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?!