The Ghost Guideline #WILTW

This is the 156th #WILTW

Improved digital accessibility via smartphones has transformed access to information for health care professionals. A variety of apps exist, some accredited by national organisations such as the National Institute for Health and Care Excellence  (e.g. NICE National Formulary for Children: iOS or Android) and some approved by extremely stringent regulators such as the Medicine and Healthcare products regulatory authority (MHRA). Mersey Burns (iOS or Android), an award winning programme for calculating burn area percentages,  was the first app approved by the MHRA and such is its ease of use it’s downloaded much further afield than the North-West.

For direction on your own institutions’s preferred approach to managing certain conditions you need to look things up on local servers. Sadly, and I have never been given an adequate legal explanation for this, hospitals rarely allow their guidance to be made public. This means if staff don’t have quick access to a computer they need to find an old guidelines folder hidden away in the recess of a desk. The Royal Children’s Hospital Melbourne have taken a far more pragmatic approach and allow anyone access to their clinical practice guidelines. It’s no surprise then to see the format (content!) of their guidelines emulated around the UK.

Huge amounts of resource are used in trying to get doctors and nurses to deliver evidence based treatments and care. Easier access to guidelines should result in more patients receiving the most clinically appropriate and effective treatment (which may often be no treatment in paediatrics). However clearly laid down ‘best practice’ is often ignored and poor practice can persist simply because it has been heard on the ‘grapevine’. This ghost guidance, which can’t be found on any website, manuscript or protocol can be pervasive throughout an organisation. The speed at which it becomes known to new-starters is incredible given it can take up to 17 years for some practices to be adopted.

House rules are not just about treatments but often relate to cultures and behaviours and can be incredibly stifling. This latter type of ghost guidance is often applied inequitably and inconsistently making it divisive but also difficult to remove. Conversely some ghost guidance is behind the emergence of positive deviance and may well be an informal method of spreading learning from excellence. It’s certainly not a new phenomena and forms of house rules were first defined by Stephen Bergman, writing as Samuel Shem, in “The House of God“.

Some of the house rules from Samuel Shem’s “The House of God”

In researching for this blog I discovered that Stephen had added to the original house rules first published in the 1978.

Law 14 : Connection comes first. This applies not only in medicine, but in any of your significant relationships. If you are connected, you can talk about anything, and deal with anything; if you’re not connected, you can’t talk about anything, or deal with anything. Isolation is deadly, connection heals.

Law 15 : Learn empathy. Put yourself in the other person’s shoes, feelingly. When you find someone who shows empathy, follow, watch, and learn.

Law 16 : Speak up. If you see a wrong in the medical system, speak out and up. It is not only important to call attention the wrongs in the system, it is essential for your survival as a human being.

These seem like the types of ghost guidance that should be written down and shared…

What have you learnt this week? #WILTW

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4 thoughts on “The Ghost Guideline #WILTW”

  1. Let’s not forget “if you don’t take a temperature you won’t find a fever”. An adage that can be adapted to, “if the child’s not monitored they won’t desaturate”, something many of us will consider for the little one we can’t discharge because a kind soul puts them in ‘wafted oxygen’ for some fleeting, slight desats in sleep. The sats level we’ll tolerate continues to vary from hospital to hospital inspite of the excellent paper from 2 years ago that showed that anything in the 90s should be safe.

  2. I’ve been spending the last six months or so comparing adult and paediatric guidelines on behalf of the Victorian Paediatric Care Network. The challenge I have found is not paediatric guidelines – both the RCH and NSW are great – but finding universal adult practice guidelines to compare against.

    One of the main reasons we set up DFTB was to share resources and knowledge rather than keep it hidden and proprietry. I still encounter doctors, often those rotating through rather than paeds trainees, whose knowledge is based on textbooks. The current edition of my colleges recommended textbook Camerons Textbook of Paediatric Emergency Medicine, the 2nd edition, was published in 2011. A new edition is on the way but a lot has changed in the last six years.

  3. GOSH guidelines are public access, and incredibly useful (bearing in mind the caveats about different populations and relevance)
    What’s more worrying are when guidelines exist, but are buried away as different snippets across >10 different document, so that writing a discharge plan for a child with a known condition involves opening multiple different documents and extracting a fragment of useful information from each to generate a plan that should be fairly standard

  4. Adopting, “ghost guideline,” for my workplace. Consistently told, ” We don’t do that here” (often demonstrably untrue) by a nurse educator who is supposedly a clinical resource person. Phrase I’d not heard since student nursing days 25yrs ago! Scary when new to a workplace and left floundering for guidance. This is Paeds- Neonates! I need the tools to do my job.

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