Order at the end of life: Establishing a clear and fair mechanism for the resolution of futility disputes

Vanderbilt Law Review

Volumn 63, Issue 2, 2010, Pages 491-540

  Bassel, A ^a  

^a VANDERBILT UNIVERSITY   (United States)

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EID: 78650634159     PISSN: 00422533     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (361)

1. Betancourt v. Trinitas Reg'l Med. Hosp., No. C-12-09, slip op. at 1 (N.J. Super. Ct. Mar. 4, 2009), available at http://thaddeuspope.com/images/ Betancourt-v-trinitas-3-4-2-.pdf
2. see also National Cancer Institute, Thymoma and Thymic Carcinoma, http://www.cancer.gov/cancertopics/types/thymoma (last visited Jan. 22, 2010) (defining thymoma).
3. Betancourt, slip op. at 1.
4. Id. at 1-2.
5. Id.
6. Id. at 2.
7. Id.
8. Id. at 2-3.
9. Id. at 3.
10. Id.
11. See ALAN MEISEL & KATHY L. CERMINARA, THE RIGHT TO DIE: THE LAW OF END-OF-LIFE DECISIONMAKING §13.01[A]-[B] (3d. ed. 2004) (in a futility case, "the physician recommends to the patient, or more likely to the surrogate of an incompetent patient, that treatment be withheld or withdrawn because the physician has concluded that further treatment is futile").
12. Id. §13.01.
13. CLARK C. HAVIGHURST, JAMES F. BLUMSTEIN & TOYEN A. BRENNAN, HEALTHCARE LAW AND POLICY 1103 (2d ed. 1998)
14. MEISEL & CERMINARA, supra note 10, §2.06.
15. MEISEL & CERMINARA, supra note 10, §13.01.
16. Id.
17. See AM. MED. ASS'N, COUNCIL ON ETHICAL & JUDICIAL AFFAIRS, CODE OF MEDICAL ETHICS §2.20 (2008), available at http://www.ama-assn.org/ama/pub/ physicianresources/medical-ethics/code-medical-ethics.shtml ("Physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care. This includes providing effective palliative treatment even though it may foreseeably hasten death.")
18. Sandra H. Johnson, The Social, Professional, and Legal Framework for the Problem of Pain Management in Emergency Medicine, 33 J.L. MED. & ETHICS 741, 748 (2005) ("Physicians have a well established legal duty to treat pain as a part of their medical treatment of a patient. The doctor's legal duty to relieve pain is generally supported by policy statements and standards of professional organizations and by the standards enforced by state licensing boards.").
19. See Barry R. Furrow, Pain Management and Provider Liability: No More Excuses, 29 J.L. MED. & ETHICS 28, 29 (2001) ("Failure to properly manage pain-to assess, treat, and manage it-is professional negligence")
20. Bergman v. Chin, No. H205732-1 (Cal. Super. Ct. June 13, 2001), as discussed in Gilah R. Mayer, Bergman v. Chin: Why an Elder Abuse Case is a Stride in the Direction of Civil Culpability for Physicians Who Undertreat Patients Suffering from Terminal Pain, 37 NEW ENG. L. REV. 313, 327-30, 341 (2003) (finding that failure to treat the pain of terminally ill patient dying of lung cancer constituted elder abuse and awarding damages).
21. WHO, WHO Definition of Palliative Care, http://www.who.int/cancer/ palliative/ definition/en/ (last visited Jan. 22, 2010).
22. See, e.g., CONN. GEN. STAT. §19a-573(a) (2008) (notwithstanding provisions providing for withdrawal of life-sustaining treatment, "comfort care and pain alleviation shall be provided in all cases")
23. MINN. STAT. §145B.13(1) (2009) ("[A] decision to administer, withhold, or withdraw medical treatment after the patient has been diagnosed by the attending physician to be in a terminal condition must always be based on reasonable medical practice, including . . . continuation of appropriate care to maintain the patient's comfort, hygiene, and human dignity and to alleviate pain.").
24. Thaddeus Mason Pope, Medical Futility Statutes: No Safe Harbor to Unilaterally Refuse Life-Sustaining Treatment, 75 TENN. L. REV. 1, 20 (2007).
25. For a recent real life example of a futility dispute, consider the case of Emilio Gonzales. Emilio was born with Leigh disease, a rare inherited neurometabolic disorder characterized by rapid degeneration of the central nervous system. Due to this disease, Emilio was deaf, blind, and ventilator dependent. His healthcare provider claimed that further life-sustaining treatment would be futile, but his mother insisted on continued treatment. Although Ms. Gonzalez acknowledged that her son was terminally ill, she nevertheless wanted him to receive a tracheotomy, a gastrostomy tube, and a bed in a long-term care facility. She urged, "I just want to spend time with my son ...[;] I want to let him die naturally without someone coming up and saying we're going to cut off on a certain day." The disagreement between Emilio's mother (the Surrogate) and the healthcare institution represents a medical futility dispute. Jeffrey P. Burns & Robert D. Truog, Futility: A Concept in Evolution, 132 CHEST 1987, 1990 (2007).
26. See Elena N. Cohen, Refusing & Forgoing Treatment, in 3 TREATISE ON HEALTHCARE LAW §18.06 (Alexander M. Capron & Irwin M. Birnbaum eds., Matthew Bender rev. ed. 2008) (discussing judicial and non-judicial mechanisms for resolving futility disputes and explaining that non-judicial dispute resolution may be desirable because court proceedings can be timeconsuming and emotionally and financially costly for both patients and providers citing several decisions that support this conclusion).
27. See infra notes 94-105 and accompanying text.
28. Betancourt v. Trinitas Reg'l Med. Hosp., No. C-12-09, slip op. at 3-4, 7 (N.J. Super. Ct. Mar. 4, 2009) ("The decision to continue or terminate life support systems is not left to the courts.").
29. Id.
30. Id. The physicians further stated that the patient "does not respond to pain or spontaneously move his extremities." Id.
31. Id. at 7-8. The hospital appealed the decision, and even though the patient died (while on the ventilator), the appeal appears to still be going forward. Rebecca Dube, 'Death Panels' Obscure Real End-of-Life Challenges, JEWISH DAILY FORWARD, Oct. 9, 2009, available at http://www.forward.com/ articles/115597/.
32. Ellen Fox et al, Ethics Consultation in United States Hospitals: A National Survey, AM. J. BIOETHICS, Feb. 2007, at 13, 23 (finding that 81 percent of general hospitals and 100 percent of hospitals with 400 beds or more provide ethics consultations services)
33. see also Cohen, supra note 21, §18.06 ("To avoid some of the negative aspects of judicial intervention, institutional dispute resolution mechanisms have been created .... One mechanism for resolving disputes that deserves special attention is the institutional ethics committee."). Although ethics committees are the most common forum for addressing ethical issues, ethics consultations may utilize an individual ethicist rather than a committee.
34. Fox et al., supra note 27, at 23.
35. See Alexander M. Capron, Legal Perspectives on Institutional Ethics Committees, 11 J.C. & U.L. 417, 427 (1985) (noting that "[p]eople frequently assert that an ethics committee should be 'advisory,' " but that "[t]o call it a committee suggests that the group will come to some kind of closure on the issues that it addresses").
36. See Dianne E. Hoffmann, Does Legislating Hospital Ethics Committees Make a Difference? A Study of Hospital Ethics Committees in Maryland, the District of Columbia, and Virginia, 19 LAW MED. & HEALTHCARE 105, 108 (1991) [hereinafter Hoffmann, Does Legislating Hospital Ethics Committees Make Sense?] (describing the typical composition of ethics committees in Maryland, the District of Columbia, and Virginia)
37. cf. Diane E. Hoffmann, Regulating Ethics Committees in Healthcare Institutions - Is It Time?, 50 MD. L. REV. 746, 763-68, 782 (1991) [hereinafter Hoffman, Regulating Ethics Committees] (examining the relative institutional predispositions of ethics committees to reasoned decisionmaking and noting that "[a] committee that is heavily dominated by medical professionals may not share the same values as the patients that come before it").
