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Guest post: “I’m terminally ill and want to die on my own terms”
25

JuliaMumsnet · 23/06/2022 13:09

Jan and Sarah

Jan Butterworth and her daughter Sarah

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.

Guest post: “I’m terminally ill and want to die on my own terms”
OP's posts:
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Berry12 · 26/06/2022 17:10

This message has been removed as it was accidentally posted on the wrong thread.

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Snafubar · 26/06/2022 18:05

We've now removed this post as it was posted on the wrong thread.

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GuestPost · 26/06/2022 20:52

This message has been withdrawn at the poster's request

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TheLadyofShalott1 · 27/06/2022 03:56

I agree with you completely, and have believed that assisted dying should be legal for at least the last 35 years. Of course there need to be safeguards in place, but I am absolutely sure that this would happen.

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ILoveAllRainbowsx · 27/06/2022 04:08

I completely agree with you.

Thank you for fighting for this.

I want to be able to decide how and when I die.

If other people want to die in pain then that is up to them.

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KatBlair70 · 27/06/2022 12:07

It is so important to fight for what should be an individual choice.

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Mummyoflittledragon · 28/06/2022 09:20

Thank you for fighting this and all the very best of luck. I’ve contacted my MP and signed the petition. I have chronic pain amongst other things and don’t have the best quality of life. I could see myself wanting this at some time in the future.

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Imnotaslimjim · 28/06/2022 11:11

Thank you for fighting this. I entirely support assisted dying. I always have but my dad's experience last really brought it up for me. He received a terminal diagnosis in August and left us in November. His death was protracted and painful and no amount of pain relief helped him. He only found peace in the last 4 hours before death. He begged us repeatedly to bring it to an end for him. I really wish I could have done without repercussions

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ILoveAllRainbowsx · 28/06/2022 12:37

@Imnotaslimjim

That is so sad.

I remember reading a newspaper article about an MP who had recently changed his mind and was now if favour of assisted dying.

He said that the reason he changed his mind was that when his own father was dying, his father blamed him for his suffering as he had voted against AD.

It is a basic human right to be able to decide when and how you want to die.

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SarahJan · 29/06/2022 19:36

Thank you for your support Sarah x

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SarahJan · 29/06/2022 19:36

Thank you for your support
Sarah x

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BettyBooper · 29/06/2022 19:52

Thank you for raising this. I'm so sorry that you are in this situation.

My FIL (in California) chose to die via assisted death. He was able to die at home with us. We were able to be together as a family and it was honestly a positive experience. We knew it was what he wanted and we were able to make his ending days as good as they could be, with him being in control. We were able to say our goodbyes together. I am horrified at the idea that he would have been made to suffer horrendously when this was not his choice.

That he would not have had this option had he lived in the UK is a terrible thought. You have my full support and I will be writing to my MP.

Best wishes

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Frenchfancy · 29/06/2022 20:01

I completely agree.

We hear so often about our beloved pets and "it is time to let's them go" "you wouldn't want them to suffer" and yet we let our loved ones suffer. Why? The only argument I ever hear is that people might take advantage and get rid of Granny for the inheritance. So basically money.

It is inhumane to let people suffer.

If a change in law is too late for you could I recommend a hospice. They were amazing with my Dad in his final days and made sure he didn't suffer. I hope you find peace.

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Iamnotamermaid · 29/06/2022 20:10

Completely agree and this should have been put in place long ago. I want to see this as available to anyone who wants it. Jan, so sorry to hear about your illness and Sarah, thank you for perusing this. Petition signed.

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Lullab · 29/06/2022 20:21

I couldn't agree with you more. The thought of anyone suffering a painful and unbearable end is horrifying. I have signed the petition and will contact my MP. I hope this law is passed in time for your mum xx

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user1471453601 · 29/06/2022 20:43

Thank you for taking your precious time to fight for this. I've also signed your petition.

I'm not terminally ill, except that I'm old now, so nearer the end of my life than some.

