As the Assisted Dying Bill is scrutinised in parliament, the debate over whether terminally ill people should have the right to die is heating up again. So, what could a right to die look like in the UK?
Campaigners have sought to legalise assisted death for some time but the Assisted Dying Bill (ADB) may be close to making it a reality. Introduced by Baroness Molly Meacher in May, the bill would allow for terminally ill, mentally competent adults in their final months of life to consent to end their lives.
Critics of the bill, and of assisted death and euthanasia, fear that such legislation threatens the right to life – enshrined under Article 2 of the Human Rights Act (HRA) – as well as disabled people’s right to freedom from discrimination. However, supporters believe that the Bill could protect people’s right to freedom from degrading and inhuman treatment, outlined in Article 3 of the HRA.
What Does The Assisted Dying Bill Propose?
The ADB has drawn attention, support and critique from many sides. In summary, the legislation proposes that two independent doctors and a High Court judge be required to approve any individual request for assisted death. To be permitted, individuals making the request must be over 18, terminally ill with six months or less to live and fully mentally competent.
“My Private Members’ Bill on assisted dying is modest in its scope and yet its potential to transform all our lives and deaths for the better is colossal,” said Baroness Meacher. She is also chair of Dignity In Dying, a campaigning group that advocates for people to be able to choose when they die, who is present and treatment options. “It would also provide invaluable peace of mind and control to countless more who may never avail themselves of this option but would be comforted by the simple fact of its existence. This bill is an insurance policy against intolerable suffering which benefits us all.”
If patients meet the guidelines, the ADB would allow them to secure a prescription for life-ending treatment, which they can take where and when they choose. The ADB is reminiscent of legislation in Oregon, USA, which has been in use for 23 years. Four Australian states, New Zealand and nine other American states have similar legislation allowing for assisted death in the cases of terminally ill patients.
“There are various safeguards involved in the bill, in addition to the laws that operate in the US and Australia, New Zealand, so the judge is an additional safeguard that we’ve introduced here,” said Ellie Ball, media and campaigns manager for Dignity in Dying. “There will also be a kind of cooling-off period for the person to make the request and then reflect on their decision and decide if they do want to go forward. Then, if the doctors and the judge are satisfied that all the conditions are met, the person would be given a prescription for life-ending medication, which they could take at a time in place of their choosing, or indeed not at all.”
What Is The Difference Between Assisted Death And Euthanasia?
The bill has received some criticism for its chosen title because of the distinction between euthanasia and assisted death.
“It’s very unhelpful when there is a debate going on and people call it wrongly an ‘Assisted Dying Bill’,” said Alistair Thompson, spokesperson for Care Not Killing, an organisation that advocates for improving palliative care options over legalising euthanasia and other similar measures. “The bill currently in parliament is based on the Oregon model, so it would be physician-assisted suicide, where a doctor would prescribe drugs to a patient, and then the patient would have to take them themselves. Euthanasia is what they have in Canada, and in Belgium, in the Netherlands and that is where someone actually delivers a lethal cocktail of barbiturates to kill the patient.”
The language around euthanasia is complex and evolving. Although physician-assisted suicide is the technical term for what the ADB proposes, assisted dying is more broadly defined as a practice whereby a person is helped to take their own life by another person, not necessarily a physician.
All of these definitions, however, fall under the wider bracket of euthanasia, of which there are four types: active, passive, indirect and physician-assisted suicide.
- Active euthanasia refers to when a lethal substance is administered to the patient by another party with merciful intent.
- Passive euthanasia is when life-sustaining treatment is withheld or withdrawn at the request of the patient or when continuing to prolong life is seen as futile.
- Indirect euthanasia is when painkillers are prescribed to alleviate suffering but the side effects may be fatal.
- Physician-assisted suicide refers to a patient being aided by a medical professional to end their life upon their request.
What Are The Potential Benefits of Assisted Dying Legislation In The UK?
Proponents of the ADB argue that the benefits outweigh any potential risks and that the legislation is modest enough that it should mitigate potential misuses of it.
Dignity In Dying advocates for empowering terminally ill people already facing death with the right to decide its terms.
