Sunday, 3 January 2016

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.”



  1. Max, it is a great gift that you can think and write so clearly about your experience in a time of life that the culture so easily submerges in denial and focus on the technical. Thank you for what you are teaching me by your example and your thinking.

  2. Such inspiring stuff Max, you have made me think more deeply about the fact that life is on a lease and so we must make it more meaningful, and not prolong it at any cost. I think you have become the greatest teacher I have ever known. Thank You Gill