Re: Teenage decision-making in the context of the Jehovah’s Witness faith (again)

To the Editor;

Dr Harrison’s article (1) debates when paediatricians should accept a teenager’s refusal of potentially life-saving or life-prolonging treatment. The article addresses only one of three necessary elements of consent: competence. Not discussed are the two other requirements – adequate information and voluntariness.

Full discussion of the three elements that are necessary for consent to medical treatment is particularly important when the adolescent patient is a member of a Jehovah’s Witness (JW) family. This is a subject that can evoke strong emotions. Our paper (2) on this topic was published in the 2006 issue of Paediatrics & Child Health. Indeed, the governing body of JWs, the Watchtower Society (WTS), wrote to the Journal in protest over our then unpublished article, which had been accepted after two rounds of peer review. The editors of the Journal resisted the WTS’s representations.

Our article presented details about three real cases of adolescents who refused blood transfusions. In each case, the information we offered came from publicly available sources, such as court transcripts or reports of court hearings. Our article, therefore, had rich grounding in actual cases and in reported alleged practices of JWs, the WTS and WTS lawyers. By contrast, the Harrison article presented and then discussed a hypothetical case. There is a place for theoretical cases and commentary thereon, but we suggest that the Journal follow the Hasting’s Center report’s example. A recent edition of the Hasting’s Center report (3) presented a short hypothetical case of a JW teenager, followed by two commentaries from different perspectives. Two commentaries are preferable to one because it is unlikely that one person can fairly represent all views in this controversial bioethics matter.

We express concern also about the paucity of detail offered in Harrison’s hypothetical case. When analyzing ethically fraught matters, it is customary to examine very carefully the context in which the situation arises. It is important to recognize that untold numbers of JWs, who are otherwise faithful to WTS teachings, in fact disagree with the WTS’s biblical interpretations about the uses of blood. Some JWs, who have a different understanding of the relevant biblical passages, have created a Web site that we have found extremely useful (4). We suspect that the Web site will be similarly helpful to most paediatricians who may choose to offer it to families, thus permitting them to know that further information on the complexities of blood transfusion, and some alternative perspectives, are readily available.

In our article, we gave specific detail about possible problems in the quality of information an individual JW patient may have about the risks and benefits of blood. We also addressed problems of voluntariness in decision-making among teenagers. In other words, we described clearly that two of the three elements of informed consent may well have been absent – ie, adequate information and voluntariness. This discussion made it apparent that, even if an adolescent is assessed to be fully mature, the assessment does not, by itself, solve the problem of whether he or she can accept or refuse proposed medical treatment.

Indeed, cases of adolescent refusal of blood would be relatively easy if the only issue was maturity. But what is concerning are the issues that the recent article does not address: How does one establish that a young patient has good medical information when (among other problems) the religious authority’s Web site contains misleading excerpts from dated medical journals (5), when medical personnel statements can be contradicted by religious people who visit hospitals (6), and when the credibility and good faith of medical personnel are constantly in question because they, like all other non-JWs, are said to be subjects of “Satan the Devil [who] really is the unseen ruler of the world! (7)”? How do physicians assure themselves that a patient is choosing without coercion when a particular medical choice will cause the loss of family and friends (8), when the patient’s lawyer appears to also represent the religious authority (9,10) and when the WTS instructs individual JWs ‘to squeal’ – to breach medical confidentiality if, in their work as health care providers, they learn that a patient has accepted blood (11,12)? Finding answers to these questions ought to be the focus of bioethicists because these are not just difficult issues worthy of academic consideration, they are of vital practical importance to paediatricians and other physicians who must assess capacity to consent in a social context in which preventable death is a distinct possibility.

We agree that paediatricians are likely to suffer extreme moral distress if a teenage patient dies due to the lack of a blood transfusion. But we strongly disagree that it is “consistent with legal and professional standards (1)” to accept the teenager’s ‘decision’ when the patient’s quality of information and degree of voluntariness have not been considered, let alone assessed. In a supplement to our paper, we wrote:

Paediatricians must look for all elements of consent: competence, information and voluntariness. Most difficulties among physicians, parents and adolescents are resolved amicably. We support this. In some situations, reporting to Child Welfare is a statutory duty and legal help is required (13).

Refusal of life-saving or life-prolonging treatment clearly presents paediatricians with a difficult situation.

Nevertheless, we agree with the conclusion regarding the JW case published in the Hasting’s Center Report: “Physicians have a sacred charge to do no harm. If we err, I prefer it to be on the side of life” (3).