Existing evidence demonstrates the benefits of integrated palliative care for people with cancer and their carers, for improved symptom burden, quality of life and appropriate healthcare resource use. The integration of palliative care and oncology has the potential to improve the quality of life and is recommended by international guidelines. However, it is not yet consistent practice. There are many approaches to integration, but it is unclear what works, for whom and in what contexts to achieve the best possible outcomes for people with cancer, carers and healthcare systems. To conduct a realist synthesis to develop a programme theory of how integrated palliative care in cancer works, for whom and in what contexts to achieve improved symptom management and increased quality of life for people with cancer and their carers. To use the programme theory to coproduce, with stakeholders (e.g. patient and public involvement representatives, local, national, international content experts and multidisciplinary practitioners), guidance to inform delivery of best practice and guide future research. Realist review, conducted in accordance with Realist and Meta-narrative Evidence Synthesis: Evolving Standards. Evidence was identified through systematically searching academic databases and through stakeholder engagement. Data were extracted from included articles and were synthesised using a realist logic of analysis to develop explanations of how and why integrated palliative care in oncology works, for whom and in what contexts. One hundred and sixty-four papers from 33 countries were included in the review. Integrated palliative care and oncology could improve people with cancer's outcomes, increase the goal-concordance of care and support workforce well-being. Interventions to support integration should be tailored to the context in which they are delivered. Ensuring the timely delivery of palliative care for people with cancer requires integration that overcomes siloes between oncology, specialist palliative care and primary and community care. The motivation to prioritise the integration of palliative care relies upon all stakeholders first understanding its value. Enriched interdisciplinary collaboration involves developing confidence in their own and their colleagues' skillsets, facilitating co-ordination between care settings and supporting communication within and between teams. Supportive leadership could promote an institutional culture of acceptance of the value of integrating palliative care into oncology management. The realist approach to analysis means that findings are based on our interpretation of the data. To manage the high volume of studies, we limited inclusion to documents published since 2010, using qualitative, mixed or economic methods; therefore, we may have excluded relevant documents. The success of integration is influenced by the ways in which palliative care is understood, prioritised, operationalised and measured within oncology. Through the synthesis of international evidence, this project draws on implementation science to contribute clarity on how integrated palliative care and cancer care can be achieved in practice. Future work should use the implications and recommendations to initiate and optimise palliative care in oncology management. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR152115. There are currently 3 million people living with cancer in the United Kingdom. To better meet the needs of people living with cancer and their carers, it is recommended that cancer care (oncology) is brought together with palliative care. This is described as ‘integration’. Research shows that palliative care is helpful for people with cancer, especially when they have access to it at the right time. Although there is evidence that people do better when there is integration, it is difficult to do this in practice. We aimed to understand the best ways for palliative care and cancer care to work together. We used a type of literature review called a ‘realist synthesis’ and worked with expert stakeholders. The stakeholders involved 17 people who have experience where palliative care and cancer care work together, and 4 members of the public who have been patients, or carers for patients. We explain how the success of integration is affected by the ways in which palliative care in cancer is understood, prioritised, delivered and measured. We recommend taking action to address the misunderstandings about palliative care both in health care and the wider community. Addressing community understandings of palliative care could enable openness to early integration, alleviating fears through more accurate knowledge of what it does and does not involve. The different professionals involved in making changes need to understand why integration of palliative care with cancer care is important. Teams within and across different care settings need more opportunities to talk to each other and to collaborate when they are caring for people with cancer. They need to involve the person with cancer and their carers in decision-making and assess the overall benefits of integration. Bringing palliative care and oncology together could help to provide care which integrates and supports family, community and society.
Carers are individuals who provide unpaid care to family members and friends with disabilities, medical conditions, mental illness, or who are frail and aged. The contribution of carers to the Australian health, aged care, disability, and social care systems is significant. However, they face high levels of emotional, social, physical, and financial burdens. The Australian Government has recently introduced policy reforms to improve recognition of carers. However, there is limited evidence on research priorities to facilitate the translation of policies into practice. To involve Australian stakeholders to a) identify evidence gaps and research needs; and b) set research priorities for carers within the context of ageing, palliative care and end of life. Stakeholder consultation study for research priority setting. Australian stakeholders with expertise in areas related to carers, aged care, and palliative care were engaged through an online survey, a research roundtable and a focus group to discuss research priorities for carers. The survey qualitative responses, notes from the roundtable, and focus group transcript have been summarised and analysed thematically, using NVivo 14 qualitative software. Two main considerations as found from the study are 'what to research' and 'how to research' to improve recognition and support of carers in Australia. Research priorities identified include recognition and early identification of carers, timely and equitable access to support services, helping carers navigate services, support during the transition of care, post caring, including grief and bereavement support, evaluation of existing services, and carer self-care and wellbeing. Participants commented on the importance of research that engages carers meaningfully, respectfully, and in a timely and flexible manner to ensure maximum impact. This study guides the design of carer-centred research to facilitate the translation of carer policies into practice. It also assists in evaluating the effectiveness, cost-effectiveness and sustainability of existing and new support services. Unpaid carers are individuals who help a family member or friend with a disability, medical condition, including terminal or chronic illness, mental illness, or are frail and aged. In Australia, carers play a critical role in providing care, and they make significant contributions to health, care and social care services. There are many programs to support carers, but carers still have problems accessing the right support services at the right time. They also lack the support they need to maintain their own health and wellbeing. To improve carer policy, it is important to look at research that helps put policy into practice in real-life situations. This study, aimed to give participants, including carers, a voice to help identify and shape future research that could make a difference in the lives of carers. The main areas of research priorities identified in the study are recognition and early identification of carers, timely and equal access to support services, helping carers to navigate support services, carer support during the transition of care, post caring, including grief and bereavement support, evaluation of existing support services, and carer self-care and wellbeing. Carers are diverse, and it is important that support services are culturally sensitive and support the cultural and individual needs of carers. It is also important that carers are involved in research design, implementation and evaluation. The study will inform future research and strengthen research that impacts carers.
