Millions risk leaving it too late to discuss dying wishes

New research has revealed that although people are more confident about discussing death and planning end of life care, millions are risking leaving it too late to do anything about it.

A trio of Teesside University academics were handpicked to analyse data compiled within the British Social Attitudes Survey.

The findings, released to coincide with national Dying Matters Awareness Week, 13-19 May, revealed that although 70% of people say they feel comfortable talking about death, only 5% report having a living will or advance care plan, while just 11% have made written plans for their funeral.

It is the lack of direct action around planning for death that is putting people at risk of not getting appropriate end of life care and making it harder for families to deal with bereavement.

Professor Janet Shucksmith, Director of Teesside University’s Health and Social Care Research Institute, was one of the Teesside academics who analysed the data for a chapter within the British Social Attitudes Survey.

She said: ‘Unfortunately it’s only a minority, who are translating their thoughts and feelings about end of life into actual discussions or actions.

‘We often still seem keen to avoid discussion of dying. This lack of openness has adverse consequences. People can be unnecessarily frightened about the process of dying or unable to make crucial decisions about end of life care.’

The research, which involved more than 2,000 people nationwide, is the first time the authoritative British Social Attitudes Survey has asked specific questions about death and end of life care.

Along with Professor Shucksmith, Vicki Whittaker, Senior Lecturer in Research Methods and Research Fellow Sarit Carlebach, also from Teesside University’s Health and Social Care Institute, were responsible for analysing the Dying Matters Coalition data.

The research also reveals a major mismatch between where people want to die and current trends in where they actually die. Latest NHS figures show that more than 50% of people die in hospital. Yet the survey results show that just 7% of people say they would prefer to die in hospital, compared with two-thirds (67%) who would prefer to die at home.

Other key findings from the research include:

• The main reason people gave for not discussing death was that they feel it is a long way off – even those in the older age groups. • Just over one in three people, 35%, have a will, down on the 2009 figure of 39% - with the impact of economic pressures being a possible cause of this decline • The majority of the public, around two in three, would prefer to die at home • Being pain free, retaining dignity and being with family or friends were how most people defined a ‘good death’ • The main thing that would spur people into taking action in terms of planning for their death would be the wish to make it easier for family and friends.

Professor Shucksmith said: ‘Barriers to discussion for most people revolve around death seeming ‘a long way off’, even for those in the older age groups, although perhaps that conceals a superstitious belief that not talking about the topic helps keep it that way.

‘The big challenge is to see talk being consistently translated into concrete actions. Actions like making a will, setting out funeral or financial wishes, having an advance care plan/living will or registering as an organ donor remain relatively uncommon. While these may be small actions in themselves, they are likely to trigger conversations about the way in which someone wants to reach the end of life.’

Eve Richardson, Chief Executive of the Dying Matters Coalition and the National Council for Palliative Care, added: ‘It’s encouraging that older people are becoming more comfortable discussing dying and their end of life wishes, but as a nation too many of us are still shunning the conversations that can help avoid heartbreak and regret at the end of life.

‘You don’t have to be ill or dying to make plans for your future, which is why we are calling on people across the country to take practical steps by writing a will, recording their funeral wishes, planning their future care and support, considering registering as an organ donor and telling loved ones their wishes.’

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