Tuesday, 22 November 2011

Using patient decision aids in the consultation

A few months ago I asked Jon Brassey of Tripdatabase, a clinical search engine or metasearch, if he could ask patient decision aids to the database. Patient decision aids (PDAs) are tools that are made with the aim of helping patients make decisions about treatment options through considering the risks and benefits of options. They are produced by the UK National Prescribing Centre (NPC) and NHS Direct, amongst others. The advantage of having them listed in a metasearch is that I don't have to go round several sites checking if they might have a decision aid on the topic I am interested in.

Tripdatabase is a small but dynamic organisation and it makes great use of social media. Jon uses a Facebook page to get feedback from users, and I was able to give him my suggestion my sending him a tweet. You can see how quickly he responded here, but the short version is that in less than 3 weeks PDAs were added to Trip!

I've recorded the following screencast to show how I used Tripdatabase to share decison making with a patient. In this case the decision to start warfarin to reduce the risks of stroke in atrial fibrillation had been made in secondary care but we were able to review the evidence for this together. We also used the NPC patient decision aid to review the risks and benefits of warfarin treatment.

As you can see the NPC decision aid is not perfect. I don't think that a PDF is the ideal format for exploring this information online. And I don't have access to a colour printer in the surgery so if printing it might be good to have the option to print a version that was not so dependent on colour graphics.

Have you any thoughts on how PDAs can be incorporated into consultations? Please leave a comment!

EDIT 7/2/2012 As I mention in the audio here I explicitly asked this patient's consent to share this story.

EDIT 7/12/2015 Key learning for me in this was that the patient had different concerns to that which I assumed they had. I thought they were worried about inconvenience of warfarin (for given benefit), but they were actually concerned about risk of harm. The decision aid reassured them about risk of harm.


  1. Useful post - thanks Anne Marie. We could do with more interactive, walk-through PDAs I think but they'd require more work to produce and publish.

  2. We hear horror stories all the time about people going though LCP or pallitive care without their consent on choice in Britain. Can you validate that?

  3. By the stage patients are put onto the LCP (which is designed for last 24hours of life), they are often past the stage of being able to indicate consent. Where known, the patient's wishes are definitely taken into account. Certainly any family are consulted.

    If the patient could consent and did not, then they wouldn't be placed on LCP.

    SecretApothecary (a hospital pharmacist).

  4. I agree. By the time we are considering LCP people are usually no longer able to make comments themselves. (Indeed if someone was still at that point and could comment I'd probably think it was too early?)

    We do very much value family input at this difficult time. I show people what the documentation involves and they are usually reassured by it.

  5. The LCP is a pathway intended for the final days and hours of life. If a patient is capable of consenting they are unlikely to be considered for the LCP, and certainly if they didn't consent they wouldn't be placed.

    Next of kin or the persons responsible for the patient's care are usually involved in the decision.

    The LCP is also not a death sentence; if a patient shows signs of recovery/no imminent decline they are removed from the pathway.

    I worked on an elderly ward and only a few terminal patients were placed on the pathway. Both were patients with long-term dementia in hospital for other conditions like pneumonia and heart failure. The dementia was at the point the patients were unable to communicate or even eat or drink - if fed they would move the food around in their mouths or 'pouch' it in their cheeks, unable to know what to do with it. They would pull out any cannulas, drips or dressings.

    Dementia is a terminal illness; degeneration of the brain occurs over a period of time until the centres for eating, drinking and even breathing and the hormonal control centres lose functionality.

    The alternative to the LCP in these patients is to PEG-feed via a tube directly into the stomach or gut which requires invasive surgery in a patient who doesn't understand, will try and pull it out, and who can't 'give consent' to this either. Many patients have care-plans made years earlier compos mentis for no invasive procedures to occur in late-stage dementia.

    The patients I saw were very distressed by being made to wear oxygen masks, to have doctors examine them, to have nurses try and feed them or wash them, but all these things are seen to be for their own good. When placed on the pathway both patients passed away the following day, with dignity, and appeared very serene.

    The LCP doesn't preclude any symptomatic treatment; painkillers or relaxants are still given.

    (Medical Student)

  6. No-one wishes to consent to death but it is inevitable. Thus it becomes a matter of deciding the manner of death, and that is the one that is the most comfortable, the most dignified and the least distressing. At the point this decision is made the patient is unlikely to be conscious and may even express a desire to die. Thus if the patient can't make a decision (if decision is to fight, doctors won't put them on the LCP) then the decision is left up to those who know the patient and the prognosis best, i.e. the health professionals and the person's family.


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