Quality, Not Length of Life, Important

Doctors Should Explain Treatment Outcomes That May Impair Patient By Jeanie Davis

WebMD Medical News

April 3, 2002 -- More patients would choose to die rather than have extensive treatment -- that is, if they knew their quality of life would be severely altered afterward.

A new study from a group of Yale researchers looks at the issue of quality in end-of-life care. For the past 25 years, it has been standard hospital procedure for patients to indicate whether they choose life-sustaining treatment or not. Yet too often, the discussions of these treatments are too limited, they say.

"A central component of quality end of life care is honoring patients' preferences," says lead author Terri R. Fried, MD, an epidemiologist with Yale University School of Medicine. Her study appears in this week's New England Journal of Medicine. "If patients preferences are to be honored, they must be well understood."

What do seriously ill patients give highest priority, when they are at the end of life? Do they want the extensive tests or surgery if they might die anyway? What if there's a good chance that they will live longer but have a serious impairment?

In her study, Fried and colleagues looked at this complex issue. They talked with 226 persons -- all 60 years old or older -- who had limited life expectancy because of cancer, congestive heart failure, or chronic obstructive pulmonary disease.

With each patient, researchers discussed possible treatments and what they involved. What researchers called "high-burden" treatment involved a monthlong hospital stay with extensive tests. "Low-burden" treatments meant no more than a week in the hospital with just a few minor tests.

Patients were told whether the outcome was a certainty -- whether it would return them to good health -- or if there was a chance they would die soon anyway. Patients were also told if they would likely have a severe impairment afterward.

The findings: 98.7% patients chose the less-involved treatment that would return them to good health. However, when the more extensive treatment was their option, only 11.2% chose it -- with the rest choosing to die instead.

As the likelihood of an adverse outcome increased, fewer patients were willing to choose the treatment, says Fried. Even fewer chose treatment when they realized they would have a physical or mental impairment afterward.

If it meant living with a physical impairment -- that they would be bed-bound and unable to get to the bathroom or do any daily activities alone -- 74% decided against the treatment. When severe mental impairment was likely -- meaning they would not be aware of their surroundings and unable to recognize family members -- almost 90% decided against it.

"Clearly, treatment outcomes are a strong determinant of patients' preferences," writes Fried.

Her study has some limitations, Fried acknowledges. The patients in her study may not have considered themselves to be close to death. Also, the set-up of the study forced patients to choose between a particular treatment and certain death.

"In reality, however, the choices may not be so simple." Some patients may opt for alternative therapies that relieve symptoms like pain, she says.

However, the study "has important implications for advanced planning," writes Fried. While doctors typically focus on discussing specific interventions -- like cardiovascular resuscitation -- they may not give patients the full picture of the outcome afterward.

"Without explicit consideration of functional and cognitive outcomes, patients are likely to have overly optimistic expectations of the results," she writes. Clarifying this picture is "especially important, since our study showed that many patients would not want to receive treatment if there was even a 50 percent chance of severe functional or cognitive impairment."

"What, then, are doctors, patients, and families to do?" write Diane E. Meier, MD, and R. Sean Morrison, MD, of New York's Mount Sinai School of Medicine, in an accompanying editorial.

"When desperately ill patients and their families opt for desperate treatments, they should also be asked under what circumstances death would be preferable to life with severe impairment ... and whether treatments should be discontinued if those circumstances occur."

Possibly, giving a therapy a limited trial is one answer, say Meier and Morrison. "Patients, families, and doctors need an escape route. ... If the worst happens, life-sustaining treatment can be stopped according to the patient's wishes."

What do seriously ill patients want medical treatment to do? Relieve their suffering, help minimize the burden on their families, and provide them with a sense of control, studies have shown. Physicians can help by discussing these issues more openly, say Meier and Morrison.

Also, by talking with patients about home care, hospice services, and pain-relief therapies, doctors can show "genuine expressions of respect for patients' autonomy," they write.