Helen Johnson went to Dignitas in Switzerland for an assisted suicide after deciding she could no longer cope with the agonising lung disease that was slowly killing her.
As she ended her life, her partner of 33 years James Howley was at her side.
On his return to Britain, 57-year-old James suffered the trauma of being
investigated by police for six months on suspicion of assisting a suicide.
He said: “The stress and worry was unbearable at times. I was at rock bottom. There were times when I thought I wouldn’t get through it.
“I was exhausted, fearing I would end up in jail – all for doing the right thing by the person I loved most in the world, so that she did not have to die an undignified and agonising death.”
College lecturer Helen, who died aged 59, was diagnosed with the lung disorder in 2004.
She was forced to retire in 2009 due to ill health, and as the condition began to slowly suffocate her she made the decision to contact Zurich-based society Dignitas in 2015.
James, who also was a lecturer, said: “Helen had reached a helpless situation. She was in pain and suffering every day…
“She said, ‘I’m not frightened of dying, but I am frightened about the way I die’.
“It became very clear to her there was only going to be one course of action…
“She was conscious of doing it on her own, all the research, the contact [with Dignitas], the payments.
“She had my support at every stage but said if I was uncomfortable with going she would consider going alone.
“We knew there could be a legal issue but there was no way I was ever going to let [her] be waved off at the door.”
By the time they travelled to Switzerland, Helen’s lung capacity was just 15%.
The couple boarded Le Shuttle train in their adapted car carrying Helen’s oxygen tanks and nebulisers keeping her alive.
They booked into a hotel to spend their final hours together before going to Dignitas.
James said: “It was a serene place… Each doctor and nurse who saw Helen asked her whether she was sure she was making the right decision.
“She was fitted with a cannula to administer the life-ending drugs… When the time came we said our goodbyes and she passed away incredibly peacefully.”
In a cruel twist, as Helen died in November 2016, thieves ransacked the couple’s home in West Bromwich, West Midlands.
Jewellery and Helen’s computer containing cherished photos were taken by the burglars who wrapped their haul in “the last bed sheet she slept in”.
A neighbour, not thinking of the implications, told police the couple had gone to Switzerland for Helen – who had lung disorder alpha-1 antitrypsin deficiency – to end her life.
Within hours of arriving home James was quizzed by officers.
He said: “Initially they were fine… The detectives said I had nothing to worry about. I told them I had a letter written by Helen outlining her decision and we had copies of all of her medical notes and letters between her GP and consultant. They just said they would be in touch.”
Two months later he was summoned to be interviewed under caution.
Assisting a suicide is punishable by up to 14 years in jail. It took detectives six months to get Helen’s medical records.
In June 2017, West Midlands police finally wrote to James to say the case was being dropped.
A force spokesman said: “The investigation was delayed because, despite West Midlands police requests for medical records, they were not made [available] until June last year.
“That month, it was decided that it did not meet the evidential threshold for prosecution and the investigation was discontinued.”
James is now campaigning alongside charity Dignity in Dying to overturn the UK’s ban on assisted dying.
He is also backing 68-year-old Noel Conway, a retired college lecturer from Shrewsbury, who has motor neurone disease and whose fight to legalise assisted suicide will be heard at the Court of Appeal this week.
James, who has spoken to others probed by officers, said: “A woman had her door kicked in by police who seized all her possessions when they found her husband went to Dignitas.”
He has also been in touch with Julie Smith, 48, also from West Bromwich, whose husband Paul was 57 when he died from cancer at home in September 2016.
Despite attending the same GP surgery as Helen, former engineer Paul was denied his medical notes by his doctor who said he could not provide the details for him to send to Dignitas on “ethical and legal grounds”.
Julie said: “Paul died in agony and without dignity weeks before Helen.
“My last memories of him were of him being frightened, in pain and heartbroken. No one should have to go through that, which is why we need a change in the law.”
The campaign is boosted today by Labour’s deputy leader Tom Watson, MP for West Bromwich East, who is backing a law change after hearing of the plight of the two couples.
In 2015, MPs voted against an assisted dying bill by 330 votes to 118.
Polls have shown a majority of the public and doctors are in favour of a restricted assisted dying law.
It costs on average £10,000 for a British patient to go to Dignitas.
Sarah Wootton, of Dignity in Dying, said it is wrong the patients’ loved ones can face long police probes.
She added: “Their compassionate act is treated as a crime, mementoes are kept as evidence and suspicion hangs over them at a desperately sad time.”
Labour’s Deputy Leader Tom Watson backs change – here’s what he says
Everyone deserves a dignified death. That means a lot of different things to a lot of different people.
For more and more Brits it has meant a peaceful death at the time of their choosing at Dignitas in Switzerland. Last year one Brit went there every eight days.
I recently met two of my constituents whose partners were suffering from terminal illnesses and wished to end their lives at Dignitas.
Their experiences couldn’t have been more different.
James Howley’s partner Helen was able to get the medical documents she needed to allow her the peaceful death she wanted.
But Julie Smith’s husband Paul could not access the medical letter required by the Swiss authorities because his doctor was concerned about falling foul of the law.
No doctor should be put in that position: having to choose between granting their dying patient’s wish or facing possible investigation.
What makes this story so strange is that Helen and Paul both attended the same GP surgery in West Bromwich.
Two people, facing similar challenges at the end of their lives, had totally different deaths – one dignified, one undignified and painful.
All because the law regarding helping patients go to Dignitas is a grey area.
It’s not often you have such a clear demonstration of a situation that is not working, unfair and devastating for those involved.
Should assisted suicide be legal?
500+ VOTES SO FAR
When this issue came to Parliament nearly three years ago MPs didn’t agree that the law should change.
I was among those not convinced by the arguments. Hearing James and Julie’s stories has changed my mind.
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