The Family and the Patient's Best Interest: Reflections on Senate Bill 1069

Abstract

Michigan SB 1069 was designed to define and permit "Do Not Resuscitate" orders for patients in non-hospital settings. A review of the bill's history is presented, along with reflections on the family's role in treatment decisions. The question of whether public policy should be based on the expectation that a family will act in the patients best interest is discussed.

Key Words: family, resuscitation, non-hospital, legislation, decision making

1. Leonard J. Weber, Ph.D., is Director of the Ethics Institute and Professor of Ethical Studies at the University of Detroit Mercy, Detroit, Michigan, 48219.

 
Senate Bill 1069, the "Michigan Do-Not-Resuscitate Procedure Act," was introduced in the Michigan Senate in March 1994 by Senator John Schwarz. The bill was designed to permit the implementation of "Do Not Resuscitate" (DNR) decisions for patients in non-hospital settings and to define the procedure. The bill, after some revision, passed the Senate in May by a large majority. After passage in the Senate, additional attention was given to details of the bill. S. B. 1069 was not taken up by the House before the end of the legislative session and thus died. Senator Schwarz indicated that he planned to reintroduce the proposed legislation early in 1995.

As drafts of the bill were reviewed by various interested parties, it became apparent that a major issue was the question of who should be permitted to request a DNR status for a non-competent patient in a non-hospital setting. At the heart of the issue, it seems to me, is the question of whether public policy should be based on the expectation that a family will ordinarily be acting in the best interest of its incompetent member.

A brief review of the story of S.B. 1069 may provide an opportunity to reflect on the extent to which a family should be authorized or permitted to make treatment decisions that would permit an incapacitated patient to die without last minute efforts to save the life. What should the family's role in treatment decisions be and how should the family's role be delineated in good legislation?

The Background

The issue that S.B. 1069 was designed to address is one that has long been recognized as a major concern, in Michigan and around the country. While it has become common in health care institutions to make decisions not to attempt to resuscitate patients who are dying or irreversibly ill when their breathing stops, the normal understanding is that the DNR order does not apply to a patient outside the institution. If a patient outside the hospital or long-term care setting suffers an arrest and Emergency Medical Service (EMS) is called, the emergency personnel will normally make every effort to resuscitate, regardless of a patient's prior decision or a doctor's in-hospital order.

It has long been recognized that this practice poses a serious ethical problem. A patient's right to refuse unwanted medical treatment should not be placed in abeyance simply because the patient is in a setting where the health care providers do not have the established protocol for implementing that refusal. Perhaps EMS should not be called when a patient's death is expected and accepted, but often family, friends, or home health care aides do make the calls. The result is that patients and families who have made the difficult decision not to attempt to prolong life find that life-saving efforts are made nevertheless. The patient frequently dies anyway, but with less dignity. Many EMS personnel are also dissatisfied; they are expected to resuscitate in cases where they are not at all certain that a resuscitation attempt is the right thing to do.

Efforts have been made by some local medical control boards in Michigan to devise protocols to permit EMS in their districts to withhold cardio-pulmonary resuscitation (CPR) in certain cases. These protocols have not had strong support from the state Public Health Department, however, because of a concern that withholding resuscitation efforts may be in violation of the state-mandated legal responsibility the of Emergency Medical Service.

While Senate Bill 1069 was not the first legislative effort to address this issue, the support for such legislation seemed to be strong in 1994. There was widespread agreement that it is appropriate to implement DNR decisions outside the hospital in some situations, and that state law should recognize the legitimacy of these decisions and protect EMS from liability when acting in accord with established and approved policy. There was also widespread agreement on the need to solve the problem. Finding agreement on the precise nature of the legislation was, of course, something else.

Key Issues Regarding the Legislation

S.B. 1069, if passed, would have required that emergency medical personnel make no attempt to resuscitate someone who has no vital signs and does have a do-not-resuscitate order or a do-not-resuscitate bracelet. The requirement that there be a signed order not to resuscitate would remove the burden from technicians to try on the spot to ascertain a patient's advance directives or the family's interpretation of the patient's values. In the original draft, the do-not-resuscitate order could have been executed only by a competent, terminally ill patient and his or her physician.

Much of the discussion surrounding S.B. 1069 related to the question of who qualifies for a DNR order: whether it should be restricted to those who are terminally ill (expected to die within six months) and mentally competent to make treatment decisions for themselves. The requirement that a patient must be determined to be terminally ill seemed to be at odds with most of established policy and practice in health care. Hospitals and long-term care facilities now recognize a variety of situations in which a DNR order is appropriate, including many cases which do not meet the definition of terminal illness. The basis for a DNR order is the principle of informed consent: A patient's right to withhold consent from unwanted life-sustaining medical treatment is not restricted to the terminal condition. The terminal illness diagnosis requirement was removed from the bill in the early stages. Of course, it might reappear in the 1995 version.