38. See Thaddeus Mason Pope, Multi-Institutional Healthcare Ethics Committees: The Procedurally Fair Internal Dispute Resolution Mechanism, 31 CAMPBELL L. REV. 257, 275-84 (2009) (discussing institutional ethics committees conflicts of interest and concluding that "[s]ince, in many treatment disputes, the interest of the institution may not align with that of the patient, [institutional ethics committees] cannot act as sufficiently impartial, independent decision makers").
39. See infra Part II.
40. See, e.g., Bethany Spielman, Has Faith in Healthcare Ethics Consultants Gone Too Far? Risks of an Unregulated Practice and a Model Act to Contain Them, 85 MARQ. L. REV. 161, 180 (2001) ("[T]he field of ethics consultation remains free of any internal or external regulation. There is no self-regulation, no registry, no certification, no licensure, and no accreditation of training programs."). Maryland is the one exception, which regulates only the composition and some procedures of the committees. MD. CODE. ANN., HEALTH-GEN. §§19-370 to -374.
41. See Causey v. St. Francis Med. Ctr., 719 So. 2d 1072, 1075 (La. Ct. App. 1998) (holding that a physician would not be compelled to "provide interventions that in his view would be harmful, without effect or 'medically inappropriate' "); In re Jobes, 529 A.2d 434, 436 (N.J. 1987) (noting that "the patients' right to self-determination is the guiding principle" in cases regarding the withdrawal of life-sustaining treatment).
42. Cf. Susan M. Wolf, Ethics Committees and Due Process: Nesting Rights in a Community of Caring, 50 MD. L. REV. 798, 844-47 (1991) (discussing the gaps in procedural protections for patients in the Maryland statutory scheme spelling out ethics committee process).
43. See Mark P. Aulisio et al., Healthcare Ethics Consultation: Nature, Goals, and Competencies, 133 ANNALS INTERNAL MED. 59, 65 (2000) (summarizing the American Society for Bioethics and Humanities Task Force's report on the core competencies for healthcare ethics consultation, which includes the conclusion that "Conflicts of Interest Must Be Avoided[.] ... If ethics consultants have important personal or professional relationships with one or more parties that could lead to bias ... the consultants should ... remove themselves from the case.").
44. IOWA CODE §§135.28-29 (2009).
45. See id. §135.29(2) (providing that "the local [SDMB] may act as a substitute decision maker for patients incapable of making their own medical care decisions if no other substitute decision maker is available to act")
46. IOWA ADMIN. CODE r. 641-85 (2009).
47. See IOWA ADMIN. CODE r. 641-85.6(1) ("A person shall not participate on a panel for a case when that person has a conflict of interest.")
48. id. at r. 641-85.2(1) (defining "conflict of interest" as "a standard which precludes the participation of a panel member in the proceedings with regard to a patient whenever the panel member is a relative of the patient, is a direct care provider of the patient or has a financial interest in the patient").
49. See id. at r. 641-85.3 to .6, 641-85.8 to .12.
50. Id. at r. 641-85.1.
51. The terms "competence" and "capacity" are often used interchangeably in discussions of medical decisionmaking, leading to confusion over the exact meaning of these terms. Traditionally, the term "incompetent" has been used to describe a judicial determination that an individual lacks the degree of "capacity" legally required to do a particular task. However, many state statutes require that physicians make a capacity determination in the clinical setting, and this determination results in the person being treated as if they had been adjudicated "incompetent. " Instead of dwelling on the technical distinctions between these terms, this Note will use the word "incompetent" to refer to an individual who lacks decisionmaking capacity to make a treatment decision, whether this determination is made in a judicial or clinical setting.
52. See MEISEL & CERMINARA, supra note 10, §3.05 (citing the more widespread usage of "competence" and "incompetence" due to their simplicity as well as the potential for confusing "capacity" with a patient's health status). For example, a patient may be physically incapacitated but still possess decision making capacity.
53. Id.
54. see, e.g., Lane v. Candura, 376 N.E.2d 1232,1233 (Mass. App. Ct. 1978) (noting that the trial court decision did not include a clear-cut decision that the patient lacked the requisite legal competence). This omission may occur because in many end-of-life cases, the patient's incompetence is undisputable (e.g. the patient is comatose or in a vegetative state). MEISEL & CERMINARA, supra note 10, §3.06.
55. Cohen, supra note 21, §18.02. For decisions using this standard or a close variation, see In re Martin, 504 N.W.2d 917, 924 (Mich. Ct. App. 1993), In re Hier, 464 N.E.2d 959, 965 (Mass. App. Ct. 1984), and State Dep't of Human Res. v. Northern, 563 S.W.2d 197, 209 (Tenn. Ct. App. 1978).
56. TENN. CODE ANN. §68-11-1812(b) (2009)
57. Saunders v. State, 492 N.Y.S.2d 510, 516 (N.Y. Sup. Ct. 1985) ("Competency is presumed as the normal condition of a person until the contrary is shown."); In re K.K.B., 609 P.2d 747 (Okla. 1980) (competency presumed even for psychiatric patients).
58. Cohen, supra note 21, §18.04[1].
59. CAROL KROHM & SCOTT SUMMERS, ADVANCE HEALTHCARE DIRECTIVES xix (4th ed. 2002).
60. Id.
61. Id.
62. Id.
63. Rebecca Dresser, Precommitment: A Misguided Strategy for Securing Death with Dignity, 81 TEX. L. REV. 1823, 1828-29 (2003).
64. 42 U.S.C. §§1395cc(a)(1)(Q), (f) (2008).
65. Dresser, supra note 51, at 1828-29.
66. See Dallas M. High, Advance Directives and the Elderly, 33 GERONTOLOGIST 342, 342-48 (1993) (finding that between 0 to 20 percent of elders had completed an advance directive)
67. Joan M. Teno et al., Do Advance Directives Provide Instructions that Direct Care?, 45 J. AM. GERIATRICS SOCY 508, 509 (1997) (citing a comprehensive study of 4,804 hospitalized, seriously ill patients during the two years after the PSDA was enacted, which revealed that only 14 percent of the patients had an advance directive in their medical record).
68. Victor G. Cicirelli, Healthy Elders' Early Decisions for End-of-Life Living and Dying, in 20 ANN. REV. GERONTOLOGY & GERIATRICS 163, 181 (2000).
69. S. 1263, 111th Cong. (2009).
70. H.R. 1898, 111th Cong. (2009).
71. S. 1150, 111th Cong. (2009).
72. See KENNETH A. FISHER, IN DEFIANCE OF DEATH: EXPOSING THE REAL COSTS OF END-OPLIFE CARE 13 (2008) (explaining that the concept of advance directives is inherently problematic because it presupposes more control over future treatment than is realistic).
73. Id. (quoting Dr. Henry S. Perkins).
74. Diane E. Hoffmann, Mediating Life and Death Decisions, 36 ARIZ. L. REV. 821, 831 (1994).
75. CLAIRE C. OBADE, PATIENT CARE DECISIONMAKING: A LEGAL GUIDE FOR PROVIDERS § 11.3 (current through Dec. 2008). These are also referred to as family decisionmaking laws. Id. See also KROHM & SUMMERS, supra note 47, at 136 (stating that a majority of states have enacted surrogacy statutes).
