Doctors opposed to what is termed physician-assisted suicide argue it would lead to pressure on vulnerable people not to be a burden to their carers, and they are rallying patients who have suffered serious degenerative illness in support of their argument.
David Williams, 51, a father of three from Cardiff, is backing the campaign. He was a 35-year-old successful service manager for a car dealership when he began suffering severe back pain, and was eventually diagnosed with a tumour on the spine. Williams was told he would be in a wheelchair by 37 and most likely dead by the time he was 40. He had surgery just as his third child was born.
Bedridden, in terrible pain and fearful of the distress he was causing his family, Williams said if doctor-assisted suicide had been available he would have considered it 'purely on the basis of the suffering my wife was going through'.
Williams was eventually admitted to a hospice in nearby Penarth and treated by Baroness (Ilora) Finlay, the renowned expert in end-of-life care. His pain was made bearable and the cancer went into remission. Williams now thinks he was probably depressed by his illness: 'I had a job that a lot of people would die for: I had a nice house and three lovely children, fantastic wife and everything was great. And then it all went wrong. Things do flash by you at that point.'
Williams has another reason to be glad he is alive. A few years after his recovery, his wife contracted liver cancer and died suddenly. Had he opted for suicide, he points out, his children would have been orphaned.
'I used to look at the baby in the cot and think "I can't do this." I look at him now, and I can see me in him: and I just thank God I didn't do it,' he said. 'I am more than grateful that I am here for [the children] now.'
Williams's cancer recently returned and he is in a wheelchair. He is supporting the pressure group Care Not Killing, of which Finlay is a member, and vehemently opposes the bill: 'I do worry if they pass this law that it would be used for the wrong reasons. People would be put under pressure because when you are that ill, you just want to do whatever is the easiest thing.'
The private member's bill, drawn up by Lord Joffe, has its second reading in the Lords on Friday. It is unlikely to pass without government support. However both supporters and opponents believe that if it fails it will be reintroduced to the Commons in a similar form, and possibly with greater momentum.
David Cameron, the Tory leader, has written to opponents pledging to vote against the bill on the grounds that 'terminally ill people may feel pressurised into ending their lives'.
Supporters of the bill argue that in the US state of Oregon physician-assisted suicide has been introduced without problems. Writing in The Observer today, the ethics expert Baroness Warnock argues that while assisted suicide might not be needed if palliative care were perfect, 'this is a distant prospect and I do not believe that everyone would prefer palliative care. There are those for whom it would be a nightmare and who would prefer death to the drawn-out process of being kept alive and conscious'.
Supporters cite the case of Diane Pretty, the motor neurone disease sufferer who went to court seeking the right to die at a time of her choosing rather than in what she feared would be a distressing manner as the disease advanced.
However Peter Saunders, a general surgeon and campaign director of Care Not Killing, says while cases like Pretty's are high profile, Williams's experience may be more common.
'Suicidal thoughts are not uncommon at the time of first diagnosis, and before people have had the opportunity not just to hear about what palliative care is offered but to experience it,' he said. The minority who might want to die, he said, did not have the right to a change in the law that could put others at risk.
Both euthanasia and assisted suicide are illegal in Ireland. Under the Criminal Law (Suicide) Act 1993, it is an offence to aid, abet, counsel or procure the suicide or attempted suicide of another person.
The maximum penalty for this offence is 14 years in jail. In practice, this criminal prohibition relates to active euthanasia where the person is helped take their own lives.
The law was restated in the case of multiple sclerosis sufferer Marie Fleming, who wanted her partner, Tom Curran, to be able to assist her in her death without fear of prosecution. When the High Court ruled against her she appealed the decision to the Supreme Court, but in April 2013 her legal battle came to an end when it upheld the original ruling.
Ms Fleming passed away on December 20.
While assisted suicide remains a crime in Ireland, it is not illegal to remove life support and other treatment should a person or their next of kin request it.
In many instances, a terminally ill person in extreme pain or distress may express a wish that no so-called ‘heroic efforts’ are made to prolong life. This is sometimes known as passive euthanasia and does not attract any criminal sanction.
Guidelines issued to Irish doctors by the Medical Council are clear, stating they “must not participate in the deliberate killing of a patient by active means”. However, the guidelines also advise physicians: “There is no obligation on you to start or continue a treatment, or artificial nutrition and hydration, that is futile or disproportionately burdensome, even if such treatment may prolong life.”
