Refusing Medical Treatment

There was a great show on Talk of the Nation today on the right to refuse medical treatment based on the family that fled under a court order to provide chemo for their child with cancer. 

I have had both friends and family refuse medical treatments for various reasons, and others who have used every available option. Going through this with loved ones so many times, I have come to understand how nuanced and intensely personal these decisions are, and to respect the place that people come to for their own reasons. 

Parenting a child with complex needs makes these decisions so much more complicated to me than these other decisions. There all the disability rights issues, the moral and ethical issues, the quality of life issues there are also questions of her informed consent. The most important thing to me for any one facing these decisions is what matters to them. Yet how much can I rely on that with my child? Not so much, I think. Does that necessarily mean we do everything we can always, or would I do what I think I would want, or what? 

Right now, I do everything, always. It feels right; she loves life, we love her, that is enough. 

But there are the complex legal issues of refusing treatment for a child-- as a parent, we mostly can't refuse treatment. I could be in a bad situation if I refuse to go to the ER for another seizure and things go wrong. Or if I decide to try to take her off just one of her four seizure meds to bring her back to the world of the alert, without her doctor's consent? What is the role of the medical establishment and what is my role in parenting my child? I am not sure how I feel about that right now. But I appreciated the conversation today on NPR.