I confess to having begun this book with a bit of fatigue—here’s yet another in what seems like an endless series of books about death and dying, and how, if only we Americans would face reality, we could all go off to heaven cheerfully. Notwithstanding the hundreds of works on this topic—On Death and Dying, The Good Death, Final Exam, and The Last Lecture, to name a few—death remains for most of us still too terrifying, too final, and too inconceivable to think about. Given the powerful evolutionary pressure to avoid death at any cost, our distaste for the subject is predetermined, no matter how many pundits advise us to think otherwise.
But does this primal denial of death mean we have to accept the status quo—the unacceptably high rate of death in hospitals and intensive care, the revolving door in and out of ERs, the frustration, confusion, and misery surrounding the process for patients and their families alike? Atul Gawande, a Harvard surgeon, author, and journalist, faces down the paradox and shines a light on better alternatives:
Some will be alarmed by the prospect of a doctor’s writing about the inevitability of decline and death. For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed—victims of our refusal to accept the inexorability of our life cycle? And what if there are better approaches, right in front of our eyes, waiting to be recognized?
Gawande’s new book, Being Mortal: Medicine and What Matters in the End, is another tour de force in his series of dissections of our health-care system and what makes it fail so often. In Better, he focused on the characteristics of good leaders (diligence, “doing right,” and ingenuity) and how these traits influence important societal priorities; in The Checklist Manifesto, he wrote about rising complexity as the enemy of quality outcomes and the impact of acknowledging our need, no matter how smart we may be, to use systems thinking (the checklists of the title) to reduce error as much as possible. As in those books, Being Mortal combines systems analysis, narrative journalism, personal recollection, and deep-dive reporting to give voice to people living and working on the frontiers of serious and end-stage illness. The result is a story that turns the author’s observing eye not only on his subject but also, powerfully, on himself. That Gawande is a practicing general surgeon at Brigham and Women’s Hospital in Boston makes this book all the more impressive, as surgeons are not generally known for the holistic, contingent thinking on display here.
Like the late Sherwin Nuland, also a prominent surgeon and author of the 1994 best-seller How We Die, Gawande has escaped the bounds of his professional culture and is able to shift his focus from close-up—his father’s deathbed, his mother-in-law’s assisted living facility, his clinic and operating room—to a 30,000-foot view of the means and ends of medicine. In Gawande’s work, from his books to his essays in The New Yorker, there is a powerful vein of optimism and a belief that with human ingenuity, an engineer’s approach to systems, and a willingness to measure and report what we are doing, the human condition, sickness, and even dying can be brought within our compass.
Being Mortal opens with the contrasting stories of the aging and deaths of Gawande’s grandfather in India and his wife’s grandmother in the United States. Sitaram Gawande was 110 years old when he died, a successful farmer-landowner, and a revered patriarch surrounded, and lovingly cared for, by his large and devoted family in India. In Virginia, Alice Hobson lived independently and alone in her own home until she could no longer. Taken together, their experiences suggest different ideas about what successful aging looks like. On the one hand is the image of the old man honored and cared for by his progeny. On the other is the vision of someone managing to live alone, still sharp as a tack, into old age.
But these stories of aging are not quite as idyllic as they sound. Sitaram Gawande lived more than a century and died, after a fall, quickly—which is probably how we all want to go. But in India, his longevity meant that his children, by then quite elderly themselves, never gained control over their own lives, land, and money, which seeded conflict, anger, and resentment in his family. Meanwhile, Alice Hobson determinedly stuck it out at home alone, until frailty, falls, and progressive memory loss forced her into a retirement community. She never adjusted to leaving her home, and gradually declined while waiting to die.
Gawande explores why so many people are living to the extremes of old age. The things that used to kill us quickly—overwhelming infections, heart attacks, cancer, strokes—have been either controlled by antibiotics or converted into chronic illnesses with which we live for many years before death. The fact that routine survival to old age is a very recent phenomenon in human history explains why we are having so much trouble figuring out how to accept and manage the truth of aging and decline.
No more than 150 years ago, infant, child, maternal, and young-adult mortality were commonplace, mostly due to infection. Every household experienced deaths from myriad causes, be they infections during infancy, tuberculosis at midlife, or accidents or acts of violence. Heart disease, dementia, and other chronic conditions occurred but were unusual—if people lived long enough to get one of these, they died of it quickly. Once the germ theory of disease was accepted, and societies began separating sewage from drinking water in the nineteenth century, life expectancy leaped upward. The discovery and dissemination of antibiotics after World War II added more years to the average U.S. life expectancy, for a total gain of about 30 years in the century between 1900 (47.3 years) and 2010 (78.7 years). Modern medicine and its chemotherapy, heart transplants, and intensive care units account for only a small fraction of this improvement. For those of us who make it to age 65, we can expect on average to live another 19 years, to 84.3 years of age. If we make it to 75, we can expect to live on average 12 more years. This kind of longevity is unprecedented in human history and has occurred in the blink of an evolutionary eye—the last 100 years. Perhaps we can be forgiven for not yet having figured out how to handle this new reality.