Dying in the preferred place is associated with improved wellbeing. Preferences may be shaped by personal characteristics, health, prior experiences, and understanding of palliative care. To investigate preferences for place of end-of-life care and death in the Swedish adult population and specifically, to identify subgroups characterised by different understanding of palliative care and examine how preferences vary across these subgroups. This study was based on a cross-sectional population-level survey. A simple random sample of 3,750 16-90-year-old individuals, selected from the Swedish Population Register. Latent class analysis identified distinct subgroups based on participants' understanding of palliative care. Predictors of subgroup membership were examined using multinomial logistic regression. A total of 1,752 individuals responded (48%). Of them, 59.6% preferred end-of-life care at home, and 54.2% preferred home death. Latent Class Analysis identified five distinct subgroups: comprehensive understanding, some understanding, limited understanding, misunderstanding, and no opinion. Comprehensive understanding, such as believing that palliative care supports families and alleviates suffering, was associated with preferences for home or hospice care. Misunderstanding, such as believing that palliative care hastens death, was associated with preferences for hospital or nursing home. The comprehensive understanding group included more women (57.6%), older (mean [SD] age: 57 [18] years), and university-educated individuals (48.2%). Although the most preferred place for both care and death were home, preferences varied across subgroups defined by differing levels of understanding of palliative care and sociodemographic characteristics. Why was the study done? Where people spend their final days of life, whether at home, in hospital, or elsewhere can affect their wellbeing at the end of life. Many things influence people’s preferences for place of end-of-life care and death, including their understanding of palliative care. The researchers wanted to understand where adult people in Sweden prefer to receive care and die. They also wanted to identify groups with different levels of understanding of palliative care and see how their preferences vary. What did the researchers do? They sent a survey to a random representative sample of adults across Sweden. The survey asked about preferences for where they would like their end-of-life care and death to take place, and how much they understood about palliative care. Using a statistical method, the researchers grouped people based on their understanding of palliative care. They then examined which personal characteristics were distinct for each group. What did the researchers find? Out of 3,750 people contacted, 1,752 responded (48%). Most people preferred care (59.6%) and death (54.2%) at home. Five subgroups were identified based on how people understood palliative care: (1) comprehensive understanding; (2) some understanding; (3) limited understanding; (4) misunderstanding; and (5) no opinion. People with comprehensive understanding were more likely to be women, slightly older, and with university education. A good understanding (e.g., recognising that palliative care reduces suffering and supports families) was linked to preferences for home or hospice care. Misunderstandings (e.g., thinking palliative care hastens death) were linked to preferring hospital or nursing home care. What do the findings mean? Although home was the most preferred place for care and death, preferences differed based on their understanding of palliative care and their personal characteristics.
Palliative care access remains limited in Lebanon, particularly outside the capital. Data on public palliative care knowledge and perceptions in general and among disadvantaged populations remain insufficient. This study aimed to assess palliative care awareness and knowledge among community users of a non-governmental organization serving socioeconomically disadvantaged populations in Tripoli, north of Lebanon. A cross-sectional study was conducted using a structured survey targeting 400 individuals using the Palliative Care Knowledge Scale (PaCKS) in the colloquial Arabic language. Data on palliative care awareness and background information were collected. Multivariable binary logistic regression using stepwise backward selection was conducted to identify predictors associated with palliative care knowledge levels and common misconceptions. Low awareness of palliative care was observed, with 95.8% of participants reporting never having heard of it. PaCKS's mean score was 9.24 ± 2.89; 40.8% (N = 163) had high scores (11-13), 42.8% (N = 171) had moderate scores (7-10), and 16.5% (N = 66) had low scores (0-6). Common misconceptions included perceiving palliative care to be limited to hospital care, to cancer, and to end of life. Higher educational attainment was a strong and stable predictor of palliative care knowledge and common misconceptions. Participants with middle or high school education had 1.754 higher odds (p = 0.013), and those with university education had 4.938 higher odds (p < 0.001) for higher knowledge compared to participants with no or primary education, potentially indicating a graded association. More than half of the participants expressed interest in having information about palliative care made generally available. Our results indicate low awareness and several misconceptions about palliative care along with the presence of health inequities. Low educational attainment, mainly linked to socioeconomic disadvantage, may limit health literacy, and as such, reduce access to information and the ability to understand complex concepts such as palliative care. These findings highlight the urgent need for a collaborative, multi-sectoral system-thinking, community-centered, and equity-driven approach that involves the community, researchers, healthcare providers, and policymakers. Awareness and knowledge of palliative care in Tripoli, Lebanon: Insights from disadvantaged communities Why was this study done? In Lebanon, people have limited access to palliative care services. There is insufficient information on the knowledge and awareness of palliative care among laypeople including disadvantaged communities.We conducted this study to understand how much people using the services of a non-governmental organization in Tripoli, north of Lebanon, know about palliative care and what common misconceptions they have. What did the researchers do? We administered a survey in the colloquial Arabic language by trained interviewers. We looked at the knowledge scores and examined whether information such as education, age, gender, and others influence the level of knowledge of participants. What did the researchers find? Our study found that most participants never heard of palliative care before. Although they had good palliative care knowledge, almost half of them thought that palliative care is limited to hospitals, cancer, and end of life.Participants who had no school education or completed primary education were more likely to have lower knowledge and more misconceptions about palliative care compared to those who completed high school or university education.Participants were interested in knowing about palliative care even in the absence of a serious illness. What do the findings mean? Our findings indicate that participants have limited awareness and several misconceptions about palliative care, especially among those who have lower education, making them less likely to access correct information and palliative care services when they need it.Interventions should focus on engaging communities as equal partners to improve palliative care awareness and access, with collaboration between researchers, healthcare professionals, and policymakers.
The Advanced Palliative Hospice Social Work Certification (APHSW-C) is the first exam-based credential to define and objectively verify standardized competencies for palliative and hospice social workers in the United States. As the certification reaches its first five-year milestone, little is known about how certificants perceive its professional value, impact on professional identity, and recognition by healthcare institutions. To examine how those holding the APHSW-C perceive the certification's impact on their professional identity, interprofessional recognition, institutional support, and career development. A cross-sectional, mixed-methods survey was distributed electronically to all APHSW-C holders (N=844) via the Hospice and Palliative Credentialing Center and supplemented by a single listserv posting. The survey instrument included closed-ended items assessing motivations, employer recognition, perceived benefits, exam perceptions, and renewal intentions; open-ended items captured narrative reflections on certification impact. Quantitative data were analyzed descriptively; qualitative responses were thematically coded by three reviewers and integrated with quantitative findings during interpretation. A total of 178 certificants responded (21% response rate). Most pursued certification to validate their advanced expertise (94%) and support the professionalization of palliative social work (76%). Respondents reported stronger professional identity and greater interdisciplinary credibility. Employer recognition was variable; fewer than one-third received reimbursement for exam fees, fewer than 20% reported salary increases, and 27% reported no formal recognition. Despite this, two-thirds (67%) planned to renew, citing professional identity and commitment to the field, while those uncertain cited limited institutional benefit, financial burden, or changing career circumstances. Qualitative themes reinforced that certificants view the APHSW-C as both a symbol of advanced practice and a mechanism for advocacy and interprofessional parity, though a persistent gap between professional value and organizational reward was noted. The APHSW-C is perceived by certificants as a meaningful validation of specialty expertise that strengthens professional identity, credibility, and interprofessional standing. However, limited and inconsistent institutional recognition remains a significant barrier, particularly regarding financial support, salary incentives, and career advancement. Realizing the credential's full potential requires aligned action from healthcare organizations, professional associations, educators, and policymakers to formally recognize, reward, and integrate the APHSW-C into workforce structures, reimbursement pathways, and career-ladder frameworks. Social workers are key members of hospice and palliative care teams, supporting patients and families as they face serious illness, difficult decisions, and emotional stress. In many healthcare professions, certification is used to demonstrate advanced training and expertise, but until recently there was no exam-based certification for palliative and hospice social workers. The Advanced Palliative and Hospice Social Work Certification (APHSW-C) was created to address this gap. This study explored how the first cohort of social workers with the APHSW-C view the value of the certification. We surveyed all social workers who had earned the credential since it began to explore their rationale for becoming certified, the impact of the certification on their professional identity, the level of recognition from employers and colleagues, and their plans for renewal. A total of 178 certified social workers completed the survey. Most respondents said they pursued certification to demonstrate advanced skills and knowledge while supporting the professional growth of palliative social work as a specialty. Many reported that certification strengthened their sense of professional identity and increased their credibility within interdisciplinary healthcare teams. They described certification as a pathway to clearly define their expertise and advocate for the importance of their role in palliative care. However, recognition from employers was inconsistent. While some social workers reported symbolic recognition, such as listing the certification in their job title or email signature, few received financial support. About one-third received reimbursement for certification fees, fewer than one in five reported a salary increase, and more than one-quarter reported no formal recognition at all. Despite these challenges, most respondents planned to renew their certification and felt the exam accurately reflected the knowledge needed for advanced palliative and hospice social work practice. Overall, this study suggests that the APHSW-C is meaningful to social workers and supports professional identity and credibility, but greater organizational support is needed to fully realize its potential.
