Abstract

A systematic literature review of research on end-of-life (EOL) care volunteers was conducted within the context of a larger study seeking to identify a best practice EOL care delivery model for Canada. The literature review revealed that significant positive benefits can be derived from volunteers' contributions. Volunteer efforts were found to benefit dying persons, their families, EOL care institutions, paid EOL staff (including nurses), and the volunteers themselves. Their positive contributions can be regarded as increasing the accessibility and financial stability of EOL care.

Background: A study designed to identify a best practice end-of-life (EOL) care delivery model for Canada by visiting the sites of hospice and palliative care programs in 8 countries revealed the frequent involvement of volunteers in programs. A systematic literature review was conducted to examine existing evidence on EOL care volunteers, and found that volunteer efforts generated positive impacts on EOL care recipients, their families, the program itself (through fundraising and administrative assistance), and EOL care staff. Volunteers enhanced the range of EOL care services provided to terminally ill individuals and their families, and can therefore be regarded as increasing the accessibility of EOL care.

Methods: A systematic literature review on EOL care volunteers was conducted. The search was performed using key databases and a variety of search terms that would isolate articles pertaining to both volunteers and palliative care. Of the 18 studies retained for final review, the majority were American (11), 1 was Canadian, and 6 were from Australia, the UK or Europe. Three key themes were identified: (1) the roles performed by EOL care volunteers; (2) training and organizational issues; and (3) outcomes, including the effect that volunteers had on EOL care and the experience of volunteering itself.

Findings: A diverse range of volunteer roles was identified. The majority of duties included home visits, transportation, shopping and running errands, meal preparation, clerical duties and fundraising. Four studies noted that volunteers took part directly in such nursing and personal care activities as turning patients in bed, bathing them and assisting them to eat meals. Volunteers were perceived to have more time and opportunity than paid health care providers to spend with dying persons and their families, and their provision of emotional and social bereavement support was thus found to be a key contribution. One American study noted liability concerns with such involvement and program staff opted to avoid direct volunteer-client contact altogether. Screening of potential volunteer candidates for suitability to EOL work (personality type and background legal check) was identified as highly important to ensuring effective care, reliability, and retention of volunteers. Orientation training was widely viewed as critical to ensuring volunteers would be effective and safe in their work. Organizations differed in whether they relied on volunteer coordinators or paid staff to manage volunteers, and long-term retention was related to the success of ongoing training and coordination.

Findings suggest that volunteer efforts positively impacted EOL care by improving the quality of life of the dying persons and their families. Volunteers also gained personally from their experiences through the development of new skills and/or feelings of satisfaction associated with making societal contributions. Financial benefits arose from incorporating volunteers insofar as they reduced expenditures on staff wages and benefits, and contributed to fundraising efforts. The article did not comment on whether financial gains were realized by reducing the role for paid staff and simultaneously increasing the role for volunteers.

Conclusions: The benefits offered by EOL care volunteers are numerous because volunteers perform a diverse array of functions ranging from social support, administrative assistance, fundraising, and in a limited number of cases, direct care. Volunteers may also offer financial stability to EOL care organizations by performing roles that would otherwise be filled by paid staff. However, the article did not comment on whether volunteers displaced paid workers. The authors note that volunteer support work is made especially valuable because paid care providers rarely have time to focus on bereavement with patients and their families. This study suggests that Canadian organizations responsible for palliative and EOL care could realize substantial benefits from incorporating volunteers into their programs.

Reference: Wilson DM, Justice C, Thomas R, Sheps S, MacAdam M, Brown M. "End-of-life care volunteers: a systematic review of the literature". Health Services Management Research, 2005; 18, 244-257.