«I. INTRODUCTION: THE IMPORTANCE OF FUTILITY Despite twenty years of development in patient rights, end-of-life decisions still trouble law and ...»
ETHICAL POSTURES OF FUTILITY
AND CALIFORNIA’S UNIFORM
HEALTH CARE DECISIONS ACT
MATTHEW S. FERGUSON∗
I. INTRODUCTION: THE IMPORTANCE OF FUTILITY
Despite twenty years of development in patient rights, end-of-life
decisions still trouble law and medicine. It is estimated that more than
14,000 patients live in a permanent unconscious state, often supported by artificial means.1 Given that almost 80% of deaths occur in medical or nursing care institutions, and approximately 70% of these deaths result from an active decision to withdraw or withhold treatment,2 our society is faced with difficult decisions about treatment at the end of life.
The past twenty years have mostly settled that patients’ right to control their own care is founded upon the right to privacy and autonomy.
Such increased patient autonomy and control, however, have given rise to new concerns. Rather than the patient’s right to refuse care when physicians attempt to intervene, care providers now grapple with the patient’s demand to continue medically inappropriate—or futile— ∗ J.D. 2002, University of Southern California; M.A. 1998, Katholiek Universiteit Leuven;
A.B. 1996, Princeton University. I would like to thank Professor Alexander Capron for his insight and assistance with this Note.
1. Jeanine Lewis, Chapter 658: California’s Health Care Decisions Law, 31 MCGEORGE L.
REV. 501, 503 (2000).
2. Keith Shiner, Medical Futility: A Futile Concept?, 53 WASH. & LEE L. REV. 803, 805 (1996) (citing Helene L. Lipton, Do-Not-Resuscitate Decisions in a Community Hospital: Incidence, Implications, and Outcomes, 256 JAMA 1164, 1168 (1986)). Justice Brennan cited figures similar to these in his dissent in Cruzan by Cruzan v. Director, Mo. Dep’t of Health, 497 U.S. 261, 302–03 (1990) (Brennan, J., dissenting).
1218 SOUTHERN CALIFORNIA LAW REVIEW [Vol. 75:1217 treatment.3 While we commonly accept the proposition that the physician should give the “patient all necessary and continued attention as long as the case requires,” 4 we have yet to determine what is required. In fact, what is required shifts with changing technologies and medical expectations.
Given a dearth of clear legal and ethical definitions, health care providers must often struggle with decisions about the application of futile treatments that present novel legal challenges and implicate the ethical and moral role of physicians.
California’s Uniform Health Care Decision Act (“UHCDA”),5 which went into effect on July 1, 2000,6 presents a comprehensive codification of end-of-life decisions. It consolidates the typical common-law and modern
statutory tools that have been adopted to manage end-of-life decisions:
advance directives, surrogacy, and physician duties and institutional chains of command. 7 Historically, California has been at the forefront of developments in medical decisionmaking. The UHCDA codifies and refines the essential precepts of patient autonomy that have developed over the past twenty-five years.8 In 1976, California became the first state to enact a “living will” statute, known as the Natural Death Act.9 In 1983, California enacted a durable power of attorney for health care law.10 The UHCDA, while a clear conglomeration of these previous California guides, must situate the futility provisions within the developments of the past twenty-five years and the attending ethical developments that have occurred in American medicine. It represents a unification of the legal and moral shift attending to patient autonomy, but requires further development to resolve the dilemma of futility adequately.
3. For the sake of convenience, I will frequently use the term “physician” in the place of the more generic term “health care provider.” The use of “physician” is not meant to exclude other caregivers, like nurses, psychotherapists, or clergy. When important distinctions arise, caregivers other than physicians are mentioned explicitly.
4. Eric M. Levine, A New Predicament for Physicians: The Concept of Medical Futility, the Physician’s Obligation to Render Inappropriate Treatment, and the Interplay of the Medical Standard of Care, 9 J.L. & HEALTH 69, 87 (1995).
5. CAL. P ROB. CODE §§ 4600–4740 (West 2000).
7. Many of the same provisions were previously located in various sections of California’s Probate, Health, and Civil codes.
