My Terminally Ill Aunt Wanted To Die On Her Own Terms, But Couldn’t


When my tia 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.

Posted on August 29, 2017, 17:18 GMT

Rebekka Dunlap for BuzzFeed News

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.

Courtesy of Luisa Rollenhagen

Tía Bebi in Buenos Aires in 1998.

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.

Courtesy of Luisa Rollenhagen

Tía Bebi and the author’s mother in Bangkok in 2014.

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.

“¿Qué pasó?

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.”

Courtesy of Luisa Rollenhagen

Tía Bebi in Malta in 2014.

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?”

“A cigarette.”

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.



Source link