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Authors: Cory Taylor

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Surely there couldn't be a more futile exercise, for if cancer teaches you one thing,
it is that we are dying in our droves, all the time. Just go into the oncology department
of any major hospital and sit in the packed waiting room.
All around you are people
dying. See most of them on the street, and you'd never know it, but here they are
lined up, waiting for the latest results of their scans, to discover if they've beaten
the odds this month. It's a shocking sight if you're unused to it. I was as under-prepared
as anyone could be. It was as if I had stumbled out of a land of make-believe into
the realm of the real.

That is why I started writing this book. Things are not as they should be. For so
many of us, death has become the unmentionable thing, a monstrous silence. But this
is no help to the dying, who are probably lonelier now than they've ever been. At
least that is how it feels to me.

I had never seen anybody die. Until my mother became demented I had never even seen
anyone gravely ill. My mother's decline was slow at first, and then very fast. Towards
the end she was barely recognisable as the mother I had so loved and admired. I was
out of the country when she finally died, but I was there in the months preceding
her death and I saw the ravages she suffered, the pain and humiliation, the loss
of independence and reason.

She was in a nursing home when she died, a place of such unremitting despair it was
a test of my willpower just to walk through the front door. The last time I saw her,
I
stood helplessly by while she had her arse wiped clean by a young Japanese nurse.
My mother was clinging onto a bathroom basin with all of her meagre strength, while
the nurse applied a fresh nappy to her withered behind. The look in my mother's eyes
as she turned and saw me watching reminded me of an animal in unspeakable torment.
At that moment I wished for death to take her quickly, to stop the torture that had
become her daily life. But still it went on, for a dozen more months, her body persisting
while her mind had long since vacated the premises. I could not think of anything
more cruel and unnecessary. I knew I had cancer by then, and a part of me was grateful.
At least I would be spared a death like my mother's, I reasoned. That was something
to celebrate.

It was my mother who introduced me to the debate around assisted dying. She first
came across the voluntary euthanasia movement, as it was then known, some time in
her sixties, and I knew it was a cause she continued to support, because she made
a point of telling me. Back then I took far less notice than I should have. My mother
was asking me for help, but it wasn't clear what kind of help she wanted. Perhaps
just a bit of encouragement to look into the problem more closely, to obtain the
necessary means if it came to that. I wasn't very receptive. In those days there
was nothing wrong with my mother, or with me, so her arguments in support of the
concept of assisted
dying were purely academic. Of course, by the time they were
real and urgent, my mother had left it too late to put theory into practice, and
her mind had lost its edge, so that even the most well-meaning doctor in the world
could not have helped her, despite her years of devotion to the cause.

I wasn't there when my father died either, also in a nursing home, and also from
complications arising from dementia. My parents had divorced some thirty-five years
previously and I had subsequently become estranged from my father. But one of my
abiding memories of him is his fantasy solution to the indignities of old age. He
told us—me, my mother, and my older siblings—that he planned to sail out into the
Pacific Ocean and drown himself. He repeatedly baulked at the first hurdle, however,
by never obtaining a boat. He would read boat magazines and circle the For Sale ads
in them. He would drive long distances to look over boats he liked the sound of,
but he would always find a reason not to buy. Money was short, or he didn't want
to sail alone. At one point, he even asked my mother to buy a half share and to crew
for him, an offer she declined. Maybe she should have taken him up on it. Maybe they
should have sailed off into the sunset never to return; instead they lived on and
died badly.

No doubt my horror at how my parents ended their days influenced me to look into
ways I might improve things when it came to my turn. With this in mind, soon
after
I was diagnosed with cancer, I followed my mother's lead and joined Exit International,
wanting to get up to speed on the latest developments in the assisted dying field.
I also joined Dignitas in Switzerland, where it is legal for foreigners to obtain
assistance to die, provided they are suffering from a terminal illness. This was
an information-gathering exercise to explore the choices available to me, other than
those offered by my doctors. I don't wish to disparage the doctors who have cared
for me over time. Individually they've been extraordinary, and of course I owe them
a debt of gratitude. Apart from the palliative care specialists I've spoken to, however,
none of my doctors ever raised the subject of death with me, a fact I still find
mystifying.

So another motive for joining Exit was to find a forum for simply broaching the topic,
challenging the taboo that I felt was preventing my doctors from speaking openly
to me about something so pertinent. Despite the ubiquity of death, it seems strange
that there are so few opportunities to publicly discuss dying. Exit meetings are
the only occasions when I've found it is possible for people to speak about death
as a fact of life. The mood of the meetings is upbeat. My local chapter meetings
are usually attended by about forty members, many of them elderly, but with a sprinkling
of younger people eager, for whatever reason, to exchange information about ways
and
means to die. There is an inevitable cloak-and-dagger element to these gatherings,
given that mere advice regarding suicide has the potential to be construed as a criminal
offence. But this only adds to the atmosphere of bravado and high spirits. And of
course there is humour. Did we all hear about Tom, nudging ninety, who decided to
take his helium bottle up to his local cemetery and gas himself there? Apparently
he figured the dead are unshockable. And, by the way, anyone who is interested in
a refresher course on helium, please sign on for the upcoming workshop as soon as
possible as numbers are limited. It might be any meeting of any common interest group,
a bowls club, or a bird-watching fraternity, except that, after the tea-break, it's
back to rating cyanide and nitrogen gas according to ease of use, and speed.

