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Background: In the last decade, there has been a growing concern to make palliative care more culturally sensitive and contextually appropriate. This concern is also relevant in Indonesia, where the progress of palliative care, particularly in home-based care, has been slow. Like elsewhere in the world, there has been a growing awareness of the importance of shifting from a curative orientation towards a palliative one, especially in cases where further medical treatment is futile. In this paper we argue that the development of palliative care practices would benefit greatly from learning about the values that are important for patients, families, and health professionals. It is important to understand these values to support forms of care that aim to enhance quality of life. To demonstrate this, we analyse the care values people in rural Java evoke in their home palliative care practices. Methods: We conducted an eight-month ethnographic study involving forty-nine patients, families, and health professionals. Results: We identified three specific Javanese Islamic values: making an effort (ikhtiar), being sincere (ikhlas), and being in a state of surrender (pasrah). These values influenced the participants' activities in a palliative care setting. Based on our findings, we suggest three strategies to incorporate these values into palliative care practices and to better facilitate palliative care's integration into Javanese Muslim communities. The first strategy is to include efforts to reduce suffering and improve the quality of life using the concept of ikhtiar. The second strategy is to foster sincerity (ikhlas) to help patients and families accept the realities of their condition and provide care for patients at home. The last strategy is to clarify that palliative care is not synonymous with 'giving up' but can be seen as an act of pious surrender. Conclusions: Our study identified three Islamic-Javanese values that can be incorporated to strategies aiming at enhancing palliative care practices, resulting in care focused on improving quality of life rather than futile attempts at a cure. [ABSTRACT FROM AUTHOR]

Background: The communication processes between different stakeholders in outpatient palliative care face challenges when multiprofessional teams want to keep each other updated on patient information. Meanwhile, the software market offers different tools to connect these teams in real-time to improve communication. In the research project ADAPTIVE (Impact of Digital Technologies in Palliative Care), we investigated how information and communication technology affects collaboration and work in multiprofessional teams and what advantages and disadvantages the use of said software might entail. Methods: We conducted 26 semi-structured interviews between August and November 2020 with general practitioners (n = 8), palliative care nurses (n = 17), and a pharmacist (n = 1). They were conducted in a hybrid format, meaning that both face-to-face interviews and telephone interviews were carried out. Subsequently, we analyzed the interviews following the qualitative content analysis according to Kuckartz. Results: Information and communication software has the potential to enable faster communication and delegation of tasks and to simplify communication and task management between providers. Furthermore, it creates the opportunity to decrease unnecessary supervision of duties and responsibilities for physicians in multiprofessional teams. Therefore, it allows facilitating the collaboration between multiprofessional teams that work independently of each other but care for the same patients. All providers have the same knowledge about their patients without time-consuming coordination such as phone calls or search processes in paper documentation. On the other hand, mishandling, poor Internet connection, and unfamiliarity with various features can diminish these benefits. Conclusion: Even though the use of such software offers many advantages, these advantages only reveal themselves if the software is used as it was intended by the developers. Misuse and unawareness of the individual functions can lead to the full potential not being realized. The software developers frequently offer specialized training, and the multiprofessional teams should utilize that to improve team communication, facilitate tasks, and allow physicians to delegate tasks. Trial registration: The study is registered in the German Clinical Trials Register (DRKS): https://www.drks.de/drks%5fweb/navigate.do?navigationId=trial.HTML&TRIAL%5fID=DRKS00021603 (Registration number: DRKS00021603; date of first registration: 02/07/2020). [ABSTRACT FROM AUTHOR]

Background: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (≥ 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these. Methods: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach. Results: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes. Conclusions: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans. [ABSTRACT FROM AUTHOR]

Background: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF). Methods: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis. Results: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms. Conclusion: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care — ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession. [ABSTRACT FROM AUTHOR]

Background: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. Methods: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Results: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Conclusions: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term. [ABSTRACT FROM AUTHOR]

Background: Deprescribing has been defined as the planned process of reducing or stopping medications that may no longer be beneficial or are causing harm, with the goal of reducing medication burden while improving patient quality of life. At present, little is known about the specific challenges of decision-making to support deprescribing for patients who are accessing palliative care. By exploring the perspectives of healthcare professionals, this qualitative study aimed to address this gap, and explore the challenges of, and potential solutions to, making decisions about deprescribing in a palliative care context. Methods: Semi-structured interviews were conducted with healthcare professionals in-person or via video call, between August 2022 – January 2023. Perspectives on approaches to deprescribing in palliative care; when and how they might deprescribe; and the role of carers and family members within this process were discussed. Interviews were audio-recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the NHS Health Research Authority (ref 305394). Results: Twenty healthcare professionals were interviewed, including: medical consultants, nurses, specialist pharmacists, and general practitioners (GPs). Participants described the importance of deprescribing decision-making, and that it should be a considered, proactive, and planned process. Three themes were developed from the data, which centred on: (1) professional attitudes, competency and responsibility towards deprescribing; (2) changing the culture of deprescribing; and (3) involving the patient and family/caregivers in deprescribing decision-making. Conclusions: This study sought to explore the perspectives of healthcare professionals with responsibility for making deprescribing decisions with people accessing palliative care services. A range of healthcare professionals identified the importance of supporting decision-making in deprescribing, so it becomes a proactive process within a patient's care journey, rather than a reactive consequence. Future work should explore how healthcare professionals, patients and their family can be supported in the shared decision-making processes of deprescribing. Trial registration: Ethical approval was obtained from the NHS Health Research Authority (ref 305394). [ABSTRACT FROM AUTHOR]

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Aim: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. Research design: A qualitative, reflexive thematic design with an inductive analysis was used. Participants and research context: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. Conclusion: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process. [ABSTRACT FROM AUTHOR]

Background: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. Methods: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. Results: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. Conclusion: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity. [ABSTRACT FROM AUTHOR]