“The key thing is the power over the right to make that decision,” said Ball. “We tend not to say ‘the right to die’, but ‘the right to be able to die on your own terms’. Our policy is very much around people who are already dying, who no longer have a choice between life and death, but could have a choice about how they die. It’s not about ending the life of someone who would either otherwise be alive, but about shortening and easing the dying process when that’s already happening.”
For Rae Radford, a social media influencer, assisted death legislation would have been a welcome development for her mother. After a conversation arose about leaving people in vegetative states, Radford promised her mother that she would step in if this ever happened to her.
“After several mini-strokes, my mum had a massive one, leaving her incapable of getting out of bed, moving any limbs and she couldn’t even swallow,” said Radford. “Against my wishes, they operated to insert a peg directly into her stomach so she could be fed. She never wanted to have to mess herself and for a stranger to clean her up or wash her. She had so much pride and dignity but instead of slipping away at the ripe old age of 89, she was left to catch one chest infection after another, taking her three very long months to finally leave this world.”
Radford believes her mother would have signed a document for assisted death, protecting her from further medical intervention as her life ended. She added: “I couldn’t go near nor by the home they’d put her in. I knew if I saw her I wouldn’t be able to help myself. I live knowing that I could have done something about her end of life.”
Dignity In Dying believes that legalising assisted death in the UK could deter people from taking unmonitored trips to other countries where forms of euthanasia are already legal, such as Switzerland.
“There aren’t any safeguards at the moment to stop someone being coerced into going to Switzerland or coerced into giving up treatment or coerced into ending their own life,” explained Ball. “Whereas if we do have legislation, there would be a level of transparency of accountability of regulation that brings everything out into the open.”
Public support for euthanasia appears to be strong. A survey carried out by the campaigning group My Death, My Decision found that more than 90% of respondents believe that assisted dying should be legalised for the terminally ill. The same survey showed that 88% considered it acceptable to allow for dementia patients to receive help with assisted death, as long as they consented prior to losing their mental capacity.
“It’s very important that we listen to terminally ill people, to their relatives, to disabled people, to society at large, to doctors, to everyone who would be affected by this legislation,” said Ball. In the medical field, support for adopting neutral stances on assisted death is also on the rise. Recently, the Royal College of Physicians voted to adopt a neutral stance on assisted dying after canvassing the perspectives of its members. Last September, the British Medical Association (BMA) also adopted a neutral stance after a close vote of 49% in favour of neutrality and 48% against.
BMA medical ethics committee chair John Chisholm said: “As evidenced by the results of our recent survey of the profession and in today’s in-depth debate, doctors have a wide range of personal views on this important issue. As such representatives, they have decided that the most appropriate position for the BMA, as the professional body which represents all doctors and medical students in the UK, to hold is to be neutral on the topic.”
Assisted death legislation has also been introduced in Holyrood by Liam McArthur MSP and via a citizen’s jury in Jersey, which is recommending a change to the law on the island. The debate is ongoing in Ireland after the Oireachtas Justice Committee determined last July that the Dying With Dignity Bill 2020 was unfit for purpose. Concerns were raised about a lack of safeguards to prevent vulnerable people from being pressured into accepting assisted death.
“Parliamentarians are increasingly recognising what the public has long known – that current end-of-life options do not provide sufficient choice or protection to dying people, their loved ones, or healthcare professionals and that reform is urgently needed,” said Sarah Wootton, chief executive of Dignity in Dying. “True choice and control at the end of life is now the hallmark of compassionate, progressive societies the world over, and the UK is now poised to join their ranks.”
What Are The Potential Risks Of Assisted Dying Legislation?
Although there are potential benefits to legalising assisted death, there are also risks associated with introducing such legislation.
For a number of reasons, including a higher cost of living and disproportionate levels of poverty and unemployment, disabled people are already relatively vulnerable in society, but they could become more susceptible to manipulation if assisted death is legalised.
“We know disabled people are discriminated against on a routine basis as they face huge challenges,” said Thompson. “It just seems ‘pie in the sky’ to say it’s not going to increase the problem.”
Baroness Tanni Grey-Thompson, a paralympic multi-gold medallist, has repeatedly spoken out against assisted dying and the threat it could pose to disabled people.
