Toronto Man ends his life to avert horrors of Huntington's disease
Printed on Sunday September 9th 2012.
Published on Thestar.com on Friday September 5th, 2012
The son hoped to escape his father’s fate.
His life depended on it.
As Nagui Morcos watched his university professor dad weaken and eventually die an anguished death from Huntington’s disease in 1988, he gathered visceral evidence of what might lie ahead.
Being tied down to a bed in hospital. Vacant. In constant pain. Deteriorating.
“Nagui always made it very clear to me that if he had the gene for Huntington’s, he had no intention of seeing it through to the end,” his wife Jan Crowley says.
When they first met in 1987, Nagui was a vibrant man, energetic, passionate, unlike anyone she’d ever met.
Both were in relationships at the time.
But a chance meeting two years later would bring them together for good.
They married in 1991 after a two-year courtship.
Just as the couple was trying to conceive a child, medical tests revealed he had indeed inherited the Huntington’s gene.
His two brothers, both eventually tested, were clear.
Nagui would be the final family member to carry the disease.
After lying in wait inside him for 45 years, the disease began revealing itself through symptoms that seemed all too familiar.
By January of this year, at the age of 54, he stumbled and could no longer control his constant, involuntary movements.
Drinks would fall from his hands. He would choke when he ate. He was dizzy and exhausted all the time. He struggled to remember words. His speech became indistinct.
With a terminal diagnosis, he decided to seize what little control he had over his life: to end it.
He would pre-empt the disease. He would leave his life as himself.
“I told him that I worried that he’d do something violent or brutal or something that might not work and he might survive in very bad shape and that I didn’t want him to have to think about that on his own or feel that he was alone,” says Jan.
“He told me, yes, he had been considering bridges and subway trains and the usual means of suicide but that he didn’t know what he’d do.”
Together they contacted Dying With Dignity, a Canadian right-to-die advocacy group that supports and provides information to those considering suicide.
“We’d never been able to talk to anyone else about it,” Jan says. “It was just our secret for a long, long time.”
Meg Westley, president of Dying With Dignity, understood the agony.
The path that brought Westley to Marcos followed a familiar narrative arc.
Fifteen years earlier, she watched her mother’s “wretched” death to breast cancer.
“She lost her breast, vision in one eye, her hair, she developed hideous widow’s hump on her back and became bedridden and in pain. It was a barbaric situation. You witness it and think, ‘What’s the point of this?’ It was miserable, undignified, horrible, and she wished there was an easy exit.”
For her, there wasn’t.
For Nagui, there could be, she believed.
Those seeking the organization’s help must have a terminal diagnosis or a progressive, incurable physical illness, be mentally capable and be free of any coercion, says Westley.
“If they are very determined in their own minds and clear having considered all options available to them that what they want to do is end their own lives, (we) provide information about safe ways to do this.”
Morcos decided he wanted Westley to be there when it happened.
She agreed.
He had found another confidant.
While Nagui felt most of his doctors at North York General were disapproving of his plans to end his own life, Dr. Sharon Cohen was different.
She listened carefully as he explained his plans to her last year.
Then, he asked her opinion.
It’s a difficult question for a doctor in Canada. Assisting suicide is illegal. Physicians fear for their careers and their reputations.
Few will even engage in the discussion.
“I made it clear that I fully supported him and everything he was saying and doing made sense to me,’” Cohen says. “He felt good that I did agree. He was very grateful.”
She put him through cognitive testing to make sure he was of sound mind and that his mental capacity was well-documented.
Then, she worried.
“It was a stressful period for me,” she says. “I felt nervous about whether I was doing the right thing from a legal standpoint and what the law might have to say about the conversations I had with him, although I felt morally I was absolutely doing the right thing.”
Nagui knew it wouldn’t be long before he would lose the physical dexterity required to accomplish the task.
He understood planning and logistics. He knew what it took to get things done. A professional life spent in corporate boardrooms and entrepreneurial endeavours had taught him that.
Born in Cairo, Nagui came to Canada with his family in 1967, when he was 10 years old.
After graduating from McMaster University with a commerce degree in 1979, he forged a successful career in food marketing and retailing, working for some of the largest manufacturers in North America.
At one point, he also ran a popular local cheese shop - The Cheese Dairy - in the city’s west end.
They were life skills he would redeploy for the purpose of ending his life.
“In deciding on the timing for hastening my death, and to stay within the current laws, I had to do this myself and couldn’t get any help,” Nagui wrote in a farewell message to family and friends. “It was a precarious balance between doing it too early and missing out on my rich life, and doing it too late when I was no longer capable.”
In January, after two years of planning, he set a date for his own death: April 22.
In the year leading up to the day, Jan took a leave from her job as a college professor to be with him. They travelled, talked, reflected. She played devil’s advocate from time to time and went for counselling and therapy to help her resolve her own feelings.
“How can you possibly prepare yourself to let someone you love go like that?” she says. “Thinking about it and anticipating are not at all the same things as going through it. I felt a lot of fear and trepidation and dread. But it wasn’t about me. It was really about him and his need to have control over his own life and body and destiny.”
Two nights before the appointed day, Nagui and Jan sat in Roy Thompson Hall listening to opera singer Renée Fleming. One music reviewer in attendance wrote of Fleming “bewitching” the audience with songs of “love, loss and enchantment.”
