Deirdre Cooper and Beverly Nuckols have written a thoughtful response to my article about the denial of life-sustaining treatment to a terminally ill man named Chris Dunn. I am grateful for their engagement in this discussion but also uncomfortable with having to disagree with persons whose beliefs and work I admire.
It is our interpretation of facts—not our moral philosophy—that is at odds in this case. Before going further, it is important to note that none of us is privy to all the facts; there are elements of conjecture and extrapolation in our analyses. However, this case is unusual because there is a video that clarifies the central issue.
Cooper and Nuckols remain silent about my main thesis: that modern bioethics strips from patients their two most fundamental rights of life and liberty. Instead, they advance three collateral criticisms. Below is my response to each.
1) “[Hawley’s] account of the case was based upon incomplete and sometimes factually incorrect reporting.”
When I saw this statement, I expected a list of my alleged misstatements and errors to follow, but their support for this claim never materialized. All but two details described under the heading “A More Complicated Picture” comprise information I either acknowledged in my essay or am happy to acknowledge here. In my research, I encountered the same speculative and erroneous reports that Copper and Nuckols refer to. Like them, I did my best to disregard reports that were inconsistent with court documents and other reputable sources.
Cooper and Nuckols offer additional background information that I did not include in my account, but I excluded these elements only because they have no relevance to my argument. For example, that the parents were divorced and disagreed about their son’s treatment certainly makes the situation more difficult, but this fact is not germane to the clinical/moral question at hand: namely, whether or not this patient should receive continued life-sustaining care. Similarly, the fact that the hospital voluntarily continued care during the ongoing guardianship dispute is commendable, but it is not relevant to my thesis. Finally, that no other facility would accept the patient has no relationship at all to the ethics involved in Chris Dunn’s case.
There are only two factual details on which we disagree, neither of which is a central consideration in my argument. The first has to do with the guardianship dispute. Cooper and Nuckols imply that Methodist Hospital was a disinterested party in this matter. While some of the facts remain shielded from our view, I concede my error in relying on news reports that stated the hospital sought to have its designee appointed as guardian. However, it hardly seems credible to suggest that Methodist Hospital was an impartial bystander. In either case, this issue does not bear on the ethical considerations in this case.
[Author's update: Access to subsequent information confirms I was indeed correct in my understanding that a Methodist Hospital social worker applied to become Chris Dunn's guardian. On page 6 of the initial guardianship application filed by the hospital’s social worker (Justine Moore), she writes: “Applicant [Justine Moore] prays that Applicant be appointed permanent guardian of [Chris Dunn].” This application was filed with the Harris County Probate Court on December 2. It was only after Chris Dunn’s story became news that the hospital’s social worker amended the application on December 11 and withdrew her request to be appointed guardian. Unfortunately, only the amended guardianship application has been widely circulated on the Internet. It is better that all relevant information is made readily available when an issue as important as this is being debated in the public square. In short, I stand by what I wrote in my original January 7 essay as verifiably accurate.]
The other disputed fact is a mere quibble, resulting from Cooper and Nuckols’s rephrasing of my prior statement (though this detail is very important when considering needed reforms). The Texas Advance Directives Act (TADA) authorizes “the patient or person responsible for the health care decisions” to attend the ethics committee meeting, but it does not affirmatively authorize a medical or legal “advocate” to be present, which is the point I was making in my article. Imagine a patient or family member having to convince a committee of the physician’s peers that the doctor’s clinical or ethical judgment is flawed. Viewed through the prism of fairness and procedural due process, that seems a demonstrably unfair practice, especially when a patient’s life is in the balance.
Now, to the crux: Cooper and Nuckols’s factual narrative begins with the statement, “Chris Dunn was admitted to Houston Methodist Hospital on October 12, 2015 . . . unresponsive and on a ventilator.” They go on to describe his incapacitated state and conclude that he was unable to make his own medical decisions. The problem is, their description omits two key facts that contradict this conclusion. First, this patient had periods of wakefulness during which he responded coherently to questions about his medical care. Second, when asked if he wanted to continue living, he used clear and decisive gestures—nodding his head and steepling his hands in a prayerful, pleading appeal—to respond with an unambiguous “yes.”
Both of these facts are verified by the video, which was filmed almost three weeks after the ethics committee voted to withdraw life-sustaining treatment.
I accept that this patient was incapable of handling day-to-day decisions about his care. After all, he was sedated much of the time. However, the video shows him in a wakeful state conveying a coherent and explicit desire to continue living. I submit that his expressed desire should have both moral and legal standing. Cooper and Nuckols never address this subject, which, in my view, is all-important and the only reason we are having this discussion.
