Published online by Cambridge University Press: 06 January 2021
On January 7, 2003, Sydney Cowan, a healthy six-year-old girl, underwent skin harvesting, specifically to be used for her badly burned identical twin sister, Jennifer. A day earlier, the Probate Court of Jefferson County, Alabama, after considering whether a healthy minor twin sibling could serve as a skin donor for her severely burned sister, authorized parental consent to the surgery. More accurately, the court addressed whether Sydney could undergo surgical procedures that provided her with no physical benefit, but, rather, resulted in harmful effects, such as acute postoperative pain, permanent residua, and potential long-term emotional and psychological dysfunction.
Although the transplants were extraordinarily successful, and the newspaper article depicted Sydney's participation in heroic terms, the harvesting of Sydney's skin was ethically problematic. Specifically, I assert that the use of an incompetent minor as a skin transplant donor, even if an identical twin, is not justified unless the transplant will save the recipient's life.
This manuscript is taken in part from the author’s LLM Thesis in Health Law, University of Houston Law Center.
1 A surgical procedure in which skin is removed from a donor for transplant.
2 Dave Parks, Twin Operation Raises Ethics Issues, Birmingham News, Jan. 24, 2003, available at LEXIS, News Library, Birmnw File.
3 In re Sidney Cowan, No. 180564 (Probate Court of Jefferson County, Ala. 2003).
4 The facts of this case were pieced together from court records, media publications, professional conference presentations, and discussions with the burn surgeon using the author's background as a pediatric critical care specialist. See In re Sidney Cowan, No. 180564; see generally Parks, supra note 2.
5 The high mortality rate in burns is correlated with infection from surface areas lacking the impervious barrier to germs provided by skin. Das, Aninda & Sik Kim, Kwang, Infections in Burn Injury, 19 The Pediatric Infectious Disease Journal 737 (2000)CrossRefGoogle ScholarPubMed.
6 Allografts and xenografts are temporary biological coverings that must be replaced or covered with a permanent cover such as an autograft or cultured sheets of skin after a few weeks. Sheridan, Robert L., Burn Care: Results of Technical and Organizational Progress, 290 JAMA 719 (2003)CrossRefGoogle ScholarPubMed.
7 This process takes three to four weeks to generate.
8 In re Sidney Cowan, No. 180564, Guardian Ad Litem Report to the Court.
9 In re Sidney Cowan, No. 180564, Verified Petition for Declaratory Judgment.
10 In re Sidney Cowan, No. 180564, Order on Petition for Declaratory Judgment.
11 Id.
12 Id.
13 Id.
14 Id.
15 Id.
16 In re Sidney Cowan, No. 180564, Guardian Ad Litem Report to the Court.
17 In re Sidney Cowan, No. 180564, Verified Petition for Declaratory Judgment.
18 In re Sidney Cowan, No. 180564, Guardian Ad Litem Report to the Court.
19 Id.
20 In re Sidney Cowan, No. 180564, Verified Petition for Declaratory Judgment.
21 Boudreaux, AM & Tilden, SJ, Ethical Dilemmas for Pediatric Surgical Patients, 20 Anesthesiology Clinics Of North America 227, 232 (2002)CrossRefGoogle ScholarPubMed.
22 Childress, James F., The Normative Principles of Medical Ethics, in Medical Ethics 27, 33–34 (Veatch, Robert M. ed., 1997)Google Scholar.
23 ALBERT R. JONSEN ET AL., CLINICAL ETHICS: A PRACTICAL GUIDE TO ETHICAL DECISIONS IN CLINICAL MEDICINE (4th ed. 1998).
24 Id.
25 Sheridan, Robert L., Burns, 30 Critical Care Medicine S500 (2002)CrossRefGoogle ScholarPubMed. The Shriners Burns Institute in Boston reported a 20-22% mortality rate in children suffering burns of at least 70% body surface area over the period from 1979 to 1986. See Tomkins, RG & Burke, JF, Progress In Burn Treatment and the Use of Artificial Skin, 14 World Journal Of Surgery 819 (1990)CrossRefGoogle Scholar.
26 Id.
27 Id.
28 COURTNEY M. TOWNSEND ET AL., SABISTON TEXTBOOK OF SURGERY: THE BIOLOGICAL BASIS OF MODERN SURGICAL PRACTICE 355 (16th ed. 2001).
