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Teaching Bioethics in the Law School Classroom: Recent History, Rapid Advances, the Challenges of the Future

Published online by Cambridge University Press:  24 February 2021

Catherine J. Jones
Catherine J. Jones*
Affiliation:
Western New England College School of Law;Gettysburg College;Georgetown University Law Center;Yale Law School
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Extract

I began teaching Health and the Law in January, 1985. Louise Brown, the world's first “test tube” baby, was six years old. Karen Ann Quinlan, whose ventilator had been disconnected years earlier, was still alive and being tube fed in a New Jersey nursing home. Acquired Immune Deficiency Syndrome (AIDS) was a still little understood disease. Although forward looking scholars had been writing important books about access to expensive health care, few legal challenges had been made to alleged treatment (whether ordinary or extraordinary) refusals. Oh, what a difference a decade makes! In keeping with the theme of this issue, this article focuses on law and bioethics in the year 2000, particularly the teaching of bioethics. In some ways the challenges of teaching bioethics in the year 2000, or anytime, are the challenges of teaching any course in the year 2000, or anytime. In other ways, the special topics covered in a bioethics (or any health law) course and the dramatic impact on the area of health law by science, medicine, and technology make the challenges far more difficult than in many other areas of the law.

Type
Articles
Information
American Journal of Law & Medicine , Volume 20 , Issue 4: Symposium Dedicated to Joseph “Jay” Healey , 1994 , pp. 417 - 437
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1994

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References

1 The course I teach is actually a course in the law as it relates to bioethics and decision-making. When our faculty approved the adoption of the course, it was given the generic title “Health and the Law” to allow others to teach various topics in the broad area of health law without having to seek additional faculty course approval.

2 Louise Brown was born in July, 1978. Richard M. Weintraub, First Test-Tube Baby Born in British Hospital, Wash. Post, July 26, 1978, at Al.

3 Ms. Quinlan's ventilator was disconnected on May 22, 1976. Karen Quinlan Dies After 10- Year Coma; N.J. Case Prompted Historic Decision to Disconnect Respirator, L.A. Times, June 12, 1985, Pt. 1, at 4 [hereinafter Karen Quinlan].

4 Karen Quinlan died on June 11, 1985. Id.

5 AIDS cases were first reported in 1981. James W. Curran et al., The Epidemiology of AIDS: Current Status and Future Prospects, 229 Sci. 1352, 1352 (1985).

6 See, e.g., Guido Calabresi & Philip Bobbitt, Tragic Choices (1978); Jay Katz & Alexander M. Capron, Catastrophic Diseases: Who Decides What (1975).

7 But se. Campbell v. Mincey, 413 F. Supp. 16 (N .D. Miss. 1975), aff’ d, 542 F.2d 573 (5th Cir. 1976) (challenge to hospital emergency room's refusal to treat woman about to give birth).

8 And here I discuss only four: reproductive technology, withdrawal of treatment and end-of-life decision-making, AIDS, and access to health care.

9 Like many teachers, I vary my course coverage virtually every time I teach it. In addition to these topics, I teach a wide variety of material related to informed consent and decision-making (the variations in the general informed consent doctrine; its applicability to competent adults, incompetent adults, selectively competent adults, and children; disclosure related to diagnosis and treatment, as well as to issues such as the medical status of the patient's health care providers or the potential commercial gain to the provider from the recommended treatment) and material relating to the treatment (or withdrawal of treatment) from newborns and older children. I have always assumed that we each choose to teach the material we do for idiosyncratic reasons. Many of my reasons are selfish: these topics among all available from which to choose interest me the most; they provide an interesting and challenging set of materials and issues for my students as well as for my own scholarship; the variety of material (cases, statutes, regulations, professional and popular literature) and its upto-date nature is virtually limitless; one or more of the subjects will prove relevant to every student (and every student's family) in her or his private life even if never presenting itself professionally; the topics allow teacher and students to explore the “personal side” of the legal issues presented, often aided by first person accounts in the medical, legal, and popular literature; well developed doctrine in a number of areas of the law applicable or potentially applicable to many of the issues raised in a bioethics and decision-making course allows students to develop and refine their analytical, argument, and application skills. My reasons for teaching the material I do serve to meet my goals for the course: providing my students with exposure to a wide variety of sources of law (case law, federal and state statute, federal and state regulation, and, of course, federal and state constitutions); assisting my students in understanding legal doctrine and how it is applied and how to argue for the development and application of new doctrine or old doctrine in a new context; exposing my students to the social and personal issues so apparent in many bioethics-related cases; having my students address issues of justice and fairness on both a “macro” level (for example, access to health care in general) and a “micro” level (for example, decision-making issues in individual cases); and addressing questions very difficult to resolve in a legal or a greater societal framework. For a good review of the reasons for teaching health law, see George J. Annas, Health Law at the Turn of the Century: From White Dwarf to Red Giant, 21 CONN. L. REV. 551, 554 (1989) [hereinafter From White Dwarf to Red Giant]. From my own selfish viewpoint, a course in bioethics and decisionmaking is just about the most perfect course to teach, from both a substantive and a classroom perspective.

