Seeking death with dignity

For eight days, Misbah Elalami had to watch his father, Adham, starve to death in a Mississauga hospital bed. Doctors had exhausted every possible option to save his life...

For eight days, Misbah Elalami had to watch his father, Adham, starve to death in a Mississauga hospital bed.

Doctors had exhausted every possible option to save his life, including a partial lobotomy and numerous other surgeries, some of which may very well have been futile. Misbah lives in Whitehorse and flew home so he and his family could make the awful choice between continuing life support in a hopeless situation or allowing his dad to die a “peaceful, natural” death.

But Misbah says there was nothing natural or peaceful about it. Deciding to end his father’s life support was a death sentence, but the way he died was needlessly slow and cruel, he says.

“It was a horrific eight days. I was there watching his chest go up and down, watching him get up once in a while from his morphine gaze and holding his hand. I heard the gurgling and I saw that he had tears near constantly running down his face,” Misbah said.

“You’re allowing this guy to die in his bed, but you’re saying it’s illegal to hasten it along.”

Five months ago, Adham suffered a seizure that put him in the hospital. He was diagnosed with stage-four glioblastoma, a brain cancer that meant certain, if eventual, death.

While he was sick, his dad got some of the most incredible health care he could have imagined, said Misbah. The system did everything it could, but in the end the best thing for his dad was something that isn’t legal in Canada.

Both euthanasia (where a doctor administers a lethal dose of drugs) and physician-assisted suicide (where the doctor provides the drugs but the patient administers them), are banned in this country. On Thursday, the B.C. Court of Appeal upheld that ban, after it had previously been dismissed for violating the Charter of Rights and Freedoms.

Several plaintiffs, including ALS patient Gloria Taylor who died unaided in 2012 and the children of Kay Carter, who travelled to Switzerland to seek doctor-assisted suicide in 2010, launched the court challenge in 2011 seeking the right for Canadians to choose how to end their lives in cases of terminal illness.

That’s exactly what Misbah wanted for his father.

“He was a really good guy. He was a funny guy. He never complained. He was an honest guy with a lot of integrity. He was a really good man and, I think, really undeserving of those last 10 days. There was just no need for it,” Misbah said.

“Even serial killers in the States get better end-of-life treatment. They tranquilize them and then they put them out. Here, it’s barbarism on a weird scale. Why would you do that to someone? What does eight days in a morphine coma buy you?” he asked

The B.C. Civil Liberties Association, which helped the families of Taylor and Carter fight the court battle, said on Thursday it will ask the Canadian Supreme Court to hear an appeal.

In the meantime, Misbah said he wants to see the Yukon follow Quebec’s lead. That province tabled its own right-to-die legislation earlier this year, and is gearing up for a fight with the federal government over who has the jurisdiction to govern someone’s final days.

But Canadians aren’t ready to have a meaningful discussion about euthanasia, said Dr. Rao Tadepalli, the president of the Yukon Medical Association.

“You’re talking about hastening death. That needs a bit of societal maturity that we do not have right now. We’re at least 10 or 20 years away from that,” he said.

Eventually, assisted suicide should become a part of the palliative care tool kit, but it shouldn’t be doctors deciding who can access it, Tadepalli suggested.

Instead, he proposes a kind of care and concern board, with a lawyer to represent the interests of the patient and where doctors and health-care providers would only provide medical advice.

“Playing God is not in the hands of doctors. It’s in the hands of society. We need a much more broad approach beyond just a doctor saying, ‘That’s it, you’re done.’ But that requires a conversation that we as a medical community are not anywhere close to having,” he said.

Rather than discuss whether doctors can legally kill someone in terminal pain, Tadepalli said it would be far more useful to look at ways of preventing awful, drawn-out deaths in the first place.

“Where we are missing the buck is that we are interfering with the natural process of death. It’s not talked about – the simple concept that we’re all going to die,” Tadepalli said.

“Of course, everyone wants a full life but no one talks about dying comfortably and the way that should happen. We haven’t pushed the end-of-life talk as we should do with everyone,” he said.

According to the Royal Society of Canada, some assisted deaths are happening in Canada already, with blind eyes turned to the matter and little clear conversation.

“Assisted dying presently goes on in various medical contexts in Canada,” the 2011 report states.

Tadepalli insisted that such actions would be illegal, and said he had never heard of any doctor doing such a thing.

But we should still try to have the conversations about the end of life, he said.

People need to accept that sometimes extending life at all costs is worse than allowing for a comfortable death, Tadepalli said. And the longer someone is kept artificially alive, the worse their eventual death can become.

But doctors can’t make those decisions themselves. They have to come from the family, in the form of advanced-care directives.

The problems that the Elalami’s faced are the same ones that far too many Canadian families run into, Tadepalli said.

“We need to be having conversations about what your treatment options are, and whether families understand them. For some people, life at all costs is what they want, and that’s fine, but for others we need to have more palliative options available,” he said.

That’s one lesson that Misbah learned the hard way.

“I still carry the guilt because it was too late to really ask him directly at the end. Everyone needs to fill out their advanced-care directives. Get your wishes down on paper,” Misbah said.

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