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Original Investigation |

Stability of End-of-Life Preferences:  A Systematic Review of the Evidence

Catherine L. Auriemma, MD1,2; Christina A. Nguyen2,3,4; Rachel Bronheim4,5; Saida Kent, BS2; Shrivatsa Nadiger, MD6; Dustin Pardo, MD7; Scott D. Halpern, MD, PhD2,4,8,9,10
[+] Author Affiliations
1University of Pennsylvania Perelman School of Medicine, Philadelphia
2Fostering Improvement in End-of-Life Decision Science (FIELDS) Program, University of Pennsylvania, Philadelphia
3Harvard College, Harvard University, Cambridge, Massachusetts
4Leonard Davis Institute of Health Economics, University of Pennsylvania Perelman School of Medicine, Philadelphia
5Woodrow Wilson School of Public and International Affairs, Princeton University, Princeton, New Jersey
6Department of Medicine, Presbyterian Hospital, Philadelphia, Pennsylvania
7Department of Medicine, Einstein/Montefiore Medical Center, New York, New York
8Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia
9Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Perelman School of Medicine, Philadelphia
10Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania
JAMA Intern Med. 2014;174(7):1085-1092. doi:10.1001/jamainternmed.2014.1183.
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Importance  Policies and practices that promote advance care planning and advance directive completion implicitly assume that patients’ choices for end-of-life (EOL) care are stable over time, even with changes in health status.

Objective  To systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status.

Evidence Review  We searched for longitudinal studies of patients’ preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded.

Findings  A total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 70% of patients’ preferences for EOL care were stable over time. Preference stability was generally greater among inpatients and seriously ill outpatients than among older adults without serious illnesses (P < .002). Patients with higher education and who had engaged in advance care planning had greater preference stability, and preferences to forgo therapies were generally more stable than preferences to receive therapies. Among 9 of the 24 studies (38%) assessing changes in health status, no consistent relationship with preference changes was identified.

Conclusions and Relevance  Considerable variability among studies in the methods of preference assessment, the time between assessments, and the definitions of stability preclude meta-analytic estimates of the stability of patients’ preferences and the factors influencing these preferences. Although more seriously ill patients and those who engage in advance care planning most commonly have stable preferences for future treatments, further research in real-world settings is needed to confirm the utility of advance care plans for future decision making.

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Figure 1.
Flow of Studies Through the Review Process

The flow of studies through the identification, screening, eligibility, and inclusion process modeled after the PRISMA flow diagram.aThe remaining 31 studies did not contain sufficient data to extract or calculate the percentage of individuals with stable preferences for specific treatments or the percentage of total stable preferences over time.

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Figure 2.
Percentage of Patients With Stable Preferences by Severity of Illness

Studies were grouped into 3 categories based on the severity of illness of the source population: inpatients, outpatients, and older adults. Bubble size reflects the sample size of the study. Bubble color represents the source population. The diamonds represent a summary measure for each of the 3 groups. (The remaining 31 studies did not contain sufficient data to extract or calculate the percentage of individuals with stable preferences for specific treatment or the percentage of total stable preferences over time.)

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