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Open research questions in Palliative Care and End-of-Life Issues

111 unresolved questions extracted from the limitations and future-work sections of 2,239 Palliative Care and End-of-Life Issues papers in our library. Each links back to the study that raised it.

What the literature leaves open

  • The original QODD was revised to create the QODD-RGV in order to address previously identified challenges related to missingness, cultural relevance, and applicability across diverse care settings. The goal of revisions was to improve the measure’s applicability across varied resource settings. The QODD-RGV is now undergoing further psychometric evalua- tion at the same hospices in the USA and Canada. Further research on the measure is underway in Malawi and Uganda PLOS One | https://doi.org/10.1371/journal.pone.0353561 July 17, 2026 10 / 12 with translated versions of the measure, to assess relevance, comprehensibility, comprehensiveness, and quantitative measurement properties in culturally distinct populations with varied resource availability. This will provide important opportunities to assess if the QODD-RGV is an applicable and valid measure across diverse settings. The long-term goal is to determine if the QODD-RGV can broadly serve as a measure for assessing the quality of dying and death across varied populations and resource settings, while identifying where further adaptation may be needed. This will enable further research on the utility of the measure in clinical care and as a tool in research across diverse cultural and resource settings to assess clinical care interventions.

    Content validity of the quality of dying and death questionnaire- revised global-version in North American inpatient hospices · 2026 · DOI

  • As a conceptual model, the Death Avoidance Paradox requires empirical validation. Future qualitative studies should explore clinicians' experiences of psychiatric end-of-life care across diverse healthcare settings, while quantitative research should develop and validate measures of the five avoidance dimensions and examine their relationships with communication quality, referral practices, and patient outcomes. Longitudinal studies may further clarify how avoidance develops over time and whether targeted educational and organizational interventions reduce avoidant behaviors and improve the quality of psychiatric palliative care.

    THE DEATH AVOIDANCE PARADOX IN PSYCHIATRIC END-OF-LIFE CARE: A MULTIDIMENSIONAL CONCEPTUAL FRAMEWORK OF CLINICIAN AVOIDANCE · 2026 · DOI

  • Key suggestions for integration Policy + implementation TABLE 4: KII guide - district stakeholders KII: Key Informant Interview; NPPC: National Programme for Palliative Care; ASHA: Accredited Social Health Activist; ANM: Auxiliary Nurse Midwife; MO: Medical Officer; NGO: non-governmental organization; PPP: public-private…

    Integrating Home-Based Palliative Care Into Primary Healthcare in Jodhpur, Rajasthan: Stakeholder-Perceived Barriers, Facilitators, and System Needs · 2026 · DOI

  • Future Research Directions Building on the exploratory nature of this study, further research into Philosophical Counselling in palliative and existential contexts could pursue at least three strategies: (a) A broad-based, mixed-methods survey of guests, combining quantitative and qualitative elements, focused on philosophically grounded qualities and outcomes.

    ‘Stay Curious’: guest experiences of philosophical counselling in palliative care – a qualitative study · 2026 · DOI

  • This review highlights a fragmented and limited evidence base on psychological distress among end-of-life care volunteers. Although qualitative evidence is scarce, it foregrounds potential patient-, interaction- and service- level factors that are rarely examined quantitatively.

    Factors associated with psychological distress among end-of-life care volunteers: a systematic review of quantitative and qualitative evidence · 2026 · DOI

  • This review has several important limitations. While the inclusion of both qualitative and quantitative studies pro- vided valuable insights, substantial heterogeneity in study designs, populations, and outcome measures precluded a meta-analysis. The authors’ conceptual understanding of psychological distress likely influenced study selection and interpretation, and may not fully align with alterna- tive definitions of these constructs. As such, different operationalisations of these concepts could have resulted in different inclusion decisions and interpretations of the findings. The quantitative studies further allowed the identification of associations but not causal relationships. The overall evidence base was relatively limited, with few studies specifically addressing volunteer distress in end-of-life care. Most available research originated from high-income countries, constraining the generalisability of findings to other settings. In addition, some included studies dated back to the 1980s, which may limit the relevance of their findings to contemporary healthcare contexts given changes in professional roles, training, and cultural expectations. Considerable variation in the scope and nature of volunteer roles across settings also made direct comparisons difficult. Finally, while a rigor- ous search strategy was applied, it is possible that rele- vant studies were missed including some identified in an earlier review of end-of-life care volunteers’ experiences [10], which may have affected the completeness of the evidence base.