76. OBADE, supra note 62, §11.3.
77. KROHM & SUMMERS, supra note 47, at 136. For example, the Uniform Healthcare Decisions Act (discussed infra Part I.B.1) provides that consideration may be given, in order of descending preference to the patient's (1) spouse, unless legally separated; (2) adult child; (3) parent; or (4) adult sibling. If none of these individuals are reasonably available, an "adult who has exhibited special care and concern for the patient, who is familiar with the patient's personal value" may act as surrogate. UNIF. HEALTHCARE DECISIONS ACT §5(b)-(c), 9 U.L.A. 93 (1993)
78. , reprinted in 22 ISSUES L. &MED. 83 (2006) [hereinafter "UHCDA"].
79. In general, judicial proceedings are not required to determine incompetence and to appoint a surrogate. MEISEL & CERMINARA, supra note 10, §3.16. If a patient is judicially determined to be incompetent to make medical decisions, the court appoints a guardian who is empowered to make decisions about the patient's medical care. Id. §3.10. Alternatively, if a patient is clinically determined to lack decisionmaking capacity, the designation of a surrogate usually occurs in the clinical setting without recourse to judicial proceedings. Id.
80. Matthew Bierlein, Seeing the Face of the Patient: Considerations in Applying Bioethics Mediation to Non-Competent End-of-Life Decisionmaking, 23 OHIO ST. J. ON DISP. RESOL. 61, 66 (2007).
81. Id.
82. UHCDA, supra note 64, at prefatory note ¶¶ 1-2.
83. MEISEL & CERMINARA, supra note 10, §7.04[A]. Two other states have modeled legislation after this.
84. See Pope, supra note 19, at 53 n.294 (noting that the legislative history of California and Tennessee statutes confirms that the statutes were largely derived from the UHCDA) (citing Healthcare Decisions for Adults Without Decisionmaking Capacity, Bill Analysis of A.B. 891 Before the Assem. Comm. on the Judiciary, 106th Cong., at 5 (Apr. 15, 1999) (noting that the bill is "[d]rawing heavily on the [UHCDA]"); Healthcare Decisions: Durable Power of Attorney, Bill Analysis of A.B. 891 Before the S. Comm. on the Judiciary, 106th Cong., at 2 (July 13, 1999) ("The provisions of the proposed Healthcare Decisions Law (HCDL) are drawn heavily from the Uniform Healthcare Decisions Act (1993), and implement major parts of the Commission's recommendation[s].")
85. Charles M. Key & Gary D. Miller, The Tennessee Healthcare Decisions Act A Major Advance in the Law of Critical Care Decision Making, 40 TENN. B.J. 25, 28 (2004).
86. UHCDA, supra note 64, at prefatory note ¶ 4.
87. Id. §7(f).
88. Id. §§7(g), 9(a).
89. Id. §7(g).
90. Id.
91. Id.
92. See Pope, supra note 19, at 53 (labeling statutes that include similar provisions as "Unilateral Decision Statutes" that permit healthcare providers to unilaterally refuse to provide life-sustaining treatment that they consider to be medically inappropriate).
93. UHCDA, supra note 64, §(1)(8).
94. Id. §(1)(7).
95. Id. §7(g)(3).
96. Id. §7(g)(2). It should also be noted that the Act fails to provide the meaning of "continuing care." See id. §1 (providing a list of definitions applicable to the Act, but omitting "continuing care"). Therefore, it is unclear whether it requires institutions to provide only palliative care or instead more generally requires continued medical care, including lifesustaining treatment, until a patient is transferred. California has addressed this problem by providing that the obligation of the declining facility to provide continuing care does not mean unlimited compliance with the patient request but only that the facility continue pain relief and other palliative care. See CAL. PROB. CODE §§4735-36 (West 2009) (providing that a healthcare provider or institution may decline to comply with an individual healthcare instruction when the requested care would be ineffective, but that"[i]n all cases, appropriate pain relief and other palliative care shall be continued").
97. Compare UHCDA, supra note 64, §7(g)(3), with id. §7(g)(2).
98. The one state statute that does provide a specific extrajudicial process and definite timetable for terminating a patient's life-sustaining treatment is the Texas Advance Directives Act. See Cynthia S. Marietta, The Debate Over the Fate of the Texas "Futile-Care" Law, HEALTH L. PERSP., Apr. 25, 2007, at 1, available at www.law.uh.edu/healthlaw/perspectives /2007/(CM)TXFutileCare. pdf. The Act authorizes a physician to refuse to honor a surrogate's decision to continue life-sustaining treatment if the physician believes the continued treatment would be medically hopeless or futile. TEX. HEALTH & SAFETY CODE ANN. §166.046 (Vernon Supp. 2009). However, a hospital ethics committee must first review this decision. Id. § 106.046(a). If the committee agrees with the physician and determines that the case is futile, the patient's family then has ten days to transfer the patient to a facility willing to continue the treatment. Id. §§166.046 (d)-(e). During the ten day waiting period, treatment is continued but the hospital has no obligation to continue treatment after ten days. Id. The patient's family or surrogate may seek court intervention to extend the waiting period; however, a court must find by a preponderance of the evidence that there is a reasonable expectation that another facility will honor the surrogate's decision in order to grant the extension. Id. §166.046(g). 82. By synthesizing two sections of the UHCDA, it may be possible to argue that the Act grants immunity to a healthcare provider or institution that, in good faith and in accordance with generally accepted healthcare standards, relies on a healthcare provider's decision to forgo "medically ineffective" treatment. Section 9(a)(1) provides that "[a] healthcare provider or institution acting in good faith and in accordance with generally accepted healthcare standards applicable to the healthcare provider or institution is not subject to civil or criminal liability or to discipline for unprofessional conduct for . . . complying with a healthcare decision of a person apparently having authority to make a healthcare decision for a patient, including a decision to withhold or withdraw healthcare." UHCDA, supra note 64, §9(a)(1). The healthcare decision upon which a healthcare provider may rely may be the provider's authority to decline to comply with an individual instruction requiring "medically ineffective healthcare," which is authorized by §7(f). Id. §7(f). However, this interpretation is a stretch and is certainly not clear from the statute.
99. Id. §9.
100. See David M. English, The Uniform Health-Care Decisions Act and Its Progress in the States, 15 PROB. & PROP., May/June 2001, at 19, 23 available at http://www.abanet.org/rppt/ publications/magazine/2001/01mj/01mjenglish.html (highlighting this omission). California, Delaware and New Mexico have tried to fix this gap in the immunities section of the UHCDA by providing protection from liability to a provider or institution declining to provide care as authorized by the Act. Id.
101. See infra Part II.A. 3.
102. Lynette Cederquist, Model Policy on Non-Beneficial Treatment, SAN DIEGO PHYSICIAN, July 2009, at 22, 23.
103. Id.
104. See CAL. PROB. CODE §§4600-4805 (West 2009) ("Many provisions in Parts 1, 2, and 3 are the same as or drawn from the Uniform Healthcare Decisions Act (1993).").
105. Variations of this standard include provisions that authorize providers to refuse to comply with requests not considered to be "reasonable medical practice," e.g., MINN. STAT. ANN. § 145B.13 (West 2005), or "within the bounds of responsible medical practice," N.H. REV. STAT. ANN. §137-J:7(I) (Supp. 2009).
