By: Joseph W. Shega, MD
Quality of life is a basic, patient-centered experience measure that incorporates physical, emotional and psychosocial well-being. We ask loved ones to rate the patient’s quality of life. We expect clinicians to give their patients’ QOL a number. And, of course, we ask patients themselves about their quality of life.
From my perspective as a scientist and academician, quality of life is difficult to pin down. You can put a number on it, but you can’t. There is no data to crunch. My idea of quality of life may not be yours; yours may not be the same as Mr. Gonzalez’s, who has stage 4 liver cancer. Quality is relative—and mutable.
But that’s one of the exquisite things about hospice, as I see it. We have an opportunity to learn the myriad ways that patients define “quality” and how the perception of quality changes over time.
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The Patient is Always Right
Hospice clinicians have learned to listen to their patients, to read body language, to concentrate on the patient when all the family is talking at once. But there’s still a lot we can miss.
A 1997 study of cardiovascular patients compared patients’ ideas of good quality of life with what their physicians and families considered important. The patients’ standards of quality of life turned out to be very different from those of their families or physicians. Despite all our well-meaning talk and well-educated observations of others, no one has walked in the patient’s slippers.
Surgeon and writer Atul Gawande recommends we pose five questions to patients who are nearing end of life. These questions can help patients, families and care teams prioritize what’s important for the patient right now. And we should continue to ask these questions periodically because, as we all know, plans can change.
- What is your understanding of your current health or condition?
- What are you goals and priorities?
- What are your fears?
- What outcomes are unacceptable? What are you willing to sacrifice or not sacrifice?
- What would a good day be like?
The goal of hospice is to make life as good as it can be for as long as it can be. We call that—generally—quality of life. But we know we have to ask the right questions and listen very carefully to get it right for each patient.
Joseph W. Shega, MD, is senior vice president and national medical director for VITAS Healthcare.