Wednesday, September 15, 2010

This and that

I tried to upload a video of our therapeutic clowns here, but it didn't work. Click here and then scroll down to the videos at the bottom. Click on "clowns with child" on the left to see them in action and "clowns together" on the right to hear an interesting interview.
In other news, our very own Amy Julia Becker, who has written a number of BLOOM guest blogs, has a piece on the New York Times' Motherlode blog today about choosing not to test for Down syndrome in the child she's carrying: Why prenatal testing harms as much as it helps.

The October issue of The Atlantic magazine has a fascinating piece about a man diagnosed with autism 67 years ago -- apparently the first known case -- and about the issues facing adults with autism: Autism's first child.

And this disturbing comment was brought to my attention in a story about a lawsuit that could set a precedent in end-of-life decisions. The case alleges that physicians unilaterally went against the stated wishes of a patient and his daughter that he receive "full code" if he went into arrest. The patient was not resuscitated and died.

This comment from a professor of health law about whether end-of-life decisions need to be negotiated with family has ominous overtones for people with disabilities. It suggests a doctor can withhold treatment based on his own definition of a 'meaningful' or compromised life:

“If the patient’s life cannot be saved in a meaningful way and if intervention would deny resources that would benefit other patients . . . then the doctor is justified in clinical judgment to withhold treatment,” says Bernard Dickens, professor emeritus of health law at U of T. “Clinical judgment is not negotiated with patients.”


I think an important adjunct to this legal case is an article that was published in the Cdn Medical Association Journal in 2007. The article represents the views on "futile care" by the Ontario intensive care community.

The working definition of medically futile care is defined in the article to mean the "use of considerable resources without a reasonable hope that the patient would recover to a state of relative independence or be interactive with his or her environment."

Independence? Interactive with environment? These are very concerning words when applied to children. Is a non-verbal child at risk? What about a child who will always be dependent? How much is "considerable resources" and who decides?

Considering the legal opinion expressed by Prof Dickens and the views of the Intensive care community as expressed in the article, parents of children with certain disabilities would, in my opinion, be wise to be vigilant and in fact perhaps be alarmed if their child needs admission to an ICU in Ontario.

I am of the opinion that the public, medical community and policy makers need to communicate to ensure that there are transparent and appropriate limitations to care. Nobody would want to suffer an end of life tragedy like that which the poor woman alleges to have experienced in the STAR article.

The third link is taking me to the same page as the first. I just had an OB appointment today for this pregnancy and my doctor asked me if I wanted the blood test, she knew I had declined when my Nurse Practitioner asked, but she just wanted to make sure. She reassured me that it was totally my choice and that she just wanted to make sure she had asked all the questions. She was very respectful.

I don't think there's much point to that blood test. At least not for me, I said it the first time around with Skyler, if my baby is born different I will love them just the same as they are no less my child. And what do you know my first son was born different, and no test would have told us that he'd have septo-optic dysplasia. And even if it did, I think that would have stressed me out even more. I'm glad we found out AFTER we had a beautiful baby boy in our arms who we already loved unconditionally. (I loved him in the womb too, but I think I would have been more worried not being able to see how happy he is!)

Hi -- Thanks for letting me know about the link -- I've corrected.

Thanks for your messages. I'll post more tonight!

Dear Anonymous -- This is very troubling. I am going to check out the link to the article you mention. Yes, how could this apply for a child who has never been independent -- they couldn't be "returned" to an independent state? It's disturbing to me that independence is associated with a good/worthy life. And there are many children who cannot interact with their environment in conventional ways that are obvious to the eye.

THank you for sharing this important information!

Hi Azaera -- thank you for sharing. I had very negative experiences with prenatal testing. I'm glad your OB was so respectful. You must be very excited about this little person. Congratulations and say hi to Skyler! I hope you can write again for us. Louise