Medicine and What Matters in the End
by Atul Gawande
NY: Henry Holt/Metropolitan, 2014
I learned about a lot of things in medical school, but mortality wasn’t one of them. ... Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.
So begins Gawande’s latest book, important and well worth reading, as his writing always is, and particularly relevant to individuals in what the French call the “third age” of life (think of the riddle of the sphinx) and those who are or soon will be caring more and more for that generation as time brings about the inevitable.
Every doctor, every nurse, sooner or later must confront death, but Gawande notes that until recently few in modern medicine were given tools to deal with the situation. Instead, American medical training has focuses on testing, recording, gathering facts, prescribing drugs, and offering patients an increasing number of choices among an array of procedures with hoped-for but unclear outcomes. Death was the elephant in the living room, the one everyone knew was there but no one wanted to mention.
Medical costs in the final year of life are astronomical, as everyone knows but equally unfortunate (perhaps worse), Gawande believes, is the harm inflicted when people are “denied ... the basic comforts they most need.” And “basic comforts,” it turns out, are more than food and shelter and safety.
The most frequent complaint Gawande hears from nursing home patients is, “It just isn’t home.” However homelike in appearance (appearances often geared to appeal to residents’ adult children rather than residents themselves), in most facilities designed for care of the frail elderly, residents lack the privacy and autonomy most of us take for granted all our lives.
Gawande traces the history of the “assisted living” movement from its origin in the vision of a West Virginia coal miner’s daughter. When Keren Brown Wilson’s mother, Jessie, needed help with the basic tasks of living, there was nowhere for her to go but a nursing home. The daughter, a college student at the time, never got over her mother’s frequent plea, “Take me home,” and because of those pleas, Keren Wilson developed an interest in issues related to aging and eventually earned a doctorate in gerontology. What her mother had in mind for “home” was not a place designed for her health and safety (placement considerations important to most children of the elderly) but a place where she could be herself again, not a patient, but Jessie the person. Dr. Wilson wrote a paper to outline what such a place might look like.
The key word in her mind was home. Home is the one place where your own priorities hold sway. At home, you decide how you spend your time, how you share your space, and how you manage your possessions. Away from home, you don’t.
For a variety of reasons, Wilson’s original idea became diluted beyond recognition as “assisted living” facilities popped up all over the country, but Gawande visits and describes a few places where privacy and autonomy, key to Wilson’s original vision (rather than regimentation) are the rule.
Paramount at every stage of aging, whether or not it involves terminal illness, is “how to make life worth living when we’re weak and frail and can’t fend for ourselves....” What makes life worth living will vary from one individual to another, and the point of the “hard conversations” with family members and medical staff is to determine, in each case, what makes life worth living to this particular individual. For one man, being able to eat chocolate ice cream and watch sports on television was enough. “My dad,” Gawande tells us, in one of the passages focusing on his own experience with his frail, aging surgeon father, “didn’t think that would be good enough for him at all.”
Not surprisingly, there is a lot in Being Mortal about hospice and palliative care. The idea of offering “concurrent care” actually came from an insurance company. Instead of having to choose between hospice and other treatments, policyholders with less than a one-year life expectancy could continue their regular treatment and receive hospice care. Since they did not have to give up anything, enrollment in hospice jumped from 26 to 70 percent. More surprising were some of the other results:
They visited the emergency room half as often as the control patients did. Their use of hospitals and ICUs dropped by more than two-thirds. Overall costs fell by almost a quarter.
Gawande cites a 2010 study from Massachusetts General in which patients with stage IV lung cancer were randomly assigned to two different groups.
Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist ... The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer.
In other words, not only was it cheaper to add hospice care to other treatments, but terminally ill patients lived longer, had fewer emergency incidents, and their quality of life was higher. Gawande attributes much of the difference to the open conversations that hospice encourages and the focus of its staff on the person and his or her individual values and goals rather than on hope for recovery.
Conversations about end-of-life choices, he admits, are not easy. They take time and may “unleash difficult emotions” for all involved. In the end, however, they can make all the difference. The battle analogy he uses to make his point comes from the 19th century and pulls no punches:
Death is the enemy. But death has superior forces. Eventually, it wins. And in a war that 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 when it can’t, someone who understands that the damage is greatest of all if all you do is battle to the bitter end.
The author of Being Mortal shares with readers not only his medical experience and the fruits of his research into how society deals with aging and dying, but also his own personal story, that of a loving son distressed to see his father losing ground.
My only wish – I will not call it a complaint – is that an index would have been helpful. I highly recommend this book.