American Journal of Law & Medicine

Ethical and legal aspects of using an identical twin as a skin transplant donor for a severely burned minor.

I. INTRODUCTION

On January 7, 2003, Sydney Cowan, a healthy six-year-old girl, underwent skin harvesting, (1) specifically to be used for her badly burned identical twin sister, Jennifer. (2) 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. (3) 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. I develop this thesis in several foundational sections. In Part II, I present the facts of the girls' case. In Part III, I review the current treatment of burns and provide a general framework for ethical analysis of burn treatment via skin transplantation. In Part IV, I summarize the legal approach toward the use of incompetents as transplant donors. In Part V, I re-examine each of the previously discussed areas with reference to Jennifer and Sydney, specifically identifying weaknesses in the medical, ethical, and legal foundations supporting the decision to move forward with the skin harvesting procedures. Major deficiencies include the high likelihood that Jennifer would have survived her burn injuries without skin transplantation and biased ethical and judicial procedures that led to the approval of skin harvesting from Sydney. Since these deficiencies are likely to be systemic in nature and widely prevalent, in Part VI, I draw attention to the multiple pitfalls encountered in this treatment decision and offer some recommendations for hospital ethics committees faced with serious ethical treatment dilemmas. Finally, in Part VII, I offer some concluding remarks.

II. THE CASE OF JENNIFER AND SYDNEY (4)

On December 9, 2002, Jennifer Cowan was injured when her father's attempt to light the family fireplace resulted in an explosion. As a result, Jennifer suffered third-degree burns of over 80% of her body surface area--only her head, hands, and intertriginous areas were spared. Doctors estimated that Jennifer had a 30-50% chance of survival. Following a week of stabilizing treatment, including five days on a mechanical ventilator, Jennifer's treatment focused on re-establishing a protective barrier over her burned areas. (5) Her surgeon removed her dead skin and covered exposed areas with whatever unburned skin could be harvested from unburned parts of Jennifer's body (i.e., autografts). Because Jennifer did not have enough unburned skin to cover all of her burned areas, additional human skin allografts were obtained using skin harvested from cadaveric skin donors. Doctors also used porcine xenografts (i.e., pigskin) to complete the job. (6) Finally, a small piece of Jennifer's normal skin was removed (i.e., biopsied) and shipped to a laboratory to grow sheets of new skin. (7)

Shortly after her injury, Jennifer's surgeon learned that she was an identical twin. Upon learning this information, he entertained the notion that a skin graft from her identical twin, because of its identical genetic make-up, would give Jennifer her best chance of survival. Sensing that operating on Sydney for a skin graft donation would raise ethical and legal concerns, however, the surgeon requested review by the hospital ethics committee. The ethics committee interviewed Jennifer's family, her surgeon, and a consulting psychologist who had examined both Sydney and the parents. After discussion and deliberation, the committee offered the following recommendations: (1) the proposed skin grafting from Sydney to Jennifer represented a valid ethical option because Sydney would benefit from a continuing close personal relationship with Jennifer as identified by preliminary psychological evaluations; (2) follow-up psychological support should be provided to Sydney during and following the donation period; (3) Sydney's assent to the procedures was mandatory throughout the donation period; and (4) a court order to proceed with donation should be obtained before instituting isografting procedures. (8)

On January 3, 2003, the girls' parents petitioned for a court order authorizing parental consent to the skin transplant operations and any associated procedures. (9) The judge appointed a guardian ad litem ("GAL") for each minor and set the matter for hearing three days later. (10) At the hearing, the court accepted written reports from each GAL and took testimony from the parents, the surgeon, the consulting psychologist, and the hospital's medical director. (11) The court also conducted a personal interview with the proposed donor, Sydney. (12) After noting specific objections voiced by Sydney's GAL, the court concluded that, in light of the facts and circumstances before it, the skin transplants were medically necessary and in the best interest of Jennifer. (13) In addition, the court held that the procedures posed negligible risks to Sydney as a donor and served her best interest. (14) Finally, the court stated that because the girls' parents were adequately informed of the physiological and psychological risks and benefits of the procedures, they therefore had the right to give informed consent to the operations. (15)

