Humanist Perspectives: issue 196: A Farewell Note

A Farewell Note
by John Hofsess

John Hofsess
John Hofsess, circa 2006. [Photo courtesy of John Hofsess.]
I

am grateful to have received “a first-class death” with the legal assistance of lifecircle in Basel, Switzerland (February 29, 2016). There is, for me, no better way to die in the early part of the 21st century. I not only died on the right side of the law in Switzerland but on the right side of anticipated legislation in my native Canada.

I not only died on the right side of the law in Switzerland but on the right side of anticipated legislation in my native Canada.

Unlike other Swiss organizations that provide assisted death services (relying upon bitter-tasting barbiturate drinks), lifecircle offers an innovative method of self-administered lethal infusion using an IV. Employing the technique developed by lifecircle’s founder, Dr. Erika Preisig, unconsciousness is produced within 30 seconds; death occurs peacefully within four minutes; whereas swallowing barbiturates in any form can take 5-20 minutes before a person passes out and usually about 20 minutes (under exceptional circumstances, influenced by illness, up to several hours) for death to occur.

Preisig’s technique of causing “assisted voluntary death” (AVD) is a leap forward from the primitive method enshrined by Oregon’s Death with Dignity Act. Lifecircle also provides compassionate and experienced support during acts of AVD in accordance with Swiss Law; Oregon’s assisted suicide law does not provide any support during the dying process.

I chose to die at this time for three reasons:

  1. My health is steadily declining. In recent years, I have had two heart surgeries; two cataract surgeries; two melanoma surgeries; been diagnosed with peripheral neuropathy (legs, feet and now hands); severe sleep apnea (requiring CPAP therapy) and pulmonary fibrosis (usually terminal). In 2013, I was diagnosed with prostate cancer, deemed to be “aggressive.” Following 37 radiation treatments and 12 months of hormone implant therapy, I am still being monitored for further signs of cancer. In 2016, I was diagnosed for the third time with atrial fibrillation and following a 48-hour Holter Monitor test was informed that my condition is “serious.”

    Normally a patient in my position would be given blood thinners (to prevent blood clots) but I’ve had persistent rectal bleeding for four months while awaiting a colonoscopy so blood thinners were contraindicated. I am scheduled for a brain scan to determine if there’s an indication of blood clots there. During the last year memory functions have become severely impaired. From the moment I awake each day, I experience the dispiriting symptoms of peripheral neuropathy (painful cramps in my legs, unsteadiness when walking, sometimes falling) and wave after wave of dizziness caused by the atrial fibrillation barely controlled by betablockers. It’s as if my entire body is under siege by hostile forces. My medical costs since 2008 exceed $500,000; and that was in a province, British Columbia, where many of my medical expenses were not fully covered.
  2. I cannot justify imposing further health care costs upon my fellow citizens. I accepted medical treatments in 2014 for prostate cancer solely to “buy time” while working on a book (The Future of Death: True Stories about Assisted Dying) that describes an underground assisted-death service that I created and operated for several years with my former colleague, the late Evelyn Martens. I have continued to accept all medical treatments that my doctors recommend but keeping this old bag o’ bones alive is a Sisyphean task. Concerns about the cost of keeping me alive are my own and are in no way taken into consideration by lifecircle.
  3. (c) In addition (a strong secondary reason for my death), I’ve been advised by two prominent lawyers that publication of my writings could lead to my prosecution under current laws – either a charge of assisted suicide or possibly a charge of first-degree murder1 involving the death of the celebrated poet, Al Purdy. The spectacle of seeing a 77-year-old man in critically poor health being prosecuted for providing a compassionate death to a terminally ill 80-year-old man would be absurd – but nothing is too extreme for those who strongly oppose the concept of consensual death. At one time, books, plays and movies were censored, banned and prosecuted on the grounds that their sexual content posed a grave threat to society. That moralistic fever passed (in most western countries); our culture may now be more coarse and vulgar but there’s little discernible harm compared to what was once so greatly feared. As a society we are in the process of deconstructing our taboos involving death.
...publication of my writings could lead to [...] a charge of first-degree murder involving the death of the celebrated poet, Al Purdy.

