Publication Date

2019-04-30

Availability

Embargoed

Embargo Period

2021-04-29

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PHD)

Department

Nursing (Nursing)

Date of Defense

2019-03-25

First Committee Member

Victoria Behar Mitrani

Second Committee Member

Joseph P. De Santis

Third Committee Member

Brian E. McCabe

Fourth Committee Member

Harleah Buck

Abstract

Cancer is the second leading cause of death in the United States, accounting for nearly a quarter of all deaths annually. Cancer patients and their caregivers do not adequately prepare for the end-of-life, creating the conditions for poorer quality deaths. To address this lack of preparation, this dissertation aimed to unpack the meaning and impact of the components of preparation for the end-of-life among cancer patients. Three independent studies were conducted to achieve this aim: 1) a concept analysis to clarify the meaning of end-of-life decision making in the context of chronic life-limiting disease, distinguishing it from preparation for the end-of-life, 2) a quantitative analysis of data from the Health and Retirement Study, which utilized structural equation modeling to examine the impact of classes of advance care planning (ACP) completion on the quality of death among cancer patients, and 3) a systematic review of ACP interventions to identify ways to enhance ACP engagement among cancer patients. Findings from the concept analysis led to a refined definition and conceptual model of end-of-life decision making in the context of life-limiting disease, where decision making is preceded by distinct preparatory factors and followed by distinct outcomes (i.e., quality of death, quality of caregiver bereavement). While ACP was a possible preparatory factor in the model, the model also demonstrated that there were other unique features of preparation, which cannot be reduced to ACP alone. The model highlights that the main power health care providers have to influence end-of-life decisions and their associated outcomes is during this preparatory phase. The secondary data analysis revealed that when compared to non-engagement in ACP, all classes of ACP completion were found to positively impact the quality of death among cancer patients. Yet, more full engagement in ACP was found to have greater effects on the quality of death than partial engagement. Potential enhanced approaches to ACP that were identified in the systematic review which may address this partial and non-engagement included utilizing an interdisciplinary group of health care providers to implement ACP, formally involving the caregiver in the process of ACP, and addressing ACP over multiple clinical interactions staged over time. This dissertation draws the attention of researchers and health care providers to the larger context of preparation for the end-of-life as a crucial mechanism that can be harnessed to improve end-of-life care. To do so, will require the development of a measure for preparation for the end-of-life that accounts for health care provider as well as caregiver engagement in this process. This will help to achieve a richer understanding of the quantity and dose of preparation needed to optimize outcomes at the end-of-life. Nurses are well positioned to advance the science related to preparation for the end-of-life through research and translation of evidence into practice. Such efforts stand to significantly improve the end-of-life experience for both cancer patients and their caregivers.

Keywords

advance care planning; end-of-life decision making; quality of death; cancer; behavior change

Available for download on Thursday, April 29, 2021

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