interventions to support medical trainee well-being after patient death: A scoping review,’ Journal of Hospital Medicine (United Arab Emirates). Posted online 18 August 2024. Full text

    1.3 ‘Knowledge and awareness of undergraduate medical students regarding palliative care in Pakistan: A cross-sectional study,’ Research Square. Posted online 5 August 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

    1.4 ‘The teaching of palliative care in medical schools in Salvador, Brazil: Document analysis,’ Revista Brasileira de Educação Médica. Posted online 5 August 2024. Full text

  2. ‘Is basic training in palliative care sufficient to guarantee the improvement of knowledge and skills in this area?: Medical knowledge assessment study,’ ResearchGate (Portugal). Posted online 5 September 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

  3. ‘Development of a Canadian medical assistance in dying curriculum for healthcare providers,’ Journal of Medical Education & Curricular Development (Canada). Accessed online 2 September 2024. Full text
  4. ‘Communicating care in digital social spaces: Mixed-method analysis of influence of social media on palliative care,’ Indian Journal of Palliative Care (India). Posted online 23 August 2024. Full text (click on pdf icon)
  5. ‘“The patient as teacher”: Thematic analysis of undergraduate medical students’ experiences with an experiential learning project in palliative care,’ Research Square (Germany). Posted online 16 August 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

  6. ‘Nursing students’ knowledge and related factors towards palliative care: A systematic review,’ Journal of Nursing Reports in Clinical Practice. Posted online 11 August 2024. Full text

    N.B. Contributing authors from Canada, Iran, Malaysia and Türkiye.

Essential Medicines

Website Postings of Interest: ‘Shortages of critical pain relief continue– advice to clinicians,’ Palliative Care Australia, 21 August 2024; ‘Access to medicines: A cornerstone of the right to health,’ Pallium India. Posted online 30 July 2024.

News Media Report of Interest: ‘Australia is running low on oral morphine. What does that mean for pain relief in palliative care?’ The Conversation, 23 August 2024.

Research (Issues)

  1. ‘Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: An interpretive descriptive study,’ Research Involvement & Engagement (Canada). Posted online 6 September 2024. Full text
  2. ‘It’s bittersweet, it's uncomfortable, yes, but it's necessary. Methodological reflections on the experiences of young adults with life-shortening conditions on being involved in inclusive qualitative research,’ Progress in Palliative Care (U.K.). Posted online 19 August 2024. Full text
  3. ‘Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement,’ Palliative Medicine (U.K.). Posted online 10 August 2024. Full text
  4. ‘Improving palliative care research reporting: A guide to reporting guidelines,’ Indian Journal of Palliative Care (India). Posted online 9 August 2024. Full text

Research (Call for Papers)

  1. ‘Cultural considerations in palliative care,’ BMC Palliative Care. Submission deadline 20 February 2025.

Research (Protocols)

  1. ‘Knowledge and practices of youth awareness on death and dying in school settings: A systematic scoping review protocol,’ BMC Palliative Care (Canada). Posted online 24 August 2024. Full text
  2. ‘Identification of unmet palliative care needs of nursing home residents: A scoping review protocol,’ Plos One (Ireland). Posted online 8 August 2024. Full text

Of Related Interest

Economic Impact of Palliative & End-of-Life Care

  1. ‘Systematic review of the cost-effectiveness of home-based palliative care interventions in patients with cancer: A critical analysis,’ Cancer Management & Research. Posted online 6 September 2024. Full text

    N.B. Contributing authors from Czech Republic and Spain.

    Related:

    1.2 ‘Economic value of unpaid family caregiver time following hospital discharge and at end of life,’ Journal of Pain & Symptom Management (U.S.). Posted online 28 August 2024. Abstract (w. Introduction, Section Snippets, References, etc.)