Social homecare workers provide care to enable people to live as independently as possible in their own homes. They play a central role in supporting palliative and end-of-life care but often encounter challenges and can feel disempowered. We aimed to scope the evidence on interventions to support homecare workers' provision of palliative and end-of-life care, and the contextual factors that influence their implementation. Papers were included if they reported primary research of any design, evaluating any intervention supporting homecare workers to provide palliative and end-of-life care. We systematically searched four bibliographic databases and supplemented this with reference chaining and grey literature searching. Using a qualitative content analysis, we deductively mapped data against the four contextual domains of the Practical Robust Implementation and Sustainability Model. We found 13 papers reporting interventions to support homecare workers to provide palliative and end-of-life care, of which only seven described contextual factors that influence their implementation. The most common intervention type was training, and most cited contextual factors related to homecare workers' perspectives of the intervention. Characteristics relating to homecare workers' schedules and agency staff turnover were also described as influencing implementation of interventions. However, few reported the influence of the perspectives or characteristics of managers, people receiving homecare, and families. Only two of the seven papers mentioned the influence of the external environment or infrastructure to promote implementation and sustainability of interventions. The scarcity of evidence on interventions and their implementation is a missed opportunity to support the homecare sector's response to increasing demand for community-based care and reduced hospital deaths. Better understanding of how the workforce can be supported to provide palliative and end-of-life care, in a sustainable way, would help facilitate high-quality care at home for people approaching the end of life. What is the problem? Homecare workers provide support to people in their own homes, which can involve caring for people with life-limiting conditions and those close to the end of their life. However, homecare workers report not having enough support or training to do this. There are different ways to support homecare workers to provide end-of-life care, but we do not know what these are or how they can be applied in practice. What did we aim to do? We aimed to find evidence about different ways to support homecare workers to provide end-of-life care, and how best to apply the support in practice. What did we do? We searched for published research articles and unpublished reports on different websites to find evidence on ways to support homecare workers to provide end-of-life care. Within this evidence, we looked at what factors might influence how to apply support for homecare workers into real-life care. What did we find? We found 13 articles that looked at ways to support homecare workers to provide care to people with life-limiting conditions and those close to the end of life. Of these papers, only seven looked at how best to apply the support in practice. Factors that influenced how to apply the support included homecare workers’ views on the support provided, and different features of homecare agencies (for example, staff turnover). There was little evidence found about the influence of the wider care sector (such as private market forces). What does this mean? There is little evidence on what support there is for homecare workers to provide care for people with high levels of need nearing the end of life, and how we should apply this support in practice. We need more research in this area to better prepare homecare workers and the social care sector for increased demand.
Raising public awareness of palliative care has been identified as a priority within research literature on public health approaches to palliative care and within policy documents from many countries, including Canada. However, there is a lack of clarity about what this entails. To develop conceptual clarity and move from the broad goal of "raising public awareness" of palliative care to more clearly defined outcomes and priorities. Group concept mapping is a participatory mixed methods approach that combines qualitative and quantitative analysis. Trochim's six phases of concept mapping methodology were followed. Convenience sampling was used to invite participation. Participants were asked to brainstorm as many ideas as they wanted in response to the prompt: "Good public awareness of palliative care means . . .." A master list of these ideas was then shared with participants and they were asked to: (1) sort the responses into groups and (2) rate each response on a Likert scale of 1-5 in terms of importance. Statistical analyses were conducted to compile the data into a point map and a range of cluster maps. Participants selected the best-fitting cluster map. Nineteen people participated in the group concept mapping exercise. Eighty-four unique statements were generated in response to the prompt, and participants selected a seven-cluster map as best fitting the data. The seven clusters represent components of good palliative care public awareness and were assigned the following labels: (1) understanding palliative care; (2) knowing how to access palliative care; (3) planning ahead; (4) community support for palliative care; (5) caregivers are supported; (6) comfort talking about death and dying; and (7) palliative care is normalized. As a participatory mixed method, group concept mapping offers a novel approach to providing clarity and supporting action planning. It has been instrumental in refining activities to improve public awareness of palliative care in Alberta, Canada, and may be useful to others undertaking similar initiatives. Addressing these domains is a promising means of improving public awareness, understanding, and ultimately uptake of palliative care. Using group brainstorming to define what good public awareness of palliative care means Why this study was needed: Experts say it is important for people to know more about palliative care – the type of care that relieves the symptoms and stress of living with a serious illness. But what raising awareness of palliative care really means is not clear. What we wanted to do: We did this study to describe in more detail what good public awareness of palliative care actually means. What we did: We asked a group of people to help us by sharing their ideas about what good public awareness of palliative care means. We did this using a method called group concept mapping. -First, the people in our study gave us lots of ideas in response to the question: Good public awareness of palliative care means. . . -Then, they helped sort the ideas into groups and rated how important each one was. -We used this information to create maps (pictures) showing how the ideas were grouped. -The people in our study then chose the version of the map they felt was the best fit. What we found: -Nineteen people took part. -They came up with 84 different ideas. -One map with seven themes (groups of ideas) was chosen. These themes show what the people in our study believe makes up good public awareness of palliative care: 1. People understand what palliative care is; 2. People know how to get palliative care; 3. People plan ahead for future health needs; 4. Communities support people who need palliative care; 5. Caregivers (like family and friends) are supported; 6. People are comfortable talking about death and dying; 7. People see palliative care as a normal part of healthcare. Why it matters: This study helped create a clearer picture of what good public awareness of palliative care actually means. We used the results to help plan our palliative care public awareness project in Alberta, Canada. This study could be useful for people working in other places too. Focusing on these seven themes may help people better understand and get palliative care.
