When physicians balk at futile care: Implications of the disability rights laws

Northwestern University Law Review

Volumn 91, Issue 3, 1997, Pages 798-861

  Peters Jr , Philip G ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; ADOLESCENT; ADULT; AMERICANS WITH DISABILITIES ACT 1990; ARTICLE; CONFLICT; DEATH AND EUTHANASIA; DECISION MAKING; DISABLED PERSON; FAMILY; GOVERNMENT; GROUP PROCESS; HEALTH CARE ORGANIZATION; HUMAN; JURISPRUDENCE; JUVENILE; LEGAL APPROACH; LONG TERM CARE; PASSIVE EUTHANASIA; PATIENT SELECTION; PATIENT TRANSPORT; PERSISTENT VEGETATIVE STATE; PHYSICIAN; PHYSICIAN ATTITUDE; POLITICS; QUALITY OF LIFE; REHABILITATION ACT 1973; RESOURCE ALLOCATION; SOCIAL PSYCHOLOGY; TREATMENT OUTCOME; TREATMENT WITHDRAWAL; UNITED STATES;

AMERICANS WITH DISABILITIES ACT 1990; DEATH AND EUTHANASIA; LEGAL APPROACH; REHABILITATION ACT 1973;

ACQUIRED IMMUNODEFICIENCY SYNDROME; ADOLESCENT; ADULT; DECISION MAKING; DISABLED PERSONS; DISSENT AND DISPUTES; EUTHANASIA, PASSIVE; FAMILY; FEDERAL GOVERNMENT; GOVERNMENT; GROUP PROCESSES; HEALTH CARE RATIONING; HUMANS; JURISPRUDENCE; LIFE SUPPORT CARE; MEDICAL FUTILITY; MINORS; PATIENT SELECTION; PATIENT TRANSFER; PERSISTENT VEGETATIVE STATE; PHYSICIAN'S ROLE; PHYSICIANS; POLITICS; PREJUDICE; QUALITY OF LIFE; RESOURCE ALLOCATION; UNITED STATES; WITHHOLDING TREATMENT;

EID: 0031082563     PISSN: 00293571     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (322)

1. In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994).
2. In re Wanglie, No. PX-91-283 (Minn. Dist. Ct. 1991), reprinted in 7 ISSUES L. & MED. 369 (1991). Providers proposed to unplug the respirator and pull the feeding tubes from a non-terminally ill comatose patient over her husband's objections. The providers unsuccessfully sought a judicial determination that the patient's husband was not a competent decisionmaker, rather than raising the futility issue directly.
3. See Alexander M. Capron, Baby Ryan and Virtual Futility, HASTINGS CENTER REP., Mar.-Apr. 1995, at 20. According to this account, two hospitals refused to continue to provide dialysis for a premature newborn with brain damage, an intestinal blockage, and kidney malfunction because "long-term dialysis would not only be inappropriate but also would be immoral" because it would prolong the boy's agony with "no likelihood of a good outcome." The family obtained a court order for further treatment and eventually located a facility that would willingly provide Ryan with treatment. His condition then improved after intestinal surgery. The first hospital had contended that the family's request for aggressive care constituted child abuse.
4. For example, in 1992, a court in the United Kingdom ruled that a London hospital could withhold life support from a severely brain-damaged eighteen-month-old child on the ground that it had "too few resources to treat all the patients whom they would like to treat." Re J [A Minor][Medical Treatment], C.A. (10 June 1992), quoted in Ross Kessel, British Judges Cannot Order Doctors to Treat, HASTINGS CENTER REP., July-Aug. 1992, at 3. A Georgia trial court refused the request of several doctors to withdraw life support from a teenager in a condition "between a stupor and a coma." In re Doe, C.A. No. D-93064 (Ga. Super. Ct. 1991), reprinted in 7 ISSUES L. & MED. 521, 531 (1992), aff'd, 418 S.E.2d 3, 7 (1992). A Texas court reportedly upheld a doctor's withdrawal of hemodialysis on the grounds of medical futility. See Mark A. Hall, Rationing Health Care at the Bedside, 69 N.Y.U. L. REV. 693, 710 n.56 (1994) (citing Duensing v. Southwest Tex. Methodist Hosp., No. SA-87-CA-1119 (W.D. Tex. Dec. 22, 1988) (granting defendant summary judgment)). For other examples, see infra text accompanying notes 26-33. Obviously, most unilateral decisions by providers to cut back on care are not litigated. See Hall, supra, at 723-24 (describing the medical literature acknowledging cessation of CPR efforts from debilitated patients and from severely ill newborns).
5. For example, in 1992, a court in the United Kingdom ruled that a London hospital could withhold life support from a severely brain-damaged eighteen-month-old child on the ground that it had "too few resources to treat all the patients whom they would like to treat." Re J [A Minor][Medical Treatment], C.A. (10 June 1992), quoted in Ross Kessel, British Judges Cannot Order Doctors to Treat, HASTINGS CENTER REP., July-Aug. 1992, at 3. A Georgia trial court refused the request of several doctors to withdraw life support from a teenager in a condition "between a stupor and a coma." In re Doe, C.A. No. D-93064 (Ga. Super. Ct. 1991), reprinted in 7 ISSUES L. & MED. 521, 531 (1992), aff'd, 418 S.E.2d 3, 7 (1992). A Texas court reportedly upheld a doctor's withdrawal of hemodialysis on the grounds of medical futility. See Mark A. Hall, Rationing Health Care at the Bedside, 69 N.Y.U. L. REV. 693, 710 n.56 (1994) (citing Duensing v. Southwest Tex. Methodist Hosp., No. SA-87-CA-1119 (W.D. Tex. Dec. 22, 1988) (granting defendant summary judgment)). For other examples, see infra text accompanying notes 26-33. Obviously, most unilateral decisions by providers to cut back on care are not litigated. See Hall, supra, at 723-24 (describing the medical literature acknowledging cessation of CPR efforts from debilitated patients and from severely ill newborns).
6. In re Quinlan, 355 A.2d 647 (N.J. 1976).
7. Cruzan v. Director, Mo. Dep't of Health, 492 U.S. 261 (1990).
8. See, e.g., Susanna E. Bedell et al., Survival After Cardiopulmonary Resuscitation in the Hospital, 309 NEW ENG. J. MED. 569 (1983); William A. Gray et al., Unsuccessful Emergency Resuscitation - Are Continued Efforts in the Emergency Department Justified?, 325 NEW ENG. J. MED. 1393 (1991); Arnold L. Johnson et al., Results of Cardiac Resuscitation in 552 Patients, 20 AM. J. CARDIOLOGY 831 (1967); George E. Taffet et al., In-Hospital Cardiopulmonary Resuscitation, 260 JAMA 2069 (1988).
9. See, e.g., Susanna E. Bedell et al., Survival After Cardiopulmonary Resuscitation in the Hospital, 309 NEW ENG. J. MED. 569 (1983); William A. Gray et al., Unsuccessful Emergency Resuscitation - Are Continued Efforts in the Emergency Department Justified?, 325 NEW ENG. J. MED. 1393 (1991); Arnold L. Johnson et al., Results of Cardiac Resuscitation in 552 Patients, 20 AM. J. CARDIOLOGY 831 (1967); George E. Taffet et al., In-Hospital Cardiopulmonary Resuscitation, 260 JAMA 2069 (1988).
10. See, e.g., Susanna E. Bedell et al., Survival After Cardiopulmonary Resuscitation in the Hospital, 309 NEW ENG. J. MED. 569 (1983); William A. Gray et al., Unsuccessful Emergency Resuscitation - Are Continued Efforts in the Emergency Department Justified?, 325 NEW ENG. J. MED. 1393 (1991); Arnold L. Johnson et al., Results of Cardiac Resuscitation in 552 Patients, 20 AM. J. CARDIOLOGY 831 (1967); George E. Taffet et al., In-Hospital Cardiopulmonary Resuscitation, 260 JAMA 2069 (1988).
11. See, e.g., Susanna E. Bedell et al., Survival After Cardiopulmonary Resuscitation in the Hospital, 309 NEW ENG. J. MED. 569 (1983); William A. Gray et al., Unsuccessful Emergency Resuscitation - Are Continued Efforts in the Emergency Department Justified?, 325 NEW ENG. J. MED. 1393 (1991); Arnold L. Johnson et al., Results of Cardiac Resuscitation in 552 Patients, 20 AM. J. CARDIOLOGY 831 (1967); George E. Taffet et al., In-Hospital Cardiopulmonary Resuscitation, 260 JAMA 2069 (1988).
12. See, e.g., Donald J. Murphy, Do-Not-Resuscitate Orders: Time for Reappraisal in Longterm-Care Institutions, 260 JAMA 2098 (1988); Tom Tomlinson & Howard Brady, Futility and the Ethics of Resuscitation, 264 JAMA 1276 (1990). For an extended review of the futility debate, see TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 212-14 (4th ed. 1994); Kathleen M. Boozang, Death Wish: Resuscitating Self-Determination, 35 ARIZ. L. REV. 23 (1993); Mary A. Crossley, Medical Futility and Disability Discrimination, 81 IOWA L. REV. 179, 182-202 (1995); Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 HASTINGS L.J. 1241, 1248-59 (1993).
13. See, e.g., Donald J. Murphy, Do-Not-Resuscitate Orders: Time for Reappraisal in Longterm-Care Institutions, 260 JAMA 2098 (1988); Tom Tomlinson & Howard Brady, Futility and the Ethics of Resuscitation, 264 JAMA 1276 (1990). For an extended review of the futility debate, see TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 212-14 (4th ed. 1994); Kathleen M. Boozang, Death Wish: Resuscitating Self-Determination, 35 ARIZ. L. REV. 23 (1993); Mary A. Crossley, Medical Futility and Disability Discrimination, 81 IOWA L. REV. 179, 182-202 (1995); Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 HASTINGS L.J. 1241, 1248-59 (1993).
14. See, e.g., Donald J. Murphy, Do-Not-Resuscitate Orders: Time for Reappraisal in Longterm-Care Institutions, 260 JAMA 2098 (1988); Tom Tomlinson & Howard Brady, Futility and the Ethics of Resuscitation, 264 JAMA 1276 (1990). For an extended review of the futility debate, see TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 212-14 (4th ed. 1994); Kathleen M. Boozang, Death Wish: Resuscitating Self-Determination, 35 ARIZ. L. REV. 23 (1993); Mary A. Crossley, Medical Futility and Disability Discrimination, 81 IOWA L. REV. 179, 182-202 (1995); Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 HASTINGS L.J. 1241, 1248-59 (1993).
15. See, e.g., Donald J. Murphy, Do-Not-Resuscitate Orders: Time for Reappraisal in Longterm-Care Institutions, 260 JAMA 2098 (1988); Tom Tomlinson & Howard Brady, Futility and the Ethics of Resuscitation, 264 JAMA 1276 (1990). For an extended review of the futility debate, see TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 212-14 (4th ed. 1994); Kathleen M. Boozang, Death Wish: Resuscitating Self-Determination, 35 ARIZ. L. REV. 23 (1993); Mary A. Crossley, Medical Futility and Disability Discrimination, 81 IOWA L. REV. 179, 182-202 (1995); Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 HASTINGS L.J. 1241, 1248-59 (1993).
16. See, e.g., Donald J. Murphy, Do-Not-Resuscitate Orders: Time for Reappraisal in Longterm-Care Institutions, 260 JAMA 2098 (1988); Tom Tomlinson & Howard Brady, Futility and the Ethics of Resuscitation, 264 JAMA 1276 (1990). For an extended review of the futility debate, see TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 212-14 (4th ed. 1994); Kathleen M. Boozang, Death Wish: Resuscitating Self-Determination, 35 ARIZ. L. REV. 23 (1993); Mary A. Crossley, Medical Futility and Disability Discrimination, 81 IOWA L. REV. 179, 182-202 (1995); Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 HASTINGS L.J. 1241, 1248-59 (1993).
17. See, e.g., Donald J. Murphy, Do-Not-Resuscitate Orders: Time for Reappraisal in Longterm-Care Institutions, 260 JAMA 2098 (1988); Tom Tomlinson & Howard Brady, Futility and the Ethics of Resuscitation, 264 JAMA 1276 (1990). For an extended review of the futility debate, see TOM L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 212-14 (4th ed. 1994); Kathleen M. Boozang, Death Wish: Resuscitating Self-Determination, 35 ARIZ. L. REV. 23 (1993); Mary A. Crossley, Medical Futility and Disability Discrimination, 81 IOWA L. REV. 179, 182-202 (1995); Judith F. Daar, A Clash at the Bedside: Patient Autonomy v. A Physician's Professional Conscience, 44 HASTINGS L.J. 1241, 1248-59 (1993).
18. See, e.g., J. Chris Hackler & F. Charles Miller, Family Consent Orders Not to Resuscitate: Reconsidering Hospital Policy, 264 JAMA 1281 (1990); Murphy, supra note 8; Lawrence J. Schneiderman et al., Medical Futility: Its Meaning and Ethical Implications, 112 ANNALS INTERNAL MED. 949 (1990).
19. See, e.g., J. Chris Hackler & F. Charles Miller, Family Consent Orders Not to Resuscitate: Reconsidering Hospital Policy, 264 JAMA 1281 (1990); Murphy, supra note 8; Lawrence J. Schneiderman et al., Medical Futility: Its Meaning and Ethical Implications, 112 ANNALS INTERNAL MED. 949 (1990).
20. See, e.g., Schneiderman, supra note 9; supra text accompanying notes 2-4.
21. Daar, supra note 8, at 1256-57 (citing Leslie J. Blackhall, Must We Always Use CPR?, 317 NEW ENG. J. MED. 1281, 1284 (1987) (arguing that when CPR is of no benefit, it should not be offered to patients)); Donald J. Murphy & David B. Matchar, Life-Sustaining Therapy: A Model for Appropriate Use, 264 JAMA 2103 (1990) (arguing that medically or economically inappropriate treatments should not be automatically offered); Schneiderman, supra note 9, at 949 (arguing that treatments that do not improve the person as a whole are futile and may be withheld by physicians); Tom Tomlinson & Howard Brody, Futility and the Ethics of Resuscitation, 264 JAMA 1276, 1278-79 (1990) (arguing that physicians should be able to restrict alternatives offered to patients for sake of physician integrity and patient autonomy); see Murphy, supra note 8; Paris, infra note 33.
22. Daar, supra note 8, at 1256-57 (citing Leslie J. Blackhall, Must We Always Use CPR?, 317 NEW ENG. J. MED. 1281, 1284 (1987) (arguing that when CPR is of no benefit, it should not be offered to patients)); Donald J. Murphy & David B. Matchar, Life-Sustaining Therapy: A Model for Appropriate Use, 264 JAMA 2103 (1990) (arguing that medically or economically inappropriate treatments should not be automatically offered); Schneiderman, supra note 9, at 949 (arguing that treatments that do not improve the person as a whole are futile and may be withheld by physicians); Tom Tomlinson & Howard Brody, Futility and the Ethics of Resuscitation, 264 JAMA 1276, 1278-79 (1990) (arguing that physicians should be able to restrict alternatives offered to patients for sake of physician integrity and patient autonomy); see Murphy, supra note 8; Paris, infra note 33.
23. Daar, supra note 8, at 1256-57 (citing Leslie J. Blackhall, Must We Always Use CPR?, 317 NEW ENG. J. MED. 1281, 1284 (1987) (arguing that when CPR is of no benefit, it should not be offered to patients)); Donald J. Murphy & David B. Matchar, Life-Sustaining Therapy: A Model for Appropriate Use, 264 JAMA 2103 (1990) (arguing that medically or economically inappropriate treatments should not be automatically offered); Schneiderman, supra note 9, at 949 (arguing that treatments that do not improve the person as a whole are futile and may be withheld by physicians); Tom Tomlinson & Howard Brody, Futility and the Ethics of Resuscitation, 264 JAMA 1276, 1278-79 (1990) (arguing that physicians should be able to restrict alternatives offered to patients for sake of physician integrity and patient autonomy); see Murphy, supra note 8; Paris, infra note 33.
24. See, e.g., John D. Lantos et al., The Illusion of Futility in Clinical Practice, 87 AM. J. MED. 81, 83 (1989); D.B. Waisel & R.D. Truog, The Cardiopulmonary Resuscitation-Not-Indicated Order: Futility Revisited, 122 ANNALS INTERNAL MED. 304 (1995); Stuart J. Youngner, Who Defines Futility?, 260 JAMA 2094 (1988).
25. See, e.g., John D. Lantos et al., The Illusion of Futility in Clinical Practice, 87 AM. J. MED. 81, 83 (1989); D.B. Waisel & R.D. Truog, The Cardiopulmonary Resuscitation-Not-Indicated Order: Futility Revisited, 122 ANNALS INTERNAL MED. 304 (1995); Stuart J. Youngner, Who Defines Futility?, 260 JAMA 2094 (1988).
