Assisted dying: Daughter says her mum who was 'trapped inside her own body' would have chosen assisted death if she could

Instead Zena, 52, spent her final days "trapped in her own body", unable to move or communicate, but still painfully aware of what was going on around her.

As MSPs prepare to vote on Tuesday, May 13, on whether to approve in principle a Bill to allow assisted dying, Stacey hopes this time the proposal will proceed to the next stage and eventually become law.

Two previous attempts to introduce similar legislation have failed to get past this "stage one" vote in the Scottish Parliament.

The current Bill would allow people at an advanced stage of a terminal illness to request help to end their life. Safeguards would include independent assessments by two doctors and a 14-day cooling off period.

Stacey Young with her mum on her wedding day - Zena died 10 weeks later. | supplied

Stacey says that with her mother's type of cancer, symptoms often only start to show when it is already well established. "The statistics show the outlook is usually pretty grim. Upon diagnosis she was told it was terminal and it was deemed inoperable from day one, so that as quite a shock. All that was offered from the get-go was palliative care and that was discussed straight away."

Zena was told she had about four months to live if she had no treatment and just a few months more if she had palliative chemotherapy.

"Being the person she was - very strong willed and willing to battle it to the end and stay as long as possible - she opted for the palliative chemo because she was definitely not one for taking things lying down."

Stacey brought forward her wedding to make sure her mother could be there. And she treasures pictures of the happy day.

Scottish Liberal Democrat MSP Liam McArthur published his Assisted Dying for Terminally Ill Adults (Scotland) Bill in March this year (Picture: Jeff J Mitchell/Getty Images)

"She was really quite ill by then and she died 10 weeks later. I believe she held on to see me get married, I think put all her strength into holding on for that - and it was great day, she had an absolute blast and that made me happy."

Zena was looked after at home by her husband David and the family as well as community nurses until the last week or so of her life, when she went into East Lothian Community Hospital in Haddington, where she had worked as a cook and David is a porter.

"She lived in Haddington all her days," says Stacey. "She was very well known in the community and very well loved by a lot of people, always known for her happy disposition and her laughter. People said she was quite infectious with her laugh and her sense of humour and her outlook on life.

"She just loved life, she was a big character, a lot of people were very fond of her and had known her a long time. She was a cook in the NHS for 30 years and Dad has been a porter for about 25."

Stacey says her mother wanted to be in the Haddington hospital because she would know the people looking after her.

"That gave her some comfort, but unfortunately it doesn't take away the suffering.

"At the end she went downhill very quickly. She received fantastic palliative care - that can make people as comfortable as possible, and give them pain relief, but it can only go so far. So although she received the utmost care and attention, it did not take away her suffering.

"I think a lot of people don't take into consideration the emotional and mental suffering of the person.

"Essentially my mum starved to death, she had multiple blood clots in her lungs which led to her gurgling in her own fluids, she had difficulty breathing, she was completely skeletal in appearance, she was literally unrecognisable from how she was before.

"So seeing this strong-willed, bubbly woman who just loved life being reduced to that was pretty heartbreaking.

“But it was worse when she was effectively trapped in her own body for six days - unable to move, talk or communicate at all but she remained conscious.

"On the day she passed, maybe an hour before she went, we played some of her favourite songs - my mum absolutely loved music. One of them was a favourite of her and my dad's - and that made her cry. So she could not physically move or speak or anything, but that was when we realised that her mind was sill very much there.

“That devastated us as a family because we knew then that she had been trapped in her body the whole time, suffering, and aware of everything that was going on. It was really traumatic for everyone.

"We just wished she could have had more comfort and dignity in how she went and had that choice of when she went.”

Stacey says the family all agrees that assisted dying would have been a good option - and she believes her mother would have welcomed it too.

"A couple of weeks before she passed, she said to both my dad and me that she was ready, she had made peace with it, she was tired, she was exhausted by the fight, she was in a lot of pain and ready to go. She wanted to go. I think she did believe she might just slip away in her sleep, but unfortunately that was not the case.

“I know that how she went at the end she would have absolutely hated. Rather than going through that level of suffering she would absolutely have opted for an assisted death because she would still have been able to communicate and say her goodbyes properly, able to have a peaceful and dignified end, because it was so undignified. I believe that is something that would have not only given us comfort but her too because we were all robbed of that proper goodbye.”

Stacey says she and her dad have suffered quite badly from Post Traumatic Stress Disorder symptoms. "We've had flashbacks and nightmares of how my mum was - just absolutely awful. it's less frequent now, but it's still there in the back of my head.

“Obviously I try to remember her how she was because she was very fun-loving and a big character. To see her reduced to that was just awful.

“My mum would have hated every single second of what had become of her. She just wanted to go, She wasn't scared of dying any more, she was scared of what was in front of her and she could feel herself deteriorating quite rapidly and she was fearful of that.

"It was very much ‘I'm done, I am tired, I have done everything I can, I have fought and that's me, I want to go, I'm in too much pain'."

Stacey says she has always supported the principle of assisted dying. "I believe people should have that choice and dignity at the end of life and we should have that choice of how we leave this earth.

"My experience and my family's experience of what happened to mum really showed me the reality of a bad death and it hit home that this is happening to a lot of terminally ill people."

Supporters of the Bill say polls show that about two-thirds of Scots support assisted dying. And Liam McArthur, the MSP behind the Bill, is optimistic that it will be backed by a majority in the parliament.

Stacey says: "The last two times it hasn't got past stage one. I'm hoping it's third time lucky. A lot has changed since the last vote, which was 10 years ago. I think public opinion has changed and that will sway the result.

"I'm just holding the hope there's going to be change and choice and dignity for people"