8. See Marshall S. Zolla & Deborah Elizabeth Zolla, Lasting Wishes: California’s New Health Care Decisions Law Smooths the Procedural Path for Those Who Wish To Control Their Medical Treatment in Their Last Days, L.A. LAW., Dec. 2000, at 42. See also Lewis, supra note 1, at 507–08.
9. Natural Death Act, ch. 1439, 1976 Cal. Stat. 6478 (enacting CAL. HEALTH AND SAFETY CODE § 7188 (repealed 2000)).
10. Act of Sept. 29, 1983, ch. 1204, 1983 Cal. Stat. 4610 (enacting CAL. CIV. CODE §§ 2430– 2503.5 (repealed 1994)).
2002] FUTILITY AND THE UHCDA 1219 Since the high-profile case of Karen Ann Quinlan in 1976, the right to privacy has been read to include the patient’s right to have life-sustaining treatments withdrawn. 11 Over the intervening twenty-five years, the right of patients to refuse medical care has become firmly entrenched. Today, all states have laws enabling patients to refuse medical care.12 While the standards of proof required to demonstrate patient intent differ, all states allow for advance directives, allowing patients to determine in advance the course of their treatment should their decisionmaking capacities become diminished. 13 The line of cases and commentaries establish a right of selfdetermination, meaning that patient choice has become central to medical decisionmaking.
As patients’ rights to determine treatment solidified, more extreme requests, such as those for assisted suicide, became more prevalent.
Similarly, there was a reversal in the dynamic of the application of lifesustaining treatments. Where paternalistic physicians once sought to push the frontier of their faith in science by applying every means possible, now autonomous patients are the ones who may request every life-sustaining procedure. For example, in 1991, the family of an eighty-seven year old Minnesota woman insisted on every means necessary to preserve her biological functioning. 14 Despite some efforts by the hospital to transfer the patient or usurp the decisionmaking power of the family, the court seemingly affirmed the right of the patient and dictated the treatment that was deemed medically inappropriate.15 In the decade following this decision, numerous commentators have grappled with the moral position of the physician faced with a futile request. Few judges, however, have been faced with these problems and few states have passed legislation addressing this situation. 16 No clearly
11. See In re Quinlan, 355 A.2d 647, 662–63 (N.J. 1976), cert. denied, Garger v. New Jersey, 429 U.S. 922 (1976).
12. See Levine, supra note 4, at 71.
13. See Bretton J. Horttor, A Survey of Living Will and Advanced Healthcare Directives, 74 N.D.
L. REV. 233, 233 (1998).
14. In re Wanglie, No. PX-91-283 (Minn. Dist. Ct. 1991), reprinted in 2 BIOLAW § 12-6 (James F. Childress & Ruth D. Gaare eds., Aug.-Sept. 1991 Update).
15. See id. In Wanglie, the family of an eighty-seven-year-old woman sought to continue aggressive treatment against the advice of physicians. The physicians considered continued treatment medically ineffective. In an effort to circumvent the family’s wishes, the hospital sought to appoint a conservator to replace Wanglie’s husband. The court rejected this attempt and required continued treatment pending ultimate resolution. Wanglie died three days after the decision, preventing further litigation and resolution. It is not clear that this decision required continuing futile care in perpetuity. It does affirm that the family should be considered the best conservator rather than a physician or impartial third party.
16. See, e.g., MD. CODE ANN., HEALTH –GEN. I §§ 5-601 to 5-608 (1998); VA. CODE ANN. § 54.1-2990 (Michie 1998).
1220 SOUTHERN CALIFORNIA LAW REVIEW [Vol. 75:1217 delineated approach has been adopted under the law, meaning there is little explicit legal guidance for futility. Absent factual development, all legislative efforts have also failed to account for the complexity of futility.
Specifically addressing futility, the UHCDA enumerates two situations in which physicians can decline to comply with an individual’s or surrogate’s health care decisions. 17 First, health care providers can decline for personal reasons of conscience.18 Second, physicians can decline because the treatment would be medically ineffective in their opinion. 19 The nexus of these the two situations, one moral and one technical, encapsulates and attempts to address the concept of futility.