26. See, e.g., John D. Lantos et al., The Illusion of Futility in Clinical Practice, 87 AM. J. MED. 81, 83 (1989); D.B. Waisel & R.D. Truog, The Cardiopulmonary Resuscitation-Not-Indicated Order: Futility Revisited, 122 ANNALS INTERNAL MED. 304 (1995); Stuart J. Youngner, Who Defines Futility?, 260 JAMA 2094 (1988).
27. BEAUCHAMP & CHILDRESS, supra note 8, at 212-13.
28. See infra text accompanying notes 225-30.
29. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 212 (characterizing these treatments as optional); Daar, supra note 8, at 1255 ("If a treatment will not produce a benefit sought by the patient, it can be considered futile."). The AMA believes that treatments may be considered futile if they would not achieve the goals expressed by the informed patient. AMA COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, Guidelines for the Appropriate Use of Do-Not-Resuscitate Orders, 265 JAMA 1868, 1870 (1991).
30. Steven H. Miles, Medical Futility, 20 LAW MED. & HEALTH CARE 310 (1992).
31. BEAUCHAMP & CHILDRESS, supra note 8, at 289 (describing this viewpoint); Gray, supra note 7.
32. BEAUCHAMP & CHILDRESS, supra note 8, at 289-90.
33. See Daar, supra note 8, at 1254; Youngner, supra note 12, at 2095.
34. BEAUCHAMP & CHILDRESS, supra note 8, at 213.
35. Id. at 289.
36. A useful summary of her case appears in the Appendix of BEAUCHAMP & CHILDRESS, supra note 8, at 517. The probate court opinion is reprinted in 7 ISSUES L. & MED. 369 (1991). Further information can be found in Alexander M. Capron, In re Helga Wanglie, HASTINGS CENTER REP., Sept.-Oct. 1991, at 26; Ronald E. Cranford, Helga Wanglie's Ventilator, HASTINGS CENTER REP., July-Aug. 1991, at 23; and, Steven H. Miles, Informed Demand for "Non-Beneficial" Medical Treatment, 325 NEW ENG. J. MED. 512 (1991).
37. A useful summary of her case appears in the Appendix of BEAUCHAMP & CHILDRESS, supra note 8, at 517. The probate court opinion is reprinted in 7 ISSUES L. & MED. 369 (1991). Further information can be found in Alexander M. Capron, In re Helga Wanglie, HASTINGS CENTER REP., Sept.-Oct. 1991, at 26; Ronald E. Cranford, Helga Wanglie's Ventilator, HASTINGS CENTER REP., July-Aug. 1991, at 23; and, Steven H. Miles, Informed Demand for "Non-Beneficial" Medical Treatment, 325 NEW ENG. J. MED. 512 (1991).
38. A useful summary of her case appears in the Appendix of BEAUCHAMP & CHILDRESS, supra note 8, at 517. The probate court opinion is reprinted in 7 ISSUES L. & MED. 369 (1991). Further information can be found in Alexander M. Capron, In re Helga Wanglie, HASTINGS CENTER REP., Sept.-Oct. 1991, at 26; Ronald E. Cranford, Helga Wanglie's Ventilator, HASTINGS CENTER REP., July-Aug. 1991, at 23; and, Steven H. Miles, Informed Demand for "Non-Beneficial" Medical Treatment, 325 NEW ENG. J. MED. 512 (1991).
39. Cranford, supra note 22, at 23.
40. Id.
41. After many conferences attempting to resolve this dispute, a physician at the medical center unsuccessfully attempted to have a conservator appointed for Mrs. Wanglie. Capron, supra note 22, at 26. The probate judge concluded that Mr. Wanglie was in the best position to protect his wife's preferences. In re Wanglie, reprinted in 7 ISSUES L. & MED. 369, 372 (1991).
42. Benjamin Weiser, A Question of Letting Go: Child's Trauma Drives Doctors to Reexamine Ethical Role, WASH. POST, July 14, 1991, at Al.
43. Id. She eventually died, but aggressive care was not withheld.
44. Id.
45. Baby Terry's litigation is described in James Bopp, Jr. & Richard E. Coleson, Child Abuse by Whom? - Parental Rights and Judicial Competency Determinations: The Baby K and Baby Terry Cases, 20 OHIO N.U. L. REV. 821, 825-27 (1994).
46. Id. at 827, 835.
47. The Genesee Circuit affirmed the probate court ruling and denied a stay pending further appeal. Id. at 826-27.
48. Ronald Smothers, Atlanta Court Bars Efforts to End Life Support for Stricken Girl, N.Y. TIMES, Oct. 18, 1991, at A10. The hospital went to court seeking permission to cease aggressive care. Her mother did not object, but her father did. The court left the decision in the hands of the parents. Id.; In re Doe, C.A. No. D-93064 (Ga. Super. 1991), reprinted in 7 ISSUES L. & MED. 521 (1992), aff'd, 418 S.E.2d 3, 7 (1992).
49. John J. Paris et al., Physicians' Refusal of Requested Treatment: The Case of Baby L, 322 NEW ENG. J. MED. 1012 (1990). Her physicians unsuccessfully urged her parents not to place her on a respirator in the event that she experienced breathing difficulties. The mother refused to consent and sought judicial protection. A pediatric neurologist retained by the guardian ad litem to evaluate the baby's condition agreed to assume the baby's care. Baby L's expenses, which were in excess of one million dollars, were covered by insurance.
50. They may, however, be asked to ignore the patient's quality of life when making decisions about life-sustaining care. See infra text accompanying notes 143-57.
51. See, e.g., David C. Hadorn, The Problem of Discrimination in Health Care Priority Setting, 268 JAMA 1454, 1457-58 (1992) (noting poorer outcomes commonly associated with de facto disabilities such as severe diabetes or cancer); David Orentlicher, Rationing and the Americans with Disabilities Act, 271 JAMA 308, 310 (1994) (noting that patients with pulmonary disease are poor candidates for coronary bypass surgery).
52. See, e.g., David C. Hadorn, The Problem of Discrimination in Health Care Priority Setting, 268 JAMA 1454, 1457-58 (1992) (noting poorer outcomes commonly associated with de facto disabilities such as severe diabetes or cancer); David Orentlicher, Rationing and the Americans with Disabilities Act, 271 JAMA 308, 310 (1994) (noting that patients with pulmonary disease are poor candidates for coronary bypass surgery).
53. Mary Crossley gives the example of an HIV-infected child with an unrelated perforated eardrum. Mary A. Crossley, Of Diagnoses and Discrimination: Discriminatory Nontreatment of Infants with HIV Infection, 93 COLUM. L. REV. 1581, 1650 (1993). Because of this child's HIV status, she is more likely than other children to become infected if corrective surgery is performed on her eardrum. As a result, she may be better off with an alternative treatment.
54. It is less controversial to examine quantitative factors than to assess a disabled person's quality of life because quantitative factors do not suggest that a disabled person's life is less valuable. As suggested in the text, however, their use can still potentially violate the disability rights laws. For a brief discussion of the issues in connection with decisions about the patient's best interests, see infra notes 140-41. For a brief introduction to the issues raised when quantitative factors are used to determine whether requested care is cost-effective, see infra note 238 and text accompanying notes 234-40.
55. Jane Bryant Quinn, Taking Back Their Health Care, NEWSWEEK, June 27, 1994, at 36.
56. James Bopp, Jr., & Daniel Avila, When Worlds Collide: Disability Rights and Medical Prerogatives in Matters of Life and Death, 7 HEC FORUM 132 (1995); accord Bopp & Coleson, supra note 29, at 835-37.
57. See Bopp & Coleson, supra note 29, at 843 (stating that courts and guardians exercising power conferred by state courts or statutes are restricted); see also Bopp & Avila, supra note 39, at 146-47 (same); Crossley, supra note 36, at 1600-01 (noting that, as a practical matter, medical decisions for many children born with HIV infection are made by agents of the state). For a further discussion of these implications, see infra text accompanying notes 176-83.
58. See Bopp & Avila, supra note 39, at 146-47.
59. 29 U.S.C. § 794(a) (1994). Section 504 of the Rehabilitation Act, as amended, provides as follows: "No otherwise qualified individual with a disability . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance . . . ."
60. 42 U.S.C. §§ 12101-12213 (1994).
61. Id. §§ 12112, 12131, 12181(7), 12182; 28 C.F.R. § 36.104 (1995) (establishing that public accommodations include the professional office of a health care provider, hospital or other similar service establishment); H.R. REP. No. 101-485, pt. 4, at 55-56 (1990), reprinted in 1990 U.S.C.C.A.N. 544-45. Public accommodations must also "affect commerce." 42 U.S.C. § 12181(7). Furthermore, in some situations individual providers may not qualify as public accommodations. See Aikins v. St. Helena Hosp., 843 F. Supp. 1329 (N.D. Cal. 1994) (holding that failure to provide interpreter for patient's spouse did not give rise to action against physician who did not have any measure of control over the hospital providing the services).
62. U.S.C. § 12102(2) (1994); 29 U.S.C. § 706(8)(B) (1994).
63. 28 C.F.R. § 36.104 (1995).
64. Orentlicher, supra note 35, at 309.
65. See Crossley, supra note 8, at 212-13 (noting that it is nearly impossible that someone who is denied life-sustaining treatment would not also qualify as "disabled").
66. Section 504 is short and uses very general language. The regulations implementing it provide more detailed guidance. By contrast, the ADA is far more detailed than Section 504. The ADA has separate titles governing employment, government agencies, and public accommodations. Each has its own substantive prohibitions and, in some instances, each uses different terminology. In addition, each title has its own implementing regulations.
67. Treatment decisions that do not expressly take disability into account, but which have a disproportionate impact on disabled persons (such as a limit on the length of insured hospital stays) are also prohibited under some circumstances by the antidiscrimination laws. However, the legal test governing these cases may be different under Section 504 than under the ADA. The Supreme Court has assumed, without deciding, that Section 504 applies not only to facially disparate treatment but also to facially neutral conduct that has a disproportionate impact on disabled patients (such as a limit on insured hospital stays). Alexander v. Choate, 469 U.S. 287, 292-302 (1985); 28 C.F.R. § 35.130 (1995). The ADA appears to govern both kinds of discrimination explicitly. For example, Title III of the ADA prohibits the imposition of "eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities . . ., unless such criteria can be shown to be necessary for the provision of the . . . services . . . ." 42 U.S.C. § 12182(2)(a)(i) (1994) (emphasis added). But the Equal Employment Opportunity Commission has vacillated on the issue. Compare EQUAL EMPLOYMENT OPPORTUNITY COMM'N, INTERIM GUIDANCE ON DISABILITY-BASED DISTINCTIONS IN HEALTH CARE PLANS (June 6, 1993), reprinted in 2 Accommodating Disabilities (CCH) ¶¶ 140022 n.1, 140024 n.7 (assuming that the disparate impact theory is unavailable under the ADA or Section 504) with Facility Health Management, Health Law Focus (CCH) 2, at 2-3 (Dec. 21, 1993) (reporting that the EEOC's director of ADA policy had indicated that the agency might change its position). The application of the antidiscrimination laws to facially neutral conduct is a fascinating and complex topic that justifies separate and extended discussion. For purposes of this Article, I have assumed that quality-of-life judgments based on a patient's disability constitute facially discriminatory conduct. As a result, the analysis explored in the text of this Article applies to instances of disparate treatment but not necessarily to cases involving disparate impact. It would only apply to disparate impact cases if courts choose to apply the same test to these cases that they apply to disparate treatment cases. While the ADA text quoted above suggests that the same test may apply to disparate treatment and disparate impact cases which arise under the ADA, the Supreme Court has enunciated a distinct "meaningful access" test which applies to disparate impact cases which arise under Section 504. Alexander, 469 U.S. at 292-302. It has neither explored the full implications of this test nor determined whether this test applies in cases arising under the ADA. For an insightful analysis of meaningful access test as applied in the context of health care rationing, see David Orentlicher, Destructuring Disability: Rationing of Health Care and Unfair Discrimination Against the Sick, 31 HARV. C.R.-C.L. L. REV. 49, 79-86 (1996).
68. Treatment decisions that do not expressly take disability into account, but which have a disproportionate impact on disabled persons (such as a limit on the length of insured hospital stays) are also prohibited under some circumstances by the antidiscrimination laws. However, the legal test governing these cases may be different under Section 504 than under the ADA. The Supreme Court has assumed, without deciding, that Section 504 applies not only to facially disparate treatment but also to facially neutral conduct that has a disproportionate impact on disabled patients (such as a limit on insured hospital stays). Alexander v. Choate, 469 U.S. 287, 292-302 (1985); 28 C.F.R. § 35.130 (1995). The ADA appears to govern both kinds of discrimination explicitly. For example, Title III of the ADA prohibits the imposition of "eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities . . ., unless such criteria can be shown to be necessary for the provision of the . . . services . . . ." 42 U.S.C. § 12182(2)(a)(i) (1994) (emphasis added). But the Equal Employment Opportunity Commission has vacillated on the issue. Compare EQUAL EMPLOYMENT OPPORTUNITY COMM'N, INTERIM GUIDANCE ON DISABILITY-BASED DISTINCTIONS IN HEALTH CARE PLANS (June 6, 1993), reprinted in 2 Accommodating Disabilities (CCH) ¶¶ 140022 n.1, 140024 n.7 (assuming that the disparate impact theory is unavailable under the ADA or Section 504) with Facility Health Management, Health Law Focus (CCH) 2, at 2-3 (Dec. 21, 1993) (reporting that the EEOC's director of ADA policy had indicated that the agency might change its position). The application of the antidiscrimination laws to facially neutral conduct is a fascinating and complex topic that justifies separate and extended discussion. For purposes of this Article, I have assumed that quality-of-life judgments based on a patient's disability constitute facially discriminatory conduct. As a result, the analysis explored in the text of this Article applies to instances of disparate treatment but not necessarily to cases involving disparate impact. It would only apply to disparate impact cases if courts choose to apply the same test to these cases that they apply to disparate treatment cases. While the ADA text quoted above suggests that the same test may apply to disparate treatment and disparate impact cases which arise under the ADA, the Supreme Court has enunciated a distinct "meaningful access" test which applies to disparate impact cases which arise under Section 504. Alexander, 469 U.S. at 292-302. It has neither explored the full implications of this test nor determined whether this test applies in cases arising under the ADA. For an insightful analysis of meaningful access test as applied in the context of health care rationing, see David Orentlicher, Destructuring Disability: Rationing of Health Care and Unfair Discrimination Against the Sick, 31 HARV. C.R.-C.L. L. REV. 49, 79-86 (1996).
69. Although Section 504 and each title of the ADA prohibit discrimination based on disability, the operative language varies. See 42 U.S.C. § 12132 (1994) (barring discrimination in public services "by reason of disability); id. § 12182(a) (barring discrimination in public accommodation "on the basis of disability"); id. § 12112(a) (barring discrimination in employment "because of the disability"); 29 U.S.C. § 794(a) (1994) (barring discrimination "by reason of" disability).
70. Section 504 prohibits discrimination against "otherwise qualified" persons. 29 U.S.C. § 794(a).
71. 42 U.S.C. § 12132 (protecting "qualified" persons with disabilities).
72. Although Section 504 itself does not state when a person is "otherwise qualified" to receive services, the HHS regulations implementing the Rehabilitation Act define the term to mean "a handicapped person who meets the essential eligibility requirements for the receipt of such services . . . ." 45 C.F.R. § 84.3(k)(4) (1995) (applying Section 504 to services other than employment or education). Under Title II of the ADA, which regulates government services, a person who is "qualified" to receive public services is someone who "meets the essential eligibility requirements" for receipt of the services "with or without reasonable modifications to rules, policies, or practices." 42 U.S.C. § 12131(2) (1994). The Justice Department regulations implementing Title II define essential eligibility requirements to be those "necessary for the provision of the service." 28 C.F.R. § 35.130(b)(8) (1995). In Southeastern Community College v. Davis, 442 U.S. 397 (1979), the Supreme Court held that an applicant's disability need not be ignored when deciding whether the applicant meets the eligibility requirements for the service.
73. See In re Baby K, 832 F. Supp. 1022, 1028 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994) (stating that the ADA, in contrast to the Rehabilitation Act, "does not require that a handicapped individual be 'otherwise qualified'").
74. 42 U.S.C. § 12131(2); 28 C.F.R. § 36.301(a) (1994).
75. See, e.g., Davis, 442 U.S. at 405; United States v. University Hosp., 729 F.2d 144, 156 (2d Cir. 1984) (holding that consideration of disability is only improper when it "is unrelated to, and thus improper to consideration of, the services in question").
76. See also U.S. COMM'N ON CIVIL RIGHTS, ACCOMMODATING THE SPECTRUM OF INDIVIDUAL ABILITIES 144 (1983) ("The goal is neither to exaggerate and stereotype nor to ignore handicapped people's functional limitations.").
