Giving a voice to the voiceless

Why we won’t let bereaved relatives be silenced

We recently launched our new report: The Inescapable Truth, which found that even with universal access to specialist palliative care, 17 people a day would still suffer as they die.

To accompany the report, we 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.

We were clear from the outset that the film is a fictional composite of some of the real experiences shared in our report.

The film was criticised by some healthcare professionals and by Hospice UK as unrepresentative of the experience of dying people in hospices.

We responded with an invitation to meet and discuss our report.

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.

We have agreed to take down the film at the request of Hospice UK so that these important discussions can take place in the spirit of co-operation between the two organisations.

Nevertheless we will always stand with our members and supporters who have spoken out about their loved ones’ deaths, and whilst we are taking down the film, we will continue to acknowledge their experiences.

This is what some of them had to say about our film:

We need to recognise that bad deaths happen, even under the first-rate care of hospices.

Our film has given a voice to the voiceless – dying people and bereaved relatives.

We have had an outpouring of comments from people who say the film reflects their experiences.

To deny or attempt to silence these experiences does nothing to encourage honest conversations about dying.

We are not questioning that hospices provide excellent care to dying people, but as our report The Inescapable Truth shows, even the best care has limits.

We must all acknowledge the small but significant number who die badly despite expert care.

If we are serious about improving end-of life care in the UK, the experiences of dying people and their families cannot be invalidated and assisted dying needs to be part of the conversation.

We have been overwhelmed by comments from people saying that the film accurately portrays what they've seen...

Elizabeth witnessed the death of her younger sister.

This was her unpublished comment to the Sunday Times about our video and report:

I have rarely ever spoken to anyone about how my 37-year-old sister died. But I remember images every single day some five years later. Someone I follow on Twitter recently retweeted Dignity in Dying’s latest report and accompanying video, so I watched and I read.

What I saw wasn’t exactly what I’d witnessed. It was different. But it rang absolutely true.

Finally, here was an organisation admitting that a minority of people die in terrible suffering, something which all the good intentions of scented candles and gentle background music cannot alleviate. And finally, some were acknowledging that the best palliative care and strongest drugs in the world are sadly not always enough. I know this to be true.

What’s far more upsetting than a video using an actor to portray an unpleasant death is the fact that around 17 people a day in this country are apparently dying in circumstances as bad as or worse than that which is depicted in the video.

What is just as shocking is the fact that the outpouring of knee-jerk, angry responses on Twitter was mainly from medical professionals denying that such deaths ever occur.

Those who questioned these responses were patronised, ignored and blocked. The case numerous doctors and nurses were making was that as they’d apparently never seen a death like the one depicted themselves, that meant that such deaths never occur. Indeed, they stated that as fact.

What’s clear from Twitter is that there are many people who’ve witnessed deaths that are unimaginable.

I’m amazed at those medics who’ve denied this and utterly disappointed that most of them were unwilling to engage in discussion or debate around the issue.

Whether or not one agrees with the principle of assisted dying, it needs to be acknowledged that some deaths cannot be effectively “managed” perfectly and peacefully. We should all be discussing it as an issue rather than trying to silence the very real experiences of some because it’s not what we want to hear.

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.