{"id":982,"date":"2025-07-21T14:53:22","date_gmt":"2025-07-21T14:53:22","guid":{"rendered":"https:\/\/www.forevermissed.com\/blog\/?p=982"},"modified":"2025-07-21T14:53:22","modified_gmt":"2025-07-21T14:53:22","slug":"rethinking-the-language-of-suffering-in-end-of-life-choices","status":"publish","type":"post","link":"https:\/\/www.forevermissed.com\/blog\/rethinking-the-language-of-suffering-in-end-of-life-choices\/","title":{"rendered":"Rethinking the language of suffering in end-of-life choices"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">This blog is not about MAiD itself, but rather about the language we use to describe \u2018end of life\u2019 states. In Canadian MAiD, a person must have a terminal condition or be experiencing \u2018intolerable suffering\u2019 to qualify. The official terminology now is \u201cgrievous and irremediable medical condition.\u201d However,&nbsp;<em>grievous<\/em>&nbsp;means \u201ccharacterized by severe pain, suffering, or sorrow\u201d \u2014 so&nbsp;<em>suffering<\/em>&nbsp;essentially means the same as \u2018intolerable.\u2019<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">The Limitations of &#8220;Suffering&#8221;<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">My issue is with the word&nbsp;<em>suffering<\/em>, which remains commonly used to describe \u2018end of life\u2019 conditions. Since those with purely mental or psychological difficulties do not yet qualify for MAiD, one must presume that&nbsp;<em>suffering<\/em>&nbsp;refers specifically to physical suffering in MAiD assessments.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">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 \u2018intolerable\u2019 physical agony. Instead, they face something less tangible but equally impactful \u2014 the psychological and existential challenges of prolonged life.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For those like my 90-year-old mother, the issue was not physical pain but what has been described as \u201cbrain and body frailty.\u201d Her physical and cognitive functions were limited, but her emotional and psychological distress came from the loss of what she considered&nbsp;<em>quality of life<\/em>. She wasn\u2019t 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 \u2014 but to date, that alone is not sufficient to qualify for MAiD.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This distinction is crucial, yet our current language fails to capture it. For many,&nbsp;<em>suffering<\/em>&nbsp;implies torment or misery. But what about those who simply feel tired of living \u2014 who wake up each day, as one friend in their 90s told me, asking: \u201cWhat the h*** am I doing still here?\u201d<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Expanding the Vocabulary<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">To have meaningful discussions about end-of-life choices, we need a vocabulary that reflects these broader realities. While&nbsp;<em>suffering<\/em>&nbsp;may resonate for some, it doesn\u2019t fully represent the experience of everyone who wishes to hasten their death.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">One alternative could be&nbsp;<em>existential distress<\/em>, 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.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Another option is to focus on phrases like&nbsp;<em>loss of autonomy<\/em>&nbsp;or&nbsp;<em>decline in quality of life<\/em>. 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 \u2014 especially dementia.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The challenge with all of these terms is that they require multiple words \u2014 which feels more formal, and therefore is less likely to enter everyday speech.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Why Words Matter<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The language we use shapes how we understand end-of-life options \u2014 and how society perceives them. If we restrict the conversation to&nbsp;<em>suffering<\/em>, we risk excluding people whose struggles with living are just as valid, even if not based on physical pain.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">By expanding our vocabulary, we can better honor the diverse realities of aging and dying \u2014 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 \u2014 not because of&nbsp;<em>unbearable suffering<\/em>, but because of a deeply personal sense that one\u2019s time has come.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">So \u2014 what word could better describe the experiences outlined above, if not&nbsp;<em>suffering<\/em>? Or should we broaden the meaning of&nbsp;<em>suffering<\/em>&nbsp;itself \u2014 perhaps returning to its mid-14th-century definition:<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><em>\u201cThe patient\u2019s enduring of pain, inconvenience, loss, etc.\u201d<\/em>&nbsp;(my bolding)<\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">If you have suggestions, please send them to\u00a0<strong><a>contact@cindea.ca<\/a><\/strong>. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>The author<\/strong> Pashta MaryMoon, executive director of\u00a0<em>CINDEA<\/em>\u00a0(<a href=\"https:\/\/www.cindea.ca\/\">https:\/\/www.cindea.ca\/<\/a>) and elder teacher of\u00a0<em>By My Own Heart and Hand<\/em>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>This blog is not about MAiD itself, but rather about the language we use to describe \u2018end of life\u2019 states. In Canadian MAiD, a person must have a terminal condition&#8230;<\/p>\n","protected":false},"author":13,"featured_media":611,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[8,9],"class_list":["post-982","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-end-of-life","tag-coping-with-grief","tag-online-memorial"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rethinking the language of suffering in end-of-life choices - ForeverMissed Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.forevermissed.com\/blog\/rethinking-the-language-of-suffering-in-end-of-life-choices\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rethinking the language of suffering in end-of-life choices - ForeverMissed Blog\" \/>\n<meta property=\"og:description\" content=\"This blog is not about MAiD itself, but rather about the language we use to describe \u2018end of life\u2019 states. 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Journeying Beyond is hir personal service (beyonds.ca) for deathing support. ZIe offers and teaches Bedside Singing \u2014 yet another element of deathing support, although zie has also used it with birthing mothers; and is also a singer\/songwriter. \u00a0 Zie has also been a birth coach. 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