10 Cases which appear there are appealed and subsequent opinions must be substituted for the ones in the book; doctrines are developing at a pace unusual for the common law; and both federal and state legislative and regulatory bodies are playing a major role in the development of health law.

11 When I began teaching Health and the Law, I used a casebook supplemented with material I gathered and edited myself. As time went by, my supplement had more pages than those I assigned from the casebook. I finally concluded that I needed to put together my own materials, both to provide myself with the most effective, up-to-date teaching materials for the course and to alleviate the financial burden on my students of having to buy a large casebook for a few hundred pages of reading and my own materials with twice as much reading.

12 See Part II of this article for a discussion of the rapid changes in the law relating to these areas which has occurred during the last 10 to 20 years.

13 Cases relating to HIV positivity and AIDS raise issues cutting across wide areas of the law and could be taught in many law school courses. See AIDS Law Today: A New Guide for the Public (Scott Burris et al. eds., 1993) and Rhonda R. Rivera, Lawyers, Clients, and AIDS: Some Notes from the Trenches, 49 Ohio St. L.J. 883 (1989) for an example of the wide variety of issues raised by HIV and AIDS cases. The fact that HIV-and AIDS-related cases are really, in substance, about so many diverse areas of law-substance covered in many courses in the law school curriculum-raises the question of why a teacher would cover AIDS as a discrete topic or why a teacher would cover AIDS as opposed to any other disease, for example, heart disease, cancer, diabetes, or Alzheimer's. For a discussion of my reasons for treating AIDS as a separate topic, see infr. notes 109-19 and accompanying text.

14 That is not to say that issues of first impression cannot arise in any substantive area when one or more parties are affected by HIV or AIDS; but for the most part, the cases raise many issues already well thought out in the law.

15 I use the phrase “traditional surrogacy” to indicate the situation in which a man (the intended genetic father) contracts with a woman (the so-called surrogate, although a misnomer because she is in fact the child's genetic mother) for her to be inseminated with his sperm, conceive a child, carry the child to term, and then relinquish all of her parental rights and responsibilities to the genetic father. The genetic father will then raise the child with the help of his wife, who will adopt the child.

16 In the typical private adoption scenario, there is no genetic relationship between the adoptive parents and the child.

17 In Johnson v. Calvert, for example, where an embryo created from the sperm and egg of a married couple was implanted into a woman unrelated to them or the resulting child, the court found that both the genetic mother of the child and the gestational mother of the child could claim to be the child's mother pursuant to California statute. 851 P.2d 776 (Cal. 1993), cert. denied, 114 S. Ct. 206 (1993) and cert. dismissed, 114 S. Ct. 374 (1993) (interpreting Cal. Code,§ 7003(1)(West 1993) (current version at Cal. Fam. Code § 76 10(a)(l994)). The court chose to use as a “tie-breaker” the intentions of the sperm donor and egg donor in creating the embryo and entering into the surrogacy agreement. Id. at 782. A dissenting justice, however, strongly disagreed with the majority's approach and argued that custody of the child should be determined according to the best interests of the child. Id. at 789 (Kennard, J ., dissenting).

18 842 S.W.2d 588 (Tenn. 1992), cert. denied, 113 S. Ct. 1259 (1993).

19 There are undoubtedly other possible approaches to be taken to the disposition of the embryos.

20 Another example might involve the rights and responsibilities of known sperm donors when the child's genetic mother is: (a) raising the child alone; (b) raising the child in partnership with a man, to whom she may or may not be married; or (c) raising the child in partnership with another woman. For a full discussion see John A. Robertson, Children of Choice: Freedom and the New Reproductive Technologies (1994).

21 Dep't of Human Servs. v. Northern, 563 S.W.2d 197 (Tenn. Ct. App. 1978), cert. denied, 575 S.W.2d 946 (Tenn. 1978), appeal dismissed as moot, 436 U.S. 923 (1978).

22 Were Mary Northern permitted to return home, she would soon die, either from infection caused by her gangrenous feet and lack of medical care, or from exposure or starvation.

23 U.S. Dep't Health & Human Servs., Pub. Health Serv., Centers for Disease Control, 1992 Revised Classification System for HIV Infection and Expanded AIDS Surveillance Case Definition for Adolescents and Adults (Nov. 15, 1991); U.S. Dep't Health & Human Servs., Pub. Health Serv., Centers for Disease Control, Addendum to the Proposed Expansion of the AIDS Surveillance Case Definition (Oct. 22, 1992). See also Howard L. Minkoff &Jack A. DeHovitz, Care of Women Infected with the Human Immunodeficiency Virus, 266 JAMA 2253 (1991). Traditionally, AIDS was defined in conjunction with a list of clinical conditions. That list excluded many conditions unique to women. The expanded definition of AIDS includes diagnoses based on CD4+ T-lymphocyte count, regardless of clinical diagnosis.

24 See Jessica H. Muller & Brian Desmond, Ethical Dilemmas in a Cross-Cultural Context: A Chinese Example; Cross-Cultural Medicine: A Decade Later, 157 W.J. Med. 323 (1992); Warren E. Leary, Uneasy Doctors Add Race-Consciousness to Diagnostic Tools, N.Y. Times, Sept. 25, 1990, at C1. C10 (discussing racial and cultural differences applicable to treating medical patients).

