In Knocking on Heaven’s Door: The Path to a Better Way of Death, a New York Times Notable Book of 2013, award-winning journalist Katy Butler ’71 recounted shepherding her parents, Professor Emeritus of History Jeffrey Butler and artist Valerie Butler, through their final illnesses. When Butler’s father suffered a stroke and later was given a pacemaker, the family had no idea that the device would extend his physical life years past his cognitive ability to enjoy it or to function independently. After his death, Katy’s mother declined open heart surgery and chose instead to meet her own death head-on. From this experience Butler presents her provocative thesis: Modern medicine, if allowed a single-minded focus on maximum longevity, will often create more suffering than it prevents. She has spoken on improving doctor-patient communication at Harvard Medical School and numerous hospitals around the country. Her upcoming book is The Art of Dying Well: a Practical Guide to a Good End of Life (Scribner, Jan. 2019).
Q: How would you characterize the American health care system?
Katy Butler: Absolutely brilliant with fixable problems—infectious diseases, drug overdoses, car accidents—where throwing many tests and treatments at someone has tremendous results. But when confronted by complex health problems that aren’t amenable to a quick fix, this kind of “fast medicine” can be pretty disastrous.
Q: Why is this?
KB: Our insurance system, known as fee-for-service, pays physicians on a piecework basis—for volume, not quality. We don’t reward them financially for taking extra time with a patient who has multiple problems that need to be managed but can’t be fixed—the kind of problems that redouble as people get older.
Q: How would we judge quality in health care?
KB: Quality should be defined as actually improving the patient’s life. Traditionally, medicine’s goals have been to improve function, to relieve suffering, and to prolong life. Currently, the hyper focus within medicine is on prolonging life—which also happens to be the best-compensated option. We rate surgeons on whether a patient survives for 30 days after surgery; but we don’t track whether that patient—especially an older, fragile patient—ends up so disabled by the stress that they have to move to a nursing home. And that happens quite a bit.
Q: Why do we not discuss these concerns with our doctors?
KB: The communication between doctors and patients around end-of-life questions is absolutely terrible. It’s almost as if we need a foreign-language phrase book. For instance, if the doctor says, “I want to talk to you about your goals of care,” the patient might well not understand that the doctor is probably saying: “The time you have ahead of you appears to be limited, and, given that, how do you want to spend your time? Do you want to take a trip, or see a child graduate? Can medicine help you achieve this? And, if not, what are some achievable goals?” Patients can be equally tongue-tied about what matters most to them.
Q: And will you work on such a guidebook?
KB: Hopefully my upcoming book will encourage people to coax their doctors into more honest conversations, not only close to the end of life, but whenever illness is complex or incurable.
Q: What’s a phrase you might use to speak frankly to your health care provider?
KB: “I really want a clear image of what’s ahead of me, so I can plan. I need to know not only whether I have years or months ahead of me, but whether I can continue working, or will I need caregivers, or good pain management.”
There’s often a tremendous gulf between what the patients believe is the purpose of treatment and what physicians know. More than half of patients with terminal cancer never hear from their doctors that this is not a survivable illness. Three-quarters think treatment might cure them, when their doctors know that it might gain them only a few more months. As a result, many terminally ill people get hospice services late in the game, and they agree to harsh, futile treatments that damage the quality of the little life they have left.
Bridging the communication gap allows patients to make choices based on accurate information. It’s empowering. Patients falsely believing another round of rigorous chemo will provide a cure might actually lose a real-life opportunity that truly mattered to them—like taking their grandchildren to Walt Disney World.
Q: What about those who believe that if a patient has hope, being cured becomes a possibility?
KB: The research suggests otherwise. People who know the truth don’t die earlier or suffer more emotionally than those kept in the dark. People with terminal illnesses who get palliative care live longer—research with lung cancer patients has demonstrated this. They spend less time in the hospital and they feel and function better. They stop intensive treatments—which can be futile and damaging—earlier than other patients do. But difficult, honest conversations like these take skill and time.
Q: I’ve heard the term “slow medicine.” Is this it?
KB: That’s one dimension of it. Slow medicine, akin to “slow food,” values giving doctors the time needed to truly benefit a patient. This might mean coaching someone to exercise more, conducting a longer physical exam, listening, prescribing more judiciously, and thoughtfully weighing the benefits and risks of treatment, especially for the frail with multiple health issues. The opposite is fast, fragmented treatment, delivered by three or four specialists who never talk to each other.
My friend, Victoria Sweet, a physician and author of the book Slow Medicine said, “Medicine is not only a right and a commodity; it is a relationship and a spiritual practice.” That’s the essence of slow medicine. I think we had more of it in the 1950s, when specialties were fewer and GPs made house calls.
Q: Why are house calls important?
KB: When a doctor comes into your house, they see you; they see your context. If you have a kid with asthma and you live in a dusty house, they see that. And maybe the best intervention would be a once-a-week housemaid service, not another drug or hospitalization.
