The role of litigation in end of life care: a reappraisal.
The problems posed by end of life decision-making are but one more example. Since 1975, people wishing to forgo life-sustaining medical treatment or their families have relied on the judicial system to solve a problem that undoubtedly has a legal component, but that might have been resolvable outside the courts. In 1975, it was the Quinlan case; today it is the Schiavo case, a contemporary Bleak House, spawning a mini-industry of litigation--endless rounds of essentially the same arguments made in different courts (and sometimes the same courts) through different (and sometimes the same) lawyers.
The lesson of Schiavo, if not of its five score or more predecessors, is this: our assumptions about litigation--that it provides a resolution to individual and social problems, that this resolution is final and uncontestable, and that there are no other last-resort mechanisms for resolution--are largely unsustainable. But then again, that is a rational conclusion, and addiction is not a rational process.
Limits of Litigation
Perhaps it is inevitable that end of life cases end up in court. Just consider the situation of the first prominent case to do so--the case of Karen Ann Quinlan. Here was a young woman in what her doctors said was a state of unconsciousness from which she would never emerge. Although not dead, her parents believed--as did most people--that her life was over. From time immemorial, when this has occurred, we have buried or burned our dead. But Ms. Quinlan's doctors--for a variety of more or less understandable reasons given the era in which these events occurred--would not, in effect, permit this to happen. Her parents were denied the opportunity to mourn their loss in a culturally and what their Catholic religious advisors considered to be a religiously appropriate way.
They had two choices: accept this affront to their values, their beliefs, and their dignity, or fight it. They fought it as long as they could through conventional means, but when those ultimately failed, they could continue to fight only by resorting to litigation. Litigation, however, has several limitations that ultimately make it a very unsatisfactory weapon in the armamentarium of solutions to end of life disputes.
Jurisprudential limits of litigation. In the litigation of end of life cases, like many other kinds of cases, the battle does not end the war. In all cases, the judicial decision, strictly speaking, applies only to that case. Everyone other than the parties to the case is entitled to ignore the decision--indeed, to defy it--with legal impunity. What happens in fact is far more complex than either uniform acquiescence or uniform defiance. Every litigated case in which an opinion is written by the court--and sometimes several opinions are written (there were four in Cruzan)--raises far more questions than it answers. This results from two factors.
First, litigation attacks problems piecemeal. Courts only answer questions they are asked, and litigants only ask questions that must be answered for the resolution of their particular dispute.
Second, this is not quite true. Courts write opinions that are sometimes quite discursive, and this has certainly been characteristic of end of life cases, where opinions sometimes exceed one hundred pages. However, every opinion is made up of two parts: holding and dicta. The holding of the case is the only part of the case that, strictly speaking, is law. The holding constitutes the answer (or answers) to the question (or questions) presented by the parties to the court. All the rest is, as the lawyers say, obiter dictum--"A judicial comment made while delivering a judicial opinion, but one that is unnecessary to the decision in the case and therefore not precedential (although it may be considered persuasive)." (1) Thus, although certain limited parts of a court's opinion are law, the remainder of the opinion gives guidance about how the law might develop in the future. Reliance on this guidance is at one's own risk.
Thus, while the case before the court is resolved once and for all, there is a lack of finality in a broader sense. New cases that arise, no matter how similar, may have slight factual differences that dictate a different legal outcome. No one can foresee all the issues that might arise in the future and all of the convoluted twists and turns they might take. This is why judicial opinions, apart from the holdings, are not binding. Judges do not want to decide issues they are not compelled to in part because real facts bring issues into sharper focus.
Practical limits of litigation. Litigation adds trial to tribulation, both literally and figuratively. There are all sorts of costs, and in advance they are incalculable. Litigation is expensive and emotionally draining (sometimes unimaginably so), primarily because it is also time-consuming--so time-consuming that in many end of life cases the patient expires before the litigation does.
And in the end, litigation is a blunt instrument for the resolution of disputes. It can fine-tune a resolution only to a limited extent. In end of life cases, the parties are left with a pronouncement--treatment may be terminated, must be terminated, or must not be terminated--and they are left to pick up the pieces of shattered human relationships-among family members, among health care professionals, and between family members and health care professionals. Acrimony is beyond the scope of litigation to repair.
