Sickness Unto Death

Atul Gawande’s newest book wagers that a new attitude toward mortality can help save American medicine.

On November 1, Brittany Maynard ended her life as she had planned. Ten months earlier, the 29-year-old had been diagnosed with terminal cancer. After undergoing unsuccessful brain surgery, her physicians told her she had stage 4 glioblastoma, a brain cancer that today’s medicine is still incapable of effectively treating. In April her life expectancy was six months. Instead of accepting the chemotherapy and radiation options offered by her physicians, Maynard decided to move to Oregon to take advantage of the state’s Death With Dignity Act that would allow a physician to prescribe her a lethal dosage of sedatives. In October, Maynard partnered with the right-to-die advocacy organization Compassion and Choices to launch a video campaign. In it, she expressed her hope that one day all Americans would have the ability to make the choice she was able to, and die on their own terms. Her video quickly went viral, reaching several million viewers and reinvigorating “death with dignity” conversations across the country.

Thinking about her story, I can’t help but find it sad—not because she chose to die, but because medicine only provided Brittany Maynard with two choices: suffer from extreme, intensive treatments or beat her cancer to the punch. This is the norm for most people with fatal illnesses across the country. The portrait of the dying patient robbed of independence by aggressive medical treatments and unable to enjoy life or see the world outside of the hospital is found everywhere in medicine. Bioethicists constantly point to it in their articles, books, and clinical cases, and I’m sure like me they’ve grown weary of it. Physicians who find themselves terminally ill refuse to set foot in the hospital. A recent study found that 64 percent of physicians surveyed had advanced directives, or instructions for how they wanted to be treated in the event of their incapacitation, as compared with 20 percent of the general population. These directives frequently ruled out the kind of care they provide to their patients. Today’s health care workers are preparing for their own mortality by assuring they will avoid the medicalized deaths that they administer. Yet while health care professionals see medicalized death as the physician’s great crime to the patient, they seem despairing, resigning all attempts to fix it.

Atul Gawande’s newest book, Being Mortal, provides a foundation for solving our current predicament. As I read the early chapters, I recognized Maynard’s story in a different character. An elderly man named Harry R. Truman who lived near Olympia, Washington appears as a figure of the gravity of death at the hands of medicine. In March 1980, he refused to leave his home at the base of Mount St. Helens, despite the threat of a volcanic eruption. The local authorities tried to convince him to leave, but time and time again Truman refused. When the volcano finally erupted Harry Truman and his home were buried underneath the lava.

What did Truman fear? According to Gawande, he was unwilling to give up control of his life. At his age, doctors wanted to put him in a nursing home and with that his freedom would be gone. Schedules would control when he slept, woke up, ate, changed, and bathed. Nursing staff would force him to take medications for whatever frailties it turned out that he had been living with, a list that would surely increase the longer he stayed. He would be a patient for the remainder of his life, trapped in the equivalent of a hospital reserved for the elderly. For Truman, this fate was worse than being buried in lava or volcanic ash.

At the end of Truman’s life, he became a town hero. He “lived life on his own terms in an era when that possibility seemed to have all but disappeared,” Gawande writes. Truman’s community respected his choice to retain his independence, even at the expense of his own safety and security. But Gawande complicates his heroism, posing the question which is the driving force behind his book. Why was the only alternative to Truman’s choice to lose all freedom? Our medical system forces the elderly and the terminally ill to become completely dependent on profit-seeking caregivers and sacrifice most or all claims to quality of life. But surely this cannot be the only other option.

Being Mortal is a book of narratives. At every turn of the page, Gawande is telling the story of another person’s life. Here is Felix Silverstone’s struggle to preserve his disabled wife’s happiness and their life together while doctors tried to push her into a nursing home. There is Alice Hobson, the grandmother of Gawande’s wife, who sinks into depression and loneliness after losing her car, her home, and moving to a retirement facility at the request of her family. Gawande speaks to the experiences of healthcare workers, nursing home staff, his patients, and even shares the story of his father’s battle with cancer and eventual passing. Alice Hobson’s story ends on a particularly disheartening note: After succumbing to the hopelessness of her predicament, after coming to hate the nursing home and the state of her life, she chose to die alone. She vomited blood in her room, but told no one and made no calls. When the aides came to check in on her she had already passed.

