{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,8,2]],"date-time":"2025-08-02T19:39:49Z","timestamp":1754163589110,"version":"3.41.2"},"reference-count":34,"publisher":"Cambridge University Press (CUP)","license":[{"start":{"date-parts":[[2025,7,31]],"date-time":"2025-07-31T00:00:00Z","timestamp":1753920000000},"content-version":"unspecified","delay-in-days":211,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Pall Supp Care"],"published-print":{"date-parts":[[2025]]},"abstract":"<jats:title>Abstract<\/jats:title>\n\t  <jats:sec id=\"S1478951525100278_sec1a\">\n\t    <jats:title>Objectives<\/jats:title>\n\t    <jats:p>The concept of total suffering is widely recognized in palliative care (PC), encompassing a range of interconnected and complex factors that collectively shape the evolving and individualized experience of a patient\u2019s illness journey. Studies on will to live (WtL) in terminally ill patients have demonstrated its variability over time and various factors that influence these changes.<\/jats:p>\n\t  <\/jats:sec>\n\t  <jats:sec id=\"S1478951525100278_sec2b\">\n\t    <jats:title>Methods<\/jats:title>\n\t    <jats:p>To objectively investigate the concept of total suffering and WtL; including their fluctuation over time and associations with sociodemographic, clinical, physical, and psychological symptoms in a sample of individuals with life-limiting conditions receiving PC. This multicenter Iberian study involved 3 centers in Portugal and 1 in Spain. A total of 107 individuals with life-limiting conditions consented to participate. To capture the dynamic and multifaceted components of total suffering, we had each participant completed the Edmonton Symptom Assessment Scale (ESAS) along an additional WtL visual analogue once daily over a 30-day period.<\/jats:p>\n\t  <\/jats:sec>\n\t  <jats:sec id=\"S1478951525100278_sec3c\">\n\t    <jats:title>Results<\/jats:title>\n\t    <jats:p>WtL demonstrated various patterns over time. While some patterns reflected relative stability, other demonstrated substantive fluctuation during the course of illness. Significant correlations were observed between WtL and all other ESAS items. Moderate positive correlations were found between WtL and total ESAS score and its physical and psychological sub-scores. Spearman\u2019s correlation coefficients between all physical and psychosocial items on the ESAS were statistically significant across all 45 correlations performed, with only 5 showing moderate strength; the remaining correlations were weaker.<\/jats:p>\n\t  <\/jats:sec>\n\t  <jats:sec id=\"S1478951525100278_sec4d\">\n\t    <jats:title>Significance of results<\/jats:title>\n\t    <jats:p>Evidence-based understanding of WtL is critical to improving care for patients who experience suffering toward end-of-life and their families. Further research is needed to inform and refine interventions targeting total suffering.<\/jats:p>\n\t  <\/jats:sec>","DOI":"10.1017\/s1478951525100278","type":"journal-article","created":{"date-parts":[[2025,7,31]],"date-time":"2025-07-31T07:08:21Z","timestamp":1753945701000},"update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study"],"prefix":"10.1017","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9283-5045","authenticated-orcid":false,"given":"Miguel","family":"Juli\u00e3o","sequence":"first","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1655-7391","authenticated-orcid":false,"given":"B\u00e1rbara","family":"Antunes","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0714-3058","authenticated-orcid":false,"given":"Carolina","family":"Sim\u00f5es","sequence":"additional","affiliation":[]},{"given":"Maria Ana","family":"Sobral","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0009-0006-2526-2009","authenticated-orcid":false,"given":"Andr\u00e9","family":"Oliveira","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0009-0008-3339-5535","authenticated-orcid":false,"given":"Carla","family":"Melo","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1966-9308","authenticated-orcid":false,"given":"Marco","family":"Mendon\u00e7a","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9999-7290","authenticated-orcid":false,"given":"Milene","family":"Mendon\u00e7a Lima","sequence":"additional","affiliation":[]},{"given":"Giovanni","family":"Cerullo","sequence":"additional","affiliation":[]},{"given":"Ana","family":"Carrancha","sequence":"additional","affiliation":[]},{"given":"Duarte da","family":"Silva Soares","sequence":"additional","affiliation":[]},{"given":"Daniela","family":"Artilheiro","sequence":"additional","affiliation":[]},{"given":"Maria de","family":"Lurdes Pradinhos","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6913-8882","authenticated-orcid":false,"given":"Esperanza Bego\u00f1a","family":"Garcia Navarro","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6526-593X","authenticated-orcid":false,"given":"Sonia","family":"Garc\u00eda Navarro","sequence":"additional","affiliation":[]},{"given":"Rosa","family":"P\u00e9rez Espina","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2823-8806","authenticated-orcid":false,"given":"Mathieu","family":"Bernard","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2711-8346","authenticated-orcid":false,"given":"Bianca Sakamoto Ribeiro","family":"Paiva","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6879-2778","authenticated-orcid":false,"given":"Marco Antonio","family":"de Oliveira","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2656-4704","authenticated-orcid":false,"given":"Harvey Max","family":"Chochinov","sequence":"additional","affiliation":[]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8745-0412","authenticated-orcid":false,"given":"Eduardo","family":"Bruera","sequence":"additional","affiliation":[]}],"member":"56","published-online":{"date-parts":[[2025,7,31]]},"reference":[{"key":"S1478951525100278_ref13","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2006.9.666"},{"key":"S1478951525100278_ref1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2006.9.658"},{"key":"S1478951525100278_ref14","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(11)70153-X"},{"volume-title":"Applied Statistics for the Behavioral Sciences","year":"2003","author":"Hinkle","key":"S1478951525100278_ref23"},{"key":"S1478951525100278_ref26","article-title":"The desire for death in Portuguese home-care palliative patients: retrospective analysis of the prevalence and associated factors","author":"Juli\u00e3o","year":"2020b","journal-title":"Palliative and Supportive Care"},{"key":"S1478951525100278_ref25","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2019.0137"},{"key":"S1478951525100278_ref33","doi-asserted-by":"publisher","DOI":"10.2190\/UQ2G-UGV1-3PPC-6387"},{"key":"S1478951525100278_ref19","doi-asserted-by":"publisher","DOI":"10.1177\/014662168701100107"},{"key":"S1478951525100278_ref24","doi-asserted-by":"publisher","DOI":"10.1177\/0269216306071799"},{"key":"S1478951525100278_ref2","unstructured":"Bernardo, A (2005) Avalia\u00e7\u00e3o de Sintomas em Cuidados Paliativos [MSc thesis]. 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