25 See, e.g., In re Conroy, 486 A.2d 1209 (N.J. 1985) (84-year-old patient).

26 See, e.g., In re Baby “K”, 16 F.3d 590 (4th Cir. 1994) (infant patient).

27 In 1991, over three quarters of all AIDS cases were reported to be among gay men or injecting-drug users. U.S. Dep't Health & Human Services, Pub. Health Serv., Centers for Disease Control, Update: Acquired Immunodeficiency Syndrome-United States, 1991, 41 Morbidity & Mortality Wkly. Rep. 463, 464,(1992).

28 A number of years ago, I was on leave and visiting at a major medical center. One morning I watched a surgeon perform a lumpectomy on an elderly woman. The surgeon explained to me that he thought the lumpectomy was a bad decision on her part and that she should have opted for a modified radical mastectomy followed by radiation therapy. He further explained that she made the choice she did because she could not walk and used a wheelchair. A modified radical would have made it difficult, if not impossible, for her to get herself in and out of her wheelchair. The wheelchair would have seriously affected her ability to make frequent trips for radiation. Her life circumstances, therefore, dictated for her the type of medical treatment she chose. The surgeon, however, remained angry at the decision she had made. I also watched a physician do all he could to prevent the husband and daughter of a patient from being at her bedside when she died. He was not successful. When I questioned him about his adamancy in wanting them out of her hospital room, he told me that he could not imagine ever being at the bedside of a dying loved one and he could not imagine anyone else's really wanting to be there, either

These are the types of examples I frequently use with my students to illustrate how clients’ life circumstances may control both their choices in life and the strategy their lawyers employ in representing them, and how we often make decisions for others based upon our own beliefs and assumptions. I emphasize that lawyers as well as physicians are capable of this behavior.

29 Generally, when I have told my students that they share the responsibility to make a response with me, they acknowledge that they do, but they argue that my obligation to do so is greater because I am teaching the class. I do not necessarily agree that my responsibility is greater for that reason. I do understand, however, that it is often more difficult for a student to respond in such situations than it is for a teacher to do so. Students “live with” their peers on a daily basis much more intensely than I do and, more importantly, the student who objects may identify with the offensiveness of the comment because she or he is a member of the class attacked and, therefore, finds it very hard to respond for that reason.

30 While some might argue that the embarrassment is not unwarranted, I try not to embarrass any of my students for any reason. Nor do I want students to think that there are issues they cannot raise or comments they cannot make in my classes. They also should know, of course, that any issue they raise or comment they make is open to discussion and disagreement.

31 The issues of how to deal with the hard questions or offensive comments raised in class were among those which Jay Healey raised often and thoughtfully with his colleagues. He loved to tell a story concerning his students’ assumptions about his views on abortion. One year, following a discussion of abortion in his class, two students approached Jay to object to his inserting his own opinions about a woman's right to choose into the class discussion. The only difficulty with their objection was that one was certain Jay supported a woman's right to choose and the other was certain he opposed it! Jay believed that his personal views were not relevant to the class discussion. I am indebted to Jay for leading an annual workshop at the American Society of Law, Medicine & Ethics Health Law Teachers Conference and for giving conference participants the opportunity to discuss these hard questions collectively. Although few of us may have found answers to the questions, our ability to address them has been strengthened by Jay's wisdom and guidance.

32 In terms of informed consent and decision-making, the attorney/client relationship is analogous to the doctor/patient relationship, and the reasons offered by doctors and patients for allowing doctors to control the relationship could be applied as well to lawyers’ and clients’ willingness to allow lawyers to control the legal decision-making process. See Cathy J. Jones, Autonomy and Informed Consent in Medical Decisionmaking: Toward a New Self-Fulfilling Prophecy, 47 Wash. & Lee L. Rev. 379 (1990). For example, it is easy to imagine lawyers arguing that they have acquired their knowledge and expertise only through years of schooling and practice, and that to convey accurate information to clients so that clients would understand it would be impossible; that clients neither understand nor remember what they are told; that testing clients’ understanding of what they have been told is too resource intensive (i.e., the meter is running and clients do not want to pay for that part of a lawyer's service); that clients want lawyers to make decisions for them; and that lawyers can convince almost any client to do what the lawyer thinks is best for the client. Id. at 406-25.

33 See Del. Bar Ass'n Prof. Ethics Comm., Op. 1988-2, i. Comm. on Prof. Ethics of Del. State Bar Assoc., ABA/BNA Lawyers’ Manual on Prof. Conduct, Ethics Opinions (addressing issue of whether a lawyer who has been informed by a client that the client has AIDS has an ethical obligation to reveal or, in the alternative, would violate the Rules of Professional Conduct were he to reveal that information to the woman with whom the client lives, the woman being a client of lawyer's law partner).

34 Informed consent, access to health care, and patient refusal of health care are three major examples of this dichotomy.

