Definitions, language and terminology
Before going any further, it is important to be clear about what we mean by volunteering.
This is defined by the NCVO as:
"Any activity that involves spending time, unpaid, doing something that aims to benefit the environment or someone (individuals or groups) other than, or in addition to, close relatives. Central to this definition is the fact that volunteering must be a choice freely made by each individual.
"This can include formal activity undertaken through public, private and voluntary organisations as well as informal community participation and social action. Everyone has the right to volunteer and volunteering can have significant benefits for individuals."
This definition is important as all too often volunteering in hospice and palliative care is understood solely as formal hierarchical service delivery models of volunteering. As outlined in the background to the resource, community volunteers are more empowered, working alone without direct supervision as evidenced by the findings from the analysis.
Within hospice community volunteering programmes there is a spectrum of volunteering ranging from informal community and volunteer led programmes to more hierarchical service delivery models.
For the purposes of the resource community volunteering is defined as "volunteering undertaken out with the hospice building, directly supporting people with palliative and end of life care needs in their homes."
Language and terminology
Throughout the project we have been very aware of language and the influence that words can have on the relationship between people.
In many of the community volunteering programmes the emphasis is on 'doing with' rather than 'doing to', and the principle underpinning this resource is that volunteers, people with end of life care needs, families and carers are partners in the relationship, each meeting and responding to one another as individuals.
For this reason the resource intentionally does not use the term 'patient' but talks about 'a person/people with palliative and end of life care (PEOLC) needs.'
The word 'patient' only appears when used in quotes or case studies.