29 Sheridan, Robert L. & Tompkins, Ronald G., Skin Substitutes in Burns, 25 Burns 97 (1999)CrossRefGoogle ScholarPubMed.
30 Id.
31 Id. at 97.
32 Id. at 99.
33 Id. at 97.
34 Id. at 99-100.
35 See TOWNSEND ET AL., supra note 28, at 356.
36 See In re Sidney Cowan, No. 180564, Guardian Ad Litem Report to the Court.
37 See In re Sidney Cowan, No. 180564, Verified. Petition for Declaratory Judgment, at ¶ 6.
38 See TOWNSEND ET AL., supra note 28, at 356.
39 JONSEN ET AL., supra note 23, at 47-103. The elements of informed consent include the following: the preconditions of competence to decide and voluntariness in deciding medical treatment; disclosure and understanding of all material information required to make a medical treatment decision; and final decision-making and authorization for treatment. THOMAS L. BEAUCHAMP & JAMES F. CHILDRESS, PRINCIPLES OF BIOMEDICAL ETHICS 77-89 (5th ed. 2001).
40 ALLEN E. BUCHANAN & DAN W. BROCK, DECIDING FOR OTHERS: THE ETHICS OF SURROGATE DECISION MAKING 136 (1989).
41 American Academy of Pediatrics (AAP), Informed Consent, Parental Permission, and Assent in Pediatric Practice, 95 Pediatrics 314, 315 (1995)Google Scholar.
42 Id. at 315-16.
43 The constant reminder of Sydney's sacrifice and the accompanying feelings of indebtedness would bring on these psychological effects.
44 See American Academy of Pediatrics (AAP), supra note 41, at 316-17.
45 Id.
46 See In re Sidney Cowan, No. 180564, Guardian Ad Litem Report to the Court, at 3.
47 Id.
48 Id.
49 See BUCHANAN & BROCK, supra note 40, at 142.
50 Id.
51 Id. at 142-43.
52 Id. at 150-51.
53 Hellman, Lawrence K., A Better Way to Make State Legal Ethics Opinions, 22 Okla. City U. L. Rev. 973, 1003 n.132 (1997)Google Scholar.
54 See supra note 4 and accompanying text.
55 BEAUCHAMP & CHILDRESS, supra note 39, at 102. Any one of several different standards may apply in a case of incompetent patients; the standards are advanced directives, substituted judgment, and the patient's best interest. Advanced directives and substituted judgment standards are based upon prior autonomous preferences of a currently incompetent patient. Thus, they are considered subjective standards. For patients who have neither reached competency nor will never attain it, the best interest standard is most appropriate.
56 Id. at 103.
57 See Parks, supra note 2.
58 Parham v. J.R., 442 U.S. 584, 602-03 (1979).
59 The parents’ petition cites three cases, Hart v. Brown, 289 A.2d 386 (Conn. Super. Ct. 1972), Strunk v. Strunk, 445 S.W.2d 145 (Ky. 1969), and Little v. Little, 576 S.W.2d 493 (Tex. Civ. App. 1979).
60 Hart, 289 A.2d at 386.
61 Id. at 387.
62 Id. at 391.
63 Id.
64 See Lewis, Melvin, Kidney Donation by a 7-year-old Identical Twin Child, 13 J. Am. Acad. Adol. Child Psychiatry 221 (1974)CrossRefGoogle ScholarPubMed. This paper gives an account of the psychiatrist who evaluated the twins in the Hart case. He particularly points out the psychological effects on the family one to two years after the transplant. He noted that the donor twin had recurrent dreams involving loss of a body part. Also the psychiatrist had the chance to see the healthy twin again some 14 years later when she was a young adult. Some of the long-term psychological effects he discovered were that throughout adolescence she became overprotective of her previously ill sibling because of concern about physical injury to her donated kidney. Later she moved to Europe at age 18 without her sister and she never seemed able to form close intimate relationships with others. Personal communication with Melvin Lewis on 6/12/03.
