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Despite the well-established evidence about catastrophic complications in individuals living with durable mechanical circulatory support, little is known about the decision-making processes in advance care planning for this population. While findings from current studies give insights into clinicians’ attitudes and protocol development to integrate palliative care specialists in advance care planning, these results do not describe the patients’ experiences in managing the uncertain outcomes of living with durable mechanical circulatory support. Therefore, this dissertation research explored the personal experiences of individuals living with mechanical circulatory support to analyze how their complex disease trajectories impact decision-making about advance care planning. Constructivist grounded theory guided all aspects for this dissertation. In-depth interviews, using a semi-structured guide to navigate the conversations, were conducted with 24 individuals who were implanted with durable mechanical circulatory support devices. Systematic analysis of the interview transcripts led to the identification of emergent categories and the development of the Theory of Pivoting Uncertainties, a situation-specific theory. The first paper, a systematic literature review, points to the dearth of ongoing ACP communication and the potential for nurses to provide primary palliative care for the MCS population. Consistent with the findings from the literature review, the paucity of ACP communication continued to be evident within the sample of participants. In the first data-based paper, participants’ perceptions of opportunities for ongoing advance care planning conversations were elucidated in four categories: 1) identifying the optimal context and timing for advance care planning; 2) sharing information with key stakeholders; 3) examining their understanding of advance care planning, and 4) assessing satisfaction with the information that had been received. These four categories were interrelated and occurred simultaneously to present ongoing opportunities for advance care planning across the mechanical circulatory support trajectory. In the second data-based paper on the Theory of Pivoting Uncertainties describes the process of decision-making about advance care planning in the context of living with mechanical circulatory support. Within the core category of complexities in decision-making about advance care planning, there were three dynamic subcategories: 1) impediments; 2) uncertainties; and 3) promoters. Collectively, the subcategories in the Theory of Pivoting Uncertainties gave insight into participants’ patterned responses towards these uncertainties and ultimately decision-making around ACP. These insights into the experiences of the complicated disease trajectories among individuals with mechanical circulatory support evidence their growing awareness of the uncertainties of living. The awareness of uncertain outcomes holds the potential for clinicians to engage individuals in sensitive advance care planning conversations. Additionally, the current sample highlight the need for clinicians, including MCS-trained clinical nurses and MCS coordinators, to initiate ongoing conversations with mechanical circulatory support individuals and their families. By exploring the firsthand experiences of individuals living with mechanic circulatory support, these findings are useful for informing clinical practice, future research, and policy-making around advance care planning.

This dissertation compiles three papers that focus on challenges in research on and practice of palliative care. The first chapter reports on a survey of 61 leading academic researchers in palliative care, who were asked their opinions on research priorities and barriers to better research in the field. Qualitative methods were used to extract the seven leading research recommendations and four barriers to better research generated by the purposively interdisciplinary group. The next two chapters use the Wisconsin Longitudinal Study to test hypotheses about the correlates and triggers of advance care planning (ACP) in older adults, cross-sectionally and, for non-planners, at a follow-up seven years later. The results presented in Chapter 2 identify several dimensions of health that are associated with formal and informal ACP cross-sectionally. Over time, changes in health have little affect on the likelihood of a non-planner completing ACP by Time 2, seven years later. In Chapter 3, I applied theory of social diffusion to ACP, hypothesizing that the planning status of a spouse or sibling would increase a non-planner's likelihood of doing planning by Time 2. The cross-sectional analysis found strong associations between spouse only and spouse and sibling status on formal and informal ACP of the focal individual, respectively. Over time, however, having a spouse or sibling with formal (but not informal) ACP affected the focal individual's likelihood of going on to do planning, but having both a spouse and sibling with formal ACP at Time 1 had an attenuating effect on the focal individual's likelihood of planning. In the final chapter I draw connections between the three research activities and suggest directions for future research. Most pressing is the need for evaluation of existing education programs to support older adults as they complete ACP and the development of novel programs targeting individuals who are least likely to engage in ACP. The growing body of academic research on factors that facilitate ACP should be translated into more effective supports for conversations about end-of-life health care.