Indiana University-Purdue University Indianapolis (IUPUI) / Heart failure is a terminal disease with an unpredictable trajectory. Family members of patients with heart failure are often called upon to make decisions about treatment and end of life care, sometimes with little guidance as to the patients’ wishes. Advance care planning (ACP) is an ongoing process by which patients make decisions about their future healthcare. Only about one-third of patients with heart failure have participated in ACP, which is a similar percentage to the overall population. Despite increased focus on ACP and interventions to improve it, the rates of ACP in the population remain relatively unchanged. There is a need to develop interventions that are targeted based on patient engagement in the process rather than the existing broad-based interventions. The purpose of this dissertation study is to examine the relationship between the American Heart Association stage of heart failure and readiness to engage in advance care planning. The study consisted of mailed surveys that consisted of demographic questionnaires and the Advance Care Planning Engagement Survey. Engagement was analyzed in relation to heart failure stage, heart failure class, comorbidities, perception of health status, recent hospitalizations, making healthcare decisions for others, and demographic variables. The results demonstrated that although there was no significant association between heart failure stage or class and engagement in advance care planning, there were significant associations between medical comorbidities and advance care planning engagement. Other significantly associated participant characteristics included age, gender, education, ethnicity, and income. Findings suggest that people with multiple comorbid conditions will be more likely to be ready to engage in ACP than those with fewer health conditions. The results from this study will contribute to the development of strategies to improve advance care planning that are targeted based on engagement level.

Choosing a surrogate to make medical decisions for a patient is an emotionally challenging task. In hospital settings, it is estimated over 86% of life saving medical decisions have been made by a surrogate (Swigart, Lidz, Butterworth, & Arnold, 1996). For the marginalized populations of lesbian, gay men, bisexual, and transgender persons (LGBT), decisions are especially difficult, compounded by issues of discrimination, lack of legal support, level of relationship commitment,, and complicated disclosure to family and medical professionals (Riggle, Rostosky, Prather, & Hamrin, 2005). Limited research has been presented regarding environmental and social factors that impact the choice of a surrogate decision-maker for a LGBT individual. This in-depth literature review will examine factors influencing individual surrogate choice, identify obstacles and gaps in the literature findings, and explore services required by the LBGT population.

Thesis (M.S.)--University of North Dakota, 2005. / Includes bibliographical references (leaves 67-74) Also available online.

Thesis (Ph. D.)--University of Washington, 2001. / Vita. Includes bibliographical references (leaves 212-216).

Professional paper (M Nursing)--Montana State University--Bozeman, 2009. / Typescript. Chairperson, Graduate Committee: Elizabeth S. Kinion. Includes bibliographical references (leaves 28-34).

Thesis (M.A.)--Catholic Theological Union at Chicago, 1998. / Vita. Includes bibliographical references (leaves 117-124).

Thesis (Ph. D.)--University of Rhode Island, 2004. / Typescript. Includes bibliographical references (leaves 171-187).

Background: - Living wills have long been associated with end-of- life care. This study explored the promotion and use of living wills amongst general practitioners and frail care nursing coordinators directly involved in the care of the elderly in Howick, Kwa-Zulu Natal. The study also explored their views regarding the proforma living will disseminated by the Living Will Society. Participants: - Seven general practitioners and three frail care nursing coordinators, making ten in total. Design: - Qualitative in-depth interviews and analysis, using the Framework method. Results:- Both doctors and nursing staff understood the concept of living wills and acknowledged their varied benefits to patient, family and staff. They were concerned about the lack of legal status. They felt that the proforma document from the Living Will Society was simple and clear. Despite identifying the low level of use of living wills, they felt that third party organisations and individuals should promote living wills Conclusion: - GPs and frail care nurse coordinators were knowledgeable of living wills in general and the Living Will Society proforma document in particular. They valued the contribution that living wills can make in the care of the elderly, benefitting patients, their families, health care workers and even the health system. They also valued the proforma living will document from the Living Will Society for its clarity and simplicity. However, both GPs and frail care nursing coordinators viewed the living will process as patient- driven and their main role was as custodians and not advocates of the living will.

An advance directive is an instruction made by a competent person about his or her preferred health care choices, should the person become incapable to make treatment decisions. Legal recognition of advance directives has developed over the last half century in response to medical advances that can prolong the life of a patient who is no longer sentient, and who has decided to forego some or all treatment under such circumstances. Two types of directive have emerged in the law: an instructional directive, in which a person sets out treatment choices, and a proxy directive, which enables the person to appoint a proxy to make treatment decisions. Development of the law has been impeded by fear that advance directives diminish regard for the sanctity of life and potentially authorize euthanasia or assisted suicide. In Canada, this fear explains the continued existence of outdated criminal law prohibitions and contributes to provincial advance directive legislation that is disharmonized and restrictive, in some provinces limiting personal choice about the type of advance directive that can be made. The British Columbia Representation Agreement Act (RAA)1 is an example of such restrictive legislation. The RAA imposes onerous execution requirements, is unduly complex and restricts choice of planning instrument. Respect for patient autonomy requires that health care providers honour patients' prospective treatment preferences. Capable persons must have ready access to a choice of health care planning instruments which can be easily executed. B.C. should implement advance directive legislation that meets the needs and respects the autonomy of B.C. citizens. The Criminal Code must be amended to eliminate physicians' concern about potential criminal liability for following an advance directive. Advance directive legislation across Canada should be harmonized. Finally, health care providers should receive training on effective ways to communicate with patients about end-of-life treatment decisions to ensure that patients' health care choices are known and respected. / Law, Peter A. Allard School of / Graduate

published_or_final_version / Community Medicine / Master / Master of Public Health