Background We are an organisation that informs and empowers people to exercise their rights at the end of life. ‘Person-centred care’, ‘advance care planning’ and ‘choice’ have become buzzwords in the sector, yet we know from successive policy reports and from people who contact us that in practice these concepts are not always implemented effectively.
Aims To learn more about the experiences of dying people in order to inform our understanding of the barriers to person-centred care.
Methods We designed a mixed-methods exploratory study. This consisted of a questionnaire for dying people and carers, which we distributed via our service-users, social media and other third sector organisations. This received over 600 responses. We also conducted analysis of our service user monitoring and commissioned ‘BritainThinks’ to conduct four focus groups and ten in-depth interviews with the public, dying people and carers.
Results A number of key findings emerged from a thematic analysis of the research:
• people are not always given clear information about their symptoms, prognosis or treatment options
• when people want more information they do not always know the right questions to ask in order to obtain it
• people are not always supported to make meaningful choices at the end of life
• the extent to which people are empowered to make informed decisions about their care can have a direct impact on care quality
• opportunities to instigate conversations about future care are being missed.
Conclusions We are using the extensive data we have obtained to:
• update our policy calls
• develop resources to give people tools to improve their own care
• enhance our service development, including adding more clinical expertise to our information line.
Our study demonstrates the tangible thread that links learning from dying people and improving service delivery. We encourage others in the sector to undertake similar work.