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The Right to Die – Personal Choice or Public Safety?

A series of high profile and often very moving cases in recent years has made the right to die one of the most keenly contested debates of our time, raising complex medical, legal, legislative, religious and moral issues. Can helping someone to die ever be justified? If so, in what circumstances? What controls might be required to protect the rights of people making the decision to die as well as those of their family and friends and the medical practitioners and others involved in their care? If not, who has the right to condemn a terminally ill patient to prolonged suffering and how can that right be justified? What is the difference between assisted dying, assisted suicide and euthanasia and does it matter?

Sarah Wootton of Dignity In Dying and Dr Peter Saunders of the Care Not Killing Alliance make the case for and against assisted dying.

Sarah Wootton

Dignity In Dying

Sarah Wootton is the Chief Executive of Dignity in Dying, one of the highest-profile political campaigns in the UK today. Under her leadership, Dignity in Dying successfully challenged the legal system by winning the Debbie Purdy case, leading to the historic recognition that in certain circumstances people should not be prosecuted for helping a loved one to die.

Sarah has also established and is Chief Executive of Dignity in Dying’s partner charity, Compassion in Dying, which informs and empowers people around their existing end-of-life rights through free Advance Decisions, an Information Line and now a Big Lottery-funded advocacy project. Previously, she led campaigns at the Equal Opportunities Commission and the Family Planning Association and was a founding trustee of Abortion Rights.

Dignity in Dying is a national membership organisation, with over 25,000 supporters calling for greater choice and control at the end of life.   Dignity in Dying campaigns for a change in the law to allow terminally ill, mentally competent adults the choice of an assisted death, within strict legal safeguards.

Dignity in Dying campaigns by lobbying decision-makers, educating legal and healthcare professionals and empowering terminally ill people and their loved ones who are suffering under the current system to have their voices heard.

Dr Peter Saunders

Care Not Killing

Peter Saunders is Campaign Director of the Care Not Killing Alliance, a coalition of over 40 UK-based organisations promoting palliative care and opposing the legalisation of euthanasia and assisted suicide.

Peter has also since 1999 been Chief Executive of Christian Medical Fellowship, a CNK member organisation with a membership of 4,000 UK doctors and 800 medical students. He was born in New Zealand and previously trained as a general surgeon before coming to the UK in 1989.

Peter is married with three children.

Care Not Killing is a UK-based alliance of individuals and organisations which brings together disability and human rights groups, healthcare providers and faith-based bodies with the aims of promoting more and better palliative care, ensuring that existing laws against euthanasia and assisted suicide are not weakened or repealed and influencing the balance of public opinion against any further weakening of the law.

Care Not Killing seeks to attract the broadest support among the very many in the medical profession and allied health services and in society at large who are opposed to euthanasia. It appeals to those of all faiths and none by adducing arguments based on reason alone, by avoiding any appeals to extremism and by drawing on and developing a well-researched evidence base.

Proposition

I had the privilege to know Dr Ann McPherson, a GP and renowned champion of patient rights. Sadly, Ann developed pancreatic cancer and died last year.

Her daughter Tess McPherson, herself a doctor, wrote of her mother’s death in a recent edition of the British Medical Journal:

“Mum was diagnosed as having pancreatic cancer in 2007…For at least three years mum’s life with cancer was worth living…but [in May last year] mum had had enough... The cancer had spread to around the gastric outlet so that she could no longer eat anything solid and even fluids were difficult. Her chest drain had started to leak and was pouring out fluid that drenched her dressings. She had lost so much weight. She was getting pressure sores. She had had enough…

"...What followed were three weeks of living agony. She had become tolerant to morphine after taking it for two years. She needed her dressings changed at least twice a day.

"She felt ill in a way that only dying people can feel, and she knew that she would never feel any better. She resented life now. She no longer enjoyed seeing people, could no longer eat or walk, and could barely talk. But she did manage to express that she felt “bloody awful” and would rather be dead.”

Dr Peter Saunders, CEO of the Christian Medical Fellowship and Campaign Director of Care not Killing, has frequently argued that Ann and others should not have the choice of an assisted death. He claims that allowing them the death they desire would endanger vulnerable patients, lead to a slippery slope and damage palliative care provision. These are empirical claims which are not backed up by the evidence.

Independent academic research shows that there is no evidence that vulnerable patients are adversely affected by legalised assistance to die. Though assisted dying has been available in the US state of Oregon since 1997, there have been no calls to widen access beyond the terminally ill and mentally competent and assisted deaths have never accounted for more than 0.24% of deaths. Research by the European Association of Palliative Care found that legalising assistance to die does not impact negatively on palliative care provision.

