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Patient care decision making at end of life: Law lags behind medical advances
by Richard J. Pawl, MD, JD, FACEP, Assistant Professor of Emergency Medicine, Medical College of Georgia, Augusta
The body of law that deals with end-of-life decision making is hardly settled law. Because the welfare of citizens is largely the concern of individual states, judicial decisions regarding end-of-life issues in health care vary among the states.1 The courts of one state have no legal duty to honor the decisions of any other state, although jurists may look to other jurisdictions for non-binding guidance on issues that arise before any court. Over time, parallel, though not identical, trends may be perceived between the courts of different states. However, medical advancements in the last quarter-century created issues in patient care decision making that courts had not faced prior to the 1960s. Hence, there has been much less time for the body of law dealing with end-of-life decision making than many other areas within the law. This makes it difficult to make broad generalizations for every issue that one may encounter in patient care decision making. The following discussion attempts to identify some clear trends in this area of the law and serve as a guide to understanding and contending with end-of-life decision making. It is essential that readers always consult experienced attorneys within their own jurisdictions when faced with critical issues regarding end-of-life decision making.
The competent adult
Legal scholars tend to agree that there are some general principles that usually apply across all jurisdictions.2 Probably the most well established general principle that virtually every jurisdiction will follow is that a competent adult patient always will be given the autonomy to control the medical care he or she accepts or refuses. To state this as a principle, "[a]n adult patient with decision-making capacity may refuse any treatment unless the refusal will endanger the public health [or in a small minority of jurisdictions and under very narrow circumstances, a dependent or unborn child]. The family has no standing to be involved in the decision making but may be if the patient wishes."3
Competent adults have a broad legal prerogative to decide how to respond to medical conditions that threaten their well-being and even their lives. A competent adult has a privacy right to be free from unwanted interventions, even if such interventions are meant to maintain that person's life. Such a scenario occurred in Farrell.4
Kathleen Farrell was suffering from amyotrophic lateral sclerosis and was dependent upon a ventilator to keep her breathing. Even though her physician informed her that removing her from the ventilator would cause her death, Ms. Farrell insisted upon having her ventilator turned off. Her husband filed a complaint with the court seeking his appointment as special medical guardian for his wife with specific authority to disconnect her respirator. Although Ms. Farrell had died, still connected to her ventilator, by the time the New Jersey Supreme Court heard the case, they decided to hear the case nevertheless because of the importance of the issues involved.5 Citing Quinlan, the New Jersey Supreme Court asserted that Ms. Farrell, as a competent adult, could assert her right to privacy to refuse mechanical ventilation because her right to privacy was protected in the common law and in the state and federal constitutions.6
Another case that is illustrative of the principle that competent adults have the right to accept or refuse medical care under common law and constitutional law is useful to review because of the personal and social issues that arose that are not actually reflected in the decision of the court. Elizabeth Bouvia was a 28-year-old quadriplegic woman afflicted with cerebral palsy since birth and confined to bed in a public hospital, who petitioned the court for a writ of mandate to compel the hospital to stop feeding her through a nasogastric tube.7 She had previously stated that she wished to starve herself to end a life she now considered futile and meaningless.8 Despite her disabilities, Ms. Bouvia had acquired a college degree and had been married.9 However, her husband left her, she suffered a miscarriage, and her parents, no longer wishing to provide the care that she needed, turned her out of their home. A search for a place for her to live was unsuccessful, which necessitated her living in a public hospital.10 The court, in granting Ms. Bouvia's request to remove her feeding tube, asserted that her motive for the removal was irrelevant, because no one's approval was needed for her to exercise her right to refuse medical care.11 This right to refuse medical care was "basic and fundamental" as "part of the right of privacy protected by both the state and federal constitutions."12 However, two years after her successful court battle, she was interviewed by the Los Angeles Times, stating that "people should have the right…to decide if they want to suffer or not."13 Professor M.R. Flick points out in describing Ms. Bouvia's plight that perhaps she really had not wanted to die, but had wanted to be wanted14 — a very poignant observation that contains a warning to all clinicians to remember to examine a competent patient's true motives for the refusal of medical care before that patient's options are terminated by death.