77. See Davis, 442 U.S. 397; Doe v. New York Univ., 666 F.2d 761, 776 (2d Cir. 1981); U.S. COMM'N ON CIVIL RIGHTS, supra note 58, at 143; see also NATIONAL COUNCIL ON THE HANDICAPPED, TOWARD INDEPENDENCE app. A-37, A-38 (1986). The basic structure of the law governing disability rights is more like the treatment of gender, national origin, and religion. With respect to those classifications, employers are permitted to make a showing that discriminatory criteria are in fact bona fide occupational qualifications necessary to the business. NATIONAL COUNCIL ON THE HANDICAPPED, supra at app. A-37, A-38. When the civil rights laws were extended to disabled persons, it was widely recognized that the presumption of irrelevancy would also be inappropriate here. See Davis, 442 U.S. at 405; U.S. COMM'N ON CIVIL RIGHTS, supra at 143-44; NATIONAL COUNCIL ON THE HANDICAPPED, supra at app. A-37, A-38.
78. Section 504 itself has no such requirement, but the HHS regulations implementing it expressly require reasonable accommodations by employers and educators. See 45 C.F.R. § 84.12(a) (1995) (regulating employment); id. § 84.44 (1995) (regulating accommodation in education). See also Davis, 442 U.S. at 407-13 (interpreting the education regulations). The ADA imposes a reasonable accommodation requirement as well. See 42 U.S.C. § 12182(b)(2)(A)(ii) (1994) (imposing a duty upon private entities providing public accommodations to make "reasonable modifications" to policies, practices, and procedures); 28 C.F.R. § 36.302(a) (1995) (requiring public accommodations to make "reasonable modifications in policies, practices or procedures").
79. See Wendy E. Parmet, Discrimination and Disability: The Challenges of the ADA, 18 LAW MED. & HEALTH CARE 331, 336 (1990) (describing the ADA as an entitlement program placed on the private sector); Peter M. Shane, Structure, Relationship, Ideology, or, How Would We Know a "New Public Law" If We Saw It?, 89 MICH. L. REV. 837, 862 (1991) (describing the ADA as "social welfare legislation," and not simply an "antidiscrimination" law).
80. See Wendy E. Parmet, Discrimination and Disability: The Challenges of the ADA, 18 LAW MED. & HEALTH CARE 331, 336 (1990) (describing the ADA as an entitlement program placed on the private sector); Peter M. Shane, Structure, Relationship, Ideology, or, How Would We Know a "New Public Law" If We Saw It?, 89 MICH. L. REV. 837, 862 (1991) (describing the ADA as "social welfare legislation," and not simply an "antidiscrimination" law).
81. See 29 U.S.C. § 794(a) (1994); 42 U.S.C. § 12182(b)(2)(A)(iii) (stating that public accommodations must make "reasonable modifications in policies, practice or procedures . . . unless the entity can demonstrate that making such modifications would fundamentally alter the nature of the . . . service"); Davis, 442 U.S. at 410; see also 28 C.F.R. § 35.130(b)(7) (1994) (excluding from the reasonable accommodation requirement for public services any changes that would "fundamentally alter the nature of the service").
82. Whether a disabled applicant is "qualified" and whether that applicant has been discriminated against "on the basis of a disability are two superficially distinct requirements that typically collapse into a single inquiry. As the U.S. Supreme Court observed in Alexander v. Choate, "the question of who is 'otherwise qualified' and what constitutes improper 'discrimination' . . . [are] two sides of a single coin." 469 U.S. 287, 299 n.19 (1985) (discussing the Court's interpretation of Section 504 in Davis, 442 U.S. 397); see also NATIONAL COUNCIL ON THE HANDICAPPED, supra note 59, at app. A-19, A-20 (the organization that initially proposed the Americans with Disabilities Act suggesting that the two requirements are redundant and unnecessarily confusing). A disabled person who lacks legitimate qualifications has not been impermissibly discriminated against. A disabled person who has them may not be treated unfavorably.
83. 1 ALAN MEISEL, THE RIGHT TO DIE 416-20 (1995); 2 id. at 337-39, 535-37.
84. See Bowen v. American Hosp. Ass'n, 476 U.S. 610, 617 (1986). See also Crossley, supra note 36, at 1639-48; C. Everett Koop, Life and Death and the Handicapped Newborn, 5 ISSUES L. & MED. 101, 109-13 (1989). For a history of infant treatment cases including cases not addressing the antidiscrimination laws, see 2 MEISEL, supra note 64, at 306-14.
85. The history is recounted in Bowen, 476 U.S. at 617-26; see also MEISEL, supra note 64.
86. 476 U.S. 610 (1986).
87. Child Abuse Prevention and Treatment Act, 42 U.S.C. §§ 5101-5107 (1994); 45 C.F.R. § 1340 (1995). These amendments were reportedly a compromise between those favoring and those opposing quality-of-life considerations. Capron, supra note 3, at 21.
88. See supra note 44.
89. 42 U.S.C. §§ 12112, 12131, 12181(7), 12182 (1994); 25 C.F.R. § 36.104 (1995) (defining public accommodations to include the "professional office of a health care provider, hospital, or other similar service establishment"); H.R. REP. No. 101-485, pt. 4, at 55-56 (1990), reprinted in 1990 U.S.C.C.A.N. 512, 544-45. The entity must also "affect commerce." 42 U.S.C § 12181(7).
90. 729 F.2d 144 (2d Cir. 1984).
91. Id. at 156 (emphasis added).
92. Id. The court was interpreting Southeastern Community College v. Davis, 442 U.S. 397 (1979) and a previous Second Circuit case interpreting Davis, Doe v. New York University, 666 F.2d 761 (2d Cir. 1981).
93. See Bowen v. American Hosp. Ass'n, 476 U.S. 610, 655 (1986) (White, J., dissenting).
94. See also Johnson by Johnson v. Thompson, 971 F.2d 1487, 1493 (10th Cir. 1992) ("[I]f such a person were not so handicapped, he or she would not need the medical treatment and thus would not 'otherwise qualify' for the treatment."), cert. denied, 113 S. Ct. 1255 (1993).
95. 729 F.2d at 157.
96. Id.
97. Id. at 156 ("[I]t is typically the handicap itself that gives rise to, or at least contributes to, the need for services.").
98. Id.
99. The Supreme Court has not yet ruled definitively on this issue. The plurality opinion in Bowen held only that a "hospital rule or state policy . . . would be subject to challenge under § 504." 476 U.S. at 624 (emphasis added). However, the better view today is that the antidiscrimination laws apply to at least some individual treatment decisions. See Crossley, supra note 36, at 1617, 1639-48. And the clear trend in the lower courts is in this direction. In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir. 1994), cert. denied, 115 S. Ct. 91 (1994); Miller v. Spicer, 822 F. Supp. 158, 163-66 (D. Del. 1993) (patient denied tendon repair due to HIV status); Glanz v. Vernick, 750 F. Supp. 39, 46 (D. Mass. 1990) (patient denied ear surgery due to HIV status); see also Johnson by Johnson v. Thompson, 971 F.2d 1487, 1494 n.3 (10th Cir. 1992) (dictum), cert. denied, 113 S. Ct. 1255 (1993); Gerben v. Holsclaw, 692 F. Supp. 557, 562 (E.D. Pa. 1988); State v. Clausen, 491 N.W.2d 662, 665-68 (Minn. Ct. App. 1992) (applying Minnesota law to denial of tendon repair due to HIV status); cf. American Academy of Pediatrics v. Heckler, 561 F. Supp. 395, 402 (D.D.C. 1983) ("[I]t cannot be said that [S]ection 504 does not authorize some regulation of the provision of some types of medical care to handicapped newborns."). While a more lengthy defense of this conclusion is possible, I have refrained from making it here because the argument for complete immunity, especially under the ADA, has little current support.
100. Bowen, 476 U.S. at 655 (White, J., dissenting). For purposes of this point he assumed, but did not concede, that the reasoning of University Hospital was correct. Justice White hinted that the antidiscrimination laws should also cover denial of treatment for related conditions. Id. at 655 n.8 ("It could be argued, for example, that the [relevant] benefit provided by hospitals . . . is 'general medical care for whatever happens to need treating.' If this is the benefit, then a much broader application of the statute in this context is reasonable.").
101. 476 U.S. 610.
102. Id. at 655.
103. The Court noted the distinction made by Justice White between related and unrelated conditions, but saw no need to rule on the distinction based on the facts of the case at bar. Id. at 634 n.20.
104. Id. at 630; see also Johnson by Johnson, 971 F.2d at 1492 (stating that actions by the providers which "rendered parental consent a sham" would be subject to challenge).
105. The better view now is that the federal disability rights laws do apply to individual medical treatment decisions. See supra note 80.
106. Johnson by Johnson, 971 F.2d at 1493-94 & n.3.
107. Id. at 1494. Thus, it limited the reach of Section 504 to "discrimination between the non-handicapped and the 'otherwise qualified' handicapped."
108. Id. at 1494 n.3 ("[I]t would seem that the 'otherwise qualified' condition might be satisfied under such a scenario."); accord Gerben v. Holsclaw, 692 F. Supp. 557, 561-62 (E.D. Pa. 1988) (dictum).
109. See State v. Clausen, 491 N.W.2d 662, 665-68 (Minn. Ct. App. 1982) (applying state law).
110. See Glanz v. Vernick, 750 F. Supp. 39 (D. Mass. 1990).
111. See Miller v. Spicer, 822 F. Supp. 158 (D. Del. 1993).
112. See David C. Hadorn, The Problem of Discrimination in Health Care Priority Setting, 268 JAMA 1454, 1457-58 (1992) (noting poorer outcomes associated with disabilities like severe diabetes and cancer).
113. 832 F. Supp. 1022 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994).
114. According to the court, "[a]nencephaly is a congenital defect in which the brain stem is present but the cerebral cortex is rudimentary or absent. There is no treatment that will cure, correct, or ameliorate anencephaly." Id. at 1025. The court described her condition as follows: "Baby K is permanently unconscious and cannot hear or see. Lacking a cerebral function, Baby K does not feel pain. Baby K has brain stem functions primarily limited to reflexive actions such as feeding reflexes (rooting, sucking, swallowing); respiratory reflexes (breathing, coughing) and reflexive responses to sound or touch." Id. The court concluded that anencephaly is a disability "because it affects the baby's neurological functioning, ability to walk, and ability to see or talk." Id. at 1028. The hospital conceded that its desire to withhold ventilation support was based on Baby K's anencephaly. Id. at 1027.
115. Id. at 1025-27 Ms. K had previously rejected the suggestion of her obstetrician and neonatologist that she terminate her pregnancy with Baby K. Id. at 1025. Within days of the baby's birth, her physician unsuccessfully urged a "Do Not Resuscitate order." Id. 97 Id. at 1026. God, she felt, not humans, should decide the moment of Baby K's death.
116. Both the noncustodial father and the court-appointed guardian ad litem agreed with the hospital's position. Id. at 1026.
117. Id. at 1029.
118. Id. at 1028. The court rejected the distinction because, it concluded, the distinction would be impermissible in the context of racial discrimination. However, it did not address the concerns raised in University Hospital about the justiciability of these cases under the antidiscrimination laws.
119. Id. at 1027-29.
120. In re Baby K, 16 F.3d 590 (4th Or.), cert. denied, 115 S. Ct. 91 (1994) (affirming the trial court ruling on the basis of the Emergency Medical Treatment and Active Labor Act).
121. OREGON HEALTH SERV. COMM'N, PRIORITIZATION OF HEALTH SERVICES: A REPORT TO THE GOVERNOR AND LEGISLATURE (1991).
122. Letter from Louis W. Sullivan, M.D., to Barbara Roberts, Governor of Oregon (Aug. 3, 1992), in 9 ISSUES L. & MED. 397, 409 (1994) [hereinafter Sullivan Letter].
123. Id.
124. OREGON HEALTH SERV. COMM'N, supra note 103, at 9. For a longer summary of the negotiations between Oregon and the federal government, see Philip G. Peters, Jr., Health Care Rationing and Disability Rights, 70 IND. L.J. 491, 503-05 (1995). On March 19, 1993, the government granted conditional approval to Oregon based on changes that Oregon had agreed to make and on the condition of further changes outlined in the government's response.
125. Robert M. Wachter et al., Decisions About Resuscitation: Inequities Among Patients with Different Diseases, but Similar Prognoses, 111 ANNALS INTERNAL MED. 525, 525 (1989) (noting that physicians wrote DNR orders more readily for AIDS and lung cancer patients than for cirrhosis and heart failure patients with similar prognoses); see also Betty W. Levin et al., Treatment Choice for Infants in the Neonatal Intensive Care Unit at Risk for AIDS, 265 JAMA 2976, 2976-80 (1991) (survey indicating that health professions at six New York hospitals would be less aggressive treating the life-threatening conditions of newborns infected with HIV than if the infant did not have HIV, or had other disabilities such as cystic fibrosis).
126. Robert M. Wachter et al., Decisions About Resuscitation: Inequities Among Patients with Different Diseases, but Similar Prognoses, 111 ANNALS INTERNAL MED. 525, 525 (1989) (noting that physicians wrote DNR orders more readily for AIDS and lung cancer patients than for cirrhosis and heart failure patients with similar prognoses); see also Betty W. Levin et al., Treatment Choice for Infants in the Neonatal Intensive Care Unit at Risk for AIDS, 265 JAMA 2976, 2976-80 (1991) (survey indicating that health professions at six New York hospitals would be less aggressive treating the life-threatening conditions of newborns infected with HIV than if the infant did not have HIV, or had other disabilities such as cystic fibrosis).
127. Giles R. Scofield, Medical Futility Judgments: Discriminating or Discriminatory?, 25 SETON HALL L. REV. 927, 934 (1995) (citing Kenneth A. Gerhart et al., Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers, 23 ANNALS EMERGENCY MED. 807, 808 (1994); Lindsay Gething, Judgments by Health Professionals of Personal Characteristics of People with a Visible Physical Disability, 34 SOC. SCI. & MED. 809, 809 (1992); M.L. Paris, Attitudes of Medical Students and Health-Care Professionals Towards People with Disabilities, 74 ARCHIVES PHYSICAL MED. & REHABILITATION 818, 818 (1993)).
128. Giles R. Scofield, Medical Futility Judgments: Discriminating or Discriminatory?, 25 SETON HALL L. REV. 927, 934 (1995) (citing Kenneth A. Gerhart et al., Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers, 23 ANNALS EMERGENCY MED. 807, 808 (1994); Lindsay Gething, Judgments by Health Professionals of Personal Characteristics of People with a Visible Physical Disability, 34 SOC. SCI. & MED. 809, 809 (1992); M.L. Paris, Attitudes of Medical Students and Health-Care Professionals Towards People with Disabilities, 74 ARCHIVES PHYSICAL MED. & REHABILITATION 818, 818 (1993)).
129. Giles R. Scofield, Medical Futility Judgments: Discriminating or Discriminatory?, 25 SETON HALL L. REV. 927, 934 (1995) (citing Kenneth A. Gerhart et al., Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers, 23 ANNALS EMERGENCY MED. 807, 808 (1994); Lindsay Gething, Judgments by Health Professionals of Personal Characteristics of People with a Visible Physical Disability, 34 SOC. SCI. & MED. 809, 809 (1992); M.L. Paris, Attitudes of Medical Students and Health-Care Professionals Towards People with Disabilities, 74 ARCHIVES PHYSICAL MED. & REHABILITATION 818, 818 (1993)).
130. Giles R. Scofield, Medical Futility Judgments: Discriminating or Discriminatory?, 25 SETON HALL L. REV. 927, 934 (1995) (citing Kenneth A. Gerhart et al., Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers, 23 ANNALS EMERGENCY MED. 807, 808 (1994); Lindsay Gething, Judgments by Health Professionals of Personal Characteristics of People with a Visible Physical Disability, 34 SOC. SCI. & MED. 809, 809 (1992); M.L. Paris, Attitudes of Medical Students and Health-Care Professionals Towards People with Disabilities, 74 ARCHIVES PHYSICAL MED. & REHABILITATION 818, 818 (1993)).
131. University Hosp. 729 F.2d 144, 155-56 2d Cir. 1984). Indeed, the court seemed to think that the very idea of "qualifications" could not be applied in the context of medical services.
132. Id.
133. Several other scholars have also rejected the distinction. See Crossley, supra note 36, at 1648-50; Orentlicher, supra note 50, at 61; Scofield, supra note 108, at 927.
134. 442 U.S. 397 (1979).
135. Doe v. New York Univ., 666 F.2d 761, 775 (2d Cir. 1981).
136. See supra note 107.
137. FED. R. EVID. 105 (requiring the trial judge to instruct the jury when evidence is admitted for one purpose but not others).
