November 23, 2006

Proxy consent

Is it morally right for society to allow parents of children too young to make their own decisions to deny them the medical attention they require for survival for religious reasons?
  • Yes, it is their child after all
  • No, absolutely not
  • I'm Not Sure

I see this as a question of responsibility. Ultimately, who is held responsible for the death of a Jehovah's Witness child if they get into a serious car accident and need stat blood transfusions in the ER? Is it the person who drove the car? Is it the ER physician? Is it the parents for refusing to give their child blood? Is it God? Everyone has different answers. "It was God's will" is often invoked as a way of accepting the passing of a loved one. However, gods do not swoop down and cast their miracles, blessings and curses down upon us on a daily basis, manipulating our fates in the same way that a storyteller casts roles for his characters and tells them what to say and do. We all have free will to do as we wish.

If we have the power, the capacity and the opportunity to save a life, then I feel that we are MORALLY OBLIGATED TO DO SO. With power comes responsibility, because where we once had no options but to grit our teeth and pray, we now have Choice. We can Choose to alter the fate of a human life in the case of emergency medicine.

Not everyone will choose to follow the same course of action.

"You have the right to choose", the Watchtower says. This biweekly publication for Jehovah's Witnesses originally introduced the ban on blood transfusions in 1945 and since then, it has complicated the treatment for their adherents. While I find it regrettable that JW's would refuse treatment, by the ethical principle of autonomy, they are allowed to do so as long as they give informed consent. This means that they fully understand all of their options and perform a cost-benefit analysis according to their own principles and make a decision. The difficulty underlying this is how it can be applied to young children.

The British Medical Journal has this to say on the subject of proxy consent:

With regard to religious based refusal of blood products by parents, courts in the western world are of the opinion that the child’s welfare is paramount and blood can be given. Consideration should be given to parental views and treatment moderated where possible but if conflict occurs, the child’s interests always come first.

Regarding adolescents, there is no worldwide consensus on the legal position of adolescents refusing blood transfusions, but recent cases suggest that the UK’s approach is probably the most acceptable. While many children raised in JW communities may never experience the "outside world", the judiciary would be wrong not to give them that opportunity. Religion is a powerful persuading voice, but it is also an individual belief. A limited life experience cannot truly give one the opportunity to rationalise a belief that may eventually lead to death.

Archives of Disease in Childhood 2005;90:715-719

Past courts have ruled similarly, citing differences between developed adult beliefs and those of their undeveloped children. In 1944, Prince v Massachusetts set out the reigning legal principle:

Parents may be free to become martyrs themselves. But it does not follow that
they are free, in identical circumstances, to make martyrs of their children...

In 1999, Alexis Demos was a 17 year old who refused to undergo a blood transfusion when she lacerated her spleen after a snowboarding accident. Her decision and that of her family was challenged by physicians and ultimately went to the Massachusetts Supreme Court where they ruled in favor of the physicians. What parents often forget is that they are not solely responsible of their child's welfare; doctors and nurses who care for the patient are emotionally affected as well. The death of a child who would have been saved under any other circumstances rests on their consciences.

However, the beliefs of Jehovah's Witnesses are not to be dismissed or ignored by the medical community. For them, this is not a routine medical procedure, it might be a test of their faith and a gauge for their quality of life. As one Jehovah's Witness told me, "If I receive a blood transfusion, I won't be living in the face of God and it would be better to die than face that." Those are strong words to live by (and die by.) Blatantly disregarding these strong beliefs would violate her autonomy and her personal well-being. Many surgeries can be performed with alternative blood products, saline infusions and "bloodless surgeries" that cater to their particular beliefs.

When I encounter patients with strong faiths, I will ask them about their faith in medicine and their faith in me. If I am going to help them, I think it is important that they believe in me and my dedication to best serve them.

1 comment:

  1. The following website summarizes over 200 similar court cases involving Jehovah's Witness Parents who refused life-saving blood transfusions for their children: