Why we must tackle the crisis in end-of-life care | Letters

Your editorial on hospices (29 October) was right to highlight the crisis in end-of-life care. As the National Audit Office’s report makes clear, unless urgent action is taken, the system will be overwhelmed. More than 5.75 million deaths are expected in the next decade, and over 5 million of those people will need palliative care. Too many face dying in avoidable pain, in poverty and alone. And when dying people can’t get the support they need close to home, they often have no choice other than visiting A&E, calling out an ambulance, or being admitted to hospital at crisis point. Our research shows people in their final year of life already account for one in six emergency admissions and almost a third of hospital bed days. As our population ages and a greater number of people die each year, without action this will place our health and care system under ever greater pressure. In 10 years, the need for end-of-life care will rise by 10% compared with today. More than 60,000 more people will need care every year. Yet we have no 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, backed by sustainable funding.Dr Sam RoystonExecutive director of research and policy, Marie Curie • Your editorial says the National Audit Office report “must be a wake-up call for the government”, but what about the hospice sector? Financial sustainability is important for hospice charities but the available money, whether government or fundraised income, can’t prop up the system in its current form. The truth is, that system has not addressed inequity for some time and if, collectively, we fail to evolve, we will be complicit in caring for a lower percentage of dying people in future. You note that hospice provision advantages wealthier areas. It also underserves people from diverse ethnic groups, which means 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 government to ensure all people are supported by charitable providers of palliative care – in their homes, in hospices and in hospitals. It is time for the hospice sector to wake up too.James SandersonChief executive, Sue Ryder • Two points you miss in your otherwise perceptive editorial on the hospice sector. First, another of Cicely Saunders’s well-known quotes highlights an aspect of hospice care that often gets overlooked: “How people die remains in the memories of those who live on.” Research shows that the post-bereavement phase for families, carers and loved ones can be influenced greatly by the circumstances of death. A “bad” death can have knock-on consequences for those directly involved, their communities and the wider system that a “good” death, with appropriate support, can ameliorate, if not prevent. Second, it is important to note that Cicely was not only a nurse and social worker, but also a doctor by the time she founded St Christopher’s. And she had already embarked on the groundbreaking research into pain control that began to transform how we care for those reaching the end of their life. Two points that I’m sure my aunt Cicely would be making for herself if she were still with us.Kate KirkChair of trustees, Cicely Saunders International • My mother was diagnosed with cancer and told she had six months to live. She actually “survived” for six more precious years with palliative support at home. Those years taught me that dignity in dying depends not only on good medicine, but on mindset, family and the systems that make it possible to live – and die – well in familiar surroundings. Hospices and palliative teams do exceptional work, yet they are too 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 that work together so that care becomes a continuum, not a response to crisis. That conviction led me on a long path convening a new international standard, ISO 25553 for Smart Multigenerational Neighbourhoods. Due for publication next May, its purpose is profoundly human: to guide governments, planners and care providers in creating places where support is embedded in everyday life, across generations and abilities. It translates Cicely Saunders’s vision – “You matter because you are you” – into a practical blueprint for policy and design, consistent with the aims of the NHS long-term plan, to shift care closer to home and make better use of digital innovation. If ministers are serious about responding to the NAO’s warning, they could start by adopting this framework as a foundation for reform, a kind of neighbourhood health service for the modern age. It provides the architecture for a system that values continuity over fragmentation, connection over isolation, and dignity over dependency. If we truly value life, we must also re-imagine end-of-life care and design for dying well. Not as an afterthought, but as an integral part of what makes a society humane.Ian SperoFounder, Agile Ageing Alliance • Have an opinion on anything you’ve read in the Guardian today? Please email us your letter and it will be considered for publication in our letters section.