April 2009

Essays

Gail Bell

Endnotes

Alberto Giacometti's studio, Paris, 1960. © Rene Burris - Magnum Photos.

I went to a funeral in early December. In the tropical heat, mourners stood waiting in the shade of the portico, some staring down at the photograph on the single sheet of paper that carried the bare facts of Eddie's life and death, others fanning themselves or twitching their shoulders inside new shirts. Eddie - the teacher, the coach, the deceased - had been well loved. That he was only 60 cut deep with the mainly middle-aged congregation.

Inside, the chapel seats filled quickly. The women tended towards the front; the more senior men, reluctant to push forward, stared down at their shoes or rolled their order-of-service programs into hollow tubes. The late arrivals, most of them young men, all curiously alike with sun-bleached hair and dark glasses, formed a cordon around the back wall. As we waited in the low yellow light, I watched this pageant of youth, three deep in places, quickly assume the appearance of children who have stumbled on a tragedy while playing near the water's edge. I recognised their surprised horror. It was the sight of the pine box on the stage. The same emotion had taken possession of me.

I came to know Eddie at second hand, through my husband. There was much to love about Eddie, and much to wonder about. I knew he had a liver disease aggravated by decades of drinking and yet persisted with his haphazard lifestyle. He still smoked tobacco, still liked a joint in the mellow afternoon hours and, despite a lifetime of bringing out the best in young soccer players and aspiring professional surfers, waited too long to give up the grog. My husband, who loved him like a brother, accepted Eddie's eccentricities but still wondered aloud, as Eddie's illness began to define him, "Why didn't he try harder to live?"

I, too, wondered. Catching sight of him one spring evening on the beach promenade, I felt heartsick at the change in his physique: stick-thin limbs, a shrunken head and the round belly that signals an unnatural accumulation of fluid. He was walking with a friend, and we hailed them as they drew closer. The friend had invited him to join a tour group of art teachers. "I'm going to Paris," Eddie said, beaming. "The Louvre and all that."

I tried not to look surprised. Eddie in Paris? He seemed to be struggling to make it as far as the corner - what made either of them think he could survive 20 hours in a plane, let alone the bustle of the First Arrondissement?

Later, by phone, Eddie asked me to put together a medical kit for him. The usual stuff, he said. To my husband, after they'd finished their wisecracking routines and surfing reports, he said soberly, "Does Gail think I look all right?"

"Why would he ask that?" I moaned. "He's got experts, specialists, the transplant doctor."

"He said you could read him. He believes he'll be all right if you say he's all right."

The unfairness of this assumption struck me hard. Of course he wasn't all right. I doubted he would see Christmas.

"You look better, Eddie," I lied on the eve of his departure. He countered, "Oh well, see Paris and die, they say," playing up his role in our flat-footed vaudeville routine.

Eddie's path to dying followed a crazy kind of logic. He chose, many years ago in art school, to fool around with things that introduced a virus into his liver. When the virus finally declared itself, after decades in hiding, he chose to give up drinking but not to undergo a treatment that, though harsh and sick-making, may have given him a chance to lumber on at quarter-strength - enough time to finish his canvases within sight of the surf.

The dying time, after Paris, was awful. And yet, in his lucid moments, Eddie never spoke of or made any requests for assistance. I used to wonder how he stood it, why he stood it, when he could have asked for the bare bodkin that can be proferred if a dying person wants it badly enough.

If Eddie's experience is as close as I come to pondering ‘end of life' choices, what is there to learn? Would I choose Paris? Would I wring every last minute out of my time in the world, then entrust my dying to morphine and the moral compass of an unknown doctor? Or would I have laid up a stash of barbiturates, nominated my accomplice, chosen the day, the hour, and asserted my control right to the end?


We each have an entry point into the vast euthanasia emporium. For years I've deflected all attempts by others to draw me inside the building, preferring my own private Neverland illusions - but the pressure to step off the footpath and move through the big revolving door has been mounting. I find my friends wanting to talk about dying. And not just the normal ‘everyone dies' line that is supposed to demonstrate a grip on philosophical or religious tenets; they want to talk about ‘good dying', ‘dying with dignity', and choices. I feel as if I'm eavesdropping on the bed-talk of Jack and Iris, the couple who can't get back to sleep after the phone rings at 3 am in Raymond Carver's short story ‘Whoever Was Using This Bed'. Their conversation, at first desultory, takes on a hysterical tone after Iris relates a dream in which her ex-husband appears and Jack doesn't. They light cigarettes and Jack tries to settle, but can't. Iris is in the mood to talk. She tells him she has a throbbing vein in her forehead that might be an early sign of stroke. Jack mentions palpitations.

"Who knows what we'll die of?" Iris asks. "It could be anything." She warms to her theme: "Did you see in the paper where that guy took a shotgun into an intensive-care unit and made the nurses take his father off the life-support machine? Did you read about that?"

Jack counters with the story of a nurse who unplugged six or eight patients, beginning with her mother. "It was like a spree, I guess."

Iris recalls her grandfather becoming a vegetable in a nursing home. "I want you to promise me something," she says. "I want you to promise me you'll pull the plug on me, if and when it's ever necessary. If it ever comes to that, I mean. Do you hear what I'm saying? I'm serious about this, Jack. I want you to pull the plug on me if you ever have to. Will you promise?"

In the conversations I've been drawn into, I'm not asked to pull the plug. The challenge is presented as an extension of my regular line of work, pharmacy. We'll look to you for a dose of the right stuff when the time comes.

 When there is nothing at stake, no parent lost to dementia, no brother writhing in pain, talk of helping someone to die is safely hypothetical, and quite possibly more common than I know. Certainly, among my own generation, there is less of the hypothetical and more of the getting-down-to-business. Baby boomers who have been able to control large stretches of their lives and are used to choice are repositioning themselves for the next big thing. Like Iris and Jack they are beginning to think aloud, to rehearse their death scenes in the shadow of today's milestones: the empty nest, the loss of parents, retirement. They put out feeler questions, venture small taps on the membrane separating us from the great unknown of not-being. Except for Eddie, none of my group has yet reached their own end-of-life nexus. Their questions, so far, are generic. Would you help me, if and when it's ever necessary?


The Swiss-born psychiatrist Dr Elisabeth Kübler-Ross - an opponent of euthanasia "because it prevented people from completing their unfinished business" - spent much of the '60s and '70s asking and answering the question Why is it so hard to die? She observed that while it happens "all the time, we never see it": death, in the developed world, had become unfamiliar. The dominant rituals that once taught an individual how to die well, the ars moriendi (art of dying) that demanded prayer and pilgrimage, offerings and sacrifice in order to depart in a state of grace, had been largely superseded. The sick died in hospitals, institutions designated for healing - thereby equating death with failure - and they died under the gaze of doctors who were constrained by their professional roles. What was missing, Kübler-Ross argued, was ordinary humanity. What was needed was a new, secular manifesto for the art of dying, the endpoint of which she summarised as "acceptance", a word that can co-exist with faith and belief but firmly places the navigation in the hands of the dying: "Reject those outer definitions of yourself and choose, instead, your own."

Her ideas gradually brought about a change in the medical orientation to the dying patient, but not before a good many very ill people died ‘bad' deaths.

In 1963, in Paris, the 77-year-old Françoise de Beauvoir, mother of the French writer Simone de Beauvoir, fell and broke her femur. While in the clinic, other symptoms that had previously been downplayed or dismissed came to the fore. When X-rays confirmed stomach cancer, Simone and her sister took turns to sleep by their mother's bed, until, 30 days later, Françoise died what could be described as a bad death, a journey her daughter recorded and reflected upon in a book ironically titled Une mort très douce (A Very Easy Death).

Françoise de Beauvoir (Maman) suffered terribly. In agony, she begged for more morphine and was met with banter about becoming a drug addict, followed by a cold refusal: "There are two points upon which a self-respecting doctor does not compromise - drugs and abortion."