35 This issue is well illustrated in those cases where patients or their families want treatment to be withdrawn, but such withdrawal would violate the professional or personal values of the health care provider. See, e.g., In re Requena, 517 A.2d 886 (N.J. Super. Ct. Ch. Div. 1986), aff'd, 517 A.2d 869 (N.J. Super. Ct. App. Div. 1986).

36 There are ways for those outside the medical system to educate themselves. Legislators and regulators hold public hearings; attorneys conduct discovery; judges hear evidence. But, unless one actually becomes “an expert” in health law (or, more likely in one or more areas of health law), the challenge of learning about the practice of medicine (in both its clinical and its business sense) is constant. While we cannot hope to teach our students much about the medical system, it is necessary that we teach them that they have much to learn and that they must constantly recognize that there is much they need to know.

37 The videotapes are part of my students’ regular assignments. While I schedule at least one showing for each tape, I do not use class time to do so. The tapes are always on reserve in the library and the students must take responsibility for watching them.

38 Weintraub, supra note 2.

39 See Bartha M., Knoppers & Sonia, LeBris, Recent Advances in Medically Assisted Conception: Legal, Ethical and Social Issues, 17 Am. J.L. & Med. 329, 329–31 n.2 (1991)Google Scholar for a review of world-wide special commission reports focusing on the ethical and legal issues surrounding assisted conception. See also Walter Wadlington, Artificial Conception: The Challenge for Family Law, 69 Va. L. Rev. 465 (1983).

40 See, e.g., In re Adoption of Anonymous, 345 N.Y.S.2d 430 (N.Y. Surr. Ct. 1973).

41 See, e.g., Jhordan C. v. Mary K., 224 Cal. Rptr. 530 (Cal. Ct. App. 1986) (affirming trial court decision which declared sperm donor father of child and awarded visitation privileges over biological mother's objection).

42 See, e.g., Thomas S. v. Robin Y., 599 N.Y.S.2d 377 (N.Y. Fam. Ct. 1993) (sperm donor barred from asserting paternity on equitable estoppel grounds); Leckie v. Voorhies, 875 P.2d 521 (Or. Ct. App. 1994) (sperm donor precluded from asserting paternity based on pre-birth agreement with child's biological mother and mother's partner).

43 See, e.g., Adoption of Tammy, 619 N.E.2d 315 (Mass. 1993) (biological mother's life partner permitted to adopt child born through AID);In re Evan, 583 N.Y.S.2d 997 (N.Y. Surr. Ct. 1992) (same).

44 See, e.g., Nancy S. v. Michele G., 279 Cal. Rptr. 212 (Cal. Ct. App. 1991) (denying biological mother's former partner custody of and visitation with children conceived by biological mother through AID, by mutual agreement, during relationship; consistent with biological mother's objection); Alison D. v. Virginia M., 572 N.E.2d 27 (N.Y. 1991) (denying standing to biological mother's former partner who sought visitation with child conceived through AID, by their mutual agreement, during their relationship; consistent with biological mother's objection).

45 Se. Karin T. v. Michael T., 484 N.Y.S.2d 780 (N.Y. Fam. Ct. 1985).

46 E.J. Dionne, Jr., Widow Wins Paris Case for Husband's Sperm, N.Y. Times, Aug. 2, 1984, at A9.

47 Hecht v. Superior Court, 20 Cal. Rptr. 2d 275 (Cal. Ct. App. 1993). Ms. Hecht has apparently also prevailed. David Margolick, 15 Vials of Sperm: The Unusual Bequest of an Even More Unusual Man, N.Y. Times, Apr. 29, 1994, at B18.

48 At least those instances in which a man and a woman enter into an agreement by which she agrees to be inseminated with his sperm, carry the child to term, and then relinquish the child and her parental rights to the genetic father.

49 In re Baby M., 537 A.2d 1227 (N.J. 1988).

50 Mr. Stern and Ms. Whitehead entered into their agreement on February 6, 1985. Melissa was born on March 27, 1986. Id. at 1236.

51 362 N.W.2d 211 (Mich. 1985).

52 First the trial court decision, 525 A.2d 1128 (N.J. Super. Ct. Ch. Div. 1987), and then the New Jersey Supreme Court decision, 537 A.2d 1227 (1988).

53 851 P.2d 776 (Cal. 1993), cert. denied, 114 S. Ct. 206 (1993).

54 Rather, Anna Johnson was a surrogate gestator in the truer sense-she carried to term a pregnancy which resulted from the in vitro fertilization of Mark Calvert's sperm and Crispina Calvert's egg.

55 I briefly discuss with my students conception resulting from sexual intercourse; artificial insemination by donor, through which a woman conceives a child using the sperm of a man other than her husband; surrogacy, in which a woman conceives a child using the sperm of a man other than her husband with the intent that at the child's birth she will relinquish the child and her parental rights to the genetic father; in vitro fertilization, through which a woman's ovum and a man's sperm are joined together in an artificial medium and the fertilized conceptus is then implanted into the woman; ova donation, through which the sperm of a man and the ovum of a woman other than the man's wife are joined together in vitro with the resulting conceptus being implanted into the man's wife who then carries the pregnancy to term with the intention that the genetic father and the woman who carried the child to term would raise the child (analogously to sperm donation and AID); embryo donation, a variation of egg donation in which the fertilization takes place in the body of the woman donating the egg, with the embryo subsequently being flushed from the body of the egg donor and implanted in the genetic father's wife; and gestational surrogacy through which a woman's ovum and a man's sperm are joined together in vitro with the fertilized conceptus then being implanted into a second woman who carries the child to term and then relinquishes the child to the genetic parents. There are obviously variations on these themes: the “intended parents” (those intending to raise the children resulting from assisted conception) may or may not be married to each other; parents may have no partners at all; parties may choose gamete (GIFT) or zygote (ZIFT) implantation as a variation of in vitro fertilization.

