Death and end-of-life care remain topics largely absent from public policy conversations, despite their growing importance in healthcare planning and social support systems. While efforts like UK Prime Minister Andy Burnham’s proposal for a National Care Service emphasize living well, experts argue that meaningful discussion about dying well is essential to address both the quality and cost of care in later stages of life.
The debate around death is often entangled with issues such as assisted dying, which the UK parliament has considered over the past two years without reaching a final decision. However, the scope of assisted dying legislation would affect only a small fraction of deaths, less than 1 percent, and the broader challenges extend far beyond this issue.
The way people die and the settings of death have shifted considerably since the establishment of the NHS and the hospice movement in the mid-20th century. Dementia and frailty have replaced conditions like cancer as the leading causes of death, with dementia now noted as the single largest cause of mortality. This shift poses difficulties for traditional end-of-life care frameworks, which often assume that patients can give clear consent or make advance care plans—an assumption not always applicable for many with cognitive decline.
Where people die has also changed, with an increasing number spending their final days in residential care settings rather than hospitals or private homes. Yet care homes in England do not have a statutory duty to provide end-of-life care, and many staff lack adequate training or confidence to manage deteriorations in residents’ conditions. This frequently leads to hospital transfers, which can be distressing and costly. The financial incentives in some care homes, particularly those owned or backed by private equity, may prioritize occupancy rates over the quality of end-of-life care.
The institutionalization of death has further distanced communities from the dying process, reducing opportunities for families and carers to provide familiar support, which can increase emergency hospital admissions. Additionally, increasing cultural diversity means that expectations and definitions of a "good" death vary widely, complicating efforts to design universally effective support systems.
Financially, healthcare spending during the last year of life in the UK approaches £12 billion annually, with over 80 percent allocated to hospital services. Despite the importance of end-of-life care, investment in adult palliative services remains limited. Analysis shows that only about £92 million was directed into adult palliative care by major UK foundations over the past decade, distributed across thousands of grants. Much of this funding maintains existing service delivery rather than driving systemic reform.
The hospice movement’s decision to remain separate from the NHS reflects concerns about bureaucratic systems diluting the personal and humane aspects of care. Nevertheless, reliance on charity and philanthropy is insufficient to meet population needs. Meanwhile, global investments prioritize longevity research focused on extending healthy life spans, often neglecting the specific requirements of terminal care.
Experts suggest that avoiding conversations about death stems from widespread fear and discomfort, which hinders critical planning and policy development. They advocate for openness and honesty about mortality to foster the creation of care systems that can ensure dignity, comfort, and adequate support at the end of life. Addressing these challenges does not necessarily require new legislation but rather a commitment to building structures that acknowledge the realities of death in modern society.