The issue that seemed most central to the debate and the one that remained largely unresolved at the end of 1994 related to the question of the incompetent patient. By the time the bill passed in the Senate, requests for DNR orders could be made by competent persons for themselves; by a parent or guardian for a person who is a minor; or by a guardian or "patient advocate" (one who was given durable power of attorney for health care by the patient when competent) for an incompetent adult. The version of the bill that was submitted to the House committee had become more restrictive again, no longer permitting anyone to make an out-of-hospital DNR request for a child and permitting only a designated patient advocate to make such a request for an incompetent adult.

Consideration was given along the way to including the family or next-of-kin in the legislation, to permit them to request a DNR status for an incompetent adult in the absence of a legally appointed guardian or patient advocate. This policy would reflect in-hospital practice, where family members are routinely expected to speak for the incapacitated patient regarding treatment near the end of life. Consideration was given to this role for the family, but it was not included in any of the drafts of the 1994 bill.

The changing language in the section regarding who may speak for the patient reflects a fundamental issue raised by public policy questions of this sort: Should policy recognize family authority in decision making regarding the lives of their incapacitated members or should policy be written to protect the incompetent from abuse by their families? Or how should these two considerations be balanced?

The Family and Hospital Treatment Decisions

There is now a widely accepted set of ethics guidelines to be used in making treatment decisions for incapacitated or incompetent patients in this country. These guidelines were developed, it is worthy of note, in the context of hospital care. A brief review of these guidelines, especially as they apply to the role of the family in making treatment decisions, may be useful.

It is common in medical ethics to make a distinction between the incompetent person who was previously competent and the incompetent person who was never competent. For the previously competent, treatment decisions should be based on patients' beliefs and values while competent-a determination of whether patients would accept a proposed treatment if they could speak for themselves now. The best person to speak for the patient is, in this situation, a person who knows and is able to articulate the patient's beliefs and values. This is sometimes referred to as the "substituted judgment" principle. In the absence of advance directives from the patient, it is normal in these circumstances to turn to the family for assistance in determining what the patient would probably find acceptable in the present circumstances. In health care institutions, family members are usually permitted to decline even life-sustaining treatment efforts for previously competent patients, as long as there is no reason to think that the family is acting contrary to the patient's own expressed values.

If the patient has never been competent, has never been able to develop and express any adult beliefs that would affect treatment decisions, it makes no sense to pretend that one is speaking for the patient in the sense that one is interpreting the patient's own beliefs. Rather, a decision for the never competent is a decision regarding what is best for the patient, because we do not know what the patient would want. The "best interest" principle is to be implemented in these cases.

The basis for a best interest decision is significantly different from the basis for a "substituted judgment" decision. When the question is what the patient would want, those who know the patient well are key and those who do not know the patient personally have very little role in the decision making. When the question is what is best for the patient when all things are considered, there is much more justification for involving persons who may not know the patient personally. While the actual decisions that are made when applying the substituted judgment principle may vary significantly from case to case (because individuals do have different beliefs about acceptable treatment), the best interest principle should normally lead to similar decisions being made in similar cases.

Even in cases where the best interest principle must be used because the patient was never competent or nothing is known about the patient's values and beliefs, most medical ethicists defend a key role for family in making treatment decisions, especially when the family is responsible for providing care. Judgments about benefits and burdens for the patient need to be made in the context of the patient's whole life, not just on the basis of medical judgments about expected outcome. A family providing care is assumed to be committed to the welfare of its incapacitated member, unless there is evidence to the contrary. Treatment decisions contrary to what most caring persons would make should be questioned or challenged, but the starting point is the family's judgment regarding what is in the patient's best interest. The family has, therefore, a central and frequently decisive role to play in in-hospital treatment decisions for incompetent patients. Should non-hospital settings be any different?

The Family and Out-of-Hospital Treatment Decisions

There are, it seems to me, two major reasons why some key participants in the development of Senate Bill 1069 were reluctant to include incompetent persons among those who could receive out-of-hospital "Do Not Resuscitate" orders. The first is that the bill was modeled, in large part, after advance directive legislation rather than based on medical decision making procedures presently in place in health care institutions. Advance directive legislation is designed to provide a means for competent patients to make decisions for themselves, so it is not surprising that the use of this legislative model puts the emphasis on the execution of a document by a competent person. It is difficult to determine how important this legislative orientation was in shaping the details of the bill, but it probably had significant influence.