What I am though, is of sound mind. My body, not so much. My life is becoming a burden to me. I can no longer do most of the things I enjoy doing. I have most of the aids available - chair lift, walker, mobility scooter - but getting around and socialising is getting more and more difficult.

Soon, the good stuff I enjoy will no longer be available to me. Then what? I should continue to "live" to keep others happy?

Like you, I've tried as far as I'm able, to live by the rules that make sense to me. Rules like, trying not to hurt others, wanting fairness for everyone, regardless of their differences from me.

Now I'm told I should refrain from dying until it suits others? I have experience of caring for someone who had little pleasure in life. I don't want that. I want to die when I feel their is nothing or little left for me.

I don't think that's unreasonable.

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brightspark2 · 30/06/2022 14:21

I’m a member of Humanists UK who are also fighting for this. I totally agree with you.

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blondiepigtails · 30/06/2022 14:33

My mother died of MND in 2020. She had a very late diagnosis due to lockdown. She was literally unable to move anything other than her eyes for the last few weeks. I have no idea if she was in pain or what she needed. It was awful. I couldn't wait for her to die and neither could my father. We all miss her desperately. I'm sure she would have welcomed the opportunity to choose the time of her death.

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DignityinDying · 30/06/2022 16:26

Thank you everyone for your support for the campaign to change the law on assisted dying.

Over 155,000 people have now signed our petition calling on the government to debate assisted dying, and it’s because of supporters like you we have secured this debate on Monday.

You can still make a huge difference to the debate by contacting your MP and urging them to attend on Monday. You can invite them by sending them one quick email now.

It’s time MPs listened to the British people. 84% of the public support the legalisation of assisted dying. Every day 17 people will die suffering even with excellent care – they need this choice. MPs must not ignore stories like Jan and Sarah’s. It’s time dying people are given choice and control over the end of their lives.

If you want to get in touch with Dignity in Dying to share your story or to find out what you can do to back law change, please email [email protected]

Best wishes,
Molly from Dignity in Dying

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DignityinDying · 30/06/2022 16:33

Dear @Imnotaslimjim ,

I’m so sorry to hear that your dad had such a painful death. That must have been horrible for your family. My condolences.

If you would feel comfortable sharing your story with Dignity in Dying, please feel free to email me at [email protected]

Best wishes,
Molly from Dignity in Dying

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DignityinDying · 30/06/2022 16:37

Dear @BettyBooper,

Thank you for sharing your experience. I am sorry to hear about your father-in-law's death. My condolences.

I am glad that you feel he had a peaceful death under California's assisted dying law and you were all able to say goodbye. We agree that terminally ill people in the UK should have that right too.

If you would feel comfortable sharing your experience with Dignity in Dying, please feel free to email me at [email protected]

Best wishes,
Molly from Dignity in Dying

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Hbh17 · 30/06/2022 16:38

Totally agree. It is completely barbaric that we are not allowed a choice about how and when we die. It should be regarded as a basic human right, and I find it astonishing that the state tells me that I cannot be helped to end MY own life. If any political party put an Assisted Suicide Bill in their manifesto, I would vote for them.

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DignityinDying · 30/06/2022 16:46

Dear @blondiepigtails,

I’m so sorry to hear about your mum. MND is such a cruel disease. My condolences.

If you would feel comfortable sharing your story with Dignity in Dying, please feel free to email me at [email protected]

Best wishes,
Molly from Dignity in Dying

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Rowlingfan · 30/06/2022 16:48

I stand with you. Thank you for taking on this challenge and my very best wishes to you.

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Merryweather80 · 30/06/2022 18:33

I agree with you wholeheartedly

Ive got around five good years left and want a choice. I’m in agonising pain now. It’s only going to get worse. It’s it’s not controlled now the future for me is not one I choose. I don’t want to turn into a knarled up grumpy woman who can’t do anything for herself.
I want to die before this when my family can see me with my dignity and determination in tact.

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