#77 What Matters Most in action and the power of Communication and kindness with Caroline England

Peter Camrass of Camrass Wills kindly supplied sponsorship to produce this episode.  Peter has had no influence in the creation, development or content of this podcast and full control remains the responsibility of Clare Fuller.This is an important episode of Conversations About Advance Care Planning. It’s a very reflective episode with learning for us all. I met with Caroline England, founder and writer of Featherbed Tales, over a year ago – we recorded an episode called Featherbed Tales and the power of voice which you can access in the show notes.

This time, as the saying goes, it’s personal. Caroline shared with me the writing she has produced to try and make sense of her experiences of death and bereavement. It took me a few goes to read and touched so many nerves – I really did smile at some reflections but also found myself in tears at others.

We talk about what  What matters most looks like in action and the power of communication and kindness. Caroline also shares what happened towards the last days of her Mum’s life when anticipatory medications had not been thought through.

I am exceptionally grateful to Caroline for sharing her story and hope that listening to it highlights the importance of care, compassion and preparation towards the end of life.

Key messages from guest

• Caroline wrote about her experiences of death and bereavement to make sense of her own emotions.

• Caroline shares the impact of a What Matters Most question, highlighting what mattered most was to be able to get in and out of a car - this transformed care.

• At other times in her Mum’s care, What Mattered Most did not seem integral resulting in over medicalisation of care.

• Sitting, taking time, meeting eye level were ways of showing care and compassion - true listening.

• Caroline shares how a nurse played a clarinet as her Mum left the hospital, and describes it as a beautiful act of kindness.

• Conversely, how being asked an inappropriate question and thoughtless words damaged Caroline’s Mum’s sense of personhood.

• We talk about Caroline’s struggles to access crisis medication and the impact this had.

• We explore how the system did not join up to manage crisis medications

• Caroline shares tips for other families in similar situations

• Caroline talks about ethical decision making and how what mattered most to her Mum was not listened to at the later stages of her life.

Resource

• Listen to my earlier interview with Caroline and access resources for Featherbed Tales in

• Featherbed Tales and the power of voice with Caroline England. 

• Access the Dying at Home, what you need to know and how to be prepared podcast series

  • Recognising when someone might be in the last stages of life  

  • What support is available to help look after a person who is dying at home

  • What equipment might be needed to help look after a person who is dying at home

  • Symptom control and medication as someone approaches the end of life at home

  • What changes are there as someone approaches the end of life?

  • What we need to do after a person has died at home

  • Changing plans, anticipatory grief and planning ahead
    

Bio: 

Caroline is an entrepreneur and writer.  She primarily writes children's stories which are published on the digital platform Featherbed Tales which she founded.  The platform enables families to create personal narrations of storybooks in their own voice.  These are combined with beautifully illustrated digital stories to bring storytime magic to children and families who can't be together.  In this way children can be immersed in a story read in the comforting voice of an absent loved one. 

Featherbed Tales was set up after the death of a close friend who left a young son.  This was one of a number of deaths which have had a big impact on Caroline's life. After the recent death of her mother following a life changing stroke and some years of illness and disability, Caroline decided to write a book to help her process her experiences of death, grief, health care and caring. She particularly wanted to explore good and bad experiences of healthcare and to try to make sense of our attitudes to death and unconscious healthcare prioritisation. She then asked me (Clare) to read her first draft and our subsequent discussions form the basis of this conversation.