Debra’s story: My father was forced to suffer for months before he could access assisted dying

It was a horrifying emotional and physical roller coaster that never seemed to end. Austin, an Ontario-based man whose last name has been withheld for privacy reasons, first made the request to die with medical assistance in late 2016, at the age of 89. Time and time again, his access was cruelly denied and obstructed by medical professionals. His daughter, Debra, writes about her father’s months-long struggle to access his final wish.

My father was an ordinary man, an outdoorsman. He was a deliberate man who came to his decisions after much consideration. Born in 1927, he grew up on a farm and delighted in everything about the outdoors. He enjoyed animal husbandry, fishing, hunting, but most of all gardening. He grew anything and everything. He fed his family by his own hand as we grew up. He was a school teacher, who wrote poetry and taught himself to play the guitar as a teenager. He had an insatiable quest for knowledge. He found true pleasure in sharing what he had learned through experience or from books. He prevailed against colon cancer and bladder cancer, and had a hip replacement and a pacemaker. He also wanted to die with dignity in his home.

Austin performing at a local open mic event in 2010.

Our mother passed away suddenly from a brain aneurysm in 2006 and dad was living on his own. After a fall in his home in late September 2016, which resulted in a blood clot on the brain, he was hospitalized. When it became clear that he was never going home and would never return to the outdoor life he loved, he asked his doctor about medical assistance in dying (MAID). His doctor refused to discuss the subject. He said he had taken an oath and was into saving lives, not ending them. My father’s response was, ”There is nothing left to save. Use your time, skills and facilities to help someone who has a life ahead of them. I am 89 years old and had a wonderful life. I will leave it with no regrets.”

So dad remained in the hospital waiting for a bed in a long-term care facility. He contracted pneumonia and the toxins from the infection made him delirious. His doctor declared he was no longer capable of making his own medical decisions. His mental clarity returned once the pneumonia was gone, but that entry remained in his medical file. Dad’s medical decisions were now the responsibility of my brother who was his Power of Attorney. He asked the doctor about an assisted death again. The doctor finally gave him an information package from the closest MAID team, but that note in his medical file about his capacity made him ineligible for an assisted death and the doctor knew it. We did, too, once we read the information.

After four months in the hospital, dad was bedridden, had little or no control over his bodily functions and could barely feed himself. He could not read, his hands were not steady enough to use his tablet and he couldn’t focus well enough to watch television. But worse than these physical impairments was the mental anguish of waking up every morning. He prayed every night that this would be his last. The psychological toll of facing yet another day of looking out the window at a world that was lost to him or watching the hands on the clock go around, made his life intolerable. My father had been reduced to living inside a body that no longer served him. There was absolutely no quality to his life. He told his family, “You have no idea what it is like to live without hope.” It was difficult to visit him every day and watch his decline and growing despondency. He did his best to be sociable and agreeable for visitors but some days he just was not able to put on that brave face. He was in mental anguish every conscious moment.

Resistance and obstruction at every turn

In early February, a family meeting was held where all four of his children agreed to continue to pursue his wish for an assisted death. For six weeks, we tried one avenue after another. My brother asked that all his medications be stopped. Finally, the doctor complied, but surprisingly, this had little effect. Dad went on two hunger strikes, but would get confused from the low blood sugar and then the nurses would coax him into eating again. He had a pacemaker, and through my brother, withdrew his consent for that medical treatment and asked for it to be turned off. His doctor said he would facilitate this request. He did not. We went to the hospital administration and complained that they were forcing a medical treatment on dad. They made one excuse after another and then stopped taking or returning my brother’s calls. After two weeks of giving us the runaround, they said they could not find a cardiologist who was willing to do it. We despaired. We had met resistance and even obstruction at every turn from all the medical staff, except one. A supportive registered nurse practitioner discreetly told me to look up the Health Care Consent Act and read the section on capacity.

It stated there that a person can return to mental capacity. Armed with this new knowledge, I contacted the MAID team, but they said we had to have a referral from a doctor to get involved. My brother implored dad’s doctor for the referral to MAID. He delayed for a week and then with great reluctance and disapproval, he conceded and divested himself from the situation.

Austin and Debra in November 2015

Dad had made a verbal request for an assisted death and now he made a written request. A different doctor had taken over his care and he declared that dad had returned to mental clarity. Dad now met all the criteria for an assisted death and passed his initial assessment. We were allowed to be present at the assessments, but not to participate. At the end of the second assessment, when the doctor confirmed that he was a successful candidate, our father cried tears of relief and joy. We did, too. He wanted the procedure completed at the soonest possible time. That turned out to be 13 days from the start of the process and six days from his second assessment.

We had to work out all the logistics. Nine months after Bill C-14 had received royal assent, this hospital had no policy or procedures regarding assisted death. The only information we got from the hospital administration was that the procedure could not be done there. They had the gall to suggest to my brother that we use the morgue in a nearby town as the setting. The next day, one of dad’s nurses stopped me in the hall and told me they were not supposed to voice their opinions about MAID, but she was going to tell me anyway. She thought it was appalling that we were killing our father.

It was hard for us to believe that these people were involved in health care. The vast majority ignored us, never supported us or showed us the least compassion as we traveled this difficult path.

Austin and his dog, Tina, in the hospital in February 2017, about five weeks before his death. It was, Debra says, “not a very good day for him.”

“Laughter and love”

Dad helped make the final arrangements for his funeral and last day. He picked out the clothes he would wear on his last day and for his cremation. He chose where the procedure would take place and what he would do on the last day. There was a lot of open and frank discussion about how everything would go. There were tears and much sadness, but mostly relief. When we went to pick him up from the hospital, he was waiting at the nurses’ station with a big smile on his face. We took him to his property and home one more time and then to my brother’s place. All of his family was there and his favourite meal was being prepared, including homemade butter tarts for dessert. It was a beautiful spring day and he watched the birds at the feeders outside the picture window as family members came and went, spending time with him as his energy allowed and napping when he needed it. Memories and old stories abounded as my brother’s home was filled with laughter and love. He savoured the supper we had prepared and then he rested. We had a wonderful celebration of his life that he was able to attend.

Austin at a family gathering in 2007.

A saline lock IV had been inserted in the back of each of dad’s hands at the hospital before he was discharged. It was easier to do there and the doctor wanted two, in case one failed. As the time drew near, a registered nurse arrived to check on dad and make sure the IVs were viable. When the doctor arrived, my dad said, “Am I happy to see you!” The doctor went over the procedure with him. They would administer three kinds of injections: the first was a sedative that put him to sleep, the second was a drug that put him in a medical coma so he could not feel pain and the third one stopped his heart.

Dad gave his final consent and made the ‘thumbs up” gesture. His children did, too. The injections were administered and he slipped into eternal peace in the arms of his family. Our tears flowed for our loss and for his gain. It was as gentle and tranquil as is possible to imagine. There was no struggle and no pain. He had never wavered from his first verbal request to his family to his final consent to the doctor.

For all of us, the procedure was a completely positive experience. The MAID team was professional, respectful and compassionate. The assisted death gave my father control over his life and how it ended. It gave him a choice. It was dignified. It was a commemoration of the life he had lived. For the family, it gave us the opportunity to say those important things and the time to prepare ourselves for his leave-taking. We were able to do all those last little things for him and with him. It has eased our sorrow and grieving.

Dying With Dignity Canada extends a heartfelt thank you to Debra for sharing her father’s story and shining a light on the many barriers to assisted dying access that continue to exist in Canada.

Update: Austin’s story led to significant changes in his community. Learn how here.