It is often said that English people do not like to talk about death. Last week's publication of the first national survey of the bereaved has gone some way to dispelling such a notion. The survey had an impressive response rate. Almost half of those who were contacted as part of the survey responded. By doing so, more than 22,000 people were expressing a willingness to talk about the care and treatment their loved ones received in the last months and days before they died. This meant having to deal with some very difficult issues at a time when they were doubtlessly still in the midst of coming to terms with their loss. The survey asked them to consider personal recollections of the months and days leading up to their loved one's death; their experiences of different services; the levels of care received; the use of pain relief; and the degrees of dignity afforded to their partner, family or friend in the last days of life.
This all shows that contrary to popular wisdom, many English people do want to talk about death and dying. They want to tell their loved ones' stories, to praise good care and help identify poor and negative experiences, so that they might improve things for other families in the future. This all feels like an important part of the grieving process, but one which also provides an important public service. By giving their time and their views, these respondents are helping to improve our collective understanding of death and dying. They have given those who design and deliver health and social care services the opportunity to learn from people who have the most direct experiences possible of what are often euphemistically called 'end of life services'.
The English people have spoken. So what have they told us? First they have confirmed some of what we know from elsewhere, that the experience of hospital care at the end of life is too often a poor one. Previous studies have suggested that many people are dying in hospital when there is no medical need for them to be there. Hospitals are clearly not the best places for the majority of people to die. This is particularly true of those who have long term conditions whose care can, and should be planned over a longer period and evolve as and when their condition changes. We can and must do better for such people.
The survey points us in the direction of hospices as a more responsive model of care for dying people. It makes clear that whether it is in terms of overall quality of care in the last three months, or in the last two days before death, respondents rated hospices care highest. Some 92% of respondents rated the care they witnessed through a hospice in the last three months of life as being good or excellent. This compares with a good or excellent rating of 68% for care provided by hospital nurses.
Importantly, whether it is in relation to the use of pain relief (in the last three months of life), or the question of whether they thought their loved one had been treated with dignity and respect, the ratings for hospices are substantially higher than those for hospitals. This strengthens the need for us to take what hospices do for dying people and their families out into a range of other health and social care settings. Hospice care clearly appears to be working. It also underlines the need to strengthen education and training for doctors and nurses to equip them with the knowledge and skills needed to deliver the most effective care for dying people.
The survey and the views which accompany it provide us with an extraordinary insight into the experiences of thousands of people and their families during the last months and days before death. It is for those of us who are committed to delivering excellent quality, personal care for dying people to listen to the voices of those who have spoken through this survey. We must heed the valuable lessons on offer.
It is also important that this survey is regularly repeated, so that we can use it to measure performance on an on-going basis and to increasingly focus on improving the provision of local services for people who are dying throughout the country. It cannot be right that your geographical location determines your access to pain relief or the likelihood of you being treated with dignity and respect in the last days before death.
Finally, it would be great to see this fantastic initiative being picked up by the devolved administrations in Scotland (building on the previous small-scale survey in 2008), Wales and Northern Ireland, so that bereaved people in all parts of the UK can share their experiences.
Follow Imelda Redmond CBE on Twitter: www.twitter.com/MarieCuriePA