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Celebrating Cicely- 100 Papers that Changed Palliative Care

By Anna Johnston and Katherine Sleeman

On 22 June, we celebrated the centenary of the birth of Dame Cicely Saunders. In tribute to her inspiration as the founder of the modern hospice movement, the Cicely Saunders Institute launched a Twitter campaign 100 papers that changed palliative care showcasing our most novel, important or impactful research to date. As we mark the final day of the campaign, we reflect on the landscape of palliative care in the UK, and the challenges we face over the next 100 years.

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©photo by Derek Bayes

Dame Cicely’s pioneering work contributed in a large part to the UK being ranked top in the 2015 ‘Quality of Death Index’ report from the Economist Intelligence Unit. The report compared the quality of end of life care in 80 countries worldwide, ranking them according to whether there were effective national policy frameworks, and the extent of investment, community outreach and training in palliative and end of life care.

Yet, Cicely Saunders Institute research has shown that there is still much work to be done.

Population-based research  conducted at the Cicely Saunders Institute has highlighted the challenges that our ageing population and the rising number of annual deaths will have on end of life care provision and infrastructure. We have shown that preferences for place of death are most commonly the home or hospice, and that there has been an encouraging fall in hospital deaths and an increase in home and care home deaths over recent years. However, with a predicted 25% rise in annual deaths in England and Wales by 2040, care home and community provision need to double to sustain this trend, without which we will see hospital deaths begin to rise again.

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The final paper in our series, which will be tweeted later today, examines the priority policymakers in England give to end of life care, and highlights where future improvements are needed. The study found that half of regional Health and Wellbeing Strategies in England did not mention end of life care at all, while only 4% judged it a priority area. One overarching issue raised by the study was the often-generalised aspirations for improvement, which lacked a clear connection between local end of life care need, an aim for improvement, and identification of an evidence-based intervention.

The Cicely Saunders Institute has identified interventions, such as the Breathlessness Support Service  and Neuromuscular Electrical Stimulation (NMES) that can improve outcomes for patients who are approaching the end of life, and their carers. Collaboration between academia and policymakers is needed to ensure such evidence-based interventions are incorporated into future healthcare strategies. The Cicely Saunders Institute will continue to produce impactful research and to engage policy makers, building on Cicely’s legacy to improve end of life care for all.