New research, commissioned by NHS East of England, shows that most people in the region say they feel comfortable discussing death. Despite this, many have not made plans for their end of life wishes.

The new research found that whilst the majority of people say they feel comfortable having discussions about their own death, a large proportion have not discussed it with their nearest and dearest, nor planned for it in terms of ensuring their wishes are met.

The research was published on the 17th of May 2011 at the east of England end of life care conference which coincides with national Dying Matters Awareness Week.

The ‘Attitudes Towards Death and Dying in the East of England’ research was commissioned by NHS East of England and conducted by Ipsos MORI. Ipsos MORI used a postal survey, discussion groups and depth interviews to explore people’s attitudes towards death and dying and end of life care.

The research found that whilst 73 per cent of people in the east of England say that they are very or fairly comfortable with discussing death, a smaller number had discussed particular aspects of their end of life wishes. Just over half (54%) have had conversations on at least one aspect, including religious preferences, place of death, privacy/peace, dying with dignity and medical and nursing care but very few had discussed all aspects.

Although over half of respondents (55 per cent) said they would prefer to die at home, few have made any preparations for the end of their lives. The NHS wants to encourage people to plan for end of life care as this will help clinicians meet people’s wishes and improve the provision of care to those approaching the end of their lives.

Only 43 per cent of people surveyed had written a will, 34 per cent have an organ donor card and 27 per cent have arranged their funeral. Furthermore, people are less likely to have made plans for their end of life care than for after their death. The research found that people are generally less comfortable, as well as being less equipped, to make plans for the care they may need towards the end of their life.

While the likelihood of making plans rises with age, there remains a significant proportion of people aged 75 or over who have not made plans. Less than half (48%) of this age group have planned their funeral, just 14% have planned the financial side of their end of life care, and less than one in 10 (9%) have not made any of the plans asked about.

The most common reasons for not discussing end of life preferences are the feeling that death is a long way off, and a desire not to upset loved ones. The feeling that discussing death can be uncomfortable prevents people from making their needs and preferences known and, therefore, makes it more difficult for families and the NHS to give patients the care that they would like to receive at the end of their lives.

This reluctance is one of the reasons given by the elderly and people living with long-term conditions. Over half (56%) of people aged 75+ who have not discussed any end of life wishes say they have not done so for fear of upsetting others, while people living with long-standing conditions are significantly more likely to say they do not want to upset their loved ones (34% compared to 18% of those without long-term conditions) and that there is no one for them to discuss it with (14% versus 3%).

Dr Dee Traue, Chair of NHS East of England’s end of life care work stream, said: "This research highlights that death remains a taboo subject when speaking to family and making plans for end of life. A general lack of knowledge around what plans people can make and why they need to make them along with a reluctance to speak about their wishes with family for fear of upsetting them, means many people don’t make plans to ensure their preferences are met in the event of their death. "Most people would choose to die at home, yet the majority will die in hospital. Unless we can get people to talk openly about their wishes and engage doctors and nurses in helping them plan for their end of life care, we will not be able to deliver the care and support they need to achieve this. The findings from this research will give us the tools needed to work with our local population to make their wishes a reality."

The report published on 17 May entitled Attitudes Towards Death and Dying in the East of England Report can be viewed in full at http://www.eoe.nhs.uk/page.php?page_id=2157