‘A Story of Terminal Sedation’
The following article from THE AGE (Melbourne) March 7, 2001 was forwarded by the DELIVERANCE NEWS SERVICE.
THE HARD WAY OUT
Chloe Saltau with Theresa Ambrose
In debates about euthanasia, the drugs are never quick. The images are of first one, then another wretched and terminally ill patient suffering, creeping towards death, wanting death. The legal, ethical and moral arguments for and against voluntary euthanasia – medically assisted suicide – swirl around such people; usually unchanged, and usually extolled by the same doctors, bioethicists, philosophers, churches and politicians who trotted them out last time around. Five years ago, Northern Territory legislation enshrining a terminally ill patient’s right to have a doctor deliberately end their life expired on the floor of Federal Parliament at the hands of Kevin Andrews’ private member’s bill. Perennially, though, the issue is resuscitated, just as you can depend on the odd episode of E.R. about a gaunt, agonisingly sick patient who isn’t going to get better, and the fraught wringing of hands among doctors and family over whether to intervene and help them breathe, or hasten death.
In January, the real-life patient at the centre of Australia’s latest euthanasia debate was a 72-year-old Sydney woman, Norma Hall, whose frail body had been ravaged by three types of cancer; of the liver, bones and lungs. She appeared on ABC TV’s 7.30 Report and said that, like Max Bell before her, she was sick of the suffering and wanted to control the time and manner of her own demise.
“What I want is comfort when I’m dying. That’s what I hope to get instead of extreme discomfort,” she told the program. “The plan is to stop eating and drinking and to have nursing care until such time as I am able to be sedated.”
Mrs Hall did die, in her Coogee home eight days after her last meal and after taking large doses of morphine and other prescribed sedatives. Her death prompted police to consider criminal charges against members of her family and the doctor, Philip Nitschke, who has vigorously advocated voluntary euthanasia in this country. A former Liberal federal health minister, Peter Baume, was among the doctors involved in prescribing Mrs Hall the sedatives. “A patient has a right to make any decision he or she wishes, and that includes the right to end their life,” Dr Baume told the 7.30 Report.
In response, Melbourne bioethicist Nicholas Tonti-Filippini expressed concern that anyone should die “in the circumstances of a self-publicist in the death stakes like Philip Nitschke.
“The way in which a person is able to deal with the pain they have, the extent of that pain experience, the extent to which they suffer, is very, very much dependent on the way those around them treat them and regard them and hold them to be valuable,” he said.
The shades of the euthanasia debate are not as well defined as the often polarised opinions suggest.
For a start, there is the matter of definition. The original meaning of the word euthanasia, derived from the Greek, is “good death”. Most accept the basic right of a patient to refuse unwanted medical treatment such as feeding tubes or hydration. Less recognised, though, is the notion of “medically assisted suicide”, whereby a doctor precribes medication that may ease pain or cause death, and the lethal dose is administered by the patient.
Ostensibly this is what happened in the case of Norma Hall, and what the president of the Voluntary Euthanasia Society of Victoria, Rodney Syme, thinks we should move towards in Australia. A little further still along the road is voluntary passive euthanasia, in which a doctor, with the patient’s consent, administers the lethal dose.
In 1995 the Northern Territory passed the world’s first voluntary euthanasia laws. Even in the notoriously liberal Netherlands, where a small percentage of the population each year is helped by doctors to escape the pain of a terminal illness (1.8 per cent of deaths, according to a 10-year-old Dutch government survey), voluntary euthanasia remained technically illegal until a few months ago. Until then, official regulations in the Netherlands meant doctors were not charged with breaking the law if patients made a voluntary request, been well-informed, expressed a longing for death and were in unacceptable pain.
In the American state of Oregon, it is legal for doctors to prescribe lethal medication, which patients can take without help. According to Dr Syme, there has been no abuse of the system.
While people like Max Bell, 66 and with stomach cancer, journeyed to Darwin and waited to use the Northern Territory laws, the political, moral, religious and legal reaction in Australia and around the world was swift. In the end, Mr Bell had to drive back home to Broken Hill, where he died in hospital, having failed to find the required psychiatrist and specialist in the Northern Territory to help him.
