Michael's Reviews > Being Mortal: Medicine and What Matters in the End

A clear, uplifting, and eloquent education on the deficiencies of the medical establishment in end-of-life care and promising progress toward improvements. This Boston surgeon has already authored accessible books on the human art behind the science of medicine with his “Complications” and “Better”. He is a master at using stories of his cases to address disparities between our expectations and the reality of medical practice and drawing on diverse research to advocate for needed changes. Here he delves into the tragedy of so many people at the end of their life dying in the depersonalized, institutional conditions of hospitals and nursing homes.

In in his own training he was taught to see death as the enemy to fight at every step with everything in the arsenal of medicine and didn’t conceive any role for doctors in facilitating help with the dying process. He does remember a seminar in which they read Tolstoy’s “The Death of Ivan Ilyich”, which highlighted the benefits the character gained from simple, humane interactions with his servant. But that lesson was soon forgotten. Only when some of his surgical interventions came to a bad end of complications and a miserable death in the ICU did he come to consider changing how he approached his cases. For one man with cancer invading the spinal cord, he successfully removed enough to delay the onset of paralysis, but he never recovered from the procedure. Such failures led the good doctor to rethink is ingrained approaches:

The chances that he would return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something good would result. …
We pay doctors give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise. This certainly is a factor. But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is …
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 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 it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.

In a set of brief chapters, Gawande adroitly covers innovations in making nursing homes more humane, the advent of assisted living solutions, and growth in palliative care and hospice services. Simple approaches like allowing nursing home residents have pets or opportunities to socialize with kids in a nearby afterschool program had surprisingly powerful benefits. The power of assisted living programs to preserve privacy and autonomy while fostering socialization and sense of community is illustrated with exemplary stories. From a low point of just 17% of people dying at home in the 80’s, by 2010 fully 40% were being supported at the end through hospice care, of which half involved a home location. Studies revealed that patients who stopped chemo sooner and entered hospice sooner had less suffering at the end and lived up to 25% longer. The outcome had Zen aspect in that “you live longer only when you stop trying to live longer”. Just family communication about end of life care decisions by palliative care providers had a huge impact on reducing costly ER and ICU utilization.

The lesson the Gawande learned and began applying to his patients (and the situation of his own father) was to take the time to find out what gives the person a sense of meaning and purpose in life and to explore the trade-offs they are willing to make to best fulfill those goals relative to the risks of procedures aimed at giving them a longer life. But the challenge remains in every case to guide his patients on when to stop the pursuit of treatment in favor concentrating on living the best they can with what they have left. The case of a hero of mine, biologist Stephen Jay Gould, facing a fatal lung disease, mesothelioma, is telling. In an essay “The Median Isn’t the Message” he notes how variation around the median survival of 8 months included a long tail of minority cases with longer survival, a situation luck placed him with (he lived 20 years more before succumbing to an associated lung cancer):

”Of course I agree with the preacher of Ecclesiates 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.”
What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and with only the rudiments of a system to prepare patients for the near certainty those tickets will not win. Hope is not a plan, but hope is our plan.

After exploring the insights of social scientists such as Goffman, Maslow, and Dworkin, he arrives at some important concepts that providers and families of the seriously ill should keep foremost in mind:

Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human.
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This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but expand them, in the name of living a worthwhile life.
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Most often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.”
People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.