Gawande’s book centers human frailty and the disasters like these that leave people helpless. There is no shortage of desperation to be found in medical practice, but Gawande makes us confront the sad truth: we fail the dying. Many of them pass away isolated and filled with regret. I think Gawande is correct to assign fault not only to medicine, but American society at large. Ours is a culture that pushes to see the eldest members of our families safe and secure above all else. We don’t see that the institutions entrusted with protecting them often rob the infirm of a sense of self-directedness. We fail to realize that the elderly value their independence just as highly as we do. We refuse to acknowledge when a family member is near the end of life due to age or disease, focusing only on more treatment. We ask the doctors to give our loved ones more time, as if time was intrinsically valuable, and we never ask ourselves whether the time we secure is meaningful until it’s too late.

Though Gawande brings many issues with our treatment of the end of life to light he also shows that all is not lost. There are innovators attempting to change the field. Bill Thomas enters the book as an emergency physician from upstate New York who becomes the medical director of Chase Memorial Nursing Home and is immediately confronted by the despair of the home’s residents. The elderly at Chase Memorial were heavily medicated and lifeless, and Thomas wanted nothing more than to ensure that up to their final moments his residents had lives they enjoyed, lives worth living. His proposal? Bring in two dogs, four cats, and one hundred parakeets, enough for every room to have a pet.

Bill Thomas’s story was one of many in Being Mortal where someone with fresh ideas came around to break the rules of medicine, hoping to bring life back to the end of life. Each experiment Gawande chooses to tell was different, but the results were always the same: People came alive. In Thomas’s case, residents who the nursing staff believed couldn’t speak started speaking. They began leaving their rooms and interacting with the staff and one another. The animals became a central part of their lives and watching and caring for these pets gave them a purpose. Walking the dog or feeding the birds in the morning was a reason to wake up. Gawande notes that we might consider these small joys but at the end of life it is often the small things that we desire most.

But not all innovation stories end happily. Gawande tells us the story of Keren Brown Wilson, one of the original creators of assisted living facilities. Her first was built in Oregon during the 1980s as an alternative to the nursing home. The core of her idea was similar to Bill Thomas’s: Give back a sense of autonomy and self-directedness to the elderly. These projects were wildly successful, allowing elderly residents to sleep when they wanted, eat what they wanted, refuse to take medications, and even lock their front doors. In the 1990’s Wilson sought investors to help her build more houses and expand her project. However, when business, profit, and the fear of liability gained a heavier presence in the product, Wilson’s vision was altered and her philosophy abandoned. The new assisted living facilities were nursing homes in all but name, and the elderly who entered them suffered the same loss of autonomy. Eventually Wilson stepped down as CEO and the ideas behind assisted living were altogether dropped on the path to bigger profit.

The constraints of giving care under capital notwithstanding, Gawande’s purpose in writing Being Mortal is to point us to crucial and easily missed fact: American medicine is about to be transformed, for better or worse. The country currently has a patchwork quilt of standards of care for the dying. Many of us have only seen one side of the story: patients who are forced to undergo treatment until every bit of quality in their lives have slipped away. This is why we applaud a man like Harry Truman and his decision to die on his own terms: We no longer know another way to die. But Gawande shows us that there now exist a growing number of possible futures for end-of-life and health care. Palliative and hospice care are powerful tools that can improve the lives of the ill and infirm if given the chance. Thomas and Wilson’s visions exist in many forms, and while it is no easy task to find the right home for a loved one, it’s becoming increasingly more possible that the right home exists.

Gawande argues for modern medicine to adopt the well-being-centric approach of palliative and hospice care. A narrative approach asks what can medicine do to aid in achieving other goals, rather than making treatment and survival the sole goal. As Gawande describes it, the point is to find what a patient wants from life, what is important, and what sacrifices are acceptable in pursuit of joy. Having a “hard conversation,” as he calls it, enables a physician to consider the desires of a patient as well as the sacrifices that they will be willing to make. Most importantly, in practice physicians will have a guide to base their actions on when tough choices are called for.