The probate court, however, failed to offer evidence, ethical principles, or legal precedent supporting its conclusions. Important evidence missing from the court's opinion included the surgeon's testimony estimating Jennifer's risk of mortality at 40-60% without skin grafts from Sydney and 10% with such grafts. (16) The surgeon further testified that the risks accompanying Sydney's donor harvesting procedures were minimal. (17) Moreover, while permanent discoloration of the skin at the harvested sites was inevitable and scarring was possible, the donor sites would include only the backs of the head, torso, and thighs, areas not ordinarily visible. (18)

The consulting psychologist acknowledged that Sydney faced substantial and unpredictable risks whether or not she served as a donor. (19) If she were a donor, she would suffer physical side effects, including short-term acute pain and long-term skin discoloration and/or scarring. In addition, she would be at risk of long-term psychological injury, such as reduced self-esteem and feelings of isolation from being different, both of which could cause her to avoid intimate relationships. Sydney's self-esteem would increase if she served as a donor and her sister survived, whereas she could suffer severe emotional damage if she was not a donor and her sister died as a result. At the end of questioning, the psychologist acknowledged that identical twins generally form a greater bond than that found in routine sibling relationships.

Finally, the girls' parents unequivocally stated their preference for performance of the requested procedures. (20) They were of the opinion that Sydney wanted to assist Jennifer if she could, and undergoing the proposed transplant procedures offered the best hope of keeping their family intact. Overall, the evidence for skin harvesting showed strong medical and parental support, Sydney's concomitant assent, and equivocal prediction on psychological benefits for Sydney.

III. BIOETHICS AND SIBLING TRANSPLANTS

Clinical bioethical decision-making in a pediatric surgical case requires analysis of the decision in light of established ethical principles. (21) Major ethical principles include respect for persons (i.e., autonomy), benefit to others (i.e., beneficence), harm avoidance (i.e., nonmaleficence), and fair distribution of the benefits and burdens of treatment (i.e., justice). (22) Jonsen et al. have proposed a widely accepted framework to examine ethical issues in clinical bioethics. (23) Their technique calls for case evaluation in each of four areas: (1) medical indications for treatment, including risks, benefits, and burdens; (2) patient preferences based on patient autonomy; (3) quality of life issues; and (4) contextual features, including socioeconomic, family, and legal issues. (24) This section examines each of these areas in light of Jennifer and Sydney.

A. MEDICAL INDICATIONS

A rational assessment to determine whether a proposed medical treatment is indicated depends on the natural history of the clinical condition and the spectrum of available treatments. Severe burns in children are usually managed at burn centers and result in prolonged hospitalization involving complex management. (25) Hospitalizations can be divided into four phases based on treatment priorities: initial evaluation/resuscitation, initial wound excision and biological closure, definitive wound closure, and rehabilitation. (26) The initial resuscitative phase focuses on stabilization of vital organ function and identification of the nature and extent of the burns, as well as any associated injuries. (27) This phase is characterized by typical interventions found in most intensive care units, such as establishment of artificial airways, mechanical ventilation, and massive fluid resuscitation to correct for fluid losses in injured tissue and the environment. Doctors define burns according to the depth, or severity, of the skin's injury. Burn severity ranges from first-degree superficial burns (e.g., sunburn) to severe third- and fourth-degree burns (i.e., full-thickness injury). First- and second-degree burns regenerate normal skin and are painful, whereas third- and fourth-degree burns do not regenerate normal skin and are not painful. Topical treatment with antiseptic agents helps to prevent secondary infection of burned areas. The resuscitation phase of treatment is usually completed in the first twenty-four to seventy-two hours.

For extensive burns (i.e., greater than 50% body surface area) the second phase--initial excision and biological closure of the burned areas--is crucial to long-term survival. (28) In this phase, doctors attempt to surgically remove the bulk of the full-thickness burned skin and cover the burn wound (i.e., underlying region) with a suitable biological dressing before the burn wound colonizes or becomes infected by microbes. Occurrence of burn wound infection is a serious event that complicates treatment. Besides causing sloughing of biological coverings, burn wound infections allow microbial invasion into deeper tissues and the bloodstream, significantly increasing mortality. Successful excision and biological closure reduce infectious risk. The timing of excision and closure varies among surgeons, but the procedure usually begins, at the latest, by the end of the first week post-burn.

