Colette’s story: My mother fought for her right to assisted dying. This is her legacy.
Personal Stories | December 8, 2017 | Colette John
Not long after Canada passed its assisted dying law in June 2016, British Columbia’s Mary John submitted her request and was approved. But her joy over being able to die on her own terms quickly turned to additional pain and frustration when hospice staff repeatedly obstructed her access, needlessly prolonging her life and her suffering.
After weeks of this active interference, Mary finally got her wish: She became one of the first British Columbians to access assisted dying — if not, the first. Throughout her weeks-long ordeal, she and her family never once stopped advocating for her right to a peaceful death.
In this powerful blog post, Mary’s daughter, Colette, and her boyfriend, Dean, share how Mary’s fight for choice and compassion was able to pave the way for patients and families in her community and province.
To the best of my knowledge, Mary John was the first person in British Columbia to access medical assistance in dying (MAID). But, to many people, she was more than that. Her short stature — 4’9″ — did not represent the size of this woman’s heart and soul. This is the story of a mother, her journey in life and her choice on how it was to end.
I first met my girlfriend’s mom, Mary, in 2006 and the first thing that struck me was her size. Yes, she was a small woman to say the least. You could also tell just by the way she walked and by looking at her posture that she had back problems. It didn’t take long to discover that she was far from shy about her desire to move on to the next life.
For decades, Mary lived with chronic pain from back surgeries in the 1980s that did not work out well for her. Her body may have been wracked in constant pain but you would never know it when you listened to her. She enjoyed life and all things in it — from how to properly eat apple wood-smoked cheddar cheese, to her desire to travel to new places, to her deep and intense love for seafood. Under that love of life was her open readiness to die, not because she was done living — far from it — but because she was done dealing with the pain. Throughout the 10 years I knew this remarkable woman, I learned quite a bit about love, living, and dying.
Mary in her favourite chair in 2015.
Five years prior to my meeting her, Mary had to endure every parent’s worst nightmare: watching her oldest son (she had two girls and three boys) die from a terminal disease that would slowly take his life. He was married with two young children of his own. And in 2001, he finally succumbed to his illness after fighting for four years.
Then, in 2007, her husband passed after a long struggle with cancer. His passing was long and drawn-out. I was there with her daughter — my girlfriend — Colette, and her other children. It was tough on everybody and the end did not come easily or quickly.
In 2009, Mary asked if she could live with us as she was no longer feeling safe being home by herself, and she was also feeling a little lonely. Colette and I were looking for a new place ourselves so we found something for the three of us. Our new home was a place of love. We travelled together and lived together quite happily.
Over the years, as Mary’s back pain progressed and became worse and worse, we would take her to her treatments at the pain clinic. As she went from one course of action to the next, she could not find any relief and was never shy about how much she was ready to move on. Of course at this point of time, MAID was not even on the horizon. She lived her life every day despite the pain, and by 2015, we had our last visit to the pain clinic. Mary had literally tried everything to manage and cope with the pain and now the doctors were telling her that there was nothing more they could do. Mary did not want to spend the rest of her life in a drug haze just to deal with pain. As long as she was here, she was committed to living her life. But by 2016, a number of things happened.
In 2015, Mary fell and broke her hip, and would then spend the rest of her life using a walker. Chronic obstructive pulmonary disease (COPD) also started to take its toll. And now, every parent’s worst nightmare was unfolding again: her oldest daughter was diagnosed with leukemia.
By 2016, it was determined that my girlfriend was a perfect match for her sister and the process began. Enough blood product was produced for a successful transfer, and everything was looking up. Chemotherapy had taken its toll on Colette’s sister — Mary’s daughter — but it did its job, and the blood product was successfully introduced. My girlfriend had talked with her sister earlier that day and it looked like she was going to be released from the hospital and come home the following day. That night, however, an unforeseen complication suddenly took her life. She remained on life support until the following day, when the family could gather. For a second time, Mary had to bury one of her children after a struggle with a terminal disease.
Not long after the passing of her oldest daughter, Mary was told she had cancer. While the family was coming to terms with the loss of one of its own, Mary was happy to learn that her days of suffering were coming to an end. She refused treatment and was happy to let nature take its course. Some members of the family were upset, of course. Mary was blessed with children, grandchildren, great-grandchildren, and great-great-grandchildren — five generations in all and pictures to prove it!