    Factors associated with psychological distress among end-of-life care volunteers: a systematic review of quantitative and qualitative evidence · 2026 · DOI

  • Conclusion Respect for patient autonomy is a fundamental ethical principle in end-of-life care. This case highlights the challenges that arise when family-centered decisionmaking overrides the preferences of a potentially competent patient. It underscores the importance of timely reassessment of decision-making capacity and direct patient involvement in treatment discussions. Overreliance on surrogate decision-makers may care decisions.

    The Right to Decide: Navigating Autonomy and Cultural Blindness in Critical Care (A short commentary) · 2026 · DOI

  • In light of the study's conclusions, several recommendations are proposed for nursing practice. Healthcare institutions are encouraged to establish structured emotional support programs, including regular debriefing sessions, counseling services, and stress management workshops. Mentorship programs should be strengthened to support novice nurses as they navigate the emotional and ethical challenges of palliative care. Additionally, adequate staffing, proper workload distribution, and sufficient rest periods should be ensured to minimize physical exhaustion and workplace fatigue. ACKNOWLEDGMENTS I would like to express my deepest gratitude to the following individuals for their invaluable support in improving this study. To my SBLC and Graduate School, respectively, for the faith and support they have provided while I complete this journey. AI DECLARATION STATEMENT AI-supported tools helped with grammar and structure in creating this article. No AI tools were used to collect, analyze, or interpret data; all authors are credited for their academic contributions. https://epublications.myeduheart.com/index.php/ijnhha/index 84 INTERNATIONAL JOURNAL OF NURSING, HEALTHCARE AND HOSPITAL ADMINISTRATION VOL. 1 NO. 1 REFERENCES Amante, A. J. E., Awitan, C. D. T., Baesa, K. L. V., Bango, P. U., Bantilan, K. S. T., & Bullecer, E. C. E. (2025). Stress coping strategies in Filipino staff nurses: The role of personality type. Iranian Journal of Health Sciences, 13(3), 195–202. https://jhs.mazums.ac.ir/article-1-1001-en.pdf Bisht, R. (2025). What is purposive sampling? Methods, techniques, and examples. Researcher.Life. https://researcher.life/blog/article/what-is-purposive-samplingmethods-techniques-and-examples Bloomfield, J. G., O’Neill, B., & Gillett, K. (2015). Enhancing nurses communication during end-of-life care: A pilot study. Palliative & Supportive Care, 13(6), 1651–1661. https://doi.org/10.1017/S147895151500022X Chang, S. J., Moon, S., & Lee, N. K. (2025). End-of-life care preparedness and educational needs among nursing staff of long-term care facilities: A cross-sectional study. BMC Nursing, 24, 608.

    Lived Experiences of Staff Nurses in Handling Palliative Care Patients · 2026 · DOI

  • Hospitals were not considered in this research because their primary role in palliative care is to stabilize patients for subsequent discharge to other care facilities. Nev- ertheless, the hospitalization of people without medi- cal insurance is generally a major problem in Germany [53]. This may result in bias due to unplanned hospital admissions. In addition, the extent to which physicians in private practice try to provide free care to uninsured patients at the end of their lives is unknown. The partici- pation rate may introduce bias into the results because only the most committed institutions may provide free care. Participants who agreed to take part in the study may have had a heightened awareness of the circum- stances Finally, due to the descriptive nature of the data, long-term comparisons and comparisons between regions are not possible. The characteristics of the partic- ipants and institutions were not surveyed. The legal form, sponsorship, and size of the participating institutions were not surveyed. The required anonymization resulted in the loss of geographic information. Consequently, an analysis from an economic geography perspective was not possible.

