On Monday 4th July, MPs will debate assisted dying. Jan Butterworth and her daughter Sarah, who are working with Dignity in Dying, have written for Mumsnet about why this debate is so important to them:
Jan speaks
Earlier this year I was diagnosed with terminal endometrial cancer and clear cell carcinoma. I know that I am going to die, I can feel pragmatic about that part, but I am terrified of how my death will be.
I want to have control over both my life and my death, but the only way I can truly achieve that is with the option of an assisted death, which is currently illegal in the UK.
Dying people are often patted on the head and assured that they will have peaceful and dignified deaths, but sadly I know from experience that this is very often not the case.
I don’t want to die in pain or be left bedbound, unable to manage basic needs independently or do any of the things I enjoy. Others might disagree and I respect that. Both they and I should have a choice about the kind of deaths we want, but under the current law I am denied mine.
My life has already changed dramatically since I was diagnosed. I enjoyed a rewarding career, first as a teacher of special needs children, then running a residential care home for the elderly and then finally I retrained to be an adult psychotherapist. I was fiercely independent, fit and able before my illness. I liked to make my own decisions about life and my future. Now those freedoms that are so important to me have been taken away and my options are limited.
I could take matters into my own hands. But how would I know what best to do and whether it would work? Could I survive and be left more ill or less able than I already am? If someone helped me, they would be liable to prosecution, meaning I would have to die alone.
An assisted death at Dignitas in Switzerland would cost me at least £10,000 and have to be done as secretly as possible to avoid incriminating anyone who decides to go with me. It would certainly mean going earlier than I might either need or want to make sure I was strong enough physically to go. And why should I have to do all that, incurring further stress, when I should have the choice to die with dignity, in the manner and at a time of my own choosing, peacefully at home?
I am going through palliative chemotherapy, which will not cure my cancer but will hopefully extend my life by a few months, but I don’t know for how long. I don’t want to spend the precious time I have left worrying about the circumstances of my death.
For me, having this choice would be like an insurance policy against suffering. It would be a calming influence on me and my children to know it’s there, whether or not I choose to take it. If I did choose it, I could go somewhere comfortable and drift off peacefully when I decide to, perhaps having a glass of wine in the garden, having said goodbye to my family, happy in the knowledge that both I, and they, have avoided distress or suffering in the last days of my life.
In under two weeks, the House of Commons will debate assisted dying. If you agree with the 84% of the public who believe we must give dying people like me more choice about their deaths, please make your voice heard. Over 150,000 people have signed the petition that made this debate happen. It has been more than two and half years since MPs last had the chance to debate this issue and you have the power to ensure yours stands up and represents your views. Write to your MP and urge them to put themselves in my shoes – would they want this choice?
Would you or your loved ones?
Sarah speaks
Birth and death are the only certainties we have in life; everything that happens in between is down to experience, chance and luck. I know the importance of a ‘good’ birth and transition to parenthood as I am a perinatal clinical psychologist, often working with women with a fear of childbirth, birth trauma and mental health difficulties. My focus is the beginning of life and making sure Mum feels safe, listened to and in control of her birth. We only become a new parent once and only have one chance to get it right. It’s about choice.
My mum was diagnosed with advanced cancer out of the blue in February 2022. Now my focus has been pulled to the other end of life; the part no one wants to focus on whilst they are well, but something that we will all have to experience. Again, there is only one chance to get it right and to have a ‘good death’ (YODO: you only die once).
What makes a ‘good death’ is different for all of us but most people say, like birth, they want to be pain-free with their loved ones around them.
It came as no surprise when my mum talked about assisted death. She likes to live by her own rules and decisions. Having an assisted dying law would mean dying people like her could control their own peaceful ending at home if their pain or distress felt too great.
Currently there is no real choice – you can plan to a degree, but inevitably you will die in whatever way that happens. Having more choice at the end of life would mean having options if needed. People transitioning into death should have the option of asking for medication that will allow them to die swiftly and peacefully, which they can use if they want or need to. A third of terminally ill people who are granted the prescription in Oregon, where assisted dying has been legal for 25 years, never actually use it. Just knowing it’s there is often enough reassurance.
I don’t want my mum to die. She is a wonderful mum to my brother and I, and an amazing grandmother to her four grandchildren. She is my best friend and whole support system.
The only thing that will make it bearable for me is that she has a good death; one she chose. I do not want to see her fearful and anxious. I want her to have a choice.
Please contact your MP and urge them to come along to the debate on 4th July (my mum’s 71st birthday), which will be an important step on the road to a more compassionate future. If not for my family, please, do it for your own.