Palliative Medicine

There is growing demand for home-based palliative care because of patient preference, and increased number of deaths. Optimal models for community-based palliative and end-of-life care are unknown.

To identify, synthesise and describe review-level evidence to better understand models of palliative and end-of-life care for adults living at home, and examine components of these models and their association with outcomes.

Systematic umbrella review, using key concepts established a priori from Firth et al. and Brereton et al.’’s model descriptions. Quality assessment used AMSTAR-2 or equivalent.

MEDLINE, EMBASE, CINAHL, Cochrane Database, Epistemonikos (inception – 2024), supplemented by CareSearch, PROSPERO and citation searches.

From 6683 initial papers, n = 66 reviews were included. Seven models of care were identified; by setting (in-home, outpatient); type of professionals (specialist, integrated, non-specialist); or mode (telehealth, education/training). Components included: holistic person-centred assessment, skilled professionals, access to medicines/care/equipment, patient/family support, advance care planning, integration of services, virtual/remote technology and education. We categorised outcomes into: (i) patient outcomes, (ii) family/informal caregiver outcomes, (iii) professional outcomes and iv) service utilisation/cost outcomes. The ‘in-home palliative care’ model was most researched with good evidence of positive benefit. Specialist and integrated models of care were next most researched, with evidence of improved patient and service utilisation outcomes. Cost-effectiveness evidence was lacking.

This meta-level evidence supports provision of in-home palliative care, with most review level evidence showing positive effect on patient outcomes. There was also evidence to support specialist palliative care and integration of primary palliative care with specialist support.

Nova Scotia (NS) Paramedics have been provided with palliative care training, allowing for care at home without the requirement of transport to the emergency department. It is largely unknown if rural populations have different experiences with paramedic palliative support services (transport vs no transport assessed/treated).

The aim of this research was to describe differences between Paramedics Providing Palliative Care in rural versus urban settings, specifically paramedic call characteristics (reason, level of responder) and outcome (transport, non-transport), challenges, and benefits.

A mixed methods study including triangulation of: (1) quantitative analysis of paramedic responses for patients of the palliative care program, (2) qualitative interviews with paramedics, and (3) mailed survey for patients/families. Quantitative data were analyzed descriptively and comparative thematic analyses for the qualitative data.

Participants were the providers and user of the Paramedics Providing Palliative Care at Home Program in Nova Scotia, Canada.

A total of 5697 calls for palliative care were received from 3008 individuals, 72% of rural calls resulted in hospital transport compared to 64% in urban communities (p = 0.024). Paramedics described challenges of older rural homes having less accessible layouts and trip hazards, and themselves as the connection point for the health system.

Rurality has an impact on the use and call outcomes for patients receiving paramedic palliative care. Rural areas have fewer resources to support remaining home, structural barriers, and strong connection to home and community. Paramedics play an important role in rural access to palliative care.

Advance care planning for those with treatable but not curable cancer is considered good practice because innovations in treatment options make prognostication much more uncertain. Little is known about how such patients approach future planning.

To elicit the perceptions and understandings of advance care planning by patients with treatable but not curable cancer.

Qualitative, in-depth interviews with patients were analysed using a reflexive thematic approach within a social constructivist paradigm.

Twenty patients with treatable but not curable cancer were recruited to the study from a cancer care centre. Nine patients choose to be accompanied by family members.

Four integrated themes highlighted that increasing availability of on-going and novel treatments, with survival beyond initial prognosis, impeded advance care planning and contributed to a sense of uncertainty. Participants described the existential difficulty of holding contradictory thoughts about living with cancer while simultaneously contemplating end of life preferences. Most participants did not recognise conversations with clinicians as advance care planning, including ‘do not resuscitate’ decisions. Most participants preferred to discuss future care, social and funeral arrangements with family. A few, with caring responsibilities, proactively undertook advance care planning.

This study highlights challenges in advance care planning for those with treatable but not curable cancer, especially when uncertain about disease progression. Data suggest that a separation between conversations about medical planning and that of a more social and personal nature may be needed. Further research should investigate the impact of uncertainty of survival on advance care planning practice.

End-of-life care delivery is shaped by subject matter experts who influence treatment decisions, policies, and programs and set guidelines that inform end-of-life care practices. However, little is known about what these experts view as most important when delivering high quality end-of-life care.

To quantify the relative value that experts place on 13 key indicators of care quality at end-of-life and to assess whether preferences vary across high- and low/middle income countries.