138. Parts IV and V consider when differential treatment might be justified.
139. In this respect, the government's suggestion in University Hospital that medical decisions must be "bona fide" was sound. 729 F.2d 144, 150 (2d Cir. 1984).
140. In the absence of resource constraints (considered in Part V), a patient should be able to establish his "qualifications" for treatment by proving his capacity to benefit from treatment. See infra note 174 (collecting authorities).
141. The courts have split on whether the antidiscrimination laws prohibit discrimination between disabilities. One line of cases suggests that the antidiscrimination laws are concerned only with "even-handed" treatment of the disabled vis-à-vis the non-disabled and not with discrimination among the disabled. See, e.g., Tumage v. Turner, 485 U.S. 535, 549 (1988) ("There is nothing in [Section 504] that requires that any benefit extended to one category of handicapped persons also be extended to all other categories of handicapped persons."); Doe v. Colautti, 592 F.2d 704, 708-10 (3d Cir. 1979); Duquette v. Dupuis, 582 F. Supp. 1365, 1370-72 (D.N.H. 1984); Doe v. Devine, 545 F. Supp. 576, 585 (D.D.C. 1982) (noting that equal benefits are not required, but in fact were provided), aff'd, 703 F.2d 1319 (D.C. Cir. 1983). Another line of cases suggests a contrary result. See Henderson v. Bodine Aluminum, Inc., 70 F.3d 958 (8th Cir. 1995) (finding that a health plan that insured high dose chemotherapy for some cancers but not breast cancer violated the ADA); McGuire v. Switzer, 734 F. Supp. 99, 114-15 (S.D.N.Y. 1990) (holding that the plaintiff had established a cause of action under Section 504 based on the state's higher tuition and maintenance reimbursement to blind individuals as compared to reimbursement to other disabled individuals). The issue is arguably further muddied by provisions in the regulations implementing both Section 504 and the ADA that expressly permit government programs to target, and thus favor, specific disabilities. 45 C.F.R. § 84.4(c) (1990) ("The exclusion of nonhandicapped persons from the benefits of a program limited by Federal statute or executive order to handicapped persons or the exclusions of a specific class of handicapped persons from a program limited by Federal statute or executive order to a different class of handicapped persons is not prohibited by this part."); 28 C.F.R. § 35.130(c) (1991) ("Nothing in this part prohibits a public entity from providing benefits . . . to individuals with disabilities, or to a particular class of individuals with disabilities beyond those required by this part."). In theory at least, this exception may also imply tolerance of private discrimination between disabilities. As noted above, some federal courts have given such latitude to health benefits plans. But nothing in the language of this narrowly targeted exception suggests that prejudicial discrimination against disfavored disabilities should be tolerated. To the contrary, the presence of this provision suggests a congressional assumption that differential treatment on the basis of disability would ordinarily violate the general prohibition on disability-based discrimination. Indeed, courts, litigants, and the Equal Employment Opportunity Commission have made this assumption in disputes over discriminatory limits on AIDS coverage by health benefits plans. See EQUAL EMPLOYMENT OPPORTUNITY COMM'N, supra note 50; EEOC v. Tarrant Distrib., No. H-94-3001 (S.D. Tex. Oct. 11, 1994), abstracted in CCH Accommodating Disabilities, No. 36, at 5 (Nov. 1994) (detailing a case in which an employer agreed to lift its $10,000 lifetime cap on AIDS coverage); Mason Tenders Dist. Council Welfare Fund v. Donaghey, No. 93 Civ. 1154 (S.D.N.Y. Nov. 19, 1993) (trial court ruling permitting a cause of action alleging discriminatory failure to provide insurance coverage for HIV-related illness), abstracted in 91 HEALTH L. FOCUS, CCH, at 2 (Dec. 21, 1993); Laborers Dist. Council Bldg. & Constr. Health & Welfare Fund, EEOC, Charge No. 170930899 (Sept. 9, 1993), abstracted in 62 L.W. 2232 (Oct. 19, 1993) (finding that a lower cap for HIV-related illness violated the ADA); Estate of Kadinger v. International Bhd. of Elec. Workers Local 110, No. CIV 3-93-159 (D.C. Minn. Dec. 21, 1993) (consent decree removing discriminatory lifetime cap on health insurance benefits for AIDS), abstracted in 62 L.W. 2436 (Jan. 18, 1994). Ultimately, a line will have to be drawn between permitted "favorable" treatment and regulated "unfavorable" treatment. Thus far, neither the courts nor the regulators have attempted this task. For a thoughtful survey of the issue and citations to additional cases, see Crossley, supra note 8, at 227-31.
142. Parts IV and V consider the circumstances in which qualify-of-life criteria may be employed.
143. See infra Parts IV and V.
144. 750 F. Supp. 39, 46 (D. Mass. 1990); see also State v. Clausen, 491 N.W.2d 662, 665-68 (Minn. Ct. App. 1992) (rejecting on the merits a dentist's claim that his referral of an HIV infected patient to a university center was intended to provide the patient with better protection from bacterial infection).
145. Crossley, supra note 36, at 1649-50. She also criticizes the distinction on the grounds that it will sometimes be overbroad, prohibiting dissimilar treatment for unrelated conditions even when it is defensible. Id. at 1650. While this is a reasonable reading of University Hospital, see supra text accompanying note 77, the question of which treatment decisions to supervise can be separated from the question of which dissimilar treatment to proscribe. In that event, endorsement of the distinction between related and unrelated conditions would not commit a court to ignoring possible justifications for nontreatment in cases involving unrelated conditions. Parts IV and V explore the circumstances in which dissimilar treatment may be defensible.
146. Id. In my view, the intuitive answer is "yes" because the need arises out of the disability. See University Hosp., 729 F.2d at 156. But that would leave providers free to exclude these children from immunization. Judicial unwillingness to live with this outcome would push them to a different conclusion.
147. Bowen v. American Hosp. Ass'n, 476 U.S. 610, 655 (1986) (White, J. dissenting).
148. Orentlicher, supra note 50, at 61.
149. See supra note 35.
150. See supra note 36.
151. 729 F.2d at 150, 156.
152. In fact, the majority and dissenting opinions engaged in this very debate in connection with a requirement of the Emergency Medical Treatment and Active Labor Act. 16 F.3d 590, 596 (4th Cir.) (concluding that breathing difficulty was the emergency medical problem at stake), cert. denied, 115 S. Ct. 91 (1994); id. at 599 (Sprouse, J., dissenting) (concluding that anencephaly was the relevant condition).
153. Orentlicher, supra note 50, at 61.
154. For example, the courts could treat multiple disability cases, like those in University Hospital and Baby K, as justiciable because treatment decisions in these cases can be readily compared to treatment decisions for patients who lack the allegedly disfavored disability.
155. BARRY FURROW ET AL., HEALTH LAW 556 (1995) [hereinafter FURROW, HEALTH LAW]; see also Orentlicher, supra note 50, at 59 (suggesting that University Hospital "may reflect the court's view that medical decisions are objective and scientific"). The American Academy of Pediatrics made the point this way, in its brief to the Supreme Court in Bowen: The pediatrician must assess, often without reliable medical data, the likelihood of successful treatment, the risk of damage to the infant from the therapy, the effect on the child of protracted artificial life-support care, and the pain and suffering of continued treatment Treatment may be life-saving, but the result of the therapy could cause other damage. Amicus Brief at 7-9, quoted in BARRY R. FURROW ET AL., BIOETHICS, HEALTH CARE LAW AND ETHICS 337 (1991) [hereinafter FURROW, BIOETHICS].
156. See Orentlicher, supra note 35, at 311 (claiming that deference to medical judgments risks "condoning practices that are based on stereotypes or misleading data rather than real medical differences").
157. See American Academy of Pediatrics v. Heckler, 561 F. Supp. 395, 402 (D.D.C. 1983) (suggesting that this tradition applies to medical treatment cases).
158. See supra text accompanying notes 34-36.
159. See supra text accompanying notes 112-13.
160. See supra text accompanying notes 34-36.
161. See supra text accompanying notes 37-40.
162. Quantitative factors are therefore more universally recognized to be relevant. See FURROW, HEALTH CARE LAW, supra note 133, at 94 (arguing that it is proper to base treatment decisions on medical effectiveness); Crossley, supra note 36, at 1646 (claiming "medical effects" of a disability should be a proper consideration); see also infra text accompanying notes 231-34 (noting greater scholarly acceptance of quantitative criteria, at least at the extremes).
163. For example, a physician presumably cannot rely on unfounded assumptions about poorer outcomes for disabled patients. In addition, physicians arguably have no business making futility decisions when the patient or the family is available to make the treatment decision. See infra text accompanying notes 158-64 (discussing the standing issue in connection with quality-of-life judgments) and supra notes 17-20 (pointing out that the desirability of a small chance for additional life is a value judgment arguably best made by the patient or the patient's family). In addition, the reasonable accommodation requirement may limit exclusions based on quantitative factors, such as the odds of success, to the most bleak cases. See Orentlicher, supra note 50, at 72. The disability rights issues raised by quantitative factors become even more complex when a physician bases his refusal to treat on the obligation to steward scarce health care resources, rather than on patient welfare. See infra note 238.
164. Quality-of-life judgments do not raise the same issue when the disputed treatment is quality-enhancing rather than life-extending. When the treatment is quality-enhancing only, such as surgery for hip discomfort, the impact of the treatment on patient quality of life can be assessed without placing a value on preservation of the patient's life. As a result, quality-of-life considerations do not threaten the principle of equal worth when the condition being treated is not life-threatening. To that extent, they are much less controversial. On the right set of facts, however, quality-of-life assessments could raise disability rights issues even in connection with noncritical care. Under a rationing system based on relative effectiveness or cost-effectiveness, for example, treatment of the disabled patients could conceivably receive a lower priority for funding than treatment of non-disabled patients if, because of co-morbidities, disabled patients showed less improvement from the therapy than non-disabled patients. For an examination of these issues, see Peters, supra note 106, at 543-46.
165. See, e.g., Amicus Brief of the Association for Retarded Citizens at 6-9, Bowen v. American Hosp. Ass'n, 476 U.S. 610 (1986), quoted in FURROW BIOETHICS, supra note 133, at 335-36; Robert A. Destro, Quality-of-Life Ethics and Constitutional Jurisprudence: The Demise of Natural Rights and Equal Protection for the Disabled and Incompetent, 2 J. CONTEMP. HEALTH L. & POL'Y 71, 96-99, 118 (1986).
166. Bopp & Coleson, supra note 29, at 836-37, 843-44 (stating that quality-of-life considerations violate the disability rights laws); Bopp & Avila, supra note 39 (same).
167. Amicus Brief of the Association for Retarded Citizens, supra note 143.
168. See, e.g., Richard A. McCormick, The Quality of Life, The Sanctity of Life, HASTINGS CENTER REP., Feb. 1978, at 30, 35.
169. See, e.g., Crossley, supra note 8, at n.79; Martha A. Field, Killing "The Handicapped" -Before and After Birth, 16 HARV. WOMEN'S L.J. 79 (1993); John A. Robertson, Involuntary Euthanasia of Defective Newborns: A Legal Analysis, 27 STAN. L. REV. 213, 253-55 (1975) (questioning quality-of-life arguments). While Field concedes that some babies may be better served by withholding care, she suggests that there are too few such cases to take the risk of permitting best interests decisions, even by families. Field, supra, at n.53.
170. See, e.g., Crossley, supra note 8, at n.79; Martha A. Field, Killing "The Handicapped" - Before and After Birth, 16 HARV. WOMEN'S L.J. 79 (1993); John A. Robertson, Involuntary Euthanasia of Defective Newborns: A Legal Analysis, 27 STAN. L. REV. 213, 253-55 (1975) (questioning quality-of-life arguments). While Field concedes that some babies may be better served by withholding care, she suggests that there are too few such cases to take the risk of permitting best interests decisions, even by families. Field, supra, at n.53.
171. Rationing decisions could easily be disguised as decisions based on patient welfare. When physicians in Britain were forced to restrict access to health care because of rationing policies dictated by their national health plan, they reportedly rationalized them as in the best interests of the patient. Levinsky, The Doctor's Master, 311 NEW ENG. J. MED. 1573 (1984), reprinted in WILLIAM J. CURRAN ET AL., HEALTH CARE LAW, FORENSIC SCIENCE, AND PUBLIC POLICY 796- 97 (4th ed. 1990).
172. Rationing decisions could easily be disguised as decisions based on patient welfare. When physicians in Britain were forced to restrict access to health care because of rationing policies dictated by their national health plan, they reportedly rationalized them as in the best interests of the patient. Levinsky, The Doctor's Master, 311 NEW ENG. J. MED. 1573 (1984), reprinted in WILLIAM J. CURRAN ET AL., HEALTH CARE LAW, FORENSIC SCIENCE, AND PUBLIC POLICY 796-97 (4th ed. 1990).
173. See supra text accompanying notes 57-62 (discussing reasonable accommodation requirement).
174. 832 F. Supp. 1022, 1027 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994). Although other cases have considered the relevance of a patient's disability to treatment decisions about noncritical care, none has addressed the question in the context of life-extending care.
175. Id. at 1028, 1029. The Fourth Circuit did not review the trial court's conclusions when it affirmed the decision on other grounds. See In re Baby K, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994) (affirming the trial court ruling on the basis of the Emergency Medical Treatment and Active Labor Act).
176. 729 F.2d 144, 156 (2d Cir. 1984).
177. For a brief summary of the disability rights issues raised by the Oregon plan, see Peters, supra note 106, at 502-05.
178. Sullivan Letter, supra note 104, at 409. Oregon denied that it had violated the ADA, but nonetheless made the changes requested by the federal government. OREGON HEALTH SERVS. COMM'N, PRIORITIZATION OF HEALTH SERVICES: A REPORT TO THE GOVERNOR AND LEGISLATURE 9 (1993); Peters, supra note 106, at 504 (describing the negotiations).
179. Michael J. Astrue, Pseudoscience and the Law: The Case of the Oregon Medicaid Rationing Experiment, 9 ISSUES L. & MED. 375, 381 (1994).
180. Sullivan Letter, supra note 104, at 410.
181. See supra text accompanying notes 64-68; cf. Bopp & Avila, supra note 39.
182. 433 U.S. 321, 335-36 (1977).
183. Id. at 335 ("In the usual case, the argument that a particular job is too dangerous for women may appropriately be met by the rejoinder that it is the purpose of Title VII to allow the individual woman to make that choice for herself.").
184. Id.
185. 499 U.S. 187 (1991).
186. Id. at 202.
187. physicians would remain free, of course, to differ with patients about nondiscriminatory matters, such as whether the treatment in fact works.
188. 42 U.S.C. § 12182(b)(3) (1994) (emphasis added); accord 28 C.F.R. § 36.208 (1995). The rules governing employment discrimination are more unclear because the statute speaks only of harm to others, but the regulations include harm to the employee. Compare 42 U.S.C. § 12111(3) (1994) with 29 C.F.R. § 1630.2(r) (1995).
189. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 215-19; PRESIDENT'S COMM'N FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND BEHAVIOR RESEARCH, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT: A REPORT ON THE ETHICAL, MEDICAL AND LEGAL ISSUES IN TREATMENT DECISIONS 218-19 (1983); James Drane & John Coulehan, The Best-Interest Standard: Surrogate Decision Making and Quality of Life, 6 J. CLINICAL ETHICS 20, 22-23 (1995); Nancy K. Rhoden, Treatment Dilemmas for Imperiled Newborns: Why Quality of Life Counts, 58 S. CAL. L. REV. 1283 (1985). Even some conservative commentators appear to tolerate consideration of a patient's overall interests in the most compelling cases. See, e.g., PAUL RAMSEY, ETHICS AT THE EDGE OF LIFE 191-93, 212-16 (1978) (discussing Tay-Sachs, Lesch-Nyhan disease, and anencephaly, respectively). For a review and critique of the ethical literature, see Crossley, supra note 36, at 1622-27; Philip G. Peters, Jr., The State's Interest in the Preservation of Life: From Quinlan to Cruzan, 50 OHIO ST. L.J. 891, 946-50 (1989).
190. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 215-19; PRESIDENT'S COMM'N FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND BEHAVIOR RESEARCH, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT: A REPORT ON THE ETHICAL, MEDICAL AND LEGAL ISSUES IN TREATMENT DECISIONS 218-19 (1983); James Drane & John Coulehan, The Best-Interest Standard: Surrogate Decision Making and Quality of Life, 6 J. CLINICAL ETHICS 20, 22-23 (1995); Nancy K. Rhoden, Treatment Dilemmas for Imperiled Newborns: Why Quality of Life Counts, 58 S. CAL. L. REV. 1283 (1985). Even some conservative commentators appear to tolerate consideration of a patient's overall interests in the most compelling cases. See, e.g., PAUL RAMSEY, ETHICS AT THE EDGE OF LIFE 191-93, 212-16 (1978) (discussing Tay-Sachs, Lesch-Nyhan disease, and anencephaly, respectively). For a review and critique of the ethical literature, see Crossley, supra note 36, at 1622-27; Philip G. Peters, Jr., The State's Interest in the Preservation of Life: From Quinlan to Cruzan, 50 OHIO ST. L.J. 891, 946-50 (1989).
191. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 215-19; PRESIDENT'S COMM'N FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND BEHAVIOR RESEARCH, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT: A REPORT ON THE ETHICAL, MEDICAL AND LEGAL ISSUES IN TREATMENT DECISIONS 218-19 (1983); James Drane & John Coulehan, The Best-Interest Standard: Surrogate Decision Making and Quality of Life, 6 J. CLINICAL ETHICS 20, 22-23 (1995); Nancy K. Rhoden, Treatment Dilemmas for Imperiled Newborns: Why Quality of Life Counts, 58 S. CAL. L. REV. 1283 (1985). Even some conservative commentators appear to tolerate consideration of a patient's overall interests in the most compelling cases. See, e.g., PAUL RAMSEY, ETHICS AT THE EDGE OF LIFE 191-93, 212-16 (1978) (discussing Tay-Sachs, Lesch-Nyhan disease, and anencephaly, respectively). For a review and critique of the ethical literature, see Crossley, supra note 36, at 1622-27; Philip G. Peters, Jr., The State's Interest in the Preservation of Life: From Quinlan to Cruzan, 50 OHIO ST. L.J. 891, 946-50 (1989).
192. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 215-19; PRESIDENT'S COMM'N FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND BEHAVIOR RESEARCH, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT: A REPORT ON THE ETHICAL, MEDICAL AND LEGAL ISSUES IN TREATMENT DECISIONS 218-19 (1983); James Drane & John Coulehan, The Best-Interest Standard: Surrogate Decision Making and Quality of Life, 6 J. CLINICAL ETHICS 20, 22-23 (1995); Nancy K. Rhoden, Treatment Dilemmas for Imperiled Newborns: Why Quality of Life Counts, 58 S. CAL. L. REV. 1283 (1985). Even some conservative commentators appear to tolerate consideration of a patient's overall interests in the most compelling cases. See, e.g., PAUL RAMSEY, ETHICS AT THE EDGE OF LIFE 191-93, 212-16 (1978) (discussing Tay-Sachs, Lesch-Nyhan disease, and anencephaly, respectively). For a review and critique of the ethical literature, see Crossley, supra note 36, at 1622-27; Philip G. Peters, Jr., The State's Interest in the Preservation of Life: From Quinlan to Cruzan, 50 OHIO ST. L.J. 891, 946-50 (1989).
193. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 215-19; PRESIDENT'S COMM'N FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND BEHAVIOR RESEARCH, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT: A REPORT ON THE ETHICAL, MEDICAL AND LEGAL ISSUES IN TREATMENT DECISIONS 218-19 (1983); James Drane & John Coulehan, The Best-Interest Standard: Surrogate Decision Making and Quality of Life, 6 J. CLINICAL ETHICS 20, 22-23 (1995); Nancy K. Rhoden, Treatment Dilemmas for Imperiled Newborns: Why Quality of Life Counts, 58 S. CAL. L. REV. 1283 (1985). Even some conservative commentators appear to tolerate consideration of a patient's overall interests in the most compelling cases. See, e.g., PAUL RAMSEY, ETHICS AT THE EDGE OF LIFE 191-93, 212-16 (1978) (discussing Tay-Sachs, Lesch-Nyhan disease, and anencephaly, respectively). For a review and critique of the ethical literature, see Crossley, supra note 36, at 1622-27; Philip G. Peters, Jr., The State's Interest in the Preservation of Life: From Quinlan to Cruzan, 50 OHIO ST. L.J. 891, 946-50 (1989).
194. McCormick, supra note 146, at 35.
195. 1 MEISEL, supra note 64, at 383-88, 416-25. When evidence of patient preferences is inadequate to make a decision on that basis, most (but not all) courts permit the surrogate to base the decision on the patient's best interests. Id. at 402. Some courts reject best-interests decisions in name, but permit them in fact. Id. at 398-99. Only a few states insist that the patient have explicitly stated her preferences. See, e.g., In re Mary O'Connor, 531 N.E.2d 607 (N.Y. 1988).
196. See 1 MEISEL, supra note 64, at 398-99.
197. 497 N.E.2d 626 (Mass. 1986).
198. 529 A.2d 434 (N.J. 1987) (Pollock, J., concurring).
199. In fact, the Missouri durable power of attorney statute, which specifically disavows discrimination on the basis of disability, specifically permits decisions based on the patient's prognosis and the burdens and benefits of treatment. Mo. REV. STAT. §§ 404.870, 404.822 (1994).
200. Bopp & Coleson, supra note 29, at 840 ("In considering the best interests of a child with a severe disability the benefits and burdens of treatment must be weighed, not the quality of life of a patient."); Edward R. Grant, Medical Futility: Legal and Ethical Aspects, 20 LAW MED. & HEALTH CARE 330 (1992). In Grant's view, all life is presumed to be equally compelling, but in some cases the burden of treatment may outweigh the benefit of life. Id. at 333. This distinction was initially suggested two decades ago by the noted ethicist, Paul Ramsey, as a way of limiting the instances in which families ought to be permitted to decline life-extending care. RAMSEY, supra note 165, at 180-81. It reappeared in the Missouri Supreme Court's decision in the case of Nancy Cruzan and in the well-known case of Joseph Saikewicz. Cruzan v. Harmon, 760 S.W.2d 408, 423-24 (Mo. 1988) (en banc), aff'd, 110 S. Ct. 2841 (1990); Superintendent of Belchertown State Sch. v. Saikewicz, 370 N.E.2d 417, 433 (Mass. 1977) (permitting consideration of the patient's retardation only to the extent that it exacerbated the pain and disorientation of chemotherapy). The distinction has rhetorical appeal under the disability rights laws because it segregates treatment decisions based on the burdens of disability (prohibited) from decisions based on the burdens of treatment (permitted). However, as indicated in the text, the distinction lacks a normative foundation. As a result, it has not influenced the main-stream legal and ethical debate about the withholding of life-extending care and should not be adopted as a part of disability rights analysis. Indeed, even Missouri and Massachusetts have begun to retreat from it. See Murphy v. Wheeler, 858 S.W.2d 263 (Mo. Ct. App. 1993) (limiting Cruzan to vegetative patients in need of nutrition and hydration and permitting best interests assessments to be made for other patients); Brophy v. New England Sinai Hosp., 497 N.E.2d 626, 636 (Mass. 1986) (stating that it would ignore quality of life, but then permitting the withdrawal of tube feeding, a procedure that the trial court had determined was not highly invasive or painful, because the patient would have considered it "degrading and without human dignity").
201. See supra text accompanying notes 49-56.
202. Capacity to benefit is presumably a permissible eligibility criterion. See, e.g., Majors v. Housing Auth., 652 F.2d 454, 457-58 (5th Cir. 1981) (holding that a woman with a mental disability who required a dog was capable of enjoying the full benefit of public housing); Camenish v. University of Tex., 616 F.2d 127, 133 (5th Cir. 1980), vacated as moot, 451 U.S. 390 (1981) (finding that a deaf student could perform well, unlike the student in Davis who would not realize the principal benefits of nursing school); Easley by Easley v. Snider, 841 F. Supp. 668, 673 (E.D. Pa. 1993) (requiring a state to show that persons excluded are "incapable of experiencing the benefit" targeted by a state program of attendant care), rev'd, 36 F.3d 297 (3d Cir. 1994); Glanz v. Vernick, 756 F. Supp. 632, 638 (D. Mass. 1991) (ruling that an HIV-infected patient's ability to benefit from ear surgery would determine his qualifications); U.S. COMM'N ON CIVIL RIGHTS, ACCOMMODATING THE SPECTRUM OF INDIVIDUAL ABILITIES 115 (1983) (noting that capability of benefiting is one standard used). See also Douglas J. Besharov & Jessica D. Silver, Rationing Access to Advanced Medical Techniques, 8 J. LEG. MED. 507, 529 (1987) ("A good argument can be made that anyone who can benefit from a heart transplant under purely medical criteria is otherwise qualified."); Philip G. Peters, Jr., Health Care Rationing and Disability Rights, 70 IND. L.J. 491, 523 (1995) (discussing the notion of capacity to benefit and collecting cases); see also Bowen v. American Hosp. Ass'n, 476 U.S. 610, 655 (1986) (White, J., dissenting) (arguing that a patient who "would benefit from" treatment is "thus otherwise qualified").
203. Capacity to benefit is presumably a permissible eligibility criterion. See, e.g., Majors v. Housing Auth., 652 F.2d 454, 457-58 (5th Cir. 1981) (holding that a woman with a mental disability who required a dog was capable of enjoying the full benefit of public housing); Camenish v. University of Tex., 616 F.2d 127, 133 (5th Cir. 1980), vacated as moot, 451 U.S. 390 (1981) (finding that a deaf student could perform well, unlike the student in Davis who would not realize the principal benefits of nursing school); Easley by Easley v. Snider, 841 F. Supp. 668, 673 (E.D. Pa. 1993) (requiring a state to show that persons excluded are "incapable of experiencing the benefit" targeted by a state program of attendant care), rev'd, 36 F.3d 297 (3d Cir. 1994); Glanz v. Vernick, 756 F. Supp. 632, 638 (D. Mass. 1991) (ruling that an HIV-infected patient's ability to benefit from ear surgery would determine his qualifications); U.S. COMM'N ON CIVIL RIGHTS, ACCOMMODATING THE SPECTRUM OF INDIVIDUAL ABILITIES 115 (1983) (noting that capability of benefiting is one standard used). See also Douglas J. Besharov & Jessica D. Silver, Rationing Access to Advanced Medical Techniques, 8 J. LEG. MED. 507, 529 (1987) ("A good argument can be made that anyone who can benefit from a heart transplant under purely medical criteria is otherwise qualified."); Philip G. Peters, Jr., Health Care Rationing and Disability Rights, 70 IND. L.J. 491, 523 (1995) (discussing the notion of capacity to benefit and collecting cases); see also Bowen v. American Hosp. Ass'n, 476 U.S. 610, 655 (1986) (White, J., dissenting) (arguing that a patient who "would benefit from" treatment is "thus otherwise qualified").
204. 832 F. Supp. 1022, 1028-29 (E.D. Va. 1993), aff'd, 16 F.3d 590 (4th Cir.), cert. denied, 115 S. Ct. 91 (1994).
205. See Grant, supra note 172, at 330-31 (noting that the underlying issue remains the same); see also Bopp & Avila, supra note 39 (acknowledging that the issue is not new and suggesting that the ADA changed the legal landscape).
206. See supra note 64.
207. See supra text accompanying notes 65-67.
208. 476 U.S. 610 (1986).
209. These amendments were reportedly a compromise between those favoring and those opposing quality-of-life considerations. Capron, supra note 3, at 21.
210. Child Abuse Prevention and Treatment Act, 42 U.S.C. §§ 5101-07 (1994); 45 C.F.R. § 1340 (1995).
211. See Weir, Pediatric Ethics Committees: Ethical Advisers or Legal Watchdogs?, 15 LAW MED. & HEALTH CARE 99, 103 (1987); see also NORMAN CANTOR, LEGAL FRONTIERS OF DEATH AND DYING 178-79 (1987).
212. See Weir, Pediatric Ethics Committees: Ethical Advisers or Legal Watchdogs?, 15 LAW MED. & HEALTH CARE 99, 103 (1987); see also NORMAN CANTOR, LEGAL FRONTIERS OF DEATH AND DYING 178-79 (1987).
213. S. REP. No. 101-116, at 63 (1989) (Committee on Labor and Human Resources Report accompanying The Americans with Disabilities Act of 1989).
214. See Daar, supra note 8, at 1245; John C. Fletcher, The Baby K Case: Ethical and Legal Considerations of Disputes About Futility, II BIOLAW S:219, S:227 (1994) (recognizing the moral agency of both physician and family); E. Haavi Morreim, Profoundly Diminished Life: The Casualties of Coercion, HASTINGS CENTER REP., Jan.-Feb. 1994, at 33, 37.
215. See Daar, supra note 8, at 1245; John C. Fletcher, The Baby K Case: Ethical and Legal Considerations of Disputes About Futility, II BIOLAW S:219, S:227 (1994) (recognizing the moral agency of both physician and family); E. Haavi Morreim, Profoundly Diminished Life: The Casualties of Coercion, HASTINGS CENTER REP., Jan.-Feb. 1994, at 33, 37.
216. Daar, supra note 8, at 1245 (quoting Lawrence J. Nelson & Robert M. Nelson, Ethics and the Provision of Futile, Harmful, or Burdensome Treatment to Children, 20 CRITICAL CARE MED. 427 (1992)).
217. See, e.g., BEAUCHAMP & CHILDRESS, supra note 8, at 214 (stating that it is unjustified for clinicians to treat against a patient's best interests); FURROW, HEALTH LAW, supra note 133, at 767 (noting ethical obligation to treat patients with dignity); Miles, supra note 16, at 311.
218. Cf. Daar, supra note 8, at 1245.
219. Mary Crossley, Infants with Anencephaly, the ADA, and the Child Abuse Amendments, 11 ISSUES L. & MED. 379, 402-03 (1995-96).
220. See supra text accompanying notes 26-28.
221. See supra text accompanying note 33.
222. See supra text accompanying note 32.
223. Morreim, supra note 184, at 34.
224. Id. at 33-36.
225. My willingness to tolerate quality-of-life judgments may be influenced by my own belief that quality of life matters. In addition, I believe that the argument for prohibiting quality-of-life considerations altogether is weakened by disability rights advocates' acknowledgement that quality of life is relevant when a treatment (rather than a disability) imposes a burden on the patient. See supra text accompanying note 172.
226. At least one medical commentator has erroneously assumed that transferability would moot the legal issues. Miles, supra note 16, at 312. While it may preclude a tort abandonment claim under some circumstances, a transfer motivated by antidisability bias would be actionable under the ADA. See Glanz v. Vernick, 750 F. Supp. 39 (D. Mass. 1990).
227. See supra note 188.
228. If, as seems likely, state courts constitute an "instrumentality of a State," then Title II of the ADA applies to them. See 42 U.S.C. § 12131(1) (1994); see also supra note 40.
229. See, e.g., Superintendent of Belchertown State Sch. v. Saikewicz, 370 N.E.2d 417 (Mass. 1977); Crossley, supra note 8, at 186.
230. See Bopp & Coleson, supra note 29, at 825-27 (describing the case of Baby Terry).
231. Morreim, supra note 184, at 33.
232. Daar, supra note 8; Morreim, supra note 184, at 38.
233. The Supreme Court's Title VII analysis may also be distinguishable on other grounds. Most obviously, the Supreme Court's observations were made in the context of BFOQ analysis. Proving a BFOQ is harder than showing a business necessity. In addition, the Court was interpreting a statutory text requiring that eligibility criteria be related to ability to work. By contrast, the language governing eligibility criteria for medical services (necessary and essential) is more general and potentially places fewer restrictions on consideration of disability.
234. See infra note 213.
235. See Daar, supra note 8, at 1241-45 (collecting and discussing authorities).
236. If they adopt this view, courts interpreting the disability rights laws would have to conclude that it is necessary and essential for physicians to opt out of care that they do not believe will advance the welfare of their patients, even when the patient disagrees.
237. W. PAGE KEETON ET AL., PROSSER AND KEETON ON THE LAW OF TORTS § 32, at 189 (5th ed. 1984).
238. JOSEPH H. KING, JR., THE LAW OF MEDICAL MALPRACTICE 23 (2d ed. 1986).
239. 28 C.F.R. § 35.130(e) (1995).
240. Morreim, supra note 184, at 33, 35.
241. Id. at 33.
242. Id. at 38; Daar, supra note 8.
243. Morreim, supra note 184, at 38. Judith Daar later made the same suggestion about early notice. Judith F. Daar, Medical Futility and Implications for Physician Autonomy, 21 AM. J.L. & MED. 221, 239 (1995).
244. See CHOICE IN DYING, INC., 1995 RIGHT-TO-DIE LAW DIGEST (Noncompliance Provisions in Living Will Statutes; Noncompliance Provisions in Statutes Authorizing Health Care Agents). When the question is not governed by a statute, the courts have split. Compare, e.g., Brophy v. New England Sinai Hosp., 497 N.E.2d 26 (Mass. 1986) (holding that a hospital does not have to participate in removing life-sustaining measures, but that it must assist in transferring a patient to a doctor who will) with Bouvia v. Superior Court, 225 Cal. Rptr. 297, 306 (Cal. Ct. App. 1986) (holding that hospital must follow patient's wishes to have life-sustaining measures discontinued).