106. Pope, supra note 19, at 64-65.
107. N.Y. PUB. HEALTH LAW §2966(1) (McKinney 2007 & Supp. 2009). For examples of similarly limited statutes, see VT. STAT. ANN tit. 18, §9708(a) (Supp. 2009)
108. W. VA. CODE ANN § 16-30C-6(e) (LexisNexis 2006).
109. E.g., OR. REV. STAT. §127.580 (2007);
110. U TAH CODE ANN. §75-2-1107(1) (1993) (repealed 2007) (current version at UTAH CODE ANN. §75-2a-115 (Supp. 2009)) .
111. MEISEL & CERMINARA, supra note 10, §13.01.
112. Cohen, supra note 21, §18.06.
113. Hoffmann, supra note 61, at 840.
114. See, e.g., Thomas L. Hafemeister & Donna M. Robinson, The Views of the Judiciary Regarding Life-Sustaining Medical Treatment Decisions, 18 LAW & PSYCHOL. REV. 189, 191, 212-21 (1994) (presenting the results of a survey in which judges described particular difficulty in reconciling conflicting second-hand information about past patient preference, family wishes, and disputed medical evidence particularly in light of uncertain decisional standards)
115. see also J. DONALD SMITH, RIGHT-TO-DIE POLICIES IN THE AMERICAN STATES 169 (2002) (explaining that the Massachusetts Supreme Judicial Court has applied a case-by-case approach in treatment refusal cases by limiting its holdings to the specific facts, thus providing healthcare professionals with very little guidance).
116. Hoffmann, supra note 61, at 840 n.81 ("At the trial court level, judges seem to have had particular difficulty in (1) evaluating prior statements of the patient; (2) evaluating the testimony of witnesses reporting prior statements of the patient; (3) deciding what weight to give the opinions of family and friends of the patient; and (4) determining whether the patient's expressed choice had been altered by time or intervening events.").
117. Cohen, supra note 21, §18.04[2][a]. While many courts require "clear and convincing evidence" that the requested treatment constitutes the "substituted judgment" of the patient, the relationship between the substituted judgment standard and the evidentiary burden of proof is also unclear in many cases. Id.
118. Id. §18.06 ("[S]ome courts, while recognizing their responsibility to protect individual rights, have noted that treatment refusal decisions are more appropriately made either in the physician/patient/family context or through legislature.").
119. See, e.g., Rasmussen v. Fleming, 741 P.2d 674, 678-79 (Ariz. 1987) ("We approach this case . . . with extreme caution and humility, mindful of the profound and overwhelming sense of responsibility that accompanies the power to resolve what . . . are all too often life-and-death issues....")
120. Wendland v. Superior Court, 56 Cal. Rptr. 2d 595, 601 (Cal. Ct. App. 1996) (Raye, J., concurring) ("I write separately to emphasize the complexity of the life and death issues underlying this litigation."); In re Guardianship of Browning, 568 So. 2d 4, 15 (Fla. 1990) ("We are loath to impose a cumbersome legal proceeding at such a delicate time in those many cases where the patient neither needs nor desires additional protection.")
121. DeGrella v. Elston, 858 S.W.2d 698, 712 (Ky. 1993) (Wintersheimer, J., dissenting) ("It is always a struggle for the judicial system to properly resolve such weighty questions.")
122. McKay v. Bergstedt, 801 P.2d 617, 637 (Nev. 1990) (Springer, J., dissenting) ("I have agonized over this case.").
123. In re A.C., 573 A.2d 1235, 1264 n.2 (D.C. 1990).
124. Wendy K. Mariner, Decision Making in the Care of Terminally III Incompetent Persons: Concerns About the Role of the Courts, 32 J. AM. GERIATRICS SOC'Y 739, 742 (1984)
125. David M. Shelton, Keeping End-of-Life Decisions Away From Courts After Thirty Years of Failure: Bioethical Mediation as an Alternative for Resolving End-of-Life Disputes, 31 HAMLINE L. REV. 103, 110-13 (2008).
126. Schiavo ex rel. Schindler v. Schiavo, 357 F. Supp. 2d 1378 (M.D. Fla. 2005)
127. see Shelton, supra note 102, at 105 (calling the Schiavo case "[t]he most recent and well-known example of the failure of litigation in resolving end-of-life disputes").
128. Cohen, supra note 21, §18.04. In addition, this case generated legislative activity that created interesting legal issues about the role of third parties in end-of-life decisionmaking. Although the early years of the case involved only the patient's family members, the Florida legislature eventually enacted a statute authorizing the governor to order tube reinsertion. 2003 Fla. Laws ch. 418, invalidated by Bush v. Schiavo, 885 So. 2d 321 (Fla. 2004). This law was invalidated by the Florida Supreme Court, Schiavo, 885 So. 2d at 337, but then the U.S. Congress passed a law specifically permitting Schiavo's parents to sue in federal court. Judicial Relief for the Parents of Theresa M. Schiavo, Pub. L. No. 109-3,199 Stat. 15 (2005).
129. In re Quinlin, 355 A.2d 647, 671 (N.J. 1976), overruled in part on other grounds by In re Conroy, 486 A.2d 1209 (N.J. 1985). Quinlin is also significant because it was the first case to recognize that incompetent patients do not lose the right to reject treatment. Cohen, supra note 21, §18.04.
130. Quinlin, 355 A.2d at 647.
131. Id. at 667-69.
132. Id.
133. For decisions discussing the role of ethics committees, see Conservatorship of Wendland, 28 P.3d 151. 155-56 (Cal. 2001)
134. In re Doe, 418 S.E.2d 3, 4-5 (Ga. 1992)
135. In re Lawrance, 579 N.E.2d 32, 42 (Ind. 1991)
136. Woods v. Commonwealth, 142 S.W.3d 24, 49-51 (Ky. 2004)
137. In re Martin, 538 N.W.2d 399, 208-10, (Mich. 1995).
138. PRESIDENT'S COMM'N FOR THE STUDY OF ETHICAL PROBS. IN MED. & BIOMEDICAL & BEHAVIORAL RES., DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT: ETHICAL, MEDICAL, AND LEGAL ISSUES IN TREATMENT DECISIONS 154-60 (1983), available at http://www.bioethics.gov /reports/past-commissions/deciding-to- forego-tx.pdf.
139. MD. CODE. ANN. HEALTH-GEN. §19-374 (LexisNexis 2009)
140. N.J. ADMIN. CODE §8:436-5.1 (2009). Since that time, Colorado and Texas have similarly mandated the establishment of ethics committees.
141. COLO. REV. STAT. §15-18.5-103(6.5) (2008);
142. 25 TEX. ADMIN. CODE §405.60(a) (2009).
143. Sharon E. Caulfield, Healthcare Facility Ethics Committees, 34 HUM. RTS., Fall 2007, at 10, available at http://www.abanet.org/irr/hr/fall07/ caulfifall07.html.
144. Id. at 11.
145. Fox et al., supra note 27, at 23.
146. Council on Ethical and Judicial Affairs, Am. Med. Ass'n, Medical Futility in End-of-Life Care: Report of the Council on Ethical and Judicial Affairs, 281(10) J. AM. MED. ASS'N 937, 939-40 (1999). In the AMA's "process- based" approach, if a resolution cannot be reached after consultation with the ethics committee, and transfer cannot be effected, "the intervention . . . need not be provided, although the legal ramifications of this course of action are uncertain." Id.
147. See, e.g., ALA. CODE §22-8A-11(D)(7) (2006)
148. ARIZ. REV. STAT. ANN. §36-3231(B) (2009)
149. GA. CODE ANN. §31-39-2 (2009)
150. FLA. STAT. §765.404 (2005 & Supp. 2009).
151. TEX. HEALTH & SAFETY CODE ANN. §166.046 (Vernon Supp. 2009)
152. see supra note 81 and accompanying text (providing a brief summary of the Texas Advance Directives Act). 118. HAW. REV. STAT. ANN. §663-1.7(a) (LexisNexis 2007) (defining "ethics committee" as "a committee that may be an interdisciplinary committee appointed by the administrative staff of a licensed hospital, whose function is to consult, educate, review, and make decisions regarding ethical questions, including decisions on life-sustaining therapy").
