Being Mortal: Medicine and What Matters in the End

by Atul Gawande

This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.

The discussion became difficult for me or my parents to follow, despite all three of us being doctors.

He was torn between living the best he could with what

had versus sacrificing the life he had left for a murky chance of time later.

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.

“Hospice is about palliative care,” she said, about giving care to help manage these difficulties. She went through the services that Medicare would cover for my father. He’d have a palliative care physician who could help adjust medications and other treatments to minimize his nausea, pain, and other symptoms as much as possible. He’d have regular nursing visits plus emergency nursing support available twenty-four hours a day by phone. He’d have fourteen hours a week of a home health aide, who could help with bathing, getting dressed, cleaning up the house, anything nonmedical. There’d be a social worker and spiritual counselor available. He’d have the medical equipment he needed. And he could “revocate”—drop the hospice services—at any time.

We witnessed for ourselves the consequences of living for the best possible day today instead of sacrificing time now for time later.

At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.

We also recognize the necessity of allowing doses of narcotics and sedatives that reduce pain and discomfort even if they may knowingly speed death. All

Yes

In places that allow physicians to write lethal prescriptions—countries like the Netherlands, Belgium, and Switzerland and states like Oregon, Washington, and Vermont—they can do so only for terminally ill adults who face unbearable suffering, who make repeated requests on separate occasions, who are certified not to be acting out of depression or other mental illness, and who have a second physician confirming they meet the criteria. Nonetheless,

Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.

asked her what her goals were, and she didn’t have any she could see possible. When I asked what her fears for the future were, she named a litany: facing more pain, suffering the humiliation of losing more of her bodily control, being unable to leave the hospital. She choked up as she spoke. She’d been there for days just getting worse, and she feared she didn’t have many more. I asked her if they’d talked to her about hospice. They had, she said, but she didn’t see what it could do to help her. Some in her position, offered “death with dignity,” might have taken it as the only chance for control when no other options seemed apparent. Martin and I persuaded Peg to try hospice. It’d at least let her get home, I said, and might help her more than she knew. I explained how hospice’s aim, at least in theory, was to give people their best possible day, however they might define it under the circumstances. It seemed like it had been a while since she’d had a good day, I said.

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.

He tinkered constantly with his doses, trying to find the combination that would let him feel neither pain nor fogginess—feel normal, like the person he’d been before his body began failing him. But no matter what the drug or dose, normal was out of reach.

As a person’s end draws near, there comes a moment when responsibility shifts to someone else to decide what to do. And we’d mostly prepared for that moment. We’d had the hard conversations. He’d already spelled out how he wanted the end of his story to be written. He wanted no ventilators and no suffering. He wanted to remain home and with the people he loved.

pathway we risked heading down, and that the kind of life intensive care would preserve for him was far from the one he wanted. Endings matter, not just for the person but, perhaps even more, for the ones left behind. She decided to tell them not to intubate him. I called my sister and caught her as she was about to board her train into work. She was not ready for the news, either. “How could it be?” she asked. “Are we certain he can’t return to how he was yesterday?” “It seems unlikely,” I said. In few families does everyone see such situations the same. I arrived the quickest at the idea that my father was coming to the end, and I worried most about the mistake of prolonging his suffering too long. I saw the opportunity for a peaceful end as a blessing. But to my sister, and even more my mother, it didn’t seem certain at all that he was at the end, and the mistake that loomed largest to them was the possibility of failing to preserve his life long enough. We agreed not to let the hospital do anything further to resuscitate him,

But he still wanted to go home. In a hospital built to ensure survival at all costs and unclear how to do otherwise, he understood his choices would never be his own.

you could sleep through it, is that what you’d prefer?” I asked. “Yes.” “You don’t want to be awake, aware of us, with us like this?” my mother asked. He didn’t say anything for a moment. We waited. “I don’t want to experience this,” he said.

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.