56 See Paul Leavitt, Woman Gives Birth to Her Grandchildren, USA Today, Oct. 14, 1991, at 1 IA.

57 See, e.g., Ariz. Rev. Stat. Ann.§ 25-218 (1991) (prohibiting surrogacy contracts); N.H. Rev. Stat. Ann. §§ 168-B:1-B:32 (l 994) (permitting and regulating surrogacy contracts); Wash. Rev. Code Ann.§§ 26.26.210 to .260 (West Supp. 1987-93) (prohibiting surrogacy contracts and making entering into such contracts a misdemeanor).

58 See, e.g., N.Y. Comp. Codes R. & Regs. tit. 10,§§ 58-7.l to 7.11 (1992).

59 Del Zio v. Presbyterian Hosp., No. 74 Civ. 1782 (S.D.N.Y. Apr. 12, 1978). The hospital defended the destruction of the embryos on the grounds that the in vitro fertilization was an experimental procedure which had been performed without the staff's following appropriate protocol and that the experiment presented a risk to the lives of the patients and any child who may be born as a result of the procedure. Id.

60 556 F. Supp. 157 (N.D. III. 1983).

61 Ill. Rev. Stat. ch. 38, paras. 81-21 et. seq. (1981) (current version at Ill. Ann. Stat. ch. 720, para. 510/l (Smith-Hurd 1993)).

62 See Ill. Rev. Stat. ch. 38, para. 81-26(7) (1981) (current version at Ill. Ann. Stat. ch. 720, para. 510/6 (1993)).

63 David De Voss, Lives in Limbo; Ethical and Legal Implications of Frozen Embryos, 174 Redbook 102 (Feb. 1990).

64 Including Mr. Rios’ adult son by a prior marriage. It was ultimately disclosed that an anonymous sperm donor and not the elder Mr. Rios contributed the sperm to fertilize Ms. Rios’ ova. Id. As of 1991, the Rios’ embryos remained frozen. Judy Licht, Frozen in Time; Storing of Embryos Boosts the Chances of Pregnancy-And Raises Ethical Questions, Wash. Post., Nov. 26, 1991, at ZlO.

65 York v. Jones, 717 F. Supp. 421 (E.D. Va. 1989).

66 Davis v. Davis,.842 S.W.2d 588 (Tenn. 1992), cert. denied, 113 S. Ct. 1259 (1993). By the time the Tennessee Supreme Court issued its opinion in Davis, Ms. Davis had remarried and no longer desired to have the embryos implanted in herself. Rather, she desired that they be donated to a childless couple for implantation. Throughout the proceedings, Mr. Davis remained adamant that .the embryos be destroyed. Id. at 590.

67 In re Quinlan, 355 A.2d 647 (N.J. 1976), cert. denied, 429 U.S. 922 (1976).

68 In 1976, in a landmark decision, the New Jersey Supreme Court authorized Joseph Quinlan, as guardian for his incompetent daughter, to order removal of the ventilator thought by many to be keeping her alive. He did so, but after the ventilator was removed Karen Quinlan breathed on her own. She died in June, 1985. Karen Quinlan, supr. note 3. She was maintained during that nine year period by artificial nutrition and hydration, just as she had been from the time of the event leading to her persistent vegetative state (1975) until the time of the New Jersey Supreme Court's opinion. Ms. Quinlan's parents never sought withdrawal of her artificial nutrition and hydration.

69 The ones soonest to follow Quinla. were ventilator cases, or those involving incompetent, but conscious cancer patients whose parents or guardians sought to have treatment withheld or withdrawn from the patients. Subsequently, however, ventilator cases gave way to feeding tube cases. In those cases, some patients were incompetent, and others were not, but even those who were incompetent were not necessarily in a persistent vegetative state.

70 Most courts had held that competent adult patients had the right to order treatment withheld or withdrawn and that incompetent patients had the same right to have a substitute decision-maker make that decision for them.

71 497 U.S. 261 (1990).

72 Nancy Cruzan's automobile accident occurred in 1983. The United States Supreme Court issued its opinion in the case on June 26, 1990. Id. The Supreme Court had never before decided a withdrawal of treatment case. The Court had denied certiorari in In re Quinlan, 355 A.2d 647 (N.J. 1976), cert. denied, 429 U.S. 922 (1976), and in In r. Storar, 420 N.E.2d 64 (N.Y. 1981), cert. denied, 454 U.S. 858 (1981). The Court had many years earlier decided a refusal case, Jacobson v. Massachusetts, 197 U.S. 11 (1905), holding that under most circumstances one could not decline a small pox vaccination. The basis of the Court's decision there was the police power of the state exercised to protect the public health.