153. N.J. STAT. ANN. §26:2H-53 (West 2007 & Supp. 2009).
154. Sheila A.M. McLean, Clinical Ethics Committees, Due Process and the Right to a Fair Hearing, 15 J.L. & MED. 1, 1 (2008) (finding that hospital ethics committees in the United States are "increasingly authoritative")
155. Sheila A.M. McLean, Clinical Ethics Committees: A Due Process Wasteland?, 3 CLINICAL ETHICS 100-01 (2008) (describing several court decisions that cede considerable authority to ethics committee recommendations).
156. Fox et al., supra note 27, at 21.
157. George Agich, Authority in Ethics Consultation, 23 J.L. MED. & ETHICS 273, 275 (1995) (recommendations have a "practical effect akin to power")
158. Karen Ritchie, When It's Not Optional, 18 HASTINGS CTR. REP. 25, 25 (1988) (describing some ethics committee recommendations as being mandatory in effect and explaining that committees "may, intentionally or not, place a great deal of pressure on caregivers to conform to 'optional' committee determinations")
159. Susan M. Wolf, Due Process in Ethics Committee Case Review, 4(2) H.E.C. FORUM 83, 88 (1992) (noting that "committees, even when they protest that they are merely advisory, can actually wield significant power").
160. MEISEL & CERMINARA, supra note 10, §13.01.
161. See supra notes 89-92 and accompanying text.
162. Susan Carhart, Process Approach to End-of-Life Care Fails to Eliminate Ethical, Political Issues, 11 Health L. Rep. (BNA) 1755 (Dec. 19, 2002).
163. Spielman, supra note 33, at 180.
164. See Hoffmann, Regulating Ethics Committees, supra note 30, at 847 (noting the strong concern that ethics committee decisions will exhibit "institutional protectionism" because generally the committees are "composed almost entirely of... staff').
165. Hoffman, Does Legislating Hospital Ethics Committees Make Sense?, supra note 30, at 185
166. (citing Giles R. Scofield, Ethics Consultation: The Least Dangerous Profession?, 2 CAMBRIDGE Q. HEALTHCARE ETHICS 417, 420 (1993)).
167. Furthermore, the sources of bias discussed in this Part can affect futility determinations generally, whether or not the surrogate disputes a physician's decision to withdraw treatment. In other words, the effects of ethics committee conflicts of interest extend further than futility disputes between a physician and surrogate, as they can influence a physician's actions even if not challenged by the surrogate.
168. HAVIGHURST ETAL., supra note 12, at 110.
169. Medicare Prospective Payment System, American Hospital Directory, http://www.ahd.com/pps.html (last visited Jan. 22, 2010).
170. Id.
171. John Lantos, When Parents Request Seemingly Futile Treatment for Their Children, 73 MOUNT SINAI J. MED. 587, 589 (May 2006).
172. Id.
173. Doctors Hosp., Inc. of Plantation v. Bowen, 811 F.2d 1448, 1449-50 (11th Cir. 1987). Each DRG is assigned a weight that varies with the severity of the illness. This number is then multiplied by a dollar figure that represents the national average per patient cost of medical treatment. Id.
174. Id.
175. HAVIGHURST ETAL., supra note 12, at 232.
176. Lantos, supra note 133, at 589.
177. Id.
178. 30 Pa. D. & C.4th 57 (Pa. Com. Pl. 1995)
179. see also Frank Bruni, A Fight Over Baby's Dignity and Death, N.Y. TIMES, Mar. 9, 1996, at A6 (recounting the facts of the case).
180. 30 Pa. D. & C.4th at 59.
181. Id. at 59-60.
182. Id. at 60.
183. Id.
184. Id. at 60-63.
185. Id. at 62-63.
186. Id. at 69 ("[T]he hospital's decision to remove the ventilator support may have been a 'reasoned medical decision.' ").
187. Id. at 95-96.
188. Id. at 61.
189. See supra note 98.
190. Id.
191. HAVIGHURST ETAL., supra note 12, at 227.
192. Id. at 226.
193. Id. at 113.
194. 42 U.S.C. §1396a(30)(A) (2006) (requiring states to "assure that payments are consistent with efficiency, economy, and quality of care and are sufficient to enlist enough providers so that care and services are available under the plan at least to the extent that such care and services are available to the general population in the geographic area").
195. HAVIGHURST ETAL., supra note 12, at 115.
196. Id.
197. Id.
198. Carolyn Cartier, From Home to Hospital and Back Again: Economic Restructuring, End of Life, and the Gendered Problems of Place-Switching Health Services, 56 SOC. SCI. & MED. 2289, 2293 (2003).
199. See Robert Kaplan & Diane Schneider, Medical Decision Making Toward the End of Life: Ethical, Economic, and Health Policy Implications, 20 ANN. REV. GERONTOLOGY & GERIATRICS 39, 576 (2000).
200. HAVIGHURST ETAL., supra note 12, at 232.
201. Id.
202. Id.
203. Cartier, supra note 159, at 2290.
204. Miriam Moss, End of Life in Nursing Homes, 20 ANN. REV. GERONTOLOGY & GERIATRICS 224, 226-27 (2000)
205. (quoting Jeanie S. Kayser-Jones et al., Factors in Contributing to the Hospitalization of Nursing Home Residents, 29 GERONTOLOGIST 502, 509 (1989)).
206. See HAVIGHURST ETAL., supra note 12, at 232 ("[T]he government set up a monitoring system to investigate transfers to ensure that PPS was not being exploited.").
207. E.g., Robert M. Kliegman et al., In Our Best Interests: Experience and Workings of an Ethics Review Committee, 108 J. PEDIATRICS 178, 186 (1986) ("[T]he goal is to promote the best interests of patients.")
208. Judith Randal, Are Ethics Committees Alive and Well?, HASTINGS CTR. REP., Dec. 1983, at 10, 12 (characterizing the role of ethics committees as that of patient advocate).
209. George J. Annas, Ethics Committees in Neonatal Care: Substantive Protection or Procedural Diversion?, 74 AM. J. PUB. HEALTH 843, 843-44 (1984) ("Institutions and their staffs often see the primary function of ethics committees as protecting them against potential legal liability for treating or not treating particular patients.").
210. Doe v. Bolton, 410 U.S. 179, 197 (1973).
211. JUDITH WILSON ROSS ET AL., HANDBOOK FOR HOSPITAL ETHICS COMMITTEES 39 (1986);
212. John A. Robertson, Committees as Decision Makers: Alternative Structures and Responsibilities, in INSTITUTIONAL ETHICS COMMITTEES AND HEALTHCARE DECISION MAKING 85, 88-89 (Ronald E. Cranford & A. Edward Doudera eds., 1984) (noting the potential use of an ethics committee as an "ethical risk management team").
213. HARRIS INTERACTIVE, FEAR OF LITIGATION: THE IMPACT ON MEDICINE 9 (2002), available at http://commongood.org/attachments/57/Fear+of+Lit+Exec+Rep.pdf (showing that over half of the respondents stated that they have noticed a physician resorting to aggressive treatments of terminally ill patients because of liability concerns).
214. ROSS, supra note 170, at 390 n.194 (citing 1992 survey conducted with the assistance of the American Hospital Association that found that 96.2 percent of all ethics committees contain at least one administrator and explaining: "The concern that the ethics committee will act as a risk management team is heightened by the inclusion on nearly all committees of hospital administrators and in-house counsel, both of whom have probable conflicts of interest.").
215. Thaddeus M. Pope & Ellen A. Waldman, Mediation at the End of Life: Getting Beyond the Limits of the Talking Cure, 23 OHIO ST. J. ON DISP. RESOL. 143, 169 (2007).
216. Id.
217. Id. at 184-85.
218. Cynthia B. Cohen, The Social Transformation of Some American Ethics Committees, HASTINGS CTR. REP., Sept.-Oct. 1989, at 21.