There exist some cases where competent adults were denied the ability to refuse medical care when the well-being of their children was threatened. For example, in Dubreuil, a Florida court authorized the administration of a life-saving blood transfusion required due to uncontrolled bleeding in a woman after delivery of her child, despite her objections to receiving the transfusion on religious grounds.15 The appellate court invoked the state's parens patriae interests in the welfare of the woman's children, necessitating the transfusions against her will because the court found that the patient was the mother of four minor children and there was no evidence that anyone other than she would be available to care for them in the event of her death.16
It is generally true that, except where a state finds that the interests and well-being of minors may be affected by a competent adult's decision to forego life-saving medical care, a competent adult will always have the right to make decisions regarding the medical care he or she will accept or refuse.
Surrogate decision making at end of life
Generally, incompetent adults and minors require some sort of surrogate medical decision making. When it comes to minors, the surrogate decision makers are typically that minor's parents. Previously competent adults may have a surrogate appointed to make decisions for them either by statutory direction or through an advance directive. Never-competent adults typically will have a public guardian, appointed by a court, who are responsible for making medical care decisions for them. It is very important for clinicians to keep in mind that there exist limitations to surrogate decision making, and that such limitations may vary depending on the jurisdiction. Hence, despite generalizations that may be made below, surrogate decision making, particularly for end-of-life decisions, will be unique to a varying degree in every jurisdiction. It is prudent for clinicians to be familiar with the laws governing the jurisdiction within which they practice.
Minors. A fairly clear trend in the law is that a parent, or if there is no parent, the legal guardian, may refuse treatment for a minor who is terminally ill or irreversibly unconscious, so long as the minor agrees.17 There are some limitations concerning such decisions with regard to infants in some states under federal and state child abuse laws.18 No parent has the right to refuse beneficial medical treatment for their child provided that the treatment is a generally accepted practice in the medical community and that a beneficial outcome is expected. The U.S. Supreme Court ruled, "Parents may be free to become martyrs themselves. But it does not follow [that] they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves."19
On the other hand, when treatment is deemed futile based upon the generally accepted standard of care, and the health care providers and parents (or guardian) agree, it is legally acceptable to have life-sustaining treatment withheld or withdrawn.20 Futile life-sustaining care may also be withdrawn upon the agreement of parents and providers if the minor is in a persistent vegetative state.21 As is usually true, provider communication with the parents often surmounts issues that lead to a decisional impasse. However, controversial treatments or treatments with which reasonable clinicians may differ could lead to provider liability.
It is important to note that Congress enacted the Federal Child Abuse Prevention and Treatment Act in 1984, which provided general standards for the care of infants with defective medical conditions when the infant's life is immediately in danger.22 The Act generally prohibits withholding or withdrawing treatment for infants when such treatment can be reasonably estimated to correct or stabilize a condition that could be life-threatening. Clinicians caring for infants should also be familiar with their state's child abuse statutes, as they may apply to newborns and infants with defective medical conditions.
Adults. Surrogate decision-making law for adults is the most variable and lies at the cutting edge of bioethics and the law in some scenarios. It is beyond the scope of this writing to entertain the wide range of opinions in the bioethics and legal literature on this topic.
Most laws governing surrogate decision making will primarily respect a formerly competent patient's autonomy interests by requiring a surrogate to follow the course of treatment the patient would presumably want.23 Such issues are most clear when the formerly competent patient left explicit instructions in an advance directive. When explicit instructions have been left, the surrogate must follow those instructions if they apply to the medical scenario that the incompetent patient is facing, leaving little independent judgment to the surrogate. When an advance directive is clear that a patient would refuse a certain treatment if certain conditions are present, there is little argument that such treatment can be refused by the surrogate on behalf of the patient without going court.
