Yvonne’s story, Part 1: My mother’s forced transfer and struggle to access MAID
Personal Stories | March 27, 2020 | Dying With Dignity Canada
This true two-part story details what Yvonne and her mother went through during her last few months of life. It describes her ordeal with her decision to stay in the hospital in her Northern Ontario city so she could be visited by her friends. It also describes her medical assistance in dying experience. She was forced to move because the only hospital in her city happened to be a Catholic hospital.
My mother was first diagnosed with lung cancer 19 years ago. The surgeon removed a section of one lung and my mother quit smoking. She had recently moved to a small Northern Ontario city, and she stayed there for many years, spending a good part of her time working outside in the yard. She made several good friends.
This past summer, she had been having some back pain and thought she pulled a muscle. She did not have a family doctor and she told me she was not allowed to go to the walk-in clinic either, since she didn’t have a family doctor. One morning in September she found that she could not urinate and had difficulty walking. She was holding onto the table causing it to shake so she called 911. She told me she spent hours, freezing, lying on the examining table. When evening came, she overheard the nurses asking what they were going to do with her. She spent that night in the furnace room. By the following morning, she had not urinated for 24 hours. An ultrasound was performed, and they started to realize the seriousness of her condition. She was sent by ambulance to the Northeast Cancer Centre where she stayed for two weeks undergoing all sorts of imaging tests and 5 days of radiation. She had stage 4 lung cancer with tumors in both lungs, her liver, her bones and spinal cord compression.
The only person she had told at this point was my ailing older brother. By the time I found out, my mother was back in hospital in her small city. She didn’t want my younger sister and me to worry until she had a full diagnosis. She told me not to come and that there was nothing I could do. I spoke to my employer about working remotely, packed my things, and made the eight-hour drive. She was surprised to see me. She was in a palliative care hospital room which had one patient bed, one large TV, and two comfortable chairs for visitors. My sister took some vacation days and we were able to have a nice Thanksgiving with mom. My brother was too ill to travel but we all spoke on my speaker phone daily.
My mother and I attended medical conference calls with oncologists. Neither more radiation nor chemotherapy would help at this point. My mother was told she had less than three months to live. I am not sure of all her reasons, but she did not want to go home for palliative care. It could be because she watched her husband slowly die from brain cancer. It could be because it would not have been possible to get her in the shower at home. She went from being a strong independent woman who spent hours outside gardening to a person needing a walker, not being able to sit for extended times with her legs down and having a urine bag. She also wanted me to go back to my house before the snow came and I was trapped in Northern Ontario.
One day when I walked into the palliative care room, the lights were down low and there were medical machines going. My heart plummeted. I walked back out of the room to the nurses’ station to find out what happened. They had moved my mom to a different room. I breathed a sigh of relief. During the month of November, my mom was moved rooms seven times to various semi-private rooms and the ward. Each move would cause some stress. She spent three days listening to a dying person’s moaning. At one point she was moved into a room with a patient that had a very strong odour. My mother has a sensitivity to smells. I would arrive to visit her and find out that she spent the day in the TV hallway because she can’t breathe in her hospital room. She was moved out of that room and then had that same patient with the strong odour moved into my mom’s room a few days later. My mom told her doctor and her nurse that she couldn’t breathe yet nothing was done. She spent the day in the TV hallway again. The stress was taking its toll on me as well causing panic attacks and hyperventilating. I called the local long-term care facility which directed me back to the hospital charge nurse and we looked at what options we had. Long term care had a six-month waiting list. She could be sent to a hospice in a bigger city, but it would be hours away from her friends who visit regularly. The hospital has one hospice suite, but it was occupied by the same individual for our entire stay. The hospital also had a couple of palliative single rooms, but my mom was not considered to be actively dying. My mom was adamant that she did not want to go home. Her doctor was adjusting her legs medication and pain medication as needed. Maybe she knew the toll it would have on me or she just did not want to die at home.
A couple of years ago, I helped my mom fill out one of those free will kits. It included a Living Will which stated that “if there was no reasonable expectation of recovery, then I request that medication be mercifully administered to me to alleviate suffering”. My mother said that no one should have to go through what her husband went through in his last three weeks of life and she signed the form. At one point, I asked the doctor if he was aware of my mother’s wishes. He said he was aware.
In December my mother was trying to fight a cold, and she had been coughing for days. I let my siblings know that things were going downhill. My sister came up to visit for a week. My mother mentioned that she had not signed any paperwork about her medical assistance in dying. I asked at the nurse station if they had her medical assistance in dying request on file. The nurse said, “We don’t do that here.” I was perplexed. I went to the Ontario Medical Assistance in Dying web page and called the care coordinator phone number. The care coordinator explained to me that because my mom is in a Catholic hospital, they cannot do the procedure there. At first the plan was for me to put together a written request for an “Effective referral for medical assistance in dying” to give to my mother’s doctor. This would legally force him to get her a referral. After some more discussion and my concern that they may not allow my mom to stay in her city hospital for the ten-day waiting period, it was decided that we could get started without notifying the hospital at this time. I printed the forms at the library.
On December 17th, I organized two of her friends to meet at the hospital to witness the “Patient Request for Medical Assistance in Dying” form. We happen to complete the signing just before a new roommate was wheeled in. I scanned the forms and sent them off using my phone. The coordinator contacted a medical physician and a nurse practitioner. I went to the hospital records office and asked them to send a copy of my mother’s medical records to the physician. We were able to arrange video conferences on my phone in the family lounge. Sneaking around made us feel like criminals. Both the physician and the nurse practitioner told my mother that this was a straightforward case and that her request had been granted.
My mother was given the choice of self-administering oral medication or having a physician administer the injection. She also had to choose between dying in her home or being transferred over two hours away to another hospital for the procedure. She did not want to die in her home, so she chose the hospital transfer option with the injection. Technically the procedure could have been performed as early as December 28th, but the physician was way up north and would not be back at the public hospital until January 4th. The plan was to notify my mother’s doctor about the hospital transfer request on December 30th. I left him a message with his office. I gave my mom a note to pass to him that included the remote doctor’s phone number. It took a couple of days, but the doctors spoke, and my mother’s doctor was supportive of her wishes. The non-urgent transport would be arranged.
*Editor’s note: When applying for MAID, a written request for a referral shouldn’t be necessary. While it is certainly an option, a person should be able to say, “I want to make a request for MAID” and get the referral. In this case, it was good to have a paper trail, but doctors still have a duty to refer even if the request is verbal.