“Legalising ‘assisted dying’ for terminally ill people reinforces prejudices about people with disabilities,” wrote Grey-Thompson in an op-ed. “Terminal illness and physical disability aren’t, of course, the same thing – many people with disabilities aren’t terminally ill. But terminal illness can often bring with it disability of one kind or another and it’s not a big step in popular perceptions to see the two as in some way linked.”
Campaigners at Care Not Killing are concerned that passing the ADB could inadvertently open the floodgates to allowing assisted death for people who are not terminally ill.
“It crosses a dangerous Rubicon,” said Thompson. “It would start to differentiate between different groups of people and the protections they’re entitled to. So, if you are terminally ill, or disabled with a degenerative condition, it says, ‘We will allow you to kill yourself and the state will provide you the drugs to do so and you are not entitled to the same protection as individuals who are fit and healthy’.”
Ireland’s bill faced similar criticisms during scrutiny by the Justice Committee. Responding to concerned submissions and critiques over a lack of adequate safeguards, the report stated: “A point that was repeated frequently throughout submissions in all categories was concern that this bill could result in abuse of the sick and vulnerable, who may perceive themselves to be a burden on their family and feel pressured into opting for assisted dying.”
While assisted death could protect many people from suffering, its introduction has the potential to warp the way society sees and treats death, eventually normalising it and desensitising people to it.
“The so-called ‘right to die’ can very quickly become a duty to die,” said Thompson. “In Holland and Belgium, we’ve seen massive extension from mentally competent terminally ill adults – this was how the legislation was originally sold to the population – to include people with mental health problems, people who weren’t covered by any remit, but are not terminally ill disabled people, even down to minors who can’t consent under a UK legal system and profoundly disabled babies.”
Considering developments in other countries that have already legalised forms of euthanasia, there is concern that the legislation in the UK could end up hurting vulnerable people, instead of protecting them.
In Canada, which changed the law in 2016 to allow for physician-assisted suicide, one year saw 13.7% of people who chose euthanasia cited loneliness or isolation as their motivator. In Oregon, USA, 59% of people in 2019 who opted to end their lives under its physician-assisted suicide scheme cited being a burden as a reason for ending their lives and 7.4% said the financial implications of treatment motivated their decision.
Organisations like Care Not Killing believe that improving palliative care would negate the need for legalising physician-assisted suicide. In England, an estimated 378,427 people receive palliative care every year through a range of services. Studies estimate that many more people could benefit from such care. Up to 90% of all people dying in England may have palliative care needs and up to 215,000 additional people would benefit from receiving it.
“What we should be doing is saying, ‘how can we close those gaps [in palliative care]?’, because that’s generally where the problems are,” said Thompson. “People say they want to die because they’re not being able to access the very best care that this country can offer. I think there is a portrayal that if you have a terminal illness in this country, you are going to die a very horrible, painful death in squalor, but the experience of most people in this country is actually very, very different – and that’s why I think we need to close the gap.”
The ADB is still in the committee stage in Westminster and legislation in Scotland, Jersey and Ireland is also still under scrutiny. It may be a long time before any legislation on assisted death is passed in the UK. Introducing physician-assisted suicide to the UK poses many benefits and risks, which will continue to be fiercely debated, but the problem remains without a definitive solution.
There is no simple answer to the complex question of ‘should we have the right to die on our own terms?’ because creating such a right has the potential to threaten and protect different existing rights. Only time will tell if the UK will opt to introduce such legislation and, if so, how it will avoid endangering the rights of vulnerable people.
This article has been republished under Creative Commons from EachOther (www.eachother.org.uk), a human rights charity which inspires people to think again about human rights.
About the Author: Hannah Shewan Stevens is an NCTJ-accredited freelance journalist, editor, speaker and press officer based in Birmingham. She acted as EachOther’s Interim Editor from Summer 2021 to January 2022. Her areas of interest are broad-ranging but the topics she is most passionate about are disability, social justice, sex and relationships and human rights. Hannah believes in using her own voice and elevating others to create meaningful change in the world. She is also a sex columnist for The Unwritten and has recently completed her first accreditation in delivering Relationships and Sex Education.