Catherine L Auriemma1, Christina A Nguyen2, Rachel Bronheim3, Saida Kent4, Shrivatsa Nadiger5, Dustin Pardo6, Scott D Halpern7. 1. University of Pennsylvania Perelman School of Medicine, Philadelphia2Fostering Improvement in End-of-Life Decision Science (FIELDS) Program, University of Pennsylvania, Philadelphia. 2. Fostering Improvement in End-of-Life Decision Science (FIELDS) Program, University of Pennsylvania, Philadelphia3Harvard College, Harvard University, Cambridge, Massachusetts4Leonard Davis Institute of Health Economics, University of Pennsylvania Perelman. 3. Leonard Davis Institute of Health Economics, University of Pennsylvania Perelman School of Medicine, Philadelphia5Woodrow Wilson School of Public and International Affairs, Princeton University, Princeton, New Jersey. 4. Fostering Improvement in End-of-Life Decision Science (FIELDS) Program, University of Pennsylvania, Philadelphia. 5. Department of Medicine, Presbyterian Hospital, Philadelphia, Pennsylvania. 6. Department of Medicine, Einstein/Montefiore Medical Center, New York, New York. 7. Fostering Improvement in End-of-Life Decision Science (FIELDS) Program, University of Pennsylvania, Philadelphia4Leonard Davis Institute of Health Economics, University of Pennsylvania Perelman School of Medicine, Philadelphia8Division of Pulmonary, Aller.
Abstract
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.
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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