What appears to be a condition with no light at the end of the tunnel, can sometimes reverse as is shown to two stories which the Sunday Times published on 17/7/11. The stories highlight how little medical understanding of minimal consciousness there is.

The newspaper reported the very moving story of Martin Pitorius, who was considered without hope of recovery. He was subjected to terrible abuse from his carers. He was fully aware but unable to communicate. Then, with the help of a very enlightened physiotherapist, he started to improve and learn to communicate again. Mr Pitorius has written a book about his experience called ‘Ghost Boy’. He remains very optimistic about life. He married two years ago, which is surely a sign of that positive attitude.

In the same issue, the Sunday Times reported the story of Nikki Kenward, who has also made a remarkable recovery from near total paralysis in which all she could do was wink one eye. Ms Kenward has decided to protest outside the court at today’s hearing. She feels strongly that if the court decides that M should be killed, it will open the flood gates and will people who are fully conscious but unable to communicate will be at great risk. The ProLife Alliance agrees.

By contrast, in today’s Times (19/7/11), Tony Nicklinson says ‘For pity’s sake let my wife kill me’. The tone of the article is that his life is worthless. Mr Nicklinson’s case is different from M, Nikki Kenward and Martin Pitorius as he has always been able to communicate, even though with the aid of electronic devices. Mr Nicklinson is clearly in a very depressed state.

It is interesting to contrast the attitudes of Mr Nicklinson and Mr Pitorius. One seeks help to die, the other communicates far and wide, starts his own business, gets a dog and finds a wife. The ProLife Alliance agrees that Mr Nicklinson seriously needs help, but he appears to be looking in all the wrong places and finding only those will reinforce his negative state of mind, such as the pessimistic proponents of euthanasia and assisted suicide.

In the programme ‘Choosing to Die’, although there were two deaths, only one was shown (that of Peter Smedley). The other man, Andrew Colgan, suffered a tragic death the details of which were not mentioned at all in the programme. Clearly it was too terrible to show and would have been detrimental to the bias of the programme. This demonstrates the lack of objectivity of the programme makers and the promotional nature of the programme. How right we were to object so strongly to the showing of such a biased programme.

For our previous comment on this programme and details of how to complain to the BBC, click on this link.

“Don’t publish photographs or suicide notes. Don’t report specific details of the method used. Don’t give simplistic reasons. Don’t glorify or sensationalize suicide. Refer to suicide as a completed suicide, not a successful one. Present only relevant data, on the inside pages. Highlight alternatives to suicide. Provide information on help lines and community resources. Publicize risk indicators and warning signs.”

The programme contained emotive music (a composer was named in the credits), beautiful Alpine scenery with only a passing mention that Dignitas had been banished to an industrial estate after previous neighbours complained, picturesque snow falling.

The documentary breached the BBC’s own guidelines which call for ‘great sensitivity’ about suicide: “Factual reporting and fictional portrayal of suicide, attempted suicide and self-harm have the potential to make such actions appear possible, and even appropriate, to the vulnerable.” It ignored, or did not care about, these well-known copycat suicide risks. It used words like “bravest”, “in the arms of his wife”, “he died singing” on the one side, and talked about unendurable suffering and “undignified ending” on the other. Even the taxi driver who had decided to go on living in a hospice was in favour of changing the law, though this is not at all representative of those in his condition. The whole programme was relentlessly pessimistic about the lives of those with debilitating conditions, which is as insulting to them as it is untruthful.

This was the fifth programme advertising suicide that the BBC has made recently: “I’ll Die When I Choose”, 8 December 2008; A Short Stay in Switzerland”, January 2009; “Shaking hands with death”, 1 February 2010; “Inside Out”, BBC West Midlands, 15 February 2010; these programmes are often shown more than once. Presenters consistently give a sympathetic platform to pro-suicide campaigners.

It was notable that the BBC, as the euthanasia activists want, used the term “assisted dying” instead of the accurate “suicide”. This reminds us of the Dutch habit of describing the unrequested intentional killing of patients, for which the ordinary word is “murder”, as “not necessarily voluntary end-of-life decisions”.

The other side of the picture was ignored. Where are the programmes showing the cogent arguments that have persuaded legislatures in the UK and internationally that the law cannot safely be changed? Where are the life-affirming stories of handicapped people who have battled suicidal thoughts and now live happy fulfilling lives? Recent research has shown that such stories have a positive influence.

