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Choosing death for Nancy Cruzan.

Choosing Death for Nancy Cruzan

In Cruzan v. Harmon, [1] the United States Supreme Court will, for the first time, decide whether a guardian has a constitutional right to require that all nutrition and hydration be with-held from an incompetent ward. Beyond the constitutional issues are troubling questions of medicine and ethics and how we are to care for people like Nancy Cruzan. Regardless of the outcome of Cruzan, these issues will continue to plague the courts until a satisfactory resolution is achieved.

Informed Refusal of Medical

Treatment

Nancy Cruzan's parents are claiming standing to assert her right to be free from "unwarranted bodily intrusions," a right they contend is violated since Nancy "is being subjected to ongoing, state-ordered medical treatment against her wishes." But is Nancy's tube feeding, in fact, against her wishes? Since she is currently incompetent, and thus unable to make a decision, the question must be whether she expressed her wishes prior to the accident in a way that must be given legal effect. The Missouri Supreme Court answered this question negatively based upon the legal theory of informed consent. [2]

The requirement that a competent patient give informed consent before treatment is based upon the law's respect for the individual autonomy of each person to make decisions relating to his or her health and welfare. [3] Informed consent requires: that the patient have the capacity to reason and make judgments; that the decision be voluntary and uncoerced; and that there be a clear understanding of the nature of the disease and its prognosis. [4] Since, under hypothetical circumstances, neither the benefits nor the risks of treatment can be properly weighed, any statements Nancy made prior to her automobile accident regarding life-sustaining treatment did not constitute informed refusal of care.

Her parents have argued that "Nancy's statements alone are enough to stop this artificial treatment." These statements were summarized in the testimony of Nancy's roommate to the effect that she "would not want to continue her present condition without hope as it is." But, the court found these statements "unreliable for the purpose of determining her intent." Similar statements have been rejected by other courts when they were "remote, general, spontaneous, and made in casual circumstances." [5] Another court noted that "If such statements were routinely held to be clear and convincing proof of a general intent to decline all medical treatment once incompetency set in, few nursing home patients would receive life-sustaining medical treatment in the future." [6] Thus, such statements - short of informed refusal - are not a sufficient basis for withdrawing Nancy's feeding.

Constitutional Standing of

Guardians

In their appeal to the U.S. Supreme Court, Nancy's parents appear to concede the point that her previous expressions do not constitute informed refusal. However, they claim that, while the Missouri court "did not dispute that these long protected autonomy rights exist for competent persons, it "erred dramatically ... when it held that because Nancy is permanently unconscious, she has lost the constitutional right ... to have her family or another surrogate decision-maker participate in her medical treatment decisions ...." [7] That is, the Cruzans' attempt to claim authority over Nancy as both her parents and her guardians. It is clear, however, that they have no authority over Nancy "as her parents." Parents do have independent constitutional rights to the care and custody of their minor children, [8] but Nancy, now thirty-two years old, was a married adult woman when the accident occurred. Thus, the parents' right to participate in medical treatment decisions cannot be derived from their relationship to her as parents, it could only be derived from their role as guardian.

The U.S. Supreme Court has never held that the rights of one person are wholly transferrable to a surrogate, by operation of constitutional law, when the person is herself unable to exercise them. The court has ruled instead that the personal liberties enjoyed by those incapable of making their own decisions may only be "meaningful" when "exercised by agents with the best interests of their principal in mind" (emphasis added). [9] Moreover, as state appointed guardians of Nancy Cruzan under Missouri law, Nancy's parents are required to "act in the best interest" of their ward. At this point, therefore, both Supreme Court precedent and the duties of a guardian under Missouri law merge. Furthermore, even if Nancy's parents had rights over her as her parents, these may only be exercised in her best interest. [10] The central issue then, is whether feeding Nancy Cruzan is in her best interests.

Under Missouri law, guardians are required "to provide for the ward's care, treatment ... support and maintenance" including insuring that the ward "receives medical care and other services that are needed" and "promot[ing] and protect[ing] the care, comfort, safety, health, and welfare of the ward." [11] In exercising this authority, the guardian is the "delegatee of the state's parens patriae power," but courts retain the duty to supervise guardians to insure that the guardians act in the best interests of their wards. [12] Since feeding Nancy is necessary to preserve her life, it can hardly be disputed that continuing feeding is required by the Missouri guardianship statute and the guardian's duty to act in her best interest. This is true except when death is imminent. [13]

