Monday, July 11, 2011

Parental objection

My mom was a critical care nurse for 20+ years. I once asked her what was the most difficult thing about being a nurse.
"I'll never forget, Kate. A young girl, no more than 8 years old came into the ICU. She needed a blood transfusion, but her family was Jehovah's Witness. They refused the transfusion and she died. They let their baby girl die, and I could never understand that. I remember being so angry. But over time, it becomes a part of the job. And while I could never condone their actions, my anger tempered with time."
Well, I've got news for you. I'm still young and this fires me up.

But while at the doctor's office several weeks ago, I picked up the Lahey Clinic Journal of Medical Ethics (Winter 2011). One of the articles, entitled "When is conscientious parental objection to treatment justified in pediatric practice?" by Dr. Joel Frader caught my eye. In the article, he talks about a case study of a young mother pregnant with hypoplastic left heart syndrome (HLHS). Surgeons discussed options for surgery after the birth, which called for "aggressive home treatment". The mother already had one disabled child, and was considering letting her second child die naturally after childbirth instead of surgery. A Bioethics Committee was consulted to weigh the baby's life versus imposing a large burden of care on an already overburdened family. Dr. Frader's question is: just because we can do something, should we?

HLHS seems to be the perfect case study for this question because it is definitely in the grey area. Without surgery, the condition is fatal. With three risky surgeries, the baby may survive. Patients will need intensive home care, medications, and many require an eventual heart transplant in young adulthood. Lastly, even after all this surgery, brain damage is still a very likely outcome.

So, should we get a court injunction to have the surgery?

My answer is no. For me, the situation must be more black and white to overrule parental objection. The case of blood transfusions for Jehovah's Witness patients is clear. The child will die without blood. Blood transfusions are low risk and well documented to save patients lives without side effect. No matter what the parent says, I think a child should be given blood.

But for a risky, three-part surgery with limited functionality after the surgery, a probably heart transfusion and years of difficult care? Is it more ethical to ensure the baby lives a questionably fulfilling life at the cost of imposing significant hardship on the parents and sibling, or to let the baby die naturally allowing the parents to continue caring for their disabled other child? I cannot force the HLHS surgery on someone. I don't know what I would do myself, but I know it would be a hard decision if I already had a disabled child I was having difficulty taking care of. Not to mention the horror of watching my baby go through 3 life-threatening surgeries, potentially going on the transplant list or potentially developing cognitive damage. Because of this, my answer is a resounding no. Unless the situation is clear cut, with undisputed scientific evidence that the complication risk is very low and the treatment is effective, parental objection should be respected.

Dr. Frader's conclusion is more eloquently stated, with more references and supporting evidence, but along the same lines; it really gave me something to think about. Those of you interested in medical ethics should definitely read the full article.

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