This was a frightening programme for the vulnerable, and a shameful day for the BBC. Please complain via the BBC website, telephone BBC Audience Services on 03700 100 222 or write to BBC Complaints, PO Box 1922, Darlington, DL3 0UR.

Professor Keown spoke of unmet needs for care and pain relief, and argued that the ethical duty to provide it was clear under any philosophical system, whether Utilitarianism, Principlism (the principles being autonomy, non-maleficence, beneficence, and justice) or Natural Law.

He cited the 2010 Montreal Declaration on inadequate pain management, and various agreements outlawing torture, in claiming that there is an international human right to preventative, curative and palliative health care.

He said that under British civil law, and that of the Commonwealth and USA, when a patient was unnecessarily left in pain, in theory an action for negligence would lie, since a breach of a duty of care causing loss or harm could be proved, although he knew of no actual case being brought. This could be against a doctor, or vicariously, and possibly directly, against a hospital or care provider.

In criminal law, it was clearly established by Mr. Justice Devlin’s clear exposition in the Bodkin Adams case 1957 that a doctor may legitimately give all necessary pain relief even if, as an unintended but unavoidable side effect, it shortens life. (Oncologists now believe that properly administered relief does not in fact usually do that.) In the case of Dr. Nigel Cox, convicted of attempted murder of a patient in 1992, the judge went further and stated there was not just a permission but a duty to alleviate pain.

For those with a duty of care to children and young people, to the mentally incompetent and even to animals, wilful neglect is a statutory criminal offence. Professor Keown suggested that there was a need for these provisions to be extended so that a person who ill treats or wilfully neglects any person in his care commits a statutory offence.

It was generally agreed that universal access to the best palliative care, not only for physical but for mental and spiritual needs, in all kinds of suffering, is the best answer to requests for any form of euthanasia, and should be available as soon as needed, not just when death is imminent.

The same campaigners, using money from supporters including Terry Pratchett, to set up a private consultation headed by Lord Falconer, a known supporter of assisted dying. Although doctors and groups representing the disabled are overwhelmingly opposed to assisted dying, the members include an individual doctor and disabled person who are known to be in favour.

The Prolife Alliance, together with many other reputable organisations and experts, does not intend to take part in this charade. Please see attached link to Dr Peter Saunders‘ blog in which he goes into some detail regarding the format of the commission.

If tobacco manufacturers paid for a “commission” composed of smokers and people who advertised cigarettes or had tried to encourage smoking, would anyone think it possible that, whatever evidence was presented, there would be any chance of them recommending a smoking ban? We would laugh if they called themselves “an independent body” and boasted “an open mind”. If, in addition, a genuine Royal Commission, a Parliamentary Committee, and searching debates in UK legislative bodies had recently examined the subject in depth and decided against them, we would think their attempt impertinent as well as unnecessary. But this is just what Lord Falconer’s so-called Commission on Assisted Dying has done.

Even the name betrays their bias. They intend to discuss suicide and euthanasia, and are using a euphemism for intentional killing.

Above all, it is NOT good, as they allege, to keep talking about it. The constant suggestion frightens the vulnerable. Recent research by the disability group Scope, not a pro-life organisation, found that 77% of disabled people aged 18-24 and 71% of disabled people aged 25-34 are “concerned about pressure being placed on other disabled people to end their lives prematurely ….. if there were a change in the law on assisted suicide” and many were afraid for themselves.

Dignity in Dying, which used to be called the Voluntary Euthanasia Society, has launched a new website and “helpline” called “Compassion in Dying” to “make sure that people … can easily access information about their rights and choices for care and treatment at the end of life”. It is illegal to encourage suicide, while genuine care and treatment are given by palliative care doctors and hospice workers, who are strongly against a change in the law. The pro-euthanasiasts who are so determined to be in control of their own lives and deaths, do not seem very compassionate regarding the feelings of the disabled and chronically ill.

The main right-wing and left-wing parties had campaigned against both initiatives, so the overwhelming vote against them on May 15th , although sad, is unsurprising.

In theory, under Swiss law it is legal for anyone other than a physician to assist a person to commit suicide, as long as the helper is not profiting from the death. Assistance can only take a passive form; for example it is legal to procure lethal medication for another person but not to administer
it.