Background: Older adults experiencing homelessness (OAEH) age quickly and die earlier than their housed counterparts. Illness-related decisions are best guided by patients' values, but healthcare and homelessness service providers need support in facilitating these discussions. The Serious Illness Conversation Guide (SICG) is a communication tool to guide discussions but has not yet been adapted for OAEH. Methods: We aimed to adapt the SICG for use with OAEH by nurses, social workers, and other homelessness service providers. We conducted semi-structured interviews with homelessness service providers and cognitive interviews with OAEH using the SICG. Service providers included nurses, social workers, or others working in homeless settings. OAEH were at least 50 years old and diagnosed with a serious illness. Interviews were conducted and audio recorded in shelters, transitional housing, a hospital, public spaces, and over Zoom. The research team reviewed transcripts, identifying common themes across transcripts and applying analytic notetaking. We summarized transcripts from each participant group, applying rapid qualitative analysis. For OAEH, data that referenced proposed adaptations or feedback about the SICG tool were grouped into two domains: "SICG interpretation" and "SICG feedback". For providers, we used domains from the Toolkit of Adaptation Approaches: "collaborative working", "team", "endorsement", "materials", "messages", and "delivery". Summaries were grouped into matrices to help visualize themes to inform adaptations. The adapted guide was then reviewed by expert palliative care clinicians for further refinement. Results: The final sample included 11 OAEH (45% Black, 61 ± 7 years old) and 10 providers (80% White, 8.9 ± years practice). Adaptation themes included changing words and phrases to (1) increase transparency about the purpose of the conversation, (2) promote OAEH autonomy and empowerment, (3) align with nurses' and social workers' scope of practice regarding facilitating diagnostic and prognostic awareness, and (4) be sensitive to the realities of fragmented healthcare. Responses also revealed training and implementation considerations. Conclusions: The adapted SICG is a promising clinical tool to aid in the delivery of serious illness conversations with OAEH. Future research should use this updated guide for implementation planning. Additional adaptations may be dependent on specific settings where the SICG will be delivered. [ABSTRACT FROM AUTHOR]

Background: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. Methods: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. Results: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. Conclusions: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society. [ABSTRACT FROM AUTHOR]

Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020. [ABSTRACT FROM AUTHOR]

Background: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. Aim: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? Methods: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. Results: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". Conclusion: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices. [ABSTRACT FROM AUTHOR]

Background: The aim of advance care planning (ACP) is to enable patients to define and discuss their values and preferences to ensure that the care they receive is consistent with their needs and wishes. Most studies of ACP with older adults focus on conversations conducted in institutions. This study aimed to explore how ACP with older patients is carried out and experienced by healthcare professionals when the conversations occur in their private homes. Methods: The data were obtained from participant observations of ACP conversations in the homes of eight older patients with advanced cancer, which also involved relatives and healthcare professionals. Additionally, ethnographic interviews were conducted with the healthcare professionals. We undertook a narrative analysis of what was said, and how the individuals acted and interacted. Results: The home influenced both the substance and form of the ACP conversations. The patients and relatives welcomed the healthcare professionals as guests and were encouraged to share their perceptions of their current situation, joys and worries. Their values were often implicit in their stories about past experiences. The planning mainly focused on life-prolonging treatment and the preferred future place of care. Several patients were not ready to discuss one or more ACP issues. The palliative-care-team physician addressed the patients' readiness for ACP by asking for permission to move on to a different topic, shifting between serious and lighter topics, and using elements from the home as 'door openers' to continue conversations. ACP conversations were an essential basis for future palliative care and cooperation, giving important additional information about the patient and their relatives. Conclusion: Conducting the ACP conversations in the patients' homes ensured a homely atmosphere that facilitated a caring approach when sensitive issues were discussed, and in turn supported the identification of important personal values. The healthcare professionals expressed that the ACP conversations represented an essential common reference point and provided a shared awareness of the expected disease trajectory and the values, preferences and needs of the patient. These findings are particularly important given that many older patients struggle to verbalize or form an opinion on issues affecting their future. [ABSTRACT FROM AUTHOR]

Background: The 'Let Me Decide' Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life. This paper will present an evaluation of the systematic implementation of the LMD-ACP programme in the homes. Methods: Focus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Data was analysed using manifest content analysis. Results: Five key categories emerged, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme included enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff. Discussion: A number of recommendations were proposed by participants and included multi-disciplinary team involvement, and a blended approach to education on the topic. According to participants relationships with residents deepened, there was a more open and honest environment with family, end of life care focused more on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict. Conclusion: The introduction of the LMD-ACP programme enhanced the delivery of care in the long-term care sites and led to a more open and positive care environment. [ABSTRACT FROM AUTHOR]

Background: This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers' perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers. Methods: The study used mixed qualitative methods, involving non-participant observation, semi-structured interviews and a review of case notes. Four acute wards in an English University teaching hospital formed the setting: an admissions unit, two health care of older people wards and a specialist medical and mental health unit for older people. Thirty-two members of staff took part in interviews, five members of the palliative care team participated in a focus group and 13 bereaved family carers were interviewed. In all, 245 hours of observation were carried out including all days of the week and all hours of the day. Forty-two individual patient cases were constructed where the patient had died on the wards during the course of the study. Thirty three cases included direct observations of patient care. Interviews were completed with 12 bereaved family carers of ten patient cases. Results: Carers' experience of the end of life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the experience of their relative's end of life care. Conclusions: Establishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals and family carers of their patients. [ABSTRACT FROM AUTHOR]

Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. Methods: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis. Results: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families': relatives and care staff. Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person's needs, ‘reflection' on their own emotions and caring relationships, ‘attentiveness' to the ID person's wishes and expressions of distress, ‘responsibility' for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing' the care with others. Conclusions: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals. [ABSTRACT FROM AUTHOR]

