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Role of a child advocate in the selection of donors for pediatric bone marrow transplantation
May 1981
TheJournalofPED1ATRICS
847
Role of a child advocate in the selection of donors for pediatric bone marrow transplantation Fredrie T. Scrota, M.D,,* Charles S. August , M.D., Alice Tuohy O'Shea, Esq., William T. Woodward, Jr., Esq., and Penelope A. Koch, M.D., Philadelphia, Pa.
FROM
A MEDICAL-LEGAL
POINT
OF VI[EW,
pediatric
bone marrow transplantation may be complicated when the sibling donor, as well as the recipient, is a minor. A conflict of interest arises when parents are asked to give informed consent for both donor and recipien t . Strongly motivated to cure their sick child, parents might not adequately consider the interests of the donor, their healthy child, who must undergo the risk of anesthesia and the pain Of marrow harvest. In 1976, prior to beginning a bone marrow transplantation program at the Children's Hospital of Philadelphia, the transplant physicians requested the Administrative Judge of the Philadelphia Family Court to assist in developing a judicial procedure optimally responsive to the medical and legal interests of those involved.
making this important decision lay with the parents. The judge felt that the Court's duty should be to oversee parental consent and ensure that it was given only after careful consideration of the interests of both children. (2) Because of the urgency which frequently surrounds bone marrow transplantation, the legal process needed to be expedient, requiring a minimum number of People to testify, and judges to be familiar with the medical and legal issues involved. (3) The decision-making process needed to be structured to give the court maximum assurance that the decision to transplant was made by all parties freely and without coercion.
See related articles, pp. 759 and 842.
From the Bone Marrow Transplant Unit, Children's Hospital of Philadelphia, The Department of Pediatrics, University of Pennsylvania School of Medicine and the Child Advocacy Unit, Family Court. Supported in part by Cancer Center grant CA 14489 from the National Institutes of Health and the Eagles Fly for Leukemia Fund," the donors" were studied in the Clinical Studies Unit Of the Children's Hospital of Philadelphia, which is supported by grant RR O0240 from toe General Clinical Research Center Program of the Division of Research Resources, National Institutes" of Health. Reprint address: The Children"s Hospital of Philadelphia, Division of Oncology, 34th & Civic Center Blvd., Philadelphia, PA 19104.
The Child Advocacy Unit of the Defender Association of Philadelphia was established in 1974 following legislation that provided that all children were entitled to legal representatio n . Appointment of such counsel is made by the judge whenever there is a divergence of interest b e t w e e n parent and child. The Child Advocate has become involved in cases of child abuse, mental health and retardation commitment, custody, adoption, and paternity suits. The Philadelphia Family Court called upon the Child Advocate to be advisor to the Court and to review systematically the nature of the informed consent given by both the parents and the prospective bone marrow donor. In practice, whenever a minor donor is involved in a potential bone marrow transplant, a petition is filled with the Family Court Division of the Court of Common Pleas by the hospital's legal counsel, requesting a determination of whether the parents can give a legally binding consent on behalf of their child. Such a determination would perm!t the physicians to perform the transplant without liability for failing to obtain consent on behalf o f the donor. The Court ruling was not to be, however, a release
0022-3476/81050847 + 04500.40/0 9 I981 The C. V. Mosby Co.
VoL 98, No. 5, pp. 847-850
DEVELOPMENT OF PROCEDURE Several factors were considered. (1) Since the recipient might benefit from a bone marrow transplant, parental consent was deemed to be valid. However, no court has accepted the principle that consent of parents to nontherapeutic treatment of minors is legally sufficient. In spite of this, the Court felt that the primary responsibility for
848
Serota et al.
