Experiencing end-of-life care through my grandpa

shannon-loughs-profileShannon Lough is a news journalist for the CMAJ

I found out my grandpa had a stroke on Thursday night. 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; in one year it’s supposed to be legalized across the country unless the government asks for an extension for more time to come up with its own set of laws. In the Supreme Court ruling, a competent adult must ask for physician-assisted death, and it can’t come from an advanced 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.

Donald Guild (Pa), Audrey Guild (Nanny) and Shannon Lough at an RCMP event in 2006. Courtesy Shannon Lough.
Donald Guild (Pa), Audrey Guild (Nanny) and Shannon Lough at an RCMP event in 2006. Courtesy Shannon Lough.

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 government has a year to come up with legislation on how physician-assisted death will work. The Supreme Court never ruled out advanced directives, but it never ruled it in either. It’s up to the government to consider including it as part of its set of laws, to give anyone who faces this harsh reality a better option than what my family and many other families have had.

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.

5 thoughts on “Experiencing end-of-life care through my grandpa

  1. Ed

    Dear Shannon, your story is touching and please accept my condolences.

    You also raised a very important point. You said that there were no palliative care beds left and no palliative care doctors. This is very concerning.

    Where is the request to have this crucial service (palliative care) present?

    Your grand-father probably gave a lot of himself in serving our country. At the end of his life, the very least of things, is to have the community provide decent palliative care. He was entitled to receive such care, yet him, like many others are not receiving it.

    I think there is a need to request palliative more seriously from our authorities so that all Canadians may access it at the end of their lives.

  2. Gerald Ashe

    This is such a common scenario. Kudos to your family for honouring your grandfather's wishes. So often family's succumb to pressure from medical staff to insert feeding tubes, IV's etc. Six days seems like a long time but if your grandfather is sedated adequately he should not suffer during those final days. The same is not true for family members who spend hours and often days at the bedside. We do have to be careful however, that we are acting to relieve the patient's distress rather than the family's. I am a proponent of assisted dying but could not participate as a physician if the patient was not able to, in some tangible way( a blink of the eyes, a nod of the head) acknowledge the request.

  3. Catherine Ferrier

    If everyone in Canada had access to high quality end of life care, there would be virtually no lobby for assisted suicide or euthanasia. The problem, as this story illustrates once again, is that we do not. No one in a Canadian hospital should suffer from uncontrolled pain and other symptoms as death approaches - but it happens all the time.
    So-called "assisted dying" may seem attractive as a solution, but common sense, as well as the experience of other countries, tell us that removing the clear limit that now exists in law and ethics ("do not kill') leads only to more and more painful situations.
    There is a big ethical difference between allowing someone to die from the natural progression of their disease, on the one hand, and euthanasia or assisted suicide on the other. The first is to give in to the fact that we are mortal and that there are limits to what medicine can do. The second is to willingly and actively cause a person's death. We go there at our peril.
    Let's focus on excellence in end of life care for all.

  4. clare

    I saw a father in laws long long death in great pain from prostate cancer that had gone to the bones ...who said to his son...if you love me son...kill me................the nurses didn't have enough time to up his pain medication to the point he turned up the machine him self....only to be reprimanded not apologized to........then I too sat by my Mothers bed after a stroke waiting for her to die....this time there was pain meds but no privacy...a hall way bed until I had a tantrum and she was moved to a surgical ward were there was more peace for the family who visited .....I have lung cancer stage 4.......what will my end look like...I am hoping there will be an assisted death when things get too bad.


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