The delicate task of granting the right to die

Police officers stood around Adam Wellesley’s mother’s bedside as he kissed her goodbye.

Two months earlier, the 83-year-old had been diagnosed with bone cancer. Unable to bear the pain, she had taken her own life earlier that day.

Within hours of her passing, Wellesley and his sister were told they were under investigation for assisting their mother’s suicide.

A decision not to administer treatment or to end treatment for a disease is lawful in the UK. But to help someone die is not, and carries a maximum prison sentence of 14 years.

Over several weeks in the early months of 2018, as they grieved for their mother, the siblings had their phones taken from them and faced lengthy questioning by the police.

After more than a month, they were told the investigation had been dropped and they were allowed to bury their mother.

“The thing I am most aggrieved at is that the law prevented us from being together when she died,” says Wellesley. “That she had to do this on her own.”

Now, MPs in Westminster will be given the chance to rewrite the law on this emotive issue for the first time in almost a decade.

Kim Leadbeater, a Labour backbencher, is in the process of drafting a private members’ bill, which will set out proposals to grant adults with a terminal illness and nearing the end of life, the right to control their deaths.

A change of law has the public’s support. An Opinium poll published earlier this year found that 75 per cent of respondents are in favour of assisted dying.

If the law changes, England and Wales will join European countries including Switzerland, the Netherlands and Belgium, as well as several US states, Canada, Australia and New Zealand in giving terminally ill people the choice to die.

The eligibility criteria for assisted dying — an umbrella term that can refer to both assisted suicide and voluntary euthanasia — varies enormously across jurisdictions where it is legal.

Oregon, US

Terminally ill, mentally competent adults with a prognosis of six or months or less to live have been legally able to access assisted death since 1997. A patient is given a prescription by a doctor to take away and administer themselves at a time and place of their choosing

The most tightly controlled laws require a terminal diagnosis where a person has a limited time left to live. Others have a much wider set of eligibility criteria such as intolerable suffering, which can be defined not only with regards to physical pain, but also mental health conditions.

Leadbeater is still drafting her bill, but she tells the Financial Times she is largely drawing on the most conservative legislation — such as the US state of Oregon’s Death with Dignity Act, which allows terminally ill individuals to end their lives through the self-administration of lethal medication prescribed by a doctor.

Her bill is expected to call for assisted suicide to be allowed in cases of terminal illness, where a patient has a survival prognosis of six months to one year. Two doctors will be required to agree on the prognosis and mental capacity of the patient to make such a decision, as well as a third layer of legal oversight, such as the permission of a family court judge.

“I have taken the decision that there will be a very tight definition and this will apply only to terminally ill people who have a short time left to live,” she says. “My bill is about shortening death, not ending life.”

I am not sure the UK will be able to avoid the pressure to expand once the door is opened

But how such a law would work still poses substantial questions — especially on the logistics of rolling it out across the largest publicly funded healthcare system in the world, and how courts might be involved in ruling on medical decisions.

Critics fear any law could be a “slippery slope” to fewer restrictions and warn it would increase pressure on the old and disabled to end their lives amid fears they had become a burden on their families.

“I am not sure the UK will be able to avoid the pressure to expand once the door is opened,” says Trudo Lemmens, a law professor at the University of Toronto and a critic of Canada’s assisted dying laws.

The issue presents the UK parliament with a rare and complicated challenge: a vote of conscience, with mortal consequences.

The thorniest question facing MPs is how the state would be involved in assisted dying. 

In Switzerland, the cost of an assisted death is funded by the person accessing the service and it is not available through the state. Non-profit groups, such as Dignitas, instead operate as “membership” organisations. 

Meanwhile in Australia, assisted deaths can take place in hospitals and residential facilities such as care homes, with the majority of the cost usually covered by the patients.

Victoria, Australia

Under the Voluntary Assisted Dying Act 2017, Australians in the south-eastern state can be granted the right to end their lives if they have a terminal illness with a prognosis of six months or less, or a year in cases where a patient has a neurodegenerative disease. Adults applying for the service must make three separate requests to qualify for an assisted death and show they are mentally capable of making such a decision

If the UK passes the law, these deaths would be regulated and funded by the free-at-the-point-of-use NHS.