65 Strunk, 445 S.W.2d at 148.
66 For a discussion of transplants from minor donors in Massachusetts, see Baron, Charles H. et al., Live Organ and Tissue Transplants from Minor Donors in Massachusetts, 55 B.U. L. Rev. 159 (1975)Google ScholarPubMed. For a discussion of the unreported cases cited in Hart, see Curran, William J., A Problem of Consent: Kidney Transplantation in Minors, 34 N.Y.U. L. Rev. 891 (1959)Google Scholar.
67 Bonner v. Moran, 126 F.2d 121 (1941).
68 In Bonner, a surgeon was sued for assault and battery for using a fifteen-year-old as a skin graft donor for his cousin without his mother's consent. The court held that the mother's consent was necessary for operation on a child.
69 Hart, 289 A.2d at 391.
70 Id.
71 Strunk, 445 S.W.2d at 146.
72 Id.
73 Id.
74 Id.
75 Id. at 147.
76 Id. at 148.
77 Id.
78 Hart, 289 A.2d at 390.
79 See Bonner, 126 F.2d at 121.
80 Id.
81 See id. at 122.
82 See id. at 123.
83 See id.
84 See Robbennolt, Jennifer K. et al., Advancing the Rights of Children and Adolescents to be Altruistic: Bone Marrow Donation By Minors, 9 J.L. & Health 213, 217 (1994)Google ScholarPubMed. citing Adams, Rodney K., Live Organ Donors and Informed Consent: A Difficult Minuet, 8 J. Legal Med. 555, 577 (1987)CrossRefGoogle ScholarPubMed.
85 Madsen v. Harrison, No. 68651 Eq. (Mass. Sup. Jud. Ct. 1957); Huskey v. Harrison, No. 68666 Eq. (Mass. Sup. Jud. Ct. 1957); Foster v. Harrison, No. 68674 Eq. (Mass. Sup. Jud. Ct. 1957). For a detailed summary of these cases, see generally Curran, supra note 66.
86 See Curran, supra note 66, at 892-94.
87 Even though identical twins were involved, only one of the three transplants achieved twoyear survival. Id. at 898.
88 Parens patriae is “the principle that the state must care for those that cannot care for themselves.” BLACK's LAW DICTIONARY 1114 (6th ed. 1990). The words literally translated mean “parent of the country.” Id.
89 See Baron et al., supra note 66, at 162-63.
90 See Strunk, 445 S.W.2d at 149.
91 Commentators and courts have criticized Strunk and its progeny as confounding the different legal standards of substituted judgment and best interests. However, as pointed out earlier in the text, these courts used the term “substituted judgment” as a doctrine to find jurisdiction and not to provide a legal standard for decision. See infra note 98 at 496-500.
92 Little v. Little, 576 S.W.2d 493 (Tex. Civ. App. 1979).
93 Id. at 500.
94 Id. at 494.
95 Id.
96 See id. at 494-500.
97 See id. at 497. In addition, Texas law prohibits the guardian of the estate of an incompetent from making a gift from the estate of the ward, even if the ward, if competent, would have done so, unless, however, the incompetent would undergo the procedure if competent, and such procedure were to result in benefit to the incompetent. Id. at 497-98.
98 Id. at 498.
99 Id. at 499.
100 Id. In this case, the court viewed dialysis or a cadaver transplant as inferior medical alternatives. Id.
101 McFall v. Shrimp, 10 Pa. D. & C.3d 90 (1978).
102 Id. at 90.
103 See id. at 91.
104 In re Guardianship of Pescinski, 226 N.W.2d 180 (Wis. 1975).
105 Id. at 180.
106 Id. at 181.
107 Id.
108 Id. at 180.
109 Id. at 182.
110 Id. In a later case, In re Guardianship of Eberhardy, 307 N.W.2d 881 (Wis. 1981), the Supreme Court of Wisconsin revisited its holding in Pescinski related to jurisdiction. The court disavowed an interpretation of that holding that the courts lacked jurisdiction to hear the matter because the state constitution granted plenary jurisdiction to the circuit court. Rather, as in Eberhardy, the court viewed the holding in Pescinski as “an exercise of judicial restraint under particular circumstances. Those circumstances included lack of consent of the GAL, no showing of benefit to the ward, and absence of legislative guidance.” Id. at 893 n.13.
