Guidelines for state court decision making in life-sustaining medical treatment cases.

• Author: Hafemeister, Thomas L.

Need for and Inception of Project

Only twenty-five years ago, a decision regarding life-sustaining medical treatment (hereinafter LSMT) (2) was the exclusive province of the patient, (3) the patient's family, and the treating physician. This began to change when the New Jersey Supreme Court handed down the first judicial "right-to-die" opinion in 1976, in the well-known case of Karen Ann Quinlan. (4) The extensive publicity attendant upon this and ensuing cases has sometimes made it seem that the courts have become the primary decision makers in such matters. A series of appellate court opinions have been issued, (5) generally preceded by great anticipation and followed by close review and scrutiny. When the U.S. Supreme Court issued its opinion in Cruzan v. Director, Missouri Department of Health, (6) this growing national attention to judicial opinions regarding LSMT reached new heights. (7)

Ironically, during this same time, many courts issuing such opinions took great pains to limit the role of the judiciary in making LSMT decisions and explain why they felt a greater role for the judiciary was inappropriate. In general, they argued that LSMT decisions are inherently private medical decisions and are best resolved through discussions among the treating physician, the patient, and the family and friends of the patient. (8) Typically, these courts considered judicial intervention appropriate only as a matter of last resort when there are irreconcilable differences between the decisionmakers.

However, little is known about the role of the courts in the LSMT decision-making process. Limited insight has been provided on how frequently courts are called upon to resolve LSMT cases, what kind of issues are raised in the course of these cases, what kinds of difficulties they face in resolving such cases, how they feel about these cases, or what steps courts can and should take in order to handle these cases appropriately. (9)

In order to begin to address these issues, the Natioanl Center for State Courts undertook a two-year project to determine the role of the courts in the LSMT decision-making process and to generate guidelines to assist state court judges asked to review or make decisions involving the authorization or forgoing of LSMT. The project is known as the Decision Making Regarding Life-Sustaining Medical Treatment Project (hereinafter DRLMT). Support was provided by a grant from the State Justice Institute. The initial impetus for undertaking the project was provided by the Conference of Chief Justices (hereinafter CCJ) through its Committee on Decisionmaking on Authorizing and Withholding Life-Sustaining Medical Treatment, which passed a resolution after considerable deliberation and study stating that there was a need to explore and develop principles and practical guidelines for judicial decision making in LSMT cases.

Coordinating Council on Life-Sustaining Decision Making

and Project Staff

This project relied heavily on a twelve-member, multidisciplinary advisory body, the Coordinating Council on Life-Sustaining Decision Making (hereinafter Coordinating Council).

The Coordinating Council was chaired by the Hon. Douglas K. Amdahl, Chief Justice of Minnesota (retired), with Hon. Sol Wacthler, Chief Judge of New York, vice-chair. Three other judges, all trial judges, were also involved: the Hon. Robert C. Bibb, from the Washington Superior Court, Snohomish County; the Hon. Hilda R. Gage, from the Michigan Circuit Court, Sixth Judicial Circuit, Pontiac, Michigan; and the Hon. Francis G. Poitrast, Chief Justice of the Juvenile Court Department in Boston, Massachusetts.

The other members of the Coordinating Council represented a wide range of disciplines and expertise. They included Professor Alexander Capron, professor of law and medicine, University of Southern California Law Center; Joan McIver Gibson, Ph.D., senior program director, Center for Health Law and Ethics, Institute of Public Law, School of Law, University of New Mexico; Joanne Lynn, M.D., director of the Division for Aging Studies and Services at George Washington University in Washington, D.C.; Christine Mitchell, M.S.N., ethics consultant at Boston Children's Hospital; John H. Pickering, Esg., from the firm of Wilmer, Cutler, and Pickering in Washington, D.C., and chair of the ABA Commission on Legal Problems of the Elderly; Rita G. Stratton, the manager of education services for the Kennedy Administrative Office of the Courts and president of the National Association of State Judicial Educators; and Susan M. Wolf, Esq., associate for law at the Hastings Center in Briarcliff Manor, N.Y.