Death literacy refers to the knowledge, skills, confidence, and social capacity that enable individuals and communities to understand and respond to dying, death, and loss, including palliative and end-of-life care. In low- and middle-income countries such as Ghana, access to palliative care remains limited due to under-resourced health systems, poverty, and socio-cultural norms that discourage open discussions about death. Despite growing global interest in death literacy and public health palliative care, there is limited evidence on how these are developed through culturally embedded, community-led approaches in non-Western contexts. To explore how the COMPASS-Ghana participatory intervention shaped community stakeholders' understanding of death, dying, and palliative care, and how stakeholder engagement contributed to culturally relevant and sustainable service development. Qualitative participatory study informed by a Theory of Change framework. Data were generated through three interlinked participatory intervention activities: a stakeholder engagement session involving 37 participants from healthcare, policy, faith-based, philanthropic, and community leadership backgrounds; a Theory of Change workshop with 25 participants; and focus group with 12 nursing and midwifery students. Data from facilitated discussions and participatory mapping were analysed using reflexive thematic analysis. Three interrelated themes were generated: (1) building shared language and awareness around death, (2) embedding palliative care within existing community structures, and (3) enhancing collective agency for sustainable care. The intervention supported a shift from viewing death as taboo to recognising it as a shared community concern, increased confidence in discussing end-of-life issues, and highlighted locally grounded strategies to address financial, caregiving, and service access barriers. Death literacy in Ghana emerges as a relational and collective process shaped through dialogue, trusted networks, and community action. Embedding palliative care within community and primary care structures aligns with public health approaches and supports Universal Health Coverage, responding to the World Health Assembly Resolution (WHA67.19). In many parts of the world, including Ghana, people do not have access to the care they need at the end of life. Poor transport, limited health services, and cultural discomfort about talking openly about death can prevent individuals and families from preparing for the end of life. As a result, people often seek help very late, rely heavily on informal or traditional care, and experience unnecessary distress. The COMPASS-Ghana project aimed to address these challenges by working directly with communities, health workers, and local leaders to encourage open conversations about death and dying and to strengthen palliative care. Through community meetings, workshops, and discussions with nurses, doctors, faith leaders, and families, people were supported to understand what palliative care is and how it can help individuals and families. This community led approach helped people feel more confident talking about death, planning ahead, and supporting one another when someone is seriously ill. It also highlighted the importance of palliative care services that are culturally appropriate, affordable, and rooted in community life. The study found that building knowledge and confidence around death and dying—referred to as death literacy—through the COMPASS-Ghana project, involving communities in the design and delivery of care can lead to services that are more meaningful, sustainable, and aligned with people’s values.
The World Health Organization highlights significant disparities in access to palliative care (PC), especially in primary and community care. In France, ASALEE is an innovative national association that brings nurses and general practitioners in primary and community care. Initially created to address the support needs of patients living with chronic diseases, the nurses' roles have expanded to include PC. However, despite the growing role of such interprofessional models, research on PC nurses' activities and skills in primary and community care are underdeveloped. To identify, categorize, compare PC models in primary and community care and analyze them through nursing skills and activities, using the ASALEE PC link-nurses' specific role as a comparator. A narrative literature review on studies published between 2017 and 2024 was performed. PC models were categorized using the Understanding Integrated Care Conceptual Framework. Extracted data on nursing activities and skills in PC were compared with those developed by ASALEE's PC Support Group. This group is working on the integration of PC for patients in primary and community care. Twenty-one studies were selected. Searching on micro, meso, and macro levels, the review identified six key models of PC in primary and community care: integrative PC, health promotion-, community-, professional skills-, patient-centered, and end-of-life process-focused. These models emphasize inter-professional collaboration, informal caregivers' involvement, community engagement, and patient partnership in PC support. The review provides insights into PC nurses' activities and skills in primary and community care, particularly in terms of interpersonal relationships. The review is limited by heterogeneous study designs and contexts, which constrain generalizability, but, while partially transferable to the French healthcare system, these models require adaptations to be fully integrated. This review proposes perspectives for PC integration, future research, and to enhance ASALEE PC link-nurses' practice and strengthen their collaboration with physicians, informal caregivers, and patients, in France and at the international level. This review identifies PC models, core nursing skills and activities, and collaborative practices that can guide future PC nurses in primary and community care, by proposing changes for their implementation. The World Health Organization notes many people lack access to palliative care, especially in community settings. In France, ASALEE is a program where nurses and family doctors work together in local health centers to support patients. While ASALEE nurses now help with palliative care, we need clearer understanding of their specific roles and skills.We reviewed 21 studies (2017-2024) on palliative care nursing models in primary and community care. We found six main approaches, all emphasizing teamwork between healthcare professionals, involving families and communities, and focusing on patients’ individual needs and life goals. These models show how nurses can effectively provide palliative care through activities like symptom management, emotional support, care coordination, and helping patients make informed decisions.While these models offer valuable insights, they need adaptation to fit different healthcare systems like France’s. This research helps identify how programs like ASALEE can better integrate palliative care into everyday community health services by clarifying the essential skills, activities, and collaborative practices nurses need to support patients with serious illnesses near the end of life.
The majority of deaths worldwide are attributable to non-communicable diseases, with approximately four-fifths occurring in low- and middle-income countries. Chronic Obstructive Pulmonary Disease (COPD) is currently the fourth leading cause of mortality globally and is projected to become the third leading cause by 2030. Our objectives were to: (1) determine the self-reported burden of palliative care-related symptoms and concerns (social, spiritual, psychological, physical), and (2) identify predictors of burdensome symptoms and concerns among adults with COPD attending primary care services in South Africa (including social support). A cross-sectional survey was conducted across eight primary care facilities in the Western Cape. Sociodemographic data (age, sex, smoking status, and number of missed medication doses in the preceding seven days), clinical data, peak expiratory flow (PEF), and Karnofsky Performance Status (KPS) were collected. Participants completed the African Palliative Care Association African Palliative Outcome Scale (APCA APOS), the Medical Outcomes Study Social Support Survey (MOS-SSS), the London Chest Activity of Daily Living scale (LCADL), and the COPD Assessment Test (CAT). Ordinal logistic regression was used to examine factors associated with palliative care-related symptoms and concerns. A total of 387 participants were recruited (mean age 59.5 years).In terms of clinical importance APOS items with a prevalence of at least 20% that were rated at the most burdensome levels (scores of 4 or 5) included breathlessness (50.9%), need for help and advice in planning for the future (50.13%), difficulty sharing feelings (29.1%), weakness (25.32%), worry (25.26%), and pain (22.19%). Multivariable ordinal logistic regression analysis showed that greater social support (MOS-SSS) was associated with lower (better) APOS total scores (OR 0.97, 95% CI 0.96-0.98; p<0.001). Reduced ability to perform activities of daily living (LCADL) was associated with worse palliative care outcomes (OR 1.04, 95% CI 1.02-1.07; p<0.001). Higher (worse) CAT scores were also significantly associated with poorer palliative care outcomes (OR 1.13, 95% CI 1.09-1.17; p<0.001). The impact of social support on self-report concerns demonstrates the importance of a new public health approach to palliative care for COPD patients attending primary care services in sub-Saharan Africa. Background Most deaths worldwide are caused by long-term illnesses such as heart disease, cancer, and lung disease, with many occurring in low- and middle-income countries. Chronic Obstructive Pulmonary Disease (COPD) is a long-term lung condition that makes breathing difficult and is one of the leading causes of death globally. People living with COPD often experience distressing symptoms, including breathlessness, pain, fatigue, and emotional distress. However, these concerns are not always well addressed in routine healthcare, particularly in primary care settings. What was this study trying to find out? To understand how severe palliative care–related symptoms and concerns are among adults with COPD attending primary care clinics in South Africa. To identify factors linked to worse symptoms and concerns. How was the study done? We conducted a survey in eight primary care clinics in the Western Cape. Adults with COPD were asked about their symptoms, daily activities, social support, and how COPD affects their lives. We also collected basic health information, including breathing measurements and overall physical functioning. The data were analysed to identify factors associated with more severe symptoms and concerns. What did we find? A total of 387 people took part in the study, with an average age of around 60 years. People with stronger social support, such as help from family and friends, reported fewer and less severe symptoms and concerns. People who had more difficulty with everyday activities experienced worse symptoms and concerns. Those whose COPD symptoms had a greater impact on daily life also reported more severe problems. What does this mean? These findings highlight a clear need to integrate person-centred palliative care into primary care services in South Africa and similar settings. Addressing not only physical symptoms but also emotional and social needs could significantly improve quality of life.
