MAID: What I wish I knew
Personal Stories | July 1, 2022 | Colleen Ellis
As part of our on-going efforts to educate and support people across Canada about their end-of-life choice and care, we are developing new resources to help you navigate this path. Through consultation with MAID assessors, we have created a Medical Assistance In Dying Assessment Guide that provides information about what to expect during the MAID assessment process. You can download it here for free.
Colleen’s blog post highlights some things to know and consider if you are supporting someone through the assisted dying process. Her experience has inspired the development of another resource that we anticipate sharing before the end of the year.
Dad loved being with his family. It’s what brought him joy. During his second MAID assessment, I stood next to Dad’s bed in palliative care, listening to him answer the doctor’s questions. He explained that the pain from his pancreatic cancer was bigger than the joy in his life. His body hurt so much now that it outweighed the happiness that his wife, kids, and grandkids gave him.
Before his cancer diagnosis, I never heard him complain when he experienced discomfort or hurt. And yet, for most of his life, he had chronic foot and leg pain. Admitting he was suffering meant the cancer was excruciating. Instead of complaining, he usually focused on the positive, even in the most challenging situations, and he always saw the good in others.
Dad was known for spending a lot of time connecting with the people around him and helping family and friends. To some, he was known as Neil. People remember him as an electrician, a businessman, a sailor, and a builder of contraptions. Some call his most bizarre inventions Neilisms (a creative Dad-made device that works but isn’t built in a typical way and is confusing for others to operate). He kept us laughing. But after 83 healthy years, his quality of life was gone. The pancreatic cancer and the medication erased his ability to focus. Even reading or watching a movie was impossible. He no longer enjoyed any food or drink – not even a sip of water. The cancer was in control and Dad knew his pain would soon intensify.
MAID empowered him to get ahead of the worsening pain. I admired him for having the courage to make the choice to die on his own terms. Having the right to end his suffering was a gift. For some of us, MAID gave us an opportunity to thank Dad for bringing joy into our lives, and to be at his side during his final moments. I was grateful that he didn’t have to continue to live in agony, but the process was hard.
Preparing for a loved one to die is never easy, even when we know exactly when their death will happen, and even when we schedule it – two o’clock in the afternoon on Monday, July 26.
Dad casually chose that date and time like he was booking himself a haircut. “I think I can clear my schedule to make it happen Monday,” he joked with the doctor. We might not be able to fully prepare ourselves for a loved one’s death, but some knowledge, support, and perspective can help us manage better.
Dad was a helper, so I hope my experiences with his death will help others prepare for MAID
The process can happen quickly
Sometime in the week after the first assessment, a doctor called Mum to explain that he was scheduling the second assessment the following morning. Two days before, Dad had moved from home to palliative care. The doctor explained that if he passed his second assessment, and if Dad requested MAID that same day, he would be obligated to fulfill his wishes. That meant we potentially had only one night left with Dad.
Loved ones need support
Mum was in shock, and I was confused. Just two days before, he was with Mum in their home where they spent over 50 years together making a home and raising four kids. Now, he was about to leave us. Each step of the assessment was happening fast. I was desperate to step on the brake. But I wasn’t in control.
Considerations and planning
I had read about the requirements and the assessment for MAID, and I had understood how his death might play out, but my emotions kept me from remembering. Because of that, I couldn’t fully understand what was happening. Early the next morning, I sat on the edge of Dad’s hospital bed and told him that one of his sons – my brother – wasn’t in town yet and he needed to say goodbye. And Mum wanted a couple more days with him. He understood and agreed that it wasn’t a good day for dying. Instead, he scheduled his death for the following Monday – just two days away. Still, the process felt like turbo speed, but we now had some time to say farewell.
Ask for support early
The doctor’s relationship was with Dad, and not with our family. Although I was able to ask the doctor some questions immediately after the second assessment, I learned that we needed to find our own support. We were fortunate enough to have out-of-town relatives surprise us with a visit the day before Dad’s death, and they stayed for a couple of days. Their support was invaluable.
Now I realize that it would have been helpful to have a friend or relative involved in our early conversations about MAID, and to learn with us so they could offer support, reminders, and hugs. I think Dad appreciated his brief, confidential relationship with the doctor. Maybe he liked that he listened to him, empathized, and gave him the power he needed to stop his pain. But I think Mum, my siblings, and I needed our own person, too, to help us understand.
Talk about final wishes
I should have talked sooner to Dad about his wishes for his final moments. On the day of his death, I waited in his hospice room with my brothers, their wives, my husband, and Mum. It wasn’t until that morning when we thought to ask him if there was anything he wanted, or didn’t want, in the moments immediately before dying. Dad’s only request was for quiet. That was a reminder of how much he hurt. Mum decided she wanted vases and pots of flowers in the room. We placed family photos on the night table. In the morning the grandkids had their last visits with their grandpa. What we did on his last day was impromptu, and without fuss. Dad was a selfless man, so he might not have wanted anything more. But others suggested playing music, wheeling his hospital bed outside so he could be next to the hydrangeas on the patio, and even popping some champagne to celebrate him, his life, and his bravery – all beautiful ideas that would have taken some planning.
It’s okay to ask questions
What would it be like to watch Dad die? I had never watched someone die before. How long would it take? What will I see? What will he look like after his heart stops? How long should we stay in the room after he dies? Immediately after he completed the second assessment, I walked down the hallway with the doctor, looking for answers. He spoke to me, reassuring me that his death would be peaceful and there’d be no hurry for us to leave after he passed. He answered every question I had while making me feel like they were the best questions he ever heard. It turned out okay. His words and his kindness helped me to relax so I could focus on how I would spend my last visits with Dad, and what Mum needed, too.
In one sense, it was just another day. When the doctor arrived at hospice on the day of his death, I introduced him to my siblings. He spoke in a soft voice with Dad to make sure he had not changed his mind. The doctor and the nurse set up the IV in the corner of the palliative care room. As they prepared, we moved closer to Dad. We sat at the foot of his bed, on the sides, and stood behind him. We talked and we laughed a little. Just moments before he died, Dad brushed his teeth. Earlier that day he showered. He had pictures taken with his family. We told jokes. He smiled. He gave instructions on how to winterize the sprinkler system in the backyard – likely another Neilism, so he knew his directions might come in handy for us. This heartbreaking day also felt like the most ordinary day. And just ten minutes after the two o’clock MAID appointment that he had scheduled, Dad was in an eternal sleep.
You may experience stigma and unexpected reactions from others
I never thought about stigma. After we started notifying others about Dad’s death, stigma occasionally showed up. I began choosing who to tell about MAID. During his second assessment, Dad expressed to me that he was a bit worried about what some people would think about his decision to die. “Some will think I’m a quitter,” he said. I assured him that didn’t matter, and that most people would be proud of him, and they would thank him for educating them about MAID. And that happened. Friends and family were curious and later shared with us that they are grateful that they, too, might have the same choice one day. Knowing that stigma might show itself can help us think about how we might talk to people about our loved one’s death.
MAID is a gift but losing a loved one is still sad
I’m grateful to the medical professionals, Dying With Dignity Canada, family, and friends for empowering Dad, and making MAID easier for me and my family. Dad’s death has left a big hole in our lives, but the void he left us is a reminder of his love and the power we can give to each other.