With nonstop news competing for our attention, it often feels impossible to reflect and ponder the learning moments. In the seven weeks since the death of Barbara Bush, we’ve thought a lot about one of her final, life-enhancing lessons.
As First Lady, Barbara Bush set a memorable standard of decency, straight talk and common sense. Just before she died, she did something somewhat remarkable, and it spoke volumes about her wisdom and character. At the same time, it was something patients in her situation rarely discuss publicly: She announced that she was going on “comfort care.”
As a doctor and nurse, we reacted with sadness and relief. We hoped that Mrs. Bush was comfortable physically, coping well psychologically, and at peace spiritually. We wished for her the kind of death that we know long-term care professionals can provide when all the pieces of the puzzle fall into place. For many patients and their families, the notion of choosing to stop life-prolonging treatment is unthinkable. Disagreements over when to “give up” can tear families apart, precisely at a time they should be coming together.
It doesn’t have to be this way.
We can change course by helping people living with a serious illness understand the benefit of choosing comfort care.
When physicians and nurses mention comfort care, which goes by different terms but ultimately signals an acknowledgment that death is the outcome of one’s medical situation, patients and families often hear defeat. But Mrs. Bush taught us a different way of looking at the term.
Comfort care prepares us to face the last phase of our lives and creates space for us to reach out and connect. What comfort care really means is a different kind of intensive care, one that treats pain, strengthens coping and opens lines of communication, love and spiritual connection. It may occur at home, like it did for Mrs. Bush, or in a home-like setting. It allows us to be surrounded by family and friends, if we wish, rather than clinicians and their staff. Focusing on comfort signals a reliance on deep medical and nursing knowledge, and a willingness for patients, clinicians and families to collaborate to ensure that the patient’s needs and preferences are met.
Too often, people equate “choosing comfort” with “giving up.” We’ve heard patients say “I’m a fighter,” or families say, “But Mom’s a fighter!” more times than we can count. So we worry, as advocates for older adults in America, that when some hear that Mrs. Bush chose comfort care and died soon after, it might make people think that choosing this approach to care is tantamount to choosing death, or that comfort care might have led her to give up. Nothing could be further from the truth. Barbara Bush showed her characteristic bravery, grit, strength and compassion by choosing comfort, and by making her choices known.
Doctors and nurses and other staff at hospitals haven’t made it easy to understand this. Our health systems readily suggest that patients should get more blood tests, order more scans, try more surgeries, or explore another procedure. Why? Because we want to offer hope even in dire situations. We feel we’re not doing our job if we don’t. Consequently, we often fail to provide patients and their families with a clear picture of the future. When we do talk about going on comfort care, even we might speak of it as if it’s giving up. Consequently, when we finally get around to actually talking to our patients about dying, it’s often right around the corner.
There is a certainly a time in most illnesses for tests and procedures. What we have learned from decades of experience, however, is this: There is no scan that can tell us what will give a person comfort. There is no lab test that can tell us how much forgiveness is needed. There is no genetic test that can tell us which member of the family is really the closest. Furthermore, there is no excuse for not making comfort more central in the life of anyone with a serious illness.
Although the term “comfort care” is not used in every hospital, nursing home or skilled nursing facility, it is available everywhere. The point that Mrs. Bush made so elegantly is that facing the end of life does not have to be about fighting while connected to breathing machines, intravenous lines and sensors. The end of life can be about comfort, family legacies and love.
Anthony Back, M.D., is professor at the University of Washington and Fred Hutchinson Cancer Research Center and codirects the UW Center for Excellence in Palliative Care with Randy Curtis.
Terry Fulmer, Ph.D., RN, FAAN, (right) is the President of The John A. Hartford Foundation in New York City, a national foundation dedicated to improving the care of older adults.