Rethinking the language of suffering in end-of-life choices

This blog is not about MAiD itself, but rather about the language we use to describe ‘end of life’ states. In Canadian MAiD, a person must have a terminal condition or be experiencing ‘intolerable suffering’ to qualify. The official terminology now is “grievous and irremediable medical condition.” However, grievous means “characterized by severe pain, suffering, or sorrow” — so suffering essentially means the same as ‘intolerable.’

The Limitations of “Suffering”

My issue is with the word suffering, which remains commonly used to describe ‘end of life’ conditions. Since those with purely mental or psychological difficulties do not yet qualify for MAiD, one must presume that suffering refers specifically to physical suffering in MAiD assessments.

Historically, this usage made sense, as medical options for managing pain were limited. But advancements in palliative care now mean that many people nearing the end of life are not in constant or ‘intolerable’ physical agony. Instead, they face something less tangible but equally impactful — the psychological and existential challenges of prolonged life.

For those like my 90-year-old mother, the issue was not physical pain but what has been described as “brain and body frailty.” Her physical and cognitive functions were limited, but her emotional and psychological distress came from the loss of what she considered quality of life. She wasn’t suffering in the traditional sense, but the exhaustion, monotony, and perceived meaninglessness of her days weighed heavily on her. That might be considered psychological suffering — but to date, that alone is not sufficient to qualify for MAiD.

This distinction is crucial, yet our current language fails to capture it. For many, suffering implies torment or misery. But what about those who simply feel tired of living — who wake up each day, as one friend in their 90s told me, asking: “What the h*** am I doing still here?”

Expanding the Vocabulary

To have meaningful discussions about end-of-life choices, we need a vocabulary that reflects these broader realities. While suffering may resonate for some, it doesn’t fully represent the experience of everyone who wishes to hasten their death.

One alternative could be existential distress, a term already used in some medical and philosophical settings to describe feelings of meaninglessness, futility, or profound emotional exhaustion. It recognizes the emotional and psychological dimensions of end-of-life experiences without equating them with physical pain.

Another option is to focus on phrases like loss of autonomy or decline in quality of life. These concepts acknowledge that what many people fear most is not pain, but the loss of control and identity that can accompany advanced age or severe illness — especially dementia.

The challenge with all of these terms is that they require multiple words — which feels more formal, and therefore is less likely to enter everyday speech.

Why Words Matter

The language we use shapes how we understand end-of-life options — and how society perceives them. If we restrict the conversation to suffering, we risk excluding people whose struggles with living are just as valid, even if not based on physical pain.

By expanding our vocabulary, we can better honor the diverse realities of aging and dying — especially the extended aging that was rare before the 20th century. It opens space for thoughtful conversations about autonomy, dignity, and the right to decide when life is no longer meaningful — not because of unbearable suffering, but because of a deeply personal sense that one’s time has come.

So — what word could better describe the experiences outlined above, if not suffering? Or should we broaden the meaning of suffering itself — perhaps returning to its mid-14th-century definition:

“The patient’s enduring of pain, inconvenience, loss, etc.” (my bolding)

If you have suggestions, please send them to contact@cindea.ca.

The author Pashta MaryMoon, executive director of CINDEA (https://www.cindea.ca/) and elder teacher of By My Own Heart and Hand.