The Journal o f Pediatrics May 1981
Table. Bone marrow transplantation (BMT): Family preparation procedure I. Medical assessment of potential recipient A. Confirmation of patient's diagnosis B. Review of previous treatment C. Assessment of patient's current physical and psychologic status D. Consideration of alternative therapies II. Exploratio n of transplantation feasibility A. Histocompatibility testing of family members and selection of most appropriate donor B. Physician!s explanation of BMT, its attendant risks an~t potential benefits C. Review of informed consent documents IIi. Evaluation and preparation of donor A. Discussion of marrow harvest with donor: Description of the procedure, its rationale and attendant risks B. Complete medical evaluation (history, physical examination, laboratory tests) by transplant physician and an independent pediatrician to establish donor's fitness to donate marrow C. Assessment of psychologic fitness to donate marrow by the transplant psyc,hiatrist and an independent psychiatrist D. Other medical consultations when inclicated IV. Peer review of procedure A. Cons!dtation b3( an independent pediatric hematologist to confirm that BM T is medically indicated B. Evaluation by the BMT Review Comm!!tee (which includes at least tWOindependent medical staff members, transplant physicians, nurses, social worker, child psychiatrist, and lay persons) V. Legal measures A. Submission of a detailed medical summary (affidavit) to the Court by the attending physician B. Signing of consent forms by parents, physician, donor and recipient C. "Mini-hearing" conducted by the Child Advocate 1. Review of medical and psychosoc!al summaries 2. Determination that risks to donor are minimal (vide supra) 3. Interview of donor, parents to review level of understanding of and enthusiasm for BMT 4. Submission of summary and recommendations to the Family Court
from responsibility for the procedure (i.e., malpractice or negligence actions). In a departure from adversary proceedings associated with the appointment of a guardian ad litem, the Administrative Judge of the Family Court assigns the case to a Child Advocate in the Public Defender's office. The Advocate is instructed only to investigate and advise the court, and is not empowered to consent to the transplant on behalf of the donor. The family is prepared by the transplant team for the procedure, as outlined in the Table. The Child Advocate, prior to the judicial hearing, visits the Children's Hospital of Philadelphia, meets with members of the transplant team, reviews relevant med!cal, social, and psychologic reports, as well as the informed consent documents, and the n interviews ,the family whose children are to undergo marrow transplantation. The Child Advocate seeks to determine that (1) the attending physicians have concluded that no treatment other than a bone marrow transplant holds m o r e promise of curing the patient's disease; (2) the risks to the donor are minimal; (3) the donor is eager t~ help his/her sibling; (4) the parents are fully informe d about the risks tothe donor; (5) the parents' consent to the procedure on behalf of the donor !s fully and voluntarily given; and (6) the donor
willingly join s in this consent. The Advocate then recommends that the court find the consent given by the pax-ents on behalf of the minor donor to be valid and legally binding. For the first bone marrow transplant performed at the Children's Hospital of Philadelphia, the Administrative Judge of the Family Court held a hearing in his chambers, then the judge ruled that the parental consent was valid, and thereby authorized the proposed bone marrow transplantatio n . The time which had elapsed between filing the petit!on and the judge's final decision was nine days. Since the first hearing, the Court has decided to hold formal hearings only if there are questions raised by the Child Advocate's report or if, on review, the Court otherwise questions the recommendations of the Child Advocate. At present, the Child Advocate's investigatio n takes the form of a "mini hearing" held in the hospital and lasting one to two hours, which takes place immediately after the parents sign the informed consent document. The entire legal process requires two to three days and is accomplished while the patient is receiving his pretransplant medical evaluation. As of N o v e m b e r 1, 1980, this procedure has been effectively utilized on behalf of 20 minor donors. No transplant has been
Volume 98 Number 5
refused owing either to donor reluctance or to inadequately informed consent. DISCUSSION The National Commission for the protection of Human Subjects of Biomedical and Behavorial Research was established in 1974 to develop ethical guidelines for the conduct of research involving human subjects. The Commission's report on research involving Children was pubfished early in 1978.i' ~ The Commission found that "i"esearch involving children is important for the health and well-being of children" but recommended that "such research be Conducted only if it is scientifically sound, will contribute significantly to generalizable knowledge, risks are minimized, and the research be performed in conneCtion with necessary diagnosis a n d treatment whenever possible. Adequate provisions must be made to obtain the assent of the chiid, and the consent of the parents or guardians." In the instance when there is no direct benefit to the minor, specifically a case involving donation of bone marrow for a proposed bone marrow transplant, the Commission cited Nathan vs. Farinelli, :~'~ and the necessity, but not necessarily the sufficiency, of parental consent. The requirement that consent be obtained before a patient is given medical treatment that may benefit the individual alone is a well-established principal in common law? In fact, physicians who practice in the absence of consent are subject to liability for battery. 