Issue No. 29
Triumphant World Movement Presses Forward
Report from the 11th International Conference of the World Federation of Right to Die Societies -- Melbourne, Australia, Oct. 1996
by Derek Humphry
I have attended every international conference held since l978 by the World Federation of Right to Die Societies, and there was a special flavor about the one in Melbourne, Australia, October 16-18, l996. It had the sense of victory -- at last -- and optimism for the future.
So much has happened in the two years since the previous conference in England: the Oregon Death With Dignity Act was passed and the US Supreme Court agreed to hear appeals on two major cases. A few thousand miles farther north of the conference, in a little known tropical area named the Northern Territory (NT) there had existed for a mere three months a law permitting voluntary euthanasia and physician-assisted suicide for the dying.
One individual, Robert Dent, dying of cancer, had already taken advantage of it. Dent and his helper, Dr.Philip Nitschke, were heroes to millions of people for breaking the assisted death barrier lawfully. Also feted in Melbourne was the politician Marshall Perron, whose courage and intelligence steered the ground-breaking law through the NT legislature in l995.
At the time of the Melbourne conference, all Australia was locked in a fierce debate over the morality of euthanasia (the blunt-spoken Aussies don't go in for euphemisms like 'aid-in-dying'.). The media was full of accounts of how some politicians might, or might not, be able to de-rail the new law; or whether that country's Supreme Court would soon want to test its constitutionality as the similar court in America will in l997.
In my previous four visits to Australia I had witnessed the strength and determination of the opposing rightto-life movement, but this time it was more powerful and visible. Some 100 demonstrators lined the approaches to the conference hall on the day of public sessions with banners, most of which said "Kill the Pain, Not the Patient" or "Patient Care, No Lethal Jabs". Picketers were persistent, well organized, but never unruly. Clearly we are going to have to defend our modest gains for many years to come.
Delegates were pounded with questions about what the rest of the world thought about the NT's breakthrough. Were foreigners envious, jealous, or astonished? My own answer in interviews was that most of the rest of the world was pleased and proud of Australia's courage. The incessant amount of radio interviews done by delegates almost derailed the flow of the conference!
(Of course, in the Netherlands, physician-assisted deaths take place all the time, but a law remains in the Penal Code making it criminal. So, under the Napoleonic legal code, Dutch law enforcement authorities do not prosecute doctors provided there is force majeure -- justification according to stipulated guidelines.)
Taking their cue from the NT victory, the 27 delegates from 12 nations attending the conference -- plus more than 200 members of the public at certain sessions -- spoke with greater frankness than ever about the complexities and sensitivities surrounding the hastening of the death of a terminally ill, competent adult.
Drug dosages for painless euthanasia and effective self-deliverance were discussed at open sessions in the presence of journalists and writers, whereas in l991 when my 'how-to' book Final Exit appeared in Australia it was instantly banned by the government's censorship board. (On appeal, the ban was lifted.)
Perhaps the most discussed issue at the conference was when and how counseling should be conducted for the dying who seek help, because that is a mandatory feature of the NT's Rights of the Terminally Ill Act, of Oregon's stalled Death With Dignity Act , as well as of all potential legislation. But it was intriguing to hear an English lawyer, Malcolm Hurwitt, point out that the basis of English law (upon which the former British colonies, including the USA, have based their present legal systems) that a person is considered sane and rational until proved otherwise. Which begs the question of why these new laws require the poor dying patient to prove his or her competence in order to get hastened death and avoid further suffering. Some might say such a request was a supreme act of rationality! One does not have to prove competency when being married or having a baby.
The title of the conference Voluntary Euthanasia: Securing The Choice was very much its theme. Delegates and public alike were conscious of the need to protect what gains had been made in the law and public opinion by making the new law work well, and learning from its implementation how to extend its benefits to other countries and states. Australia, like the USA, must deal law reform on hastened dying on a state-by-state basis.
It came as a surprise to most delegates, and illustrated how we all narrowly focus on the problems of law reform in our own countries, to be told that Switzerland has permitted assisted suicide since l937. It does not even have to be by a doctor provided the motive in helping is pure and noble. There has never yet been a court case of alleged abuse of this law. Out of approximately 100-120 cases of assisted suicide reported in Switzerland each year, only about 20 involve physicians.
The same lack of criminal sanction exists in Germany, although public guilty conscience over the Holocaust and the Nazi forcible wartime 'euthanasia' of physically and mentally handicapped citizens make it a very taboo subject in that country. Norway also has no legal prohibition but the religious and social taboos there keep any such aid in dying to a covert few.