A further burden on the anguished Maman was her "animal dread" of death. "Don't let me die while I'm sleeping!" she railed after being given a tranquiliser for anxiety. "We must keep back death," she called out. "I don't want to die." "I am losing days," she reproached her daughter. At no point was Maman told of her cancer. Even when she had the "sadness of a defenceless animal" in her eyes, her daughters upheld the lie that she was going to live. "We had no choice," Simone de Beauvoir wrote. "Hope was her most urgent need."


A good death ought to be - as Dr Rodney Syme, the vice-president of the pro-euthanasia association Dying with Dignity (Victoria), argues - "the antithesis of a bad death". Madame de Beauvoir's "rage against the dying of the light" (the epigraph, from Dylan Thomas, to A Very Easy Death) fails all but one - that of not dying alone - of Syme's criteria for dignity at the end of life. The other criteria - freedom from anxiety, preparedness, clear communication with family and friends, a degree of control, a minimum of suffering - were forfeited by the patient's own inner turmoil and her doctor's unenlightened attitude.

Syme's compassion and erudition are valuable strengtheners for anyone puzzled by the contemporary medical approach to death and dying. The majority of today's doctors do, or would, compromise. But it is not a comfortable compromise. Their oaths demand that they save lives and simultaneously relieve suffering, in the full knowledge that some suffering can only be relieved by dying. The choices before them are to deny the patient a say in the final struggle (a choice that euthanasia advocates call "morally reprehensible"), to fudge the issue with doubletalk, to pass the buck to palliative care, or to engage in the practice known as terminal sedation. To move beyond this limited menu and assist a suicide is illegal in this country, and risks ending a career. But Syme argues that doctors who participate in assisted suicide are not punished, that there is a "benign conspiracy" afoot to prevent doctors being prosecuted, and that this cosy arrangement operates like a members-only club. "To my knowledge," he has said, "only two doctors in Australia have been charged with either murder or manslaughter, or aiding and abetting suicide, in the last 45 years. Both were acquitted." Yet when lay people provide the same assistance, they are roundly attacked and publicly prosecuted.

She who experiences a good death, in Syme's model, takes advantage of the expertise, drugs and equipment a doctor brings to the bedside. And the comfort, I imagine, of an archetypal presence: the healer, attending to the pain that can only be cured by death.

A good death is also quick, once the psychological and existential dimensions have been addressed. But how might the dying of Madame de Beauvoir have been better managed, given her "vain tenaciousness" for life? How to have a frank discussion with a woman who, at almost 80 and riddled (albeit unwittingly) with cancer, exclaims over the fresh smell of talcum powder and little red roses by her bed "as though ... she were waking afresh to the miracle of living"? The instincts of her daughter - to freely supply morphine and any other palliative to hand, and not to operate, intubate, or resuscitate - accord with the model of deep continuous sedation with a view to hastening death. Yet it seems unlikely that Maman would have been amenable to Elisabeth Kübler-Ross's view that death does not have to be catastrophic, that it is possible to "successfully integrate the expectation of death into the understanding of life". Her daughter, the great existentialist, wrote, "You die from something. The knowledge that because of her age my mother's life must soon come to an end did not lessen the horrible surprise: she had sarcoma."

The most controversial option laid out by Rodney Syme, and deemed unethical by the Australian Medical Association, is to give in to the patient's request and provide a physician-assisted death. This may be done by writing a prescription for a lethal cocktail of drugs which the patient can then take at a time of her choosing - an act that restores autonomy (and assumes the patient's competency to make such a decision) at a time of extreme helplessness.

In Jean's Way (1978), Derek Humphry gives one of the first insider accounts of suicide enabled by such a prescription. In the terminal stages of cancer, Derek's wife, Jean, chose to die at home with medical help. Jean's doctor sought advice on the best combination of prescription drugs, supplied the drugs, then left the rest to the couple. After reaffirming their decision to make her death a mutual act, Derek and Jean carried out their parts to the best of their knowledge and ability.

