Yes / Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. Methods and analysis: To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme. Ethics and dissemination: Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested. / Marie Curie Cancer Care

Background: The need for palliative care and end-of-life care increases as the world population grows older and as people, more extensively, suffer from chronic diseases. End-of-life care is described as a part of palliative care and people in need of end-of-life care can be met anywhere in the health care system, therefore, education about end-of-life care is necessary for nursing students. Assisted suicide, or, euthanasia is legal in Belgium and can also be a part of end-of-life care, which makes it a convenient subject to include in nursing education in Belgium.Aim: The aim was to delve into the experiences of nursing students in Belgium regarding their education in end-of-life care.Method: The school project had a qualitative-descriptive design, with an inductive approach, and was analyzed through a qualitative content analysis.Result: The results describe how Belgian nursing students experience end-of-life care, their perception of euthanasia and their satisfaction with their end-of-life care education.Conclusion: Belgian nursing students are in general pleased with their education in end-of-life care. However, there is still room for development regarding education in end-of-life care and euthanasia.

Background: Nurses continuously meets and cares for dying patients, which can be perceived as both rewarding and stressful. To manage death and dying patients adequately, nurses need to reflect on what death means and her/his own perception of death and dying. Research showed that many nurses felt that they had a lack of knowledge and practical skills regarding end of life care. Objective: The purpose of this study was to illuminate nurses’ experiences of caring for patients in end-of-life care. Method: A literature-based study was used, based on analysis of qualitative data. Thirteen articles were analysed according to Friberg´s five-step model. The analysis resulted in four themes and eight subthemes. Results: Four main themes emerged from the analysis: 1) Deficient environment and organization 2) Deficient knowledge and practical skills 3) Support is an important factor 4) Response to end-of-life care. Conslusion: Education and training in end-of-life care was important. This should be implemented more, both in nursing education and in clinical practice. Support from management and colleagues was highly valued by nurses and should occur to a greater extent, as a way of preventing negative effects, such as burnout, and as a way of improving the care of dying patients and their relatives.

This study was motivated by the researcher’s experience of working in end-of-life care and by the literature review which revealed a gap in the knowledge and understanding of the role of religious methods as complementary approaches in managing the experience of living with a life-limiting illness in Taiwan. Trans-cultural issues are extremely important to end-of-life care. In Taiwan, patients approaching death have used religious methods as complementary approaches to manage the experience of living with a life-limiting illness, and religious belief systems shape patients’ understandings of what is happening. Current literature coupled with the experience of palliative care personnel identified that some patients with religious persuasions were refusing western medical treatments when they recognised that they were in the end stage of disease because they believed that these treatments could not control death and rebirth. However, few studies have discussed this experience and its meaning. Buddhist chaplains, as providers of supportive palliative care services through therapeutic care, have presented their understanding of the way that people move towards death and dying in Buddhist temples, universities, and in public speeches, but not often in hospitals. Buddhist chaplains’ life experience and interpretations influence the thinking processes and decision-making of many of those they come in contact with, especially those who share the Buddhist faith. However, few studies have demonstrated the way in which patients have made use of religious methods as complementary approaches from the perspective of hospice palliative Buddhist chaplains. The perspectives and work of hospice palliative Buddhist chaplains regarding “hospice palliative care” and patients’ use of religious methods as complementary approaches in end-of-life care in Taiwan were explored. The research questions were: (1) How do the Buddhist chaplains define “hospice palliative care”? (2) How do Buddhist chaplains use Buddhist religious methods as complementary approaches in clinical end-of-life care? (3) What are the experiences of Buddhist chaplains regarding the patients’ use of Buddhist religious methods as complementary approaches in clinical end-of-life care? (4) What are the opinions of Buddhist chaplains regarding patients’ use of Buddhist religious methods as complementary approaches in clinical end-of-life care? Charmaz’s (2006) constructivist grounded theory method was adopted. Data collection used triangulation and included demographic questionnaires, semi-structured face-to-face interviews, field notes, and written memos. Purposive sampling was used to recruit participants with rich working experiences in clinical end-of-life care. Twenty female and two male Buddhist chaplains aged between 33 and 67 years old participated. Charmaz’s (2006) constructivist grounded theory, which included comparative method, and three analytical phases (initial coding, focused coding and theoretical coding) informed the data analysis. The findings demonstrate that Buddhist concepts of death, the process of dying, and the ethics and tools of the Buddhist religion formed the basis of the practice of the chaplains who regarded compassionate care and Mahayana Buddhism as the main content of Buddha’s teachings. All participants used aspects of Buddhist philosophy to define “hospice palliative care”. The final theoretical framework emerged from the data to provide a structure to interpret “the dynamic process of compassionate care”. Compassionate care is a multifaceted, dynamic phenomenon practised by the chaplains. Mahayana Buddhism provides the specific tools through which they interacted with patients creating a sacred relationship that allowed patients to understand their context and cope with their end-of-life experiences. The thesis concluded that Buddhist chaplains’ understanding of compassionate care was influenced by their educational background, hospice training courses, and Buddha’s teachings to enable them to play important roles in end-of-life care in Taiwan. Recommendations are made for future studies to test the theoretical framework regarding “the dynamic process of compassionate care” with different professional staff such as nurses, psychologists and mental health physicians. The findings are also relevant for future government policy concerning the financial cost of end-of-life care which is currently provided by Buddhist chaplains from a Charity rather than by Taiwanese National Health Insurance. Finally it recommends that the findings inform the future education of medical and nursing students and staff in hospice end-of-life care in Taiwan.

