Robert A. Burt

The Supreme Court Speaks — Not Assisted Suicide but a Constitutional Right to Palliative Care

The Supreme Court has unanimously ruled that there is no constitutional right to physician-assisted suicide.1,2 Unexpectedly, however, the Court did much more than simply uphold the New York and Wa...

Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup.

For critically ill patients and their loved ones, high-quality health care includes the provision of excellent palliative care. To achieve this goal, the healthcare system needs to identify, measure, and report specific targets for quality palliative care for critically ill or injured patients. Our objective was to use a consensus process to develop a preliminary set of quality measures to assess palliative care in the critically ill. We built on earlier and ongoing efforts of the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup to propose specific measures of the structure and process of palliative care. We used an informal iterative consensus process to identify and refine a set of candidate quality measures. These candidate measures were developed by reviewing previous literature reviews, supplementing the evidence base with recently published systematic reviews and consensus statements, identifying existing indicators and measures, and adapting indicators from related fields for our objective. Among our primary sources, we identified existing measures from the Voluntary Hospital Associations Transformation of the ICU program and a government-sponsored systematic review performed by RAND Health to identify palliative care quality measures for cancer care. Our consensus group proposes 18 quality measures to assess the quality of palliative care for the critically ill and injured. A total of 14 of the proposed measures assess processes of care at the patient level, and four measures explore structural aspects of critical care delivery. Future research is needed to assess the relationship of these measures to desired health outcomes. Subsequent measure sets should also attempt to include outcome measures, such as patient or surrogate satisfaction, as the field develops the means to rigorously measure such outcomes. The proposed measures are intended to stimulate further discussion, testing, and refinement for quality of care measurement and enhancement.

The suppressed legacy of Nuremberg

The story of patient self-determination cannot be told without the Nuremberg trials. Patient autonomy was the first criterion enunciated by the Nuremberg judges and has served as a touchstone for human subject research and patient care ever since. Yet this ideal was in an important sense irrelevant at the moment it was originally proclaimed.

Developing Constitutional Rights of, in, and for Children

The Supreme Court has in recent years decided many cases challenging state substitute-parenting activities. The increasing number of such cases on the recent Supreme Court docket is itself a striking fact, most likely reflecting the Courts perception of widespread concern about family structure in the society. Taken together, these decisions appear to vest constitutional rights in both parents and children against state interventions and increasingly to curtail state authority to intervene against parental wishes on behalf of children. But the Court has not yet formulated a coherent rationale for this stance, nor has it acknowledged that its application of constitutional norms in these cases yields some generalizations about the permissible scope of state substitute-parenting activities. This discussion will address that task. It will not consider state inter-

Law's effect on the quality of end-of-life care: Lessons from the Schiavo case

The political circus surrounding Terri Schiavos death is unlikely to repeat itself soon in other cases but the underlying event that precipitated the furor is a recurrent clinical problem-the problem of conflict among family members about withdrawing or withholding life-prolonging treatment for an incompetent patient who had left no advance directive or appointed healthcare proxy. The laws of most states purport to solve this problem by automatic appointment of one person among the disputing family members. However, this forced resolution of the family conflict does not clearly reflect the prior values of the incompetent patient and is likely to intensify rather than ease that conflict, providing no demonstrable benefit to the incompetent patient and complicating the psychological processes of mourning for the surviving family. This article explores the benefits of a different legal rule that would require family consensus before life-prolonging treatment is withdrawn or withheld for an incompetent patient who has indicated no prior wishes regarding the resolution of family conflict.

Futility in the intensive care unit: hard cases make bad law.