The British Medical Association, the trade union for British doctors, argues assisted dying services should be organised separately to normal NHS care. “It would provide doctors with the reassurance that they wouldn’t be expected to do this,” says Andrew Green, chair of its ethics committee.

Both the BMA and the Royal College of Physicians take a neutral position on the issue, but Green says that the union would want to see an opt-in service in the legislation for NHS staff, as opposed to opt-out.

The union believes this would remove some of the pressure doctors might feel, as well as ensuring those opting in would have the proper training. “We know there are a number of doctors who think this is a service that should be provided but not one they should be providing themselves,” he says.

Some have ethical concerns around people opting for assisted death because access to existing end of life services is already patchy. These include health secretary Wes Streeting, who has previously indicated he would vote against any changes in the law.

“Is palliative care in this country good enough so that choice would be a real choice, or would people end their lives sooner than they wish because palliative care and end of life care isn’t as good as it could be?” he told the BBC in July.

Not only does a change in law get us talking about end-of-life care, you could also ensure any bill comes with extra funding for all forms of palliative care

Hospices exist on precarious charitable funding despite the key role they play in supporting NHS patients, compared to other countries with assisted dying laws, such as the Netherlands, where they are publicly funded.

On average, independent hospice services in England receive just a third of their overall funding from the government.

The existence of the NHS poses uniquely difficult ethical questions for MPs looking to change the law, says Katherine Sleeman, a doctor and academic in palliative medicine at King’s College London.

“Around two-thirds of hospice care in this country is funded by charity, so are we as a society saying that assisted dying should be fully funded by the NHS, but not other forms of dying?” she asks.

Critics of legalising assisted dying say it lessens the incentive for better palliative care. Those in favour argue it can focus attention on the level of support available for those coming to the end of their lives and improve the overall offering.

“Assisted dying is just part of the palliative care tool box,” says Sarah Wootton, chief executive of campaign group Dignity in Dying. “Not only does a change in law get us talking about end-of-life care, the government could also ensure any bill comes with extra funding for all forms of palliative care.”

But Paul Perkins, a consultant in palliative medicine and chief medical director at charity Sue Ryder, says he fears that offering an assisted death in a hospice could put the public off accessing their services.

“Patients need to know that palliative care doesn’t change the timing of someone’s death, it is about trying to help people to have the best quality of life possible while facing life-threatening illnesses,” he says. “If we are linked with assisted dying, would it mean people are even more scared of meeting us?”

As well as the role of NHS staff in the process, there are also questions over how the lethal drugs would be administered to patients and where.

Canada

Medical assistance in dying (Maid) is accessed by adults with terminal illness and chronic physical health conditions. In most instances, an assisted death is carried out by a doctor or nurse practitioner administering a lethal injection

In Oregon, the public are provided with oral drugs which they take at a later point, often unsupervised. In Canada, patients can be administered the drugs via the IV route in a supervised setting.

Recent polling from King’s College London shows people would like to end their lives in their own homes, Sleeman notes, but also they want to have a medical professional with them throughout. “Is this something we can really cater for given the pressures on the health service?” she asks. “These are the details that we have to be considering.”

Leadbetter argues that the limited nature of her legislation will ease the pressure on the NHS. Since Oregon’s similar law was passed in 1997, a total of 4,274 people have been given a lethal prescription. Last year, assisted deaths accounted for an estimated 0.8 per cent of total deaths in the state.

Under her bill, “it’s just not true to say that the NHS here would suddenly be overwhelmed with demand”, says Leadbeater. “We are not talking about thousands and thousands of people, we are talking about very small numbers who will be eligible.”

Lawmakers in the UK must also consider how the courts might be involved.

The bill will propose a third layer of judicial oversight for a patient seeking to end their life, which means judges might be asked to approve or deny applications, possibly in the family courts.

“England and Wales could have two publicly funded limbs of the organs of state both involved in this”, notes James Lister, a partner at Stevens & Bolton. “Depending on your moral standing, this might be exactly the right thing to do, or completely reprehensible.”

The family courts are already making decisions on private issues, he notes, for example on matters of surrogacy and adoption. “It’s not a massive leap to suggest they could have a role in assisted dying,” he says. “Anything involving the court system and a degree of oversight, I would say, is going to be a good thing.”