    1.3 ‘A cost-consequence analysis of the Queensland specialist palliative rural telehealth (SPaRTa) service,’ Progress in Palliative Care (Australia). Posted online 19 August 2024. Full text

    1.4 ‘How many people will live and die with serious illness in Ireland to 2040? Estimated needs and costs using microsimulation,’ Journal of Economics of Ageing. Posted online 13 August 2024. Full text

Website Postings of Interest: ‘Costs of informal care – a wake-up call,’ European Association for Palliative Care, 20 August 2024; ‘Hospice funding crisis: An urgent message,’ eHospice (U.K.), 14 August 2024.

Psychosocial & Spiritual Care

  1. ‘Time to develop guidelines for spiritual care in serious illness,’ Palliative Medicine Reports (U.S.). Posted online 6 September 2024. Full text

    Related:

    2.2 ‘To talk or not to talk about existential questions: An interview study with elderly persons and patients with fatal disease,’ American Journal of Hospice & Palliative Medicine (Sweden). Posted online 21 August 2024. Full text

    2.3 ‘Navigating complexity: Spiritual care discourses among Swedish palliative care professionals,’ Journal of Religion & Health (Sweden). Posted online 20 August 2024. Full text

    2.4 ‘Spiritual care interventions for palliative care patients: A scoping review,’ Palliative & Supportive Care (Brazil). Posted online 13 August 2024. Full text

    2.5 ‘“It doesn’t always have to be an expert”: Professionals’ perceptions of practical aspects of the existential dimension of care for people approaching death,’ Omega – Journal of Death & Dying (Sweden). Posted online 10 August 2024. Full text

    2.6 ‘Spiritual care for cancer patients at the end of life,’ Healthcare (Romania). Posted online 9 August 2024. Full text

Assisted Dying Practices

  1. ‘Helping people to die,’ Bulletin of the World Health Organization (WHO). Posted online 1 September 2024. Full text

    Related:

    3.2 ‘Policies and cost analyses of voluntary assisted dying (VAD) laws: A mapping review and analysis,’ Health Economics Review (Australia). Posted online 26 August 2024. Full text

    3.3 ‘Maybe for unbearable suffering: Diverse racial, ethnic and cultural perspectives of assisted dying: A scoping review,’ Palliative Medicine (Australia). Posted online 10 August 2024. Full text

    3.4 ‘Aftercare provision for bereaved relatives following euthanasia or physician-assisted suicide: A cross-sectional questionnaire study among physicians,’ International Journal of Public Health (The Netherlands). Posted online 24 July 2024. Full text

    3.5 ‘The assisted dying debate: Supporting GPs in a changing landscape,’ British Journal of General Practice, 2024;74(740):106-107. Full text

    N.B. See special issue of ‘Literature Search’ on assisted dying practices.

Technology

  1. ‘Assessing telehealth in palliative care: A systematic review of the effectiveness and challenges in rural and underserved areas,’ Cureus. Posted online 31 August 2024. Full text

    N.B. Contributing authors from India and Saudi Arabia.

    Related:

    4.2 ‘Assessment of readability, reliability, and quality of ChatGPT®, BARD®, Gemini®, Copilot®, Perplexity® responses on palliative care,’ Medicine (Türkiye). Posted online 16 August 2024. Full text

    4.3 ‘The digital legacy in end-of-life care: Unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers,’ Research Square (Germany). Posted online 14 August 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

    4.4 ‘Virtual reality videos for symptom management in hospice and palliative care,’ Mayo Clinical Proceedings: Digital Health (U.S.). Posted online 10 August 2024. Full text

    4.5 ‘Perceived usefulness of new technologies in palliative care volunteering: Mix methodology study with stakeholders,’ Research Square (Spain). Posted online 10 August 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

    4.6 ‘Debunking palliative care myths: Assessing the performance of artificial intelligence chatbots,’ Indian Journal of Palliative Care (India). Posted online 9 August 2024. Full text

    4.7 ‘Implementation of a digital distress detection system in palliative care: Qualitative data on perspectives of a multiprofessional palliative care team,’ BMC Palliative Care (Germany). Posted online 7 August 2024. Full text

    4.8 ‘Transitional palliative care for family caregivers: Outcomes from a randomized controlled trial,’ Journal of Pain & Symptom Management (U.S.). Posted online 5 August 2024. Full text

Neuropalliative Care

  1. ‘Co-designing a palliative dementia care framework to support holistic assessment and decision-making: The EMBED-Care Framework,’ Health Expectations (U.K.). Posted online 31 August 2024. Full text

    Related:

    5.2 ‘Healthcare utilization at the end of life in Parkinson´s disease: A population-based register study,’ Research Square (Sweden). Posted online 21 August 2024. Full text

    N.B. This is a preprint; it has not been peer reviewed by a journal.

