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!

Maximising Choice and Control in End of Life Planning

Let's make it clear that I have no intention of dying for as long as possible into the future!

I intend to take every opportunity I can, despite my stage 4 metastatic bowel cancer to live and enjoy life. If a chance comes up for more chemo or a clinical trial, I'm going to take it.

However, I also have to be realistic about my condition and where it's likely to take me. I have quite an aggressive cancer that has mutated in unexpected ways. I may have years, in the worst case scenario it is just months.

Of course it's hard to pin down how fast or slow the process of my death will be. Prognoses are notoriously unreliable and should be treated with caution, as rough guidelines rather than carved into stone. Nobody should get hung up on prognoses, and if anything, they are a challenge to go out and live your life as best you can! It's already clear to me that good planning helps people live as well as possible until they die.

So I've been reading about and talking to people about 'End Of Life Planning', which I've found out involves a whole range of documents. I've been given packs full of quite daunting legalistic documents, that I feel I would need support from professionals to complete because of the difficult language they use. However, I also got hold of some great End Of Life 'Fink Cards' made by Sarah Russell and Helen Sanderson. These are a much easier way of starting a conversation.

An example of one of the Fink Cards

You can sit with your family and take turns to pull out a card, and then have a conversation about the question on the card. It works out you might only end up discussing two or three of the questions, as the conversations can quite quickly become in depth and cover lots of ground. The first time I tried this with my wife, we had been talking about the very first card for about 20 minutes, and it felt like we were really getting somewhere, then my phone rang: it was the hospital who needed me to come back in for another scan! I felt this showed how easily medical priorities can interrupt our personal priorities.

I have a history of working in Person Centred Planning and Thinking which is all about finding ways to enable the person to put their own most important wishes into the way they are supported, so that what is important to them actually happens in their lives, and they are supported in a way that is consistent with who they are. I was also pretty interested in the questions Atul Gawande has been asking about the things people really need to have conversations about at End Of Life, so that their wishes are truly heard.

I thought to myself, that, from my own experience, there must be simpler, more person centred ways of creating and capturing information from conversations about our wishes for the end of our lives. Simpler ways that would be more led by the person themselves, and involve their family and closest loved ones as the key decision makers and information gatherers.

My blogging about the possibilities of creating something useful at end of life was timely because it reached out to other people already thinking about this, including some of the area's leading academics,  hospice providers and innovators in health and social care. These people are keen to try out different formats to see what will work best for people.

So I jumped in by creating a grid with a few important questions down the left, and a timescale going across to see whether it would work for me:

Max Neill End Of Life Timeline Planner

In a way I see this as a very first attempt. I have lots to add and change. I also think the different headings might be tweaked and changed, although I do think they are 'open' enough to contain a lot of what is most important to people at end of life, and much of what Atul Gawande was keen to capture.

The biggest problem I can see with my format is that it has 25 boxes! The very best tools I've seen in Person Centred Thinking have many fewer, like Michael Smull's "Important To/Important For" or Helen Sanderson's One Page Profiles. Such a 'big' tool might be too challenging to attempt all in one go, and might be just as daunting as some of those legalistic documents.

I passed this grid over to Helen Sanderson, who worked on how it might work as a one page tool. She has taken it and done quite remarkable things to it and actually made it into a series of one pagers to reflect how things change over time. Here's a couple of examples:

1 page on my wishes: When I have months to live

One page on my wishes: When I have weeks to live

This kind of brilliant simplicity might offer people a much easier format for their discussions, which they could combine with conversation starters such as Fink Cards. I can see that I still need to do plenty of thinking, and add much more of my own detail in the different headings, but this may be made easier for me and my family and friends by using this cleaner, less crowded 'one page' approach.

So as far as I'm concerned this is a work in progress. I'd be interested in people's ideas about getting the questions and headings exactly right. A group of us (Helen Sanderson, Sarah Russell, Sharon Hudson and Philip Ball) kicked the various formats around and speculated about how they might be tried out and improved in a practical and invigorating online discussion.

