End-of-Life Wishes: Lack of Communication Persists

Steven Fox

April 01, 2013

Although many elderly patients and their families discuss advance care planning (ACP) with their physicians, those wishes often fail to be added to patients' medical records, according to findings from a study carried out in Canada and published online April 1 in JAMA Internal Medicine.

"To our knowledge, there has been no rigorous audit or evaluation of ACP from the patient or family perspective using validated questionnaires that assess the frequency of engagement in key ACP activities," write Daren K. Heyland, MD, FRCPC, from the Clinical Evaluation Research Unit, Department of Medicine, Kingston General Hospital, Ontario, Canada, and colleagues.

Aiming to fill that gap in knowledge, these researchers administered in-person questionnaires to 278 elderly patients who were deemed at high risk of dying during the subsequent 6 months. They also surveyed 225 family members associated with the patients. The patients were treated at 12 acute care facilities in Canada between September 2011 and March 2012. Their mean age was 80 years; family members were about 61 years of age.

Responses to the questionnaires showed that before hospitalization, more than three quarters of the patients (76.3%) had given thought to end-of-life (EOL) care. Only 11.9% expressed a preference for life-prolonging care.

Of the patients, 47.9% had completed advance care plans, and 73.3% had formally designated a surrogate individual to make decisions regarding their care.

Even so, of the patients who had talked about their wishes with their families, less than a third (30.3%) had related those wishes to their family physician. Only a bit more than half (55.3%) had discussed their preferences with any member of their healthcare team.

Of particular note, in only 30.2% of cases were patient/family wishes for EOL care documented in medical records.

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

In an invited commentary that accompanies the article, Theresa A. Allison, MD, PhD, and Rebecca L. Sudore, MD, both from the Division of Geriatrics, Department of Medicine, San Francisco Veterans Affairs Medical Center, underscore the importance of communication between patients, their families, and medical providers.

"Discussions about goals of care and code status constitute a medical procedure every bit as important to patient safety as a central line placement or a surgical procedure," they write. "Much as we have developed systems to improve patient safety in surgical procedures, we need to develop systematic approaches to discussing patient values and goals of care."

This study was supported by funding from the Canadian Institutes of Health Research, the Michael Smith Health Services Research Foundation in British Columbia, Alberta Innovates, and the Alternate Funding Plan Innovation Fund in Ontario. The study authors and editorialists have disclosed no relevant financial relationships.

JAMA Intern Med. Published online April 1, 2013.