The ageing population will have serious consequences for end of life care and hospices must respond to meet future needs, says Steve Dewar
We know our society is ageing. But until now little attempt has been made to understand the consequences for palliative and end of life care.
In January, the Cicely Saunders Institute at King’s College London published a report on Current and Future Needs for Hospice Care. The work is part of Help the Hospices’ supported Commission into the Future of Hospice Care. The commission aims to help hospices understand future challenges and plan to meet future needs.
The report makes it clear that the number of people dying each year is set to rise from 2016 and that this rise is a steep curve. In England, the number will increase by more than 4,000 a year from 2021 to 2025 and by more than 8,000 a year from 2031 to 2035.
In 2010, 1.4 million people were aged 85 or older and deaths in this group represented 36 per cent of all deaths; by 2035, this figure will be 3.5 million and deaths in the over-85s will represent half of all deaths in the UK.
‘The demand for care towards the end of life will rise and the nature of that care will become more complex’
In 10 years the number of deaths caused by cancer is expected to increase by 30 per cent for men and 12 per cent for women, and in just eight years the number of people living with dementia will rise to over a million.
The demand for care towards the end of life will rise and the nature of that care will become more complex. That hospices will need to change in response is beyond doubt.
There is evidence that hospices are gold standard providers of care to patients and families with complex medical and psychosocial needs. However, the opportunity and the test for hospices will be whether they can develop the greater reach, accessibility and complexity of service required to meet these needs.
The call for new thinking must extend to commissioners and other providers of health and social care, who will need to think creatively and strategically about how to get the best from hospices: embracing their many roles, not only as service providers but also as educators, and as centres of volunteering as well as professional expertise.
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The highly cost-constrained environment brings a wider debate about escalating healthcare costs. Hospices have much to add to a public discussion about the balance between healthcare intervention and the attention to quality of life that lies at the heart of their care.
The evidence also tells us that older people and people with non-malignant conditions are less likely to receive timely referrals to palliative care. Hence, new partnerships are going to be vital to establishing and evaluating new models of care – reaching out to people in their communities earlier in their illness and connecting with other specialist providers.
Hospices will need to work hard and work alongside others if they are to reduce inequities.
Getting care right in the future
Underneath the demographic headlines, hospices will want to better understand the future users of hospice care, their needs, preferences and wishes. Most importantly, they need to learn more about the needs and preferences of older people who often express a preference to die in a hospice but are more likely than other groups to die in a hospital or a care home.
Current strategies for end of life care emphasise meeting people’s choices. However, this report reveals the way in which people may trade off preferences over the place of care with other issues regarding the quality of care and the burden on carers.
We need a better understanding of individual preferences, and society’s priorities about the healthcare we want and can afford.
‘Innovation must be rigorously evaluated for effectiveness and cost-effectiveness as well as being speedily spread and adopted’
Current data is rather clunky. The report demonstrates that we have no robust way of understanding the extent of hospice care in the community or the actuality of who may have been involved in delivering end of life care received at home or in a care home. This will become increasingly important as hospices use alternative and innovative ways to bring their care to the individual and discover whether hospice-supported deaths achieved across a range of settings can better meet individuals’ needs and preferences.
Crucially, such innovation must be rigorously evaluated for effectiveness and cost-effectiveness as well as being speedily spread and adopted. Hospices will need to meet this challenge and will require robust partnerships with academic departments to ensure they generate the critical evidence necessary to do so.
The challenges ahead
Progress will require leadership, as well as the astute use of resources by individual hospices and those organisations that represent hospices nationally.
As the future rushes headlong, hospices and the wider universe of new health and social care commissioners and providers must address difficult and persistent questions about the best use of their undoubted expertise and experience.
Following on from this report, the Commission into the Future of Hospice Care has publishedFuture Needs and Preferences for Hospice Care: Challenges and Opportunities for Hospices. This focuses on the challenges and opportunities for hospices in the future. This paper reflects on the stark challenges outlined by the report by the Cicely Saunders Institute, and presents some priorities for hospices to focus on to prepare for the markedly different future.
Steve Dewar is consultant to the Commission into the Future of Hospice Care