As Dr. John Luce’s historical review article (1) demonstrates, the legal rules governing provision of life-prolonging interventions have shifted during the past 40 years. The new rules, which are now widely accepted, clearly permit patients with decisional capacity or their legal surrogate decision-makers to decline interventions, even if those interventions are required to sustain life. However, when there is disagreement between clinicians and family surrogates about whether to withhold or withdraw lifesustaining treatment, the legal rules are much less clear and there is considerable dispute about them. The dispute often centers on the issue of using “medical futility” as the basis for unilateral decisions by clinicians to override family surrogates’ demands for treatment. Malpractice lawsuits have been brought in a few jurisdictions against clinicians who have unilaterally withheld life support on the basis of futility, but, as highlighted by Luce, judges or juries have generally upheld the clinicians’ actions as based on acceptable professional practice. Furthermore, in one state—Texas—the legislature has enacted a procedural approach by which family demands for treatment can be reviewed by the hospital ethics committee, which can provide a ruling that permits medical professionals to unilaterally withdraw life support and, in the process, obtain protection against subsequent legal liability (2, 3). These protections for unilateral clinician decision-making, however, have been subject to considerable criticism on the grounds that “futility” does not have clearly accepted scientific definition and that disputes about prolongation of life inescapably involve value judgments in a situation in which patients’ (or their families’) values should generally prevail (4– 6). At the moment, the proponents and opponents of futility as a basis for unilateral clinician decision-making remain at loggerheads, and the dispute seems likely to persist. In our judgment, this dispute diverts attention from the important issues. First, as Luce points out, persistent disagreement between clinicians and family surrogates about withholding or withdrawing treatment is quite rare. The majority of conflicts or disputes about withholding or withdrawing life support can be resolved through deliberate communication and negotiation. We should devise programs to train clinicians in the skills needed to resolve the majority of these cases and not focus on the rare intractable ones. Second, these rare cases of persistent disagreement are often “worstcase scenarios,” and any attempt to develop rules designed to settle these extreme cases could have an unfavorable effect on the resolution of more common and less intractable disputes. This is what Justice Oliver Wendell Holmes meant when he classically observed, “hard cases make bad law” (7). Finally, the concept of “futility” should be incorporated into the process of careful, self-critical deliberation by clinicians as a way to ensure accurate prognostication and communication of prognosis among the clinical team and to patients and families. Futility should be considered by clinicians as an important part of careful prognostication, independent from its use for unilateral decision-making (8). In this way, clinicians can make an honest appraisal of the chances for success. During this appraisal, the futility of a specific treatment is an important but, because of inaccuracies in our ability to prognosticate, rare determination in the intensive care unit. Regarding the issue of unilateral decision-making, a fundamental premise for rule-making should be that the inability of clinicians and family to reach agreement in itself undermines the welfare and sense of integrity of both sides. From this premise, it follows that for those few cases in which disagreement does persist, the best approach would be to use a system that encourages skilled and deliberate communication in an effort to build trust, develop shared understanding, and ultimately achieve agreement. It is important and appropriate that in this mutually engaged pursuit, clinicians use their knowledge and resources to develop a supported prognosis, articulate their degree of certainty in the prognosis, and communicate this prognosis and degree of certainty to the family. Clinicians should communicate their professional judgments about the ways that the treatment that they conclude to be futile does disservice to the patient. However, it is equally important that the clinicians remain visibly open to the possibility of contrary judgments by the family on behalf of the patient—to the possibility, for example, that odds of one chance in a thousand of a favorable outcome might be consistent with the patient’s values, even though such unfavorable odds are viewed as futile to most or even all medical professionals. This possibility can only emerge in a process that engages both clinicians and families in an indepth exploration of different perspectives, enhanced understanding of opposing viewpoints, and mediation of the opposing sides. Through this process, it may in some cases become clear to the clinicians that family members cannot bring themselves to make a clear-cut decision to withhold or withdraw life-sustaining treatment, even though the family believes it is the right decision. The family’s reluctance may arise from religious views, cultural values, or interpersonal tensions. Clinicians should be alert to this possibility and devise ways to help the family come to a decision without being burdened by fully acknowledged responsibility for it. In this circumstance, “informed assent” may be an appropriate approach; the clinician can explain the basis for his or her professional judgment about the futility of continued interventions and indicate his or her own willingness to take responsibility for decisions to withhold or with*See also p. 1623.

Protecting children from their families and themselves: State laws and the constitution

State laws provide a variety of means to protect children from self-inflicted or parentally-inflicted harm. In recent years, the Supreme Court has imposed stringent procedural requirements on juvenile delinquency laws. In the past year, however, the Court has refused to extend these procedural stringencies to analogous child-protective state laws. This article explores generally the rationale for court application, by constitutional mandate, of procedural safeguards to a broad range of child-protective legislation. The article suggests that some criminal-procedure rights are vitally important to protect children and their parents from inappropriate state interventions, but that wholesale application of all criminal rights, as if these laws were no different from criminal laws, unduly restricts proper application of these laws. Guidelines for determining what criminal rights should and should not be applied to child-protective legislation generally are suggested.

Conversation with Silent Patients

In March 1976 the New Jersey Supreme Court ruled that Karen Quinlan’s father could be appointed her guardian in order to direct termination of her treatment because, although Karen was an adult, she was comatose and her physicians believed there was “no reasonable possibility” she would ever regain consciousness.1 Mr. Quinlan had sought advance judicial approval for this course; the court left unclear whether any judicial participation in such decision would be necessary for future cases or whether a person’s comatose state and the physicians’ gloomy prognosis would themselves justify such decision by immediate family without fear of subsequent civil or criminal liability.* In July 1976 the Massachusetts Supreme Judicial Court ruled that such a decision to withhold treatment should be made directly by a judge in a declaratory proceeding rather than by some judicially appointed guardian.2 In this case, Joseph Saikewicz was a profoundly retarded, virtually uncommunicative 66-year-old man diagnosed as suffering from an incurable leukemia. His physicians sought and obtained judicial authorization to withhold an apparently painful course of chemotherapy that might have extended his life for six months to a year.

Invitation to the Dance: Lessons from Susan Sontag's Death

The standard model for end-of-life decision-making gives roles to two parties—the physician, who explains the medical options, and the patient, who selects from among those options. The model can be harmful not only for individuals but also for the state, if the patients right to control her own choices is understood as a positive right of access to whatever is available.

To Praise Willowbrook and to Bury It

Book reviewed in this article: The Willowbrook Wars: A Decade of Struggle for Social Justice. By David J. Rothman and Sheila M. Rothman.