Background: Palliative care requires a multidisciplinary team to assist patients and their families to obtain good quality care at the end of life. Typically, community pharmacists have fewer opportunities to provide services for patients with palliative care needs than hospital pharmacists. Moreover, home-based palliative care (HBPC) by pharmacists remains low and there is a lack of research regarding HBPC provided by pharmacists. Therefore, this study sought to understand the views and reflections of community pharmacists in the clinical frontline providing palliative home services. Methods: Purposive sampling was used to recruit six community pharmacists for one-on-one, in-depth, semi-structured interviews and the data were analysed using thematic analysis. Results: Five major themes emerged: [1] Engagement, [2] Challenge, [3] Mission, [4] Career metamorphosis, and [5] Outlook. The pharmacists described how they engaged in HBPC and faced the challenges. They regarded opioid management as a burden. Moreover, some mentioned that reimbursement for palliative home care is low or non-profitable. They suggested building a platform to exchange advice and legislation adjustments so that they could pass on their experiences to less experienced pharmacists in HBPC. Conclusions: The involvement of pharmacists is crucial to provide better palliative care. Although the present study was small and might not fully represent the whole situation, the findings could still inform future education, training, and policy planning to promote pharmacists' participation in palliative care to generalise community palliative care. [ABSTRACT FROM AUTHOR]

Background: The pandemic Era has forced palliative care professionals to use a dignity-in-care approach in different settings from the classic ones of palliative care: acute and intensive care. We explored the meanings of dignity for patients, their family members, and clinicians who have experienced COVID-19 in the acute and intensive care setting. Methods: A qualitative, prospective study by means of semi-structured interviews with patients hospitalized for COVID-19, family members, and clinicians who care for them. Findings: Between March 2021 and October 2021, we interviewed 16 participants: five physicians, three nurses, and eight patients. None of the patients interviewed consented for family members to participate: they considered it important to protect them from bringing the painful memory back to the period of their hospitalization. Several concepts and themes arose from the interviews: humanity, reciprocity, connectedness, and relationship, as confirmed by the literature. Interestingly, both healthcare professionals and patients expressed the value of informing and being informed about clinical conditions and uncertainties to protect dignity. Conclusions: Dignity should be enhanced by all healthcare professionals, not only those in palliative care or end-of-life but also in emergency departments. [ABSTRACT FROM AUTHOR]

Background: Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses' experience of this, leading to a knowledge gap in this area. Aim: The aim of this study was to explore spouses' experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. Methods: A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results: Three main themes emerged regarding spouses' experiences of patients' thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. Conclusions: Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient's fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient's thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks. [ABSTRACT FROM AUTHOR]

Background: Home care nurses provide complex palliative care for patients who want to die in their own homes. This study aimed to explore home care nurses' facilitation of planned home death to better understand nursing practices. Methods: Data were collected between March 2019 and March 2020 using participant observations and semi-structured interviews. In addition, the number of planned home deaths was recorded. The analysis was guided by Roper and Shapira's framework on focused ethnography. Results: Twenty home care nurses (three men) in eight home care areas in two Norwegian municipalities met the inclusion criteria. Eight home deaths were registered, seven participatory observations were performed, and 20 semi-structured interviews were completed. Home care nurses find facilitating planned home deaths to be rewarding work, to the point of going above and beyond. At the same time, they describe facilitating planned home deaths as demanding work due to organizational stressors such as staff shortages, heavy workloads, and time restraints. While they tend to patients' needs, they also express concern for the wellbeing of the next of kin. They find it challenging to juggle the needs of the patients with the needs of next of kin, as these are not always correlated. Conclusion: Home care nurses are pushing the boundaries of their practice when facilitating planned home deaths while compensating for a fragile system by going above and beyond for patients and their next of kin. Providing insights into the work of home care nurses providing palliative care in patients' homes can impact recruiting and retaining nurses in the workforce and influence local practices and policies. [ABSTRACT FROM AUTHOR]

Background: One of the major challenges for healthcare professionals relates to awareness of patients' preferences relative to how and when to break bad news and how much information should be disclosed in the eventuality of a serious medical diagnosis or prognosis. On occasions, a serious medical diagnosis or prognosis is withheld from the patient. There is a scarcity of evidence about cultural preferences regarding breaking bad news in the palliative care setting in Ethiopia. Therefore, it is necessary to understand the surrounding cultural issues to properly convey bad news. The purpose of the study was to explore Ethiopian patients' cultural preferences for receiving bad news in a palliative care setting. Methods: A qualitative research approach and nonprobability, purposive sampling method were applied. In-depth interviews were employed to collect data from eight patients who were diagnosed with cancer and cancer with HIV/AIDS during the time of data collection. Thematic analysis was applied to identify themes and subthemes. The data were transcribed verbatim and analysed using ATLAS.ti 22 computer software. Results: The following three themes emerged and are reported in this study: (1) Perceptions about life-threatening illness: religious values and rituals are essential for establishing perspectives on life-threatening illnesses and preferences in receiving bad news. (2) Experiences with life-threatening illness: study participants' experience with the method of breaking bad news was sad, and they were not provided with sufficient details about their medical condition. Making appropriate decisions, fulfilling the ordinance of religious faith, and avoiding unnecessary costs were outlined as benefits of receiving bad news. (3) Preferred ways of breaking bad news; the findings revealed that incremental, amiable and empathic methods for delivering bad news were preferred. It was suggested that the presence of family members is crucial when receiving bad news. Conclusion: Patients choose to be told about their medical conditions in the presence of their family. However, the patient's needs for receiving bad news were unmet. Patients should be involved in the treatment decision process. Delivery of bad news needs to tailor the preferred methods, cultural values, and religious beliefs. Delivering bad news according to the patients' preferences helps to fulfil their wishes in palliative care. [ABSTRACT FROM AUTHOR]

