“A good send-off?” Patients’ and families’ experiences of End of Life Care

Healthwatch Brighton & Hove talked to 15 patients on the Oncology Ward at the Royal Sussex County Hospital about their discharge from hospital between November 2019 and January 2020 and followed up with them once discharged.

All the people they spoke to had been in hospital longer than one week (‘stranded’) or longer than 3 weeks (‘super stranded’) and all had been in hospital numerous times before, with most being readmitted through the Emergency Department (ED). Patients fared better when they had support from specialist services for their End of Life Care such as the Hospital Discharge Team, the hospital Palliative Care Team and Martlets Hospice.

Consideration needs to be made around the appropriateness of terminally ill patients having the same pathway as other patients in ED. Questions were raised around how NHS staff, patients and families understand the role of a hospice. There was confusion for families about what services were available in the community and how they could be accessed.

Interviews with families and patients demonstrated the need for improvement in how they are informed and involved in treatment choices and care at end of their life. More routine information is needed for both patients and their families to access the support that is available

Quality standards and agreed policies and practices need to be in place to support ‘a good death’. All those involved in End of Life Care need to establish a shared understanding of what ‘a good death’ looks like, including actively involving patients and families, by engaging with them. There are pockets of excellent care which can inform this

The report contains 10 recommendations to improve end of life care.  The report includes responses from service providers.