6 Children, generally, are not competent to consent tO medical treatment2 In the typical case in which medical treatment is likely to benefit the child, his incompetence to consent usually is not a problem, s~nde his parents are empowered to do so? Hovdever, parents have the power to make critical decisions affecting the welfare of their child only in those contexts in which they are doing what is "best" for the child. Under its parens patriae power, the state has traditionally intervened in the child-parent relationship when the parents were found not to be acting in their child's best interest. 9 Courts have used such power to deprive parents of custody of their child in insiances of neglect or abusive treatment, when parents have refused medieal treatment on religious grounds, as well as various other medical procedures to cure nonlife-threatening problems2 Clearly, a transplant involving minor siblings creates an exceptional situation which amplifies these ~issues. Baron et aP reviewed three alternative legal tests which which might be used by the courts. Under the first, the "best interests test," the Court directly authorizes the transplant if participation in the operation will benefit the prospective donor. Since a transplant donor does not
Role o f child advocate in bone marrow transplantation
849
benefit physically from the transplant operation, the decision in this instance is based on evidence that psychobenefits to the donor as a result of the procedure outweigh possible physical harm. For example, in a Kentucky case, S t r u n k vs. Strunk, the Court authorized a kidney transplant from a mentally retarded 27-year-old person to his brother because of psychiatric evidence that the death of the brother would have a traumatic effect upon the donor. 1~However, in N a t h a n vs. Farinelli, which involved a 6-year-old donor for a bone marrow transplant, the Massachusetts Court refused to apply the best interests test because of the Speculative nature of the psychiatric testimqny, Under the second test, rather than directly deciding Whether the transplant should proceed, the Court saw its duty as one of reviewing the parents' consideration of the relative risks and benefits to both children, and their resulting decision. In Nathan vs Faiqnelli, the court preferred to treat the parents as having primary responsibility for deciding whether a child should donate tissue to a sibling, and to permit the parents to make the decision after considering the interests of both children. The Court, however, considered it necessary to review the parents' decision "because of the built-in conflict of the parents' position." The Court's review of the parental decision demonstrated that the Court did not consider its primary duty tO protect the prospective donor, but rather to ovei'see the informed consent. In many instances, as was the case in Nathan vs Farinelli, a guardian ad litem has been appointed to represent the minor donor. However, it has been argued" that such guardians frequently have not fully represented the interests Of the prospective donors. To begin with, in several instances, physicians, likely to be more sensitive tO the medical aspects of the operatiort than to the donor's interests, were appointed: T M 1~ In fact, these physicians Were employed by the hospitals seeking authorization to perform the transplants, thus creating a further conflict of interest. In addition, in most instances guardians have functioned as mediators rather than as donor advocates. An exception was the guardian in Nathan vs. Farinelli, who refused to instruct the Court as to whether he believed the donation would be best for the prospective minor donor, contending that it was the Court's respOnsibility to make the critical, factual, and legal determinations based upon a record fully developed by adversaries. This guardian ad litem, rather than answering the question of whether the procedure was in the donor's interests, presented the evidence and argiaments opposing the position taken by the hospital and the parents. Lastly, most guardians have not been effective because they are usually given insufficient time to develop an adversary
iogic
850
Serota et al.
case on behalf of the donor (ofien less than five days) and may not have developed expertise in this area. The medical situation simply does not often allow the luxury of a long period for trial preparation. As a third alternative, the Court might determine whether the minor is sufficiently mature that his own consent to the traxtsplant operation may be deemed valid. For example, in Rappeport vs. Stott, the Massachusetts Supreme Court approved a minor's donation of bone marrow specifically because the 17-year-old donor was "capable of consenting to the proposed procedure. ''~ However, such an approach would obtain in very few cases. Clearly, a procedure needed to be developed that (1) adequately considered the interests of the prospective minor donor, (2) utilized an impartial advocate, who might eventually become experienced both in the legal aspects and logistic requirements of the transplant process, (3) was expeditious, because of the time pressures created by the critical illnesses of the potential x~ecipients, and (4) did not impose additional emotional burden on the family already stressed by serious illness. The procedure illustrated above, utilizing the Child Advocate of the Public Defenders' office, satisfies these criteria. Both children, as well as parents, receive full legal consideration without resorting to an adversary procedure. The parents are permitted to give informed consent for both children, yet are spared a potential conflict of interest by the Court's intervention.
