Good communication between doctors, patients and caregivers is key, especially when it comes to the complex concerns surrounding end-of-life care preferences.

“Ideally, health care harmonizes with social, psychological, and spiritual support as the end of life approaches,” write the authors of a recent Institute of Medicine (IOM) report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” The 505-page document examines various ways to improve end-of-life care in the United States. They continue, “To this end, care near the end of life should be person-centered, family-oriented and evidence-based.”

How to achieve a harmonious balance between person-focused care and clinically effective treatment endeavors during the last weeks, days and hours of an individual’s life is a major issue; in the U.S., as well as in other countries with increasing populations of aging adults.

For instance, new research from Ontario-based McMaster University found that Canadian families, patients and physicians often disagree on what these all-important end-of-life dialogues should include. “Patients and their families have identified communication with health care providers and decision-making about goals of care as high priorities for improving end-of-life care in Canada,” write study authors, echoing the sentiments of many of their American counterparts.

Something(s) to Talk About

But even when these conversations do take place, are doctors and patients really talking about the important issues?

To find out, researchers compiled a list of the most commonly-suggested end-of-life conversation topics for physicians (gathered via an analysis of scientific literature and by questioning a focus group of elder care experts).

Commonly-suggested end-of-life conversation topics for physicians:

  • The patient’s prognosis
  • The goals of care
  • The patient’s values concerning health care
  • The patient’s prior experience with talks about life-sustaining treatment
  • What the benefits, risks and possible outcomes of life-sustaining treatment would be
  • What the benefits, risks and possible outcomes of comfort care would be
  • The patient’s fears and concerns
  • The patient’s care preferences in the event of life-threatening illness
  • Legal documents to record patient care preferences

McMaster scientists then solicited the opinions of hundreds of patients in their mid-fifties and older who had a high risk of dying within six months, and their families.

5 crucial topics to discuss:

  • The patient’s care preferences in the event of life-threatening illness
  • The patient’s values concerning health care
  • The patient’s prognosis
  • The patient’s fears and concerns
  • The goals of care

Surprisingly, despite the stated importance of these issues, some of these topics were barely touched on by doctors. For instance, only 10 percent of the patients had had a candid conversation about their prognosis with their doctor.

Tips for Talking About Death

End-of-life care discussions can be emotionally draining, regardless of whether the conversation occurs among family members, or between patients and their doctors. But the prevailing words of wisdom on the matter, from long-time family caregivers and health care providers alike, are to have these talks sooner rather than later.

For family members of older adults, this often means pushing beyond the discomfort of contemplating a loved one’s inevitable demise.

“Sex and death. It’s odd that those two topics should bring so much anxiety to parents and children,” writes longtime caregiver Carol Bradley Bursack in an article about conversations about end-of-life issues. “It isn’t always the elders who shy away from the end-of-life talks. Some do, of course, but many would like to discuss the arrangements they’ve made…however the adult children often find excuses to put off that particular ‘talk.’”

But research has shown that people who can get beyond the difficulty of confronting the reality of death and make plans for their future feel less anxious and more in control of their care than those who avoid the topic.