Update on British Debate in Parliment
The right to die for people who are terminally ill

Dr Irengbam Mohendra Singh *

Houses of Parliament in London by the Thames River, with the Big Ben clock Tower at the back

"Death with Dignity" is a movement that promotes one's ability to die on your own terms, when one is terminally ill, such as with cancer, or 'locked-in syndrome' (LIS) in which patient is aware but cannot move or communicate verbally, due to paralysis of all voluntary muscles in the body except for eye movements and blinking.

LIS could be due to motor neurone disease as in the case of Professor Stephen Hawking, or due to brain injury as in the case of Christopher Reeve who played the Superman. It can also happen in patients with Multiple Sclerosis or Brain stem stroke.

Death with Dignity or Assisted death or Assisted suicide is legal in Switzerland, the Netherlands, Belgium, Luxemburg, in a few states like Oregon in the US, Canada, Colombia and Victoria in Australia.

In the UK, following an unsuccessful case of a man who was quadriplegic as a result of stroke in June 2005, and who wanted assisted suicide – British MP Lord Falconer brought in a controversial parliamentary bill for Assisted Dying on July 18 2014 to the House of Lords, for a second reading.

"Don't' mourn for me – I'm already dead". This was his last words to his near and dear ones. The man was Tony Nicklinson who died, aged 58, on August 22 2012 at his home in Wiltshire, South England.

A few years ago I wrote about DIGNITAS in Zurich, Switzerland, where one can go and end one's intolerable life, with a fee. The only condition there is that the dying person must be able to drink himself the poison unassisted from a glass or through a straw.

At the Parliament Terrace Bar for MPs, author with Bradford MP Jerry Sutcliffe & friend Omar Khan.
Westminster Bridge over the Thames River and The London Eye - the world's largest cantilevered viewing wheel in the background.

Tony had a problem. He could not do that because he was paralysed from neck downwards and thus was not eligible for Dignitas. The case started nine years ago in June 2005 and it lasted seven years until he died from pneumonia. Though his mind retained its faculty he was unable to speak or move any part of his body except his head and eyes. He could only communicate via letters on Perspex board, and a computer system that detected his eye movements and turned them into words.

Tony, a former rugby player and civil engineer was cared by his wife and two teenage daughters after spending two and half years in hospital undergoing treatment. For the past seven years Tony had wanted more than anything to end his life.

Few months after the stroke he made it known to his family that he did not want to live in that state anymore. He was distraught as he had no privacy and dignity left. The severity of his disability put up a barrier and made him harder to get to.

Assisted suicide is illegal in the UK. Supported by his family he engaged a solicitor to put up a legal challenge to the UK's "right-to-die" legislation.

While he was alive he was involved fighting his legal case because of his "eye blink" computer. He wrote lots of articles and had conversations with people online. It gave him hope – hope for the end of his miserable life.

But his case did not go very far. It made it as far as the High Court. Nine judges on the panel instead of the usual five, rejected and dismissed it. They conceded that only Parliament had power to change the law relating to murder.

He became very perturbed. He refused food, fluid and antibiotics. His wife said his eyes glinted when the doctor told him that "if you don't take your antibiotics you'll probably die." He died just six day later.

Since Tony's death, another disabled man Paul (58) from Leeds (next city to mine) - a disabled person due to a car accident in 1990 is pursuing the case. His four limbs are paralysed except some function in his right hand. He is seeking a court declaration that any doctor who killed him would have a defence against any criminal charges.

I have brought up this subject of assisted suicide (different from euthanasia) again, to bring to Manipuri readers what is the latest in the fight for assisted suicide by very disabled people globally and what are the implications in countries where it is legal.

There is extreme frustration on the side of a few disabled, and conscience on the part of the people assisting assisted suicide. As is evident, some of these extremely disabled persons, even though they could administer the lethal drugs themselves they are incapable of obtaining them. Someone has to provide the poisons and how many relatives and friends would be willing to this act of "murder" - call it euthanasia, which is different from assisted dying. It means physician-assisted suicide, like injecting a lethal dose of poison and thus acting directly to end the patient's life.

