Good end of life care is a vital part of wellbeing, helping people and their families to feel more in control of their own wishes. This month we signed a letter that was published in the Independent from our member organisation Compassion in Dying, which highlighted the need for improvements to end of life care. The organisation’s work has fed into a wider CQC review into the use of DNACPR (do not attempt cardiopulmonary resuscitation) decisions during the pandemic and the actions required. A recent report published by Compassion in Dying shows that some of the public’s main concerns include protection from CPR and miscommunication about DNACPR, which have been exacerbated by the covid crisis.  

Meanwhile Compassion in Dying has also been supporting the work of the PRSB to develop standards for end-of-life care, so that we ensure we get the information right. A survey sent out in partnership with them attracted more than 1700 responses, one of the highest rates we’ve ever recorded. Many of the same themes that emerged through the Compassion and Dying report and CQC reiew were reiterated by patients and carers, highlighting the importance of shared information between health and social care. People want to feel involved in the decision making around their care and have faith that this information will be transferred correctly. A second strand to the work is now underway, to determine how younger people with life limiting or complex conditions feel their information should be recorded and shared. This survey will be issued in partnership with the charity, Together For Short Lives in the next month. 

For more information on the project or to get involved, please contact info@theprsb.org.