A recent report by Dignity in Dying in the UK details the suffering endured by many despite excellent hospice care.
The Inescapable Truth, shines a light on the experiences of a small but significant number of dying people. The research found that even if everyone in the UK had access to excellent hospice care at the end of life, 17 people every day would die without adequate pain relief. The report pays tribute to the incredible work of hospices and all those who provide end-of-life care, but it is unapologetically honest in acknowledging that even the best care sometimes has its limits. It shows how unrelieved pain and other complex symptoms, as well as a lack of control over the dying process, can be unacceptable for dying people, many of whom would want the law to allow them the option of an assisted death.
Following the release of The Inescapable Truth Hospice UK issued a statement acknowledging that some people will have a bad death, “despite the very best care” and the “need to be honest and straightforward with people about what dying can be like”. Supporters of voluntary assisted dying welcomed the statement, especially whereHospice UK said that they “do not disagree with the findings in the Dignity in Dying report The Inescapable Truth About Dying” and “urge as many people as possible to read the report and debate the findings”.
To accompany the report, Dignity in Dying released a short film to demonstrate the effect that a bad death can have on dying people and the bereaved relatives who are left behind.
They were clear from the outset that the film was a fictional composite of some of the real experiences shared in their report. However, the film was criticised by some healthcare professionals and by Hospice UK as unrepresentative of the experience of dying people in hospices. Dignity in Dying responded with an invitation to meet and discuss their report and they have said “The film has helped to spark a discussion with organisations and individuals who have not previously engaged with the issue of assisted dying, and in that sense it has served its purpose.”
In the end Dignity in Dying agreed to take down the film at the request of Hospice UK so that these important discussions could take place in the spirit of co-operation between the two organisations.
Nevertheless they say that they will always stand with their members and supporters who have spoken out about their loved ones’ deaths, and whilst they are taking down the film, they will continue to acknowledge their experiences.
“We have been inundated with responses from members of the public that the film reflects their experiences of the deaths of their loved ones. We will be publishing some of the comments and feedback we have received alongside this statement. We, along with relatives who had watched a loved one experience a bad death, were appalled that some of those who criticised the film argued with bereaved family members that their experiences were somehow mistaken or misunderstood.”