The absolute prohibition on actively contributing to someone’s death may change as societal mores advance. A Behaviour & Attitudes/Irish Times poll in 2010 showed that 57% of adults believed that doctor-assisted suicide should be legal for terminally ill patients who request it. Given what is happening elsewhere in Europe four years on from that poll, it is likely that this figure would be higher now.
Philosophical principles apart, much of this desire for a more liberal legal regime is predicated on two practical issues. The first is that a number of Irish people who chose to go abroad for assisted suicide expressed regret at the time that they were unable to wait until the very last moment, as they had to be well enough to travel. “I literally have to go before my time,” said one young man who went to Switzerland.
The second is the perception that an unregulated de facto form of euthanasia is practiced every day in Ireland by physicians in hospitals and hospices.
This usually occurs when next of kin permit the physicians to administer ultimately lethal doses of morphine to terminally ill patients in the final stages of their illness.
The dosage often needs to be increased over time for the drug to give the necessary pain relief. For many family members, the experience is harrowing and disconcerting; for others, it is a relief to see their loved ones free of pain.
The moral principle used to underpin this practice is known as ‘double effect’, since the treatment to ease pain has the additional effect of ending the patient’s life.
The principle concerns evaluating the ethical permissibility of acting when a desirable act may cause an undesirable one. It originates in Summa Theologiae, the work of the 13th century philosopher and theologian St. Thomas Aquinas. This set of criteria states that an action having foreseen harmful effects practically inseparable from the good effect is justifiable if:
* The nature of the act is itself good, or at least morally neutral;
* The agent intends the good effect and not the bad either as a means to the good or as an end itself;
* The good effect outweighs the bad in circumstances sufficiently grave to justify causing the bad effect;
* The agent exercises due diligence to minimise harm.
Almost 700 years later, this principle was tested in the famous English case of Dr John Bodkin Adams. He was an Irish-born physician suspected in the murders of up to 163 of his patients. He was tried in 1957 for the murder of one of his patients but controversially acquitted by reason of double effect.
Trial judge Patrick Devlin ruled that causing death through the administration of lethal drugs to a patient, if the intention is solely to alleviate pain, is not murder even if death is a potential or even likely outcome. In other words, forseeability is not the same as intent.
THE principle was restated most recently in Ireland in the wake of the controversy surrounding the death of Savita Halappanar, who died in 2012 at University Hospital Galway after being refused an abortion on ethical grounds.
A statement issued by the Irish Catholic Bishops’ Conference said: “Where a seriously ill pregnant woman needs medical treatment which may put the life of her baby at risk, such treatments are ethically permissible provided every effort has been made to save the life of both the mother and her baby.”
In between the two extremes of active and passive euthanasia lies what is known as continuous sedation at the end of life (CS). This is the practice whereby a physician uses sedatives to reduce or take away a patient’s conscious-ness until death.
The research by philosopher Kasper Raus of Ghent University in Belgium shows that many differences exist between medical practitioners regarding how and how often they perform CS. In a study he conducted, physicians and nurses testified that the use of continuous sedation was facilitated “in cases where a patient has a very limited life expectancy, suffers intensely, makes an explicit request and has family members who can cope with the stress that accompanies sedation”.
However, he concluded that these factors are rarely aligned.
Two studies reported in the Journal of Medical Ethics show that the common concern is the possibility that end-of-life sedation can resemble assisted death.
However, according to the British Medical Journal, there is little evidence that sedation significantly hastens death when doses are carefully matched to symptoms — giving only that amount of a drug necessary to make the patient feel less distressed, and preserving consciousness as far as possible.
A quick way to end pain or an alibi for murder?
Seismic change is taking place in the area of legal killing. Europe Correspondent Ann Cahill charts the latest developments
Dignitas, the euthanasia clinic in Switzerland. Picture: Sebastian Derungs/AFP/Getty
MERCY killing, assisted suicide, euthanasia — death as a side-effect of alleviating pain.
All are legal in the Netherlands, Luxembourg, and Belgium since 2002, with Belgium in particular pushing out the boundaries, allowing people who are suffering from dementia and those who are not terminally ill — including long-term prisoners — to choose to die.