The drugs, a large quantity of the barbiturate Seconal (a first cousin of Nembutal, currently the most popular kill-pill) and codeine, were meant to put Jean to sleep quickly, then slow her breathing until it stopped. But Derek, naive in matters of chemistry, made some basic mistakes. Well in advance of the day, he emptied the powder out of the capsules, mixed it into water, and stored it in a screw-top jar. When Jean decided the day had arrived, Derek emptied the contents of the jar into a hot cup of coffee ten minutes before giving it to Jean. The earlier dilution and the heat caused the drugs to degrade; but fortunately, from Derek's point of view, the large initial amount of Seconal and Jean's poor physical condition combined to bring about her death.

Mistakes, or at least omissions, were also made on the medical side. Jean was not told to take an anti-nausea drug (she vomited some time after drinking the coffee), nor was she told that sedative drugs work more quickly when taken with alcohol. Jean died 50 minutes after swallowing her lethal dose, breathing "heavily and noisily" while her husband waited in a state of anxiety.

Thirty years on, this method has changed little in substance but significantly for the better in detail. The refinements of what was, three decades ago, an educated guess on the best way to manage a medically sanctioned overdose are minor. The patient takes anti-nausea medication for some days prior, eats a light meal on the day, and augments the sedative drugs' potential with port or whisky or sherry. The striking difference between today and 1978 is that the drugs themselves, the barbiturates, are almost entirely restricted from human use.


Choosing to die on your own terms, without an attending doctor, requires a guidebook.

Lena, a slim, active woman in her late seventies, bought Dr Philip Nitschke and Dr Fiona Stewart's The Peaceful Pill Handbook online - the book is banned in Australia - in anticipation of ending her life on her own terms. As cold-bloodedly as that? I asked. Certainly. And she'd attended an adult-education seminar, whose course booklet she showed me. Listed along with topics as diverse as "The Life and Music of Cole Porter" and "Herodotus, the First Historian" was the "one-day special": "How to Prepare Your Advance Care Directive (ACD) / Living Will". Lena is not ill, but she's recently recovered from a broken femur and in the past decade has had two hip replacements. Her older sister died from cancer and she wants to be ready, in case: the Advance Care Directive allows her to specify her wishes about palliative medication, intubation and resuscitation.

At what point, I wondered, would she want to end her life? She stared into the middle distance, took a deep breath, and answered: "Being confined to a wheelchair; becoming incontinent." I waited, then felt the need to say that my mother is both wheelchair-bound and incontinent, yet has a much younger woman's zest for life. (In some ways, I thought - but didn't say - my mother reminds me of Françoise de Beauvoir, a woman in love with the miracle of living.) I hadn't meant to introduce comparisons - in fact, I regretted speaking - but my interjection seemed to encourage Lena to recast her vote. Intractable pain or dementia, she thought, might trump loss of mobility. Becoming a burden on her family; losing her dignity. Frankly, it was all too complex and ever shifting. Who could predict the exact trigger?

Lena showed me her workshop notes. One sheet, "Preparations for Life's Final Journey", asked for ten or so lines on the theme If I had six months to live, I would ... Followed by: If I had my life over, I would ... To me, these are unbearably sad subjects. I couldn't write a word if the exercises were given to me. I am not ready. For Lena, they are projects, goals, steps on the path.

The Peaceful Pill Handbook has helped Lena reduce the vastness of preparing for death into smaller, manageable tasks. She knows that she is not tired of life. Nor is she depressed. If anything, she's a pragmatist who has lived long enough to know that all good things must come to an end.

In the event, she thinks she will contact the local chapter of the euthanasia group, although her preference is to manage the thing in-house, with help. An obliging pharmacist or vet to supply the drugs would be ideal (she knows I am a pharmacist), but she shrinks from involving anyone in an illegal and harrowing activity. Harrowing? "For the other person it would be like handing over a loaded gun and saying, ‘Here, top yourself with that.' There's a shared responsibility, a shared need to get it right."


The remarkable difference between the Derek Humphry book (along with its 1981 successor, Let Me Die Before I Wake) and the 2006 Nitschke-Stewart handbook is that, though both recommend barbiturates over most other drugs, in Humphry's day obtaining 50 or 60 Nembutals or Seconals was simply a matter of visiting the nearest dispensary.

