On 13 July, the Healthcare Safety Investigation Branch (HSIB) published a report stating that health and care services in England are not always able to provide individualised, equitable and co-ordinated palliative and end-of-life care to meet the holistic needs of people and their families. There is also limited information to help the public and health and care staff to identify, access, and understand the roles of different aspects of palliative and end of life care, with variation in words and definitions.

The report references a case of Dermot, who was diagnosed with rare sarcoma that had spread and was no longer curable. Dermot and his family faced a lot of difficulties during his palliative care. For example – during his inpatient care, his family described a limited ability to provide information about his condition before he was admitted, challenges accessing information about his progress, and not being able to visit him for the first few days.

Among its recommendations, the HSIB proposes that NHS England should ‘specify a palliative and end of life care data set to help integrated care boards to understand their populations’ demographics and needs, in order to support commissioning and improvement of services’.

PRSB developed the Palliative and End of Life Care Information Standard to enable recording and sharing information about people’s end-of-life-care wishes across the whole of the UK and to ensure that professionals and individuals have access to the right information when it comes to palliative and end-of-life care, putting the person at the heart of decision-making. By helping deliver personalised care at the end of the person’s life, the standard helps ensure that they have the end-of-life care they wanted.

Earlier this year, we created a toolkit helping health and care settings successfully implement the standard, which will address the issues included in the HSIB report and contribute to more consistent, standardised information sharing in palliative and end-of-life care. We are calling for the widespread adoption of the standard to help prevent scenarios like Dermot’s from happening and ensure that people receive the best care possible at the end of their lives.

Maureen Baker, PRSB’s Chair, said:  Everyone deserves to have the best care experience as they near the end of their lives. The HSIB report raises important concerns that should be addressed urgently. We strongly encourage health and care IT system suppliers and professionals to work with us on implementing the Palliative and End of Life Care Information Standard, which ensures that people’s needs and wishes are shared with professionals involved in their care, helping deliver high-quality care at this emotionally difficult time.”

To find out more about the Palliative and End of Life Care Information Standard and access the implementation toolkit, please click here.