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A volunteer led approach to Advance Care Planning

Marie Curie Companion volunteers are helping people in Somerset think about and discuss “what’s important to me” when it comes to the end of life as part of the recently launched Somerset Talk About Project.

Targeted to support over 4000 people in its first three years, the new service is an excellent example of partnership working by Marie Curie, Somerset NHS Foundation Trust, Yeovil District Hospital and Somerset CCG.

Julia Bearne, Community Engagement and Development Manager for Marie Curie in Wales and Southern England explains how the project came about and why volunteers are key to their success.

Julia Bearne,

As an organisation we had a very strong relationship with Somerset NHS Foundation Trust because we were delivering the Marie Curie Companion Service at Musgrove Park Hospital in Taunton, where our volunteer Companions would support people in hospital at the very end of life.

It was this work that led us to think about how people’s wishes at the end were communicated to health care professionals and their friends and families. We began to discuss how we could support people to have Advance Care Planning conversations so that we knew they were  being cared for in the way that they would choose and to know what was important to them and their families.

We knew that often people were given a planning ahead booklet when they were in hospital – and we also knew that those booklets were quite often never seen again. So how could we do it in a more human way?

Having Companions in the hospital had showed us the substantial benefits – to both staff and patients – of having someone who was ‘time-wealthy’ with the skills and training to give extra support.

We knew there was a gap in how people were offered the opportunities to think about what they wanted at the end of life, and we could see that had become an often over medicalised conversation.

While there are definitely some aspects of Advance Care Planning conversations that need to be held with a healthcare professional, what became clear was that there were large parts of the discussion that did not and in fact someone who wasn’t a healthcare professional could offer time and space for these important conversations.

Our volunteers are well trained and supported, which is crucial to any volunteer service, we give them the skills and tools they need to have end of life conversations in a compassionate way.

Upon referral, usually from the GP, the volunteer will arrange two or three meetings, in person or over the phone, where they will guide the person through a sensitively thought out programme of questions and conversations.

Together they fill out a document (the Advance Care Plan) which with their permission is uploaded to the person’s medical record. The patient gets a copy and we can provide copies for sharing if they want to discuss and we hope they do with those they are close to.

Advance Care Planning means something mostly to professionals, it doesn’t mean much to the average person. What’s important to most people is, actually what matters most to me as a person, how will my family feel about this, who do I want to speak for me when I no longer can, what am I going to do when I can’t look after myself, who will help care for me. In essence our project is about providing people the gift of time and space to have conversations which we hope will give them a better end of life experience and help their loved ones feel they understood what was wanted.

Marie Curie has a wealth of information and resources available for professionals looking to facilitate Advance Care Planning or end of life discussions in any setting. Please visit Marie Curie’s palliative care knowledge zone www.mariecurie.org.uk/professionals

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