Each year, millions of people around the world experience serious health-related suffering from life-threatening and life-limiting illnesses and require palliative care. Palliative care is a human right to adequate and timely interventions for the well-being of patients with serious illnesses and their families. The World Health Assembly incorporated palliative care as a component of universal health care, reinforcing the World Health Organization's mandate to support governments in integrating the service into primary health care. Yet, fewer than half of the countries across the globe have realized this integration. Low- and middle-income countries lag in the provision of palliative care and pain relief for children and adults and have disproportionately higher mortality rates among people who experience serious health-related suffering. Our objective is to create awareness of barriers to positioning palliative oncology in healthcare and to propose affirmative measures to improve the services for children and adults in Caribbean and Sub-Saharan African countries. Four critical barriers influencing the positioning of palliative care in healthcare systems are presented: the exclusion of palliative care in universal health care schemes, restrictions to oncological end-of-life care, insufficient deliberate distinctions in services for children and adults, and limited access to medications and the absence of medication policies and regulations. We present three measures, with examples, of how to address barriers to integrating palliative oncology in healthcare systems: an approach to capacity building for pediatric palliative care in African countries, ensuring more equity in delivering primary care services; repositioning culturally sensitive psychosocial oncology care in Sub-Saharan African countries and the Caribbean, focusing on the habilitative opportunities that exist and bridging cost-effective efforts within health systems; and a matrix of domains and dimensions supports the construction of financial structures for the sustainable resilience of health care systems. Finally, we present recommendations for advocacy and to generate support for implementing the proposed measures to transform palliative services for children and adults. This paper supports the development of policies and interventions to close gaps in delivering healthcare to people affected by cancer. Further research may stem from this work, focusing on palliative care for critical conditions from other illnesses.
Palliative care (PC) needs are substantial in Nigeria, yet access to specialist PC services remains limited, particularly in rural and peri-urban communities. To co-create an implementation-ready, community-delivered PC package for rural Nigerian settings without PC specialists and specify its components, delivery roles, and referral pathways. Sequential explanatory mixed-methods, participatory co-creation design in which quantitative prioritization informed qualitative refinement. Participants (health professionals, traditional and religious leaders, patients, caregivers, advocates, and policymakers) used Mentimeter® to generate and rank feasible non-pharmacologic components, followed by an adapted Group Model Building (GMB) process to identify key health-system and sociocultural determinants, specify the most appropriate delivery settings and cadres, and define delivery processes and referral pathways to basic PC providers at facilities. The process included three pre-workshop virtual sessions (n=51) and a 5-day in-person GMB workshop in Enugu, Nigeria (n=45), with diverse participants from all six geopolitical regions recruited via the ICON-3 Practice-Based Research Network. Outputs were refined through participant validation and technical expert review to enhance feasibility and implementation readiness. Participants prioritized effective pain and symptom relief, strengthened communication and shared decision-making, intentional engagement of religious leaders, and improved community-primary care collaboration. The resulting package comprises three components (pain and symptom management, psychosocial support, spiritual care) delivered via a hub-and-spoke model in which CHEWs/CHAs serve as community "Anchors," while facility-based basic PC providers and tertiary specialists provide oversight and manage complex cases. Key barriers included limited training and stigma, medication access constraints, and weak referral systems; proposed solutions emphasized training with supportive supervision, improved medicines access/financing and strengthened referral pathways and community support structures. A participant-designed, task-shared, hub-linked community PC package is feasible in principle for Nigerian settings without PC specialists and provides an implementation-ready blueprint for feasibility testing, adaptation, and scale-up planning. Many people in Nigeria live with serious long-term illnesses such as cancer, HIV, heart disease, kidney disease, and sickle cell disease. These illnesses can cause pain and other difficult symptoms, emotional distress, family strain, and spiritual concerns. Yet in many rural and peri-urban communities, palliative care specialists and organized palliative care services are limited. This study worked with people who are directly involved in care to design a practical palliative care package that can be delivered in communities without specialists. Participants included health professionals, community health workers, patients, caregivers, patient advocates, policy makers, and traditional and religious leaders from all six geopolitical zones of Nigeria. We first used an anonymous ranking tool (Mentimeter®) to identify which palliative care activities were most feasible in rural, resource-limited settings. We then used a participatory group process (Group Model Building) to agree on what care should be delivered, who should deliver it, where it should happen, and when people should be referred to higher-level facilities. Participants designed a package with three parts: (1) pain and symptom management, (2) psychosocial and emotional support, and (3) spiritual care. The package uses a “hub-and-spoke” model. Community Health Extension Workers and Community Health Assistants provide first contact, follow-up, education, and navigation in the community, while facility-based providers provide supervision and manage complex cases. Participants also identified key barriers (limited training, stigma, medication access, and weak referrals) and proposed solutions, including training with supportive supervision, better medicine access and financing, and stronger referral and community support systems. This package offers a clear blueprint for pilot testing and scale-up in underserved settings.