    5.3 ‘Neuropalliative care needs checklist for motor neuron disease and Parkinson’s disease: A biopsychosocial approach,’ Indian Journal of Palliative Care. Posted online 14 August 2024. Full text

    N.B. Contributing authors from India and the U.K.

    5.4 ‘Estimating the escalating future need for palliative care among people living with dementia,’ Palliative Medicine (U.K.). Posted online 12 August 2024. Full text

    5.5 ‘People with dementia and family carers are welcoming of a model of dementia palliative care, but sceptical of its implementation,’ Dementia (Ireland). Posted online 9 August 2024. Full text

    5.6 ‘Palliative care needs and utilisation of specialist services for people diagnosed with motor neuron disease: A national population-based study,’ BMJ Open (China). Posted online 8 August 2024. Full text

    5.7 ‘Enhancing skills in serious illness communication in neurology residents using simulation: A pilot study,’ Neurology Journal (U.S.). Posted online 6 August 2024. Full text

Website Posting of Interest: ‘Influencing policy on better palliative care for people with dementia,’ King’s College London (U.K.), 13 August 2024.

News Media Report of Interest: ‘More people are dying from dementia, according to new study,’ ABC News (U.S.), 14 August 2024.

Oncology

  1. ‘Treatment classification by intent in oncology – the need for meaningful definitions: Curative, palliative and potentially life-prolonging,’ Journal of Personalized Medicine (Romania). Posted online 31 August 2024. Full text

    Related:

    6.2 ‘Preserving the integrity of personhood in people with advanced cancer: An in-depth qualitative study among patients, relatives, and care professionals,’ Palliative Medicine (Germany). Posted online 16 August 2024. Full text

    6.3 ‘Integrating health equity in the American Society of Clinical Oncology Guideline Agenda: Recommendations from members of the Palliative Care Expert Panel,’ JCO Oncology Practice (U.S.). Posted online 12 August 2024. Full text

    6.4 ‘Early integrated palliative care in patients with advanced cancer: A randomized clinical trial,’ JAMA Open Network (Korea). Posted online 8 August 2024. Full text

Website Posting of Interest: ‘Bring Care Closer,’ Canadian Cancer Society (Canada), 7 August 2024.

Palliative Care & Hospital Spaces

  1. ‘Expectation, emotion and the built environment: experiences of occupying hospital spaces as a loved one nears the end of life,’ Medical Humanities (Australia). Posted online 31 August 2024. Full text

Cultural & Linguistic Diversity

  1. ‘Lived experiences of palliative care physicians on the impacts of language and cultural discordance on end-of-life care across Ontario, Canada: A qualitative study using the intersectionality-based policy framework,’ Research Square. Posted online 23 August 2024. Full text

    Related:

    8.2 ‘Somebody who understands the culture and their needs that can cater for them in their retirement time: A peer research study exploring the challenges faced by British Muslims with palliative care needs during the COVID-19 pandemic,’ BMJ Open (U.K.). Posted online 8 August 2024. Full text

Aged, Long-Term & Residential Care

  1. ‘The conveyor belt for older people nearing the end of life,’ Internal Medicine Journal (Australia). Posted online 18 August 2024. Full text

    Related:

    9.2 ‘Always politically correct: Supporting seriously ill older populations and their families,’ Journal of Social Work in End-of-Life & Palliative Care (U.S.). Posted online 12 August 2024. First page view

    9.3 ‘Using palliative care needs rounds in the U.K. for care home staff and residents: An implementation science study,’ Health & Social Care Delivery Research, 2024;12(9). Download National Institute of Health & Care Research report

Palliative Care for the Homeless

  1. ‘Destitute and dying: Interventions and models of palliative and end-of-life care for homeless adults – a systematic review,’ BMJ Supportive & Palliative Care (U.K.). Posted online 17 August 2024. Full text

    Related:

    Website Posting of Interest: ‘Homelessness and palliative care: “Where people are passionate, they can make a change,”’ Marie Curie (U.K.), 6 September 2024.