The next day, Westley and a colleague met with Nagui and Jan at their Toronto apartment. He still seemed mentally sharp and mobile to Westley, moving around the kitchen making coffee as they spoke.
“It was a real tragedy that he had to do this with a year or two of quality of life left,” she says. “But his fear was that he would not be able to perform this act he’d chosen if he waited.”
Westley asked Nagui if he was sure.
He was.
They agreed to meet at his home again the next day at 2 p.m.
“We told people we’d be out of town that weekend so the phone wouldn’t be ringing,” says Jan. “It was a beautiful final evening eating his favourite meal and drinking champagne.”
The next morning, they awoke to sunshine streaming through the windows.
It was quiet.
“There was nothing more to do or say,” Jan says, struggling with the words. “Just to be close.”
Nagui prepared himself to die that afternoon with paperwork neatly arranged and organized.
Yo-Yo Ma played on the stereo.
He sat in a chair in the bedroom as Jan said goodbye.
She asked one more time: “Are you sure?”
“Yes,” he said.
She asked: “Are you afraid?”
“No,” he replied.
Jan’s last memory is of looking in his eyes exchanging one final declaration of love.
“He told me he wanted me to be happy and he was ready and he was sure. It was time.
“It was the hardest thing I’ve ever done.”
In his farewell letter, Nagui apologies for the “grief” caused by his decision.
Then, he explains.
“For people like me, who are terminally ill or have an incurable progressive disease and are steadfast in their resolve to hasten their death, nothing that anyone could say or do would make a difference. This issue will never go away - people like me will continue to hasten our death somehow. You must let us go.”
A few days prior, Jan had sought the advice of a lawyer on the legalities of witnessing her husband’s suicide.
His strong recommendation was to remove herself from the apartment when it happened.
Take a walk, he urged.
She couldn’t do it, afraid that something might go wrong or that her husband might have a final thought to share with her.
So, she and Nagui agreed that she would go into the next room when he committed the act.
She rose from their embrace and walked away. She would never see him again.
As she left the room, Westley and her colleague entered and remained with Nagui.
Jan waited in the next room, Mozart playing on the stereo.
She passed the minutes writing in a journal she’d been keeping over the past year - called “The Year of Last Times” - that documented all of their final celebrations, from birthdays to Canada Day to Thanksgiving.
Neither Jan nor Westley will discuss the details of how Nagui ended his life, citing privacy and the ever-looming legal concerns about assisted death.
“I felt some anxiety that something would go wrong,” Westley says, “that he might not die, that something unpleasant would happen, and I wasn’t sure that I would know how to deal with it.”
She watched his breath until it eventually stopped.
Silence.
Eventually, they reappeared before Jan in the next room.
“They both looked pretty shattered to me,” Jan recalls. “It was very quiet. Very quiet.”
About an hour later, Jan called the non-emergency police number to report her husband’s suicide.
The time delay was Nagui’s wish. He didn’t want paramedics attempting to resuscitate him.
Within minutes, the sound of sirens from EMS and police cars grew louder.
Police and officials from the coroner’s office arrived.
“At first, they couldn’t believe what we were telling them,” Westley recalls. “We said we were there. Within a short time, they came to the realization that we were witnesses and had to be separated because we might be cooking up some story.”
The three were separated in the lobby of the Toronto apartment building to be interviewed.
Westley agreed to go to the police station to give a statement.
“We were trying to be very co-operative because we didn’t want to act as though we’d done anything wrong.”
After several hours of waiting, two detectives told her they would ask the Crown the next day how to proceed.
“They repeatedly said, ‘We’ve never seen anything like this before. We don’t know exactly how to handle it.’ They really were gobsmacked. They didn’t know what to do.”
Last week, police called Jan to tell her they had closed their four-month investigation. No charges were laid.
The death was declared a suicide.
Dr. Cohen’s voice begins to soften and gently break when she recalls the impact Nagui had on her, both professionally and personally.
“I was impressed with the determination of Nagui Morcos in following through with what he strongly believed and doing something very difficult at a time in Canada where he had to hasten his death without any assistance from his wife or his physician.”
As a specialist treating people with degenerative diseases like ALS, Alzheimer’s and Huntington’s, she often finds herself casting her mind forward a decade to imagine what her patients will be like.
“It’s not pretty,” she says. “It’s not what they want. It’s not what I want for them. And I was very glad for Nagui not to go down that path. I felt even more committed to be the best doctor I can for people. You couldn’t help but be inspired. He did the right thing for him.”
For Jan, recovery from the emotional loss of a man she was married to for 21 years comes slowly.
She hasn’t returned to work yet. She’s considering extending her leave from her teaching job at Seneca College.
“I don’t have the heart to teach now.”
Her voice wavers.
“I’m glad that he’s free now,” she says. “Death comes in very slowly to your awareness. I know intellectually that he is gone but it’s taken me a long, long time to accept it in my body and heart. It’s hard. I miss him terribly.”
“I am so proud of Canada for being such a progressive nation - we’ve accepted divorce, abortion and same sex marriage,” Nagui Morcos wrote in his farewell letter. “It is now time for us to do the humane thing and embrace choice for the terminally ill to have medical assistance to end their life when it has become unbearable. I now pass the torch to you, my dearest family and friends, to do the right thing and change this so that you and your loved ones will have more choice than I did.”
Back to Articles