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.

Discussions of autonomy at the end of life in health care contexts is no new phenomenon. However, what seems to have changed in issues of autonomy is cases where patients want to refuse a treatment to cases where patients are demanding more treatment when medical professionals may not agree or be able to provide them with the medical treatment. Some key competing interests impacting patient autonomy include beneficence-doing what is in the best interests of the health or well-being of the patient- and resource limitations. Here, I will explore distributive justice theories that impact the end of life and how they constrain autonomy.

Background: The End of Life Care Strategy stated that there should be a reduction of expected deaths in the acute setting. In order to achieve this goal, when it has been identified that where the patient's preferred place of care is home, clinicians need to be able to recognise when a patient is dying in order to achieve their preferred place of death. The aims of this study were to identify any factors that help or hinder a clinician when they are determining when irreversible dying begins and to seek consensus on which of these topics would be useful to include in an education programme. Method: A 3 stage mixed methods study was developed. Phase 1was a Systematic Review of current primary research in order to provide an evidence base for the study. Phase 2 involved unstructured interviews with clinicians in the acute setting utilising the Grounded Theory approach to the analysis identify potential factors. Phase 3 was a Delphi study used to identify which of these factors would be useful in an education programme. Conclusions: The Systematic Review identified four themes "Patient Observation", "Knowledge of the Patient", "Communication" and "Attitudes of the Clinician". These were confirmed by the interviews and a further theme "Experience" identified. The over-arching theme emerging from the findings of the interviews was that clinicians have a fear of getting the timing of the recognition of irreversible dying wrong because the decision making process is so complex and this is exacerbated by fear of missing the treatable. Many factors identified in the interviews were acknowledged as factors that could be included in an education package. It was also identified that there is the need for a culture shift in society regarding death and dying and a change in the philosophy of care for health care professionals.

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.

Thesis advisor: Megumi Inoue / End-of-life care planning is an opportunity for people to express how they want to spend the final stage of their lives by directing what type of medical treatment they wish or do not wish to receive. The completion of such planning is a way to exercise their autonomy, which is one of the fundamental ethical principles in medicine in the United States. Many older adults in the U.S., however, do not have such a plan or even discuss the topic with anyone. In order to understand the circumstances in which end-of-life planning is enacted, this study investigated two important research questions: (1) What are the sociodemographic and psychosocial factors that enhance or impede the completion of end-of-life planning? (2) How consistent is the content of a living will with the person's actual dying experience? These research questions were developed and examined as an application of expectancy theory, which explains the concepts of motivation and action. A series of logistic regression analyses were conducted. This study analyzed data from the Health and Retirement Study (HRS), which is a nationally representative sample of Americans over the age of 50. The analytic subsample included those who died between 2000 and 2010 (N = 6,668). The study found that persons who were older, who identified themselves as White, who had higher levels of income and education, and who were widowed or separated were more likely to be motivated to complete end-of-life planning. A higher level of sense of mastery was specifically relevant to documentation of living wills. On the other hand, a lower level of religiosity was specifically associated with having a durable power of attorney for health care. In addition, there was a clear connection between a request for palliative care and less troubling pain. Implications include conducting a community- or workplace-based public educational campaign, incorporating a culturally tailored approach for racial/ethnic minorities (e.g. faith-based interventions), using advance directives written in easy to understand language (e.g. Five Wishes), and funding Medicare provision for end-of-life care consultations between doctors and patients during annual physical exams. / Thesis (PhD) — Boston College, 2014. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

Thesis advisor: Kathleen McInnis-Dittrich / Cancer caregivers are key stakeholders across the cancer trajectory, particularly in the final weeks of life and the bereavement period that follows. Current measures are limited in capturing caregiver assessment of the quality of end-of-life (EOL) care. Because none include caregiver perception of patient suffering or prolongation of death, the author sought to develop and validate a new measure of caregiver-perceived quality of EOL care that includes these dimensions. Data for this study comes from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). CwC investigators interviewed cancer patients and caregivers prior to the patient's death, and then caregivers again following the patient's death, on a range of psychosocial issues related to EOL care and bereavement. The present study represents a refinement of the author's previous work in developing and validating the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a comprehensive measure of caregiver-perceived quality of EOL care. Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The author examined the new measure's factor structure, and evaluated its reliability (using Cronbach's α) and convergent validity (via associations between CEQUEL and key EOL outcomes). CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). Higher scores (indicating better perceived quality of care) were positively associated with therapeutic alliance (ρ=.13; p≤.05) and hospice enrollment (z=-2.09; ≤;.05), and negatively associated with bereaved caregiver regret (ρ=-.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z=-2.06; p≤.05). Scores did not vary by caregiver characteristics other than religious affiliation, with Catholics scoring lower than non-Catholics, and those without religious affiliation scoring lower than those with an affiliation. Models predicting CEQUEL scores were compared using multiple regression analysis and AICc values. In unadjusted analyses, dying in a hospital, inpatient hospice length of stay (LOS) < 1 week, patients feeling seen as a whole person by their physician, and caregiver religiosity predicted CEQUEL scores. Only dying in a hospital (B=-1.65, SE=0.42, p=0.000) and inpatient hospice LOS < 1 week (B=-1.87, SE=-.69, p=0.008) remained significant in adjusted analysis. These findings suggest that CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. This study also identifies key factors that can be modified to improve caregiver evaluation of quality of care and associated bereavement outcomes. CEQUEL is the first scale of its kind to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment. Implications for research, clinical practice and policy are discussed. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

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.

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 (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.