Excuse me for living: MAiD, autonomy and feeling like a burden

If you were an adolescent in the 1990s, there’s a good chance that, at least once, you gave the sassy retort, “Well, excuse me for living!”

This faux apology was typically proffered after being on the receiving end of a complaint or criticism, and it was meant to point out the minor nature of the transgression, or one’s right, as we might say today, to “take up space.” The basic message was that whatever had transpired was a natural side effect of living in a community; we inconvenience each other sometimes to a greater or lesser extent.

How many of us 1990s teens will, at the end of our life, say a version of “excuse me for living” with absolute sincerity? Forgive me for living. Forgive me for continuing to live.

As a clinical ethicist who meets with patients requesting assisted dying, I hear about the social factors undergirding requests for MAiD. Patients who, incidentally, most likely would be found eligible based on their clinical circumstances, share not infrequently that they feel they are a burden. It takes a lot of care to keep them alive. Their family members are busy; visiting is a chore for them. Everyone else should be allowed to get on with their own life.

With the option of MAiD squarely on the table for so many, is staying alive becoming a path that requires justification? Has it become selfish? Please excuse me for needing care; for taking up a bed; for the burden of time spent visiting me or the burden of guilt for not. Please excuse me for living.

Creating limits around MAiD based on a taxonomy of suffering is doomed to fail.

Those familiar with P.D. James’ The Children of Men might sense echoes of her 1992 dystopia. Is it time for the Quietus? On the other hand, those most enthusiastic about expanding MAiD eligibility likely will consider distress over the perceived or actual burden upon others to be part and parcel of the patient’s intolerable psychological suffering. If they satisfy eligibility criteria, pursuing MAiD is their choice, and allowing it is what it means to respect their autonomy.

But sustained respect for autonomy can only flourish within a society in which we value each other inherently, and in which we show it – regardless of the work it takes to do so, regardless of what a person can or cannot contribute, or whether their presence is inconvenient. Demonstrating to people how we can help to take care of them and support their family caregivers, through increased home care, for example, transforms a potential burden into a met need and is a concrete articulation of each person’s worth.

Creating the conditions under which people are entitled, and feel entitled, to choose their own path involves demonstrating, through our actions, our laws and our policies, that each person is worth a great deal – of care, of effort, of love – by virtue of being alive.

Creating limits around MAiD based on a taxonomy of suffering is doomed to fail. Who is anyone to say that certain types of suffering are worse than others? That suffering occasioned by physical illness is worse than that produced by mental illness? That suffering occasioned by illness in general is worse than the suffering produced by loneliness? Or poverty? Or grief? Physical disease can lay no exclusive claim on suffering.

Rather, limits to MAiD should come from asking hard questions about how we want our society to be, and to feel. Among those questions is this one: What do we do to our cherished autonomy by providing MAiD to those who feel they are too much of a burden?

*Sincere thanks to Frank Curry who, through numerous conversations, has helped me achieve a richer understanding of autonomy.