News | Sunday, 15 February 2009

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Eluana Englaro’s last will

In a ‘living will’, a patient can leave clear instructions on what medical procedures should or should not be followed in the case they become unconscious. In the wake of Eluana Englaro’s death, JAMES DEBONO asks if Malta should enact a law allowing its citizens to determine their fates

Eluana Englaro could not verbally request to have a feeding tube that had been keeping her body alive for 17 years, removed. In his role as her legal guardian, Eluana’s father Beppino had to fight a decade-long battle in the law courts to stop what he considered was the artificial prolongation of his daughter’s life.
Eluana’s tragedy has prompted Italian MPs to ponder on a law that would enable people to draw up “living wills”, stipulating how they wish to be treated in the event of losing consciousness in order to avoid a repetition of Englaro’s case.
17 years ago, the wild-haired Eluana Englaro, still 21, lost control of her father’s car on an icy road as she was driving back from a party. It smashed into a lamppost. Eluana was rushed to the nearest hospital, slipped into a coma, and scans revealed severe and irreversible brain damage.
For the next 17 years, she lied on a hospital bed with her eyes open but vacant, in a persistent vegetative state, while the whole of Italy argued over her fate.
A year and a day before her own accident, a friend of Eluana called Alessandro had crashed his motorbike, suffering serious brain damage. He remained severely incapacitated and he would die 10 years later, seven years before Eluana. In great distress, Eluana had then told her father: “If something like that ever happened to me, you have to do something. If I can’t be what I am now, I’d prefer to be left to die. I don’t want to be resuscitated and left in a condition like that.”
She had no idea that her words would prompt her father to fight a long legal battle to have her “verbal” will respected.
In 1999 Beppino requested to have her feeding tube removed and to allow her to die naturally, stating that she “has clearly expressed the wish to die in the case of an accident leaving her in a coma or a vegetative state.”
Her younger cousin Germana, who adored Eluana, wrote to the courts, in March 2003, calling for her cousin “with the marvellous smile” to be allowed to die. “This voice asks for her to be released,” she wrote.
The father’s request to allow his daughter to die was denied both in December 1999 by the Milan Court of Appeal and in April 2005 by the Court of Cassation. But a request for a new trial was granted by the Court of Cassation on 16 October, 2007 and on 9 July, 2008, the Milan Court of Appeal declared that Eluana’s father and legal guardian Beppino Englaro was allowed to suspend feeding and hydration.
On 13 November, 2008, Italy’s highest court awarded Eluana’s father the right to stop his daughter from being fed. In February she was moved to a private hospital in Udine, where a medical team assisted her during her final days.

Enter the Cavaliere
And then came the political shock. On 6 February, 2009, Prime Minister Silvio Berlusconi issued a decree that would have forced the continuation of the treatment of Eluana, and thrust Italy into a constitutional crisis when the President of the Republic refused to sign the decree. Stating that: “This is murder. I would be failing to save her. I’m not a Pontius Pilate,” Berlusconi went on to defend his decision by claiming that she was “capable of having babies” – a remark described by La Stampa newspaper as “shocking”.
Eluana Englaro passed away three days after her food and water supply was stopped, while the Italian parliament was still discussing a government-backed law to resume her nutrition and overrule both President Giorgio Napolitano and the country’s Constitutional Court.
Only one thing eluded the media frenzy of the past days: an image showing how Eluana looked before she died. Pictures of Eluana as a pretty teenager did not help her father’s cause as they kept alive the image of her as a radiant young girl, hiding the reality of a sick 38-year-old body devoid of consciousness.
By only allowing people to see Eluana as she was, he kept her vegetative body out of the public gaze. “No, there’s a limit,” he said. “There are some things you don’t transgress,” Beppino, whose wife is dying of cancer, told British newspaper The Guardian, when asked to show them a photo of Eluana’s disabled body.