Cross-sectional survey using a discrete choice experiment that asks respondents to trade-off between three hypothetical care providers with varying ratings across indicators, based on a five-star rating system. Mixed logit regression analysis was used to estimate the relative importance for each indicator, such that the sum across indicators totals 100%.

A total of 193 experts from 121 countries.

Experts placed greatest relative importance on managing pain and discomfort (19.0%), quality of life extending treatments (10.0%), treating patients kindly (9.1%), and ensuring costs are not a barrier to treatment (8.7%). They placed least emphasis on non-medical concerns (3.7%) and spiritual needs (2.2%). No differences were found between respondents from high- and low/middle income countries.

These results reinforce the importance of pain management as the most important indicator of end-of-life quality. Results further suggest that excessive emphasis on life extension may not be the best use of scarce resources and greater value may be achieved by focusing on other aspects of end-of-life care quality. These results hold for both high- and low/middle income countries.

Improving support for unpaid carers is a policy priority internationally, yet there are few reliable population estimates on numbers of end of life carers, and little is known about the demographic characteristics of this group.

(1) Estimate the number of unpaid end of life carers in the UK; (2) Describe demographic characteristics of this group.

An observational study using data from the UK Household Longitudinal Survey (Understanding Society), Health Survey for England and the Office for National Statistics to estimate the number of end of life carers in the UK. Understanding Society was used to explore characteristics of end of life carers including poverty before and after bereavement.

Understanding Society collects annual data on around 40,000 households in the UK, including carers.

Data from Understanding Society suggests there are 150,000–180,000 unpaid end of life care in the UK each year, while data from Health Survey for England suggests a higher estimate at 570,000–775,000 carers. End of life carers are more likely to be older and female. There is an increase in the percentage of carers falling into poverty one year after they provided care.

These analyses have provided the first estimate of the number of end of life carers in the UK, using methods which are replicable in other countries. Our data provide a useful benchmark both for the UK and for other comparable high income countries. Many end of life carers are living in poverty, including after bereavement, showing a need for policy initiatives to provide support.

High-quality recommendations require rigorous methods based on strong evidence to improve clinical practice. In palliative and end-of-life care, expert consensus is sometimes achieved through nominal group techniques. However, its practical challenges are often underestimated, potentially compromising the rigour and the quality of the recommendations.

The methodological reflections on developing recommendations using the nominal group technique are discussed in this paper. These reflections are drawn from its theoretical foundations and applications in palliative care research, including a Taiwanese study on preparing families for a relative’s death. We highlight key issues such as the omission of pilot meetings and the underestimation of practical challenges in conducting group meetings, including time constraints and real-world uncertainties, especially during the stages of listing, clarifying, voting and ranking recommendations. Cultural factors are often overlooked, as seen in the example study, where the moderator avoided interruptions to show respect and politeness during the meeting. Additionally, valuable data gathered during meetings is often underutilised. These factors collectively can undermine the quality of recommendations. Based on these insights, we offer suggestions for improvement.

Pilot meetings should be conducted and reported to demonstrate how they inform the main meeting, ensuring research rigour and recommendation quality. Sufficient time should be allocated for listing and clarifying recommendations and in societies with specific etiquettes (e.g. minimising interruptions to show politeness). Further qualitative analysis of meeting transcripts is suggested to better understand the context and rationale behind the recommendations and enhance their applicability and clarity.

Research evidence is fundamental to informing clinical decision-making and advancing palliative care practice. Although academic, peer-reviewed journals underpin evidence-based healthcare, they represent only part of the knowledge landscape. Incorporating grey literature from sources outside traditional academic publishing can: provide context, balance and diverse perspectives; address knowledge gaps; and mitigate publication bias. However, its decentralised and dispersed nature can pose challenges for researchers unfamiliar with its scope and diversity.

To present a flexible framework comprising 12 elements to support researchers in systematically identifying and locating grey literature relevant to palliative care across a broad range of sources. The framework accommodates variation in research focus, available resources, and context. Practical guidance is also provided for reporting grey literature searches with the transparency required in systematic reviews.

The framework was developed through expert consensus, informed by the authors’ collective experience in systematic review methodology, grey literature searching, and information retrieval. It has been iteratively refined through teaching and real-world review projects. Each included source was assessed for its depth and breadth of palliative care content.

The 12-element framework supports palliative care researchers in planning and executing searches across a wide range of fit-for-purpose sources. Practical examples are provided alongside a classification of grey literature source types.

This framework offers structured yet adaptable guidance to support more consistent grey literature engagement. Persistent challenges include defining search boundaries, managing duplication, record-keeping, and assessing quality. Future research should explore the framework’s utility across diverse review types and palliative care research priorities.