New laws in Belgium allows terminally ill children suffering constant and unbearable pain to die — the first country in the world to remove the age barrier to euthanasia.
The decision must be agreed by the child’s physician and supported by a second independent doctor.
The Netherlands legalised it for those over 12 years of age in 2012 with parental consent, but there are reports that, in specific circumstances, babies and infants have been killed also.
The decision to kill children has breached the final taboo, horrifying people in many countries but voted for by a sizeable majority in both houses of parliament after a lengthy national debate.
So, is a speedy, painless end a way to show love, or a shortcut to infanticide and to eliminating problem people?
The debate, simmering under the surface in many countries, has come to the fore now in Germany and France with both considering legalising euthanasia. The debate has also reopened in Britain.
Four states in the US allow a physician to assist a person to commit suicide.
But in countries such as Ireland, where euthanasia is not even considered an issue, it is nonetheless a reality as medical staff and families have little hesitation in allowing medication to keep ahead of pain until ultimately death is a side effect of keeping a patient comfortable.
The Dutch — never afraid of tackling social issues head on — recognised this 40 years ago when a court ruling on the case of a doctor who helped her mother die agreed that “an earlier death as a side-effect of pain alleviation”, was acceptable.
This ‘passive euthanasia’ is now tacitly accepted, even if unspoken of in most countries where morphine and other drugs that reduce suffering from pain can be given in amounts that eventually end life.
For decades, the idea of euthanasia has been anathema in most societies, linked in people’s minds to the Nazi policy of euthanising those considered to be burden to society.
Germany, ever mindful of its Nazi past, has reopened the euthanasia debate nationally.
Under current German law, an ill person can receive life-shortening, but not lethal drugs by signing a written request. As in most countries, they can ask not to be put on life support machines or be resuscitated if their heart stops.
Two years ago, the German Medical Association lifted its ban on assisted suicide, saying it was up to a doctor’s own conscience what to do if a patient’s suffering was unbearable.
A recent survey said half the population wants this to go further and allow the terminally ill to be helped to take their own lives.
This has resulted in a draft law put forward last autumn that would allow a patient’s doctors, care givers and relatives to help with suicide, but the ban on euthanasia would remain.
The French, too, are turning more in favour of allowing assisted suicide with a poll a few years ago finding that up to 90% believed the law should be liberalised.
Last November, two elderly couples committed suicide in Paris, demanding the right “to die with dignity” and reopening the debate after a government report following a six-month study last year recommended that euthanasia continue to be banned.
The European Court of Human Rights has ruled that it is up to each country to decide on its own laws on euthanasia but a report being drafted for the Strasbourg-based Council of Europe to which the Court belongs says the debate on euthanasia has been rekindled because medical advances, especially in technology, enable life to be prolonged often with ongoing and untreatable pain.
It raises questions about the end of life and the dignity of the person, and how democracy, human rights, and the rule of law can be safeguarded while finding a balance between medical and scientific progress and the protection of human beings and human dignity.
They have compiled a series of principles that should apply especially for the medical profession but also for patients and their families, irrespective of whether euthanasia is allowed or not.
It concludes that the patient’s wishes are paramount in situations were euthanasia is permitted.
However, how to ensure this remains the case when a person is not in a position to make their wishes known requires training for health professionals and on-going information for the public generally including on the use of surrogates and advance directives.
The Human Rights Court has dealt with many cases where both the dying and their family believed their fundamental human rights were being violated by their country refusing them the right to assisted suicide.
One landmark decision concerned a woman unable to commit suicide because she was suffering from motor neurone disease and wanted her husband’s help.
The fact that he could be prosecuted for helping her was a violation of her right to life and constituted inhuman and degrading treatment. The court disagreed in April 2002, saying the right to life did not suggest a right to death.
The court also disagreed with a Swiss man who said the fact that the law prevented him getting a drug to kill him without a prescription was a violation of his right to respect for private life.
Many more cases are before the court, each questioning other more diverse aspects of people’s wish to die.
THE modern history of euthanasia begins in a Dutch courtroom in 1973 when a Dutch doctor was accused of killing her terminally ill mother by administering an overdose. The court found her not guilty, accepting her argument that her motivation had been to alleviate her mother’s pain.
