Sunday, February 11, 2024

Flashback 1987: Ending the agony of terminal illness by suicide — Hemlock Society fights for the right to die.

 
"The Death of Socrates," by Jacques Louis David (Metropolitan Museum of Art)

     My colleague Tina Sfondeles wrote an important story on a pending law that would let terminally ill Illinoisans end their lives. When I read it, I immediately thought of this story, written a few weeks before I was hired by the Sun-Times. It made an impression on me. I can still remember Don Shaw pulling that big amber bottle out of the drawer. I also distinctly recall thinking, "These people are hot to kill themselves." I was 26. Now that I've had 37 years more of experience, I know that one reason the American medical system is the cruel, expensive farce it often seems to be is because control is wrenched away from the people who should exert it. 
     Don Shaw died at 81 in May, 2001, at a senior care facility in Evansville, Indiana. The Hemlock Society was renamed End-of-Life Choices in 2003, and the next year became Compassion and Choices. 

     Asked what he would do if he ever was struck by a catastrophic illness, Donald Shaw pulls open a desk drawer and reaches for an amber plastic bottle filled with 50 red capsules. Each capsule contains 100 milligrams of the tranquilizer Seconal.
     "What I would do is take it out of the little shells — a hell of a job — and mix it with honey or ice cream," he says. "The stuff is bitter."
     Shaw goes on to describe how he would drink whiskey, to multiply the fatal effect of the overdose, eat a light snack and take an antiregurgitative to help keep the poisonous mixture down.
     An amiable, robust man of 67, Shaw talks casually about the prospects of suicide, as do many members of the Hemlock Society, an international group advocating that terminally ill people should have the right to kill themselves.
     The Hemlock Society reports having 13,000 members, most of them in the United States. About 300 of those members are in Illinois, mostly around Chicago.
     Shaw, a former Episcopalian priest, is chairman of the Illinois chapter. His interest in the subject of escaping terminal illness through suicide began after his mother's protracted death.
     "My mother died of cancer when I was 25," he says. "My aunt and I took turns caring for her 24 hours a day. Until one day she said: `Don, I'm going to stop eating. I just want to die.' And for me it was absolutely sensible."
     Members of the Hemlock Society plan for their own deaths, convincing relatives not to take "heroic" measures to keep them alive, stockpiling fatal doses of drugs and lobbying for a variety of "right-to-die" issues.
     They support legislation, such as the Illinois Living Will Act of 1983, which created a document where signers request "that my moment of death shall not be artificially postponed . . . if at any time I should have an incurable injury, disease or illness judged to be a terminal condition by my attending physician. . . . "
     The society was formed in 1980 by Derek Humphry, a British journalist who assisted his terminally ill wife in killing herself. His book chronicling that experience, Jean's Way, and other writings, including Let Me Die Before I Wake, a guide to suicide methods, are distributed by the society.
     The name of the society, "Hemlock," refers to a poisonous herb of the carrot family. The poison is famous as being the one Socrates, the Greek philosopher, was forced to drink in 399 B.C., a suicide that ironically goes against Hemlock Society principles, which state that suicide should be voluntary and not due to any emotional, traumatic or financial reason unassociated with terminal illness.
     "I'm sorry we have the name, but I'm perfectly willing to make the best of it," says Shaw.
     The Illinois chapter holds monthly meetings, where members watch films related to the right-to-die movement, discuss issues and socialize.
     "It's an interesting group of people," said Louise Haack, a retired teacher. "I've been to two meetings; it's nice to be with people of like mind. So often the perception is that this must be a bunch of Gloomy Guses. But this is not the case. The people I have met through Hemlock are very lively indeed, and most are bent on living a long and productive life."
     Haack, 62, has her own stockpile of drugs, but worries about the drugs losing their potency over time.
     "I probably do not have a lethal dose of anything at this point," she says, "because medicines do become outdated. You need a spectrum of medical doctors who will prescribe 30 of this or 30 of that so you can acquire a lethal dosage, and that is a handicap nowadays."
     Like Shaw, Haack's interest in the Hemlock Society came from the death of a parent. Five years ago her father died of colon cancer at age 88.
     "That made me realize it would have been nice if he and I could have had a conversation about how we'd like to leave this earth," she says. "Fortunately, we had pretty good nursing-home care, and the principal physician in charge was in tune to not having this old gentleman returned to the hospital for any reason. The doctor knew how I felt, and had some discussions with the nursing-home staff. Nothing in writing, but a tacit understanding.
     "My father was struck with influenza, which could have been `cured.' They could have called for an ambulance, taken him to a hospital, all that garbage. But they did allow my father to die, without making an issue of it, and I'm very grateful for that. He did have a peaceful departure, certainly compared to what it could have been. A certain amount of homework can prevent the horror stories we have heard of.
     "A friend had mentioned the Hemlock Society. I wrote away for literature and joined. I've been very, very impressed with the thoughtfulness and leadership and care with which these subjects are being discussed. I don't thing everybody needs to make this commitment, but everyone needs to look at this issue and think about it."
     According to Shaw, while death was once an accepted part of the cycle of life, today it is a distant and taboo subject.
     "Death is a part of living, a part of life, Shaw says. "In most cases it's welcome. But still death is something that is not talked about, not prepared for. One reason is that people don't die at home anymore. They used to die at home. Everybody knew what death was about. Children saw it. In the old days, there was no place else to die. I think the problem began when death was removed from home and placed in the hands of specialists, hospitals and funeral directors."
     Shaw has certainly planned out his own death in some detail. Not only has he arranged a convenient means of suicide, should the opportunity to kill himself arise, but he has planned the ceremonies surrounding his passing. His tombstone is already in place, in a cemetery in Enid, Okla., and preparations have been made for his wake.
     "A cocktail party: hors d'oeuvres, some of my special music," he says, smiling at the thought. "It's going to be a joyous occasion, if I die soon enough. If I get to be 85, they're won't be as many people there.
     "I have here my suicide letter to my family," he continues, producing a 1,200-word document beginning "Dear Family and Selected Friends" and dealing mostly with Shaw's belief that suicide is a valid avenue should "the dissatisfactions of life significantly outweigh the satisfactions."
     When asked what he meant when he referred to a suicide-inducing "catastrophic" illness, Shaw said it was "some physical condition the treatment of which I was not able to pay for."
     It is an attitude that is questioned by some people.
     "When do you decide a disease is life- threatening?" asked Ken Howard, head of the clinical psychology department at Northwestern University and an expert in the area of suicide. "I see a potential harm in having a support group that says whenever life is too hard for you - you have skin cancer that may or may not metastasize - you monitor it yourself, and whenever you get too scared go ahead and take these pills. I don't think that's good advice.
     "I'd like to see the extent that their plans are really followed through," Howard said. "My experience with people who have taken that position is once they get the first signs of a life-threatening disease they do what everybody else does: fight dearly."
     Howard said that, rather than being ultimately concerned with death, Hemlock Society members instead are trying to gain a feeling of control over their own lives.
     "One way to make peace with the fact that you're going to die is to say you have the power to make that happen," he says. "It's a case of ultimate control; one way of saying: This is my life, and I have some say in it."
     And in fact, Shaw reports that, in the five years of his being chairman of the Hemlock Society in Illinois, he has never had a member commit suicide.
     Shaw's son, David Shaw, 37, a lawyer in Evansville, Ind., finds himself in general agreement with his father's principles, but also suspects that there are other issues at work, beyond avoidance of terminal illness.
     "I'd say that's probably a fair observation," says David Shaw. "If he's going to go, he'd rather do it himself. I'd say it's a matter of control. I'd think he'd like to go out with style."
            —Originally published in the Sun-Times, March 3, 1987

