Grim said something the other day about how the expression "Live by the sword, die by the sword" struck him as more of a promise than a threat. We have to go somehow, and the ways that are worse than going by the sword are too numerous to count. One of those worse ways surely is death in the ICU after prolonged treatment of a terminal illness.
The New Yorker is running an
article on hospice care, a fine resource that in my experience is always called in too late. A strange rule about hospice care is that a doctor must certify that the patient is not expected to live more than another six months. Until death is at the very door, few patients or family are willing to ask for such a conclusion, and few doctors are eager to give it. To both doctors and patients, it feels like giving up at a point when it's terribly difficult to be sure. Patients report feeling that they've been abandoned to die, in large part because insurance terms force a stark choice between palliative and curative care. Patients must choose between any hope that aggressive treatment might yield a cure, and expert help to make the best of what time is left. It's a rare doctor who can help a patient negotiate those shoals.
In the debate over ObamaCare, we heard statistics about the large percentage of medical costs that occur during the final year of life. The subject is difficult to address, not only because it raises the issue of rationing controlled by strangers, but also because we don't always know that it's the last year of life until death arrives to make the calendar plain. And yet sometimes we know perfectly well, don't we? There are medical conditions in which we're rarely wrong when we guess that the end is near. Even then, though, there's the fear of giving up too soon. So people opt for full-bore "curative" care past the point of diminishing returns. They miss out on palliative care that could have afforded them a better death at home. They run up enormous bills in the process. One insurance company conducted an experiment to see whether, in these cases, they could help both themselves and patients by approaching the likely end in a different way. The company asked the obvious question: Why should curative and palliative care be mutually exclusive?
Aetna . . . knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A [cancer patient] could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
A strange bifurcation has opened up in the medical care we've grown accustomed to in recent decades. Their medical training, the iron discipline of legal liability, and our cultural aversion to acknowledging death hamper today's doctors in guiding patients to the best possible death. In contrast, hospice workers often show remarkable skill at it. How did we decide that doctors and hospice workers should never work together? Why should doctors think of hospice care as "giving up"? When did so many doctors stop thinking of a major part of their function as advising when continued treatment is doing more harm than good?
Unless you've been awfully lucky, you know the problem I'm talking about. The patient and his family don't fully understand what can be cured and what probably can't, or what later terminal symptoms are likely to replace the current ones if the present crisis is survived. Possibly they're in outright denial. The doctor has neither the time nor the inclination to get into messy, emotional discussions with frightened, grieving laymen, or to risk being second-guessed when the end approaches. In the hectic atmosphere, it's hard to remember what the patient is being asked to endure, and for what purpose. A movie scene that struck home to me was in "Critical Care," an extremely dark comedy about hospitals. An elderly patient is being kept alive by horrendous means. When the doctor hears the floor nurse's summary of the treatments that were inflicted during the previous shift, he asks, "Where should I send the bill? To Blue Cross, or Amnesty International?"
Whether delivered in a special ward or, even better, at home, hospice care is a godsend. There probably are people who have had a bad experience with it, but I've never met one. It's a godsend even if it's delayed for no good reason until a few days or weeks before death. For many people, it would have been incomparably more valuable months earlier. The New Yorker article includes some fine descriptions of what hospice care is good at: giving the patient and family a variety of tools to deal with emergencies at home, in order to avoid a trip to the ER that, at best, will result in a brief spate of torture and, at worst, will lead to a mechanized death among strangers, intrusive procedures, and frantic ugliness. Unlike most doctors, hospice workers are a phone call away. After each visit, they will leave behind not only morphine to deal with breakthrough pain but other medications and equipment to deal with emergencies like shortness of breath. They will focus on preserving mental alertness, mobility, comfort, dignity, and peace in the last weeks, days, and hours before death. I recommend the full New Yorker article for its interviews with patients who tried it both ways, and for its insights into how difficult it is to advise the dying. So much depends on our willingness to face facts, talk to each other, and make clear choices.
