Matthew Brindley argues we must end the postcode lottery of palliative care, and improve services to people requiring it at home.
Despite deaths at home skyrocketing over the pandemic, vital out-of-hours support for people dying at home in Wales is still something of a postcode lottery. A new report by Hospice UK looks at how we can better support people nearing the end of their lives through more seamless and sustainable services.
While hearing about the experiences of families who care, or who have cared, for loved ones with palliative care needs at home, as well as the professionals who provide that essential support, the importance of having access to home-based overnight care was evident. The clear stresses and strains when care wasn’t available were stark, and the issue needs urgent attention.
‘Families are saying “we can manage the daytime, it’s the night time.” Services are reduced at that point and you feel a lot more on your own.’ Hospice Family Support Team
Not meeting the out-of-hours palliative care needs of people at home can be immensely challenging for both individuals and families, especially for those who don’t have family at home to care for them. In some cases, people feel they have limited or no options to get adequate pain relief for changing symptoms beyond 5pm or on weekends, leaving them no choice but to call an ambulance for support. For others, chronic lack of sleep, discomfort and uncertainty can compound an already challenging situation.
In 2015 Wales was the first country in the UK to provide round the clock advice to clinicians caring for adults and children at the end of their lives. This was a major step forward. Yet provision of out-of-hours home-based care remains inconsistent across the country, partly due to the different opening hours of support services and variations in the specialist teams and skills available.
‘Waiting on hold for 20 minutes to speak to a healthcare professional can feel like a very long time when you’re witnessing someone you love in pain.’ Family Carer
Professionals and people who have cared for a loved one with palliative care needs described other challenges, including the need for a personable, single point of contact for adults needing end of life care to help them, and their families, navigate an often complex system – similar to what exists in the children’s sector.
They also highlighted the need for more joined up national and local approaches to develop and deliver hospice and palliative care services, alongside better skills-sharing and promoting good practice across the sector.
Underpinning these everyday challenges is one of unequal access to palliative care, alongside ever-increasing demand for services. While end of life care services in Wales are recognised as being amongst the best in the world, they are also sadly not reaching everybody in need and are not built to withstand the challenges of the future.
Pre-pandemic, an estimated one in four people with palliative care needs were already missing out on the expert care they needed , which is equivalent to around 6,600 people in Wales each year, with those most likely to experience unequal access were those from racialised communities, the LGBTQ community, older people and those living in remote, rural communities.
The Covid-19 pandemic has supercharged these challenges, in particular driving exponential growth in the numbers of people dying at home.
Deaths in private homes in Wales were 32% higher in 2020 than the previous five year average, a trend which continued through 2021, and will continue into the future
This growing demand for end of life and palliative care means even more people with palliative care needs could miss out on care, and sheds light on how unsustainable our current approach is. Indeed, projections indicate that our ageing population, with children and adults living longer with more complex needs and multi-morbidities, will contribute to an increase of 25 per cent in palliative care need by 2040.
It is estimated that to meet future need in line with current trends in individual preference for end of life care, community palliative care and care home capacity will need to double by 2040.
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To meet this greater demand for end of life care in the community, hospice staff across Wales are playing a critical role in driving rapid developments in integration and greater collaboration between services for the benefit of people at the end of life, as well as fast-tracking adoption of technology to deliver care.
Key to creating better services that meet the future palliative care needs of both children and adults is building upon the collaboration, integration and local good practice developed during the pandemic.
In response, and to address this growing need, our report, Seamless and Sustainable, shares multiple examples of how local communities, hospices and health boards are working collaboratively to provide more accessible, coordinated, out-of-hours care for the increasing numbers of people choosing to die at home.
Alongside this, we believe more action needs to be taken to improve knowledge and understanding of a whole system approach to 24/7 palliative care across Wales; the development of a consistent approach to meeting the need for a personable, single point of access for adults in the community at the end of life; and an improvement of education, skills-sharing and a more joined up local and national thinking across the palliative and end of life health and care system.
We also welcome progress from the Welsh Government on its new National End of Life Programme, with the overarching ambition of taking a whole system approach where new models of care are made seamless and delivered as close to home as possible.
We believe this year offers a huge opportunity to make end of life care more accessible, equitable and sustainable, starting with the new National Programme prioritising overnight care at home for adults and children at the end of their lives.
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