Desire to Hasten Death

  1. ‘The double awareness of the wish to hasten death and the will to live: A secondary analysis of outlier patients from a mixed-methods study,’ Palliative Medicine (Germany). Posted online 16 August 2024. Full text

Pediatric Palliative Care

  1. ‘Expectations of families of children eligible for palliative care,’ Physis: Revista de Saúde Coletiva (Brazil). Accessed online 16 August 2024. English language abstract (click on pdf icon for full textin Portuguese)

    Related:

    12.2 ‘The practical application of the individual care plan for pediatric palliative care: A mixed-method study,’ Children (The Netherlands). Posted online 11 August 2024. Full text

    12.3 ‘Facilitators and barriers to parent-child communication in pediatric palliative care: An integrative review,’ International Journal of Nursing Sciences (China). Posted online 10 August 2024. Full text

    12.4 ‘“New worlds open up”: A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students,’ Qualitative Research in Health (The Netherlands). Posted online 10 August 2024. Full text

    Website Posting of Interest: ‘New research focus on paediatric palliative care,’ Palliative Care Australia, 5 September 2024.

Critical & Intensive Care

  1. ‘Assessing palliative care practices in intensive care units and interpreting them using the lens of appropriate care concepts: An umbrella review,’ Intensive Care Medicine (India). Posted online 14 August 2024. Full text

    Related:

    13.2 ‘End-of-life care in the intensive care unit,’ Surgery (U.K.). Posted online 10 August 2024. Abstract (w. Section Snippets, References, etc.)

Grief & Bereavement

  1. ‘Parent-clinician communication and prolonged grief in parents whose child died from cancer,’ Journal of Pain & Symptom Management (U.S.). Posted online 12 August 2024. Abstract (w. Introduction, Section Snippets, References, etc.)

Community & Home-Based Palliative care

  1. ‘Experiences of family carers supporting older people within the last year of life in rural and remote areas in the U.K.,’ Age & Ageing. Posted online 9 August 2024. Full text

    Related:

    15.2 Differential effects of an integrated community-based end-of-life support team model for terminally ill older adults on spousal and adult-children caregivers American Journal of Hospice & Palliative Medicine (China). Posted online 8 August 2024. Full text

Website Posting of Interest: ‘Canadians care: How willing and able are Canadians to help those with a life-limiting illness,’ Stats Canada, 28 August 2024.

Dignity at the End-of-Life

  1. ‘Impairments of human dignity at the end of life quantitatively assessed by healthcare professionals: A pilot study from Germany,’ American Journal of Hospice & Palliative Medicine. Posted online 7 August 2024. Full text

Empathetic & Holistic Patient Care

  1. ‘Experiences of patients living in a unique leprosy hospice in Greece: An interpretative phenomenological analysis,’ Cureus. Posted online 7 August 2024. Full text

Website Postings of Interest

Europe

  1. ‘How are hospital services used at the end of life?’ Nuffield Trust (U.K.), 14 August 2024.
  2. ‘I’m an oncologist from India – here’s what I gleaned from a palliative care placement in the U.K.,’ BMJ Supportive & Palliative Care (Forum), 6 August 2024.

Selected News Media Reports

Europe

  1. ‘Palliative care is about so much more than end of life. It should be central to healthcare,’ The Irish Times (Ireland), 18 August 2024.
  2. ‘Inside one hospice’s battle for financial survival as it faces “incoming tsunami” of need,’ Daily Express (U.K.), 12 August 2024.

North America

  1. ‘From fear to empowerment: How palliative care can help,’ Huntsman Cancer Institute (U.S.), 19 August 2024.