Take fear and ignorance out of end-of-life decisions — A rebuttal to Dr Paul McHugh’s WSJ editorial

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 Dr. Paul McHugh’s editorial in the Wall Street Journal last weekend. 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.

JMM

P.S. And as a matter of dissent to my favorite newspaper: I understand the business model, but isn’t journalism, even opinion journalism, supposed to serve the greater good? Publish Dr. McHugh if you must, but also publish the opposing view beside it. Your country is in the midst of a crisis in end of life care, and people like Dr. McHugh are making it worse.

13 comments

  1. Well spoken John!

    By the way – I went to the link you provide above in an attempt to see the original article by Dr. McHugh – but was unable to get the article because I do not subscribe to the Wall Street Journal (perhaps I did something wrong …. – but I didn’t see how to access the original article by Dr. McHugh … ).

    The link that Dr. McHugh should read (in my opinion) – is to the web site of Dr. Monica Williams-Murphy – an emergency physician who has developed an excellent blog and has written a SUPERB book emphasizing the concepts you describe that it is “OK to die”.

    Patients should have autonomy in deciding about their care. There is no longer any place for paternalism in medicine (in my opinion).

    1. Thanks Ken. I will check out the blog of Dr. Monica Williams-Murphy. Sorry about the link. I think the WSJ is indeed a subscription service.

  2. Thank you for highlighting Dr. McHugh’s editorial–I had not seen it and your post sent me scurrying to find it.

    I find that I agree with Dr. McHugh 100%; your blog post, not so much.

    Physicians must have a clear bias for life, and physician-assisted suicide should remain the taboo that it traditionally has been. Physician-assisted suicide is a cop-out, the lazy doctor’s approach to a difficult problem. In reality, it is the companion to the poor decisions that place your proverbial nursing-home patients in the ICU in the first place. Doctors need to “man-up” and make courageous decisions and defend them, fearing not the label of “paternalism” , nor eschewing the need for frank conversations with patient and family. “Skilled palliative care” need not be as rare as Dr. Mandrola implies–indeed I have found it pretty common even among the dying in rural South Texas where I’ve been for most of my 40 years in practice.

    The anecdotal examples of severe pain do exist–we have all seen them–but they are indeed outliers, and we should not be stampeded by a horrible outlier into making poor policy and practice decisions. I’ve actually had only one patient in my career who aggressively wanted to die–and he wasn’t even terminally ill. He ultimately left the hospital and had several more pain-free years of life.

    Finallly, I do not believe that the McHugh Editorial is either hate speech or “shameful”; indeed it is mainstream. “People like Dr. McHugh” are not a problem for medicine, they are strong towers of civilized society. Nor should the WSJ be required to print matching rebuttal editorials to this or any other position. More conversation and honest discussion is almost always in order, and Dr. Mandrola’s excellent blog is a good place to always find this.

    Therefore choose life, and leave euthanasia in the veterinary clinics.

    1. Thanks for your thoughtful and spirited comment. And of course, thanks for calling my blog excellent. To disagree respectfully is normal.

      Two points of clarification: One is that I purposefully left out my position on physician-assisted suicide. I think reasonable people can disagree. All I ask is that we do as Maimonides suggests: “May I never see in the patient anything but a fellow creature in pain.”

      Physician-assisted suicide should not be equated with euthanasia.

  3. Well said. I wouldn’t have been so polite to “Dr.” McHugh had I read that WSJ article. Hyperbole and extreme language have no place in end-of-life discussions.

  4. Thank you for writing this. This is a well thought out response to what is not such a well thought out argument to denigrate doctors who are actually listening to their patients.

    To me it’s no surprise that something this is published in the WSJ. Medicine for revenue through intervention is the business model for doctors today. So no surprise that anyone who tries to change it is going to be attacked viciously. Because if it changes McHugh and other like him will have to actually learn to listen to patients and learn to be real doctors rather than iDoctors who just stick tubes and monitors into people.

    1. Thanks for commenting. It’s a complicated issue, but I think the fee-for-service model is only one (of many) factors that complicate end-of-life decisions. For me, a non-expert on the matter, what strikes me as a larger barrier is both patient and doctor reluctance to confront the issue of death. I frequently come across patients who have been sick for years and are close to death, and yet, have no sense of their prognosis.

      My two cents, my purpose in writing about this tough issue, is to focus attention on the need for better conversations between doctor and patient.

      Sadly, these tough conversations, which are necessary for good decision quality, are poorly compensated, time-consuming and emotionally charged. The current milieu of US healthcare favors doing, not necessarily doing what the patient wants.

  5. As an oncologist and hospice director, I am not a supporter of physician-assisted-suicide. However, as a physician I am offended by Dr. McHugh’s piece. This is a highly charged subject with compassionate people on both sides trying to find balance between the issues of patient autonomy and the doctors’s role in a complex society. It requires calm conversation, which is after all one of the roles of physicians in society. For my part I am concerned about the potential damage to the delicate and challenged physician-patient relationship, where we already suffer from confusion regarding goals and trust. Dr. McHugh certainly does not help professional caregivers on either side of the conversation by injecting references to killing machines. The lack of compassion in his argument, just polarizes the issue. Reasonable people will disagree, but let us at least start with the base that we will be reasonable.
    jcs

  6. Well spoken John!

    As a Licensed Clinical Social Worker and therapist, all too often I find myself discussing (and advocating) the end of life choices with clients and their family. The right of self-determination is paramount in the mental health field; it should also be in the medical field. I find it disappointing when physicians do not offer the choice of allowing nature to take its course in addition to with aggressive treatment. It is offensive anyone would equate adequate pain control with euthanasia. Education is the key to over-coming this paternalistic mind-set.

    A very thoughtful article. Thanks!

  7. My 98 year old M-I-L died two weeks ago. She had been in pain for several years due to arthritis. Then she lost the ability to swallow. After 3 days in the hospital, doing swallowing studies, she announced she was done. She went home, refused fluids, called in hospice and died two days later. Her friends, kids, grandkids, and great grandkids came by to see her and say good bye. No one pretended she would get better. She was clear about her wishes and they were honored. Would feeding tubes have been better? What IS is about this culture that wants to pretend we don’t die? We do die, and sometimes it’s not the worst thing that could happen.

Comments are closed.