Aim: To translate and culturally adapt IPOS to the Greek population. Methods: A four phases- sequential study, which included verification of conceptual equivalence, double forward- backward translations and conceptual cognitive debriefing. Focus group interviews used 'think aloud' and 'verbal probing' techniques. Interviews were audio-recorded, transcribed verbatim and thematically analyzed using predefined categories. Purposely sampled from two oncology and palliative care units in Athens. Results: The Integrated Palliative Care Outcome Scale was well accepted by both patients and health professionals. Overall comprehension and acceptability of the scale were good. The comprehension and judgement challenges identified in the pre-final version were successfully resolved in the cognitive interviewing phase. Five out of the seventeen translated items of the scale were modified after cognitive debriefing. Comprehension difficulties were identified with specific terms (e.g., energy/feeling depressed) and with some answer options. Severity of symptoms and not their impact was a common difficulty. A judgement challenge was reported in relation to 7-days recall and fluctuation of symptoms. Layout concerns in relation to length of questions were also stated. All questions were considered important and none as inappropriate. Conclusion: This study demonstrated face and content validity and acceptability of the Integrated Palliative Care Outcome Scale in the Greek context. Cognitive Interviewing proved valuable in refining concepts within the specific cultural context. Clinical implications: The IPOS outcome measure tool is now being used routinely in a palliative care service in Athens and is currently used to evaluate service outcomes. [ABSTRACT FROM AUTHOR]

Background: We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods: Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results: Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions: With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. [ABSTRACT FROM AUTHOR]

Background A 'blended' (e-learning and facilitated workshops) training course for Group C staff (i.e. staff with relatively infrequent contact with end of life care) has been delivered across several English counties with the aim of improving end of life care in nursing and residential care homes. This paper evaluates the impact of the course on participants' understandings of and confidence in delivering end of life care in one nursing home, while also considering barriers to change in practice. Methods A mixed-methods case study approach, incorporating pre- and post-course questionnaires (SHA East of England End of Life Care Education Programme 'ABC' Project Work Force C or Non Nurse Workforce B Pre and Post Course Questionnaire; E-Learning in End of Life Care Study Pre and Post Course Questionnaire), documentary analysis, semi-structured interviews, and observation of course workshops. Participants were 20 members of staff at a nursing home in a city in the East of England, including 14 Health Care Assistants (carers) and 6 others (administrative, activities, hosting, and catering staff). The questionnaires and interviews assessed understandings of and confidence towards end of life care delivery. Results Improvements in participants' confidence in delivering end of life care were observed, particularly in the core competency areas of symptom management, communication, and advance care planning. A shift towards more detailed and more holistic understandings of end of life care was in evidence; some participants also championed end of life care in the home as a result of the course. Several barriers to changes in practice were encountered, including uneven participation, the absence of mechanisms for disseminating new insights and knowledge within the home, and a widespread perception that nurses' professional dominance in the home made sustainable change difficult to enact. Conclusions While blended e-learning courses have the potential to generate positive change in participants' understandings of and confidence about End of Life Care, organizational and inter-professional obstacles must be overcome in order to translate these changes into improved end of life care delivery in nursing (and residential) homes. [ABSTRACT FROM AUTHOR]

Background: This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Methods: Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Results: Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. Conclusions: This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

Background: Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods: Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results: The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being 'actively treated', and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to. Conclusions: Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families [ABSTRACT FROM AUTHOR]

Background: Palliative care (PC) can reduce symptom distress and improve quality of life for patients and their families experiencing life-threatening illness. While the need for PC in Kenya is high, PC service delivery and research is limited. Qualitative research is needed to explore potential areas for PC research and support needed to enable that research. This insight is critical for informing a national PC research agenda and mobilizing limited resources for conducting rigorous PC research in Kenya. Objectives: To explore perceptions of priority areas for PC research and support needed to facilitate rigorous research from the perspective of Kenyan PC providers and leaders. Methods: Focus groups (FGs) were conducted in November and December of 2018 using a semi-structured interview guide. FGs were audio-recorded, transcribed, and analyzed using a thematic content analysis approach. Results: Three FGs were conducted (n = 22 participants). Ten themes related to PC research emerged, including research on: 1) beliefs about death, disease, and treatment to inform PC; 2) awareness about PC, 3) integration of PC within the health system; 4) understanding caregiver experiences and needs; 5) community health volunteers (CHVs) and volunteer programs; 6) evaluation of costs and benefits of PC; 7) treatment approaches, including complementary and alternative medicine (CAM) and advanced diagnostics at end of life; 8) other suggestions for research, 9) populations in need of PC research; and 10) resources for enabling research. Conclusions: Kenyan PC providers and leaders identified key areas requiring increased scientific inquiry and critical resources needed to enable this research. These findings can help to focus future PC research in Kenya and encourage funding agencies to prioritize the issues identified. [ABSTRACT FROM AUTHOR]

Background: In the last phase of their lives, people living with dementia often indicate restlessness, anxiety or pain. Further, their care is considered inadequate, as they are, for example, sometimes overtreated for curative care or undertreated for pain management. These patients also face multiple barriers in accessing palliative care. This qualitative study explores the perception of experts about how people living with dementia in Germany are cared for at home toward the end of their lives. Methods: A total of 12 experts involved in outpatient/palliative care were recruited to constitute a purposive, heterogeneous sample. Interviews, which were structured using an interview guide, were conducted with physicians, nurses, representatives of health insurance funds, welfare associations, municipal counselling centres, scientists and coordinators of outpatient palliative care and voluntary work; the interviews were transcribed and analysed via thematic content analysis, based on Kuckartz's method. Results: The analysis of the results led to the establishment of four main categories that focused on formal care arrangements, the roles of relatives in care arrangements, the specifics of dementia, and restrictions on access to palliative care. Conclusions: Suitable end-of-life care for people living with dementia and support for their relatives require resources and the conceptualisation of specific care arrangements to help minimise potential barriers that prevent access to palliative care. [ABSTRACT FROM AUTHOR]