219. Kevin B. O'Reilly, Delegates Weigh Ethics Committee's Role, AM. MED. NEWS, Dec. 1, 2008, at 17, available at http://www.ama-assn.org/amednews/2008/ images/prhdl201.pdf.
220. Robert F. Weir, Pediatric Ethics Committees: Ethical Advisers or Legal Watchdogs?, 15 LAW MED & HEALTHCARE 99, 106 (1987).
221. ALA. CODE §22-8A-11 (2006)
222. ARIZ. REV. STAT. ANN. §36-3231 (2009)
223. FLA. STAT. ANN. § 765.404 (West 2005)
224. GA. CODE ANN. §§31-39-4, 31-39-7 (2009)
225. HAW. REV. STAT. ANN. §663-1.7 (LexisNexis 2007)
226. MD. CODE ANN. HEALTH-GEN. §19-374 (West 2009)
227. MONT. CODE ANN. §37-2201 (2009)
228. TEX. HEALTH & SAFETY CODE ANN. §§166.039, 166.044 (Vernon 2001 & Supp. 2009).
229. See, e.g., Arthur E. Kopelman, Understanding, Avoiding, and Resolving End-of-Life Conflicts in the NICU, 73 MOUNT SINAI J. MED. 580, 582 (2006) (reproducing a surrogate decisionmaker's explanation that if he or she "agreed to limit or stop life support, members of their church would see them as lacking faith in God's ability to heal")
230. see also Robert L. Fine, The Texas Advance Directives Act of 1999: Politics and Reality, 13 HEC FORUM 59, 64 (2001) (explaining that individuals led by the National Right to Life Committee believed that patient surrogates should have the unlimited right to insist on life-sustaining treatment for the patient).
231. This illustration is modeled after a scenario documented by Kevin Simpson, Anesthesia Cited in B-N Boy's Death, PANTAGRAPH (Bloomington, Ill.), Mar. 16, 1996, at A1. In the real case, the young boy died soon after the surgery. Id.
232. Id.
233. Id.
234. See, e.g., TENN. CODE ANN. §29-26-116 (2009) (declaring that the statute of limitations in medical malpractice actions is one year following the date of the event or incident giving rise to the injury, or one year from the date of the discovery of the injury).
235. Fox et al., supra note 27, at 23 (finding that of individuals performing ethics consultation, 34 percent were physicians and 31 percent were nurses) see also Burns & Truog, supra note 20, at 1990-91 ("[T]he delicate task of adjudicating futility disputes between families and [physicians] is done by a group that is virtually indistinguishable from the clinicians themselves.").
236. SIGRID FRY-REVERE, THE ACCOUNTABILITY OF BIOETHICS COMMITTEES AND CONSULTANTS 100 (1992) (emphasis added).
237. Andrew L. Merritt, The Tort Liability of Hospital Ethics Committees, 60 S. CAL. L. REV. 1239, 1292 (1987) ("It is unlikely that many committees identify whether their primary constituency is doctors or patients. Indeed, few of the participants may consciously think in advance of defining their roles in these terms.").
238. See Robert D. Truog, Tackling Medical Futility in Texas, 357 NEW ENG. J. MED. 1, 2 (2007) (recognizing that members of ethics committees are "insiders," and that this is "hardly a 'jury of peers' for a low-income woman of color and her infant son").
239. See Don Milmore, Hospital Ethics Committees: A Survey in Upstate New York, 18 HEC FORUM 222, 235, 239 (2006) (noting that ethics committees constituted of hospital staff may exhibit both institutional biases toward 'groupthink' as well as feel an obligation of loyalty that may color their views of the actions of those with whom they work).
240. Fox et al., supra note 27, at 20.
241. See, e.g., Mildred Z. Solomon et al., Decisions Near the End of Life: Professional Views on Life-Sustaining Treatments, 83 AM. J. PUB. HEALTH 14, 19 (1993) (in which interviewed respondents expressed discomfort with withdrawing treatments due to fear of sanction by peer review boards).
242. See supra Part II.A.3.
243. See supra note 179 for a list of states.
244. Robert D. Truog & Christine Mitchell, Futility - From Hospital Policies to State Laws, AM. J. OF BIOETHICS , Sept.-Oct. 2006, at 19, 19-21.
245. Id.
246. Id.
247. Schloendorff v. Soc'y of N.Y. Hosp., 105 N.E. 92, 93 (N.Y. 1914).
248. MEISEL & CERMINARA, supra note 10, §13.01.
249. Cohen, supra note 21, §18.04[5][b] ("Until the end of the 20th century, there was little legal or medical dispute over the general proposition that there is no legal obligation to provide "medically futile" treatment, even if a patient or a patient's surrogate demands the treatment and can pay for it.").
250. "[P]hysicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefitting their patients." AM. MED. ASS'N, supra note 15, §§2.035, 2.17, 2.20.
251. Allan S. Brett & Laurence B. McCullough, When Patients Request Specific Interventions-Defining the Limits of the Physician's Obligation, 315 NEW ENG. J. MED 1347, 1347-51 (1986).
252. Philip G. Peters, When Physicians Balk at Futile Care, 91 NW. U. L. REV. 798, 841 (1997).
253. Wolf, supra note 35, at 818-19.
254. Nora O'Callaghan, Dying for Due Process: The Unconstitutional Medical Futility Provision of the Texas Advance Directives Act, 60 BAYLOR L. REV. 527, 561 (2008).
255. Id. at 561-62.
256. Gregg v. Georgia, 428 U.S.153, 189 (1976) ("[W]here discretion is afforded ... on a matter so grave as the determination of whether a human life should be taken or spared, that discretion must be suitably directed and limited so as to minimize the risk of wholly arbitrary and capricious action.").
257. IOWA CODE §135.28-29 (2009);
258. SUBSTITUTE DECISION MAKERS TASK FORCE FOR THE IOWA DEPT. OF ELDER AFFAIRS, ALTERNATIVES TO GUARDIANSHIP AND CONSERVATORSHIP FOR ADULTS IN IOWA 14 (2006), available at http://www.state.ia.us/elderaffairs/Documents/ Ombudsman/AlternativesBooklet.pdf.
259. IOWA ADMIN. CODE r. 641-85.3(1) (2009).
260. Ronald D. Eckoff, Letter to the Editor, State Plans for Surrogate Decision Making, 272 J. AM. MED. ASS'N 849, 850 (1994) (explaining that the Iowa SMDB's were established "using the New York rules as a guide").
261. See NY COMP. CODES R. & REGS. tit. 14, §710.1 (2009)
262. Stanley S. Herr & Barbara L. Hopkins, Healthcare Decision Making for Persons With Disabilities: An Alternative to Guardianship, 271 J. AM. MED. ASS'N 1017, 1017 (1994).
263. Eckoff, supra note 209, at 850.
264. IOWA ADMIN. CODE r. 641-85.2(5) (2009) (explicitly providing that the board does not have the authority to make a decision regarding the "discontinuance of medical treatment which is sustaining life functions").
265. IOWA CODE §135.28 (2009) ("A state substitute medical decisionmaking board is established to formulate policy and guidelines for the operations of local substitute medical decisionmaking boards, and to act if a local substitute medical decisionmaking board does not exist.").
266. IOWA ADMIN. CODE r. 641-85.10.
267. Id. at r. -84.2 ("The state [SMDB] shall consist of 15 members at least 4 of whom shall be licensed in Iowa as doctors of medicine and surgery or as osteopathic physicians and surgeons, as defined by law.").
268. Ann Cook & Helena Hoas, Are Healthcare Ethics Committees Necessary in Rural Hospitals?, 11 HEC FORUM 134, 135 (1999).