The Journal of Pediatrics May 1981
We are grateful to Catherine Field and Regina Gibson for secretarial assistance.
REFERENCES 1. Federal Register 43:2084, (Jan. 13) 1978. 2. Jonsen AR: Research involving children: Recommendations of the National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, Pediatrics 62:131, 1978. 3. Nathan vs. Farinelti, Eq No 74-87 (Mass July 3, 1974). 4. Baron CH, Botsford M, and Cole GF: Live organ and tissue transplants from minor donors in Massachusetts, Boston Univ Law Rev 55:159, 1975. 5. Prosser W: Law of torts s 9, 18 (4th Ed, 1971). 6. Fraser GH, and Chadsey PD: Informed consent in malpractice cases, 6 Williamette L.J. 183 (1970). 7. Bonner vs Moran 126 F-2d 121 (D.C. App. 1941). 8. Prosser W: Law of torts.s 18 (4th Ed, 1971). 9. Paulsen MG: The legal framework for child protection, 66 Colum L Rev 679, 693-703 (1966). 10. Strunk vs Strunk, 445 S.W. 2d. 145 (Ky 1969). 11. Camitta vs Fager, Eq. No 73-17I (Mass. Sept. 5, 1973). 12. Camitta vs Martinez, Eq. No 73-158 (Mass. Aug. 23, 1973). i3. Camitta vs O'Mealia, Eq. No 73-86 (Mass. Apr. 25, 1973). 14. Rappeport vs Stott, Civil No. J. 74-57 (Mass. Aug. 28, 1974). 15. Levine MD, Camitta BM, Nathan DG, and Curran WJ: The medical ethics of bone marrow transplantation in childhood, J PEDIATg86:145, 1975.
TheJournalofPED1ATRICS
847
Role of a child advocate in the selection of donors for pediatric bone marrow transplantation Fredrie T. Scrota, M.D,,* Charles S. August , M.D., Alice Tuohy O'Shea, Esq., William T. Woodward, Jr., Esq., and Penelope A. Koch, M.D., Philadelphia, Pa.
FROM
A MEDICAL-LEGAL
POINT
OF VI[EW,
pediatric
bone marrow transplantation may be complicated when the sibling donor, as well as the recipient, is a minor. A conflict of interest arises when parents are asked to give informed consent for both donor and recipien t . Strongly motivated to cure their sick child, parents might not adequately consider the interests of the donor, their healthy child, who must undergo the risk of anesthesia and the pain Of marrow harvest. In 1976, prior to beginning a bone marrow transplantation program at the Children's Hospital of Philadelphia, the transplant physicians requested the Administrative Judge of the Philadelphia Family Court to assist in developing a judicial procedure optimally responsive to the medical and legal interests of those involved.
making this important decision lay with the parents. The judge felt that the Court's duty should be to oversee parental consent and ensure that it was given only after careful consideration of the interests of both children. (2) Because of the urgency which frequently surrounds bone marrow transplantation, the legal process needed to be expedient, requiring a minimum number of People to testify, and judges to be familiar with the medical and legal issues involved. (3) The decision-making process needed to be structured to give the court maximum assurance that the decision to transplant was made by all parties freely and without coercion.
See related articles, pp. 759 and 842.
From the Bone Marrow Transplant Unit, Children's Hospital of Philadelphia, The Department of Pediatrics, University of Pennsylvania School of Medicine and the Child Advocacy Unit, Family Court. Supported in part by Cancer Center grant CA 14489 from the National Institutes of Health and the Eagles Fly for Leukemia Fund," the donors" were studied in the Clinical Studies Unit Of the Children's Hospital of Philadelphia, which is supported by grant RR O0240 from toe General Clinical Research Center Program of the Division of Research Resources, National Institutes" of Health. Reprint address: The Children"s Hospital of Philadelphia, Division of Oncology, 34th & Civic Center Blvd., Philadelphia, PA 19104.
