PEDIATRICS Vol. 120 No. 6 December 2007, pp. 1357-1358 (doi:10.1542/peds.2007-1458)
COMMENTARY |
An Adolescent's Refusal of Medical Treatment: Implications of the Abraham Cheerix Case
Department of Pediatrics, Yale University School of Medicine, New Haven, Connecticut
Earlier this year lawmakers in Virginia passed what has come to be known as "Abraham's Law," which was precipitated by the case of a 15-year-old boy with Hodgkin's disease named Starchild Abraham Cheerix. Pediatricians should be aware of the law, which other states may choose to emulate, and its potential implications for their practice.
Abraham and his parents refused the additional chemotherapy recommended by his physicians at a children's hospital because of the adverse effects he had suffered previously. They chose instead to use prayer and an herbal remedy and, as a result, were threatened by the court with possible loss of custody. The family brought their story to the media, and a great deal of support arose for the family's right to make this decision without state interference. In the end, a compromise was reached. The parents retained custody, and Abraham underwent herbal treatments along with radiation therapy (but no chemotherapy) provided by a board-certified oncologist. At the time of this writing, he is 16 years old and, by his own report, feeling well.
Largely as a result of this case, a law was passed that states that parents of a child at least 14 years old with a life-threatening condition could refuse medically recommended treatment (ie, it would not be considered neglect) provided (1) the parents and child made the decision jointly, (2) the child is sufficiently mature to have an informed opinion on the treatment, (3) other treatments have been considered, and (4) they believe in good faith that their choice is in the child's best interest.1 Although there seems to be room for a judge to determine that a child is not sufficiently mature to understand, the law essentially opens the door for a 14-year-old with a life-threatening illness to be given an untested treatment, or prayer alone, in place of treatment with proven efficacy.
The rights of the family were often invoked as an argument for allowing the refusal. Parents surely have a right to raise their children as they see fit, but it is not unlimited. If it were, it could lead to the unacceptable conclusion, for example, that we must, in at least some cases, accept parental refusal of antibiotics for a small child with bacterial sepsis. Their right to decide for their child is not, and should not be, unlimited. Specifically, it does not necessarily include the right to refuse potentially life-saving treatment.2,3 Choosing an untested herbal remedy for a fatal illness over a treatment with perhaps a 90% chance of success should not fall within the limits of parental rights.
What about the adolescent's right to refuse? Pediatricians have long recognized that some adolescents have adequate decision-making capacity and, hence, should have the same right to make autonomous medical decisions that adults enjoy, as reflected in the mature-minor doctrine.4 One could argue that a mature adolescent should then have the right to refuse even potentially life-saving treatments as well. However, in agreeing with parents to refuse treatment, it is not clear how autonomous a decision truly is. The decisions of even the most mature 14-year-old are often still strongly influenced by his or her parents.
The adolescent also has a right, as Ross5 has observed, to a protected period in which to develop his or her decision-making skills, goals, and values. It may well be that by allowing the adolescent to refuse treatment now, in the name of respect for autonomy, we deny his or her right to more fully develop as a mature, autonomous individual. In some settings, we are obligated to respect the mature adolescent's autonomy, and in some settings we are obligated to respect a parent's right to choose for his or her child. We are also, however, sometimes obligated to protect our patients, usually from illness or injury, but also on rare occasion from their parents’ or their own immaturity and lack of perspective.
Abraham Cheerix believed that the recommended chemotherapy "would finish [him] off completely."6 Although we cannot know with certainty, it seems more likely that the Hodgkin's disease, not the treatment, would have done exactly that. For him, a compromise was reached that kept him involved with an oncologist and allowed him to receive radiation therapy, which apparently even without concomitant chemotherapy has a good chance of saving him from Hodgkin's disease. I recently spoke at a conference with Abraham and his attorney and asked the attorney if Abraham would have received the radiation therapy, rather than just the herbal remedy and prayer alone, had his parents not been forced into this compromise by the courts to avoid losing custody. He responded that the parents had always been open to other ideas and suggested that perhaps he would have eventually received it, although it is not at all clear.
It may well be that, had they not been brought to court for neglect, Abraham and his parents would have chosen prayer and herbal treatment only. He is a bright, well-spoken, and very amiable young man, proud of the law that bears his name. My hope is surely with him, but I am struck by the thought that if Abraham's Law had been in effect when Abraham's diagnosis was made, he might have died as a result.
When dealing with a family's refusal of treatment in life-threatening situations, pediatricians should balance consideration of the adolescent patient's right to autonomy, the family's right to self-determination, and the adolescent's right in some settings to protection from his or her own lack of perspective. In nearly all cases, communication, compassion, and patience will lead to a resolution of conflict. In the rare circumstance when they do not, consultation with an ethics committee may prove helpful, and it may ultimately be appropriate to seek judicial intervention.7 Pediatricians should be aware, however, that laws such as the recent Virginia legislation could make it more difficult for the court to help.
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FOOTNOTES |
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Accepted Jun 1, 2007.
Address correspondence to Mark R. Mercurio, MD, MA, Yale University School of Medicine, Department of Pediatrics, PO Box 208064, New Haven, CT 06520. E-mail: mark.mercurio{at}yale.edu
The author has indicated he has no financial relationships relevant to this article to disclose.
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REFERENCES |
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1. VA Code
63.2-100 (2007)2. American Academy of Pediatrics, Committee on Bioethics. Guidelines on forgoing life-sustaining medical treatment.
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3. American Academy of Pediatrics, Committee on Bioethics. Religious objections to medical care.
Pediatrics. 1997;99
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4. American Academy of Pediatrics, Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice.
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5. Ross LF. Children, Families, and Healthcare Decision Making. New York, NY: Oxford University Press; 1998:173
6. Markon J. Fight intensifies over who acts for children. Washington Post. July 26, 2006:B08
7. Spinetta JJ, Masera G, Eden T, et al. Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer: a report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Med Pediatr Oncol. 2002;38 :114 –117[CrossRef][Web of Science][Medline]
PEDIATRICS (ISSN 1098-4275). ©2007 by the American Academy of Pediatrics
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