My Life My Wishes - Live Well Dying Matters.

"How people die remains in the memory of those who live on…"

 Dame Cicely Saunders (1918-2005)

We're all familiar with the Powys Ways to Wellbeing with,"Start Well, Live Well and Age Well," Just as important to consider is how we end our lives, it's time to look at "Dying Well."

Live well Dying Matters

Death and dying can be taboo topics in our culture, that's why weeks like "Byw Nawr- Dying Matters," are important to raise awareness and break down those awkward barriers. How we approach the end our lives is just as important as how we choose to live our lives. It's just as relevant in death to still have your say, yet often we do not have those all important conversations.

• 76% of people living with cancer had thought about the fact they may die from cancer.
• Only 35% of people who had thoughts and feelings about their death had shared these feelings with anyone.
• Only 8% had spoken to their health care team about the subject. Macmillan (2017)

Background to Advance Care Planning

In June 2018 the PTHB identified the need to have an advance care planning document to enable conversations around death and dying. Extensive planning and research was carried out in creating a working document, enabling people to open up to conversations about end of life planning. In January 2019 the draft Advance Care Planning Document was rolled out to be extensively tested with important feedback leading to a co-produced and designed final version. 

The next step was to train special Advance Care Planning Champions as ambassadors to spread the word and make the document widely available. The first group to be trained were link nurses, soon followed by Nursing & Residential Care Homes, Voluntary Organisations, Welfare Rights and many more nurses. By "Live Now Dying Matters," week 13th- 20th May 2019, fifty ACP champions had been trained and were presented with their ACP certificates and badges at the launch day on the 13^th May 2019.

ACP Champions receiving their mugs and badges.

Making a Difference 
Dying is a sensitive topic that can be difficult to come to terms with. An ACP won’t stop the emotional pain but it can help to make it a little easier. Kim Bailey attended the launch of the ACP on the 13^th June and shared her story and experience of having an ACP and how this has been of benefit for her and her family

A Patient’s Perspective on the My Life, My Wishes Document in Powys

“I found the “My Life, My Wishes” document very helpful especially the “My Last Days” section where I can tell my family and friends how I want to be cared for and where, without upsetting anybody. Before this document I had a piece of scrap paper in my mum’s cupboard with my funeral wises written on – now they are in my document where all my family can access them. This document is so helpful to bring up a subject that no-one really wants to talk about, once given a cancer diagnosis. I wish this had been around 7 years ago when my dad had his diagnosis, as this is something as a family, we had never spoken about. So, towards the end of his life, we had to bring up the subject but if we had had “My Life, My Wishes”, we could have spoken earlier about this. We would have known his wishes and would have known how he wanted to be cared for.”

Kim Bailey – May 2019

An ACP Champion’s Perspective on the My Life, My Wishes Document in Powys

Kathryn Jarvis from Credu shares her reasons for becoming an Advance Care Champion.

"I put my name down to do the training because I believe people should have the death they want.We don’t want to think about dying but it’s going to happen to every single one of us at some point in our lives.

As an Adult Carers Outreach Worker I work with unpaid family and friend carers of people with a wide range of health issues, mental ill health and learning disabilities.

As an ex-carer, caring for my grandad I remember how unsettling it was not really knowing what he wanted and navigating things as best we could.

Future care and our wishes is so important. Do we really spend time to consider where we’d want to be cared for and by who, what treatment we’d want or what we really don’t want. Have we made a will and do have our wishes on funeral arrangements in place? It maybe that you have feelings about the type of service you want- what music, poems, readings or hymns would you want, whether you want to be buried or cremated.

The ‘My life, my wishes- advanced care planning document.’ Has everything in one place. It’s an easy to read document you can pick up and put down when you want. You can add to it. You can discuss it with those around you and make your wishes known."

Are we ready?

What Next?

In difficult times having an Advance Care Plan can help make all the difference. It’s not just for people who are terminally ill. It’s a document that enables us to change our attitude to death and dying, facilitating an opening to enable those important conversations at the end of life. The more death becomes a part of everyday life, for people of all ages, the easier it will be to talk about. If we begin these conversations with young people, then maybe some of the stigma and discomfort will start to ease. If you, or your organisation would like to be an Advance Care Champion there's another training session at PAVO offices, Ddole Road, Llandrindod, LD1 6DF on Wednesday 17th July from 10.00-3.30, to book contact the Palliative Care team using the contact details below. If you would like a copy of the Advance Care Plan for yourself or someone you know, visit the PTHB Palliative Care – My Life My Wishes website, call the palliative care team on 01686 623558 or e-mail charity.garnett@nhw.wales.uk

Mandy Dean- Credu, Charity Garnett-Palliative Care Team & Kathryn Jarvis-Credu, Advance Care Champions.