Ronald E. Cranford, M.D., served as project consultant. Dr. Cranford is associate physician in neurology at the Hennepin County Medical Center, Minneapolis, associate professor of neurology at the University of Minnesota, chair of the Ethics and Humanities Committee of the American Academy of Neurology, and past president of the American Society of Law and Medicine.

Project staff consisted primarily of the author as project director; Ingo Keilitz, Ph.D., Director of the Institute on Mental Disability and the Law; Donna M. Robinson, J.D., research associate; and Brenda W. Jones, executive secretary.

The Coordinating Council, the project consultant, and project staff held a series of meetings in order to devise the guidelines. To support their efforts, as described below, the project staff undertook several tasks designed to compile and distill information currently available about state court LSMT decision making and made this information available to the Coordinating Council and the project consultant in a series of briefing papers. Efforts were made to compile and stay abreast of developments in the case law and statutory enactments concerning LSMT. The print media was searched for articles describing judicial involvement in decisions regarding LSMT. A continuing review of scholarly journals and professional guidelines was conducted in order to discover relevant materials on LSMT and to compile facts, issues, procedures, and practices that are relevant to trial courts' decision making in these cases. In addition, in order to ascertain the impact of these cases more accurately, the project staff conducted two surveys of the nation's state trial court judges and a survey of the nation's state medical associations. The guidelines themselves were developed and revised by the Coordinating Council with assistance from the project consultant and project staff over the course of the project. In addition, comments on the guidelines were solicited from a number of individuals and organizations with expertise and interest in the subject matter.

Empirical Base

Case and Statutory Review

Since the issuance of the Quinlan, opinion in 1976 by the Supreme Court of New Jersey, (10) until April of 1991, one hundred additional published final judicial LSMT opinions were issued. (11) Opinions were published in twenty-three states; there were five final federal court opinions and one by the court system of the District of Columbia. The nature of these cases varied widely. For example, the cases addressed issues ranging from the substantive question of whether LSMT should be forgone (12) to whether attorneys' or guardian and litems' fees should be awarded. (13) Both civil (14) and criminal actions (15) were filed. Some cases discussed whether an individual could forgo LSMT, (16) while other cases have focused on the ability of a substitute decision maker to make that decision. (17) The age of the individual for whom it was proposed to forgo LSMT ranged from infancy (18) to more than ninety years of age. (19) Numerous types of treatment were at issue, although more recent cases focused on artificial nutrition and hydration. (20) The individual's medical condition, cognitive capacity/competence, and expression of treatment wishes all varied considerably. The limited number of states in which there are published opinions suggests that in most jurisdictions the legal issues associated with an attempt to forgo LSMT have not been resolved, nor has the procedural route by which these matters should be settled been established. Even in those jurisdictions where a published opinion does exist, the assortment of legal issues and fact patterns raised suggests that numerous legal and procedural questions remain.

An alternative means for resolving such questions is for the respective state legislatures and/or Congress to enact statutes that address them directly. Indeed, often courts in their LSMT opinions have strongly encouraged their legislatures to take such steps. (21) To a certain extent, the legislatures have responded. For example, most states and the District of Columbia have statutes authorizing living wills. (22) In addition, the United States Congress attached a bill (the Patient Self-Determination Act) to the 1990 budget reconciliation measure that requires health care facilities (as of December 1, 1991) that are federally funded (e.g., those hospitals that participate in Medicare or Medicaid) to provide written information to patients upon admission of their rights under state law to accept or reject medicl treatment and to formulate advance directives, and to document in a patient's medical record whether that individual has executed an advance directive such as a living will. (23)

However, the usefulness of living will statutes is somewhat limited in that the execution of the provisions of a living will is restricted to situations when the individual's condition is terminal. In addition, some living will statutes specify that food and fluids cannot be forgone as part of this process. Also, although living wills are often crafted to be relatively broad in their scope, to the extent they are limited to a prescribed set of circumstances, they do not provide assistance or direction on the proper steps to take when the patient faces a set of circumstances not...