Assisted Dying – more light less heat

In my weekly blog this week I am going to focus entirely on Assisted Dying in light of the first debate on draft legislation this week. A rare chance for parliament to act freely and with compassion. In fact I am going to share my very good friend Helen’s latest Substack Post. She speaks much more powerfully than me and I have referred to her several times previously. Please read, share and help spred the word(s).

So here goes:

I’ve been to parliament today, participating in a panel chaired by Kim Leadbeater MP, on the draft Assisted Dying Bill. It’s been an enormously affecting experience. Twelve of us presented our stories to assorted MPs and journalists. Some of us had terminal illnesses and were thinking about our future. Two had accompanied their loved ones to Dignitas, and were immensely grateful for the care and opportunity for a peaceful and loving death they were offered there, despite the pain of their loss. Both acknowledged the injustice of it being possible for them because they could afford the exhorbitant costs that many others can’t. Both had to carry the loneliness of not being able to include others in their plans for fear of repercussions – many goodbyes missed and both of them having no company on their terrible return journeys. The others told utterly harrowing stories of the agonising deaths their loved ones had had to endure. Experiences you would not wish for anyone.Thanks for reading My Heart in My Two Hands! Subscribe for free to receive new posts and support my work.SubscribedI’ve supported assisted dying for as long as I can remember, and have been volunteering for Dignity in Dying since March this year, when my friend Paola died at Dignitas and I promised to carry on her extraordinary work. When I was asked to join tonight’s panel I was honoured to contribute to this potentially historic piece of legislation. In the two minutes I had to speak, this is what I told:My name is Helen, I’m a 56 year old mother and psychotherapist and in 2020 was diagnosed with stage IV terminal breast cancer. I have a wonderful life and am not ready to die, but my disease means I am almost certainly going to before my time. My hope is for a peaceful death facilitated by my palliative care team much like I witnessed for my beloved father-in-law. However, unlike him I am allergic to morphine – we know this happens for some people. Also, my cancer may spread in a way that is unmanageable – we also know this happens. Given this, however good the care, it may not be possible to guarantee me the pain-free death I hope for. I’ve heard people in this debate argue that suffering is a part of life and as a psychotherapist I wholeheartedly agree, but I can assure you that my diagnosis and death brings enough suffering – intolerable physical pain would be a cruel addition. I do not want to die in uncontrolled pain or live the time I have left in fear of it. Also, as a psychotherapist, I know all too well the catastrophic impact of trauma. Trauma and suffering are very different things. For my already grieving family to have to bear the burden of witnessing my uncontrolled pain at the end of life will be a cruelty with lasting repercussions. I am enormously proud of my children and the contributions they are already making to society. I believe it is an act of love as a mother, wife and daughter to be able to help my family prepare for the inevitable existential sorrow of my death, but to protect them from being haunted by the memory of my physical agony, which may have devastating repercussions on their capacity to function well as active citizens. I believe I should have the right to autonomy over my own unavoidable and potentially difficult death. If palliative care is unable to facilitate peace and dignity and freedom from pain, this compassionate act means I will be able to choose a death that does, for both me and my family. But glad as I am to have been able to contribute, the main effect of the evening has been to make it more clear to me than ever why I support this bill. All those harrowing stories showed me unequivocably that the current law is simply not working. Families are being forced to have experiences that are not acceptable for humans to endure in a civilised and compassionate society. Here’s what I’m clear about. There are some experiences that even the best palliative care cannot provide relief for. There are no current laws supporting safeguarding or coercion at the end of life. This means people are taking their own lives in dangerous circumstances, or enduring the most horrendous and inhumane agonies because there is no alternative and conversations about options are not possible. This bill will mean it is possible to offer specific end-of-life safeguarding and allow full and compassionate conversations about death to take place. Coercion is already happening. People are not suddenly going to ‘want Granny’s money’ (as I’m so tired of hearing about) just because there is an assisted dying law – those people want it anyway. But coercion thrives where conversations are not possible and silence reigns, and the current law means there is no mechanism for recognising or dealing with it. My work in sexual and domestic violence showed me that recognition and action on coercive control improved when it was enshrined in law – people began to know what it was, how to see it, and took it seriously. The law had to be kept. This bill will be the first bill making coercion towards death illegal – the only way legally of preventing it and punishing it. It will require professionals to be trained to recognise signs of coercion, which currently rarely happens. It will mean it has to be prosecuted – there is nothing to prosecute for, as things stand.This is a holistic approach to death. No one on the side of assisted dying is arguing for either assisted death or palliative care. This is a totally false dichotomy. Instead, there is a compassionate recognition of where the capacity of even the best palliative care ends, and that another option needs to be possible as people are dying in unbearable agony. We want both assisted dying and excellent palliative care to be available.Evidence from other countries shows that an introduction of assisted dying has improved the resourcing of palliative care as it increases awareness of and attention to the complexity of death generally. I’m certain that if moves are made to improve palliative care in England now it will be as a result of the conversations raised by this bill. Evidence also shows that few people choose assisted death where it is available – even many who have begun the process change their minds. No one can be forced into it with this legislation. But those who need it, really need it. This is not a question of either assisted dying or disabled rights. Both must be fought for (and Kim Leadbeater is up for the task). This bill is for terminally ill adults with less than six months to live only. Assisted dying can facilitate peaceful and loving deaths that are right for the person and their families. We all deserve that. This is a moral and humanitarian argument, not an economic one. It is about what is right in a compassionate and humane society. It is impossible to measure the cost of these horrendous deaths in terms of the ongoing impact on families. So many of the opposition arguments are not against this bill, but one that doesn’t exist yet and for which there is no intention. There is no intention for there to be a slippery slope – and even if that changed it would again have to go through parliament. This bill will be the most rigorous and robust it can be – the most rigorous on safeguarding and coercion anywhere in the world. On Friday MPs need to vote on this bill and this bill only. You can read it here: https://commonslibrary.parliament.uk/research-briefings/cbp-10123/The vote on Friday will not automatically become law. If it passes there will be a period of weeks for amendments based on the debate, and then quite likely another two years before it becomes law. And that will offer plenty of time to develop working practices to accommodate it – there are clear models to base this on. If it doesn’t pass, it will likely be 10 years before it comes before parliament again. Many more families will endure horrific trauma in that time. This would be a tragedy. I have no idea how people with a shred of empathy could hear stories like I have heard tonight and think that leaving the law as it stands is a good option. Many of us are lucky enough not to have been touched personally by these horrors. None of us can guarantee we will never be with the current law. We all deserve to die with dignity. This is now urgent. If you have been fortunate enough to have never been touched by a terrible death, please read the stories at https://www.dignityindying.org.uk/why-we-need-change/personal-stories/ to understand why it is so important that we grasp this opportunity for change. It could happen to any of us.And if you’re in England please email your MP, before Friday and ask them to support the bill, to ensure that the possibility of empathy and compassion for all becomes law.Oh, and Kim Leadbeater is a phenomenal woman who begins to restore my faith in MPs. Thank you.Till next timeHelen xxxFor Paola, with so much love.Thanks for reading My Heart in My Two Hands! Subscribe for free to receive new posts and support my work.