|Author:||Johnson, Sandra H.|
|Publication:||Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2011 Hastings Center ISSN: 0093-0334|
|Issue:||Date: Jan-Feb, 2011 Source Volume: 41 Source Issue: 1|
If That Ever Happens to Me: Making Life and Death Decisions after
Terri Schiavo. By Lois Shepherd. The University of North Carolina Press,
2009. 192 pages. Hardcover. $28.00
Lois Shepherd's book If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo demonstrates a great appreciation for the unresolved conflicts over end-of-life care revealed by the Schiavo case. Through detailed analysis, this book debunks the claim that the controversy defied an established consensus concerning the appropriateness of withdrawing medically administered nutrition and hydration. Arguments that settled legal standards provided a stalwart framework for that consensus failed to appreciate the variations and limitations of those norms. Shepherd challenges the notion that we professionals--doctors, lawyers, judges, and bioethicists--had authoritatively resolved the moral and social significance of withdrawal of nutrition and hydration.
In fact, law is where we have kept our conflicts alive. The controversy over Terri Schiavo's care demonstrated the startling capacity of the legal system to be used to extend disputes beyond reasonable bounds. Observed more closely, the case shows how our laws have embedded unresolved tensions within the framework for surrogate decision-making relating to end-of-life care.
Legal standards for surrogate decision-making in the United States require a highly individualized inquiry into a particular patient's desires in anticipated and unanticipated medical situations as she may or may not have communicated them to others. Much of the judicial crafting around life-sustaining treatment decisions has focused on establishing a particular evidentiary standard for determining the particular patient's choice. This approach reflects respect for individual liberty in intimate decisions, as well as deference to America's moral and religious pluralism. In focusing on variation among individuals and in failing to establish a substantive rather than process norm for withdrawing treatment, however, the current legal framework ensures continuing battles over the morality of specific decisions and clashes over significant facts in particular cases.
Most states still have discrete threads rather than a full fabric of law that is applicable to end-of-life decision-making. States often have only one or two appellate cases addressing such issues, and the rulings in them are usually confined to the facts of the case before the court or to closely related situations that the court can imagine and address in dicta. And much of existing case law involves persons in a permanent vegetative state, relying on reasoning stemming from the condition's irreversibility and the patient's absence of awareness--so much so, in fact, that some states have what amounts to "PVS law," rather than case law on life-sustaining treatment generally. Furthermore, living will and durable power of attorney statutes in many states reflect the compromise of principles that occurs in the legislative process and refer to particular medical conditions, like terminal illness or irreversible coma, and to nutrition and hydration as distinct from other treatment.
Legal academics meld general common law principles, constitutional theory, and various state laws into a "consensus" on legal standards. Practicing attorneys, however, must focus on particular decisions for particular patients in a particular state and in many circumstances can't tell their clients with certainty what the law is. This indeterminacy can be a problem in situations where interpersonal conflict persists and escalates, but it may not be particularly concerning in most cases. When treatment decisions proceed without conflict, law tends to stay in the background. For example, the high standard for clear and convincing evidence established by Cruzan v. Director, Missouri Department of Health does not make it impossible for surrogates to decide to withdraw nutrition and hydration in Missouri, even where evidence of the patient's choice fails to meet the standard. But the fact that law doesn't necessarily determine decisions in particular cases doesn't mean that a consensus on applicable legal standards exists. Physicians and surrogates continue to draw lines that don't conform to the so-called consensus. As David Orentlicher recently observed in the Annals of Health Law, doctors and nurses continue to react differently to withdrawing rather than withholding treatment, for example, and physicians are more hesitant to recommend withdrawal of nutrition and hydration than the withdrawal of a ventilator.
As a society, we have experienced end-of-life decision-making in two ways. In one, decisions concerning which medical pathway to follow--aggressive treatment to stave off death or comfort care while death approaches unimpeded--are made many times each day without media attention or legal assistance. Family members and loved ones may discover that what seemed clear as a matter of principle looks quite different when applied to a specific situation. They may find that withdrawing treatment is harder than anticipated, or that continued interventions are not consistent with the respect and care they want for the patient. But in the end, they come to a decision they can live with, and no one takes notice. In other cases, everything explodes. The media converge in full force, protestors on both sides swoop in, and the legal system gears up for a fight. The parties become symbols in a battle over competing, incompatible visions of what our society should be, how much of a claim we have on each other, and how best to care for persons who cannot speak for themselves. Such is Schiavo.