The second reason is the one that requires a little more attention here, because it raises basic questions about how we should view the relationship between the rest of the family and an incapacitated person. Some, including advocates for persons with disabilities, argued that it is not good public policy to assume that the family will act in the patient's best interest. Family members may be so affected by the burden associated with the care of someone with a chronic condition that their judgments regarding what is best for the patient are distorted. Others pointed out that family members are sometimes in a conflict-of-interest situation. They may be generally committed to what is best for an aging parent, for example, but they may also stand to benefit financially at the parent's death. Some are reluctant to assume that a family in these situations will be doing what is best for the patient when the patient cannot speak for self.

The concern expressed was that legislation that would permit family members to request that physicians sign DNR orders for out-of-hospital patients would open the door to abuses; it would permit families to allow a parent, a spouse, or a child to die when it might very well be in the patient's best interest for a resuscitation attempt to be made. It would allow judgments to be made for another about what kind of life is worth living.

According to individuals who expressed this view, the danger of such abuse is not nearly so great within the hospital. Where professionals are involved in the daily care of the patient, there is much less likelihood that a decision not to resuscitate will be made too quickly; the role of family members in refusing treatment for the incompetent patient is balanced by the professional commitment to doing what is best for the patient.

In response to the argument that legislation allowing out-of-hospital DNR orders for incompetent persons will permit medical neglect on the part of families and guardians, others made the point that not to allow such orders to be written is itself a form of patient abuse. It would require that EMS attempt to resuscitate, for example, a stroke patient who is irreversibly incapacitated simply because she had not appointed a patient advocate while competent. It would require that home health aides call EMS when a child with a fatal degenerative condition arrests at home.

Proponents of including incompetent patients in DNR legislation argue further that there is one protection against abuse built in, one that is essentially the same as that in place in hospitals. A DNR order must be signed by a physician, not simply by the patient or someone speaking for the patient (although a version of S.B. 1069 permitted exceptions for adherents of a religious denomination whose members rely upon spiritual means alone for healing). The physician should be expected to sign only when a DNR order is compatible with the patient's condition and standards of medical care and medical ethics. It should be noted, however, that the advance directive model used for the bill can make it seem that the order is written by the patient rather than by the doctor.

The Role of the Family in Good Legislation

Those of us who come to this legislative issue with experience in addressing end-of-life treatment decisions in health care have our own perspectives. When families make decisions to limit treatment for incompetent patients, they seem, in the vast majority of cases, to be acting in the patient's best interest. Further, when patients are treated in ways that seem abusive, it is more likely to be a case of overtreatment than of undertreatment. From this perspective, it seems to be entirely unsatisfactory to refuse to permit families to make decisions regarding out-of-hospital DNR orders for incompetent patients.

Those professionals who approach this legislative issue from experience gained in protective and advocacy service on behalf of persons with disabilities also bring particular perspectives. Family members are, in their experience, not always to be counted on to act in the best interest of the incompetent member, especially if that person is, in some sense, a burden to the family. From this perspective, it seems entirely unsatisfactory to allow family members to make do-not-resuscitate decisions for incompetent patients outside the hospital.

The discussion about the appropriate role of families in these situations is likely to continue, in Michigan and elsewhere, even if some version of the Do Not Resuscitate bill is passed in 1995. As the discussion continues, there are two important efforts that I would like to see all involved in the debate make: The first is the effort to listen to and take other perspectives seriously. Those concerned primarily about protecting patients from nonbeneficial or unwanted medical treatment and those concerned primarily about protecting the persons in our society who are most susceptible to neglect or abuse would seem to have enough common ground on which to build a legislative approach that addresses both concerns. Often, however, representatives of these perspectives have difficulty in reaching agreement.

Secondly, there is a need to enlarge the topic of conversation. What seems to be missing is careful reflection on the implications for the overall role of families in society. Advocates for patient rights and advocates for the handicapped should be in conversation with advocates for families. What types of policies and procedures on this issue would best serve to strengthen families in our society? Perhaps this question is on the minds of some of those involved in this discussion, but it has not appeared to be a major focus.

Although it has not always been recognized as such, the conversation and debate about "who can make out-of-hospital do-not-resuscitate decisions for whom" is part, perhaps a very important part, of a larger conversation and debate about the role of families in American society.

Reference

Michigan Do-Not-Resuscitate Procedure Act, S.B. 1069. (1994).