The actress and journalist Liz Carr recently broadcast a two-part documentary on the BBC World Service entitled ‘When assisted death is legal’.
The programme documents the current legal systems that operate in Switzerland, Luxembourg, Belgium, Netherlands and Oregon.
An open sceptic of the issue, Carr seeks to understand if – in her words – “you [can] balance the right of an individual with the responsibility of society to protect people.” The documentary was a well-produced insight into this question.
Dignity in Dying supports assisted dying not euthanasia
Carr’s travels encompass a wide range of practices in helping people to die; from voluntary euthanasia to assisted dying, this conflation is a problem which Dignity in Dying encounters regularly. To be clear, Dignity in Dying campaigns for the choice for terminally ill people, who are mentally competent, to be able to ask a doctor for life ending medication which they would take themselves, unaided, if their suffering became unbearable. This differs from assisted suicide and voluntary euthanasia which encompasses people who are either not terminally ill (for example they have a chronic illness) or who don’t take the life-ending medication themselves but have it directly administered by a doctor. The title is therefore unfortunate as it could easily lead listeners to believe that ‘assisted dying’ encompasses all of cases in Carr’s documentary.
Carr first explores the law in Switzerland which, due to it being the location of Dignitas, is a country increasingly synonymous with assisted dying. In the last ten years over 200 Britons have travelled to Dignitas to end their lives.
Denise, a Swiss national whose husband went to Dignitas after suffering with terminal pancreatic cancer, recounts her experience from their last moments together including his eventual death: “it was as if he had been released. The last two nights we had he almost forgot he was ill – it was wonderful.” It is perhaps impossible for anyone to imagine what this must be like for a loved one, let alone the person who has made the decision, but what is clear is that Denise is adamant this was what her husband wanted. The acceptance of assisted death which is now ‘ingrained’ in Swiss culture (a 2011 referendum to only allow Swiss residents access to Dignitas was overwhelmingly rejected) is something that Carr is worried about and calls this normalisation ‘weird’, while also admitting how uncomfortable she was when speaking to Denise – presumably because of her frankness on the subject of her husband’s death. Denise’s acceptance could be mistaken for coldness, but this is not a policy that “favours killing people in despair” as an opponent to the law in the documentary describes, but one which recognises an individual’s autonomy.
The benefits of having a law (what Carr would see as normalising) is shown in how the police, coroner and forensic team are all involved in the process; Denise noted how they treated her compassionately and it shows how an important investigation can be done without disregarding the grieving process. Currently, the family and friends who have accompanied their loved ones to Dignitas can expect the possibility of the police knocking on their door once they’ve returned to Britain. What can follow is a torturous process for someone who, after respecting the wishes of a loved one, now has to be investigated by the police.
When recounting the history of its law, Carr wonders how euthanasia and assisted suicide became legal in a country as Catholic as Luxembourg. The fact that religion is seen as a reason for opposing assisted dying is part fallacy; the vast majority of people who consider themselves to have a faith support a change in the law . A statistic that only five people have benefitted from the existing law is used by Carr to ask whether it was “worth it”, to which the terse response she receives from a Luxemburg politician who supports the law is – “it’s about liberty of choice, not figures.”
An important and reasonable concern is if such a law might be seen to put pressure on people, a question raised by a Christian Socialist and one that Carr agrees with in the affirmative. Coming off the back of the statistic that ‘only’ five people have chosen an assisted death and Carr’s own admission that opponents of the law have had to admit there have been no problems since its inception, it can heavily be inferred that the answer is ‘no’.
Unfortunately this evidence does not soften Carr’s doubts; she fears that a law could be extended without discussion. Frustratingly Carr admits “this has not happened in Luxembourg yet” but then ends the segment noting “the way people talk to me makes me worried”. I say frustrating because the evidence consistently shows that her fears are not actually realised in the countries that have put them into practice.
The last country under consideration in Episode One is Belgium. The Vice President of a Belgian Right to Die organisation (ADMD) is of the opinion that “the passing of the law just legalized what people were doing anyway”. With 248 Britons travelling to Dignitas in the past decade this is an argument that is relevant to UK considerations. It’s not saying that if people are breaking the law the solution is to automatically change it, but to attentively look at who we are punishing and why.
In 2010 the Director of Public Prosecutions revised its guidelines so that people who had assisted someone to end their own life would be treated with compassion. With the wide support of the public on this issue, and the fact that no one has been prosecuted since the DPP ruling, we have to ask why we believe that people can travel to another country to end their lives but aren’t allowed to do so in the UK. Those who have travelled to Dignitas have perhaps done so early, so they can be sure of being able to travel, whereas if there was an assisted dying law in this country this might not be the case. Dying people would be free to choose when to die in their homes surrounded by family – not spend their final stage of life arranging travel plans and financial costs and worrying whether their loved ones will face the threat of prosecution upon their return. It’s not just a case of legalizing what people are doing anyway, but understanding why people are doing it and whether this shows that the law is not fit for purpose.
Conclusion – Episode 1
In her concluding statement to this first episode, Carr believes the biggest problem with assisted suicide is the current economic climate. Carr poses this question to the audience – “How can we be sure that assisted suicide won’t be seen as the easy option?”. This question is not technically relevant to the assisted dying debate as we are concerned with people who are suffering from a terminal illness; the key difference is that patients who are dying do not have a ‘life or death’ option but an interest in how good or bad the experience of their death is – the outcome is unfortunately inevitable. An assisted dying law would not result in more people dying, rather less people suffering.
