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‘End-of-life care cannot be truly person-centred until assisted dying is legalised’

Compassion in Dying | Dignity in Dying

5 min read Partner content

The CEO of Dignity in Dying and Compassion in Dying, Sarah Wootton tells PoliticsHome why she thinks assisted dying will become just one of the choices available at the end of life.

Today, a terminally ill man suffering from motor neurone disease will seek to take a High Court challenge in order to be allowed to die without pain and suffering.

Diagnosed with the disease in 2014, Noel Conway is seeking a prescription of a lethal dose in a bid to avoid suffering at the very end of his life. In life, he fears he will watch his muscles weaken to the point of paralysis. And when he dies, he fears it will be by suffocation or choking.

The challenge is the first of its kind since MPs rejected a change in 2015, despite 82% of Britons supporting assisted dying for terminally ill adults.

If it is successful, the case will be taken through the lower courts, all the way to the Supreme Court. There, judges could make a declaration of incompatibility between the current law and the Human Rights Act, with Parliament asked to address the conflict and revise the law.

Sarah Wootton, the CEO of Dignity in Dying, a not-for-profit organisation supporting Mr Conway’s bid (and its sister charity, Compassion in Dying which is not involved in the assisted dying campaign ) told PoliticsHome how important the case is.

“Truly person-centred care means respecting a person’s wishes and empowering people to take control of how they are cared for. Under the current law people have the legal right to plan ahead for their future care, refuse treatments and appoint other people to make decisions on their behalf. Denying dying people the right to hasten their death when their suffering becomes unendurable is the antithesis of these rights. End-of-life care cannot be truly person-centred until assisted dying is legalised.”

For Ms Wootton, the legalisation of assisted dying would build on recent changes to the way society views death and dying.

“Person-centred care has been perhaps the biggest driving force in healthcare in the past two decades. Dignity in Dying’s sister charity, Compassion in Dying, is supporting more and more people to exercise their rights under the current law. We know that this results in better care outcomes and reduced emergency hospital admissions at the end of life. Assisted dying would sit alongside these things as just one of the choices people have available at the end of life.”

This is not an issue that is going to go away anytime soon. As the population becomes increasingly older and medicine continues to advance, people are facing drawn-out deaths.

“People aren't dying in the same way they were 50, or even 10 years ago. People don't want to have the deaths their parents had, they want to take control at the end of life”, Ms Wootton warned.

“Death is a part of life. It should be prepared for, like any other phase, and it has to be about the individual and their wishes” she said.

While we will have to await the outcome of Mr Conway’s case, Ms Wootton believes the legalisation of assisted dying is inevitable.

“It's one of the great libertarian causes, on a par with abolition of slavery, votes for women and the legalisation of homosexuality. These are all issues that prevailed in the end. They often took decades, but ultimately it was about the rights of individuals versus a stubborn state and discriminatory legal frameworks.”

At the moment, one person every eight days is travelling from this country to Switzerland in order to end their life. For the dying Britons who don't have the ability to make the voyage, many are ending their own lives at home or seeking help from a doctor willing to break the law, said Ms Wootton.

“The legal situation here is absolutely untenable, dying people are being forced to take matters into their own hands without any of the necessary safeguards. The law is completely failing.”

The UK is not the only country grappling with the issue, but if current overseas trends are any indication, Parliament will soon find itself on the back foot of a growing global movement toward decriminalisation.

“The US, Canada and Australia are very well advanced in changing their outdated approach to assisted dying. The law in Canada changed following a legal case very similar to Noel’s. 

“The evidence from these jurisdictions that have changed the law is that a small number of dying people would have an assisted death  but a huge number would take great comfort from knowing the option was there for them.”

As well as the choice this legalisation would allow people, there is another plus: people would be able to have honest conversations.

“At the moment, there's a sense that wanting an assisted death, because it's illegal, is a shameful secret.

“That means people can't talk openly about their hopes and fears around death and dying. Bringing assisted dying into the open would encourage those conversations and lead to a much needed culture change, for dying people, for clinicians and for society as a whole.”

With these benefits, and a large majority of Britons supporting a change in law, why has it not already been altered?

Part of the reason, she explained, is that the minority who oppose to assisted dying are “vociferous”, believing that assisted dying is morally wrong or could lead to harm. 

However, the CEO explained she believes their concerns are unwarranted.

“The evidence shows that in fact, legalising assisted dying has the complete opposite effect.”

She explained that there has been no abuse of assisted dying laws overseas and that legislation is much safer that the status quo. Instead of terminally ill people having to travel to Switzerland, or their death being shrouded in mystery, law change would allow choice and transparency.

“Which,” Ms Wootton added, “would the best protection against coercion, pressure or any of the other unproven fears that have so far stood in the way of change.”