The federal government has discussed making sure that assisted suicide is used only as a last resort by the terminally ill, and limiting suicide tourism. but there are problems about definitions. Terminal? Chronic? Physical only or psychiatric? (The World Health Organisation estimates that some form of psychiatric disorder is present in 90 per cent of people who commit suicide, of which depression accounts for 60 per cent.)

The Italian lawyer Minelli, who runs Dignitas, has admitted helping psychiatrically ill people to kill themselves, and wants assisted suicide to be legal without any conditions at all. He charges around £7000 and has spoken enthusiastically about saving the NHS money by not having to care for the mentally and physically ill.

In fact the number of Britons killing themselves at Dignitas has been small, only an average of 16 a year, nothing like the large numbers which a House of Lords committee estimated would die in the UK if the Dutch or Oregon rules respectively were adopted. Other Swiss euthanasia groups do not help non-residents to commit suicide.

The ProLife Alliance points out however that when a country’s laws once allow assisted suicide, there is no logical point at which to place the limits.

A recent survey shows that disabled people are frightened by proposals to change the law here, demonstrating how vital that law is to protect the vulnerable, and how important it is that it should be enforced.

She told the meeting that the proposals in Lord Joffe’s first bill to allow assisted suicide for, among others, the disabled, had at a stroke seriously harmed their quest for equality. “Disabled people, many of whom have progressive or terminal conditions, are becoming increasingly worried about a reform that is supposed to help them”, Lady Campbell said. “Research in Holland has shown that what began as a very unusual end-of-life choice for those in the last few weeks of a terminal illness soon became a routine option for disabled people without a terminal diagnosis. Working alongside disabled people and listening to their stories, I understand why they fear the slippery slope.” She added that disabled people know that assisted suicide is not about free choice and self-determination, but undermines patient control, as in Oregon where the number of assisted suicides has risen fourfold and many who died were suffering from depression. This chimes with recent research by the disability group Scope, not a pro-life organisation, which found that “77% of disabled people aged 18-24 and 71% of disabled people aged 25-34 are concerned about pressure being placed on other disabled people to end their lives prematurely…..if there were a change in the law on assisted suicide”.

The guest speaker at the meeting was Dr Xavier Mirabel, president of the Alliance pour les Droits de la Vie, who had orchestrated the successful resistance against attempts to legalise assisted suicide in France for people with disabilities, the terminally ill and others with chronic medical conditions. He spoke in English with only occasional help from an interpreter. He told the meeting how the usual emotive cases and slanted surveys from the pro-euthanasiasts had been countered by a well thought-out system of informing members of the Senate and the general public, who now understand the risk of abuse from a euthanasia law and the importance of improved palliative care. The culminating stunt involved hundreds of pro-life activists wearing shrouds and lying on the ground as if they were dead outside the Palais du Luxembourg, while the figure of Death the Grim Reaper walked among them.

Professor the Baroness Finlay, the palliative care expert, agreed with Dr Mirabel that virtually always when people continued to wish to die, not as much had been done for them as was possible to save them from suffering.

It was emphasised that we must not just react to initiatives by pro-death groups, but keep up a continual campaign to bring before the public the truth of the dangers of changing the law.

At London’s Royal Hospital for Neurodisability (RHN), Mrs. McNeilly was already using a system called Eyegaze, where an infra-red camera set in the computer screen followed her eye movements, allowing her to operate an onscreen keyboard spelling out messages which are then spoken by a disembodied voice.

For the music making, she wore a cap lined with electrodes sensitive enough to detect patterns in her brain waves, which altered according to what she saw on screen. By focusing on different icons she could select strings or bass and by varying the intensity of her gaze she could cause the music to swell or diminish.

When asked about her feelings she said “We have a saying in Spain: God squeezes but he doesn’t choke.”

A person with locked-in syndrome is fully conscious, but cannot move or communicate, except sometimes through eye movements or blinking. The most common cause is a stroke, and the sufferer may be misdiagnosed as being in a coma or what is called (offensively, since no human being should be compared to a vegetable) a persistent vegetative state.

Probably most people feel that they would rather die than be in such a condition, but research shows otherwise. Members of the French Association for Locked in Syndrome, who had regained varying amounts of muscle control, were questioned by doctors from the University Hospital of Liege, Belgium. A surprising 72% of the patients declared that they were happy, and only a few, of whom most blamed incapacities which could be remedied, were very unhappy. Similar results have been found in a British hospital for people entirely paralysed apart from head movements. A major factor was the ability to communicate.

