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We've Forgotten How to Die

Medicine can (often) save your life -- but it can't tell you how to let go
Re: We've Forgotten How to Die
Deathbed, by Edvard Munch
Thursday, July 29, 2010
death, hospice, medicine

There's been lots of discussion about Dr. Atul Gawande's remarkable New Yorker essay about the American way of dying. He writes about how our health care system is geared at every level toward extending life, no matter how costly. He's not so much talking about the financial cost, but the cost to the terminally ill patient in quality of life. He says that neither doctors nor patients today have the ability to face the finality of death, and to prepare for it, and that philosophical failure has staggering costs attached to it, writing:

 

In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.
 

This is one of the more amazing essays I've read in a while, and believe me, that's saying something. Take a look at this passage:

Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.

Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage. “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.” In 2008, the national Coping with Cancer project published a study showing that terminally 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. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”


 He goes on to write about how hospice care -- which is about giving up on prolonging the life of a terminally ill patient, and instead focusing on giving them the best quality of life they can have till the end -- has in some cases ended up actually extending life. Gawande: "The lesson seems almost Zen: you live longer only when you stop trying to live longer."

Gawande writes with admirable humility about how doctors fail to deal adequately with their terminal patients, both out of hope that this one patient might be the exception to the odds, and out of ordinary human squeamishness at confronting death. The whole thing reminded me of a point the Orthodox theologian Jean-Claude Larchet makes:  that people in the modern era lack so many resources to deal with the problem of dying that were available to our ancestors.  In Larchet's view, these are some of the things that prevent us from dealing with more philosophical maturity, to say nothing of serenity, when faced with death:

1. An over-valuation of biological life -- that is, the idea that preserving biological life is the utmost value, and a concomitant fear that biological death means the absolute end of human existence. This can cause us to face our illness with great fear, which only undermines our ability to resist it.

2. Psychological health conceived as an enjoyment of well-being in the body. This has to do with a fundamental refusal to conceive of suffering as having any redemptive or positive effect, and with the suppression of pain and elimination of suffering -- as opposed to transforming pain and suffering -- as the highest value of civilization.

3. The fear of everything that can reduce or eliminate enjoyment of well-being in the body.

I should say that the thing that struck me at once about the Gawande essay was how close the case he writes about in the beginning is to the situation my sister Ruthie faces. It's almost eerie: Gawande's patient was a young woman who never smoked, who had the same kind of lung cancer my sister does. One big difference, at least at this point: Ruthie's cancer is responding well to chemotherapy.

Yet the moral questions Gawande's essay raises are very much part of what my sister and the rest of us in our family are facing. As I've written before, Ruthie made a decision at the outset not to know what her chances of survival were, or too many details about her illness. She said she couldn't do anything about it anyway, and all that would do was sap her will to resist. She put herself into the hands of her doctors, and said, "Just tell me what to do."

But absent a cure, that strategy can only work for so long, and anyway, it puts enormous pressure on the doctor. My worry all along in this is that Ruthie will be so focused on beating this cancer (as the woman in the story was) that she will fail to make preparations for what should happen in the event that the tide of the battle turns. I cannot imagine what I would do in a similar situation. I know what I'd hope to do, but I really don't know what I would do. When do you decide enough is enough, and it's time to turn to hospice? (And let me be clear: my sister is not at that point; she's doing pretty well, thank God). How do patients and their families muster the courage to say, "That's it, there's no point in this. Let me enjoy the time I have left"? The tricky thing is, we all hope and pray that this decision won't be put to Ruthie, that she will beat the odds; we all have an emotional investment in her fighting. Besides, you can never say a situation is hopeless. Gawande:

 

There is almost always a long tail of possibility, however thin. 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 have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
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