269. Hoffmann, Regulating Ethics Committees, supra note 30, at 762 ("The 'quality' of ethics committees is likely to vary considerably. Large teaching hospitals in urban centers, for example, are much more likely to have the resources and access to individuals with expertise in medical ethics that are necessary to operate a successful committee, whereas small hospitals and nursing homes in rural areas may have difficulty finding these ingredients.").
270. IOWA ADMIN. CODE r. 641-85.3(1) (requiring local boards to consist of one or more representatives from each of the following categories: (1) physicians, nurses, or psychologists licensed by Iowa; (2) attorneys admitted to practice in Iowa or social workers; and (3) "other individuals with recognized expertise or interest in persons unable to make their own medical care decisions" not included in the first two categories).
271. The Iowa regulations require diversity but fail to require expertise. Id. Interpreting the plain meaning of the regulatory text, it appears as though a board could be composed of only a nurse, a social worker, and a clergyman. Id.
272. In re A.C., 573 A.2d 1235, 1237 n.2 (D.C. 1990) (en banc).
273. Cook & Hoas, supra note 216, at 135
274. cf. N.J. ADMIN. CODE §8:43G-5.1(h) (2009) (requiring that hospitals assure participation by individuals with medical, nursing, legal, social work, and clergy backgrounds in ethics committees).
275. See Fox et al., supra note 27, at 23 (noting a small percentage of hospitals responding to the survey place restrictions on who could request consultations).
276. Truog, supra note 188, at 1.
277. IOWA ADMIN. CODE r. 641-85.4(1) (2009)
278. see Hoffmann, Regulating Ethics Committees, supra note 30, at 761 ("A likely goal of legislation mandating the establishment of ethics committees is to provide access for all patients and healthcare providers to a multidisciplinary group that can provide them with sound advice on ethical dilemmas involved in the treatment of patients.").
279. Iowa requires the application to include a written statement by a physician or dentist describing the proposed medical care, the patient's medical condition, and the risks and benefits of the proposed care and any alternative treatments (including non-treatment). IOWA ADMIN. CODE. r. 641-85.4(3)(g). This requirement is not appropriate in the futility context because the patient's family or surrogate may not be able to meet it.
280. See id. at r. -85.4(3) (including these requirements but adding others that are inapplicable or unnecessary in the futility dispute context, e.g. a statement that the patient does not have any family member, guardian, or attorney-in-fact who is reasonably available and willing to make the medical care decision; the reasons for believing that the patient is medically incompetent; and a physician's statement).
281. Id. at r. -85.6(1).
282. Id. at r. -85.3, -85.6(1).
283. Id. at r. -85.6(1).
284. IOWA ADMIN. CODE. r. -85.2(1) provides a similar definition of "conflict of interest," but it does not exclude a friend of the patient, anyone who has a professional or personal relationship with the healthcare provider, or anyone with an direct or indirect financial interest in the patient.
285. See Sarah Palin, Opinion, Obama and the Bureaucratization of Healthcare, WALL ST. J., Sept. 9, 2009, at A23 (claiming that the president's proposals to create an Independent Medicare Advisory Council and to reimburse doctors for end-of-life counseling would lead to the rationing of healthcare by "death panels").
286. Id.
287. This includes the requirement that board members may not consider potential financial costs associated with life-sustaining treatment, including coverage by insurance providers.
288. In re Conroy, 486 A.2d 1209, 1223 (N.J. 1985) ("The state's interest in preserving life is commonly considered the most significant of the four state interests.")
289. see also Cruzan v. Dir., Mo. Dep't of Health, 497 U.S. 261, 282 (1990) (discussing Missouri's interest in safeguarding the personal element of the choice between life and death through the imposition of heightened evidentiary standards and explaining that a state may simply assert an "unqualified interest in the preservation of human life to be weighed against the constitutionally protected interests of the individual").
290. Decisionmaking criteria prohibiting the consideration of liability as well as qualified immunity, discussed in Part III.B.7 infra, further ensure that liability concerns will not contaminate the decisionmaking process.
291. Samuel L. Tilden, Ethical and Legal Aspects of Using an Identical Twin as a Skin Transplant Donor for a Severely Burned Minor, 1 AM. J.L. &MED. 87, 112-13 (2005) (describing a committee in which the opinion of the "lone surgeon" "carried great weight with the committee").
292. Fine, supra note 180, at 71 (observing that many decisionmakers "show guilt" and say something like, "I know my dad wouldn't want to go on like this, but we just have to keep going because I could never live with myself if I agreed to stop" but that with a clearer statutory process, accept that they are not being singled out)
293. Robert L. Fine & Thomas W. Mayo, Resolution of Futility by Due Process: Early Experience with the Texas Advance Directives Act, 138 ANN. INTERNAL MED. 743, 745 (2003) (explaining that after Texas adopted a clearer process for resolving futility disputes, patients were often relieved that they did not have to make end-oflife medical decisions on their own).
294. Thaddeus Mason Pope, Involuntary Passive Euthanasia in U.S. Courts: Reassessing the Judicial Treatment of Medical Futility Cases, 9 MARQ. ELDER'S ADVISOR 229, 237 (2008).
295. Although the Iowa regulations require notification of these parties, they do not provide a designated time frame. IOWA ADMIN. CODE r. 641-85.5(1) (2009).
296. Id.
297. See Fox et al., supra note 27, at 23 ("Whereas 87 of ECSs 'usually' or 'always' gathered information through direct examination of the patient's medical record, only 54% 'usually' or 'always' gathered information through direct examination of the patient.' " ).
298. See IOWA ADMIN. CODE r. 641-85.5(1) ("The hearing shall be held no less than 48 hours after the patient receives this notification.").
299. Id. at r. -85.5(2).
300. Id. at r. -85.5(2)(a).
301. Id.
302. See Fox et al., supra note 27, at 23 (finding a variety of practices for record-keeping and reporting by ethics consultation services).
303. For example, litigation of the Terri Schiavo and Emilio Gonzalez cases received widespread media coverage. Transcript of Jim Lehrer's Interview of Media Correspondent Terrence Smith, NewsHour: Schiavo: Talk of the Nation (PBS television broadcast Mar. 24, 2005), available at http://www.pbs.org/newshour/ bb/media/jan-june05/schiavo-3-24.html.
304. Hoffmann, Regulating Ethics Committees, supra note 30, at 793 (citing this as a possible concern).
305. Id. ("A provision that keeps the proceedings confidential with some exceptions for monitoring of quality might satisfy both concerns.").
306. See generally Dianne E. Hoffmann, Evaluating Ethics Committees: A View from the Outside, 71 MILBANK Q. 677, 690-94 (1993) (asserting that to provide the greatest amount of patient protection, ethics committees should operate based on an adjudicatory model, which is similar to a court proceeding in the sense that the committee will hear from the relevant parties).
307. IOWA ADMIN. CODE r. 641-85.6(3)(a) (2009)
308. Hoffmann, supra note 250, at 691.
309. IOWA ADMIN. CODE r. -85.6(3)(a).
310. Id. at r. -85.6(3)(b).
311. Id. at r. -85.6(3)(b)-(c).
312. Iowa gives only the patient the right to be present at the hearing. Id. at r. -85.6(3)(d). This clearly would be an unfair requirement in the futility dispute context.
313. See Kopelman, supra note 180, at 582 ("[S]tudies have shown that it is quite common for families to misunderstand the information provided to them by physicians.")
314. Shelton, supra note 102, at 121 (explaining that family members may seek an understanding of the patient's prognosis and that a method of clarifying misunderstandings would be extremely beneficial in resolving end-of-life disputes).
315. This is a variation of IOWA ADMIN. CODE r. 641-85.8(3), which requires a majority vote for consent or refusal of "medical care." As previously mentioned, the definition of "medical care" explicitly excludes the discontinuance of life-sustaining treatment, thus the Iowa SMDBs are not authorized to make futility decisions. Id. at r. -85.2(5).