If a formerly competent patient made an informed decision to reject certain medical care before becoming incompetent, such decisions will generally be given continuing effect as long as the circumstances have not materially changed.24 For example, in Yetter, Maida Yetter, while competent, had refused a breast biopsy for a breast mass when she had been hospitalized for schizophrenia.25 The patient's caseworker testified that at the time of her hospitalization, Ms. Yetter was "lucid, rational, and appeared to understand that the possible consequences of her refusal included death."26 Later, Ms. Yetter's mental illness became more profound to the point where she was no longer capable of discussing the matter of the breast biopsy. Although deemed incompetent at the court hearing, the court gave continuing effect to Ms. Yetter's refusal for the breast biopsy. Citing Roe v. Wade, the court stated that "the constitutional right of privacy includes the right of a mature competent adult to refuse to accept medical recommendations that may prolong one's life…[and] that the right of privacy includes a right to die with which the State should not interfere where there are no minor or unborn children and no clear and present danger to the public health, welfare, or morals."27
Although the case represents only one jurisdiction, it is likely that if a formerly competent patient made an informed decision to refuse certain medical treatment when that patient was competent, that patient's autonomy interests would be served by giving continuing effect to that decision, and such prior decisions would be respected by the courts.28
When a formerly competent patient expressed no strong preference or written advance directive regarding the refusal of certain treatment, a surrogate decision maker's choices will be more restricted. It seems possible that in light of the U.S. Supreme Court's decision in Cruzan, state courts that have no clear precedent for surrogate decision making may impose firm restrictions upon surrogate abilities to withdraw treatment in the absence of an incompetent's clearly articulated preferences.29 In Cruzan, the Supreme Court held that the Constitution does not forbid a state to require clear and convincing evidence of an incompetent's wishes to withdraw life-sustaining treatment.30 The "clear and convincing" evidentiary standard represents the strictest civil court evidentiary standard, but is not a requirement of the U.S. Constitution. Cruzan merely asserts that a state may set its own standards.
Courts are more likely to allow the discontinuation of life sustaining treatment when it is clear that the patient in question is in a persistent vegetative state or is terminally ill.31 However, courts may be less inclined to allow a surrogate to refuse medical care when the incompetent patient is not terminal or in something less than a clearly persistent vegetative state. For example, a New Jersey court ordered that an enterostomy tube be inserted to support the life of a patient who was severely debilitated from a stroke, but who was neither terminally ill nor in a persistent vegetative state.32 In Clark, the patient at issue had not executed a living will or health care power of attorney document,33 and he had not ever expressed any desires regarding medical treatment to any known person. Judging that the court had no basis upon which to base a "substituted" judgment on his behalf, the court used an objective test to make "[a] determination of whether certain treatment should be provided or withheld…strictly on a weighing of the burdens of life with the treatment versus the benefits of that life to the patient."34 The court held that the burdens of the surgery to insert the enterostomy tube did not outweigh the benefits that the patient derived from life.
However, in Wendland v Superior Court, an appellate court required the appointment of an independent counsel when the patient's wife sought appointment as his permanent conservator and to have his feeding tube removed.35 Mr. Wendland was a 43-year-old man who had been severely impaired as a result of a motor vehicle accident approximately two and a half years earlier. After being comatose for more than a year, he "awoke" and was found to be substantially brain injured. He was paralyzed on his right side and was able to follow simple commands.36 His wife, asserting that Mr. Wendland had made statements that he would not want to live in a state of total dependence, was making arrangement to transfer Mr. Wendland to a convalescent hospital where his feeding tube would be removed and he would be allowed to die.37 This decision had been supported by Mr. Wendland's physicians and the hospital's ethics committee. However, Mr. Wendland's mother and sister did not agree with this decision and sought the appointment of an independent counsel for Mr. Wendland in the conservatorship proceedings. The appellate court held that Mr. Wendland was entitled to an independent counsel to represent his interests because "his very life was at stake."38 Citing Cruzan, a concurring opinion went on to say that "this much is clear: a person has a constitutional right to refuse unwanted medical procedures, including artificial hydration and nutrition."39
There are those who argue that some of the "rights" upon which courts have derived patient rights are controversial in themselves. However, regardless of the controversies about the implied fundamental rights upon which some patients' autonomy rights are based, it is clear that the competent patient's right to self-determination is well established in American law. Although the forgoing essay has not covered the gamut of court decisions regarding patient care decision making across the varying jurisdictions in the various states, several broad generalizations can be made.