245. Daar, supra note 8, at 1277-80.
246. Minnesota Living Will Act, MINN. STAT. § 145B.05 (1996) (stating that physicians are bound to comply with living will "within the limits of reasonable medical practice"); Health Care Decisions Act, VA. CODE ANN. § 54.1-2990 (Michie 1992) (declaring treatment not required if "medically or ethically inappropriate"). The Veterans Administration also concluded that treatments which "would not accord with prevailing medical practice . . . need not be presented for patient consideration." DEPARTMENT OF VETERANS AFFAIRS, VETERANS HEALTH ADMINISTRATION, 1993, MANUAL M-2, Clinical Affairs, pt. I, ch. 31, "Withholding and Withdrawal of Life-Sustaining Treatment," quoted in Bethany Spielman, Futility and Bargaining Power, 6 J. CLINICAL ETHICS 44, 49 (1995).
247. See KEETON ET AL., supra note 206, § 32, at 185-89; KING, supra note 207, at 39-43 (discussing standard of care).
248. See, e.g., Payton v. Weaver, 182 Cal. Rptr. 225 (Cal. Ct. App. 1982) (holding that a doctor who gave sufficient notice could relinquish obligation to continue treatment of a woman with renal disease); KING, supra note 207, at 23-29.
249. 42 U.S.C. § 12182(b)(2)(A)(ii) (1994) ("necessary to afford such . . . services").
250. It is not clear whether the antidiscrimination laws could support an obligation to treat the patient if transfer were impossible. Arguably, the reasonable accommodation requirement mandates as much. On the other hand, the reasonable accommodation requirement has already been stretched quite far to encompass an obligation to assist in transfer of a patient whose anticipated treatment the provider believes to be cruel. Requiring treatment when transfer efforts fail seems to go beyond accommodation and effectively trumps the physician's claim of conscience. Indeed, the patient's inability to locate a physician who will provide life-sustaining care goes a long way to establishing the reasonableness of the recalcitrant physician's views. However, no firm conclusions can be drawn until we have some clinical experience with an "opt out" compromise and have a better sense of its actual consequences.
251. The hornbook law of malpractice is already nearly sufficient to play that role. Because reasonable notice is already required before a physician terminates her relationship with a patient, see supra text accompanying note 207, the only troubling shortcoming in traditional state law is the possibility that physicians would be permitted to forego life-extending care within an existing relationship if the treatment is not customary. See supra note 206. As yet, no reported decision has addressed this issue. As a result, state court imposition of a duty to offer non-customary life-sustaining care pending transfer is uncertain. Because the policy reasons behind a duty to cooperate with transfer are powerful, however, it is quite possible that state courts will impose it. However, because the question is currently unanswered as a matter of state law, federal courts can ensure a suitable balance between the rights of patients and physicians by imposing this obligation using the reasonable accommodations requirement.
252. See supra note 107.
253. See, e.g., Glanz v. Vernick, 750 F. Supp. 39 (D. Mass. 1990).
254. If this task proves too difficult, Congress will need to specify statutorily the permissible range of physician discretion, much as it has done with the Child Abuse Amendments. See infra text accompanying notes 258-59 (discussing the advantages and disadvantages of this approach). In the absence of such legislation, however, the courts could fashion a default rule similar to the one proposed in the text.
255. See BEAUCHAMP & CHILDRESS, supra note 8, at 218; E. Haavi Morreim, Futilitarianism, Exoticare, and Coerced Altruism: The ADA Meets Its Limits, 25 SETON HALL L. REV. 883, 897 (1995). Requiring that the physician's views fall within the range of reasonable disagreement is conceptually similar to the "respectable minority" rule of malpractice doctrine that exonerates physicians so long as they "pursue one of several recognized courses of treatment." Downer v. Veilleux, 322 A.2d 82, 87 (Me. 1974); KING, supra note 207, at 65-66.
256. Mildred Z. Solomon, How Physicians Talk About Futility: Making Words Mean Too Many Things, 21 J.L. MED. & ETHICS 231 (1993); see also S. Van McCrary et al., Physicians' Quantitative Assessments of Medical Futility, 5 J. CLINICAL ETHICS 100, 102 (1994) (noting that physicians consider lifesaving treatment to be futile if the odds of success fall below a cutoff point).
257. Mildred Z. Solomon, How Physicians Talk About Futility: Making Words Mean Too Many Things, 21 J.L. MED. & ETHICS 231 (1993); see also S. Van McCrary et al., Physicians' Quantitative Assessments of Medical Futility, 5 J. CLINICAL ETHICS 100, 102 (1994) (noting that physicians consider lifesaving treatment to be futile if the odds of success fall below a cutoff point).
258. Hall, supra note 4, at 723-25 (collecting medical authorities).
259. See, e.g., John D. Lantos, Futility Assessment and the Doctor-Patient Relationship, 42 J. AM. GERIATRICS SOC'Y 868, 869 (1994) (linking prospective payment systems with the futility debate); Miles, supra note 22, at 514 (noting that Helga Wanglie received roughly $700,000 in care "paid for by people who had not consented to underwrite [this] level of medical care").
260. See supra text accompanying note 35.
261. In none of the reported bedside futility cases litigated in the U.S. thus far has the provider or insurer explicitly raised the question of wise resource allocation in court. The judicial focus has been upon the competency of surrogate decision makers and the interests of the patient. See supra notes 2-4; supra text accompanying notes 26-33. However, a court in the United Kingdom reportedly ruled in 1992 that a London hospital could withhold life support from a severely brain-damaged eighteen-month-old child on the ground that it had "too few resources to treat all the patients whom they would like to treat." Re J [A Minor][Medical Treatment] (C.A. 10 June 1992), quoted in Ross Kessel, British Judges Cannot Order Doctors to Treat, HASTINGS CENTER REP., July-Aug. 1992, at 3-4. Although American courts have not addressed the disability rights implications of bedside treatment decisions, they have sometimes relied on resource limits as a basis for permitting private and governmental benefits plans to selectively assist specific disabilities. See supra note 119 (collecting cases). However, unlike the bedside futility disputes, none of the plans at issue in those cases denied access to life-sustaining care based on quality of life.
262. See Sullivan Letter, supra note 104; Peters, supra note 106, at 502-03 (describing the negotiations between Oregon and the federal government).
263. Hall, supra note 4, at 711.
264. Hadorn, supra note 93, at 2225; see also Alan Williams, Economics of Coronary Artery Bypass Grafting, 291 BRIT. MED. J. 326, 328-29 (1985) (arguing for redeployment of resources such that benefits "are high in relation to costs").
265. LARRY R. CHURCHILL, RATIONING HEALTH CARE IN AMERICA 95, 121-25 (1987); Hadorn, supra note 93, at 1454, 1547; Paul T. Menzel, Some Ethical Costs of Rationing, 20 LAW MED. & HEALTH CARE 57 (1992); Karen J. Merrikin & Thomas D. Overcast, Patient Selection for Heart Transplantation: When Is a Discriminating Choice Discrimination?, 10 J. HEALTH POL. POL'Y & L. 7, 15-18 (1985) (concluding that disabled candidates may be excluded if they are "unable to benefit" or have "[no] reasonable chance of a successful clinical outcome"); Orentlicher, supra note 35, at 312 (endorsing likelihood, duration, and degree of benefit); Steven A. Toms, Outcome Predictors in the Early Withdrawal of Life Support: Issues of Justice and Allocation for the Severely Brain Injured, 4 J. CLINICAL ETHICS 206, 210 (1993).
266. LARRY R. CHURCHILL, RATIONING HEALTH CARE IN AMERICA 95, 121-25 (1987); Hadorn, supra note 93, at 1454, 1547; Paul T. Menzel, Some Ethical Costs of Rationing, 20 LAW MED. & HEALTH CARE 57 (1992); Karen J. Merrikin & Thomas D. Overcast, Patient Selection for Heart Transplantation: When Is a Discriminating Choice Discrimination?, 10 J. HEALTH POL. POL'Y & L. 7, 15-18 (1985) (concluding that disabled candidates may be excluded if they are "unable to benefit" or have "[no] reasonable chance of a successful clinical outcome"); Orentlicher, supra note 35, at 312 (endorsing likelihood, duration, and degree of benefit); Steven A. Toms, Outcome Predictors in the Early Withdrawal of Life Support: Issues of Justice and Allocation for the Severely Brain Injured, 4 J. CLINICAL ETHICS 206, 210 (1993).
267. LARRY R. CHURCHILL, RATIONING HEALTH CARE IN AMERICA 95, 121-25 (1987); Hadorn, supra note 93, at 1454, 1547; Paul T. Menzel, Some Ethical Costs of Rationing, 20 LAW MED. & HEALTH CARE 57 (1992); Karen J. Merrikin & Thomas D. Overcast, Patient Selection for Heart Transplantation: When Is a Discriminating Choice Discrimination?, 10 J. HEALTH POL. POL'Y & L. 7, 15-18 (1985) (concluding that disabled candidates may be excluded if they are "unable to benefit" or have "[no] reasonable chance of a successful clinical outcome"); Orentlicher, supra note 35, at 312 (endorsing likelihood, duration, and degree of benefit); Steven A. Toms, Outcome Predictors in the Early Withdrawal of Life Support: Issues of Justice and Allocation for the Severely Brain Injured, 4 J. CLINICAL ETHICS 206, 210 (1993).
268. LARRY R. CHURCHILL, RATIONING HEALTH CARE IN AMERICA 95, 121-25 (1987); Hadorn, supra note 93, at 1454, 1547; Paul T. Menzel, Some Ethical Costs of Rationing, 20 LAW MED. & HEALTH CARE 57 (1992); Karen J. Merrikin & Thomas D. Overcast, Patient Selection for Heart Transplantation: When Is a Discriminating Choice Discrimination?, 10 J. HEALTH POL. POL'Y & L. 7, 15-18 (1985) (concluding that disabled candidates may be excluded if they are "unable to benefit" or have "[no] reasonable chance of a successful clinical outcome"); Orentlicher, supra note 35, at 312 (endorsing likelihood, duration, and degree of benefit); Steven A. Toms, Outcome Predictors in the Early Withdrawal of Life Support: Issues of Justice and Allocation for the Severely Brain Injured, 4 J. CLINICAL ETHICS 206, 210 (1993).
269. See, e.g., ROBERT M. VEATCH, THE FOUNDATIONS OF JUSTICE 138-45 (1986) (arguing for equality in resource allocation); Jerry Avorn, Benefit and Cost Analysis in Geriatric Care: Turning Age Discrimination into Health Policy, 310 NEW ENG. J. MED. 1294 (1984); John Harris, QALYfying the Value of Life, 13 J. MED. ETHICS 117, 120, 122 (1987) (arguing that life expectancy is irrelevant); John Harris, Unprincipled QALYs: A Response to Cubbon, 17 J. MED. ETHICS 185 (1991) (objecting to both life expectancy and quality of life considerations); Robert M. Veatch & Carol M. Spicer, Medically Futile Care: The Role of the Physician in Setting Limits, 18 AM. J.L. & MED. 15, 29 (1992); see also Dan W. Brock, Ethical Issues in Recipient Selection for Organ Transplantation, in ORGAN SUBSTITUTION TECHNOLOGY: ETHICAL, LEGAL, AND PUBLIC POLICY ISSUES 86, 93 (Deborah Mathieu ed., 1988) (describing the arguments for an equal chance or lottery to ration scarce organs).
270. See, e.g., ROBERT M. VEATCH, THE FOUNDATIONS OF JUSTICE 138-45 (1986) (arguing for equality in resource allocation); Jerry Avorn, Benefit and Cost Analysis in Geriatric Care: Turning Age Discrimination into Health Policy, 310 NEW ENG. J. MED. 1294 (1984); John Harris, QALYfying the Value of Life, 13 J. MED. ETHICS 117, 120, 122 (1987) (arguing that life expectancy is irrelevant); John Harris, Unprincipled QALYs: A Response to Cubbon, 17 J. MED. ETHICS 185 (1991) (objecting to both life expectancy and quality of life considerations); Robert M. Veatch & Carol M. Spicer, Medically Futile Care: The Role of the Physician in Setting Limits, 18 AM. J.L. & MED. 15, 29 (1992); see also Dan W. Brock, Ethical Issues in Recipient Selection for Organ Transplantation, in ORGAN SUBSTITUTION TECHNOLOGY: ETHICAL, LEGAL, AND PUBLIC POLICY ISSUES 86, 93 (Deborah Mathieu ed., 1988) (describing the arguments for an equal chance or lottery to ration scarce organs).
271. See, e.g., ROBERT M. VEATCH, THE FOUNDATIONS OF JUSTICE 138-45 (1986) (arguing for equality in resource allocation); Jerry Avorn, Benefit and Cost Analysis in Geriatric Care: Turning Age Discrimination into Health Policy, 310 NEW ENG. J. MED. 1294 (1984); John Harris, QALYfying the Value of Life, 13 J. MED. ETHICS 117, 120, 122 (1987) (arguing that life expectancy is irrelevant); John Harris, Unprincipled QALYs: A Response to Cubbon, 17 J. MED. ETHICS 185 (1991) (objecting to both life expectancy and quality of life considerations); Robert M. Veatch & Carol M. Spicer, Medically Futile Care: The Role of the Physician in Setting Limits, 18 AM. J.L. & MED. 15, 29 (1992); see also Dan W. Brock, Ethical Issues in Recipient Selection for Organ Transplantation, in ORGAN SUBSTITUTION TECHNOLOGY: ETHICAL, LEGAL, AND PUBLIC POLICY ISSUES 86, 93 (Deborah Mathieu ed., 1988) (describing the arguments for an equal chance or lottery to ration scarce organs).
272. See, e.g., ROBERT M. VEATCH, THE FOUNDATIONS OF JUSTICE 138-45 (1986) (arguing for equality in resource allocation); Jerry Avorn, Benefit and Cost Analysis in Geriatric Care: Turning Age Discrimination into Health Policy, 310 NEW ENG. J. MED. 1294 (1984); John Harris, QALYfying the Value of Life, 13 J. MED. ETHICS 117, 120, 122 (1987) (arguing that life expectancy is irrelevant); John Harris, Unprincipled QALYs: A Response to Cubbon, 17 J. MED. ETHICS 185 (1991) (objecting to both life expectancy and quality of life considerations); Robert M. Veatch & Carol M. Spicer, Medically Futile Care: The Role of the Physician in Setting Limits, 18 AM. J.L. & MED. 15, 29 (1992); see also Dan W. Brock, Ethical Issues in Recipient Selection for Organ Transplantation, in ORGAN SUBSTITUTION TECHNOLOGY: ETHICAL, LEGAL, AND PUBLIC POLICY ISSUES 86, 93 (Deborah Mathieu ed., 1988) (describing the arguments for an equal chance or lottery to ration scarce organs).
273. See, e.g., ROBERT M. VEATCH, THE FOUNDATIONS OF JUSTICE 138-45 (1986) (arguing for equality in resource allocation); Jerry Avorn, Benefit and Cost Analysis in Geriatric Care: Turning Age Discrimination into Health Policy, 310 NEW ENG. J. MED. 1294 (1984); John Harris, QALYfying the Value of Life, 13 J. MED. ETHICS 117, 120, 122 (1987) (arguing that life expectancy is irrelevant); John Harris, Unprincipled QALYs: A Response to Cubbon, 17 J. MED. ETHICS 185
274. See, e.g., ROBERT M. VEATCH, THE FOUNDATIONS OF JUSTICE 138-45 (1986) (arguing for equality in resource allocation); Jerry Avorn, Benefit and Cost Analysis in Geriatric Care: Turning Age Discrimination into Health Policy, 310 NEW ENG. J. MED. 1294 (1984); John Harris, QALYfying the Value of Life, 13 J. MED. ETHICS 117, 120, 122 (1987) (arguing that life expectancy is irrelevant); John Harris, Unprincipled QALYs: A Response to Cubbon, 17 J. MED. ETHICS 185 (1991) (objecting to both life expectancy and quality of life considerations); Robert M. Veatch & Carol M. Spicer, Medically Futile Care: The Role of the Physician in Setting Limits, 18 AM. J.L. & MED. 15, 29 (1992); see also Dan W. Brock, Ethical Issues in Recipient Selection for Organ Transplantation, in ORGAN SUBSTITUTION TECHNOLOGY: ETHICAL, LEGAL, AND PUBLIC POLICY ISSUES 86, 93 (Deborah Mathieu ed., 1988) (describing the arguments for an equal chance or lottery to ration scarce organs).