The Child Advocacy Unit of the Defender Association of Philadelphia was established in 1974 following legislation that provided that all children were entitled to legal representatio n . Appointment of such counsel is made by the judge whenever there is a divergence of interest b e t w e e n parent and child. The Child Advocate has become involved in cases of child abuse, mental health and retardation commitment, custody, adoption, and paternity suits. The Philadelphia Family Court called upon the Child Advocate to be advisor to the Court and to review systematically the nature of the informed consent given by both the parents and the prospective bone marrow donor. In practice, whenever a minor donor is involved in a potential bone marrow transplant, a petition is filled with the Family Court Division of the Court of Common Pleas by the hospital's legal counsel, requesting a determination of whether the parents can give a legally binding consent on behalf of their child. Such a determination would perm!t the physicians to perform the transplant without liability for failing to obtain consent on behalf o f the donor. The Court ruling was not to be, however, a release
0022-3476/81050847 + 04500.40/0 9 I981 The C. V. Mosby Co.
VoL 98, No. 5, pp. 847-850
DEVELOPMENT OF PROCEDURE Several factors were considered. (1) Since the recipient might benefit from a bone marrow transplant, parental consent was deemed to be valid. However, no court has accepted the principle that consent of parents to nontherapeutic treatment of minors is legally sufficient. In spite of this, the Court felt that the primary responsibility for
848
Serota et al.
The Journal o f Pediatrics May 1981
Table. Bone marrow transplantation (BMT): Family preparation procedure I. Medical assessment of potential recipient A. Confirmation of patient's diagnosis B. Review of previous treatment C. Assessment of patient's current physical and psychologic status D. Consideration of alternative therapies II. Exploratio n of transplantation feasibility A. Histocompatibility testing of family members and selection of most appropriate donor B. Physician!s explanation of BMT, its attendant risks an~t potential benefits C. Review of informed consent documents IIi. Evaluation and preparation of donor A. Discussion of marrow harvest with donor: Description of the procedure, its rationale and attendant risks B. Complete medical evaluation (history, physical examination, laboratory tests) by transplant physician and an independent pediatrician to establish donor's fitness to donate marrow C. Assessment of psychologic fitness to donate marrow by the transplant psyc,hiatrist and an independent psychiatrist D. Other medical consultations when inclicated IV. Peer review of procedure A. Cons!dtation b3( an independent pediatric hematologist to confirm that BM T is medically indicated B. Evaluation by the BMT Review Comm!!tee (which includes at least tWOindependent medical staff members, transplant physicians, nurses, social worker, child psychiatrist, and lay persons) V. Legal measures A. Submission of a detailed medical summary (affidavit) to the Court by the attending physician B. Signing of consent forms by parents, physician, donor and recipient C. "Mini-hearing" conducted by the Child Advocate 1. Review of medical and psychosoc!al summaries 2. Determination that risks to donor are minimal (vide supra) 3. Interview of donor, parents to review level of understanding of and enthusiasm for BMT 4. Submission of summary and recommendations to the Family Court
from responsibility for the procedure (i.e., malpractice or negligence actions). In a departure from adversary proceedings associated with the appointment of a guardian ad litem, the Administrative Judge of the Family Court assigns the case to a Child Advocate in the Public Defender's office. The Advocate is instructed only to investigate and advise the court, and is not empowered to consent to the transplant on behalf of the donor. The family is prepared by the transplant team for the procedure, as outlined in the Table. The Child Advocate, prior to the judicial hearing, visits the Children's Hospital of Philadelphia, meets with members of the transplant team, reviews relevant med!cal, social, and psychologic reports, as well as the informed consent documents, and the n interviews ,the family whose children are to undergo marrow transplantation. The Child Advocate seeks to determine that (1) the attending physicians have concluded that no treatment other than a bone marrow transplant holds m o r e promise of curing the patient's disease; (2) the risks to the donor are minimal; (3) the donor is eager t~ help his/her sibling; (4) the parents are fully informe d about the risks tothe donor; (5) the parents' consent to the procedure on behalf of the donor !s fully and voluntarily given; and (6) the donor
