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Knowing she could choose when to die was my wife’s escape valve. I’m glad she could do so legally

Not legislating for assisted dying creates a vacuum for bad actors to take advantage of other people’s misery and pain

Adrienne, my wife, used to call euthanasia her 'escape valve' in the sense that, because it would allow her to control her exit, she could live more fully.
Adrienne, my wife, used to call euthanasia her 'escape valve' in the sense that, because it would allow her to control her exit, she could live more fully.
Peter Cluskey
Sat Sept 16 2023 - 07:00

My late wife Adrienne Cullen ended her life on December 31st, 2018, by euthanasia. Although it didn’t take long, it was a strangely bureaucratic process in its way, signed off by not one but two doctors, the end of a long paperwork trail. For Adrienne, it was quite simply her last chance gone.

Aged 58, and a graduate of UCC who revelled in her busy job as English-language editor with Booking.com in Amsterdam, she got the news by phone one wet afternoon as she left the office: her hospital in Utrecht had lost test results in 2011 showing red flags for cancer. By then, it was 2013.

Adrienne spent the next five years doing two things: pursuing a legal action that finally forced the hospital, UMC Utrecht, to apologise; and trying desperately to survive, through chemotherapy (twice), radiotherapy and several major operations, one of which came tantalisingly close to success.

But not close enough. After more than four hours, her surgeon was as confident as he could be that he’d got all the cancer out. He’d even felt with his fingertips, he told me, a test honed by a lifetime of experience. In the event, one contaminated lymph node proved elusive.

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On such tiny, random events do our lives turn.

I was thinking of that the other day when I read Conor Lally’s disturbing piece about sudden deaths in Ireland allegedly following the procurement online of a concoction known here in the Netherlands as Substance X, a substance The Irish Times is choosing not to identify.

According to Dutch police, the same substance is connected to deaths here running into the dozens.

[ Clear majority in favour of permitting assisted dying – Irish Times opinion poll ]

Lally’s report revealed that gardaí have established Canadian chef Kenneth Law (57) sold the chemical substance to more than 10 people in Ireland, a small number of whom subsequently died. It is not yet known if their deaths were connected to consumption of the substance. Law is based in Canada, where he currently faces 14 counts of counselling or aiding suicide in Ontario. Recently, authorities in the UK have also begun investigating 88 deaths allegedly linked to Law and his poison. It is suspected he may have sold it to as many as 1,200 unfortunate people in 40 countries.

The case against Law is complex and still unfolding. But what it highlights is that there is a growing black market in the sale of these drugs, a market that capitalises on misery.

I pity those who need euthanasia; I pity more those who need it but cannot access it. I believe Irish citizens are empathic enough to feel the same, to embrace change and to legislate for assisted suicide

Euthanasia was legalised here in the Netherlands in 2002.

I can’t stress this enough: there is a world of difference between the professional hands of Dutch doctors who volunteer for the service, and the sale online, often on the dark web, of chemicals of unknown provenance that at the end of the day – a particularly apt phrase – commoditise human misery and frailty.

In Ireland, aiding and abetting the ending of a life still carries a maximum penalty of 14 years in jail. Here in the Netherlands, assisting suicide has a maximum tariff of three years for everyone except registered medical practitioners. The fact that it is legal - in cases where there is no hope of recovery and the suffering is “unbearable” - means there is a clear delineation between those compassionate doctors and those operating in the black market. Police have little hesitation about pursuing anyone who starts an opportunistic private enterprise on the margins.

[ Euthanasia is not a slippery slope. It’s a precipice ]

Despite the liberal regime, the debate here about euthanasia remains a live one. The centrist political party D66 at one point even tabled draft legislation that would have allowed anyone over 70 to opt for assisted suicide if they felt life was “no longer worth living”. Fortunately it went nowhere.

One well-known champion of further liberalisation is the psychologist Wim van Dijk (79), who admitted publicly in 2021 that he had sold a substance to more than 100 people, because he had seen what his wife went through before she died of the dementia that rendered her incapable of accessing euthanasia. “I am aware of the consequences of my story,” van Dijk, a member of the Last Will Co-operative which campaigns for more inclusive euthanasia laws, said at the time. “I really don’t care if they put me in jail. The law needs to change.”

There have been two other cases since then. A 29-year-old man is currently appealing a 3½-year jail sentence, 18 months of which was suspended. And a 76-year-old man is currently facing prosecution.

[ Euthanasia is sometimes the right choice ]

As I ponder these hard cases, the big question I keep coming back to is, if Adrienne had no alternative, might she have resorted to something like Substance X?

Her circumstances near the end – around the time she was awarded a wonderful honorary doctorate in laws by UCC – might have warranted it. Because she could not take opioid-based painkillers, her pain management options began to run out suddenly, terrifyingly and irreversibly – and so the decision to call it a day was essentially made for her by circumstances and by fear.

I cannot answer my own question and I don’t have the right to answer on her behalf. In any case, I have come to the conclusion that it is okay to be ambivalent. Despair leads down roads many of us may be lucky enough never to explore.I am glad she didn’t face that awful quandary in addition to knowing she had a wholly unnecessary pre-assigned date with death before her hair had even turned grey.

She used to call euthanasia “my escape valve” in the sense that, because it would allow her to control her exit, she could live more fully. And so Adrienne became a warrior, campaigning for open disclosure in Dutch hospitals after medical harm – and for an end to secret gagging clauses in medical settlements between patients and the publicly funded hospitals that harmed them.

I pity those who need euthanasia; I pity more those who need it but cannot access it. I believe Irish citizens are empathic enough to feel the same, to embrace change and to legislate for assisted suicide. Until they do, there will always be desperate people and a market in their exploitation. A humane system of euthanasia would help stamp that out.

If you are affected by any of the issues in this story, please contact The Samaritans at 116 123 or email at jo@samaritans.ie

Peter Cluskey is a journalist and broadcaster based in The Hague