Wow! Dignity in Dying’s [DiD] new film [*this film was taken down by DiD on 27.9.2019- see their statement here*] is powerful and upsetting. It has been produced for maximum pathos and – I choose this word carefully – horror. The skittish cuts, the unnatural angles, these interwoven with the scene of a regretful daughter who is explaining to her son how his Grandad died. She lies, telling the boy that he slipped away peacefully. We see the truth, that his pain was uncontrolled and that he begged for it to end. We are reminded that 17 people die like this every day. Palliative care fails this small but real cohort of terminally ill patients. So why on earth wouldn’t we legalise assisted dying?
This film has caused a strong reaction. Kathryn Mannix, author and palliative care consultant, has described it as an ‘outrageous, terrifying misrepresentation’. Other palliative care doctors and nurses have emphasised that they have not seen deaths like this, despite having looked after many thousands a patients in hospices or hospitals.
As a supporter of assisted dying I found it hard to watch and extreme.
Then I read the accompanying report, in which evidence that some patients develop symptoms that cannot be controlled by conventional palliative care is presented. The 17 patients per day number is derived from an estimate of the number of patients per year for whom pain killers, anti-emetics etc do not work (for various reasons). This is 6394, out of 456,733 requiring palliative care in total. 1.4%. A small number, but enough, one would think, to justify an allowance in law.
We can debate the evidence in the report, which is supported by personal, tragic stories of poorly controlled symptoms. However well palliative care serves patients overall, I think it is reasonable to accept that some do have symptoms that are poorly controlled, and an even smaller number wish for nothing more else than for the misery to end – i.e. to be killed. Those who support AD will find that the report reinforces their view. Those who oppose it may find it over-dramatic, non-representative… i.e. spin.
I can imagine the screen test. Some people in the room may have had doubts. Is this too much, too strong? It’s scary. Is it right and responsible to make lay people think that this is how people die? Then, the decision. We go with this. We need a strong message. You don’t change the opinions without causing some waves. What are we here for? – to change the law…
I find myself torn. I support DiD’s mission. I dislike the film, which I find emotionally manipulative, over-produced, and yes, scary. Does it really matter that the film is so strong? After all, the throes of agony depicted by this actor have certainly been witnessed in real life, and the guilt felt by the daughter probably has definitely been experienced by relatives. The video doesn’t pretend to be representative of the dying process in the UK, but an extreme example of dying from within the 1.4% who do not respond to conventional treatment. It is non-representative, but is not a lie (well, I do doubt that ’17 people will die like this tomorrow…’).
The debate is a painful one. Over 100 million people in the world can legally access assistance in dying, so DiD’s mission is not eccentric or extreme. The film is. We live in an era of strong messages, punchy presentations, and no holds barred PR stratagems. Polarisation is the mood of the moment, not calm collaboration.
If I had been in the screen test room I would have voiced concern about the risk of this film causing distress. I would have asked for the jittery, nightmarish fast cuts to be taken out, for the tone to be taken down a few notches… but yes, maybe it is necessary to communicate in some way that there are patients for whom an assisted death would be best. The report is an interesting one, useful, and I hope the accompanying film doesn’t distract from its importance.
Meanwhile, those who support AD but respect highly their non-AD supporting colleagues (in palliative care and other areas), will keep talking, debating, and finding common ground.