Background: The number of palliative care patients with complex needs is increasing in developed countries. In addition to physical aspects and symptom control, psychosocial aspects are of great importance for palliative care patients. The aim of this study was to understand which psychosocial aspects are important to patients, relatives and health professionals within the setting of a palliative care unit in comparison with specialised palliative home-care (SPHC). Methods: We used a qualitative design based on semistructured interviews, which were coded via qualitative content analysis. The study took place in the state of Hesse, Germany, and data collection was conducted in 2017 (interviews from the ELSAH study, which was conducted in a SPHC) and 2018 (supplementary interviews conducted in a palliative care unit). The results from both settings were compared. Results: In the palliative care unit, 10 health professionals, 11 patients and 8 relatives were interviewed. In the outpatient setting, we interviewed 30 health professionals, 14 patients and 14 relatives. We identified four key psychosocial issues related to palliative care that were relevant in both the inpatient and outpatient settings: care planning, patient-centred care, a protected environment with feelings of safety, and psychological well-being. In addition, immediate availability of medical staff, greater relief of the relatives and better accessibility of psychological care were more important in the inpatient setting than in the specialised palliative home care setting. Conclusions: Knowledge and application of the identified key issues may improve patient-centred palliative care. Accessibility of psychological care and immediate availability of medical staff may be important factors for enhancing psychological well-being in the inpatient palliative care setting. Consideration of the identified key issues may help to develop more collaborative transitions between the palliative care unit and the SPHC and may help to provide palliative care patients and their families with care that is appropriate and feasible for them. Trial registration: The underlying comparative study of the outpatient setting of specialised palliative home-care (ELSAH) was registered within the German Clinical Trials Register DRKS-ID: DRKS00012421, (https://drks.de/search/de/trial/DRKS00012421) on 19th May 2017. [ABSTRACT FROM AUTHOR]

Background: Nurturing effective physician-patient relationships is essential to the provision of patient-centred care. Palliative care physicians may apply boundary-crossings or breaches in professional standards to nurture effective physician-patient relationships. Being highly individualized and shaped by the physician's narratives, clinical experience, and contextual considerations, boundary-crossings are susceptible to ethical and professional violations. To better appreciate this concept, we employ the Ring Theory of Personhood (RToP) to map the effects of boundary-crossings on the physician's belief systems. Methods: As part of the Tool Design SEBA methodology, a Systematic Evidence-Based Approach (SEBA) guided systematic scoping review was employed to guide the design of a semi-structured interview questionnaire with palliative care physicians. The transcripts were simultaneously content and thematically analysed. The themes and categories identified were combined using the Jigsaw Perspective and the resulting domains formed the basis for the discussion. Results: The domains identified from the 12 semi-structured interviews were catalysts and boundary-crossings. Boundary-crossings attempt to address threats to a physician's belief systems (catalysts) and are highly individualized. Employ of boundary-crossings depend on the physician's sensitivity to these 'catalysts', their judgement and willingness to act, and their ability to balance various considerations and reflect on their actions and their ramifications. These experiences reshape belief systems, understandings of boundary-crossings and may influence decision-making and practice, underscoring the potential for greater professional breaches when unchecked. Conclusion: Underlining its longitudinal effects, the Krishna Model underscores the importance of longitudinal support, assessment and oversight of palliative care physicians, and lays the foundation for a RToP-based tool to be employed within portfolios. [ABSTRACT FROM AUTHOR]

Background: The Abbey Pain Scale (APS), an observational scale used to assess pain in people with end-stage dementia, is also widely used in Sweden to assess pain in patients with advanced cancer. It is unclear whether the APS is appropriate in this context. This study aims to explore physicians' and nurses' experiences of using a Swedish translation of the APS (the APS-SE) in people with advanced cancer. Methods: Conventional qualitative content analysis was used to analyse interviews with physicians (n = 6) and nurses (n = 6) working in oncology and specialised palliative care about their experiences of using the APS-SE. Results: Three categories were created: fills a need, not always on target, and does not fully suit the clinical situation. Participants reported that although the APS-SE provides support in a challenging situation, it sometimes misses the mark: it does not distinguish well between pain and other types of suffering and its pain score tends not to reflect professionals' intuitive perceptions of patients' suffering. Some parts of the APS-SE were not considered useful, and others were perceived as ethically questionable. Conclusion: Health professionals greatly need an observational pain assessment tool for people with advanced cancer. The APS-SE is helpful in this context, but participants did not perceive it as ideal. Its problems seem inherent to the original APS rather than related to its translation from English to Swedish. Further research is needed to provide a more suitable pain assessment tool for patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Background: The challenge of an ageing population and consequential increase of long term conditions means that the number of people requiring palliative care services is set to increase. One UK hospice is introducing new information and communication technologies to support the redesign of their community services; improve experiences of existing patients; and allow efficient and effective provision of their service to more people. Community Palliative Care Nurses employed by the hospice will be equipped with a mobile platform to improve communication, enable accurate and efficient collection of clinical data at the bedside, and provide access to clinical records at the point of care through an online digital nursing dashboard. It is believed that this will ensure safer clinical interventions, enable delegated specialist care deployment, support the clinical audit of patient care and improve patient safety and patient/carer experience. Despite current attempts to evaluate the implementation of such technology into end of life care pathways, there is still limited evidence supporting the notion that this can be sustained within services and implemented to scale. This study presents an opportunity to carry out a longitudinal evaluation of the implementation of innovative technology to provide evidence for designing more efficient and effective community palliative care services. Methods: A mixed methods approach will be used to understand a wide range of organisational, economic, and patient-level factors. The first stage of the project will involve the development of an organisational model incorporating proposed changes resulting from the introduction of new novel mobile technologies. This model will guide stage two, which will consist of gathering and analysing primary evidence. Data will be collected using interviews, focus groups, observation, routinely collected data and documents. Discussion: The implementation of this new approach to community-based palliative care delivery will require significant changes to established working patterns. This new service delivery model is being developed by the Hospice in collaboration with a team of international academic, industry, and clinical commissioning service improvement specialists. The findings from this initial evaluation will provide valuable baseline evidence regarding the delivery of palliative and end-of-life care services. [ABSTRACT FROM AUTHOR]