This was followed by a decision of the Royal Dutch Medical Association, that the law against euthanasia should remain in place but that combating pain and discontinuing futile treatment could be justified, even if the patient died as the result of the act or omission.
Eight years later, in 1981, according to a report for the Dutch Parliament, a court in Rotterdam set nine criteria to justify assisted suicide and active euthanasia.
The person was convicted of helping a terminally ill person die because he was not a physician.
But the nine criteria were thereafter used in deciding if a person’s actions were justified. They were that:
(1) The patient must be suffering unbearably;
(2) The patient must be conscious when he expresses the desire to die;
(3) The request for euthanasia must be voluntary;
(4) The patient must have been given alternatives with time to consider them;
(5) There must be viable solutions for the patient;
(6) The death does not inflict unnecessary suffering on others;
(7) The decision must involve more than one person;
(8) Only a physician may perform the euthanasia;
(9) The physician must exercise great care in making the decision.
The debate centred around whether assisted suicide was better than a mercy killing and whether a physician should always be involved.
Warnings that euthanasia inevitably leads to a society killing those seen as a burden appeared to be justified by a study carried out for the Dutch Parliament in 1990. It tracked the evolution of the court decision allowing physician assisted deaths and found that 1,000, more than a quarter of the 3,700 euthanasia and assisted suicide cases in the country, had happened without the consent of the person who died.
Of these, 140 were considered fully competent to make their own decision, while 110 were partially competent at the request of the patient
As a result, the Dutch tried to define more precisely when a life could be taken and the subsequent new legislation also broadened the conditions. Over the past two decades the boundaries have been pushed out gradually.
Neighbouring Belgium has moved two steps ahead now, allowing euthanasia for people who are not terminally ill and for children. Luxembourg’s euthanasia laws are more restrictive but, like Belgium, it has tried to prevent ‘suicide tourism’, banning it for non-nationals, while Dutch law does not prohibit doctors from administering euthanasia to non-residents.
The Swiss, on the other hand, allow a person to kill themselves and be helped by a friend or family member with or without a doctor being involved. They also allow non-nationals to do so and have and have two organisations to help, Dignitas and Exit.
One of the most controversial issues, however, remains the age at which a person would be allowed euthanasia.
The Dutch allow terminally ill youngsters over the age of 12 years to choose to die but those under 16 must have the full agreement of their parents. Five teens — one younger than 16 have died in this way since 2002 according to the official figures.
The issue erupted in Belgium late last year when the parliament agreed to consider permitting euthanasia for young people from the age of 16 and for people with dementia. The law sets no minimum age but says the child must be of “sound mind and judgment”, which means it cannot be used to justify the deaths of young children and babies, according to its supporters.
The move galvanised anti-euthanasia groups and led to the formation of the Euthanasia Prevention Coalition Europe. One of its leaders is disability activist Kevin Fitzpatrick from Wales, who described Belgium as the “new world leader in exploiting euthanasia against those with disabilities and mental health issues”.
Oncologist and founder of the euthanasiestop.be group, Benoit Beuselinck, fears the new legislation will open the door to infanticide.
“Once the possibility exists for children to die, demand is likely to rise. It is clear among adults that it is difficult to keep euthanasia within limits once the taboo of killing has been breached.”
However, other doctors working with children say that they could always appeal to the Ethics Committee in their hospital and ask permission to end the life of the child. But on the other hand Doctors told the Senate hearing that older children never ask to die, they always hope tomorrow will be better.
The killing last September of 40-year-old Nathan Verhelst in Belgium, who had undergone sex change surgery that had gone wrong, led to accusations that doctors were now hiding their mistakes by killing their patients.
According to Tom Mortier, a chemistry lecturer at Leuven University in Belgium, and member of Euthanasie Stop, this is not the only example of what he sees as a dangerous practice.
He points to the case of a young women, known as Ann G, suffering from anorexia who had also been sexually abused by her psychiatrist successfully choosing euthanasia when her abuser was not punished.
“In many other countries, cases like Nathan Verhelst and Ann G would have been treated as medical malpractice cases. But this is no longer the case in Belgium,” said Mr Mortier.
“The Belgian medical profession has become judge, jury, and executioner for victims of its own incompetence and indifference.”
He is very critical of Dr Wim Distelmans, who has carried out several deaths for patients, helped draft the original 2002 Belgian law and chairs the Federal Control and Assessment Commission that judges whether cases comply with the law.
