“Quality of Life” Up to Patient, Not Bean Counters

We hear much talk about how the health care system should take “quality of life” of the patient into account in medical decision making.  This issue is discussed in the Health Blog over at the WSJ today.  From “Informed Patient: Taking Quality of Life into Account in Health Decisions:”

Quality-of-life questions are becoming increasingly important in medical care, especially when it comes to helping patients make decisions about treatments, today’s Informed Patient column reports. Since the 1970s, researchers have  been using quality-of-life measurement tools for a wide variety of medical conditions, primarily in population studies and clinical trials. Outside the U.S. they are often used by national medical systems to help determine payment policies for more costly drugs or treatments.

And that’s why the concept has been given a bad name.  But now, researchers are looking for ways measure quality of life for use in increasingly clipped interactions between physician and patient:

At Dartmouth-Hitchcock Medical Center, which uses surveys from QualityMetric in clinical care, researchers are also developing their own quality measurement tools including one that uses a “feeling thermometer” to compare how doctors and their patients perceive the impact of Crohn’s disease, an inflammatory bowel condition, on health-related quality of life. A study published in 2010 found that two questions using the feeling thermometer provide a quick and accurate assessment of the burden of the disease on patients, and that physicians’ perceptions of the burden of disease was similar to that of their patients.

Gastroenterologist Corey Siegel, a co-author of the study, says he is eager to get the tool into practice. For patients, while the “burden of symptoms” may go down, the “burden of treatment” — including routine lab tests, frequent colonoscopies, regular injections or IV infusions and 20 or more pills a day — might go up. “The ideal is a low burden of symptoms and treatment, but realistically there are trade-offs that need to be made,” Siegel says. “The optimum use of this tool would be for patients to track the burden of symptoms and treatment so that their providers can understand how they are really doing overall as opposed to focusing on symptoms alone — which is only part of their experience with chronic disease.”

The problem with “quality of life” in medicine isn’t taking it into account, but using it as an invidious method of discriminating against “expensive” patients.  Assuming this approach isn’t abused to push for a desired result, these surveys could become legitimate parts of the informed consent process so long as doctors always remember that one patient’s “unacceptable quality of life” is another’s “glad to be alive.”