Tracy E. Miller

Center stage on the patient protection agenda: grievance and appeal rights.

esponding to mounting public concern about the shift to managed care, legislation to grant patient R protections has dominated the health policy agenda over the past two years. Although some policies, such as laws on maternity length of stay, can be easily dismissed as “body part by body part” micromanagement of medical practice, other initiatives offer substantive, new rights to patients across the spectrum of care.’ At both the state and the federal levels, the right of enrollees to appeal a denial of treatment or to file grievances about other plan decisions has emerged as a centerpiece of patient protection legislation. Grievance and appeal rights have been embraced as a way to empower patients, to enhance access to treatment, and to improve the quality of care by providing an external mechanism to review treatment denials. In the evolving health care delivery system, grievance and appeal rights offer an increasingly important avenue for access to treatment not yet rendered or to reimbursement for treatment already provided. Enrollees who can afford higher deductibles or full payment for treatment outside a plan’s network of covered providers or services can obtain treatment that has been denied by a primary care gatekeeper or managed care plan. In decreasing numbers, enrollees can also change plans or return to fee-forservice (FFS) if treatment is denied. However, many enrollees have no choice of plan and cannot afford out-ofnetwork care. As commentators have noted, even for enrollees who can switch plans, the option to “exit” is a poor solution.2 Changing plans may force patients to sever longterm provider relationships and does not address shortcomings in the quality of care. Spurred by state initiatives and litigation about Medi-

Net effect: professional and ethical challenges of medicine online.

From computerized medical records to databases of pharmacological interactions and automated provisional EKG readings, the emergence of information technology has significantly altered the practice of medicine. Information technology has been widely used to enhance diagnosis and treatment and to improve communication between providers. The advent of the Internet also brings far-reaching implications for patient–physician communication, challenging physicians, patients, and policymakers to consider its impact on the delivery of medical care and the therapeutic relationship. A new set of practices by patients and physicians is unfolding in cyberspace, ranging from the use of e-mail to communicate between physicians and patients in an existing relationship to one-to-one consultations with an anonymous physician and ongoing online treatment, such as psychotherapy. These practices are emerging in both the for-profit and not-for-profit spheres.

Moral and religious objections by hospitals to withholding and withdrawing life-sustaining treatment

A patients right to decide about life-sustaining treatment may conflict with the policies of health care facilities that refuse on the basis or religious or moral convictions to honor certain decisions to forgo treatment. The New York State Task Force on Life and the Law examined the prevalence and nature of facility conscience objections to the refusal of life-sustaining treatment by conducting a survey of New York hospitals. Written questionnaires were distributed to hospitals in New York State. Fifty-eight percent of the New York State hospitals responded. Twenty-nine percent of the respondents indicated that their hospital would object on grounds of conscience either to withholding or to withdrawing life-sustaining treatment in at least one of the twelve hypothetical cases presented. Hospitals were more likely to have “no policy” for withdrawing than for withholding treatment. Only 10% of the hospitals that would object to decisions to forgo treatment on religious or moral grounds had stated the objections in writing. The patients medical condition and the type of life-sustaining treatment to be withdrawn or withheld are important factors in determining whether a hospital will object on grounds of conscience. The imminence of death appeared more decisive than the degree of debilitation or disability as a factor in the willingness to accept decisions to forgo life-sustaining treatment. Hospitals should establish clear, written policies about their objections to forgoing treatment so that patients and their families can evaluate whether the facility meets their needs.A patients right to decide about life-sustaining treatment may conflict with the policies of health care facilities that refuse on the basis or religious or moral convictions to honor certain decisions to forgo treatment. The New York State Task Force on Life and the Law examined the prevalence and nature of facility conscience objections to the refusal of life-sustaining treatment by conducting a survey of New York hospitals. Written questionnaires were distributed to hospitals in New York State. Fifty-eight percent of the New York State hospitals responded. Twenty-nine percent of the respondents indicated that their hospital would object on grounds of conscience either to withholding or to withdrawing life-sustaining treatment in at least one of the twelve hypothetical cases presented. Hospitals were more likely to have “no policy” for withdrawing than for withholding treatment. Only 10% of the hospitals that would object to decisions to forgo treatment on religious or moral grounds had stated the objections in writing. The patients medical condition and the type of life-sustaining treatment to be withdrawn or withheld are important factors in determining whether a hospital will object on grounds of conscience. The imminence of death appeared more decisive than the degree of debilitation or disability as a factor in the willingness to accept decisions to forgo life-sustaining treatment. Hospitals should establish clear, written policies about their objections to forgoing treatment so that patients and their families can evaluate whether the facility meets their needs.