    Palliative care for the people without medical insurance in Germany: an empirical ethical approach · 2026 · DOI

  • This study relied on self-reported data, which may be subject to recall bias and hindsight reconstitution. This may limit the interpreta- tion of any observed changes in attitudes and practices. Additionally, there is no validated measurement tool for this context. The study 5 population was limited to ED in one South African city, Johannesburg, limiting the external validity. The use of a structured quantitative questionnaire, while useful for identifying trends, did not allow for deeper qualitative exploration of factors that may influence decision-making. Furthermore, the study did not control for confounding factors such as institutional protocols, staffing levels, or hospital-specific resource constraints, which may have influenced reported practices.

    The impact of COVID-19 on the knowledge, attitudes and practices of end-of-life care and decision making amongst doctors in South African Emergency Departments · 2026 · DOI

  • Based on the findings of this study, the following recommendations are proposed to improve the availability and practice of palliative care services for cancer management in tertiary hospitals in Anambra State: Policy and Government-Level Recommendations: The Federal and State Ministries of Health should develop and strengthen policies that support the integration of palliative care into routine cancer management and other chronic disease services at all levels of healthcare. Government should increase budgetary allocation for palliative care services to address the major barriers identified, particularly financial constraints and inadequate infrastructure. Palliative care services should be included in the National Health Insurance and other health financing schemes to reduce out-of-pocket expenditure for patients and improve access to care. Institutional Recommendations: Hospital management should establish or strengthen dedicated palliative care units with adequate infrastructure, essential equipment, and medications, including opioids for effective pain management. Healthcare institutions should develop and implement standard protocols and guidelines for comprehensive palliative care to ensure consistency and quality of service delivery. Hospitals should strengthen multidisciplinary collaboration by involving doctors, nurses, pharmacists, social workers, psychologists, and spiritual care providers in palliative care teams. Functional health information and documentation systems for palliative care should be developed to support continuity of care, monitoring, and evaluation. Capacity Building and Training: Continuous professional education and in-service training on palliative care should be organized regularly for healthcare professionals, as this was identified as the strongest into facilitator of improved practice. Palliative care should be fully integrated Vol. 22, No.

    Practice and Factors Influencing Palliative Care Services for Cancer Management in Government Established Hospitals in Anambra State, Nigeria · 2026 · DOI

  • There are limitations to be considered when interpreting the findings of this study. It is a descriptive cross-sectional design, which captures information at a single point in time. As a result, causal relationships between the identified factors and the provision of palliative care services cannot be established. Also, the study relied on self-reported information from healthcare professionals. This may have introduced response bias, including social desirability bias, where respondents could overreport good practices or the availability of palliative care services, as well as recall bias. The study was conducted in only two tertiary hospitals in Anambra State. The findings may not be generalizable to other tertiary hospitals in Nigeria or to secondary, primary, or private healthcare facilities with different levels of resources and organizational structures. There was a disproportionate representation of nurses compared to doctors among the respondents. This professional imbalance may have influenced the overall findings, particularly in areas related to awareness and practice of palliative care. It did not include the perspectives of patients or caregivers, nor did it objectively assess the quality, adequacy, or outcomes of the palliative care services provided. Despite these limitations, the study provides useful baseline information on the status of palliative care services and identifies important gaps that can inform policy, practice, and future research.

    Practice and Factors Influencing Palliative Care Services for Cancer Management in Government Established Hospitals in Anambra State, Nigeria · 2026 · DOI

  • There are limitations to this study. Due to the design of the previous study, we used as a database, screening score, ECOG score and IPOS score were only available for screened patients (n = 206) but not for all included patients (n = 316). Also, the previous study more than one third of the patients needed to be excluded because the questionnaire was incomplete or non-responded [5]. Besides, the diagnoses Benthien and Gaertner used to give their recommendations are not identical, thus patient cases are not congruent. This may have had an impact on the results presented here and should be con- sidered when interpreting the generalizability of the find- ings. Due to the retrospective design of the study, some patient cases had to be excluded or might have had a more precise result if a prospective design was chosen. Also, there is no gold standard tool to define SPC need neither by proxies nor by self-assessment. The standards we chose as indicators (survival, IPOS Score, preexisting contact to PC) are only an attempt to objectively cap- ture the complex concept of SPC need. A SPC physician might be more precise in defining which patient has SPC need. Further research is needed to define and improve more and better instruments to identify patients in need of SPC.