willingly join s in this consent. The Advocate then recommends that the court find the consent given by the pax-ents on behalf of the minor donor to be valid and legally binding. For the first bone marrow transplant performed at the Children's Hospital of Philadelphia, the Administrative Judge of the Family Court held a hearing in his chambers, then the judge ruled that the parental consent was valid, and thereby authorized the proposed bone marrow transplantatio n . The time which had elapsed between filing the petit!on and the judge's final decision was nine days. Since the first hearing, the Court has decided to hold formal hearings only if there are questions raised by the Child Advocate's report or if, on review, the Court otherwise questions the recommendations of the Child Advocate. At present, the Child Advocate's investigatio n takes the form of a "mini hearing" held in the hospital and lasting one to two hours, which takes place immediately after the parents sign the informed consent document. The entire legal process requires two to three days and is accomplished while the patient is receiving his pretransplant medical evaluation. As of N o v e m b e r 1, 1980, this procedure has been effectively utilized on behalf of 20 minor donors. No transplant has been
Volume 98 Number 5
refused owing either to donor reluctance or to inadequately informed consent. DISCUSSION The National Commission for the protection of Human Subjects of Biomedical and Behavorial Research was established in 1974 to develop ethical guidelines for the conduct of research involving human subjects. The Commission's report on research involving Children was pubfished early in 1978.i' ~ The Commission found that "i"esearch involving children is important for the health and well-being of children" but recommended that "such research be Conducted only if it is scientifically sound, will contribute significantly to generalizable knowledge, risks are minimized, and the research be performed in conneCtion with necessary diagnosis a n d treatment whenever possible. Adequate provisions must be made to obtain the assent of the chiid, and the consent of the parents or guardians." In the instance when there is no direct benefit to the minor, specifically a case involving donation of bone marrow for a proposed bone marrow transplant, the Commission cited Nathan vs. Farinelli, :~'~ and the necessity, but not necessarily the sufficiency, of parental consent. The requirement that consent be obtained before a patient is given medical treatment that may benefit the individual alone is a well-established principal in common law? In fact, physicians who practice in the absence of consent are subject to liability for battery. 6 Children, generally, are not competent to consent tO medical treatment2 In the typical case in which medical treatment is likely to benefit the child, his incompetence to consent usually is not a problem, s~nde his parents are empowered to do so? Hovdever, parents have the power to make critical decisions affecting the welfare of their child only in those contexts in which they are doing what is "best" for the child. Under its parens patriae power, the state has traditionally intervened in the child-parent relationship when the parents were found not to be acting in their child's best interest. 9 Courts have used such power to deprive parents of custody of their child in insiances of neglect or abusive treatment, when parents have refused medieal treatment on religious grounds, as well as various other medical procedures to cure nonlife-threatening problems2 Clearly, a transplant involving minor siblings creates an exceptional situation which amplifies these ~issues. Baron et aP reviewed three alternative legal tests which which might be used by the courts. Under the first, the "best interests test," the Court directly authorizes the transplant if participation in the operation will benefit the prospective donor. Since a transplant donor does not
Role o f child advocate in bone marrow transplantation
849
benefit physically from the transplant operation, the decision in this instance is based on evidence that psychobenefits to the donor as a result of the procedure outweigh possible physical harm. For example, in a Kentucky case, S t r u n k vs. Strunk, the Court authorized a kidney transplant from a mentally retarded 27-year-old person to his brother because of psychiatric evidence that the death of the brother would have a traumatic effect upon the donor. 