Rachel Wilkinson has the words “do not resuscitate” tattooed across her chest.
Though she also keeps instructions for first responders in her handbag, in case her heart gives up “in the middle of the street”, she’s worried people might not see them in time.
Because Wilkinson is very clear about what she wants to happen when she dies: ideally, she plans to take her own life.
The 39-year-old, who suffers from an auto-immune disease, is a member of Dignitas, a Swiss organisation which assists people who wish to end their lives at a time of their choosing. When her multiple illnesses become too much to bear, she plans to use the service.
But Switzerland is a long way to travel, and as a woman who has been gradually left housebound by numerous health issues, Wilkinson has been excited to learn that politicians much closer to home are about to consider legalising assisted dying.
In what could signal a major policy shift within the British Isles, Guernsey is proposing to legalise the practice, modelling laws in Oregon in the US and Victoria in Australia. If the bill is approved by MPs in May, it could lead to allowing residents to take control of the end of their lives, making the Channel Island the first place in the British Isles to do so.
Guernsey’s Chief Minister Gavin St Pier is backing the bill. He said: “I think there is pretty strong evidence that there is public support for this, but of course that doesn’t mean it translates into a parliamentary majority. I suspect it will be a relatively close vote but I wouldn’t like to call it either way at this point.”
His father’s death from cardiovascular disease nine years ago has shaped his views on the divisive issue. “The end of his life was relatively short. He discharged himself from hospital when it was obvious his condition was terminal because he wanted to go home. He was under the care of a palliative care team, who were able to ensure his death was a pain free one, but it wasn’t a comfortable death for him.
“More importantly, it wasn’t a death he would have chosen for himself. He very clearly wanted to be in control and of course he wasn’t.”
For the vote in May, MPs are being asked to consider if assisted dying should be open to residents of the island, not visitors – a restriction common in most other countries that allow it – such as Oregon and Victoria, with the exception of Switzerland.
“Understandably people have challenged that, particularly from outside the island, saying if it’s a matter of compassion then why would you deny that compassion to those from outside the island?” St Pier says.
“I understand that argument. Our primary objective is to look after the interests of our own community. But it is a matter that would require further consideration,” he adds.
Though Wilkinson herself would not be eligible for the service, she says she would welcome the change in policy, and hopes it would be a sign things could soon change in the UK too. “Everyone has their right to have their own choice in the matter. It’s really important that people are aware of what choices are available,” she says.
“With Guernsey, it’s not as if I’d be able to just pop over there, you have to live there. Unless I decide to move!”
Though she is not terminally ill, Wilkinson, whose husband David was killed serving in Afghanistan in 2007, has been in near constant pain for many years. She takes more than 50 pills per day, had problems with her heart, kidneys and joints, and had a toe amputated last year.
She is facing the amputation of three further toes and her feet are so ulcerated they appear blue. She started a new painkiller six weeks ago which makes her dizzy and vomit when she tries to stand up.
“By becoming a member of Dignitas last year, I’ve ensured that if I ever get to the point of wanting to go, then it’s available,” the former waitress says.
“But obviously I’m hoping that by the time it does, I’ll have the option to end my life here in this country. I don’t have a desire to die, but if I’m going to die I want to die on my terms.”
According to data collected by the campaign group Dignity in Dying, 300 suicides in England each year involve a person with a terminal illness. It says that 82% of the British public support the option of assisted dying for terminally ill adults, and have collected date that suggests 44% of people would break the law to help a loved one die, risking up to 14 years in prison.
With Dignitas, an individual does not have to be terminally ill to become accepted as a member. Instead, they may suffer an “unendurable incapacitating disability, and/or unbearable and uncontrollable pain.” Members must be of sound judgement and possesses a minimum level of physical mobility in order to self-administer the fatal drug.
In Britain, Dignity in Dying is fighting for a change in the law to allow terminally ill, mentally competent adults with six months or less to live the option of an assisted death – the same terms as the Guernsey bill.
“We should applaud the people of Guernsey for beginning this discussion, and must hope that their positive example is followed here in the UK”
- Sarah Wootton, Dignity In Dying
The Guernsey bill is similar to a private members bill in the sense that it is a mechanism by which individual members can ask parliament to make a policy decision, not a legislative one. This means that detailed legislation would need to come back for approval following an 18 month consultation period to implement the policy decision.
Dignity in Dying’s chief executive, Sarah Wootton says politicians on the island are “bravely taking a step towards legalising assisted dying”.
“In 2015, MPs in the UK decided to ignore the wishes of their constituents and listen to scaremongers, whose arguments are repeatedly proved wrong as more and more countries decide to give dying people a say over how and when they die.
