Dr Libby Sallnow, Palliative medicine doctor, University College London Hospital, and doctoral student, University of Edinburgh, UK.
This week sees the release of a new tool for supporting carers in palliative care, but with one crucial difference – it takes ‘carers’ to be family carers, paid carers or community volunteers.
The World Health Organization (WHO) Collaborating Centre in Community Participation in Long Term and Palliative Care, Kerala, India, has been given a mandate to develop training resources to support the 2014 World Health Assembly’s (WHA) resolution to make palliative care mainstream. Both supporting carers and training community volunteers in palliative care are important components of this and, for the first time, the workbook released this week combines both those needs.
‘Palliative Care: A workbook for carers’ (available to download free of charge), is built on the premise that we are all carers.
“There are four kinds of people in this world:
those who have been caregivers,
those who are currently caregivers,
those who will be caregivers,
and those who will need caregivers.”
It suggests that the only difference that separates volunteers, paid carers and family carers is their motivation; the business of caring and being a compassionate presence for someone as they approach the end of life are the same, regardless of who you are.
Building the skills and resilience of carers
This workbook details the different practical skills and knowledge people need to care for the dying, such as skin care, how to move patients safely and understanding symptoms whilst also focusing on self-care, grief and bereavement and compassion. What is interesting is that whilst many family carer support tools focus on what professionals can do for carers, diagnosing distress and signposting them to services or giving them respite, this workbook instead focuses on building the skills and resilience of the carers themselves. Through supporting their personal education, and empowerment through this, the care of the dying person is improved alongside experiences of the carer.
It also serves as a tool to support community volunteer training and to develop new palliative care services. It contains sections on mobilizing community support, raising local funds and setting up a local palliative care service. As such, it starts from the very beginning – how to set up a palliative care service, how to train volunteers but also as a carer, how to do the care yourself – a reality in many contexts where palliative home care is not routinely available.
Although written from the perspective of low- and middle-income settings, this workbook has relevance for all contexts. Linking those caring for people at the end of life today to the broader challenge to develop services, raise awareness, change attitudes of professionals and develop capacities of communities has relevance for everyone in the business of caring for the dying, which ultimately is everyone in a community.
Understanding people as people, rather than separating them by role, may help us to achieve the vision of the WHA’s resolution of palliative care for all.
Links and references
- WHA Resolution 67.19: Strengthening of palliative care as a component of comprehensive care throughout the life course.