Particularly when people are frail, visiting a doctor’s office is exhausting, and hospital stays are stressful. If an elderly person falls, even if it’s not serious, they’ll often be sent to the ER, where they’ll spend hours and might even be admitted to the hospital for a few days—at enormous cost to Medicare and little to no health benefit. They may develop delirium and deteriorate further, resulting in a three-week nursing home stay. A simple house call could have prevented that grueling cycle.
Q: So how do we make systemic changes toward slow medicine?
KB: I keep wondering about that. One hopeful analogy is the natural birth movement in the 1970s, when many women voted with their feet—or their wombs. They hired lay midwives and gave birth at home. Obstetricians took notice of the competition, and the result was the creation of more humane birthing rooms in hospitals.
Maybe we need a movement called “Care not Cure.” We seem able to fund attempts to find a cure for Alzheimer’s or cancer—with very little apparent progress—but we won’t fund support for caregivers and patients right now who want to live and die at home.
We need to change the insurance reimbursement system so that health care puts patients at the center, not at the convenience and priorities of specialists, hospitals, and drug- and device-makers. This will mean paying more for human, face-to-face medical encounters and less for high-priced interventions—rewarding time over technology. Hospice should be expanded to cover anyone within 18 months of dying, and reimbursement rates should be tripled to fund more practical help in the home. More than three-quarters of us would prefer to die at home, but only half of us do so; this has to change.
Q: Where will we find doctors who will give home care?
KB: There are small services scattered throughout the country, and Medicare is funding pilot programs to fund them better. Then there’s a new specialty, palliative care, for people with serious long-term illnesses. It’s focused on improving function and relieving suffering rather than prolonging life or attacking disease head-on. Some geriatrics doctors make house calls, but because of fee-for-service reimbursement, geriatricians are poorly paid, and their numbers are in dangerous decline. I think that a lot of slow medicine is going to come from people now considered ancillary. It can be done—and is done extremely well—by nurses, social workers, and nurse practitioners; we need to empower them.
I have a Facebook group, Slow Medicine, where about 4,000 medical professionals and family caregivers share advice. I see the depth of wisdom from people who have very little “official” training but a lot of experience—in predicting when people are going to die, in knowing how to have a conversation with family members. They’re not empowered to do these things, but they are really good at them.
I think we are going to need to spread the burden.
Q: Is there any group that is doing
KB: PACE—Programs of All-Inclusive Care for the Elderly—is an incredible program funded primarily by Medicare and Medicaid. It’s a coherent package of medical and practical care for people who, without it, would have to go into a nursing home. It provides not only medical care, but soup-to-nuts services, like dental care, physical therapy, entertainment, transportation to and from medical appointments, even delivering diapers and meals to the home. These recipients do have family or some support—but if they didn’t have a day care program, or a van to drive them to their medical appointments, or whatever, they’d probably have to go into a nursing home because they’d burn out their families and be institutionalized.
Only about 40,000 people in the country are in PACE, but it’s the model for the kind of coordinated care that people in their advanced years need. It doesn’t differentiate between practical care and medical care. It considers both valuable. Everyone should have access to it.
Q: Tell us about Medicare Part Q—a concept you conceived. What is it?
KB: I’ve been on Medicare for a few years, and I’m very healthy for my age. And I’m also very clear on my values. I wrote an op-ed for The New York Times declaring that I would never want certain kinds of interventions:
I do not want to be admitted to intensive care after the age of 75; my chances of coming out with any decent quality of life are very low.
I do not want an implanted defibrillator, which shocks the heart and can do so repeatedly, even on the deathbed. These devices cost Medicare at least $35,000 to implant—and many thousands to continue to monitor.
I would never want a heart replacement, like an artificial heart pump—which costs Medicare more than half a million dollars.
I would not want an organ transplant. I wouldn’t enjoy long-term benefits, and I’d be depriving a 22-year-old of an organ they could use to get 60 more years of life.
So I say, “This is unfair: Medicare will pay for expensive interventions that are unlikely to give me more than a few extra months‚ perhaps of dubious quality, if not outright suffering—but it won’t pay adequately for a physician house call or a ride to the supermarket, even if those things could keep me in my own home.”
I’m suggesting Medicare create a “Part Q” (for “quality of life”). It would be voluntary. It is a bit of a rhetorical gesture, my way of saying, “I would be willing to sign a piece of paper ahead of time, saying, ‘I let Medicare off the hook for those big-ticket death-phobic procedures. But in return, when I’m in decline, give me two years of home-based palliative care similar to PACE.’”
We’ve watched our parents go through extremely long, lingering, painful deaths and we’ve wondered, “What was that for? Who really benefited? Why didn’t someone warn us?”
Q: What is crucial for us to remember as we begin to make decisions about our later years?
KB: I think we have to hold on to ourselves as full human beings with a spiritual and an emotional dimension and not just a physical existence. We are more than a bundle of medical diagnoses. Many of us care more about preserving function, delaying disability, easing burdens on our loved ones, and attending to the emotional work of the end of life, than we do about prolonging life to its last teaspoon. We need to make our priorities clear to our doctors, because otherwise they will assume we want only to ward off death, no matter what the cost.
We need that sense of empowerment. We have to take back our own moral authority, because the health system itself is broken and adrift; it has become amoral.