I agree we all want to die with dignity and most people die with dignity every day. My parents, brothers and sisters died with dignity and loving care in Manipur. Even in a society like in the UK where old people are regarded as a burden to the society by young people, only a few very distressed people want to die. It is indeed a failure of the highly organised Western society to keep with the changing structure of human population of the world, where many people live in health to see their grand children grow up and even see great grandchildren, though at this age invalidity does pop in.

Even in non-religious Britain where 70% of young adults declare to have no religion, Lord Falconer's Bill is a very disturbing one, partly because he wants legislation to allow doctors to kill people or assist people to kill themselves when they are suffering from an incurable disease. Soon it would apply to old and infirm sick people when they feel worthless and unvalued by society and want to die. It may also eventually lead to a 'slippery slope' effect of non-voluntary or even involuntary euthanasia.

By non-voluntary euthanasia I mean euthanasia that is conducted without the explicit consent of the individual concerned, such as when the person is in a persistent vegetative state, or in the case of young children. Involuntary euthanasia is when it is performed against the will of the patient. In both cases, they are not legally cogent.

As a doctor, I know old people often make assisted suicidal noises because of the problems of their health and because how other people see and treat them. Hardly anybody really wants to die. They only feel very sad that they are considered to be a burden to the carers in the family and the society. In the 50 years of caring for old people who were at the end of life in the UK, I have never experienced any family trying to push someone towards an early death.

Some elderly people do have such thoughts because of pensioner poverty, loneliness, long years of illness and their failing powers. Many old people may well feel overwhelmed by sense of rejection which is made worse by physical pain. I have cared for terminally ill cancer patients with a lot of pain needing day and night infusion of morphia and anti-vomiting medications. None has ever expressed their desire to end treatment.

The supporters of Falconer's bill make much of the fact that they only seek assisted suicide only for those young people who have "only six months to live" – a sort of legal sentence – to take the provided fatal drugs by their own choice. I would have thought, the younger the person the more days (six months) they would have liked to live with their near and dear ones.

If the Bill should become an Act when passed by Parliament, it would mean that the British legal system gives these patients the power to kill themselves. This is also to enable competent adults who are terminally ill to be provided at their request, with specified assistance to end their own life with the assistance of doctors. For some, who have families, but do not care enough whether they live or die, and others, who have no families at all, they will be compelled to end their life.

On its second hearing in parliament on Friday July 18 2014, it was debated by peers for several hours before it was sent to the Select Committee of the whole House for examination. The first reading took place on May 15 2014.

In this regard, Lord Carey, the former Archbishop of Canterbury (Head of the Church of England) wrote dramatically in The Daily Mail on July 11 2914, supporting the Bill. He wrote: "Even the most devout believers will find their faith tested by the sight of a dying person in torment – especially when modern medicine could swiftly bring the torment to a merciful end."

If parliament enacts the law, the aim of the Assisted Dying Bill is summarised below: it would result in fewer dying adults and their families, facing unnecessary suffering at the end of their lives – subject to strict upfront safeguards, as assessed by two doctors. It would not legalise 'voluntary euthanasia', where a doctor directly administers life-ending medication. It would protect anyone who does not have a terminal illness, including elderly and disabled people.

Above all, the supporters claim it would give dying adults peace of mind if the choice for assisted dying is available when their suffering becomes too great to bear in their final months of life. On the other hand, without a change in the law, terminally ill people [those who can afford] would be travelling to Dignitas in Switzerland to die, where it has been working satisfactorily since 1942.

The debate in the UK Parliament was based on the Oregon legislation, which included a 'six month criterion' as one of its 'safeguards' in which the right-to-die legislation only permits an assisted death for those who are "terminally ill" and for whom two doctors have given a life expectancy prognosis of six months.

The fresh debate in the House of Commons in Parliament in September 2015, known as Rob Morris Bill, was decisively rejected. Doctors argued that they cannot reliably give a sufficiently accurate prognosis of when such a patient will die. In January 2016, Dr Katherine Sleeman (Clinical lecturer in Palliative Care) successfully argued against changing the law saying that "… as a doctor I know that it is pretty much impossible to determine prognosis with any degree of accuracy …"

That this issue of not being possible to give accurate life expectancy estimates, led doctors in Scotland to remove the definition of "terminal illness" in certain state benefits. A report that recommends ways to improve legal definition and guidance to healthcare professionals in England and Wales, was published by the All Party Parliamentary Group (APPG) on terminal illness in July 2019.