Practical limits of implementing case law. High-profile end of life cases are well publicized. People who need to know about them--primarily health care professionals--learn about them from a variety of sources, and the holdings in these cases become part of the lore of clinical practice. However, the judicial opinions are often complex, and as the information gets passed along, it gets simplified, and sometimes oversimplified, and sometimes distorted, as in a children's game of "telephone."
Even experts can succumb to reductionist tendencies and lose sight of the subtleties. Lawyers may be inclined to obscure the subtleties in order to enhance the case's comprehensibility.
Even if clinicians really understand the law, they need to be able to apply it to actual clinical situations. An intellectual understanding of the law--even a recognition that one is faced with a clinical situation to which the law applies--does not come close to assuring compliance with it. Resistance to applying the law can arise from nonrational sources. If the law in question is in conflict with a professional's strongly held values, resistance to applying it can be a serious impediment to behavioral change. Nor will courts' pronouncements that the legal principles they are enunciating square with the ethos of the health care professions guarantee that clinicians will adopt and abide by those professional views.
Costs and dangers of an agenda defined and driven by litigation. It is hard to imagine a world in which medical technology could have developed to the point that it has without creating the ethical dilemmas that it has. And given the pervasive nature of law in our society, it is equally hard to imagine that law would not have played a role in addressing these dilemmas. Assuming that legislatures will act reluctantly, if at all, to remove or mitigate them, sometimes there is no choice but to resort to litigation. Other mechanisms for dispute resolution usually meet their match when the trump card is the possibility of legal sanction.
Litigation undeniably resolves individual cases, although the costs of doing so can be high. Judicial opinions have also brought a measure of clarity to the end of life decision-making process and thus the end of life for untold numbers of patients and their families, sparing them both the trauma of a prolonged and burdensome dying process and the added trauma of litigation.
The legally driven agenda has not been cost free, however. In addition to the costs to the individuals involved in litigated cases, there are costs to society at large--and to particular subgroups.
External imposition. One significant cost of litigation has been felt by health care professionals--and, most likely, predominantly by physicians. First, litigation can make the parties feel imposed upon from outside. Second, physicians may feel that they have been imposed upon by what they regard as a rival profession, with the subtlety being lost that it is judges, not lawyers, who make law, and with the further lost subtlety that judges are merely carrying out their socially sanctioned role. Third, and perhaps most important, this outside imposition has often conflicted with the ethics, ethos, customs, and deeply held values of the health care professions, or at least of individual clinicians.
The result has been a certain demoralization of health care professionals, who resent being told what to do and how to do it, particularly since professionals traditionally have some measure of control over their own work. To top it off, the courts have usually insisted that what they are asking of health care professionals is not inconsistent with the ethics of the medical profession, when in fact it probably is--or at least was, in the earlier years. And in any event, it is sometimes inconsistent with the personal values of individual health care professionals.
Nonmajoritarian law-making. Litigation has another drawback: the courts are a somewhat unusual law-making entity in a democratic society because they are often nonmajoritarian. In resolving ordinary disputes, this is rarely a matter of much contention, but when courts settle issues that are part of a much larger and contentious social debate, they are sometimes subjected to criticism on the grounds that the issue would better be resolved by legislatures--in part because legislatures are majoritarian institutions, and in part because legislatures can engage in the kind of fact-finding that is thought to provide a more comprehensive, rational, and socially acceptable outcome. Indeed, courts themselves have frequently pointed out in end of life cases that although they must decide the issue before them, it would be better if a comprehensive resolution were prescribed legislatively.
Law-making by elites. One of the consequences of judicial law-making is that the resulting law is imposed by elites. Further, in the end of life context, the content of the law has been significantly shaped by elites--medical, policy, even religious elites. Courts have relied on the opinions of academic physicians, for example, in recognizing the existence, meaning, and implications of the permanent vegetative state. The dominant judicial view that artificial nutrition and hydration is no different from forgoing any other kind of medical treatment has been influenced in significant part by the views of both religious and medical elites. And the larger consensus about forgoing life-sustaining treatment has been significantly shaped by the report of a presidential commission whose staff was drawn largely from academia.
