Public health at the heart of palliative and end of life care
The pandemic has shown just how important access to palliative and end of life care is when it’s needed most, and the devastating impact dying, death and bereavement can have on anyone at any time. Restrictions on socialising and household mixing in the early stages of the pandemic significantly impacted how terminally ill people, their families and carers could access palliative care, and wider health and social care because of service pressures, as well as changing how people were able to grieve for family members, friends and colleagues who had died, resulting in increased loneliness and complicated and/ or delayed grief.
Communities have gone above and beyond during the pandemic, with initiatives mobilising overnight in 2020 to support the most vulnerable, which has continued throughout the last two years. But not only that, it has reinvigorated community appetite to part of such initiatives longer term to make a difference to the lives of the most vulnerable.
So how can those resources, compassion and dedication of local people by best harnessed to support those a ected by dying, death and bereavement in their communities?
Public health in the context of palliative and end of life care involves working with communities to improve people’s experiences of dying, death and bereavement (Archibald, D et al BMJ Open 2016).
Across Scotland, some local areas are already involved in Compassionate Community initiatives, which empower local people to help transform attitudes and practice around dying, death and bereavement. They work alongside existing formal services in the community, local people support those with deteriorating health, their families and carers to help them to live as well as possible (Compassionate Inverclyde; Evaluation Summary 2016; Ardgowan Hospice).
Compassionate Communities use a local network of volunteers, fundraisers, befrienders, companions, community cafes, and compassionate local businesses and schools to help those a ected by dying, death and bereavement to live well and access the physical, emotional and spiritual support they need (Compassionate Inverclyde; Evaluation Summary 2016; Ardgowan Hospice).
The upcoming Local Government Elections in May 2022 provides an opportunity for Local Authorities to lead and embed Compassionate Community initiatives across all local areas to support everyone a ected by dying, death and bereavement to have an end of life experience which reflects what is most important to them.
This opportunity must be seized by all candidates for the Local Government Election, and elected representatives, as many still miss out on the support they need at the end of life. Covid-19 has had a significant impact on poverty, deprivation and exclusion, deepening existing health inequalities and inequities. Data has shown that deaths from Covid-19 have been significantly higher in areas of socio-economic deprivation in Scotland; over double in the most deprived areas compared to the least deprived.
We know from existing evidence that terminally ill people a ected by this cycle of poverty, deprivation and exclusion, as well as wider health inequalities, have historically faced multiple barriers in accessing and engaging with palliative care support in their communities. These barriers range from a lack of care options and health literacy, to barriers because of race, gender, faith, age, sexuality and location, amongst others.
A whole-system, public health approach must be at the heart of the approach to palliative and end of life care delivery on national and local levels, bringing together all palliative and end of life care service providers, including the third sector, and leveraging community resources to deliver support which reflects people’s palliative care needs. Otherwise, many terminally ill people, their families and carers will continue to miss out on the support they need.