111 See In re Guardianship of Pescinski, 226 N.W.2d at 182-83 (Day, J., dissenting).
112 Id. at 183. In fact, Sydney's GAL proposed these standards to the Cowan court, but never argued that Jennifer was already one month out from injury without exhibiting any life-threatening complications, that she had been grafted with alternative sources several times, or that the cultured epithelial cells were ready for transplantation. Concluding that the benefits of harvesting outweighed the risks, the court found that skin harvesting was in Sydney's best interest.
113 In re Richardson, 284 So.2d 185 (La. App. 1973).
114 Id. at 187.
115 Id.
116 Id.
117 Curran v. Bosze, 566 N.E.2d 1319 (1990).
118 Id. at 1321.
119 Id. at 1320.
120 Id.
121 Id. (internal quotations omitted).
122 Id. at 1321. The author realizes that the risk of bone marrow harvesting differs from skin harvesting. In general, the risks of bone marrow harvesting include only the risks of the procedure itself and the associated anesthesia without long-term physical sequelae such as noticeable scarring. Like skin and unlike the kidney, bone marrow is a regenerating organ and removal of a portion of it does not leave an anatomical or functional deficit. Fewer risks are associated with bone marrow harvesting than other transplant procedures. Id. at 1337.
123 Id. at 1321.
124 Id.
125 Id. at 1331.
126 Id. at 1326.
127 Id. at 1325-26.
128 Id.
129 Id.
130 Id. at 1331.
131 Id. at 1343.
132 Id.
133 Id.
134 Id. at 1343-44.
135 Id. at 1344.
136 Id.
137 Id.
138 Id.
139 See, e.g., In re Richardson, 284 So.2d at 185 (proposed donor seventeen-year-old with severe mental retardation); In re Guardianship of Pescinski, 226 N.W.2d at 180 (proposed donor a catatonic schizophrenic).
140 See, e.g., In re Richardson, 284 So.2d at 185 (no immediate risk of death in potential renal transplant recipient receiving dialysis); Little, 576 S.W.2d at 493 (renal transplant needed to prevent progressive deterioration in sibling with end-stage renal disease with no other alternative).
141 See Rosato, Jennifer L., Using Bioethics Discourse To Determine When Parents Should Make Health Decisions for Their Children: Is Deference Justified?, 73 Temp. L. Rev. 1, 36 (2000)Google ScholarPubMed (drawing attention to judicial deference for parental authority in health care decision-making instead of focusing on moral authority).
142 See Cayette, Cara, Organ Harvests from the Legally Incompetent: An Argument Against Compelled Altruism, 41 B.C. L. Rev. 465, 514 (2000)Google Scholar (“The only solution to this dilemma is legislation which requires that an individual be legally competent to give an informed valid consent before he or she may be a candidate for organ donation.”).
143 See Morley, Michael T., Proxy Consent to Organ Donation by Incompetents, 111 Yale L.J. 1215, 1248 (2002)CrossRefGoogle ScholarPubMed (“The decision of parent-guardians to tender proxy consent should not be second guessed by the courts. Whether or not one feels that parent-guardians are bound only to consider the best interests of the potential donor, final resolution of the issue is constitutionally committed to their sole discretion.”).
144 See Shartle, Bryan, Proposed Legislation for Safely Regulating the Increasing Number of Living Organ and Tissue Donations by Minors, 61 La. L. Rev. 433, 463 (2001)Google ScholarPubMed (“The fact that only two of the seven reported cases (i.e. appealed cases) discussed above involved a living donation by a mentally competent minor gives rise to a fair assumption that such donations are usually approved possibly rubber stamped’ by district courtsand, thus, the cases never appealed. [citation omitted] A legislative standard ensures that every living organ or tissue donation by a minor, whether a questionable donation’ or not is reviewed on its own merits, rather than through case law analysis.”). Also, Alabama has a statutory exception for bone marrow donation by minors. ALA. CODE § 22-8-9 (West 2003) (“Any minor who is 14 years old or older, or has graduated from high school, or is married, or having been married is divorced or is pregnant, may give effective consent to the donation of his or her bone marrow for the purposes of bone marrow transplantation. A parent or legal guardian may consent to such bone marrow donation on behalf of any other minor.”).