Of course any assisted dying law must be carefully drafted to protect patients and healthcare professionals. This is what Dignity in Dying and the All-Party Parliamentary Group on Choice at the End of Life aim to do. Our draft Bill, currently out for consultation, includes strict safeguards to ensure that those who are assisted to die have made a settled decision of their own free will and a conscience clause to protect healthcare professionals who do not wish to be involved.

To be clear, I am advocating assisted dying for terminally ill, mentally competent adults who, after meeting upfront safeguards, can be prescribed life ending medication which they take themselves.

I do not advocate a change in the law on assisted suicide for non-terminally ill people or euthanasia, where doctors can directly end a patient’s life. Opponents of assisted dying like to argue that there is no difference.

However, it is certainly possible to create a legal distinction: the US states of Oregon and Washington permit assisted dying only whereas Switzerland allows assisted suicide and the Netherlands has legalised euthanasia.  I would argue that there is an inherent distinction too: a person who is terminally ill has no choice over whether or not they die. They only have a choice over how they die.

Opponents often claim that if we support assisted dying we must logically (and secretly) support assisted suicide and euthanasia as they are based on the same principles of choice and autonomy. This is a daft argument as most laws balance personal freedoms with wider protections for society. It’s a matter of where you draw the line.

There is a strong case for legalisation on the grounds of respecting autonomy and preventing suffering. These considerations would be outweighed if legalisation resulted in compromised patient safety and a slippery slope. But it doesn’t. There is no good reason not to legalise assisted dying.

Proposition

Both euthanasia (being killed by a doctor) and assisted suicide (receiving help to kill oneself) have always been illegal in Britain and remain so under the murder law and Suicide Act respectively.

British legislatures have debated decriminalisation three times since 2006 and rejected it by large majorities on each occasion on public safety grounds – in the House of Lords in 2006 and 2009 (by 148-100 and 194-141 respectively) and in the Scottish Parliament in 2010 (by 85-16).

The vast majority of UK doctors remain opposed to legalisation along with the British Medical Association, the Royal College of Physicians, the Association for Palliative Medicine and the British Geriatric Society.

Similarly all major disability rights groups in Britain have resisted any change in the law believing it will lead to increased prejudice towards them and increased pressure ‘to seek help to die’. The reasons they give are clear. Any change in the law to allow assisted suicide or euthanasia would place subtle pressure on vulnerable people to end their lives, not so much overt coercion but rather an internally felt sense of not wanting to be a financial, emotional or care burden upon others. Those who are disabled, elderly, sick or depressed would be particularly at risk. The right to die, in other words, could so easily become the duty to die.

The first duty of Parliament is to protect its citizens. Elder abuse and neglect by families, carers and institutions is real and dangerous and a law allowing the active ending of life could be so easily exploited and abused. This is why strong laws are necessary.

These fears have been heightened by evidence from jurisdictions which have legalised assisted suicide, euthanasia or both. The annual rate of assisted suicides in the US state of Oregon has increased steeply by 450% since 1998. In Switzerland there has been a 700% increase over the same period. In the Netherlands the number of euthanasia cases has almost doubled since 2006 from 1,923 to 3,695 with increases of 15-20% each year. Furthermore, in that country one in eight of all deaths, 16,700 in 2010, involved the practice of ‘continuous deep sedation’ whereby patients are effectively doped and dehydrated to death.

Reports from the Netherlands of psychiatric and dementia patients being euthanised, mobile euthanasia clinics and the Groningen protocol - which, while not strictly lawful, seeks to legitimise euthanasia for disabled children - have not surprisingly led to deep disquiet, as have Belgian accounts of organs being harvested from euthanasia patients and 32% of all euthanasia deaths being ‘without consent’. When we consider the allegations emerging from the Dignitas assisted suicide facility in Switzerland - body bags in elevators, cremation urns dumped in Lake Zurich, deaths in car parks and the flogging of deceased foreigners’ personal effects -  it is understandable that legislators are hesitating to go down that road.

