Volontés de fin de vie des adultes au-delà des outils cliniques et juridiques : protocole de revue de la portée
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Résumé
Introduction : Les recherches sur les volontés de fin de vie (VFV) se concentrent principalement sur les personnes âgées ou malades, limitant la réflexion à certains moments des trajectoires de vie. Inspiré de Patterson et Hazelwood (2020), cet article propose 4 dimensions des VFV : les soins médicaux, les considérations juridiques, les priorités personnelles et l’épanouissement socio-spirituel. De nombreuses synthèses de connaissances explorent les VFV, mais elles se concentrent principalement sur les 2 premières dimensions, laissant dans l’ombre des aspects pourtant essentiels à une planification de fin de vie centrée sur la personne.
Objectif : Cartographier l’étendue et la nature des connaissances des priorités personnelles et du bien-être socio-spirituel des VFV, afin d’identifier les tendances, les lacunes et les implications pour la recherche et la pratique.
Méthode : Cette revue de la portée suit la méthodologie en 6 étapes de Levac et al. (2010) et interroge plusieurs bases de données scientifiques (CINAHL Complete, Érudit, MEDLINE, PsycINFO, Social Sciences Abstracts, Social Work Abstracts et Web of Science) et de littérature grise (Dissertations & Theses Global et Sociological Abstracts). Les écrits publiés à partir de 2015, en anglais ou en français, seront systématiquement identifiés et sélectionnés selon un processus en double insu indépendant.
Discussion et retombées anticipées : Cette revue de la portée permettra d’identifier les contextes dans lesquels ces 2 dimensions s’opérationnalisent, les méthodologies de recherche utilisées et les lacunes dans l’état des connaissances sur le sujet. Durant la 6e étape de cette revue, l’engagement avec des parties prenantes facilitera la synthèse d’informations critiques afin d’éclairer les pratiques, d’influencer l’élaboration de politiques et d’orienter les recherches futures.
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Références
Akdeniz, M., Yardımcı, B., & Kavukcu, E. (2021). Ethical considerations at the end-of-life care. SAGE open medicine, 9, 20503121211000918. https://doi.org/10.1177/20503121211000918
Arksey, H., & O’Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
Borovecki, A., Curkovic, M., Nikodem, K., Oreskovic, S., Novak, M., Rubic, F., Vukovic, J., Spoljar, D., Gordijn, B., & Gastmans, C. (2022). Attitudes about withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide, and physician assisted suicide: a cross-sectional survey among the general public in Croatia. BMC Medical Ethics, 23(1), 13. https://doi.org/10.1186/s12910-022-00751-6
Brooks, L. A., Manias, E., & Nicholson, P. (2017). Communication and Decision-Making About End-of-Life Care in the Intensive Care Unit. American journal of critical care : an official publication, American Association of Critical-Care Nurses, 26(4), 336–341. https://doi.org/10.4037/ajcc2017774
Brown, S. M. (2017). Whose advance directives are they, after all? The Lancet Respiratory Medicine, 5(6), 464–466. https://doi.org/10.1016/S2213-2600(17)30176-5
Burks, C. E., Salaami, O., Cantrell, S. E., Sharda, N. K., & Yanamadala, M. (2023). A systematic review of the effects of advance care planning interventions in nursing homes. Journal of the American Medical Directors Association, 24(12), 1809–1819.e4. https://doi.org/10.1016/j.jamda.2023.09.018
Burr, V. (2024). Social constructionism (4th ed.). Routledge. https://doi.org/10.4324/9781003335016
Canny, A., Mason, B., & Boyd, K. (2023). Public perceptions of advance care planning (ACP) from an international perspective: a scoping review. BMC palliative care, 22(1), 107. https://doi.org/10.1186/s12904-023-01230-4
Cox, K., Bird, L., Arthur, A., Kennedy, S., Pollock, K., Kumar, A., Stanton, W., & Seymour, J. (2013). Public attitudes to death and dying in the UK: a review of published literature. BMJ supportive & palliative care, 3(1), 37–45. https://doi.org/10.1136/bmjspcare-2012-000203
De Panfilis, L., Rossi, P. G., Mazzini, E., Pistolesi, L., Ghirotto, L., Noto, A., Cuocolo, S., & Costantini, M. (2020). Knowledge, Opinion, and Attitude About the Italian Law on Advance Directives: A Population-Based Survey. Journal of pain and symptom management, 60(5), 906–914.e4. https://doi.org/10.1016/j.jpainsymman.2020.06.020
Fan, S. Y., Sung, H. C., & Wang, S. C. (2019). The experience of advance care planning discussion among older residents in a long-term care institution: A qualitative study. Journal of clinical nursing, 28(19-20), 3451–3458. https://doi.org/10.1111/jocn.14936
Hong, Q. N., Pluye, P., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., Dagenais, P., Gagnon, M.-P., Griffiths, F., Nicolau, B., O’Cathain, A., Rousseau, M.-C., & Vedel, I. (2020, 18 septembre). Mixed Methods Appraisal Tool (MMAT), version française 2018 – Outil d’évaluation de la qualité méthodologique des études incluses dans une revue mixte : manuel pour les usagers. McGill University. http://mixedmethodsappraisaltoolpublic.pbworks.com/w/file/fetch/141403911/MMAT_2018_criteria-manual_2020-09-18-FR.pdf
Hopping-Winn, J., Mullin, J., March, L., Caughey, M., Stern, M., & Jarvie, J. (2018). The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. Journal of palliative medicine, 21(4), 541–545. https://doi.org/10.1089/jpm.2017.0317
Institut national d’excellence en santé et en services sociaux. (2016, janvier). Les niveaux de soins : normes et standards de qualité. Institut national d’excellence en santé et en services sociaux. Gouvernement du Québec https://www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/OrganisationsSoins/INESSS_Guide_NiveaudeSoin.pdf
Institut national d’excellence en santé et en services sociaux. (2024, février). Expression des volontés au regard des objectifs de soins et de la décision relative à la réanimation cardiorespiratoire. Gouvernement du Québec. https://www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/OrganisationsSoins/INESSS_Objectifs_soins_Avis.pdf
Kellehear, A., & Sallnow, L. (2012). Public Health and Palliative Care: An Historical Overview. In L. Sallnow, S. Kumar, & A. Kellehear (Eds.), International Perspectives on Public Health and Palliative Care. Routledge. https://doi.org/10.4324/9780203803189
Leeson, G. W. (2014). Increasing Longevity and the New Demography of Death. International Journal of Population Research, 1–7. https://doi.org/10.1155/2014/521523
Levac, D., Colquhoun, H., & O’Brien, K. K. (2010). Scoping studies: advancing the methodology. Implementation science : IS, 5, 69. https://doi.org/10.1186/1748-5908-5-69
Macedo, J. C., Rego, F., & Nunes, R. (2023). Perceptions, Attitudes, and Knowledge toward Advance Directives: A Scoping Review. Healthcare (Basel, Switzerland), 11(20), 2755. https://doi.org/10.3390/healthcare11202755
Meier, C., Vilpert, S., Wieczorek, M., Borrat-Besson, C., Jox, R. J., & Maurer, J. (2023). Development and validation of a subjective end-of-life health literacy scale. PloS one, 18(10), e0292367. https://doi.org/10.1371/journal.pone.0292367
Miles, M., Huberman, M., & Saldana, J. (2014). Qualitative Data Analysis: A Methods Sourcebook (3rd ed.). Sage Publications.
Noonan, K., Horsfall, D., Leonard, R., & Rosenberg, J. (2016). Developing death literacy. Progress in Palliative Care, 24(1), 31–35. https://doi.org/10.1080/09699260.2015.1103498
Omori, M., Jayasuriya, J., Scherer, S., Dow, B., Vaughan, M., & Savvas, S. (2022). The language of dying: Communication about end-of-life in residential aged care. Death studies, 46(3), 684–694. https://doi.org/10.1080/07481187.2020.1762263
Organisation for Economic Co-operation and Development. (2023, February 7). Time for Better Care at the End of Life. https://doi.org/10.1787/2074319x
Othman, E. H., Khalaf, I., & Zeilani, R. (2019). Patients’ involvement in decision making at end of life: A systematic review of literature. Open Journal of Nursing, 9(10), 1106–1121. https://doi.org/10.4236/ojn.2019.910081
Park, E. J., Jo, M., Park, M., & Kang, S. J. (2021). Advance care planning for older adults in community-based settings: An umbrella review. International journal of older people nursing, 16(5), e12397. https://doi.org/10.1111/opn.12397
Park, H. Y., Kim, Y. A., Sim, J. A., Lee, J., Ryu, H., Lee, J. L., Maeng, C. H., Kwon, J. H., Kim, Y. J., Nam, E. M., Shim, H. J., Song, E. K., Jung, K. H., Kang, E. J., Kang, J. H., & Yun, Y. H. (2019). Attitudes of the General Public, Cancer Patients, Family Caregivers, and Physicians Toward Advance Care Planning: A Nationwide Survey Before the Enforcement of the Life-Sustaining Treatment Decision-Making Act. Journal of pain and symptom management, 57(4), 774–782. https://doi.org/10.1016/j.jpainsymman.2018.12.332
Parnell, T. A., Stichler, J. F., Barton, A. J., Loan, L. A., Boyle, D. K., & Allen, P. E. (2019). A concept analysis of health literacy. Nursing forum, 54(3), 315–327. https://doi.org/10.1111/nuf.12331
