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Home
Testimonials

Blog & Archived
Search this Site
Contact us


Pan-Death Movement
Definitions, Values,
DJ's Rights, 7 Stages,
Alternative Providers,
CINDEA
Recognition,
Why use Services?

Death Midwifery
Expectations,
Web of Facets,
Advantages of a DM,
CINDEA
Recognition,
Philosophy in Practice

Advance Care
Planning
Final Affairs,
Advance Directives & Representation/Proxy,
Dementia

Post-Death Care and Home Funerals
History,
Why Consider It,
Basics, Videos,
Physical Care,

6 Shroud Patterns,
DJ's Remains

Greening Death
Various forms of
ecological disposition

Training
By My Own Heart & Hand
home funerals, Greening Death, Children, and Deathing Rites

DWENA/Deathcare Practitioners
Directory
National & Provincial

Resources &
Directory
in
Canada —
Pre-Death

National & Provincial

Resources &
Directory in
Canada —
Post-Death

National & Provincial

Resources
Elsewhere

U.S.A., U.K., etc.

Resources
Books & Movies

for Adults & Children



Organization
and Donations

Site Map

Archives
Articles & Updates


 

 

twisted rainbow

Rethinking the Language of Suffering
in End-of-Life Choices

This blog is not about MAiD (Medical Aid in Dying) itself, but rather the issue of the wording we use for 'end of life' states.   In Canadian MAiD, one must have a terminal condition or 'intolerable suffering' in order to qualify.   Actually, the language now is "Grievous and irremediable medical condition"; but 'grievous' means "characterized by severe pain, suffering, or sorrow" so pretty much the same as 'intolerable'.

The Limitations of "Suffering"

My issue is with the word ‘suffering’ which is still in common usage for ‘end of life’ conditions.  Since those with purely mental or psychological difficulties don’t qualify for MAiD as yet, one has to presume that ‘suffering’ refers to physical suffering in MAiD assessments. 

This usage of the word makes sense in a historical context, when medical options for managing pain were far more limited.   However, advancements in palliative care mean that many people, nearing the end of life, are not in constant or ‘intolerable’ physical agony.   Instead, they experience something less tangible but equally impacting their lives: the psychological and existential challenges of prolonged life.

For those like my 90-year-old mother, the issue was not pain, but what has been labeled “brain and body frailty.”   Her physical and cognitive functionality was limited, but her emotional and psychological distress stemmed from a loss of what she considered “quality of life.”   She was not suffering so much in the traditional sense; but the exhaustion, monotony, and perceived meaninglessness of her days weigh heavily on her.  That could be considered a psychological suffering but to date, that is not sufficient in itself to qualify for MAiD. 

This distinction is crucial, yet our current language doesn’t adequately 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 conversations about end-of-life decisions, we need language that reflects these broader realities.   While “suffering” may resonate for some, it does not encompass the experiences of all who wish to hasten their deaths.

One alternative might be “existential distress,” a term already used in some medical and philosophical contexts to describe feelings of meaninglessness, futility, or profound emotional exhaustion.   This phrase acknowledges the psychological and emotional dimensions of end-of-life experiences without conflating them with physical suffering.

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

The problem with all of these options is that they require a multiple-word phrase which is more formal; and as such, will not get used in common-speak .


Why Words Matter

The words we use shape how we think about end-of-life options, and how society views those choices.  If we limit the conversation to “suffering,” we risk excluding individuals whose struggles are no less valid simply because they are not based on physical pain.

Expanding our vocabulary allows us to honor the diverse realities of aging and dying and notably the reality of extended aging that didn’t exist for most people before the 20th century.   It creates space for conversations about autonomy, dignity, and the right to decide when life is no longer worth living — not because of unbearable suffering, but because of a deeply personal sense that one’s time has come.

So what word can adequately describe the meanings above, other than ‘suffering’?   Or do we need to change the meaning of suffering — notably to its mid-14th century meaning “the patient’s enduring of pain, inconvenience, loss, etc.;” (my bolding).   If you have suggestions, please send them to contact@cindea.ca.  Blessings

June 10,2025 Pashta MaryMoon
By My Own Heart and Hand teacher



Common-speak is the non-formal language that is used in everyday conversation.

 





Last updated June 2023    © CINDEA  (To use more than a brief extract, please contact us for permission.)