Report: Role of specialist palliative care in providing support to care homes in England

This survey of organisations providing specialist palliative care services to care homes highlights the good work they do and identifies the key challenges they face.

The report, commissioned by Public Health England, undertaken by the Marie Curie Research Centre at Cardiff University, with input from the National Council for Palliative Care and Hospice UK, examines the role of specialist palliative care in providing support to care homes in England.

This survey of 108 specialist palliative care services based in hospices, the community or hospitals  was conducted between November 2016 and January 2017. 90% of those surveyed had been providing services to care homes for 10 years or more. Just over half provided services within one Clinical Commissioning Group (CCG) area, while 5% covered 5 CCGs. 72% were specifically commissioned to provide palliative care support in care homes, while the other 28% were providing  ‘at home’ specialist palliative care that included people living in care homes as a usual place of residence. 

Currently 22% of deaths in England take place in a care home (including nursing homes). Although 84% of those surveyed said they provided education or training to care homes, the report found a need to reinforce learning across the sector. High turnover of staff was a big obstacle to improving end of life care in care homes, affecting continuity of care and uptake of training. The report also found that specialist palliative care performance measures were more focussed on processes than outcomes and that there could be more emphasis on capturing patient and carer experiences. 

The report makes several recommendations, including better data collection, a focus on patient related outcomes rather than numbers, and ways to improve staff training including raising awareness and attainment of key competencies in palliative care. 

Alisha Newman, author of the report and Research Associate at the Marie Curie Research Centre at Cardiff University, said: “The report provides a set of recommendations that can be acted on straight away. However, more needs to be done to provide consistent and sustained support to care home staff. The views and experiences of patients and families also need to be considered if we are to develop and deliver high quality, evidence-based and person-centred palliative care services in care homes in the future.”

Annmarie Nelson, Scientific Director at the Marie Curie Research Centre at Cardiff University, said: “Our work takes a look at the relationship between specialist palliative care and care homes. By analysing the free text boxes within the survey we have been able to reflect an encouraging overall picture of patient centred services, goodwill and the delivery of needs-based support despite the challenges in this setting.” 

Tracey Bleakley, CEO of Hospice UK, said: “This survey shows just how important it is to focus on specialist palliative care services to support care homes. It shows that there are dedicated and passionate staff, but a lack of good data, coordination and focus on support to develop and delivery excellence in end of life care. With so many people in care homes in need of good palliative care, nobody should settle for anything less than the best.”

Professor Julia Verne, Clinical Lead for PHEs National End of Life Care Intelligence Network: “We are grateful to everyone who took part in this survey.  Over one in five of people now die in care homes. Among those people who die when they are aged 75 years and older 38% will have spent some time in a care home before their death. This report shows how specialist palliative care services are trying to support the people who live and die in care homes. For the first time we know more about the challenges in doing so.”

The full report can be downloaded here.