From a clinical standpoint, skin consists of two functional anatomic parts--the dermis and epidermis. The dermis, the innermost layer of skin, provides strength and flexibility, whereas the epidermis, the top layer of skin, serves as a vapor and bacterial barrier. (29) The epidermis continually regenerates itself from basal cells that reside next to the dermis. (30) A skin replacement covering can be fully classified by three different features: whether it is temporary or permanent; whether it substitutes for epidermis, dermis, or both; and whether it comes from a biologic or synthetic source. (31) Temporary coverings provide physiologic characteristics of skin, but possess only a finite life span of three to four weeks before requiring replacement. Temporary coverings currently include porcine xenografts, synthetic nylon membranes with a silastic outer layer, and allografts from tissue or organ donors. Allografts represent the standard by which all temporary coverings are measured. (32)

The gold standard for permanently covering full-thickness burns is the use of split-thickness autografts. (33) In lieu of autograft material, other permanent coverings include cultured epithelial cells and synthetic dermal coverings. (34) Epithelial transplants used alone to cover full-thickness wounds have a 50-70% success rate and less durability than autografts. (35) Synthetic dermal coverings promote growth of dermal structure and allow for later coverage with ultra-thin autografts.

From the facts and background information of Jennifer and Sydney's case, one may propose the likely course of hospital events leading up to the twins' court hearing. At the end of Jennifer's resuscitative phase, sometime between December 10th and December 12th, Jennifer's surgeon petitioned the hospital ethics committee to consider the appropriateness of harvesting skin from Sydney. He did so at this time because his attention turned to the excision and initial closure phase of treatment. Autografts were the covering of choice for third-degree burns, but Jennifer did not have enough viable skin remaining to cover her wounds. Isografts from Sydney, however, would be virtually identical to autografts from Jennifer, and using both would cover the bulk of Jennifer's burn wounds. Furthermore, this approach would entail the shortest recovery time and offer Jennifer the best potential long-term cosmetic result. The time interval for ethics committee review, coupled with the need to seek court approval, was too long in light of the pressing need for wound closure. Thus, the surgeon excised and initially closed Jennifer's burn wounds using allografts and porcine xenografts. The initial closure was probably completed between December 17th and December 20th. Moreover, the skin biopsy to culture skin epithelial cells may have been performed shortly after resuscitation was completed, between December 10th and December 12th. Although isografts were unavailable for initial closure, there would be another opportunity for their use when the time came for permanent closure of Jennifer's wounds. The temporary coverings would begin to slough after three or four weeks, just around the time the parents' petition was filed. Thus, Jennifer survived the initial wound closure without documented complications--a crucial step to prolonged survival.

At the hearing, Jennifer's surgeon testified that Jennifer had a 40-60% chance of survival without isografting. Her mortality risk would decrease to 10% with successful isografting. (36) As many as two or three harvesting procedures could be necessary to adequately cover the burn wound, with an expected engraftment rate of 90% (i.e., percentage of graft successfully functioning). The parents' attorney also informed the court that sheets of cultured epithelial cells for grafting were scheduled to arrive on January 9th--three days after the hearing date. (37) Information not before the court, but easily obtained from a computerized medical literature search, showed that the statistical mortality rate at other burn centers for burns similar to Jennifer's was nearly 20%. Further, cultured epithelial cell grafts had an engraftment rate of 50-70%, and they had somewhat less satisfactory long-term cosmetic and functional results compared to autografts. (38)

From an ethical viewpoint, assessment of the benefits, risks, and burdens of the surgical treatments yield different results for each girl. In Jennifer's situation, skin grafting had a definite benefit because it would reduce her risk of death and morbidity from her burn wounds. The reduced risk of death and morbidity outweighed the risk of harm associated with undergoing multiple staged grafting procedures. Moreover, the burdens Jennifer suffered as a result of the grafting procedures were justified in light of the physical and psychological benefits she gained from the procedures. Finally, Jennifer realized additional physiological benefits by using isografts harvested from Sydney, as such grafts were tantamount to using Jennifer's own skin. Of course, Jennifer had to undergo grafting procedures to implant a permanent covering anyway, but isografting greatly reduced the number of procedures that Jennifer needed.

In contrast, Sydney did not realize physiological benefits from skin harvesting. Any potential benefits for her would be psychological, but unpredictable. Sydney's risk of life-threatening complications from the skin harvesting procedures was extremely low. Sydney likely experienced, however, a few days of moderate acute pain, which required analgesics, and some disfigurement over the areas harvested. In these types of procedures, some psychological harm from the acute pain following the procedures is almost certain. But, the extent of additional harm from the potential emotional disturbance and social stigmatization associated with permanent cosmetic changes is unpredictable. …

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