Background The nationwide integration of palliative care best practices into general care settings is challenging but important in improving the quality of palliative care. This is why the Dutch National Quality Improvement Programme for Palliative Care has recently been launched. This four-year programme consists of about 70 implementation trajectories of best practices. A large evaluation study has been set up to evaluate this national programme and separate implementation trajectories. Methods/design This paper presents the protocol of the evaluation study consisting of a quantitative effect evaluation and a qualitative process evaluation. The effect evaluation has a pre-test post-test design, with measurements before implementation (month 0) and after implementation (month 9) of a best practice. Patients are eligible if they have a life expectancy of less than six months and/or if they are undergoing palliative treatment and provided they are physically and mentally capable of responding to questionnaires. Bereaved relatives are eligible if they have been involved in the care of a deceased patient who died after a sickbed between six weeks and six months ago. Three types of measurement instruments are used: (1) numerical rating scales for six symptoms (pain, fatigue, breathlessness, obstipation, sadness and anxiety), (2) the Consumer Quality Index Palliative Care - patient version and (3) the version for bereaved relatives. The process evaluation consists of analysing implementation plans and reports of the implementation, and individual and group interviews with healthcare professionals. This will be done nine to eleven months after the start of the implementation of a best practice. Discussion This mixed-method evaluation study gives more insight into the effects of the total programme and the separate implementation trajectories. However, evaluation of large quality improvement programmes is complicated due to changing, non-controlled environments. Therefore, it is important that an effect evaluation is combined with a process evaluation. [ABSTRACT FROM AUTHOR]

Background: Providing end of life care in rural areas is challenging. We evaluated in a pilot whether nurse practitioner (NP)-led care, including clinical care plans negotiated with involved health professionals including the general practitioner(GP), ± patient and/or carer, through a single multidisciplinary case conference (SMCC), could influence patient and health system outcomes. Methods: Setting -- Australian rural district 50 kilometers from the nearest specialist palliative care service. Participants: Adults nearing the end of life from any cause, life expectancy several months. Intervention- NP led assessment, then SMCC as soon as possible after referral. A clinical care plan recorded management plans for current and anticipated problems and who was responsible for each action. Eligible patients had baseline, 1 and 3 month patient-reported assessment of function, quality of life, depression and carer stress, and a clinical record audit. Interviews with key service providers assessed the utility and feasibility of the service. Results: Sixty-two patients were referred to the service, forty from the specialist service. Many patients required immediate treatment, prior to both the planned baseline assessment and the planned SMCC (therefore ineligible for enrollment). Only six patients were assessed per protocol, so we amended the protocol. There were 23 case conferences. Reasons for not conducting the case conference included the patient approaching death, or assessed as not having immediate problems. Pain (25 %) and depression (23 %) were the most common symptoms discussed in the case conferences. Ten new advance care plans were initiated, with most patients already having one. The NP or RN made 101 follow-up visits, 169 phone calls, and made 17 referrals to other health professionals. The NP prescribed 24 new medications and altered the dose in nine. There were 14 hospitalisations in the time frame of the project. Participants were satisfied with the service, but the service cost exceeded income from national health insurance alone. Conclusions: NP-coordinated, GP supported care resulted in prompt initiation of treatment, good follow up, and a care plan where all professionals had named responsibilities. NP coordinated palliative care appears to enable more integrated care and may be effective in reducing hospitalisations. [ABSTRACT FROM AUTHOR]

Background: This study is part of a larger project called ViSam and includes testing of a decision support system developed and adapted for older people on the basis of M (R) ETTS (Rapid Emergency Triage and Treatment System). The system is designed to allow municipal nurses to determine the optimal level of care for older people whose health has deteriorated. This new system will allow more structured assessment, the patient should receive optimal care and improved data transmission to the next caregiver. Methods: This study has an explanatory approach, commencing with quantitative data collection phase followed by qualitative data arising from focus group discussions over the RNs professional experience using the Decision Support system. Focus group discussions were performed to complement the quantitative data to get a more holistic view of the decision support system. Results: Using elements of the decision support system (vital parameters for saturation, pain and affected general health) together with the nurses' decision showed that 94 % of the older persons referred to hospital were ultimately hospitalized. Nurses felt that they worked more systematically, communicated more effectively with others and felt more professional when using the decision support system. Conclusions: The results of this study showed that, with the help of a decision support system, the correct patients are sent to the Emergency Department from municipal home care. Unnecessary referrals of older patients that might lead to poorer health, decreased well-being and confusion can thus be avoided. Using the decision support system means that healthcare co-workers (nurses, ambulance/emergency department/district doctor/SOS alarm) begin to communicate more optimally. There is increased understanding leading to the risk of misinterpretation being reduced and the relationship between healthcare co-workers is improved. However, the decision support system requires more extensive testing in order to enhance the evidence base relating to the vital parameters among older people and the use of the decision support system. [ABSTRACT FROM AUTHOR]

Background: Being a mentor in any setting brings challenges in addition to recognised benefits. Working in a low-income country confers specific challenges including logistical and communication issues. The need to adequately support UK-based international health volunteers prior to, during and after their trip is recognised at government level. Whilst the need to support mentors is recognised little is known about their support needs. This study aims to explore the lived experience of mentorship in a low-income country and gain insight into mentors' support and information needs and the barriers and facilitators to mentoring. Methods: Purposive sampling was used to recruit UK-employed, palliative care clinicians: four consultants, two specialty trainees, and two nurses, who were mentors with an international palliative care project. Semi-structured telephone interviews were recorded and analysed using interpretive phenomenological analysis. Results: Participants became mentors to help others. Uncertainty about their achievements constituted a significant challenge. This study highlights the need to prepare mentors before their in-country visits by exploring motivation, describing the reality of international volunteering and ensuring realistic expectations. Post-trip debriefing is important for reducing uncertainty around trip outcomes and maximising transferable impacts. Challenges to mentoring were logistical, related to the concept of mentorship and cultural. Facilitators included shared passion, mentor credibility and serendipity. Conclusion: Awareness of the support needs of mentors and the facilitators and challenges to mentoring can improve mentor preparation and support. This may minimise potential negative emotional impact of being a mentor, maximise positive personal and professional impacts and improve in-country project impact. [ABSTRACT FROM AUTHOR]

