Monday, December 5, 2011

'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!

Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.

Do not miss this clip! Go directly to YouTube for a full-screen version. Louise


Louise, Thanks so much for sharing this and blogging about such an important topic. I think more people need to be talking about these issues.

Dr. Carnavale has provided wise insight and an honest portrayal of his own evolution into a better understanding of life with children living with disabilities.

Thanks Louise!! Thanks Dr. Carnavale!

Thank you for sharing this excellent video, Louise. I love that families in the study shared that despite the difficulties with disabilities, there is so much good and reward coming into their lives as a result.

One of my friends described parenting her daughter with health needs as "mothering magnified." Yes, the stresses and challenges may be intensified, but I think we gain rewards from our children that are equally intensified.

As professional caregivers we too live with BOTH distress and enrichment, as Frank C. outlined in his Pediatrics article. It is both a challenge and a privilege to work with seriously ill children & their families. Stephen Liben MD, Pediatric Palliative Care, Montreal Children's Hospital

Welcome Dr. Liben! I think this theme of the ambiguity of the situations we find ourselves in as parents and professionals -- which can combine pain and distress and also joy and meaning -- is an important one. That you can't really separate the two out in human life. It would be fascinating as parents to learn how professionals cope with this in their work -- how do you stay receptive to the beauty and meaning in your patient's lives when there is so much pain? Perhaps you could write a piece for BLOOM! thanks again for writing, Louise

Hi Sherry -- I agree -- so many of these issues of discrimination I think we parents feel intuitively, but we don't have the mental space to ponder them the way ethicists do and put them in a larger framework.

Thank you Anonymous!

What is so wonderful about Franco is that he is so candid about his own journey in understanding childhood disability.

Hi Rose-Marie -- Yes, I think your friend described it well as mothering magnified. We don't take anything for granted.

Great to see you here!

Thanks for this Louise. Mr Carnevale seems like a wonderful person.
I love the closing lines 'throw us a bone, or at the very least don't throw rocks at us!"