Saturday 14 January 2012

The Ethics of Amelia's Transplant Story

I've been taking a break from blogging recently. Every so often, I begin to feel brittle and sore from the jostling of everyday life - I feel as if someone has removed the skin from my body. On the outside is flesh, nerve endings, sinew and muscle. If a dog pants near my leg, it hurts. I flinch if I brush by the kitchen counter. I think it's all the change in our family life, along with Christmas. And then there were the events of this week.

Last weekend, we were asleep at 12:30am when the telephone rang. It was Nick's nurse who reported that a beeping sound was issuing from his implanted pain pump. She had googled the pump and found that this particular sound indicates a 'critical alarm' - either the pump is dangerously low in medication or it's malfunctioned for some other reason. Either way, it means a trip to the Emergency Room. So, we spent the night there waiting while the doctors tried unsuccessfully to locate any information on the pump and what to do about this odd young man and his mysterious pump. In the morning, our own doctor came and refilled the pump with some medication to carry us over till Monday when a proper refill could be done. Medication errors happen and we are fortunate that they are very rare. All's well that ends well.

Fast forward to Thursday. When I arrived to visit Nicholas, I noticed in his chart a note about a swelling under his right arm. I lifted Nick's shirt and sure enough, there was a swollen ridge, red, hot and sore to the touch. The doctor had been called and when he arrived later (yes, our amazing GP does house calls for Nick!), he lanced the thing and dressed it. I felt so badly for poor Nick. But although he shouted and cursed during the procedure (fair enough!), he smiled and asked for a new playstation game when the whole thing was over. That's my boy - he's a great entrepreneur.

I feel recovered enough today to write down some thoughts about an internet story that is making the blood boil of every parent in the child neurology internet fora. A little girl called Amelia was turned down for a kidney transplant by physicians at the Children's Hospital of Philadelphia because she has a developmental delay. Apparently her quality of life came into question and the ethics department of the hospital could not sanction prolonging the life of someone so apparently diminished. A quick reading of my last post on this blog will tell you that I and others have recognized this pernicious trend in medical professionals to limit the treatment options for those with cognitive impairments and it's a trend I think is very, very dangerous. One comment on Amelia's family blog about the whole mess warned "this is the beginning of the death panels". I don't agree. This has nothing to do with such simple notions of widespread limits on treatment due to fiscal belt tightening. No, this is an issue to do with disability, particularly cognitive disability. There is a current trend in the medical profession and amongst bioethicists to downgrade the worth of a life lived with cognitive impairments. And those prejudices are playing out in transplant committees as evidenced by Amelia's story.

I will put my skin back on and start writing about this. Today.


BLOOM - Parenting Kids With Disabilities said...

Donna -- I am so grateful that you have brought this case to our attention! I have already written to a contact I have at CHOP and one of the ethicists we have interviewed on BLOOM. I can't even put into words how I feel now.

I plan to find an ethicist or physician who will comment on this.

You described that vulnerability we parents have so well -- the image of being without skin. I am sorry you have had such a crazy week with Nick but I am very glad that he is okay and yes, it's amazing your doctor makes home visits. Restores one's faith in humanity. Again -- thank you so much for bringing this story to our attention! xo

The Caregivers' Living Room said...

Hi Louise! I am going to try to get a comment from Eva Kittay, Prof. of Moral Philosophy at SUNY and author of, amongst other books, "Cognitive Disability and its Challenge to Moral Philosophy". I'll keep you posted!

BLOOM - Parenting Kids With Disabilities said...

That sounds wonderful!

I also just posted on it and referenced your piece.

I tried to leave a comment on the website but was unsuccessful -- I am thinking it may have gone viral because the comment section seemed to be frozen.

j* said...

Yes ma'am. This is discrimination and it has to stop.

Heather Cariou said...

Can't believe it's almost 40 years ago that my sister, who had CF, was turned down for an educational rehab grant to attend college, because officials felt she wouldn't live long enough to make their investment in her worthwhile. From this story, it seems that the more things change, the more they stay the same. Those challenged by illness and disability still have to fight ignorance and discrimination as well. It's disheartening, to say the least.