    Comparison of different proxy approaches to determine the need for specialized palliative care in patients with incurable cancer · 2026 · DOI

  • Although evidence is limited there is increasing recognition of the need to improve care for patients with ACLD; however, there are many limiting factors to providing good palliative care for these patients, including unpredictable disease progression, the misconception of palliative care and end of life care as being equivalent, a lack of confidence in prescribing medication and a lack of time and resources.

    Palliative care in terminally ill advanced chronic liver disease patients · 2024 · DOI

  • Future research should explore innovative strategies using quantitative methods to overcome barriers and enhance palliative social work effectiveness across diverse cultural and healthcare contexts, ultimately improving social service delivery to cancer patients and advancing social service research.

    Palliative Social Work Services for Cancer Patients in Southeast Nigeria: An Exploration · 2024 · DOI

  • This gap in knowledge, which limits music therapists' ability to provide patients and caregivers best practices promoting supported movement through the dying process, becomes particularly problematic when assessing patients who are imminently dying with a 24-72 hour prognosis.

    Assessment and Clinical Decision-Making During Imminent Death in Hospice Music Therapy · 2021 · DOI

  • Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB.

    Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study · 2021 · DOI

  • Suicidal ideation occurs in advanced cancer patients with elevated rates of post-traumatic stress disorder, panic disorder, hopelessness, and social isolation, but the mechanisms linking these psychiatric comorbidities to suicide risk in palliative care remain unclear. Longitudinal studies examining the temporal relationship and causal pathways between these psychiatric conditions and suicidal ideation in palliative oncology populations are required.

    Psychiatric conditions in palliative medicine · 2020 · DOI

  • The paper identifies multiple contributing factors for anxiety in palliative patients (breathlessness, sepsis, refractory pain, medication effects, drug withdrawal, delirium), but does not specify the relative prevalence or impact of each factor. Empirical studies quantifying the contribution of each anxiety precipitant in different palliative populations are needed to guide targeted intervention strategies.

    Psychiatric conditions in palliative medicine · 2020 · DOI

  • Almost 50% of palliative patients cared for at home experience moderate to severe symptoms of anxiety and/or depression in the last week of life, yet specific psychological interventions tailored to end-of-life anxiety and depression management have not been systematically evaluated. Research is needed to develop and validate evidence-based psychological symptom management protocols for the final week of life in palliative care.

    Psychiatric conditions in palliative medicine · 2020 · DOI

  • Evidence on the effectiveness of pharmacological agents for anxiety in palliative care patients is lacking. Randomized controlled trials specifically assessing the management of anxiety in palliative care are required to establish the comparative risks and benefits of benzodiazepines, SSRIs, and neuroleptics in this patient population.

    Psychiatric conditions in palliative medicine · 2020 · DOI

  • Analysis of 95 peer-reviewed and gray literature documents reveal a scarcity of data on palliative care needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting palliative care as part of humanitarian healthcare response, and the importance of contextually appropriate care.

    Palliative care in humanitarian crises: a review of the literature · 2018 · DOI

  • Conclusion and interpretation: Staff training to enhance understanding and facilitate the timely use of the PC-NAT is warranted as well as to enhance response to unmet needs as part of routine care needs assessment tool.

    Routine assessment of unmet needs in individuals with advanced cancer and their caregivers: A qualitative study of the palliative care needs assessment tool (PC-NAT) · 2017 · DOI

  • The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation.

    Palliative and end-of-life care in prisons: a content analysis of the literature · 2014 · DOI

  • Despite clinical experience that suggests a high burden of care among relatives of individuals with a primary malignant brain tumor (PMBT), little is known about their actual needs.

    Psychosocial Care for the Caregivers of Primary Malignant Brain Tumor Patients · 2013 · DOI

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111 open questions have been extracted from the limitations and future-work passages of 2,239 Palliative Care and End-of-Life Issues papers in our library. Each one below links back to the study that raised it, so you can read the original claim in context.

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