Doctors don't ask about end-of-life plans, study finds

Many patients' charts don't reflect their final wishes, Canadian researchers say.

02 april 2013—There is a lack of communication between doctors and their elderly patients about end-of-life plans, a new Canadian study reveals.

Medical charts documented such plans for only about 30 percent of those who had them, the investigators found.

"These sick, elderly patients on acute care hospital wards have thought about the kind of treatments that they would, or would not, want in the final days, have discussed it with family, and can clearly articulate a preference," said lead researcher Dr. Daren Heyland, scientific director of the Clinical Evaluation Research Unit at Kingston General Hospital in Ontario.

Yet, there has been little meaningful conversation with any member of the health care team, and inadequate documentation as well, Heyland added.

"As a consequence, the elicited preferences of treatments at the end of life only agreed with the order in the medical chart 30 percent of the time. The majority of the disagreement was that patients were saying 'keep me comfortable' and the medical record was saying they were 'for full resuscitation,'" he said.

This lack of engagement of health care professionals in having end-of-life conversations with their patients is not just a problem in Canada, but also in the United States, an expert said.

"I wish I could tell you I was surprised," said Dr. R. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine and director of the National Palliative Care Research Center.

"This has been a recurring problem in health care for many years," Morrison added.

The report was published April 1 in the online edition of JAMA Internal Medicine.

What the difference between the medical record and the expressed preferences of the family means is a crucial one, Heyland said.

"Patients will likely undergo intensification of care at the end of life," he said. "These unwanted aggressive treatments will lead to worse quality of life in the final days, worse quality of death and, of course, waste our finite health care resources."

To find out how well patients' wishes were communicated, Heyland's team had 278 patients at risk of dying within six months and 225 family members complete questionnaires about end-of-life care decisions.

Among these patients, more than 76 percent had thought about their end-of-life care. Of these, nearly 12 percent wanted life-prolonging care, 48 percent had an advance care plan and 73 percent had named a person who could make decisions about their health care, the researchers found.

For patients who made plans with their health care providers, 30 percent had consulted their family doctor, while 55 percent had expressed their wishes to a member of the health care team.

Yet those wishes, or family-made decisions, only showed up on 30 percent of the patients' medical records, the researchers found.

According to Morrison, there are three key reasons why doctors and patients don't communicate about end-of-life care. First, doctors aren't trained in how to talk to patients about end-of-life care. Second, it's not a routine part of care. And third, in some cases, he said, doctors would rather do procedures than have conversations.

To overcome this problem, patients should talk to their doctor and doctors should ask their patients, Heyland said.

"We have started a 'Speak Up' campaign directed to the public and a 'Just Ask' campaign directed to health care professionals," he noted.

Morrison thinks it's the doctors' responsibility to discuss end-of-life care, not the patients' responsibility.

"Patients should feel comfortable raising this, but I think that's a terrible onus to put on patients and families," he said. "It should be your physician who raises it with you. You shouldn't be in the position of having to [say], 'Let me tell you about what I want.' It should be the doctor asking what the patient wants."

More information: For more information on end-of-life care, visit the U.S. National Library of Medicine.