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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  • karen3

    Boy, if I were going to opine at length about the evils of loss autonomy of older adults, the first thing I would rail against is the ubiquitous and illegal use of anti-psychotics to drug older adults into drooling imbeciles that have difficulty recovering in order to save on the nursing costs of appropriate care. That would be issue number one.

    As trusting a physician with “physician assisted suicide” there are so many doctors who have zero regard to patient decisions I would never entrust the profession with that.

    • Guest

      “Physician assisted suicide” is just a euphemism for state-sanctioned murder. The only person in this world I would trust with having my permission to kill me if he judged that things had got too bad would be my husband of forty years… but if he kills me, it’s murder. Yet a veritable stranger can kill me and that’s okay?

  • http://www.nuehealth.com/index.html sandra miller

    A great article, thanks. When 80% of our lifetime healthcare spending happens in the last few weeks of life, it’s reasonable to question what drives that imbalance.

    • Guest

      …and it’s reasonable to start thinking about killing off the “useless eaters”, on the basis that they cost us too much?

  • http://www.twitter.com/alicearobertson Alice Robertson

    This is just a diatribe from someone who wants to look altruistic and doesn’t realize ideas have consequences. You had so many contrite partisan bombs in here…yet a segment will take it seriously. So you don’t think IPAB’s will have the ability to be death panels (when they get around to getting funded and can exist)? I didn’t agree, but appreciated the honesty of Paul Krugman who was honest enough to share that it will take “death panels” (to save money) and “VAT” (to generate money) to finance these types of programs like Obamacare. I just wonder why there isn’t more honesty from doctors who write in these types of …..look at how much more I care….articles.

  • usvietnamvet

    Our society fears death..fears it to the point that we often extend the process not for the patient but for the family who can’t let go.

    This is why I have very strict instructions in writing as has my husband. The hard part was choosing which of our children would be in charge if one of us is gone. You want someone who will follow your desires.

    Those of you trying to decide what you want toward the end should do research. I’ve been on a ventilator and have decided that I will NEVER go through that if the reason is to extend my “death” rather then giving my body a chance to recover because there’s a good chance I will live with quality.

    Quality of life is a driving force for me. As a person living with chronic pain I have also decided that when my pain gets too bad I can and will end my life (which should be my right but because of laws I will have to
    die alone so that my family won’t have legal problems). This means that I may have to end my life earlier because I must do the deed rather then having help. It’s a shame we don’t have better laws.

    Ahhh, to live in an America in which you can live your life as you wish as long as you don’t infringe on the rights of others.

  • Mark Hilditch

    I live in Washington State and worked hard to defeat the “Death with Dignity” initiative. Most people are far more afraid of pain and suffering than they are of death itself. The solution is not to ask physicians to assist nor is it to “warehouse” the frail elderly in ICUs. The answer is to keep pushing against the dominant values of our culture related to the denial of death and get families to TALK about end-of-life preferences WAY ahead of time. Get your elderly relatives to fill out their Five Wishes, Advance Directives, and Wills. Elderly Americans want to stay in control? The best way to do that is to plan ahead! And then let hospice care help insure that your preferences come to pass.

    • http://euonymous.wordpress.com euonymous

      I agree, Mark. Perhaps that’s one thing that hospitals should not only ask about on admission, but discuss and facilitate for elderly patients who are still in full possession of their faculties.

  • blancheknott

    Unfortunately, Dr. John, your own bias is glaringly apparent from your 3rd paragraph, in which you characterize conservative arguments as “offensive speech”. “Fair-minded people” in the death with dignity movement-they’re probably the same people advocating abortion on demand throughout all 40 weeks of pregnancy. Which ultimately produced a doctor like Kermit Gosnell. You cannot paint all elderly or terminally ill Americans with the same brush to predict what they will want at the end of life. If they have strong religious convictions, those are only apt to get stronger & be a source of consolation towards the end of life. Don’t ignore them. As for trusting the government: until a few months ago, I wouldn’t have believed the IRS targets conservative groups. But the IRS admitted that it does. And the IRS will enforce the PPACA. You call it hyperbole; I call it vigilance.

  • katerinahurd

    Do you think that the autonomy of the individual is the source of quality in his life? Do you believe that paternalistic practice of medicine does not accommodate the autonomous patient? How does a physician deal with a physically or mentally disabled person?