The judicial role in life-sustaining medical treatment decisions.

• Author: Hafemeister, Thomas L.

Abstract

Although there has been speculation regarding the pervasiveness and anture of judicial decisions regarding life-sustaining medical treatment (LSMT), no attempt has been made to empirically assess their prevalence or the tissues they address. An exploratory study utilizing a mail survey of a nationwide random sample (N = 905) of state trial court judges was conducted to provide initial information regarding this decision-making process.

Twenty-two percent of the responding judges had heard at least one LSMT case, and judicial review did not appear endemic to particular states. The number of judges hearing LSMT cases dropped from 1975 to 1981 but has increased since then. Three major issues predominate: patient competency, appointment of a surrogate decisionmaker, and resolution of the ultimate issue of forgoing LSMT. Relatively few cases either contested a prior directive's validity or involved imposing sanctions for instituting or forgoing LSMT.

Although subject to different interpretations, the results suggest the court are having a significant impact on certain aspects of the LSMT decision-making process. However, the infrequency with which any one judge is called upon to make an LSMT decision causes concern about the judiciary's ability to respond in a timely and appropriate manner. With their potential for a profound effect on the actions of health care provides, greater attention to this decesionmaking process is warranted.

Introduction

The legal, medical, and ethical aspects of the initiating, maintaining, and withdrawing of life-sustaining medical treatment (LSMT) are today matters of fierce debate. (1) Complex and controversial decisionmaking regarding LSMT--made possible by advances in medical science--confronts more health care providers today than in 1976, when the nation's attention was reveted on the case of Karen Ann Quinlan. (2)

However, while numerous commentators have discussed the appropriate medical standards and procedures that ought to be applied in resolving these matters, (3) the actual decision-making process utilized has received little study. And while the broad issues regarding LSMT continue to be played out in the nation's appellate courts in a relative few highly publicised and closely scrutinized cases, health care providers and trial courts must make a host of immediate, patient-specific decisions regarding this treatment.

The little empirical research that has been conducted on the LSMT decision-making process has focused on studies of (1) the attitudes of patients regarding LSMT; (4) (2) the role, use, and impact of ethics consultation services; (5) (3) hospitals' policies toward advance directives; (6) and (4) the attitudes, decision strategies, and experiences of physicians regarding LSMT. (7)

Yet one potential route for the LSMT decision-making process is the invocation of judicial review. However, this review has received virtually no empirical study. Routinely involving the judiciary in LSMT decisions could drastically alter the nature of these decisions and have a dramatic effect on the behavior of the concerned parties, in particular the relevant health care providers. Some courts and commentators have taken the position that court review of certain LSMT decisions is required even when there is general agreement among all parties over the proper course of treatment. (8) Others have argued that such review should be the rare exception, occurring only when serious disagreements arise among the parties or there is evidence of improper motives or malpractice. (9) Routine court review of LSMT decisions remains a controversial, unresolved issue. (10)

Although commentators have indicated that the courts are being increasingly asked to be a part of the LSMT decision-making process, (11) they have not provided data to substantiate these claims. Considerable attention has been given to those relatively few published judicial opinions regarding LSMT, (12) but such opinions typically contain the views of appellate court judges addressing the broad question of whether the law permits the withholding or withdrawing of LSMT. In addition, appellate opinions represent only a fraction of the total number of decisions rendered by the judiciary. Furthermore, they do not provide information on how frequently the courts are used as part of the LSMT decision-making process, how available they are to resolve disputes, under what circumstances their assistance is invoked, what their role has been, what kind of issues they are resolving, how they function within the overall decision-making process, and what is entailed by the "judicial process." Nevertheless, based on little else, the U.S. Supreme Court recently concluded that "cases involving the right to refuse life-sustaining treatment have burgeoned." (13) In contrast, at least two state courts have asserted that the judicial role is limited. (14)

Reliable information about the role of the courts is crucial in order to understand the LSMT decision-making process. This information will allow concerned parties, including the treating medical staff, to appropriately anticipate and plan for such a contingency. Such data are important for the medical profession since judicial LSMT determinations almost inevitably embroil judges in scrutinizing conclusions reached by health care providers, require health care providers to defend their conclusions before these tribunals, tend to pit medical professionals against one another, potentially undercut the ability of health care providers to develop and maintain rapport with their patients and the families/friends of their patients, may result in overly conservative decisionmaking to minimize future judicial scrutiny, and, at a minimum, deflect health care providers away from other duties. Furthermore, knowing how the decision-making process actually functions is a prerequisite for any indivudla or group that feels this process is in need of reform. In order to address these issues, we surveyed 905 state trial court judges to determine: (1) if they had heard an LSMT case; (2) how many of these cases they had heard; (3) which courts were more likely to be presented with LSMT cases; (4) whether the role of the courts changed over time; and (5) what the general nature of the issues raised in these cases was.

Methods

In November 1989, questionnaires were mailed to a random sample of state trial court judges (N = 905). The names of the judges were drawn from a comprehensive list, maintained and periodically updated by the National Center for State Courts, including all 10,944 general and limited jurisdiction state trial court judges in the country. The list's inclusiveness compared favorably with the two other predominant lists of state trial court judges available (data not shown). A systematic (random) sampling technique (15) was used to select the names. The resulting sample included judges from forty-nine of fifty states, plus the District of Columbia and Puerto Rico (the sampling process did not include any judges from Wyoming).

The questionnaire used an adaptation of a well-recognized definition of LSMT. It read in part:

'Life-sustaining treatment' has been defined as 'any medical intervention that is administered to a patient in order to prolong life and delay death.' This includes any medical intervention, technology, procedure, or medication administered to a patient in order to forestall the moment of death. . . . This definition is not limited to patients who are terminally ill or imminently dying, but includes a broad class of gravely impaired or critically ill patients and others who are not necessarily in danger of imminent death. (16)

In order to maximize response rate, the questionnaire was kept as brief as possible. In addition to very basic demographic information, the questionnare asked judges to note the total number of LSMT cases they had heard and the year(s) in which they had heard them. Judges who indicated they had heard at least one LSMT case were asked to complete additional questions, including whether the case(s) they had heard were similar to any of fourteen given examples, primarily taken from published judicial opinions, calling for a judicial resolution of issues pertaining to LSMT. In addition, they were asked to describe briefly any LSMT case they had heard that was not identified by the given examples. Two weeks after the mailing of the survey, a follow-up postcard reminder was sent to those judges who had not yet responded.

Of a sample population of 895 judges (ten potential respondents were excluded because they had retired or died, or the survey was returned undelivered), a total of 384 (42.9%) responded to the questionnaire, a response rate comparable to that achieved in other surveys of this genre. (17)

Comparing respondents with those who did not respond along those variables that were available for comparison, the most noteworthy difference in response rates was found for judges in general jurisdiction courts (288 of 616), who...