Major jurisdiction-wide policy innovations are rare in palliative care. When one of these interventions is introduced with government support and a vigorous implementation program, but then runs into significant difficulties, it is vital to make sense of the factors at play. this paper draws on the concept of ‘borderline objects’ 1 to provide an in-depth analysis of a failed attempt to provide palliative care at scale. the liverpool care pathway for the dying patient (lcp) was an intervention based on an integrated care pathway. It arose from the hospice context and was promoted throughout the UK healthcare system for over a decade before it was suddenly withdrawn from use. it has become a critical learning point for those providing end-of-life care to large populations, and there is continuing interest in trying to make sense of its rise and fall.
There is a broader context for such concerns. The importance of palliative care interventions to alleviate suffering in the face of advanced disease and death has gained political, clinical, and academic support throughout the world 2, 3. Since the 1960s with the emergence of new programs of palliative care, the modern field of palliative care and end-of-life care grew rapidly in the last decades of the 20th century and has continued to progress, attracting widespread interest and support, and expanding its reach 4. the world organization of Health first defined palliative care in 1990 5 and in 2014 the World Health Organization Assembly issued a resolution urging all governments to adopt policies to support the provision of palliative care throughout life and in all relevant institutional and community settings 6. however, palliative care faces many challenges. is still underdeveloped in many low- and middle-income countries, and at the same time, well-resourced and advanced health care systems struggle to deliver its benefits, which have been demonstrated in specialized settings, across the broader spectrum of social and health care. services.
The epidemiology of death is also changing. increasingly, for many, death will follow a prolonged period of uncertainty, frailty and multiple morbidity in late old age. conversely, the rapidly progressive downward trajectory of death with its clear entry point into the death phase, which was central to the original cancer hospice model of palliative care, will become less common 7. a series is already emerging of complex challenges around prognosis, communication, and care planning for the critically ill or dying, especially in hospitals 8. The setting has given rise to numerous attempts to take specialist palliative care knowledge and apply it ‘to scale’ within the mainstream of health and social care. – in hospitals, residences and in the community.
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the lcp was a specific and concerted attempt to respond to these challenges. it was first described in a 1997 publication 9 as a means of transferring key principles derived from hospice care to general health care settings such as hospitals and nursing homes. it was endorsed by successive governments and, in particular, adopted as a key initiative within a national program and strategy for end-of-life care in england and wales 10. then, in the face of mounting criticism and following a requested national review by the government, led by Baroness Julia Neuberger in 201311, was abruptly discontinued. An extensive discussion ensued, seeking to understand how this had happened and why the lcp had “failed”.
our purpose in subjecting the lcp story to detailed scrutiny is to go beyond positions seen so far in the literature. these are polarized between simplistic and retrospective “guilt” for their limitations, often from sources that until now had said nothing about it; or on the contrary, sorrow for his disappearance. Both trends are evident in the many published reviews, particularly in the post-2013 clinical literature 12, 13. Rather, we sought to provide a theoretically informed analysis of the rise and fall of LCP and conclude with comments that might be relevant to the future policy and practice in the context of complex health systems where the character of terminal illness is undergoing significant change. Our aim is to answer the following questions: 1) Why and how did the LCP come to prominence as a vehicle for policy and practice? 2) What factors contributed to its disappearance? 3) What immediate implications and lessons resulted from its withdrawal?