Dignity in Dying’s response to Hospice UK

Following the publication of the Dignity in Dying’s new research report, The Inescapable Truth, and the release of an accompanying video , Hospice UK CEO Tracey Bleakley and Chief Clinical Officer Carole Walford wrote an open letter to Sarah Wootton, Chief Executive of Dignity in Dying. This is her response

Dear Tracey,

I am writing in response to the letter I received from yourself and Carole Walford. I understand that you have published the letter on Hospice’s UK’s website and, to be clear, I will also make this response publicly available.

First of all, thank you for contacting me about our latest report, The Inescapable Truth, and the accompanying campaign film. Whilst I am keen to have a dialogue with you, I want to state at the outset that Dignity in Dying will not be taking the film down and that we fully stand by its content and the intention behind releasing it. Our aim with both the report and the film is to prompt honest discussions about what’s happening now and what needs to change. We know that hospices provide the best possible care for dying people, which is why we are calling for dying people to have both universal access to specialist palliative care and the choice of a safeguarded assisted death, for the minority of people who suffer unbearably even with the excellent hospice care we have in the UK.

I am pleased that both yourself and Carole, as well as many others, have commented on the merit of the report. Whilst welcome, comments such as these to some extent justify the purpose of the campaign film. In November 2017 we published an equally compelling and well-argued report detailing how dying people seek alternative means to access assisted dying overseas in Switzerland. This was also intended to prompt open debate yet the predominant reaction from the hospice sector to that report was silence. A similar reaction has greeted the heart-breaking stories of Geoffrey Whaley, Richard Selley and countless others. By its very nature releasing a provocative film will prompt a range of reactions, but if it encourages people to engage with the issues that lie at the heart of our campaign then I will not apologise for that.

I have spoken to many people who feel a deep frustration at the fact that a dramatised depiction of suffering has prompted more outrage from some than the real suffering we all know occurs every day.

You will have seen that alongside the strong negative reaction to the film by some people, there has been an equally strong outpouring of gratitude by a significant number of bereaved family members and friends. Many people identify with the suffering depicted in the film and feel the experiences of their loved ones have been acknowledged and their grief has been validated as a result. I would be happy to send you a collection of these comments as they are moving and eye-opening. It’s also worth noting that we were clear from the outset that most people will not have the kind of deaths described in the report – but some people do, as both the research, and the reaction to the film from members of the public makes abundantly clear.

Your letter raises the possibility of the video exacerbating present fears and anxieties that exist around death and dying. As you will know from having read the report, we considered and could have made a film reflecting the personal testimonies of those who contributed to the report. I’m sure you can appreciate why we chose not to portray a dying person experiencing a fungating wound, faecal vomiting or a terminal haemorrhage; it would have been far more distressing than the film we released. A palliative care consultant interviewed for the report talks about the “utter degradation” one of their patients found themselves in, not because of poor care, but because of the horrific reality of their condition. I do not accept accusations of increasing fear and anxiety around the dying process; we have simply sought to be honest about what suffering some people may be forced to endure at the end of their lives. Whilst this isn’t true of Hospice UK, it’s worth noting that some of those who have accused us of scaremongering themselves play an active role in trying to block the legalisation of assisted dying, an end-of-life option that we know would significantly reduce fear and anxiety for countless dying people.

Most accept assisted dying will one day be legalised in this country. The case against changing the law in the UK weakens month on month as more and more countries change their own laws, following the continuing safe practice overseas and the growing body of evidence of the shocking failures that arise without legislation. Just like so many other socially progressive causes, we will look back on law change as being sensible and compassionate, while viewing the suffering that persists without it with a mixture of disbelief and horror that we allowed such an unjust situation to continue for so long.

Whilst there will always be a small faction of people with deeply held beliefs who will attempt to skew the debate, our focus must be on ensuring a rational discussion not on if the law should change, but on when and how. I feel Hospice UK should be part of that conversation – I have no doubt you, and many of your team and your members feel the same. I hope we can move beyond disagreements about the film and instead focus on our shared goals, first and foremost our efforts to promote more honest and open conversations about death and dying. On that note, I would like to suggest a meeting between you, Robert Peston, Molly Meacher and me to discuss our new report, as well as how we overcome this current impasse and the ways in which we can work together in the future.

With all best wishes,

Sarah

Sarah Wootton
Chief Executive