Open research questions in Palliative Care and End-of-Life Issues
816 gap statements mined from Palliative Care and End-of-Life Issues papers in our 7.9M-paper local library, which holds 7,118 papers on the topic — drawn mostly from each paper's own stated research gap, future-work, challenge and limitation notes, and its abstract. The ones listed below are a selection still marked open; each names the study that raised it, with a DOI link where the paper has one.
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What the literature leaves open
Individual related barriers refer to the unique personal, family and staff factors that may hinder equitable access to palliative care and bereavement support. Restricted communication and poor understanding or awareness of available services are common barriers. The lack of centring on the perspectives of population groups experiencing inequity is a limitation.
Inequity in palliative care and bereavement support: an umbrella review of the evidence · 2026 · DOIThe lack of centring on the perspectives of population groups experiencing inequity is a limitation. Most existing research has captured the needs and experiences of populations facing inequity indirectly, rather than through self-reported, meaningful, first-hand engagement.
Inequity in palliative care and bereavement support: an umbrella review of the evidence · 2026 · DOIHowever, challenges in end-of-life care practice persist in such settings, and associated factors remain underexplored.
Factors Associated With End‐of‐Life Care Practice in Nonspecialist Palliative Care Settings: A Capability–Opportunity–Motivation Perspective · 2026 · DOIAlthough previous studies have focused largely on professionals and informal caregivers, patients' own perspectives remain insufficiently understood.
Living the transition: Experiences of patients receiving palliative care from hospital to home – A phenomenological study · 2026 · DOIFor Parkinson's disease (PD) and atypical parkinsonism (AP), ACP is particularly important because of disease complexity, symptom burden, the progressive nature of the disease, and cognitive decline, yet its implementation across care settings remains unclear.
Charting the future: A multi-setting medical chart study of advance care planning in Parkinson's disease and atypical Parkinsonism · 2026 · DOINo studies have explored the appropriateness or timing of discussions of PC and planning for future medical needs at the transplant center with patients for whom transplant is not an option.
“Leave a Little Ray of Hope”: Perspectives From Providers, Patients, and Caregivers on Palliative Care and Future Health Care Planning for Patients Ineligible for Kidney Transplantation · 2026 · DOIFuture research should focus on developing measures of complex need for palliative care for children with life-limiting conditions, as well as inclusive and appropriate interventions to address disparities.
How many children have palliative care needs and which of them are less likely to be actively seen by services? A cross-sectional analysis of survey data · 2026 · DOIAdvancements in technology have the potential to support home-based care, yet little is known about children's own communication needs, their views on home-based care and the possibilities of technology to support communication.
Communication, everyday life and technology from the perspectives of children with life-limiting or life-threatening conditions: a qualitative study · 2026 · DOIIn Côte d’Ivoire, cancers are often diagnosed at advanced stages, yet data on healthcare staff preparedness are scarce.
Connaissances, Attitudes et pratiques des Professionnels de Santé sur les Soins Palliatifs à Abidjan et Bouaké : Une Étude Transversale de 58 Soignants · 2026 · DOIResidents may not develop skills adequately, and little is known about how they learn those that they do have.
Discovering What Works Well: Exploring Primary Palliative Care Education in Pediatrics Residency Programs in Canada · 2025 · DOIPwPs were infrequently referred to PC services, and while several referral criteria were identified, no consensus emerged.
Early thinking palliative care for people with Parkinson's disease: A thematic synthesis based on a systematic mixed-methods review · 2025 · DOIBarriers to accessing PC included insufficient information, inadequate education, difficulties determining referral timing, limited home-based care options, inconsistent provider support, and disparities linked to socioeconomic and cultural factors.
Early thinking palliative care for people with Parkinson's disease: A thematic synthesis based on a systematic mixed-methods review · 2025 · DOILevel and increase in symptom severity did not improve over time for both cancer and non-cancer decedents, suggesting that improvement of palliative care is warranted for both groups.
There is evidence of socioeconomic inequality in palliative and end-of-life care, yet little is known about how pain might differ according to financial status.
Financial status and pain in the last week of life: Insights from a nationally representative mortality follow-back survey in England and Wales · 2025 · DOIDespite this inescapable truth, the management of dying patients in acute care environments remains remarkably underexplored in research and education, especially when compared to life-extending interventions.
