close
close

Association-anemone

Bite-sized brilliance in every update

“If assisted dying had been legal, I would have lost precious family time”
asane

“If assisted dying had been legal, I would have lost precious family time”

BBC A smiling Nik Ward looks towards his family, standing left, out of the shot. He has a beard and sits in a wheelchair with a breathing mask over his face.BBC

Nik Ward, 53, suffers from MND and now uses a wheelchair and ventilator

The question of whether terminally ill people should have the right to end their lives is dividing lawmakers as they consider a bill to legalize assisted dying.

If passed, the flagship bill would be offer this choice to those who expect to die within six months – provided their decision is approved by doctors.

They should be satisfied that the patient’s choice was made without pressure or coercion.

But the debate raised questions about how terminally ill people could be protected and coercion avoided – with criticism of the proposal coming from both Labor and Tory politicians.

BBC News spoke to two terminally ill people, Elise Burns, who supports assisted dying, and Nik Ward, who hopes the bill will not pass.

Nik has motor neurone disease and says he probably would have chosen assisted dying three years ago if it had been legal.

The 53-year-old has been told for the past five years that he is terminally ill and knows he could die tomorrow by choking on food or his own saliva.

“I prided myself on my health and fitness,” says Nik, who now uses a motorized wheelchair and a breathing machine.

“Twenty years ago, if you told me I’d be in a wheelchair, I’d be like, ‘No, dude, it’s okay. I’d rather go.”

Now Nik says his attitude towards life – and death – has changed and he is grateful to have seen his children grow up. His eldest daughter is engaged to be married.

Under the proposed law, Nik is concerned that other terminally ill people would choose an assisted death and miss out on the joys that longer life could bring – even if they are less physically capable.

The private members’ bill was brought forward by Labor MP Kim Leadbeater, but the deeply sensitive nature of the issue has divided politicians from all the major parties.

Prime Minister Sir Keir Starmer promised his party would be allowed to vote freely, with their conscience.

Many people living with terminal illnesses said the bill gives them hope that they may not have to experience a painful or prolonged death.

Elise Burns lives in constant pain from terminal breast cancer that has spread to her bones, lungs and liver. He was told he might only have two years to live.

Elise Burns, wearing a denim shirt and shoulder-length hair, walks into the camera.

Elise Burns, 50, lives in constant pain and wants the choice to end her life before it gets worse

The 50-year-old relies on two different forms of morphine and a high-strength co-codamol to manage the pain. Some days they “don’t touch the sides,” leaving her barely able to move.

The pain is worst in her thigh, where a metal rod was inserted after cancer rotted away her femur.

Elise says the pain will worsen as her body becomes more tolerant to the painkillers, making them less effective.

“I’m not afraid to die, but I’m afraid of an ugly death—a long, long, brutal, horrible death. That terrifies me.”

There has been particular concern among critics of the bill about how people who have been left vulnerable by a life-threatening illness will be protected.

Some believe that the existence of assisted dying legislation could create implicit pressure on terminally ill people – even if no one is actively trying to coerce them.

Nik describes this possibility as a “very subtle but very insistent background noise”.

He believes that people who feel like a burden to their loved ones might, for example, choose to “end their lives because they feel they should do it for the sake of their children.”

“The people are the most attentive, the most attentive – it’s the very people I’m worried about,” he adds.

Nik smiles at his family behind the camera as he sits in a motorized wheelchair with a breathing mask over his face

Nik worries that other terminally ill people will feel motivated to choose assisted dying if the bill passes

But Nik admits that although MND has robbed him of his active body, he does not suffer constant pain like Elise and other terminally ill people.

“I fully respect their position,” he says. “I live in a pretty privileged situation, in some ways.”

Elise disagrees that the bill would force people to end their lives prematurely, as that option would only be available to those with six months to live.

As a guarantee, the person’s request to die would have to be approved by two doctors and a judge.

Elise accepts that those opposed to the bill have questions about the effectiveness of these safety measures and the ethics of assisted dying.

“It’s such a complex issue and I don’t have all the answers. What I would say is that everyone should have the choice to do what they want with their body.”

Elise sits on a couch as she speaks to the camera while wearing a denim shirt.

Elise says she’ll probably be dead before the bill becomes law if it passes, but she hopes it could help others

Elise knows she will die soon, but says choosing when that happens would bring her comfort and peace.

She believes it is likely that if the bill passes, it will come too late to help her.

Instead, he plans to use the assisted dying service offered by the Swiss firm Dignitas.

She says their process requires a lot of paperwork beforehand and will cost her between £12,000 and £15,000.

She says she is lucky enough to afford the amount, but that the high prices involved are another reason the law should be changed – so that assisted dying is available to every terminally ill person who chooses it, not just those who i can allow it.

If the bill passes, Elise wants to be able to “be there to see it.”

“It’s going to help so many people,” she adds.

Banner logo for BBC Sounds

Moral Maze: Time to Allow Assisted Dying?

Michael Buerk hosts a live Radio 4 debate examining the moral and ethical dilemmas behind one of politics’ most profound issues, with guests Giles Fraser, Mona Siddiqui, Matthew Taylor and Inaya Folarin-Iman.