How far should life be prolonged?
Ironically patients like Eluana Englaro owe their survival in a vegetative state to medicine’s increased capacity to keep patients’ bodies alive for long periods of time.
Sunny von Bülow survived in a persistent vegetative state for 28 years until her death in a New York nursing home on December 6, 2008. These life prolonging technological developments have raised the question on whether life should be prolonged artificially.
In fact, refusing life-prolonging treatment is not considered to be an act of euthanasia. “One should distinguish between euthanasia or actively killing a patient and letting nature take its own course when treatment is considered to be disproportional,” says former MP Michael Asciak, chairman of Malta’s Bioethics Consultative Committee.
According to Asciak, while one is always morally obliged to provide or receive ordinary treatment, one is not always obliged to provide or receive “extraordinary” treatment. The difficulty according to Asciak, is to determine which treatment is proportional and which treatment is disproportional and extraordinary.
“There is no magic formula… one is ought to ask several questions such as whether the patient is dying or not, or whether there is any chance of the patient ever returning to a relatively normal life and attain independence.”
Pressure ventilation with air, in cases were the patient is not able to breathe, is in some cases considered as disproportional treatment. “If this is thought to constitute disproportional treatment, the machine can be disconnected allowing the patient to move on naturally. A patient will die in this case in three to five minutes.”
But the withdrawal of hydration and feeding in cases of chronic irreversible and severe illness, is more controversial according to Asciak.
“This is probably due to the fact that on their withdrawal the patient may take several days to die, and because some people would always consider hydration and feeding to be proportional treatment.”
In the case of Eluana Englaro, the Italian Bioethics Committee chaired by Professor Francesco D’Agostini reached the conclusion that hydration and nutrition should always be considered as proportional treatment. The decision was not unanimous. On the other hand, the Italian Constitutional Court deemed the treatment disproportional.
The Vatican’s Pontifical Academy for Life considers the administration of water and food, even when provided by artificial means, to be a natural means of preserving life, not a medical life-prolonging act which can be refused.
But UK courts have deemed that hydration and nutrition constitute an artificial medical treatment that is not in the patient’s best interest.
Tony Bland, a Liverpool supporter who sustained major injuries in the Hillsborough disaster, was allowed to die in 1993, becoming the first patient in UK legal history to be allowed to die by the courts through the withdrawal of life-prolonging treatment.
The Maltese Bioethics Consultative Committee has not found itself deciding on cases similar to Bland and Englaro. “I have my own personal opinions on the matter which I will conveniently keep to myself,” says Michael Asciak, who simply points out that “Eluana passed away after four days of withdrawal of food and water and one sincerely hopes that all parties involved have learned lessons for the future.”

Living wills
By introducing a ‘living will’ patients can specify what kind of life-prolonging treatment they would refuse if they lose consciousness or are unable to decide for themselves.
Under the 2005 Mental Capacity Act, of the UK, people may make an advance directive stating what sort of treatment they would refuse. British law does not foresee euthanasia, but the advanced refusal of treatment in case the person lacks mental capacity.
Yet drafting a similar law is not easy, as one has to establish what kind of treatment patients should be allowed to refuse. In Italy, where a law foreseeing the introduction of living wills is being discussed by parliament, conservative and Catholic MPs favour the institution of living wills on condition that nutrition and hydration are never stopped.
On the other hand, left-wing and liberal MPs argue that nutrition and hydration should only be stopped if this is foreseen in the patient’s living will. It is still doubtful whether living wills would avert cases like Eluana Englaro’s, who was only 21 when she had her car accident. Is it likely that she would have made a living will at such an early age?

Living wills in Malta?
Malta does not recognise the legal validity of living wills even if the patient leaves clear instructions on what medical procedures should or should not be followed in the case where he or she becomes unconscious.
To make living wills enforceable, parliament will have to approve a specific law. According to Dr Asciak, in the absence of legislation the onus will often fall on bioethics committees or the law courts, or as in the case in Italy and the USA, the constitutional courts.
“One ought to say that legislating on such issues is not simple due to the fleeting nature of the proportionality argument itself and many argue that these cases had better be left to a one-on-one basis,” Asciak said.
Members of parliament’s social affairs committee were anonymous in opposing living wills which give patient a right to refuse life-saving treatment. “As a doctor I think that my first duty is to save and not to terminate life,” Labour MP and social policy spokesperson Michael Farrugia said.
The same sentiment was expressed by Nationalist MP Michael Gonzi. “I have a number of patients including a four-year-old who is fed through a tube in his stomach who suffers from neurometabolic disorder from birth.”
Both Farrugia and Gonzi pointed out that although recovery from conditions like PVS are unlikely today, scientific developments can make this possible in the future.
“I therefore do not agree with passive euthanasia and do not feel the need of discussion in parliament as this should not be an issue.” Gonzi said,
Farrugia only agrees with living wills as a way to allow patients to decide on whether to donate their organs to others after the moment of death. “Despite the donor card, it is the next of kin who decides whether organs are donated or not. A living will gives the patient the final say.”
“In all these issues, my stand is pro-life,” Labour MP Justyne Caruana, who also sits on the social affairs committee, told MaltaToday. “As a start, we need to regulate the organ donation and make sure that the wishes of the donor are respected. This should lead to discussions on other topics to curtail any unethical practices and procedures.”

jdebono@mediatoday.com.mt

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