Question

As you think about your patient with advanced cystic fibrosis, think about the ethics of a child who needs a lung transplant (or any organ transplant) but may not want the organ transplant or wants to discontinue treatment, but the family wants to continue therapy at all costs. How would you counsel a family wants to continue treatment, but whose child wants to discontinue treatment? How would you approach the situation if a families beliefs (religious, cultural or spiritual) represented a decisions that were different from your own decisions? What can be done if the child is underage? Who ultimately has the right to make these healthcare decisions?  

Answer 1

For a child who needs an organ transplant but he/she does not want to do it and the parents and the health care provider wants him to do it, there is the mature minor doctrine. This doctrine says that a minor capable of decision making cannot be overridden in decision making by his/her parents. The child can be advised and convinced for an organ transplant, but any decision made by others cant be imposed. Any child underage or minor needs parental consent for an organ transplant; however, this should be in line with the best interest of the child. Parental consent is necessary in all treatments other than emergencies. There are state-regulated laws of parental consent.

In the dilemma of parents wishing to continue treatment and child wishing to discontinue treatment. First, the child should be educated about the pros and cons of the treatment. It should be presented in such a manner that the child would understand that the pros of the treatment outweigh the cons and hence he/she should continue the treatment. If he/she still wants to discontinue the treatment, it should be done as or his/her will. The parents should be informed about this particular patient education and should be counseled that going against the child's wish won't be in his best interest.

When a family's beliefs (religious, cultural, or spiritual) represented decisions that were different from my decisions, I would convince them that my decisions are better than theirs by arguing that health is wealth. I would advise them that any religious, cultural, or spiritual belief is not above health or life and what really matters is life. Only a living person can follow/practice a religion or culture and to live one needs to follow medical advice first.