My Terminally Ill Aunt Wanted To Die On Her Own Terms, But Couldn’t
When my tía Bebi was diagnosed with terminal cancer, she asked me to help her get to Switzerland, where assisted dying is legal — but we had no idea how many obstacles would stand in our way.
My tía Bebi was a dead ringer for Marlene Dietrich, or Uma Thurman circa Pulp Fiction. She was extremely thin, aided by dubious weight-loss supplements she purchased online, and she filled her closet with immaculate clothes. She hated getting up earlier than noon, and would always take her modest breakfast and coffee in bed, a habit I found irresistibly luxurious. She was the second of three sisters born in Capilla del Señor, a small town outside of Buenos Aires, in the early 1950s. She lived with my mother, my eldest aunt, their defeated mother, and their despotic father in a massive, decaying house that was once the pride of the town. Their surname once stood for a great deal of wealth and now came to represent financial ruin, courtesy of the patriarch’s crippling gambling addiction. Tía Bebi would never leave the house without wearing her patent-leather Salvatore Ferragamo stiletto boots or her nude Prada pumps. She had not one, but three fur coats (one mink, two fox). Her favorite perfume was Chanel No. 5. She had celebrated her 55th birthday each year for the past six years. She wore diamond studs and gold rings. She had a PhD in philosophy, and was an elegant writer. She smoked a pack of cigarettes a day (always Parliaments), and she was generous with her money and her time.
I was her sobrina predilecta, her favorite niece, as she’d often tell me whenever I did something that particularly delighted her. She was my second mother, and mothers are always complicated. Tía Bebi felt stifled and stilted in a relationship and a family that didn’t appreciate her talent or her complexity. “Never get married, Luisa. Stay independent. Make sure you have your own money,” she told me once after returning to live in her ex-husband’s house because she had burned through her finances. For a woman who felt like so much of her autonomy had been stripped from her, regaining control was paramount.
So, in April 2015, when the doctors confirmed that she had an aggressive pancreatic cancer that was eating into her liver and making its way through the rest of her body, she rejected the possibility of palliative care offered by her oncologist, and instead enlisted the help of those she trusted the most: my mother and me. We would go to Argentina, help her gather all the necessary paperwork, and carry out the contingency plan that she had been nurturing in the back of her mind for years, in case the unthinkable happened. We’d accompany her to Dignitas, a Swedish nonprofit organization that specializes in physician aid-in-dying for people with a terminal illness. Since its founding in 1998 by the Swiss human rights lawyer Ludwig Minelli, Dignitas has helped 2,328 terminally ill people die (as of 2016).
Physician-assisted suicide is still illegal in most countries, including Argentina, where my aunt and mother grew up. Most states in the US oppose the practice, but three states — Oregon in 1997, Washington in 2008, and Vermont in 2013 — have passed laws approving it. In March 2016, the state of California joined them, passing the End of Life Option Act, which came into effect on June 9. The law allows doctors to prescribe an aid-in-dying medication to terminally ill adult patients with the capacity to make personal medical decisions, but patients must be capable of administering the drug themselves. In June 2016, Canada passed legislation legalizing physician aid-in-dying procedures, which covers both voluntary euthanasia and assisted suicide. In Europe, which generally has the most lax policies of any continent, the Netherlands has had a similar law in effect since 2002. Dignitas, however, is still the only organization in the world that takes patients of any nationality.
For a woman who felt like so much of her autonomy had been stripped from her, regaining control was paramount.
Back in 2008, long before she was diagnosed with terminal cancer, my aunt decided that if she were ever cursed by a theoretically possible but at the time unfathomable terminal illness, she’d want to end her life with the help of Dignitas. It was in her will: “If faced with the inevitability of dying in a manner incompatible with my desired quality and dignity of life, I wish to go to Dignitas in Switzerland and die by my own hand, with my peace of mind intact.”
