Being Mortal

by

Atul Gawande

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Dr. Atul Gawande explains that, as a medical student, he was never really taught to help patients cope with death—only how to save lives. He writes that while medicine allows people to live longer and better, it turns aging and death into medical processes. Gawande aims to explore how the experience of aging and dying has changed, and how it might be improved.

In the first chapter, Gawande highlights two different cases of aging: his wife’s grandmother Alice, and his own paternal grandfather Sitaram. Sitaram lives to 110—at the end of his life, he is cared for by his family even as he insists on still running his farm in India. Alice, by contrast, has lived alone for almost three decades after her husband died of a heart attack when she was 56. Historically, living with family in old age has been more common, but as people live longer, it has created tensions between parents and children over how each can live. As the elderly became more financially independent due to pensions, they found freedom in retirement communities and being able to live away from children. Gawande notes that Alice’s case is a sign of progress, but it does raise the question of what to do when the elderly can no longer live independently: when Alice turns 84, her health and memory begin to deteriorate.

In the second chapter, Gawande explains how modern medicine has allowed people to recover from various illnesses, infections, and injuries that used to be a death sentence. Even incurable cancers are now treatable. But medicine has also changed the way people think about old age, viewing aging as a failure or weakness rather than a normal process. Because aging is an uncomfortable topic, people avoid it, but this has created problems, as well. Most people don’t save enough for retirement even though people are living much longer, and there aren’t enough geriatricians to care for the growing elderly population, even though geriatricians markedly improve people’s quality of life in old age.

Chapter 3 focuses on Felix and Bella Silverstone, an elderly couple living in a retirement home. When they are both in their 80s, Bella’s health deteriorates and she breaks both legs, causing her to be moved to a nursing home unit in their retirement community. But seeing how the staff treats Bella like a rag doll rather than a person as they dress and bathe her, Felix asks to return to their home so they can have more control over their situation. Four days after Bella’s casts come off, she dies, and Felix is heartened by the fact that she got to spend her final days in her own home. Gawande then returns to Alice’s story: as a result of her waning health, she moves to a retirement home and then a nursing home when she falls and breaks her hip. But feeling that she has no control over her life, she chooses not to tell the staff when she starts vomiting blood, and the next day, she passes away.

Chapter 4 follows Lou Sanders and his daughter Shelley. When Lou’s health declines and he can no longer live alone, he moves in with Shelley. But he is frustrated with his lack of control over food, the television, and when he can see friends. Similarly, Shelley feels the burden of having to care for her father on top of caring for a family and having a job, so they start to look for an assisted living facility. Gawande describes the origins of assisted living: Keren Brown Wilson, one of assisted living’s originators, wanted to create a residence in which the elderly could have assistance, but also privacy and autonomy. While initially assisted living was very successful—increasing people’s autonomy without sacrificing their health—over time it has become a stepping stone to nursing homes, rather than an alternative to them. Lou spends a year in assisted living but his health continues to worsen, so Shelley decides to look for a nursing home despite his adamant protests.

Other people have tried different ways to reform assisted living and nursing homes. For example, Bill Thomas introduced plants, animals, and children as a way to get residents more engaged in life and to give them purpose. Other facilities reorganize residences to make them homes with communal spaces so that people can engage with each other. The point is to give people the freedom to choose how to live their lives. Lou moves into the Leonard Florence Center, one of the places that organizes residents into homes—with single rooms—and allows them to determine their schedules. This simple difference makes Lou feel that he still has a place in the world.

In Chapter 6, Gawande returns to the topic of doctors’ failure to understand their terminal patients’ needs. He brings up the example of Sara Monopoli, a 34-year-old patient diagnosed with advanced stage IV lung cancer. Her oncologist Paul Marcoux suggests a variety of chemotherapy options, as Sara doesn’t want to focus on survival statistics (median survival is about a year). Sara undergoes four rounds of chemotherapy, none of which improve her tumors—but the chemo does lead her to have a suppressed immune system. Because of this, she gets pneumonia and her breathing becomes extremely labored. Despite her protests that she does not want to die in the hospital, the constant pursuit of treatment leads her to pass away in the hospital as a result of her pneumonia.

Hospice care focuses on alleviating suffering and helping people take advantage of the time they have left, and it is an alternative to traditional treatments and surgeries. Gawande illustrates how hospice care not only improves people’s well-being, but often it actually helps people live longer than traditional medicine.

In the final two chapters, Gawande highlights the importance of discussing a person’s priorities for the end of their life, as he does with his own father, who is also a surgeon. When his father is in his 70s, doctors discover a tumor in his spinal cord tumor. A surgeon, Edward Benzel, offers him surgery, but he also helps identify Gawande’s father’s priorities. Realizing how important keeping his career is to Gawande’s father, Benzel suggests that he wait on surgery. This prioritizes his well-being over the possibility of longer survival, particularly as he knows that surgery has a risk of making him quadriplegic. Putting the surgery off allows Gawande’s father to continue working for another two and a half years, which was incredibly important to him.

Gawande tries to emulate Benzel’s ability to identify his father’s priorities and give advice according to those priorities. He works with a patient, Jewel Douglass, who has a tumor pressing on her bowels, causing her to vomit everything she eats. He knows that he could suggest a slew of treatments and surgeries, but he acknowledges that the treatments come with complications. In the end, Douglass asks him to go through with the surgery only if it seems relatively safe. When Gawande begins the surgery and sees that it would be risky, he decides instead to alleviate her pain and not risk her health further. Douglass then elects hospice care and spends her final two weeks surrounded by family and friends.

Gawande’s father is now ready for surgery as his condition worsens. Before surgery, he and his father have a conversation about what kind of end-of-life care would be tolerable for him, even though the subject is difficult. Gawande’s father explains that he doesn’t want to stay alive on a ventilator or feeding tube, and he is more afraid of being quadriplegic than dying. This conversation proves critical, as complications arise during his surgery and Gawande uses his father’s guidance to instruct Benzel to continue with the surgery. As a result, his father doesn’t lose any motor function and staves off his tumor’s progress for a time. Eventually, however, Gawande’s father grows worse, and he knows that he doesn’t want chemotherapy. He elects for hospice care and passes away soon after, surrounded by family.

Gawande concludes by reiterating that when it comes to aging, illness, and dying, everyone should understand their hopes, fears, and trade-offs, and every doctor should help patients have these conversations. Though discussing death is difficult, helping people in their final phase of life has been Gawande’s most fulfilling experience.