More moderate campaigning groups like Dignity in Dying (the former Voluntary Euthanasia Society) emphasise the need for ‘robust safeguards’ and talk only of ‘voluntary’ euthanasia for ‘mentally competent adults’ with less than a year to live. But there are a growing number of other groups with more radical agendas - for example the Society for Old Age Rational Suicide (SOARS), Friends at the End (FATE) and Exit International. The reality is that once a ‘right’ to assisted suicide or euthanasia is legalised for restricted groups there will be inevitable incremental extension to others through the application of case law in ‘hard cases’. Even DiD’s ‘modest’ proposals have been repeatedly rejected by British Parliaments.

The current number of British people travelling abroad to commit assisted suicide is small (some 200 in ten years). But according to a House of Lords enquiry, with an ‘Oregon’ law we would have 1,200 deaths a year and with a ‘Dutch’ law 13,000.

Our present law with its blanket prohibitions is clear and right and does not need changing. The penalties it holds in reserve act as a strong deterrent to those with a personal interest in the death of another. At the same time it gives welcome discretion to prosecutors and judges to exercise compassion in hard cases.

Persistent requests for euthanasia are extremely rare if people are properly cared for, so our priority must be to ensure that good care addressing people's physical, psychological, social and spiritual needs is accessible to all.

Response

Under an assisted dying law, older people and people with disabilities could not access assistance unless they were both terminally ill and mentally competent. Since Oregon legalised assisted dying in 1997, there is no evidence that these groups feel devalued or pressurised to die and they are actually  underrepresented in the number of assisted deaths.

In the UK, polls indicate that 75% of people with a disability and 30- 40% of doctors support assisted dying. Given that doctors who oppose assisted dying would not have to be involved, they should not decide whether the law should change: this is an issue for society as a whole.

Peter misrepresents the impact of legalising assistance to die. To address a couple of his claims: assisted deaths in Oregon have increased from 16 to 78 per year over 15 years, with figures consistent since 2008. The implied link between Dutch law with continuous deep sedation (CDS) and euthanising disabled children is false: 18.7% of UK doctors attending a dying patient report using CDS and the Groningen Protocol reflects practice with severely ill newborn babies across Europe: 83% of UK, 89% of Dutch and 87% of French physicians reported administering sedatives even at the risk of death.

The numbers travelling to Switzerland are low because the process is expensive and onerous – making it deeply inequitable – but these figures are only part of the picture. Others end their lives at home, with around 10% of suicides involving people who are terminally or chronically ill. Others ask loved ones to help them die. Such deaths occur without any checks on the motivations of the deceased or their assistor until after the death has occurred.

Peter claims that legalising assisted dying will lead to “inevitable incremental extension …[through] case law”. There is no reason to suppose this is true: British judges have consistently said such matters are for Parliament and assisted dying has been legal for fifteen years in Oregon with no attempts to widen eligibility.

My views would change if the evidence showed assisted dying was dangerous. I ask Peter what would change his mind? I suspect his opposition is faith-based and immutable, which explains why his argument relies on implication and misrepresentation.

Response

Sarah employs the specious euphemism ‘assisted dying’, a term which which has no meaning in law and which she fails to define. She then appeals to uncited ‘independent academic research’ to contradict the documented incremental extension that I have already described in every jurisdiction that has legalised assisted suicide or euthanasia.

The ‘strict safeguards’ she suggests are essentially those which have already repeatedly been rejected by British legislatures as being unsafe. Her new proposed draft bill, backed by the APPGCEL  (the Parliamentary wing of DiD), follows the recommendations of the Falconer Commission, a private enquiry part-financed by Terry Pratchett, one of DiD’s trustees, chaired by a former Lord Chancellor who is a well-known advocate for relaxing the law and composed almost exclusively of celebrity members of the establishment who share her views. She spends over one third of her opening argument outlining a single ‘hard case’ in highly emotive terms but fails to mention that the overwhelming majority of people with cancer or other terminal illnesses like motor neurone disease do not want euthanasia or assisted suicide.

We all deeply empathise with people who, as a result of substandard care or for personal reasons, feel that their lives are no longer worth living. But the key question is whether we should change the law for this small desperate and determined group. There are almost 500,000 deaths in England and Wales annually, yet the tiny trickle of highly publicised cases travelling to Dignitas in Switzerland to end their lives numbers just 15-20 per year and shows no sign of increasing.

Sarah’s proposals appear modest but there is a profound logical inconsistency in the fact that her two key arguments, autonomy and preventing suffering, apply equally to those who are not terminally ill, mentally competent adults. Those with chronic disease and disability, people with mental incapacity and children also fall within their boundaries.  This means that her ‘modest’ proposals already contain the seeds of extension and we would inevitably see further hard cases brought under equality law to broaden them if they were ever implemented.