We heard that there are moves afoot to have new laws passed in the England and Scotland. England has tried six times since l935 to modify the law on assisted suicide but each time has been completely frustrated, chiefly by pressure from the churches, despite some 80 percent of support for voluntary euthanasia from the population.
Many in the Netherlands are not satisfied with the existing way of sanctioning what they call "Medical Decisions At the End of Life" (MDEL). The Dutch Voluntary Euthanasia Society (NVVE) is pressing Parliament for a new law in l997 that will enshrine the current guidelines with legality. This will remove the public stigma of it still being technically a criminal procedure and improve the case reporting by physicians who resent this.
Altogether a most remarkable conference, brilliantly hosted by the Voluntary Euthanasia Society of Victoria, taking advantage of the world spotlight on Australia at that point in time. Delegates went back to their homelands replete with shared ideas for political action, law reform, and cautious implementation of the right to die with dignity. What shall we have to report when the conference resumes in Zurich, Switzerland, in l998? I think the evidence shows that international juggernaut for 'death with dignity' is now rolling in an unstoppable fashion and provided we handle our gains in a responsible way, the next century will see the matter largely resolved.
(No copyright provided acknowledgement given)
How the First Euthanasia Law Was Passed
Address by Marshall Perron, former chief minister, Northern Territory of Australia, to the 11th international conference of the World Federation of Right to Die Societies, Melbourne, October 17, l996
Following a long gestation period and a difficult birth, legal voluntary euthanasia is fighting for survival [in the Northern Territory].
It may seem odd to some that the first jurisdiction in the world which passed legislation on voluntary euthanasia did not have a right to die society or similar body pushing the subject for some years, as many of you have.
In fact, when I decided to introduce legislation to Parliament, I had no idea that there was a world-wide network of right to die organizations. The Victorian Voluntary Euthanasia Society was the only one I knew of.
The motivation behind my decision to initiate legislation came from Dr.Helga Kuhse, Professor David Kelly and Dr.Roger Hunts' papers at a conference titled 'Ethics and Law - The Dying Patient' sponsored by my arch enemy, the Australian Medical Association, in Canberra on August 11, l994.
Helga's paper on 'Medically Assisted Dying for Competent Patients' was so compelling, so absolute in its logic and good sense, it motivated me to try and do something about it.
While I could not predict success in the end, I knew that even if the Northern Territory Legislative Assembly did not adopt the proposal I was putting forward, the public debate which would transpire while the bill was before parliament would advance the day when another politician somewhere would try again.
Having read all the papers presented to the AMA seminar (for and against), I concluded that if the proposal was limited to competent, terminally ill adults, most of the arguments against voluntary euthanasia were emotional and hypothetical and could not be sustained.
The secret to winning arguments was to provide lots of information on exactly what was proposed, to anticipate all the questions and answer them, if possible in advance of them being asked. If we were gong to be attacked from all sides with big guns, I wanted to be attacked for what I was advocating, not for what someone thought I was advocating, or what some mischievous opponent alleged was advocated.
Opponents to VE have succeeded in scaring the politicians many times over the years, and they do that by misrepresentation and distortion, mixed with a good dose of the hypothetical. In drawing up the draft bill to be released publicly for comment, I drew heavily from the document prepared earlier by the Victorian VES.
I may not have known about the extent of the movement, but I did know how to draw upon the expertise and past efforts of others to avoid having to re-invent the wheel. Not only did the Victorian VES draft bill form the basis of the Rights of the Terminally Ill Act , the contribution made by President Dr.Rodney Syme, Dr.Helga Kuhse, Prof.David Kelly, Prof. Max Charlesworth, and Dr.Roger Hunt from South Australia was invaluable.
In fact, without their detailed responses to my many questions in writing and verbally, I could not have confidently presented a case for VE that was unassailable unless one resorted to religious dogma, which of course many did.
Other questions had to be answered about the effect of VE on life insurance policies, the guardianship laws, the law relating to cremation and death certificates. I even had to determine if national authorities would deny doctors access to lethal drugs if the law came into force in the NT alone.
By this time, we had assembled a body of information which I hoped would prevent me being 'caught out' in the public arena by not having done my homework. It could have been disastrous to admit anything had been overlooked.
Being sensitive to the fact that some individuals, for religious or other reasons, would take strong exception to working up such legislation and a public campaign to support it, I took the unusual step of preparing the drafting instructions for the bill personally, only to find to my delight that my staff were 100% supportive and enthusiastic to help with the campaign.
