Don't Let Death be a Conversation Killer

15 March 2010
Failure to discuss death and dying hinders effective care planning in Britain

A surprising and worrying lack of preparedness for dying and death among individuals in England has been revealed in the results of a new survey today. 81% of people have not written down any preferences around their own death, and only a quarter of men (25%) and just over one in three women (35%) across England have told anyone about the funeral arrangements they would like to have after they die, according to new research from the Dying Matters Coalition. The survey also found that nearly two-thirds of people (60%) have not written a will – including a quarter (25%) of over-65s.

The findings have been published to mark the launch of the first Dying Matters Awareness Week. By encouraging people to talk about their own end of life issues with friends, family and loved ones, Dying Matters hopes to help make ‘a good death’ the norm for the more than 500,000 people who die in England each year. Many of the 7,000 member organisations of the Coalition are running events during the week to prompt conversations.

While many people at end of life are cared for and die in accordance with their preferences, many more do not. Societal attitudes towards dying, death and bereavement mean that people often fail to talk about what they want with family or loved ones until it is too late, meaning that people don’t manage to express important preferences, including whether they would prefer to be buried or cremated, whether they would like to donate their organs, or whether they would like to die in hospital or at home.

Dr Mayur Lakhani, a practising GP & Chairman, Dying Matters, said:

“It goes against our instincts to talk about death, but we must overcome our reticence. People should ask themselves: ‘If I were to die, what would I want my loved ones to know? Would they be aware of your wishes? If we don’t talk about what we want it will directly impact on our experience at end of life.

“This is vital as there is a major mismatch between people’s preferences for where they would like to die and their actual place of death. The End of Life Care Strategy noted that most people would prefer to die at home, but 60% die in an acute hospital. It is important to start the conversation early when people are well so that people are not caught unawares as dying and death is much harder to talk about when someone is ill.”

While people often consider the personal aspects of planning for their own death, these are not always discussed or written down. A lack of planning is possibly the most important reason why people’s wishes go ignored or unfulfilled.

Eve Richardson, Chief Executive, National Council for Palliative Care & Dying Matters, added:

“Without communication and understanding, dying can be a lonely and stressful experience, both for the person who is dying, and for their friends and family. Dying people can experience a tremendous sense of isolation and can feel shut out.

“It’s clear that people need help starting this important conversation around dying, death and bereavement with loved ones. The thing many people fear most about it is the loss of control – it’s often the process of dying rather than death itself that causes anxiety. We can reduce the fear of dying by encouraging more open discussions.”

Dying Matters believes that promoting greater openness and communication are the first steps towards helping people exercise greater choice at end of life, and has developed a range of information on death and dying, and supporting materials to provide:

-          advice on how to start a conversation and how to deal with people’s reactions

-          help around the timing of starting the conversation so that ‘too soon’ doesn’t turn into ‘too late’, and

-          techniques that enable people to raise the subject with different individuals in different settings.

Care Services Minister Phil Hope said:

“Death tends to be a taboo subject, but talking about it can make sure our loved ones know our dying wishes. That means people can get the care they want, where they want it at the end of their lives.

“Ultimately, I want to see everyone getting good quality care at the end of their lives. We fully support this coalition which is making an important contribution to our ambitious strategy to transform end of life care for all. Last week, we announced plans to bring forward proposals on a new right to die at home in the next Parliament.  We will work directly with stakeholders on how to create a right for people to choose to die at home.”

To find out more visit: www.dyingmatters.org

Ends

Notes to Editors

  1. The Dying Matters Coalition (www.dyingmatters.org) has been established to help transform public attitudes towards dying, death and bereavement in England.
  2. The Dying Matters Coalition was launched by the National Council for Palliative Care, a leading national programme commissioned by the Department of Health as part of the End of Life Care Strategy, published in July 2008. This strategy set out the case for raising public awareness around death, dying and bereavement, and gave responsibility for this task to the NCPC. It is made up of just under 7,000 members and includes organisations from across the  NHS and the  voluntary and  independent  health and  care  sectors,  including hospices, care homes, charities supporting old people, children and bereavement , from  social care and  housing sectors,  from a wide range of faith organisations, community organisations, schools and colleges, academic bodies, trade unions, the legal profession and from the funeral sector.
  3. More than 500,000 people die in England each year. Heart failure and stroke are the biggest killers. One in four people in the UK will die of cancer. With an increasingly ageing population the majority of older people will be living with a number of conditions. For example, around 30% of people over the age of 85 with cancer will also have dementia.
  4. ICM interviewed a random sample of 3,530 adults aged 18+ in England only via online panel between 26th Feb and 3rd Mar 2010.  Surveys were conducted across the country and the results have been weighted to the profile of all adults.  ICM is a member of the British Polling Council and abides by its rules.  Further information at www.icmresearch.co.uk  
  5. The comments in this release represent the views of the Dying Matters Coalition and do not necessarily reflect the views of member organisations.

For more information, please contact Joe Levenson, Head of Communications, on freephone 08000 21 44 66 / j.levenson@ncpc.org.uk

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