Our current law is fit for purpose, combining strong deterrents to abuse whilst allowing judicial and prosecutorial discretion in hard cases. It doesn’t need changing.

Conclusion

Peter understands what I mean by assisted dying for terminally ill, mentally competent adults, as do the public and decision makers, so getting fixated on the language in order to detract from the real issue is not helpful.  Once assisted dying is legalised, which it certainly will be, it will have a legal definition.

He then ties himself up in knots trying to discredit the attempts to find a safe and acceptable answer to the escalating problem of suffering caused by a lack of choice and control for patients facing the end of their lives.  While he is seemingly happy to ignore the suffering of the ‘tiny trickle’ of people travelling to Dignitas, I am horrified that this year alone 35 seriously ill Britons have been forced to travel to Switzerland in order to reduce their suffering, perhaps alone and almost certainly before they would have wanted to die when, as we often hear from loved ones, they would have much preferred to die at home.

Apart from these 35 and the 217 Britons who have died in this way in the last ten years, it is conservatively estimated that ten percent of suicides in this country are by seriously ill people who, under the law we propose, might otherwise be able to have a safeguarded assisted death surrounded by their loved ones.  There are also an estimated 1,000 cases of voluntary euthanasia by doctors each year, outside the current law and without regulation.  Yet Peter thinks that a law which allows the suffering of well in excess of 1,500 people this year is ‘fit for purpose’.

I find it abhorrent that our decision makers turn a blind eye to this level of suffering as well as the untold mental anguish the lack of choice at the end of life forces upon both those who assist loved ones to die illegally and those who are worried about the kind of death they might have in the absence of reform.

Peter’s response appears to be to let the small numbers of people who would benefit from assisted dying suffer unbearably and against their wishes and close his mind to the idea that the current law is not fit for purpose fifty years on and that we could do better for dying Britons.

There is undeniably a problem with the current law which forces dying adults to make desperate choices and to ask their loved ones and medical professionals to be complicit in these often unlawful decisions.  My response is to work with likeminded parliamentary colleagues and experts in the field to create the safest and most appropriate law for this country - a law similar to that which has been working safely in Oregon for 15 years and which will offer better choice and better protection both to people suffering and to those who have to watch their loved ones suffer at the end of life.

Conclusion

Sarah suggests that allowing assisted suicide for mentally competent, terminally ill adults would not endanger disabled people, but many disabled people are terminally ill and most terminally ill people are also disabled. A Comres poll last year found that 70% of disabled people were concerned that a change in the law to allow assisted suicide would lead to pressure being placed on disabled people to end their lives prematurely. Over one in three (35%) believed any such move would place that sort of pressure on them personally.

Dignity in Dying also employs an elastic definition for ‘terminally ill’, championing as cause celebre Debbie Purdy, a disabled person with multiple sclerosis with a life expectancy running to several decades, and including people who would only die within a year if all treatment was withdrawn.

Incremental extension in euthanasia in the Netherlands is clear – from 2006 to 2011 there has been a steady increase in numbers each year with successive annual deaths at 1923, 2120, 2331, 2636, 3136 and 3695. In addition euthanasia for people with early dementia doubled to 49 last year and 13 psychiatric patients were euthanised, an increase of over 500% on the two reported in 2010.

To claim that more people are receiving continuous deep sedation (CDS) in the UK than the Netherlands is not to compare like with like. In the UK, dying patients are given small doses of benzodiazepine drugs to relieve anxiety. In the Netherlands CDS means large doses of sedatives to render the patient unconscious along with withdrawal of fluids with the explicit aim of ending life through induced coma and dehydration.

Only two US states, Oregon and Washington, have legalised assisted suicide following referenda. But on every one of over 120 occasions when a Bill has been brought to a US state parliament it has been rejected. US legislators are not impressed with the Oregon model. In Oregon one in three patients choosing assisted suicide gives not wanting to be a burden as their main reason. One in six has untreated depression, but less than one in twenty sees a psychiatrist. Palliative care training and provision is rudimentary compared with the UK. The steady rise in the number of Oregon deaths, the short span of doctor-patient relationships and the presence of multiple prescribing are more worrying features. In addition a small US state with private healthcare is no model for what would happen in the UK with its huge debts, escalating health costs, budget cuts, failing levels of care and growing incidence of elder abuse.

Our current law, with the stiff penalties it holds in reserve for would-be abusers, combines strong deterrence with discretion, mercy and compassion. It does not need changing.