{"id":27864,"date":"2026-06-02T14:06:46","date_gmt":"2026-06-02T18:06:46","guid":{"rendered":"https:\/\/observatoireprocheaidance.ca\/?page_id=27864"},"modified":"2026-10-23T10:02:05","modified_gmt":"2026-10-23T14:02:05","slug":"trajectory-of-palliative-and-end-of-life-caregiver","status":"publish","type":"page","link":"https:\/\/observatoireprocheaidance.ca\/en\/trajectory-of-palliative-and-end-of-life-caregiver\/","title":{"rendered":"Trajectory of palliative and end-of-life caregivers"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_0 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h1 style=\"text-align: center; opacity: 0; margin-top: 0; margin-bottom: 0; padding-top: 0; padding-bottom: 0;\">Trajectory of palliative and end-of-life caregivers<\/h1>\n\n\t\t\t\t<p class=\"rs-p-wp-fix\"><\/p>\n\t\t\t\t<sr7-module data-alias=\"spfv-en\" data-id=\"27\" id=\"SR7_27_1\" class=\"rs-ov-hidden\" data-version=\"6.8.1\">\n\t\t\t\t\t<sr7-adjuster><\/sr7-adjuster>\n\t\t\t\t\t<sr7-content>\n\t\t\t\t\t\t<sr7-slide id=\"SR7_27_1-51\" data-key=\"51\">\n\t\t\t\t\t\t<\/sr7-slide>\n\t\t\t\t\t\t<sr7-slide id=\"SR7_27_1-52\" data-key=\"52\">\n\t\t\t\t\t\t<\/sr7-slide>\n\t\t\t\t\t<\/sr7-content>\n\t\t\t\t\t<image_lists style=\"display:none\">\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/10\/trajectoire_SPFV_EN_fond-2.png\" data-libid=\"27980\" data-lib=\"medialibrary\" alt=\"Trajectory of palliative and end-of-life caregivers\" 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(max-width: 480px) 480px, (min-width: 481px) and (max-width: 980px) 980px, (min-width: 981px) and (max-width: 1280px) 1280px, (min-width: 1281px) 1727px, 100vw\" class=\"wp-image-14759\" \/><\/span><\/a><\/div><\/div><div class=\"et_pb_column_5 et_pb_column et_pb_column_1_4 et-last-child et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><\/div><div class=\"et_pb_row_3 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_6 et_pb_column et_pb_column_1_3 et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><div class=\"et_pb_column_7 et_pb_column et_pb_column_1_3 et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_3 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><em>Last updated: October 2026<\/em><\/p>\n<p style=\"text-align: center;\">In collaboration with : <\/p>\n<\/div><\/div><\/div><div class=\"et_pb_column_8 et_pb_column et_pb_column_1_3 et-last-child et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><\/div><div class=\"et_pb_row_4 et_pb_row et_pb_row_5col et_block_row et_block_row_5col preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_9 et_pb_column et_pb_column_1_5 et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><div class=\"et_pb_column_10 et_pb_column et_pb_column_1_5 et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><div class=\"et_pb_column_11 et_pb_column et_pb_column_1_5 et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_image_1 et_pb_image et_pb_module et_block_module preset--group--divi-image--divi-transition--default\"><a href=\"https:\/\/procheaidance.quebec\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/PA_LogoSlogan_couleur-1.jpg\" width=\"1003\" height=\"686\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/PA_LogoSlogan_couleur-1.jpg 1003w\" sizes=\"(max-width: 1003px) 100vw, 1003px\" class=\"wp-image-27910\" alt=\"Proche aidance Qu\u00e9bec\" title=\"PA_LogoSlogan_couleur (1)\" \/><\/span><\/a><\/div><\/div><div class=\"et_pb_column_12 et_pb_column et_pb_column_1_5 et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><div class=\"et_pb_column_13 et_pb_column et_pb_column_1_5 et-last-child et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div><\/div><div class=\"et_pb_row_5 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_14 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_4 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module et_pb_text_align_center preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\">AUTHORS: Florence Potvin, Janie Dussault and Margaux Reiss<br \/>\nTRANSLATION: Lesley McCubbin<br \/>\nGRAPHIC DESIGN: Julie Bri\u00e8re<br \/>\nWEBSITE ANIMATIONS: <a href=\"https:\/\/www.zaa.cc\" target=\"_blank\" rel=\"noopener\">[ ZAA.CC ] Design web<\/a><\/p>\n<p style=\"text-align: center;\">ACKNOWLEDGEMENTS: Special thanks to the <span class='et-tooltip'>members of the Comit\u00e9 de proche aidance en contexte palliatif et fin de vie,<span class='et-tooltip-box'>\u00c9milie Allard, Marie-\u00c8ve Bouthillier, Patrick Durivage, Zelda Freitas, Genevi\u00e8ve Gravel, Manon Labine, Joanie Maclure, Alex Milyutin, H\u00e9l\u00e8ne Nadeau, Olivia Nguyen, Pam Orzeck, Marc Rochefort, Liza Tupper, Isabelle Van Pevenage, and Audrey Wyszinski.<br \/>\nWe also wish to thank Louise Lafontaine, F\u00e9lix Pageau, Ariane Plaisance, and Anne-Marie Savard for sharing their expertise.<span class='et-tooltip-arrow'><\/span><\/span><\/span> organized by the Observatoire qu\u00e9b\u00e9cois de la proche aidance and Proche aidance Qu\u00e9bec, and to the caregivers who took part in the <span class='et-tooltip'>Atelier de travail sur la proche aidance en contexte palliatif et de fin de vie.<span class='et-tooltip-box'>Natacha Bernier, Isabelle Faucher, Fran\u00e7ois Fournier, Julie Gauthier, Fanie Geslain, France Grondin, Anouk Laurin, Nancy L\u00e9pine, Carole Neveu, Nicole Neveu, Nathalie Parent, Carole Singher, Lise Tremblay<span class='et-tooltip-arrow'><\/span><\/span><\/span> Their insights, expertise and lived experiences significantly enriched the content of these publications.<\/p>\n<p>TO CITE THIS DOCUMENT: Quebec Observatory on Caregiving (2026). <em>Trajectory of palliative and end-of-life caregivers<\/em>. Sant\u00e9 Qu\u00e9bec \u2013 Centre-Ouest-de-l\u2019\u00cele-de-Montr\u00e9al \u2013 Universitaire.<\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_row_7 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_17 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_toggle_2 et_pb_toggle et_pb_toggle_item et_pb_toggle_close et_pb_module et_block_module list_spacing preset--group--divi-toggle--divi-transition--default\"><h2 class=\"et_pb_toggle_title\">References<\/h2><div class=\"et_pb_toggle_content clearfix\"><ol>\n<li>Institut de la statistique du Qu\u00e9bec. (2025). <em>Causes de d\u00e9c\u00e8s (liste d\u00e9taill\u00e9e) selon le sexe, Qu\u00e9bec, 2000\u20132025<\/em>. <a href=\"https:\/\/statistique.quebec.ca\/fr\/produit\/tableau\/3996#tri_es=10778&amp;tri_sexe=1\">https:\/\/statistique.quebec.ca\/fr\/produit\/tableau\/3996#tri_es=10778&amp;tri_sexe=1<\/a><\/li>\n<li>Broady, T. R. (2017). Carers\u2019 experiences of end-of-life care: A scoping review and application of personal construct psychology. <em>Australian Psychologist, 52<\/em>(5), 372\u2013380. <a href=\"https:\/\/doi.org\/10.1111\/ap.12278\">https:\/\/doi.org\/10.1111\/ap.12278<\/a><\/li>\n<li>Fortin, S. et Le Gall, J. (dir.). (2025). <em>Exp\u00e9riences de fin de vie dans un Montr\u00e9al pluriel<\/em>. Les Presses de l\u2019Universit\u00e9 de Montr\u00e9al. <a href=\"https:\/\/doi.org\/10.1515\/9782760651623\">https:\/\/doi.org\/10.1515\/9782760651623<\/a><\/li>\n<li>Isenberg, S. R., Killackey, T., Saunders, S., Scott, M., Ernecoff, N. C., Bush, S. H., Varenbut, J., Lovrics, E., Stern, M. A., Hsu, A. T., Bernstein, M., Zimmermann, C., Wentlandt, K. et Mahtani, R. (2021). \u201cGoing home [is] just a feel-good idea with no structure\u201d: A qualitative exploration of patient and family caregiver needs when transitioning from hospital to home in palliative care. <em>Journal of Pain and Symptom Management, 62<\/em>(3), e9\u2013e19. <a href=\"https:\/\/doi.org\/10.1016\/j.jpainsymman.2021.02.026\">https:\/\/doi.org\/10.1016\/j.jpainsymman.2021.02.026<\/a><\/li>\n<li><span> <\/span><span>Moore, K. J., Davis, S., Gola, A., Harrington, J., Kupeli, N., Vickerstaff, V., King, M., Leavey, G., Nazareth, I., Jones, L. et Sampson, E. L. (2017). Experiences of end of life amongst family carers of people with advanced dementia: Longitudinal cohort study with mixed methods. <em>BMC geriatrics, 17<\/em>(1), 135. <\/span><a href=\"https:\/\/doi.org\/10.1186\/s12877-017-0523-3\">https:\/\/doi.org\/10.1186\/s12877-017-0523-3<\/a><\/li>\n<li><span> <\/span><span>Shippee, T. P., Rowan, K.<\/span><span> et Henning-Smith, C. (2015). Supporting caregivers of older adults in making decisions: Current tools and future directions. <\/span><span>Dans J. Gaugler et R. L. Kane (dir.), <\/span><span><em>Family caregiving in the new normal<\/em><\/span><span> (p. 225-250). Academic Press.<\/span><\/li>\n<li><span>P\u00e9pin, E. (2019). <em>Description des besoins des proches aidants qui accompagnent une personne en soins palliatifs et de fin de vie \u00e0 domicile,<\/em> [th\u00e8se de doctorat, Universit\u00e9 du Qu\u00e9bec \u00e0 Rimouski]. 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Support for informal caregivers in Canada: A scoping review from a hospice and palliative\/end-of-life care lens. <em>Journal of Palliative Care<\/em>, <em>37<\/em>(3), 410\u2013418. <a href=\"https:\/\/www.google.com\/url?sa=E&amp;q=https%3A%2F%2Fdoi.org%2F10.1177%2F08258597221078370\">https:\/\/doi.org\/10.1177\/08258597221078370<\/a><\/li>\n<li>Gardiner, C., Taylor, B., Robinson, J. et Gott, M. (2019). Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study. <em>Palliative Medicine, 33<\/em>(9), 1189-1211. <a href=\"https:\/\/doi.org\/10.1177\/0269216319861925\">https:\/\/doi.org\/10.1177\/0269216319861925<\/a><\/li>\n<li><span data-contrast=\"none\" xml:lang=\"EN-US\" lang=\"EN-US\" class=\"TextRun SCXW219654596 BCX0\"><span class=\"NormalTextRun CommentStart CommentHighlightPipeRest CommentHighlightRest SCXW219654596 BCX0\">McIntosh, M. J., Williams, A. M., Eby, J. A., Duggleby, W., &amp; Leipert, B. D. (2012). \u201cThis is just where I live\u201d: A situational analysis of rural end-of-life caregiving. Journal of Rural and Community Development, 7(4), 38-61<\/span><\/span><span data-contrast=\"none\" xml:lang=\"EN-US\" lang=\"EN-US\" class=\"TextRun SCXW219654596 BCX0\"><span class=\"NormalTextRun CommentHighlightRest SCXW219654596 BCX0\">.<\/span><\/span><span class=\"EOP Selected SCXW219654596 BCX0\" data-ccp-props=\"{&quot;469777462&quot;:[851],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}\">\u00a0<\/span><\/li>\n<\/ol>\n<\/div><\/div><\/div><\/div><\/div><div class=\"et_pb_section_3 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_8 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_18 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"el_modal_popup_0 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_6\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"qui-sont-elles\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\r\n\r\n<div class=\"et_pb_section_4 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n\r\n<div class=\"et_pb_row_9 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n\r\n<div class=\"et_pb_column_19 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n\r\n<div class=\"et_pb_text_5 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2><strong>WHO ARE THEY?<\/strong><\/h2>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_0 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/12\/20240906_OBS_trajectoire_iconeSTST.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/12\/20240906_OBS_trajectoire_iconeSTST.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-11612\" alt=\"Ic\u00f4ne de statistiques\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">STATISTICS<\/h3><div class=\"et_pb_blurb_description\"><p><span data-contrast=\"auto\" lang=\"FR-FR\" class=\"TextRun SCXW136641426 BCX0\">While caregiving in Quebec and Canada is well documented statistically, there are currently no specific data on the number of caregivers who support a loved one through palliative or end-of-life phase.<span class=\"NormalTextRun SCXW136641426 BCX0\"> <\/span>Still, it is fair to assume that this covers a substantial proportion of caregivers.<span class=\"NormalTextRun SCXW136641426 BCX0\"> <\/span>In Quebec in 2023, 71,548 individuals died following an illness or incapacity (1); most will have been accompanied by loved ones during their final moments, and often well before that.<span class=\"NormalTextRun SCXW136641426 BCX0\"> <\/span><\/span><span class=\"EOP Selected SCXW136641426 BCX0\" data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_6 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span data-contrast=\"none\">Palliative or end-of-life caregivers are those who provide non-professional, unpaid support to a loved one with a serious illness or incapacity that limits their life expectancy. Caregiving in this context may span weeks, months or years, and unfold along a trajectory marked by significant emotional upheaval. Indeed, these caregivers are apt to experience considerable ordeals as they witness their loved one\u2019s capacity progressively decline from the time of diagnosis until death (2).  <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">Throughout the trajectory, palliative or end-of-life caregivers take on a wide range of responsibilities. These may span personal care and day-to-day activities \u2014 eating, personal hygiene, getting dressed, and so on \u2014 as well as administrative and logistical considerations like scheduling appointments, coordinating transportation, and managing finances (3, 4, 5).<\/span><span data-ccp-props=\"{\"201341983\":0,\"335551550\":6,\"335551620\":6,\"335559740\":360}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">At home, caregiving responsibilities can include managing pain, nutrition, and medical equipment, in addition to administering medication (4). Given that such care requires a comprehensive understanding of the medical situation, including treatment options and care settings (6), gaps in knowledge or an inability to manage symptoms can be a source of caregiver anxiety:   <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_1 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[W]hen you\u2019re dealing with nighttime crises, pain, or side effects from the medication . . . and this is not something you know about . . . well, you have questions. Getting support, having someone you can put your questions to, is crucial. [Free translation]<br \/><strong>Caregiver (cited in 7) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_7 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span data-contrast=\"none\">Often, as the end of life draws near, the caregiver\u2019s role intensifies accordingly. The focus here can turn to maximizing the loved one\u2019s comfort and quality of life, and sometimes on maintaining a constant bedside presence, especially when death is imminent (8, 9).<\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">Supporting a loved one through the palliative or end-of-life phase goes well beyond routine care, taking a significant emotional and human toll. In many cases, caregivers are a chief source of emotional support, ready to listen and offer comfort and empathy as their loved one comes to terms with their mortality \u2014 a process that, in itself, can evoke profound fears, uncertainties and existential distress (10, 11). This experience can stir deep and sometimes conflicting emotions in the caregiver, including anxiety, sadness, guilt, and hope. Such feelings are part of a grieving process that begins well before death, as caregivers anticipate the loss of their loved one and the prospect of life without them (12, 13, 14).  <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"none\">All the same, if being a palliative or end-of-life caregiver can be emotionally, physically and mentally draining, it can also prove a significant and positive experience: <\/span><\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_2 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I am so grateful for the opportunity to be able to return to [my grandmother] just the slightest amount of care that she afforded me throughout my life. <br \/><strong>Caregiver (cited in 15)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_8 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>A multifaceted reality <\/strong><\/h3>\n<p><span data-contrast=\"none\">Their trajectories may share certain features, but palliative and end-of-life caregivers are by no means a homogeneous group. Their experiences will vary according to multiple factors ranging from age and relationship with the care recipient to gender, financial situation, access to resources, and type of illness or incapacity (see Factors influencing the trajectory). Some will be considered primary caregivers and assume the bulk of the care, support and decision-making responsibilities; others will play a secondary or intermittent role, according to their abilities, geographic proximity, or connection to the person receiving care (3).   <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">In palliative and end-of-life contexts, multiple family members and others who are close to the care recipient may be mobilized concurrently, particularly during the advanced stages, turning the provision of support into a collective effort (3). Caregiving may thus be shared, transferred, or redefined throughout the trajectory, in keeping with each person\u2019s abilities, availability, and relationship to the care recipient. As such, a primary caregiver may be supported by others, be temporarily replaced, or see their role change as their network becomes involved (3). <\/p>\n<p>Familial and cultural configurations play into this plurality. Among certain immigrant families, for example, caregiving will involve multiple primary caregivers, while in some Indigenous communities, caregiving is part of a community dynamic that mobilizes an extended network (3, 16).    <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><style id=\"el-divi-el_modal_popup_0-popup-layout-27925\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_1 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_13\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"age\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_5 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_10 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_20 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_9 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Age<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_10 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Age shapes the experience of palliative or end-of-life caregiving in numerous ways. <\/p>\n<p>Caregivers who support a loved one at the end of life are very often elderly themselves. This trend aligns with a broader demographic shift: in Quebec, for example, people aged 65 and up are expected to account for roughly 25% of the population by 2031 (143). Given the aging population, it is increasingly common for end-of-life caregivers to be aged 50 or older, or even fall within the 60, 70-, or 80-plus age groups (5, 8, 13, 16, 30, 72, 78, 93, 135, 144, 145, 146, 147).   <\/p>\n<p>Older caregivers often have health issues of their own that can affect their physical or psychological ability to provide care throughout the trajectory, rendering the role more difficult (148, 149, 150). From a psychological perspective, advanced age is associated with higher levels of depression and lower subjective well-being, particularly among caregivers (128).  <\/p>\n<p>Younger caregivers can face a different set of challenges. Many belong to the \u201csandwich generation\u201d meaning they must simultaneously juggle their responsibilities as the parents of young children with caring for aging parents, in addition to holding down a job. This accumulation of roles can represent a significant burden and leave them with little time for themselves (76).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_11 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>These age-related variations highlight the importance of adopting a nuanced approach to caregiver support, taking into account where each individual is in their own life course (149, 150). <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_1-popup-layout-28021\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_2 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_11\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"genre\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_6 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_11 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_21 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_12 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Gender<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_13 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Women are disproportionately more likely than men to be caregivers of a loved one (3, 88). This overrepresentation is especially pronounced among spousal or partner caregivers, largely because women tend to outlive their partners, thereby increasing the likelihood that they will be the ones to provide end-of-life care (88).   <\/p>\n<p>As well as representing the majority of caregivers, women predominantly handle personal care, emotional support, and domestic tasks, while men tend to see to financial and administrative matters (3). This division is largely driven by internalized gender roles and expectations.  <\/p>\n<p>Gender also shapes the experience of caregiving. Female caregivers are more likely to view caregiving as a \u201cnormal\u201d responsibility, ascribing a sense of duty and dedication to the role and taking it on without complaint (54). Consequently, being a woman contributes to naturalizing and downplaying the role, while simultaneously masking its inherent difficulties (54). This gender bias is reflected in practice: it is often simply assumed by family, friends, and professionals that a woman will provide care to her partner, with little regard as to her limits or her right to choose. Societal norms thus reduce a woman\u2019s caregiving to a mere extension of marital or moral commitments (22) \u2014 a dynamic that does not necessarily apply to their male counterparts.     <\/p>\n<p>But male caregivers in palliative and end-of-life contexts face their own set of hurdles. These include limited recognition of their role, a lower inclination to seek psychosocial support, and unmet informational or navigational needs. Because the available services are rarely tailored to their realities, their distress and sense of isolation can intensify throughout the trajectory (71).  <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_2-popup-layout-28023\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_3 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_14\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"situation-socioeconomique\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_7 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_12 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_22 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_14 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Socioeconomic status <\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_15 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Socioeconomic status heavily influences a caregiver\u2019s ability to support their loved one without compromising their own well-being. This disparity stems largely from how financial security affects access to support resources and shapes the practical choices available across the trajectory. <\/p>\n<p>Caregivers with limited means face substantial additional stressors driven by the out-of-pocket costs of care, medications, or private support services (158). Low income also restricts the feasibility of home-based end-of-life care, as managing a patient at home entails expenses not covered by public insurance plans (specialized equipment, equipment rentals, transportation, hospital parking, etc.) that can accumulate into a crushing financial liability (4, 159).  <\/p>\n<p>Employment status further conditions the caregiving experience; those who remain in the workforce must continuously balance professional duties with care-related responsibilities (16). In some cases, the intensive nature of this support forces a deliberate withdrawal from the workforce (5), with severe financial fallout that disproportionately affects families who are already economically vulnerable.  <\/p>\n<p>A caregiver\u2019s education level can act as a proxy protective factor. Higher education, which often supports financial security, also facilitates system navigation and access to support services, thereby indirectly alleviating isolation and financial strain for caregivers (131). Conversely, the systemic barriers faced by those with lower formal education can present added hurdles, potentially complicating the grieving process both before and after the patient\u2019s death (160, 161).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_16 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Socioeconomic inequalities do not operate in isolation. They can combine with other forms of marginalization to create situations of heightened vulnerability for certain caregivers, exacerbating the difficulties encountered at various stages of the trajectory (15).  <\/p>\n<p>For example: <\/p>\n<ul>\n<li><strong>Employed caregivers from ethnocultural minority backgrounds,<\/strong> who are statistically more likely to hold precarious jobs, often face limited access to caregiving leave (158, 162). They also tend to make less use of end-of-life residential care services, particularly when they have low incomes \u2014 a reality that can heavily compound the physical, psychological, and financial burdens of care (163, 164).  <\/li>\n<li>When caregiving occurs in a <strong>context of housing instability,<\/strong> economic precariousness is often accompanied by other forms of social exclusion (78). In these scenarios, caregivers \u2014 who often come from the care recipient\u2019s \u201cstreet family\u201d and may experience housing instability themselves \u2014 must fulfil their role under conditions of extreme vulnerability. As a result, the boundaries between basic survival, mutual support and care can become blurred, intensifying the hardships encountered along the trajectory (78).  <\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_3-popup-layout-28029\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_4 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_14\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"croyances-et-spiritualite\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_8 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_13 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_23 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_17 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Spirituality and religious beliefs<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_18 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Spirituality and religious beliefs can make adversity easier to cope with \u2014 but they can also become factors that complicate the end-of-life experience, particularly during bereavement (82). <\/p>\n<p>For many caregivers, spirituality and religion offer structure, comfort, and guidance in navigating the illness and loss of a loved one (3). Religious or spiritual rituals, practices, and traditions can support the search for meaning and facilitate the grieving process. Religious and spiritual communities may also represent a significant source of support, helping to alleviate isolation and strengthen the sense of belonging (130).   <\/p>\n<p>How people understand life, suffering, and death is deeply rooted in their cultural, spiritual, and existential backgrounds (23). Notably, these frames of reference can influence expectations and decisions regarding care. For example, some caregivers may prioritize sustaining life at all costs, or place particular importance on observing specific rituals:   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_3 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>My father always said he wanted to live, that it was important to him&#8230; We were born in a country where there is nothing \u2014 no education \u2014 and you have to fight to survive. We\u2019re used to that. [Free translation]   <br \/><strong>Caregiver (cited in 23)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_19 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Beliefs about the body of the deceased can be a particularly sensitive issue. Tensions can arise when caregivers and other family members hold differing views on funeral rites. Such differences can complicate the grieving process by creating conflict and adding to the emotional burden, particularly when caregivers feel excluded from decision-making or disagree with the choices made (129).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_20 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Beliefs and spirituality merit recognition both as resources that can support interventions and as essential to understanding individual experiences. Recognizing these dimensions is key to a person-centred approach to care that promotes cultural safety. Indeed, the beliefs held by caregivers and the person receiving end-of-life care may be misunderstood \u2014 or even rendered invisible \u2014 by professionals, especially when they diverge from dominant Western cultural and spiritual norms (23).   <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_4-popup-layout-28039\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_5 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_15\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"sante-de-la-ppa\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_9 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_14 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_24 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_21 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Caregiver health<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_22 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>A caregiver\u2019s own health is a critical factor in how the trajectory unfolds. It directly dictates their capacity to take on daily responsibilities, determines the external resources they choose to bring in, and shapes the major decisions made along the way (52, 182). <\/p>\n<p>The sustained demands of caregiving can trigger a wide array of physical, psychological, and emotional symptoms \u2014 stress, fatigue, exhaustion, anxiety, insomnia, heart palpitations and so on \u2014 that can drastically erode quality of life (24, 25, 67). In some cases, this relentless strain may cause such profound burnout that the caregivers themselves become patients, requiring intensive medical and psychological intervention (102).  <\/p>\n<p>For those already navigating functional limitations, chronic pain, or physical health problems, adding caregiving to the mix introduces extra challenges that significantly affect their ability to provide support (182). Similarly, underlying mental health issues make it much harder to manage both the acute stress of a disease\u2019s progression and the mounting responsibilities it entails (182).  <\/p>\n<p>In the end, caregivers with fragile or at-risk health require a more robust safety net in order to sustain their efforts (182). When the available resources can no longer compensate for a caregiver\u2019s physical or psychological limitations, a transition in care \u2014 such as relocating the care recipient to a hospital or long-term care facility \u2014 becomes unavoidable, regardless of anyone\u2019s wishes (182). Critically, these turning points are rarely about caregiver capabilities alone; in reality, they stem from the complex interplay between the care recipient\u2019s medical decline, the caregiver\u2019s failing health, and the availability of formal support structures.   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_23 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Keeping caregivers healthy is fundamental to sustaining their engagement and ensuring their well-being. This reality underscores the necessity of recognizing caregivers not merely as partners in care, but also as individuals who may have support needs of their own that merit attention. Ultimately, caregivers who are able to maintain their own identity, personal interests and life balance will be far better equipped to withstand the demands and daily stresses associated with providing care and support to someone else (11).   <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_5-popup-layout-28049\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_6 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_9\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"appartenance-a-un-groupe-minoritaire\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_10 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_15 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_25 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_24 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Minority group membership<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_25 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregiver trajectories in palliative and end-of-life trajectory are also shaped by factors related to affiliation with one or more minority groups. <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_26 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Ethnocultural diversity<\/strong><\/h3>\n<p>Caregivers from ethnocultural minority communities frequently encounter distinct hurdles across the trajectory:<\/p>\n<ul style=\"margin-bottom: 15px;\">\n<li><strong>Systemic racism and discrimination:<\/strong> experienced in interactions with health and social service workers can limit a caregiver\u2019s willingness to seek help and use the available resources (15). <\/li>\n<li><strong>Barriers to service access:<\/strong> Caregivers from ethnocultural minorities are less likely to be aware of or access institutional programs. This lack of connection inevitably heightens the physical, psychological, and financial burden of caregiving (163, 165). <\/li>\n<li><strong>Language and communication gaps:<\/strong> Barriers related to language fluency \u2014 particularly with regard to French proficiency in Quebec \u2014 can disproportionately affect minority families. These difficulties extend beyond sharing or understanding information; they can also stall dialogue with care teams, affect caregivers\u2019 sense of being heard, and erode confidence in the health and social services system (166). Such isolating experiences can feed feelings of powerlessness and insecurity, undermining trust in professionals, complicating the caregiving trajectory, and potentially widening existing inequalities (69, 166, 167, 168).  <\/li>\n<\/ul>\n<p>Caregiving in end-of-life situations may also be influenced by specific cultural values \u200b\u200bthat shape family dynamics and decision-making processes (69, 166). Approaches centred on individual patient autonomy that are characteristic of Western healthcare may conflict with other family and community-based concepts of care. For example, a physician\u2019s request for family members and loved ones to leave the room in order to address the care recipient directly may be perceived as inappropriate and insensitive:   <\/p>\n<\/div>\n<div class=\"et_pb_blurb_4 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>How could the patient talk to him? The patient was very sick. He needed family to stay. The one who took care of him knew better about the situation than the patient himself. He [the doctor] never considered our feelings.     <br \/><strong>Caregiver (cited in 157)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_27 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Tensions can also arise from varying perceptions of health, illness, or death, as well as from care practices that differ from the dominant model. For example, seeing traditional care methods and informal care as complementary to prescribed medical treatments can lead to disagreements among caregivers, care recipients, and clinicians (166).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_28 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>In a context of ethnocultural diversity, end-of-life decision-making and care practices are influenced by cultural, religious, and social frameworks, highlighting the limits of a one-size-fits-all approach. Failing to acknowledge such differences can give rise to misunderstandings or tensions between caregivers and care teams (157, 167, 169).  <\/p>\n<p>For more information, <a style=\"font-weight: bold;\" href=\"https:\/\/observatoireprocheaidance.ca\/en\/trajectory-of-immigrant-caregivers\/\" target=\"_blank\" rel=\"noopener\">see the Trajectory of immigrant caregivers.<\/a><\/p>\n<\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_text_29 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Indigenous caregivers<\/strong><\/h3>\n<p>For Indigenous people, access to health services \u2014 diagnosis, testing, etc. \u2014 can be complicated, particularly in rural or remote regions, delaying access to appropriate care and intensifying the burden on caregivers (169). This is particularly well documented in cases of neurocognitive disorders, including dementia, which in some communities remain poorly understood, making early symptom identification more difficult and stalling the delivery of adapted care (170).  <\/p>\n<p>A further consideration is the central role of family, friends and collective structures in Indigenous cultures, particularly regarding end-of-life decision-making and support. Broader community involvement is deeply valued, provided that all choices are in the patient\u2019s best interests (169). There is also a strong preference for having end-of-life care take place at home. Overall, limited access to formal healthcare resources, coupled with cultural values that emphasize family responsibility, can render the caregiving role exceptionally demanding.    <\/p>\n<p>Few studies have examined the issues facing Indigenous caregivers in palliative and end-of-life contexts, and even fewer have focused on those living in urban areas. The latter, however, may face specific challenges, such as social isolation, distance from support networks, and limited access to certain resources (26).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_30 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Health professionals must adopt approaches that are culturally safe, holistic, and centred equally on patients and their families, notably by recognizing both the role of spirituality and the impacts of colonialism, including trauma associated with the residential schools and the historical relationship with the healthcare system (169). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_31 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>2SLGBTQIA+ communities<\/strong><\/h3>\n<p>One of the most well-documented barriers facing 2SLGBTQIA+ caregivers is the lack of legal recognition for chosen relationships, particularly when supporting a partner. Consequently, if a caregiver has not been formally designated as a substitute decision-maker, they may find themselves excluded from clinical decisions or even barred from visiting the bedside, with preference given to the patient\u2019s biological family (77). The final wishes of both patients and their caregivers may likewise be disregarded or overridden by biological family members who hold legal rights. Moreover, when a patient receiving end-of-life care is admitted to a facility, staff routinely default to contacting biological relatives, further undermining the recognition of chosen partners.    <\/p>\n<p>The issue of relationship disclosure can pose an additional hurdle. Fearing discrimination or a hostile reaction, some 2SLGBTQIA+ caregivers choose to withhold the true nature of their relationship from clinical staff. However, this protective non-disclosure can render them entirely invisible to the care team, restricting not only their access to medical updates, but also erasing acknowledgement of their role (171).  <\/p>\n<p>Navigating these fears of prejudice and forced invisibility complicates the emotional weight carried by 2SLGBTQIA+ caregivers, who must process anticipatory grief while remaining hyper-vigilant within the care setting (140). <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_6-popup-layout-28035\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_7 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_7\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"contexte-lien-avec-la-personne-aidee\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_11 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_16 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_26 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_32 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Connections with the care recipient and the broader circle<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_33 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregiving at the end of life covers a wide range of relationships, from close friends to relatives, although the role is typically assumed by spouses, partners or adult children (3, 4, 5, 9, 90, 91, 147, 155, 156, 173). The extent of caregiver involvement is largely determined by proximity to the person receiving care. Those in the immediate circle are therefore the most likely to provide primary care, with grandchildren and friends tending to play a more secondary role (3).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_34 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Partner caregivers <\/strong><\/h3>\n<p>When a spouse or partner assumes this role, the couple\u2019s relationship becomes central to the caregiving experience. Their bond can be transformed, sometimes dramatically, as the dynamic shifts from life partners and companions to a relationship centred on caregiving:  <\/p>\n<\/div>\n<div class=\"et_pb_blurb_5 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>When you\u2019ve been with the same person for 35 years and you no longer recognize them, that\u2019s hard. I was the lover who turned into the nurse, the aide, the handyman \u2014 I was the housekeeper. [Free translation]  <br \/><strong>Caregiver (cited in 7) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_35 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Partner caregivers may experience the gradual loss of their loved one well before the latter dies, as they witness their suffering firsthand and envision a future without them (27, 75). The dying partner\u2019s attitude toward their own death may further complicate the couple\u2019s dynamic. For instance, if they exhibits a resigned acceptance, this can be difficult for their caregiver, who may still be struggling to come to terms with the prospect of losing their loved one (3). Such situations add a complex relational dimension to an already difficult situation.    <\/p>\n<p>Family, friends, and professionals often take for granted that a spouse or partner will \u201cnaturally\u201d assume the role of caregiver, bypassing any discussion of consent or of personal boundaries (22). Caregiving may thus be experienced as a moral obligation inseparable from long-term relationship or marital commitments, adding to the already heavy burden of end-of-life care (22).  <\/p>\n<p>Sexual intimacy typically erodes over the course of the caregiving trajectory, as the need to provide daily personal care and handle all tasks associated with caregiving reshapes the emotional and intimate bonds between partners (174). Partner caregivers may move through \u2014 and not necessarily in a linear fashion \u2014 denial about their changing sex life, silent frustration over the loss of physical intimacy, attempts to maintain an emotional connection, sadness over the fading of the erotic bond, and, in some cases, acceptance and a redefinition of what intimacy means (175). Navigating this transformation is all the more difficult because it receives little social recognition (176).    <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_36 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Professional interventions should take into account every dimension of the couple\u2019s relationship (141). By recognizing partner caregivers not merely as sources of support, but also as individuals with distinct vulnerabilities of their own, professionals can better address their diverse needs, including shifts in intimacy that occur as couples work through the challenges of progressive illness (179, 180, 181).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_37 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Caregivers of a parent <\/strong><\/h3>\n<p>Compared to partner caregivers, adult children who care for a parent report feeling less prepared for their role and experiencing greater difficulty discussing issues related to illness, decline, and death with the care recipient \u2014 factors that can heighten their distress (2, 152). Intergenerational dynamics at play within the parent-child relationship also help shape this caregiving experience, particularly concerning role reversal and the sense of filial responsibility (152).  <\/p>\n<p>Adult children, notably daughters and daughters-in-law, are often deeply involved in providing support, particularly in contexts of intergenerational migration where their engagement is facilitated by co-residence or residential proximity (134, 135). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_38 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Beyond the caregiving dyad: the broader social circle <\/strong><\/h3>\n<p>The palliative and end-of-life caregiving trajectory is also shaped, not just by the caregiver\u2019s relationship with the care recipient, but also by connections within the social circle. <\/p>\n<p>Family and friends can be invaluable resources; indeed, sharing responsibilities with other family members or loved ones helps alleviate the burden of care and reduce social isolation (7).  <\/p>\n<p>However, palliative and end-of-life caregiving always plays out within a framework of pre-existing \u2014 and sometimes conflict-ridden \u2014 relationships. These dynamics heavily influence how responsibilities are divided and the levels to which people get involved, sometimes leading to tension and discord (3). For example, shared decision-making among multiple family caregivers can give rise to disagreements regarding medical care choices, the organization of care, or how best to support the person at the end of life (6).   <\/p>\n<p>These tensions can be further exacerbated when the care recipient participates in decision-making as well (3). For example, a family dispute may cause a patient to withhold information about their condition from certain relatives. This, in turn, can isolate the primary caregiver, leaving them shoulder the burden of end-of-life support \u2014 including coordinating care and managing visits \u2014 largely unaided (3). Such situations can increase the load borne by a single caregiver, who must handle escalating responsibilities without the benefit of shared support or collective decision-making.   <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_7-popup-layout-28042\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_8 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_16\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"type-incapacite\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_12 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_17 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_27 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_39 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Type of illness or incapacity of the person receiving care<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_6 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>The nature of the illness or incapacity affecting the care recipient fundamentally shapes the trajectory of palliative and end-of-life caregiving. A wide range of conditions \u2014 including neurodegenerative diseases, cancer, cardiovascular and respiratory diseases, and other progressive chronic conditions \u2014 can lead to this end stage of care, and each presents distinct characteristics that uniquely impact the caregiving experience. Consequently, while these diverse caregiving journeys converge at the end of life, the distinct pathways leading there will inevitably dictate the key junctures and turning points that mark the palliative and end-of-life trajectory (128).   <\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_40 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The care recipient\u2019s illness or incapacity considerably affects the kinds of caregiving support provided (3, 4, 5). <\/p>\n<p>For instance, when a patient faces severe physical impairment \u2014 for example, advanced pulmonary disorders or amyotrophic lateral sclerosis (ALS) \u2014 caregiving tends to revolve around complex medical tasks, such as managing pain or acute respiratory failure (24, 90). Meanwhile, progressive conditions like neurocognitive disorders demand a continuously mounting level of caregiver support, imposing a long-term physical and emotional burden that intensifies over time (24). Finally, illnesses characterized by erratic timelines complicate care even further by making it hard to anticipate future needs. This unpredictability is common in non-cancerous conditions, where establishing a clear prognosis is notoriously complex \u2014 an ambiguity that hinders the caregiver\u2019s ability to prepare and significantly heightens their anxiety about the future (5, 69).    <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_41 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>Unequal access to care<\/strong><\/h3>\n<p>A patient\u2019s diagnosis often seals their fate when it comes to accessing specialized care and services. While those with advanced cancer generally benefit from an earlier, more structured palliative pathway, individuals battling non-cancer or age-related conditions are routinely left out in the cold, accessing these vital services only at a later stage, long after their health has severely deteriorated and their autonomy has vanished (66, 67, 68).  <\/p>\n<p>This systemic inequality in access to palliative care has direct, real-world consequences for caregivers. Those supporting non-cancer patients must frequently absorb a heavier, more exhausting workload while receiving significantly less institutional backing. Without a palliative framework to guide them, caregivers may be left with too many unanswered questions, adding considerable strain to their overall burden (4, 32, 34) <strong style=\"font-size: 15px;\"><a class=\"absence-integration-approche-palliative\" href=\"#\">(see Absence of a palliative approach to care).<\/a><\/strong> <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_8-popup-layout-28045\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_9 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_16\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"volontes-et-capacites\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_13 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_18 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_28 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_42 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Care recipient wishes and caregiver capacity<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_43 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The final wishes expressed by people in palliative and end-of-life contexts can have profound repercussions for their caregivers. <\/p>\n<p>As death approaches, these wishes often become a hallowed ideal \u2014 for example, dying in a chosen setting surrounded by loved ones, with certain symbolic touches (music, atmosphere, etc.). However, bringing these wishes to life falls squarely on caregivers who are already balancing complex responsibilities. Grafted onto their daily duties are the logistical demands of stage-managing the process of dying itself \u2014 a role that entails actively managing the physical environment, overseeing visitors, and curating a peaceful end-of-life atmosphere (19).   <\/p>\n<p>Some caregivers report feeling pressured to fulfil this role, driven by a sense of duty, societal expectations, or both. However, despite a profound desire to honour their loved one\u2019s final wishes, they often lack the underlying resources, support, or capacity to do so. This mismatch frequently triggers stress, guilt, and a painful conflict between the desired ideal and what is realistically possible. Ultimately, the ideal of a perfectly orchestrated end-of-life experience, while deeply human, tends to mask the practical constraints and logistical burdens placed on caregivers (22, 182).    <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_44 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>The wish to end life at home<\/strong><\/h3>\n<p>Remaining at home in a familiar environment, rather than fading away in a hospital ward or care home, is one of the most common final wishes expressed by people at the end of life (159). However, while caregivers may embrace this wish, a strong cultural tendency to idealize at-home end-of-life care frames it as the gold standard for a &#8220;good&#8221; death, glossing over the actual impact of such a choice on the person who provides the care (22).  <\/p>\n<p>Indeed, the desire to avoid hospitalization at all costs can have significant repercussions for caregivers, who must shoulder a considerable medical and emotional load, often in complete isolation. In this context, a loved one\u2019s final wishes can trap caregivers with a painful quandary \u2014 especially when the required care is beyond their capacity, forcing them to draw hard boundaries at the risk of feeling judged or experiencing regret (17).  <\/p>\n<p>This silent pressure can also be compounded by \u201cguilt tripping,\u201d where others imply that the success of home care rests entirely on the caregiver\u2019s shoulders (22): <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/09\/apostrophe.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 0px; padding-top: 10px;\">I was told in no uncertain terms that, if I couldn\u2019t provide a particular treatment or level of care, there\u2019d be no choice but to hospitalize [the care recipient] \u2014 even though [their] wish was to die at home. [Free translation]<br \/>\n<strong>Caregiver (cited in 34)<\/strong><\/p>\n<p>In this context, professionals must bear in mind that caregivers are also experiencing the ordeal of their loved one\u2019s impending death and may feel guilty for being unable to honour their final wishes (34). Thus, without calling at-home end-of-life care into question, the notion that home is the ideal setting for a \u201cgood death\u201d must be nuanced. Equally essential is acknowledging the caregiver\u2019s role and boundaries in this scenario so that they may be provided with the appropriate support (22).  <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_9-popup-layout-28047\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_10 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_10\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"organisation-et-acces\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_14 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_19 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_29 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_45 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Service organization and access<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_46 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Access to specialized palliative and end-of-life services in Quebec and Canada remains highly uneven. <\/p>\n<p>To begin with, palliative care generally remains limited to certain settings (hospital units or hospices) and to the terminal phase of an illness. Consequently, eligibility is restricted for many people who have age-related incapacities or degenerative, cardiac, or pulmonary diseases. This can also apply to other life-limiting conditions, due to the difficulty, if not impossibility, of establishing a clear prognosis or of tracking disease progression and the individual\u2019s decline with any certainty (5, 68). As a result, during times of acute need \u2014 such as periods of declining autonomy \u2014 accessing palliative care is perceived as complex and poorly coordinated, fundamentally increasing the burden on caregivers as they struggle to manage rapidly changing symptoms and treatments (62).   <\/p>\n<p>On a related note, in a context marked by capacity constraints and a policy directive prioritizing at-home palliative and end-of-life care whenever possible, a growing number of patients are spending their final days at home. This can entail significant responsibilities for caregivers, who may not always have the information, preparation, or support needed to provide such care (109, 122).  <\/p>\n<p>Many caregivers also deplore the widespread lack of coordination that makes it difficult to connect diverse professionals and identify available resources \u2014 a state of affairs that compromises continuity of care and encumbers caregivers with avoidable additional stress, thereby worsening an already significant burden (5).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_7 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Many times you need a team effort, but there is not the connection between the social worker, the Home Care, the doctor, the whatever. There\u2019s not somebody that can put it all together for the individual.  <br \/><strong>Caregiver (cited in 11)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_47 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Moreover, even when palliative and end-of-life services exist on paper, caregivers can encounter a bruising uphill battle to actually access them, being routinely met with unreturned calls or left adrift during critical times, such as a loved one\u2019s rapid decline or the aftermath of their death (17). This organizational inertia forces caregivers to redouble their efforts, hounding administrators and pushing through systemic silence and rejection (154). Thus, access to care is not dictated by clinical urgency alone: it also demands that caregivers successfully navigate a system that, in many cases, actively locks them out.   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_48 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>Systemic barriers can also create deep inequalities among caregivers. <\/strong><\/h3>\n<p>For example:<\/p>\n<ul>\n<li>When precarious immigration status means exclusion from public coverage, caregivers are forced to either assume the full burden of care themselves, or resort to costly private resources (23).<\/li>\n<li>Low-income caregivers are disproportionately penalized, obliged to pay significant out-of-pocket sums to secure care or services that the public system cannot supply (5).<\/li>\n<li>Living in a rural or remote region presents distinct challenges. Limited local services often compel caregivers to travel long distances \u2014 a situation that saps time, energy, and financial resources (26, 136, 187).<\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_10-popup-layout-28052\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_11 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"lieu-de-residence\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_15 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_20 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_30 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_49 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Geographic location<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_50 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Living in a rural or remote area adds a unique set of challenges to the experience of caregiving: <\/p>\n<ul style=\"margin-bottom: 15px;\">\n<li>\n<p>The distances involved frequently limit access to specialized services, medications, medical equipment, and formal support resources (138).<\/p>\n<\/li>\n<li>\n<p>Chronic shortages in qualified professionals can reduce access to home care visits, respite programs, and psychosocial interventions, heavily increasing the caregiver\u2019s workload (138).<\/p>\n<\/li>\n<li>\n<p>Caregivers must take on a much larger share of home care duties themselves, notably because institutional resources are distant or less accessible (138).<\/p>\n<\/li>\n<li>\n<p>The desire to remain at home until death is often stronger in rural areas, driven by a deep attachment to place and a cultural emphasis on self-sufficiency. Honouring this choice often relies heavily on the involvement of caregivers, who assume a central role in supporting a death at home (138). <\/p>\n<\/li>\n<li>\n<p>Some caregivers find themselves shouldering their responsibilities in isolation, with no one nearby who truly understands their daily reality \u2014 a dynamic that can trigger a deep sense of loneliness (152).<\/p>\n<\/li>\n<\/ul>\n<p>Taken together, the relentless demands of the role, combined with little to no respite, isolation, difficulty accessing services and a paucity of emotional support, leave rural caregivers highly vulnerable to anxiety, psychological distress, and burnout (137). <\/p>\n<p>Conversely, rural locations can be characterized by strong community ties, informal support networks, and a deep-seated culture of \u200b\u200bmutual aid, all of which can benefit caregivers extensively. <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_8 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>What you find in the countryside isn&#8217;t necessarily what you find in the city. Here, there\u2019s solidarity, mutual support, and a big emphasis on family. You\u2019re born here, you stay here, you and your brothers and sisters. There\u2019s a lot of you looking out for each other. [Free translation]   <br \/><strong>Caregiver (cited in 28)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_51 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Informal resources can partially compensate for the lack of formal services. However, they cannot replace structured clinical support, particularly regarding psychological counseling, bereavement care, and complex symptom management (15).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_9 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Towards the end, I needed more support but couldn\u2019t get it&#8230; there was no one to come because I live in a rural region&#8230; you really feel alone at a time like that. [Free translation] <br \/><strong>Caregiver (cited in 7)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_11-popup-layout-28056\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_12 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"lieu-de-soins\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_16 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_21 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_31 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_52 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Care settings<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_53 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The care setting has an important influence on the caregiving experience.<\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_54 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>At home<\/strong><\/h3>\n<p>The home can quickly transform into a demanding, even overwhelming, care setting. Caregivers must contend with complex medical tasks, the requirement to be continually present, and the weight of emotionally charged decisions, such as balancing the desire to prolong a loved one\u2019s life with the need to preserve their comfort and dignity (6). These combined responsibilities can escalate into a near-constant presence, especially in the final stages of life, when some caregivers must maintain a round-the-clock vigil at the bedside (8).  <\/p>\n<p>Certain times of day may also be more difficult: <\/p>\n<\/div>\n<div class=\"et_pb_blurb_10 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[The] nights are often the thing that tip people over the edge. <br \/><strong>Caregiver (cited in 94)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_55 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Furthermore, providing at-home palliative or end-of-life care frequently demands significant practical, logistical, and financial adjustments. Families must modify living spaces, adapt to new routines and dip into private resources, all the while carefully weighing whether the caregiver is truly equipped to assume this role. Caregivers must therefore be fully prepared for the realities of home care, which means the onus for guiding them toward informed choices is on the care team.  <\/p>\n<\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_blurb_11 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[Caregivers] don\u2019t realize until they get home the physical and emotional demands that&#8230; then brings, and quite often within 24 or 48 hours of being home, you get a bit of a crisis going on. <br \/><strong>Caregiver (cited in 94) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_56 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Despite these challenges, caregiving at home can yield profoundly positive experiences, strengthening emotional bonds and imbuing the act of care with profound personal meaning. Honouring a loved one\u2019s wishes to die at home often serves as a powerful source of fulfillment, giving caregivers a lasting sense of purpose in their commitment (58, 122).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_12 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[I]t was a privilege to be close to my father to fulfill his wish to die at home. It\u2019s the most beautiful gift we could have given him, that he could die with dignity \u2014 it was something I really wanted to give him. [Free translation]<br \/><strong>Caregiver (cited in 58) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_57 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>In summary, providing palliative or end-of-life care at home is a deeply individual experience, uniquely shaped by the personal values, resources, and limitations of each caregiver. The final impact of home care hinges not only on access to round-the-clock professional support, but also how thoroughly caregivers are prepared for what lies ahead and whether they can reconcile the demands of continuous care with safeguarding their own well-being (7, 94, 122).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_58 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Other care settings<\/strong><\/h3>\n<p>Within facilities like hospitals, hospices, and long-term care centres, a caregiver\u2019s role naturally shifts toward physical presence, emotional support, and shared decision-making, though their involvement remains pivotal (6). Institutional care requires families to establish a relationship of trust with the care team to ensure their loved one\u2019s dignity and care needs are met (11). When this relationship is lacking, weakens, or breaks down entirely, the consequences are immediate: caregivers can become hyper-vigilant and feel compelled to maintain a constant presence, stepping back into active caregiving, escalating complaints to management, or policing staff to ensure they do their duties (11).   <\/p>\n<p>However, deep-seated structural factors create stark inequalities in the quality of care provided across different settings. Not all facilities consistently share information regarding the care recipient\u2019s condition or the next steps in their care path. In certain contexts \u2014 particularly within CHSLDs, Quebec\u2019s public long-term care facilities \u2014 chronic staff shortages and being continually redirected toward different professionals make it exceptionally challenging to access reliable information (8). Furthermore, since not all care settings embed a palliative approach into their operations, many individuals receive care unsuited to their condition, leaving caregivers unable to access essential support <a class=\"integration-approche-palliative\" href=\"#\" style=\"font-weight: bold;\">(see Integrating a palliative approach to care)<\/a> (23).   <\/p>\n<p>By mandate, the CHSLDs house older adults experiencing a severe loss of autonomy who require continuous clinical oversight, rendering them unable to remain at home (84). Consequently, these facilities accommodate a high volume of individuals at the end of life. However, the institutional environment is not always tailored to end-of-life care, leaving caregivers feeling helpless as they witness a decline that is sometimes accelerated by inadequate care and a poorly adapted physical layout (23). Some caregivers describe an end-of-life experience marred by a sense of haste and an overly bureaucratic atmosphere \u2014 a far cry from the peaceful environment they had hoped for. They also report feeling drained from the constant travel to meet facility demands (8), compounded by communication failures that, in some cases, deprived them of the chance to be present at their loved one\u2019s death (8). <\/p>\n<p>These severe systemic shortfalls within CHSLDs underscore the urgent need to integrate a palliative approach immediately upon admission, while guaranteeing continuous support for caregivers, including bereavement counselling after death (135).    <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_12-popup-layout-28054\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_13 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_17\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"entree-en-proche-aidance\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_17 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_22 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_32 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_59 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2><strong>ENTRY INTO CAREGIVING<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_60 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The caregiving journey often begins long before the transition to palliative or end-of-life context. Many caregivers assume the role gradually, supporting a loved one through a chronic illness, health crisis or form of incapacity that is not necessarily terminal. Because such support can span years, it is not uncommon to enter the end-of-life phase already carrying a profound sense of physical and emotional fatigue. To learn more about what caregivers&#8217; experience prior to this phase, <strong><a href=\"https:\/\/observatoireprocheaidance.ca\/en\/caregiving-trajectories\/\" target=\"new\" rel=\"noopener\">see the Observatory&#8217;s other caregiving trajectories.