I spoke on ethics at this month’s Grand Rounds at Holland Bloorview. This had me spinning for days beforehand! Not so much in trying to figure out what to say, but rather how to fit everything into a one hour presentation. Carsten to the rescue again! Reminded me (on the phone from Namibia, no less) that I didn’t have to present the Big Theory of Everything. So I went for the Big Theory of One Thing instead: Parents and patients might not be getting what they need from healthcare in order to make important decisions. Clinical information alone just doesn’t cut it for someone to make the right decision for themselves–but it’s typically all that healthcare has to give. When this happens, we become over-focused on potential outcomes at the expense of what is here and now, setting us up for likely regret.
I’ll borrow a description from Louise at Bloom, who referenced my talk in her recent blog post (about her son’s plastic surgery) and summed it up nicely. She wrote:
I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists — which in our case often came in the form of “If this was my child, I would pursue it” — can’t take the place of careful inner enquiry on the part of parents to understand ‘why’ they’re considering the intervention. Who is the surgery being done for? What might the child choose? If gains will just be incremental, does it justify the pain of the procedure and rehab? We’re often not prodded to look at the bigger picture in terms of how this surgery fits with everything else going on in our child’s and family’s life. And how may we feel if the outcome isn’t what we hoped?
I read two passages from the book in this video–if you wish to skip these, they occur at 08:45-11:25 and 17:33-end.
It was a brilliant talk! I felt the tears come when you described your conflicted feelings around the baclofen pump and how, after it was removed, you sometimes held your hand over that spot on Owen to remember what it looked like before the implantation. It brought back all of the regret I had about Ben’s plastic surgery.
Professionals NEED to hear about these experiences.
These medical decisions are so huge on so many levels and our kids and our families so fragile, that teasing apart whether the ‘why’ we are doing something makes sense — FOR US — is a monumental task.
The numbers, the benefits and risks, the ‘best practices’ and clinical recommendations can’t hint at what some of these interventions may do to our kids and ourselves –psychologically, emotionally, physically — and to the delicate balance of our families as a whole.