Dying Well – a legacy to build on

*Losing a colleague, friend or family member is a pain many of us have felt at some point in life. We’ve found this hard ourselves and it may remind you of your own losses and loves. We think it’s important to have these conversations as it’s part of living a full life. You may want to choose your time to read this.* 

Long time Centre associate, friend and end of life wellbeing advocate, Clair Fisher, sadly passed away this week.

Clair leaves behind a wonderful legacy with a body of work which sheds light on wellbeing at the end of life, highlights the importance of having difficult conversations with our loved ones and on what more needs to be done to help people die well.

This blog is reposted with Clair’s permission from her Dying Well website. Clair’s other writings are available on Clare Fuller’s website Speak For Me.

My eldest daughter started saying “Goodnight, I love you, Goodbye” to me every day about two years into my illness. It’s good to get the goodbyes in ahead of time. 

But if you’re reading this now then the time for my final goodbye has come. This last blog post has sat in my drafts folder, a bullet point on my death admin file, to be posted after my death, probably by my husband or my son.

Please know that I haven’t lost a fight and that I didn’t feel let down or failed by anyone. I lived a happy life, and mostly I lived it well. I only ever had modest life goals and am pleased to have achieved pretty much all of them. By God’s grace I’ve managed to create a space filled with books and fairy lights, a garden full of flowers and a family secured by faith and love.

I’ve asked that [the] Dying Well site stays up for a while as part of my legacy. I’ve been amazed at how much this project has resonated with people – both those living with terminal illness and those supporting them. We’ve also had some success nudging a few professionals in the direction of thinking more about wellbeing in end of life care. I hope that some of the content might continue to inspire, to provoke and to challenge. And that wellbeing evidence might start to be more routinely included in consideration about how to improve the lives of people living with terminal illness and the services that are provided for them.

The Dying Well project’s wings have grown thanks to the love and care of Nancy Hey and her amazing team at the What Works Centre for Wellbeing. It has been an absolute joy to have had something so purposeful, interesting and enjoyable to work on as my retirement project. Special thanks to Joanne Smithson who has led so much of this in recent months. I’m delighted to know that the work we’ve begun together will continue and you can follow it over on the Centre’s website.

Thank you to all of you who have encouraged and supported me on this journey. The email address associated with my Dying Well website will no longer be monitored, but you can make contact with my husband on his email address: jon@pashleyfisher.co.uk 

Details of my funeral and tributes will be posted at Dandelion Farewells. 

…and here’s one final plug for the marvellous work of the team at St. Catherine’s Hospice.  Until Hospice care is consistently funded in an integrated way as part of core NHS provision, they rely on donations – you can give here.

Clair was an advocate of being open and transparent about death and dying and a couple of months ago, when asked what she wanted most from her followers on Twitter, she identified three things:

• Talk to those you love about death and dying – Clair’s blog is a good place to start for inspiration.
• Make an advance care plan – have a look at Speak for Me LPA, founded by Clare Fuller RCN, an advance care planning advocate and a member of the Dying Well network of professionals.
• Donate to your local hospice – find your local hospice here.

Dying and wellbeing: podcast series

One of the resources Clair created was a podcast mini-series which discussed palliative care, the importance of wellbeing when living with a terminal illness and evidence gaps that need to be filled. 

Joining Clair in conversation were experts in wellbeing, palliative care and healthcare policy; Kathryn Mannix, Ingrid Abreu-Scherer, Erica Borgstrom, Catherine Millington-Sanders and Sam Royston.

Find the episodes here.

Clair was also interviewed by Times Radio’s Matt Chorley earlier this month. Find his tribute episode for Clair here.

The role of work in wellbeing at the end of life 

In partnership with Marie Curie, we are conducting a new research project to build an understanding of how work can maximise the wellbeing experience of people at the end of their life. 

As well as supporting Marie Curie’s policy and research priorities, the project will:

• Look at the experience of terminal illness in working age people.
• Identify policies and practices currently designed to support employees working with a terminal illness.
• Identify organisations and communities of care currently offering palliative support to keep working.
• Identify research gaps for future projects.

The Centre will continue to build on Clair’s work through the Dying Well project. Keep up to date with our work by signing up to our mailing list.

Spearheaded by Clair Fisher, a whole team of people have been working on the Dying Well project: Nancy Hey, Ingrid Abreu Scherer, Joanne Smithson, Nicola Robbins and Lizzy Hvide at the What Works Centre for Wellbeing.

Special thanks to Tricia Curmi, Kathryn Mannix, Erica Borgstrom, Catherine Millington-Sanders, Sam Royston, Clare Fuller, Ruth Parry, Ciaran Cummins, Dr Miriam Colleran, Deborah Hardoon, Vicki Taylor-Kidson and Matt Chorley at Times Radio.

Thank you also to those who joined our three Dying Well conversations in Spring last year, and have continued to build the research and evidence base.