The rationale for my death at this time is, in part, ideological, rather than a stereotypical case of a terminally ill person suffering excruciating pain. However the Swiss organizations that I am dealing with base their involvement entirely on my medical records – no matter what additional reasons I have for ending my life. I’ve been a member of EX International in Bern since 2009; and a member of lifecircle since mid-2014. I’ve been vetted by both organizations for a legally assisted death in the current year.

* * *

A crisis has existed for the past twenty-five years forcing catastrophically ill Canadians to suffer egregiously at the end of their lives. Parliament is commonly blamed for not responding more sensitively to the need for law reform in the area of assisted suicide and euthanasia.

Al Purdy was one of eight Canadians who received the benefits of my assisted death service; each death was carefully planned [and] identical in methodology.

While it’s true that Canadians have lacked political leadership on end-of-life issues, my observations over the past two decades lead to a different conclusion. During one time period (1992-94) right-to-die activists in Canada had an unique historic opportunity to substantially challenge laws prohibiting assisted suicide – and failed to do so by squandering the opportunity.

Three prominent academics who specialize in end-of-life issues, Wayne Sumner of the University of Toronto, Arthur Schafer of the University of Manitoba, and Eike-Henner Kluge of the University of Victoria, have publicly stated that no doctor who helped Sue Rodriguez to die would likely have been convicted.

The Right to Die Society of Canada had such a doctor on its Advisory Board, the late Dr. Scott Wallace, a former MLA and a well-known family physician who gave an interview to The Globe and Mail (Feb. 18, 1993) stating that if the Supreme Court of Canada did not allow Rodriguez to have a physician-assisted suicide, he would seriously consider providing her with the relief that she required.

If Sumner, Schafer and Kluge (among others of their profesional stature) are correct in their assessments, the combination of Rodriguez/Wallace could have nullified Canada’s assisted suicide prohibition in 1994 – and hundreds of Canadians who suffered greatly during the past 20 years at the end of their lives would have benefitted from a more resourceful and courageous effort to change the law. If Dr. Wallace was unable to keep his promise we would surely have worked together to find an alternate physician. Between 1992 and 1994, the Society had an extensive network of supportive contacts. Dr. Wallace never indicated to me that he had changed his mind or withdrawn his public offer.

That uniquely valuable opportunity for legal change was not pursued. A chapter in my book The Future of Death asks why – because no journalist or historian in the past 22 years has asked or attempted to answer that question. The answer is of vital importance in our social history: imagine the collective agony of hundreds of people who suffered due to decisions made long ago by individuals who took little interest in the fate of anyone except Sue Rodriguez.

Am I alone in being haunted every day by such suffering? I was motivated in my work for over 20 years by the horrible death of film director Claude Jutra (in 1986) whereas most other Canadians just moved on. I cannot explain why I care so deeply about hard and terrible deaths – and why so many others inside and out of the right-to-die field avert their eyes and limit their concern. Al Purdy was one of eight Canadians who received the benefits of my assisted death service; each death was carefully planned, identical in methodology, and none gave rise to suspicion let alone criminal charges. Purdy’s story is the quintessential example of all that I could do well.

Some may assume (wrongly) that I chose death at this time because I feared prosecution and conviction for my crimes. The truth is I’d expect to be treated kindly by law enforcement officials and had nothing to personally fear. But I cannot accept the risk of imposing upon Canadians profligate legal costs (2-3 million dollars is a conservative estimate for trials, appeals and even more for lifelong incarceration if convicted). The prosecution of Evelyn Martens on charges of assisted suicide in 2004 cost taxpayers an estimated $1 million for proceedings confined to one court in Duncan, BC. Criminal charges against me under present laws would likely be much more complex and expensive. If I were alive and in the process of being prosecuted, other individuals (such as Al’s widow, Eurithe Purdy) might be drawn into a legal quagmire as witnesses if nothing else; however, my death puts an end to all such possibilities.

As a right-to-die activist, I feel obliged to speak honestly about participating in assisted deaths of people who were suffering greatly; as a citizen, I feel obliged to spare Canadians the absurd expense of governments enforcing outmoded laws to silence and punish me.