145 See Lebit, Lynn E., Compelled Medical Procedures Involving Minors and Incompetents and Misapplication of the Substituted Judgment Doctrine, 7 J.L. & Health 107, 128 (1992-93)Google ScholarPubMed (“Since this standard will be based on a presumption that no compelled procedure is in one's best interests, one can only rebut this presumption by clear and convincing evidence ….he proof required will be much more than an amorphous psychological benefit which may inure upon the minor ….#x201C;). See also Griner, Robert W., Live Organ Donations Between Siblings and the Best Interest Standard: Time for Stricter Judicial Intervention, 10 Ga. St. U. L. Rev. 589, 610 (1994)Google ScholarPubMed (“The benefit to be conferred on the donor, establishing the tissue donation as being in the donor's best interest, should be shown by clear and convincing evidence.”).
146 See Robbennolt, Jennifer K. et al., Advancing the Rights of Children and Adolescents To Be Altruistic: Bone Marrow Donation By Minors, 9 J.L. & Health 213, 244 (1995)Google Scholar (“Such factors might include: the minor's capacity to appreciate the risks and benefits of a bone marrow harvest; the minor's capacity to appreciate the nature of the potential recipient's condition; the minor's relationship to the potential recipient; the minor's wishes regarding the harvest; the parent's wishes regarding the harvest; the availability of a primary caregiver to provide emotional support to the minor donor; the risks and benefits of the procedure to the minor (including psychological risks and benefits) if they can be reasonably estimated.”). See also Huna, Patricia, Infants As Organ Transplant Donors: Should It Happen?, 6 Sum Hthlaw 24, 26 (1992)Google Scholar (“[S]ix factors emerge which could be used to guide future legislation in this subject area. They are the need for consent of the guardian; a substantial need by the donee and a strong probability of benefit to him or her; an absence of another medically preferable alternative; minimal present and future risks to the donor; strong evidence of psychological benefit to the donor; and an independent physician for the donor.”). See also Dufault, Rachel M., Bone Marrow Donations By Children: Rethinking the Legal Framework in Light of Curran v. Bosze, 24 Conn. L. Rev. 211, 245 (1991)Google Scholar (“Modified as this comment suggestseliminate the presumption in favor of parental decision-making, and embrace values of altruism as to childrenthe best interests test need no longer suffer from vagueness and manipulation.”).
147 Hart, 289 A.2d at 387.
148 Dialysis treatment is not a markedly preferable option, as it burdens the affected child and disrupts the entire family. See id. at 388.
149 Curran, 566 N.E.2d at 1321.
150 Actually, the twelve-year-old half-brother died five months after bone marrow transplantation was recommended as his only chance of survival. His death preceded the opinion of the Illinois Supreme Court by one month. See Dufault, supra note 157, at 246.
151 See Sheridan, supra note 25, at S500; see also Blakeney, et al., Long-Term Psychological Adjustment Following Burn Injury, 9 J. Burn Care Rehabil. 661, 661-65 (1988)CrossRefGoogle ScholarPubMed; Herndon, et al., The Quality of Life After Major Thermal Injury in Children: An Analysis of 12 Survivors with Greater Than or Equal to 80% Total Body, 70% Third-Degree Burns, 26 J. Trauma 609, 609-19 (1986)CrossRefGoogle ScholarPubMed.
152 See generally Huna, supra note 157.
153 See In re Sidney Cowan, No. 180564 at 645. A priori is “from the cause to the effect; from what goes before.” BLACK's LAW DICTIONARY, supra note 88, at 103.
154 See Newmark v. Williams, 588 A.2d 1108, 1110 (Del. 1991). This case presents a classic misapplication of statistics holding that chemotherapy for a child with Burkitt's lymphoma yielding a 40% two-year survival rate was too burdensome to justify treatment. The court essentially assigned the child to 0% survival from a then undetermined survival group.
155 Steven E. Wolf et al., Mortality Determinants in Massive Pediatric Burns: An Analysis of 103 Children With 80% TBSA Burn ( 70% Full-Thickness), ANNALS OF SURGERY, May 1997, at 554, 554-65.
156 See id.
157 See supra note 5 and accompanying text.
158 Survival is calculated by the following relationship: predicted number of survivors /(predicted number of survivors plus predicted number of non-survivors). As non-survivors drop out the percentage of predicted survivors increases.
