With services stretched but more people than ever needing palliative care, how do we ensure a better end of life care for all?
It’s a challenging time for people, professionals and leaders in Wales. The impact of the covid-19 pandemic is still being felt, and we are facing a difficult economic environment.
Health and social care demand and capacity have in some ways never been so unbalanced. A lot of people have been exhausted by the last 2 years. Many services continue to rely heavily on staff good will and additional efforts.
So what is the best way to move forward from these difficult times, and ensure dying people and their loved ones aren’t faced with traumatic experiences, which can lead to more complex grief?
That’s where place-based care and better local partnership working can help.
Place-based working means health, care and wellbeing services planned, managed and delivered together to meet the needs of a local community, town or primary care cluster area.
It provides a better shared understanding by these services of community needs, aspirations and social capital leading to joint actions and shared resources.
This more joined-up health and care support in people’s homes results in less need for them to go into hospital, nursing or residential homes or hospices.
Working with the Institute of Public Care at Oxford Brookes University, Marie Curie Cymru has held interviews and focus groups with more than 70 people across Wales, including people with lived experience of palliative and end of life care and professionals working in the field.
As demand has increased and services have been stretched, some families have felt unsupported. For some, the quality of support from community-based generalists has not matched that from palliative and end of life specialists.
One person described their “sense of relief” at having hospice care for their relative, saying: “I knew she’d be well looked after. You get a sense of community, that everybody involved is pulling together, and trying to do their best.”
But as we know, some areas across Wales offering that local place-based care will have specialist support wrapped around them, while many places won’t – leaving a disjointed system for people to navigate at an already vulnerable time.
If little or no investment is sustainably provided to local place-based services, then demand will inevitably fall upon the specialist and intensive services, which don’t always have the capacity to support everyone to be the service that people need.
Better place-based community provision is key to supporting people in their own home and reducing the need for inappropriate hospital care. Recent Marie Curie research, published in the Better End of Life report, found there are 30,000 ‘out-of-hours’ emergency visits to A&E each year in Wales by people in their last year of life.
How do we tackle this? Primary care clusters may be the starting point for place-based provision, and palliative and end of life care needs to be part of that whole network supporting people with the full range of different needs and this will require wider engagement with other community services.
The emphasis that place-based care puts on seamless support in the community presents a challenge to palliative and end of life care. It emphasises a direction of travel which many people in the sector are enthusiastic about – to equip local communities with the resources to support all people needing care at home and in their local ‘place’.
To achieve this requires continued development of palliative and end of life care practice as part of the wider local offer, support to professionals across all disciplines to develop their skills in this area, fair distribution of resources in response to need across the country, and continued work by partners to engage with local providers.
We also must think of the impact of death and dying not just on the patient, but also on the loved ones surrounding them.
We know good end of life care, which recognises the needs and wishes of the dying patient, can lessen the risk of complex or prolonged grief. Being able to spend time with their loved one in their final moments can support people through their bereavement.
That’s why services to support people both pre-bereavement and after a loved one’s death is also vital, and also needs to be place-based (or person-based) to support people where, when and how best works for them.
Marie Curie has launched our Bereavement Information and Support Service project this year with Diverse Cymru – working in partnership, as we advocate here,– in a bid to provide that care and support to harder to reach communities across Wales, particularly in West and North Wales.
This support will also hopefully lead to future awareness of people on the support they can ask for at end of life, and in turn lead to society becoming less afraid of death, dying and bereavement.
As noted above, there is also the potential to widen out the boundaries of services to meet needs in local communities which extend beyond palliative and end of life care. There may be circumstances where the good practice and knowledge built up in this area could be usefully applied to other areas of professional practice – such as, for example, support for people with long-term, chronic conditions or disabilities.
If partners start from the needs of the individual or the local community it may be that the service solutions will need not to be limited by a palliative or end of life care label. Providers will need to work closely with public service commissioners to explore these opportunities.
Palliative and end of life care has developed hugely in the last decades. Despite the challenging times we have all experienced in recent years they remain greatly valued and many people consider there is something very special about the quality of care and ethos of these services. They have a great deal to offer to people at end of life and their families. They have also got a great deal to offer colleagues and partners working in local place-based community services more widely.
Perhaps now is the time, as well as continuing to improve these services, we can explore how the palliative and end of life approach and ethos of care can be applied more widely across the health and care system for the future.
You can read the full report at www.mariecurie.org.uk/policy
Rachel Jones, Associate Director Caring Services Wales – Marie Curie
Emeritus Professor Keith Moultrie, Institute of Public Care, Oxford Brookes University
Marie Curie – A better end of life for all / Gofal diwedd oes well i baw
See also the Dying in Poverty petition: www.mariecurie.org.uk/poverty
Information and Support page www.mariecurie.org.uk/support