Organ transplantation has become an accepted therapeutic option for a variety of life- threatening conditions over the past few decades and offers hope of increased longevity and quality of life to many (Sudan et al., 2004; Vennarecci et al., 2000). Success rates post-transplant for infants, children, and adolescents have improved over the years in response to improved surgical techniques, better immunosuppressive drugs, and new antimicrobial agents. Yet despite tremendous success rates in transplant procedures, infants and children continue to die while waiting for organs (Colombani et al., 2003; Magee et al., 2004). The number of transplants performed annually in Canada is simply limited by the critical shortage of appropriate sized organs available.
According to the Canadian Institute for Health Information (CIHI), a total of 734 children under age 19 received organ transplants between the years 1999-2003 (Canadian Organ Replacement Registry [CORR], 2004). Of this total, 21% of the transplants took place in children between birth to 1 year of age, with the liver and heart being the predominant organs transplanted. Major causes of organ failure in this group were due to congenital cardiac anomalies and primary biliary atresia.
Although the success rates for solid organ transplantation are statistically very good, these procedures are not risk free, and the children require lifelong medical management. While some children can be maintained for periods of time while waiting for transplant through the use of dialysis, total parenteral nutrition (TPN), or surgical procedures such as the Norwood, other children cannot survive without organ replacement. Coping with the effects of a transplant and the ongoing uncertainty can be a source of significant stress for children and families (LoBionda-Wood, Williams, & Ghee, 2004). In view of the state of the art, one question that arises is 'Should parents be obliged to consent to having their child undergo a transplant if considered medically necessary by a duly qualified medical practitioner, or should families also be offered the alternative--forgoing 'curative' treatment and choosing palliative care instead?'
One Canadian example of such a situation involved a 10-month-old First Nations infant with biliary atresia named K'aila Paulette (Canadian Broadcasting Corporation [CBC], 1990; Saskatchewan [Minister of Social Services] vs. P.[F.], 1990; Sneiderman, Irvine, & Osborne, 2003). K'aila and his family lived a traditional lifestyle in a remote northern community. The parents brought their son to a tertiary care centre in the south for evaluation when they noticed some bruising over the child's body. The consultant pediatric gastroenterologist informed the parents that their son's only chance of survival would be to receive a liver transplant. At that time, data indicated a 70%-75% chance of survival in the first year post-transplant, dropping to 60-65% after 5 years. The parents were a well-informed, articulate couple that understood the potential benefits and risks of their son undergoing a transplant (assuming an organ became available).
After much thought and soul searching, the parents made the decision to forgo the transplant option and allow their son to live out the rest of his natural life in peace. Their decision was based upon their spiritual beliefs, which precluded introducing a part of another person's body into the body of their son. From their perspective, organ transplantation violated the working of nature.
Across North America there is great diversity in Aboriginal culture, language, spiritual beliefs, and practices (Ellerby, McKenzie, McKay, Gariepy, & Kaufert, 2000; Neely, 1997). Thus, one must be cautious never to make generalizations but to consider each person and family on an individual basis. However, while each North American Indian nation or tribe has its own belief system regarding health and illness, many Aboriginal people subscribe to a holistic concept of health that stresses harmony with nature and balance (Neely, 1997; Spector, 2004). Acceptance of death is a common aspect of Aboriginal relationships with the Creator and maintenance of quality of life versus pursuit of a cure is highly valued amongst many Aboriginal people. On spiritual grounds, K'aila's father was uncomfortable with the concept of a transplant:
My misgivings came from a recognition that in this life our physical being is intimately connected with our spiritual being, and what's more, putting part of somebody else from another body that had another spiritual identity connected with it, putting that into his body, just the possible implications of that were really disturbing to me.
As well, the parents had serious concerns about the potential long-term effects of the immunosuppressive drugs on their child and took the view that his body would be 'like a war zone' for the rest of his life.
All that we have here on this Mother Earth is a blessing and a gift of the Creator. To me there is a fundamental order that I strongly believe in ... if the Creator had meant it to be that we can take another liver and put it into another person's body and there's no complications whatsoever: nothing whatsoever, you sew up the persons and everything is all right, everything checks out--but that's not the case.