Identifying people with advanced illnesses whose health is deteriorating, assessing their needs and planning care proactively with them are healthcare priorities given the demographic trend of ageing populations in the UK and internationally. Over the past 10 years (2004-2014), I have led a series of research studies that have made an important academic contribution to improving palliative care services for patients with heart disease and advanced multimorbidity. My first paper reported secondary analysis of data generated from a qualitative study of the illness and care experiences of patients with advanced heart failure. This work used innovative, qualitative research methods to explore and understand patient, carer and health professional perspectives over time. My second study then evaluated whether health and social care services were configured and delivered in response to the needs of people with heart failure and their families. This led me to recommend an anticipatory care framework which integrated a palliative care approach with other aspects of treatment and care. Around this time, advance care planning (planning ahead to facilitate end-of-life care aligned with people’s goals and preferences) was being strongly advocated by NHS health policy makers despite limited research in the UK. For my third study, I evaluated an evidence-based, educational intervention for general practitioners while also exploring barriers and facilitators to advance care planning in primary care for patients with cancer or other advanced conditions. It was becoming increasingly clear that failure to identify people with deteriorating health and a high risk of dying in a timely way was a major barrier to more effective palliative care. The problem was greatest for patients with non-malignant conditions whose illness trajectory is much less easy to predict than in cancer populations. I therefore started to research and develop a new clinical tool designed to prompt early, proactive patient identification in routine clinical practice – the Supportive and Palliative Care Indicators Tool (SPICT). My fourth research paper reported an evaluation of the SPICT in a mixed-methods study in a large tertiary care hospital. The SPICT was then used to identify people with multimorbidity for my fifth study, a longitudinal exploration of patient and carer experiences of hospital admission and ongoing community care. In my final paper, I drew on my previous research and combined this with well-developed approaches to timely identification and effective communication. I described the design of a successful pilot randomised trial of future care planning with people who had advanced heart disease and their carers. This thesis presents a critical review of these six research studies setting them in context and demonstrating the impact they have had in ensuring that high quality research evidence informs current and future developments in palliative care policy and clinical practice.

Background: About 80 percent of the people dying in Sweden are considered to have been in need of palliative care. When death is approaching, due to age or illness, the ill person's and the relatives' needs must be met which is the main aim of palliative care. It has been increasingly common that people choose to be cared for in their own home in the end of life and therefore knowledge of the relatives' experience is important for the healthcare professionals. Aim: To highlight relatives' experience of palliative care at the end of life in the dying person's home. Method: A literature review based on qualitative studies. Eight articles were analyzed in five steps according to Friberg's qualitative content analysis for literature based studies. Results: Three main themes and six sub-themes emerged through the analysis. The main themes were: To fulfill a wish, To experience security and To be a caregiver. Conclusion: In order for relatives to feel confirmed as caregivers and to preserve a good health it is of great importance that the nurse communicates and makes them feel involved by giving them both support, information and the possibility to participate in the care but also to be unloaded. / Denna studie beskriver hur närstående upplever palliativ vård i hemmet vid livets slutskede. I Sverige väljer allt fler personer att vårdas i sitt hem den sista tiden i livet, vilket innebär att det också är fler närstående som är i behov av vård då även deras hälsa påverkas. Därför är kunskap om de närståendes upplevelser viktig för sjukvården. Resultatet i studien baseras på åtta vetenskapliga artiklar där studiens resultat presenteras i tre huvudteman och sex subteman. Resultatet visade att närstående upplevde ett krav och en förväntan att uppfylla den döende personens önskan. De kände även ett behov av att få stöd och information från sjuksköterskan, men också att vara delaktiga och bli bekräftade. Vårdandet påverkade både de närståendes hälsa och relationen till den döende personen, men genom att sjuksköterskan fanns där som ett stöd för dem kunde den betydelsefulla relationen mellan den döende personen och dennes närstående bevaras. Därför har sjuksköterskans närvaro en betydande roll i hur närstående upplever den palliativa vården vid livets slutskede.