If That Should Ever Happen to Me makes two particular contributions to our understanding of the Schiavo conflict. The first is its identification of the use of certainty as a rhetorical device in the debate. Fearing that any concession on facts or values would undermine their position, advocates on both sides overstated the reliability or inaccuracy of Terry Schiavo's diagnosis, the purity or malevolence of her parents and husband, and the clarity of her choices. In a relentlessly honest examination, Shepherd concludes that the evidence concerning Ms. Schiavo's desires was "fairly sparse and nonspecific." She criticizes those who, during the course of the conflict, dismissed as fictional the existence of a minimally conscious state and the potential for misdiagnosis in PVS. Nor does she have kind words for those who diagnosed Ms. Schiavo as being conscious and interactive based on intermittent and long-distance observation. She believes the debate that took place between them destroyed an "appreciation for the uncertainties and doubts that these kinds of cases necessarily entail" (p. 5). Her book attempts to salvage that sense of uncertainty as an essential component in improving decision-making around end-of-life care.
Shepherd's second contribution is her insistence that we reckon with families and other intimates as the flawed human beings that they often are. She observes that both the Schindlers and Michael Schiavo had their own interests that could impede their ability to act unequivocally on Ms. Schiavo's behalf. The damaged relations that underlay the fight between Ms. Schiavo's parents and husband are not unique. In fact, Joe and Joyce Cruzan became their married daughter's guardians after Joe Cruzan had come to view Nancy's husband as inattentive. And shortly after being appointed her guardians, her parents divorced Nancy from her husband.
Such conflicts and misunderstandings can arise in any family. At the time of the Cruzan case, for example, my own adult daughter Katie gave me explicit direction concerning her choices should she ever end up like Nancy Cruzan. Her views on this seemed reasonable and consistent with her general view of things. Years later, when Terri Schiavo was in the news, I told my daughter that I remembered how clear her directions to me had been: if she was in a PVS, she wanted to continue treatment for two years to assure that her condition was irreversible. Now, however, she said she'd changed her mind some time earlier--she wanted treatment continued for only a few months to avoid risking a "recovery" that would likely leave her with only the barest awareness. Once again, I thought that she was making a reasonable choice, but I was surprised that she had not told me of this significant change. When I asked her why she hadn't, she replied that she had told her husband. Katie was a newlywed of just a few months, and I liked and respected her husband very much. To be honest, though, I still harbored a sense of reserved judgment that new in-laws usually have during that "probationary period" of an adult child's early marriage. I saw then what it might feel like to believe that a person who had recently arrived in her life was defying my daughter's wishes as she had so clearly communicated them to me, even though our dispute would only be about when to stop treatment and not whether to stop it at all.
Shepherd offers recommendations for avoiding conflicts and improving end-of-life decision-making overall. Some are quite specific. She advocates reversing the current presumption to continue medically administered nutrition and hydration for patients with a confirmed diagnosis of PVS unless there is evidence that the patient would have wanted it. She recommends more rigorous diagnostic practices. She criticizes particular post-Schiavo legislative proposals that would restrict patients and surrogates in their decision-making around life-sustaining treatment. And she correctly sees that requirements for written advance directives will override authentic choice in individual cases.
Necessarily, however, most of Shepherd's recommendations tend to focus on respect, listening, and accommodating the interests of both patients and families. These recommendations generally lack the clear boundaries, categorization, and decision trees that some who are more analytical would prefer, but they are consistent with her appreciation for the uncertainties that exist both at the bedside and in policy-making.
Lois Shepherd makes the point that "By failing to appreciate these complexities, we have not advanced our understanding of how best to handle end-of-life decisions" (p. 5). I agree with her that the Schiavo episode--and the next one sure to come down the road--shows that our social and political experience of end-of-life decision-making hasn't changed much since the days when Karen Quinlan's parents were accused of intending to murder her and Joe Cruzan felt it necessary to physically block the door to the room where his daughter was dying. Thought leaders in medicine, politics, ethics, theology, law, and the other disciplines involved in these public debates would serve society better if they spoke with less certainty and admitted more ambiguity.
|Gale Copyright:||Copyright 2011 Gale, Cengage Learning. All rights reserved.|