Thursday, 11 February 2016

Turning Ideas Into Action

There is a really electric feeling at that point for the first time ever we take an idea and try to turn it into reality. It's electric the first time you do it yourself, even if a million people have already done it, because you prove something to yourself. It's called learning. And when we do exactly the same thing for the first time ever it's called innovating.

And lots of people have taken the ideas in my recent post about maximising choice and control in end of life and are beginning to try them out out too: real innovation happening right now!

Pioneer of person centred thinking and planning Helen Sanderson followed the simple rule in person centred approaches: "Try it out with yourself or your family first, because the closest thing to experiencing using it in real life, is experiencing using it in real life".

So she sat with her mum Carolyn, and helped her own plan for end of life.

She had already started a plan, so they worked together on it further: Here's what they came up with together.
To me, you have captured the essence of a person centred practice as soon as you can sit down with your mum and do it!

Helen also pointed out something: It's quite routine for people like our mortgage advisor or our solicitor to ask us what our plans are for the end of our life, what will we do with our possessions? How will we pay for our funeral? Why is it therefore so rare that nobody medical asks us about our plans for when we die? Could this be something our GP does? Whose job could it be?

We also encouraged as many people as possible to try the new formats out at their own homes, hospices or workplaces, or indeed with their own friends and families. We will have a big online feedback session soon, using the hashtag #maxeolc. Don't forget to use the Advanced Care Planning 'Fink Cards' as a way of opening up really good conversations around end of life.

It's not just in the UK. I sent out an electronic version of the Daily Mail article to my colleagues on the board of The International Learning Community for Person Centred Practices. Some of them have felt driven to action too!

Laura Buckner said "I have shared your work online.  I recently shared it with my cousin (end-stage lung cancer).  I will have lunch next week with a cycling buddy of mine who also happens to be a hospice chaplain; I specifically want to share your work with him and talk about how we can collaborate to bring this to the many patients and their families he supports.

and Michael Smull said "Great article.  I hope it inspires many others to do the same.  I have been sharing your planner here in the US.  I have sent it to some of the federal officials I know and I was showing it the people in charge of social care and health in the Minneapolis area yesterday.   I hope we can help it make a difference here as well"

So please feel free to become part of this process of innovation. Pick up the tools and try them out in your own workplace. Look out for further blogs on this topic, not just from me but from leaders in the field of end of life, and be ready to join in with the twitter conversation #maxeolc when we announce the date!

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".