The Ward's Best Interests

Four general categories of persons require feeding by tube: persons with an impaired ability to ingest nutrients (for example, persons with Alzheimer's disease, stroke, head injury, or those who are comatose or have various cancers of head or neck); an impaired ability to digest nutrients (persons with cystic fibrosis, liver disease, cancers of the stomach, liver or pancreas); an impaired ability to absorb nutrients (persons with gastrointestinal side effects of cancer therapy, short bowel syndrome, malabsorptive disorders, Crohn's disease, enteritis, ulcerative colitis, cancers involving the small or large bowel, and radiation enteritis); and persons with other impairments such as severe depressions, failure to thrive, chronic pulmonary disease, and renal or cardiac disease. [14]

It is evident both that many people benefit from nutritional support and that tube feeding is necessary to preserve the lives of many with various disabilites. In 1980, 780,300 people received tube feeding in hospitals, 53,400 people received tube feedings in nursing homes, and 14,400 people received tube feedings at home. [15]

Furthermore, feeding by tube is not physically burdensome. This is certainly true in Nancy's case. According to expert witnesses called by Nancy's guardians, Nancy would feel no pain even if she were allowed to die by starvation and dehydration. Thus, the Missouri court concluded that "it is difficult to argue with any conviction that feeding by tube already in place constitutes a painful invasion for her."

Feeding by tube is also not economically burdensome. The cost of the formula for feeding by tube and the equipment needed to deliver it "is not unduly greater than the (cost of) standard hospital meals." [16] In Nancy's case, the cost of her food is only $7.80 per day, which is only 2.6 percent of the total cost of her care, and which is being borne entirely by the state of Missouri. [17]

Thus, because her life is preserved at negligible burden, it is clear that feeding Nancy Cruzan is in her best interest. The legal obligations Nancy's guardians assumed under Missouri's guardianship laws require them to feed her.

A Quality of Life Exemption?

Nancy's guardians, however, seek to exempt themselves from this legal obligation. Their first claim is polemical rather than legal. After noting that they consented to tube feeding originally, Nancy's parents contend that they "retain[ed] the power to withdraw treatment to which they originally had the power to consent." [18]

In fact, the family's consent to the placement of Nancy's gastrostomy tube was legally irrelevant. At that time, Nancy was a married adult and her husband consented to the gastrostomy. Furthermore, the husband's consent was also legally irrelevant. At the time the tube was implanted, Nancy was under the care of a physician who had a common law duty to utilize the ordinary means of providing treatment generally employed by other physicians that offers a reasonable hope of benefit, and that can be obtained and used without excessive pain or inconvenience. [19] This common law duty required the physician to provide her care, even if she could not consent to it. Thus, the family's consent was not legally required and does not confer a legal right to request withdrawal of treatment.

In addition, Nancy's guardians claim broad authority as surrogate decisionmakers - authority that is not bound by the best interest standard but is as broad as her own right to refuse care. But this claim moves beyond the right to make a decision concerning care for Nancy to a judgment about the value of Nancy's life. The guardians assert that "quality of life is an absolutely appropriate factor for a family to consider when decisions about life-prolonging medical treatment for a loved one must be made and family members are trying to decide what choice their loved one would make." [20] What they seek to end is an "artificial existence" of "being preserved on machines," as the guardians describe providing food through a tube - that is, they seek to choose death for Nancy based on their view of her quality of life.

That this is the crux of the matter was readily recognized by the Missouri Supreme Court. The court held that this is "a case in which we are asked to allow the medical profession to make Nancy die by starvation and dehydration. The debate here is not between life and death; it is between quality of life and death." Recognition that surrogate decisionmaking inherently involves questions of quality of life led to its rejection by the New York Court of Appeals since "it is inconsistent with our fundamental commitment to the notion that no person or court should substitute its judgment as to what would be an acceptable quality of life for another." [21]

A quality of life assessment is implicit when recovery is adopted as the standard to determine when food and fluids should be provided a patient. Food and fluids only maintain life; they do not treat an illness or restore damaged brain cells. Thus the claim that because Nancy will not recover she should not be fed "is but a thinly disguised statement that her life in its present form is not worth living." Using "recovery" as a standard shifts the issue from whether treatments are beneficial to the patient to whether patients' lives are beneficial to them. As one critic has observed, it leads us to believe that "if we cannot cure," then there is "little point to continue care." [22] The rejection of quality of life assessments is the most important holding of the Missouri Supreme Court. The court was clearly influenced by the fact that they were deciding the case "not only for Nancy, but for many, many other ... persons with all manner of handicaps (who) might find the states seeking to terminate their lives." The population at risk is enormous. It is estimated that there are 10,000 people in the United States in a condition similar to Nancy Cruzan's. In addition, an estimated 1.5 million Americans have severe dementia, a population expected to increase 60 percent by the year 2000, and 7.5 million persons with mental retardation. [23] Many of these persons, like Nancy, are incapable of making decisions regarding their treatment and care.

