It’s a real-life mystery, far more compelling than most of what you see on television.
Virtually all Americans, asked about facing a terminal illness, say they do not want to die in a hospital intensive care unit. They do not want to be hooked up to feeding tubes and respirators, lapsing in and out of consciousness, unable to say goodbye, in any meaningful way, to their loved ones.
Yet most Americans suffering from cancer, heart disease or organ failure go out exactly that way. Most Americans die in the hospital, not at home, even when there’s little the hospital can do for them.
A vivid description of this awful dilemma is offered by Dr. Atul Gawande in the Aug. 2 New Yorker. Gawande is a rare breed – a prominent physician who writes compelling prose and does not spare himself.
Step-by-step, Gawande illustrates through the experiences of his own patients and colleagues at Brigham and Women’s Hospital in Boston, how people can get to the end of their lives without having considered and talked about what they really want.
Part of it is the understandable trait of humans to deny the inevitability of their own death. Gawande shows how the American medical system, uniquely, tries to preserve life at all cost. We are William Tecumseh Sherman razing Georgia, rather than Robert E. Lee knowing when the battle is lost, and when it’s time to lay down our arms.
He points out, in affecting detail, how most terminally ill patients most want time to spend with their families, but instead feel compelled to seek treatments, any treatment, rather than to focus on what life can be near the end.
Gawande dispels a major misconception concerning hospice, the movement for compassionate end-of-life care that began in Britain in the 1960s. Most physicians, including himself, see hospice primarily as relief of suffering once hope for a cure has disappeared. What hospice actually does is focus on quality of life.
Hospice doctors and nurses still practice medicine. They just do it differently.
And here’s the surprising good news. Since Reagan-era changes to Medicare reimbursement, seniors haven’t been able to choose hospice unless they give up hospital visits. It was thought that it would be too expensive to offer both.
But it’s not true. A 2004 experiment by Aetna allowed patients to choose both hospital and hospice care. The results contradicted expectations.
Two-thirds of patients chose hospice, rather than the one-third now typical. And hospice participants returned to the hospital far less often, even though they could. They lived just as long as those more frequently hospitalized, and, with certain diseases, longer. Moreover, family members were far less likely to suffer from depression after the patient’s death.
Overall costs were more than 25 percent lower – a huge difference, given that nearly one-third of Medicare spending occurs in the last six months of seniors’ lives.
Gawande doesn’t say why Aetna discontinued the experiment. Its results suggest the insurer had found a way to lower costs and increase quality of life – exactly what many hoped the Obama health care reform law would do.
In a followup discussion, Gawande notes that the new law does authorize new pilot programs to test the same proposition as the Aetna study. While new pilots will produce important data, it’s not too soon to revisit end-of-life issues, at least where Medicare is concerned.
The original House bill would have required Medicare to pay for counseling sessions involving family members – exactly the kind of conversations Gawande shows are sorely needed, with most patients and doctors instead pursuing the one-in-a-thousand chance of a cure. This, of course, was what was twisted into the ridiculous charge about “death panels.”
We should bring back counseling, as well as new legislation that would end the ban on dual-hospital-and-hospice treatments. Congress being what it is, it will be several years before a bill is passed, but in the meantime, there can be hearings and public discussion – an appropriate job for the Maine delegation, a rare state where bipartisanship is still practiced..
Some parts of health reform remain problematic – reducing cost shifting, covering the uninsured, realigning provider payments to promote health rather than procedures.
But this one is relatively easy, if profound. Other countries deal with end-of-life issues largely through bureaucratic means – limiting treatments by age and medical condition. Americans resist this. We want choice, but as Gawande shows, we can retain choice through making better choices.
And there’s no better time to start than now.
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