Tía Bebi wasn’t even particularly fond of Switzerland. But it was infinitely better than dying in a hospital bed, she reasoned, and dealing with everything in one place made the act of dying less of a hassle. She would travel to Zurich and then to the town of Pfäffikon, where Dignitas was located, stay for one or two days, call some friends to say the obligatory goodbyes, and then, when the time came, put on the Joaquín Sabina record she would bring with her and take the 10 grams of pentobarbital that would kill her. She requested that her ashes be strewn across Lake Zurich once it was over.
My mother, I would later learn, had made a pact with my aunt years ago. If either sister were diagnosed with a terminal illness, the other would employ every resource available to them to get them to Dignitas. If that weren’t possible, they would find another way to end it. No matter what, they weren’t going to let each other die slowly and decrepitly, with adult diapers and dribbling spittle marking their last days.
When I arrived to my aunt’s home in Buenos Aires, less than a month after her diagnosis, my mother warned me: "She looks bad. Don’t get scared. Act normal." Lying in one of the house’s guest bedrooms, Bebi looked skeletal and her skin was blotchy. “Hola, bebe,” she said when she saw me, and struggled to sit up. The high doses of morphine made it hard for her to form words, and she uttered them slowly, laboriously. If she could barely get out of bed already, how could she make the almost 24-hour-long journey to Pfäffikon?
But she wanted to go to Dignitas, and so I went to work gathering the documents required by the organization, only to be confronted with one bureaucratic nightmare after another. At first, a pleasant woman at Dignitas named Sabrina Krenger told me they would need my aunt’s PET scans, the biopsy report, and oncology reports. But they needed the originals, and they had to be sent via snail mail. We sent them through an express courier service, but it would still take a week for the documents to reach Switzerland. A week passed, then ten days. My aunt was getting restless. Every time I would walk into her room, her questions were the same:
“Have you heard from Switzerland? What’s missing?”
“We haven’t heard yet, but I’ll call them tomorrow. I’m sure everything’s fine.”
No matter what, they weren’t going to let each other die slowly and decrepitly, with adult diapers and dribbling spittle marking their last days.
Krenger finally got back to me two weeks later. But instead of giving me the confirmation from a Dignitas-affiliated physician asserting that my aunt was indeed dying, she needed a litany of additional paperwork: my aunt’s birth certificate, marriage license, and a copy of the divorce papers. When I told my mother, she panicked. My aunt’s health was visibly deteriorating every day. “Adriana destroyed her marriage license, and her birth certificate is lost,” my mother told me. “We’re going to have to search for it, but we can’t tell her. She’ll get too agitated.”
I would slink through my aunt’s room, opening boxes and shuffling through papers as noiselessly as possible while Tía Bebi slept fitfully, her sleep often interrupted by the painful tumor that was beginning to bulge obscenely out of her abdomen.
“¿Qué buscas?” she asked one afternoon after suddenly waking to find me going through her dresser.
“Nada, I just thought I misplaced something. Don’t worry about it. Please go back to sleep.”
“Have you heard back from Switzerland?”
“No, but I’m sure we’ll hear back soon. It’ll be fine.”
A couple of hours later, I heard a crash from my aunt’s bedroom. After rushing upstairs, we found her in her nightgown, shaky on her skinny legs, looking in confusion at the contents of a spilled box of papers she had tried to lift.
She stared at us, bewildered. “We need my passport for Switzerland, right? We need to find my passport.“ She tried to bend down to go through the papers, her protruding tumor forcing her into an awkward squat. “The passport,” she murmured again, as she struggled to reach the floor, her emaciated arms trembling from the effort.
If she could barely get out of bed already, how could she make the almost 24-hour-long journey to Pfäffikon?
After a number of those incidents, we had to be more careful in our search for the missing documents. Calls to the national registry had to be discreet, bribes offered to low-grade government clerks to speed the process along had to be even more discreet. I snuck my aunt’s laptop out of her room to go through her files and see if I could find any necessary copies she might have made before the morphine started eating away at her lucidity. I felt ashamed, going through my aunt’s personal computer. I felt even more ashamed that another ten days had passed before we were able to send everything off to Switzerland. At this point, it was early June, and my aunt was no longer able to stand, let alone walk, unassisted.