The study found that patients who had suffered for longer, and who had thus had time to come to terms with their changed lives, were more likely to be happy. This agrees with the well-established fact that even after an extreme change for good or for ill, by a year later most people are about as happy as they were before.

A spokesman for the ProLife Alliance said that the dangers of undiagnosed Locked-in Syndrome are obvious. Imagine lying there helpless while well-meaning people discuss whether to end your life, as happened in the case of Richard Rudd. Or hearing doctors say that your case is hopeless, like Kerry Pink. The mere idea is horrifying, but cases like these show that with optimism and positive practical help.there is always a better solution than that proposed by pessimistic pro-euthanasiasts.

We must congratulate those remarkable scientists and doctors who have made such strides in helping people when so many are prepared to do nothing but advocate death.

Michael Irwin, who was struck off as a doctor in 2005, used to be president of the Voluntary Euthanasia Society before it changed its name to Dignity in Dying, and keeps trying, unsuccessfully so far, in spite of being involved in nine deaths, to become a martyr to the pro-euthanasia cause.

Nan Maitland , who though arthritic was still active, said she wished to escape the ‘long period of decline, sometimes called “prolonged dwindling”, that so many people unfortunately experience before they die’.

So often it seems that euthanasia activists have been frightened by seeing those they love suffering, or deteriorating in a way that is painful not for them but for their families. They become determined to frighten others. But there is evidence that the elderly are not only much healthier for much longer than used to be possible, but that they tend to be happier and more optimistic than younger age groups. A ski resort in the USA offered free ski-lift passes for over-seventies, and had so much take-up that they had to make it over-seventyfives the next year.

The slippery slope for Britons is noticeable: first it was terminally ill people with cancer or motor neurone disease, then those with progressive, but not necessarily fatal conditions like multiple sclerosis, and then those with severe non-fatal conditions like the young man paralysed in a games accident, and now a woman in reasonably good health who was just frightened of an imaginary future.

She is not the first. Minelli, who runs Dignitas, seems quite happy to provide death for anyone, including a mentally fragile brother and sister whom he callously said should never have been born. A healthy wife died with her ill husband under Belgian law recently. The conductor Sir Edward Downes and his wife were a similar case. Suicides in opera, the last acts of Aida, or The Flying Dutchman, or the Ring Cycle, accompanied by wonderful music, can be moving and beautiful, but in reality it is a miserable end to any life and often leaves survivors unhappy and disturbed. (Though one cannot help noticing that while people who have to have a family pet put down, are always in floods of tears, this does not seem to apply to those who help friends and family to kill themselves so publicly in Zurich.)

One factor in the non-prosecution of these cases is that the dead have clearly not been under any pressure. They are such firm-minded people themselves that they simply cannot grasp how any relaxation of the law would put less assertive and confident elderly or handicapped people at risk.

Several thousand people in the UK, very sadly, manage to end their own lives every year without paying an Italian lawyer to help them. The overwhelming majority die naturally without prolonged disability or pain. Only a tiny percentage go to Dignitas, where a suicide is said to cost £10,000. In effect they are buying publicity, which no one would grudge them if it were not so dangerous for so many vulnerable people.

Even without the concern which many doctors now have about diagnosing death in such circumstances, this has an unpleasant feel of “their lives may not be worth anything, but at least we can use them for spare parts”.

The doctors showed that about 20% of the 705 people who died through euthanasia (officially) in 2008 were suffering from neuromuscular disorders. Their organs were likely to be of relatively high quality for transplanting to other patients.

There is a shortage of usable organs for transplantation in Belgium, as in the UK and elsewhere.

Euthanasia for organ transplant is a bit different from normal euthanasia, the doctors say, because they prefer that patients die in hospital rather than at home. (So much, one might say, for the pro-euthanasiasts’ argument that it allows people to end their lives at home surrounded by their family.)

The protocol the doctors have developed is intended to sound reassuring. There has to be a strict separation between the euthanasia request, the euthanasia procedure, and the organ procurement. The donor and his or her relatives have to consent. The euthanasia is performed by a neurologist or psychiatrist and two house physicians. Organ retrieval begins after clinical diagnosis of death by the three physicians. And, of course, they add, staff participation is voluntary.

It would be naive to think that any of these guidelines would continue to be followed strictly, if it became convenient for them to be ignored. When an organ is urgently needed, and harvesting spare parts from the euthanased has become normal, what safeguards would protect the vulnerable?