In our 2012 Perspective article in The New England Journal of Medicine, my colleague Susan Edgman-Levitan and I urged clinicians to ask patients, “What Matters to You?” as well as “What’s the Matter?” The “What Matters to You?” question has been widely disseminated, with the Journal reporting the article has been cited over 1,000 times. More importantly, we are very gratified the idea has spawned an international “Ask What Matters” movement, catalyzed in no small measure by the Institute for Healthcare Improvement. These efforts represent wonderful ways to understand individual patients better, and to treat them in a way that is consistent with what they care about.
As the “What Matters” idea spread around the globe, a tagline was added: “ask what matters, listen to what matters, do what matters.” The tagline is an important addition because — in addition to asking about and listening to what matters — we must do what matters to reach the full potential of the “Ask What Matters” movement. And we can’t forget that the pinnacle of patient-centered care, as we originally described it back in 2012, is bringing what matters most to a patient when they face a fateful decision.
When patients make decisions about testing or treatment when there is more than one medically reasonable option, they and the people who care about them must live with the consequences of their choices. In addition to informing them about the possible outcomes of the options, clinicians should find out what matters to them, their values and preferences, in the context of the decision. The right decision, whoever makes it, should be consistent with those values and preferences.
When Preventing Death May Not Be What Matters Most
A primary care patient of mine was the working owner of a family-operated service station. He was admitted to the hospital with pneumonia, and to our surprise, was found to have a dilated cardiomyopathy with a profoundly reduced ability of the heart to pump blood (an ejection fraction of 20 percent, less than half the normal amount of blood pumped out with each heartbeat).
Recent randomized trials showed he would be a good candidate for an implantable defibrillator. A defibrillator might save his life in the event of a heart rhythm disturbance since sudden death is common in this condition.
The patient had not finished high school, but he had plenty of “street smarts.” At first, he looked anxious and confused as a consultant cardiologist and I tried to explain the defibrillator option. Then, a broad smile broke out on his face. This seemed incongruous given the sober message we were delivering about his prognosis.
He said, “Ah, you’re trying to prevent the only kind of death I’m not afraid of!” He was right! We wound up not implanting the defibrillator, and writing a “do not resuscitate” order, consistent with his wishes. His heart failure responded to treatment, and he confirmed his decision later even when he was feeling better and back at work. He died suddenly and peacefully four years later when he was in his late 70s, probably of the rhythm disturbance he didn’t want us to prevent.
What Matters in Shared Decision-Making
In the context of a specific health decision, it’s important to inform the patient first of the possible outcomes of the various options. Sometimes, patients need to “construct” their preferences for possible future health states they have never experienced.
For example, a patient with a badly arthritic hip would already be an expert on the degree of pain and functional limitation she is currently enduring. But what would it be like to have a stroke after deciding against blood thinner treatment for atrial fibrillation? For these decisions, the “What Matters to You?” questions need to become more decision-specific:
“What more can I tell you about these choices to help us make the best decision for you?”
“Is there anyone else you’d like to involve in helping us make this decision?”
“What are the most important things to you that we should keep in mind as we decide?”
“Which way are you leaning right now?”
“Do you feel ready for us to decide at this point?”
Using this approach when patients face a fateful health decision helps ensure we ask “What Matters to You” when it matters most.
Michael J. Barry, MD, MACP, is Director, Informed Medical Decisions Program at the Massachusetts General Hospital Division of General Internal Medicine.
You may also be interested in:
The New England Journal of Medicine Perspective “Shared Decision Making — The Pinnacle of Patient-Centered Care”
3 Ways to Make Every Day “What Matters to You?" Day
Person-centered care sessions are a part of the IHI National Forum this December.