Competent adults can refuse any medical care. The consequences of the refusal of care may be detrimental to the patient refusing the care, yet courts will support a competent patient's autonomy in choosing what can be done with their own health care with only a few exceptions. On the other hand, when it comes to incompetent adult patient care decision making, the decisional waters become slightly murky. If an incompetent patient's preferences are clear either from testimony of others or documents that specifically apply to the patient's situation, medical care may be refused on behalf of the patient. However, when the incompetent patient's preferences are not clear, courts may vary in their decisions. Most courts weigh to varying degrees the opinion of surrogate decision makers depending upon the facts surrounding a case. Yet surrogates cannot refuse beneficial care that is not considered futile for an incompetent patient in most jurisdictions when it is not clear from the evidence that the patient would refuse such care.40 This is an important concept because some surrogates believe that by nature of their legal status as a surrogate, the surrogate has free reign to make any decisions on behalf of an incompetent patient. With regard to minors, most courts will not allow parents to refuse generally accepted medical care when such care is beneficial to the minor. Parents will generally be allowed to refuse "controversial" medical treatment, but the interests of the state in the welfare of the minor will trump any parent's refusal to allow a minor to receive beneficial care. There is some case law that has evolved the concept of the "mature minor" wherein the medical care preferences of a teenager on the threshold of legal adulthood may be given much deference by courts that subscribe to such a concept.41
Fortunately, there are some clear precedents upon which providers can depend. However, to be sure, whenever there exist disagreements between any or all concerned parties regarding medical care for anyone but a competent adult, providers should endeavor to enlist all their skills to resolve the controversies outside the courtroom because when the courts intervene in such cases, there will be a party that may be disgruntled with the results.
1. The 10th Amendment of the United States Constitution, ratified as part of the Bill of Rights in 1791, provides that any powers not constitutionally delegated to the federal government, nor prohibited to the states, are reserved for the states or the people. Also known as the Reserved Power Clause, the 10th Amendment empowers each state with the interest in the welfare of its constituents, among other powers.
2. For readers who want a comprehensive discussion regarding health care decision making from a legal perspective, see Claire C. Obade, Healthcare Decision-Making, Patient Autonomy, and Professional Responsibility, in Health Law Practice Guide, Vol.1, at 8-1 et seq, A.G. Gosfield, et al, Ed., American Health Lawyers Assoc., Thompson/West (2005). Obade is a superlative writer in this area of law and covers this topic from the viewpoint of an attorney fairly comprehensively.
3. Id. at 8-67.
4. In re Farrell, 108 N.J. 335, 529 A.2d 404 (1987).
5. Id. at 410.
7. Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 225 Cal. Rptr. 297 (1986).
8. Id. at 297.
9. Id. at 300.
11. Id. at 306.
13. Flick MR. The due process of dying. 79 Calif. L. Rev. 1121, 1143, quoting from Los Angeles Times, May 23, 1988, Sec. 1 at 14, col. 2.
15. In re Dubreuil, 603 So. 2d 538 (Fla. App. 1987).
17. See FN. 2, at 8-68.
19. Id. at 8-26, quoting the U.S. Supreme Court in Prince v. Massachusetts, 321 U.S. 158, 170, rehearing denied, 321 U. S. 804 (1944).
20. See FN. 2 at 8-27. See also, e.g. Custody of a Minor, 385 Mass. 697, 434 N.E. 2d 601 (1982).
22. 42 U.S.C.A. Sec. 5101(a); 45 C.F.R. Sec 11340.15. See FN. 2 at 8-32.
23. Cantor NL. Twenty-five years after Quinlan: A review of the jurisprudence of death and dying. J Law Med Ethics 2001; 29:182-196.
24. See FN. 2 at 8-19
25. In re Yetter, 62 Pa. D. & C. 2d 619 (C.P. Northampton 1973).
26. Id. at 621.
27. Id. at 623.
28. See FN. 2 at 8-20.
29. Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261, 110 S. Ct. 2841, 111 L. Ed. 2d 224 (1990).
30. Id. at 284.
31. In re Storar, 52 N.Y. 2d 363, 438 N.Y.S. 2d 266 (1981). The court authorized removal of a mechanical ventilator from a vegetative, terminally ill patient where the decision was consistent with medical recommendations and the patient's previously expressed wishes.
32. In re Clark, 210 N.J. Super. 548, 510 A. 2d 136 (Ch. Div. 1986); see generally, FN. 2 at 8-21.
33. Id. at 560.
34. Id. at 564-565.
35. Wendland v. Superior Court, 56 Cal. Rptr. 2d 595 (Cal. App. 3d Dist. 1996).
36. Id. at 597.
38. Id. at 600.
39. Id. at 601, citing Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261, 277 (1990).
40. The weight of the evidence to establish the preferences that the incompetent patient may have expressed in word or deed is determined by the state, as was established in Cruzan.
41. See, e.g. In re Interst of E.G., 515 N.E. 2d 286 (Ill. App. 1987), aff'd in part, rev'd in part, 549 N.E. 2d 322 (1989).