Paradoxically, though perhaps not surprisingly, Christians often
do not cope any better than anyone else when it comes to facing
their own mortality. In my review of
one of Raymond Smullyan’s books, I quoted a story of
a man who, when pressed for his beliefs about the afterlife, said,
“I suppose I shall enter paradise and enjoy total bliss for
all eternity, but must we talk about such unpleasant subjects?”
It is not only death itself, but the process of aging and dying,
that most people do not want to talk about or even think about.
As a result, when illness or infirmity strikes, they are taken by
surprise, and do not always make the decisions that they would if
they had thought through things well in advance.
Being Mortal is the most recent book by Atul Gawande, a surgeon who has written several eye-opening books about the medical profession: Complications, Better, and The Checklist Manifesto. Being Mortal tackles the subject of death itself, and in my opinion is Gawande’s finest work of all.
One might think that since the medical profession has to deal with terminal illness and death on a daily basis, it would be well equipped to help patients navigate these difficult waters. But the truth is quite the opposite. Back in 2009, I reviewed Final Exam by Pauline Chen, a surgeon who provided her own personal reflections on the medical profession’s seeming inability to face death in a cogent manner. In Being Mortal, Gawande puts the point this way:
I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering. This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing.Gawande approaches the subject of mortality from multiple perspectives. He begins with a look at how society copes with aging, and points out the stark contrast between the current norm in developed countries, where people typically live out their final days in institutions, and the traditional model, still followed in many developing countries, where the elderly live out their lives at home in a multi-generational context, cared for by younger relatives. He traces the causes for the shift, which include the increase in life expectancy afforded by modern medicine, the loss of the role of the elderly as guardians of knowledge and experience, and the growing urbanization of the world. Interestingly, although some might yearn for the “good old days” when the elderly could count on their children and grandchildren to take care of them, Gawande points out that the traditional household was full of generational tension, and that the trend towards adult children living separately was not necessarily a bad thing for the elderly.
Historians find that the elderly of the industrial era did not suffer economically and were not unhappy to be left on their own. Instead, with growing economies, a shift in the pattern of property ownership occurred. As children departed home for opportunities elsewhere, parents who lived long lives found they could rent or even sell their land instead of handing it down. Rising incomes, and then pension systems, enabled more and more people to accumulate savings and property, allowing them to maintain economic control of their lives in old age and freeing them from the need to work until death or total disability. The radical concept of “retirement” started to take shape.Nevertheless, aging inevitably causes physical deterioration sooner or later, raising the acute problem of how to deal with it.
It seemed to me that, with just a forty-minute visit, Bludau needed to triage by zeroing in on either the most potentially life-threatening problem (the possible metastasis) or the problem that bothered her the most (the back pain). But this was evidently not what he thought. He asked almost nothing about either issue. Instead, he spent much of the exam looking at her feet.Bludau had recognized that his patient’s greatest risk was of falling. “The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness.” This patient had at least two.
I asked Chad Boult, the geriatrics professor, what could be done to ensure that there are enough geriatricians for the surging elderly population. “Nothing,” he said, “It’s too late.” Creating geriatric specialists takes time, and we already have far too few. In a year, fewer than three hundred doctors will complete geriatrics training in the United States, not nearly enough to replace the geriatricians going into retirement, let alone meet the needs of the next decade.
In any case, with or without geriatricians, people inevitably lose their independence at some point, and many end up in nursing homes. Gawande outlines the somewhat surprising history of how nursing homes came to be. Prior to the mid-twentieth century, the elderly would often wind up in poorhouses. Then, after World War II, modern medicine blossomed, and hospitals mushroomed.
As hospitals sprang up, they became a comparatively more attractive place to put the infirm. That was finally what brought the poorhouses to empty out. One by one through the 1950s, the poorhouses closed, responsibility for those who’d been classified as elderly “paupers” was transferred to departments of welfare, and the sick and disabled were put in hospitals. But hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. The hospitals lobbied the government for help, and in 1954 lawmakers provided funding to enable them to build separate custodial units for patients needing an extended period of “recovery.” That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes.Nursing homes really got going in the late 1960s, when Medicare was introduced and the Bureau of Health Insurance required only that a hospital be in “substantial compliance” to receive Medicare benefits. This opened the door to thousands of nursing homes being approved. Nowadays, about half the American population will typically spend a year or more in a nursing home. Although today’s nursing homes are certainly an improvement over the poorhouses of yesteryear, this brief history shows that they were never designed to be meaningful places to live out the last years of your life. They retain the atmosphere of a hospital or of an institution, not of your own home.
Today, assisted living is regarded as something of an intermediate station between independent living and life in a nursing home. But when Keren Brown Wilson, one of the originators of the concept, built her first assisted living home for the aged in Oregon in the 1980s, she was trying to create a place that would eliminate the need for nursing homes altogether. She’d wanted to build an alternative, not a halfway station. Wilson believed she could create a place where people like Lou Sanders could live with freedom and autonomy no matter how physically limited they became. She thought that just because you are old and frail, you shouldn’t have to submit to life in an asylum. In her head she had a vision of how to make a better life achievable.One of Wilson’s crucial ideas was to insist that the customers be treated not as patients, but as tenants who were living in their own home. Even when their mental faculties deteriorated, their families could still negotiate which choices and risks were acceptable; under no circumstances would “the institution” take over. Wilson’s first assisted living centers were enormous successes. Unfortunately, various pressures have pushed assisted living centers away from their original vision. Gawande interviewed Wilson to find out the reasons. Wilson said that one reason is that it is much easier to prioritize tasks over people. It is faster and more efficient to dress someone than to let them dress themselves, and it is easier to measure whether someone skips their medications or falls than to measure whether they are lonely.
