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.]
mydaftlife 
I don’t know how you do this. My son has only recently escaped the mental health system after a quite unnecessary nineteen month stay there. A lot of dreadful things happened to him and we only just avoided the almost inevitable sentence to ‘a hospital in Northampton’. We are in the process of asking for further investigation into several incidents and decisions because I refuse to let this drop. As time goes by, I get more and more angry, not less.
Thank you Sara – thank you, that’s all for now – I can’t express my feelings but I can say thank you, Jane
Sent from my iPhone
A family moved into our area a few years ago when my children were small and, as part of the usual getting to know you conversation I asked about their children. They immediately told us about their oldest son who had been killed at the age of 6 in a road accident 3 or 4 years previously. His mother was tearful telling us, and explained how she had managed since. It was unexpected and shocking to me then but quickly made the relationship much less superficial.
It was totally necessary to knowing them as a family as their son and his death was such a core part of who they were, and their history as a family.Once everyone knew about their son they could just be themselves, with bad and good days. It meant, I hope, that no-one said anything inadvertently hurtful or thoughtless.
I wonder if, when someone you meet casually, and may never meet again, asks how many children you have, it might be better to say right out what happened to LB. Then they have the option of saying how sorry they are without asking further questions. And if you do continue to see them, you don’t have to tell them at a later date, when they might have wished they had known sooner.
I’m so glad you got to talk about LB with that other mother in the end. I am sure she was glad you did.
With 3 Learning Disabled, dying needlessly per day or is it week, according to government statistics, it appears death as the ultimate abuse and clearly happening as they speak, the main thing to discuss.
The reasons why they are abused and dies, is all is because of these professionals’ happy clappy money wasting talk, when in reality, the care for all is now prescribed for profit, by itinerant agency/ zero hour care. with billions of managers and investors merely collecting the profit..
Finolamoss,That comment may have helped you, but I fail to see a syllable of comfort for Sara. Have you any idea how abrasive you (often) sound?
Probably unintentional but you always seem to bang on about your own agenda, with no apparent awareness of devastation you leave in your wake,and I’m not entirely sure this is correct forum for it.
Could you please consider others feelings when you post your data, rhetoric and negative laden comments. You have our sympathy, but this not appropriate here.
Em, I guess I get a boot up the backside too so a final comment, just the mention of workshops sends me into a tail spin. Somewhere at sometime a group of academics will have deliberated over smiley faces versus frowning faces for non verbal pain assessment. No bugger offers these to disabled patients dying in agony in reality.
Decision aids for when pros and cons are balanced re medical treatment options,do people really have workshops about them ? obviously they do. Does anyone ever use said aid when the patient is disabled .Not heavily in the NHS in my experience. Unless ” you are in the last chance saloon sign here,oh you can’t ” was pre their use. I suspect decision aid use along with the provision of relevant patient information and alert cards is at the consultants discretion when the patient is severely disabled. For pros and cons read you are going to get worse and this stuff is dangerous but I haven’t the time or inclination to discuss it with you “unfortunate girl “.
So awkward – mine is what do I say when people refer to me as ‘Mum’. Should I enter that awful zone of – ‘I’m the auntie – their mum died’ or should I risk the agreeing nod and hope the kids don’t speak up. Either way it causes a wrench that’ll never get easier. Unfortunately it just becomes the norm.
Parent-figures http://moregooddays.co.uk/?p=273
Sorry Finola, I don’t understand your last post. Nic, no boots up the backside and agree with you about decision aids and disabled children/adults. 🙂
Sorry, for posting that last comment at 3.17 today.
I thought it was an email sent to a friend, and did not intend it to appear in your site .
Would be grateful, if you could remove, as I do not want to cause any offence.
Sorry would add emoticon but don’t know how..
Sorted 🙂
Smiley face is typing this : plus this )
Thanks for sorting. Back to Sunday roast. Best wishes, Finola