Thursday, October 14, 2010

Learning How to Die

Atul Gawande has an excellent article in “The New Yorker” titled Letting Go. In it he tries to answer the question “What should medicine do when it can’t save your life? He tells a long and anecdote-driven tale slowly but inexorably leading himself and the reader to an answer. It is a simple but not an easy answer because it places new responsibilities on both doctors and patients, but Gawande makes the compelling case that it is the right answer.

The author presents the typical situation. A patient is told that they have an inoperable cancer. The issue is not of recovery, it is a question of trying to prolonging life by aggressive therapy. Patients respond differently to sickness and treatment. There is always a statistical distribution of outcomes. A few patients will beat the odds and live much longer than the average patient. Those few patients skew the process towards ever more aggressive treatments. Doctors are only human and, as such, can harbor unreasonable expectations in the same way patients do. Gawande points out that the easiest path for the doctor is to continue to prescribe treatment. It is defensible, generally the patient will agree to it, and there is usually a non-zero chance that it will extend life.

The patients are in a difficult position. They are being asked to make life-or-death decisions on short notice. A combination of hope, fear and even guilt will usually drive them chose the path of continued treatment. They might tell themselves that the doctor will let them know when there is nothing left to do. The problem is that in today’s medicine there is always more that can be done.

What Gawande says is missing from this interaction is the attempt to ascertain exactly what it is that the patients want to get out of the remainder of their lives. Often the patients cannot immediately express their desires. As the author states:
“Arriving at an acceptance of one’s own mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”

“People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”
The doctors must take the time to learn what is truly important to their patients, and then must explain to the patients how the various treatments will affect their ability to live the life they would choose to live in the time they have left. This takes time and skill and it cannot be done in a single session. This process of communication seems particularly important in helping the patients make decisions.

The author refers to a study performed by Aetna. Normally hospice care is only provided to patients after they forego all other treatments. Aetna decided they would let a group of patients have hospice care and their normal treatments concurrently. The results would be compared with a control group only following their regular treatment. Both groups had a life expectancy of less than a year. The results were stunning. Patients benefited greatly from having the hospice service available. Within this group, emergency room visits declined by 50% and the use of hospitals and ICUs dropped by two-thirds. Overall costs dropped by almost a quarter. The ultimate conclusion was that the more personal care they received from the hospice workers improved the patient’s health and well being.
“...they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.”
Hospice care is concerned with trying to maintain quality of life at the current moment. That means worrying about pain and discomfort and trying to keep the patient alert and active as long as possible. Its goal is to bring the patient peace while nature takes its course.

Gawande describes another study.
“Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
Needless to say, the author has become a fan of hospice care.

So what is to be done? On the patients’ side, they must begin to consider possible responses to these medical decision points before they become necessary. Family and friends should be aware of their thought and desires relating to end-of-life situations. That will make everyone better prepared when the time comes.

Gawande has this to say to doctors and healthcare professionals.
“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.”

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