A draft bill was released first, together with carefully prepared notes explaining every clause in the bill clearly. That initial package also contained a background paper explaining what I proposed and why.
The package was given to the media on the 1st February 1995 and posted to all Territory politicians and to 300 organizations and individuals throughout the Territory, so they had access to more information than would come through the media.
A key part of my strategy was to attempt to contain the ensuing public debate to what I had proposed, not what other commentators might allege I proposed.
If the community and/or politicians became either confused or frightened during the passionate debate, the issue would most certainly be lost. If we could keep people talking about the rights of competent, terminally ill adults, and focusing on the built in safeguards, there was a chance of success.
The tactic was to instantly correct every statement made which alleged the draft bill allowed things it did not. We also had an answer for every query raised about the effect on wills, vested interests, medical records, the role of the Coroner etc.
This strategy worked well and opponents to the proposal had to argue facts, not fiction, and in the end differences were largely of opinion. That is not to say the debate wasn't heated. The major opponents were the AMA, Church groups and right to life organisations. They were forceful and well funded.
When the campaign was at its peak, they resorted to dishonest claims and statements which probably worked against their interests, because by this time the community was well versed in the real issues.
The initial public reaction was somewhat as I had anticipated although the expressions of support were in stronger terms and more voluminous than expected. It may have been that as a politician I was not accustomed to praise for what I was doing.
The draft bill was refined following constructive criticism received and a final bill introduced in Parliament on the 22nd of February lst year. Again, a comprehensive package of information was distributed widely to keep interested commentators and opinion leaders fully informed.
The volume of mail coming in increased as news spread around the country. Supporters poured their hearts out as they related stories of horrific suffering they have witnessed. It was as if they had bottled up their pain and anger for so long , and now could tell someone.
I have letters from people who, through love and compassion, have killed a parent to free them from a tortuous existence, regretful only that they did not respond to the pleas to die earlier.
A Parliamentary Committee was established to receive submissions on the Rights of the Terminally Ill Bill. At first, suspicious that a committee would be a devise to delay passage of the legislation through Parliament, I finally agreed to support it on the basis the committee's charter did not include forming an opinion on the principle of voluntary euthanasia and that it would report back to Parliament within three months.
It was paramount that the decision on whether or not VE was supported be made by the whole Parliament, not a sub committee of Parliament.
The committee served a useful purpose and made a number of suggestions on how the bill could be improved if Parliament agreed the principle should be supported. The large volume of submissions and oral evidence assembled by the committee is available to the public for reference.
I concluded, after the committee reported, that there are not a lot of "swingers" in this debate. I do not believe any member of the committee changed their mind on the issue, despite reading hundreds of submissions and questioning dozens of witnesses for and against VE.
I also believe that almost all those who oppose the decriminalisation of voluntary euthanasia are religiously motivated. While people will give you all the hypothetical slippery slope reasons for their opposition the facts are they will never agree to VE even if you suggest an absurd level of safeguards.
During the period the bill was before Parliament and the debate raged, a small band of supporters under the leadership of Lynda Cracknell, formed a group which conducted what they called "Operation T.I.A.P.," (Terminally Ill Act Petition).
As I mentioned earlier, we had no VES and I played no role in getting Operation T.I.A.P. underway. It was spontaneous action by concerned citizens and we are all indebted to them for the time, effort and expense they put in during the main campaign.
Under Lynda's guidance, the players in Operation TIAP went on to form the NT VES which played a key role in keeping the world informed of events and providing input to government regulations since the Act was passed.
While the bill was before Parliament, further amendments were suggested which it was evident would have to be accepted to gain sufficient support for the bill to pass through the house. Personally, I believe that the safeguards contained in the bill I originally introduced were quite adequate to ensure that only patients who were genuine in their desire to hasten death and were experiencing unreasonalbe levels of suffering were able to receive assistance.
Others thought differently, so I accommodated their wishes with amendments and two other members of parliament also moved their own amendments.
I fully support the democratic process and gaining consensus on what is probably the most controversial of all issues is an achievement in itself.
It was clear right from the beginning that members of parliament were bound to upset some of their constituents whichever way they voted , and in small electorates which can be won or lost on thirty votes, this presents a real dilemma. I am sure a few of my colleagues cursed me many times for putting this issue on the agenda.
Even though every member of the Legislative Assembly spoke in the marathon debate, in which members genuinely tried to sway each other to their point of view, it was not possible to predict how the vote would go until it was taken.
As you can probably imagine, it was a tense moment.