Do-Not-Resuscitate Orders: Public Policy and Patient Autonomy

The issuance of do-not-resuscitate orders was one of the first dilemmas scrutinized by lawyers, health care professionals and philosophers in the field of bioethics. In 1983, the President’s Commission articulated the basic principles that should guide decisions about CPR: respect for the choices of patients capable of deciding for themselves, recognition of family members as appropriate surrogates for decisionally incapable patients and the importance of an open dialogue with the physician as a predicate to informed consent.’ Six years have passed since the President’s Commission issued its landmark report. More than a decade of discussion and written commentary has clarified the ethical and social questions presented by resuscitation decisions. In many states, judicial decisions and legislation have addressed some of the legal uncertainties associated with do-not-resuscitate (DNR) orders.* Nonetheless, the gulf between recognized ethical principles and clinical practice remains broad and resistant to change. Nowhere is this gap more evident than in decisions about cardiopulmonary resuscitation (CPR) for competent patients. Despite widespread recognition of the principle of informed consent, studies conducted since 1984 have consistently demonstrated that hospital patients, even those fully capable of deciding about resuscitation, are often not consulted in the decision-making p r o ~ e s s . ~ A recent review of decisions about CPR in long-term care showed that the problem is even more pervasive in that setting; of 192 competent residents, only 8 percent had ever been asked to decide about resuscitation.4 As demonstrated by other studies, health care facilities have been slow to take measures that would enhance the patient’s role in deciding about CPR. For example, the adoption of explicit policies has been widely endorsed as a way to prevent arbitrary decisions and protect a broad range of patient interests, including the right to participate in the d e ~ i s i o n . ~ Nonetheless, in 1986, when the Joint Commission on Accreditation of Hospitals conducted a national study of health care facilities, it found that only 30.7 percent of all health care facilities had a formal policy (a written policy approved by i:he trustees or other governing board), 28 percent had informal policies, while 41.3 percent had no policy whatsoever.6 Hospitals (56.9 percent) were most likely to have policies, but the prevalence of the policies was still surprisingly low given the frequency of resuscitation decisions (explicit or implicit) in this setting and the wealth of information available in the medical and ethical literature about DNR orders. In the wake of highly publicized problems associated with DNR orders in New York state in 1985, Governor Cuomo asked the newly created Task Force on Life and the Law to explore the social and ethical issues posed by resuscitation decisions and to recommend policy for the state. After a year of deliberation, the Task Force proposed legislation that embodied concrete solutions to many of the dilemmas that arise in deciding about resuscitation.’ Although motivated by the need to authorize third party decisions about CPR on behalf of incompetent patients, the Task Force’s legislative proposal was also designed to enhance the rights and interests of competent patients by ensuring their participation in the decision. This article describes the confusion and concerns surrounding the use of DNR orders that led to the Task Force’s involvement and its choice of a legislative solution. It then discusses the Task Force’s recommendations, focusing on policies that delineate the role of competent patients: (i) the balance struck between the patient’s right to decide and other interests; (ii) informed consent requirements and the breadth of any ex ceptions permitted; and (iii) the determination of decision-making capacity. Some preliminary observations about how these proposals have fared in practice are also set forth, based on the first eight months of experience following implemen-

Stemming the Tide: Assisted Suicide and the Constitution

n November 8,1994, Oregon became the first state in the nation to legalize assisted suicide. Passage 0 of Proposition 16 was a milestone in the campaign to make assisted suicide a legal option. The culmination of years of effort, the Oregon vote followed on the heels of failed referenda in California and Washington, and other unsuccessful attempts to enact state laws guaranteeing the right to suicide assistance. Indeed, in 1993, four states passed laws strengthening or clarifying their ban against assisted suicide.’ No doubt, Proposition 16 is likely to renew the effort to legalize assisted suicide at the state level. The battle over assisted suicide is also unfolding in the courts. Litigation challengmg Proposition 16 on the grounds that it violates the equal protection clause is ongoing in Oregon.2 More significantly, three cases, two in federal courts and one in Michigan state court, have been brought to establish assisted suicide as a constitutionally protected right. These three cases have yielded important rulings that foreshadow the ultimate resolution of this issue by the United States Supreme Court. The federal lawsuit challenging Washington State’s law barring assisted suicide as unconstitutional, Compassion in Dying v. State of Washington, resulted first in a much-publicized district court ruling striking down the law.3 O n March 9, 1995, the United States Court of Appeals for the Ninth Circuit overturned that decision, holding that a right to assisted suicide is not protected by the United States Con~titution.~ In a similar lawsuit challenging New York‘s laws prohibiting assisted suicide, Quill v. Koppell, the district court upheld the statutes, dismissing the lawsuit after a preliminary hearings The Michigan Supreme Court decision was a consoli-

Public Policy In the Wake of Cruzan: A Case Study of New York's Health Care Proxy Law

O n June 25,1990, seven years after Nancy Cruzan lapsed into permanent unconsciousness following a car accident, the United States Supreme Court handed down its landmark decision in Cruzan v. Director, Missouri Department of Health. The decision provided the Court’s first ruling on the right to forgo life-sustaining treatment, addressing both the right of individuals to decide for themselves and the right of family members to decide on their behalf.’ Inextricably linked to the Court’s holding on individual rights were questions about the authority and responsibility of each state to fashion policy for treatment decisions on behalf of incompetent patients. The Cruzun case presented an opportunity for the Court to comment upon and reshape the patchwork of laws that define the right to decide about life-sustaining treatment in states across the country. This article examines the implications of the Cruzan decision for public policy. It then discusses New York’s health care proxy law, enacted just six days after the Supreme Court handed down its decision in Cruzan. The analysis of New York’s proxy law focuses on issues central to recent debates about treatment decisions, including decisions about artificial nutrition and hydration, objections to treatment decisions by health care professionals and institutions on grounds of conscience, and assisted suicide.