73 Nancy Cruzan was in a persistent vegetative state. Her right to have treatment, in this case, artificial nutrition and hydration, withdrawn was being asserted on her behalf by her parents. Cruzan, 497 U.S. at 261.

74 Id. at 280, 284, 286. In a departure from the position taken by almost all of the lower courts which had heard such cases, the United States Supreme Court decided that those who are incompetent have no inherent right to have surrogates make health care decisions for them. Id. at 286. The Court assumed, without directly deciding, that competen. patients possess a liberty interest in ordering medical treatment withheld or )Withdrawn. Id. at 279. Furthermore, the Court said, it does not violate equal protection principles to deny substitute decision-making to incompetent patients because they are not similarly situated to competent patients. Id. at 287 n.12. It is precisely the competent patient's ability to hear and understand information and to make decisions knowingly and voluntarily that separates competent from incompetent patients. Id. at 279-80, 287 n.12.

75 The power to have a surrogate make decisions for one who is incompetent is relevant not only to young accident victims like Nancy Cruzan but also to older patients who lose capacity through stroke, dementia, or other illness, and who increasingly attempt to provide surrogates for end of life decision-making.

76 See, e.g., Bartling v. Superior Court, 209 Cal. Rptr. 220, 225 (Cal. Ct. App. 1984); In re Quinlan, 355 A.2d 647, 663 (N.J. 1976), cert. denied, 429 U.S. 922 (1976).

77 See, e.g., Conn. Gen. Stat.§§ 19a-570 to 19a-580c (1993) (authorizing, inter alia, execution of living will and/or appointment of health care agent); Mass. Gen. Laws Ann. ch. 201D, §§ 1-17 (West. Supp. 1993) (authorizing appointment of health care proxy).

78 See, e.g., Health Care Surrogate Act, Ill. Comp. Stat. Ann. ch. 755, §§ 40/1-40/55 (Smith Hurd 1993).

79 See generall. 42 U.S.C.A. §§ 1395l(r), 1395cc(f), l395mm(c)(8), l396a(w) (West 1992 & Supp. 1994).

80 42 U.S.C.A. §§ l395cc(f)(1)(A)(i) & 1396a(w)(1)(A)(i) (West 1992 & Supp. 1994).

81 In re Quinlan, 355 A.2d 647 (N.J. 1976), cert. denied, 429 U.S. 922 (1976).

82 Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).

83 Bouvia v. Superior Court, 225 Cal. Rptr. 297 (Cal. Ct. App. 1986) (granting conscious and competent adult patients request to have artificial nutrition and hydration withdrawn).

84 In re Requena, 517 A.2d 886 (N.J. Super. Ct. Ch. Div. 1986), aff'd, 517 A.2d 869 (N.J. Super. Ct. App. Div. 1986).

85 Or through threatened litigation for those institutions refusing to honor a patient's or a surrogate's wishes.

86 While a few states still do not recognize living wills by statute, for example, Mass. Gen. Laws Ann. ch. 201D, §§ 1-17 (West Supp. 1993) (authorizing appointment of he.alth care proxy but making no provision for living wills), virtually all states now provide for some type of advance directive. See, e.g., Conn. Gen. Stat. §§19a-570 to 19a-580c (1993) (authorizing both living wills and health care proxies); Va. Code Ann.§§ 54.1-2981to2993 (Michie 1994) (same). Lawyers must pay particular attention to statutory provisions in counseling clients about end-of-life planning.

87 See, e.g., Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (Mass. 1977) (terminal illness); Quinlan, 355 A.2d 647 (persistent vegetative state).

88 In re Helga Wanglie, No. PX-91-283 (4th Jud. Dist., Dist. Ct., Prob. Div., Hennepin Co., Minn. 1991); In re Baby “K”, 16 F.3d 590 (4th Cir. 1994) (Baby “K“'s mother, although not her father, desired that her treatment be continued.). For an in-depth discussion of In re Baby “K,” see George J. Annas, Asking the Courts to Set the Standard of Emergency Care-The Case of Baby K, 330 New Eng. J. Med. 1542 (1994).

89 In re Helga Wanglie, supr. note 88; In re Baby “K,” supr. note 88.

90 During the first 16 months of her life, Baby “K” spent 120 days in the hospital at a cost of $174,000. Bill Miller, Care Ordered for Girl with Brain Damage; Federal Law Cited in Fairfax. Case, WASH. POST, Feb. 11, 1994, at D1. That figure does not include the cost of the nursing home which provides full time care to Baby “K.” Helga Wanglie's medical bills during the final year of her life, when she was irreversibly comatose, totaled approximately $800,000. Judy Mann, When the Hospital Sues to Pull the Plug, WASH. PosT, May 31, 1991, at B3.

91 The patient will always draw great sympathy because of, for example, age (young or old), or because of well justified fears of discrimination, for example, on the basis of race or ethnicity or disability.