I said after the successful vote, "It's good to know democracy is alive and the conscience vote still means something". How those words came to me at that hour I'll never know, but in hindsight they fitted the occasion perfectly.
Every single member voted as they believed they should. No vote was cast to support or oppose another member in the Parliament. It was true democracy at work, as it should be on this issue.
What we have ended up with is a very safe, conservative law which may have made VE harder to access in the NT than illegal assistance to die is elsewhere in Australia, particularly as the Territory Goverment later unexpectedly jumped the safeguards up considerably, with a regulation requiring an opinion from a specialist in the terminal disease.
If we have made it harder to access VE, we have also made it fairer and we have made it safer. I use the word "fairer" because the big achievement of this law reform is that for the first time, every competent adult is on an equal footing. Finding a doctor willing to assist if you face the prospect of a 'hard' death, should not be a gruesome lottery.
You should all have received a copy of the flow chart of procedures under the Rights of the Terminally Ill Act. It broadly shows the number of steps involved before a doctor can assist a patient die and some of the monitoring requirements after that event takes place.
The legislation passed through Parliament on 25th May 1995. Before becoming operational it was amended to require a psychiatrist to be formally involved in the process.
The government established a working party of officials in late 95 to draw up regulations under the Act, in consultation with interested parties and to draft education programs aimed at the public, the medical profession and aborigines.
Again, the Northern Territory VES President, Lynda Cracknell, took an active interest and played a key role in keeping the whole process on track. A clear lesson was learned during this period and that is, there is no substitute for vigilance and attention to detail when dealing with the machinery of government.
Immediately prior to the Act being commenced on 1st July this year, opponents launched a legal challenge to the validity of the law and successfully waged a scare campaign to discourage doctors from participating in any of the procedures under the Act. This outrageous claim suggested that any doctor who acted to assist a patient die, could be liable for prosecution if the Act was subsequently found by the court to be invalid.
This ridiculous claim was bolstered by an announcement by a member of the House of Representatives, Kevin Andrews, that he would introduce a private member's bill in Federal Parliament to overturn the Territory legislation and that he would make that retrospective to 1st July.
Although a High Court appeal is still expected, the retrospective aspect of Kevin Andrews' proposal was later dropped. However doctors, being generally cautious people, all but one shied away until some of the heat and publicity blows out of the issue.
I did not expect otherwise, but we are now experiencing what will be an ongoing campaign to challenge the Territory legislation. I can foresee the hard core opponents to individual autonomy alleging malpractice, coercion or corruption of some kind on a regular basis. Claims of this nature, even if non specific, will find a willing media. I have no doubt allegations will be made under parliamentary privilege as well.
Our articulate, well funded and influential opponents will work hard trying to demonstrate that legal VE is destroying the very fabric of our society.
The church hierarchy in particular has too much at stake to allow the impression the legal VE is working satisfactorily.
History shows that if the forecast abuses do not occur, pressure to follow suit will grow in the states. If, or should I say when, the states one by one move to accept the electorate's wishes in this regard, it will be seen as a threat to the authority of the church.
To demonstrate how low they will sink, in responding to the assistance given to Bob Dent to die, Kevin Andrews has been reported as saying that his (Bob Dent's) doctor was not able to offer him any adequate pain relief, that his doctor may not have had the necessary expertise, that Mr. Dent may not have been one of the less than 5% of cases who do not respond to pain relief. He further said, "Some may think Bob Dent was a guinea pig in the euthanasia laboratory", and he concluded by speculating that because Bob Dent's open letter partly read like a medical report, it might not have been written by him, that if he was in so much pain, how could he even dictate such a letter?
We can expect this type of miserable, carping drivel from the hard core religious zealots like Kevin Andrews at every opportunity they get.
It is preposterous that a patient like Bob Dent, after a five year battle with prostate cancer, having had several operations, unsuccessful hormone therapy, 25 kg. lighter, impotent, unable to urinate, losing bowel control, under 24 hour nursing care and still on a roller coaster of pain despite a regime of 30 tablets a day, could have died on the day he did from the effect of a doctor administering pain killing drugs.
The Pope, the Archbishop, the AMA and Kevin Andrews would consider that as spiritually acceptable, morally responsible and lawful.
However, because Bob Dent asked a doctor to provide him the means to die, took a second opinion, considered palliative options, submitted himself to psychiatric examination, considered the implications of his family, endured a cooling off period and was then given the means to take his own life.
The hard core Christian minority was outraged.
The Vatican described Dent's death as "an absurd act of 'total cruelty'."
Cardinal Clancy said it was murder.
Northern Territory Bishop Collins said it was immoral.