12 comments:

  1. I am almost 79 and have several chronic conditions. I already know that I will refuse treatment such as dialysis, should that come up. I also know that suicide is awful for the family and friends left behind, which is why we, as a society and as individuals, need to get over our reluctance to talk about death. Choosing ones own death is an absolute right, and not just in cases of terminal illness.. I am a member of Compassion and Choices, tho I have no stockpile of drugs. There is a Facebook group called Final Exit that is worth checking out for information and support.

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  2. My problem with suicide is is I've seen two of them. One was a guy who hanged himself on the back porch of a building I worked in, I saw him hours after he did it.
    That was bad, but then I had the misfortune of seeing an old man lay down in front of a Metra train.
    Now I never knew either of them & the sole person I felt sorry for was the engineer on the train, as he had no chance to prevent it. And the thousands of us who had our day fucked up by that selfish old man, as Metra's policy is to wait for the medical examiner to show up & declare the person dead, which is obvious to anyone with a brain. I've read that in NYC, they just stuff the dead body out of the way & get their trains moving in 15 minutes, Metra takes 90 minutes to two hours to do so!
    So I just can't imagine killing myself, no matter how bad the pain could be.

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    1. You seem more concerned with the train delay and the thousands who were "fucked up" by that old man's final act, than about the act itself. You can't imagine committing suicide, merely because you don't want to inconvenience countless others? There are other methods...many of them...and one can easily do the deed in quiet solitude, instead of publicly and on a railroad track

      Unless you are completely and totally alone in this world, suicide is like a stone thrown into a pond...the ripples left behind will eventually reach and affect those who knew you. I think almost everyone...no matter how briefly...and even if only once in a lifetime...has entertained the thought of taking their own life. But your life is more than your own. it also belongs to others. Hell, I could do it tomorrow. But then I would also be killing a part of my wife...the part of her that she has invested in me over the last three decades. And I just can't do that. Maybe that's one big reason why I'm still here.

