Background
Historically volunteers have been involved in palliative care as companions whose presence eases distress, loneliness and existential suffering.
This summary provides an overview of the evidence for the role of volunteers in palliative care and their support and training needs.
Evidence Summary
Volunteers make a valuable contribution to palliative care outcomes by relieving distress and strengthening bonds between dying people and their community, friends, activities and hobbies. [1,2] Although typical roles include psychosocial and emotional support, companionship, personalised attention, comfort, advocacy and support for families and friends [1,4] there may be significant diversity in the nature of roles performed by volunteers depending on the context, location and cultural settings of the palliative care service [4,6,7] particularly in rural areas. [3] Carers and family identify volunteers as having an identity separate from paid staff. Some reviews indicated the potential for volunteers to contribute to meeting the increasing end of life and palliative care needs of the community. [4-8]
Studies note differences in the theoretical concepts of care between health care professionals and volunteers, [1,2,4,5] in that volunteers may value personal, local and specific knowledge over generalisable knowledge and may value a psychosocial model of care over a medical model of care. [1,8] These differences are sometimes revealed in conflict and tension between volunteers and health care professionals [1,4-8] and may result in volunteers being too rigorously ‘policed’ by clinicians [5] or them having a sense of being less valued in the clinical hierarchy [1,4,6,8] and consequently receiving late or insufficient referrals [1] as well as experiencing exacerbated ‘job stress’. [5]
Training material reflects the volunteer’s role in psychosocial support, grief and loss, communication and listening skills, death anxiety, cultural competency, complementary therapies and managing negative feelings and conflicts of interest. [1,4,8] Structured approaches to training, meetings, mentoring and supervision help address boundary issues, [1,4,6-8] empower volunteers and to understand their limits of service delivery, help them understand the palliative care system and help to buffer against burnout. [1,4,6-8] Training also helps volunteers in small communities to better cope with limited resources, where there is less likelihood of having an integrated-team approach to palliative care. [1,3] Although structured training and capacity building of volunteers contributes greatly to the confidence of health professionals in volunteers [1,4,6,7] research in this area is lacking. [1,4,6-8]
Emerging research suggests that volunteers assisting in the care of people with dementia, provides companionship, can distract and calm people with dementia, help ensure their safety, promote interactions or engagement in activities, and improve their nutrition. [6,7]
Quality Statement
Overall the quality of the evidence was moderate to low, with the only high-quality Cochrane review failing to retrieve any studies on which to synthesise findings. [9] Most of the reviews failed to report adequately on quality or bias of the studies included and a lack of robust research in this area was cited several times as limitations.
Page updated 08 July 2021