Teenage Decision-Making Capacity

Abstract

Teenage Decision-Making Capacity Ian Mitchell and Juliet Guichon To the Editor: We read with interest the case study in the November-December 2007 issue ("Old Enough," commentaries by Robert D. Orr and Debra Craig). The commentaries focus on whether a teenager named "Joy" is sufficiently mature that physicians should respect her blood transfusion refusal. The commentators consider only one issue: "Is Joy competent?" But even if she is, that is not the end of the story. While competence is essential in medical decision-making, so are two other requirements: voluntariness and the availability of full information. These three elements are equally necessary for a patient to have the capacity to accept or refuse proposed medical treatment. In 2006, we published in Paediatrics & Child Health on similar but real Canadian cases, with an unexpected outcome. The Watchtower Society wrote to the editors of that journal in an apparent attempt to prevent publication of what we had written. Fortunately, the journal editors exercised their independence and published our article. In the real cases that we reported, lawyers representing those attempting to care for the young patients presented evidence in court that the teenagers' decisions were not voluntary and that they were given incomplete or misleading medical information. In Jehovah's Witness cases, voluntariness can be compromised by the threat of losing family and friends. What the Watchtower Society now calls "disfellowshipping"—and previously termed "shunning"—is a reality in the lives of Jehovah's Witnesses. Teenagers know that their choice is between refusing blood transfusion or losing meaningful relationships with their family and friends. Is it any surprise that some refuse blood transfusion? Moreover, the information Jehovah's Witness patients receive about the risks and benefits of blood is likely to be misleading. In one of the legal cases we presented, the judge ruled that "incorrect information" had been given to the patient that took "away her ability to make an informed choice." Information provided about blood by the Watchtower Society can be illogical and inconsistent, as has been described at length by neurologist Osamu Muramoto in the Journal of Medical Ethics. A useful Web site created and maintained by the Associated Jehovah's Witnesses for Reform on Blood, http://ajwrb.org, lists numerous policy contradictions. These include the puzzling fact that the Watchtower Society does not permit whole blood transfusions, but does now allow hemoglobin and blood fractions such as Factor VIII. We recommend that pediatricians give families this Web address to enhance their knowledge. The case summary and commentaries would have been more instructive if they had contained details of the family's context. More helpful than a focus on patient maturity would be ethical discussion of how to promote a young patient's autonomy in a context of constrained voluntariness and poor information. We are surprised that aberrant cases involving Jehovah's Witnesses are ubiquitous in ethical discussions of the capacity of teenagers to make medical decisions for themselves. Focusing on the aberrant does not necessarily advance understanding of the norm. Perhaps it is time for some realism to be inserted into bioethics reports concerning the Watchtower Society. For example, Orr's comment begins "All adult Jehovah's Witnesses refuse whole blood, packed red blood cells, white cells, platelets, and plasma." Would a commentary on adolescent use of contraception begin "All adult Roman Catholics refuse artificial contraception"? Perhaps it is also time for ethicists discussing teenage maturity to use more representative cases, uncolored by coercion and misleading information. Nevertheless, we are encouraged by Debra Craig's conclusion: "I remain unconvinced that an adolescent's decision to die should outweigh society's compelling interest in keeping her alive." Ian Mitchell Juliet Guichon University of Calgary Ian Mitchell and Juliet Guichon University of Calgary Robert D. Orr replies Ian Mitchell and Juliet Guichon are correct that capacity, voluntariness, and adequacy of information are all pertinent in cases of the sort discussed in my commentary, but they incorrectly state that my commentary focused only on competence, when in fact more than a third of my text addressed the issues of voluntariness and adequacy of information. Perhaps they thought this was one of the "aberrant" theoretical cases they criticize. They say that...