The Culture of Death — Looking Back at Terri Schiavo

Public controversies tend to dissipate over time, and front-page news stories have a relatively brief shelf life. Given the pace of contemporary life, events come and go with a mind-numbing rapidity, and today’s front-page news may be quickly forgotten.

Cultural forgetfulness comes with considerable risk — especially when issues of grave moral importance are concerned. Terri Schiavo died just a few weeks ago and her death, along with the grave moral issues involved, has been largely forgotten.

Thankfully, this is not the case in all quarters. The dominant media culture has put its final stamp on the entire Schiavo affair, suggesting that all sides had “learned” from the controversy and casting Terri Schiavo’s situation in largely political terms. The cultural elite, increasingly comfortable with the idea of death on demand, largely celebrates the outcome of the controversy — Terri Schiavo’s death — as the triumph of enlightened legal process over backward moral concerns, largely rooted in “religious values.”

Within the medical community, Terri Schiavo’s death, brought about by the court-ordered removal of her feeding tube, becomes a platform for urging all patients to adopt “living wills” or “advance directives,” supposedly in order to avoid putting a family in such an excruciating situation.

Paul McHugh finds all this to be quite unsatisfactory. University Distinguished Service Professor of Psychiatry at Johns Hopkins University, McHugh revisits Terri Schiavo’s case and sees even deeper dangers. In “Annihilating Terri Schiavo,” published in the June 2005 issue of Commentary, McHugh argues that public attention was largely diverted from the opinions, experience, and judgment of doctors and nurses “who customarily provide care to patients like Terri Schiavo.” Accordingly, “few people appear to have grasped that the way she died was most unusual. That, instead, it has been widely understood to be not only a proper but also a perfectly commonsensical way to die, a way approved of by most doctors and nurses, can only be explained by a deep change that has taken place over the last decades in our thinking about how to care for the helpless and disabled among us.”

McHugh writes as both a medical doctor and an academic. In his article, he retraces the most important developments related to Terri Schiavo’s condition, beginning with her cardiac arrest in 1990. He acknowledges that this medical emergency caused Terri to emerge from a coma “into an impaired state of consciousness.” As Dr. McHugh reminds us, Terri Schiavo “could swallow, breath, sleep, and awaken without assistance, and could react to sudden sounds with a glance, or to pain by grimacing or groaning. But she was apathetic to inner needs and external events. She was mute, mostly immobile, incontinent, psychologically blank.”

The precise nature of Terri Schiavo’s mental condition has been a matter of ongoing controversy. Based on his clinical experience, Dr. McHugh appears to accept the diagnosis that Terri Schiavo was properly described as being in a “persistent vegetative state” [PVS]. As he explains, “This diagnostic category encompasses individuals with cerebral diseases of various kinds who, though only dimly wakeful, retain the life-sustaining functions of respiration, blood circulation, and metabolic integrity.”

McHugh also explains that the metaphor of vegetation (contrasted with animation) is awkward at best. He recalls teasing the “admirable clinician” who invented the term by stating that “I had seen many patients but few carrots sleeping, waking, grunting, or flinching from pain.” The term “vegetative” can mislead, having “the unfortunate effect of suggesting that there is something less worthy about those in this condition.”

Next, Dr. McHugh establishes a very important matter of medical fact. A persistent vegetative state [PVS] “is not death hidden by machinery,” he insists. “It is human life under altered neurological circumstances. And this distinction makes all the difference in how doctors and nurses think about it and treat its sufferers.”

The following paragraph in Dr. McHugh’s essay is especially important: “The phrase ‘life under altered circumstances’ encompasses every human sickness and disability. It also speaks to what is entailed in the professional art of medicine – the art, that is, of identifying, differentiating, curing, rehabilitating, defending, and, in the words of the Hippocratic oath, ‘benefiting’ the sick. Given that doctors and nurses naturally align themselves with life, and are trained to care for whatever life brings, including ‘life under altered neurological circumstances,’ it is only to be expected that they would reject and shrink from actions that aim to kill. Exactly how they come to that civilizing point of view in their training to become doctors and nurses is a story unto itself.”

Dr. McHugh is on to something of incredible importance here. He is concerned that the public has misperceived Terri Schiavo’s situation, and thus has misunderstood both the moral and medical aspects of her case. He takes his readers into the context of the hospice, where “doctors, nurses, social workers, and physiotherapists” work together to “develop a plan to care for someone in an incurable and usually terminal phase of life.” Customarily there are no ventilators or cardiac monitors at a patient’s bedside in a hospice “because there is no plan to transfer the patient to an acute treatment center for respiratory or cardiac support.”

