Being told you are in the “mortality relegation zone”

This post is based on an Editorial published in the BMJ on 27 September 2017: Identifying frailty in primary care.

The full article can be read here.

Might the experts themselves be confused?

I recently read a British Geriatrics Society (BGS) blog which was titled:
“Antidementia medication may improve survival in Alzheimer’s disease”.

Having read this blog several times I wrote to the author on the 22nd September 2017 with some questions that arose for me:

Dear Dr Mueller,
I am wondering why you have chosen not to use the term dementia (the clinical syndrome) in this blog – instead you talk about “Alzheimer’s disease” ?

The BNF, section 4.11 is entitled “DRUGS FOR DEMENTIA” and the indications for use of acetylcholinesterase inhibitors are described as:

mild to moderate dementia in Alzheimer’s disease[bolding mine]

I am wondering if you may be asking (or encouraging) professionals to diagnose Alzheimer’s disease out-with the clinical criteria for dementia (DSM and ICD) ? If so what criteria should clinicians follow (research criteria being quite different to internationally standardised clinical criteria).

Might you be able to provide me more details of the evidence that supports this robust conclusion:

“Acetylcholinesterase inhibitors are not only helpful for memory, psychiatric symptoms and functioning, but may also improve survival. They should be strongly considered in every patient diagnosed with Alzheimer’s disease.”

Are you saying that acetylcholinesterase inhibitors are disease modifying? The scientific advisors for Alzheimer’s Society state quite emphatically that they are not and that they do not improve overall outcome? The World Health Organisation say likewise.

Mixed messages can be confusing to the public and professionals alike. The public are already confused about the loose (and unhelpful) use of language by professionals and the media: such that “Alzheimers” is often synonymously misunderstood as dementia.

A few years ago I debated in an RCPsych Congress advocating a timely approach to the diagnosis of dementia. Prof Ballard advocated diagnosing “early Alzheimers disease”. He lost the debate and was not able to give the audience necessary clinical guidelines on how to diagnose “early Alzheimer’s disease” without risking false-positive or false-negative diagnoses of dementia.

Prof Ballard has also stated in a Lancet publication that plaques and tangles may not be “paradigmatic” (the exact quote is below).

I would welcome any thoughts you may have.

With kindest wishes,
Dr Peter Gordon

Footnote:
The 2008 - 2012 period that forms the data for this 
retrospective survival analysis was the period when 
early diagnosis was encouraged and in some instances, 
financially incentivised. 

Might it be that this resulted in a higher number of 
false positive diagnoses of "dementia"? 

Thus, a potential explanation of this "reduced mortality 
in Alzheimer's disease" is that it may actually relate to 
misdiagnosis of non-progressive mild cognitive impairment?

 

“Just a word”

In an official Medical Society Blog the following words were recently used in response to thoughts that I had submitted on a medical subject.  These singular words were put in inverted commas by a most senior healthcare professional who does not know me.

The Medical Society involved has since removed the post:

I share the view of Barrack Obama that we should all try and engage in debate with those who may have different views.

I would suggest that such “one word” approach [with words used to stain] may not encourage helpful debate.

Frailty – nothing about us without us

In September 2016, Professor Martin Vernon, National Clinical Director for Older People and Integrated Care at NHS England stated why diagnosing frailty is important:

In the same month Professor David Oliver had this Acute Perspective published in the British Medical Journal. It attracted over twenty responses many of which, but not all, were supportive.

I submitted this response as I was not convinced that “frailty” was inherently any less likely to stigmatise our older generation:

A year later, Dr Steve Parry, the Vice President of the British Geriatrics Society (BGS) had this perspective  published on the British Geriatrics Society Blog , asking “when does a well-meaning medical fashion become a potentially destructive fad?” This perspective also attracted over twenty responses.

A week later, the former President of the British Geriatrics Society, Professor David Oliver argued why he was “fine with Frailty”:


Dr Shibley Rahman, an Academic in Frailty and Dementia and has outlined why he is of the view that such a model, based on deficits only, if applied to our older generation could cause harm. This article also attracted many responses.


In a recent Acute Perspective Professor Oliver outlined his concern that the British public may not have realistic expectations when it comes to frailty and “progressive dwindling”:

My understanding is that the term “progressive dwindling” was first used by George J. Romanes in this 1893 book:

This is the context in which the term is used:

The dictionary definition of “inutility” is: uselessness or a useless thing or person.


Healthcare Improvement Scotland has been concentrating on frailty as one of its National Improvement initiatives. This first started in April 2012 and so has developed significantly in the five years that have followed. NHS Scotland staff have been reminded to “THINK FRAILTY”. Up until now the focus has been on deficits and how to “screen” for these with “toolkits”.


