Who decides whether assisted dying is right or wrong?

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Assisted dying. Paul Hensby argues that people living with terminal illness must have a choice over their end of life care and also the legal right, if required, to an assisted death.

The most recent study of UK attitudes towards assisted dying (Populus 2015)* revealed that 82% percent of people polled support a change in the law on assisted dying for terminally ill adults. Indeed, news stories in the past few weeks, including the decision of voters in Colorado to permit physician-assisted dying, has raised interest in the options open to people who are approaching end of life or are terminally ill.

The debate around assisted dying is hugely emotive, polarising opinion between those who feel our society should allow the terminally ill the choice to decide when to die and those who feel this is sanctioning suicide and endangering the vulnerable. For those living with terminal illness and their loved ones, this is an intensely personal issue but one which offers no sense of right or wrong.

It is, of course, in our makeup to want to live as long as possible, and in selfish terms for those close to us to want us to continue living. This evolutionary desire to survive also combines with our fear of the unknown and what is an understandable wish to hang on to life. But it seems increasingly, and almost in direct relation to medical science’s growing ability to keep us living longer, that people are asking for a legitimised pathway to a peaceful and managed, assisted death.

Among the many respected individuals who have argued for the legalisation of assisted suicide, the Archbishop Desmond Tutu, is now among them. In his recent 85th birthday message, he told the Washington Post that he wants the option of assisted death.

“With my life closer to its end than its beginning, I wish to help give people dignity in dying. Just as I have argued firmly for compassion and fairness in life, I believe that terminally ill people should be treated with the same compassion and fairness when it comes to their deaths.

"Dying people should have the right to choose how and when they leave Mother Earth. I believe that, alongside the wonderful palliative care that exists, their choices should include a dignified assisted death.”

This is a remarkable conversion following his lifelong opposition to assisted dying, and he addressed this contradiction by saying he believed in the sanctity of life but also that terminally ill people should not be forced to endure terrible pain and suffering, but instead should have control over the manner and timing of their death.

“I have prepared for my death and have made it clear that I do not wish to be kept alive at all costs. I hope I am treated with compassion and allowed to pass on to the next phase of life’s journey in the manner of my choice,” Tutu added.

At the other end of the pro-choice argument was the young Australian woman, Kylie Monaghan, who died at the age of 35 in October 2016, after a six-year battle with breast cancer. In the months before her death, she had spoken about not wanting to spend her final days as a 'burden' and her passion for Australia's assisted dying laws to be changed.

Kylie was proud to campaign in support of the Death with Dignity bill, which would have legalised voluntary euthanasia. A touching statement issued by her family after her death stated that: 'Kylie was proud to be the face of the 'Be the Bill' campaign and she was clear that the right to die with dignity was a legacy she wanted to leave behind.’

The Bill was defeated by a single vote in the South Australian Parliament.

Proponents for the 'right to die' law change continue to campaign, indeed this summer Canada’s lawmakers passed a Bill to allow medically-assisted death for terminally ill people, making Canada one of the few countries where doctors can legally help sick people die.

Last year in this country, a similar Bill – though based more on the assisted dying legislation enacted several years ago in Oregon, USA - was defeated in the House of Commons, despite it being virtually the same as Lord Falconer’s proposals which had won the backing of the House of Lords. So why is the UK not yet following the example of liberal-minded jurisdictions where the right to decide the manner in which your life ends is protected in law?

One major reason is the scale of the opposition, with the BMA – the doctors’ union – against it, lined up with faith groups led by the current Archbishop of Canterbury Justin Welby who said changing the law to allow assisted dying could introduce a culture “where each life is no longer seen as worth protecting, worth honouring, worth fighting for” and that suicide was being actively supported instead of being viewed as a tragedy. Interestingly, one of his predecessors, George Carey, backs assisted dying saying that there's nothing dignified about experiencing pain at its most awful.

Much of the opposition to changing the law was marshalled by the pressure group Care Not Killing which stressed the dangers that go with assisted suicide. Care Not Killing Director Dr Peter Saunders, therefore, welcomed the rejection of the legislation, saying the current law “protects those who have no voice against exploitation and coercion, it acts as a powerful deterrent to would-be abusers and does not need changing. "Such arguments convinced 75 per cent of MPs to vote against a change in the law, something which outraged Sarah Wootton, head of Dignity in Dying who pointed out that the vote had gone against the views of the majority of the public who supported the bill. She added that "dying people deserve better.”

At this point, I must stress that my view is not that of Final Choices nor of any organisations linked to the site. However, I think that we are now at a stage where people should be able to make their own choice, as long as the safeguards are sensible and secure. The legislation allowing it should, I believe, draw on the experience of Oregon’s Death with Dignity Act. This has been in force for 18 years and has enabled a small number of people who were terminally ill to request the choice of an assisted death. In practice, only a small number of patients have had an assisted death – only 132 out of 218 people who were prescribed lethal medication in 2015 opted to do so. There has been no evidence of abuse since the law was passed.

I also believe that we deserve a good death, and to face a period of intense suffering which has such a terrible effect on our loved ones who have to witness our terminal decline over a long period, is not a ‘good death’. How we are to define a good death will be difficult, indeed the wording of this end of life situation highlights the problem. ‘Assisted Dying’ all too easily suggests pressure being put on the ailing. ‘Assisted suicide’ contains the word suicide which is illegal and very often a personal and family tragedy. ‘Euthanasia’ is to many is a morally repugnant term, representing a culling of the old and infirm for the benefit of a younger, healthier elite.

‘Dignity’ which has been used by what was formerly the Voluntary Euthanasia Society to rebrand as Dignity in Dying is a much better word as a good death is a dignified death and is the opposite of a life ending in prolonged pain and enduring terrible suffering devoid of any quality.

Better still is the concept of us all being able to have a ‘good death’ thanks to creating our own personal, unique Death Plan. This will, as a central part of planning for our deaths, address the medical issues and will inevitably involve discussions with our medical professionals as well as our loved ones. How much intervention will thus be addressed and agreed by the person whose death is being planned?

But it can also offer a wider, more holistic approach to the ending of our lives, including where we want to die, who we want to be with us, our physical surroundings when dying, our state of mind and the reassurance that as much as possible has been done to reduce the stress our loved ones face, knowing that we have been in control of how we end our lives, that our matters have been finalised, our funerals planned.

It beholds us all as we enter the final years of our lives to have a death plan so that we have, if at all possible, a good death. After all this is the most personal of issues we have to confront, and not one that we should leave to the courts or to Parliament, though judges and politicians should support the growing use of Death Plans so that within a few years, they are as common to those whose lives are ending as Birth Plans are to mothers giving birth to a new life.

Writing a death plan

Writing a death plan

A death plan allows you to relieve the burden of decision making from the shoulders of those you love and creates the opportunity for a peaceful end of life.

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Tags: terminal illness end of life care assisted dying assisted suicide Death plan assisted death Death with Dignity bill Dignity in Dying Care not Killing voluntary euthanasia

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