Following the publication of our The Inescapable Truth research report and the release of an accompanying video , Hospice UK CEO Tracey Bleakley has recognised the importance of the research but also called for the video to be taken down. Dignity in Dying responded and this open letter from our Chief Executive, Sarah Wootton, is part of that continuing dialogue.
Thank you for your response to my letter, dated 18th September. I assume based on our previous correspondence that your letter to me will be made public and in the spirit of transparency and openness I will also make this reply publicly available.
I am glad that you agree with the need for an open and honest debate on the experience of end-of-life care. Both The Inescapable Truth and the reaction to our film has exposed a truth that many, including those who provide excellent care to dying people, simply will not acknowledge.
There are a small but significant number of people who will die every day, including in hospices, without adequate pain relief and with uncontrollable symptom, including in hospices, despite their first-rate care.
Separately to this, you will no doubt have seen the news today that Mavis Eccleston, an 80-year-old woman from Staffordshire, was acquitted for helping her husband of more than fifty years to die on his own terms, rather than continue to suffer from end-stage bowel cancer. We heard from several people in The Inescapable Truth report that some people can suffer in great pain and with terrible symptoms even with excellent care. For those who would rather have an assisted death than face the uncertainty of knowing whether their deaths will be comfortable and dignified, we need to provide a safeguarded choice rather than forcing dying people to take drastic actions to end their lives at home or abroad.
Between Mrs Eccleston’s case, the numerous cases cited in The Inescapable Truth report and the deaths of Geoff Whaley and Richard Selley this year, it is clear that the laws on assisted dying in the UK are not working well. And yet many stakeholders in the end-of-life care sector would prefer not to comment on these cases – indeed their only participation has been to criticise the film without further comment on the issues raised. We would welcome Hospice UK and other individuals and organisations who provide such excellent care to people at the end of life engaging constructively in the debate on assisted dying so that a new law could be drafted that was fit for purpose, provided choice to dying people and worked alongside our excellent hospices and palliative care providers.
The huge number of people who have responded to our film saying it reflects the deaths of their loved ones would not be served by ignoring their stories. Indeed it would be a dereliction of our duty to our supporters to read their testimonies and remove a film that validates their own experiences. Respectfully, therefore, we will not take it down unless you are willing to accept the premise of the film: that some people will die bad deaths across care settings, including in hospices, even with the very best care in place, that these deaths can be distressing for dying people and their loved ones and that we need to be honest and straightforward with people about what dying can be like, even if bad deaths are a reality for a relatively small minority of people. If you and Robert Peston on behalf of Hospice UK were willing to make a public statement to that extent and agree to meet with me and Molly Meacher to discuss the findings of the report and a joint way forward, we would be in a position to take the film down.
I understand some of your colleagues have very strong beliefs on this issue but that others quietly acknowledge that some people do need complete choice at the end of life to avoid unnecessary suffering.
I hope we can continue to find common ground and move forward in the best interests of dying people in the UK so that everyone has the opportunity to have the good death they deserve.
With all best wishes,