Futility is not merely a technical decision, but a complex moral decision that is based upon a very individualized decision. While continuing life support for one person may serve a legitimate goal for both physician and patient, doing so may not for another with the same disease or disorder—but in a different context. The same facts may require different results. The challenge for the law governing such disparate decisions is to guide important life and death decisions while respecting divergent results. Developing such a framework requires a unique balancing of law and moral structures—one that enables the participants in such a decision to have their interest, expertise, and goals fairly represented.
Despite the seeming surety of the UCHDA’s pronouncement that “medically ineffective” treatment can be withheld or withdrawn, the statute provides no clear standard regarding the propriety of such decisions.
Matters of ethics and technical judgments generally merge in the delivery of medical care, and do so even more in end-of-life decisions. 20 The UHCDA provides a mere framework for medical actions along with the legal consequences of and enforcement mechanisms for those actions. It does not, however, provide a clear definition of futility and fails to supply adequate ethical context or constraints to guide difficult decisions. Rather, the law consolidates previous statutes and codifies a common law tradition that gives only broad platitudes to health care providers in the context of patient requests to withdraw treatment. While unable to provide a
17. For the purposes of this Note, I focus my examination on individuals, rather than institutions.
The provisions that apply to individuals apply in similar fashion to institutions, with some minor differences. My focus on individual physicians adequately reveals the moral and legal issues salient for this preliminary consideration.
18. CAL. P ROB. CODE § 4734 (West 2000).
19. Id. § 4735.
20. See Levine, supra note 4, at 75–76. The issue of the inability to separate technical and moral judgments is discussed further herein. See discussion infra Part III.
2002] FUTILITY AND THE UHCDA 1221 definitive answer to moral dilemmas of physicians faced with futility, a close examination of the UHCDA and its foundations can provide the preliminary outlines of a more conceptually rich approach.
This Note suggests that California’s UHCDA adopts a process-driven approach to deciding end-of-life decisions. Rather than focusing on the virtue of a physician, deferring to the demands of a patient, mechanically relying on a contractual relationship, or adopting a strict rule-like approach, the UHCDA adopts a step-by-step process to allow a person to withdraw from treatment. It allows a physician to end treatment unilaterally, but still attempts to acknowledge the legitimate differences in the ethical interpretation of withdrawing treatment. It allows both the technical and moral differences of physician and patient to enter into the decision process.
The UHCDA attempts to address end-of-life judgments and physician conscience and morality. 21 These sections seemingly create an open-ended excuse for a physician to withdraw treatment for any moral or technical reason. From the UHCDA and its precedents, however, we can infer the moral framework that informs the law and guides decisions. Furthermore, there are numerous ethical constraints, judicial or otherwise that restrain medical decisions beyond the statute. While justifiably creating space, the UHCDA falls short of complete resolution by failing to account adequately for some of the ethical developments in the legal-medical field over the past twenty-five years. By focusing exclusively on the rights and duties identified in the 1970s and 1980s, the ethical tools provided in the patient autonomy movement do not fully meet the challenge of futility.
If we can discern the ethical position codified in the UHCDA, we can uncover the moral assumptions adopted in the law. These assumptions reflect the contemporary challenge of futility. The past position can be stretched to explore the ethical and legal dialogue surrounding the ethical integrity of the medical profession and questions of the boundaries of endof-life decisions. A critical reading of the law can provide some suggestions as to ethical positions that circumscribe the zone of ambiguity within which doctors can exercise discretion. Nevertheless, the law fails to incorporate some clear steps that could better support some of the best ethical processes enabling a clearer, more complete moral arena within which physicians should make decisions about futility.
In order to accomplish this, I will contextualize within four common ethical positions adopted in medical decisionmaking. The goal in doing so
21. See CAL. PROB. CODE §§ 4734–35 (West 2000).
1222 SOUTHERN CALIFORNIA LAW REVIEW [Vol. 75:1217 will be to reveal the moral positions assumed by the California legislature and to expose potential areas where the law falls short or contradicts a more fully developed and appropriate moral guide for medical decisionmaking.