Dying Matters - Being in a Good Place to Die

Dying Matters week this year is the week beginning the 10th May. The focus of the week this year is ‘being in a good place to die,’ Many of us focus on the quality of our lives but how we die and end our lives is equally important. Sarah Wheeler tells us more about the steps we’re taking in Powys to ensure that people living in our communities are in a good place to die.    

Sarah Wheeler - Macmillan Lead Nurse End of Life Care Planning

What brought you to work in the field of palliative care?

I have been a nurse for 34 years and enjoyed my career latterly in Birmingham working as a Colorectal Specialist Nurse in a hospital and community setting. Within this role I was often privileged to support patients and families at the end of their lives, developing a passion for end of life care. In 2005, my family and I decided to move to beautiful Powys and I joined PTHB team as a Macmillan Palliative Care Clinical Nurse Specialist and have enjoyed being part of a supportive rural community in Powys.

Tell us more about your role as Macmillan Lead Nurse for End of Life Care Planning with the PTHB?

My role is to work within national and local end of life guidance, to ensure best care and support in end of life care for all adults along with partners within Health, Social Care and Voluntary sector organisations. I also enable and empower health and social care staff to deliver best practice in end of life care, educating and training staff improve co-ordination of end of life care.

An important part of my role is to ensure that every adult in Powys has the opportunity to talk and share their future care wishes voluntarily with family, friends, and health & social care professionals.  We know it is important to help you and those people close to you to understand what you feel is important for your future care. This is known as Advance Care Planning (ACP) and ensures that your voice and opinions continue to be heard, even if you are unable to speak for yourself. ACP can help you live your life to the full with peace of mind that your future care wishes have been talked about and shared.

ACP Lauch 2019

Tell us more about Advance Care Planning and how it started ?

In 2019, as part of the Powys Specialist Palliative Care Team we launched the PTHB "My Life, My Wishes" Advance Care Plan documentation following extensive key stakeholder and public engagement.

“ACP is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future care”.

In Powys, this ensures honest conversations, informed choices, with the aim of involving family and carers to allow for seamless care provision at end of life or if you were unable to speak for yourself: What is ACP?

Are there particular issues which arise with end of life care in rural areas like Powys?

ACP in rural communities such as Powys face additional challenges, as our local residences are often far from hospitals and loved ones, making planning ahead especially important to ensure quality palliative and end of life care or clear decision making within a crisis conversation. Although these are often seen as difficult conversations, evidence suggests that ACP is more accessible and less threatening in rural areas when these conversations are held with local people who are a trusted and part of the community in Powys. Evidence also suggests that when loves ones are able to make wishes and preferences happen it can be very comforting and helps in loss and grief.

Bevan Commission exemplar

Do you work closely with any  other organisations or statutory services to provide support to people?

With these challenges in mind, I have now become a Bevan Commission Exemplar following completion of a project educating key partners in PTHB, Powys County Council and Powys Association of Voluntary Organisations (PAVO); whose members are now Powys ACP Champions, and have the knowledge, skills and confidence to support and advise on informal and formal ACP within their community of Powys. ACP opportunities arise through their roles, their established local community networks and their personal networks.

Through collaboration with health, social care and local voluntary organisations ACP champions empower and enable ACP in their communities in rural Powys, encouraging open conversation and using the PTHB My Life, My Wishes ACP document and Information guidance. www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

What are the benefits of My Life My Wishes?

To date we have educated 220 ACP Champions in a variety of health and social care and voluntary settings, and My Life, My Wishes ACP document continues to support open conversations, to write and share wishes in advance. We continue to support Powys health and social care professionals to respect future preferences, values and wishes that matter to the person in the community we care for.

What are your hopes for the future of palliative care in Powys?

Through my role, my hope is to continue to nurture and grow an ACP movement in Powys with a rolling programme of public awareness of ACP, utilising the support of the local Powys ACP champions and acknowledging them as a huge community asset. Awareness campaigns such as CompassionateCymru/Dying Matters Awareness week, Death Cafés and Departure Lounge will support breaking the taboo of talking about death and dying within local communities in Powys. When the Covid-19 crisis hit us in 2020 it changed the whole landscape of the death and dying conversation and brought serious illness conversations and ACP to the forefront of our community’s thoughts. 

What does being in a good place to die look like in Powys?

Dying Matters Awareness week 10^th – 16^th May 2021 focuses on the importance of being in a good place to die – we want people of all ages to be in good place physically, emotionally and with the right support in place – getting there means having important conversations, taking careful decisions, thinking, talking and planning for it.

Let’s grasp the opportunity to promote and support future care planning with community networks that make a difference at the heart of the community in Powys!

In a good place to die.

If you could change one thing about the way we approach death and dying what would it be?

If I could change one thing about the way we approach death and dying is that it would be normal for us all to have a future care and death plan in place, just as it is now the normal to have a birth plan in place.

ACP remains more effective when introduced to our whole community in Powys, even before a person becomes unwell, or unable to speak for themselves or if experiences an acute crisis. “I didn’t want that..”

I hope through open conversations about death & dying we can to unleash the concept of compassion, care and support within the local rural community for those with the greatest needs.

If you had one top tip, or piece of advice about being in a good place to die what would it be?

My tip is Advance/future Care Planning is for everyone and “it is never too late to talk about your future care wishes.”

www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

“it is never too late to talk about your future care wishes.”

Our thanks to Sarah for taking the time to let us know about the steps in place to support death and dying in Powys. If you'd like to find out more please contact Sarah Wheeler at the health board Sarah.J.Wheeler@wales.nhs.uk

To read more about bereavement support in Powys please see our PAVO Mental Health Blog Bereavement Support in Powys