<\/a><\/strong>   <\/p>\n<p>However, caregiving can also begin overnight with an unexpected terminal diagnosis or unfavourable prognosis. In these situations, the entry into caregiving is abrupt and shocking, often accompanied by a rapid escalation of responsibilities amid a now-uncertain future.  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_13 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">CAREGIVER NEEDS AT THE ONSET OF CAREGIVING<\/h3><div class=\"et_pb_blurb_description\"><p>Caregivers need a clear, practical understanding of their loved one\u2019s symptoms and needs, what to expect as the illness progresses, and how the end of life uniquely manifests within that specific condition. Support is vital during this time, allowing caregivers to provide meaningful care and face the imminence of loss without becoming overwhelmed (17). <\/p>\n<p>The start of the palliative and end-of-life trajectory is an opportune time for open, compassionate conversations between caregivers, care recipients, and health professionals. These discussions provide a space to address such matters as:<\/p>\n<ul>\n<li>Care preferences and goals <\/li>\n<li>Hopes for the end of life (e.g., making peace, reuniting with family members) <\/li>\n<li>Financial management <\/li>\n<li>Where the care recipient wishes to spend their final days (6, 18) <\/li>\n<\/ul>\n<p>Crucially, these conversations must also account for the caregiver\u2019s own preferences, wishes, needs, and capacity. Indeed, their involvement and availability are the cornerstones of end-of-life care, particularly when the goal is aging in place. Acknowledging their limitations, rather than assuming unlimited availability, fosters care planning that is realistic, sustainable, and respectful of everyone involved (22, 31, 51, 181).   <\/p>\n<p>Even when circumstances do not allow these exact wishes to be realized, anticipating the stages ahead can benefit both care recipients and caregivers. While these topics can be tough to address, thinking and talking about them early on can help ease the emotional burden when health declines, guiding choices that reflect the caregiver\u2019s capacity and limitations (6).  <\/p>\n<p>Finally, these preferences can also be formalized through legal frameworks (e.g., <strong><a href=\"https:\/\/www.quebec.ca\/en\/justice-and-civil-status\/wills-estate\/wills\" target=\"_blank\" rel=\"noopener\">wills<\/a><\/strong>, <strong><a href=\"https:\/\/www.quebec.ca\/en\/justice-and-civil-status\/legal-protection\/protection-mandate\" target=\"_blank\" rel=\"noopener\">protection mandates<\/a><\/strong> or <strong><a href=\"https:\/\/www.quebec.ca\/en\/health\/health-system-and-services\/end-of-life-care\/advance-medical-directives\" target=\"_blank\" rel=\"noopener\">advance medical directives<\/a><\/strong>) early in the palliative or end-of-life trajectory. Navigating this stage successfully calls for active, compassionate guidance from health and social services professionals.  <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_13-popup-layout-27929\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_14 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_18\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"diagnostic\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_18 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_23 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_33 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_61 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform:uppercase;\"><strong>Diagnosis and prognosis<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_14 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p><span data-contrast=\"auto\">A diagnosis of incurable illness doesn\u2019t necessarily come with a clear end-of-life prognosis. This is often the case with conditions that develop gradually and unpredictably, such as neurocognitive disorders, heart and lung diseases, and age-related disability.  <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">Conversely, some diseases \u2014 for example, advanced-stage cancers \u2014 follow a more predictable course, making it possible to establish an end-of-life prognosis. This can help direct the care recipient and caregiver toward palliative care at an earlier stage  <\/span> <strong><a class=\"integration-approche-palliative\" href=\"#\">(see Integrating a palliative approach to care),<\/a><\/strong> thereby affording them more time to prepare for what lies ahead (19).<\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_62 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span data-contrast=\"auto\">With or without an end-of-life prognosis, a diagnosis of serious or incurable illness marks a pivotal shift in the caregiving trajectory. Even when caregiving is well established \u2014 for example, when it has been ongoing for months or years \u2014 such a shift can profoundly transform the caregiver\u2019s role. The illness takes on new significance as the caregiver moves beyond providing day-to-day care to navigating a condition that will progressively change until the final stages of life (20, 21).  <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">A serious diagnosis is often experienced as a major shock, which some have likened to \u201ca slap in the face\u201d (22, p. 80). The prospect of their loved one\u2019s death may thrust caregivers into a state of deep uncertainty marked by the loss of hope for recovery, a struggle to make sense of what is happening, and an inability to envision the future (4). Beyond the practical need to organize care and support, this moment often prompts a profound reflection on death (22).   <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">Lastly, the way in which a diagnosis is relayed can have a major impact on the caregiving trajectory (15, 23, 24, 25). A diagnosis communicated abruptly, with little information or guidance, can leave care recipients and caregivers without a clear understanding of the implications or what to expect (24, 25). <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_15 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Yeah. So, it\u2019s kind of like a catch 22, but the fact of like no one gives you an answer about anything, or like, the fact that things aren\u2019t clearly communicated, like, in terms of expectations and goals and whatever for you, like it\u2019s just hard, you know? <br \/><strong>Caregiver (cited in 4)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_63 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>The start of a grieving process<\/strong><\/h3>\n<p><span data-contrast=\"none\">A diagnosis of a serious and incurable illness marks a major turning point in the caregiving trajectory. For many caregivers, it signals the start of a grief process that involves grieving the loss of the person they once knew, as well as letting go of any hope for a cure (9, 21). Some must also grapple with the realization that the future they had once imagined with their loved one may never come to pass. That realization is often accompanied by uncertainty, bewilderment, and difficulty envisioning what lies ahead as the illness gradually transforms the relationship (4, 21). Diagnosis can therefore initiate a process of redefining the bonds between the caregiver and care recipient as they adapt to the prospect of eventual loss (22, 30).   <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">In some situations, years may elapse between the initial diagnosis and death, allowing caregivers to prepare for the loss of their loved one (9). However, some illnesses progress rapidly, leaving little opportunity to get ready for the end of life (24).  <\/span><span data-ccp-props=\"{\"335551550\":6,\"335551620\":6}\"> <\/span><\/p>\n<\/div>\n<div class=\"et_pb_text_64 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><\/div>\n<\/div>\n\n<div class=\"et_pb_text_65 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\">\n<div class=\"et_pb_blurb_16 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs upon receiving the diagnosis<\/h3><div class=\"et_pb_blurb_description\"><h4 style=\"font-size: 18px; margin-top: 10px;\"><strong>Information on the care recipient\u2019s illness or incapacity<\/strong><\/h4>\n<p>Receiving a diagnosis of serious illness does not always imply immediate access to the information needed to understand the disease. Caregivers may struggle to get answers to their questions (4, 24), with many reporting having to search online or make multiple phone calls to obtain the information they need. <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\">What can we expect? How will it all unfold? How can I plan for the symptoms? [Free translation]<br \/>\n<strong>Caregiver of a partner (cited in 34) <\/strong><\/p>\n<p>Being able to better understand the care recipient\u2019s health status, disease progression, and expected changes in autonomy can help caregivers prepare for the realities of the illness, develop the skills and resources needed, and reduce the uncertainty that often characterizes this period (5, 24, 30). <\/p>\n<p>However, confidentiality requirements mean that professionals can share only such information as the care recipient has authorized them to disclose, limiting the details available to caregivers. In such cases, caregivers can still obtain general information about the illness and available services; where possible, they can also explain to their loved one why they wish to obtain the particulars about their health. Professionals, in turn, can use the care recipient\u2019s refusal to have their information disclosed as an opportunity to intervene, revisit consent throughout the course of care, and directing caregivers to support resources or a family peer-support worker (31).   <\/p>\n<h4 style=\"font-size: 18px;\"><strong>Information to support preparation for the end of life<\/strong><\/h4>\n<p>Even when an illness is diagnosed as incurable, caregivers may not fully recognize that their loved one will eventually die. Early access to information about the end-of-life process, ideally as of diagnosis, is crucial (11). Yet because many caregivers and their loved ones cannot or do not fully acknowledge the eventuality of death, end-of-life planning is rarely initiated during the early stages of illness \u2014 a lapse that may result in missing a critical window in which the care recipient still has the capacity to make decisions about their own care and treatment (5, 11).  <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 30px;\">If I\u2019d have had a session with&#8230; someone at the beginning, face to face, to say \u201cRight, your mum has been diagnosed; this is what you need to expect.\u201d But in a very gentle kind of&#8230; That would\u2019ve been brilliant&#8230; being ignorant isn\u2019t going to save you in the long term.<br \/>\n<strong>Caregiver of a parent with Alzheimer\u2019s (cited in 5)<\/strong><\/p>\n<p>Information on the end stages of life, when combined with transparent communication from the care team, can help caregivers prepare for the death of their loved one and initiate their own grieving process (5, 11).<\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_14-popup-layout-27940\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_15 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"planification-prealable-des-soins\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_19 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_24 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_34 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_66 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform:uppercase;\"><strong>Advance care planning<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_17 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p><strong><a href=\"https:\/\/www.advancecareplanning.ca\/\" target=\"_blank\" rel=\"noopener\">Advanced care planning (ACP)<\/a><\/strong>is a process of thinking about and anticipating decisions related to health and personal care. ACP allows care recipients to reflect on their values and preferences and consider the care they would like to receive \u2014 as well as the treatments or interventions they would refuse \u2014 should their state of health decline. In this process, they are very often joined by their caregivers. <\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_67 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Advance care planning can represent a pivotal step in the caregiving trajectory, particularly when the caregiver must make decisions on behalf of a loved one who has become incapacitated (32). It is especially relevant in the context of neurocognitive disorders like dementia or Alzheimer\u2019s, since it provides an opportunity to discuss issues related to healthcare, finances, legal matters, and end-of-life wishes while the care recipient still has capacity (33).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_18 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Early on, definitely talk to your loved one about their wishes so you, in your mind and your family, as far as you can all really get to understand, [S]o that, when they can\u2019t make their own decisions, which in dementia can be quite a long time before they die, make sure you know what their wishes generally are. Then I would say try and make sure you\u2019ve got that written down if you need to, as a family.  <br \/><strong>Caregiver of a partner (cited in 30)<\/strong> <\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_68 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Advance care planning can provide critical support to the caregivers of someone who has lost capacity, inasmuch as the care recipient\u2019s wishes and preferences have been considered beforehand. However, as the disease progresses, their preferences and wishes may evolve. ACP must therefore be seen as an ongoing process \u2014 one that is best initiated early in the trajectory \u2014 to ensure it remains aligned with changes in the situation (35, 36).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_69 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Advance medical directives<\/strong><\/h3>\n<p>Advance medical directives can be part of the broader ACP process. They are not specific to the palliative care context and can be completed by anyone aged 18 or older. They consist of recording, in a legal document, the wishes of a person who has capacity regarding the medical care they will agree or refuse to receive, should they lose the ability to provide consent (37).   <\/p>\n<p>However, because physicians are often unfamiliar with advance medical directives, they may not routinely check whether a directive is in place. To date, the advance medical directive framework has not functioned effectively, and its impact on the health and social services system has been virtually negligible, largely because it is rarely used by health professionals, and since few individuals have completed the process (39).  <\/p>\n<p>It is therefore important to maintain the discussion between care recipients, caregivers, and health professionals throughout the advance care planning process. Such conversations can help foster an evolving understanding of the person\u2019s wishes, values, and care preferences (39). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_70 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Level of care and cardiopulmonary resuscitation (CPR)<\/strong><\/h3>\n<p><strong><a href=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/10\/AH-744_DT9261_2016-01_S.pdf\" target=\"new\">The Quebec health system\u2019s levels of care and cardiopulmonary resuscitation form<\/a><\/strong> is designed to clarify the goals of care (i.e., prolonging life or ensuring comfort) as well as the interventions to be undertaken when the health of a person at the end of life deteriorates (40). The form is completed following a clinical assessment and discussions, and must be signed by a physician or specialized nurse practitioner. If the patient has lost capacity, this tool can allow their representatives to participate in discussions and decision-making about their care, based on the following four levels:  <\/p>\n<ul style=\"margin-bottom: 15px;\">\n<li>Prolong life through any means necessary<\/li>\n<li>Prolong life through limited care<\/li>\n<li>Prioritize comfort over prolonging life<\/li>\n<li>Ensure comfort only, without aiming to prolong life<\/li>\n<\/ul>\n<p>The form also records the choice made by the patient or their representative regarding whether or not to attempt cardiopulmonary resuscitation.<\/p>\n<p>Caregivers may be involved to varying degrees in this process, including participating in discussions, supporting decision-making, or acting as substitute decision-makers. The form therefore serves two purposes: affirming their place in the process, and helping them prepare for their role throughout the care trajectory.<\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_19 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">CAREGIVER NEEDS REGARDING ADVANCE MEDICAL DIRECTIVES<\/h3><div class=\"et_pb_blurb_description\"><p>While discussions about advance care planning, advance medical directives, and levels of care and cardiopulmonary resuscitation would ideally begin at diagnosis, a number of factors \u2014 including time constraints, insufficient training, and hesitancy on the part of professionals to broach these topics \u2014 can make it difficult to integrate such discussions into practice (41). Furthermore, caregivers may lack the health information needed to initiate these discussions, while the significant anxiety that end-of-life processes can trigger may further discourage and delay the conversation: <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\"> Well, picturing myself in all that \u2014 those things have always scared me. [Free translation]<br \/><strong>Caregiver (cited in 36) <\/strong><\/p>\n<p>Addressing advance medical directives can therefore constitute a significant emotional burden. Professionals can mitigate this by <strong>providing information to prompt and support discussions on the topic,<\/strong> thereby actively helping to ensure that all decisions are as well-informed as possible (36). <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_15-popup-layout-27946\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_16 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"demande-anticipee-aide\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_20 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_25 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_35 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_71 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Advance requests for medical assistance in dying<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_20 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>An advance request for medical assistance in dying (MAiD) allows a person diagnosed with a serious, incurable illness leading to incapacity \u2014 including Alzheimer\u2019s disease, dementia and other related conditions \u2014 to arrange for MAiD be provided in the future if they lose the capacity to consent (42). <\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_72 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The extent of caregiver involvement in MAiD depends on the stages that follow a diagnosis and the disease progression (43, 44). <\/p>\n<p>While it is generally the person receiving the care who first expresses interest in MAiD, their caregiver may be involved in the search for information about the process, as well as in finding a physician or specialized nurse practitioner to formally initiate the request. <\/p>\n<p>Caregivers may also be involved in completing the MAiD request form, which entails identifying the clinical manifestations that will trigger the implementation of MAiD after the person loses capacity. In this context, they may help their loved one specify the conditions that will prompt the administration of MAiD, encourage reflection, steer conversations, provide reminders, and so on. This stage can generate significant stress for caregivers, sparked by a sense of urgency to complete the request before their loved one can no longer provide their consent (43).   <\/p>\n<p>As part of the MAiD process, caregivers may be designated as trusted third parties by their loved one. In this capacity, they act primarily as a monitor, alerting the care team when the care recipient reaches the stage of incapacity and exhibits the symptoms described in their MAiD request (44). This role can elicit feelings of guilt, as some caregivers may feel they are indirectly contributing to their loved one\u2019s death by essentially \u201csounding the alarm\u201d (19). The result can be significant stress and emotional strain (43) \u2014 a burden that falls within a broader context where, in many cases, the caregiver already acts as an intermediary between the care recipient and care team.<\/p>\n<p>Advocating for their loved one can also place caregivers in delicate decision-making situations, particularly as the former\u2019s neurocognitive condition deteriorates (30, 32). It is therefore essential that support for caregivers be integrated into the care continuum to ensure they are well prepared for these responsibilities when the time comes, and not left to face them on their own.      <\/p>\n<p>Should the request result in the provision of MAiD, the caregiver\u2019s role at this stage is more limited: they play no direct part in assessing the care recipient\u2019s health, do not decide on the timing of the procedure, and do not have the authority to delay or cancel the request (44). However, they may be consulted regarding preliminary arrangements, including the date and time MAiD will be administered.  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_21 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>Advance requests for MAiD are relatively new, and the landscape remains a minefield of conflicting federal and provincial laws, ethical dilemmas and the unpredictable nature of terminal symptoms. As a result, very few of such requests have actually led to an assisted death. Navigating this complex and frequently murky process places caregivers under immense strain, leaving them to shoulder significant responsibilities as they parse clinical and emotional uncertainties \u2014 all the while facing intense pressure to honour their loved one\u2019s final wishes.  <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_16-popup-layout-27952\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_17 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"aide-medicale-a-mourir\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_21 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_26 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_36 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_73 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Medical assistance in dying<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_74 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Medical assistance in dying (MAiD) involves the administration of medication by a physician or specialized nurse practitioner (SNP), at the person\u2019s request, with the aim of causing death and relieving suffering (172). The request may be made <strong><a href=\"https:\/\/aqdmd.org\/en\/preparing-for-maid\/\" target=\"_blank\" rel=\"noopener\">contemporaneously,<\/a><\/strong> with a view to receiving MAiD in the short term, or in <strong><a href=\"https:\/\/aqdmd.org\/en\/advance-request-for-medical-assistance-in-dying\/\" target=\"_blank\" rel=\"noopener\">advance.