What is Dignity in Dying? Assisted suicide campaign group linked to the Noel Conway right to die case
DIGNITY in Dying made headlines last year because of its links to the Charlie Gard case and Noel Conway's fight to change the law on assisted suicide.
The debate around euthanasia, withdrawing life support and assisted dying in the UK is a controversial and complicated one that draws in religion, ethics and the law. Here's what you need to know.
What is Dignity in Dying?
The Campaign for Dignity in Dying is charity that believes the UK should have a law that allows dying people with six months or less to live the option to control their death.
Assisted suicide is deliberately helping or encouraging someone to take their own life, for example, by providing them with medicine to do so.
According to the website: "Dying people are not suicidal – they don’t want to die but they do not have the choice to live.
"When death is inevitable, suffering should not be. Along with good care, dying people deserve the choice to control the timing and manner of their death.
"We do not support a law that would allow anyone to end another’s life. This is an important protection to ensure that an assisted death is completely voluntary."
It has a sister organisation called Compassion in Dying that works to inform and empower people to exercise their rights and choices around end-of-life care.
What is the the law in the UK?
Assisted suicide is illegal in the UK and can result in 14 years in jail. The only exception is "passive euthanasia", which is where treatment that might extend someone's life is withdrawn - such as a life machine being turned off.
The only alternatives for terminally ill patients in the UK are hospice care or refusing treatment, which mentally capable patients have the right to do.
As a result, some terminally ill people decide to travel abroad to die. In Switzerland, where assisted suicide is legal (but euthanasia is not), you do not have to be a Swiss citizen to use a clinic.
However, it is not cheap - assisted suicide non-profit Dignitas charges patients £3,380 for its services.
What is Dignity in Dying trying to achieve?
The organisation is calling for a law similar to one in place in Oregon, California, Washington and other US states.
The law allows terminally ill adults with less than six months to live to get a doctor’s prescription for a lethal dose of “aid-in-dying” drugs.
Under that law a patient seeking lethal drugs make three formal requests to their doctor: one written and two of them orally delivered and spaced at least 15 days apart.
The law also requires informed consent and excludes children.
How was Dignity in Dying linked to the Charlie Gard case?
Doctors at Great Ormond Street Hospital had said baby Charlie, who had mitochondrial DNA depletion syndrome, should be allowed to die in dignity and applied for permission to have his ventilator switched off.
But his parents Connie and Chris fought for him to have a chance at treatment – raising more than £1.3 million to pay for pioneering treatment in the USA.
At the time, his parents were reported to be furious that the lawyer appointed to represent their son heads a charity which backs assisted dying.
Victoria Butler-Cole, who represented baby Charlie, is chair of trustees at Compassion in Dying, a sister company to Dignity in Dying.
A source close to Charlie’s parents Connie Yates and Chris Gard said at the time: “The family find it astonishing.
“The implication is obvious. It looks like a profound conflict of interest.”
Compassion in Dying said there was no conflict of interest between Mrs Butler-Cole’s role in court and her view that adults with full mental capacity should be allowed to plan their own death.
A charity spokesman said: “There are clear differences between this case, the work of Dignity in Dying and the work of Compassion in Dying.
"The Charlie Gard case is about making decisions in the best interests of a seriously ill child.”
The tragic baby passed away in July 2017, after his parents lost their legal battle.
Who is Noel Conway?
Mr Conway, 68, from Shrewsbury, was diagnosed with motor neurone disease in November 2014.
He has fought for permission to bring a judicial review which could result in terminally ill adults making their own decisions about ending their lives, if they meet a strict criteria.
Dignity in Dying has supported his case, and he is a member of the organisation.
His lawyers say that when he has less than six months to live and retains the mental capacity to make the decision, he wants to be able to be assisted with suicide.
Before his illness, Mr Conway, who is married with a son, daughter, stepson and grandchild, enjoyed hiking, cycling and travelling.
He is now uses a wheelchair and ventilation equipment.