Canada is knee deep in the discussion about how to implement medically assisted death for terminally ill, competent adults who choose to end their life because of self-defined, intractable suffering. The ensuing debate is complex and heavily nuanced. One significant concern voiced by people with disabilities is that many in our society conflate disability with suffering, and as a result, people with disabilities have deep concerns that disability will become an appropriate criteria for requesting medically assisted death. This is a legitimate concern and one I may take up at another time – but not today.
I will admit that I see the ensuing conversation a bit differently. As a rule I think open conversations about life and death can have unexpected positive results and I am hoping that the ongoing debate about death and suffering might actually encourage people to think more intentionally about life and living.
Living with a medically fragile child means that I have witnessed intractable, poorly managed suffering much more than I would have liked. I have first-hand experience with how ill-equipped at times our medical community can be with handling such suffering. There was about a year of Matthew’s life where I genuinely questioned whether we were doing the right thing by intervening to the extent we did. During some of my darkest moments I wondered if his death would be a blessing. It is brutally difficult to watch someone you love suffer, particularly when that person cannot articulate or influence their suffering in any way. As a cognitively impaired, non-verbal child Matthew simply had to endure his suffering. It was awful.
I have often stated that while I worry about Matthew’s death, bearing witness to his ongoing suffering terrifies me a whole lot more. One result of my journey with Matthew is that I find I am sympathetic to the assisted death conversation and a person’s right to choose. I can understand how someone might wish to place limits on their suffering, however personally defined, and I can appreciate that by establishing such boundaries the individual might feel more able to live fully amid life limiting situations. Because as far as I see it, living fully and how that is personally defined is an important part of conversations about death.
As the parent of a medically fragile child I have spent much of the last 17 years knowing the shadow of death lurks in the immediate vicinity. It is a pretty scary feeling. But living with full awareness of Matthew’s medically fragile status means that I am much more intentional about the life I create for Matthew, and by extension, I am also much more intentional about decisions regarding my own life. As people receiving palliative care will remind us, when you live in the presence of death the sometimes-surprising result is that you may live life with much greater abandon. Being aware of the finitude of our lives can actually be a great gift because it means we are less likely to take that life for granted.
In my opinion, this whole assisted death conversation provides an excellent opportunity for all of us to spend time clarifying what “quality of life” looks like for each of us. The current conversation about death and suffering, while frightening, can demand that we fully consider what living life to the fullest looks like. As Matthew’s mother I have learned that honest conversations about death, illness, and suffering (the kind I have with some regularity) have the unexpected result of encouraging me to live more fully and in the moment. I am blessed because I live with the constant awareness of the profound gift of life.
The medical community predicts that Matthew will die before me. I say this knowing full well that people outlive their life expectancies all the time, and for my son’s sake I hope with every fibre of my being that he does. However living in the shadow of death means that while I will still no doubt grieve my son with abandon if he predeceases me, I will also be able to say good-bye to him knowing that I did everything within my power to ensure that his time here on this earth was lived to the fullest.
So perhaps as we approach this all-too-uncomfortable conversation about suffering and death we might wish to remind ourselves that such chats, while difficult, can have unanticipated benefits in terms of living.