However, Dr Gerlant van Berlaer, a paediatric oncologist — a specialist in children’s cancer — was one of 16 paediatricians who signed an open letter in which they asked for euthanasia to be legalised for young people.
He said it was nonsense to think that doctors would simply kill children because as doctors and parents they will always want to do all they can to care for and cure a child.
THERE are acceptable alternatives, the Catholic Archbishop Andre-Joseph Leonard told the Belgian Senate, such as sedating patients but withdrawing essential nutrition and liquid often given intravenously so the person starves to death within days.
This addresses the case of dementia patients who, under the new Belgian law, could be euthanised whereas up to now, it was limited to persons who had requested it within the previous five years and were in a coma from which they were not expected to recover.
Parents who have watched children die came out both in support and against the change in the law. Linda Van Rooy would liked to have been able to see her 10-month-old baby girl, Ella-Louise, die without suffering the pain that was inevitable given her incurable genetic condition.
However, the question is how much suffering is too much, and how does a doctor decide?
In the Netherlands, where the law is more limited, there are five regional committees responsible for ensuring the conditions for assisted suicide are met. They reported that the numbers in 2012 that died by euthanasia was 4,188 — a 13% rise on the previous year. Close to 3% of all deaths are assisted suicides.
Research by Amersterdam’s VU university in 2012 published in the Lancet said there was a decline in the number of involuntary cases of euthanasia to 300 cases where a patient had not given explicit consent in 2010. This compared to about 1,000 cases before the legislation was introduced 10 years earlier.
In 2012, there were 10 cases where doctors had not complied with all the legal conditions — two of the cases related to people suffering dementia and the inspectors found it difficult to be sure that they were aware of what they were agreeing to.
About 80% of deaths are carried out in the patient’s home while most of the rest take place in hospital.
The number of euthanasia deaths in Belgium has risen from 235 the year after the practice was legalised to 1,432 in 2012 leading some to the conclusion that once available, its use will become common.
This was the conclusion of the report on euthanasia to the US Congressional hearing in 1998 where it quoted one of their witnesses, Herbert Henden’s conclusion on the Dutch experience that assisted suicide inevitably leads to “termination of the patient without explicit request”.
“The Dutch experience vividly shows how judicial sanctioning of physician-assisted suicide for terminally ill patients motivated by supposedly high ideals such as the right to individual self-determination and the ‘compassionate’ alleviation of physical suffering can easily lead to the unchecked nightmare of non-consensual termination of human life,” said the report.
“Simply put, an individual’s so-called ‘right to die’, over time, can be transformed into a demand by society that certain individual’s have a ‘duty to die’.
“This is the slope down which the Netherlands has slid. The tragedy of the situation in the Netherlands should serve as a graphic reminder to courts and legislatures in this nation that there is no way to regulate euthanasia. There is no way to stop the slide once a society steps onto the slippery slope by legalising physician-assisted suicide.”
A Rotterdam court stipulated nine criteria to justify assisted suicide and active euthanasia:
* The patient must be suffering unbearably;
* The patient must be conscious when he expresses the desire to die;
* The request for euthanasia must be voluntary;
* The patient must have been given alternatives with time to consider them;
* There must be viable solutions for the patient;
* The death does not inflict unnecessary suffering on others;
* The decision must involve more than one person;
* Only a physician may perform the euthanasia;
* The physician must exercise great care in making the decision.
Children of all ages may ask for help in dying
Belgium, which legalised euthanasia for adults in 2002, has now extended the right to children, writes Andrea Gerlin.
STEFAAN VAN GOOL has treated brain tumours in children for almost 20 years. None of his patients has asked for help to die. The Belgian doctor is now bracing for that possibility under a controversial law that is the first to end age limits for the young.
Terminally ill children may request euthanasia from doctors starting this month. To qualify, they must be in unbearable pain and be assessed by two doctors and a psychiatrist or psychologist. Their legal representatives must also consent.
The law makes Belgium, which legalised euthanasia for adults in 2002, the only country to extend such a right to all children. The Netherlands has permitted euthanasia in children 12 years or older since 2002. The law, which passed Belgium’s lower house of Parliament on February 13 and was signed by King Philippe this month, capped a months-long debate within the country and prompted worldwide reaction.