1~However, in N a t h a n vs. Farinelli, which involved a 6-year-old donor for a bone marrow transplant, the Massachusetts Court refused to apply the best interests test because of the Speculative nature of the psychiatric testimqny, Under the second test, rather than directly deciding Whether the transplant should proceed, the Court saw its duty as one of reviewing the parents' consideration of the relative risks and benefits to both children, and their resulting decision. In Nathan vs Faiqnelli, the court preferred to treat the parents as having primary responsibility for deciding whether a child should donate tissue to a sibling, and to permit the parents to make the decision after considering the interests of both children. The Court, however, considered it necessary to review the parents' decision "because of the built-in conflict of the parents' position." The Court's review of the parental decision demonstrated that the Court did not consider its primary duty tO protect the prospective donor, but rather to ovei'see the informed consent. In many instances, as was the case in Nathan vs Farinelli, a guardian ad litem has been appointed to represent the minor donor. However, it has been argued" that such guardians frequently have not fully represented the interests Of the prospective donors. To begin with, in several instances, physicians, likely to be more sensitive tO the medical aspects of the operatiort than to the donor's interests, were appointed: T M 1~ In fact, these physicians Were employed by the hospitals seeking authorization to perform the transplants, thus creating a further conflict of interest. In addition, in most instances guardians have functioned as mediators rather than as donor advocates. An exception was the guardian in Nathan vs. Farinelli, who refused to instruct the Court as to whether he believed the donation would be best for the prospective minor donor, contending that it was the Court's respOnsibility to make the critical, factual, and legal determinations based upon a record fully developed by adversaries. This guardian ad litem, rather than answering the question of whether the procedure was in the donor's interests, presented the evidence and argiaments opposing the position taken by the hospital and the parents. Lastly, most guardians have not been effective because they are usually given insufficient time to develop an adversary
iogic
850
Serota et al.
case on behalf of the donor (ofien less than five days) and may not have developed expertise in this area. The medical situation simply does not often allow the luxury of a long period for trial preparation. As a third alternative, the Court might determine whether the minor is sufficiently mature that his own consent to the traxtsplant operation may be deemed valid. For example, in Rappeport vs. Stott, the Massachusetts Supreme Court approved a minor's donation of bone marrow specifically because the 17-year-old donor was "capable of consenting to the proposed procedure. ''~ However, such an approach would obtain in very few cases. Clearly, a procedure needed to be developed that (1) adequately considered the interests of the prospective minor donor, (2) utilized an impartial advocate, who might eventually become experienced both in the legal aspects and logistic requirements of the transplant process, (3) was expeditious, because of the time pressures created by the critical illnesses of the potential x~ecipients, and (4) did not impose additional emotional burden on the family already stressed by serious illness. The procedure illustrated above, utilizing the Child Advocate of the Public Defenders' office, satisfies these criteria. Both children, as well as parents, receive full legal consideration without resorting to an adversary procedure. The parents are permitted to give informed consent for both children, yet are spared a potential conflict of interest by the Court's intervention.
The Journal of Pediatrics May 1981
We are grateful to Catherine Field and Regina Gibson for secretarial assistance.
REFERENCES 1. Federal Register 43:2084, (Jan. 13) 1978. 2. Jonsen AR: Research involving children: Recommendations of the National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, Pediatrics 62:131, 1978. 3. Nathan vs. Farinelti, Eq No 74-87 (Mass July 3, 1974). 4. Baron CH, Botsford M, and Cole GF: Live organ and tissue transplants from minor donors in Massachusetts, Boston Univ Law Rev 55:159, 1975. 5. Prosser W: Law of torts s 9, 18 (4th Ed, 1971). 6. Fraser GH, and Chadsey PD: Informed consent in malpractice cases, 6 Williamette L.J. 183 (1970). 7. Bonner vs Moran 126 F-2d 121 (D.C. App. 1941). 8. Prosser W: Law of torts.s 18 (4th Ed, 1971). 9. Paulsen MG: The legal framework for child protection, 66 Colum L Rev 679, 693-703 (1966). 10. Strunk vs Strunk, 445 S.W. 2d. 145 (Ky 1969). 11. Camitta vs Fager, Eq. No 73-17I (Mass. Sept. 5, 1973). 12. Camitta vs Martinez, Eq. No 73-158 (Mass. Aug. 23, 1973). i3. Camitta vs O'Mealia, Eq. No 73-86 (Mass. Apr. 25, 1973). 14. Rappeport vs Stott, Civil No. J. 74-57 (Mass. Aug. 28, 1974). 15. Levine MD, Camitta BM, Nathan DG, and Curran WJ: The medical ethics of bone marrow transplantation in childhood, J PEDIATg86:145, 1975.