Patterson, R. M., & Hazelwood, M. A. (2022). Developing end of life literacy through public education. In J. Abel, & A. Kellehear (Eds.), Oxford Textbook of Public Health Palliative Care (pp. 126–136). Oxford University Press. https://doi.org/10.1093/med/9780198862994.003.0014
Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, & Khalil, H. Scoping Reviews (2020). Aromataris E, Lockwood C, Porritt K, Pilla B, Jordan Z, editors. JBI Manual for Evidence Synthesis. The Joanna Briggs Institute; 2024. https://synthesismanual.jbi.global. https://doi.org/10.46658/JBIMES-24-09
Plaisance, A., Morin, M., Turcotte, S., Laflamme, B., Heyland, D. K., & Leblanc, A. (2023). A Quality Assessment of Goals of Care Forms in a Sample of Older Patients in Various Care Settings in Quebec, Canada. Cureus, 15(1), e33872. https://doi.org/10.7759/cureus.33872
Plaisance, A., Tapp, D., Rousseau, E., Bravo, G., & Masella, J. (2023). A pragmatic review of the general population’s attitude, knowledge and representations with regard to continuous palliative sedation. Intervention, (156), 55–67. https://doi.org/10.7202/1097406ar
Prince-Paul, M., & DiFranco, E. (2017). Upstreaming and Normalizing Advance Care Planning Conversations-A Public Health Approach. Behavioral sciences (Basel, Switzerland), 7(2), 18. https://doi.org/10.3390/bs7020018
Rietjens, J. A. C., Sudore, R. L., Connolly, M., van Delden, J. J., Drickamer, M. A., Droger, M., van der Heide, A., Heyland, D. K., Houttekier, D., Janssen, D. J. A., Orsi, L., Payne, S., Seymour, J., Jox, R. J., Korfage, I. J., & European Association for Palliative Care (2017). Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. The Lancet. Oncology, 18(9), e543–e551. https://doi.org/10.1016/S1470-2045(17)30582-X
Robinson, E. L., Hart, B., & Sanders, S. (2019). It’s okay to talk about death: Exploring the end-of-life wishes of healthy young adults. Death studies, 43(6), 389–396. https://doi.org/10.1080/07481187.2018.1478913
Saint-Arnaud, J., & Roigt, D. (2024). Soins de fin de vie : qui décide ? Éditions du Boréal.
Sallnow, L., Smith, R., Ahmedzai, S. H., Bhadelia, A., Chamberlain, C., Cong, Y., Doble, B., Dullie, L., Durie, R., Finkelstein, E. A., Guglani, S., Hodson, M., Husebø, B. S., Kellehear, A., Kitzinger, C., Knaul, F. M., Murray, S. A., Neuberger, J., O’Mahony, S., Rajagopal, M. R., … Lancet Commission on the Value of Death (2022). Report of the Lancet Commission on the Value of Death: bringing death back into life. Lancet (London, England), 399(10327), 837–884. https://doi.org/10.1016/S0140-6736(21)02314-X
Sedini, C., Biotto, M., Crespi Bel’skij, L. M., Moroni Grandini, R. E., & Cesari, M. (2022). Advance care planning and advance directives: an overview of the main critical issues. Aging clinical and experimental research, 34(2), 325–330. https://doi.org/10.1007/s40520-021-02001-y
Spoljar, D., Curkovic, M., Gastmans, C., Gordijn, B., Vrkic, D., Jozepovic, A., Vuletic, S., Tonkovic, D., & Borovecki, A. (2020). Ethical content of expert recommendations for end-of-life decision-making in intensive care units: A systematic review. Journal of critical care, 58, 10–19. https://doi.org/10.1016/j.jcrc.2020.03.010
Tan, M., Ding, J., Johnson, C. E., Cook, A., Huang, C., Xiao, L., & Tang, S. (2024). Stages of readiness for advance care planning: Systematic review and meta-analysis of prevalence rates and associated factors. International journal of nursing studies, 151, 104678. https://doi.org/10.1016/j.ijnurstu.2023.104678
The Joanna Briggs Institute. (2015). Joanna Briggs Institute Reviewers’ Manual: 2015 edition / Supplement. https://reben.com.br/revista/wp-content/uploads/2020/10/Scoping.pdf
Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., Lewin, S., … Straus, S. E. (2018). PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Annals of internal medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
United Nations Population Fund. (2024, février). État de la population mondiale 2023. Huit milliards d’humains, un horizon infini de possibilités : défendre les droits et la liberté de choix. https://doi.org/10.18356/9789210027144
Van Pevenage, I., Reiss, M., Lareau, J., & Raymond, M. (2024). Chez soi jusqu’à la fin ? Désirs et motivations des Québécois et Québécoises âgées quant à leur lieu de fin de vie et de décès. Rapport Statistique. Centre de recherche et d’expertise en gérontologie sociale du CIUSSS du Centre-Ouest-de-l’Île-de-Montréal. https://creges.ca/wp-content/uploads/2024/08/2024-sondage-fin-de-vie-et-deces-Quebec.pdf
Veritas Health Innovation. (2025). Covidence [Computer software]. https://www.covidence.org/