But the exact role of judges in the process demands far more detail, argues Alex Ruck Keene, a barrister who for years tried without success to change the law on assisted dying in the courts on behalf of the late campaigner Noel Conway.

The Netherlands

Since 2001, doctors can administer a lethal injection, or prescribe drugs to patients over the age of 12 if they are able to demonstrate that they are experiencing ‘unbearable suffering with no prospect of improvement’. In May, a 29-year-old Dutch woman with mental health issues, Zoraya ter Beek, above, made international headlines after she was given permission to die after enduring what she described as ‘unbearable mental suffering’

“What exactly are the courts going to be asked to do?” he asks. “Can judges simply approve applications on paper? If doctors involved in the process have to see the person, why should it be different for the judge? If there are hearings, what would they look like?

“Would the judge need to appoint someone to test the evidence, for instance as to prognosis, or argue against consent being given? Where there are courts, there are usually lawyers — who is going to pay for them? The person themselves? Or should legal aid be available so as not to discriminate against those who cannot afford representation?”

If judges are to be a defence against the potential for abuse, Ruck Keene believes there is a “meta level question” that any law needs to give a clear answer to. “Where the person has capacity to seek assisted dying and does not appear to be being coerced, but says that they feel they are a burden, would parliament expect the judge to approve or refuse their request?”

The one thing I am clear about at the moment is that there has to be a third level of oversight, whether a judge is the best person I am not sure

Despite fears raised over the possibility of coercion by campaigners working to prevent a change in law, there are few documented incidents of coercion reported in other jurisdictions.

“In reality, you see families reporting that it was them who had to come to terms with a family member’s decision to die,” says Emily Jackson from the London School of Economics. “It is much more common for families to want to prolong the time they have with their loved one.” 

But involving the courts also raises the question of capacity. The UK’s cash-strapped family courts system is already grappling with huge backlogs, which can lead to hearings being delayed for months, or even years in some cases.

Leadbeater says she is still consulting with experts, including those based in the family courts.

“The one thing I am clear about at the moment is that there has to be a third level of oversight, whether a judge is the best person I am not sure,” Leadbeater says. “I don’t want it to become a tick box exercise, which wouldn’t be as robust as I want it to be.”

Despite the growing public support for a relaxation of the rules, there remains fierce opposition from some disability rights campaigners and medical figures.

Justin Welby, the Archbishop of Canterbury, is one of a number of proponents of the “slippery slope” argument, who believe the eligibility criteria will inevitably be extended. They point to Canada, where a medical assistance in dying programme (Maid) has been legal since 2016.

Initially only available for those with a terminal illness and whose natural death was “reasonably foreseeable”, the law changed in 2021 to include Canadians with a serious and incurable illness, disease or disability. From March 2027, the law will be extended to include mental illness.

Given the strains on the UK’s NHS, expansion is inevitable, argues Lemmens of the University of Toronto. “The systemic, financial ‘advantages’ of offering death instead of care in a failing healthcare and social support system are such that it will be an uphill battle to contain it.”

The Netherlands and Belgium have also extended their eligibility criteria to include minors. In the former, anyone over the age of 12 qualifies, while the latter has no minimum age.

In such places “the limits on who qualifies for an assisted death, or the interpretation of the law have expanded,” says Gordon Macdonald, CEO of campaign group Care Not Killing. “No longer is state aided killing limited to mentally competent adults with less than six months to live.”

But Leadbeater points to other jurisdictions that have not broadened their criteria, such as Oregon, as well as a number of Australian states. “Those are the types of models we are looking at,” she insists.

“We have a system in this country where parliament is supreme, the courts couldn’t change the legislation. I would never want it to cover mental health conditions, elderly or disabled people. I am really clear about that.” 

What is clear is that many people in the UK are desperate for some kind of solution — desperate enough, like Wellesley’s mother, to take matters into their own hands.

Every year, Oregon produces a report setting out the number of deaths and the reasons patients gave to end their lives. In its latest report, the most frequently reported end-of-life concerns were “loss of autonomy, decreasing ability to participate in activities that made life enjoyable, and loss of dignity”.

“My mother wasn’t scared of dying,” says Wellesley. “But she was scared about how she would die. She loved her life and just wanted to remain in control of it as best she could right up to its end.”