ISSN 0742-535X December 1999
-- Step Forward or Step Backward
'Caring Friends' Program Takes Off
Productive Paris Meeting
Death of Long-time Campaigner Marilynne Seguin
Conference on New Ways of Self-deliverance
Travel Support Available for Boston
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The year 2000 will be a busy one legislatively and in the courts for the issue of physician-assisted suicide. Whether the movement can hold on to its progress and take further steps will be known by the end of the year.
In February, the US Senate will consider the Pain Relief Promotion Act, which the House of Representatives has already approved. This proposed law - despite its gentle sounding name - would make it possible for doctors who assist a terminally ill person die using 'Controlled Substances' (usually barbiturates) to get up to 20 years imprisonment.
This would effectively neuter the Oregon Death With Dignity Act, l994, unless alternatives to Controlled Substances can be found. In l998, fifteen Oregonians chose to die with the help of their doctors, and probably the same number in l999.
Supporters of the Pain Relief Promotion Act claim they have enough votes to pass it. Other people point to the record of the US Senate as a more thoughtful and careful chamber than the House. (For example, the House impeached President Clinton; the Senate refused.) Will President Clinton sign it into law? Judging by his past record and statements he probably will.
If the Act does become law, the State of Oregon will immediately challenge its constitutionality in the US Supreme Court. Oregon governor John D. Kitzhaber, MD, has already ordered his Dept of Justice to start work on that possibility. Such a case would also arouse the backing of the right-to-die movement in America.
The Act's supporters argue that the Federal Government has always controlled dangerous drugs, and Oregon can't be allowed to slip past. The retort to this is that the Federal Government has never interfered with the practice of medicine at state level.
A ray of hope for the law being overturned is that the Supreme Court in recent years has often 'killed' Congressional laws that usurp local determination. Thus the stage is set for a controversial battle.
In January next year, Assemblywoman Dion Aroner is scheduled to re-introduce in California a bill permitting physician-assisted suicide similar to Oregon's. It passed through two important committees last year and then it was held for further consideration in 2000. Such a bill has never previously reached that far in California.
Americans for Death With Dignity, and Friends of Dying Patients, both California organizations, have been working hard on lobbying in the legislature and gathering endorsements from organizations involved in health matters.
On the other side of America, Mainers for Death With Dignity have raised ample signatures for their Oregon-style bill to go before the electorate at the general election in November. Twice the Maine legislature has turned the law down, but polls show that a majority of the citizens want it.
All voters will be asked the question: "Should a terminally ill adult who is of sound mind be allowed to ask for and receive a doctor's help to die?"
In Alaska, the State Supreme Court will be asked to overturn a decision in September, l999, of the Superior Court that there was no state constitutional right to physician-assisted suicide.
In the second half of 2000, Dr.Jack Kevorkian's appeal against conviction for second-degree murder is likely to be reached by the Michigan Appeal Court. He is currently serving a 10-25 year jail sentence for injecting a dying man, Thomas Youk, with lethal drugs at the request of Youk and his family. If he loses his appeal, Kevorkian cannot ask for parole until he has served six years confinement.
In the spring in the Netherlands, the Dutch Parliament will consider codifying the practice voluntary euthanasia and physician-assisted suicide, which has been permitted for nearly 20 years. A controversial clause in the draft of the new law that would include children has been dropped from consideration.
One of the reasons for the reluctance of Dutch doctors to report euthanasia cases to the Dept of Justice, as the rules require, has been that the action of hastened death, however well justified, remained a crime. It has been a key criticism that no one really knew the extent of the practice. The new law, if passed, will open euthanasia events for further study on a fuller scale.
5 Dec 99
The first year of operation of the 'Caring Friends' program of the Hemlock Society has been a significant success. Scores of Hemlock members in terminal conditions have been counseled about self-deliverance and assisted death, with some dozen dying with the dignity and control which they desired. The Hemlock national membership was informed at the end of l998 that it was now Hemlock policy that no member should have to die alone and that any who chose to hasten dying, when suffering an incurable illness, would have the availability of helpful advice to make sure no attempts were botched.
A three-day session was held for 30 members to be trained as 'Caring Friends' in how to help a patient obtain the necessary medication and how to handle the communications with medical caregivers, hospice and funeral directors.
Hemlock has a full-time employee at head office in Denver (Lois Schafer) who coordinates the applications, secures medical records, communicates with the applicant, and then informs an executive committee of the case history, which then decides if and how the person should be helped.
Richard MacDonald, medical director of Hemlock, said: "The most satisfying aspects at any events which I, and others, have been privileged to attend, have been the peaceful nature of the dying process and the rapid progress to a very deep sleep that has followed consuming the medication."