Understandable as our denial and lack of planning may be, the consequences for us as individuals, as families, and as a society have been considerable. For one thing, we simply have not created a workforce that can take care of our aging population. As the proportion of people over 65 grows, the number of geriatricians—physicians specializing in the medical care of the elderly—is declining. Geriatricians are paid less than colleagues with fewer years of training and experience. The work is challenging and time-consuming. It is impossible to do a good job with a frail older person with multiple medical problems in the ten minutes most doctors are able to spend with an average patient. Given the fact that the typical medical student in the United States now graduates with hundreds of thousands of dollars in debt, the fact that we fail to recognize and compensate this important work matters. It isn’t surprising that the most popular medical specialties today, open only to those physicians graduating at the top of their class, are plastic surgery and dermatology.
This neglect in preparing a skilled workforce is exceeded only by the appalling quality of “care” our current system enables for vulnerable older persons. A front-page New York Times article from last fall described the abusive—there is no other word for it—care received by a 91-year-old from New York City’s best hospitals, nursing homes, and hospices, despite his devoted daughter’s valiant efforts. His repeated wish to be cared for at home notwithstanding, there was no way to pay for the care he needed there. As a result, he spent the last two years of his life in a revolving door between costly nursing homes and hospitals, developing multiple pressure ulcers and severe pain. The story exemplifies how Medicare and Medicaid in their current forms fail to meet the basic needs of frail older persons because of their perverse financial incentives that promote frequent transfers from hospital to nursing home and back, which actually cause significant harm.
When people do end up in nursing homes, the experience is often poor. With some important exceptions, these facilities are too often understaffed, and the care workers employed are underpaid and undertrained. Though nursing homes are highly regulated by state and federal rules, these rules comport to a medical model—keeping people “safe” and fed. That means restraints so you don’t fall and feeding tubes so you don’t lose weight, as if somehow the aim of the nursing home is to return you to some earlier phase of life when you were not old and frail and nearing the end. As Gawande writes:
This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people that reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.
And the attempt to achieve a safe and medically controlled existence during old age? “That experiment has failed,” Gawande argues. “If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done.”
Displaying the optimism that has defined his work, Gawande searches for alternatives to the narrow, medicalized path we’ve created for ourselves. Despite the financial constraints, bureaucratic strangleholds, and complexity and challenges of caring for this population, visionary leaders have shown that there are better ways. He finds Bill Thomas, founder of the Green House Project, whose aim is to “attack what he termed the Three Plagues of nursing home existence: boredom, loneliness, and helplessness.” Thomas recognized the essential human need to be of use, to have a reason to live, and to be in relationships with the living, whether with other people, with animals or birds, or even with plants. When he got started, it was against regulation to have animals or birds in a health facility. Thomas overcame regulatory bureaucracies through determination and persistence, finding that, among other acts, bringing pets, birds, and children into the nursing home and giving its residents something to take care of and care about not only prolonged their lives, but markedly improved the job satisfaction and well-being of the staff. Thomas flips the nursing home model—typically highly regimented, focused on safety and risk avoidance—and instead establishes small communities within each facility that cluster people in groups with consistent staff, their own kitchen, no rigid schedule, and a culture that puts the residents in control of when they eat, bathe, and sleep.
Another example of a nursing-home model that has broken the mold is the Comfort Matters program, which was established in Phoenix, Arizona, and sees its role as responding at all times to residents’ needs—for example, if a resident becomes agitated and distressed, rather than using drugs or restraints, the staff assume the person is in pain or uncomfortable and respond accordingly. This approach has virtually eliminated the use of strong tranquilizers and physical restraints in Comfort Matters homes and is being tried in pilot programs in multiple nursing homes in New York City and Chicago.
Taking on the big questions—What are the ends of medicine? And for that matter, what are the ends of a decent society?—Gawande writes: “The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul.” Indeed, compared with other nations, the United States spends much less on social supports (such as providing personal-care aides in the home) and much more on medical care per person.
