December 1991 XIII/4
ENLIGHTENED LEGISLATION: ETHICAL CONSIDERATIONS
On August 2, 1988, 6 month old Sammy Linares swallowed a deflated balloon. The upper airway obstruction resulted in respiratory failure and cardiac arrest. Sammy had no vital signs for about 20 minutes, but a normal cardiac rhythm was established at a neighborhood hospital. Transferred to Presbyterian-St. Luke's Medical Center in Chicago, life support systems were maintained even after he was diagnosed as being in a persistent vegetative state. When his father Rudy Linares requested that his son be removed from life support, the physicians acting upon the advice of hospital attorneys stated that life support could not be removed unless the family obtained a court order justifying such an action. As is well known, on April 26, 1989, Rudy Linares held off health care workers with a handgun, disconnected Sammy from the respirator and held him in his arms until he died. As a result of the legal and ethical furor surrounding the Linares case, the legislature of the state of Illinois recently passed a bill which allows life support to be withdrawn from incapacitated persons at the request of a surrogate without a court order. In this essay, we shall consider the ethical substratum for the new legislation, as well as some ethical issues which will arise in its implementation.
The Health Care Surrogate Act was signed into law on September 26, 1991, by the Governor of Illinois. In sum, the new legislation is a response of several medical, legal, and social service organizations to the ethical and legal anomalies demonstrated in the Linares case. While the new law states clearly that both patients with decisional capacity as well as patients without decisional capacity may have life support removed "without judicial involvement of any kind", the major part of the legislation concerns decision making for persons without decisional capacity. .We shall concentrate on the sections of the new law devoted to surrogate decision making for persons incapable of making health care decisions for themselves.
One of three conditions must be verified by two physicians before a surrogate may determine that life sustaining treatment should be withheld or withdrawn from an incapacitated person. These conditions are:
a) imminent death; that is, when death is inevitable within a short time, "even if life sustaining treatment would be initiated or continued,"
b) permanent unconsciousness, for which initiating or continuing life support, in light of the patient's medical condition, provides only minimal medical benefit,
c) incurable or irreversible condition that imposes severe pain or an inhumane burden, that will ultimately cause the patient's death and for which initiating or continuing life sustaining treatment provides only minimal medical benefit.
The new legislation, which may not be invoked if the patient has an operative living will or Durable Power of Attorney, lists the order in which a surrogate should be recognized, the legal guardian, the spouse and other family members being given priority. Finally, the act exonerates surrogates, physicians, and other heath care providers from legal liability when they follow "with due care" the stipulations of the legislation.
Several ethical principles, while not mentioned explicitly in the bill, are the substratum for the legislation. In order to understand the ethical validity of this legislation, these principles should be considered.
a) The ethical responsibility to prolong the life of an incapacitated person ceases when the life support will not benefit the patient. Removing life support when it is no longer beneficial for the patient does not "cause" the patient's death in the moral or ethical sense. The erroneous tendency to equate "causing death" in the ethical sense with the physical removal of life support has been evidenced in many court decisions, especially in the decision of the Missouri Supreme Court in the Cruzan Case. The Illinois legislation explicitly states that it is "not intended to condone, authorize or approve mercy killing or assisted suicide", but does not define the difference between the actions approved by the bill and mercy killing. In order to differentiate between mercy killing and allowing to die, the ethical reasoning which allows withholding or withdrawing life support must be understood.
b) Sustaining the physiological function of people when cognitive-affective function cannot be restored is not a benefit for persons in a state of permanent unconsciousness. This common sense conclusion has been denied by those who would allow withdrawal of life support only when death is imminent, i.e., death cannot be avoided even if life support is utilized. Most people who are permanently unconscious are not in danger of imminent death because life support can continue their existence in this debilitated condition indefinitely.
c) Artificial hydration and nutrition, is judged by the same ethical norms as all other life sustaining treatment. Thus, the long debate concerning the ethical evaluation of the use of artificial hydration and nutrition seems to be near a close. The fact that the Catholic Conference of Illinois promoted and supported this legislation is strong evidence, together with approval of DPA's by the Catholic Conferences in other states, that the Catholic tradition in regard to withdrawal of life support allows the same ethical norms to be applied to artificial hydration and nutrition as to other forms of life support.
d) Life support may be withheld or removed if the patient suffers from an incurable or irreversible condition which will ultimately cause death and which imposes severe pain or an inhumane burden. There has been some discussion whether this "condition" applies to persons with ALS, MS or Alzheimer's disease. From the wording of the legislation, it seems that this "condition" does pertain to aforementioned patients because the "severe pain or inhumane burden" is the result of the illness in question and not the result of the treatment for the illness. If a patient with one of these chronic fatal pathologies is declared incapable of medical decision making, it seems the surrogate may ask that life support be withheld or withdrawn because it is of little medical benefit when compared to the "inhumane burden" imposed by the illness on the patient. Ethically speaking, it seems the illness as well as the therapy may be taken into consideration when determining "severe pain or inhumane burden. All would not agree with this conclusion. Undoubtedly, this "condition" of the legislation will cause greater controversy than the other two.
There are two ethical issues involved in the execution of the law which merit explicit consideration. 1) The act requires that the surrogate make his or her decision concerning the use of life support "in consultation with the attending physician. This requirement demonstrates that the physician is much more than a puppet or bystander in the decision making process. The surrogate cannot possibly make an ethical decision without having some idea of the potential outcome of various therapies. Hence, the ethical responsibility of the physician must be emphasized, as well as the ethical right of the surrogate. 2) It seems that this legislation, as do most legal statements, confuses the primary responsibility of the surrogate. The act states "that the surrogate shall make decisions for the adult patient, conforming as closely as possible to what the patient would have done or intended under the circumstances. Hence, the legislation indicates that the surrogate should make decisions based upon substitute judgment. "Only when the adult patient's wishes are unknown and remain unknown, or if the patient is a minor, may the surrogate make a decision upon the basis of patient's best interest. However, it seems that the primary moral responsibility of the surrogate is to make a decision in best interest of the patient, no matter what the patient may have said beforehand. While this conclusion is not shared by all ethicists, and by few lawyers, it seems valid for two reasons: a) the notion that the patient's prior wishes would be able to envision all present circumstances is unrealistic. Substitute judgement is a legal fiction; attributing to it the place of prominence in surrogate decision making leads to contradictions such as those contained in the Cruzan decision of the Missouri Supreme Court; b) the right and responsibility of family members to act as surrogates for their loved ones is not bestowed by the civil law; rather it follows from our relationship as human beings. True, the civil law may legitimately regulate and facilitate this right of surrogate decision making, but it does not bestow this right. When one makes a health care decision for a loved one the statements and wishes of the loved one should be considered by the surrogate. But these wishes serve only to indicate the best interest of the patient. They do not serve as an ineluctable mandate which must be followed passively by the surrogate even in the face of evidence which would indicate that substitute judgement is not in the best interest of the patient. In sum, the surrogate, and physician for that matter, is not a robot-like amanuensis of the patient. Rather, the surrogates are in their own right called upon to assume the responsibility of making ethical decisions.
Moving health care decisions for incapacitated persons out of the courts and into the family forum is highly desirable. For this reason, the Health Care Surrogate Act of Illinois is worthy of commendation. However, application of the new law will require an understanding of the ethical principles which justify the legislation, and of some ethical issues which may arise in the implementation of the legislation.
Kevin O'Rourke, O.P.
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