Background: Implementation of quality improvements in palliative care (PC) is challenging, and detailed knowledge about factors that may facilitate or hinder implementation is essential for success. One part of the EU-funded IMPACT project (IMplementation of quality indicators in PAlliative Care sTudy) aiming to increase the knowledge base, was to conduct national studies in PC services. This study aims to identify factors perceived as barriers or facilitators for improving PC in cancer and dementia settings in Norway. Methods: Individual, dual-participant and focus group interviews were conducted with 20 employees working in different health care services in Norway: two hospitals, one nursing home, and two local medical centers. Thematic analysis with a combined inductive and theoretical approach was applied. Results: Barriers and facilitators were connected to (1) the innovation (e.g. credibility, advantage, accessibility, attractiveness); (2) the individual professional (e.g. motivation, PC expertise, confidence); (3) the patient (e.g. compliance); (4) the social context (e.g. leadership, culture of change, face-to-face contact); (5) the organizational context (e.g. resources, structures/facilities, expertise); (6) the political and economic context (e.g. policy, legislation, financial arrangements) and (7) the implementation strategy (e.g. educational, meetings, reminders). Four barriers that were particular to PC were identified: the poor general condition of patients in need of PC, symptom assessment tools that were not validated in all patient groups, lack of PC expertise and changes perceived to be at odds with staff's philosophy of care. Conclusion: When planning an improvement project in PC, services should pay particular attention to factors associated with their chosen implementation strategy. Leaders should also involve staff early in the improvement process, ensure that they have the necessary training in PC and that the change is consistent with the staff's philosophy of care. An important consideration when implementing a symptom assessment tool is whether or not the tool has been validated for the relevant patient group, and to what degree patients need to be involved when using the tool. [ABSTRACT FROM AUTHOR]

Background: This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care. Methods: Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care. Results: Our study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was "sick enough to die". Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient's admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die. Conclusion: While a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life. [ABSTRACT FROM AUTHOR]

Background: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. Methods: An ethnographic study in two nursing homes where the was delivered. The Compassion Intervention Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals. Results: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions. Conclusions: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings. [ABSTRACT FROM AUTHOR]

Background: Breathlessness is the most common and intrusive symptom of advanced non-malignant respiratory and cardiac conditions. The Breathlessness Intervention Service (BIS) is a multi-disciplinary complex intervention, theoretically underpinned by a palliative care approach, utilising evidence-based non-pharmacological and pharmacological interventions to support patients with advanced disease in managing their breathlessness. Having published the effectiveness and cost effectiveness of BIS for patients with advanced cancer and their carers, we sought to establish its effectiveness, and cost effectiveness, in advanced non-malignant conditions.Methods: This was a single-centre Phase III fast-track single-blind mixed method RCT of BIS versus standard care for breathless patients with non-malignant conditions and their carers. Randomisation was to one of two groups (randomly permuted blocks). Eighty-seven patients referred to BIS were randomised (intervention arm n = 44; control arm n = 43 received BIS after four-week wait); 79 (91 %) completed to key outcome measurement. The primary outcome measure was 0-10 numeric rating scale for patient distress due to breathlessness at four weeks. Secondary outcome measures were Chronic Respiratory Questionnaire, Hospital Anxiety and Depression Scale, Client Service Receipt Inventory, EQ-5D and topic-guided interviews.Results: Qualitative analyses showed the positive impact of BIS on patients with non-malignant conditions and their carers; quantitative analyses showed a non-significant greater reduction in the primary outcome ('distress due to breathlessness'), when compared to standard care, of -0.24 (95 % CI: -1.30, 0.82). BIS resulted in extra mean costs of £799, reducing to £100 when outliers were excluded; neither difference was statistically significant. The quantitative findings contrasted with those previously reported for patients with cancer and their carers, which showed BIS to be both clinically and cost effective. For patients with non-malignant conditions there was a notable trend of improvement over both trial arms to the key measurement point; participants may have experienced a therapeutic effect from the research interviews, diluting the intervention's impact.Conclusions: BIS had a statistically non-significant effect for patients with non-malignant conditions, and slightly increased service costs, but had a qualitatively positive impact consistent with findings for advanced cancer. Trials of palliative care interventions should consider multiple, mixed method, primary outcomes and ensure that protocols limit potential contaminating therapeutic effects in study designs.Trial Registration: Current Controlled Trials ISRCTN04119516 (December 2008); ClinicalTrials.gov NCT00678405 (May 2008). [ABSTRACT FROM AUTHOR]

Background: General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care. Method: The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings. Results: The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous. Conclusion: This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities. [ABSTRACT FROM AUTHOR]

Background: With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution. Methods: Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-participant observation of general care and decisions, followed by case studies where treatment limitation decisions, comfort care and/or end of life discussions were occurring. These involved: semi-structured interviews with consenting families, where possible, patients; direct observations of care; and review of medical records. Results: Initial non-participant observation included daytime, evenings, nights and weekends. The cases were 16 patients with varied diagnoses, aged 19-87 years; 19 family members were interviewed, aged 30-73 years. Cases were observed for <1 to 156 days (median 22), depending on length of ICU admission. Decisions were made serially over the whole trajectory, usually several days or weeks. We identified four trajectories with distinct patterns: curative care from admission; oscillating curative and comfort care; shift to comfort care; comfort care from admission. Some families considered decision-making a negative concept and preferred uncertainty. Conflict occurred most commonly in the trajectories with oscillating curative and comfort care. Conflict also occurred inside clinical teams. Families were most often involved in decision-making regarding care outcomes and seemed to find it easier when patients switched definitively from curative to comfort care. We found eight categories of decision-making; three related to the care outcomes (aim, place, response to needs) and five to the care processes (resuscitation, decision support, medications/ fluids, monitoring/interventions, other specialty involvement). Conclusions: Decision-making in critical illness involves a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When measures oscillate between curative and comfort there is greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including DNAR. Offering further support, possibly with expert palliative care, communication, and discussion of ‘trial of treatment' may be beneficial at this time, rather than waiting until the ‘end of life’. [ABSTRACT FROM AUTHOR]