Nonetheless, above all else, health problems compromise my desire to live. But I categorically reject the puritanical notion that a person has to reach a degree of extreme suffering before they have a right to die or qualify for an assisted death. The speech that I once wrote for Sue Rodriguez (“Whose body is this? Who owns my life?”) was an affirmation of personal autonomy.

I wish to thank Dr. Michael Irwin from the UK for accompanying me to Basel and subsidizing some of my expenses there: he has long been highly respected in the international right-to-die movement and it is an honour to die in his company. Dr. Irwin was Medical Director of the United Nations and for five years chaired the British Voluntary Euthanasia Society (now known as Dying in Dignity). He’s also a patron of the British Humanist Association. At age 85, and still suffering from the effects of a bad fall last year, Dr. Irwin made a difficult journey from Surrey to Basel to be with me.

I am especially grateful to lifecircle’s R. Habegger through whom I made arrangements for my death. For over a year, Mr. Habegger replied to my emails and other correspondence quickly and sensitively. Lifecircle sets a new high standard of performance among those who offer assisted-death services anywhere in the world.

I also thank the Oak Bay Volunteers (Victoria, BC) for their indispensable service in driving me back and forth for medical appointments, often at short notice, during the past seven years. OBV provides a transportation service for seniors free of charge and far more useful than anything offered by the provincial government. In particular I thank a volunteer who became a dear friend: Irene Robirtis, whose thoughtfulness extended far beyond the normal call of duty. Many a time, Irene dropped off a delicious homemade dinner, knowing my tendency in recent years to settle for a bowl of cereal or a can of soup because cooking for myself didn’t inspire much enterprise.

"I saw more compassion on the battlefield for the mortally wounded than I see in modern day England for the terminally ill.” ~Dirk Bogarde.

My last years were made wretched by poor health and poverty related to health care costs but I was blessed to have a few good friends who helped me survive so that my work could be completed. I’ve known Margaret Atwood professionally for over 40 years: I could not have completed my work but for her kindness (which does not imply an endorsement of my writings). I made a contribution to the future of death by spearheading the development of non-medical means of dying; offering my services to all Canadians including Al Purdy who, when suffering from metastatic lung cancer, chose me to provide him with “a good death.”

If Al Purdy and Sue Rodriguez could meet in an Afterlife, she might be amazed at what he says about an old man that she dismissed from her life as being of no significance compared to her upscale companions, Chris Considine and Svend Robinson. I stayed the course in order to help others die well; they did not.

Eventually, in Canada, there will be far more sophisticated assisted-death services than I provided and those services will be considered a normal part of life. I did my best to relieve suffering during a benighted time when the final years of many Canadians were a period of torture. I was responding to a human rights emergency: I strove to relieve suffering in a meaningful way at a time when most others (even people who regard themselves as “right-to-die activists”) did little or nothing.

My services were provided free of charge following the example set by the late Jack Kevorkian. I’m opposed to the commercialization of suicide and monetization of assisted death, as one finds in such books and videos as Derek Humphry’s Final Exit and other “do-it-yourself” suicide guides by Australia’s Dr. Philip Nitschke, sold indiscriminately to anyone of any age. I never found a single person who, given a free choice between a solitary “do-it-yourself” suicide and a compassionately assisted death in the experienced company of others, chose the Final Exit or DIY path.

In addition to Kevorkian, the other major influence upon my right-to-die activities was the late Dirk Bogarde, whom I met in England in 1993. Bogarde said to me: “If somebody asked me to help them commit suicide, certainly I would do it, if it meant 14 years I would still do it. There is no sanctity of life, no beauty or worth of life, when life becomes utterly intolerable and you are a ruin. I saw more compassion on the battlefield for the mortally wounded than I see in modern day England for the terminally ill.

My assisted death service was a national outreach operation: we went wherever we were needed. It made more sense to me that able-bodied operatives should do the traveling rather than those afflicted with serious illnesses.

One woman from Toronto, whom I barely knew, left a bequest of $25,000 to support our underground efforts. One cannot easily raise funds for an underground service engaged in criminal acts. My assisted-death service survived (precariously) due to random acts of kindness.

