Place-based end of life care in Wales

Rachel Jones, Associate Director Strategic Partnerships & Services Wales, Marie Curie, talks about place-based end of life care

What would matter the most to you at end of life?

Would it be where you died, who was with you or how you felt at the end? At Marie Curie, we believe everyone – no matter your postcode, gender or your religion – should have access to good end of life care, and by 'good' we also mean care that takes your wishes into consideration – whether that's being at home, being with loved ones or not being in pain.

Across our Welsh communities, Marie Curie has continued to strive to that ambition throughout the last 18 months of the pandemic. Both within our Cardiff and the Vale Hospice in Penarth and our at home nursing service across most of Wales, our caring services teams have pulled together more than ever, to ensure we have been able to continue to operate and provide vital end of life care to patients and their loved ones. Being flexible has been a key strength of our workforce – whether its working alongside District Nurses to deliver seamless end of life care or assisting care homes when staff are under extreme pressure.

Covid-19 has certainly highlighted that for our work to have the most impact for our patients, we need our health and social care services to recognise the importance of community and place. We have seen the value of social connections, neighbourliness, sense of belonging and mutual trust brought to the forefront at times when people needed support most. However, for people with terminal illness, lockdowns and social distancing have caused isolation and loneliness at a time when relationships and human contact are of utmost importance.

As we recover from the pandemic it will be crucial to maintain the centrality of communities and continue to strengthen community resilience through our ongoing efforts to improve everyone's health and wellbeing. This is why Marie Curie strongly supports making 'Compassionate Cymru' a reality – where we all work together to put the 'what matters to me' question at the heart of what we do and improve how people in Wales care, die and grieve.

In addition to the issues Covid-19 has brought, it is widely recognised that population ageing also presents a huge challenge for future end of life care. With deaths projected to increase across the UK, coupled with trends in complex care needs of people with multiple health conditions towards the end of life, it means the number of people dying with a need for palliative care is projected to increase by up to 42%.

Both health and social care services are inevitably going to have to change, to cope with complexity and numbers if there is going to be any chance of meaningful choice at the end of life. The service environment will need to be different in many ways; it will need to become seamless across health and social care, and more responsive to individual patient need.

Some of the biggest service challenges we face will be focussed around informing and supporting people's choices on their place of care at the end of their lives and place of death. Marie Curie is working on this with its policy project 'A Place for Everyone', to prioritise the complex clinical needs and social circumstances of people approaching end of life, in a bid to give people more choice and a better experience at end of life.
Focussing on place in the context of future quantity and complexity of need has enormous implications for how end of life care services, coupled with social care, are designed, funded, and delivered. This includes the roles of hospital services, care homes, primary and community care providers. It will also have an impact on volunteers and family members as carers.
This brings into play many other things outside the scope of health and social care such as private and social housing, employment policies and financial security.
This is an imminent issue and we must all take steps to address the challenges that we face if people are to have choice and quality of experience at the end of their lives now and in the future.
Rachel Jones
Associate Director Strategic Partnerships & Services Wales, Marie Curie