By Rebecca Maer
Emotional stories of Eastbourne people’s experience of seeing loved ones at the end of their lives unfolded last night in an online discussion about assisted dying.
One woman who was in favour of allowing it said: “I would not want anybody to have to go through what my husband went through and what we as a family witnessed.”
A man who is against a change in law said: “If we start to agree with someone that they are better off dead, we start to put a conditional value on human life.”
The accounts emerged in an online conversation hosted by Eastbourne Liberal Democrat MP Josh Babarinde and moderated by Eastbourne Reporter.
He said he had received hundreds of emails on the subject from constituents and wanted to listen to views on both sides of the debate.
There is a free vote on Friday in which MPs will decide whether to take forward a controversial Bill which could lead to a change in the law on assisted dying.
More than 100 people joined the call to hear from a law professor, supporters of the ‘Care Not Killing’ and ‘Dying In Dignity’ campaigns, and to hear the stories of people who have seen loved ones at the end of their lives.
What is the MP’s current view?
Mr Babarinde told a personal story of the death of his uncle from Stage 4 cancer in hospital in London at the age of 60. When he visited his uncle, he was in a lot of pain and “a shadow of his former self”.
The MP said: “I could tell how undignified this experience was for him and because of how I should see him in that state.
“I thought to myself how difficult and how cruel life is, particularly punishing someone in that way. I don’t think my uncle would ever have opted for assisted dying were it permitted at the time.
“But morally, I think people should be given that choice with the right safeguards in place.” His uncle died a few hours after his visit.
People in favour
(Names have been changed throughout)
:: Selina spoke about when her husband was on a clinical trial in Belgium for a rare cancer and was offered the option of assisted dying as part of the general conversation.
“It wasn’t an option he wanted to follow but it really struck me at the time it was fabulous that he would have been able to make that decision: it wasn’t about pressure, or cost, and it seemed to be something valuable in that stage of cancer,” she said.
She disclosed she also has a very rare cancer which limits her life expectancy at the age of 51. “It would make my experience of cancer much more bearable if I knew that I would have control over the manner and nature of my death.
“However good the palliative care is, the dignity is very important to me. It would give me more peace of mind now.”
As a lawyer, she said she had read the Bill and was happy that the safeguards in place were as safe as they could be.
:: Deborah spoke of her husband’s death from a brain tumour after a decline which meant he could not speak and suffered constant seizures.
“We both believed in the sanctity of life but life changed completely and he begged doctors to end his life. It is something I will never forget.
“I didn’t want the children to see him like this: our lives now would be very different if he had been allowed that decision. I would not want anybody to have to go through what we, as a family, witnessed.”
:: Alan spoke of his mother, 83, who has a rare form of Alzheimer’s which has left her mind largely unaffected but she has lost the use of her hands and needs hoists to use the bathroom.
“She has expressed the wish to others: ‘I don’t want to be here any more’. She is terrified of not being able to express herself, of having a fully functioning mind in a failing body,” he said.
“I think she is afraid her death could be in the middle of the night with no one with her – she would want to be able to say goodbye.”
People against
:: Elizabeth spoke of her brain-damaged sister who has been in a care home for a long time, under the protection of the court. The cost of her care is £100,000 a year.
“My fear is this Bill will endanger her life because she is costing the system so much. There is a chance they would decide her life is not worth living because of that cost,” she said.
“She has no ability to say what she does or doesn’t want. She has some quality of life and I believe she has the right to live, not die.
“People will think they can get rid of people with incurable conditions ,but who knows how long your life expectancy will be?”
:: Graham, a Church of England minister, said the UK had always stood against suicide, giving the work of the Beachy Head Chaplaincy as an example. It comprises a team of volunteers who patrol the area and listen to people in crisis.
“The law teaches a culture of what is valuable and puts a value on human life. If we start to agree with someone that they’re better off dead, we start to put a conditional value on human life,” he said.
“We have an opportunity to not open that door. Humans have a sanctity of life that transcends quality of life.”
:: James, a retired GP, voiced concern that any change in the law was “a slippery slope” to further measures.
