Jonathan Tiley, a second-year History and Politics student at St John’s College, has recently launched the Oxford Campaign for Assisted Dying. He sat down with me to talk about his reasons for launching the campaign, ambitions for a future vote in parliament and the ways in which students can become involved.
I began by asking Jonathan his reasons for starting the campaign, which he tells me begins, in a personal sense, with two rather sad stories; “with my grandparents, I’ve seen how with end-of-life palliative care, there’s one way that you want it to be, and there’s the reality of how it actually is.” In 2016, he witnessed his late grandfather suffering intense pain during cancer, pain which could have been relieved were it not for the laws about increasing morphine levels. “This” he says, “obviously caused a great deal of stress to myself, my dad, and my brother, to see such a proud, dignified man, who had lived an inspirational, active life – he was a proud cyclist, proud business owner – towards the end of his life going through this immense amount of pain. The palliative care, and the pain relief he received, was limited due to the law on assisted dying. That’s when I was first made aware that this didn’t quite seem right.” This sense, he suggests, was intensified by his family’s experience of saying goodbye to his great-grandmother. A remarkable woman who had lived the last 10 years of her life without fluent speech, who was the object of much love and affection from family, friends and those caring for her, struggled as she found herself bed-bound, living “a life in her last 3 months where she wasn’t in control of her own destiny.” As a result of “a very archaic law which isn’t compassionate,” Jonathan feels keenly the difference between his chance to say goodbye to his great grandmother a few weeks before she died “while she remembered me and could understand what was going on, when she was able to be loving and wasn’t in pain” while his family “saw her deteriorate, saw her living a life she frankly didn’t want to have and an end she didn’t deserve.” This hit a nerve, he says, causing him to realise “people who have given so much to their communities, families, proud dignified people…our law doesn’t allow them a compassionate death.”
with my grandparents, I’ve seen how with end-of-life palliative care, there’s one way that you want it to be, and there’s the reality of how it actually is.
In terms of the need for a campaign, Jonathan stresses that there is nothing wrong with trying to create change here and now, rather than doing it long-term after university. He wants to be able to raise the profile of an issue in a way which will cause parliament to take note, eventually leading to a free vote. “It’s the issues that rumble on, that affect people’s day-to-day, that get all the media attention and political debate – quite rightly, issues concerning the NHS and cost of living crisis do get the political space – but issues like assisted dying don’t. I concede it doesn’t affect everybody, but when it affects you, it really affects you. It takes hold of you in a way you can’t expect: you feel guilt, you feel shame, you’re forced to look your relative in the eye and question why they can’t get the ending that they deserve.” When you strip the debate back, “you realise that all the arguments against seem to fade away. Taking away the statistics, if you really strip it back it’s about people, people who are suffering, who are not allowed a dignified and compassionate death. And it’s about the families.”
I ask Jonathan what he is specifically campaigning for. His objective is to champion debate about the issue from a variety of angles. There’s the political side of the debate, there’s “the question of why this has not been brought to parliament in seven years, if there’s opinion polls which support it – which we’ve seen recently, with YouGov saying 73% of the population support assisted dying? You’ve got a situation where you have an issue which really bridges party, drawing both Conservative and Labour voters. At a time when we’re so divided, it’s an issue which people come together over. So why isn’t it getting the political oxygen that it needs?” There is also the legal side, which Jonathan envisions as looking into the legal dynamics of recent cases to examine the need for change. He describes one recent case involving a man called Duncan, who wanted to take his own life but was unable, due to motor neuron disease, to do so in a way which would be fully classed as suicide, “So even though he fully laid out to the police that this was his choosing, his wife Susan had three months when she was investigated by the police. While grieving for her husband, she also had to go through this incredibly difficult, painful legal process, which I think highlights the many questions that this topic brings up.” The third side he’s also keen to discuss is the medical side of things; “Yes people have this debate over morals, about society beyond living, but also fundamentally this comes down to a medical question. If assisted dying became legal then it will have to be those in palliative care that administer that. I think it would be a really interesting speaker event to try to get someone who would likely be someone to administer the legal injection, and to discuss how that would play out.” Doing the campaign in this way, he suggests, encourages people to look at the debate from a multitude of angles.
As Jonathan seems keen to see the debate from multiple perspectives, I ask him what he finds to be people’s most common concerns about the issue, and how he would aim to tackle these. He lists three major concerns: coercion; care; palliative care funding. In terms of coercion, Jonathan understands why people have this concern, and feels it needs to be addressed. “But” he tells me, “in the countries where assisted dying is legal, study after study has shown that this isn’t the case. A good indicator of that is the number of people who choose to go for assisted dying but then decide against it, which indicates a sense of decision. Coercion, rushed process, the cases of this are incredibly low, in the minutiae of cases. People don’t take this decision lightly, this isn’t some sort of free-for-all state-sponsored suicide, this is a decision which people take a great deal of time and effort to really carefully consider, and that’s shown in the countries in which it’s legal.” In answer to the concern that such a system might be exploited, he responds simply that “if you really think about it, when it comes to any palliative care or structural care the NHS provides, its always open to exploitation. It’s about trust, the relationship between doctor, patient and nurses is one of trust. I think it would be a sad indictment of society and the medical profession if we wouldn’t legalise assisted dying because of lack of trust. I don’t believe in that as a defence.” Finally, he rejects the idea that funding for palliative care would be reduced if assisted dying were to be legalised, which he says simply isn’t the case. “palliative care has to be improved. But currently, palliative care can reduce suffering but it can’t end it. With assisted dying, there is a time and place for pain to be ended.” The statistics, he says, show that as many as 12 terminally ill people a week commit suicide, a phenomenon which causes immense trauma and distress for those involved. “Whereas if this was done in a hospital setting,” Jonathon suggests, “it would reduce these to a simple process, which would mean the hardship and the trauma that the family and emergency services receive would be reduced.”
I think it would be a sad indictment of society and the medical profession if we wouldn’t legalise assisted dying because of lack of trust. I don’t believe in that as a defence.
The campaign itself will consist of a twofold approach through speaker events, socials and debates, with one aim to increase the profile of the debate, and the other to push for a vote in parliament on the issue. “We want to look at what sort of society, and what sort of care, and end of life, we want to give to many people in this country. If the campaign could achieve that, I think it would be really worth it. That’s why I’m very keen to do this, and I hope people reading this will also be keen to get on board.” Jonathan’s pleased to tell me that he’s already received a lot of support and enthusiasm for the campaign, that “It has really warmed my heart and given me a lot of hope that so many people have reached out and said they want to get involved and help out in any way they can.” To get involved, he says, you can follow them on Facebook or Instagram (@oxfordcampaignforassisteddying), watch out for the Campaign on the JCR pages, and get involved in events when they start in Trinity, and bring their friends with them. He emphasizes that you don’t have to agree with assisted dying in order to get involved – “The aim is to raise the profile of the issue, and get the discussion going. There are obviously people that are against it and people who disagree with it. As much as I have a right to start this campaign, people have a right to come along and respectfully, compassionately disagree.” Ultimately, he wants to raise awareness and encourage debate, as well as showing, in his opinion, that assisted dying gives people a way to die which is “loving, compassionate and free from pain.”
The campaign is on Facebook, at: https://www.facebook.com/oxford.campaign.for.assisted.dying
Also Instagram, at: https://www.instagram.com/oxfordcampaignforassisteddying/
Image Attribution: The Oxford Campaign for Assisted Dying