Thinking about mortality comes quite naturally to many of us living with degenerative conditions and it turns out that it can be an occupational hazard. During the pandemic for example, five of my acquaintances and friends tragically passed away, mostly because they had similar long-term health issues, but also my limited mobility means I exercise with an over-60s walking group - which implies it is an inevitability.
Feeling uncomfortable already? Death often makes people squirm in their seat - perhaps it’s this finality that some can’t come to terms with. Unfortunately, the Assisted Dying Bill has been rumbling on in the government for decades and the debate appears to be paralysed, in limbo - much like how our illnesses behave.
On Friday 19 May, faith leaders in Scotland met with Holyrood to voice their opposition to proposals which recommend that competent terminally ill adults could request help to end their lives. The Church of Scotland, the Catholic Church and the Scottish Association of Mosques were objecting to Liberal Democrat MSP Liam McArthur's Member's Bill, who lodged the original draft proposal in September 2021. The religious establishments, however, disingenuously said that the principle itself “inevitably undermines the dignity of the human person”.
What much of this negotiation fails to do is have an actual conversation without bandwagoning. Death is not something that can be neatly packaged away into for or against camps - we need to first be able to have a grown-up conversation about it - which means embracing what it may end up looking like for some. Many of us hope that it ends quickly, peacefully, and with as much dignity as possible. However, it can be agony for others, which is where the organisation Dignity in Dying has been attempting to change the tide.
The UK-based organisation advocates for the right to die, changing the law to allow terminally ill, mentally competent adults to have the option of an assisted death. According to YouGov, which conducted an opinion survey of 2,049 adults in Great Britain between 13 and 14 January 2023 in association with the group, 74% of respondents think the law should be changed to allow doctors to assist in the suicide of someone suffering from a terminal illness. Only 13% of respondents said they would oppose such a change in the law.
In response to this, Dignity in Dying Chief Executive Sarah Wootton issued a stark warning to Westminster, saying: “it can choose to ignore the evidence of the dangers of the status quo, or it can accept its failings and find a way through to give dying people the safeguarded choice they want and need.” In France, a citizens’ assembly saw 75.6% of participants vote in favour of legalising assisted death, bringing it one step closer to that of the Netherlands, which already carries it out.
Dr Kathryn Mannix is considered a pioneer in palliative medicine, having worked in teams in hospices, hospitals and in patients’ own homes to deliver palliative care, optimising quality of life even as death is approaching. Speaking to NationalWorld, she said we do not often think about death because it makes us feel melancholic, and as a result, “people reach the end of their lives wishing they knew more”.
Having qualified as a cognitive behavioural therapist in 1993, she started the UK’s first CBT clinic exclusively for palliative care patients. Her book With the End in Mind: Dying, Death, and Wisdom in an Age of Denial was shortlisted for the Wellcome Book Prize and looks at the importance of public awareness surrounding death in order to reduce fear.
“If it makes us sad then maybe it's going to make the person that I try to talk to about it sad,” she says. “And that feels like maybe that's not a kind thing to do but it turns out that not talking about it also makes us sad.”
Dr Kathryn Mannix
“I'm not worried about doing the dying. I know that that's ordinary and I’ve seen it lots of times"
Having helped thousands of dying people, Dr Mannix believes that better public awareness about what happens as we die would reduce fear and allow people to discuss their hopes and plans with the people who matter to them. When her own stoic grandmother was reaching the end, she turned to her and said: “I'm not worried about doing the dying. I know that that's ordinary and I’ve seen it lots of times [...] What worries me, she says, is I don't think that your mum and her sister and brothers have ever seen a person die.”
Dr Mannix tells me that these days, our encounters with death is limited to what we see in the news, TV and online, which often shows the most horrific portrayals. And although she admits that it does happen this way at times, it is only a part of the story. Difficult and uncomfortable deaths caused by disease and poor health are apparently the exception, and she says “the earlier we can start to get the plans in place for whatever the symptoms might be that particular illness causes”, the easier the transition.
At the end of the day, Dr Mannix is also on the fence about assisted dying, because “they are shouting at each other and they are not listening to each other.” After 30 years of working in this field, she said she would still hate this happening to somebody that she loves.
At the same time, the palliative expert is quick to add: “If that's a statistic of about one person in a thousand, then the chances that it's going to happen to any of us are pretty low. It doesn't mean we should ignore it, but it means that we need to think about other things as well.”
It’s not a case about who is right or wrong in terms of the assisted dying bill - it’s about actually acknowledging what this means in real terms. What does this mean for power of attorney? How would this impact those who aren’t on board with it? And more importantly, what makes a good or bad death? If we’re not willing to confront these questions, then there’s no real point in talking about a bill.
When life is difficult, Samaritans are here – day or night, 365 days a year. You can call them for free on 116 123 or visit samaritans.org to find your nearest branch.