“From California to Canada, Vermont to Victoria, politicians have decided to listen to the wishes of dying people and given them a say over how and when they die. What we’ve seen there has been remarkable: choice for dying people, protection for vulnerable people, honest and open conversations between doctors and their patients.
“We should applaud the people of Guernsey for beginning this discussion and must hope that their positive, progressive example is followed here.”
But Dr Peter Saunders, the campaign director of the Care Not Killing Alliance, disagrees. He said it is disappointing to see another attempt to legalise suicide.
“It has been repeatedly rejected by parliaments across the UK and by successive judges, most recently in 2015 when MPs overwhelmingly rejected legalising assisted suicide by 330 votes to 118,” he said.
“During the debate Parliamentarians acknowledged that there is no safe system of assisted suicide and euthanasia anywhere in the world, that changing the law would send out a negative message about those who are terminally ill, disabled or old – and might pressure some into ending their lives because they feel that they have become either a financial or care burden.
“The current law exists to protect those who are sick, elderly, depressed, or disabled from feeling obliged to end their lives. It does not need changing.”
Noel Conway
In early May, Noel Conway, who suffers from a form of motor neurone disease, will continue his legal battle in the British courts for the right to have the choice of an assisted death when he is in the final six months of his life.
Conway suffers from amyotrophic lateral sclerosis (ALS), a condition which is incurable and terminal. In January he was granted permission to appeal to the High Court’s earlier decision and will now proceed to the Court of Appeal.
Though Conway’s case was thrown out in October 2017, the judgement confirmed that the courts have the authority to make a declaration of incompatibility between the 1961 Suicide Act (which criminalised assisting someone to die) and human rights legislation.
Assisted suicide is illegal under the terms of the Act and is punishable by up to 14 years in prison, however if a person kills themselves, that is not a criminal act.
Dignity in Dying is supporting Conway’s bid. “Like so many dying people he wants to know that, if his suffering becomes unbearable in his last days and weeks of life, he can choose to die on his own terms,” Wootton says.
Palliative care nurse Gay Lee agrees. The 69-year-old has worked in the industry for nearly 18 years and says “the UK needs assisted dying. The laws need to be changed but I don’t think it will affect huge numbers of people.
“The general feeling is that about 1% of terminally ill people might use the service and of course the evidence from other countries is that people are often just happy to have the medication to use if they wish. What they want is the control to make the decision themselves. When they have that, they don’t always feel the need to actually use it. That’s why the Guernsey bill is so important,” she says.
“My patients quite often talk about it and sometimes their relatives ask me, ‘can’t you help them?’ When people say that, it doesn’t necessarily mean that if they were actually offered the choice they would take it,” she adds.
British Citizens Using Dignitas
The first Briton to use the service was in 2002. As of the end of 2017, 391 Brits have died at the facility in Switzerland.
Based on averages, Dignitas says one Briton every eight days arrives to end their lives.
As of the end of 2017, Dignitas had 1,315 British members, however anyone can become a paying member if even they aren’t planning an assisted death.
Doctors Divided
In Britain, besides being illegal, assisted dying is a thorny issue within the medical profession: the Royal College of Nursing holds a neutral position on the matter, while a recent survey reported by the British Medical Journal found that of 733 medics, 55% of them would see a change in the law to allow it.
Lee says: “Nowadays people seem to be much more prepared to talk about it and particularly among nurses, views are shifting. I think it’s slightly more difficult for doctors because there are a lot of palliative care doctors who are very much against it and it’s often mixed with religious views.”
Lee is also a member of Dignity in Dying and the Health Professionals For Assisted Dying network, and believes the Guernsey bill should be limited to those who are terminally ill if it is passed, unlike the terms of Dignitas.
However the significance of the Guernsey vote should not be underestimated, she says. “This would be a good thing for Guernsey, it would be a good thing for everywhere. It’s not about saying people should die, it’s about giving people choice.”
Useful websites and helplines
Samaritans offers a listening service which is open 24 hours a day, on 116 123 UK and Ireland (this number is FREE to call and will not appear on your phone bill).
You can call Mind, open Monday to Friday, 9am-6pm on 0300 123 3393.
Get Connected is a free advice service for people under 25. Call 0808 808 4994 or email: help@getconnected.org.uk
HopeLine runs a confidential advice helpline if you are a young person at risk of suicide or are worried about a young person at risk of suicide. Monday-Friday 10-5pm and 7pm-10pm. Weekends 2pm-5pm on 0800 068 41 41.
Maytree is a sanctuary for the suicidal in north London in a non-medical setting. For help or to enquire about a stay, call 020 7263 7070.