Saturday 3 September 2016

The Talk Disability Parents Want With Doctors

In the early days of our therapeutic journey with Nick, it was clear to me that any show of love or grief diminished my power. In meetings with the treatment team, I would try to be 'professional'. I tried to hide my emotions in order maintain my dignity. And I brought a briefcase and shuffled papers in a show of power. It was a sham.

Some days we have feelings, strong feelings. So do our doctors. But we talked around our feelings and I don’t recall ever once anyone asking me, “What do you believe is happening to your son? How do you feel about your treatment choices? How can we support you now, given Nicholas’ realities?” I do remember saying, “I need you to be kind to me; I really need that.” In my way, I was pleading for a compassionate, honest conversation that would enable us to examine each other’s understanding of where we were with Nicholas’ treatment and where we were likely to go. I wasn’t seeking certainty; I was seeking honesty, reassurance, respect and kindness.

So, what are the conversations families really want to have with doctors?

In the period after diagnosis, parents are in shock. I think the first question we have, which is difficult to voice, is ‘can I love my baby?’. I think it’s a deeply human question for parents to ask themselves because suddenly we feel we may not have the knowledge or skills to care competently for a complex infant. Parents need a lot of reassurance that we can love and care for our baby. Soon, questions become centred on our child’s future. ‘Will my child survive?’ becomes ‘Will my child be happy? Will my child be able to learn at school? Will he work and have a family?’ These are the questions that are crucial for families and doctors must address them with great compassion and kindness. 

We are beginning to understand that like illness, disability has a family narrative. Our personal histories influence the way we approach the questions “should I fix my child or should I accept him as he is? What is my moral belief about the human worth and innate goodness of my child as he is?” And these are fundamental questions for CP and developmental clinicians too. Honest answers to those questions shared and agreed between family and professionals should form the foundation for a therapeutic approach. And the periodic check-up questions should be “Is this approach helping our child to do what he wants to do? Is the approach helping our family live the kind of life that we value, given the givens? If not, how we can we change our approach?”

I used to think that therapies and interventions had just pass or fail grades. And that as a parent, I was either a hero or a total loss. These beliefs are false and simplistic. The fact is that all of us have limited potential, but recognizing where our talents and interests lie, we aspire to be the best we can be. Experience teaches us to identify our goals on the basis of Peter Rosenbaum and Jan Willem Gorter’s “F Words in Childhood Disability”: function, family, fun, fitness, friends and future. And we reach our goals with the help of others, as a team. It’s no different between families and members of our professional treatment team.

So here are the questions that I suggest professionals who are treating our children with disabilities ask themselves before speaking with families:

How can I help families develop a concrete plan for intervention based on their personal freedom and choice? How I can support that plan in the clinic, in the home and in the schoolroom? How can everyone in the circle of care be reassured they have an agreed understanding of realities and treatment choices? What protocols can I put in place to keep lines of communication open but not intrusive between appointments? When change occurs, repeat these questions.

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