I’ve been in Berlin at a workshop about evidence based medicine, narratives and decision aids for the last couple of days. This involved discussions around what ‘scientific’ (cough cough) evidence tells us, the stories people tell about their experiences and resources (decision aids) produced to help guide people through various treatment options. (Decision aids are largely for when options are evenly balanced in terms of pros and cons and are designed to help people make decisions based on what’s important to them). There’s a bit of an issue around using stories in decision aids because people’s experiences are more persuasive than numbers and we don’t know why or how they ‘work’. Interestingly 84% of decision aids include stories which makes some in the decision aid world a bit uneasy.
A newish (well nearly two years now) work hazard involves how to deal with questions about children from newly acquainted colleagues. This is tricky for all sorts of reasons. Do I tell or don’t I? Do I discount LB for the sake of an even interaction [NOOOOO] or tell which is, in any circumstances, a bit of an interactional bomb.
I’d already learned that if you avoid mention of death straight away in the kid conversations you can open yourself up to further questions that almost inevitably lead to having to say, retrospectively, ‘Er, well actually LB died’, and that’s just off the scale of awkward.
The context of LB’s death makes this all the more complex. A set of ingredients, no chef and no recipe. And different utensils, weighing scales and oven. Each time. A consistent and continual recipe for (interactional) disaster.
I came a bit of a cropper with this question on a trip to the States last year when, after 18 hours of (delayed) travelling and a substantial time difference, it cropped up unexpectedly in a wonderfully atmospheric Madison beer house. I couldn’t think what to say, became (literally) tongue tied and crumbled.
This week, it was a beautiful spring evening. The small group of us were walking along the bank of the river Spree in twos and threes. The person I was walking with had been a doula so it was almost inevitable that the question would crop up. It was cool. We chatted about LB and other stuff. When I was asked again later by a someone else, I said ‘Four now, used to be five’. There was a moments pause and then we carried on with other talk.
I was pretty chuffed about this and chittered away on twitter with various people later. The following evening the workshop had finished and three of us were left in the restaurant. Both women had young children and conversation turned to kids and safety. Letting them walk home alone and general protective ‘mum’ stuff. I don’t know how to describe the physical sensations I experienced, sitting in a public place, with images of shadowing LB every moment he was outside pinging around my head. Careful and carefree memories. Baby steps on slides and hilarious escalator moments. No hint of the darkness to come. It was like every piece of my body wanted to run in a different direction as my brain slowly disintegrated.
We left the restaurant and headed back to the hotel. One woman put her arm through mine, gave me a squeeze and said that seemed to have been a bit close to home. Tears by the Spree. We went to the hotel bar, drank beer, talked about LB, cried a bit more and had a bloody good laugh.
There is no answer to what to do. Maybe there should be an interactional decision aid for bereaved families (joking). But I was struck by Nick’s comment on whether it gets easier over time.
I think he might be right.
[And because I think stories are essential in helping people to make sense of things, I’ll shamelessly plug Healthtalk.org which has collections about families experiences of traumatic death and suicide.]