Hemlock's program is similar to that conducted for some time by Compassion in Dying. Their program has been mostly on the West Coast of America, while 'Caring Friends' is nationwide and is in no way competitive with Compassion as it is for Hemlock members only.
Exit Italia made its first appearance at the European section of the World Federation at the meeting in Paris on 16 October l999.Emile Coveri gave a verbal report on the movement's progress in Italy.
Another person attending was the president of the French society, ADMD, Henri Caillavet. He is a former minister and a member of the National Committee on Ethics.
Delegates from Norway, where a doctor is awaiting his appeal against conviction for helping a patient to die, were particularly anxious to hear about similar cases in other countries.
It was agreed that the European section should work harder to make itself known to the European Parliament and the Council of Europe. To this end, the existing leaflet would be updated and redesigned.
Meinrad Schar told the meeting that progress had been made over the complaint by EXIT (Suisse Romande) that the German-speaking group in Switzerland, EXIT (Deutsche Schweiz) was using the name EXIT only, and causing public confusion. He expected to be able to report back in a month that the dispute had been settled.
The meeting was held in the offices of ADMD, with their vice-president, Anne-Marie Dourlen-Rollier hostess for the day. At the close of the meeting the delegates voted thanks to ADMD for their fine hospitality.
Itwould be prohibitively expensive and troublesome to make and send to you numerous copies of this World Federation Newsletter. And we would not know just how many copies you can make use of. But there is no copyright on this newsletter, and it is printed in clear black type on white paper. Thus you are free to make as many copies as you wish to distribute to your colleagues. Print shops nowadays will run off copies in minutes at a very small charge.
A great friend to many of us in the World Federation died on September 9, 1999, a date of her own choosing. Marilynne Seguin, who founded the Dying With Dignity organization in Toronto, Canada, had been Executive Director of that group for 18 years when ill health forced her to reduce her commitments in 1998.
She was eulogized at a "Celebration of Her Life" on September 18, when many friends and family met to remember her. Some of the speakers told of the many years when, in spite of failing energy due to decades of personal health problems, she would summon the strength to work with those near the end of life who sought her advice and help. She had been at the bedside of over 2000 dying people. It was noted that Marilynne had a true sense of the value and worth of choices in dying, and never sought publicity or sensationalized the death of any of those with whom she worked. She set goals that were almost impossible to attain, yet accomplished many of them.
A reporter, who had often written articles about Marilynne in a Toronto newspaper, related that she stood out in his memory, even more than many celebrity names with whom he had come in contact during his time reporting on ethical and religious subjects, because of her remarkable "inner core of values".
His article that reported her death was afforded front page headlines as he chronicled her last days of life and her managed dying process, which Marilynne orchestrated and controlled. He made note of three "C's" that related to her life:
1. Compassion, which she had in enormous amounts. This extended even to the day she died when she was so concerned that none of her friends present would be hurt in any way by attending her.
2. Common sense, exhibited so frequently in her approach to all aspects of her work. She never lost sight of the goals and ensured that progress would not be affected by activities that might detract or diminish the rational aspects of the movement.
3. Courage, not only in handling her own pain and indignities of failing health, but in facing the rigidity of those who opposed her activities, including the leaders of government, religion and medicine.
Besides the hands on help that she generously gave to those seeking assistance, Marilynne played a large role in the changes of end-of-life care that have occurred in Canada, as in other countries, over the last two decades. From helping to develop advance directives and encouraging medical professionals to discontinue futile treatments and improve terminal palliative care, she carried her message to the political arena, working tirelessly to have legal changes that would permit physician-assisted death. She spoke at many medical and legal meetings as well as to lay groups, and developed DWD of Canada into a national society.
Having been privileged to know Marilynne as a friend while sharing her dream of legal changes that would permit true choice at the end of life, I was honored to be present with other friends as she fulfilled her wish to be free from the many difficulties her illnesses brought her in the latter years.
In order to carry on her legacy, I ask that those of us in the World Federation of Right to Die Societies maintain her vision of changing the laws, not just in Canada but thoroughout the world.
New ways of ending one's life were revealed at a remarkable conference in Seattle, Washington, November 13-14, held by the Self-Deliverance New Technology Group (NuTech) comprising certain right-to-die organizations in the USA, Canada, Australia, France and Germany. The latest equipment for self-deliverance was demonstrated by its various inventors, and analyzed for practicality by 28 experts, including three physicians. Journalists from the USA and Australia were allowed to attend part of the conference.
The theme of the conference -- finding non-medical, non-criminal ways of choice in dying -- meant that some groups, such Compassion in Dying and Oregon Right to Die, were not invited. They work for regulated, medical-only assisted suicide while this conference was about 'self-deliverance' and self-help. Neither was the World Federation of Right To Die Societies represented as its policy involves only legal physician-assisted suicide. The Hemlock Society sent five top officers to the conference.