He cited the original Abortion Act 1967 as an example. He said it had very strong safeguards but by the time he became a GP in 1980, it was ‘abortion on demand’ and was a form of contraception.
“I didn’t find one single person in all my years as a GP who ever got turned down for an abortion. The law was ignored. The slippery slope is very, very real,” he said.
“We are not just legislating for the current understandably awful scenarios: we are legislating for long term expectations.
“The other thing that is real is the pressure on ‘bed blockers’ at £100,000 year a cost. You will never legislate against unconscious coercion.”
What are MPs debating?
MPs will debate one of the stages of the proposed change in the law on Friday (29 November).
The Bill – the Terminally Ill Adults (End of Life) Bill – would make it legal for adults over the age of 18 in England and Wales who are terminally ill, with no more than six months to live, to be given help to end their own life.
The measure is subject to safeguards and protections, including needing the support of two independent doctors and a High Court judge. A doctor could prepare the approved substance, but the person themselves would have to take it.
What is the legal position?
A video by Emily Jackson, professor of law at the London School of Economics, was played in which she set out the current legal position and the proposed changes.
Prof Jackson said the debate is about amending the current law under which assisting a suicide is a criminal offence, punishable by up to 14 years in prison. It is not currently relevant whether or not the person has requested that assistance.
A change in the law would apply only to:
- Adults resident in England and Wales for at least 12 months
- Those with mental capacity
- Those with incurable conditions where their death is reasonably expected within six months
- Those with a clear, settled and informed wish to end their life
- Those who reach the decision voluntarily without any coercion and without pressure
The Bill also makes exerting coercion or pressure on someone to end their life a specific criminal offence for which the punishment is 14 years in prison.
People who meet all the criteria can make a request but it does not, importantly, create a right, said Prof Jackson.
Two doctors must assess the criteria are met and a third specialist may be consulted if deemed necessary. Doctors have the right to conscientiously object from being involved in such cases.
The High Court must then declare all the criteria are met and there is a 14-day reflection period, which could be shortened to 48 hours if death is imminent.
“So the bill is very restrictive: there are a whole load of requirements the patient must meet and then there are the procedural requirements of needing to satisfy two doctors separately and the High Court,” Prof Jackson said.
The campaign for voting ‘Yes’
Nikkan Woodhouse, campaign area co-ordinator for Dignity in Dying, said the moral framework relating to end-of-life care was created before medical advances which keep people alive for longer.
“People do suffer. We are all of the same view that everybody should have good palliative care and this should be part of that,” she said.
Ms Woodhouse gave the example of a man who died of a throat tumour which could not be eased by palliative care, so he died in some distress.
The campaign for voting ‘No’
Dr Cajetan Skowronski, geriatric and palliative care doctor practising in Eastbourne, spoke in support of the Care Not Killing campaign against a change in the law.
“The change that this would introduce into our NHS is that ending a patient’s life is a therapeutic option – it is a monumental shift. It opens the door to further changes down the road,” he said.
“My elderly and frail patients in Eastbourne often express the feeling that they are a burden: they always think of themselves before others.”
What happens on Friday?
The debate is the Second Reading of the bill so, even if MPs vote in favour, nothing comes into law. It means it will go onto the Committee Stage, when MPs examine the bill in detail.
Prof Jackson said there was a possibility with a ‘yes’ vote that the Government could make more time available for the bill due to its importance or even withdraw it to allow more time for further consultation.
Nothing will change on Friday; it is a vote on whether to take the bill forward and scrutinise it or not to take it any further.
Mr Babarinde praised the callers for the tone of the discussion.
“It shows how inclusive and understanding our town is with so much respect and sharing on both sides,” he said.
He said he would listen to the five-hour debate on Friday before deciding how to vote.
:: The conversation was moderated by former Sky News broadcaster Paul Bromley of the Eastbourne Reporter. He declined to take a fee for this event; a donation has instead been made to charity.
:: When life is difficult, Samaritans are here – day or night, 365 days a year. You can call them for free on 116 123, email them at jo@samaritans.org, or visit samaritans.org to find your nearest branch.
:: Main image: by National Cancer Institute on Unsplash