92 See infra notes 120-28 and accompanying discussion of access to care issues.

93 James, Rachels, the End of Ltfe, 170-80 (1987); David R. Schanker, of Suicide Machines, Euthanasia Legislation, and the Health Care Crisis,68 Ind. L. J. 977, 982 (1993);Google Scholar Hilary Hughes Young, Assisted Suicide and Physician Liability, 11 Rev. Lmo. 623, 635-36 (1992).

94 C. Ann Potter, Will the “Right to Die” Become a License to Kill? The Growth of Euthanasia in America, 19 J. Legis. 31 (1993); Schanker, supr. note 93, at 981, 1006-07 (1993); Young, supr. note 93, at 635-36 (1992). Cf. Bouvia v. Superior Court, 225 Cal, Rptr. 297, 307 (Cal. Rptr. App. 1986) (Compton, J., concurring) where a state appellate court judge suggested that “instead of frustrating” a competent patient's wish to die through withdrawal of treatment, the “state and the medical profession … should be attempting to relieve her suffering by permitting and in fact assisting her to die with ease and dignity.“

95 “The cessation of life; … defined by physicians as a total stoppage of the circulation of the blood, and a cessation of the animal and vital functions consequent thereon, such as respiration, pulsation, etc.” Black's Law Dictionary 488 (4th ed. 1968). See, e.g., Smith v. Smith, 317 S.W.2d 275 (Ark. 1958) (refusing to find woman who never regained consciousness after automobile accident to have “died” as of date of accident; “death” did not occur until to seventeen days following accident when her circulatory and respiratory functions ceased).

96 Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, A Definition of Irreversible Coma, 205 JAMA 337 (1968).

97 See, e.g., Conn. Gen. Stat. Ann. § l 9a-504a (1992); Mich. Comp. Laws Ann. § 333.1033 (1992).

98 The definition of death is most often employed in organ donation situations where, before cadaveric organs may be gathered for transplantation, the patient must be declared dead (generally “brain dead,” since in order to be suitable for transplantation most organs must be maintained inside the donor's body until near the time of transplantation). For that reason, brain dead organ donors are maintained by artificial means until consent is secured for the transplantation and the surgery occurs. The definition of death is also important in instances where a family might demand continued treatment of a patient, because there is no legal or ethical obligation on a health care provider to provide futile treatment, which would include treatment to one who is dead. See, e.g., Barber v. Superior Court, 195 Cal. Rptr. 484, 491 (Cal. Ct. App. 1983).

99 See, e.g., Steven Goldberg, The Changing Face of Death: Computers, Consciousness, and Nancy Cruzan, 43 Stan. L. Rev. 659 (1991); Kevin P. Quinn, The Best Interests of Incompetent Patients: The Capacity for Interpersonal Relationships as a Standard for Decisionmaking, 76 Cal. L. Rev. 897 (1988).

100 But see Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (Mass. 1977); In re Conroy, 486 A.2d 1209 (N.J. 1985); In re Westchester County Medical Ctr. ex rel. O'Connor, 531N.E.2d607 (N.Y. 1988); In re Storar, 420 N.E.2d 64 (N.Y. 1981) where attempts were made to withdraw or withhold treatment from patients neither brain dead nor persistently vegetative.

101 The most likely context for such extension would be in withdrawal of treatment, since those in persistent vegetative states or suffering from severe dementia are unlikely to be organ donors. The analogous development in organ donor law is in the direction of presumed consent laws; that is, the law would establish a presumption that, absent evidence to the contrary, those in positions to be organ donors would give their consent to such donation. See Aaron Spital, The Shortage of Organs for Transplantation: Where Do We Go from Here?, 325 New Eng. J. Med. 1243, 1244 (1991); Robert M. Veatch, Routine Inquiry About Organ Donation-An Alternative to Presumed Consent, 325 New Eng. J. Med. 1246 (1991).

102 It's Over, Debbie, 259 JAMA 272 (1988).

103 Not everyone believed the account. Some believed that the article was written for the purpose of provoking discussion. See, e.g., Mark Bloom, Article Embroils JAMA in Ethical Controversy: Publication of Unsigned Account of Apparent Mercy Killing Draws Protests and Raises Legal Problems, 239 SCI. 1235 (1988); Diane Cyr, Courageous or Careless? Medical Journal Editor Invites Controversy with Mercy Killing Story, 17 Folio 63 (1988).

104 Timothy E., Quill, Death and Dignity: A Case of Individualized Decision Making,324 New Eng. J. Med. 691 (1991).Google Scholar

105 Turning Point (ABC television broadcast, May 4, 1994).

106 The 1994 Elections: Ballot Issues; Voters in Oregon Allow Doctors to Help the Terminally III Die, N. Y. Times, Nov. 11, 1994, at A28. Prior to the Oregon vote, referenda, which would have provided some citizens with the power to request the assistance of others in ending their lives and would have immunized those assisting from civil or criminal liability, had been rejected by voters in Washington and California. David S. Broder, Texans Back Lottery, Loans for College, Wash. Post, Nov. 7, 1991, at A29 (Washington); ‘92-The People Decide: A Special Section About the Election, Atlanta J, & Constitution, Nov. 4, 1992, at B3 (California).