Gawande concludes that the ends of modern medicine, at least in America, are an unspoken attempt to help us live forever. The poverty of that cognitive frame is seen in how we deliver and pay for health care in this country, with results all too commonly like those exposed in the Times. Under Medicare statute and most commercial payers, health insurance is limited to coverage of services that are “medically necessary.” You get what you pay for in our predominantly fee-for-service health-care system—and what you pay for are hospitals, specialist visits, diagnostic procedures, invasive treatments, and surgery.
That said, there is change afoot. As the Affordable Care Act (ACA) moves our payment system away from the fee-for-service, pay-for-volume system toward a system where providers accept financial risk and become more focused on quality than quantity, glimmers of flexibility about what gets paid for are emerging. For the first time in my three-decade career, we are seeing operating dollars at hospitals spent on social supports like helping patients find safe and affordable housing. One example of progress in this direction comes from my own hospital, which responded to the financial penalties imposed by Medicare in the ACA on hospital readmissions within 30 days by hiring 80 social workers to go out into the community to identify and address the determinants of frequent emergency room and hospital use. The problems they identified included unsafe housing, lack of family support, high levels of family violence and trauma, low literacy, language barriers, untreated mental illness, and overwhelmed family caregivers. When these issues were addressed, 30-day readmission rates plummeted.
Turning away from over-medicalization of geriatric care can lead to some surprising results. Consider palliative care, a relatively new specialty focused on achieving the best possible quality of life during serious and complex illness while still administering disease treatments. Studies have shown that people receiving palliative care—which involves skilled communication about what to expect as well as attention to pain, symptoms, and the stress of serious illness for both the patient and family—actually live longer than folks who get only disease-directed care. Such patients are more likely to find life worth living, and the fact that they are spared severe pain, depression, and family exhaustion means that they also spend a lot less time in hospitals. Not only does that cut costs—hospitals are by far the most expensive setting of care—but it also leads to better health outcomes, since hospitals are also the most dangerous setting for frail, older, and seriously ill people, due to antibiotic-resistant infections, medication errors, and procedural complications. (Such problems with hospitals are thought by many experts to be the third leading cause of death in the United States.) “The lesson seems almost Zen: you live longer only when you stop trying to live longer,” Gawande writes.
Gawande stops just short of an analysis of why our system is the way it is. He mentions the role of the ACA in beginning to shift medical care toward a system that pays for better clinical results and financially penalizes overtreatment and poor care. Although more than 40 percent of current Medicare beneficiaries are now in some form of managed care, most clinicians and health-care organizations are still predominantly compensated through a fee-for-service model—hence the pressure to see more doctors, get more scans, try more treatments. Progress in making this transition to a new payment system that rewards quality instead of quantity has been frustratingly slow, a phenomenon that is not surprising when we consider that nearly 20 percent of the U.S. economy is tied up in health care (roughly twice the spending of any other developed nation). Change in how we pay for medical care means real harm to the medical-industrial complex. The big-money interests in health care, such as pharmaceutical companies and device manufacturers, lobby effectively to prevent any policy change that might diminish their profits.
A particularly egregious recent example is the $84,000-per-treatment cost of a new drug for hepatitis C (Sovaldi, from Gilead Sciences) in the United States. The same course of treatment costs $900 in Egypt, $2,000 in India, $56,000 in Canada, and is under active price negotiation in many other nations. Gilead earned over $3 billion in the second quarter after the drug’s release, charging about $1,000 each for pills that cost at most $100 to manufacture. In other countries, governments protect their taxpayers by negotiating prices with manufacturers. In our country, the government is prohibited from doing so by law.
But analysis of these root causes and the barriers they pose to the fundamental change that we need is not to be found in this book. I hope that Gawande plans to address these questions in a future work. We need a writer with his ability to translate the complex relationships among health care, politics, and money into a story that brings clarity. Our health-care system and our nation depend upon it.
Gawande describes how he used what he was learning as he researched this book to care for his own father during his struggle with progressive and debilitating spinal cord cancer. His father had surgery and radiation, and faced decisions about further treatment as the disease worsened.
The pressure remains all in one direction toward doing more…because the only mistake clinicians seem to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.
He asked his father a few simple but very difficult questions. He asked him what his understanding was of what was happening to him. He asked about his fears, his goals if his condition worsened, the trade-offs he was willing to make and not make. “These questions were among the hardest I’d asked in my life,” Gawande writes. “I posed them with great trepidation….But what we felt afterward was relief. We felt clarity.”
Being Mortal grapples with some profound questions: What gives life its meaning? What really matters in the end? Gawande’s willingness to take on these questions is profoundly compassionate and humane—a gift to all of us.