There has been a curious reversal in the status of the two favourite drugs for ending life, morphine and Nembutal. In the '60s, when de Beauvoir's mother was crying out for pain relief, medical morphine was rationed, while sedatives and hypnotics were available in cornucopian quantities. Rationing morphine continued through most of my early career in hospitals, in the '70s and '80s, where apart from counting out ampoules I made gallons of Brompton's Cocktail - morphine, cocaine, gin or 90% alcohol, in a sweet base - only to see it cautiously drip-fed to those in the terminal-cancer ward who could still drink. Only the advent of the palliative-care movement relaxed this misplaced miserliness and restored sensible dosage guidelines.

Conversely, barbiturates were the most readily available, most loved downers of the postwar generations. As a young graduate I was regularly up to my elbows in Nembutal (pentobarbital), a sedative so ubiquitous that it came in tins of 1000. The egg-yellow capsules were counted out into lots of 25 and labelled, "Take 1-2 at night when required for sleep." These were the yellow dolls, the yellow submarines, the Nembies of Valley fame.

The reprinting of Jacqueline Susann's 1966 cult novel, Valley of the Dolls, is a timely reminder of the shifts in medico-legal boundaries; for students of drug history, it is also a window on a vanished world. Julie Burchill writes, in the introduction to the new edition, that Susann managed to achieve "a strange sort of accidental integrity" in her depiction of the first generation of pill-poppers.

To the contemporary eye, the drugs and behaviours (and hairstyles) are quaint and even embarrassing. We are reminded of the near past, a time before the information explosion, when not knowing everything was the norm and discoveries came upon us slowly, like stories told by candlelight. I thought I remembered the storyline - three wannabes trying to make it in Hollywood, in a continuous haze of booze and pills - but rereading it I discovered that the first doll doesn't appear until page 200. Jennifer North (she of the big boobs) begins to take Seconal. "Oh, God! It was glorious! Her whole body felt weightless. Her head was heavy, yet light as air. She was going to sleep ... sleep ... oh, the beautiful little red doll!" Forty pages later she is taking three a night and singing Seconal's praises to her young friend Neely, a drug fiend in the making. Neely soon discovers there are yellow ones as well. "I take one of each - a red and a yellow - wow! The red one puts you to sleep fast, but it wears off in six hours. The yellow works slower, but lasts longer." Pretty soon Neely is taking five red and two yellow, and by page 368 she's on 30 a day plus three shots of pethidine.

During the 60 or so years that barbiturates were freely available on prescription in the US (they became a controlled substance in 1970), the number of deaths from poisoning, both accidental and intentional, steadily grew. Abuse and addiction - always a feature of barbiturate use but hidden from the non-medical population until Susann's "accidental integrity" alerted some 20 million readers - prompted studies that showed the drugs produce a greater mental, emotional and neurological impairment than opiates. Through their actions on a neurotransmitter, GABA, that slows brain activity, barbiturates can at sufficient dosage ‘open the tap', allowing GABA to flood in and push the patient beyond sleep, into death. Alcohol has a hand on the same tap, making the combination particularly lethal.

According to the Nitschke handbook, "The most commonly expressed wish by seriously ill and elderly people is that they be able to die in their sleep." Nembutal plus alcohol reliably induces sleep before death. Morphine, on the other hand, is known to have an unpredictable effect, sedating some people thoroughly, making others nauseous or anxious, and slowing respiration in the still-conscious sufferer.

These days, Australians are going to extraordinary lengths to obtain Nembutal: flights to Mexico; covert deals with vets; the black market; dubious website transactions; home cooking. Reading, in the Nitschke book, the history of the Peanut Project (an offshoot of Nitschke's euthanasia-advocacy group, Exit International), reminds me of the civil-disobedience movements of the '60s - with one notable difference. Instead of earnest young protestors taking on the establishment, elderly men and women are setting up labs to synthesise barbiturates from first principles. "What government," the authors ask, "would want to be seen taking legal action against a group of 80-year-olds for simply setting out to establish their own end-of-life choices?"

When I asked a contact in the New South Wales Police Force's Chemical Operations Unit about the illegal manufacture of Nembutal in espresso machines (a strange echo of clandestine methamphetamine labs), he replied candidly, "It's one of those drugs that everybody seems to run from whenever it's mentioned. In the past four years we've investigated suspected local manufacture, but only in a minor way. There's never been anywhere near enough evidence to justify prosecution."