“The overarching principle that hospice doctors and nurses strive to represent and exemplify,” McHugh explains, “is never to betray a patient to death, or to act directly to kill. They may help a patient surrender to death, by forgoing active medical procedures when these provided nothing but empty time and extend the period of suffering. And their particular judgments in this regard may well be challenged as ambiguous — or even arbitrary — by those with a legal mind or an ax to grind. But those judgments are usually clear to everyone working in a hospice, just as the distinction between betrayal and surrender is clear in other situations in life.”

For Terri Schiavo, this was a context for disaster. Given the conflict and disagreement between family members, Terri’s life was transformed into a legal question and thrown into the mechanism of the courts.

Dr. McHugh, looking back at the controversy, understands that, once Terri Schiavo’s case was transferred to the disposition of the law courts, “the concept of ‘life under altered circumstances’ went by the boards — and so, necessarily, did any consideration of how to serve such life. Both have been trumped by the concept of ‘life unworthy of life,’ and how to end it.”

That is a truly ominous assessment — and it is accurate. Once Terri Schiavo’s case became a matter of legal combat, the entire question was transformed from a framework of responsibility to serving and respecting Terri’s life and medical condition, to a question of how her life would be ended.

In citing his case, Dr. McHugh returns to Germany, where the phrase, ‘life unworthy of life’ emerged. A book published in Germany in 1920, coauthored by a lawyer and a psychiatrist, took as its title, Lifting Constraint from the Annihilation of Life Unworthy of Life. “Terri Schiavo’s husband and his clinical and legal advisors, believing that hers was now a life unworthy of life, sought, and achieved, its annihilation. Claiming to respect her undocumented wish not to live dependently, they were willing to have her suffer pain and, by specific force of law, to block her caregivers from offering her oral feedings of the kind provided to all terminal patients in a hospice – even to the point of prohibiting mouth-soothing ice chips. Everything else flowed from there.”

Looking back to Nazi Germany offers a point of historical reference, but Dr. McHugh argues that “we in this country have our own, home-grown culture of death, whose face is legal and moral and benignly individualistic rather than authoritarian and pseudo-scientific. It has many roots, which would require a long historical treatise to unravel, with obligatory chapters considering such chapters as the growth of life-sustaining and life-extending technologies and the dilemmas they bring, the increasingly assertive deprecation of medical expertise and the understanding of patients’ ‘autonomous’ decision-making, the explosion of rights-related personal law and the associated explosion in medical-malpractice suits, and much else besides.” Much else indeed.

All this has spawned a new discipline, known as bioethics. Dr. McHugh sees this as a disastrous development. For the field of bioethics was largely co-opted by theorists who opposed the “aims” of doctors with the “rights” of patients. He sees the development of “Do Not Recessitate” [DNR] and so-called “living wills” as “signposts of our own culture of death.” These documents do not help, Dr. McHugh explains, because they cannot replace the actual judgments made by caring doctors and nurses within the context of a specific medical situation. “To most doctors and nurses, in any case, the idea that one can control the manner and pace of one’s dying is largely a fantasy,” Dr. McHugh asserts. “They have seen what they have seen, and what they know is that at the crucial moments in this process, no document on earth can substitute for the one-on-one judgment, fallible as it may ultimately be, of a sensible, humane, and experienced physician.”

Thus, modern bioethics “has become a natural ally of the culture of death,” rationalizing excruciating medical dilemmas and negotiating the value of human life in an inevitably downward spiral.

In the end, Dr. McHugh argues that in Terri Schiavo’s case, the culture of death “won out over the hospice’s culture of life, overwhelming by legal means, and by the force of advanced social opinion, the moral and medical command to choose life, to comfort the afflicted, and to teach others how to do the same.”

Dr. McHugh’s conclusion is truly ominous. “The more this culture continues to influence our thinking, the deeper are likely to become the divisions within our society and within our families, the more hardened our hatreds, and the more manifold our fears. More of us will die prematurely; some of us will be persuaded that we want to.”

Premature death, and the desire for the rationalization of death, are hallmarks of a culture flirting with moral disaster. We are indebted to Dr. Paul McHugh for his medical analysis and moral courage. The real question is what we are now prepared to do in confronting the culture of death. Now that Terri Schiavo is dead, most Americans have moved on to other concerns. Who will be next?