“Sabrina, it’s all there. It’s on the way. Can we make an appointment now? Can we please come?” I asked Krenger over the phone. She and I were on a first-name basis at this point.
“We’ll have to review the documents first. And then, if you get the green light, we first need to make an appointment for your aunt to see a Dignitas doctor here, as well as a psychologist. Only if we get their approval we can begin to discuss dates for your aunt’s assisted death.”
“How long will this take?” I asked. I mentally calculated the number of days it had been since my aunt had stopped being able to walk down the stairs.
“Probably another three to four weeks. We’re trying to speed it up because of your aunt’s advanced condition, but this is as fast as we can go.” She paused before continuing. “We have to make sure we’re completely covered, legally speaking. I hope you understand.”
Between preparing meals and counting out morphine pills, I continued obsessively researching assisted suicide laws, and what I read made me furious. What was so humane about watching my aunt cry in humiliation when it became clear she would need to switch to adult diapers? She was actively suffering; the prolonged, humiliating, dirty death she had always feared and tried to counteract manifested itself more clearly each day. And throughout the entire time, all she was holding on to was Switzerland. I was tortured by the idea that I was denying my aunt her desperate wish, an attempt to die with dignity in the face of a disease that was wholly undignified.
I was tortured by the idea that I was denying my aunt her desperate wish, an attempt to die with dignity in the face of a disease that was wholly undignified.
One vocal opponent of assisted dying I spoke to last year — J.J. Hanson, president of the advocacy group Patients Rights Action Fund and a brain cancer survivor himself — told me that a big problem with assisted dying legislation was the fact that palliative care services were often neglected as the best solution for terminal patients. Instead of offering patients death, he reasoned, hospitals should be offering better and more comprehensive palliative care. But my aunt, despite receiving generous amounts of morphine and attentive (and expensive) doctors who made home visits and were present around the clock, suffered enormously, both physically and mentally. The humiliation of losing control of her body was too much for a woman like her.
In early June, right around the same time I was tearfully calling Sabrina Krenger long-distance every morning to pester her about the status of my aunt’s “green light,” Tía Bebe had begun waking up every three hours at night and attempting to walk down the stairs. She wanted to see her garden again. My mother and I had essentially stopped sleeping, opting instead for restless one- to two-hour dozes, constantly alert to spring up at the slightest sound and keep my aunt from getting out of bed. She resented this.
“¡Déjame ir!” she’d snarl as I grabbed her arm, trying to calculate how much force to use to keep her in bed without hurting her. “I can do this by myself! I don’t need your help!”
It was worse when she needed to go to the bathroom. She’d only let my mother help her, while I’d unhelpfully linger by the door. One day I suddenly heard her cry in the bathroom as my mother was pulling up her underwear.
“Perdón, hermanita. I’m so sorry,” my aunt said. “I didn’t want it to be this way.”
It is precisely this sort of trauma that an effective end-of-life legislation should help avoid, Dr. Robert Brody, an internist at San Francisco General Hospital, explained to me in March 2016. Dr. Brody has been advocating for end-of-life options for terminal patients for 20 years now, and even sued the city of San Francisco in 2015, demanding the right of terminally ill patients to have access to end-of-life options.
“Physicians have been helping their patients in this way forever, but under the table, not talking about it,” he said. His interest in the topic began in the 1990s, when he was the medical director of a hospice program for AIDS patients in San Francisco. “It was during the worst part of the AIDS epidemic,” he said. “It became almost expected that if you were a dying AIDS patient, your physician would help you in this way.”
One of the most glaring issues for Dr. Brody was the phrase “assisted suicide,” which is often used when talking about assisted dying. “In our culture, the word ‘suicide’ is inextricably linked with mental illness,” he said “The people who want to take advantage of these laws in the various states in which it's legal are not mentally ill, and they really resent being thought of as mentally ill.”
“It's not a question of choosing life or death. It's a question of choosing how they're going to die, and when they’re going to die.”
