The last goodbye
Although Lisa Bell supported her mother’s decision to die with medical assistance, the grief has been a struggle
Lisa Bell remembers the moment her mom Susan told her she was choosing a medically assisted death.
“I was scared. I didn’t know much about it. I didn’t know anyone who had gone through it,” says Bell. “But I understood and supported her decision. I started researching to learn more about it.”
A few months before, Susan, who was 68, had been diagnosed with amyotrophic lateral sclerosis (ALS), where the brain loses the ability to communicate with the muscles. Within months, she could not eat, swallow or speak, and only had use of her right hand. She typed on her iPad or wrote in a notebook to communicate.
On July 31, 2017, just more than a year after her diagnosis, Susan lay in her hospital bed as her husband Bob and Lisa stroked her arm and kissed her. With Elvis Presley singing through a CD player, they told her they loved her and it was OK to go to sleep.
When it was time, her doctor came in and gave her medication through injection. In the hours and days after, Lisa only remembers crying. That first night, she could not talk or move. The following weeks are a blur and she had frequent flashbacks to her mom’s final moments.
“I kept seeing the moment they put the needle in. I saw my mom’s eyes go really wide. She looked frightened. I kept wondering what she was thinking and I wished she could speak to us.”
It is only now that Lisa says the warmer memories of her mom are coming back.
“At first it was all the sadness of the past year and a half, of her illness. Now it’s a little more comfortable when I think of her. I can think about her and smile instead.”
And Susan gave her so many reasons to smile.
“She was so sweet. She was always happy and loved Elvis and dancing and singing,” said Lisa, who is a graphic designer in Hamilton. “My mom was so supportive and proud of everything I did. We travelled together and still had sleepovers. She was my cheerleader and I would tell her everything. It is hard not having that anymore.”
The night before Susan was to die, they had one last sleepover. Lisa stayed at the hospital, Grey Bruce Health Services-Wiarton, and they hung out and watched Elvis Presley movies. Lisa had written her mom a letter and told her everything she wanted to say. That night, her mom wrote her loving notes for her to keep.
After her mom died, Lisa stayed off work for two months. Her therapist, Brigitte Diggins, suggested she ease back into work and they put a plan in place. Lisa started back two days a week, working up to full-time, and found that getting back into routine has helped in her healing.
In addition to counselling, Lisa says exercising and going for walks have helped and she still writes messages for her mom about things she wants to tell her.
Doing something creative has also been therapeutic. Lisa wrote a poem about her mom and is illustrating it to turn it into a children’s book.
“Grief can make you feel crazy. But talking about it helps, and knowing we all experience grief in different ways and that it is normal to feel this way,” she says.
Lisa is grateful she could help her mom through her decision.
“One good thing about knowing it’s happening, is that you’re there,” said Lisa. “I really appreciated being able to be there and to comfort her. But you can’t prepare yourself. When you are in that room and it is happening, it is traumatizing.
“But we were going to lose her and she would have had to suffer so much more. I am OK with taking some of that away from her.”
According to the Ontario HIV Treatment Network, many studies show family and friends of patients who requested medical assistance in dying (MAID) had less traumatic grief symptoms compared to family and friends of patients who died of natural causes. However, other studies have shown that post-traumatic stress disorder and depression are more common among family members or friends witnessing MAID.
Andrea Frolic, director, Office of Clinical and Organizational Ethics and co-director of the MAID program at Hamilton Health Sciences, says many things affect a person’s grief, including the individual’s resilience, quality of the relationship, social support and past experience with death.
“It is difficult to predict or generalize around people’s experiences with dying. But we have found that some things are protective,” said Frolic. “There may be less complicated grieving with MAID because it is clear it was the patient’s choice. With other types of deaths, like in the ICU, a loved one may have to make a care decision and can’t discuss it with the patient. They may feel guilt and live with the question of whether they made the right choice.”
Frolic adds that in planning the death, the family can gather a community, which means they are not alone. Family members also get the chance to tell their loved one everything they want to say and resolve conflicts, which makes grieving less complicated.
“In some cases, family members may have difficulty with their loved one’s choice. So there is some distress with supporting it, but it is the same distress as when a loved one decides to stop chemotherapy or to go off dialysis,” says Frolic. “Any decision to shorten a life, family members often struggle with.”
Diggins, a registered psychotherapist in Hamilton, says family members may find comfort in supporting their loved one’s wishes and helping to stop their suffering.
“No one would sign up for this. You are asked to engage in a deliberate, conscious process that is counterintuitive to what you would want to do. Supporting that loved one to get to this moment and then witnessing it, trauma is naturally associated with that,” she said. “But with MAID, the family has the chance to say goodbye and, in theory, to be prepared. As much as you can’t prepare for when it actually happens, you have had some control.”