Public health at the heart of palliative and end of life care

- by Ellie Wagsta , Policy and Public A airs Manager, Scotland Marie Curie

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.

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