Thursday, April 2, 2015

The way we provide care near the end of life requires resuscitation

During one of the plenary sessions at the Lown Institute's Road to Right Care conference in March, a speaker recounted how overdiagnosis and overtreatment ruined her father's last year of life. Diagnosed with symptomatic multi-vessel coronary artery disease but otherwise in good health and independent at age 85, her father underwent successful coronary artery bypass surgery. His postoperative course was happily uneventful, except for a single stool sample that was positive for blood.

Why her father's stool was tested at all was unclear, since his blood counts were normal during his hospitalization. But his heart surgeon nonetheless strongly recommended that he see a gastroenterologist and undergo a colonoscopy. She tried to dissuade her father from doing this, since at his age even an advanced colorectal cancer would be unlikely to progress enough to cause symptoms before he died a natural death, most likely of heart disease. But her father was accustomed to following doctors' orders, so he dutifully underwent the colonoscopy, which showed a single precancerous lesion.

That should have been the end of the story, but since the gastroenterologist was unable to completely remove the lesion, he recommended consulting a surgeon to operate and take out the entire affected section of large intestine. Her father was barely four weeks out from heart surgery, and she again advised him to disregard this spectacularly ill-advised plan. But he wanted to get everything taken care of, to get this all behind him, so he consented to going under the knife again. This time, the postoperative course did not go well. He developed profuse and unremitting diarrhea, most likely from an antibiotic given prior to the surgery. His doctor pronounced the surgery a success - the cancer was cut out, after all - and expressed little interest in dealing with diarrhea. Her father was then transferred to a nursing home, where his diarrhea continued to resist all treatment, and where he died, miserable beyond all imagining, 6 months later.

Conference organizer and Lown Institute senior vice president Shannon Brownlee told another sad end-of-life story about her own father in a book review in the current issue of Washington Monthly. The article's subtitle about says it all: "How Medicare and other federal subsidies rope the elderly into painful, futile, and costly end-of-life care." Despite her father's expressed wish to never go to "the big hospital in Portland" again, he not only ended up there anyway, but underwent a totally unnecessary nuclear stress test and was hooked up to intravenous nutrition before his hospitalist could be persuaded to call in the palliative care team. Brownlee minces no words in describing the deficiences of what passes for end-of-life care in America:

When a frail, elderly person gets sick, takes a fall, or has trouble breathing, it’s as if they have stepped onto a slippery chute leading straight into the hospital, no matter how fervently they and their families might wish to avoid invasive treatment as they age and approach death. That’s because hospital services are what our medical industrial complex has been built to offer, and delivering invasive end-of-life care is the job for which we have trained our doctors and nurses. ... What we don’t do is train clinicians to talk to patients, and what we don’t have is the community-based infrastructure for delivering “high touch” care to people where they live.

I've written before about my belief that the future of medicine is low-tech and high-touch, and I agree with Brownlee that changing Medicare regulations that value ineffective "technology-rich, hospital-centric" interventions rather than house calls and social services to help elderly persons age in place are a necessary first step in resuscitating the way we provide care near the end of life. It's equally critical that we change the mindsets of physicians who see their roles as sustaining life at all costs ("doing everything," in classic medical parlance) even when they are only prolonging death. Internal medicine resident Aaron Stupple recently made a highly sensible proposal in an editorial in BMJ: pair advanced cardiovascular life support (ACLS) training with communication training about palliative care:

Coupling ACLS with communication training has several advantages. Firstly, it legitimizes the skill set as an important and valid component of today’s medical practice. ... Secondly, affixing communication training to mandatory ACLS training binds this material to an established curriculum with a good track record of reliability and measurability. ... Thirdly, all clinical disciplines receive ACLS training, so it could be used to teach a common message and an essential skill set.

Alas, Dr. Stupple's proposal makes so much sense that I fear it may be ignored. How long have we been trying to change the health care system to protect older patients from harmful interventions near the end of life? I remember reading the late surgeon Sherwin Nuland's How We Die in college and being shocked that most of us will die in hospitals, receiving "heroic" interventions that we don't want and won't do us a bit of good anyway. That was more than twenty years ago, and very little has changed. Let's spread the word about the Right Care Movement and dedicate ourselves to making sure I won't be able to write that again twenty years from now.

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