It is not, however, the elites upon whom the impact of the law usually falls on a day-to-day basis. It is physicians and other health care professionals who play little or no role in developing the law and who may not even be aware of, let alone subscribe to, the views of their professional organizations or their professional leaders. It is the pastoral clergy of all denominations who counsel patients and their families, often at the bedside, at or near the end of life, who also play little or no role in shaping the views to which they supposedly subscribe, and again who may not even be aware of them or of their nuances. It should not be surprising, given these facts, that the law is so foreign to--and thus resisted by--the troops in the field
Assumptions about quality of life versus vitalism. Finally, the judicial consensus that has developed around end of life decision-making has been based on a reasonable, but nonetheless questionable, assumption. The assumption is that, at or near the end of life, people prefer dying a peaceful, nonmedicalized death to eking out a few additional days or weeks or months sustained by high-tech medical interventions. Put another way, the assumption is that the quality of a person's existence is always relevant in determining what medical treatment should or should not be administered.
Patients in the litigated cases certainly have expressed a preference--either contemporaneously or through an oral or written advance directive--for quality of life to be a determinative factor in how they die. And perhaps this preference is shared by most people. But it is not what everyone wants. A vocal proportion of the population, growing ever more vocal, believes that life per se is a pearl beyond price and must be preserved at all costs regardless of the burdens that might be imposed by life-sustaining medical treatment. (This set of beliefs, known as "vitalism," has given rise to what are popularly called "futility cases.") Another vocal segment of the population believes that the quality of life ought to be irrelevant to the decision whether to administer or forgo life-sustaining medical treatment, and that to withhold or withdraw such treatment constitutes discrimination on the basis of disability and devalues the lives of the disabled.
Law that deals with high-profile, emotionally charged issues is certain to meet some resistance from those who feel its impact the most. But when that law is developed in the way end of life law has--sometimes inconsistent with the norms of health care professionals, predominantly nonmajoritarian, under the influence of elites, and based on assumptions that may be less widely shared than is often assumed--it is virtually certain to meet resistance. Perhaps it would have met resistance even if it had developed primarily through legislation, but in a legislative forum, opposing points of view might have more readily been expressed and had more impact on its development.
A Contemporary Litigation Agenda
Despite these reservations, litigation will almost certainly not be abandoned in the end of life context as an instrument either of dispute resolution among interested parties or of efforts to effect social and legal change. With respect to dispute resolution, the conditions that initially gave rise to the use of litigation to resolve end of life disputes remain unchanged. Thus, when one's back is to the wall, as it was in Quinlan, the only socially acceptable alternative in our society, other than walking away, is to litigate. And this is a good thing, because when this alternative is unavailable (or is available but unknown), people sometimes resort to force or violence. (2)
In terms of larger social change, other options exist. First, alternative means of effectuating change are sometimes available--with efforts to enact legislation or to convince administrative agencies to promulgate regulations and enforce existing ones prime among them. In the wake of Schiavo, state legislatures may be more willing to enact broad legislation for end of life decision-making. However, as the sages say, be careful what you wish for. If legislative change is forthcoming, in the immediate aftermath of Schiavo it may roll back the consensus that has been carefully and deliberatively crafted over the past thirty years.
Failing legislative or administrative solutions--or because such solutions may attempt to roll back the consensus--litigation may continue to be the change agent of choice. What should its goals be? Assuming the effort is to effect change in the law--not merely to answer a narrow question--these are the current priorities:
Signing more states onto the consensus. Given that the legal consensus about end of life decision-making is under attack from vitalists, disability rights groups, and opponents of forgoing artificial nutrition and hydration, efforts need to be made to strengthen the consensus. In some states this means merely getting the supreme court to articulate what everyone assumes to be the law: the right of competent patients to forgo medical treatment and the right of incompetent patients to have close family members make these decisions for them. In half of the states, these fundamental principles have not yet been articulated in case law, and to the extent that they are recognized in advance directive legislation, they are frequently hedged with significant exceptions. For example, some advance directive statutes limit the effectiveness of an advance directive if the patient is pregnant or if the treatment in question is a feeding tube.
