"Shared decision-making: the case for letting patients decide which choice is best"

[Dolphin]

Free full text: http://findarticles.com/p/articles/mi_m0689/is_n3_v45/ai_19891674/

Shared decision-making: the case for letting patients decide which choice is best.
J Fam Pract. 1997 Sep;45(3):205-8.
Woolf SH.

I read this after seeing it referenced in:

"Potential benefits, limitations, and harms of clinical guidelines"-Woolf et al., '99: http://forums.phoenixrising.me/show...ms-of-clinical-guidelines-quot-Woolf-et-al-99

It's a relatively easy read: no biology really (except mention of a few tests a doctor can do) and no maths (except a few percentages).

It's about physician paternalism (it uses this term twice I think - at least once anyway) - about physicians making decisions for patients rather than discussing the options with them.

I think this is relevant in terms of managing the condition: where often patients are pushed onto a rehab approach rather than being given the option of a pacing approach.

 

[Enid]

Nice to see Dolphin (re paternalism amongst too many). I well recall whilst tests/investigations carried out for severe GI problems and the few words I was allowed by the Consultant met with "you think too much"

 

[Marco]

This occured to me thinking about Alex's blog - the blame game.

In the UK context clinicians' (read GPs) judgements are very much subordinate to the NICE guidelines and we can see what happens when physicians overstep these.

With regard to CBT and GET, as I understand the UK situation, ME/CFS patients are referred to 'specialist centres' by their GPs (who are probly glad to see the back of them in many cases). Regardless, the centres provide an outsourced service to GPs.

I wonder would it make any impact if :

(a) ME/CFS patients refused the referral on the basis that the benefits of CBT have been overstated and the physiological evidence that GET may be detrimental to their health; or

(b) if willing to go along with it, report back to their GP with a full an accurate account of how useful/useless or detrimental they found it and what other therapies might now be considered?

Would a high level of 'customer' dissatisfaction (if this were the case) begin to be noticed?

 

[Enid]

I'm very certain those I saw very glad to the back of me (with one exception - Neurologist who had a vague idea about the viral involvement and privately apologised for what he couldn't yet understand).

One bright hope for all who may have to follow - three young Docs in Accident and Emergency having foisted a psychiatrist on me eventually lined up to admit - "you know when you are ill". Mountains to move and we will get there. Who listens any more.

Hey and I couldn't remember the day or cared in your stinking "profession" Simon Wessely. Try passings out yoursellf - oh what a joke.

 

[Dolphin]

This occured to me thinking about Alex's blog - the blame game.

In the UK context clinicians' (read GPs) judgements are very much subordinate to the NICE guidelines and we can see what happens when physicians overstep these.

With regard to CBT and GET, as I understand the UK situation, ME/CFS patients are referred to 'specialist centres' by their GPs (who are probly glad to see the back of them in many cases). Regardless, the centres provide an outsourced service to GPs.

I wonder would it make any impact if :

(a) ME/CFS patients refused the referral on the basis that the benefits of CBT have been overstated and the physiological evidence that GET may be detrimental to their health;

I have read some patients say they feel some pressure to go to keep their GP happy.

or

(b) if willing to go along with it, report back to their GP with a full an accurate account of how useful/useless or detrimental they found it and what other therapies might now be considered?

The number of individuals per GP might be small e.g. if 40,000 GPs in the UK or whatever.

Would a high level of 'customer' dissatisfaction (if this were the case) begin to be noticed?

Not sure how the system works. It is an interesting idea.
CFS POD have collected some information from the services - however I think they may be a bit selective in what they release.