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Original Investigation
Health Care Reform
May 13, 2013

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

Author Affiliations

Author Affiliations: Clinical Evaluation Research Unit, Department of Medicine, Kingston General Hospital (Dr Heyland and Ms Pichora), and Department of Community Health and Epidemiology, Queen's University, Kingston, Ontario (Dr Heyland); Division of Palliative Care, Department of Family Practice, and Vancouver Coastal Health and School of Nursing, University of British Columbia, Vancouver (Ms Porterfield); Fraser Health Authority, Surrey, British Columbia (Dr Barwich and Ms Tayler); Center for Health Evaluation and Outcome Sciences and Division of Critical Care Medicine, St Paul's Hospital and University of British Columbia, Vancouver (Dr Dodek); Centre de Recherche Clinique Étienne-Le Bel, Université de Sherbrooke, Sherbrooke, Québec (Dr Lamontagne); Departments of Medicine and Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario (Dr You); Department of Critical Care Medicine, Sunnybrook Hospital and Sunnybrook Research Institute, and Interdepartmental Division of Critical Care Medicine, Department of Medicine, University of Toronto, Toronto, Ontario (Dr Sinuff); and Division of Palliative Medicine, Departments of Oncology and Internal Medicine, University of Calgary, Alberta (Dr Simon).

Group Information: A list of the ACCEPT Study Team is provided at the end of this article, and that of the CARENET investigators appears at www.thecarenet.ca.

JAMA Intern Med. 2013;173(9):778-787. doi:10.1001/jamainternmed.2013.180
Abstract

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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