Background: Physical activity has been shown to positively impact cancer-related fatigue, physical functioning and quality of life outcomes in early stage cancer patients, however its role at the end stage of cancer has yet to be determined. Brain metastases are amongst the most common neurological complications of advanced cancer, with significant deterioration in fatigue and quality of life. The purpose of the present study was to examine the physical activity interests and preferences of cancer patients with brain metastases initiating palliative whole brain radiotherapy. Methods: Thirty-one patients aged 18 years or older, cognitively intact, diagnosed with brain metastases, and with Palliative Performance Scale scores of greater than 30 %, were recruited from a multidisciplinary outpatient brain metastases clinic. An interviewer-administered survey was used to assess physical activity interests and preferences of participants who were embarking upon palliative whole brain radiotherapy. Results: 87 % (n = 27) of participants felt that physical activity was important, however there was limited interest in n participating in a structured program at the onset of palliative whole brain radiotherapy. Lung cancer diagnosis was associated with being less interested in participating in a physical activity program, and feeling less able to participate in a physical activity program at the onset of palliative whole brain radiotherapy. Conclusions: Cancer patients with brain metastases demonstrate limited interest and varied preferences for physical activity during palliative whole brain radiotherapy. Additional pilot work with this patient population is needed before physical activity interventions can be tested in clinical research. [ABSTRACT FROM AUTHOR]

Background: Although heart failure has a worse prognosis than some cancers, patients often have restricted access to well-developed end of life (EoL) models of care. Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care. Methods: A qualitative in-depth interview study nested in a wider ethnographic study of unplanned admissions in patients with heart failure (HoldFAST). We interviewed 24 HCPs across primary, secondary and community care in three locations in England, UK -- the Midlands, South Central and South West. Results: The study revealed three issues impacting on EoL care for heart failure patients. Firstly, HCPs discussed approaches to communicating with patients about death and highlighted the challenges involved. HCPs would like to have conversations with patients and families about death and dying but are aware that patient preferences are not easy to predict. Secondly, professionals acknowledged difficulties recognising when patients have reached the end of their life. Lack of communication between patients and professionals can result in situations where inappropriate treatment takes place at the end of patients' lives. Thirdly, HCPs discussed the struggle to find alternatives to hospital admission for patients at the end of their life. Patients may be hospitalised because of a lack of planning which would enable them to die at home, if they so wished. Conclusions: The HCPs regarded opportunities for patients with heart failure to have ongoing discussions about their EoL care with clinicians they know as essential. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended. Further research is needed to develop prognostic models to indicate when a transition to palliation is required and to evaluate specialist palliative care services where heart failure patients are included. [ABSTRACT FROM AUTHOR]

Background: Nursing home and home care nursing staff must increasingly deal with palliative care challenges, due to cost cutting in specialized health care. Research indicates that a significant number of dying patients long for adequate spiritual and existential care. Several studies show that this is often a source of for care workers. anxiety Teaching care workers to alleviate dying patients' spiritual and existential suffering is therefore important. The aim of this study is to illuminate a pioneering Norwegian' experience with teaching mobile hospice nurse teaching teams and training care workers in spiritual and existential care for the dying in nursing homes and home care settings. Methods: The team of expert hospice nurses participated in a focus group interview. Data were analyzed using a phenomenological hermeneutical method. Results: The taught care workers to identify spiritual and existential suffering, initiate mobile teaching team existential and spiritual conversations and convey consolation through active presencing and silence. The team members transferred their personal spiritual and existential care knowledge through situated "bedside teaching" and reflective dialogues. "The perceived that the care workers benefitted from the situated mobile teaching team teaching because they observed that care workers became more courageous in addressing dying patients' spiritual and existential suffering. Discussion: Educational research supports these results. Studies show that efficient workplace teaching schemes allow expert practitioners to teach staff to integrate several different knowledge forms and skills, applying a holistic knowledge approach. One of the features of workplace learning is that expert nurses are able to guide novices through the complexities of practice. Situated learning is therefore central for becoming proficient. Conclusions: Situated bedside teaching provided by expert mobile hospice nurses may be an efficient way to develop care workers' courage and competency to provide spiritual and existential end-of-life-care. Further research is recommended on the use of mobile expert nurse teaching teams to improve nursing competency in the primary health care sector. [ABSTRACT FROM AUTHOR]

Background: Dementia, of all long term illnesses, accounts for the greatest chronic disease burden, and the number of people with age-related diseases like dementia is predicted to double by 2040. People with advanced dementia experience similar symptoms to those dying with cancer yet professional carers find prognostication difficult and struggle to meet palliative care needs, with physical symptoms undetected and untreated. While elements of good practice in this area have been identified in theory, the factors which enable such good practice to be implemented in real world practice need to be better understood. The aim of this study was to determine expert views on the key factors influencing good practice in end of life care for people with dementia. Methods: Semi-structured telephone and face-to-face interviews with topic guide, verbatim transcription and thematic analysis. Interviews were conducted with experts in dementia care and/or palliative care in England (n = 30). Results: Four key factors influencing good practice in end of life care for people with dementia were identified from the expert interviews: leadership and management of care, integrating clinical expertise, continuity of care, and use of guidelines. Conclusions: The relationships between the four key factors are important. Leadership and management of care have implications for the successful implementation of guidelines, while the appropriate and timely use of clinical expertise could prevent hospitalisation and ensure continuity of care. A lack of integration across health and social care can undermine continuity of care. Further work is needed to understand how existing guidelines and tools contribute to good practice. [ABSTRACT FROM AUTHOR]

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from lifethreatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Methods/Design Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. Discussion This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe. [ABSTRACT FROM AUTHOR]

Background: Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. Methods: Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. Results: Three dimensions were found to be crucial for understanding and analysing WTD statements: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical ‘meanings’ were identified in the study, including “to let death put an end to severe suffering”, “to move on to another reality”, and--more frequently--“to spare others from the burden of oneself”. Conclusions: The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients. [ABSTRACT FROM AUTHOR]