We have a problem with palliative and end-of-life care, but it's not all about money and beds
Recent news about palliative and end-of-life care in the UK has been focussed on the lack of money for hospices and bed closures, but there's a bigger debate about the value of palliative and end-of-life care, both to the people who need care and the impact on the wider healthcare system.
A bigger debate
There have been lots of stories on the state of palliative and end-of-life care in the UK in recent months. The prevailing theme has been focussed on the lack of money for hospices and concerns about bed closures.
These stories, however, are detracting from a bigger debate regarding the value of palliative and end-of-life care, both to the people who need care and the impact that good provision can have on the wider healthcare system, including the NHS.
With a 55% increase in demand for palliative care expected by 2031, the sector must be ready for the future and find innovative ways to meet the challenges facing society today.
42%
The number of people who die in hospital, while 78% want to die at home.
Uncomfortable realities
The availability of palliative and end-of-life care is currently not good enough. As the chief executive of one of the biggest providers of palliative care, this is a difficult statement to make.
I am not talking about the kind, highly skilled and supportive care that is delivered on a day-to-day basis at Sue Ryder, or the care provided by dedicated palliative care professionals all across the UK.
That care is among the best in the world. The sector succeeds daily in supporting people to live their lives in a way that they choose, despite the challenges they face.
We are, however, collectively not reaching everyone who needs palliative care, with one in four people missing out on all the care they need.
Reach into less affluent communities, to older people, to those living with multi-morbidity and complexity, to rural communities and to people from a minoritised ethnic group is low.
And while 78% of people want to die at home, 42% of people die in hospital.
A greater level of complex care
The hospice sector has certainly been a huge success and is, rightly, much loved by those whose lives it has touched. But the model of care that we all know grew up in the 1960s and 70s.
Life expectancy is now very different – in 1948 when the NHS was founded life expectancy was just 65 years for men and 67 years for women. Over the past 76 years this has increased to around 82 years.
But with these additional years comes a greater level of complex care being needed.
The Government’s response to these challenges, through the 10 Year Plan for the NHS, is to shift more care into the community and to focus on prevention.
We cannot, of course, prevent death, but we could support people earlier in their illness to alleviate their suffering and reduce (prevent) dependency on scarce resources, like hospital beds and GP appointments.
Can you imagine the public outcry if some people didn’t receive support for the birth of their baby?
If birth was like death
Around 300,000 people receive care from the hospice sector, but 600,000 people die each year in the UK.
Can you imagine the public outcry if those statistics were applied to any other area of health, if some people didn’t receive support for the birth of their baby?
This is what is happening in palliative care right now.
Birth and death are life events that unite us all – surely, there should be parity and the sector must take the lead on how we can reach a greater number of people.
A new approach to palliative and end-of-life care in hospitals
There are five key ways to bridge these gaps to address the crisis being reported, which would create an innovative ecosystem for palliative care that creatively disrupts the current norms.
Sadly, eight percent of people referred to Sue Ryder in-patient care die before reaching us.
Rethinking what hospices are
All these changes are possible and there are examples of forward-thinking initiatives that are doing elements of these in pockets of the country, but this is not how hospices have come to be thought of, either by the public or by large parts of the NHS.
Increasingly, people are being admitted to hospices later in their disease. Sadly, eight percent of people referred to Sue Ryder in-patient care die before reaching us. This doesn’t have to be the case.
Earlier intervention and referrals, and specialist day clinics to support symptom management in the community, would revolutionise the way we think about palliative care and the role it can play in not just managing death, but enabling life to be lived fully until the end.
The time has come for palliative care, with its approach to enabling someone to live as well as they can, to emerge as one of the priorities within the NHS.
There needs to be a new debate that focusses on people, not buildings, and listens to the needs of all communities across the country.
A new debate
I want to see a debate around these opportunities. A debate about a need to evolve models of care and seek innovation to rise to the challenges.
News stories about bed closures, in many cases, cement a perception of loss that is sometimes greater than the reality.
Money is, of course, important. The current resources within the hospice sector are woefully inadequate to achieve the reach required. But the current model of care will not do this either.
A new model of care that is shaped for the future must be embraced rather than continuing to do what has always been done.
In-patient hospice beds are important, but we must look honestly at why there are many hospice beds that are currently unoccupied. In many cases, beds are not operational as more people want their care at home.
There needs to be a new debate. A debate that that focusses on people, not buildings, and listens to the needs of all communities across the country.
This would move the country on from talking about palliative and end-of-life care not being good enough, to finally fixing it.
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