For decades, believers in voluntary euthanasia have talked about devices for ending a painful life with inert gases or diving equipment, but the introduction of the Hyde-Nickles Bill in l999 into the US Congress has accelerated such research because the Bill is intended to prohibit the use of barbiturates (a government controlled substance) for use with physician-assisted suicide. The Bill is expected to be voted upon in February, 2000.
Drugs other than barbiturates are virtually useless for assisted suicide. Throughout the Western world, governments have tightened restrictions on the sale of any drug containing barbiturates.
Two famous helpers of terminally ill persons have been stopped in America: Dr. Jack Kevorkian is serving a ten-year prison term for second degree murder, while Dr. George Reding has gone into exile to avoid a charge of murder. Both doctors performed voluntary euthanasia in what reasonable people would consider justifiable, compassionate circumstances.
Many doctors are reluctant to help suffering terminal patients to die because of the increasingly threatening backlash from the law. Law reform for assisted dying has been rebuffed by the parliaments and courts in Britain, Canada, and Australia, forcing people to use what might be called 'underground' tactics and methods.
The Self-Deliverance New Technology Group (NuTech for short) has been meeting throughout l999 debating and testing alternative means of ending an unbearable life quickly, painlessly and with dignity.
Much attention has been focussed on 'DeBreather' equipment, which has been used in at least six cases of assisted suicide so far in the USA.Here is how it works:-
The average person in a stationary position consumes between .25 and .5 liters of oxygen each minute. Deprive a person of this element for 4-5 minutes and they die from hypoxia - oxygen starvation of the body. (Oxygen is a colorless, tasteless, gaseous chemical element that occurs freely in the atmosphere. One fifth of our atmosphere is oxygen.)
The DeBreather has a rubber facemask- the sort used by dentists and anesthetists-- fitting over the nose and mouth but not the eyes. It is held in place by two rubber straps leading to the back of the head (similar to a painter's mask or filter mask).
A 12-inch length of plastic, concertina piping leads from the facemask to a clear plastic canister. This is filled with chemicals resembling popcorn, which are either barium hydroxide (Baralyme) or sodium hydroxide (Sodasorb). This chemical is the cleanser, or 'scrubber,' of the oxygen from the person's breath.
From the scrubbing canister the depleted air travels on to a vinyl bag resembling a small water carrier. This bag collects the air and recycles it to the facemask for rebreathing - but this air is deadly because it contains no oxygen.
The person is taking breaths apparently normally, but without oxygen people will die in a matter of minutes. How long it takes to die might vary from 4 minutes to 10 or so depending on the person's lung capacity and their fitness and frailty.
A meter can be linked to the facemask if the person wishes to monitor the amount of oxygen they are receiving while the equipment operates. For others to know the point of death, a heart-rate monitor can be attached to a chest strap or finger monitor. But this extra equipment is optional.
Observers of the cases in which the DeBreather was used report that death was quick and painless. In contrast to Dr. Jack Kevorkian's famous 'suicide machine,' which used drug substances controlled by law, provided by him but released into the body by a patient-activated switch, no drugs of any sort are used in the DeBreather. The patient dies from his or her own breath coming back without oxygen.
This new way of rational suicide has been developed in Victoria, BC, by a team led by former journalist John Hofsess, aided by engineers with experience in deep-sea diving systems, physicians and anesthesiologists. Other people in the right to die movement in North America have sat in on the development as advisors. In l991 John Hofsess founded the Society for the Right to Die, Canada. Financial backing for much of NuTech's work has come from the Euthanasia Research & Guidance Organization (ERGO!) of Oregon, which also sponsored the Seattle conference.
Other, even simpler methods of ending one's own life quickly and painlessly have also been developed by the NuTech team members.
Committing suicide by using a plastic bag secured around the neck has been well known since it was described in the book "Final Exit" first issued in l991. Persons who are unable to get the cooperation of a physician, or have no access to barbiturate drugs, yet wish to die to escape further suffering, commonly use this plastic bag technique. But it takes at least thirty minutes before death is achieved through deprivation of oxygen.
This latest technique reduces the time to about five minutes by use of helium or other inert gases such as Helium, Argon, or Nitrogen.
Helium - an inert gas, which is neither explosive nor flammable and is odorless and easy to breathe - can be acquired in toy stores in lightweight, compressed gas cylinders, which come included in carry-away party balloon kits for around $20.
A four feet long piece of thin rubber tubing bought from a hardware store is needed to connect the canister up to a person who has a plastic bag loosely over their head. When the bag is tightened with a rubber band, or other fastener, around the person's neck, with the pipe leading inside, the person by hand turns on the gas tank, which start full for maximum effect. The bag inflates with deadly gas and the person is quickly overcome.
