Date of Award

1-1-2021

Document Type

Open Access Thesis

Degree Name

Medical Doctor (MD)

Department

Medicine

First Advisor

Terri R. Fried

Abstract

As physicians, we aim to support our patients to engage in and make end-of-life medical decisions. Ideally, patients engage in advance care planning (ACP) to direct their care if they become incapable of participating in decision-making. For many patients, however, their first encounter with end-of-life care—e.g. code status—occurs at hospital admission. This thesis describes two studies: the ACP Study and Code Status Study. The ACP Study examines ACP knowledge and its relationship to engagement. This study utilizes baseline data from 921 participants age 55 years enrolled in the STAMP randomized controlled trial, including a knowledge scale consisting of 7 questions regarding the purpose and mechanisms of ACP and measures of participation. Adequate knowledge (4 correct) was associated with communicating with a loved one about quality versus quantity of life (OR 1.7, 95% CI: 1.2, 2.4) and living will completion (OR 1.6, 95% CI: 1.0, 2.5), but not healthcare agent assignment. Factors including race and education remained associated with engagement after accounting for knowledge. This study asserts that this knowledge gap places patients already facing healthcare disparities at further disadvantage and that while education is important, it is likely insufficient in and of itself to increase engagement. The Code Status Study explored with older hospitalized patients their understanding of cardiopulmonary resuscitation (CPR) outcomes and health outcome priorities as they relate to CPR preference, and their perspectives on the role of prognostic information. 33 patients age 65 years were administered an in-person survey(including measures of CPR preferences, estimates of CPR outcomes, beliefs about the impact of prognostic information on decision-making, and health outcome priorities. A majority (62%) of participants preferring full code status prioritized living as long as possible, compared to only 33.3% and 0% of those who preferred full code with subsequent limitations and DNR (P = 0.035). While the mean estimate of survival was 53.8%, with full code participants more likely to overestimate the probability of survival (P = 0.013), the provision of prognostic information would not change their preferences. Together, these studies demonstrate a complicated role of knowledge in end-of-life decision-making.

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