Experiencing end of life through my grandpa

I found out my grandpa had a stroke on a Thursday night last summer.

Originally published in CMAJ Blogs July 9, 2015

I found out my grandpa had a stroke on a Thursday night last summer. He was doing work in the backyard where he collapsed; my nanny found him 40 minutes later and called an ambulance. Too much time had passed. This was his second stroke, the first occurred 10 years ago just moments before he was due to depart on a cruise ship to Alaska. Emergency crews attended to him right away and his recovery was almost seamless.

This time it was different. My family told me to stay put in Ottawa for the night, but in the morning my brother called and told me I should come right away. It took about four and a half hours to reach the hospital in Mississauga where my grandpa, who I affectionately named Pa as a toddler, lay with tubes and patches attached to his body. When my mum told Pa that I had arrived, he opened his steel blue eyes for a moment with a look mixed with confusion and – I hoped – even acknowledgement. Then his eyes shut, and I never saw them again.

On Friday night, the doctor told my family that his condition was permanent, he would never recover. When I looked at my Pa, motionless, unresponsive, I realize that meant he was going to die. My mum, my uncle and my nanny became the substitute decision makers and they agreed to a DNR (do not resuscitate) and to remove all life-sustaining interventions, which for him consisted of artificial nutrients and hydration. Basically, they agreed to “pull the plug” at the risk of prolonging my Pa’s now lifeless life.

In the agreement with the doctor, my mum, my uncle, my aunt and my nanny didn’t have to show identification, they didn’t sign anything, they just gave their word for what needed to be done and everyone in the room thought they knew what it meant. It hit them a day later, after the nurse removed his tubes, and everyone realized he wouldn’t die of the stroke – his heart and body was still strong – instead he would die from the withdrawal of water and nutrition.

The ban on physician-assisted death in Canada was struck down by the Supreme Court of Canada on February 6, 2014; and last week the federal government introduced the law that is being criticized for being more restrictive than the Supreme Court’s “Carter” judgement. The proposed legislation states that to receive medical help in dying a person must be a competent adult, and it can’t come from an advance directive, such as a living will, or from a substitute decision maker. In my Pa’s case, even with the ruling, my family would still have had to go through the torment of watching as he weakened, and listening to his outbursts of groans.

That week, we had no other choice either. We didn’t want him to spend another day in the hospital, but we knew we couldn’t take him home either.

He was “robust” as the doctors told us, his body was holding on. My nanny, my mum and my uncle stayed by Pa’s side every night. I was with him from late morning to evening for four days, and even for me it was too difficult to bear.

The palliative care unit at the hospital only has 10 beds and they were all full. There was no palliative care staff on the weekends so the nurses did their best for us, pumping him full of morphine and other drugs to try to calm his anxiety, or whatever pain he might be feeling. His outbursts continued regardless.

My Pa, who served 25 years with the RCMP, was supposed to get a private room as part of his pension benefits, but he shared a room with another elderly patient who would yell out in Serbian and English intermittently. The nurses were kind, and when they got the chance they arranged to put Pa in a room all on his own.

Over the weekend when I saw him, Pa lay with at least one or two family members holding his hands, as he fought for each breath he almost forgot to take. There were pauses where we thought he had finally let go, only for him to take a gasp again, and then continue the groaning.

Was he in pain? The doctors and nurses said he wasn’t. Maybe the drugs worked, but for a man who was known for being quiet most of his life, he spent his remaining days making noises that troubled all of us.

The Supreme Court never ruled out advance directives, but it never ruled it in either.

It is up to the government to consider including advance directives in the law but so far it’s been dismissed, even for those who have early onset of dementia and are still mentally competent.

The request must also be signed by two independent witnesses and evaluated by two independent physicians or nurse practitioners, and there is a 15 day mandatory period of reflection unless death or loss of capacity to consent is impending. Under this proposed law, the cruel reality that my family faced with my Pa will continue to be a part of the system.

The moral justification for allowing people to die through the cessation of treatment is the same moral justification that should allow physicians to provide assisted-suicide or euthanasia in cases such as this.

Pa died on Wednesday night, six days after he entered the hospital. After seeing what my family went through, I know now that I will prepare an advanced directive asking to have a doctor euthanize me if my family ever has to make the “pull the plug” decision. I just hope that it will be valid at the time if or when I’m ever in the same state my Pa was in.