Feature: Should the Assisted Dying Bill be seen as an extension of palliative care?

As the most recent version of the Assisted Dying Bill is debated in the House of Lords, Social Care Today reporter Tamara Krivskaya asks disability campaigners and patient advocacy groups if assisted dying should be seen as a natural extension of palliative care.

Tony Nicklinson was a man with locked-in syndrome who fought in the courts to legally end his life. He ended up passing away without assistance in 2012, aged 58, after resorting to a hunger strike. His story was widely covered by various media outlets, and it ultimately sparked a national debate – should we allow the medical system to assist those who are suffering to end their lives? 

For some, the answer to this question is a definitive ‘yes’. One such organisation is My Death, My Decision, which actively campaigns for the legalisation of assisted dying in England and Wales.

Trevor Moore, the chair of My Death, My Decision, tells Social Care Today that an assisted dying bill should be seen as a compassionate legislation, allowing those at the end of their lives to make a choice about how and when they die. For organisations like this, assisted suicide is seen as another treatment option which should be available to patients, given they meet certain criteria.

The proposed bill in its current form stipulates that only those who are terminally ill and have been given 6 months or less to live can choose the option of assisted suicide. The process would also require four separate interviews by medical professionals to confirm that the individual is of ‘sound mind’ and is making that choice voluntarily and without coercion.

My Death, My Decision not only supports the current bill, but also goes further to campaign for wider eligibility criteria. In particular, it has expressed concerns that the 6-month cut-off is insufficient, as life expectancy and levels of suffering don’t always correlate. For example, someone could be ‘suffering intolerably’, and yet have years to live. 

‘We definitely think that the current 6-month cut-off is arbitrary and discriminatory’, says Mr Moore.

. Mr Moore admits there is also a question of how someone would define intolerable suffering.

He says: ‘Our organisation is campaigning for an assisted dying law that would extend to people who are suffering from an incurable condition and their suffering is intolerable.

‘Whether or not someone is suffering intolerably should be a subjective test. It is not for medics to say, “Oh, you’re not suffering enough”.’

Mr Moore also points to international examples where similar laws have been successful, such as in Holland, Belgium, Oregon (US), and the Netherlands.

Those that currently wish to end their life have to go abroad, which can be prohibitively expensive and would remove the option of passing away peacefully in one’s own home. A domestic assisted dying bill would solve this problem, Mr Moore says.

Not Dead Yet is a charity on the opposite end of the spectrum, advocating against the passing of the Assisted Dying Bill in the UK. Members cite concerns over the extent to which disabled people might feel ‘coerced’ into ending their lives early due to feeling like a burden or being unable to access the pain relief or treatments they need.

Phil Friend is one of the UK’s foremost consultants on disability matters and a member of Not Dead Yet. He is also a wheelchair user as a result of polio complications from when he was a child.

In his own words, the charity is ‘about resisting a change in the law on assisted suicide’. Mr Friend stressed that it has nothing to do with the charity’s moral or religious stance on suicide in general, but rather the structural issues that would come up as a result of the proposed law change.

In response to proponents’ claims that successful international models already exist, Mr Friend cautions that the situation in the UK is unique and not comparable. Countries like Switzerland have fully functioning safety nets and established end-of-life care provision.

With social care and the NHS chronically underfunded and understaffed, the question arises of whether it is possible to make this an uncoerced decision. A combination of ‘intolerable suffering’ and 18-month-long waiting lists risks turning assisted suicide into a treatment option worth considering.

Mr Friend explains: ‘The NHS is under unprecedented stress. The hospice movement is more or less funded by voluntary donations, the government pays very little towards the end-of-life care. That’s outrageous. In the fifth richest country in the world, we can’t even afford to make sure that every area has good palliative  care for people who are terminally ill.’

‘Until that is rectified, why the hell are we talking about ending life? It is a much cheaper option, of course.’

He adds: ‘We’re campaigning to leave the law as it is. And that’s a really difficult to campaign for because usually people campaign to change things for the better.’ 

‘However, what I would say to that is that the alternatives you’re proposing are too dangerous. They are making the lives of disabled people less valuable. You are not putting in safeguards that we believe to be safe. And we are not resourced as a country to enable people to have a quality of life that might persuade them that they don’t want to die. Until those things are sorted out, we’re going nowhere near this change in the law.’

He also explains that there is an important distinction between ‘assisted suicide’ and ‘assisted dying’, claiming that the latter is already legal in the UK as people are able to stop their own treatment or issue DNR orders, even in cases where this would result in certain death.

‘We refuse to call it assisted dying. It’s not assisted dying, because that’s not illegal. This law is about assisted suicide’.

Mr Friend also warns that not all data from abroad is as clear cut as it might appear. For example, a 2006 study by the Oregon Health & Science University showed that many doctors who have participated in assisted dying procedures are adversely affected emotionally and psychologically by their experiences in the long-term. The effects of this law do not end with the patient, he explains.

‘None of us know what we will be like at the end’, says Mr Friend, ‘What I do know is that many of the reasons that I might want to end my life have nothing to do with me, but a lot to do with those I care about’.

So far, the Assisted Dying Bill has had over 100 proposed amendments, which is a stark indicator that even those who find themselves on either side of the debate often cannot agree on what the bill would actually look like. Time will tell whether the UK will see its own assisted dying legislation but what remains evident is that, for a law like this to be ethical, the government must first focus on improving the state of health, social and end-of-life care in the country.

Mr Friend concludes: ‘I get [the other side of the debate], I really do. But changing the laws as it stands would simply be too dangerous for the rest of us.’

Photo by Tima Miroshnichenko