Talking about dying

Between July and December 2019 Healthwatch Oldham carried out a review of palliative and end of life services.  The review was chosen in response to feedback from local partners about aspects of end of life care.  The report is informed by three pieces of research: a survey to ask the general public how comfortable they feel talking about dying and sharing their wishes with family and friends to which 131 people responded; in-depth interviews with 22 families who had supported a family member at the end of their life and a survey of professionals involved in the treatment or support of patients accessing palliative or end of life care. A total of 31 professionals completed the survey.

Families and carers shared many positive experiences about palliative and end of life care in Oldham, and 65% of respondents felt that the person they cared for had the best possible end of life. The research identifies the factors in positive experiences of end of life care.

The report considers the factors in good and poor experiences of end of life care. When it works well there is good communication and central coordination of services across different settings with professionals working together to ensure continuity of patient-centred end of life care. The report raises concerns about communication issues, particularly at diagnosis and when people are asked to repeat their stories either to different services that should be working together or to different staff from the same service.  People with multiple conditions often experienced different levels of care compared to those with a single terminal condition.

Both families and professionals wanted more flexibility of end of life services and easier access to advice and support 24 hours a day. Feedback from families highlights how the quality of care varies across different settings and depends on the individual professionals working with the family.

During the last three months of life 16 carers in the research provided considerable amounts of unpaid care and families struggle to access additional support due to delays with end of life funding. The effects on a carer can be considerable both in terms of their physical and emotional wellbeing. Only 41% of carers who took part in the review were offered bereavement support.

The report contains 13 recommendations on co-ordinated care, timely identification, planning of care, communication, the need for consistent care, access to hospice at home care, information and advice, easy access to end of life funding and care for the last weeks of life, access to training for professionals, support for carers and access to bereavement support.