275. See Harris, QALYfying the Value of Life, supra note 234, at 121.
276. See Morreim, supra note 224, at 887 (describing this view).
277. BEAUCHAMP & CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 270-72, 296-97 (3d ed. 1989).
278. Quantitative measures of treatment effectiveness are less controversial than quality-of-life assessments because they do not treat the lives of disabled persons as less valuable. As with patient welfare decisions, however, rationing based on quantitative factors can raise discrimination issues of its own. From a strong egalitarian perspective, factors like the odds of success should not be used when the result is to disfavor persons with disabilities. That could occur, for example, when a patient with schizophrenia is excluded from a heart transplantation program. See Orentlicher, supra note 50, at 57. Egalitarians dislike exclusions of this kind because the patient's poor odds do not reflect the person's worth, merit, or need. Harris, QALYfying the Value of Life, supra note 234, at 117, 121. David Orentlicher cogently argues that poor outcomes may be the product of a biased allocation of research funding and interest. Orentlicher, supra note 50, at 66-71. Nevertheless, even egalitarian scholars seem to have conceded that a point can be reached when the odds of success are too low to justify the cost. See infra text accompanying notes 239-40. And the federal government has apparently permitted Oregon to take odds into account in its Medicaid plan. See Peters, supra note 106, at 522-23. As a legal matter, however, the issue remains unresolved. For a more extended discussion of the issue, see Orentlicher, supra note 50, at 58, 71-74; Peters, supra note 106, at 517-33. Even if quantitative considerations are deemed permissible, other disability rights issues will remain. For example, the rationing decision must not be based on unfounded, stereotypical assumptions about the outcomes of patients with disabilities. Less obviously, David Orentlicher has suggested that the reasonable accommodations requirement restricts the use of effectiveness data to situations where the expected benefit is "minimal" and the cost of the treatment would be "high." Orentlicher, supra note 50, at 72-73. His proposal is a logical corollary of the idea, noted above, that discrimination should be tolerated only at the extremes. Although most futility cases are likely to lie at this extreme, a discrimination claim may lie in the case that does not.
279. See Robert M. Veatch, Justice and Outcomes Research: The Ethical Limits, 4 J. CLINICAL ETHICS 258 (1993) (concluding that rationing of marginally effective care is inevitable).
280. See Orentlicher, supra note 50, at 72 (stating that it is appropriate to ration care that fails to provide a reasonable minimum benefit and incurs a high "monetary" or "financial" cost).
281. See, e.g., Letter from Timothy B. Flanagan, Assistant Attorney General, Office of Legal Counsel, U.S. Department of Justice, to Susan K. Zagame, Acting General Counsel, U.S. Department of Health and Human Services (Jan. 19, 1993), in 9 ISSUES L. & MED. 418 (1994); Attachment to Sullivan Letter, supra note 104, at 409, 410-12; James V. Garvey, Note, Health Care Rationing and the Americans with Disabilities Act of 1990: What Protection Should the Disabled Be Afforded?, 68 NOTRE DAME L. REV. 581, 583-84, 615 (1993); Nancy K. Stade, Note, The Use of Quality of Life Measures to Ration Health Care: Reviving a Rejected Proposal, 93 COLUM. L. REV. 1985, 2010, 2017-20 (1993) (suggesting that quality of life considerations violate the ADA, but recommending that the statute be amended to permit their use). This was one basis of the Federal Government's objection to the Oregon rationing plan. Sullivan Letter, supra note 104, at 409; see also Peters, supra note 106, at 503-04.
282. See, e.g., Letter from Timothy B. Flanagan, Assistant Attorney General, Office of Legal Counsel, U.S. Department of Justice, to Susan K. Zagame, Acting General Counsel, U.S. Department of Health and Human Services (Jan. 19, 1993), in 9 ISSUES L. & MED. 418 (1994); Attachment to Sullivan Letter, supra note 104, at 409, 410-12; James V. Garvey, Note, Health Care Rationing and the Americans with Disabilities Act of 1990: What Protection Should the Disabled Be Afforded?, 68 NOTRE DAME L. REV. 581, 583-84, 615 (1993); Nancy K. Stade, Note, The Use of Quality of Life Measures to Ration Health Care: Reviving a Rejected Proposal, 93 COLUM. L. REV. 1985, 2010, 2017-20 (1993) (suggesting that quality of life considerations violate the ADA, but recommending that the statute be amended to permit their use). This was one basis of the Federal Government's objection to the Oregon rationing plan. Sullivan Letter, supra note 104, at 409; see also Peters, supra note 106, at 503-04.
283. It is important to note, however, that no threat to the principle of equal worth arises when quality-enhancing, rather than life-saving care is rationed because no value needs to be placed on the patient's life. For a lengthier discussion of the distinction between quality-enhancing and life-sustaining care, see Peters, supra note 106, at 543-46.
284. Programs that seek to allocate their available resources in a way that will maximize health outcomes can presumably prove that consideration of effectiveness is "necessary" or "essential" to achieve their objective. See id. at 517-20. The harder question is whether the objective of maximizing outcomes is itself sufficiently essential to justify disability-based classifications. See id. at 520-46. The uncertainties about this question explored in the text make judicial caution appropriate. For a more extended discussion of the issue in the context of health benefits plans, see id.
285. A corollary of this shift from protecting patient welfare to maximizing health benefits is that the value of saving one life must be compared with the value of saving another life. To say that one patient's life is less worth saving than another's seems different from saying that a particular life-sustaining therapy should be foregone because the patient will not benefit. Rationing pits life-saving care for one patient against life-saving care for another.
286. Although none of the existing medical studies examine the impact of quality of life considerations, several recent studies have found that cost savings from the rationing of borderline care would be less than might be expected. See, e.g., Alexander M. Capron, Medical Futility: Strike Two, HASTINGS CENTER REP., Sept.-Oct. 1994, at 42, 43 (reporting on a study of care offering a less than 1% chance of two-month survival); Ezekiel J. Emanuel & Linda L. Emanuel, The Economics of Dying: The Illusion of Cost Savings at the End of Life, 330 NEW ENG. J. MED. 540, 540-43 (1994).
287. Although none of the existing medical studies examine the impact of quality of life considerations, several recent studies have found that cost savings from the rationing of borderline care would be less than might be expected. See, e.g., Alexander M. Capron, Medical Futility: Strike Two, HASTINGS CENTER REP., Sept.-Oct. 1994, at 42, 43 (reporting on a study of care offering a less than 1% chance of two-month survival); Ezekiel J. Emanuel & Linda L. Emanuel, The Economics of Dying: The Illusion of Cost Savings at the End of Life, 330 NEW ENG. J. MED. 540, 540-43 (1994).
288. Just as an employer must accept some lost economic benefit to result from its obligation to make reasonable accommodations, so too must a provider or health plan. See Orentlicher, supra note 50, at 75.
289. See, e.g., Einer Elhauge, Allocating Health Care Morally, 82 CAL. L. REV. 1449, 1510 (1994) (suggesting that most people would want it to play more than a supplemental role); David C. Hadorn, The Oregon Priority-Setting Exercise: Quality of Life and Public Policy, HASTINGS CENTER REF., May-June 1991, at Supp. 11; Hadorn, supra note 35, at 1455; Paul T. Menzel, Oregon's Denial: Disabilities and Quality of Life, HASTINGS CENTER REP., Nov.-Dec. 1992, at 21; see also Alexander M. Capron, Oregon's Disability: Principles or Politics?, HASTINGS CENTER REP., Nov.-Dec. 1992, at 18, 20 (suggesting that ranking on the basis of disability is permitted, but that exclusions based on disability are not).
290. See, e.g., Einer Elhauge, Allocating Health Care Morally, 82 CAL. L. REV. 1449, 1510 (1994) (suggesting that most people would want it to play more than a supplemental role); David C. Hadorn, The Oregon Priority-Setting Exercise: Quality of Life and Public Policy, HASTINGS CENTER REF., May-June 1991, at Supp. 11; Hadorn, supra note 35, at 1455; Paul T. Menzel, Oregon's Denial: Disabilities and Quality of Life, HASTINGS CENTER REP., Nov.-Dec. 1992, at 21; see also Alexander M. Capron, Oregon's Disability: Principles or Politics?, HASTINGS CENTER REP., Nov.-Dec. 1992, at 18, 20 (suggesting that ranking on the basis of disability is permitted, but that exclusions based on disability are not).
291. See, e.g., Einer Elhauge, Allocating Health Care Morally, 82 CAL. L. REV. 1449, 1510 (1994) (suggesting that most people would want it to play more than a supplemental role); David C. Hadorn, The Oregon Priority-Setting Exercise: Quality of Life and Public Policy, HASTINGS CENTER REF., May-June 1991, at Supp. 11; Hadorn, supra note 35, at 1455; Paul T. Menzel, Oregon's Denial: Disabilities and Quality of Life, HASTINGS CENTER REP., Nov.-Dec. 1992, at 21; see also Alexander M. Capron, Oregon's Disability: Principles or Politics?, HASTINGS CENTER REP., Nov.-Dec. 1992, at 18, 20 (suggesting that ranking on the basis of disability is permitted, but that exclusions based on disability are not).
292. See, e.g., Einer Elhauge, Allocating Health Care Morally, 82 CAL. L. REV. 1449, 1510 (1994) (suggesting that most people would want it to play more than a supplemental role); David C. Hadorn, The Oregon Priority-Setting Exercise: Quality of Life and Public Policy, HASTINGS CENTER REF., May-June 1991, at Supp. 11; Hadorn, supra note 35, at 1455; Paul T. Menzel, Oregon's Denial: Disabilities and Quality of Life, HASTINGS CENTER REP., Nov.-Dec. 1992, at 21; see also Alexander M. Capron, Oregon's Disability: Principles or Politics?, HASTINGS CENTER REP., Nov.-Dec. 1992, at 18, 20 (suggesting that ranking on the basis of disability is permitted, but that exclusions based on disability are not).
293. For an elaboration of this point, see Peters, supra note 106, at 517-33.
294. Judith W. Ross, The Puzzle of the Permanently Unconscious, HASTINGS CENTER REP., May-June 1992, at 2, 3.
295. Her care reportedly cost $246,000 between her birth on Oct. 13, 1992, and mid-June of 1993 for hospital care alone. She resided in a nursing home when not hospitalized. Jane B. Quinn, Taking Back Health Care, NEWSWEEK, June 27, 1994, at 36. Ellen Wright Clayton thoughtfully asks what we would do if Baby K had needed a heart transplant or dialysis. See Ellen W. Clayton, Breathing for Baby K, ASLME BRIEFINGS, No. 10, Summer 1994 at 1, 2. Baby K died in the spring of 1996 despite aggressive care.
296. Her care reportedly cost $246,000 between her birth on Oct. 13, 1992, and mid-June of 1993 for hospital care alone. She resided in a nursing home when not hospitalized. Jane B. Quinn, Taking Back Health Care, NEWSWEEK, June 27, 1994, at 36. Ellen Wright Clayton thoughtfully asks what we would do if Baby K had needed a heart transplant or dialysis. See Ellen W. Clayton, Breathing for Baby K, ASLME BRIEFINGS, No. 10, Summer 1994 at 1, 2. Baby K died in the spring of 1996 despite aggressive care.
297. See supra text following note 207.
298. See infra text accompanying notes 262-71.
299. Patients would, therefore, be free to fund the disputed care with their own resources, to appeal the rationing decision to their insurer, to seek other sources of financing, or to seek gratuitous services.
300. Morreim, supra note 224, at 924-25.
301. Id.
302. The extent to which physicians have a role as rationers is considered in subpart V.B.
303. Peters, supra note 106, at 541.
304. See e.g., Elhauge, supra note 247, at 1540 (arguing that risk-adjusted premiums ought not reflect costs of "heroic measures that do no more than postpone death in an unconscious, painful, or temporary state near the end of life"); Ronald Dworkin, Will Clinton's Plan Be Fair?, N.Y. REV. BOOKS, Jan. 13, 1994, at 20, 23 (concluding that individuals would not desire insurance coverage for vegetative or demented states or care for the elderly that would extend life only a few months).
305. Levinsky, supra note 147, at 797.
306. Especially skeptical courts could even impose a clear and convincing evidence standard.
307. See supra text accompanying notes 210-20. In addition, reasonable accommodations might include a right to appeal an adverse decision to others in the health insurance plan to assure fairness and consistency across the plan. Courts might even require that physicians demonstrate that an obligation to render treatments like the one in dispute would have a significant impact on patient access to more effective care or on health insurance premiums and thus would constitute an undue burden on the provider or plan. See Orentlicher, supra note 50, at 72 (suggesting that reasonable accommodations preclude disability-based decisions in health care unless the treatment would be very expensive and would not be minimally beneficial); see also EQUAL EMPLOYMENT OPPORTUNITY COMM'N, supra note 50.
308. In addition, defensible rationing decisions will often require reliable data about the cost-effectiveness of the disputed treatment and an understanding of either the cost-effectiveness threshold established by available resources or the cost-effectiveness of other competing marginally effective treatments. But if, as proposed here, quality-of-life criteria can only be used to determine whether the treatment confers any benefit at all, the data problem is obviated considerably Instead, the provider must show that his beliefs about minimal quality of life are genuine and fall with the range of reasonable disagreement. Survey or research data that examine disabled patients' perceptions about their quality of life would be relevant in determining whether the physician's beliefs are reasonable. See Peters, supra note 106, at nn.200-02.
309. As a general normative matter, physician rationing raises fundamental questions about the nature of the physician-patient relationship and the extent to which it can or should survive the "dual agency" that arises when physicians act as rationers. See, e.g., Marcia Angell, The Doctor as Double Agent, 3 KENNEDY INST. ETHICS J. 279 (1993); Paul T. Menzel, Double Agency and the Ethics of Rationing Health Care: A Response to Marcia Angell, 3 KENNEDY INST. ETHICS J. 287 (1993). See also COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, AM. MED. ASS'N, Ethical Issues in Managed Care, 273 JAMA 330, 332, 334 (1995) (rejecting bedside rationing, but then fudging by limiting the objection to cost-benefit judgments that "go beyond" those made "as part of their normal professional responsibilities"); Hall, supra note 4. The conflict is especially acute when physicians are given financial incentives to contain costs by reducing utilization. See MARC A. RODWIN, MEDICINE, MONEY AND MORALS: PHYSICIANS' CONFLICTS OF INTEREST (1993); Hall, supra note 4, at 758-76. Yet, clinicians can individualize their allocation decision to the circumstances of individual patients far better than insurers can. As a result, they will have to play an important role in the rational allocation of health resources. See, e.g., Susan D. Goold & Howard Brody, Rationing Decisions in Managed Care Settings: An Ethical Analysis, in HEALTH CARE CRISIS? THE SEARCH FOR ANSWERS 135, 139 (Robert I. Misbin et al. eds., 1995); Hall, supra note 4, at 701-02; Miles, supra note 16, at 313; David Orentlicher, Paying Physicians to Do Less: Financial Incentives to Limit Care, 30 U. RICH. L. REV. 155 (1996). Indeed, physicians have always played a stewardship role to some extent. They routinely make unarticulated cost-benefit decisions when making determinations such as whether to order diagnostic tests, preventive screenings, referral to specialists, or hospitalization. If every treatment of conceivable benefit were ordered, as Mark Hall notes, we would all have whole body MRI scans regularly. Hall, supra note 4, at 723. Tort law recognizes this stewardship role by delegating determination of the standard of care to medical custom. KEETON ET AL., supra note 206, § 32, at 189 & nn.51-57. In fact, a few states have recently enacted legislation explicitly protecting physicians from liability for withholding "ethically inappropriate" or "medically ineffective" care. See supra note 215. On the other hand, there is much less reason to believe that an unstated consensus in favor of physician rationing in general supports physician decisions about a minimally adequate quality of life in particular. Ultimately, a marriage between payers and providers may yield the most ideal rationing process. Insurers and government assistance plans not only have a better sense of current budget constraints than clinicians, but they may also be better positioned to consider customer or taxpayer preferences about the role that bedside rationing should play vis-à-vis other methods of controlling costs, including categorical exclusions of some kinds of coverage (such as dental, mental, or infertility care) and random allocations (such as first-come-first-served). They may also be better situated than practitioners to screen the many medical specialties in search of the most wasteful practices and to impose a relatively uniform threshold of cost-effectiveness across diverse areas of practice. In the long term, the respective strength of payors and providers could be combined. Clinicians could be given discretion to individualize within parameters set by pubic policy, government agencies, and organizations with access to defensible comparative data and public input.
