The MAID Miracle – Part 2
Personal Stories | August 19, 2022 | Shauna Collins
My name is Shauna. My mom Janice chose to die with dignity through medical assistance in dying (MAID) in December 2020 at the age of 64. My mom and our family had a 15-year journey with breast cancer. The MAID program in Calgary gave her the choice to end her pain and suffering and have a peaceful death. My mom was so brave, and never deserved to experience all that she did. I told her I would continue to share her story, as she did throughout her journey.
Read Part 1 of Shauna’s story here.
The MAID process
My mom and I learned about MAID in 2016 when her dad, at 96, was terminally ill. He suffered from chronic Leukemia, prostate and breast cancer. He was in hospital for a few months before being transferred to long term care, which separated him from his wife of 60+ years. It was very difficult for us as a family and his wife to watch him suffer at the end of his life. MAID was recently approved in Canada, but he was not a candidate due to his fluctuating cognition. Ever since then, Mom was at ease that she could choose to die with dignity on her own terms.
By 2020, even minimal activity caused 9 out of 10 pain. With so many bone metastases, laying down made her freeze. It was difficult to breathe with dozens of rib fractures. The pain throughout her body was sharp, burning, and radiated. It still makes me cringe to think about.
The COVID pandemic made it difficult to get adequate medical care to allow my mom to be comfortable. Her pain was so severe that she was admitted to the Intensive Palliative Care Unit at Foothills Hospital. Due to COVID, we were not allowed to visit; my mom felt like she was trapped in jail. The palliative care team would speak with us briefly on the phone, but it was impersonal. While admitted, they tried to give her the strongest narcotic available – sufentanil (10X stronger than fentanyl) – usually only used in the operating room. Even this amount of pain medication gave her minimal relief. The only other options were psychedelics or an epidural block. This would ease her pain but leave her bed bound and paralyzed. There was no way my mom wanted to live the end of her life in bed, full of pain. We had to “bail” her out of the hospital.
As a family, we decided to take care of her at home. Palliative homecare was less than helpful. My dad was her main caregiver. He would help her in the mornings and spend quality time together. I would come in the afternoons to help with hygiene and getting dressed. My brother would usually come for the evening and dinner, and my sister would help her get ready for bed. My dad had medical alarms and call bells, so my mom felt at ease during the night. With COVID the doctors kept changing and people didn’t want to come into homes.
The MAID process began with an inquiry and an email of request. She was then contacted by the care coordination team and was set up with two virtual physician assessments, due to COVID. She was approved, able to submit a final application, and told she could set a date when she was ready. It took my dad several days to submit her request because he had to go to Staples to fax it. With tear filled eyes he said, “It was the hardest thing I’ve ever done.” My mom was told by the palliative care team that with the amount of pain and medications she required her body would eventually go into a state of exhaustion and her cognition would decompensate. She would not qualify for MAID if her cognition changed.
Mom wanted to wait until the new year because she loved the holidays, but within days the pain, agony and discomfort were overwhelming. With all the medications her brain was foggy and body exhausted. She wanted to die with dignity and chose a date. We had about five days’ notice, which felt like a nightmare. Luckily, I mentioned MAID to my 93-year-old grandma a few weeks prior and she was able to support my mom with the process.
The MAID provision
Monday December 14, 2020, was the date that my mom chose. It was difficult to stay strong and keep it together not knowing what to do, or what to say, so we were just there. Mom had no energy, and everything caused pain and discomfort. It is hard to describe, but it was like she had already checked out. I watched her eat snacks and do small tasks with such difficulty. With my sister beside me, I finally found the courage to ask how she was feeling, was she scared or worried? She paused for a long time, unable to put her feelings into words, then she said, “I can’t describe how I feel, I’m a little scared but mostly feel a sense of relief.” These were difficult words to hear; my sister and I sat in silence.
I stayed in the house for her last night. My sister and I were putting her to bed, she was in agony changing into pajamas and brushing her teeth, she said to us, “I know it’s hard girls, don’t be sad, but I’m so glad it’s the last night.” We read her an angel meditation called “The staircase to heaven” as she fell asleep.
We were able to get an exception from the Health Minister to be present when my mom passed. Mom held my dog Lilly by her side surrounded by my dad, grandma, uncle, brother and sister. It was the first experience with death for most of my family members and we all coped a little differently. After she died, Lilly and I lay with her and listened to her funeral playlist until the funeral home came to pick her body up. I looked through pictures and reminisced about the amazing life she lived. It is amazing how animals can pick up on emotions and provide comfort; at least I could grieve with my dog since the law prevented any social gatherings.
The pandemic made the loss of my mother even more cruel and heartbreaking than it already was. The guilt that we could not make her comfortable haunts us each day. My poor dad was alone, in the house where she passed, without any support. We could only have ten people at the funeral, but we shared the recording of it afterwards with hundreds of people she impacted. My mom was cremated, and my dad feels comfort having her urn in the home. After 17 years living with cancer my mom can now rest in peace. I am so grateful for the quality time we had in the last few months; I cannot explain the love I have for this amazing woman. We remember my mom for her kindness, strength, courage, love and spirituality. The choice to die with dignity was with no fear; she lived life to the fullest, on her own terms.
I hope that sharing my mom’s story and experience with MAID can help others feel at peace and ease. As a nurse, I have experienced death many times, most in a hospital setting. I cannot explain how grateful I am that the MAID process was so peaceful. I didn’t witness her struggling, I only saw relief. I’m very grateful she was able to be at home, in comfort, and surrounded by family.