Americans too often lose autonomy at the end of their life

Perhaps it’s because I love the practice of medicine so much. Or maybe it’s because doctors (and teachers) have always been my heroes.

I’m trying to sort out why I feel so offended by Paul McHugh’s editorial in the Wall Street Journal. His sensational and paternalistic view of physician-assisted suicide can be summed up in one word—shameful.

It is true, thankfully so, that in the United States offensive speech is protected. And we can agree that right-minded people may see the merits of physician-assisted suicide differently. But Dr. McHugh is a senior physician, an author, a commentator and a Wall Street Journal essayist. This sort of influence brings a great responsibility to be cautious with words, especially when attacking colleagues.

My view of physician-assisted suicide is that we would do better to view it from the lens of the man whose pancreatic tumor is eating through his spine, or the women whose head and neck mass is eroding into her windpipe or the women whose oxygen level is so low that her blood turns acidic. Be mindful also that only a fraction of those suffering in the US get access to skillful palliative care. More frightening even, imagine it is you who are suffering, and you don’t get a choice because of the paternalism of your doctor, who, by the way, isn’t suffering.

All dissent should begin with areas of agreement: Dr. McHugh rightly points out that most patients suffering at the end of life desire pain control—the key word here being control. In fact, many of those who are prescribed lethal doses of drugs do not take them in lethal doses. Why? Because they are comforted from being in control of their destiny. Humans desire autonomy.

There shall be no more agreement.

Dr. McHugh’s likening of the fair-minded people in the death with dignity movement to Schwarzenegger’s terminators drips of hyperbole, and really offensive hyperbole at that. Have we really devolved back to the scare tactics of death panels?

What is so egregious about this sort of hyperbole is that the United States has a humanitarian crisis in end-of-life care. A recent study in JAMA, shows that hospitalizations and ICU stays at the end of life are on the rise. Though hospice referrals have increased, most occur in the hours before death, after a patient has been exposed to aggressive care.

Dr. McHugh says he works with doctors in ICUs and testifies “all of them realize that human life is itself limited in duration and scope.” My experience and the research suggests otherwise. Even now, in 2013, with the percent of enlightened caregivers on the rise, too many elderly, frail, and poorly informed patients whither in the abrasive environment of ICUs. They are there, hooked to tubes and blinking monitors, robbed of their autonomy and dignity, because of people like Dr. McHugh and a former vice-presidential candidate. Hyperbole has contributed to the fear of even having the discussion of different paths for care.

For over ten years, I have sat on the peer review board of our hospital. I can testify that most cases brought for review involve elderly patients with advanced disease. These cases come for review because of errors in management of complex disease states, but the elephant in the room is nearly always, “why was this 89-year-old nursing home resident getting such aggressive care?”

Would she have wanted this? Had anyone asked her what her goals of care were before she got ill? Did anyone (skillfully) present the non-surgical or non-chemotherapy path of care?

Dr. McHugh quotes the Hippocratic oath and Dr. Leon Kass. We learn that “the doctor is the cooperative ally of nature, not its master.” Another way to interrupt that sentence is to consider death as part of nature, and, as fellow humans, it is our job to use skill and compassion to help patients at the time of death. The Institute of Medicine calls on doctors to provide care that is respectful of and responsive to individual patient preferences, needs, and values, and ensure that patient values guide all clinical decisions. Rather than defaulting to aggressive care, isn’t it the job of caregivers to remove fear and ignorance from the decision-making process? This way, we can cooperate with our patients’ wishes, not master them.

Although the Hippocratic oath does indeed say not to administer a lethal dose of a drug, it also calls us to prescribe treatments for the good of our patients and keep them from harm and injustice. Walk through an average ICU in the US and you will be immersed in harm and injustice.

Many medical students take an alternative version of the Hippocratic oath, from Maimonides: “May I never see in the patient anything but a fellow creature in pain.”

And, “Oh, God, Thou has appointed me to watch over the life and death of thy creatures.” If only this happened in real life.

But the real foul in Dr. McHugh’s essay comes when he suggests that those who seek to provide patients with autonomy and dignity at the end of life are interested in killing in the name of technocratic progressivism and population control. This idea strains any credibility. It’s outrageous and an insult to physician colleagues. That doctors do this to each other saddens me.

Optimism is heart healthy, so let us end with a hope that the ignorance and paternalism embodied in Dr. McHugh’s words will focus attention on our crisis in end-of-life care. Across this country, a nation known for freedom, Americans too often lose autonomy at the end of their life. As human beings we desire a sense of control, we are drawn to compassion. If we had these things at the time of death, many fewer people would feel they needed a doctor to help end their life.

John Mandrola is a cardiologist who blogs at Dr John M.

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