End-of-life care is a subject many physicians would prefer to avoid. For the medical profession, is it that we feel held to such a high standard that the death of a patient represents failure? Or, more crassly, does a patient's passing imply a lost future source of revenue?
"Avoiding those twin traps of overtreatment and therapeutic nihilism."
Recognize this phrase? It's from Hippocratic Oath, the one I took, standing beside my newly assigned cadaver, in my second year of medical school.
"What Broke My Father's Heart," recently in the New York Times Magazine, is an exquisitely painful story of medicine and our Oath gone awry in the United States. I urge you to read it.
End-of-life care is a subject many physicians would prefer to avoid talking about or confronting. I suspect this is related to our American optimism and apparent conviction that death only happens to others.
For the medical profession, is it that we feel held to such a high standard that the death of a patient represents failure? Or is it, as some in the public accusingly point out, more crass than that? Does a patient's passing imply a lost future source of revenue?
The author writes:
"Thanks to advanced medical technologies, elderly people now survive repeated health crises that once killed them, and so the “oldest old” have become the nation’s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast."
I moved to the U.S. after training in South Africa. While repeating my residency training here, I was shocked to be assigned, as an intern on an ICU rotation, to follow and care for intubated frail elderly patients in their 80s and 90s.
I don't recall it ever being spoken, but I think there must have been a tacit understanding between physicians and the public in South Africa that the limited resources of the ICU would be reserved for the younger patients -- men injured in car accidents, middle aged women with strokes, teenagers stabbed in bar fights. This was not racial -- as a medical and surgical house officer in Johannesburg, I had never seen anyone over the age of 70 in the ICU.
Right or wrong, this "agreement" was driven by the fact that ICU beds were scarce, and heroic care for the elderly was neither expected nor provided.
As the U.S. public, our fondness for medical technology advance has created the kinds of ethical dilemmas that kept me and my colleagues on our hospital's Ethics Committee very busy when I was in practice.
This is one of the most telling parts of this sad story:
"Without the device, Dr. Rogan told me later, my father could have died from cardiac arrest during surgery or perhaps within a few months. It was the second time Rogan had seen my father. The first time, about a year before, he recommended the device for the same slow heartbeat. That time, my then-competent and prestroke father expressed extreme reluctance, on the advice of Fales, who considered it overtreatment.
"My father’s medical conservatism, I have since learned, is not unusual. According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get. And although many doctors assume that people want to extend their lives, many do not. In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would “rather die” than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state.
"When Rogan suggested the pacemaker for the second time, my father was too stroke-damaged to discuss, and perhaps even to weigh, his trade¬offs. The decision fell to my mother — anxious to relieve my father’s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father’s life was over in minutes. Dr Fales was notified by fax.
"Fales loved my parents, knew their suffering close at hand, continued to oppose a pacemaker and wasn’t alarmed by death. If he had had the chance to sit down with my parents, he could have explained that the pacemaker’s battery would last 10 years and asked whether my father wanted to live to be 89 in his nearly mute and dependent state. He could have discussed the option of using a temporary external pacemaker that, I later learned, could have seen my dad safely through surgery. But my mother never consulted Fales. And the system would have effectively penalized him if she had. Medicare would have paid him a standard office-visit rate of $54 for what would undoubtedly have been a long meeting — and nothing for phone calls to work out a plan with Rogan and the surgeon."
These words highlight many of the problems seen in our fragmented system of care:
• lack of continuity of information amongst different providers
• lack of a team approach to medical decision-making
• lack of true listening to the patient or family on the part of clinicians
• lack of fully informed consent
• lack of appropriate "reward" for the physicians whose counsel and support have the potential to save our healthcare system millions if not billions of dollars spent on unnecessary (or, in this case, unwanted) treatments
• perverse incentives to reimburse those physicians who provide more care, with more money
Much of this is known and debated in the public forum. This overuse of resources is spoken about in generalities that have obviously failed to hit home. Well-meaning doctors who're in the habit of offering all the technologically available care options while practicing CYA medicine, are continuing to practice as they always have.
The tragic stories like that of daughter, Katy Butler, provide the shocking emotional impact. These stories, while focusing to some extent on money, financing and screwed-up incentives, are really all about immense human pain, suffering and loss of dignity.
Isn't that what we, as doctors, are commanded to relieve?
What then does this all mean for you, a practicing physician, an entrepreneurial doctor, a medical practice business owner?
The creativity of true entrepreneurship is born from passion. Most physicians I communicate with describe their ongoing desire to making a meaningful contribution and a difference, despite their disillusionment with clinical practice.
If this is indeed true, then I challenge those of you touched by this story to awaken your creativity, your curiosity, and your commitment, to respond to this crisis in end-of-life care. You won't have all the answers -- no one does -- but surely we as an intelligent, compassionate, inventive group can come up with something better than this!