Gino Concetti, a Franciscan priest, wrote vehemently at the time in the Vatican publication L’Osservatore Romano, that the Northern Territory laws would open “a new monstrous chapter in the history of mankind”, and foster a macabre “culture of death”.
“The real solution for the irreversibly, terminally ill is not euthanasia – a monstrous and aberrant crime – but in the aid which society, the family and associations can give them from worthy hospitals, efficient health services, human solidarity and Christian consolation,” Mr Concetti wrote.
“The suffering, terminally ill person reminds us of the reality of life which has a natural dawn and sunset but a transcendent value.”
Set against the priest’s words, at the other end of the spectrum of arguments on euthanasia, was this from former governor-general Bill Hayden: “I have visited too many nursing homes, seen too many vegetating old people who were once vigorous, vivacious personalities, now dependent on their middle-aged children much as, when infants, those children were dependent on them. This loss of personal control, of autonomy, of human personality, would destroy my sense of dignity.”
Their words, though emotive, encapsulate most of the arguments for and against voluntary euthanasia. In the “against” corner is the notion that human life is intrinsically valuable and therefore to hasten its end is inherently wrong. As Mr Concetti implies, no man is an island entire of itself, so one person’s decision to end his or her life is an assault on the value of everyone’s life and on society. Mr Concetti also touched on the value of palliative care and family support to manage and relieve pain and enhance comfort, effective in about 95 per cent of cases, which in his mind made euthanasia not only monstrous but unnecessary. Then there is the argument, articulated by an anti-euthanasia campaigner in Sydney, Jim Dominguez, which takes account of the small step from terminal to other illnesses.
“Anyone with a disease that would become terminal if not treated is in the frame of the legislation – a diabetic could avail themselves of this law,” Mr Dominguez was reported as saying in 1996. The implication from some ethicists who run the “slippery slope” argument is that there is but another small step between justification for voluntary euthanasia and non-voluntary euthanasia, where the wishes of an incapacitated patient are decided for them on the basis of a previous declaration.
In the pro-euthanasia corner the arguments go something like this, and rest on the premise that it is sometimes in the best interests of the hopelessly ill patient to hasten death: people have a basic right to personal freedom and dignity, and to be self-determining when it comes to their own life and death. They say palliative care can help certain patients only so much. And, in any case, doctors have openly admitted that euthanasia happens all around the world anyway, so why not legislate to ensure that all the appropriate safeguards are in place?
Dr Syme, one of the “Melbourne Seven” group of doctors who admitted they helped patients to die, says the debate has progressed in recent years. With private members’ bills before parliament in South Australia, he expects that before long euthanasia will again become a legislative issue in Australia.
“A couple of years ago it was more about philosophical and erudite arguments, but what’s been happening recently is a much closer focus on particular practice about how people are dying in our society today and the lessons that we can draw from that,” says Dr Syme.
He has effectively tested the law by reporting cases of “terminal sedation” to the coronor, and been told in response that in at least one case, where morphine and a sedative were administered simultaneously, the death was not in fact reportable.
He envisages voluntary euthanasia re-emerging as an issue as experts in palliative care “begin to deal with it honestly and are prepared to ask the question – is it sometimes in the best interests of hopelessly ill patients to hasten their death? If the answer to that question is yes, in a civilised society we have got to address it, be honest about it.”
He says some palliative care specialists are already coming to recognise this view. But the Australian Medical Association has maintained its official opposition to voluntary euthanasia.
“Norma Hall is a clear example of a person with a terminal illness, who is rational and who wants to die for a number of reasons,” Dr Syme says. “She just didn’t want to see herself slowly deteriorate into a shell of the person she once was. I’m totally sympathetic to that. I don’t want that for myself.”
He explains that doctors can legally prescribe drugs that might inadvertently lead to death if their intention is to relieve the patient’s pain, which demonstrates the “irony, hypocrisy and stupidity that the law maintains”.
In the meantime, Perth GP Daryl Stephens faces the country’s first criminal euthanasia case, with charges of wilful murder and aiding a suicide. Charges were initially dropped, but the case is being pursued by the WA Director of Public Prosecutions.
