Something’s been bugging me about that recent visit with the neurology team at Toronto Western. Bugging me enough that I have spent some time reflecting on exactly what it was. I realize now my dis-ease has nothing to do with the conversation/meeting itself, but rather the very nature of the referral and its implications. When I look back on our long journey through Ontario’s healthcare system, I see a particular theme repeating itself over and over again.
When one has a complex or mysterious problem, the path of referral goes something like this: see a generalist, get referred to a specialist who knows the condition, get further referred to a sub-specialist who does the procedure for that condition. The scope gets more and more narrow, like a funnel.
I think many patients, and parents of young patients, see this as a journey down a single, inevitable path leading to the grand conclusion. Not as a complex maze that could shoot an unwitting participant down a dark tunnel that lands herself in one of many possible chambers. Viewed through a wider lens, which chamber you end up in can seem almost random. Depends on who you saw last. What they knew. What they read. Whom you’ve met so far. Whether or not you liked the last doctor.
Uberspecialists, like the one guy who does the one procedure for the rarest of conditions, are like special interest groups. They have their own funding, their own agendas, their own perspectives. Like all good scientists and researchers and engineers, they are simply trying to prove a thesis. To support an idea that has possibly been years, decades, in the making. They are looking to see if your case fits with what they have to offer. They are assessing to see if you are a good candidate and whether or not you will be deemed a successful outcome. In other words, do you fit their profile?
Here’s the problem: If you do fit the profile, it’s natural to assume that whatever they’re offering is the right solution. Finer minds than yours and mine have spent a lot of time and money to figure out this one thing. And the specialist doesn’t have the time or inclination or even perspective to state his or her special interest. This path of referral can take many months, and sometimes years – the legitimacy of the path itself is not called into question at that point. The specialist assumes you’re pre-qualified enough and you, the patient or parent, is just happy to talk to someone who finally knows what you’re going through.
I remember the moment I clued in to this. The neurologist was looking Owen up and down, thinking out loud. She recited a high-level checklist, crossing them off one by one. Fixed postures? No. Is he big enough? Yes. Parents understand the surgical risks? Yes. Then, as I relayed in my last post, she said something like, “Well then. There’s no reason not to.” Hm, I thought. That has a ring that’s not sounding quite right.
(This experience reminds me of the process around discovering Owen’s deafness. He was diagnosed at Sick Kids, around 1999-2000. Not sure what they do now but back then, when hearing fell out of a particular decibel range, children were referred immediately to the H.E.A.R. program. Hearing Evaluation And Rehabilitation. Also known as the cochlear implant program. No other options were presented; Owen was put on the list and we started the assessments. When I inquired about other options, they said there were none – they of course meant that there were no other interventions that would restore or simulate hearing, and they were right. But I could easily have taken that to mean ‘this course of action is the only reasonable thing to do’. )
No reason not to. From her perspective, the doctor was absolutely right. And now it’s up to me to figure out what else is right, and also good.
Wow. As someone also navigating the Ontario medical system (with a younger child), I really appreciate the insight of your post. This could have taken me years to figure out but now I can use your insight to help navigate the options. Thank you for posting this.
Wow, what a difficult post. I’ve read it over a few times and I get it. We are, currently, beginning the walk down that road. What it takes to “survive” and make the “right” and “good” decisions, and to keep from being swept up into the vortex is knowledge. Research, research, research…before you see the doc. Not everyone can do it, for whatever reasons and they just fall into line, for better or for worse. It takes strong minds and personalities to stand up to this system, in the end. It is, IMHO, a system that breaks more than supports.
Thanks for your comments Pamela and Claire…
I frequently hear stories of patients (and parents) dissatisfied with their encounters with specialists – and I wonder how much of it is simply because they have different (and possibly opposing) agendas. It’s not going to change on their end any time soon – it’s up to us to sniff it out and see if it still makes sense.
That’s an enlightening and sobering post. I keep thinking about whether we would have done the surgeries Ben had in April if we’d understood what the rehab process would look like.
I think you’re so right that “no reason not to” from the perspective of a surgeon who will just see your child for those few hours of surgery and has their own research agenda can be oceans apart from the many “reasons not to” that a parent can come up with.
I love the photos and hope you keep writing!
The word ‘random’ strikes me. As actual for the reality.
I really appreciate reading your thoughts on this.
I feel as though the doctor(s) should have some sense of the reasons parents might not want to put their child through surgery
I wish I had your patience, or peace with them having an alternate perspective
I struggle with the idea of putting my child through any more medical procedures as all we have done so far has not gone well
I have seen Owen out a few times recently. Hope you are doing well.
To the doctors sometimes it’s just adding another notch on their belt. I had my daughters pediatrician, who is a ped for disabled, medically fragile child tell me, ” I don’t think I could have done what you do ” yes you would I said, if it was your child, ” No, I don’t think I could have, I have great admiration for you “. Just because they care and see the medical crisis that we deal with and they treat, doesn’t mean they have the strength and courage to deal with it from our end. I had to reread your post a couple of times to really understand the point you were making, I think I got it and Im 99.9% sure I agree. We are truly the only ones who have our childrens best interest in mind.
Oh I can’t agree more! It is all a funnel of luck of misfortune!