Cooper and Nuckols correctly recount all of the symptoms and diagnoses cited in the attending physician’s affidavit, but they overlook two dubious statements on that same page, namely: “[Chris Dunn] is not oriented to person, time, place or situation” (emphasis added), and “He cannot communicate.” Interestingly, this affidavit is dated December 2, the same day the video shows the patient clearly communicating his wishes. I cannot reconcile the video evidence with the physician’s assertions that this patient did not understand his situation and could not communicate.
I have no doubt that everyone involved in this patient’s care, including the ethics committee members, are persons of goodwill who were acting in what they believed to be the best interest of the patient. However, motive and intent are not the issues I am examining. It is the morality of their decision to withdraw life-sustaining care that I am scrutinizing, and I judge it harshly.
2) “Hawley’s argument insinuates that the hospital and the attending physician intended to kill Dunn.”
Respectfully, I ask Cooper and Nuckols to point out where I wrote anything that even hints at an intention to kill. As they correctly acknowledge, knowing that the physician’s actions would cause the patient’s death (my contention) is very different from intending to do so. In fact, I agree wholeheartedly with their very exacting description of what the medical team and ethics committee intended—that is, to end Chris Dunn’s suffering.
Since I readily concede that the physician and committee’s primary intent was not to kill the patient (though it was foreseeable), it also follows that Cooper and Nuckols’s related claim is false: “[Hawley] assumes that the hospital and attending physician are guilty of murderous intentions until proven innocent.” After all, if we agree that it was not their intent to kill, how can they be guilty of murderous intentions?
While it is provocative—I freely admit that I am trying to provoke a discussion—I stand by my contention that this case is an example of “death by committee.” Under Texas law, this patient’s fate came down to a committee decision, and that committee voted to end his life. That, by definition, is death by committee. As novelist Flannery O’Connor once said, “The truth does not change according to our ability to stomach it.”
Cooper and Nuckols claim that Chris Dunn was unable to assess the proportionality of his suffering and, therefore, could not make an appropriate judgment about life-sustaining treatment. But they offer no evidence to support their argument other than an unsubstantiated assertion in the physician’s affidavit. On the other hand, the video offers convincing evidence that contradicts their claim. At that crucial moment in his life, who was better able than the patient to judge his suffering and make a valid choice?
Secular bioethicists casually reject the deeply spiritual and redemptive aspects of suffering in the final days of life. This patient could have chosen to forgo life-sustaining care, and, in light of his suffering and imminent death, that would have been an acceptable moral choice. Instead, he chose to continue living, and an entire institution rose up against him. I cannot fathom what moral imperative compelled them to override his wishes.
As author Wesley J. Smith wrote, “Once avoiding suffering becomes the primary purpose of society, it too easily mutates into license for eliminating the sufferer.”
3) “Hawley fails to account for important implications of the conscience rights of doctors.”
We agree that there is no natural law or constitutional right to endless treatment. We also agree that physicians’ conscience rights are endangered and deserve better protections. If I “failed to account” for physicians’ conscience rights in this case, it is because I found no evidence that conscience had anything to do with the physician’s recommendation to withdraw treatment. There is no such evidence in his affidavit, none in the hospital’s court pleadings, none in the ethics committee’s letter to the family, and none in any statement by hospital spokespersons. Instead, hospital documents explicitly appealed to the patient’s “dignity” and “best interests” as reasons for deciding to withdraw life-sustaining treatment.
I am not suggesting there was no tug of conscience that influenced the physician or committee members in their deliberations. Rather, I am saying there was no evidence or claim of such and, therefore, no grounds for addressing the issue in my essay.
One of the most difficult, and often agonizing, decisions a physician faces is when to recommend withdrawing life-sustaining care. It is made more difficult when, as in this situation, family members disagree about whether to continue treatment. I am sympathetic to Cooper's and Nuckols’s appeal for giving the benefit of the doubt to physicians in these situations, at least as it relates to motive and intent. But we also know which road is paved with good intentions; it is simply not sufficient to raise our glasses in a toast to tolerance.
In my experience, physicians approach end-of-life care with deliberateness and a desire to do good. Sometimes, it is the latter element—the desire to do good—that paradoxically leads to immoral decisions, as I believe this case illustrates.
There is no law that can legitimize taking a life too soon. As Pope Saint John Paul II noted in Evangelium Vitae, a “culture of death” has laid siege to the modern world. We are called to be vigilant.
Philip Hawley, Jr, MD, is a hospice physician and former Assistant Professor of Clinical Pediatrics at University of Southern California Keck School of Medicine. His novel, STIGMA, was published by HarperCollins.