316. Id. at r. -85.6(3)(f).
317. No similar provision exists for the Iowa SMDBs.
318. See generally Bierlein, supra note 65, at 62-64 (proposing an approach to bioethics mediation)
319. Shelton, supra note 102 ("Mediation of end-of-life treatment disputes provides a forum to counterbalance the coercive nature of the right to terminate treatment.").
320. Shelton, supra note 102, at 134.
321. Id. at 134-35.
322. Hoffmann, supra note 250, at 693.
323. Pope & Waldman, supra note 173, at 149 (arguing that ethics committee mediations are currently just "one-sided negotiations in which surrogates are sure to prevail" because healthcare decisions law gives surrogates disproportionate power).
324. Hoffmann, supra note 61, at 839-41.
325. IOWA ADMIN. CODET. 641-85.8(1) (2009).
326. Id. ("The patient's autonomy should always be respected.")
327. see Superintendent of Belchertown State Sch. v. Saikewicz, 370 N.E.2d 417, 431-34 (Mass. 1977) (defining the actual, autonomously determined interests of the patient as the paramount guiding principle under both the substituted judgment standard and the best interest standard).
328. IOWA ADMIN. CODE r. 641-85.8(2) requires only a preponderance of the evidence. However, courts have mandated the higher standard of clear and convincing evidence when the individual interests at stake in the proceeding are particularly important and more substantial than the mere loss of money.
329. Cruzan v. Dir., Mo. Dep't of Health, 497 U.S. 261, 282 (1990). Because the individual and societal interests at stake in the resolution of a futility dispute are quite substantial, this higher evidentiary standard is more appropriate.
330. O'Callaghan, supra note 204, at 578.
331. The provisions proposed in this paragraph are not included in the Iowa SMDB regulations.
332. Hoffmann, Regulating Ethics Committees, supra note 30, at 767 ("[T]he stated purpose of ethics committees since their inception has been to protect the patient....").
333. Robert Klitzman, Additional Implications of a National Survey on Ethics Consultation in United States Hospitals, AM. J. BIOETHICS, Feb. 2007, at 47.
334. IOWA ADMIN. CODE. r. 641-85.8(2)(a)-(d) (slightly reworded to achieve better balance of interests).
335. E.g., Mark P. Aulisio et al., supra note 36, at 59-66 (summarizing the conclusions of the American Society for Bioethics and Humanities Task Force report on the core competencies for healthcare ethics consultation)
336. Nancy N. Dubler & Jeffrey Blustein, Credentialing Ethics Consultants: An Invitation to Collaboration, AM. J. BIOETHICS, Feb. 2007, at 35 ("It has been clear for some time that there is a need for substantive standards for-and a clear nation of process to direct-clinical ethics consultation. It should not be the case that a service this common proceeds with no precise idea of who is qualified to do these consultations, what educational background and skills are needed, and how consultations should be conducted, documented, and reviewed for quality.").
337. But see Jeffrey P. Bishop et al., Of Goals and Goods and Floundering About: A Dissensus Report on Clinical Ethics Consultation, 21 HEC FORUM 275, 278 (2009) (contending that the standardization of clinical ethics consultation obscures the "goods" that are fundamental to the field (e.g., listening, interpretative skills, moral inquiry), which inherently resist standardization).
338. Bishop et al., supra note 274, at 278.
339. See Linda T. Powell, Hospital Ethics Committees and the Future of Healthcare Decision Making, 20 HOSP. MATERIEL MGMT. Q., Aug. 1998, at 82, 83 ("It is likely that committee members will act from a sense of duty to the institution, their fellow professionals, and the preservation of health resources.").
340. Aulisio et al., supra note 36, at 66.
341. IOWA ADMIN. CODE r. 641-85.12 provides qualified immunity for Iowa SMDBs, except for those acts or omissions "constituting willful or wanton misconduct." An exception for actions taken in bad faith or with malicious purpose appeared to create a clearer standard.
342. O'Callaghan, supra note 204, at 572.
343. See id. at 571 (defining qualified immunity as "a standard by which an official is insulated from liability unless he violates clearly established rights of which a reasonable person would know" and contrasting this with absolute immunity).
344. IOWA ADMIN. CODE r. 641-84.8 and -85.11 require only that the local board submit an annual report to the state board for review, and that the report must contain a summary of information regarding the number, nature, and disposition of applications filed with the local board in the preceding year. This proposal places oversight authority in the state's department of health, requires review of the state board, provides more detailed reporting requirements, and provides the possibility of sanctions for noncompliance.
345. See Hoffmann, supra note 250, at 695 (providing that evaluators of ethics committees must try to assure that there is no statistically significant difference in ethics committee recommendations for certain vulnerable or traditionally disadvantaged groups).
346. See, e.g., MEISEL & CERMINARA, supra note 10, §§13.01, 13.09 (describing the current state of futility disputes, how they are likely to change in the future, and likely future legal and extra-legal means to resolve them)
347. Pam Belluck, Even as Doctors Say Enough, Families Fight to Prolong Life, N.Y. TIMES, Mar. 27, 2005, at A1 ("About 15 years ago, at least 80 percent of the cases were right-to-die kinds of cases .... Today, it's more like at least 80 percent of the cases are the other direction: family members who are pushing for continued or more aggressive life support and doctors and nurses who think that that's wrong." (quoting Dr. Lachlan Forrow, Dir., Ethics Program, Beth Israel Deaconness Med. Ctr., Boston, MA)).
348. MEISEL & CERMINARA, supra note 10, §13.09.
349. Id.
350. Fine, supra note 180, at 60. An example of a so-called "halfway technology" is a machine that supplants the function of failed organs. Id.;
351. see also Partners CEO Addresses Ethical Challenges, (New England Cable News television broadcast Mar. 3, 2009), available at http://www.necn.com/ Boston/Business/2009/03/03/Partners-CEO-addressesethical/1236125930.html (quoting an executive of a large Boston healthcare corporation as stating "End-of-life issues will become even more significant as medicine advances and society ages.").
352. See Elizabeth B. Herrington, Strengthening the Older Americans Act's Long-Term Care Protection Provisions: A Call for Further Improvement of Important State Ombudsman Programs, 5 ELDER L.J. 321, 325-326 (1997) (citing the Population Reference Bureau's prediction that the number of those at least sixty-five is expected to rise from 12.6 percent in 1997 to 17.7 percent in 2020).
353. Cohen, supra note 21, §18.06 (explaining that these groups have reached this agreement because court proceedings can be time-consuming and emotionally and financially costly for both patients and providers and citing several decisions that support this conclusion).
354. See id. §18.06 ("To avoid some of the negative aspects of judicial intervention, institutional dispute resolution mechanisms have been created .... One mechanism for resolving disputes that deserves special attention is the institutional ethics committee.").
355. Capron, supra note 29, at 422.
356. Spielman, supra note 33, at 180.
357. Hoffmann, Does Legislating Hospital Ethics Committees Make Sense?, supra note 30, at 108, 115 (reporting the results of a multi-state survey in which it was determined that nearly all members of ethics committees, even legal counsel, were hospital employees and the vast majority were health professionals and that 42 percent of respondents in a survey of hospital staff in five Maryland hospitals "thought that the role of the [ethics committee] was to decide ethical issues")
358. Hoffman, Regulating Ethics Committees, supra note 30, at 758-61 (outlining many of the same findings).
359. See supra Part II.
360. See Pope, supra note 31, at 274-84 ("For example, a treatment decision may be biased when the decision maker is prejudiced against the race of the patient.").
361. IOWA CODE §135.28-135.29 (2009).