A recent poll shows 41% of Americans believe Obama's healthcare plan will create "death panels." But two Newsweek articles this week highlight something that's been ignored amid all the recent hysteria — the actual wishes of the dying.
Jesse Ellison tells a moving story of her grandmother Anne, who died of lung cancer at the age of 91. Anne Ellison had expressed her desire to die "quietly, peacefully, as she went about her day, or, even better, in her sleep" — something many of us might wish for. Instead, she was moved from a hospice to an assisted living facility to an emergency room and back to a hospice, spent several minutes lying outside on a gurney in a snowstorm, and endured chemotherapy, radiation, and a colostomy before she finally died. Jesse Ellison says that all her treatments were described as "palliative," but that they brought her not more meaningful time with her family, but more suffering. She writes,
[T]here was nothing peaceful about her death. She was forced to endure exactly what she had been so afraid of. During respite care, at the assisted-living facility, and especially at the hospital, my grandmother was treated like a problem to be solved, not as an elderly woman who had had enough. Because of the way her health improved, then so quickly declined, and because the system is set up to save people, not let them die, those last few weeks became needlessly tragic. They were also-and this really would have made my grandmother irate-enormously wasteful. Tens of thousands of dollars were spent on care and treatment: the ambulance trips alone averaged $500 apiece; the first visit to hospice cost more than $10,000; and the bill for three days in Lenox Hill came to $36,772.43, not including visits from doctors. All this for a 91-year-old woman with terminal cancer and no wish to hang on.
Evan Thomas highlights this wastefulness in another Newsweek article. Most of the growth in health care spending comes from Medicare, he writes, and nearly a third of that is spent in the last two years of life. For our health care system and our economy to continue functioning, we need to reduce that amount — but not by hauling the elderly up in front of "death panels" or denying them care they need. Thomas quotes Dr. Elliott Fisher, a professor at Dartmouth Medical School, who says, "It's not about rationing care-that's always the bogeyman people use to block reform. The real problem is unnecessary and unwanted care."
Thomas offers some solutions for reducing such care, from reforming the malpractice lawsuit system to paying doctors on salary rather than by procedure. But another important aspect of reform is both very simple and very difficult: understanding and respecting the wishes of the dying. Doing this would require resources — and an attitude — that we don't currently have.
Jesse Ellison's descriptions of her grandmother's arduous shuttling between different facilities and forms of treatment were familiar to me — that's what my grandfather's last months looked like, a little over a year ago. Everyone in my family was enormously grateful to the people who took care of him, all with compassion and sensitivity. But we also didn't really know what to do as his treatments became increasingly draining for him — and as he began to express his desire to stop them. All of our feelings about his death were complicated, and at the time I wished we had someone at the hospital to help us sort through them. Thomas points out that families often have as much influence on end-of-life care as patients do, and a counseling system to help loved ones accept and respect a patient's desires would be invaluable.
Ellison's right that most of the time, a hospital's "job is to keep people alive." But at a certain point that job changes. At that point the dying, their families, and their doctors need help determining what to do next — not to satisfy some outside "panel," but to best honor the way in which patients want their lives to end. Sometimes this help is available in the form of social workers or clergy, but sometimes it's not — and all families deserve to talk to someone whose understanding of the end of life goes beyond putting it off as long as possible. I'm not sure if this would actually save us money, but it would certainly spare us pain.