Tuesday, 19 January 2016

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!


  1. This is going to be a great tool. Check out the conversation project tool. As a Hospice RN advocate, I see too many pts in a medical crisis without a plan. So many end up on ventilators, feeding tunes inserted, etc. Only to prolong life not to add quality. Very interested in reviewing your end product!

  2. hi Max, this is all so difficult to read when it's someone you know, but also oddly liberating too. It IS important for you to be able to lead on this and that yours and Lorraine's wishes are heard, especially when and if things get very difficult. My experience of this when my mum was dying was quite mixed as we had some absolutely wonderful staff at the hospice she was at in Norwich, one of whom was incredibly supportive, listening to me when I said my mum was in pain and needing a morphine & steroid top-up (when at this stage she was unable to speak herself and only the smallest changes in her facial expression and movements told me when she was in pain) whereas other staff were dismissive and said "How can you possibly know she's in pain if she hasn't said anything"; and this same brave member of staff agreed with us when we said that distressing my mum with turning her over every couple of hours to avoid bed sores in her last couple of days was pointless, causing her unnecessary distress for no real benefit to her health as potential bed sores at this stage really were not something to be worrying about. It did feel a bit of a battle at times, when you really don't need to be battling, so good on you Max, I believe what you are doing will empower you and Lorraine and the rest of the family at the most difficult of times and ensure you get what you want and need. As difficult as my mum's last days were, it was also a strange privilege to be able to be there for her and support her through the most difficult time in her life. Love to you and Lorraine, Jane xxx

  3. I think this is brilliant - but it does remind me of my 'birth plan' which went out of the window when faced with the reality of the delivery room and labour. Need to build in flexibility and realism - which I think the section on who you trust to make decisions for you starts to do.

  4. Thank you Max for allowing us to travel along with you, in a small way, on this journey. We met at the Portland Gathering a while back. I have enjoyed following your blog and now it is offering me a great deal of insight and support. I have recently lost a friend, who lived with a lot of labels- the most significant of which was not using words to communicate. As part of her support circle of family and friends, I helped her end of life wishes to be followed as she'd written them. I appreciate being able to have access to these end of life, person centred tools- thanks!

  5. Hello Max, it is Lisa from Fink Cards here. I am happy to hear that the cards written by Helen Sanderson and Sarah Russell were helpful and started a great conversation with your wife. I would love to take part in a twitterchat and will watch out for #maxeolc