<\/a><\/strong> <\/p>\n<p>It is important to note that making a request for MAiD does not guarantee its provision (113). For example, a person who has requested MAiD might die naturally before it can be administered, or, in the case of a contemporaneous request, may have lost the ability to express consent by the time the medication is to be administered (114).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_75 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The decision to request MAiD can elicit a strong emotional response among the patient\u2019s family and friends, particularly their caregivers. This decision may conflict with the caregivers\u2019 own values \u200b\u200band beliefs, or run counter to their desire to keep their loved one with them for as long as possible (3, 84).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_22 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>At first, I took it really badly. I flat-out refused, and I made it very clear that I was against his decision [to use MAiD]. [Free translation] <br \/><strong>Caregiver (cited in 115)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_76 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>While MAiD is generally accepted, certain taboos persist. Not all caregivers are comfortable speaking openly about their experience, sometimes for fear of being judged or misunderstood:  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_23 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>We come from a Catholic family so it\u2019s like suicide&#8230; we don\u2019t want to hear everyone\u2019s opinion on it at this time. If it ever comes out, I\u2019m not embarrassed by it, I\u2019m not ashamed of it, I know that this was something that dad wanted. And if asked directly, I will tell you, but it&#8217;s not something I\u2019m going to go out and say.   <br \/><strong>Caregiver (cited in 116) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_77 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>However, the opposite is true for some caregivers, who are quite open to discussing their experience (116), pointing out that MAiD puts an end to the care recipient\u2019s suffering and lets them die with dignity (116). Some also feel it gives them a sense of control over a highly emotionally charged situation (116). Crucially, knowing the precise time of death allows them to honour their loved one\u2019s final wishes, schedule visits from family and friends, cherish those last moments, and say goodbye:   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_24 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I\u2019m grateful that we were able to have an end date that allowed us to plan our leave-taking. Talk about it, rather than avoiding it. To be more comfortable with the notion of dying and separation. Having a date allowed us to do all of those things&#8230; [W]e know the day, we know the time, we know the route, so we can just relax and plan our last few days together.     <br \/><strong>Caregiver (cited in 116)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_78 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Nonetheless, even if they are well prepared and support their loved one\u2019s decision to receive MAiD, caregivers may find that the process, from the initial request until death, unfolded very quickly or even felt rushed (17, 115). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_25 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs in relation to maid<\/h3><div class=\"et_pb_blurb_description\"><p>To navigate this process, caregivers need:<\/p>\n<ul>\n<li><strong>Ongoing support and access to reliable, comprehensive information<\/strong> to help them understand the stages of the process and better cope with the pace of how it unfolds. Note that this information must always be subject to the consent of the person receiving care (17).<\/li>\n<li><strong>The care team\u2019s presence and support<\/strong> throughout the process, including after their loved one\u2019s death (116).<\/li>\n<li><strong>Assistance with holding end-of-life discussions<\/strong> with their loved one (116).<\/li>\n<li>Assurance that MAiD is coordinated and administered in such a way as to <strong>respect their privacy<\/strong> (114).<\/li>\n<\/ul>\n<p>The support received by caregivers throughout the process can be inconsistent. Some caregivers express gratitude toward the care team for their involvement and expertise (114, 116): <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 30px;\">We found it extraordinary \u2014 and the support, my goodness! We were so well looked after&#8230; We just happened upon an extraordinary doctor, some extraordinary people who were used to supporting people through MAiD. [Free translation]  <br \/><strong>Caregiver (cited in 114)<\/strong><\/p>\n<p>Others underscore gaps in communication and a lack of transparency within the team (116). Indeed, in some cases, it is the caregivers themselves who must initiate the conversation about MAiD (17): <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 0px;\">I was the one who brought it up at the hospital because we were given absolutely no choices, options, or hope. <br \/><strong>Caregiver (cited in 117)<\/strong><\/p>\n<p>Additionally, some caregivers have remarked on uneasiness among care team members regarding their knowledge of the MAiD process and its administration (114). For instance, a physician\u2019s lack of familiarity with the procedure can disrupt the experience for those present, undermining the sense of trust and safety that is yet so vital at this crucial moment (114). <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 30px;\"><\/p>\n<div style=\"margin-left:50px;\">They told us this, too, two days beforehand: \u201cThe doctor performing the procedure is young, it\u2019s her first time doing one&#8230; We\u2019ll need to be vigilant and give her a lot of support.\u201d \u201cWell, it\u2019s our first time, too!\u201d That\u2019s what we said! And there won\u2019t be a second time, either! So, we found that pretty strange. I mean, it wasn\u2019t really our job to support the doctor; that was up to them [laughs]. [Free translation]   <br \/><strong>Caregiver (cited in 114)<\/strong><\/div>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_17-popup-layout-28007\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_18 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_17\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"integration-approche-palliative\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_22 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_27 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_37 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_79 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Integrating a palliative approach to care<\/strong><\/h2>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_26 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>A palliative approach is comprehensive, continuous, personalized, and holistic, focused on improving quality of life for individuals with serious or incurable illnesses or advanced frailty \u2014 and equally for their families and loved ones (45). Misconceptions persist that palliative care is limited to the final days or weeks of life. In reality, it can be woven into the trajectory early on, evolving alongside the needs of both the care recipient and their loved ones. In this sense, it is an integral part of the care continuum and can be quietly introduced by frontline professionals across a range of settings, without requiring formal labels or specialized resources (46).   <\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_80 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Implemented at time of diagnosis and throughout the course of the illness or incapacity, palliative care can be delivered at home, in hospitals, in long-term care facilities, or through community-based services to ensure continuity of care for patients and their families (37, 47). <\/p>\n<p><strong>A palliative approach aims to: <\/strong><\/p>\n<ul>\n<li>\n<p>Manage pain, complications, and unexpected symptoms by providing support to the care recipient and their caregivers (48, 49, 50).<\/p>\n<\/li>\n<li>\n<p>Offer caregivers support, psychosocial guidance, information and respite, including during the post-death bereavement process (48).<\/p>\n<\/li>\n<li>\n<p>Better prepare the patient and their loved ones for the end of life (51).<\/p>\n<\/li>\n<li>\n<p>Facilitate dialogue regarding any decisions and wishes that may need to be addressed throughout the trajectory (18).<\/p>\n<\/li>\n<li>\n<p>Ensure better continuity of care by coordinating services and support in line with the evolving needs of the care recipient and their caregivers (4).<\/p>\n<\/li>\n<\/ul>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_81 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>In the caregiving trajectory, early access to palliative care ensures both care recipients and caregivers a better quality of life and a smoother experience as the disease progresses (23, 53). All too often, however, a palliative approach is overlooked or introduced only at the very end<a class=\"absence-integration-approche-palliative\" href=\"#\"> <strong>(see Absence of a palliative approach to care).<\/strong><\/a>  <\/p>\n<p>Within this framework, caregivers fulfil a dual role: they are vital care partners supporting their loved ones, but they are also recipients of services and support themselves (55). This overlap can create tension, particularly when a caregiver\u2019s firsthand knowledge clashes with care team recommendations. To avoid conflict during critical moments, the caregiver\u2019s distinct role must be clearly understood and acknowledged from the outset (56) <strong style=\"font-size: 15px;\"><a class=\"communication\" href=\"#\">(see Communication and partnership with care teams)<g id=\"gid_2\">.<\/g><\/a><\/strong>  <\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_82 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>The role of professionals in integrating a palliative approach<\/strong><\/h3>\n<h4 style=\"font-size: 18px; font-weight: bold; margin-top: 10px;\">Helping caregivers understand the palliative approach<\/h4>\n<p>A clear understanding of the palliative approach and its true purpose helps reassure caregivers and alleviate their fears (48). However, some professionals deliver palliative-style interventions without explicitly labeling them as such, possibly for fear of upsetting the family or inadvertently diminishing hopes for recovery. Unfortunately, this silence only fuels apprehension. In particular, it reinforces the misconception that a palliative approach spells imminent death, making the eventual transition much harder. Professionals should instead proactively offer reassurance by explaining the key goals of palliative care: improving quality of life; and connecting patients and their families with valuable support resources (48).   <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold; margin-top: 10px;\">Fostering early integration of a palliative approach<\/h4>\n<p>All too often, the integration of a palliative approach is delayed, if not entirely absent. This stems not only from a lack of professional training, but also from the lingering discomfort, fears, and taboos that still surround the topic (33, 58). In this environment, caregivers themselves frequently have to request palliative care for their loved one. Making this request, however, can bring a profound sense of guilt, as caregivers may feel uniquely responsible for setting in motion the final stages of their loved one\u2019s life (19).   <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold; margin-top: 10px;\">Support throughout the trajectory<\/h4>\n<p>Deep disparities in the availability of palliative services mean that caregivers often receive inconsistent, insufficient support across the care path (33, 59). Even when a palliative approach is available, a lack of seamless integration can make it more difficult to access specific kinds of support (59).  <\/p>\n<p>Conversely, a well-structured palliative framework provides support to caregivers from start to finish. This continuous backing empowers them choose their own level of involvement, prioritize self-care, manage stress, burnout, and distress, and feel genuinely equipped to navigate the realities of caregiving (59, p. 380; 60).  <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold; margin-top: 10px;\">Keeping the lines of communication open<\/h4>\n<p>Early access to palliative care helps unlock dialogue about highly sensitive topics all the sooner, paving the way for advance care planning <strong><a class=\"planification-prealable-des-soins\" href=\"#\">(see Advanced care planning).<\/a><\/strong><\/p>\n<p>Moreover, transparent communication from health professionals ensures caregivers feel valued and included in treatment decisions, giving them a chance to voice their concerns with the care team and establish their own personal limits (6, 34). <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold; margin-top: 10px;\">Fostering seamless home care coordination<\/h4>\n<p>Given the immense commitment entailed in providing palliative care at home, a properly integrated approach ensures that families don\u2019t have to hunt for the support they need. By bringing together an array of partners \u2014 including pharmacists, physicians, nurses, and community workers \u2014 this model streamlines coordination, anticipates needs early on, and prevents complex, distressing issues from arising (4). <\/p>\n<\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><style id=\"el-divi-el_modal_popup_18-popup-layout-27956\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_19 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_19\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"absence-integration-approche-palliative\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_23 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_28 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_38 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_83 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Absence of a palliative approach to care<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_84 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>A diagnosis of incurable illness does not imply that a palliative approach will be offered as a matter of course, or even discussed (24) <strong><a class=\"integration-approche-palliative\" href=\"#\">(see Integrating a palliative approach to care).<\/a><\/strong> Indeed, data from Quebec showing that many people at the end of life continue to receive only intensive curative care \u2014 including through emergency department visits and ICU admissions \u2014 reflect the delayed integration of palliative care into the trajectory (64). <\/p>\n<p><strong>The lack of a palliative approach may:<\/strong><\/p>\n<ul>\n<li>Prevent caregivers and the care recipient from accessing crucial information about disease progression and the available treatments. <\/li>\n<li>Limit access to the appropriate support.<\/li>\n<li>Make transitions in care more difficult.<\/li>\n<li>Contribute to rushed and uninformed decision-making. <\/li>\n<li>Focus attention solely on the care recipient, with the emphasis on medical care alone (17, 32).<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><strong>Many factors contribute to the absence or delay of a palliative approach:<\/strong><\/p>\n<ul>\n<li>People whose incapacities are related to chronic illness or aging often access these services only after their health has severely deteriorated and their daily functioning has sharply declined (66, 67, 68) <a class=\"type-incapacite\" href=\"#\"><strong>(see Type of illness or incapacity of the person receiving care).<\/strong><\/a><\/li>\n<li>The erratic course of certain illnesses makes it difficult to establish a clear prognosis, which in turn complicates the integration of a palliative approach (5, 67, 68, 69, 70).<\/li>\n<li>Negative perceptions that equate palliative care with the loss of hope, the cessation of treatment, and death can stymie vital conversations on this topic (48, 58, 71). <\/li>\n<li>Staff and resource deficits within the health and social services system are a major roadblock to accessing specialized end-of-life care (69). <\/li>\n<li>A widespread lack of frontline training in palliative approaches delays the early identification of individuals who could benefit from this care (183, 184). <\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_19-popup-layout-28063\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_20 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_20\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"periode-intensification-soutien-apporte\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_24 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_29 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_39 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_85 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Periods of intensified support<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_86 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Periods of intensified support occur when a care recipient\u2019s physical or mental decline significantly increases caregiving demands (24, 89). These periods can require caregivers to reconfigure their role, and may also signal that the end of life is near.  <\/p>\n<p>Physical impairments \u2014 including difficulties walking, dressing, bathing, eating, speaking, or breathing independently \u2014 can substantially alter the nature and intensity of caregiving (90). As care needs increase, caregivers may feel increasingly overwhelmed, especially when life-sustaining technologies or more intensive forms of support are required. Much of this distress may stem from the pressure of feeling responsible for their loved one\u2019s well-being at such a critical stage in their illness (83, 91).  <\/p>\n<p>Physical decline is not the only challenge. Changes in behaviour can gradually affect how the care recipient expresses themselves, as well as how others perceive them, obscuring or even eclipsing their identity and individuality. For caregivers, these changes can be stressful and cause significant suffering while adding to burden of care (9, 21, 92). Communication with the care recipient can also become increasingly difficult as their health deteriorates:   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_27 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Communicating is the hard part. Sometimes he wants to talk to me, but I can\u2019t understand him. Or else he says things that make absolutely no sense. [Free translation]  <br \/><strong>Caregiver (cited in 21)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_87 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>A trajectory focused on caregiving for people with Alzheimer\u2019s disease or dementia is currently being prepared and is due for release in 2027.<\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_88 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Confusion and strong emotions<\/strong><\/h3>\n<p>Seeing the care recipient\u2019s autonomy wane can be heartbreaking. For spouses and partners, these emotional challenges are often compounded by the altered nature of the couple\u2019s relationship.  <\/p>\n<\/div>\n<div class=\"et_pb_blurb_28 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>The person I miss the most is my friend. He can no longer be my friend, because . . . How can I put it? [crying] You need a certain closeness, a bond that we used to share but don\u2019t anymore [due to the illness]. [Free translation]   <br \/><strong>Caregiver (cited in 75) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_89 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregivers may oscillate between discouragement and despair as they witness their loved one\u2019s decline and grapple with the imminence of death. In some cases, they may even wish for death to come quickly: <\/p>\n<\/div>\n<div class=\"et_pb_blurb_29 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>It\u2019s not going to improve . . . it can only go one way, it can only get worse. <br \/><strong>Caregiver (cited in 86)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_90 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Witnessing their loved one\u2019s suffering can also leave caregivers feeling powerless, guilty, and distressed (11, 83, 91).<\/p>\n<\/div>\n<div class=\"et_pb_text_91 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\">\n<div class=\"et_pb_blurb_30 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>His legs were like that, and one day I was there and they were changing him and they had him in the hoist and I looked at his body and he had nothing on and I just almost threw up. \u201cOh my God, I don\u2019t believe it.\u201d His thighs were just like this, like sticks. The hips, you know, it was just incredible, and to think that the heart inside was still keeping pumping and keeping him alive, it\u2019s just amazing that it did.   <br \/><strong>Caregiver of a partner (cited in 11) <\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_92 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Despite doing everything they can to support their loved one, caregivers can find this situation extremely difficult, even when care is going well (9, 11). <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_text_93 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Providing intensive care at home<\/strong><\/h3>\n<p>In many cases, a major loss of autonomy occurs while the care recipient is living at home. During this period, the demands of caregiving tend to increase as the end of life approaches (3, 75, 93).  <\/p>\n<p>The growing needs of a person receiving care at home can raise concerns for caregivers: <\/p>\n<ul>\n<li><strong>Medical needs:<\/strong> Caregivers frequently worry about their capacity to handle increasingly complex tasks \u2014 for example, administering medication and operating or monitoring medical equipment \u2014 as well as the toll these responsibilities might extract on their own well-being. <\/li>\n<\/ul>\n<\/div>\n<div class=\"et_pb_blurb_31 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I [can\u2019t] get any sleep. Because you can hear how he breathes . . . I think that I&#8217;m up at 2:30 every morning. And I think if there was somebody else here to take care of that, and I could sleep through.   <br \/><strong>Caregiver (cited in 4)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_text_94 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><ul style=\"margin-bottom: 15px;\">\n<li><strong>Medication management:<\/strong> Administering and managing medication adds a heavy layer of responsibility to an already taxing routine. The constant vigilance required, particularly during dosage modifications and care transitions, can leave caregivers physically and emotionally drained, in some cases leading to burnout (63).  <\/li>\n<li><strong>Logistical demands:<\/strong> As the patient\u2019s autonomy declines, the burden of planning care and organizing treatment increases. Caregivers must dedicate significant energy to arranging transportation, scheduling medical appointments and follow-ups, and overseeing transitions between different care settings. <\/li>\n<\/ul>\n<p>Faced with these burgeoning requirements, some caregivers describe themselves as being in \u201csurvival mode,\u201d feeling trapped by the demands of supporting their loved one at home. Loss of autonomy can require caregivers to remain physically present around the clock; some are reluctant to leave the house at all, either because they want to spend as much time as possible with their loved one (7) or because they fear bringing home a virus that could further compromise their health (3). This reluctance may be even greater when a care recipient\u2019s survival depends on medical equipment, as caregivers may be unwilling to leave them without supervision (91).    <\/p>\n<\/div>\n<div class=\"et_pb_blurb_32 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[I]t\u2019s strange because sometimes we think that having someone there for the night would be a help \u2014 would give us a break. But at the same time, we\u2019re so deeply involved that we don\u2019t want to miss a thing; we feel like we\u2019re the only ones who can do it. . . . I just feel like I\u2019m the best person [for the job]. [Free translation]<br \/><strong>Caregiver (cited in 7)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_text_95 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>Specific concerns for employed caregivers <\/strong><\/h3>\n<p>Employed caregivers often face a difficult decision when their loved one first loses autonomy: should they take leave to provide support and coordinate care as needed, or save it for the later stages of the illness, including the final moments of life? In many cases, they exhaust their available leave early on; furthermore, they may be unable to access employment insurance benefits <a class=\"ressources-et-soutien\" href=\"#\" style=\"font-weight: bold;\">(see Caregiver resources and support).<\/a> This can result in having to continue working as their loved one nears the end of life (9). Meanwhile, as the demands of caregiving rise over time, some caregivers experience professional burnout and are ultimately forced to take sick leave (9, 24, 85).<\/p>\n<p>Employed caregivers can thus find themselves in an increasingly precarious financial situation, facing reduced income alongside mounting expenses \u2014 for example, costs related to transportation, home modifications, or medical equipment rentals. These financial pressures can further complicate an already stressful situation (4, 9, 24, 85).   <\/p>\n<p>Employed caregivers can thus find themselves in an increasingly precarious financial situation, facing reduced income alongside mounting expenses \u2014 for example, costs related to transportation, home modifications, or medical equipment rentals. These financial pressures can further complicate an already stressful situation (4, 9, 24, 85).<\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_33 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs as autonomy declines <\/h3><div class=\"et_pb_blurb_description\"><p>Establishing and sustaining a resilient partnership between caregivers and the care team across the trajectory depends on certain foundational pillars.<\/p>\n<ul>\n<li><strong>Communication needs<\/strong><br \/>Taboos surrounding the progression of the illness toward death can hinder communication between patients and health professionals, leaving caregivers caught in the middle. Regular dialogue among all parties can facilitate discussion and support informed, shared, and advance decision-making (9, 60).  <\/li>\n<li><strong>Information needs<\/strong><br \/>Access to information as of diagnosis can help prepare caregivers for potential losses of autonomy (4, 30).<\/li>\n<\/ul>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\">And that\u2019s very\u2026 the fact that you permanently don\u2019t know what the situation is, or what you should do or whether you\u2019re doing the right thing. Right, I think that was actually the hardest part. <br \/><strong>Caregiver (cited in 9)<\/strong><strong><\/strong><\/p>\n<p><strong><\/strong><\/p>\n<ul>\n<li><strong>Support through the decline<\/strong><br \/>Many caregivers are unable to access resources to help them cope with their loved one\u2019s physical or cognitive decline, whether because appropriate resources are unavailable, or because they are unaware that these exist. Even when support is available, caregivers may be too overwhelmed by their responsibilities to make use of it (62).  <\/li>\n<li><strong>Bereavement support<\/strong><br \/>Witnessing the loss of physical and\/or cognitive autonomy in a loved one can bring about successive or layered experiences of grief for caregivers, compounding the burden they already carry and significantly affecting their mental health (24). This grief can be difficult to perceive at first, with its full impact emerging only later on. Recognizing and addressing caregiver grief before the care recipient\u2019s death is essential to providing appropriate support and protecting caregivers\u2019 quality of life throughout the trajectory (13).    <\/li>\n<\/ul>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_20-popup-layout-27976\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_21 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_21\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"soin-de-fin-de-vie\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_25 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_30 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_40 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_96 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>End-of-life care<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_34 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>End-of-life care refers to the range of care options available during the advanced phases of illness or age-related loss of autonomy (99). These may include comfort care, continuous palliative sedation, and the administration of MAiD (advance or contemporaneous). End-of-life care can be delivered in a range of settings: hospital, hospice, CHSLD, at home, or in any other location chosen by the person at the end of life and their loved ones (5). Caregiver involvement will vary according to the chosen care pathway and setting. As well as supporting the patient\u2019s symptom management, end-of-life care can also support caregivers by helping them prepare for the final stages of their loved one\u2019s life and the eventual death.    <\/p>\n<p>When a palliative approach is fragmented or entirely lacking, the transition to end-of-life care can be particularly distressing for both caregivers and care recipients. A proactive palliative approach, on the other hand, allows critical questions to be addressed at multiple points along the caregiving trajectory. Guided by professionals, these conversations can help prepare caregivers and care recipients for the choices they will face as the disease progresses. Without such preparation, the transition to end-of-life care may be marked by uncertainty and a lack of readiness for the decisions and challenges that lie ahead (100).   <\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_97 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregivers are often central to end-of-life care, particularly because of the decision-making needs that arise at this pivotal juncture \u2014 a role that becomes even more critical when a loved one loses the capacity to make decisions for themselves (30). Caregivers may be called upon to participate in discussions with the care team about such sensitive matters as whether to continue, adjust or withdraw treatment (35). This requires a clear grasp of the implications of each proposed option; it also implies, not just a familiarity with their loved one\u2019s wishes, but also the ability to articulate and advocate for those wishes, even when they had not been clearly expressed verbally or in writing. The caregivers\u2019 role in decision-making therefore requires them to reconcile their personal values with their understanding of the medical situation and their loved one\u2019s presumed wishes, all within an emotionally charged context (35).     <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_98 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>At-home end-of-life care<\/strong><\/h3>\n<p>When end-of-life care takes place at home, managing medical equipment, organizing the return home, and coordinating different services can increase the complexity of care, requiring caregivers to assume a role that is at once technical, logistical and medical (5, 101). The resulting increase in responsibilities may heighten their stress and fatigue (98, 102).  <\/p>\n<p>A multidisciplinary approach involving a range of professionals and community organizations is often required. Such a model necessitates significant coordination among caregivers and the various stakeholders involved (103). The importance of coordination is particularly evident in the home setting, where gaps in communication can lead to misunderstandings between professionals and caregivers as to who is responsible for what, as well as disruptions in service (104).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_35 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs during end-of-life care<\/h3><div class=\"et_pb_blurb_description\"><p>Caregivers have reported feeling shunted aside, locked out of clinical decisions or left in the dark regarding crucial signs and symptoms exhibited by their loved one (8). Keeping them informed requires that caregivers <strong>be recognized, consulted, and involved at every stage of the clinical process,<\/strong> backing this engagement with consistently clear explanations (8). Crucially, however, information needs are not universal: some caregivers explicitly state they do not wish to be briefed on symptom management or the granular details of end-of-life care (8). Practitioners must therefore tailor their communication style to the expressed wishes of patients and their families, respecting the emotional capacities, preferences and personal limits of all parties involved.    <\/p>\n<p>This delicate balance is of utmost importance when caregivers are asked to weigh in on withdrawing treatment or discontinuing life-sustaining measures. Empathetic, highly structured guidance from the care team is essential to foster shared decision-making at these critical junctures. Without such institutional scaffolding, leaving families to face such heartbreaking choices in isolation can impose an extraordinary emotional burden.   <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 60px;\">I find that\u2019s putting a huge responsibility on the family&#8230; I don\u2019t need to have the fact that I pulled the plug on my conscience, too. [Free translation] <br \/><strong>Caregiver (cited in 23)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_21-popup-layout-27988\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_22 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"soin-de-confort\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_26 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_31 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_41 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_99 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Comfort care <\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_100 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Comfort care focuses primarily on relieving pain and easing symptoms with the aim of promoting the care recipient\u2019s well-being and dignity during their final stages of life. It includes symptom management, assistance with hygiene and personal comfort, and psychological, social, and spiritual support tailored to the needs of the person receiving care and their caregivers (36, 104). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_101 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The transition to comfort care can be confronting for caregivers, as it may be perceived as signalling the end of treatment and a form of \u2018letting go\u2019 of their loved one. It is therefore essential to reassure families that transitioning to comfort care does not mean their loved one is being abandoned by the health and social services system (106).  <\/p>\n<p>In many cases, comfort care allows caregivers to remain at the bedside continuously until death. However, unlike medical assistance in dying (MAiD), where the timeline is established in advance, the duration of comfort care is fundamentally unpredictable. Caregivers may therefore find themselves maintaining a bedside vigil for an indeterminate period. While this sustained presence is almost always willingly undertaken, it can severely interfere with their professional and financial stability, forcing them to scale back working hours, take extended leaves, or exit the workforce entirely (3, 8, 85).   <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_22-popup-layout-27994\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_23 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"sedation-palliative-contiue\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_27 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_32 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_42 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_102 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Continuous palliative sedation<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_103 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong><a href=\"https:\/\/www.quebec.ca\/sante\/systeme-et-services-de-sante\/soins-de-fin-de-vie\/soins-palliatifs\/demarche\" target=\"_blank\" rel=\"noopener\">Continuous palliative sedation<\/a><\/strong> consists of administering medication to a person at the end of life, at their request or the request of a loved one, with the aim of relieving their suffering by rendering them continuously unconscious until death (133).<\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_104 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregivers frequently play a central role in this context, particularly when they are the ones to initiate discussions about palliative sedation with the medical team (108). Furthermore, unlike MAiD, which can only be requested by the patient themselves, a request for continuous palliative sedation can be initiated by a caregiver or substitute decision-maker (99). Still, carrying the responsibility for decisions surrounding the administration of sedation can cause families deep emotional distress (108).   <\/p>\n<p>The distinction between continuous palliative sedation and MAiD is not always entirely clear to caregivers (110, 111). MAiD is intended to end a person\u2019s life and is administered strictly at their request, whereas continuous palliative sedation aims to relieve severe symptoms by lowering the patient\u2019s level of consciousness. Because both interventions occur in the context of severe suffering and may be associated with a hastening of death, they are sometimes conflated. Once adequately informed, however, caregivers generally recognize the necessity and comforting benefits of sedation, both for their loved one and for themselves (112).    <\/p>\n<p>Beyond the weight of the initial decision, caregivers may experience heightened anxiety before, during and after sedation is administered, along with inner turmoil and physical exhaustion. The reasons for this can include: <\/p>\n<ul>\n<li>Inner conflict (wishing to see their loved one\u2019s suffering end versus wanting to enjoy their presence for as long as possible).<\/li>\n<li>The reality that they will no longer be able to interact with their loved one once sedation has been administered.<\/li>\n<li>The prolonged and unpredictable duration of the sedation.<\/li>\n<li>The time spent, often without sleep, at their loved one\u2019s bedside, which can extend for days (108, 112).<\/li>\n<\/ul>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_36 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs in relation to continuous palliative sedation<\/h3><div class=\"et_pb_blurb_description\"><p>Caregivers need access to relevant, personalized information regarding their loved one\u2019s comfort and the technical progression of the sedation process. It is essential that this information be readily available. However, clinical updates alone are not enough; caregivers also depend on professional guidance and support to help them understand the process, inform their choices and work through the psychological weight of the experience (108).  <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_23-popup-layout-27998\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_24 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"aucun-soin-de-fin-de-vie\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_28 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_33 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_43 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_105 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Absence of end-of-life care<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_106 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Whether driven by personal preference, a lack of information, or a stark absence of resources, some people reach the end of life without ever receiving formal palliative care (19). This absence can have serious repercussions for caregivers, who may find themselves bearing the weight of a loved one\u2019s final days completely alone. Without professional support, these caregivers are often left in the dark as to what to expect, ill-equipped to make critical choices, and defenseless against the emotional upheaval surrounding their loved one\u2019s decline and death (9).   <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_24-popup-layout-28011\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_25 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"deces-de-la-personne-aidee\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_29 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_34 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_44 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_107 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Death of the care recipient<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_108 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The death of the care recipient is a significant milestone in the caregiving trajectory. Though it doesn\u2019t necessarily mark the end of the caregiver\u2019s duties toward their loved one \u2014 tasks such as arranging the funeral, carrying out final wishes, sorting through personal belongings, and handling the will may still be part of their role (125) \u2014 their burden may decrease substantially as the need to provide direct medical and emotional support comes to an end (9).  <\/p>\n<p>Caregivers are not always prepared for the shock of death, nor for the intense and sometimes conflicting emotions it may bring, even when they knew it was imminent (3, 9, 67, 114, 123). At the same time, death may also elicit the profound relief of knowing that a loved one\u2019s suffering has finally ended:  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_37 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>It was also a great relief [the person] dying because it was so hard seeing her go through all of those things that she went through and have this disease completely eat her away. <br \/><strong>Caregiver (cited in 11)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_109 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Although grieving is a lengthy process that may have begun earlier in the trajectory, caregivers often identify death as the start of their bereavement: a time of loss and sadness that is often compounded by accumulated fatigue from the demands of caregiving in the weeks or even months beforehand (9). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_110 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>Death in the absence of a palliative approach to care<\/strong><\/h3>\n<p>The absence of a palliative approach to care can severely compound the trauma experienced by caregivers when a loved one dies. Many report feeling abandoned, faced with a total lack of emotional and relational support from care teams \u2014 a failure that is most glaring in settings where palliative care is underdeveloped or insufficiently integrated, such as certain private seniors\u2019 residences (23). <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/09\/apostrophe.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 20px; padding-top: 10px;\">It was kind of a problem. When he passed away, we were in palliative care and it was really hard. The nurses kept shushing us \u2014 we\u2019re a really big family \u2014 so no one was speaking. Then the nurse said, \u201cI think some of you should leave.\u201d Like, zero empathy! [Free translation]   <br \/><strong>Caregiver (cited in 23)<\/strong><\/p>\n<p>Experiences of this kind starkly highlight the limitations of an approach focused primarily on the administrative or clinical aspects of death, at the expense of providing caregivers and other loved ones with emotional, relational and family support. <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_38 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs at the time of death<\/h3><div class=\"et_pb_blurb_description\"><p>Throughout the trajectory, clear and ongoing communication from professionals is vital to preparing caregivers for their loved one\u2019s final passing. Crucially, this preparation shapes their subsequent well-being, helping them absorb the blow of the loss and navigate the complex terrain of grief (128).  <\/p>\n<p><span data-contrast=\"none\">It is equally vital to respect caregivers\u2019 preferences in the immediate aftermath of death. For instance, some may choose to remain with their loved one\u2019s body for a time \u2014 a quiet window to reflect, say goodbye, and gradually accept the loss, humanizing a moment that can otherwise be swallowed up by logistical considerations (114, 128). Moments like this can anchor the grieving process, providing space to acknowledge the physical separation and more gently bridge the transition into bereavement and post-caregiving (113). Some caregivers may also wish to participate personally in final care, finding solace in removing needles and catheters or washing the body (128).    <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_25-popup-layout-28016\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_26 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"sortir-et-post-aidance\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_30 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_35 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_45 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_111 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Post-caregiving period<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_112 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Rather than marking a return to normalcy, the end of a caregiving role often signals a new period of emotional, personal, and day-to-day adjustment. The shift away from active caregiving can be a time of significant adaptation, with far-reaching effects on the caregiver\u2019s life. This is a time of dual loss: the loss of a loved one, and the loss of a role that, until then, may have occupied a central place in the caregiver\u2019s identity (130).   <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Bereavement<\/strong><\/h3>\n<p>Although grieving unfolds throughout the caregiving journey and intensifies at certain critical moments, the post-caregiving period can present its own distinct challenges. <\/p>\n<p>The intensity and duration of bereavement will vary radically from one caregiver to the next. For those who struggle to accept the finality of death, the weeks or months following a loss can trigger a profound emotional and psychological upheaval that refuses to lift (20).   <\/p>\n<p>This tumultuous period is often marked by an active sense of protest \u2014 a confluence of anger, confusion, guilt and a bitter sense of injustice.  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_39 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I do get upset and sad at times&#8230; but it\u2019s life, isn\u2019t it? You\u2019ve just got to get on with it. I feel guilty that I should have done more for him.   <br \/><strong>Caregiver (cited in 87)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_113 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>For some caregivers, making sense of the death and coming to terms with the permanence of the loss may involve looking for someone or something to blame, or trying to pinpoint a cause (20).  <\/p>\n<p>Most bereaved caregivers gradually enter a period of reorganization and adaptation that can span months or even years. As the pain of loss ebbs, they may start rediscovering pleasure and engaging in new activities or projects, slowly adjusting to life without their loved one and regaining a sense of balance (20). However, some remain frozen in their grief, unable to adapt without targeted professional intervention (5, 160, 161).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_114 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>As with the rest of the trajectory, factors specific to each individual and their circumstances \u2014 minority group membership, age, socioeconomic status, beliefs and spirituality, etc. \u2014 can influence the grieving process. For many caregivers, the stresses, challenges, and distress accumulated throughout the trajectory significantly affect their bereavement and ability to adapt to the loss, making the transition all the more challenging (24, 121, 131, 132). Professionals must therefore take these factors into account when providing support during the post-caregiving period.   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_115 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Reconfiguring the caregiver\u2019s role<\/strong><\/h3>\n<p>During active caregiving, the caregiver\u2019s life is largely structured around the needs of the dying individual, from hygiene and nutrition to emotional support and keeping vigil at the bedside. When death occurs, the sudden, total disappearance of this structure can leave caregivers profoundly disoriented (2, 124, 130, 135).  <\/p>\n<p>This commitment can become so all-encompassing that it leaves little room for anything else, overshadowing the caregiver\u2019s own desires, plans, or relationships (22).  <\/p>\n<p>Especially among women, the role can fuse entirely with personal identity (135). Death, therefore, marks a violent rupture with this sense of self. The post-caregiving period thus becomes a time of personal reorientation as caregivers slowly come to redefine who they are and find a new purpose (2, 135).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_40 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>It was an abrupt change. There was nothing. My whole life was, my whole identity, was caregiving. And then poof, it\u2019s over. It was a lot of nothing. There was nothing. But I needed the time, I needed the time to lick my wounds. I wanted to be alone, I wanted time to mourn. I wasn\u2019t myself. I needed to regain my self. I was more than depleted. I wouldn\u2019t have talked to anybody had anyone reached out to me at that point. I wanted time to myself.             <br \/><strong>Caregiver (cited in 135)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_116 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>This identity transition can manifest as a loss of bearings, a sense of emptiness, difficulty finding meaning in daily life, questions about the future, and strained social and family relationships. The prevailing uncertainty of this phase can also generate anxiety, exacerbating the distress that accompanies the loss (2).  <\/p>\n<p>When all of this collides with the lingering emotional, psychological, physical, and financial impacts of caregiving, it severely compounds the trauma of bereavement. Ultimately, grief during the post-caregiving period extends far beyond mourning the loss of a loved one; it also entails the painful process of rebuilding oneself from scratch.  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_41 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs during the post-caregiving phase<\/h3><div class=\"et_pb_blurb_description\"><p>At this time, caregivers may feel as though they have fallen through the cracks, as the institutional services and support they had received up to their loved one\u2019s death vanish overnight (9, 59, 130, 136). Through professional bereavement support and follow-up are absolutely essential, they are routinely overlooked in palliative care (136) and rarely implemented in hospital and long-term care settings (136).  <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/09\/apostrophe.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 20px; padding-top: 10px;\">They just abandon you. There\u2019s no aftercare at all. Whereas I do find that very important. So I think that is pretty poor&#8230; Well, I\u2019m thinking maybe that a grief coach could be added to the rehabilitation team to give that aftercare. Because what you\u2019ve been through is not nothing. Because the grief coach actually said, \u201cIf you don\u2019t watch out, you\u2019ll get PTSD.\u201d       <br \/><strong>Caregiver (cited in 9)<\/strong><\/p>\n<p>To effectively shield caregivers from this systemic abandonment and support them through the post-caregiving transition, professional support systems must adopt a proactive strategy that includes:<\/p>\n<ul>\n<li>Addressing the topic of post-caregiving long before loss occurs, to help caregivers better navigate the transition (130).<\/li>\n<li>Acknowledging the lingering psychological and emotional after-effects arising from the dual impact of intense caregiving and deep bereavement (130).<\/li>\n<li>Speaking openly about illness and mortality to strip away the discomfort and taboos that surround death (59).<\/li>\n<li>Guiding identify reconstruction by actively helping caregivers navigate their fractured sense of self, regain a sense of social belonging, and rebuild a life beyond the caregiving role (9).<\/li>\n<li>Connecting caregivers to external bereavement resources, community organizations, funeral cooperatives or peer support groups where they can come into contact with others who share similar experiences (59, 130).<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_26-popup-layout-28019\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_27 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"derniers-moments-de-vie\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_31 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_36 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_46 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_117 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Final moments with the care recipient<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_118 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>For caregivers, the final days of a loved one\u2019s life represent a critical threshold marked by escalating responsibilities and a direct, inescapable confrontation with mortality. <\/p>\n<p>These final days or hours can impose significant additional demands on caregivers. As a loved one deteriorates and their needs become absolute, caregivers can be thrust into relentless hands-on care, providing comfort, maintaining basic hygiene, managing symptoms, and monitoring their overall condition \u2014 a reality felt most acutely in a home-care setting (118, 119). At the same time, they must frequently offer sustained emotional support, often while maintaining an unbroken vigil at the bedside (3, 85).   <\/p>\n<p>The final stretch is further complicated by the need to make complex medical decisions, particularly when the dying individual can no longer speak for themselves. Caregivers are thus compelled to navigate intricate, high-stakes choices at the very moment when they are under considerable emotional duress (3, 85).  <\/p>\n<p>As the illness gains its final ground, caregivers may grapple with a mix of worry, sadness, fear, frustration, and a crushing sense of powerlessness (2). Yet even in the shadow of impending loss, these emotions can coexist with a fierce desire to protect and cherish whatever precious time they have left together (120).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_42 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>He can no longer speak. I can still hold his hand&#8230; he can still squeeze my hand but his gaze \u2014 I feel like he\u2019s no longer there. [Free translation]  <br \/><strong>Caregiver (cited in 56)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_blurb_43 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs during the final stages of life <\/h3><div class=\"et_pb_blurb_description\"><p>As the life of a loved one draws to a close, caregiver needs are particularly significant, given how this stage is liable to impact not only their immediate experience, but also their subsequent grieving and the post-caregiving period (121).<\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Information and preparedness<\/h4>\n<p>Among the most critical needs for caregivers are clear, consistent, and personalized information regarding their loved one\u2019s condition, how they are likely to progress through the final stages, and the physical changes to anticipate. Without adequate preparation, some caregivers may experience changes in their loved one\u2019s physical appearance as a profound shock: <br \/><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 0; margin-top: 15px;\"><\/p>\n<div style=\"padding-left: 70px;\">But nobody ever said to me how awful he would look in those four days or so before he died. <br \/><strong>Caregiver (cited in 11)<\/strong><\/div>\n<p style=\"clear: both; margin-top: 20px;\">Equipping caregivers with advance knowledge allows them to reshape their expectations, fortity themselves emotionally, and dismantle any anxieties stemming from uncertainties about the end of life (11, 75).<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"margin-top: 20px;\"><\/p>\n<div style=\"padding-left: 70px;\">The night before last, he let out a deep sigh. I thought he had died. I don\u2019t know how he\u2019ll go&#8230; but I found myself wondering: \u201cShould I touch him? What do I do? Should I wait until tomorrow morning?\u201d [Free translation] <br \/><strong>Caregiver of a partner (cited in 75)<\/strong><\/div>\n<h4 style=\"font-size: 18px; font-weight: bold;\"><\/h4>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Emotional and relational support<\/h4>\n<p>Caregivers often experience a period of heightened emotional vulnerability as death draws near. During this time, they need safe spaces to voice their feelings without fear of judgment. Their emotional state in the lead-up to death, coupled with the underlying quality of their relationship with the care recipient, are often pivotal in how they ultimately navigate the grieving process (121).  <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Recognition and boundaries<\/h4>\n<p>Caregivers need their efforts to be recognized rather than taken for granted. While some choose to maintain an unbroken presence at their loved one\u2019s bedside, not everyone is physically or emotionally able to do so: <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 0;\">At some point, I have to sleep and eat&#8230; My mother wanted me there 24 hours a day. [Free translation] <br \/><strong>Caregiver (cited in 8)<\/strong><\/p>\n<p>During this final chapter, it is essential to respect caregivers\u2019 boundaries and allow volunteers or members of their support network to step in. Having others present at the bedside gives caregivers some much-needed breathing room (8).<\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_27-popup-layout-28013\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_28 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"reconnaissance-des-ppa\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_32 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_37 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_47 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_119 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase; font-weight:bold;\">Caregiver recognition<\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_120 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>There are two distinct aspects to caregiver recognition. If acknowledging their supportive role toward is essential, so too is having their own support needs recognized and addressed (23, 55, 56, 75). This dual recognition is particularly important at certain milestones, particularly when decisions need to be made about care and the end-of-life setting.   <\/p>\n<p>Caregiver recognition makes it possible to:<\/p>\n<ul style=\"margin-bottom: 10px;\">\n<li>Avoid having tensions arise between caregivers and clinicians (23, 55, 56).<\/li>\n<li>Ensure that caregivers obtain timely support as needed (11, 23).<\/li>\n<li>Avoid having caregivers taken for granted, thereby preventing them from being overwhelmed by the tasks and responsibilities of their role (23).<\/li>\n<li>Acknowledge caregivers\u2019 vulnerability, rights, and evolving needs throughout the trajectory (75). <\/li>\n<li>Keep caregivers informed, and validate the extent to which they wish to be involved as experts on their loved one\u2019s situation (23, 56). <\/li>\n<\/ul>\n<p>Without recognition, caregivers may not receive the full measure of the support to which they are entitled, potentially affecting their health and well-being and leaving them feeling isolated (11, 23).<\/p>\n<h3 style=\"text-transform: uppercase; font-weight: bold; font-size: 20px; text-align: center;\">Caregiver self-identification<\/h3>\n<p>Self-identification \u2014 recognizing oneself as a caregiver \u2014 is a complex process, particularly in palliative and end-of-life situations. The tendency to see caregiving as a natural extension of family or spousal responsibilities, especially among women, normalizes the role and renders the associated involvement invisible (22, 54, 75).  <\/p>\n<p>The intense focus on the care recipient can also make it difficult for caregivers to acknowledge their own realities; as a result, they may minimize their own needs and the challenges they face. Isolation, taboos surrounding death, and a lack of social and institutional recognition can further obscure the role, including from caregivers themselves (11, 23, 75).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_44 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs<\/h3><div class=\"et_pb_blurb_description\"><p>Throughout the trajectory, and as early as possible, caregivers need:<\/p>\n<ul>\n<li><strong>To feel as though their contribution isn\u2019t merely taken for granted.<\/strong> Those around them \u2014 including professionals \u2014 may see the provision of support as a \u201cnatural\u201d responsibility, sometimes without regard for the limits of the caregiver\u2019s capacity (22). In certain contexts, caregivers may also attempt to compensate for a lack of resources by performing such tasks as administering medication or managing symptoms themselves (22, 23).   <\/li>\n<li><strong>To have their limits and wishes acknowledged and respected.<\/strong> This involves a humanist approach that takes the individual pace, needs and capacities of each caregiver into account (23, 56).<\/li>\n<li><strong>To be recognized as care partners.<\/strong> Caregivers want their expertise and knowledge of their loved ones to be valued (23, 56). Involving caregivers in planning their loved one\u2019s care is essential to supporting both their own well-being and that of the person receiving care (8, 23).  <\/li>\n<li><strong>To be recognized throughout the trajectory, including during care transitions.<\/strong> The transition from home-based care to another setting can be challenging, as the caregiver\u2019s role shifts from that of expert and primary care provider to that of a \u201cmere\u201d companion (23). <\/li>\n<li><strong>To have their experiences taken into account.<\/strong> This may include how caregivers experience their role emotionally and socially, as well as the changes and loss \u2014 relational or otherwise \u2014 associated with caring for a loved one in a palliative or end-of-life context (22).<\/li>\n<li><strong style=\"font-size: 15px;\">To have diverse caregiving configurations recognized.<\/strong> This entails expanding the traditional caregiver\u2013care recipient model to include multifaceted caregiving within families (3); community-based caregiving among Indigenous peoples (16); chosen families within 2SLGBTQIA+ communities (77); and \u201cstreet families\u201d in the context of homelessness, where meaningful bonds are not necessarily biological (78). <\/li>\n<\/ul>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_28-popup-layout-27968\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_29 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"communication\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_33 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_38 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_48 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_121 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Communication and partnership with care teams<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_122 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Establishing and maintaining a strong partnership between the care recipient, their caregivers, and health professionals is central to the end-of-life care pathway (4, 72). This collaborative mindset ensures, if they wish, that caregivers are recognized as true care partners who are fully involved at key milestones; it also empowers them to identify and respect their own limits (4, 23) while boosting their confidence and sense of security regarding the care their loved one receives (32, 56, 60, 72, 73).   <\/p>\n<p>However, several barriers can restrict caregiver involvement in discussions and decision-making. These include poor communication from medical staff; a feeling of being unheard; a lack of professional sensitivity toward the family\u2019s suffering and concerns; insufficient clinical training; language barriers; and a lack of cultural awareness (23, 24, 25).  <\/p>\n<p>At critical turning points \u2014 <strong><a class=\"diagnostic\" href=\"#\">diagnosis,<\/a><\/strong> <strong><a class=\"periode-intensification-soutien-apporte\" href=\"#\">a sharp decline in autonomy,<\/a><\/strong> or <strong><a class=\"changement-de-lieu\" href=\"#\">care transitions,<\/a><\/strong> for example \u2014 vague explanations from medical staff can trigger anger, distress and frustration. Given that most caregivers are deeply invested in understanding their loved one\u2019s treatment, communication breakdowns can only breed mistrust of the care team (9, 23). Furthermore, caregivers who are sidelined or ignored report experiencing certain milestones like the death of their loved one and subsequent grief far more intensely, even as they grapple with feelings of guilt and a sense of missed opportunities. Lastly, those who are precluded from contributing their expertise during care planning or sharing their concerns are more likely to evaluate their loved one\u2019s end-of-life care as deficient (69).    <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_45 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>At one point, the doctor wasn\u2019t even listening to me. She didn\u2019t want to speak to me. She didn\u2019t ask me any questions \u2014 it was as if I didn\u2019t exist. Sylvie was weak, and I was there around the clock. So I knew everything, yet the doctor wouldn\u2019t even listen to me. [Free translation]    <br \/><strong>Caregiver (cited in 23)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_123 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Conversely, proactive communication, timely updates and regular clinical contact serve to significantly stabilize and reassure caregivers (8, 60). <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_46 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs as partners in care<\/h3><div class=\"et_pb_blurb_description\"><p>Establishing and sustaining a resilient partnership between caregivers and the care team across the trajectory depends on certain foundational pillars. <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Open communication<\/h4>\n<p>Communication from all health professionals must be clear, accessible, and respectful (46, 73). Effective communication hinges on team member availability, their willingness to listen, and their capacity to integrate the distinct perspectives of both caregivers and care recipients (8, 11, 23, 24, 72).  <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Health information<\/h4>\n<p>Subject to patient consent, clinicians should provide regular, systematic updates on the patient\u2019s condition, both proactively and on request (8, 24). <\/p>\n<p>Given the gravity of these discussions, information must be delivered in plain language and with a compassionate tone (23). Keeping caregivers informed allows them to prepare for and anticipate further stages of decline (5). Furthermore, transparent communication between the care team and care recipient directly alleviates the caregiver\u2019s burden, offering them the peace of mind that their loved one is fully equipped to make their own decisions (5).   <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Dedicated time for dialogue<\/h4>\n<p>Treatment paths, medical intervention and medication regimes are complex and sensitive matters; addressing them requires an underlying foundation of trust. Professionals must build regular opportunities for dialogue into their schedules, allowing caregivers to share their views, ask questions, and verify their understanding of the clinical picture. This is especially critical when the caregiver is the designated substitute decision-maker (8).   <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Effective coordination<\/h4>\n<p>Fragmented coordination actively compounds caregiver distress. Inconsistent care plans, the logistics of managing appointments across disjointed agencies, and the exhaustion of repeating a patient\u2019s history multiple times erode institutional trust. These systemic failures can leave families feeling as though they have been cut adrift from the very systems that were meant to protect them (4, 72). <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"margin-top:15px;\"><\/p>\n<div style=\"padding-left:70px; margin-bottom:20px;\">I don\u2019t know who I was talking to, I hear one name, I hear another&#8230; And then I\u2019d have voices on the phone and I\u2019m, like who\u2019s this, which one is that? Holy smokes. Come on, just stick to one or two people\u2026 because they\u2019re all asking the same questions.  <br \/><strong>Caregiver (cited in 4)<\/strong><\/div>\n<p>Clear, structured coordination \u2014 whether led by a designated care coordinator or a case manager \u2014 is therefore essential (72). This bridges the gap between caregivers and the care team while ensuring better continuity of care through a holistic understanding of the situation (23).  <\/p>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Recognition of caregiver expertise<\/h4>\n<p>A successful partnership requires mutual respect for the distinct expertise held by professionals and caregivers alike. While the care team assesses the situation through a clinical lens and over a limited timeframe, caregivers possess an intimate, longitudinal knowledge of the patient\u2019s character, values, and history. These unique insights are invaluable for predicting how the care recipient will experience ongoing and future clinical challenges (56).  <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-top: 15px;\"><\/p>\n<div style=\"padding-left:70px; margin-bottom:20px;\">I thought that was really nice because I still had some control over the situation. They sort of asked, \u201cWhat clothes do you want him to have on today?\u201d, so I wasn\u2019t doing the nitty-gritty showering and toileting I was sitting there pushing a button and they\u2019d come and toilet him and shower him and dress him, but I still had a say in when it was done and how it was done, which was really nice.  <br \/><strong>Caregiver supporting a partner (cited in 11)<\/strong><\/div>\n<h4 style=\"font-size: 18px; font-weight: bold;\">Willingness to discuss death<\/h4>\n<p>Navigating end-of-life options and the reality of death requires proactive professional guidance. Given the emotional weight of these conversations, caregivers must be able to feel they can access social workers, psychologists, or spiritual care providers to process their own distress (34).  <\/p>\n<p>Regrettably, caregivers frequently detect discomfort among health professionals when discussing end-of-life issues and death (8). Avoidant clinical attitudes stifle the open dialogue essential to building a supportive environment. They also undermine trust \u2014 another requirement for helping families navigate care and services and foster shared decision-making (23, 30). Conversely, frank, courageous discussions clear the air, enhancing the quality of the remaining time a caregiver share with their loved one (60).   <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_29-popup-layout-27964\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_30 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"changement-de-lieu\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_34 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_39 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_49 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_124 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Changes in care setting and care team<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_text_125 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>At various junctures, a patient\u2019s evolving condition may require a transfer to a more suitable setting \u2014 for example, their home, a hospital, a long-term care facility (CHSLD), or a palliative care hospice (5). Because end-of-life care spans a range of settings, moving between these environments can introduce significant complexity for patients and their families (74). Furthermore, relocation generally means adapting to an entirely new care team, which exacerbates the sense of instability. For caregivers, this can feel like starting again from scratch, constantly repeating their loved one\u2019s medical history, preferences, and personal background to unfamiliar faces (17, 19).    <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_126 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"font-size: 20px; text-transform: uppercase;\"><strong>Choice of care setting<\/strong><\/h3>\n<p>While relocation is not always a matter of choice, it sometimes stems from a decision made by the person at the end of life and their family. <\/p>\n<p>Where multiple options exist (e.g., intensive care units, hospices), then caregivers and their loved ones must evaluate which setting offers the care that best aligns with the patient\u2019s dignity and values. Caregiver input in this context is paramount, particularly when the care recipient can no longer communicate preferences or provide informed consent.   <\/p>\n<p>However, caregivers rarely feel entirely free to choose, often finding themselves compelled by circumstances. They frequently feel constrained by their loved one\u2019s explicit wishes, societal expectations, or a lack of viable alternatives \u2014 pressures that routinely breed guilt and internal conflict (80). Furthermore, admission to specialized units or hospices is strictly conditional on a short prognosis of just a few weeks or months (6, 74), which heavily restricts the availability of these resources.    <\/p>\n<p>Even when a patient qualifies for specialized care, they may be transferred to more standard long-term care (e.g., a CHSLD) if they outlive their initial clinical timeframe. Such late-stage relocations raise troubling human, ethical, and organizational dilemmas. For caregivers, watching a loved one uprooted and moved to a different facility, sometimes just days before death, can come as a severe shock and cause intense psychological distress (32).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_text_127 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Transitioning from home to a care setting<\/strong><\/h3>\n<p>The transfer from home to a care setting generally occurs when the progression of the disease or condition creates care and support needs that can no longer be met at home, despite the caregiver\u2019s best efforts (75). <\/p>\n<p>This move is often perceived as a sign that death is imminent. For caregivers, it can be emotionally draining, evoking deep sadness and fear as they continually adjust their expectations in response to their loved one\u2019s shifting health status (9, 75).  <\/p>\n<\/div>\n<div class=\"et_pb_blurb_47 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>It meant that this was his final home. So, for me, it meant he would pass away here \u2014 and that this would be soon. It was hard because, at that point, you realize he isn\u2019t coming back home. For me, it felt like a real, definitive break. [Free translation]    <br \/><strong>Caregiver of a partner (cited in 75)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_128 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The relocation from home to a care facility can also trigger intense disappointment or guilt, especially if the caregiver views their inability to provide adequate care at home as a personal failure (5, 27). For many, this decision is steeped in grief, as they mourn the relationship that once was and the loss of the opportunity to care for their loved one until death (9).  <\/p>\n<p>A change in care setting can also drastically alter the caregiver\u2019s identity, forcing them to step down as primary expert and be reframed as a \u201ccompanion\u201d \u2014 a shift frequently experienced as a loss of the recognition and legitimacy once conferred on their role (23, 56). At the same time, however, the transfer can bring a sense of relief, as the responsibility for providing care no longer rests entirely on their shoulders (9, 30).   <\/p>\n<\/div>\n<div class=\"et_pb_blurb_48 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>That was tricky. In that respect, a weight was lifted from my shoulders because I no longer had that care task, I didn\u2019t have to be afraid all the time that I should be there or that something might go wrong. So that really lifted a weight off my shoulders.   <br \/><strong>Caregiver (cited in 9)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_129 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Transitions to home care<\/strong><\/h3>\n<p>Whether driven by personal reasons or limited institutional capacity, some care recipients are discharged from clinical facilities to receive palliative care at home (4, 32). Such a transition relies entirely on the involvement of caregivers, whose hands-on role in this scenario is often underestimated \u2014 not just by health professionals, but also by the care recipient, and even by the caregivers themselves.  <\/p>\n<p>A frequent bottleneck in the move to home care is fragmented communication and coordination (4). In many situations, caregivers are left without clear guidance regarding the available resources, their specific duties, or how to respond if their loved one takes a turn for the worse (4).  <\/p>\n<p>Furthermore, home care regularly involves managing complex medication regimens and medical equipment. These tasks place immense responsibility on caregivers, who suddenly find themselves in charge of emergency decisions and clinical procedures that directly impact their loved one\u2019s survival and comfort (4, 91). Indeed, once the initial adjustment period gives way to daily routine, caregivers are frequently blindsided by the sheer physical and emotional impact of providing end-of-life care at home (95).   <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_49 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h3 class=\"et_pb_module_header\">Caregiver needs during changes in care settings<\/h3><div class=\"et_pb_blurb_description\"><p>Regardless of when it occurs in the trajectory, relocation can generate specific needs for caregivers.<\/p>\n<p>Wherever possible, caregivers and their loved ones <strong>should be actively supported in selecting the care setting,<\/strong> given that these decisions can have lasting repercussions \u2014 for example, causing the caregiver to question their choices after the care recipient has died (23, 96, 97).  <\/p>\n<p>This includes being provided with <strong>clear, consistent, and timely information<\/strong> about the reasons for the transition, the available options, the nature of the care provided, and how the move will affect the caregiver\u2019s day-to-day responsibilities (5, 62, 73). Under these circumstances, it is paramount that caregivers be recognized as legitimate care partners whose intimate knowledge of their loved one contributes substantially to the quality of clinical outcomes (3, 9). They must also be given realistic, advanced insights into the realities of home-based palliative care well before any discharge to the home takes place (34).   <\/p>\n<p><strong>Seamless care continuity and coordination<\/strong> are essential to minimize service gaps, prevent information losses, and ease the cognitive load of navigating the health and social services system (17, 19). The need for a clearly structured plan for managing medication and medical issues is vividly illustrated in the account below: <\/p>\n<p><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/06\/Capture-decran-2026-06-10-145940.png\" width=\"55\" height=\"43\" alt=\"Apostrophe\" class=\"wp-image-24377 alignleft size-full\" style=\"padding-bottom: 50px;\"> I had to have a plan&#8230; because they were coming in and out of the hospital room 13 times [a day]&#8230; so the pharmacist came and he gave me a plan of when to give drugs and how much&#8230; once I got home, the nurse helped me scale it down to like six times, and the doctor helped too&#8230; I can\u2019t imagine having to do 13 or 14 different things in a day. <br \/><strong>Caregiver (cited in 4)<\/strong><strong><\/strong><\/p>\n<p>Relocating a patient also heightens the caregiver\u2019s <strong>need for emotional support<\/strong> (8, 87). While this comfort frequently comes from their social circle, professionals counselling is invaluable for helping families articulate their reservations, personal limitations, and needs \u2014 ultimately empowering them to support their loved one without eroding their own well-being (95).  <\/p>\n<p>Lastly, caregivers <strong>need support as they reassess and redefine their role<\/strong> in the new setting (4, 9, 73). Subject to patient consent, most wish to remain actively involved following a transfer \u2014 whether by participating in decisions, advocating for the patient\u2019s rights, or assisting with basic care, (23, 73). These high-stress transitions are experienced more positively when care teams integrate caregivers as true partners in care and systematically address their needs (23, 27).  <\/p>\n<\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_30-popup-layout-27984\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><div class=\"el_modal_popup_31 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"ressources-et-soutien\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_35 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_40 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_50 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_130 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h2 style=\"text-transform: uppercase;\"><strong>Caregiver resources and support<\/strong><\/h2>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_50 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>Despite the recognized importance of support throughout the trajectory, many caregivers have difficulty accessing formal resources.<\/p>\n<p>Various barriers can play into this situation:<\/p>\n<ul>\n<li><strong>Health and social services resources that are insufficient<\/strong> to meet the needs of caregivers and care recipients (23).<\/li>\n<li><strong>A lack of information on the available health and social services or community resources,<\/strong> as well as on financial assistance programs \u2014 a situation compounded by poor coordination among these various stakeholders (23, 79).<\/li>\n<li><strong>A reluctance to seek help,<\/strong> brought on by the feeling that doing so is a sign of failure or inadequacy:<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_blurb_51 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[P]ersonally I found it really difficult to ask for help. I had this feeling that I\u2019d failed. Whereas [the care recipient] had actually said a couple of times, \u201cYou can\u2019t keep this up and I really don\u2019t mind; it\u2019s OK if you ask them.\u201d But I found it so difficult to take that step of involving the\u2026 care service because you\u2019re basically handing over to them.   <br \/><strong>Caregiver (cited in 9)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_131 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Access to support and resources is vital, particularly during emotionally demanding periods in the trajectory \u2014 times when caregivers must make complex and difficult decisions while managing the often-substantial responsibilities of providing care (9, 11, 81). <\/p>\n<p>Support for caregivers can take many forms. <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Support for the care recipient<\/strong><\/h3>\n<p>One of the needs most clearly expressed by caregivers is help with supporting their loved one, especially when care is provided at home. <\/p>\n<p>Resources such as assistance with dressing and meals, home modifications, and other practical supports can reduce the burden of care and help safeguard caregiver health (11). However, access to these services remains challenging, due to long wait times, inflexible schedules, and prohibitive financial costs \u2014 particularly when services are private (4, 82).  <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Psychological and emotional support<\/strong><\/h3>\n<p>The profound upheavals and emotional intensity of palliative and end-of-life caregiving often leave caregivers with a sense of deep sadness and loneliness, sometimes coupled with a marked decline in their own physical and mental health (9, 11, 22, 83, 84). Professionals must therefore monitor caregiver health to deliver timely psychosocial interventions and resources, thereby preventing acute distress (81). Early outreach is vital to breaking through isolation, strengthening a caregiver\u2019s ability to cope, and helping them process complex, painful emotions (81).   <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Family, friends and community<\/strong><\/h3>\n<p>Beyond formal support, family members, friends, and the broader social circle play a critical role in sustaining caregivers (85). Support from these networks can give caregivers some much-needed respite, allowing them to step back from their responsibilities, take some time for themselves, and rest (11, 24, 86).  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_52 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I\u2019ve got a daughter\u2026 Every day that she\u2019s at home\u2026 she comes to make sure everything\u2019s alright <br \/><strong>Caregiver (cited in 86)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_132 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>As well as providing help with daily tasks, family and friends can be a source of comfort. Simply being present and willing to listen can drastically alleviate the loneliness that is all too common in caregiving (22).  <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Peers and support groups<\/strong><\/h3>\n<p>Peer support \u2014 which can come in many forms, from support groups and peer-assistance programs to more informal exchanges \u2014 allows caregivers to share their experiences with others who have faced similar circumstances (11, 73, 87, 185, 186). In these settings, complex emotions can be voiced more openly, including feelings that may be difficult to acknowledge to family and friends, such as exhaustion, anger, ambivalence, or even the wish for the care recipient\u2019s suffering to end sooner. By helping to normalize these experiences, peer support can vastly reduce feelings of isolation, offering a safe space where caregivers can speak freely without fear of being judged (75, 185).    <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_53 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>We are like family. We know each other\u2019s troubles; we exchange sad stories or glad stories every week . . . I think that\u2019s why I\u2019m so stable because I talk to so many people who are in the same boat.  <br \/><strong>Caregiver (cited in 86)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_133 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>In professionally facilitated peer-support groups, facilitators do more than just guide the conversation. They also offer practical, personalized help with the concerns and challenges caregivers bring to the group, from navigating health and social services to identifying interventions and approaches that may be helpful (11, 87). <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Information and training<\/strong><\/h3>\n<p>A range of online resources and programs can help palliative and end-of-life caregivers build the knowledge, skills, and confidence they need to carry out their role (6). These resources are offered by organizations, provincial and federal government bodies, and community groups. <\/p>\n<p>Training, coaching, and psychoeducational programs can also help caregivers prepare for and navigate the challenges of their role, while easing or preventing some of its demands (9, 11, 81). Such programs can deepen caregivers\u2019 understanding of their loved one\u2019s diagnosis and prognosis, helping them prepare emotionally for the loss to come (60).   <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase;\"><strong>Respite<\/strong><\/h3>\n<p>Respite care offers caregivers a temporary break by entrusting their loved one\u2019s care to a designated service. Respite options can take several forms (186):  <\/p>\n<ul style=\"margin-bottom: 15px;\">\n<li>At-home respite: A professional or care worker comes to the home to provide care, giving the caregiver time to step away or rest, confident that their loved one is in good hands. <\/li>\n<li>Out-of-home respite: The care recipient spends a set period at a specialized facility, where they receive comprehensive care, often around the clock. <\/li>\n<li>Day programs: Though generally only available on weekdays, day centres (also known as \u201cdrop-in\u201d centres) offer regular, short-term periods of respite, typically in a group setting.<\/li>\n<\/ul>\n<p>In palliative and end-of-life context, respite can support caregiver well-being, strengthen their ability to cope with challenges, reduce the stresses of day-to-day caregiving, and help safeguard their quality of life. Yet despite its clear importance, access to respite remains uneven. Availability varies across regions, while the services are often of limited duration or frequency, falling far short of the needs of caregivers engaged in a prolonged care trajectory (186).   <\/p>\n<h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Balancing caregiving with work<\/strong><\/h3>\n<p>Balancing work with caregiving presents a significant hurdle, particularly during the palliative or end-of-life phase. The heavy emotional and cognitive toll of caregiving can mean having to reduce working hours, take frequent leaves of absence, or put career advancement on hold \u2014 choices that routinely trigger financial hardship (15, 152). When employers fail to understand or accommodate these pressures, the lack of support may further intensify caregiver stress and exhaustion (9).   <\/p>\n<p>By contrast, workplaces that recognize these challenges and offer flexibility go a long way toward alleviating the tension between employment and care. <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_blurb_54 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\"><\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Well, I have to say that in my case, my employer was very good in helping look at the options and what they could do for me. They also found work that I could do from home. They created all that for me, and I found that ever so nice.   <br \/><strong>Caregiver (cited in 9)<\/strong><\/p>\n<\/div><\/div><\/div><\/div>\n\n<div class=\"et_pb_text_134 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3 style=\"text-align: center; font-size: 20px; text-transform: uppercase; margin-top: 10px;\"><strong>Financial assistance<\/strong><\/h3>\n<p>Financial assistance can ease the economic strain of caregiving, particularly when caregivers need to reduce their working hours or take time off work. In Canada, the Employment Insurance compassionate care benefit provides temporary income support to eligible caregivers who need to provide care or support to someone with a serious medical condition and a significant risk of death within 26 weeks (six months). However, complex eligibility requirements, burdensome application procedures, and limited awareness of the available programs can make these benefits difficult to access, leaving many eligible caregivers struggling (143). Moreover, even when caregivers do receive the benefit, payments will cease at the end of the week in which the care recipient dies, potentially leaving them without financial support at a particularly vulnerable time (82, 186).     <\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div><style id=\"el-divi-el_modal_popup_31-popup-layout-27972\">:root{--gcid-primary-color: #2bafab;--gcid-secondary-color: #2ea3f2;--gcid-heading-color: #00293c;--gcid-body-color: #00293c;--gcid-link-color: #2bafab;--gcid-6615f0c7-ee7b-4bf6-a514-c95313f1bb0f: #fbbea7;}<\/style><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":18,"featured_media":27877,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-27864","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - 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