What is normal? And why that matters …

Over the last week I have spent a fair amount of time reading Julie Johnson, Helen Haskell and Paul Barach’s excellent ‘Case Studies in Patient Safety’ (https://www.amazon.co.uk/Studies-Patient-Safety-Julie-Johnson/dp/1449681549). The book is a thought provoking collection of narratives by 24 patients and relatives who experience the consequences of medical error. It is of significance that Helen Haskell is one of the authors. Helen’s son Lewis Blackman died in 2000 after a chain of avoidable mistakes and Helen has become a passionate advocate of patient safety as president of ‘Mothers Against Medical Error’.

Her recollection of the deterioration of her son following elective surgery is representative for many of the other reports in that the patient and the family sense for several days that things are not right. By the time that the clinical teams grasps that they are witnessing a medial catastrophe it is too late. And this is one of the overwhelming themes of many of the case studies: patients and family trying to raise the alarm, knowing something is not right.

Margaret Murphy also lost her son after a prolonged period of deterioration (http://www.who.int/features/2015/ireland-patient-advocates/en/). Again it is clear that her son and the family knew that things were seriously wrong long before health care professionals. In 2005 she became one of WHO’s first 21 patient advocates. Today Patients for Patient Safety (PFPS) has got global representatives supporting improvements in safety of healthcare, acting as advocates and educating doctors, nurses and students.

The need to trust patients and those close to them is crucial, not least for reasons of patient safety. How come that patients and their loved ones realise that something is amiss despite their lack of medical knowledge? How can they possibly understand the complexity of human pathophysiology better then their care team? The truth is that they mostly don’t have more medical knowledge but they have a unique tool at their disposable that most of those who look after the patient haven’t got:

They know ‘normal’.

They know from many years how a person behaves, moves, feels, looks, and can therefore determine if normality is suspended. Their reference frame of ‘normal’ is the tool that most of their clinical teams (with the exception of longstanding Primary Care physicians) are desperately missing. What might look ‘normal’ for clinicians comparing with the average experience of their previous patients can be clearly ‘abnormal’ for a given patient. And knowing this can be life saving.

Emma Hill from ‘Smart Patients’ (https://www.smartpatients.com/) has summarised this in a comment in The Lancet Oncology in 2014 “… every patient is an expert in their own chosen field, namely themselves and their own life.”(http://www.thelancet.com/pdfs/journals/lanonc/PIIS1470-2045(14)70044-0.pdf)

Interestingly this is also the opening quotation of  Eric Topol’s ‘The Patient Will See You Now’ (https://www.amazon.co.uk/dp/B06XCF7RFF/ref=dp_kinw_strp_1). Topol’s book will feature more in this blog but given the widespread access to resources on the internet it is clear that the patient can soon be expert in more then their own life.

If patients know first: how can we facilitate that this information is available to those tasked to care?

How can we make sure that healthcare professionals belief the ‘expert’?

 

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