310. As a general normative matter, physician rationing raises fundamental questions about the nature of the physician-patient relationship and the extent to which it can or should survive the "dual agency" that arises when physicians act as rationers. See, e.g., Marcia Angell, The Doctor as Double Agent, 3 KENNEDY INST. ETHICS J. 279 (1993); Paul T. Menzel, Double Agency and the Ethics of Rationing Health Care: A Response to Marcia Angell, 3 KENNEDY INST. ETHICS J. 287 (1993). See also COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, AM. MED. ASS'N, Ethical Issues in Managed Care, 273 JAMA 330, 332, 334 (1995) (rejecting bedside rationing, but then fudging by limiting the objection to cost-benefit judgments that "go beyond" those made "as part of their normal professional responsibilities"); Hall, supra note 4. The conflict is especially acute when physicians are given financial incentives to contain costs by reducing utilization. See MARC A. RODWIN, MEDICINE, MONEY AND MORALS: PHYSICIANS' CONFLICTS OF INTEREST (1993); Hall, supra note 4, at 758-76. Yet, clinicians can individualize their allocation decision to the circumstances of individual patients far better than insurers can. As a result, they will have to play an important role in the rational allocation of health resources. See, e.g., Susan D. Goold & Howard Brody, Rationing Decisions in Managed Care Settings: An Ethical Analysis, in HEALTH CARE CRISIS? THE SEARCH FOR ANSWERS 135, 139 (Robert I. Misbin et al. eds., 1995); Hall, supra note 4, at 701-02; Miles, supra note 16, at 313; David Orentlicher, Paying Physicians to Do Less: Financial Incentives to Limit Care, 30 U. RICH. L. REV. 155 (1996). Indeed, physicians have always played a stewardship role to some extent. They routinely make unarticulated cost-benefit decisions when making determinations such as whether to order diagnostic tests, preventive screenings, referral to specialists, or hospitalization. If every treatment of conceivable benefit were ordered, as Mark Hall notes, we would all have whole body MRI scans regularly. Hall, supra note 4, at 723. Tort law recognizes this stewardship role by delegating determination of the standard of care to medical custom. KEETON ET AL., supra note 206, § 32, at 189 & nn.51-57. In fact, a few states have recently enacted legislation explicitly protecting physicians from liability for withholding "ethically inappropriate" or "medically ineffective" care. See supra note 215. On the other hand, there is much less reason to believe that an unstated consensus in favor of physician rationing in general supports physician decisions about a minimally adequate quality of life in particular. Ultimately, a marriage between payers and providers may yield the most ideal rationing process. Insurers and government assistance plans not only have a better sense of current budget constraints than clinicians, but they may also be better positioned to consider customer or taxpayer preferences about the role that bedside rationing should play vis-à-vis other methods of controlling costs, including categorical exclusions of some kinds of coverage (such as dental, mental, or infertility care) and random allocations (such as first-come-first-served). They may also be better situated than practitioners to screen the many medical specialties in search of the most wasteful practices and to impose a relatively uniform threshold of cost-effectiveness across diverse areas of practice. In the long term, the respective strength of payors and providers could be combined. Clinicians could be given discretion to individualize within parameters set by pubic policy, government agencies, and organizations with access to defensible comparative data and public input.
311. As a general normative matter, physician rationing raises fundamental questions about the nature of the physician-patient relationship and the extent to which it can or should survive the "dual agency" that arises when physicians act as rationers. See, e.g., Marcia Angell, The Doctor as Double Agent, 3 KENNEDY INST. ETHICS J. 279 (1993); Paul T. Menzel, Double Agency and the Ethics of Rationing Health Care: A Response to Marcia Angell, 3 KENNEDY INST. ETHICS J. 287 (1993). See also COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, AM. MED. ASS'N, Ethical Issues in Managed Care, 273 JAMA 330, 332, 334 (1995) (rejecting bedside rationing, but then fudging by limiting the objection to cost-benefit judgments that "go beyond" those made "as part of their normal professional responsibilities"); Hall, supra note 4. The conflict is especially acute when physicians are given financial incentives to contain costs by reducing utilization. See MARC A. RODWIN, MEDICINE, MONEY AND MORALS: PHYSICIANS' CONFLICTS OF INTEREST (1993); Hall, supra note 4, at 758-76. Yet, clinicians can individualize their allocation decision to the circumstances of individual patients far better than insurers can. As a result, they will have to play an important role in the rational allocation of health resources. See, e.g., Susan D. Goold & Howard Brody, Rationing Decisions in Managed Care Settings: An Ethical Analysis, in HEALTH CARE CRISIS? THE SEARCH FOR ANSWERS 135, 139 (Robert I. Misbin et al. eds., 1995); Hall, supra note 4, at 701-02; Miles, supra note 16, at 313; David Orentlicher, Paying Physicians to Do Less: Financial Incentives to Limit Care, 30 U. RICH. L. REV. 155 (1996). Indeed, physicians have always played a stewardship role to some extent. They routinely make unarticulated cost-benefit decisions when making determinations such as whether to order diagnostic tests, preventive screenings, referral to specialists, or hospitalization. If every treatment of conceivable benefit were ordered, as Mark Hall notes, we would all have whole body MRI scans regularly. Hall, supra note 4, at 723. Tort law recognizes this stewardship role by delegating determination of the standard of care to medical custom. KEETON ET AL., supra note 206, § 32, at 189 & nn.51-57. In fact, a few states have recently enacted legislation explicitly protecting physicians from liability for withholding "ethically inappropriate" or "medically ineffective" care. See supra note 215. On the other hand, there is much less reason to believe that an unstated consensus in favor of physician rationing in general supports physician decisions about a minimally adequate quality of life in particular. Ultimately, a marriage between payers and providers may yield the most ideal rationing process. Insurers and government assistance plans not only have a better sense of current budget constraints than clinicians, but they may also be better positioned to consider customer or taxpayer preferences about the role that bedside rationing should play vis-à-vis other methods of controlling costs, including categorical exclusions of some kinds of coverage (such as dental, mental, or infertility care) and random allocations (such as first-come-first-served). They may also be better situated than practitioners to screen the many medical specialties in search of the most wasteful practices and to impose a relatively uniform threshold of cost-effectiveness across diverse areas of practice. In the long term, the respective strength of payors and providers could be combined. Clinicians could be given discretion to individualize within parameters set by pubic policy, government agencies, and organizations with access to defensible comparative data and public input.
312. As a general normative matter, physician rationing raises fundamental questions about the nature of the physician-patient relationship and the extent to which it can or should survive the "dual agency" that arises when physicians act as rationers. See, e.g., Marcia Angell, The Doctor as Double Agent, 3 KENNEDY INST. ETHICS J. 279 (1993); Paul T. Menzel, Double Agency and the Ethics of Rationing Health Care: A Response to Marcia Angell, 3 KENNEDY INST. ETHICS J. 287 (1993). See also COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, AM. MED. ASS'N, Ethical Issues in Managed Care, 273 JAMA 330, 332, 334 (1995) (rejecting bedside rationing, but then fudging by limiting the objection to cost-benefit judgments that "go beyond" those made "as part of their normal professional responsibilities"); Hall, supra note 4. The conflict is especially acute when physicians are given financial incentives to contain costs by reducing utilization. See MARC A. RODWIN, MEDICINE, MONEY AND MORALS: PHYSICIANS' CONFLICTS OF INTEREST (1993); Hall, supra note 4, at 758-76. Yet, clinicians can individualize their allocation decision to the circumstances of individual patients far better than insurers can. As a result, they will have to play an important role in the rational allocation of health resources. See, e.g., Susan D. Goold & Howard Brody, Rationing Decisions in Managed Care Settings: An Ethical Analysis, in HEALTH CARE CRISIS? THE SEARCH FOR ANSWERS 135, 139 (Robert I. Misbin et al. eds., 1995); Hall, supra note 4, at 701-02; Miles, supra note 16, at 313; David Orentlicher, Paying Physicians to Do Less: Financial Incentives to Limit Care, 30 U. RICH. L. REV. 155 (1996). Indeed, physicians have always played a stewardship role to some extent. They routinely make unarticulated cost-benefit decisions when making determinations such as whether to order diagnostic tests, preventive screenings, referral to specialists, or hospitalization. If every treatment of conceivable benefit were ordered, as Mark Hall notes, we would all have whole body MRI scans regularly. Hall, supra note 4, at 723. Tort law recognizes this stewardship role by delegating determination of the standard of care to medical custom. KEETON ET AL., supra note 206, § 32, at 189 & nn.51-57. In fact, a few states have recently enacted legislation explicitly protecting physicians from liability for withholding "ethically inappropriate" or "medically ineffective" care. See supra note 215. On the other hand, there is much less reason to believe that an unstated consensus in favor of physician rationing in general supports physician decisions about a minimally adequate quality of life in particular. Ultimately, a marriage between payers and providers may yield the most ideal rationing process. Insurers and government assistance plans not only have a better sense of current budget constraints than clinicians, but they may also be better positioned to consider customer or taxpayer preferences about the role that bedside rationing should play vis-à-vis other methods of controlling costs, including categorical exclusions of some kinds of coverage (such as dental, mental, or infertility care) and random allocations (such as first-come-first-served). They may also be better situated than practitioners to screen the many medical specialties in search of the most wasteful practices and to impose a relatively uniform threshold of cost-effectiveness across diverse areas of practice. In the long term, the respective strength of payors and providers could be combined. Clinicians could be given discretion to individualize within parameters set by pubic policy, government agencies, and organizations with access to defensible comparative data and public input.
313. As a general normative matter, physician rationing raises fundamental questions about the nature of the physician-patient relationship and the extent to which it can or should survive the "dual agency" that arises when physicians act as rationers. See, e.g., Marcia Angell, The Doctor as Double Agent, 3 KENNEDY INST. ETHICS J. 279 (1993); Paul T. Menzel, Double Agency and the Ethics of Rationing Health Care: A Response to Marcia Angell, 3 KENNEDY INST. ETHICS J. 287 (1993). See also COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, AM. MED. ASS'N, Ethical Issues in Managed Care, 273 JAMA 330, 332, 334 (1995) (rejecting bedside rationing, but then fudging by limiting the objection to cost-benefit judgments that "go beyond" those made "as part of their normal professional responsibilities"); Hall, supra note 4. The conflict is especially acute when physicians are given financial incentives to contain costs by reducing utilization. See MARC A. RODWIN, MEDICINE, MONEY AND MORALS: PHYSICIANS' CONFLICTS OF INTEREST (1993); Hall, supra note 4, at 758-76. Yet, clinicians can individualize their allocation decision to the circumstances of individual patients far better than insurers can. As a result, they will have to play an important role in the rational allocation of health resources. See, e.g., Susan D. Goold & Howard Brody, Rationing Decisions in Managed Care Settings: An Ethical Analysis, in HEALTH CARE CRISIS? THE SEARCH FOR ANSWERS 135, 139 (Robert I. Misbin et al. eds., 1995); Hall, supra note 4, at 701-02; Miles, supra note 16, at 313; David Orentlicher, Paying Physicians to Do Less: Financial Incentives to Limit Care, 30 U. RICH. L. REV. 155 (1996). Indeed, physicians have always played a stewardship role to some extent. They routinely make unarticulated cost-benefit decisions when making determinations such as whether to order diagnostic tests, preventive screenings, referral to specialists, or hospitalization. If every treatment of conceivable benefit were ordered, as Mark Hall notes, we would all have whole body MRI scans regularly. Hall, supra note 4, at 723. Tort law recognizes this stewardship role by delegating determination of the standard of care to medical custom. KEETON ET AL., supra note 206, § 32, at 189 & nn.51-57. In fact, a few states have recently enacted legislation explicitly protecting physicians from liability for withholding "ethically inappropriate" or "medically ineffective" care. See supra note 215. On the other hand, there is much less reason to believe that an unstated consensus in favor of physician rationing in general supports physician decisions about a minimally adequate quality of life in particular. Ultimately, a marriage between payers and providers may yield the most ideal rationing process. Insurers and government assistance plans not only have a better sense of current budget constraints than clinicians, but they may also be better positioned to consider customer or taxpayer preferences about the role that bedside rationing should play vis-à-vis other methods of controlling costs, including categorical exclusions of some kinds of coverage (such as dental, mental, or infertility care) and random allocations (such as first-come-first-served). They may also be better situated than practitioners to screen the many medical specialties in search of the most wasteful practices and to impose a relatively uniform threshold of cost-effectiveness across diverse areas of practice. In the long term, the respective strength of payors and providers could be combined. Clinicians could be given discretion to individualize within parameters set by pubic policy, government agencies, and organizations with access to defensible comparative data and public input.
314. As a general normative matter, physician rationing raises fundamental questions about the nature of the physician-patient relationship and the extent to which it can or should survive the "dual agency" that arises when physicians act as rationers. See, e.g., Marcia Angell, The Doctor as Double Agent, 3 KENNEDY INST. ETHICS J. 279 (1993); Paul T. Menzel, Double Agency and the Ethics of Rationing Health Care: A Response to Marcia Angell, 3 KENNEDY INST. ETHICS J. 287 (1993). See also COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS, AM. MED. ASS'N, Ethical Issues in Managed Care, 273 JAMA 330, 332, 334 (1995) (rejecting bedside rationing, but then fudging by limiting the objection to cost-benefit judgments that "go beyond" those made "as part of their normal professional responsibilities"); Hall, supra note 4. The conflict is especially acute when physicians are given financial incentives to contain costs by reducing utilization. See MARC A. RODWIN, MEDICINE, MONEY AND MORALS: PHYSICIANS' CONFLICTS OF INTEREST (1993); Hall, supra note 4, at 758-76. Yet, clinicians can individualize their allocation decision to the circumstances of individual patients far better than insurers can. As a result, they will have to play an important role in the rational allocation of health resources. See, e.g., Susan D. Goold & Howard Brody, Rationing Decisions in Managed Care Settings: An Ethical Analysis, in HEALTH CARE CRISIS? THE SEARCH FOR ANSWERS 135, 139 (Robert I. Misbin et al. eds., 1995); Hall, supra note 4, at 701-02; Miles, supra note 16, at 313; David Orentlicher, Paying Physicians to Do Less: Financial Incentives to Limit Care, 30 U. RICH. L. REV. 155 (1996). Indeed, physicians have always played a stewardship role to some extent. They routinely make unarticulated cost-benefit decisions when making determinations such as whether to order diagnostic tests, preventive screenings, referral to specialists, or hospitalization. If every treatment of conceivable benefit were ordered, as Mark Hall notes, we would all have whole body MRI scans regularly. Hall, supra note 4, at 723. Tort law recognizes this stewardship role by delegating determination of the standard of care to medical custom. KEETON ET AL., supra note 206, § 32, at 189 & nn.51-57. In fact, a few states have recently enacted legislation explicitly protecting physicians from liability for withholding "ethically inappropriate" or "medically ineffective" care. See supra note 215. On the other hand, there is much less reason to believe that an unstated consensus in favor of physician rationing in general supports physician decisions about a minimally adequate quality of life in particular. Ultimately, a marriage between payers and providers may yield the most ideal rationing process. Insurers and government assistance plans not only have a better sense of current budget constraints than clinicians, but they may also be better positioned to consider customer or taxpayer preferences about the role that bedside rationing should play vis-à-vis other methods of controlling costs, including categorical exclusions of some kinds of coverage (such as dental, mental, or infertility care) and random allocations (such as first-come-first-served). They may also be better situated than practitioners to screen the many medical specialties in search of the most wasteful practices and to impose a relatively uniform threshold of cost-effectiveness across diverse areas of practice. In the long term, the respective strength of payors and providers could be combined. Clinicians could be given discretion to individualize within parameters set by pubic policy, government agencies, and organizations with access to defensible comparative data and public input.
315. For a discussion of the limits that the disability rights law impose on health benefits plans, see Crossley, supra note 8, Orentlicher, supra note 50, and Peters, supra note 106.
316. See Crossley, supra note 8, at 245-48 (noting that the captivated provider has a stronger case for arguing that a futility policy is necessary). As a stakeholder, providers would also have a plausible claim to qualify for the statutory provision which explicitly authorizes consideration of underwriting risks. 42 U.S.C § 12201(c)(2) (1994).
317. See supra text accompanying notes 22-25, 94-102.
318. Accord Crossley, supra note 8, at 245. Although there is neither legislative history nor caselaw applying this requirement to the identity of the rationer, it seems reasonable to postulate that a physician seeking to meet that burden will have to demonstrate not merely that rationing would advance a broad societal interest in maximizing the impact of health dollars, but further that bedside rationing by physicians of ineffective care is essential either to their role as treating physicians or to some other specific health care program of which they are an integral part. This issue can also be couched as a failure to make reasonable modifications because elimination of disability-based decisions to ration under these circumstances arguably would not require a "fundamental" alteration of medical practice. See Southeastern Community College v. Davis, 442 U.S. 397, 407-14 (1979) (interpreting Section 504); see also 42 U.S.C. § 12131(2) (1994) (public services must make "reasonable modifications to rules, policies or practices"); 42 U.S.C. § 12182(b)(2)(A)(ii) (1994) (public accommodations must make reasonable modifications unless doing so would "fundamentally alter the nature of such services"); 28 C.F.R. § 35.130(b)(7) (1994) (excluding from the reasonable accommodation requirement changes that would "fundamentally alter the nature of the service").
319. See supra text accompanying notes 184-86.
320. See Miles, supra note 22, at 512-19.
321. Ross, supra note 249, at 2, 3.
322. Crossley, supra note 8, at 246 n.285 (stating that inconsistent application of effectiveness criteria may indicate bias).