Further external validation in diverse populations and healthcare settings is warranted to confirm its generalisability.
Development, validation, and clinical utility of a risk prediction model to identify older women with dementia for proactive palliative care · 2025 · DOIFuture research should focus on identifying areas for further development and assessing its impact on palliative care outcomes.
Co-design of the Intelligent HOme-based Palliative care for End-of-life system: A development and feasibility study · 2025 · DOIThere is a lack of evidence to support implementation, particularly for families after an expected child death.
Child death review: understanding variations in practice using normalisation process theory · 2025 · DOIHowever, the reasons patients willingly withdraw from elective dialysis under varying disease prognoses, and the factors that influence these decisions, remain unclear.
Exploring Willingness: What Drives Dialysis Withdrawal Decisions in Patients With End-stage Renal Disease? A Cross-sectional Study · 2025 · DOIWhile there is growing emphasis on integrating palliative care for patients with HF, limited data exist on the locations where adults with HF spend their final days.
Until now, the use of their emotions during palliative care consultations has remained understudied.
Although occupational therapists have well-established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities.
Exploring the role of palliative care occupational therapists in supporting compassionate communities in end‐of‐life care · 2024 · DOIThis paper aims to address this gap in knowledge by exploring the experiences of rural generalist occupational therapists in the provision of palliative care in rural, regional, and remote Australia.
The experiences of rural generalist occupational therapists in provision of palliative care in rural, regional, and remote Australia: A phenomenological inquiry · 2024 · DOIIt is difficult to estimate palliative care needs in this population, and few studies have explored the characteristics or service use patterns of this group.
How many children have palliative care needs and which of them are less likely to be actively seen by services? A cross-sectional analysis of survey data · 2026 · DOIDespite their significant contributions to palliative home care, caregivers' efforts are often underrecognized and underutilized.
Experiences, coping and caregiver well-being for caregiving Thai family members with metastatic spinal cancer for palliative home care: A descriptive qualitative study · 2025 · DOI
Most-cited papers in Palliative Care and End-of-Life Issues
- Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer · New England Journal of Medicine · 2010 · 6,392 citations
- A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators · JAMA · 1995 · 2,768 citations
- Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment · JAMA · 2008 · 2,420 citations
- Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers · JAMA · 2000 · 2,052 citations
- Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer · JAMA · 2009 · 1,531 citations
- Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial · The Lancet · 2014 · 1,530 citations
- Family Perspectives on End-of-Life Care at the Last Place of Care · JAMA · 2004 · 1,237 citations
- Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report · The Lancet · 2017 · 1,143 citations
- Redefining Palliative Care—A New Consensus-Based Definition · Journal of Pain and Symptom Management · 2020 · 1,086 citations
- Association Between Palliative Care and Patient and Caregiver Outcomes · JAMA · 2016 · 1,048 citations
Most recent work
- The global need for paediatric palliative care: the evolution of serious health-related suffering in children aged 0–19 years from 1990 to 2023 · The Lancet Child & Adolescent Health · 2026
- Palliative Care Intervention for Patients With End-Stage Liver Disease · JAMA Internal Medicine · 2026
- Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life · Pediatric Critical Care Medicine · 2026
- ASN Kidney Health Guidance on Conservative Management in People with Kidney Failure · Journal of the American Society of Nephrology · 2026
- Paediatric palliative care and paediatric euthanasia: clarifying a moral continuum · The Lancet Child & Adolescent Health · 2026
- EAPC White Paper: What are the priorities for Public Health & Palliative Care research in the coming decade? Results from an International Delphi study · Palliative Medicine · 2026
- Gastrointestinal and Breast Cancer Survivor’s Unmet Needs During Survivorship Journey: A Reliability and Validity Study · Journal of Nursology · 2026
- The End of Life With Dementia in Asian Countries: Barriers, Facilitators and a Research Agenda for Advancing a Palliative Approach · Journal of the American Geriatrics Society · 2026
- Nurses’ Experience in Providing End-of-Life Care in Intensive Care Unit: A Scoping Review · Healthcare · 2026
- Balancing perspectives: a critical reflection on autonomy, respect and communication in end-of-life choice-making processes · BMC Medical Ethics · 2026
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