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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.

As technology advances, health care decisions have become increasingly complex. American hospitals, based on accreditation standards, are required to have a system and process to address ethics, patient rights, and responsibilities. These practices vary widely, and there is very little consistency and few standards across the country. Key court cases have provided minor structure, and the federal government has been silent in the formulation of these structures but not necessarily in this arena. Most often, these accreditation standards related to clinical ethics are managed by Healthcare Ethics Committees (HEC). Bioethics has become a growing field, the level of integration between this discipline and healthcare practice varies widely. Using qualitative methods based on Grounded Theory, this analysis presents six key thematic findings, as well as interpretations to identify current challenges and opportunities to make recommendations for improvement by enhancing clarity and reducing ambiguity.

Blood and marrow transplantation (BMT) has become an increasingly acceptable treatment for children with life threatening malignant diseases. Survival rates for transplant recipients vary from 23% to 63%. Children with complications from BMT, typically die in the hospital after a prolonged stay. The parental decision to allow a child to die a natural death is typically made in an aura of emotional duress and bewilderment at the complexity and volume of new information that must be assimilated.The purpose of this study was to describe the process of parental decision making for Do Not Resuscitate (DNR) or to withdraw life support in pediatric BMT.The framework for this study was developed from the author's epistemology that blends neo-modernism (recognition of individual uniqueness yet acknowledgment that certain underlying universal principals exist) with the idea that the nature of all things may be viewed as an ongoing, self-constructing process.Grounded theory methodology was used. The sample (determined through theoretical sampling) consisted of seven parents of children who died following BMT and for whom the parent made an end-of-life decision. Data was analyzed using constant comparative analysis, a method that combines both substantive and theoretical coding of data with a qualitative style of theory development.The realization of parental knowing was the process that parents used to navigate the human problem of having to make the end-of-life decision for their children who were dying following blood and marrow transplantation. This process consisted of four categories: Developing Trust, Committed to Seeing It Through, Facing My Worst Fear, and Acceptance of Self.The knowledge gained from this study will inform nurses who care for children who are dying following pediatric BMT. Strategies may be developed that will assist nurses to support the development of parental trust, to help sustain the commitment of parents as they move through the BMT treatment journey, and to assist parents as they face their worst fear. As a result, parents should be better able to achieve an acceptance for themselves that will facilitate a more satisfying experience of the ever changing process occurring in their own lives.

Criminal aspects of advanced directives and Do Not Resuscitate orders Abstract The aim of this thesis was to analyse current legal regulation of advanced directives and Do Not Resuscitate orders, particularly of their criminal aspects. These legal concepts are relatively new in the Czech law, therefore there are still many questions about them and Czech law unfortunately does not offer definite answers. In the first chapters I focused on general criminal aspects of provision of health services. I analysed conditions of criminal liability in connection with health services, with emphasis on the principle of subsidiarity of criminal prosecution. In this part I also addressed the issue of mercy killing, by another name euthanasia and its differentiation from other types of end-of-life decision making. In the second chapter, I approached the matter of criminal liability of providers of health care services, as legal persons, which became after the last amendments in this area significant also for health care. The following chapters were dedicated to advanced directives. At first, I analysed this legal concept in the matter of civil law, which is essential for its comprehensive interpretation. I tried to identify the main ambiguities of the legal regulation, whether regarding new regulation of substitute...

This is a cross-national qualitative study with the purpose of obtaining perspectives held by people with quadriplegia and leading figures in disability movements in the Netherlands and Australia on the issues of euthanasia and physician-assisted suicide (EPAS). A disability voice is not prominent in public debate on EPAS in Australia or the Netherlands, even though people with disabilities are often thought to be vulnerable in relation to EPAS policies. Disability perspectives are potentially valuable in illuminating issues in relation to euthanasia and physician-assisted suicide, because issues of dependence, independence, and individual autonomy play important roles in relation to both EPAS and to living with disability. The study's methodology uses a phenomenological approach and incorporates aspects of heuristics and grounded theory. Its conceptual framework incorporates MacIntyre's (1999) theory of acknowledged dependency and vulnerability; Habermas' (1989) theory of knowledge; and Festinger's (1959) theory of cognitive dissonance. The main sample of twenty people with quadriplegia (the grassroots sample) was interviewed in the Netherlands and in Australia.