“It was one of those take-your-breath-away moral moments,” Arthur Caplan, who heads the division of medical ethics at New York University’s Langone Medical Centre, said in a telephone interview. “When you’re under 16, most parents don’t let children decide what to watch on television.”
Van Gool, the clinical head of pediatric neuro-oncology at University Hospital Leuven and a father-of-four, says the new law is “very, very dangerous”. He was one of about 200 paediatricians who signed a petition opposing it. Doctors have medical solutions to relieve the pain of terminally ill children, he says.
“We can take care of their symptoms,” he said in a telephone interview. A euthanasia request “has never happened to me”, he said. “I don’t know how I will react.”
He would not be forced to carry out euthanasia under the new law, according to Jean-Jacques De Gucht, an Open Flemish Liberals and Democrats senator from Aalst and a co-sponsor of the measure.
The measure was motivated by a desire to lift the arbitrary cutoff at age 18, De Gucht said in a telephone interview. “There is no age limit on suffering. We have to look at the maturity of the people, and if they’re completely able to make the choice, not their age.”
His proposal met with street protests in Brussels and opposition from the country’s three biggest religious communities. Spanish activists presented Belgium’s king with an international petition signed by more than 200,000 Europeans asking him not to sign the bill. The debate has raised questions about when children develop the capacity to understand the consequences of an irreversible act and to consent to it, and whether the requirements in place are sufficient to protect against misuse.
Opponents of the bill have also challenged whether “terminal” illness and “unbearable” pain can be objectively defined and worry that a sick child may be manipulated into an early death, especially in divided families.
Van Gool and Caplan are among those who argue that teenagers, much less children younger than 12, do not understand euthanasia and its implications well enough to be granted it. The age at which children can consent to sex in Belgium is 16.
“Insurance companies will give a higher rate for 18- to 22-year-olds because young adults are more impulsive and have less control,” van Gool said. “Only for killing yourself, Belgium accepts you have full control over your impulses.”
Jan Bernheim, a retired Belgian oncologist and part-time professor at the Free University of Brussels who says he has helped about 30 adult patients who have requested euthanasia, says the law recognises some children are exceptionally mature — more than some adults.
“They have gone through several years of intensive treatment,” Bernheim said. “They have been under existential threat for years, they have seen young people their age in the wards and they have seen them go downhill and sometimes even die.”
HE compares the mature children to Anne Frank, the Jewish teenager who hid in from the Nazis in an Amsterdam attic during the Second World War, who chronicled her life in The Diary of a Young Girl.
“No one would dispute that Anne Frank was a mature person at 13 or 14,” Bernheim said. “Not all children are like this, but there are some who are.”
There have been no requests to use the law so far, according to the group that tracks euthanasia cases in Belgium. In practice, Belgium probably won’t allow euthanasia for children under 12, if their ability to grasp consequences and consent is taken into account, says Nancy Berlinger, a research scholar at bioethics institute the Hastings Centre in Garrison, New York.
That capacity begins to emerge at about seven or eight years and develops through childhood into the third decade of life, according to Berlinger. Doctors and scientists tend to recognise that older adolescents may have the capacity to make medical decisions, especially concerning reproductive health and contraception.
“In practical terms, that rules out most people below the age of younger adolescents, or seven to 12 years,” Berlinger says. She predicts children requesting euthanasia will be “extremely rare” in Belgium. In the 12 years since the Netherlands allowed euthanasia for children from age 12, five have been granted it, according to Nicole Visee, the general secretary of the regional review committees, which keep records of deaths that occur under the law.
Under the new Belgian law, two doctors must certify the child is suffering “unbearably” from a physical condition and a psychiatrist or psychologist must attest that he or she is mentally sound. The doctors must assess the child’s capacity to “discern” what the procedure involves, a test defined in Belgium’s civil code.
Penney Lewis, law professor at King’s College London, said the Belgian provision defines terminal illnesses as those in which death is expected within “days, weeks, months”, or probably less than one year. In the American state of Oregon, adult euthanasia law specifies a time period of six months.
“It’s never perfect, there’s always uncertainty,” said Lewis, who is co-director of the college’s Centre for Medical Law and Ethics. “We know there are patients who received a prescription in Oregon and are still alive six months later.”