Background: Critical-care nurses (CCN) provide end-of life (EOL) care on a daily basis as one in five patients dies while in Intensive Care Units (ICU). CCNs overcome many obstacles to perform quality EOL care for dying patients. Objectives: The purposes of this study were to collect CCNs' current suggestions for improving EOL care and determine if EOL care obstacles have changed by comparing results to data gathered in 1998. Methods: A 72-item questionnaire regarding EOL care perceptions was mailed to a national, geographically dispersed, random sample of 2,000 members of the American Association of Critical-Care Nurses. Nurses were asked for suggestions to improve EOL care. Results: Of the 509 returned questionnaires, 322 (63.3%) had 385 written suggestions for improving EOL care. Major themes identified were ensuring characteristics of a good death, improving physician communication with patients and families, adjusting nurse/patient ratios to 1:1, recognizing and avoiding futile care, increasing EOL education, physicians who are present and "on the same page," not allowing families to override patients' wishes, and the need for more support staff. When compared to data gathered 17 years previously, major themes remained the same, but in a few cases, changed in order and possible causation. Conclusion: Critical-care nurses' suggestions were similar to those recommendations from 17 years ago. Although the order of importance changed minimally, the number of similar themes indicated obstacles to providing EOL care to dying ICU patients continue to exist over time.

Of the 34,000 children who die annually, over 28,000 are four years old or younger. Nurses working in pediatric intensive care units (PICU) provide end of life (EOL) care before, during, and after death of these children. The purpose of this study was to determine thesuggestions PICU nurses have for improving EOL care for dying pediatric patients and their families. A sample of 1047 PICU nurses, who were members of the American Association of Critical-Care Nurses (AACN), were sent a 70-item questionnaire. One open ended item asked nurses to offer a suggestion for improving EOL care for dying PICU patients. Responses were received from 235 of the 474 (49.6%) nurses who returned the questionnaire. Eight themes were identified: (1) providing a better environment; (2) physician honesty about prognosis; (3) having a plan for dying; (4) ending futile care; (5) physicians on "same page;" (6)having more staff; (7) receiving more EOL education; and, (8) providing better pain control. Patient centered principles begin with creating an environment that allows the dying process to be centered on the family while fostering dignity. Fostering dignity includes providing an environment that is conducive to supporting quality EOL care. The importance of providing privacy and an appropriate place for the patient and family to feel more comfortable during the dying process was suggested. The need for better communication between providers and families, ending suffering, and having enough staff to support a "good death," were also high priorities. PICU nurses overwhelmingly suggested that the environment in which health care workers monitor, care for, and support patients and families during death is thegreatest area for improvement. Unit design teams need to assure that care areas for dying pediatric children are created to accommodate a dignified and peaceful passing to improve pediatric End-of-Life Care.

Palliative care is founded on a holistic attitude, with the goal to alleviate suffering when a cure is no longer possible. Palliative care affirms life and regards dying as a normal process, providing possibilities of a quality time for the patient and family. Studies show that an increasing number of people choose to live the final phase of their life in their own home. A requirement for end of life care is an effective team work, where the nurse is responsible for more advanced care, and the caregiver’s provides the immediate care. The purpose of this study was to gain insight of caregiver’s experiences with patients in end of life care. An interview was conducted with seven caregivers, where the material is processed by a content analysis with qualitative approach. The results showed that the caregivers were engaged in meeting with dying patients and their families. Three themes emerged: to prioritize, to give and receive support, and to care with dignity. The following conclusions were found; Time and continuity is an essential constituent of the care for patients in palliative care. Caregivers should be given time for support and reflection. Skilled personnel with education and good knowledge of palliative care are needed in the care of palliative patients and their families.

Pediatric cancer imposes a threat on the child’s life and approximately every fifth child diagnosed with cancer will die due to his or her disease. The overall aim of this thesis was to explore palliative care of children with cancer and bereaved family members. The thesis includes data collected retrospectively from medical records, a nationwide questionnaire directed to bereaved parents, a nationwide questionnaire for bereaved siblings and individual interviews with children in cancer care. Most children dying from cancer were recognized as being beyond cure at time of death; for some this recognition occurred close to death, leaving little time for potential personal preferences (Paper I). Bereaved parents and siblings noticed extensive suffering in the child close to death (Paper II, VI), with physical fatigue being the most commonly reported symptom irrespectively of age and diagnosis of the child (Paper II). Bereaved parents’ psychological well-being appears to be closely related to experiencing suffering in the dying child (Paper III) but also to high-intensity treatment (with bone marrow transplant as the example) of a child that still dies from his or her disease (Paper IV). Bereaved siblings experience a lack in information at the end of their brother’s or sister’s life and report feeling poorly prepared for the loss. An increased risk of anxiety was seen in siblings whom nobody talked to about what to expect at the time of death of their brother or sister (Paper VI). When caring for children with cancer it is vital to take the individual child’s awareness and preferences regarding information into consideration. Bereaved parents who have communicated with their child about death expressed that this often occurred at the child’s own initiative (Paper V) and simple means such as fairy tales could be used to facilitate communication. Ill children themselves expressed in interviews wanting honest, but still hopeful information regarding bad news (Paper VII). The results of this thesis stress the importance of striving to achieve good communication and keeping a family perspective throughout care of children with cancer.