Although the euthanasia fight has so far been largely fought within the well-defined parameters of terminal illness, the development of medical technology designed to keep people alive who are critically ill and incapacitated is dramatically changing the way people die, and has implications for the debate in years to come. Half a century ago, most people slipped away quietly in their homes; these days, they are more likely to be connected to whirring hospital machinery when they die.
Dr Syme thinks another generation might have passed before euthanasia is a genuine issue for incapacitated patients whose only option today is to spend the rest of their lives in nursing homes or in the throes of dementia, and that the debate will continue to rage around terminal illness in the short term. But, he says, politicians remain frightened of the issue.
In the meantime, we will see cancer patients such as Norma Hall and Max Bell lingering at death’s door, yearning for what they perceive as a “good death”. Whether they get one, endorsed by law, at least, remains to be seen.
California’s Natural Death Act allows those patients capable of making a reasoned decision to give instructions to hospitals to withhold or withdraw life-sustaining procedures.
The South Australian Parliament passes the Natural Death Bill to allow terminally ill patients the right to refuse measures to prolong life.
December 23, 1988
A Victorian Supreme Court judge rules that terminally ill patients have “no legal right to die”. June 4, 1990 Dr Jack Kevorkian (below) becomes known as “Dr Death” after an Alzheimer’s sufferer uses Dr Kevorkian’s suicide machine to end her life.
December 1, 1991
A US Federal statute called the Patient Self-Determination Act obliges health-care providers to give written information to patients at the time of hospital admission about their rights to use “advance directives” for health care.
Doctors in NSW are no longer bound by law to resuscitate a person “no matter what”, under interim guidelines on dying, the first in Australia. November 1993 The president of the Australian Medical Association, Dr Brendan Nelson, calls on the states to legalise doctors’ right to withdraw treatment of premature or malformed babies. June 1994 In the Netherlands, official regulations are codified although voluntary euthanasia remains illegal.
February 22, 1995
Chief Minister Marshall Perron introduces voluntary euthanasia legislation into the Northern Territory Parliament.
March 9, 1995
A euthanasia bill is introduced into the South Australian Parliament.
March 25, 1995
Seven Victorian doctors, who admit that they helped terminally ill patients to die, urge Premier Jeff Kennett to change euthanasia laws. The Medical Practioners Board of Victoria and the homicide squad later drop their investigation of the seven doctors.
The Australian Capital Territory considers a bill to allow euthanasia.
Darwin-based Dr Philip Nitschke (far right) develops a computer program that will administer a lethal injection at the push of a button.
A Circuit Court of Appeals removes a New York state law that prohibited physicians from helping patients die.
May 3, 1996
Singapore’s parliament approves a bill giving terminally ill patients the right to die.
May 9, 1996
A Melbourne nurse who allegedly turned off a patient’s life support system at St Vincent’s Hospital is charged with murder and attempted murder.
July 1, 1996
Northern Territory’s Rights of the Terminally Ill Act comes into effect.
July 2, 1996
The Vatican, in an editorial in its newspaper, condemns the world’s first voluntary euthanasia law.
A Darwin man suffering from cancer, Bob Dent, becomes Australia’s first person to die under the Northern Territory’s euthanasia law.
March 25, 1997
The Senate passes Liberal MP Kevin Andrews’s (left) private member’s bill overturning the Northern Territory’s voluntary euthanasia law.
The South Australian Government’s Upper House passes a private member’s bill for euthanasia.
The Anglican Church in Britain declares euthanasia incompatible with Christian faith.
Dr Philip Nitschke wants to escape Australian laws by performing “peaceful deaths” on a floating hospice in international waters.
November 29, 2000
The Netherlands becomes the first nation to legalise euthanasia.
January 11, 2001
The West Australian Director of Public Prosecutions reinstates the charge of wilful murder against a Perth doctor and the victim’s two siblings. A preliminary hearing last year found a jury would be unlikely to convict the three, who were accused of helping the victim die.
Compiled by Theresa Ambrose