A joint project by the Scottish Partnership for Palliative Care and Macmillan, Building on the Best is a new programme which aims to bring health professionals, patients, carers and families together to improve how hospitals support people who may be approaching the end of their life.
Around half of people who die in Scotland die in hospital. This means that it is important that hospitals are places where people receive good care at the end of their life. Hospitals also have an important role in caring for people who may eventually die elsewhere, since an admission to hospital sometimes prompts patients, carers and families to discuss and plan for their future care.
There are many challenges to delivering good palliative care and end-of-life care in busy hospital wards. One central challenge is that, whilst declining health is easy to spot, it is difficult for doctors be certain when a person is going to die. “Will the patient get well enough to leave hospital this time?” can be a hard question to answer.
This means that doctors, nurses patients and families are all dealing with great uncertainty. In these circumstances it can be helpful to think about different future scenarios. What if my health continues to decline? What if I go home but I get unwell again in a few months? What are my priorities in life now that my good health is so uncertain? In a high-pressure hospital environment it can be difficult for doctors and nurses to find the right opportunity to talk sensitively with people about these sorts of issues.
Patients and families may be unprepared or unwilling to discuss these matters at such a distressing time, and find it difficult to cope with the uncertainty that declining health can bring. A particular focus of this project will therefore be to enable good communication between patients, families and staff so that shared decision-making can take place.
Initial work is being undertaken in one site and the project aim is to work in three locations eventually. Staff, patients, carers and families will be asked about their experiences of end-of-life care and communication in hospital, what is good and where improvements can be made. These insights will inform the development and testing of practical improvements. The hope is that the lessons learned from this work can improve patient experiences in hospitals across the country.