Friday, December 2, 2011

A fate worse than death?

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.


Reminds me of an old article Ian Brown did in The Globe. He quotes one neonatologist as saying Some parents consider any likelihood of disability too much. "The higher you are socio-economically, the less likely you are to want the complications,"
I imagine that applies as much to themselves as to the parents they claim it does.

as an intellectually disabled adult, this hurts more than I can imagine. it makes me want to give these people the chance to be intellectually disabled, perhaps through non-standard means of acquiring said disability, and then ask them if they want to live.

The (often unspoken) opinion that intellectual ability is the primary yardstick for human worth is all too common. Eva Kittay, in her book "Cognitive Disability and Its Challenge to Moral Philosophy" forces Princeton bio-ethicists Geoff MacMahon and Peter Singer to cough up their real ideas about those with severe cognitive disabilities. The comparison they draw is with a pig, or in lesser cases of disability, an ape. There is a real danger here of policy being made and funding mechanisms being created by those who secretly harbour these ideas. I am very encouraged to see physicians coming out of the closet and the beginnings of a public discussion on how to fund a good life for those with cognitive disabilities and on what basis we should make those decisions.

Louise thank you for continuing to ask the tough questions. So many things remain unspoken when it comes to disability in our society. Unpacking the values (and massive blindspots)in our thinking is absolutely critical if we want improve the lives of our kids and challenge our society to do better by them - and all of us. Kudos again my friend.

Anonymous -- that's an interesting point. That disability in a child is harder to accept among those who are more educated/better off -- those who already have 'status' in our culture that places so much importance on what you do and how much money you make. It requires a bit of a paradigm shift, doesn't it?

Hi Jason -- Thanks for your comment. I find it almost surreal, and certainly deeply disturbing, to be sitting in a conference and hear these beliefs voiced -- as the parent of a child with intellectual disability.

Hi Donna -- thanks so much for posting. I agree, the fact that we are actually talking openly about these issues is a very positive sign! And the fact that people like Franco Carnevale and others would like to make ethics related to children with disabilities a focus is promising.

I have been recommending Eva's book to everyone!

Thanks Anne-Marie.

As you say, so often we are unaware of the values that underly assumptions and prejudice. xo

I read your blog and it was very emotional for me. I agree that even within the special needs world and disabled community, physical ones seem to be "ranked higher" or get more attention than intellectual ones. As our kids get older, a teenager or adult with an intellectual disability are not as "cute" or gets as much sympathy/attention/understanding as a child does.
It disturbs me greatly what the doctor said about our children being better off dead and that it was a unspoken feeling among them. What also struck me was the comment about the rating of quality of life. At times it does sadden me to think about life experiences our son will miss out on.... then my husband will say "How can you miss what you have never experienced?" I am projecting my own feelings onto him and it doesn't do either of us any good to dwell on that.
Your blogs are amazing - they touch me deeply.