Carr finishes the episode with an anecdote about her Uncle’s final stages of life while suffering from lung cancer. A nurse believed he was saying “I want to go”, but after asking him to repeat himself realised he was saying “I want to know”. Happily, Carr says that her uncle died a peaceful and natural death with his family around him. Although the insinuation is that her Uncle’s question could have been misconstrued, the kind of law we propose would involve rigorous safeguards and checks – a patient making it known that they wanted to die would not result in an instant assisted death. However the most important aspect of this experience is that her Uncle’s wishes were respected. This is what Dignity in Dying campaigns for – respecting people’s right to have control over their own dying process.
The second episode begins in the Netherlands, a country which allows voluntary euthanasia and assisted dying. Around 3,000 people have died each year, which accounts for 3% of all deaths, and almost all were cancer patients (only a handful of people use assisted dying). The Netherlands is having discussions which seek to extend the law for anyone above 70 who is ‘tired of life’. Petra De Jong, involved in the Right to Die movement, remarks “whether you’re healthy or not healthy you must have the right to leave this life.” This will be the next major debate according to Carr. Even if this is the case, it does not mean that the current law will inevitably lead to a wider law, only that there would be a discussion for the Dutch electorate to decide on. UK public polls show that there is strong support for terminally ill people having the choice of an assisted death, but that public support completely falls away when looking at whether people who are ‘tired of life’ should be able to have help to die.
The last stop on this tour is to the United States of America, and the states of Oregon and Washington which have legalised assisted dying for terminally ill people only, with the stipulation that the medication has to be taken by the patient. Carr points out that it is no surprise Oregon was the first state to advocate this position; a history of championing traditional libertarian values flourished during the Progressive Era of US politics in Oregon which Carr sums up as a belief in ‘no state intervention’. She notices that the conversation around death will constantly include the term ‘dignity’, even the law is titled the Death With Dignity Act. It transpires the right to a dignified death is what propelled Oregon to adopt this stance.
Barbara Coombs Lee of the end of life charity Compassion and Choices’ sums up what she believes prompts someone to choose an assisted death: “people who have lived full and satisfying lives, people who have felt in control of their circumstances [are] probably unwilling to leave death to a roll of a dice.” Coombs Lee also clarifies that assisted suicide is still a felony in Oregon and that this law did not influence that ruling. Instead, “the law makes absolutely clear the distinction between this and a medical practice which offers aid to a person in the final stages of illness to seek as peaceful a death as possible. It is about respect.”
The history of Oregon’s assisted dying law is worth noting. It passed by a small minority (a margin of just over 2%) when first introduced in 1994. Three years after its original implementation an attempt was made to repeal the legislation. This failed and, in fact, approval had risen to 60% – an incredible 10% hike in support from in just three years. It appears the people of Oregon have no fears when it comes to a slippery slope and they defeated a second attempt to restrict their rights by the Bush administration in 2006.
In one of the most affecting and thought-provoking segments of this documentary, Carr speaks to the disability group Not Dead Yet – “if your life is so miserable because you don’t have choice of self-determination, and your choice is to die, that is a phony form of freedom.” This is the reason why Carr feels so passionately about the subject of assisted dying – it could affect how people view disability. This would be detrimental to what an assisted dying law hopes to achieve, and simply wouldn’t happen. It is up to the individual, and no one else, to define what they perceive as an undignified death and I would hope this distinction is clear. For some people doing certain things – even mundane ‘everyday’ things – is intrinsically part of what they regard as their life.
I recently spoke to one of our supporters whose brother had chosen to have an assisted death at Dignitas– for him it was the inability of one action that signalled the loss of control over his life which he had so valued. Again, it is crucial to note that this was significant because it was his decision about his own quality of life, not a state-imposed ruling of what constitutes a good or bad life. A UK assisted dying law would mean respecting people’s choices while still ensuring that the strictest safeguards are in place – critically, only people with terminal illness would qualify – a person who is disabled or chronically ill, but not terminal, would not be eligible for assisted dying.
The law in Oregon paved the way for its passing in Washington. Rob Mellor from Compassion and Choices: “the law in Washington is almost an exact copy of Oregon law and this was part of our campaign. The Oregon law safety has been well established again and again. We referred to this to counter the arguments of the opposition and there was no way for them to document their case, no data or statistics, just a fear based campaign.”
I would certainly not ascribe the accusation of fear mongering at Liz Carr’s ‘When assisted death is legal’ which is a fine programme. Featuring a broad array of viewpoints it manages to fit in analysis of five separate countries, all with adequate coverage, in a short space of time -although I fear that the public confusion between assisted dying, suicide and euthanasia has not been helped. I would recommend everyone to listen to Carr’s concerns, which need to be part of the assisted dying debate. “Can the state regulate medical killing, and should it?” asks Carr, to which “the answer for me is still no.”
My own question would be ‘should the state force a terminally ill, mentally competent person to continue suffering, against their wishes?’ My answer is no, and according to UK polls, this is also the answer of the British public.
If your answer would be the same please join the Dignity in Dying Campaign here