Why Liam wanted the legal right to a dignified end
Liam Clarke was diagnosed with Pseudomyxoma Peritonei, a rare form of stomach cancer, in March 2014. In June that year, he wrote this article in the Belfast Telegraph about living ‘in the moment’, how his Zen Buddhist beliefs helped him find beauty in the face of death ... and why he wanted the legal right to a dignified end.
“The gods envy us. They envy us because we’re mortal, because any moment might be our last. Everything is more beautiful because we’re doomed.”
(Homer, The Iliad)
The great truth that life is sweeter, more vivid and more precious because it must end, washed over me like a wave as I looked into the anxious face of Anand Gidwani after he examined my stomach. “I must tell you I am worried, Mr Clarke,” he said. He asked me to call in my wife, Kathy, who was in the car outside the Ballykelly clinic, and explained that he was a stomach cancer specialist.
I am a Zen Buddhist and I had been meditating on the imminence of death that morning before leaving for the hospital, so this prepared me a little, but still the news came out of a clear blue sky. He told Kathy and I that he had detected an “omental cake” and that it didn’t look good. It was the Friday before Christmas, so he called in another consultant, Garth Beattie, to see how they could rush through some scans before the holidays.
Garth took over my case and was the first to tentatively suggest that it might be PMP — Pseudomyxoma Peritonei — a rare cancer which generally originates in the appendix and spreads by filling the abdominal cavity with mucin. That was why, although I had lost weight, my stomach had stayed distended. The “hernia” had also been a classic symptom of the pressure from my stomach. Through all this, Mr Beattie was a tower of strength — frank and straightforward to a demanding patient.
Internet searches revealed that Audrey Hepburn, the most famous person to have suffered from this disease, had died six months after diagnosis. After a battery of tests and scans, I was referred to Brendan Moran, a Dublin-born specialist, based in Basingstoke, one of the world’s main experts in this rare and under-researched condition.
When he finally gave me my diagnosis at the end of March, he told me that I probably have years rather than months, but added, “This thing will shorten your life”. Any chances of a complete cure would involve very radical surgery, known by patients as the Mother Of All Surgeries (MOAS); in my case, the chances of success were low, judging by the scans. He wouldn’t really know until he opened me up — and he thought it would probably come to that eventually. Removing some bulk could extend my life, even if some remained.
The beauty of life in the face of death is a very Zen concept. Every moment should be lived as if it was our last — as it could be. It isn’t a delay to be endured while waiting for something better, it is complete in itself.
A diagnosis like mine brings that home to you. Steve Jobs, the founder of Apple, a practitioner of Zen who died of pancreatic cancer in 2011, put it well: “All pride, all fear of embarrassment or failure — things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked.”
That is how we should live our lives, anyway, remembering death and the fact that life will carry on without us. Human relationships then become more important and winning arguments less so.
Loved ones are hit hardest and reduced to a supporting role in which they may be called on to play the part of widow, orphan, morale-booster, or long-term carer during a distressing and lingering decline. There can be a limit to the preciousness of the moment. Savouring chronic pain would be a challenge to most people, certainly to me.
At the moment, my symptoms are fairly minor. That characteristic PMP “jelly belly”, which has been building up for three, or four, years, is the main one. Energy levels are good. I have a generally positive attitude and life has increased in intensity. I have confidence I am in the best hands medically and I am able to enjoy my work.
That may change. My next scan is in mid-July, after which Mr Moran will advise me on whether the options have shifted, as will my oncologist, the painstaking and patient Dr David Conkey.
At some point I may get severe pain — some medics are surprised I haven’t suffered already. Life may not be so sweet if and when that happens. I have to wait and see, but it would greatly increase my peace of mind to know that, if the worst comes to the worst, I could ask my doctor to prescribe something that would bring my life to a dignified end. I have always believed that, now all the more in the face of an uncertain future.
That is why I posted a petition from the charity Dignity in Dying on my Facebook page. It urges support for Lord Falconer’s Private Member’s Bill on Assisted dying, which receives its second reading next Wednesday.
This Bill would allow GPs to prescribe the same sort of medication used in the Dignitas clinic in Switzerland.
It would bring the law in England, but not in Northern Ireland, where Stormont would have the final say, roughly into line with the US state of Oregon. It would allow patients to make clear, in writing and with suitable safeguards against depression, or lack of capacity, that they wished this option to be available to them.
It would also free medical advisers and others from the threat of imprisonment if they offered assistance.
Most patients and doctors I have spoken to agree with this, even if, like me, they hope never to go down that road.
For most people, though, there are fates worse than death and nobody should be forced by law to endure them.
The fear of slow, painful death blights life in the here and now.