National Health Care Decisions Day, Jehovah’s Witnesses & Mature Minors

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Category: Health Care, Religion & Law
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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?

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8 Responses to “National Health Care Decisions Day, Jehovah’s Witnesses & Mature Minors”

  1. Rebekah Feirsinger Says:

    I find your discussion very interesting. As one of Jehovah’s Witnesses it is a very pertinent question. Witnesses also don’t refuse all medical treatment, just blood transfusions, and fortunately medical science over the vast many years has developed many alternatives to using blood that have proven extremely effective. (Not that your posting suggested we did refuse all medical treatment – but some people just assume because we don’t accept blood transfusions we don’t accept any medical treatment.)

    One thing interesting about my religion is that you are not baptized until you are mature enough to make that decision for yourself. And to be baptized you have to meet with the elders of the congregation you attend and go over questions to prove that you understand the dedication you are making. I think that in itself shows maturity and understanding of our religious convictions.

    Unfortunately, though, the topic of minors and medical treatment is very complicated, and there is no easy band-aid solution for anyone involved. I wish there was.

  2. Tom Kamenick Says:

    Question: would Jehovah’s Witnesses object to a transfusion of their own blood? Would it somehow be possible to give a lot of blood a little bit at a time over time? How long is blood good for?

  3. Emily Dykema Says:

    Emergent situations tend to provoke various emotions and responses that may not be congruent to a person’s usual behavior or thinking. I am happy to read that you are an individual that discerns this, and desires to find a solution for physicians as well as people of faith. Are you suggesting an interview between a minor and physician and/or judge, where by the minor shows their capacity to be “mature”, and then documenting that interview by legal means?

  4. Some Jehovah’s Witnesses do refuse their own blood, and there are some treatments that try to account for different interpretations. Closed systems such as soul-saver and stryker blood conservation are examples. So clinicians have long been trying to create medical work-arounds. But like any group, religious and otherwise, individuals have varying understandings and beliefs. Extremely helpful in these matters (and what was utilized in my case) is the Hospital Liaison Committee (HLC), which provides on-call JW counselors to assist with both patient/family concerns and clinician concerns.

    I am suggesting a method to designate a minor as “mature” in advance of possible medical encounters. As Ms. Feirsinger suggests, minors of my patient’s age do go through a Baptism which addresses these matters. My patient, as I learned, even completed an JW-specific Advance Directive — which is invalid due to minority, and both it and the Baptism wouldn’t be very helpful as guidance in emergencies.

  5. Jack Wyatt Says:

    JW’s are not allowed to have their blood stored weeks in advance for a pending surgery. They are allowed to have some blood completely removed from their body during a medical procedure, stored and then later transfused back into them usually near the end of the procedure or shortly thereafter. I’ve never heard an explanation as to why the latter procedure is okay but the former isn’t but one thing for sure is that the latter procedure involves transfusing stored blood into one’s veins. If transfusing blood into the veins is equivalent to eating it as JW’s claim then why aren’t JW’s that have blood transfused in this manner guilty of eating blood? It makes no sense.

    So once again, if I was a judge and had a JW minor before me, I would ask them if they would accept a transfusion of their own blood. If they said yes then I would ask them why taking a transfusion of their own blood doesn’t count as eating blood but taking a transfusion of donor blood does count as eating blood. If they couldn’t give a logical answer I would rule that they are not competent to refuse a transfusion of donor blood on the grounds that doing so is equivalent to eating it. Either transfusing blood into the veins is eating it or it isn’t eating it. JW’s can’t have it both ways.

  6. The surgeon in this case had a lot of trouble with reconciling the Jehovah’s Witness faith.

    At 2am, he questioned aloud to me, “I don’t get it. I don’t understand why it’s that line in the Bible that they hang their hat on.”

    I responded, “What do you mean?”

    Surgeon: “I was raised Jewish and have always kept kosher. I have never eaten pork. But I know, without a doubt, that if I needed to eat pork in order to save my life, no rabbi in the world would tell me not to eat it.”

    I replied, “Well, for me… I had to choose never to have a blood transfusion for the rest of my life, or to never have bacon for the rest of my life, I am without hesitation a Jehovah’s Witness.”

    Not to diminish the entirety of JW with my possibly problematic love of bacon (and basically all pork products). It is very difficult to garner a holistic understanding of a personal belief system from the outside. I have a superficial understanding of the JW and I work hard to ask helpful questions to learn more and to be sensitive to their beliefs, but I don’t think I can understand the spiritual comfort being JW provides to its adherents. I’m not looking for logic in their faith. That’s not my job.

    Moreover, I know I am not always the most logical person. I am very aware of the animal rights argument. I accept ALL of the premises as true and I reject the conclusion. Not that I reject it, but I have to admit that at this time I either lack the character or ability to be logically consistent (or rather, I am suffering from the pain of inconsistency).

    Moreover, on an experiential note, few people are logical, especially when difficult decisions. If validity and soundness are requirements to informed consent then we will be left with Spock, Smullyan and Cyber-men (Dr. Who scores me some alliteration!) as decision-makers.

    Logical decision-making can even prove problematic. Consider the Three Laws of Robotics and how that turned out.

    Or perhaps I misread and you were suggesting you would be simply testing that the minor understands the arguments, debates and responses that any mature adherent knows (sort of a reasonable JW standard…)?

    Maybe something else?

  7. Rebekah Feirsinger Says:

    In response to jack Wyatt’s question as to why one would be allowed and one wouldn’t. It really depends on how it was “stored.” As a Witness I would not allow blood to be removed from my body, stored in a separate vessel, and then put back in. This to me, as you pointed out, would be the same as any other type of blood trasnfusion. But if the blood was (and excuse my lack of technical terminology in the medical field) circulated from my body and into a machine and directly back into my body, thus the machine in a sense becoming a part of my circulatory system, then such a process would be okay as the blood never leaves (in essence) my system. But as Mr. Pauley points out, there are some of these things that some JW’s would accept while others would not. At some point it becomes a matter of conscience.

    Mr. Pauley, you left out the Daleks. Although they do not fit into your alliteration, they were very logical in their own world of vengence.

  8. Y’know,

    I’ve mentioned the Daleks to the the doctor, and the doctor had a very noticeable and aggressive reaction to involving them. There must be some history there…

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