Or the person wanting a hastened death could purchase a cheap facemask and pipe an inert gas directly pipe an inert gas directly into the mouth and nostrils. Contact with enclosed inert gas is lethal; released into the open air, it quickly disperses.
As with those forms of suicide using gases, if the person is interrupted just before the point of death, and survives, then brain damage and paralysis is likely. This does not happen with barbiturates.
These techniques - in legal terms - are straightforward suicide, which is not a felony. There need be no helper, which sometimes can be criminal. The presence of others in the room giving moral support is not felonious provided they do not physically assist. No drugs - controlled, banned, prescription or non-prescription - are involved.
The inert gas suicide technique has an advantage over the DeBreather in being simpler, cheaper, and easier to use. Plus, the gas can be administered either by injecting it into a plastic bag loosely over the patient's head, or pipe an inert gas directly into the mouth and nostrils. Contact with enclosed inert gas is lethal; released into the open air, it quickly disperses.
Some observers at the conference said that the inert gas method on the occasions they had used it produced the same rapid, peaceful death.
Why this current emphasis on self-deliverance by dying patients? Law reform in this controversial field is expected to take many more years, despite 75 percent of public opinion in most Western countries favoring change. Political and religious institutions have thrown their traditional power against permitting choice in dying. Triggering the backlash has been the successful and much publicized passing of euthanasia laws in the Northern Territory in Australia and in Oregon, USA. The Northern Territory law was quickly quashed by the Federal Parliament, and the US Congress is threatening to do the same for Oregon's early in 2000.
Nobody at the remarkable Seattle conference was giving up on the continuing fight for democratic law reform on justifiable, voluntary euthanasia. Fueling the 'self-help' dynamism is a feeling that in the meantime there must be a humane response to those suffering during the intervening years.
Meanwhile, medical scientists and pharmaceutical experts around the world are determinedly searching for a drug, or combination of drugs, which are lethal but are not drug substances controlled by law. So far the hunt for the so-called 'magic pill' for quick and painless death has been fruitless hence the heightened interest in the DeBreather and the inert gas ways of gaining release from terminal suffering.
Among those at the Seattle conference was Dr.Philip Nitschke who helped four people to die when voluntary euthanasia was briefly legal in the Northern Territory of Australia. Now Dr. Nitschke holds 'euthanasia clinics' throughout the country giving advice to dying people but not directly helping them end their lives.
Another famous practitioner of lawful euthanasia lending his vast experience to the conference was Professor Pieter Admiraal, MD, from the Netherlands.
Organizations attending the conference were: Last Rights Publications (Canada), Hemlock Society USA, ERGO!, Compassionate Chaplaincy, Dying Well Network, Right to Die Society of Ottawa, DGHS, (Germany), the Euthanasia Research Foundation (Australia), plus many experts from different health sciences. This conference had no official connection to the World Federation of Right to Die Societies, and only some of the delegates were from member societies.
© Copyright, l999, Derek Humphry.
3 December l999.
World Federation of Right to Die Societies (WF)
The WF seeks a motivated, self-starter for the newly created position of Development Officer. This is a part-time position for a person able to work from home, in any country. The position will initially be for one year.
The aim of the WF is to assist member societies, which are scattered throughout the world, in their efforts to gain self-determination in dying.
The aim of this role is to provide information, support and services to member societies and to others who are interested in the Right-to-Die movement. Key tasks also include the creation and maintenance of a web site and constant monitoring of the media in order to identify opportunities for WF involvement.
The successful candidate will possess experience in web design and development, good project management skills, the ability to work independently and pro-actively, excellent verbal and written English skills and a strong desire to assist with bringing self-determination in dying within the law.
The Development Officer will report to the President of the WF, who is currently based in Australia. A challenge for this role is that most communication will be via email and fax.
To apply for this position or for more information on the aims of the WF and a Job Description, please contact Libby Drake at firstname.lastname@example.org
Fax +61-2-9802 5340
Phone +61-2-9874 9895.
The Board of Directors wishes that all member societies could send a representative to the Boston conference in September 2000. In some instances, particularly in smaller societies, this is not financially possible. Therefore a travel support fund has been set aside for qualifying applicants.
Societies wishing to apply for the support should limit their request to travel expenses only (i.e. air ticket) and the Board would prefer to see that the applying society covers part of the cost from own funds. This would make support available to as many societies as possible.
Applications should include:
the total cost of the travel
the amount requested
a copy of the financial statements for the last financial year (audited if an auditor was involved)
a short explanation to justify the request
Applications should arrive no later than January 31, 2000 to the Treasurer:
16A Ha Daliyot
Ramat Poleg 42650
E-mail fax: +972-9-8981425
The Board will answer to all applying societies by February 28, 2000. The awarded support moneys will be disbursed in Boston during the conference.