Background/context Death and dying is not just a medical issue, it is a social issue which is experienced within communities. Current end of life care is largely professionally and service orientated. There is limited engagement with communities. There is a need for palliative care to reorientate its focus from building professional capacity to building community capacity and to foster coping rather than dependence.
Trained volunteers can make a difference by working within a community to provide support to individuals and to support healthier attitudes to end of life and bereavement.
Approach used Volunteers were recruited from local communities. Training in listening, empathising, boundaries and coping with distress empowered volunteers to support people in the last year of life. The volunteers provided social and practical support to a person or family in their own community in the last year of life, irrespective of diagnosis.
Outcomes Volunteers enabled patients and carers to re-engage in community activities. They developed experience and confidence in providing support to end of life and into bereavement, and facilitated conversations about planning for the future. Volunteers expressed satisfaction at being able to make a difference.
Patient and carer questionnaire responses showed reduced sense of isolation, increased confidence, and increased sense of well-being, even in the face of advanced illness. Informal carers expressed an improved ability to sustain the caring role and an increased sense of well-being.
Application to hospice practice Death and dying has become increasingly professionalised and alienated from communities. Health services focus on healing, and there is a reluctance to discuss dying. Hospices have a unique opportunity to work in partnership with health, social and third sector to enable communities, through volunteer support, to adopt a compassionate and inclusive approach to death, dying and loss.
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