159 See Sheridan, supra note 25, at S500 and accompanying text.
160 Wolf et al., supra note 155, at 554-65. In fact, at the time of the transplantation some permanent coverage had already been accomplished using autografts to cover Jennifer's anterior surface burns. Also, fortuitously the cultured skin cells arrived earlier than anticipated so the cultured cells and isografts were both used to permanently cover the posterior surface areas. Ethics of Skin Transplantation Between Identical Twins to Treat Acute Burns, Children's Hospital of Alabama Pediatric Grand Rounds, Oct. 2, 2003.
161 Wolf et al., supra note 155, at 554-65.
162 See Das & Kim, supra note 5 and accompanying text.
163 Of course, if Jennifer's surgeon knew of better outcomes elsewhere and believed he could not effectively achieve the same result, then the best option would be to transfer Jennifer.
164 One could argue that the surgeon's opinion should be discounted altogether because he suffers from his own conflict of interest created by his duty to treat Jennifer and the physician's duty to do no harm to Sydney. This is simply another reason to weigh seriously the objective data on burn treatment.
165 NANCY L. SEGAL, ENTWINED LIVES: TWINS AND WHAT THEY TELL US ABOUT HUMAN BEHAVIOR 96-100 (2000).
166 Id.; BARBARA SCHAVE KLEIN, NOT ALL TWINS ARE ALIKE: PSYCHOLOGICAL PROFILES OF TWINSHIP 1 (2003).
167 SEGAL, supra note 165, at 96-100.
168 Id. at 98.
169 Id. at 99.
170 Id. at 98-99.
171 Id. at 99.
172 Id. at 285-87.
173 Id.
174 Id. at 287.
175 KLEIN, supra note 166 and accompanying text.
176 Id. at 8.
177 Id.
178 Id. at 8-11.
179 Id. at 104.
180 Id. at Appendix II.
181 See generally In re Sidney Cowan, No. 180564.
182 See McGee, et al., A National Study of Ethics Committees, 1 Am. J. Bioethics 60, 62 (2001)CrossRefGoogle ScholarPubMed (noting that physicians and nurses dominate the composition of ethics committees).
183 Id. at 63.
184 See generally In re Sidney Cowan, No. 180564.
185 Id.
186 See Miller, RB, Extramural Ethics Consultation: Reflections on the Mediation/Medical Advisory Panel Model and a Further Proposal, 13 J. Clinical Ethics 203, 212 (2002)Google Scholar (proposing an algorithm to resolve conflicts that are evaluated by expert medical and ethical consultants prior to ethics committee review).
187 See Evans, Donald, Ethical Review of Innovative Treatment, 14 Healthcare Ethics Committee Forum 53, 59 (2002)Google ScholarPubMed (reviewing the New Zealand experience with regional ethics committees for innovative care, which were formed as a reaction to the inadequacy of hospital ethics committees in that country).
188 See Rosato, supra note 141, at 28 (“[C]ourts are reluctant to deal with moral dilemmas presented in the health care decision-making area.”).
189 See Baron, Charles H., Medicine and Human Rights: Emerging Substantive Standards and Procedural Protections for Medical Decision Making Within The American Family, 17 Fam. L.Q. 1, 34 (1983)Google ScholarPubMed (proposing that a strong adversarial approach of a GAL is necessary for due process protection, stating, “The guardian's role should be defined as that of an advocate of the child's interest in not acting as a donor ….#x201C;) (emphasis added.).
190 See In re Sidney Cowan, No. 180564, at 650, 651. The Cowans filed the petition January 2, 2003 and the Probate Court of Jefferson County issued its decision January 6, 2003.
191 ALA. CODE §§ 26-2A-31, 26-2A-73. Conceivably, the court could have found subject matter jurisdiction in the inherent powers of a court of equity, as other courts have done. Strunk, 445 S.W.2d at 145; Hart, 289 A.2d at 386.
192 See In re Sidney Cowan, No. 180564, at 660.
193 Id. at 659.
194 Id. at 652.
195 See In re Guardianship of Pescinski, 226 N.W.2d at 183.
196 See In re Sidney Cowan, No. 180564, at 653.
197 See id. at 660-61.
198 See generally In re Sidney Cowan, No. 180564.
199 Id. at 661.
200 Ross, L.F., Moral Grounding for the Participation of Children as Organ Donors, 21 J.L. Med. Ethics 251, 251-57 (1993)CrossRefGoogle ScholarPubMed.