We did not say “yes” to everyone. One of our members, Rosemary Toole-Gilhooley, offered us $7,000 US (plus 5% of her estate valued at €627,113) if we would come to Dublin and help her to die. (Her controversial death became the subject of an opera in 2015, The Last Hotel, currently on international tour.) Evelyn Martens favoured helping the woman and was willing to go to Ireland, but Toole-Gilhooley’s frequent, high-pitched emails made me uneasy. Besides one of my protocols was that no client could be assisted unless he or she was visited at least twice in advance of an assisted death.

We operated on the “Robin Hood principle”: wealthier members of the society supported those less fortunate through donations and bequests. One woman from Toronto, whom I barely knew, left a bequest of $25,000 to support our underground efforts. One cannot easily raise funds for an underground service engaged in criminal acts. My assisted-death service survived (precariously) due to random acts of kindness. At one point, for about six months in 2002, I financed the operations of the service entirely on a credit card (belonging to Evelyn Martens) and on faith that our bills would be paid by those who appreciated what we were doing – and paid they were.

In my final writings, I maintain that physician-assisted suicide (PAS), while helpful, is not the whole solution: PAS is simply a stop-gap measure that restricts benefits to a few. (Oregon’s PAS law extends its benefits to people with cancer but excludes people with Alzheimers.) More significantly, in any jurisdiction where physician-assisted suicide has been permitted, there’s virtually no research done to create better, more pleasant ways of dying. I represented non-medical assisted death employing the best means possible through active, ongoing research.

* * *

The April issue of Toronto Life contains a detailed report of Al Purdy’s assisted death. If it were not for the courage of editor Sarah Fulford and others on the Toronto Life team, the true story of Al Purdy’s death would be unknown in mainstream media.

The definitive versions of all of my final writings, The Future of Death: True Stories about Assisted Dying, will be made available in e-Book form by Canadian Humanist Publications early in 2016 shortly after my death. I am grateful to Humanist Perspectives for providing the only source in print of my unabridged account about the death of Al Purdy. If it were not for the efforts of Canadian Humanist Publications, practically all of my writings would have disappeared without a trace. Thanks to Simon Parcher, Madeline Weld, Richard Young, and Richard & Réjeanne Thain for ensuring the survival of this voice in the wilderness.

Events beyond my control caused the collapse of the assisted-death service in June 2002; as a result, dozens of Canadians who yearned for “a good death” from that time to the present were forced backwards in time, doomed to use primitive or dauntingly expensive methods (ranging from solitary suicides to trips to Switzerland) to relieve their suffering: Bernice Peckford, Ruth Goodman, Dr. Donald Low, Edward Hung, Kim Teske, Eric McGuiness, Gillian Bennett, Kay Carter, to name a few publicly known Canadians who ardently wanted a change in our laws and who wrote their messages on the Wall of Human Suffering.

In addition, I have personally known dozens of other unpublicized individuals who wanted help in dying (since 2002) and who were forced to suffer because my assisted death service had imploded. I invested all of myself in creating an assisted death service that was profoundly needed and worked well; only to see it carelessly destroyed by a colleague – causing tragic repercussions in the lives of others that persist to this day.

Aldous Huxley
Aldous Huxley, author of The Doors of Perception [Wikipedia]

By dying at this time I am saving provincial and federal governments at least one million dollars in healthcare costs – assuming that I might otherwise live for another 5-8 years with chronically poor health. Criminal prosecution based on investigations into my published writings could double that figure ($2-3 million) as a burden to taxpayers. Stephen Harper’s government wasted millions of taxpayer dollars pursuing a wrongheaded “war on drugs” (principally marijuana) for the past ten years. The same government wasted more millions defending an obsolete prohibition against assisted suicide in our courts and dragged its feet throughout 2015 in complying with the historic Supreme Court of Canada ruling on assisted suicide on February 6.