Back in April 2016 Bergman and Karunananthan, McMaster University were of this view:

“Thus far, research on frailty has been heavily based on establishing associations between various definitions of frailty and poor health outcomes. A limited number of studies on the perspectives of older persons offer a very different characterization of frailty and the potential impact of labelling.

While several expert meetings over the past decade have called for a unified operational definition of frailty, varied definitions continue to abound, suggesting that researchers are still not ready to close the debate on what defines frailty. The integration of findings from the diverse perspectives, including those of the older persons themselves, is essential when considering the potential for a meaningful clinical tool.

Furthermore, studies examining the contribution of frailty in improving prediction of adverse health outcomes are needed in order to assess the potential utility of frailty as a prognostic tool. Despite the enthusiasm of clinicians and researchers to utilize frailty as a prognostic instrument, frailty will only be relevant if it can be empirically demonstrated either that frailty is reversible, or that its adverse outcomes are amenable to intervention.”


In a BBC Radio Scotland “Thought for the Day”, the broadcaster and writer Anna Magnusson recently considered the language that we use in relation to our older generation. I made this short film using her words and voice. I have shared it with Anna Magnusson and she wrote a kind personal response to me:

We are far more than our labels from omphalos

These words from an Edwin Morgan poem resonated with me as a description of the complexity of ageing:

The people best placed to assist in understanding the complexities of ageing and the language best used to describe it are surely the older generation themselves.

If NHS Scotland has been genetically-modified with QI

It is most welcome to hear from Philippa Whitford about positive outcomes of NHS Scotland’s collaborative approach to quality improvement and the learning that this might provide for the rest of the UK. I share Philippa Whitford’s concerns about the potential consequences of competitive systems such as occurs more in NHS England with providers, commissioners and contracts and the inevitable fragmentation that this brings. The integrated approach taken in Scotland along with the engagement of patients and frontline practitioners is indeed something to be most positive about.

However, NHS Scotland’s approach to Quality Improvement is based on what is known as “improvement science”. This is a relatively new approach to science introduced from the USA and based on methodologies from the engineering and airline industries. The Health Foundation, in its ‘Evidence Scan’ found a “real paucity of evidence about the field of improvement science” . The Health Foundation found papers on the conceptual nature of Improvement Science but concluded that: “none of these could be said to be seminal pieces of research acting as building blocks for the field as a whole”.

As far back as 2007 Brent et al identified that “ethical issues arise in QI because attempts to improve quality may inadvertently cause harm, waste scarce resources, or affect some patients unfairly.”

Scotland has two key National Improvement initiatives for older people in acute hospital care. One is for Delirium and the other is for Frailty.

The QI initiative on Delirium was reliant upon “screening tools” that were effectively made mandatory for all those aged 65 years and over admitted to hospital. Healthcare Improvement Scotland measured the “compliance” with the use of these “screening tools” across Scotland. On the wards I was finding that these tools were not infrequently being interpreted as diagnostic and that older people were sometimes considered as lacking in “capacity” on this basis. I was also concerned that this approach could lead to greater use of antipsychotic medication.

The QI initiative on Frailty is currently being implemented across NHS Scotland. This is despite the fact that there is no internationally accepted clinical definition for Frailty. More “screening tools” have been developed by Healthcare Improvement Scotland and “Frailty Hubs” are now being set up in most NHS Boards. It may be worth noting recent high-level disagreement amongst British Geriatricians about the validity of the “Frailty Industry” as one senior Geriatrician described it.

The experience of these national initiatives perhaps highlights the limitations of approaches which work best in mechanical settings. The same success cannot be guaranteed when applied to more complex presentations such as delirium and frailty.

It has recently been stated that “ethical approval is less burdensome” for QI. However I suggest that we must be wary of taking shortcuts that may result in potential harm as well as potential good. This is why ethics and philosophy have an established role in science.

Another risk is that if science is pre-determined as “improvement”, this may limit the acceptance of critical thinking.

Philippa Whitford concludes that in NHS Scotland “Quality improvement has made its way into the DNA of frontline staff”. I share the view that Quality Improvement has much to offer. However, if NHS Scotland has been genetically-modified with QI let us hope that the wider considerations necessary for science are included in the base-code.

Dr Peter J Gordon
Psychiatrist for Older Adults
NHS Scotland

 

We are far more than our labels

“National Improvement” work for older people has focused on Frailty and in NHS Scotland we are reminded by healthcare Improvement Scotland to “THINK frailty”

This short film is based on “thought for the day” by Anna Magnusson, BBC Radio Scotland, Friday 5th August 2017.

Music is “Seeing the future” by Dexter Britain (under common license)

We are far more than our labels from omphalos.