Catching the Conversations: a model to develop hospice volunteer workforce to capture informal conversations with patients to inform future care planning
Despite the sterling work of Dying Matters there remain a taboo about discussing death and dying among many of the public. Having conversations about the future is a voluntary process and helps a person to make known their wishes, feelings, beliefs and values and to make choices that reflect these. Without the conversations and planning, then the patient’s wishes may be unknown.
A design team from the North West Coast Learning Collaborative (comprising three North West of England Hospices – St Catherine’s, Preston; St Mary’s, Ulverston; Queenscourt, Southport, and the End of Life Partnership, Cheshire) has developed an innovative education model funded by Lancashire & South Cumbria Cancer Alliance that focuses upon volunteers supporting people, approaching the end of their lives, to start to talk about planning for the future.
The term, ‘Catching the Conversations’ is used as often it is in informal conversations that people feel most comfortable to express what matters most to them in their lives.
Recognising and responding to the significance of these conversations, enables their meaning and the opportunity to be ‘caught’. ‘Catching’ what matters to a person, now and for their future helps to inform important further conversations and documentation of their wishes and preferences in Advance Care Plans (ACP).
Future Care Planning includes clinical and non-clinical elements (Anticipatory Clinical Management Plans (ACMP) and Advance Care Plans (ACP)). It is recognised that the clinical elements of a future care plan (ACMP) need to be led by the clinical team, however non-clinical discussions can be supported by others who have the skill and confidence to do so, thus assisting the patient to begin to formulate their ideas and wishes.
The model is designed to use volunteers, who are an integral part of the hospice workforce, to facilitate these conversations by picking up cues about future wishes. Existing studies of services such as Hospice at Home, and other initiatives using volunteers, report the value of the use of volunteers by patients, families and staff.
Training and Education
The team developed specific criteria for the selection of volunteers, including previous experience of volunteering in a hospice, willingness to undertake an initial training and education course, and to take part in ongoing mentorship.
A two-day training and education course included: the well-established one-day MAYFLY ACP and Communication Skills programme and one day tailored to the specific needs of the volunteers e.g. reflections about loss, dying and death; practising specific facilitative communications skills; self-care and resilience. Other elements of the project include face to face mentorship and ongoing support to the volunteers utilising an ECHO® network (online meeting and knowledge sharing) to support the volunteers throughout the programme.
The pilot programme and evaluation
The programme commenced in late autumn 2023, and 21 volunteers were recruited (several subsequently withdrew from the programme for personal reasons).
Nine health care professionals from the four hospices were recruited to provide mentorship and support to the volunteers. This mentorship included discussion of a reflective journal which the volunteers completed after each patient contact, where a conversation had been captured around a patients future wishes.
This enabled the mentor to discuss the process of the conversation with the volunteers, enabling reflection and development. It also served as a prompt for the clinical team to build further conversations that could lead to future care planning conversations.
Preliminary Feedback
The initial feedback from the volunteers reported that the training and education programme gave them confidence to start to ‘capture’ the conversations
One volunteer said:
‘The knowledge about Advance Care Planning and the communication skills taught during the educational intervention has opened my eyes to what is possible and has enabled conversations which are truly focussed on the person to whom I am listening.’
Dr Karen Groves, the then Education Lead at Queenscourt Hospice, who as well as being part of the Design Team also delivered the two day education programme for the volunteers with Trisha Atkinson, from St Mary’s Ulverston, commented:
‘Volunteers on this programme have discovered that the knowledge and skills they have gained have been put to use, not only in their volunteering role, but also in conversations with family and friends, which is very exciting.’
The evaluation
An independent evaluation of the pilot is being undertaken by Professor Barbara Jack and Dr Kate Knighting from the Medical School at Edge Hill University and will include interviews with volunteers and mentors.
Professor Barbara Jack said:
‘Using hospice volunteers to capture informal conversations with patients has a great deal of potential. We know from previous research with patients supported by palliative care volunteer services both in the United Kingdom and Sub-Saharan Africa, that the volunteers are highly regarded by the patients who build up a good rapport with them, thus prompting trust to open up about the future’
Dr Kate Knighting said:
‘The evaluation has been designed to capture the views and experiences of the volunteers and their mentors across all elements of the project from the initial training to delivery. It will seek to draw on surveys, journals, and interviews to understand what is working well, any challenges and solutions, and key lessons to share with the community of practice’
The design team commented:
‘In designing this project, we were keen to make sure that the focus was on supporting those, approaching the end of their lives, to be able to talk about and plan for the future. We are aware that feeling able to talk is often dependent on being comfortable in the company of a trusted person; we are also aware that volunteers could be the ‘trusted’ people that patients choose to have such conversations with. So, we designed a programme of education and support specifically for volunteers, so they felt able to recognise, respond and ‘catch’ conversations that reflect a person’s wishes and plans for the future. It is great working with the volunteers and we look forward to hearing more about their experiences and feedback”
The project will develop an integrated, less medical, approach to beginning future care planning, support patient empowerment, increase capacity for conversations about the future, and build a model for advance and future care planning across the region, with potential roll out elsewhere. For further information please contact Salli Jeynes; salli.jeynes@eolp.org.uk
Dr Karen Groves, Palliative Medicine Physician & Educator, Queenscourt Hospice, Southport and Honorary Clinical Professor, Edge Hill University, Ormskirk
Patricia Atkinson, End of Life Care Education Improvement Facilitator, St Mary’s Hospice, Ulverston
Dr Andrew Fletcher, Medical Director, St Catherine’s Hospice, Preston, Consultant in Palliative Medicine, Lancashire Teaching Hospital NHS Foundation Trust, Preston and Honorary Clinical Reader, University of Central Lancashire, Preston
Salli Jeynes, Director of Service and Practice Development, The End of Life Partnership, Crewe and Education Clinical Lead, Cheshire and Merseyside Palliative and End of Life Care Strategic Clinical Network.
Caroline Kirkham, Project Manager, The End of Life Partnership, Crewe
Evaluation Team
Professor Barbara Jack, Professor of Palliative and End of Life Care, Edge Hill University Ormskirk
Dr Kate Knighting, Reader in Palliative and Supportive Care, Edge Hill University, Ormskirk
Leave a Reply