Twenty-two years ago (February, 1994), the Canadian Senate passsed a motion “that a special committee of the Senate be appointed to examine and report upon the legal, social and ethical issues relating to euthanasia and assisted suicide.” The Committee, chaired by Senator Joan Neiman, heard testimony for 14 months from witnesses all across Canada. The Committee’s report entitled Of Life and Death was issued in June, 1995. The primary legal change that the Special Committee recommended was that a third category of homicide be created (where illness and compassion are involved), with a lesser penalty than second degree murder (which currently carries a 10-year mandatory sentence). The recommendation was never debated in Parliament; the Special Committee’s work cost taxpayers nearly half a million dollars.

Had that one legal change been made, I could have made my writings public, gone on living, pled guilty to an accurate charge of “compassionate homicide” (if need be) and participated publicly in rational discourse about my activities. But survival under unchanged, outmoded laws requires more strength than I have left. Canada is not yet a country where assisted death is well understood and comfortably accepted; anyone who is ahead of their time is likely to be punished for nonconformity (by the news media if not the courts) until a majority of the population catches up.

Edmund Burke once wrote: “Bad laws are the worst sort of tyranny2…People crushed by law, have no hopes but from power. If laws are their enemies, they will be enemies to laws; and those who have much to hope and nothing to lose, will always be dangerous.”3

I am dying now so that my final writings may be published in a timely manner without the costly distraction of prosecuting me. Now more than ever, Canadians have a right to know and a need to know what a modern version of the Underground Railroad managed to achieve.

Postscript, February 2016

A countdown app tells me how much time I have left: 27 days, 10 hours.

In the final weeks of my life I was invited to visit a researcher from the NYC-Connecticut area, Dr. Katherine MacLean. I became aware of her work through an article in The New Yorker (“The Trip Treatment,” by Michael Pollan, Feb. 9, 2015).

Dr. MacLean specializes in “pre-death therapy for cancer patients” using psilocybin, a controlled substance found in “magic mushrooms.” I watched a YouTube video of a speech she gave4 in an advanced stage of pregnancy and was struck by her statement: “If you ask people if they would take psychedelic drugs when they are healthy, most say no. But when asked if they would take psychedelics if they were dying, most people say yes, absolutely.” She reported that a high percentage of her test subjects (in studies supported by Johns Hopkins University Hospital) said that “their lives improved and that the effects were long lasting.”

During the final months of my life, I’ve experienced deep disappointment over how little I’ve achieved in the right-to-die field (compared to where I seemed headed until 2002). I’ve also felt resentment towards those who caused an unique service of assisted death to fail.

But disappointment, resentment, bitterness and sadness are not normal components of my true self. I had no wish to be consumed by negative thoughts and feelings as I approached my death but I didn’t know how to transcend what seemed like necessary reactions to the callousness or obtuseness of others.

I had to find out if Dr. MacLean could help me. I wanted to know if it’s possible to undergo a transformation of mind and personality to the degree that most psychic wounds are healed.

If the combination of psychedelic medication and psychotherapy could improve my quality of life then I would have something additional to contribute to my “future of death” explorations. Aldous Huxley (in The Doors of Perception, 1954)5 was perhaps the first serious writer to propose a research project involving the administration of psychedelic drugs to terminal cancer patients in the hope that “it would make dying a more spiritual less strictly physiological process.”

Dr. MacLean was kind enough to invite me to stay for 3-4 days on a farmstead in Connecticut. I need to know: can a phoenix rise out of the bitter ashes of my life?

I shall record the answer – whatever it may be – in the final pages of my book while traveling to lifecircle.

Perhaps there is something beyond “a good death” (a legally adminstered clinical procedure): something better than merely good. If we travel further into uncharted territory, passing through an enchanted forest, entering a secret garden where weary souls may rest a while, who knows what beauty we may behold – simply by opening our minds?

~ John Hofsess (age 77), Victoria, BC; Basel, Switzerland.
NOTES:
  1. Al Purdy was rendered unconscious through Rohypnol at the outset of the dying process.
  2. Speech at Bristol Previous to the Election (September 6, 1780).
  3. Letter to Charles James Fox (October 8, 1777).
  4. https://www.youtube.com/watch?v=RqaRPOzZJ_8 (Sept 15, 2015).
  5. For a free downloadable copy of The Doors of Perception, see: http://psychedelicfrontier.com/wp-content/uploads/2013/05/The-Doors-Of-Perception-Aldous-Huxley.pdf

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