Clarifying ambiguity. Another important--and related--goal is to urge courts to clarify some ambiguous areas of seemingly settled law. One pressing example is the meaning of the "clear and convincing evidence" standard. Everyone called on to apply this standard--including lawyers--needs to understand that "clear and convincing evidence" refers to a standard of proof (an evidentiary standard), not to a substantive standard by which surrogates are to be guided. What is crucial is that "we view the clear and convincing evidence standard not as a decision-making standard, but as an evidentiary standard of proof that applies to all decisions regarding termination of treatment, regardless of the decision-making standard employed." (3)
Grounding the law in state constitutions. The decisions of state courts are subject to nullification by state legislatures unless the judicial decisions are grounded in the state (or federal) constitution. Thus a primary goal of any litigation agenda must be to anchor the consensus firmly in state constitutional law. This has happened only occasionally in the past, most notably (and most ironically, in light of Schiavo) in Florida. Not all states have constitutional provisions that lend themselves to such an effort, but many do.
Beyond autonomy. The concept of autonomy has played a central role in the legal development and analysis of end of life decision-making. It has been so dominant that it has sometimes been stretched beyond the breaking point. Although some have questioned this dominance, for the most part these have been lost voices in the wilderness. Perhaps it is time to forge a litigation agenda that urges courts to rethink the role that autonomy should play, especially in comparison with two competing values-economic justice and the interests of other concerned persons.
Justice. One of the more contentious issues--and an issue that legislatures are unlikely to take on--is the question of how to address the economic realities that affect all medical decision-making, but especially decision-making at the end of life. End of life litigation has had only brief and episodic contact with this issue in the guise of the so-called futility cases. Even though we are engaged in a forthright public debate about escalating health care costs (which have now priced more than forty million Americans out of the health insurance market), about the unsustainable costs of Medicare, and most recently about the explosive growth in Medicaid costs (which threaten to overwhelm state budgets and severely curtail the resources available for other essential social needs), we still ignore this reality when we address end of life medical care. To address it better will require an increased awareness of the role that justice might play in end of life decision-making.
Interests of health care professionals. Just as justice may need to be introduced into the debate as a counterbalance to autonomy, there has been a paucity of attention paid to the interests of health care professionals and families in end of life decision-making--except to the extent that courts have almost uniformly rejected these considerations as not worthy of consideration because they are antithetical to patient autonomy. Considerations of professional interests have arisen when health care professionals object to judicial orders permitting the termination of medical treatment because they feel morally compromised by participating in the termination. The usual resolution of such cases (there is only a smattering) is for the patient to be transferred to the care of others who share the patients' views. But this does not fully address the issue. Consideration needs to be given not only to the moral sensibilities of health care professionals, but also to the many people who care for terminally ill patients but who are not usually thought of as professionals, such as aides and orderlies. This is especially true in long term care facilities, where strong emotional bonds are perhaps more likely to develop between caregiver and patient.
Family interests. Similar attention--a fortiori--needs to be paid to interests of the patient's family, which, like caregivers, should be defined more in terms of social realities than formal relationships. There are relations by blood and by marriage whose interests, given their past and current relationship with the patient, are not particularly strong, and there may be others friends and domestic partners--who have no legal relationship to the patient but who have a strong social relationship. Crafting law that gives consideration to the interests of these individuals is a daunting task, but to ignore them completely is unjust and can give rise to the kinds of conditions that created and perpetuated the conflict in Schiavo.
Avoiding Litigation, and Doing It Better
The moral of the tale is consistent with what is known of litigation in other spheres: litigation has significant limits as an instrument of systematic social change. While it would be naive to advocate that litigation not continue, we must try to use other means of social change. Perhaps we need to pay more heed to judges' pleas that legislatures address end of life issues. Our first priorities might be better statutes on advance directives--such as the adoption of the Uniform Health Care Decisions Act--and on the use of adequate treatment of pain. However, in the current climate, if the goal is to preserve the consensus about end of life decision-making, it may turn out that what we need is not an alternative to litigation, but a smarter litigation strategy.
(1.) Black's Law Dictionary, 8th ed. (2004).
(2.) See S. Miles, "Taking Hostages: The Linares Case," Hastings Center Report 19, no. 4 (1989): 4; McKay v. Bergstedt, 801 P.2d 617 (Nev. 1990).
(3.) In re Martin, 538 N.W.2d 399, 406 n.12 (1995). See also Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261, 350 (1990) (Stevens, J., dissenting).
Alan Meisel, "The Role of Litigation in End of Life Care: A Reappraisal," Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 35, no. 6 (2005): S47-S51.
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|Publication:||The Hastings Center Report|
|Date:||Nov 1, 2005|
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