This is precisely why Dignitas is so adamant in its role as a suicide prevention organization, and so exacting in their demands for medical and psychological diagnoses. “Dignitas is a life assistance and a suicide-prevention organization and a nonprofit association,” a Dignitas representative (she declined to give me her name) explained over email. “A large part of our activities are the practical and legal counselling of doctors, patients, healthy individuals, the relatives of patients, and so forth.”
Dr. Brody stressed that the people who choose to end their life in this manner are not suicidal at all. “The people who use this act don’t have life in front of them, so it's not a question of choosing life or death. It's a question of choosing how they're going to die, and when they’re going to die.”
I had to tell tía Bebi we weren’t going to be able to go to Switzerland. It was mid-June, and Krenger had finally given me the coveted “green light,“ and offered me an initial appointment date of July 8, but it was too late. I had discussed the possibility of travel with my aunt’s doctor, and he immediately dashed any lingering hope we may have had.
“Have you lost your mind? Have you seen your aunt? She’s attached to an oxygen tank the entire time. There’s no way she can travel, and no airline in the world will let her on a plane.” He shook his head disapprovingly, as if I had given my aunt false hope all along. “You have to tell her it’s not going to happen.”
I told her that same night. It was 2 or 3 in the morning, and my aunt was agitated and moving around as if searching for something. We had finally decided to enlist the services of a night nurse, whom my aunt periodically showered with abuse. On that particular night, I could hear her attempting to gently coax my aunt into lying back down, to no success. I got up.
“Don’t worry, Maria, I’ll sit with her for a while.”
I walked my aunt to the hallway as she gripped my arm tightly, and sat her on a soft armchair. She shifted around nervously, trying to find a position that would accommodate the bulging tumor protruding from her abdomen.
“Tía Bebi, ¿que quierés?”
I pulled one out of a pack of Parliaments, put it between my lips, lit it, inhaled once, and offered it to her, holding the cigarette steady between my fingers. She was too weak to hold it herself.
“Should she really be smoking?” the night nurse asked, standing awkwardly by the door of the bedroom.
My aunt and I both stared at her. “It doesn’t really matter much anymore, does it?” I asked. The nurse retired promptly, leaving us alone.
After a while, the inevitable came up. “¿Y Suiza?”
I hesitated. “Tía Bebi. Do you think you’re able to travel anymore?” She sat for a while, staring off into space, her body shaking, her breathing laborious and loud. I offered her another drag from the cigarette, and she took it. Finally, she shook her head. No, she was not well enough, and she knew it.
“Perdón, tía Bebi. Forgive me. I tried, I really did.”
She nodded her head ever so slightly, taking ragged, broken breaths.
Three days later, she was on a morphine drip. Three days after that, on June 25, she was dead. We were relieved.
I called my mother some months after my aunt’s death. I had just talked to Hanson about his fight to beat his brain cancer, and I was overwhelmed with doubts about whether my aunt should have undergone chemotherapy after all. My mother listened quietly before saying: “It makes you wonder. Perhaps Adri could have made it, too. I sometimes think about that.”
There was a silence on the phone as I waited for her to continue, my heart sinking. Should we have pushed chemo? Should we have somehow forced her to fight? My mother sighed, then continued: “But in the end, I know she didn’t want to fight. She wanted to go to Dignitas. She wanted to die on her terms. She wanted it to be her choice. She spent a lifetime feeling like she had no choice, and this was finally going to be hers.”
I hung up, conflicted. In the end, my aunt didn’t get to choose. She died in a way she explicitly wanted to avoid — broken, in pain, humiliation, and anger. My aunt didn’t have a death wish; she was not suicidal. She had plans, hopes, and ambitions. She was terrified of dying. I saw that fear every day I was with her. That’s precisely why I still wish she had had the choice to end things on her terms: to confront that mortal fear head-on, to take charge of it, and to own it. To make it hers. ●
Luisa Rollenhagen is a Argentine-German journalist. She works at GQ, and is currently based in New York.