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.

This thesis aims to illuminate how paediatricians in the United Kingdom (UK) make difficult medical decisions when treating severely disabled children with complex health conditions. In particular, it examines the part played, if any, by law, rights, and ethics in those decisions. After drawing on jurisprudence of the English and European Human Rights Court, together with existing scholarship, to analyse the doctors' decision making, this thesis adopts a legal consciousness theoretical approach. Using this it looks at how the paediatricians make sense of and conceptualise law when making these decisions. It examines how decisions are, by the paediatricians' own accounts, commonly made at present and what the paediatricians say about how they and their colleagues make such decisions. This thesis addresses the following research questions: i) Which decisions do UK paediatricians find particularly difficult when working with disabled children and what makes those decisions particularly difficult? ii) What factors do UK paediatricians take into consideration when making difficult decisions for disabled children and what weight do they put on those factors? iii) What formal education in law, rights, and ethics have the doctors received and to what extent, if any, can we discern how this education impacts on their difficult decisions for disabled children? iv) How do UK paediatricians construct and understand the law, rights, and ethics when making their difficult decisions? This thesis makes an original contribution, being the first in-depth socio-legal study examining UK paediatricians' medical decision-making for severely disabled children, by identifying two distinct styles paediatricians adopt when approaching best interest decisions, and by recommending a new category of legal consciousness. It concludes by recommending research and changes both in doctors' training and approach to best interest decision-making to address the current challenges paediatricians describe facing when deciding for severely disabled children.

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.

Background: Critical care nurses (CCNs) frequently provide end-of-life care for critically ill patients. CCNs may face many obstacles while trying to provide quality EOL care. Some research focusing on obstacles CCNs face while trying to provide quality EOL care has been published; however, research focusing on family behavior obstacles is limited. Research focusing on family behavior as an EOL care obstacle may provide additional insight and improvement in care. Objective: What are the predominant themes noted when CCNs share their experiences of common obstacles, relating to families in providing EOL care? Methods: A random geographically dispersed sample of 2,000 members of the American Association of Critical-Care Nurses was surveyed. Responses from a qualitative question on the questionnaire were analyzed. Results: Sixty-seven EOL obstacle experiences surrounding issues with families' behavior were analyzed for this study. Experiences were categorized into 8 themes. Top three common obstacle experiences included families in denial, families going against patient wishes and advance directives, and families directing care which negatively impacted patients. Conclusions: In overcoming EOL obstacles, it may be beneficial to have proactive family meetings to align treatment goals and to involve palliative care earlier in the ICU stay.

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.

The focus of this study is to explore and examine the views and feelings of United States documented and undocumented immigrants on their final resting place after death, posthumous repatriation, whether there is a need for repatriation, and if a lack of such need is preventing immigrant groups from remaining in the United States and benefiting from end-of-life services such as hospice. A quantitative research method was utilized. The use of a quantitative research method allowed for an expansive look into the use of posthumous repatriation and its effect on hospice use by immigrants. Data were obtained from multiple locations that serve and cater to specific ethnic groups within the region of the Inland Empire in Southern California. Sixty-three immigrants who identified themselves as persons born in a country outside the United States are the sample. This study produced evidence that family plays a major role in end-of-life decisions and argues the need of repatriation by immigrant groups as a potential reason for the underutilization of hospice services. The guarantee of return to their country of origin after death produced greater inclination to use hospice.

Currently in the United States, five states have enacted physician-assisted suicide as a legal end of life option for terminal patients. Research indicates that most patients who have died under this mean have been enrolled in hospice services. With the recent enactment of California’s End of Life Option Act, hospice social workers will find themselves educating and assisting patients and/or their families with this and other end of life decisions. Research has thoroughly examined physician and nurses’ involvement and attitude in the matter, but little has been researched regarding social workers. This study aimed to identify the factors that affect hospice social workers’ attitude towards physician-assisted suicide and how California’s End of Life Option Act affects their practice. In-depth face-to- face interviews with 8 hospice social workers were conducted. The study found that all 8 participants held positive attitudes towards physician-assisted suicide, support the End of Life Option Act, and feel prepared to assist patients and handle requests for the End of Life Option. Factors such as social work values and professional experience have a positive effect and validate their attitude, and factors such as religion does not affect their attitude. Due to low participation, the overall results were limited; therefore, additionally research should be extensively conducted to gain a better understanding. Regardless, a structured physician-assisted suicide protocol for social workers would benefit micro practice and macro developments.

Background: Losing an infant is difficult for parents to face. To improve EOL care for dying neonates and their families, NICU nurses need to overcome obstacles and implement supportive behaviors. Understanding the size of obstacles and supportive behaviors will better enable NICU nurses to provide quality EOL care. Objectives: To determine the largest obstacles and supportive behaviors in NICU EOL care. Methods: A descriptive quantitative study of a random national sample of 1058 NICU nurses who were members of NANN (National Association of Neonatal Nurses). The National Survey of NICU Nurses' Perceptions of End-of-Life Care questionnaire was mailed twice yielding 234 usable questionnaires for a response rate of 26%. Results: Three themes emerged in the top rated obstacles: (a) obstacles related to families, (b) obstacles regarding language and communication, and (c) obstacles concerning ethical dilemmas. The lowest rated obstacles were nurses believing that life-saving measures/treatments were prematurely discontinued and unit visiting hours being too liberal. The top eight supportive behaviors included helping families cope with the infant's death and those involving helpful physician behaviors. Lowest rated supportive behaviors were those related to the nurses' own family death experience and behaviors promoting nurse convenience. Conclusions: Obstacles and supportive behaviors for NICU EOL care have been identified. Issues regarding families, communication, and ethical dilemmas need to be addressed. Efforts should be made to more quickly align the plan of care with the projected outcome to limit both infant suffering and nurse distress from inappropriate use of life-extending measures.