People living with motor neurone disease (MND) increasingly receive complex, life-sustaining interventions at home, including ventilation, tube feeding, and cough assist support. These demands place substantial strain on family carers and often require input from paid homecare workers. Despite their essential role, little is known about how homecare workers contribute to complex MND care, how they integrate within multidisciplinary teams, or how families experience their involvement. To examine people living with MND and family members' perspectives of homecare worker roles, responsibilities, relationships when complex interventions are required. A qualitative secondary analysis of data from two prior studies exploring home ventilation and tracheostomy ventilation in MND. Seven relevant NVivo nodes and 33 sub-nodes from interviews with 68 participants were re-coded using a deductive framework. Fourteen new nodes and 11 sub-nodes were generated and organised into three themes: care commissioning and provision; relationships; and the home environment. Participants described fragmented and inconsistent care commissioning, requiring families to advocate persistently for adequate support. Challenges included funding barriers, high staff turnover, and limited MND-specific knowledge, which undermined trust and compromised safe, effective care. Relationships with homecare workers ranged from highly valued, stable partnerships to strained interactions shaped by competence concerns, emotional labour, and mismatched expectations. The presence of homecare workers and medical equipment transformed the home into a quasi-clinical space, reducing privacy, disrupting routines, and requiring households to adapt around care provision. Yet strong relationships with homecare workers could enhance quality of life. Homecare workers play a critical role in delivering complex home-based MND care, yet quality is inconsistent. Improving training, stabilising staffing, supporting care coordination, and preparing families for the relational and environmental impact of homecare are essential for fostering sustainable, trusted care relationships, and improving outcomes for people living with MND and their families. Paid homecare support for people with motor neurone disease: Insights from people with MND and their families This study explores how people living with motor neurone disease (MND), and their family members, experience support from paid homecare workers when complex medical interventions, such as ventilation, feeding tubes, suction and hoists are needed at home. As care needs increase, families often need help from paid homecare workers, yet no research has asked families about what this support is like. To address this, we re-analysed interview data from two earlier studies about living with home ventilation in MND, and developed three main themes: Care commissioning and provision: Participants described the process of securing a care package as confusing and often exhausting, with multiple organisations involved. Families frequently had to push to get the support they needed. Problems included shortages of trained staff, high staff turnover, and delays caused by complex funding rules. Relationships with homecare workers: Good homecare workers made a huge positive difference. Relationships with homecare workers ranged from highly positive, built on trust, skill and becoming ‘part of the family’, to strained, particularly when workers lacked MND-specific training or confidence with equipment. Trust was crucial: when present it eased pressure on families but when absent it increased stress and vigilance. Impact on the home environment: Having carers in the house, changed home life, reducing privacy, disrupting household routines, and living spaces became filled with medical equipment and ever-present homecare workers. Families described feeling like hosts in their own homes and sometimes having to manage the emotional labour of being polite or accommodating even when exhausted. Overall, the study shows that homecare workers play an essential role in complex MND care, but quality is inconsistent. Better coordination and support for families to manage these close relationships within the home are vital to reduce pressure on families and improve quality of life.
The COVID-19 pandemic and the introduction of voluntary assisted dying (VAD) legislation in Australia are major societal exposures that altered the social context around death and dying. Although death literacy is a socially embedded concept, there are limited studies assessing how death-related societal events like COVID-19 and VAD legislation influence its development. To examine associations of the COVID-19 pandemic and VAD legislation introduction with death literacy, and whether these societal exposures functioned as contextual pathways linking social capital, attitudes, and supportive actions around death and dying with death literacy outcomes. This study assessed death literacy as operationalised by the Death Literacy Index. A cross-sectional national survey. Participants were recruited through the Online Research Unit from a representative online non-probability panel of 1202 Australian adults, stratified by age, gender, and geographic region. Death literacy was measured using the Revised Death Literacy Index. Multivariate regression examined associations of COVID-19 and VAD legislation with death literacy after adjusting for relevant covariates. Mediation analyses explored whether these societal exposures functioned as indirect contextual pathways linking social factors with death literacy. Of the 1202 participants, 56.4% were female and 43.6% male. Over 40% (483) reported some form of COVID-related experience, while nearly 12% (139) reported experience related to VAD. Multivariate analysis showed that perceived gain of knowledge during the pandemic (B=0.179) and VAD legislation introduction (B=0.319) were positively associated with death literacy, whereas experiencing COVID-related death had a negative association. Social capital, social attitudes toward death, and supportive actions to carers demonstrated significant positive indirect effects, partially mediated by the pandemic and VAD exposure. Personal attitudes toward death showed negative indirect effects. This study highlights the importance of public health palliative care approaches that promote death literacy, especially during public health crises or policy change. Findings reinforce that death literacy does not develop in isolation but is shaped by social environments that enable or limit the exposure, awareness, and engagement to death, dying, and bereavement. Death literacy is a socially embedded concept that is mainly acquired through providing care to the dying person, caregiving, having conversations around matters concerning death, as well as exposure to death-related events in society. Australia experienced two major death-related societal events in recent years. The COVID-19 pandemic emerged as a global health crisis between 2020 and 2023, and Australia’s response included highly restrictive public health measures coupled with widespread messaging to contain the virus. Voluntary assisted dying legislation (VAD) was also being introduced in Australia during this time, leading to increased public conversations around ethical and legal aspects of death and dying. Despite these developments, we know little about how these death-related societal changes affected the way people and communities understand and engage with death and dying. To learn more, we examined whether the COVID-19 pandemic experience and the introduction of VAD legislation were linked to the levels of death literacy of Australians, and whether these events help explain how social connections, supportive behaviours and social and personal attitudes towards death are linked to knowledge and skills around death, dying, and bereavement. In summary, we found that both the COVID-19 pandemic and the introduction of VAD were significantly associated with death literacy, through direct associations as well as indirect pathways. We also learnt that personal attitudes towards discussing death did not translate into higher levels of death literacy within the contexts of COVID-19 and VAD. Overall, the findings showed that death literacy is not just an individual attribute, but is also shaped by social and contextual factors that may influence people’s ability to access, understand, and act on end-of-life information and resources within their social context.
The disease burden of malignant brain tumours poses significant challenges to both patients and their family caregivers. Even years post-bereavement, neuro-oncology caregivers can suffer serious and long-lasting adverse outcomes. A previous quantitative survey (reported separately) highlighted significant challenges experienced by bereaved neuro-oncology caregivers. This current work explored these issues further through focus groups. To identify opportunities to enhance support, we investigated caregiver experiences during the patient's end-of-life phase, the dying process, and post-bereavement outcomes. Focus groups as a component of a sequential mixed-methods study designed together with bereaved caregivers. We performed online focus groups covering the end-of-life phase, the period surrounding the patient's death, and their post-bereavement outcomes. Sampled from survey respondents, caregivers who were ≥6 months post-bereavement were invited to take part in online focus groups. Following audio transcription, data were analysed using reflexive thematic analysis. In three groups, 7 female (64%) and 4 male (36%) caregivers (55% partners of patients) of deceased patients diagnosed with glioblastoma were interviewed. Themes covered 1) care experiences in the end-of-life phase (covering communication, information, support needs, and balancing family dynamics), 2) caregiver experiences surrounding patient death, and 3) immediate and longer-term post-bereavement outcomes (covering complex and conflicting emotional responses, expectations and strategies to cope with grief, and the value of formal and informal support). Findings highlight ongoing significant and unmet emotional support needs of bereaved neuro-oncology caregivers. Caregivers want and deserve to be proactively offered adequate and timely support which could limit the long-lasting adverse impact of providing care. Brain tumours place a heavy emotional and practical burden on family caregivers. Many caregivers experience lasting difficulties that can continue after the patient’s death. This study explored caregivers’ experiences during the patient’s end of life phase, the dying process, and life after bereavement, with the aim of identifying opportunities to improve support. We did online focus groups following a survey (reported elsewhere). Caregivers who were at least six months post‑bereavement were invited to participate. In total, 11 caregivers took part across three focus groups; most were women, and over half were partners of the patient. All had cared for someone diagnosed with glioblastoma. Discussions were audiorecorded, transcribed, and analysed using thematic analysis. Three main themes were identified. First, caregivers described their experiences during the end of life phase, highlighting challenges related to communication, access to information, unmet support needs, and managing family relationships alongside caregiving responsibilities. Second, caregivers shared their experiences surrounding the patient’s death, which was often described as intense and emotionally challenging. Third, caregivers reflected on their immediate and longer term bereavement experiences, including complex and sometimes conflicting emotions, expectations around grief, personal coping strategies, and the perceived value of both formal and informal support. Overall, the findings demonstrate substantial and ongoing emotional support needs among bereaved neurooncology caregivers. Caregivers emphasised the importance of being proactively offered timely and appropriate support, which may help reduce the long term negative effects associated with caring for someone with a brain tumour.