      As a lifelong railfan, lying down in front of a train, or running to embrace it, would be the ultimate and final irony. But in light of the recent resurgence of Republican fascism, perhaps there's another idea. Think of all those Hamas freedom fighters in Israel...specifically, the ones who have strapped on those belts of explosives...and use your imagination. There might even be an uptick in such acts in the coming years, as the left-leaning contingent of my age cohort reaches the end of the road. Long story short: Boomers becoming boomers. (Sorry...just couldn't resist it).

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    2. Are you fucking kidding?
      That old man was a selfish bastard for doing that & what he did to the engineer! Many never run another train again because of that trauma they've seen!
      And at least 10,000 people had their commute home fucked up, due to that!
      There were dozens of other ways he could've killed himself, since he lived at Hollywood & Sheridan, he could've walked to the lake & jumped in & drowned, thus only inconveniencing the cops & fireman who had to recover the body.
      And then I found out on Monday, that his family was there & was insisting it was an accident. Since Metra has cameras recording everything in the front of their trains, they really need to release it to the public instead of that absurd "pedestrian incident" crap. It happened 50 feet south of Devon & Lehigh, no crosswalk there!
      BTW, his was the first of numerous suicides set off by Metra's then boss Phil Pagano who ended his life in front of one of his own trains just a week earlier, when Metra's accountants discovered he had swindled Metra out of over a quarter-million bucks, due to the fact that he was a bigamist with two entire families to support! The entire Chicago media covered up the bigamist part, except for Greg Hinz in his Crain's column a couple of weeks later.

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    3. I've seen suicide-by-train, too...by the way. On the platform under State Street. I was riding in the "railfan seat" on one of the old CTA 6000s, the "Spam Cans" from the 50s. So I was even closer than you were. I saw what the motorman saw, but from a different angle.

      Was already late for work, so I pulled the big red "cherry" on the blinker doors and sprinted across the platform and up the stairs, just as the screaming started. Best thing to do at a train suicide' is to get the hell outta Dodge and keep moving. Which I did. I recommend it highly. Slept fine that night.

      Around the same time (fall of '75), I saw a would-be jewelry store robber get shot in the head (by the owner) at Madison and Dearborn, from a few feet away. And later on, I saw a couple of charred bodies carried out (uncovered) from a burning building at LaSalle and Division. Went back to the bar and got very drunk.

      It all happened within a few weeks' time. I had just moved back from Florida. The next 17 years were not nearly as grisly. Hey, dude, welcome to Chicago...where shit happens.

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  3. This story really strikes a cord for me. A few actually a few.
    I've been an avid outdoorsmen and have an end of life fantasy that I would die camping. It includes pills and whiskey, Jack Daniels to be specific on a cold rainy day .

    But enough of that.

    Three years ago I was on a call with friend I went to highschool with. They'd been having some health problems and I inquired as to how they were doing. They said fine and I said no really and they said really?
    I'm dying.
    I booked a flight and spent some time visiting

    They had been fighting dearly. An only child whose only family was their spouse.
    They were ready to give up, but their spouse was insistent they keep fighting.
    They're situation devolved over the next couple months to a point where they were living first in a hotel then their car. Totally estranged from their spouse.
    A horrible conflict at the end of their life
    They called. I brought them here and put them up in my parents home.

    My parent was at assisted living.
    My sibling and I with a lot of help from friends and a wonderful hospice care gave my friend their wish to die at home free of extraordinary medical intervention.
    It was a tough three weeks from the time they refused food.
    The day before they died they spoke for the first time in a week.
    Bye bye. They said it twice

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  4. In a way it's astonishing how current this article still is, but then, death is one of those things that just doesn't change. Thanks for posting Neil. This is an issue we in Illinois are finally going to have to deal with politically rather than just a personal level, looks like. I don't have specific links on hand right now but I'd encourage people to google how this is going in Canada--not so well. Not necessarily a sign that we shouldn't have this option, but definitely a sign that the policy details matter and if we do it, we should avoid their mistakes.

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  5. Replies
    1. Yes, along with good palliative care.

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  6. Ancestry shows a Don Shaw of the right age buried in the Enid Cemetery. Died in at age 81 in a nursing home in Evansville, IN. Death certificate says bronchitis.

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  7. Even in states that have laws to allow people to decide when they are terminal to stop extraordinary means, it can be a fight with medical personnel to actually stop treatment; this was the experience of a relative of mine. It took an additional 3 days of suffering for the medical staff to allow the person to be removed from equipment keeping the person alive. But if IL does past something it would be a positive move.

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  8. My aging parents moved to Oregon (where I live) in 2000, in part because “physician assisted suicide” was legal here, and my father’s greatest fear was an agonizing painful death. He did develop terminal cancer and as it progressed, and he was on hospice, he initiated the process, which takes a couple of weeks. He died, naturally, a few days after sending in the forms. But, we were all prepared for his choice to end his suffering at the time he chose.

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