The implications of quality of life decisionmaking deeply disturb advocates for persons with disabilities. In an amicus curiae brief filed with the U.S. Supreme Court in Cruzan, the Association for Retarded Citizens of the United States, the Association for Persons with Severe Handicaps, and other disability rights groups supported the Missouri Supreme Court's decision since it "prevents `quality of life' assessments from being employed that would endanger the lives and well-being of all persons with long term mental disabilities." Moreover, the implication that the state's interest in preserving life must diminish as "quality of life" declines "plainly suggests a constitutionally imposed, sliding-scale standard of treatment and care that devalues the lives and well-being of persons with disabilities and others who fail some notion of `quality control.'" [24]

Other state supreme courts have rejected requests for withholding food and water from incompetent patients, agreeing with the Missouri Supreme Court view that such requests involve "choosing death" for the patient. The Washington Supreme Court, for example, held that "by authorizing the withholding of intravenous nutrition and hydration [the court would be authorizing] the death by starvation and dehydration ....[F] or all intents and purposes the Court [would be authorizing] mercy killing, arguably of a cruel nature." [25] That is the choice Nancy's guardians wish to make for her, one that the law should not allow.

References

[1]Cruzan v. Harmon, 760 S.W.2d 408 (Mo.

1988), cert. granted, 109 S.Ct. 3240 (1989). [2]Cruzan, 416-17, and 424. Unless otherwise

noted, quotations are from Cruzan. [3]Canterbury v. Spence, 464 F.2d 772 (D.C. Cir.

1972). [4]Sidney H. Wanzer et al., "The Physician's

Responsibility Toward Hopelessly Ill

Patients," New England Journal of Medicine

310:15 (1984), 955-59. [5]In re Jobes, 529 A.2d 434 (N.J. 1987), 443. [6]In re Westchester County Medical Center, 534

N.Y.S.2d 886 (1988),893. [7]Brief of Petitioner, 19-20. [8]Lassiter v. Department of Social Services, 452

U.S. 18 (1981), 27. [9]Thompson v. Oklahoma, 108 S.Ct. 2687 (1988),

2693 n.23. [10]See Parham v. J.R, 442 U.S. 429 (1984), 604. [11]Mo. Ann. Stat. Sec. 475.120.3 (Vernon Supp.

1989). [12]39 Am.Jur.2d Guardians and Wards 562 (1968

& Supp. 1989). [13]William E. May et al., "Feeding and

Hydrating the Permanently Unconscious

and Other Vulnerable Persons," Issues in

Law and Medicine 3:3 (1987), 203-217. [14]Jo Ann Davey McCrae and Nancy H. Hall,

"Current Practices for Home Enteral

Nutrition," Journal of the American Dietetic

Association 89:2 (1989), 233-40. [15]U.S. Congress, Office of Technology Assessment,

Life-Sustaining Technologies and the

Elderly, OTA-BA-306 (Washington, DC: U.S.

Government Printing Office, 1987), 294. [16]Michael H. Torosian and John L. Rombeau,

"Feeding by Tube Enterostomy," Surgery,

Gynecology and Obstetrics 150 (1980), 918-27. [17]Letter from Donald Lamkins, Administrator

of the Missouri Rehabilitation Center, dated

August 10, 1989 (personal communication). [18]Brief of Petitioner, 32. [19]James Bopp, Jr. "The Legal Implications of

Medical Procedures Affecting the Born," in

Human Life and Health Care Ethics, James

Bopp, Jr., ed. (Frederick, MD: University

Publications of America, 1985), 264-95. [20]Brief of Petitioner, 38. [21]Westchester County Medical Center, 892. [22]Gilbert Meilaender, "On Removing Food

and Water: Against the Stream," Hastings

Center Report 14:6 (1984), 11-13. [23]U.S. Congress, Office of Technology Assessment,

Losing a Million Minds: Confronting the

Tragedy of Alzheimer's Disease and Other

Dementias (Washington, DC: U.S. Government

Printing Office, 1987), 3; J.D. Munro,

"Epidemiology and the Extent of Mental

Retardation," Psychiatric Clinics of North

America 9 (1986), 591, 597. [24]Brief of Amicus Curiae of the Association

for Retarded Citizens of the United States

et al., 3, 15-16. [25]In re Grant, 747 P.2d 445 (1987), 461, modified,

757 P.2d 534 (1988); see also Westchester

County Medical Center, 894 n.5.

James Bopp, Jr. is a partner, Brames, McCormick, Bopp & Abel, Terre Haute, IN, and president, National Legal Center for the Medically Dependent and Disabled.
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Title Annotation:right to die case
Author:Bopp, James, Jr.
Publication:The Hastings Center Report
Date:Jan 1, 1990
Words:2594
Previous Article:Nancy Beth Cruzan: in no voice at all.
Next Article:The calculus of consent.
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