No humane compassionate person could condemn Bob Dent or the way he died. If you are one of those who would have denied him a final moment of control and dignity, the chance to cry with his wife - then you have no heart!
I want to use this forum to expound my theory which reverses the traditional slippery slope argument that approving voluntary euthanasia must inevitably lead to involuntary euthanasia.
I believe that a major reason why a huge majority of Australians support the right of the terminally ill to choose their time of death, is because they are aware that many suffering patients are helped to die without their knowledge or consent, by doctors administering pain relieving drugs in doses which cause death, commonly referred to as "double effect". Provided the doctors intent was solely to relieve pain, the practice is legal.
It is also believed that many die following a decision to withdraw life support equipment, or not to resuscitate a patient.
Although no Australian statistics are available, anecdotal evidence would suggest that these practices are common and usually occur with the full support of relatives, having regard to the state of the patient and closeness of death.
The public believe that as individuals they should have the option of choosing the time of their own death when their quality of life is such that they no longer wish to endure the suffering. They do not want decisions about when they will die being made for them by doctors after they have lost competence or the ability to communicate.
It is therefore the knowledge that involuntary euthanasia is practiced, the necessity for it and the wish to take charge of our own end of life decisions, that motivates supporters of voluntary euthanasia.
I contend that pressure for voluntary euthanasia flows from the practice of involuntary euthanasia, not the other way around.
What the right to die movement needs to develop this powerful argument further is some credible statistics on the number of deaths involving medical intervention.
One other powerful argument for our cause which is undersold is the benefit which flows from peace of mind. Elderly Australians advise me that the option of voluntary euthanasia would relieve them of a great burden. Whilst in reasonable health now, many experience anxiety every day knowing the aging process cannot be halted. The possibility of a miserable lingering death is constantly on their mind.
They want the politicians to understand that simply by having an option, hopefully never to be taken, they could face each day with the comfort of knowing that they will not experience the suffering they have witnessed in others.
As one 90 year old wrote, "I do not fear death. I fear the way death will come".
The other group to benefit would be the terminally ill who are determined to commit suicide but are angry that they will have to take the fatal action before they really want to, for fear of losing control through hospitalisation.
We will never know how many past suicides could have at least been delayed while suffering was bearable, if they knew that assistance was legally available. No doubt some of them would have found that the end was not as bad as anticipated and help wasn't needed.
Nobody knows how many of the 2,200 suicides a year are related to terminal illness or concerns about the prospect of an awful death.
In the five years to 1994, 491 Australians 75 or older committed suicide. Surely it would be reasonable to assume that most of these lonely deaths were in response to the poor quality of life they faced.
We should tell the world that the option of voluntary euthanasia will extend lives, reduce violent suicides and comfort the elderly.
Its widespread acceptance would make the world a better place.
You are well aware that the Northern Territory Rights of the Terminally Ill Act faces the prospect of being vetoed by Federal Parliament following the introduction of a private member's bill.
The sponsor of that bill, Kevin Andrews, was described to me by one of his peers as a 'hard core Christian'. Now, I don't care how 'hard' a Christian Mr. Andrews is, I'm sure you don't either.
What I care about, is that Mr. Andrews has belatedly decided that Northern Territorians should have their recently acquired rights to take control of the dying process, taken off them.
Andrews was nowhere to be seen over the past eighteen months while the Northern Territory invited submissions, established a Parliamentary Committee, debated the issues, and voted on the subject. Subsequent to that, the legislation has been amended and on three separate occasions, unsuccessful attempts were made to scuttle it.
The entire process is about as public and democratic as you can get - yet Kevin Andrews, a member of Federal Parliament the whole time, did not become involved until the last minute.
If that bill succeeds, it will also prohibit the Northern Territory or the Australian Capital Territory, ever passing such legislation again. That would mean the 478,000 citizens of those two territories will become second class Australians in as much as the parliaments they elect will be denied authority that all the state parliaments have. When one of those states do legislate to decriminalise voluntary euthanasia, the whole 224 members in Federal Parliament will not be able to do anything to stop it.
Thank goodness for that. I think that state politicians, being more in touch with the electorate than any federal member, have the capacity to resist the dictates of the Church hierarchy and move on from talking about the principle of competent adults having autonomy over end of life decisions, and start talking abut appropriate conditions and safeguards which need to be imposed.
Even if Kevin Andrews succeeds in abolishing the Rights of the Terminally Ill Act, the momentum that has been generated cannot be stopped. The Australian states will enshrine the right to die with dignity because our citizens demand they do.