Since I posted the original idea for parent ‘grand rounds’, much dialogue has taken place! I’m sure no one will be surprised to learn that there is strong support from us regular folks… so I’d like to share some of the (generalized) responses I’ve received from some professionals with whom I’ve corresponded.
- I had a twitter conversation with an old work acquaintance who shared this idea with a physician. The response was an unequivocal No. Unworkable, the doctor (via my friend) said. Risks outweigh the benefits. Limited value. Significant risks. No two cases are alike. Parents aren’t at the same level. My thoughts: Imperialist thinking that started all this power imbalance and disconnect in the first place. Equal parts fear and control. Troubling to note this mindset still exists and depressing to see it on full display. Of course twitter plays a guilty role in this reductionist dialogue, so I leave room for the possibility that there is a more fully-developed argument lurking somewhere behind these tweeted gems.
- Several administrators/professionals offered up examples where this idea is ‘already in place’, citing examples of patient-to-patient matching and buddy/support programs. My thoughts:
- these are well-meaning suggestions pointing to programs that are not at all like what I am suggesting, which speaks to the dearth of actual programs like the one I am suggesting,
- responders possibly missed the point I was making (admittedly poorly) that these programs are not enough. They do nothing to equalize the power imbalance between clinicians and patients – in fact, these programs can sometimes make things worse. My partner, Carsten, gave me permission to quote him from an email exchange on this topic:
Claire (see comments here) says that “parents feel powerless in medical institutions.” She’s right: it’s designed to be that way. The privacy stuff – but more importantly also the belittling, disempowering attempts at relegating the exchanges parents/patients have with one another to the realm of emotional support is a balkanization/ghetto-ization of the patient. This kind of mechanism is widely used everywhere – hospitals, medical practices, prisons, psychiatric wards, schools – to protect the knowledge of the specialists, and to ensure order and hegemony in its delivery. Institutions benefit tremendously from having only “one version of the truth” and will do almost anything to protect it. Because what they are protecting is their supremacy, their continuing ability to function – their jobs.
What you’re suggesting is deeply subversive. The first wave of responses is the “friendly wave” – they are pretending that it already exists by pointing to their initiatives where patients/parents are relegated to the realm of emotional support structures.
Subversive?! How intriguing. I see Carsten’s point now, although I made the suggestion quite innocently, thinking it was such a no-brainer it would be widely embraced. I like Carsten’s calling-out of what often amounts to mollifying strategies, which can subdue and distract patients from noticing their lack of real participation.
- Some participants in the dialogue engaged with the suggestion, gave their own feedback:
- in fast-moving diseases like some cancers, time is of the essence and these sorts of workshops may not come around at convenient times.
- Logistics, expense, accessibility?
My response: Great issues/questions. Let’s talk more.
- A couple of participants in my email conversations responded with real interest and a spirit of exploration and curiosity. Said they would send the idea to others in their organization and see what they think, start a dialogue. My response: Where do I sign up?!
I’ve done years of work as a Parent Co-Chair with an organization called The National Institute for Children’s Healthcare Quality. Their work is in the area of quality improvement, and they’ve made valiant efforts to include parent voices in all areas of the process of improving healthcare for children. However, we’re talking a beast here, and the work is slow. I believe the patient/doctor relationship IS changing — albeit slowly — and we’re really just at the tip of possibility. I have long thought it should be a requirement in medical school that students spend a significant amount of time in the home of a family who cares for a child with special healthcare needs — as a shadow and an observer. I agree with the comment that the first wave if always friendly — paternalistic, even. You can see it as it happens. But with much perseverance, it CAN be overturned. I feel like I have in my own life —
I’m ready, though, to have a grand round. I have a case that I’d like the best minds (those of parents) to discuss.
First of all your blog is amazing. I was reflecting on some of the comments you posted. “No two cases are alike. Parents aren’t at the same level.” Well why would you want them to be? I mean we cannot homogenize the experiences of groups of people into a particular category of analysis because then we end up ignoring the diversity of these families we diversity of the experiences. I think (I could be wrong) the most important part of this endeavor is to create a safe space that allows these discussions to happen. This will in turn shape itself and as time progresses as more people attend only then will we be able to tell what can be improved. It is important to allow for parents to actively engage and participate in their childs “big decisions”. It also moves forward beyond the emotional component of support groups. Which are definitely well intended but some families are seeking something different. This would allow for critical input. Not everyone has the support of family or friends who although with the best of intentions know how to support in providing critical input or ideas in their child’s treatment. I dont think the point is to have all the answers, it is about having a starting point. In time it will take a shape of it’s own and those involved can dictate the direction it takes or how often these discussions or meet ups take place Why do it at an organization why not at an alternative space library, some coffee shops, community centre…drinks/appetizers….? I realized this is really long sorry about that…
I don’t know how I missed this post but must put it down to the internet problems I discussed with you. In several of my posts I discuss these issues as well, and they have been based on my experiences in dealing with physicians. I disagree somewhat with Elizabeth though; Doctor patient relationships are changing but for the worse. As patients and family are becoming educated, empowered (yes often to the detriment of the situation) Physicians are feeling more threatened and reacting accordingly, just as they have done in Ontario regarding alternative, or complementary medicine which they have successfully squashed as viable partnerships since its rise in the 90’s.
I often need to debate physician’s decision making concerning my son and was often able to convince them of the need to change course. On occasion I got it wrong and I was thankful for the learning dialogue but I was always awarded respect simply because of my ability to communicate my medical knowledge in relevant fashion to the physician.
Now, even this is no longer sufficient and that is the change I’m talking about. Now, after a discourse on methodology concerning my son, and upon reaching a stalemate, meaning that the option is to say, ‘well, both points of view are valid, medically speaking, but we need to choose one and I (the physician) am going to choose the method I feel most comfortable with’, has now changed to “well, you’re not an actual doctor are you?” This has happened to me on several occasions but only within the last year. My regular physicians don’t do this as we have found our modus vivendi. It is their ego talking. The funniest part of course is when the very next day other physicians notify me that they’ve decided to implement my strategy.
Where does this leave us Jennifer? When everyone is barricading themselves against the ‘onslaught’ of reason?
Hi Eric – glad as always to have you here!
Perhaps we can think of these experiences as the pendulum swinging, to find its place. So much threat, I think, to medical egos, given how much access to information we all have. The doctor’s contribution is no longer just about information or even context – we pesky patients and parents all talk to each other too much! (Thank you, internet). I’m all for dialogue and debate and weighing things out loud with experts… and sounds like you’re game for that too. The discouraging part is that we, the parents, have so much more at stake and are not valued to a proportional degree. It’s all so very tiring. [Hugs to you and Segev!]