‘Our laws are cruel’ - Terminally ill father calls for change in rules over assisted dying
PUBLISHED: 19:00 14 July 2020 | UPDATED: 12:37 15 July 2020
A terminally ill man from Bury St Edmunds who has begun talks with Swiss clinic Dignitas to end his life is backing calls for an inquiry in the UK around the laws on assisted dying.
Barry Barker, aged 63, from Fornham St Martin, has motor neurone disease, a progressive and eventually fatal neurodegenerative disorder.
MPs from the All-Party Parliamentary Group (APG) on Choice at the End of Life are due to meet tomorrow to discuss and hear personal stories and expert international opinion regarding the impact of the blanket ban in the UK on assisted dying.
The issue is a controversial one, with strong opposition from religious and other groups on moral grounds and fears assisted death could be exploited for financial gain.
Mr Barker, said: “There will come a day, in the last few weeks of my life, when my suffering has become so great, that I will want the option to end my own life in a way I find acceptable.
“But, as it stands, I am denied any sort of control over my death. I am being forced to consider travelling to Dignitas, which means dying earlier than I might want, because of our cruel assisted dying laws.
“Legalising assisted dying would mean I can take each day as it comes, giving me back the power to make the decisions that are right for me and my family.”
Mr Barker, a national product manager for an agricultural business, is married with two grown-up children who led a full and active life, He enjoyed playing squash and amataeur dramatics.
But towards the end of last year he began to notice muscular tics.
He said: “At the time I was waiting for another operation so I actually didn’t go to see my doctor until just before Christmas.
“By that time these tics were pretty obvious. I played quite a lot of squash and I noticed that I was losing strength.
“So I got an appointment to see a neurologist in February this year and by that time I think both my wife and I had worked out what it probably was. Although we didn’t know what form of motor neurone disease it could be, we both realised there wasn’t many things that type of symptom was associated with.”
Mr Barker underwent tests in March and the confirmation came back that it was motor neurone disease.
He said: “The neurologist said you need to understand this is a life-limiting disease, which is a wonderful term for knowing that it’s going to get you whatever you do and that there is no cure for it. Any treatments are pretty minimally effective.”
Since diagnosis Mr Barker said he has already lost up to 90% of the use of his hands and arms.
“I can’t lift things. It takes two hands to lift a cup of tea. Anything that needs lifting above waist-height is very difficult. Dressing is difficult, eating is pretty tricky unless I can break all my mother’s rules about good manners and have my arms on the table, and it’s going to get progressively worse,” he said.
“I have probably got six months of being able to look after myself to some degree. I can just about manage to get myself dressed although a couple of things get a bit difficult. I can just about manage to shower myself, and that’s probably the most I’ve got. After that I’m going to need help to do everyday life.
“As someone who’s been a sportsman pretty much all my life, I’ve played tennis and squash ever since I was a small lad, not being able to physically do things is incredibly frustrating.
“Not being able to pick things up off the floor, not being able to hold a knife because your hands get tired...if I prepare the vegetables for dinner, which I can do if I take my time, I then can’t hold my knife and fork properly afterwards because my hands are so tired.”
The Choice at the End of Life APPG is not a formal legislative body but an informal group of members of both Houses to raise the issue and work for a change in the law. It is assisted in this by the prominent campaign group Dignity in Dying.
This has resulted in three attempts to have the law changed since 2013, but none have succeeded.
Speakers at the meeting on Wednesday will include Attorney General and former Health Minister in Victoria, Australia, Jill Hennessy MP, who was in charge of Victoria’s Voluntary Assisted Dying Bill, the first successful legislation on the subject to be passed in Australia, in 2017.
Also speaking will be Joy Munns, the daughter of Staffordshire woman Mavis Eccleston who was cleared of murder last year after helping her terminally ill husband to die.
High-profile supporters of the issue include actor Sir Patrick Stewart, chef and TV presenter Prue Leith, and author Ian McEwan.
Mr Barker said he believed chronically ill people should be given every support as they approached the end, but they should also have the choice to say ‘no more’.
“You have to have safeguards around people being of sound mind and to ensure they have not been pressurised into it. But to deny people the choice of how they want to end their life when they have no prognosis of getting better – I just think it’s a backwards step for a western world,” he said.
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“I absolutely do not want to end up at the stage of not being able to talk, to eat, or to move, knowing that there is no prospect of improvement or even having time to adjust to this new way of life – only relentless decline. To me, that is not living at all, but I know that is what awaits me because of this terminal illness.”
Rather than face such a prospect, Mr Barker said he had opened discussions with the Swiss clinic Dignitas, a Zurich clinic that has assisted more than 2,000 terminally and chronically ill people end their lives.
“With Dignitas I have done everything I need to do here. The next stage will be to arrange a visit to go and see them for the first assessment,” he said.
“In June this year I asked them to confirm what the procedures would be, and they say if you want to begin what they call Preparation for Self-Determined End of Life, I have to send a written formal request. That starts the process.
“I have done everything up to the point of telling them I want them to help me end my life. That’s as much as I can do at the moment. I would love an alternative, but at the moment we don’t have that in this country.”
What is motor neurone disease?
Motor neurone disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord telling the muscles what to do.
This leads the muscles to weaken, stiffen and waste. MND can also affect walking, talking, eating, drinking and breathing. Some people also experience changes to their thinking and behaviour, but it affects everyone differently.
There are a range of symptoms including muscle weakness, speech and communication problems, breathing problems and difficulty in swallowing.
The condition affects up to 5,000 adults in the UK at any one time and there is no cure.
Notable people to have died from the condition include the Hollywood actor David Niven and former Leeds United and England football manager Don Revie.
For more details about the condition go to the Motor Neurone Disease Association website.
What is the law on assisted dying?
Both euthanasia - the act of deliberately ending a person’s life to relieve suffering - and assisted suicide are illegal in England and Wales.
Assisted suicide is illegal under the terms of the Suicide Act 1961 and is punishable by up to 14 years’ imprisonment. However it is not a criminal act for a person to attempt to kill themselves.
It is legal for a person to travel to Dignitas for an assisted death. But assisting someone’s journey to somewhere like Dignitas, for example by accompanying them there or booking flights or hotels, could amount to an offence. A decision to prosecute would rest with the Crown Prosecution Service.
There is no legislation in Scotland concerning assisted suicide. In such cases the Crown Office and Procurator Fiscal Service decide on whether to prosecute.
The opposing view
Many groups are opposed to any change in UK law.
They include Care Not Killing, an alliance which brings together disability and human rights groups, healthcare providers, and faith-based bodies.
Its aims are to promote more and better palliative care, ensure existing laws against euthanasia and assisted suicide are not weakened or repealed, and influence the balance of public opinion against any further weakening of the law.
The British Medical Association, which represent doctors and medical students, has been formally opposed to physician-assisted dying since 2006 and supports the current legal framework which allows for compassionate and ethical care for dying patients.
Its policy is that ongoing improvements in palliative care allows patients to die with dignity and insists physician-assisted suicide, voluntary and non-voluntary euthanasia should not be made legal in the UK.
If euthanasia were to be legalised it would want to see “a clear demarcation” between those doctors prepared to assist and this who would not.
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