The pediatric gastroenterologist consulted by the parents believed that the parents' decision to deny their son the possibility of a liver transplant was unreasonable. He notified the local child welfare agency, and the department of social services petitioned the court to temporarily apprehend the child so that consent could be obtained for a transplant. The parents took their two children and fled the jurisdiction until the matter could be settled in court (Saskatchewan (Minister of Social Services) vs. P.(F.), 1990; Sneiderman et al., 2003).
A judge heard testimony from both the parents of K'aila as well as several specialist physicians. Despite the initial physician's determination that a liver transplant was in the child's best interest, all expert witnesses did not support this. Other testifying physicians stated that they could not fault the decision of the parents, given the uncertain course of the surgery as well as the potential severe and long-term effects of the necessary immunosuppressive drugs. The judge, therefore, denied the petition of the social services agency, and the parents returned home with their children. K'aila died peacefully in his mother's arms 6 weeks after this ruling.
Must All Parents Agree to Transplant Procedure?
Because the ability to perform transplants exists, does this mean that all parents or guardians must agree to such procedures? Who should be making such choices on behalf of children - their parents, members of the health care team, society at large, or the courts? Are such decisions not a private matter? How can one determine what is in the 'best interests' of an individual child when a child is part of a larger family system? If we as a society truly wish to promote and show respect for autonomy, then the medical establishment must also be willing to allow that some parents will make choices that the health professionals would not make for themselves. This is complex because at times it may be the health practitioners who wish to continue aggressive care; at other times it may be the parents insisting on care with no ability to change the prognosis. Herein lies the conflict between the principles of autonomy and beneficence--the desire to empower families and show respect for their values yet at the same time be advocates for the child.
While mentally competent adults and mature minors have the right to refuse recommended medical treatment, child protection laws have stated that parents of infants and children must not be allowed to deprive their offspring of lifesaving treatments. This illustrates the tension between law and ethics. What is essential in every case is that parents have the opportunity to be provided with all information, including the risks and benefits of aggressive treatment versus palliative care and every available alternative, in order that they may make a truly informed consent or refusal of treatment for their child. This must include the opportunity to forgo organ transplantation surgery and allow children to die peacefully surrounded by those who love them.
In the case of K'aila, the infant's quality of his predictably short life on earth was valued more greatly than a life of an unknown quantity. The long-term success of any transplant procedure only begins with the surgery itself. Ultimately, the burden of care and success post-transplant falls upon the parents and their ability to cope with years of medical management and uncertainty. For these parents, the ability to spend quality time at home with their child outweighed the desire to spend a lifetime fighting off death.
Canadian Broadcasting Corporation (CBC). (1990). Man alive: A choice for K'aila. Video.
Canadian Organ Replacement Registry (CORR), Canadian Institute for Health Information (CIHI). (2004). http://secure.cihi.ca/cihiweb/dispPage.jsp?cwpage=RC_4_E
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Saskatchewan (Minister of Social Services) vs. P. (F.), 1990 CarswellSask 159, 69 D.L.R. (4th) 134,  4 W.W.R. 748, 83 Sask. R.161 (Prov. Ct.)
Spector, R. (2004). Cultural diversity in health and illness (6th ed.). New Jersey: Pearson Prentice Hall.
Sneiderman, B., Irvine, J., & Osborne, R (2003). Canadian medical law (3rd ed.). Toronto: Carswell.
Sudan, D., Horslen, S., Botha, J., Grant, W., Torres, C., Shaw, B., & Langnas, A. (2004). Quality of life after pediatric intestinal transplantation: The perception of pediatric recipients and their parents. American Journal of Transplantation, 4, 407-413.
Vennarecci, G., Kato, T., Misiakos, P., Bakonyi Neto, A., Verzaro, R., Pinna, A., et al. (2000). Intestinal transplantation for short gut syndrome attributable to necrotizing enterocolitis. Pediatrics, 105(2).
Carla Shapiro, MN, RN, is Instructor in the Faculty of Nursing, University of Manitoba, Winnipeg, Canada.