Five generations: Mary with family in 2011.
With the prospect of a year to live, Mary wanted to embark on a road trip to see her remaining family members with the time she had left. And so we hit the road. During this road trip, she fell during our last stop and broke her other hip. Physically, she was enduring more pain than most people will ever know. She had not fully recovered from her first broken hip, and she had lived with chronic pain for 25 to 30 years. She also lost her husband of 56 years and had outlived two children, losing all three to chronic disease, which she was now living with.
And suddenly, her other hip was broken. To say things were tough would be putting it mildly, but still, she smiled. For those that didn’t know the depth of the pain she was carrying, they were amazed at how good her spirits were. But my girlfriend and I lived with Mary and knew differently.
By 2016, Mary was dreading the time to come. Chronic terminal illness is cruel, not just for those who have to endure it, but for those who are connected by love as well. By the spring of 2016, Mary was admitted to a hospice house for her final days. Her body, wracked with pain, was slow to die. When news of MAID was announced, Mary wanted her daughter to sign her up at the earliest possible moment. The first day it was available, the call was made and the process was started. We had no way of expecting the fight that was about to ensue. All kinds of roadblocks and interference on so many levels were about to arise.
Mary at her hospice in 2016.
Dr. H was the doctor responsible for MAID. Dr. H had been to the hospice house to discuss the newly available assisted dying procedure in Canada. It was during his second visit to the facility that things started to change. Prior to this visit, hospice staff were trying to move Mary to a different facility. Mary was coming down to the last three months of her expected life expectancy, well within their guidelines for staying there. For whatever reason, they were trying to move her, when Dr. H paid a visit that changed her life.
Dr. H came and interviewed Mary and determined that she met all the requirements for MAID. Mary was happy: she was going to get the chance to end her life on her own terms before she was forced to endure more pain and suffering than any human should have to endure. A small group within the hospice house, however, did not approve of the new MAID procedure because of their own religious beliefs. They actively interfered and tried to stop the process.
Under Canada’s MAID legislation, two independent doctors must examine the patient. Dr. H was the first, and while waiting for the second doctor to arrive, the first roadblock was put in place. Someone at the facility performed a Montreal Cognitive Assessment (MoCA) test on Mary and determined that she was mentally unfit. They then forwarded the results to Dr. H.
When the family found out about this, we questioned the administration about why they were interfering. They lied to our faces about interference. The family was not informed about the test until after it was done, and even then, we had to hear about it from Dr. H. The facility refused to identify who administered the test and who ordered the test. They claimed that they perform MoCA tests on all their patients at the hospice house. But if that was the case, why was the family not informed? Why was Mary’s family doctor not informed? We later found out that Mary refused to do the test, but they administered it anyway and gave her a very low score, determining that she was unable to make her own decisions.
This Bill of Rights appears at the entrance of Mary’s hospice. Despite what it says, Mary was judged for her assisted dying choice and was actively obstructed from access by hospice staff.
With this roadblock in place, Dr. H now had to look for a psychiatrist outside of our area to come and test her before they could continue. Nobody was willing to get involved in the growing situation. Finally, a doctor was found who was willing to drive four hours one-way just to test one patient. During this time, Mary was usually heavily medicated and was sometimes not even able to stay awake for the family who came to visit, often from out of town.
June came and went. We later found out there were other people at the same facility who were now in a holding pattern, waiting to see how this played out. The hospice house, a place where people go to die, ironically did not want the process done in their facility. However, they were unwilling to let Mary go home without all the proper equipment in place. Apart from all the items she was to have for accessibility at home, she was also to have a hospital bed. Normally, for palliative care, the bed is free. For Mary, the facility wanted to charge her $700 a day to rent it out. We were also told that medications were provided by palliative care and were not to be released as we did not purchase them. Of course, in order for Mary to be released, all of her medications had to be replaced.
With Mary being heavily medicated, it was hard for her to stay awake let alone answer questions about what she wanted or prove that she was mentally competent. Dr. H was called upon to fight every step of the way for Mary. Using social media and reaching out to the local media, the fight expanded. Not only was this prolonging Mary’s wait, but that of others who were wanting to do the same. Mary was the first one in B.C. to use MAID and there were plenty of people watching and waiting.
