Sunday, 7 February 2016

How Simple Should A One Page Profile Be?

It was great to wake up this morning to find an article about the End Of Life Timeline Planner published in today's Sunday Mail.

Bringing ideas from person centred approaches developed over years by great teachers like John OBrien, Michael Smull and Helen Sanderson into the field of End Of Life Care is clearly receiving an immediate and warm response.

Personalisation in healthcare is an idea whose time has come, and person centred thinking is a key way to help deliver it.

What I would really like people to understand is that the values and approaches brought together in person centred thinking apply to all human beings: We all have gifts that we need to express, we all have hopes and fears, we all have things that are important to us, and we all need support. As a human being facing the end of my life, it is becoming important for me to make sure that people around me understand what makes good support for me, and this is the purpose of the planner.

Person Centred Thinking tools have been expressly designed to be simple things. If we can keep medical jargon out of the way, we can find ways to help people have important conversations about what matters to them. I've found Fink cards are brilliant as a way of generating rich and deep conversations about topics we might normally shy away from.

My worry about the timeline planner is that it is almost too complex, as it has no less than 25 fields to complete. Thankfully Helen Sanderson has shown us how it can be easily simplified further by making it into a number of consecutive one page profiles.

Of course not everybody agrees that simpler is better. Human beings are deeply complex creatures. Can we really sum up in one page the essence of what is human, when it took Tolstoy and Proust thousands of pages, and they still didn't fully explicate it? Is it actually an insult to the person to imagine that this is possible? One page about your whole life? One page about a precious human personality? Is that all?

I think it comes down to understanding what the purpose of a person centred thinking tool actually is:
It is a way of helping us gain choice and control over our lives in difficult situations, at times when it's very easy for the medical machine to grind over what really matters to us.

So we need simple ways to express what we feel is most important to us, and what is the very best support for us, complicated jargon is out. Having to fit everything into one page forces us to think about what is the very most important. It can be a harsh discipline. Michelle Livesley is somebody who has thought hard about what makes a one page profile work: she is clear that they need to be absolutely specific about what makes good support, and they need to be assertive: if something is very important to me, then it is not optional. It MUST happen.

So I'm arguing that the format of a good tool is very simple because keeping it simple helps the person and their family write it well.

And a one page profile is useless unless it transfers its message quickly and efficiently to care staff who may have little time to read through documentation. It has to be easy to read as well as easy to write.

It is a tool to be used practically in everyday situations at end of life. Making it easy for care staff to understand and use is just as important as helping the person and their family to write it. In my final days, I need my wishes to absolutely clear to everyone involved in my care, without ambiguity and vagueness. The simpler and clearer I make it, the less room for misinterpretation.

I've sat in committees that have tried to design good tools. "Have we covered xxx?" is the deadly question. Gradually tools grow like weeds from something beautifully simple practical and useful into tortured monsters of complexity. And every time a new layer of complexity is added, a little of who the person is is lost.

So I find simplicity beautiful for a reason. Simplicity is practical. Simplicity forces us to think of what is most important. Simplicity makes tools easier both for the person writing and the person reading. Simplicity is strong. As Leonardo Da Vinci said "Simplicity is the ultimate sophistication".

1 comment:

  1. I think there should definitely be a blank final wishes statement provided for NHS patients whether they are terminally ill or not, a bit like a living will. I have seen both my parents grown old frail and sick then die and know they didn't die where they wanted to home. Neither of them had a family member with them when they passed. My mum had cancer and I know she wouldn't have wanted to be told she was dying because it would have frightened her and I know this would have been agonising for me to deal with. Unfortunately the doctors wouldn't tell me anything right up to the very end so I couldn't make any plans...and I work for the NHS. I think like wills end of life care would ideally be done whilst people were still well. My mother was taken from a nursing home when she slipped into unconsciousness because she didn't understand the consequences and had asked to go to hospital if she was unwell. In A & E she was given 40% oxygen and after several hours this interrupted the natural dying process and she regained consciousness. Whilst she was still unconscious she was put on the Liverpool Care Pathway which I was okay with because I had read up on the dying process and knew it was imminent. Unfortunately my brother was in complete denial and had read all the bad publicity and insisted she came off it but that happened anyway when she regained consciousness after being pumped full of oxygen. The fact was she was dying and all her major organs were failing one by one, she was brought back only for me to have to hold her hand whilst I watched her heart jumping around in her chest during a heart attack. When she slipped back into unconsciousness following this, pressure on the ward meant they decided to move her during my vigal and my brother had walked in still insisting she was fine and claiming the hospital were trying to speed up her death because she was old. I ran out of the hospital because my nerves were shredded and I never saw her again, she died shortly after I left even though the very last words to me were 'don't leave me'. It is so important people have a say before they are in my mothers situation. I think it's a cruel thing for people to be told the worst when they are in a very vulnerable state and sometimes they have to be told in case they haven't made any plans, a will or expressed wishes about a funeral etc but ideally for older people they should just be comfortable and allowed to slip off without too much medical intervention. My dad had a massive heart attack actually mid rant at a consultant who insisted he ought to have yet another blood test he didn't want. He looked monstrous after the resuscitation attempt failed it must have been horrific for him in his final moments he was terribly bruised and swollen and all he wanted to do was go home and be left to die in peace. We have definitely got it wrong.