John Hughes: The UK will slip from world leaders in palliative care if complacency replaces progress

John HughesThe Quality of Death Index report from The Economist Intelligence Unit once again ranks the UK as providing the best “quality of death” and “quality of palliative care” as compared with 80 countries around the world. The report uses a number of indices to reach its conclusions in what is an extremely well researched document.

The exemplary features of the highest scoring health economies include a national policy framework for palliative care, relatively high levels of healthcare expenditure, good specialist and generalist palliative care training, financial subsidies (from the charitable sector in the case of the UK), availability of opioids, and public awareness of palliative care.

However, even within the UK, there are notable failings. The report highlights examples of poor symptom control at the end of life, poor communications with patients and families, and inadequate generalist and specialist out of hours services.

The report notes the UK’s May 2015 Parliamentary and Health Service Ombudsman report, which identified that end of life care could be improved for up to 355 000 people a year in England; highlighting tragic cases where people’s suffering could have been avoided or lessened with the right care and treatment. Failings related to poor symptom control, poor communication and planning, not responding to the needs of the dying, inadequate out of hours services, and delays in diagnosis and referrals for treatment.

Therefore, looking at the report from all sides, there is reason for congratulations but not complacency. Leaving aside international comparators, which form the basis of the report, there are some important messages within the document.

The first is language. The report correctly distinguishes between palliation and end of life care, which are all too easily confused in the UK. It also assumes that end of life care refers to the terminal phase of an illness rather than the unhelpful phrase “last year of life,” which has become commonplace in this country.

Importantly, palliative care is stated to be “applicable early in the course of an illness in conjunction with other therapies intended to prolong life.” This is a crucial statement as it detaches palliation, and by association palliative care specialists, from only being relevant to the dying patient. It is also an important message for the general public who may be unwilling to accept palliative care if it is regarded as purely a herald of imminent death.

The second is the role of the palliative care “specialist.” Only the UK, Australia, and Germany, of the 80 countries analysed, are deemed to train sufficient multidisciplinary specialists, including voluntary sector hospice workers. Given the difficulty the UK is facing with nurse and doctor recruitment, this may be an area of concern in the future. Not only does the UK need to attract more clinicians into the “specialism” of palliative care, so too do those “specialists” need to become educationalists in their own right to ensure that the principles of high quality palliation are embodied in the culture and development of generalists.

The third message in the report is the demographic shift of palliation into the care of complex and vulnerable older patients. These are patients who do badly in a hospital environment and who, generally, would choose to be cared for in their own environment if at all possible. The case is well made in the report for palliative care to be seen as an integral part of community services. Ironically, this calls into question the role of hospices for this group of the population, and where the hospices of the future (given the increasing survivorship from cancer) feature in the provision of palliative and end of life care, particularly for frail older patients. A shift to community and “own residence” care is a clear direction of travel but, given the mix of funding in the UK palliative care system, there are some financial hazard lights.

This leads to the fourth message in the report, which aligns high quality care with high levels of spend. For the UK to maintain its ranking at the top of the index there needs to be recognition of, and a debate about, long term funding. Palliative care risks a triple whammy. Firstly, a flatlining NHS economy is clearly a threat to a system under pressure from those demographic trends which drive up palliative care costs. Secondly, social care, which must underpin successful community provision, is increasingly underfunded. And thirdly, a move away from hospices to community based palliative care may reduce charitable donations, which are often (in the minds of the public) more easily attributed to bricks and mortar than service provision. The strategic clinical direction for palliative care also needs to be aligned with a realistic financial strategy.

The UK must also do better in its provision of 24/7 coordinated care. Research commissioned to support Sue Ryder’s “Dying doesn’t work 9 to 5” campaign showed that a staggering 92% of areas lack appropriate coordinated support services, and this lack of provision leaves people scared, alone, and desperate for help during times of need.

Overall, the UK does well in the Quality of Death Index, but with 3 million people expected to die by 2020, the sector must do better in its provision of 24/7 coordinated care; it must strive to get the language and culture right; and, surely, there has to be an honest debate about the future of recruitment and funding across the health and social care environment.

It would be a tragedy if the UK slipped from its position as an exemplary world leader in palliative care and let people down at the most difficult time of their lives.

Dr John Hughes is the medical director at Sue Ryder, a leading provider of personalised hospice and neurological care in the UK. John has a strategic role in the development of all clinical aspects of Sue Ryder’s service delivery and is passionate about ensuring the charity provides first class care for service users. As a former GP in South East Hampshire for over 30 years, and as a former medical director and director of clinical strategy for Hampshire Community Health Care, John also has firsthand knowledge of practice based commissioning.

Competing interests: None.