107 Lee v. Oregon, No. 94-6467-HO (D. Ore. Dec. 27, 1994), reported at Patient Management: Judge Issues Preliminary Injunction Against Physician-Assisted Law, Bna Health Care Daily (Jan. 4, 1995).

108 AIDS cases were first reported in 1981. James W. Curran et al., The Epidemiology of AIDS: Current Status and Future Prospects, 229 ScI. 1352, 1352 (1985). The first reported legal cases relating to AIDS began to appear in the mid-1980s. A Lexis search using the “Mega” library and the search “Acquired Immune Deficiency Syndrome” revealed 10 cases before 1986, 36 before 1987, 229 before 1990, and 573 before 1995.

109 Rasmussen v. South Florida Blood Service, 500 So. 2d 533 (Fla. 1987); Tarrant County Hosp. Dist. v. Hughes, 734 S.W.2d 675 (Tex. Ct. App. 1987), cert. denied, 108 S. Ct. 1027 (1988).

110 District 27 Community School Bd. v. Board of Educ., 502 N.Y.S.2d 325 (N.Y. Sup. Ct. 1986).

111 Chalk v. United States Dist. Court Cent. Dist., 840 F.2d 701 (9th Cir. 1988).

112 Neither I nor anyone else on our faculty has yet developed a course devoted entirely to the study of AIDS-related material. Development of such a course is an attractive idea, but as all teachers know, one of the challenges that faces all of us is how to squeeze our many varied interests into a limited curriculum and limited time.

113 42 U.S.C.A. §§ 12101-34 (West Supp. 1994).

114 29 U.S.C.A. § 794 (West Supp. 1994).

115 See supr. text following note 35 and accompanying note 36 for a discussion of the necessity for health law practitioners to have knowledge of the medical system and how it works, clinically, as well as within the context of the law.

116 Individual cases, however, frequently cause us to focus on individual disorders or disabilities. For example, when I teach Lake v. Cameron, 364 F.2d 657 (D.C. Cir. 1966) and Dep 't Human Servs: v. Northern, 563 S.W.2d 197 (Tenn. Ct. App. 1978), cert. denied, 575 S.W.2d 946 (Tenn. 1978), appeal dismissed as moot, 436 U.S. 923 (1978), some of our discussion focuses on dementia related disorders and disabilities.

117 From White Dwarf to Red Giant, supr. note 9, at 565.

118 For example, landlords, employers, or school districts.

119 See supra note 13.

120 See, e.g., Burditt v. United States Dep't of Health and Human Servs., 934 F.2d 1362 (5th Cir. 1991); Campbell v. Mincey, 413 F. Supp. 16 (N.D. Miss. 1975), aff'd, 542 F.2d 573 (5th Cir. 1976); Smith v. Richmond Memorial Hosp., 416 S.E.2d 689 (Va. 1992), cert. denied, 113 S. Ct. 442 (1992).

121 Examples of access issues on the societal level would include allocation of scarce medical resources, such as organs for transplantation or intensive care unit beds, or access (or limitation of access) in general as provided within Oregon's Medicaid Plan. OR. Rev. STAT.§§ 414.036, 414.038, 414.039, 414.065, 414.705-.750 (1993).

122 A number of cases have been decided concerning the interpretation and applicability of the Examination and Treatment for Emergency Medical Conditions and Women in Labor Act, 42 U.S.C.A. § 1395dd (West 1992). See, e.g., cases cited supr. note 120, raising issues of access based on common law and federal constitutional grounds.

123 See, e.g., Pereira v. Kozlowski, 996 F.2d 723 (4th Cir. 1993); Dexter v. Kirschner, 984 F.2d 979 (9th Cir. 1993); Allen v. Mansour, 681 F. Supp. 1232 (E.D. Mich. 1986).

124 See, e.g., N. Y. Pub. Health LAW§§ 4300-4308, 4351 (McKinney 1985 & 1994).

125 But see In re T.A.C.P., 609 So. 2d 588 (Fla. 1992) (request by parents of anencephalic infant to allow child to be declared “dead” because of anencephaly and, therefore, to be eligible organ donor); Brown v. Delaware Valley Transplant Program, 539 A.2d 1372 (Pa. Super. Ct. 1988) (action for damages by family following organ gathering from then unidentified gunshot victim without consent of victim or family).

126 See, e.g., Roger W. Evans et al., The Quality of Life of Patients with End-Stage Renal Disease, 312 New Eng. J. Med. 553 (1985); John K. Iglehart, The American Health Care System: The End Stage Renal Disease Program, 328 New Eng. J. Med. 366 (1993); Spital, supr. note 101; Veatch, supr. note 101.

127 There are also many thoughtful pieces available to aid students in thinking about allocation of scarce resources in general. See, e.g., Calabresi & Bobbitt, supr. note 6; Katz & Capron, supr. note 6; Daniel Callahan, Rationing Medical Progress: The Way to Affordable Health Care, 322 New Eng. J. Med. 1810 (1990); James F. Childress, Who Shall Live When Not All Can Live?, 53 Soundings 339 (1970).

128 Or. Rev. Stat.,§§ 414.036, 414.038, 414.039, 414.065, 414.705-.750,