Parents of children receiving palliative care often experience significant caregiving responsibilities and unmet support needs, emphasising the importance of systematic assessments and tailored interventions. This study examined the feasibility of the Carer Support Needs Assessment Tool Intervention Paediatric (CSNAT-I Paediatric) within a national unit for children's palliative care in Norway. It further explored the support needs of parents of children with severe neurological impairments, including neurometabolic conditions. A non-randomised, multi-method feasibility study. Feasibility was examined across domains of acceptability, demand, implementation, practicality, integration, and adaptation. Cognitive interviews with parents (n=34) were conducted to examine acceptability and needs for adaptation. Overall feasibility from parents' perspectives were measured using an electronic questionnaire (n=12), and data on parents' support needs were extracted from the children's medical records. Intervention providers' perspectives on acceptability, demand, practicality, implementation and integration were explored in a focus group interview (n=6). Parents found the CSNAT-I Paediatric acceptable and all domains of the assessment tool were considered relevant, although they suggested adaptations to better capture care coordination and the child's daytime activities. Parents' support needs were heterogeneous and often required action from multiple parties. Intervention providers viewed the CSNAT-I Paediatric as useful for tailoring services to families but identified practical and implementation challenges in following up on identified needs. The CSNAT-I Paediatric is feasible in children's palliative care settings. Effective implementation requires interprofessional and intersectional collaboration among stakeholders to meet families' complex support needs, and further refinement could enhance its utility. Testing a New Approach to Identify and Address Support Needs of Parents in Children’s Palliative Care. Parents who care for children receiving palliative care often have many responsibilities and may not get all the support they need. It is therefore important to regularly ask parents about their support needs and to offer tailored assistance. This study looked at whether a systematic approach for assessing and addressing parents’ support needs could be used in practice in a national children’s palliative care (CPC) unit in Norway. We focused on whether the method was acceptable to parents and providers, easy to use, and could be integrated into routine care. We also explored the types of support needs reported by parents of children with life-limiting and life-threatening conditions. Parents were asked to give feedback on the Norwegian version of the assessment tool included in the method, complete a questionnaire about their experiences, and identify their most important support needs. The professionals who delivered the method took part in a group interview to share their experiences. Overall, parents were happy with the method. They felt it helped identify important support needs, although some areas, such as care coordination and daytime activities for their child, could be improved. Parents’ support needs varied widely and often required input from several services. The professionals found the tool helpful for tailoring support to families but reported challenges related to time, coordination, and implementation. In conclusion, the method, called CSNAT-Intervention Paediatric, can be used in children’s palliative care settings. To work well in practice, it needs strong collaboration between different professionals and services, and some further development may improve how well it meets families’ needs.
School is a key setting for a child's cognitive, social, and civic development and may therefore offer a promising space to open dialogue about death and dying. Yet awareness-raising practices on death and dying in schools can be difficult to identify within the abundance of scientific and practical writings. To support school staff and enrich curricula with coherent and context-sensitive approaches, we sought to map existing practices to better understand the levers, barriers, and conditions for success. To explore the current state of knowledge and practices on awareness about death and dying (ADD) in the school context, and answer these questions: 1) How is ADD addressed in school settings? 2) What are the views of young people, parents, and school personnel on raising ADD? 3) What factors influence such ADD? This scoping review followed Levac's methodology. Searches were performed in 17 scientific and grey literature databases, complemented by reference tracking and community partners' consultation. Data were charted by research questions and analyzed using content analysis. 35 writings (2010-2023) were included. Various awareness-raising practices combining multiple activities were identified, emphasizing the value of multimodal approaches that engage cognitive, emotional, and creative dimensions. Interdisciplinary collaboration with community organizations was frequently requested to support ADD practices. Perceptions of ADD were generally positive, though nuances emerged among young people, school personnel and parents. Our results identify numerous factors that influence ADD, span between individual, family, school, and sociocultural levels, showing the multidimensionality and systemic nature of this phenomenon. ADD in schools is shaped by its context, such as collaboration between interested parties, teacher training, sensitive practices, and supportive policy frameworks enabling meaningful curricula integration. Without clear political and institutional support, initiatives remain fragile and dependent on isolated actors. Death is part of life, yet many children say it is rarely spoken about at school. We reviewed recent publications to better understand how awareness about death and dying (ADD) in school settings was viewed and practised. We found 35 sources published between 2010 and 2023. 1) How do we raise ADD? A range of activities can be used in school settings: guided class discussions, short talks by nurses, psychologists, or community workers, creative projects like drawing or storytelling, films or books to start a conversation, and, in some cases, visits to hospices or community spaces. In the reviewed writings, combining activities was found to help children think, feel, and express themselves. 2) What are the views of children, parents, and school staff on raising ADD? In the included writings, children often described death as being everywhere but not openly discussed. In most of the writings that reported on parents’ and school staff’s perspectives, they were supportive, even if they expressed some nuances and concerns. 3) What factors influence ADD? The writings reviewed suggest that ADD is influenced by the child’s age, cognitive development and grief experiences, family’s willingness to talk about death, school environment, curriculum, as well as teachers’ confidence, and more broadly culture, religion, media, and local policies. Because of these different factors, the integration of ADD in school requires clear guidance and teacher training, and cooperation with communities can make a real difference. In short, the writings suggest that school settings can provide safe opportunities for children to find words, ask questions, and build “death literacy”. When thoughtfully integrated, such practices may help young people face end-of-life realities with greater understanding and for themselves and others.