It was debated that, in people with conditions, such as locked-in syndrome (Tony Nicklinson), Multiple sclerosis (Debbi Purdy), multiple system atrophy (Omid), and incurable pain (Paul Limb), who wanted to have an assisted death would not be helped by legislation limiting this to those with 6 months of dying.

The British Medical Association (BMJ) pronounced it was also against the right to die in 2016. The association's current policy, published on June 25 2019, reaffirmed what was agreed at the 2016 annual meeting. This is to oppose legalised physician assisted suicide for terminally ill people (BMJ 2019; 365:14398).

There are many other situations which fall outside 6 month criterion and with prolonged suffering, when a few patients request a medically assisted death. A special problem is for many people with dementia – now recognised as a "terminal illness", which can last between 8 to 10 years from when symptoms first begin until death.

The Alzheimer's Society in a study in 2012, recommends that 'there should be greater recognition of dementia as a terminal illness. The National Council for Palliative Care, also points out that "despite there being no cure, only 18% of people realise dementia is a terminal illness. "Cruelly, the time a dementia sufferer might get a 6 month life expectancy prognosis, they are very unlikely to have the necessary mental capacity to request, and be accepted for, assisted dying."

Alzheimer's disease is the main cause of dementia. It is a leading cause of death in women in England (BMJ. July 14 2017). It is reported that dementia is now recognised as the leading cause of death in England and Wales. In 2018, one in 10 deaths in England and Wales were due to dementia. Dementia itself is not the cause of death like cancer. Most of them die with bronchopneumonia.

Many people oppose the law to assisted dying because they have concerns about disabled people and 'vulnerable people', who may be persuaded by others to request assisted dying. They argue that the law may be the start of a 'slippery slope of gradual extensions of the law'. And the slippery slope effect will lead to non-voluntary (when the explicit consent of the individual concerned, such as one in persistent vegetative state or, young children), and even involuntary euthanasia (performed against the will of the patient).

Opinion polls in the UK, show reduced public support for assisted dying in "non-terminal cases", but there is a strong support for it in a broad definition of terminal illness in some situations. An opinion poll conducted by the National Centre for Social Research, involving 2,500 respondents, published on September 6 2019, showed that 93% of the UK population support assisted dying. It is good to realise that public opinion does not always help in framing laws.

In conclusion, support for 'peoples' 'right to die' in Britain, has so far been rejected in the British Parliament, partly because of the reluctance to engage by the medical profession.

My experienced feeling as a doctor, who practised in England for 50 years, tells me that, with tremendous advances in medicine no such terminally ill people should be assisted to die by doctors. Rather, they should be cared for, even they have only 6 months to live. I found such patents appreciating to see the next morning.

Besides, I believe doctors who are involved in assisted death, are often likely to be in the firing line for murder, brought about by disgruntled relatives, as evidenced by a report published in The Daily Telegraph on February 1 2020.

Two doctors in Ghent in Belgium, were cleared on January 31 2020, of the charge of murder of a 38-year-old woman named Tine Nys, who died on April 27 2010. They were the first doctors to go on trial for euthanasia in Belgium since it legalised the practice in 2002. The accused were Ms Nys's doctor and a psychiatrist, who gave the lethal injection at the request of the patient to end her life.

Her parents and sisters, who were present at her death, later claimed that Tine Nys had not received sufficient advice, and that doctors had not tried to treat her mental illness. The procedure was carried out in an amateurish manner and that Ms Nys did not have an incurable mental disorder, a key condition for granting euthanasia.

In Holland, where euthanasia is also legal since 2002, a Dutch court cleared a doctor on September 11 2019. He was accused of failing to secure proper consent from a woman with Alzheimer's disease. The 74-year-old woman who died in 2016, had expressed her desire to be euthanised and also to choose the right time. The court ruled that the doctor acted in the interest of the patient.

Remember "Law is an Ass" (Charles Dickens, Oliver Twist).