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Original Investigation | Health Care Reform

Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning

Daren K. Heyland, MD, MSc, FRCPC; Doris Barwich, MD, CCFP; Deb Pichora, RN, MSc; Peter Dodek, MD, MHSc; Francois Lamontagne, MD, MSc, FRCPC; John J. You, MD, MSc; Carolyn Tayler, RN, BN, MSA, CON(C); Pat Porterfield, RN, MScN; Tasnim Sinuff, MD, PhD, FRCPC; Jessica Simon, MB, ChB, FRCPC; for the ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team and the Canadian Researchers at the End of Life Network (CARENET)
JAMA Intern Med. 2013;173(9):778-787. doi:10.1001/jamainternmed.2013.180.
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Importance Advance care planning can improve patient-centered care and potentially reduce intensification of care at the end of life.

Objectives To inquire about patients' advance care planning activities before hospitalization and preferences for care from the perspectives of patients and family members, as well as to measure real-time concordance between expressed preferences for care and documentation of those preferences in the medical record.

Design Prospective study.

Setting Twelve acute care hospitals in Canada.

Participants Elderly patients who were at high risk of dying in the next 6 months and their family members.

Main Outcome Measures Responses to an in-person administered questionnaire and concordance of expressed preferences and orders of care documented in the medical record.

Results Of 513 patients and 366 family members approached, 278 patients (54.2%) and 225 family members (61.5%) consented to participate. The mean ages of patients and family members were 80.0 and 60.8 years, respectively. Before hospitalization, most patients (76.3%) had thought about end-of-life (EOL) care, and only 11.9% preferred life-prolonging care; 47.9% of patients had completed an advance care plan, and 73.3% had formally named a surrogate decision maker for health care. Of patients who had discussed their wishes, only 30.3% had done so with the family physician and 55.3% with any member of the health care team. Agreement between patients' expressed preferences for EOL care and documentation in the medical record was 30.2%. Family members' perspectives were similar to those of patients.

Conclusions and Relevance Many elderly patients at high risk of dying and their family members have expressed preferences for medical treatments at the EOL. However, communication with health care professionals and documentation of these preferences remains inadequate. Efforts to reduce this significant medical error of omission are warranted.

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Figures

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Figure 1. Flow diagram of patients and families involved in this study.

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Figure 2. Relationship between expressed preferences for use (or nonuse) of life-sustaining treatments and documented goals of care in the medical record. A, Patients' preferences for care and documented goals of care. Two patients with missing preference data and 77 with missing documentation were excluded; 199 of 278 enrolled patients (71.6%) were included in the analysis. The preferences were described and categorized as follows: (1) aggressive use of heroic measures and artificial life-sustaining treatments, including CPR (cardiopulmonary resuscitation), to keep me alive at all costs; (2) full medical care, but in the event my heart or breathing stops, no CPR; (3) physicians will be focused on my comfort by alleviating suffering and not on keeping me alive by artificial means or heroic measures, such as trying to prolong my life with CPR and other life-sustaining technologies; (4) a mix of the above options (eg, try to fix problems, but if I am not getting better, switch to focusing only on my comfort, even if it hastens death); (5) unsure; and (6) other. B , Family members' preferences for patient care and documented goals of care, with categories as listed for panel A. One family member with missing data and 71 with missing documentation were excluded; 153 of 225 enrolled family members (68.0%) were included in this analysis.

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