Most frustrating and important, Wilson said, assisted living isn’t really built for the sake of older people so much as for the sake of their children. The children usually make the decision about where the elderly live, and you can see it in the way the places sell themselves. … Above all, they sell themselves as safe places. They almost never sell themselves as places that put a person’s choices about how he or she wants to live first and foremost. …
It’s the rare child who is able to think, “Is this place what Mom would want or like or need?” It’s more like they’re seeing it through their own lens. The child asks, “Is this a place I would be comfortable leaving Mom?”Still, Gawande describes several places that are working hard at creating a better alternative: Newbridge on the Charles, the Eden Alternative, the Leonard Florence Center for Living, and Peter Sanborn Place. Jacquie Carson, the director of Peter Sanborn Place, described for Gawande a conversation she had had with the physician of a ninety-three-year-old woman with Alzheimer’s.
“She’s not safe,” the doctor told her. “She needs to be in a nursing home.”
“Why?” Carson replied. “We have bed pads. We have alarms. We have GPS tracking.” The woman was well cared for. She had friends and familiar surroundings. Carson wanted him just to order some physical therapy.
“She doesn’t need that. She’s not going to remember how to do that,” he said.
“Yes she is!” she insisted.
“She needs to be in the nursing home.”
“ ‘You need to retire,’ I wanted to tell him,” Carson recounted. Instead, she said to the patient, “Let’s just change your doctor, because he’s too old to learn.”Sometime the residents themselves would tell Carson that other residents no longer belonged at Peter Sanborn place.
Arguing with them didn’t work. So Carson was now trying a new tack. “I say, ‘Okay. Let’s go find a place for her to live. But you’re going with me, because you could be this way next year.’ ” So far, that has seemed enough to settle the matter.In the second half of the book, Gawande turns the spotlight on the very end of life, and the hard choices that come when facing the final stages of a terminal disease. The modern medical system is geared towards providing a wide array of options for trying to treat a disease. There is rarely a case so hopeless that something cannot be tried, that might have some small chance of having a miraculous effect. Gawande cites a 1985 essay by the paleontologist and writer Stephen Jay Gould entitled The Median Isn’t the Message. Gould was diagnosed with abdominal mesothelioma, an incurable cancer with a median survival time of eight months after discovery. He was initially devastated, but after taking a closer look at the statistics, he found that there was a long, slender tail of patients who lived much longer than the median. Indeed, Gould himself ended up living twenty more years, and when he did die, it was from an unrelated disease.
“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”Gawande agrees with Gould, but at the same time, he suggests that the attitude that Gould calls “trendy” is not actually so trendy; instead, the modern medical system encourages people to focus only on the long tail, causing them to be unprepared for the far more likely outcome.
The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.Gawande describes a case study of a patient, Sara, who said that she wanted to die peacefully at home. However, she and her family were caught off guard and found themselves pursuing more and more desperate treatments to the bitter end, in part because the system was set up to continually offer them that choice, without laying out an alternative path that might lead them to an ultimately more satisfactory outcome. Gawande says that he was once asked by the sister of a patient with a terminal illness, “Is she dying?” and he found that he did not know how to answer the question; he did not even know, in the context of modern medicine and its amazing ability to prolong life even when hanging by a thread, what the term “dying” even meant.
Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.Susan Block, a palliative care specialist, told Gawande about her experience with her own father. Despite being professionally trained, she found that having an end-of-life discussion with her own father was agonizing. However, it was definitely worth it, because her father totally surprised her by telling her, “Well, if I‘m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.” This was not at all what she had expected him to say, but once she had this information, she was far better equipped to navigate the choices that lay ahead. Tough choices were still painful to make, but they were made much easier because her father had, in effect, already made some of them in advance and she did not have to second-guess herself as she made decisions on his behalf.
Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.The most powerful section of the book, because it is intensely personal, is the concluding narrative in which Gawande details the final years of his own father’s life, and how they navigated the situation as a family. It is a story best read in its entirety and I will not try to summarize it here. Instead, I will just quote the final paragraphs, when Gawande’s family is spreading his father’s ashes in the Ganges River.
When I was a child, the lessons my father taught me had been about perservance: never to accept limitations that stood in my way. As an adult watching him in his final years, I also saw how to come to terms with limits that couldn’t simply be wished away. When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear that there are times when the cost of pushing exceeds its value. Helping my father through the struggle to define that moment was simultaneously among the most painful and most privileged experiences of my life.
Part of the way my father handled the limits he faced was by looking at them without illusion. Though his circumstances sometimes got him down, he never pretended they were better than they were. He always understood that life is short and one’s place in the world is small. But he also saw himself as a link in a chain of history. Floating on that swollen river, I could not help sensing the hands of the many generations connected across time. In bringing us there, my father had helped us see that he was part of a story going back thousands of years—and so were we.
We were lucky to get to hear him tell us his wishes and say his good-byes. In having a chance to do so, he let us know he was at peace. That let us be at peace, too.
After spreading my father’s ashes, we floated silently for a while, letting the current take us. As the sun burned away the mist, it began warming our bones. Then we gave a signal to the boatman, and he picked up his oars. We headed back toward the shore.Gawande is, of course, a physician, and it is not clear to me what he believes about God. He is primarily concerned with what the medical profession can do to improve. For those of us who are Christians, however, I believe that the many questions raised by Gawande’s book should cause us to ask, what are we doing, both as individuals and as a community, to craft a better roadmap for the last years of our lives? The message I have taken away from Gawande’s book is that outsourcing the management of the final stage of our lives to the medical profession is a mistake. Obviously I do not have all the answers, but I do think we should start by having more discussions of these questions within the Christian community. The hope that we have in Christ means that we should not be afraid to confront our mortality, and so we should live and think and talk as people who indeed have no such fear.