Life and death

Pam
Pam Frampton
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I grew up with religious faith as a constant, as much a part of the structure and security of our home as the roof and walls and foundation.

My parents and the church both instilled the notion that death would arrive at a time of God’s choosing; that we had no input into when our end of days would come.

Later, in university, when I had done my own thinking about religious faith and was formulating my own beliefs, I was freaked out by a friend’s idea that our “death date” was somehow mystically pre-ordained, and that each year of our lives we lived through that day on the calendar, blissfully unaware of its significance.

There are people who take great comfort in their belief that God is with them throughout their lives and will accompany and comfort them to the end, as well as in the life beyond.

I respect the fact that faith gives some people strength and support.

My own beliefs are less sure-footed.

Life’s end is sometimes random, through freak accident or unexpected injury or as a result of someone else’s rash or deliberate actions.

Other times, death is caused by a terrible, terminal illness, whether after a mercifully short time of suffering or months and years of lingering anguish.

Sometimes that illness robs you of mobility and physicality or one or more of your senses; other times your lucidity is the target of its thievery, to the point that you can’t make rational decisions, distinguish between fantasy and reality, or even recognize the people you love the most.

Sometimes death is a cruel, multi-headed beast that attacks on all fronts, and sometimes it arrives far too soon or just in the nick of time.

At any rate, death — or, more precisely, end-of-life care — has been trending as a topic of conversation in Canada recently.

Last week, I sat in on an online live chat hosted by macleans.ca featuring Canadian Medical Association president Dr. Louis Hugo Francescutti, who is advocating for more progressive palliative care.

“People need to make sure their families are aware of their wishes,” he said.

“It’s also important to appoint a proxy to ensure your wishes are followed should you not be able to communicate them.”

And yes, advance care plans are vital if you want to choose for yourself the kind of care you want at a crucial stage of your life.

Pierre Trudeau, for example, according to Althia Raj’s book “Contender: The Justin Trudeau Story,” refused to be treated for advanced prostate cancer, as he hoped it would take his life before his diagnosed dementia would.

That was his choice, and it was  cancer that eventually claimed his life.

As Canadians are living longer thanks to advances in medicine, more and more of us are at risk of developing dementia later in life, with or without other potentially fatal conditions that could kill us before dementia does.

According to the Canadian Institutes of Health Research (CIHR),  in 2011, 747,000 Canadians had Alzheimer’s or related dementias. By 2031, that number is expected to climb to 1.4 million.

And dementia carries a high price — for those who have it, their families and Canadian taxpayers generally.

CIHR says the economic cost of dementia was $33 billion in 2011 and by 2040 it’s expected to hit $293 billion.

Some would say the emotional toll comes at an even higher cost.

Of course, people can live enjoyable, active and fulfilling lives for years after being diagnosed with dementia.

It’s the advanced stages that worry many people, particularly in a country that still uses medication — sometimes inappropriate and potentially harmful medication — to mask or subdue dementia symptoms and behaviours.

I’ve talked to several people of my generation who say the idea of spending months or years on a dementia ward is not how they want their lives to end, no matter how wonderful the quality of care they might receive.

And if they were given a safe and legal option that would allow them to forego that leg of life’s journey, they would gladly take it.

There are people in advanced stages of dementia who are dearly loved and regularly visited, drifting calmly and benignly toward death. If people diagnosed with dementia are OK with having their lives end that way, that’s a personal choice — one I’m glad exists.

But legislation does not yet offer an option for Canadians diagnosed with dementia who do not want to risk ending up isolated or immobile with little or no awareness of the people around them, slowly losing of their faculties one by one.

Medically assisted death is still prohibited.

Or, as a physician I know observed the other day, the law of the land in Canada allows you to ensure that a beloved pet dies with dignity; just don’t go demanding that for yourself.

Pam Frampton is a columnist and The Telegram’s associate managing editor. Email pframpton@thetelegram.com.  Twitter: pam_frampton

Organizations: Canadian Institutes of Health Research, Canadian Medical Association

Geographic location: Canada

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  • Terry
    May 25, 2014 - 20:32

    Pam, excellent commentary ! If you haven't viewed the documentary have a view on YouTube "Terry Pratchett: Choosing to Die", Fortunately I can afford the trip,and have contacted Dignatas, It is an option I will explore, when I believe the time is right for me. Having witnessed close friends and relatives literally starve to death in palliative care, or suffer for days until a compassionate Dr. authorized a large dose of morphine, I am now determined that my children will not suffer along with me. It would be selfish of me to let that happen!

  • Pierre Neary
    May 25, 2014 - 20:16

    Thanks for the great column.

  • Cathy Sheehan
    May 25, 2014 - 19:07

    Hi Ms. Frampton; I just read your column on 'End of Life' and must commend you for your frankness. I too was raised in the atmosphere you described....As I grew and began to learn, observe, be witness many deaths, my thinking changed one-thousand fold. In February of this year I flew to Nova Scotia to be with my sister as she sat at the bed-side of her very ill husband. He had suffered far to long. On this particular day, he was in ICU after a life saving surgery....Slowly he showed signs of improvement. He woke up. He was totally lucid. A machine was brought into the room and he recognized it immediately as the "Dialysis Machine"... He was on this machine six days a week and had to be done today. But he looked at his family that watched this young man who suffered for far to long and said; " No more, I want to die today" The Doctor explained everything that they could do to save him once again and warned him of the consequences of his actions. He understood. He chose to die.....it was peaceful and with great dignity.......I visited my friend's mother who suffered from dementia. When I saw her, she was in bed , sound asleep and cuddling a baby size doll ............my girlfriend lived out her last weeks in Palliative Care ...It was sad to observe someone shrink into nothingness, see the fear in her eyes, watch the life getting sucked out of her. ... Is that dying with dignity? We should all make sure it is written somewhere how we would like to spend our last days after lucidity....and no government should any say in the matter Thank you again Cathy Sheehan

  • Marty
    May 24, 2014 - 09:06

    There certainly have been major advances in Healthcare over the past couple of decades which is wonderful. However, I firmly believe that as a society we need and deserve advances in Palliative care/end of life options. I personally have witnessed the long and often painful demise of loves ones. I've always said that if you allowed an animal to suffer and fade away like that you would be charged under our justice system. We need/must demand the same empathy for humans. Of course there have to be checks and balances in place but where is the justice and humanity in prolonging the suffering of people who have no hope of recovery?

  • Alex
    May 24, 2014 - 06:54

    What you are suggesting is euthanasia, or murder. Being pushed into death because you think no one cares for you or will support you in your illness is not dying with dignity. Certainly, the life of a loved one is worth more than a stray animal and deserves better treatment.

    • Uncle Dolf
      May 24, 2014 - 20:13

      Alex, any member of your family have cancer? Four of mine did, and each died suffering something awful. The word itself is trail's end but what's endured is cruelty.