If you haven’t read Atul Gawande’s new essay in the New Yorker on end-of-life care in America, go for it. Gawande talks about modern medicine’s ability to put off death at the expense of quality of life for both the patients and their families:
Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.
But he highlights a few studies showing that those terminally ill patients who choose to stop earlier live better, healthier, and happier than those who cling to aggressive treatments to the end. The different paths all seem to trace to a simple discussion—or the absense of one—between the doctor, the patient, and the family on the patient’s options and wishes for end-of-life care. In one study, two-thirds of terminal cancer patients reported never having had such a discussion, even though on average they were four months from death. The other one-third who did have the discussion:
were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.
Or to put it the other way round:
[T]erminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.
The simple discussion, well before the onset of serious disease, made people far more likely to enroll in hospice care and/or forego aggressive treatments in their last days. Gawande highlights the extraordinary story of La Crosse, Wisconsin, where twenty years ago it became routine for anyone admitted to a town hospital, nursing home, or assisted-living facility to fill out a four-question survey on their end-of-life wishes. Due to this simple innovation, in their last six months of life the town’s elderly now spend half as many days in the hospital as the national average. The town’s end-of-life costs are half the national average, and life expectancy outpaces the national mean by one year.
Wait, I’m remembering something about these nefarious end-of-life conversations from the health care reform debate last year. What was it…. Oh yes:
The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.
That’s about as political as Gawande gets in his essay, and it’s only a parenthetical aside at that. But in a critique of Gawande’s essay over at National Review, Avik Roy doesn’t like it:
One of the great slanders of the last year was that conservative opposition to Obamacare’s end-of-life provisions was demagogic and dishonest. […]
Amazingly enough, there are ways to improve the quality of end-of-life care in America that don’t involve a government program. […]
[S]uch improvements come not from Olympian government officials, throwing lengthy pronouncements down from D.C. office buildings, but from the accumulation of thousands of small innovations by individual doctors, nurses, and administrators.
There are legislative reforms that can help address these problems. But they involve reducing, not expanding, government control of the health-care system. They involve letting patients decide for themselves, with the aid of their doctors and their families, how best to negotiate their last days on earth. If a free country can’t be about that, it can’t be about much.
We’ll forgive the literal incoherence of that last line. And I do appreciate Roy’s manic flourish about Olympian government officials (??) throwing pronouncements down from office buildings; but as Gawande said, all the health care provision did was give the end-of-life conversation its own Medicare code so doctors could bill for it separately. And the entire point of Gawande’s essay is that it’s best for patients to "decide for themselves, with the aid of their doctors and their families, how best to negotiate their last days on earth." There’s no disagreement here. But that doesn’t stop Roy. He sets up a straw man—an Olympian one, if I may—whereby the "state-run system" envisioned by Obamacare won’t allow Americans to decide these things for themselves. It’s nonsense.
Government intrusion in end-of-life decisions. Appalling isn’t it? Kind of like when the magazine in which Avik Roy is published, National Review, editorialized in 2005 in favor of a Republican Congressional subpoena aimed at forestalling the removal of Terri Schiavo’s feeding tube, against the adamant wishes of her husband.
Avik Roy does manage to eke out one good question, in a moment when the fog of hyperbole and partisanship which otherwise engulfs his reason seems to lift:
Why do we need a government program to pay doctors to have thoughtful conversations about their patients’ eschatological desires — something they should be doing already, and that doesn’t cost a dime?
Now this is a challenge not to Gawande, nor to government officials, Olympian or otherwise, but to physicians. As the experience of the cancer patients above shows, doctors are NOT having these conversations with anywhere near the frequency they should be. I do agree with Roy that we shouldn’t have to financially incentivize such a crucial and consequential service; one that leads to far more humane and successful outcomes for patients and their families. The price of an office visit should suffice. But I highly doubt that doctors who regularly deal with the terminally ill are eschewing these conversations because they’ve deemed it not worth their while financially.
So why then aren’t more doctors doing it on their own? Despite Roy’s libel that Dr. Gawande doesn’t consider the question, Gawande has an extended elegant passage where he indeed does consider it:
[T]he issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.
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 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 knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
More often, these days, medicine seems to supply neither Custers nor Lees. We [doctors] are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. 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 to escape a warehoused oblivion that few really want.
The best poem about death is by Philip Larkin. It’s called Aubade and in it, he finds himself awakened at 4am, horrified and fearful at "Unresting death, a whole day nearer now,/Making all thought impossible but how/And where and when I shall myself die."
This is a special way of being afraid
No trick dispels. Religion used to try,
That vast moth-eaten musical brocade
Created to pretend we never die,
And specious stuff that says No rational being
Can fear a thing it will not feel, not seeing
That this is what we fear – no sight, no sound,
No touch or taste or smell, nothing to think with,
Nothing to love or link with,
The anaesthetic from which none come round.
And so it stays just on the edge of vision,
A small unfocused blur, a standing chill
That slows each impulse down to indecision
Most things may never happen: this one will,
And realisation of it rages out
In furnace fear when we are caught without
People or drink. Courage is no good:
It means not scaring others. Being brave
Lets no one off the grave.
Death is no different whined at than withstood.
You can read the whole poem here. I was reminded of that last line, "Death is no different whined at than withstood", by this new piece in Vanity Fair by Christopher Hitchens, on his own diagnosis with terminal cancer and his ongoing chemo treatments. Hitch declares, "In whatever kind of a “race” life may be, I have very abruptly become a finalist."
This is a depressing midweek post. To end slightly better: A good companion poem to Larkin’s is Walt Whitman’s This Compost, in which he too is startled and depressed by a sad thought:
O how can it be that the ground itself does not sicken?
How can you be alive you growths of spring?
How can you furnish health you blood of herbs, roots, orchards, grain?
Are they not continually putting distemper’d corpses within you?
Is not every continent work’d over and over with sour dead?
But then he starts cheering up some, and his old ecstatic voice builds, when he realizes that nature uses our "distemper’d corpses" as vital compost to create new life, and it leaves no trace of the disease and sickness of our "sour dead." By the end he is not depressed at all, but awed:
Now I am terrified at the Earth, it is that calm and patient,
It grows such sweet things out of such corruptions,
It turns harmless and stainless on its axis, with such endless
successions of diseas’d corpses,
It distills such exquisite winds out of such infused fetor,
It renews with such unwitting looks its prodigal, annual, sumptuous crops,
It gives such divine materials to men, and accepts such leavings
from them at last.