While healthcare costs continue to grow, an aging population along with rising chronic diseases are increasing demand for high-quality end-of-life care. Our objectives include calculating hospital cost sub-categories, such as laboratory, medication, nursing, physician, and social counseling, and evaluating the economic impact of specialist palliative care (sPC) on overall hospital costs per stay and per day of severely ill and dying patients who died at a Swiss university hospital between 2016 and 2022. Retrospective, observational cohort study with a control group. We used administrative cost data from the final hospitalization of patients who died at a university hospital in Switzerland. We compared hospital costs of patients receiving care, including sPC, with those of individuals receiving usual care (UC). We defined timely sPC referral as initiating within 3 days of admission. We used a generalized linear model-assuming gamma-distributed errors and with a logarithmic link function-adjusted by inverse probability weighting to adjust for patient characteristics differences. Adjusted overall hospital costs per stay were higher for sPC (Swiss francs (CHF) 31,350 (95% confidence interval (CI) 28,590-34,854)) compared with UC patients (CHF 20,351 (95% CI 18,454-22,596)); mean ratio of 1.54 ((95% CI 1.34-1.77), p < 0.001). In contrast, adjusted overall daily costs were lower for sPC patients (CHF 400); mean ratio 0.87 ((95% CI 0.79-0.97), p = 0.005), mainly due to reduced diagnostic and medication costs. However, longer hospital stays (sPC 11 days vs UC 5 days) offset daily cost reductions. UC patients had nearly double the total costs of timely sPC referral patients (cost ratio 0.52, CI 0.46-0.58). To capture intended and unintended effects and avoid oversimplified cost debates, hospital cost analyses of sPC should examine detailed cost sub-categories rather than only total costs. Cost optimization could be reached by timely transfer of patients with sPC needs. Future studies should investigate barriers to transitioning patients across care settings to improve both quality and cost-effectiveness. How palliative care changes hospital costs at the end-of-life: Insights from a Swiss University Hospital As people age and chronic illnesses become more common, more people need high-quality care at the end of their lives or end-of-life care. Hospitals must provide end-of-life care, while also keeping costs manageable. We examined hospital costs for patients who died at a university hospital in Switzerland between 2016 and 2022. We compared two groups: patients who received specialist palliative care (sPC) and patients who received usual care (UC). sPC focuses on • relieving symptoms • improving comfort • supporting patients and families We looked at hospital cost data, including expenses for staff; medications; laboratory; and other services, then we made adjustments for patient characteristic differences. Since we found patients receiving sPC had longer hospital stays (11 days) when compared with UC patients (5 days), their total hospital costs per stay were higher (about CHF 31,000 for sPC vs. CHF 20,000 for UC). However, patients receiving sPC showed lower daily hospital costs by around CHF 400—a lower cost mainly from receiving fewer diagnostic tests and taking less medications. Our findings suggest that while sPC reduces the intensity and cost of care per day, the longer stays mean that overall costs per stay are higher. Based on our study, we developed a few recommendations. To make the most of benefits from sPC, hospitals could combine it with timely discharge planning and good follow-up options, such as hospice, home-based care, or long-term care facilities. Our recommended approach could improve patient comfort, maintain quality, and help manage healthcare costs more effectively, while supporting patients and their families at the end of life.
The purpose of this review was to explore the primary obstacles to providing comprehensive, family-centered palliative care during the perinatal and neonatal period, using insights from existing literature and clinical practice. Perinatal and neonatal palliative care (PNPC) represents a holistic, interdisciplinary, and family-centered approach aimed at improving the quality of life for newborns diagnosed with life-limiting or life-threatening conditions. Despite its clinical and ethical significance, the provision of such care in low- and middle-income countries, such as Iran, remains substantially underdeveloped and fraught with multifaceted barriers. In this narrative review, the WHO's House Model was used to systematically examine perinatal and neonatal palliative care challenges and propose viable solutions for analyzing the current landscape in Iran and similar low-resource settings. This model comprises 6 foundational domains: (1) Empowerment of people and communities, (2) Health policy, (3) Research, (4) Use of essential medicines, (5) Education and training, and (6) Provision of palliative care. The challenges are multifaceted and include deep-rooted cultural and religious norms, restrictive legal frameworks, and the absence of standardized national guidelines. Furthermore, there is limited access to essential medications, particularly opioids, and shortages in trained human resources. Finally, significant gaps exist in interdisciplinary education and communication skills among healthcare professionals. The findings underscore the urgent need to develop culturally and legally informed care frameworks, invest in interdisciplinary capacity-building, expand access to essential medications, palliative care services and enhanced psychosocial and spiritual supports. Addressing these issues may not only improve end-of-life outcomes for neonates but also mitigate parental distress, promote ethical care practices, and enhance the overall responsiveness and equity of the health system.
A significant proportion of healthcare costs is incurred in hospitals at the end of life (EoL), with a small group of patients accounting for most of the costs. Scarce resources should be allocated based on cost-effectiveness. High costs and low satisfaction with care suggest low-value care at EoL; however, there is little evidence regarding which patients receive such care. To identify the characteristics of older patients who experience high-cost care but report low satisfaction with care at EoL. Secondary data analysis of mortality follow-back surveys: International Access, Rights, and Empowerment (IARE) studies. We surveyed the next of kin of older patients who received palliative care or died in hospital in England. Satisfaction with care at EoL and cost of hospital care calculated with quantity of services and unit costs. We used multinomial logistic regression to analyse factors associated with potentially low-value care. 404 patients were included (mean [SD] age: 80.4 [8.5] years). During the last three months of life, 53.8% of the total hospital care costs were incurred by 20% of the patients. 36.6% of the respondents reported low satisfaction. Compared to patients with low-cost care and reporting satisfaction, patients who were 65-74 years old (relative risk ratio [RRR] = 3.2, 95% CI: 1.09 to 9.42), had low income (RRR = 4.12, 95% CI: 1.29 to 13.15) and with an illness duration of 1-12 months (RRR = 3.93, 95% CI: 1.37 to 11.21) were more likely to receive high-cost hospital care and report low satisfaction. Being younger, on low incomes and with short illness duration are associated with high-cost, low-satisfaction hospital care at EoL. Identifying underlying mechanisms may enable targeted interventions to reduce high-cost, low-value care. Further investigation is needed to change the care trajectories of patients with these risk factors. Most healthcare costs at the end of life go toward hospital care, and a small group of patients accounts for the largest share of these costs. However, receiving high-cost care does not necessarily mean better outcomes. When patients experience both high costs and low satisfaction, it suggests care that is not good value and should be avoided if possible. But there has been little evidence about which patients tend to receive this type of care. The research team analyzed data from two surveys of bereaved family members or carers of older patients who potentially had palliative care needs or died in hospitals in England. They aimed to identify the characteristics of older patients who were most likely to receive high-cost, low-satisfaction hospital care at the end of life. The study included 404 older patients. Those who were aged 65 to 74 years, had lower incomes, or had an illness lasting between one month and one year were more likely to receive high-cost hospital care and to have low satisfaction with that care. The findings suggest that the oldest patients, those with higher incomes, and those with longer-term chronic illnesses may be more likely to receive better-value hospital care. These differences point to possible inequities in healthcare, which can also affect how efficiently hospital resources are used. Having realistic expectations about care may also play a role. The study highlights specific targets that could be the focus of future efforts to improve trajectories of care.