Update, Aug. 25, 8:35 p.m.: John McCain died Saturday.
On Friday, John McCain’s office announced that the longtime Arizona senator has chosen to “discontinue medical treatment” over a year after being diagnosed with an aggressive form of brain cancer. Knowing what we know about glioblastoma, the cancer from which McCain suffers, this is an inevitable development. It was only a matter of when. I admire McCain’s decision to share his choice with the public.
I also feel obligated to note that the idea that McCain is no longer receiving medical treatment is simply incorrect. I realize that the statement was likely drafted with the intent of being incredibly direct, and I appreciate that impulse. But what he has announced is what we in medicine call a change in his “goals of care,” and I think it’s worthwhile to make that distinction clear.
Here is what it means to change your goal of care: It means that instead of continuing with treatments designed to cure or prolong life, you transition to care has designed only to alleviate suffering, meaning palliative care and hospice care. These medical disciplines are every bit as important and “aggressive” as curative care, and in cases like McCain’s, they are actually more important. Unfortunately, many patients conflate accepting palliative care with “giving up,” when in fact, it is no different than any other kind of medicine. Palliative and hospice care are not a discontinuation of medical treatments, but rather an escalation of treatments focused on the actual problems at hand—the extremely difficult tasks of being terminally ill and of dying—even if we wish the salient problems were different.
For patients with potentially terminal illnesses, the decision to change their goals from only curative to only palliative (nowadays, these goals can coexist, though that is not McCain’s situation) is a complex one. A person with a 10 percent chance of surviving 10 years may opt for aggressive treatments with the most curative potential if they are young and otherwise healthy, even if these treatments are physically difficult and painful. Meanwhile, your typical 90-year-old would likely be far better off maximizing the quality of the time they have left by forgoing the often miserable oncologic regimens that would prolong their suffering. Doing so would likely rob the remainder of their lives of dignity, frequently at the expense of the very joys that make life worth living to begin with. “Every day I spend here is a day I’m not with my family,” one cancer patient once told me. Of course, no two people are alike, and these differences perhaps become more apparent as we face some of the toughest choices life puts before us. And so some 90-year-olds may have different goals, with perfectly sound reasoning. I’ve met patients who know all too well how much suffering their chemotherapy will continue to inflict upon them, but they are willing to endure it if only so that they may live long enough to see a grandchild’s wedding, or a graduation. I know one person whose goals of care include to do “whatever it takes” to live long enough to see the current president removed from office. (After that, he says, he will accept whatever fate has in store.)
We must keep training ourselves to think of palliative care as medical care because too many Americans die with treatable pain. For example, researchers tell us that barely half of veterans with advanced cancer, like McCain, receive palliative care, and almost one-quarter receive no end-of-life hospice care. There are many reasons for this, but a dominant force is the way in which the American psyche has been molded to think about cancer over the past half-century. Patients “fight” their diseases and are imagined to be soldiers in our nation’s multigenerational “war on cancer.” From this perspective, patients “win” or “lose” their battles with a disease, even if their fate has nothing to do the magnitude of their personal courage or their dogged determination. As a field, oncologists have made strides toward integrating palliative care, but, it must be said, this has happened at a slow rate. Ironically, early palliative care has actually been shown to be associated with longer survival, a surprising result.
The actions of prominent public citizens have tremendous influence on other observers—in fact, often more than expert societies’ guidelines or even a doctor’s advice. McCain’s statement today was a powerful one. He no doubt will die with the dignity that he is owed. But that will not be because he is discontinuing medical care: It is because he is accepting a kind of medical care that is appropriate and commensurate to his condition.
The opinions expressed in this article are solely those of the author and do not reflect the views and opinions of Brigham and Women’s Hospital.
Read more from Slate on John McCain.