Lawrence P. Ulrich, Ph.D.


From Manuscript;
The Patient Self-Determination Act: Meeting the Challenges in Patient Care
Copyright 1998 Lawrence P. Ulrich, Ph.D. 

    Court procedures surrounding the unhappy circumstances of Karen Quinlan in New Jersey provided the first dramatic legal arena for examining the issues of patient self-determination and the termination of life-sustaining or life-extending technologies.(1) This case made public the struggles which many physicians, institutions, and families had faced with the development of more, and more sophisticated, technologies which were able to prolong the process of dying for patients who would have died more quickly from their syndromes if the technologies had not been employed. Because the ethical and legal issues surrounding the employment and limitation of these technologies had not been resolved to the satisfaction of the members of the healthcare community, relief was sought through the courts so that Karen Quinlan's best interests could be served. The family had come to terms with the limitations of technology in Ms. Quinlan's case. However, the physicians and the healthcare institution insisted on pursuing a course to preserve her life in spite of her severely compromised condition and the wishes of her parents.

    Karen Quinlan was 21 years of age in 1975 when, at a party, she stopped breathing for two fifteen-minute intervals. She could not be roused with mouth-to-mouth resuscitation and she was taken to the hospital where she was placed on a respirator with a tracheotomy being subsequently performed. After three days her physician determined that she had suffered anoxia and her cortex has been severely damaged. Her EEG was not flat, and, therefore she was not brain dead, but it was abnormal in a way which was consistent with the anoxic state of her cortex. She soon began to exhibit all the characteristics of a chronic vegetative state including the sleep-wake cycles which are consistent with this state. Consulting neurologists confirmed her condition as being that of a chronic and persistent vegetative state. Attempts to wean her from the respirator were unsuccessful. She was considered to be totally respirator dependent and moribund. Nutrition was delivered by means of a naso-gastric tube.

    Ms. Quinlan's father, Joseph, sought the Court's appointment of him as guardian of her person so that he could make the decision regarding the removal of her respirator. The Superior Court refused his petition,(2) but the New Jersey Supreme Court, reversing the lower court, granted it. Mr. Quinlan was supported by the traditions of the Roman Catholic Church which hold that patients are not required to undergo treatments which are considered to be "extraordinary."(3) This term refers to treatments which will not provide a reasonable hope of benefit to the patient.(4) Since the respirator would not lead to Ms. Quinlan's recovery or even to a moderate improvement in her condition, the use of the respirator could be determined to be lacking in benefit and, thus, extraordinary. Mr. Quinlan claimed to be in a sound position to assert his daughter's wishes because they were grounded in their Roman Catholic religious tradition. Following the principle of autonomy it can be asserted that patients are in the best position to determine their best interests and, thus, what will benefit them. It was claimed that Mr. Quinlan, acting as his daughter's surrogate and following her wishes would be acting in her best interests.

    The decision of the New Jersey Supreme Court turned on the issue of the right to privacy. The Court had to decide if the constitutional right to privacy which had been established in Griswald v. Connecticut(5) and upheld in Roe v. Wade(6) could be extended to cases such as Ms. Quinlan's. This was the first time a Court was called upon to apply the right to privacy to a situation involving the removal of life-supports. The Court compared the situation of a patient in this condition with a patient in a terminal condition from cancer. The Court asserted that there was no logical distinction between the right of patients to make decisions in the two situations, thereby coming very close to asserting that the persistent vegetative state is a terminal condition.(7) Although the state can limit the right to privacy in the determination of medical treatments, the Court indicated that the ability of the state to limit this right is directly related to the State's interest in preserving the life of the patient. In the analysis the Court clearly stated this relationship: "We think that the State's interest weakens and the individual's right to privacy grows as the degree of bodily invasion increases and the prognosis dims."(8) The Court determined that this analysis applied to Ms. Quinlan and that, since she was incompetent, Mr. Quinlan could exercise her right to privacy on her behalf.

    Furthermore the Court expressed the opinion that the refusal of treatment in such cases should not be construed as suicide nor that the withdrawal of treatment in such cases should be considered homicide. Rather the Court acknowledged that death in such cases occurs as the result of the natural process of the impaired condition. It also expressed the opinion that future cases of this kind need not be brought before the Court for resolution. Instead the proper place for their resolution is with the family of the patient in consultation with the physicians treating the patient and the Ethics Committee of the facility in which the patient is being treated.

    This pioneering decision contains several of the foundation stones for the Patient Self-Determination Act. The basis of the law is established by the recognition of the right of the patient, supported by the constitutional guarantee of the right to privacy, to refuse treatment when faced with a severely life-threatening and irreversible pathophysiological condition. The patient's liberty to do so is grounded in the patient's values. The State has only a limited right to interfere with the implementation of those values. The right to self-determination overrides most State's interests when healthcare options are at stake. It is virtually absolute when the patient's prognosis is so bleak.

    The decision also supports the role of the surrogate in advancing the interests of an incompetent patient. Implied in this role is the belief that the incompetent patient does not lose her interest in what will happen to her merely because she has become incompetent.(9) The surrogate can articulate the patient's interest about the direction of her healthcare on her behalf.

    An important extension of this decision, and its refusal to consider the removal of treatments in conditions of this kind as homicide, is the assertion of the responsibility of the patient. Since the physician is not considered to be committing homicide when patients refuse treatments in life-threatening situations, the responsibility for the end-of-life decision lies with the patient or her surrogate.(10)

    Moreover, the removal of life-extending treatments in situations of this sort are considered to be a customary form of medical practice. The Court recognizes that such an approach to medical practice is not only customary but even desirable when it says: "We glean from the record here that physicians distinguish between curing the ill and comforting and easing the dying; that they refuse to treat the curable as if they were dying or ought to die, and that they have sometimes refused to treat the hopeless and dying as if they were curable."(11) In chapter 6 we will examine the principle of justice in delivering healthcare and will give a detailed analysis of this principle as it applies to the sentiment expressed by the Court in this passage.


1. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976).

2. In re Quinlan. 137 N.J.Super. 227, 348 A.2d 801 (1975).

3. United States Catholic Conference. Ethical and religious directives for catholic health facilities. Washington, D.C., 1971. These directives were revised in 1975 and again in 1994. They are consistent in holding the position on extraordinary means of extending life. Cf. directive 57 in the 1994 revision and published in 1995.

4. Kelly G. Medico-moral problems. St. Louis, MO: The Catholic Health Association, 1957, p. 129.

5. Griswald v. Connecticut. 381 U.S. 479, 85 S.Ct. 1678, 14 L.Ed.2d 510 (1965).

6. Roe v. Wade. 410 U.S. 113, 153, 93 S.Ct. 705 (1973).

7. This is at odds with a position later articulated by the American Academy of Neurology which asserted that a persistent vegetative state is not a terminal condition. (Cf. American Academy of Neurology. Position of the american academy of neurology on certain aspects of the persistent vegetative state patient. Neurology 1989;39:125-126.)

8. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976), page 663.

9. The point was explicitly addressed later in In re Colyer. 660 P.2d 738 (Wash. 1983).

10. The ethical issues surrounding the responsibility of patients will be more extensively explored in chapter 9.

11. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976), Page 667.