Online fun

We'd love other people to get involved and 'crowdsource' ideas about how we can maximise the way we gather people's end of life wishes so that it works for people and can be led by them,  rather than being a 'top down' process dominated by the professionals.

Also Sarah Russell is going to blog soon about how these ideas for formats fit in with current research, legislation and best practice at end of life, and we will also be bringing the discussion to twitter so that lots more people can join in.

Watch this space as we'll soon be announcing the date for a "Twitchat". We want to maximise the way people can express their wishes for their end of life care, so the hashtag we'll be using for all these discussions is #maxeolc. A twitchat is a chance for anyone to join in!

I would be really pleased if readers of this blog would pitch in with your own experiences of good and bad end of life care, and with your own ideas of how we can create planning formats that really work for people.

I know your views and experiences will make a difference!

Atul Gawande on End Of Life

 

One of the best current writers about End Of Life is Atul Gawande. He is a surgeon who has spent a lot of time keeping people alive. His thoughts on the terrible price to comfort, dignity and wellbeing of the past medical imperative to keep people alive at all costs are well worth reading, especially in his great book "Being Mortal".

 

Atul Gawande poses 5 questions that are useful to anyone to people facing the end of their own lives, and the issues they will need to face, along with their families and carers.

These questions are:

1. What is your understanding of where you are and of your illness?

 2. Your fears or worries for the future

 3. Your goals and priorities

 4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?

 And later,

 5. What would a good day look like?

I am struck by how similar these questions are to questions, tools and approaches routinely used in 'person centred practices', tools I learned in my own past practice from teachers I've met and worked with,  like Gill Bailey, Helen Sanderson, Michael Smull, John O'Brien.

We found the person centred questions we asked powerful, because they applied as much to ourselves as to the people we were thinking with. They are universal questions that apply to any human being. Of course they are particularly useful when faced with the challenge of a disease or disability, and when the unconscious social response to the presence of such conditions has been to take away choice and control from the person affected.

Thinking about questions like these are a way of winning back some choice and control, of working out what is important to you now and in the future and making sure that this happens, rather than being drowned in a sea of other pressing priorities.

A death where the dying person has won back some control over where and how they die, over who is with them, and crucially how they live well in a way that makes sense to them before they die, which has mindfully included what is important to them could be described as a 'person centred death'.

I've already done a little of this thinking for myself, and shared tools like my one page profile and my history map on this blog. My most recent scan suggests I need to think more urgently about Atul Gawande's questions and my recent time staying at St Catherine's hospice gave me a chance to think about this.

So I've been talking to my wife, who is currently also my main carer (though she doesn't recognise this as a description of her role!). We will be working through some of the tools in 'Living Well' a really good tool for end of life that was designed by people from Lancashire County Council as well as Helen Sanderson Associates. Some examples of them may well get posted on this blog!

I'm really going to have to give some thought to what matters to me. Most of this I'm realising is the people around me. My friends and family, so I'm going to need to think about good ways to spend time with them, and letting them know what they mean to me.

One of the major discussions we have been having has been about who our real circle of support comprises. So many different people have stepped forward in different ways to offer us support, including really valued friends who have cooked meals and been there for both me and my wife in a way that I think is unsurpassable. Phone calls and warm messages have reached me from all over the world, and I know that prayers have been said for me in places of worship of many different religions and denominations! One person has kindly given me access to time in her beautiful retreat space. At some point it will be useful to draw together this amazing circle and think with them about the support I'll need at end of life. I hope to get some help with this from Community Circles.

We've spoken about where I would like to die. My wife and step-daughter both felt really strongly I should die at home. I've been thinking about this. When our son was born at home, I realised how small our terraced house was, particularly with extra midwives, breathing equipment and all the accoutrements of birth packed in. Supporting someone to die must have interesting similarities to helping someone be born. I can see that it will involve  a lot of work and disruption for my wife and famly. I also think however with a good circle of support around them it could work and be exactly the kind of death that would make sense for me. I know that when it comes to it, the people I love can help me have a good life right up to my death, and then a dignified death with the people that really matter to me around me, the people who have been my community and who have given my life meaning.

These are the things I'll be putting into my end of life plan. As Atul Gawande said “You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.”