April 16th is the 4th Annual National Health Care Decisions Day, a day when health-care practitioners reach out and express the importance of having discussions about personal values and treatment preferences, especially in the event of loss of function and end-of-life circumstances. I encourage every adult to complete an advance directive because any adult can fall down and go boom. (Remember: all of the seminal “withdrawal of care” cases involved young women: Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo were all under 35 when they suffered their respective traumas.) So here is my pondering for the occasion:
Recently I assisted in a case of a 15-year-old Jehovah’s Witness rushed into the emergency department “bleeding out.” Jehovah’s Witnesses (JWs) regard blood transfusions as a violation that has profound spiritual implications, and accordingly, refuse such transfusions even when such treatments can be life-saving. Supporting JWs in their refusal is an early-learned bioethics lesson as students explore issues of patient autonomy and respecting cultural values. Competent individuals have the right to refuse unwanted medical treatments, even when refusal will lead to death. But this was a 15-year-old.
The patient’s stats were very low and emergent surgery was needed. The patient’s mother didn’t want the teen to receive a transfusion. Moreover, the teen didn’t want to be given one either. There are cases when adolescents can show themselves to possess the decisional capacity and maturity to give informed consent and choose not to receive life-sustaining treatment. This is known as the “mature minor” exception. Proving oneself to be mature often requires a frank discussion with a judge or a hospital ethics committee. Just as in any other case of informed consent, minors must possess understanding of the diagnoses and prognoses, the ability to communicate their values (and apply them to the medical situation), and so forth. Given the life-and-death nature of the decision, time for deliberation is often crucial — including time to provide the minors with support from family, religious leaders (for cases such as JW refusals), and health care providers. Chronically ill children often have a very mature and nuanced understanding of their disease processes and an ability to weigh values and the benefits and burdens of treatment. However, in my case, the 15-year-old was extremely distressed given the emergent situation and unable to have any real conversation. The mature minor route was not available.
But I started to wonder about ways to improve how we respond to these situations. We talk about advance directives and the importance of declaring one’s wishes and discussing with family members about how to respond to health-care situations when one is unable to speak for oneself.
Can there be a system put into place in the JW Church to designate minors as mature to provide evidence for possible and unanticipated medical scenarios?
Yes, I realize that non-adults can’t create true directives. I’m not trying to create a legally binding and dispositive document that will “solve all JW conflicts around children between ages 13 and 17 and 364 days,” but rather a proactive discussion that will inform the ethical decision-making process. Minors can, for instance, express their organ donation preferences on their licenses: sure mom and dad can override what it says, but it still allows a discussion of “what the patient would want” to occur.
I’m writing this off-the-cuff. I’m not sure if this idea has already been explored (if so, post a link in the comments). But if it is somewhat original, I wonder how it can work. Perhaps an administrative body can be created or perhaps a friendly judge can make himself or herself available. Perhaps a hospital system can make itself available to have these conversations with perfectly healthy minors and document the discussions so future narratives can have context.
Respecting patient autonomy is generally an easy thing to do. Making decisions for minors muddies the waters, and emergency situations further complicate the matter. I welcome comments on this idea of mature minor advance directives — are they feasible? Will they complicate more than clarify?