Wednesday, April 29, 2015

Early Indications April 2015 Review Essay: Being Mortal by Atul Gawande

Let me begin by dispensing with any pretext of objectivity: I think Atul Gawande, a surgeon at a Harvard teaching hospital who writes for The New Yorker, is a national treasure. Complications may be the best first book of our generation; Better is brilliant. We have personal parallels: both of us grew up in the midwest and each named a son for the greatest physician-novelist of the 20th century. He teaches and practices at the hospital where my twins were born back in my Boston days.

Being Mortal is a sobering book. I had to read it in small doses in part to savor its richness but in larger measure to cope with the existential finality it addresses so beautifully and concretely. To the Amazon reviewers complaining that it’s based on anecdotes, let me say simply, they’re not anecdotes, they’re parables. There’s a difference. Those parables made me face my own life’s end in ways nothing else ever has.

Given that the scope of the book is broad and nuanced, I have nothing to gain by attempting to summarize it. Instead, I want to look closely at one piece of his wisdom, that regarding the Hard Conversations. Physicians aren’t trained, he states, to guide patients into death; dying is taken not as natural but as a failure. Given both a cultural reticence to see death as part of life and the readily litigious context of modern U.S. medicine, doctors tend to reach deep into the armamentum of ventilators, central lines, kilobuck antibiotics, dialysis, and other tools near the end of life. Thus the family often can say “the doctor did everything she could,” rather than “Dad went out peacefully, surrounded by his loved ones.”

Gawande gives a great example of the alternative by recounting the story of his father’s end of life passage. Based on a conversation with a bioethicist who had just watched her own father die, Gawande asks his father frank questions about tradeoffs, about limits, about fears. One person might want to get to a family milestone (a grandchild’s wedding, say) and will tolerate high levels of pain in that pursuit; another can bear roaring tinnitus or deafness but is terrified of the implications of an ostomy bag; a third wants to be remembered as cogent rather than as a narcotized, slurring shell of her former self.

The point here is an important one: medical technology has cured old ways of dying but located more deaths in high-tech hospital scenarios. Hospitals employ doctors and technicians who are expert in life-extending treatments more than in guiding the hard conversations. Duration is taken as the relevant yardstick by default; quality takes time and skill to be assessed as a different way to judge outcomes. In one case, Gawande pins down one of his patients’ oncologists who admits that the best-case scenario after a brutal chemotherapy regime is measured in months: the same prospect as with palliative care, and not the years the family and patient were hopefully assuming was the case. The path toward one’s demise is too often governed by what drugs and machines can do rather than what the patient and the family want.

This paradox reminds me of another Boston conversation, this one originating at MIT rather than at Harvard. The psychologist Sherry Turkle’s most recent book, Alone Together, asserts that modern communications technologies have done their job too well: millennials and also many older than they have come to expect human gratification from a tweet, a like, a text, often more than from real people in real proximity. The absence of these digital stimuli — quiet — is painful and to be avoided, she finds; people have lost the ability to be alone with their thoughts. Further, Facebook profiles, Twitter feeds, Pinterest boards, Instagram portfolios, and the other billboards we erect are carefully curated, to use the modern term of art. Thus we can control the self the world sees and interacts with, making the comparatively naked conventional social self more vulnerable and less practiced in the “messy bits” of human interaction, as she calls them.

In both of these scenarios, modern technologies — ventilators and pharmaceuticals in the former case, smartphones in the latter — have become so powerful that they rather than their users shape the tenor and often content of the debate: rather than ask “what do we want?” and use the technologies to get there, we take the limits of the technology as our boundaries and push up against that instead. In both of these instances, the problem is that modern medicines, computing, and sensors exceed human scale: no human can last long on incredibly potent modern chemotherapy poisons, nor can a person be “friends” with 5,000 people 24 hours a day.

What then are the resources for the conversations we should be having? The professor in me wants to say, “the great intellectual traditions.” Indeed, Gawande cites Tolstoy on p. 1 and Plato much later. The problem is that in the U.S. and elsewhere, college as a time for introducing and possibly pondering the big questions is out of fashion right now. In public universities especially, other agendas are in play.

In Florida, governor Rick Scott tried to make tuition for literature, history, and philosophy majors more expensive than engineering or biotechnology, notwithstanding the cost differences in the respective professoriates and infrastructure. Florida is not alone: here at Penn State, a committee was charged with updating the general education curriculum (that includes the essential ideas everyone should encounter, regardless of major) and the task is turning out to be more difficult than expected: the deadline has been extended since the idea was proposed five years ago. To assess whether a Penn State education prepares people to ask “what is a good society?” or “what is a good way to live one’s life?” you can see the committee’s report here. The principles guiding the effort have evolved and can be seen here.

Though I doubt he realizes it, Gov. Scott embodies the paradox. America’s society and economy value the contributions of engineers and programmers more than marketing assistants, retail managers, school teachers, or social service providers  — the landing spots for humanities and social science undergrads. Those makers of machines and software have done amazing things, but the state of the academic humanities does little to inspire confidence that college courses in English or philosophy will teach young adults how to form healthy personal selves and relationships in a digital social context (can Aristotle help cure Facebook envy?), and to help their elders die well. Like it or not, Gawande’s Tolstoy is more than ever an intellectual luxury good rather than the staple of a balanced diet. Thus college and the wisdom of the past are less of a resource than some of us might hope.

What Gawande calls on us to do — beginning with doctors and patients, then patients and families — is the hardest thing: to listen, including to our deepest selves, and to talk honestly. What do we value? What makes us frightened? How do we reconcile ourselves to family differences and breakages in our final days? To watch mom or granddad die, and to help listen to what they really want, is both terrifically hard and a great gift. That Gawande has jump-started that conversation not for a handful but for thousands of people makes him the closest thing to a secular saint I have ever witnessed.