Penny Jones is the Director of Care Services at St Catherine’s Hospice, Crawley, UK. At the time of taking part in this study she was the Director of Care Services at Greenwich & Bexley Community Hospice. Here, she explains the background to a longer article published in the May/June edition of the European Journal of Palliative Care.
Advance care planning is one method of improving the care of people who are facing life-limiting illnesses to help them live and die in the place and manner of their choosing by expressing their wishes, needs and preferences.
The Advance Care Planning Project at Greenwich & Bexley Community Hospice in southeast London was conceived to recruit and train volunteers as advance care planning facilitators, to work alongside our hospice teams. The aim of the project was to reach and enable people with a life-limiting illness living in Greenwich to either produce an advance care plan document or enable them to have time to consider what their wishes and concerns were, empowering them to have discussions with their family and friends.
In order to drive the project forward we sought grant funding and were successful in our bid to Comic Relief, a UK-based charitable organisation that raises money for projects in the UK and abroad.
In a change from our normal approach to recruiting volunteers, we decided to actively place adverts in the local press to seek volunteers specifically for the project from our local community, who were interested particularly in working with people who were living with a life-limiting illnesses.
As highlighted in the published article, we were very keen to help people write down their wishes or at least have a conversation about their wishes. Having reviewed the literature, there is significant evidence to show that if people have an advance care plan there is a decrease in hospitalisation and an increase of hospice and palliative care support at the end of life.
An important decision we had to take as part of this project was how we should evaluate and demonstrate its effectiveness. As volunteers play a very large part in supporting service delivery in hospices, we felt it important to evaluate the impact of their role as volunteers and the training we provided. We later discovered, as part of the literature search for the published article, that to date there is no other empirical literature about trained volunteers taking on this role of advance care plan facilitators.
Once trained, the volunteers were to receive referrals from teams based at the hospice, as well as from external sources, such as general practitioners. As with most projects, we got off to a slow start with few referrals initially. In order to keep our volunteers’ skills and confidence buoyant, we decided to ask them to work with people attending our Day Hospice. This had a twofold result in not only providing the volunteers an opportunity to develop their skills in listening and communicating, but also resulted in most of the people attending Day Hospice working on their own advance care plans and having open discussions about their wishes with the Day Hospice Team and also with family and friends. It also saw people in Day Hospice, who had been reluctant to work with the volunteers, being encouraged by other Day Hospice attendees to “give it a go”!
The feedback we have had from people working with the volunteer advance care planning facilitators has been overwhelmingly positive. We have received comments such as: “working with them gave me confidence to open up discussions with my family and friends” and “now I have told my family what my wishes are, I can get on with other things!”
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Advance care planning in a UK hospice: the experiences of trained volunteers’ by Penny Jones, Kate Heaps, Carla Rattigan and Di Marks-Maran, published in the May/June 2015 issue of the European Journal of Palliative Care (vol. 22.3). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.
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Links and resources
- For more information on the project, please email Penny Jones.
- European Association for Palliative Care Group on Advance Care Planning.
- Advance Care Planning – Key to Patient-Centered Care: 5th International Conference on Advance Care Planning and End-of-Life Care, 9-12 September 2015. See more on conference website.
- Read other posts on advance care planning and volunteering in palliative care on the EAPC Blog.
- European Association for Palliative Care Task Force on Volunteering in Hospice and Palliative Care.