It’s always too soon to talk, until it’s too late: Advance Care Planning in Powys
Sarah Wheeler, Macmillan Lead Nurse End of Life Care Planning
Powys THB Specialist Palliative Care Team
Powys Teaching Health Board
Background
This project is about facilitating Advance Care Planning (ACP) in a rural community, working in partnership to educate a network of Powys ACP Champions to promote and enable future care planning.
Advance Care Planning (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 [1].
82% of people have strong views about their future care, and wish to die in their usual place of residence, surrounded by loved ones. Despite these preferences, in Wales current hospital deaths remain at 50%. Ensuring honest conversations, informed choices, and the involvement of family and carers allows for coordinated care based on the values, beliefs and wishes of the person at the end of their life.
Rural communities such as Powys face additional challenges, as residences are often far from hospitals and loved ones, making planning ahead especially important for ensuring quality palliative and end of life care. 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.
In 2019, the Powys Specialist Palliative Care Team launched the PTHB “My Life, My Wishes” Advance Care Plan document and guidance booklet, following extensive key stakeholder and public engagement. This project trains ACP champions from health, social care and voluntary organisations in Powys to advocate and empower their community to contemplate and share their future care wishes.
Project Aims
The aim was to train Powys ACP champions, who:
- Promote the importance and benefits of ACP, and empower the community to make informed decisions, supporting honest conversation about end of life care preferences and future care plans.
- Have the knowledge, skills and confidence to guide conversations, aided by the PTHB “My Life, My Wishes” Advance Care Plan documentation.
- Receive updates to ensure their knowledge remains current.
- Engage continually with key community partners and local community groups.
- Support public awareness programs to break taboos around conversations about death and dying, including Byw Nawr/Dying Matters Awareness week, Departure Lounge events and Death Cafés.
Challenges
- Covid-19 brought ACP to the forefront of the community’s thoughts – in response we developed a shortened C-19 version of the PTHB “My Life, My Wishes” Advance Care Plan document.
- Covid-19 also delayed the project start, and meant training sessions were adapted to an online format – this also provided the opportunity to extend our reach, with 174 delegates trained in ACP awareness in Powys as part of their palliative and end of life Covid-19 education.
Key Outcomes
- PTHB “My Life, My Wishes” ACP documentation guides and prompts honest and important conversations about future care decisions.
- Powys ACP champions support “what matters” conversations when ACP opportunities arise through their roles, their established local community networks and their personal networks.
- So far 160 Powys ACP Champions have been trained in a variety of health, social care and voluntary sector settings. As part of this project, 60 ACP champions have been trained in Powys County Council and Powys Association of Voluntary Organisations (PAVO) and charitable organisations.
- Face-to-face and online events for Byw Nawr/Dying Matters awareness week and Departure Lounge, supporting Compassionate Cymru, have enhanced public awareness, and continue to increase the uptake of ACP in Powys.
ITV News Wales report on the Powys pop-up Departure Lounge event
Next Steps
We have educated Powys ACP Champions in our rural community, and the project is continuing to promote partnership, compassion, care and support from the rural community of Powys for those with greatest need. We will:
- Keep connecting and reaching established community groups in Powys.
- Keep learning and nurturing the growing ACP movement in Powys, acknowledging that our rural community is a huge asset.
- Keep breaking the taboo of talking about death, dying and future care planning within our communities.
- Keep transforming, with a plan to develop a digital platform to support ACP and sharing of information.
The public health message is ACP is for everyone and “it is never too late to discuss your future care wishes.”
Bevan Exemplar Showcase 2021
Contact
References
[1] Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel (2017); https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5728651/
