17th June 2010 - Dying Matters - A Good Death

Market research company Explain has been commissioned to carry out regional research about what people think makes 'A Good Death' with the objective of ensuring that 'the voices of individuals, groups and organisations across the North East are given an equal opportunity to be heard'. The research information will then be used to inform the content and tone of a regional charter to guide the provision of relevant services and support.

Explain designed a comprehensive research programme which embraced several different methods to gather the feedback. The programme involved qualitative and quantitative feedback over many months of fieldwork and featured a microsite for both stakeholders and the general public to provide their views.

The overall aim of the consultation was to understand whether the charter for 'A Good Death' was understandable, accessible, meaningful and deliverable, using insight and feedback from care providers and the public. To many this meant confronting a taboo topic.

Explain was then invited to present the findings at a national 'Dying Matters' conference in London to 250 delegates alongside a number of other specialists and both the health and shadow health ministers. This national launch, which was featured on BBC television, was then followed up with a regional launch in Newcastle.

Key findings included aspects of the charter that nearly everyone considered of overwhelming importance; to remain pain free, to die with dignity and with loved ones around or nearby. The majority would like, where possible, to die at home when in fact the reverse is true – that many still spend their last weeks in a hospital.

When the charter eventually becomes public it will be used by providers of healthcare, social care and other support services to ensure end of life care is delivered within a certain framework and set of standards.

Explain worked with NHS North East and regional Department of Health staff on the project. Keith Aungiers, Head of Projects and Intelligence for Public Health North East said, "This is a major programme which is unique in the UK and has implications of huge national and regional significance. It was excellent that we were able to work together in researching a draft charter in the region. Explain demonstrated a thorough understanding of the brief and I was pleased with the professionalism of the team in tackling this complex subject. Explain's researchers demonstrated their ability to work in a highly sensitive area of health and wellbeing. To conduct lengthy face-to-face interviews with people nearing the end of life and with carers, at a very emotional time, demands experience, special skills and engagement. Explain's work in leading our programme of on-street surveys, an online questionnaire, focus groups, and in-depth interviews was instrumental in giving us a rich source of qualitative and quantitative data which will be of particular value in implementing the charter across the region."

Professor Edwin Pugh, Consultant in Palliative Medicine and End of Life lead, said, "I am delighted that through Explain's work we have a very sound evidence base of the attitudes of people in the north east to death and dying. Explain has also helped confirm that the "Good Death" charter has the support of the public. The work now begins to embed the regional charter into wider society to help create what we hope will be a society more compassionate to those who are dying and those that care for them. Our next steps will be to look at employing community development workers to work with community groups and organisations, to engage community and faith groups, to look at matters of equality and diversity and explore links with local government and employers to develop compassionate planning and human resource policies. It is an ambitious programme which requires a strategic approach."