“While dying is intensely personal, it also sits within a societal context. This means that palliative care services also need to be shaped by, and respond to, community values and priorities.”
Palliative Care Australia [1]
A life-limiting illness can impact the wellbeing and function of the person with the illness and their entire social network. Nationally and internationally, communities are rethinking palliative care and issues about dying, death and bereavement. Caring networks are identified and developed around the person and their carers, extending the concept of person-centred care to network-focused care. This supporting network, known as Compassionate Communities, can be comprised of friends, neighbours, work colleagues and volunteers.[2, 3] The network can provide both hands-on care and support to those providing hands-on care by mobilising to support community members in a variety of ways – practically, emotionally, financially and spiritually.[3] These networks of care demonstrate how dying is “everyone’s business”.[4]
‘Public Health Palliative Care’ is a community approach that requires a genuine ‘partnership’ between services, communities and carers. The goals of public health palliative care are to:[5]
- Build public policies that support dying, death, loss and grief
- Create supportive environments (in particular social support)
- Strengthen community action
- Develop personal skills in these areas
- Reorient the health system.
Figure 9: A network of care [5]
Adapted from Abel, J., Walter, T., Carey, L., Rosenberg, J., Noonan, K., Horsfall, D., Leonard, R., Morris, D. & Rumbold, B. (2013). Circles of care: should community development redefine the practice of palliative care? BMJ Supportive and Palliative Care, 3, 383-388. doi:10.1136/bmjspcare-2012-000359
Case Study
In the video ‘Bill’s Story’, you will see how public health palliative care can empower communities to lead responses to dying and bereaved people, working in partnership with palliative care and other health care services. [6]
Thinking Points
- Have you ever been part of a palliative or dying person’s network of care in a non-professional capacity? Why did you get involved?
- Identify activities in your community that raise public awareness related to death and palliative care and foster supportive networks.
- Review the resources and information available with regard to compassionate communities on The Groundswell Project website and consider how this approach will influence your practice as a health professional.
References
- Palliative Care Australia, Background Report to the Palliative Care Service Development Guidelines, prepared by Aspex consulting Melbourne, Editor. 2018.
- Kellehear, A., Compassionate communities: end-of-life care as everyone’s responsibility. Qjm, 2013. 106(12): p. 1071-5.
- Abel, J., Compassionate communities and end-of-life care. Clin Med (Lond), 2018. 18(1): p. 6-8.
- Palliative Care Australia and The Groundswell Project Australia. Compassionate Communities Communique. 2017; Available from: https://static1.squarespace.com/static/57e52fb237c5811bc06c8595/t/58dd977417bffcc368576f26/1490917266797/PCA016_CC+Communique+Booklet_F+Online.pdf.
- Abel, J., et al., Circles of care: should community development redefine the practice of palliative care? . BMJ Supportive and Palliative Care, 2013. 3: p. 383-388.
- Milford Care Centre and Compassionate Communities. Talking together: facing death and dying. Bill’s Story. Let’s Talk Series 2014; Available from: https://youtu.be/_5tJGaWjRZk.