Thursday, 31 March 2016

Frailty is not a diagnosis, it is a question.

A little while ago, I decided to give Henry James a go. I sat down, in some rented cottage on a week off, curled up on a sofa and settled down with my new copy of The Turn of the Screw. It's rare I buy physical books these days - just my favourites (The Gormenghast Trilogy, The Catcher in the Rye, or The Meaning of Liff), or the ones I think will make me look erudite if seen on my bookshelf......I clearly, therefore, had big hopes for Henry James.

How wrong I was. I rarely hate a writer, but boy, did I hate Henry James. He made me angry. I felt misled, cheated even. How could a writer like him enjoy such a strong reputation after so many years? Surely, we should have worked out by now how sanctimonious and unnecessary his style of prose is. I don't know where the book is now. I may have used it for kindling.

Rarely have I been has my experience of reading a new writer been so divergent from my expectations. I was almost affronted. I was certainly miffed that I had given over good holiday time to him. Some writers grab you, others enthrall you; some flourish language like a paint brush. James clubs you with it, and then filibusters you. His sentences go on for ever. I seem to recall that he does rather like a semi-colon; who doesn't? He seems to use them, however, to link interminable independent clauses, until you forget what he was originally going on about. He approaches meaning tangentially, but never bloody spits out what he actually means. He doesn't seem to tell stories, he seems to mock your linguistic simplicity, while writing his curlicues of sentences, and bamboozling you with his grammatical purity.

If, as I do, the only thing you know about Henry James is the writing of his you have read, then, like me, you may well imagine him to have been some pompous man, who would stand by his mantelpiece telling you why he is forever right, and everyone else is forever wrong. I imagine he didn't have opinions, he had facts, polished out of the granite of his own intellect - unyielding and forever set.

It troubles me that I am so troubled by my experience of Henry James. It's not, I suppose, his fault that I hated reading his work so much: I'm the fool who carried on, when I could have stopped and switched over to something more personally edifying. Yet, I carried on. And I know why I did.

Henry James is part of the lexicon of good writers, and his reputation has persisted over the years, and generations. Writers continue to be read for two main reasons: they wrote something really good, or they wrote something that was loved enough by sufficient people at one time to be included in the teaching syllabus, and never be removed, even when tastes changed. Sometimes it seems as if particular literature continues to be admired in the fashion of some intellectual shibboleth, whereby those who know why it should be admired can seek each other out, and find comfort with each other.

How many writers have been over-read, over-analysed, and under-appreciated by virtue of being included as compulsory texts in English literature courses? If I had been made to read Henry James at school, I might even have given up reading.

You are probably thinking that I need to let this go, and you are right. Indeed, I thought I had done, until I was reminded of my thoughts about Henry James at a recent conference about frailty. Throughout the day, I heard lots of different people tell me stories about how they had adapted their services to better identify their patients with frailty. A lot of work had gone into to what they had done, and to be fair, their services were better aligned now than they had ever been to meet the needs of their patients. Except that I kept thinking 'So what?'

What was happening with this knowledge that they had frail patients? There was some care planning, there were some advanced decisions about what they would do in the event of a crisis, but fundamentally, the services that were available to these frail patients were the same, unadapted services that had been available to them all along. The actual delivery of medical care, and associated services was unchanged. They were still admitted to hospital, they were still expected to go to clinic appointments, they were still subjected to the various and varied inputs of multiple, unaligned specialists services.

Yet throughout the day, we were asked to celebrate the identification of frailty, while people were still unsure as to what they were going to do with that new knowledge, or what difference it makes to patients.

The identification of frailty is important, but only when it makes a difference to how that patient will be cared for. While we have moved a long way in understanding that frailty is an important concept, it seems as if that is as far as we have got. The concept has entered the modern medical lexicon but we are still some way off having a clear understanding of what to do with it. Frailty is not-curable, and only modestly modifiable.

However, knowing that patients are frail gives you the opportunity to frame differently your approach to patients. It is the flag that triggers the question, 'What are we trying to achieve with this patient?', or 'What is important to this person, and how can we help them most to achieve what it is that they want to achieve?' The answers to these questions are as varied as the patients themselves: for some the goal is to improve breathlessness, or to be free of pain. For others, it is to go to their grand-daughter's wedding, or finish the book they are writing. Success might also be not having to see a doctor or go to a hospital.

Knowing what to do with frail patients, therefore, is framed by knowing what that individual wants to achieve, and how you can help them do it. It is underpinned by having an approach to individuals that allows you to be as flexible as their varied ambitions. Identifying that someone is frail is the moment that you can realise that that person's goals probably aren't, or can't, be restoration to full health. And being able to act upon that knowledge is only possible if you and your teams operate in a way that allows them to be flexible in how they help.

The fundamental difference that this requires is a team-based approach centred on problem-solving on behalf of the patient, and doing what it is they need, regardless of what it is that they need. I am not saying that community health teams need to be able to do whatever it is that patients ask, but they should be open to the idea of helping them achieve their goals. We once had a patient whose dog died, and the absence of this beloved dog was having a huge impact on their sense of well-being. We put them in touch with a charity that could help them get another dog. It can be that simple.

So what's this got to do with Henry James? The connection is perhaps loose, but I read Henry James because I had heard that he was a good writer, but I never asked anyone why he was thought to be a good writer. In just the same way, I saw lots of people enthusiastically nodding at the suggestion that identifying frailty is a good idea, but I saw very few people ask why.

When trying anything new, it is important to have a clear sense of what you are doing, and why you are doing it. Without that kind of face validity, you are scrabbling round in the dark, hoping beyond hope, to land on the right answer.


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