These are not novel thoughts. Bioethicists have copiously discussed the different kinds of doctor-patient relationships, creating a number of different models that more or less stand on a spectrum with total physician paternalism on one side and complete patient autonomy on the other. In the narrative or “interpretive” approach, the goal of any physician is to understand the longer arc of a patient’s story and find the way that medicine best helps that story continue or find closure. The function of medicine should always be to increase the quality of life and promote well-being, without making sacrifices that the patient might find unnecessary or detrimental to the overall narrative arc of life.

Gawande’s book serves as a roadmap for physicians trying to adopt a narrative model of practice. Being Mortal spends a great deal of time recounting the stories of patients’ experiences, and readers will find a great deal of dialogue and conversation throughout the book. But the dialogue has a function other than enlivening his accounts; it provides a script for patients and physicians who are facing the complexities of mortality. Gawande admits that for a long time he didn’t know how to speak to his dying patients. Instead of addressing the possibility of death or trying to start a discussion about what his patients thought was most important, he would turn into “Dr. Informative” and spew medical knowledge. Different treatment options, even experimental ones with no chance of success, had more of a chance of being discussed seriously then preparations for dying.

Being Mortal is the result of time spent working past that blocked conversation. It provides a litany of important questions that Gawande has learned from speaking to and observing palliative care and hospice workers. What is your understanding of your condition? Do you know that you are going to die? With limited time, what’s important to you? What does your best possible day look like? These are questions most doctors and families don’t ask, or perhaps don’t know how to ask. Being Mortal’s biggest accomplishment is that it gives us the words and prompts to help decide what’s important when life is imminently threatened by mortality. Sometimes the patients in Gawande’s book don’t have answers, or family members who don’t want to give up respond with hostility. But once a physician and family understands a patient’s answers to these questions it’s easier to move forward and understand how to best end the narrative of life together.

Because we are in the middle of a fundamental shift it’s hard to tell what the dominant mode of treating the dying will be next. If medicalized death as we know it ends, what will come to replace it? The models presented by hospice care present one possibility, but right-to-die is clearly another. In countries like the Netherlands, ­physician-assisted suicide has already become a major portion of the end-of-life response. And in the U.S. with each case like Brittany Maynard’s that takes the spotlight, the right-to-die movement grows stronger. America could be on its way to one day fulfilling Maynard’s goal, assuring that anyone who fulfills the medical criteria can choose when and where they meet their end.

Gawande spends only a small amount of time addressing the Death With Dignity movement. He makes it clear that he is not an avid supporter, though he acknowledges that there are times when a patient ending their own life might be necessary. His response is not to critique it. He takes it as a chance to again point to the shortcomings of the medical field. It is medicine’s own failing that causes patients to look to it for a good death rather than a good life. Gawande’s point here is key—the Death With Dignity movement is in many ways a product of medicalized death, and the movement owes its strength to modern hospitals’ failure to reform. But there is still time for that reformation to happen, for physicians to start considering the narrative of their patient’s lives and use medicine to help those patients find a fitting ending. It’s not too late to create a health care system that actually helps people more than it hurts when mortality is involved.

On finishing Being Mortal I thought again about Brittany Maynard and the options she said her physicians ­presented—radiation, chemotherapy, or hospice care. Even hospice care sounded like a bleak option: She could have developed morphine-resistant pain while her tumor took away her cognitive abilities and motor functions. As Gawande said, there are cases where ending life is a reasonable decision, and it appears Brittany Maynard’s case is one of them. I’m glad that Maynard did her own research, thought about her options, and made a decision on how she wanted her story to end. But hers is an atypical story. Being Mortal presents the distressingly typical cases where lives end in misery and pain, all because physicians and families are unwilling to have those hard conversations. Maynard’s physicians didn’t ask her what was important or what her goals were, knowing she had limited time. They acted only as Dr. Informative, presented her with some options, and left her alone to choose.

We need physicians who are willing and know how to have hard conversations. What does your best possible day look like? What are you unwilling to sacrifice? The key to dying well for each individual may be in the answers to these questions. When Bill Thomas and Keren Wilson answered those questions, they revolutionized care for the elderly with the homes they built. I believe we’ll find those questions behind Maynard’s decision to die. At its best, the medical world is capable of helping each of us find the unique ending, one that fits our personal narratives. The use of a book like Being Mortal is that it gives medicine the words to use and the questions to ask in pursuit of that ending.