In twenty-first century Britain why are many people struggling to get the care they need at the end of life?
As CEO of national hospice and end of life care charity Hospice UK, this is what keeps me up at night.
The template for modern hospices was created over 50 years ago by Dame Cicely Saunders at St Christopher’s Hospice, supporting people with cancer, for whom a cure was no longer possible.
Fast forward 50 years and hospice and palliative care straddles numerous conditions including heart failure, neurological conditions and dementia.
People are living for longer, often with multiple conditions. Families no longer live near each other and the fastest growing demographic over the age of 65 are single person households.
All of this challenges our assumptions about the standard template of end of life care.
During my many visits to hospices, hospitals and care homes across the country, I’ve witnessed incredible care, supporting people to live well until the end of their lives and to die peacefully and with dignity.
I’ve also been privileged to shadow community nursing teams and spend time in families’ homes when a loved one is dying. This is the mainstay of end of life care, with 84% of people supported at home, where the vast majority wish to spend their last days.
But I’ve also seen that the end of life care system is not reaching everyone who needs this vital care.
More than 100,000 people in the UK miss out on end of life care across all care settings and for a range of complex reasons.
And overall the need for palliative care is set to increase 25 per cent by 2040.
I also worry that certain communities such as LGBTQ+ people and those from Black, Asian and Minority Ethnic (BAME) communities feel disadvantaged by current provision. Also those with conditions other than cancer who are often referred for end of life care in smaller numbers and later than those with a cancer diagnosis.
All end of life care providers are finding it challenging to meet this immense growing demand – how we will all care for our loved ones in the future is something that keeps me awake at night.
Hospices in particular are facing serious funding challenges and, like other care providers, are facing difficulties in recruiting staff.
During my visits to children’s hospices, I have heard how many are struggling to find nurses and other care staff to deliver their specialist care. While this can be due to different reasons, including geography, a lack of awareness about the end of life care sector is a key factor.
I know from speaking to hospice, hospital and care home staff across the country just how rich and rewarding a career in end of life care can be, but many healthcare professionals often do not discover that until much later on.
Finding skilled and compassionate staff is crucial but we also need new solutions for supporting people through the last phase of their life.
There is clearly a case for radical change by the sector to adapt their services to increasing demand for their care and this is something that Hospice UK is working with providers to achieve.
We urgently need more sustainable funding for end of life care services, and more thought about how to support our ageing society, balancing long- term conditions with continued independence and a good quality of life.
We also need a step change in our culture – a greater openness to talking about death and dying which will in turn help us focus on what really matters to us, our families and our communities.
The challenges are many, however working in the hospice and end of life care sector is a privilege. The tireless dedication of staff who always go the extra mile to provide comfort and care during really difficult times shows humanity at its very best and continues to inspire me.