Heart Failure Patients Need To "Take Control" Over End-Of-Life Decisions

August 17, 1998

DALLAS, Aug. 18 -- A new study finds that about one in four doctors of patients with advanced congestive heart failure misjudge their patients' wishes about being resuscitated should they go into cardiac arrest.

The study in today's Circulation: Journal of the American Heart Association also says that some patients may change their minds about whether they want their doctors to "pull the plug." Unlike people with terminal cancer whose condition steadily declines, individuals with severe congestive heart failure may have episodes of feeling relatively well between times when they feel as if they're at death's door, according to Harlan N. Krumholz, M.D., lead author of the study and associate professor at Yale School of Medicine.

"There were times for some patients in the hospital when they felt like they didn't want to go on, that if their heart stopped this was the time their life should end," says Krumholtz. "Then there were times after being discharged when they were feeling better and felt that if their heart stopped their condition was fair enough that they would want to be revived.

"It is a particularly challenging aspect of heart failure that the condition fluctuates. People's feelings can change, and their preferences about resuscitation can change."

Researchers found that many patients changed their minds about being resuscitated. Among 600 patients questioned two months after their initial response, 19 percent had different viewpoints.

In the study's survey of do-not-resuscitate (DNR) preferences among 936 individuals hospitalized for severe heart failure, nearly one-quarter said they did not wish to receive artificial respiration. However, physicians misjudged their patients' preferences for 24 percent of the individuals.

"The patients need to be their own best advocates," says Krumholz. "They need to understand that it is ultimately their responsibility to take control over the end of their lives."

Krumholz and his colleagues at the Yale School of Medicine and the Yale-New Haven Center for Outcomes Research and Evaluation found that although 25 percent of patients said they had discussed the issue with their doctor, agreement between patient and physician was still lacking.

"Physicians seemed to think that many patients wanted what they would prefer themselves. That approach does not always work," says Krumholz. "There is a need to improve patient-doctor communication about the topic, even though it is often difficult to discuss."

Patients who asked not to be resuscitated tended to be older, have a higher income and thought they were sicker and less able to function than those who did not request DNR, according to researchers.

In an accompanying editorial, Lynne Warner Stevenson, M.D., director of the Heart Failure/Cardiomyopathy Program at Brigham and Women's Hospital in Boston, questioned whether decisions about life and death have deeper implications than can be summarized in surveys.

"We must tread gently upon these grounds and recognize that resuscitation may represent a 'rite' as well as a 'right' for many patients and their families," she says.

"During the stress of hospital admission, patients can respond with fear to questions about resuscitation as hints that death is imminent," says Stevenson. Only half the patients in this study who had not discussed their preferences with their doctor ever wanted to talk about it in the first place, she notes.

It may be difficult to improve upon the rate of agreement between physicians and patients regarding DNR preference, according to Stevenson. "Do we want to honor the first decision of the significant percentage of patients who originally request no resuscitation, but later change their mind when they are feeling better?" she asks.

"Physicians also worry that DNR orders are often translated as 'Do-Not-Treat'," cautions Stevenson. Use of more specific limits, like "do not intubate" (insert a breathing tube through the mouth to assist in artificial respiration) may alleviate this concern, but such details can rapidly overwhelm patients and their families. The issues of resuscitation are rapidly becoming more difficult with the availability of implanted devices that provide internal electric shocks to treat otherwise lethal abnormal heart rhythms, according to Stevenson.

"Although we do not yet know the best way to encourage effective communication between patients and physicians, the current study provides a framework that will help us to address the more complex decisions arising in the future," she writes.

More than 4.9 million Americans suffer from congestive heart failure, and the condition is newly diagnosed in about 400,000 individuals each year. Heart failure is the only major cardiovascular condition that is increasing in its incidence and prevalence, accounting for almost 6 million hospital days with total direct and indirect costs of $20.2 billion per year and hospital and nursing home costs near $14.5 billion each year.

The researchers interviewed patients and physicians participating in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a multi-center study underwritten by the Robert Wood Johnson Foundation.

Patients were asked if they understood that artificial respiration was available and whether they would want to be revived by respirator in the event of cardiac arrest. Physicians were asked, "What do you think that the patient would want you to do if he or she had a cardiopulmonary arrest?"

Co-authors of the study are Russell Phillips, M.D.; Mary Beth Hamel, M.D.; Joan M. Teno, M.D.; Paul Bellamy, M.D.; Steven Broste, M.D.; Robert Califf, M.D.; Humberto Vidaillet, M.D.; Roger Davis, Sc.D.; Lawrence Muhlbaier, Ph.D.; Alfred Connors, Jr., M.D.; Joanne Lynn, M.D.; and Lee Goldman, M.D.

American Heart Association

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