The chief benefit of these meetings to me is their spirit of camaraderie. It takes
courage to contemplate one's own death, and, as I said before, it is inexpressibly
lonely. To find companions who share your desire to know more, to take the initiative,
and to laugh in the face of our shared mortality, is a gift. How different from the
experience of the hospital waiting room, where you sit in a glum herd with the overhead
televisions blaring, guarding your dirty little secret until such time as your name
is called. Whether it's good news or bad, the message is the same. In hospitals we
don't talk about death, we talk about treatment. I
would come out of consultations
feeling as if my humanity had been diminished by the encounter, as if I'd been reduced
to my disease alone, as if everything else that defines me had fallen away. By contrast,
I came home from my Exit meetings emboldened, convinced that Camus was right: suicide
is
the only serious philosophical question.

Exit encourages its members to keep the conversation going by forming smaller coffee-and-chat
groups with friends. Ours is chaired by Jean, a sprightly widow in her early eighties,
who lives not far from me, in Kangaroo Point. There's a cafe near her flat where
we can sit outside at a secluded corner table. We like to avoid being overheard.
Counting myself, we are six regulars. I get a lift to meetings with Andrew, who has
kidney cancer, and Colin, who has early stage Alzheimer's disease. Tony arrives on
the bike he manages to ride despite his Parkinson's shakes. And Carol drives an hour
and a half from the suburbs of the Sunshine Coast. There is nothing physically the
matter with Carol, but after years of abuse, both emotional and physical, from her
husband, she survives on a cocktail of anti-depressants and anti-anxiety medications.
Her mental suffering makes her question the value of going on. The talk is remarkably
intimate. Everyone knows why we're there. It's to comfort one another, to offer companionship.
We're like the last survivors on a sinking ship, huddled together for warmth.

I don't mean to give the impression that my companions are all hell-bent on doing
themselves in at the first opportunity. In my experience, our meeting to discuss
suicide does not imply that we're all firmly committed to ending our own lives. It
is more that we wish to contemplate what it would be like if that option was available
to us within the same type of regulatory framework that exists in countries where
assisted dying is legal. But this is not to say that anyone I've talked to about
choosing to end one's own life takes the matter lightly. We talk about this in the
car driving home from our coffee-and-chat meeting. Even if they had the means, Andrew
and Colin doubt they could ever go through with it.

‘It's too selfish,' says Andrew, and I agree, thinking of the lonely hotel room and
the traumatised housemaid. ‘It's like you're just saying “fuck you” to all your family
and friends.'

Which is why my drug remains unused, because of some moral qualm I share with Andrew
about the harm one can inadvertently do to others, by going rogue and acting alone.

It surprises me that I have any qualms at all, since I have never thought of myself
as a person of particularly high
moral standards, and I have no formal religious
background on which to hang a moral framework. And yet one cannot face death without
reflecting on questions of religious faith, or the lack of it, and on matters of
morality, or its absence. For instance, I wonder whether doctors here are discouraged
from talking about death with their patients by the strictly scientific and secular
nature of the way our medicine is taught and practised. It could be that other, older
medical traditions might understand and embrace grief and loss better than we do.
And I wonder about the morality of the government subsidising expensive experimental
cancer drugs, when other worthy areas of research go begging. As an example, the
last melanoma drug I took, between 2014 and 2015, was priced at $8500 a dose, to
be administered every three weeks, for an indefinite period. I was the beneficiary
of a free compassionate release of the drug, but it was very soon listed on the Pharmaceutical
Benefits Scheme and attracted government subsidy, despite its limited efficacy.
Lastly, I question the religious motive driving opposition to assisted dying for
terminally ill patients such as myself. Could it be that we, whether or not we have
religious beliefs, are being obstructed in our desire to die well by people who believe
that God frowns on individual choice in the manner of dying? Or worse still, that
God intends us to suffer? I don't know the answers to any of these questions, but
I think they're worth debating.

So many people ask about your religious beliefs when you're dying. I remember my
general practitioner asking if I was religious, after I told him I was running out
of treatment options. He had just written me a referral to a palliative care unit,
which happened to be based at a Catholic hospital.

‘Are you a church-goer?' he said.

‘No.'

‘That's good.'

I asked him why and he told me that in his experience people with religious beliefs
have a harder time dying than non-believers like me.

‘I can't be certain why this is,' he said, ‘but it probably has to with attitudes
to pain, and whether a person believes it serves a purpose.'

BOOK: Dying
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