Mary loved footprints in the sand.
What should have been a private, intimate and peaceful end of one’s life became anything but. The medications were to be released, the bed was to be made available under palliative care and the medications were to be administered as the doctors had ordered, whether it was by Mary’s family doctor or Dr. H. What was supposed to be a 10-day waiting process had now stretched out to a month. That may not seem like a long time, but for someone with a terminal illness and chronic pain, spending their last energy fighting instead of sharing the love of friends and family must have felt like a lifetime.
Finally, the green light was given. My girlfriend had to do the hardest thing a daughter could ever do: ask her mom what day she wanted to die. The date and time were chosen. Mary was happy, and the family was also happy, but sad at the same time. The matriarch of the family was leaving this life.
“Still not finished interfering”
The hospice house, however, was still not finished interfering. We did not know it at first, but it seemed odd that they were confident that Mary would be back. They even said, “If for whatever reason, we will hold Mary’s bed here open.” We wanted her to come home the night before the scheduled date for her last dinner with all her favourites: lobster, crab, shrimp and steak. She wanted it to just be her and her children for the MAID process. The rest of the family showed up to say their last goodbyes and I love yous. We prepared a dinner for six, which became dinner for 20, and everyone was able to eat and have their fill. Mary was not quite with it as, again, hospice house interfered by giving her heavy medications. Throughout the day, though, she had brief moments of clarity that allowed her to spend time with each and every person there.
When the time came for the procedure, however, the hospice house’s last deliberate attempt was revealed. Mary had a number of intravenous lines, but only the one line that was needed to administer the drugs, was removed. The date and time that Mary had chosen for her death was not to be because Mary was too heavily drugged and Dr. H could not put in the line. There was no way, we were going to take her back to the hospice house under any circumstance. Plans were made for another medical professional to come in the next day to put in the line and help complete the process.
Mary loved sunsets.
A day later, her time had come. When the drugs were administered, Mary had an expression that could only be described as happy relief. She was smiling, and she looked so calm and accepting. As a family, we were surprised by our own feelings. Where we expected overwhelming grief, we felt relief. We had fought so hard every step of the way for Mary. We were selfish because we didn’t want her to go, but we made sure we fought for what she wanted. When Mary passed, we felt like a big weight was lifted. We hear that expression all the time, but the emotion was so strong that there was an actual physical reaction. Mary’s final moments were on her terms.
A day doesn’t go by when the family doesn’t think about her. She is so missed. She may not have known how deeply and how many lives she touched, but she definitely left this world knowing that she was loved.
We think, as a family, that there definitely has to be more education and compassion taught to the caregivers and health care professionals that look after all these beautiful souls. But thankfully, the hospice house did not escape unscathed. A full investigation was conducted by the hospice, which lasted for three months. The hospice house claims the staff changes were in process before this went down, but in the end, two to three people ended up losing their jobs. Another two to three were forced to work at another facility not dealing with terminal patients. In the end, the hospice apologized for obstructing Mary’s access and cited their lack of preparedness and “misunderstanding” amongst their staff as the cause. In their apology, hospice officials said Mary’s “advocacy for her right to access MAID…has made the path for future patients and families more seamless and this will be part of her legacy.”
There were many times when Mary would ask Colette to help her end her suffering, and Colette would say to her, “Mom, you cannot butt in line. There must be a reason why you are still here.” We figured out that reason when MAID came along and Mary found herself at the front of the line. She helped make things a little easier for everybody else in the line behind her.
Mary’s only surviving daughter, Colette, was supposed to write this using her own words, but she still finds it difficult to talk about. However, she wants Mary’s story to be told, so she sat beside me as I wrote every word. In her final edits of the piece, Colette made sure to add this note: “My mom lived for her family. She is our family’s hero.”
Dying With Dignity Canada is honoured to help Colette and Dean remember Mary John’s life and choice. We sincerely thank Colette and Dean for sharing this painful, powerful story. We are beyond grateful that Mary was able to have a peaceful death — and that the fight for her choice has paved the way for countless others.