I am not ready to compose directives about my death. Until a few years ago I couldn't even tick the organ-donor box on my driver's-licence renewal, not because I oppose the practice or fail to understand the need but because I am still afraid of attracting the notice of the Grim Reaper. I think of those young men at Eddie's funeral and know that their dumb fear is my dumb fear. Perhaps some of us have to be nearer the end of the journey to face up to decisions about our death. Perhaps, in the absence of terminal illness, an aggregation of years on Earth is the decider. If I was Lena's age and in poor health, I might conceivably be able to utter the words I am tired of life. I can't take any more. If, when older, I reach a mental Neverland where fear is exiled - what I perceive to be neuroscience's promise - then my priorities might change; I might allow myself to let go of the negative and, when my time comes, be happy to wave goodbye.

I haven't a pat answer to the half-serious requests for a dose of the right stuff, either. I've always worked within arm's reach of the great pharmacopeia of kill-pills, but that won't help me pull a bottle of Nembutal out from my sleeve. Eddie only ever asked me for a first-aid kit for his trip to Paris, and I now recognise in our dealings an echo of the convenient lie that reconfigured stomach cancer as peritonitis in the dialogue between Simone de Beauvoir and her mother. For Eddie to ask me for something lethal would have forced both of us, the existential-angst types, into the same room as Addie Bundren in As I Lay Dying, into the scene where Addie meets the arrival of Dr Peabody with eyes "like lamps blaring up" and the doctor, in turn, recognises her last, angry effusion of pride, "that furious desire to hide that abject nakedness which we bring here with us, carry with us into operating rooms, carry stubbornly and furiously with us into the earth again".


Raymond Carver's story ends with Jack taking a stand. "No. Don't unplug me. I don't want to be unplugged. Leave me hooked up just as long as possible ... Let me keep going, OK? Right to the bitter end. Invite my friends in to say goodbye. Don't do anything rash."

"Be serious," Iris says. "This is a serious matter we're discussing."

"I am serious. Don't unplug me. It's as simple as that."

They rush off to work, where Jack, wretched from lack of sleep, begins to think "gruesome" thoughts about hospital beds, monitors, an oxygen tent. When he gets home, he wants to clear the air: "If it will make you happy, here and now, to hear me say so, I'll say it. I'll do it for you. I'll pull the plug, or have it pulled, if I ever think it's necessary. But what I said about my plug still stands." Iris agrees and promises never to bring up the subject again.

Then the phone rings. It's the woman again, the one who's been ringing their number, the wrong number. Jack is fed up. He tells this woman off; he tells her if she rings back he'll wring her neck; and while he's saying his piece, having his moment, Iris disconnects him.

We cannot know with certainty, any of us, what will happen when we slip into the sleep that precedes somatic death. If, during life, we raised a fist and declared, This is how I want it to be, we can only hope that someone was listening and is able to hold their nerve. Derek Humphry tells us that Jean asked him to go into the garden and wait for an hour after she swallowed her lethal dose. "I don't want you to actually see me die." Derek ignored this request. He worried that the drug cocktail might fail, and Jean would wake up and find herself alone and still alive. He told himself that if that were the case he would smother Jean, and so he sat monitoring her breathing for the 50 minutes it took her to die.

As for Eddie, he died slowly over weeks, in hospital, the place he said he never wanted to be. Heroic measures were out of the question. He lay in a room with only a bed and a table: no special equipment, only more and more morphine until he finally died. Who knows if that was his wish? How would any of us ever know? He was dead. End of story.

But, as it turns out, Eddie had managed to send out a small, ambiguous, softly spoken message to an old art-school friend, a person in no position to act on the news, or even share it until after the funeral. The message, left on the voicemail of a woman who was out of town, said, "I want to lie down on a mountain and go to sleep, that's all."

Gail Bell
Gail Bell has worked as a pharmacist, educator and writer. Her books include The Poison Principle and Shot: A Personal Response to Guns and Trauma.

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