Why we must address the end-of-life care crisis Nursing homes
Your editorial on hospice (October 29) was right to highlight the crisis in end-of-life care. As the National Audit Office report makes clear, unless urgent action is taken, the system will collapse. More than 5.75 million deaths are expected to occur in the next decade, and more than 5 million of these people will need palliative care. Many people face death from avoidable pain, poverty and loneliness. When dying people can’t get the support they need close to home, they often have no choice but to visit an emergency department, call an ambulance, or be admitted to hospital at the point of crisis. Our research shows that people in their last year of life already account for one in six emergency admissions and almost a third of days spent in hospital.
As our population ages and more people die each year, inaction will put our health and care system under greater pressure than ever before. Within 10 years, the need for end-of-life care will increase by 10% compared to today. More than 60,000 people will need care every year. However, we do not have a plan in place to address the scale of this challenge. In fact, the last national palliative care strategy was written nearly two decades ago.
The UK Government must commit to a national delivery plan for palliative and end-of-life care, supported by sustainable funding.
Dr. Sam Royston
Executive Director of Research and Policy, Marie Curie
Your editorial says the National Audit Office report “should serve as a wake-up call to the government”, but what about the aged care sector? Financial sustainability is important for aged care charities, but available funds, whether government or income raised from donations, cannot support the system in its current form. The truth is that this system has not addressed inequality for some time, and if we collectively fail to evolve, we will be complicit in caring for a smaller proportion of people who die in the future.
I have noticed that the provision of nursing homes benefits wealthier areas. It also does not serve people from diverse ethnic groups, meaning that in both poorer areas and more diverse communities people are forced to rely on 999 and A&E for end-of-life care. The sector needs to work with the government to ensure everything People are supported by charitable palliative care providers – in their homes, hospices and hospitals. It is time for the aged care sector to wake up too.
James Sanderson
chief executive officerSue Ryder
Two points you miss in your care sector aware editorial. First, another famous quote by Cecily Saunders highlights an aspect of aged care that is often overlooked: “How people die is remembered by those who live.” Research shows that the post-bereavement period for families, caregivers and loved ones can be significantly affected by the circumstances of the death. A ‘bad’ death can have serious consequences for the people directly concerned, their communities and the wider system, which a ‘good’ death, with appropriate support, can mitigate, if not prevent.
Second, it is important to note that Cecily was not only a nurse and social worker, but also a physician at the time she founded Saint Christopher. She has already embarked on pioneering research into pain management that is beginning to change the way we care for those who reach the end of their lives.
There are two points I am sure my Aunt Cecily would make clear to herself if she were still with us.
Kate Kirk
Chairman of the Board of Trustees, Cecily Saunders International
My mother was diagnosed with cancer and told she had six months to live. She actually “survived” for another six precious years with palliative support at home. Those years taught me that dignity in dying depends not only on good medicine, but on the mindset, family, and systems that make it possible to live — and die — well in a familiar environment.
Hospices and palliative teams do exceptional work, yet they are often disconnected from the wider fabric of community life. The National Audit Office is right to call for urgent reform, but this challenge goes beyond funding: we need neighbourhoods, homes and health systems working together so that care becomes a continuum, not a crisis response.
This conviction led me a long way towards setting a new international standard, ISO 25553 for multi-generational smart neighbourhoods. Due to be published next May, its purpose is very humanitarian: to guide governments, planners and carers in creating places where support is an integral part of everyday life, across generations and abilities. It translates Cecily Saunders’ vision – “You matter because you are you“- into a practical policy and design blueprint, aligned with the NHS Long Term Plan objectives, to shift care closer to home and make better use of digital innovation.
If ministers are serious about heeding the NAB’s warning, they can begin to embrace this framework as a basis for reform, or a kind of modern-day neighborhood health service. It provides the basic structure for a system that prefers continuity over fragmentation, connection rather than isolation, and dignity rather than dependency. If we truly value life, we must also reimagine end-of-life care and design to die well. Not as an afterthought, but as an integral part of what makes society human.
Ian Spiro
Founder of the Aging Aging Alliance