Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study
Objectives: 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's illness journey. Studies on will to live (WtL) in terminally...
| Autores: | , , , |
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| Tipo de recurso: | artículo |
| Fecha de publicación: | 2025 |
| País: | España |
| Institución: | Universidad de Huelva (UHU) |
| Repositorio: | Arias Montano. Repositorio Institucional de la Universidad de Huelva |
| Idioma: | inglés |
| OAI Identifier: | oai:ariasmontano.uhu.es:10272/27467 |
| Acceso en línea: | https://hdl.handle.net/10272/27467 |
| Access Level: | acceso abierto |
| Palabra clave: | Total suffering End of life Multicenter study Palliative care Will to live 32 Ciencias Médicas |
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Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter studyJulião, MiguelGarcía Navarro, Esperanza BegoñaGarcía Navarro, SoniaBruera, EduardoTotal sufferingEnd of lifeMulticenter studyPalliative careWill to live32 Ciencias MédicasObjectives: 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's 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. Methods: 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. Results: 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's 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. Significance of results: 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.Cambridge University Press20252025-01-0120252025-01-01journal articlehttp://purl.org/coar/resource_type/c_6501VoRhttp://purl.org/coar/version/c_970fb48d4fbd8a85info:eu-repo/semantics/articleapplication/pdfhttps://hdl.handle.net/10272/27467reponame:Arias Montano. Repositorio Institucional de la Universidad de Huelvainstname:Universidad de Huelva (UHU)Inglésengopen accesshttp://purl.org/coar/access_right/c_abf2Attribution 4.0 Internationalhttp://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:ariasmontano.uhu.es:10272/274672026-06-02T14:58:11Z |
| dc.title.none.fl_str_mv |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| title |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| spellingShingle |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study Julião, Miguel Total suffering End of life Multicenter study Palliative care Will to live 32 Ciencias Médicas |
| title_short |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| title_full |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| title_fullStr |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| title_full_unstemmed |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| title_sort |
Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study |
| dc.creator.none.fl_str_mv |
Julião, Miguel García Navarro, Esperanza Begoña García Navarro, Sonia Bruera, Eduardo |
| author |
Julião, Miguel |
| author_facet |
Julião, Miguel García Navarro, Esperanza Begoña García Navarro, Sonia Bruera, Eduardo |
| author_role |
author |
| author2 |
García Navarro, Esperanza Begoña García Navarro, Sonia Bruera, Eduardo |
| author2_role |
author author author |
| dc.contributor.none.fl_str_mv |
|
| dc.subject.none.fl_str_mv |
Total suffering End of life Multicenter study Palliative care Will to live 32 Ciencias Médicas |
| topic |
Total suffering End of life Multicenter study Palliative care Will to live 32 Ciencias Médicas |
| description |
Objectives: 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's 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. Methods: 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. Results: 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's 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. Significance of results: 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. |
| publishDate |
2025 |
| dc.date.none.fl_str_mv |
2025 2025-01-01 2025 2025-01-01 |
| dc.type.none.fl_str_mv |
journal article http://purl.org/coar/resource_type/c_6501 VoR http://purl.org/coar/version/c_970fb48d4fbd8a85 |
| dc.type.openaire.fl_str_mv |
info:eu-repo/semantics/article |
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article |
| dc.identifier.none.fl_str_mv |
https://hdl.handle.net/10272/27467 |
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https://hdl.handle.net/10272/27467 |
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Inglés eng |
| language_invalid_str_mv |
Inglés |
| language |
eng |
| dc.rights.none.fl_str_mv |
open access http://purl.org/coar/access_right/c_abf2 Attribution 4.0 International http://creativecommons.org/licenses/by/4.0/ |
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info:eu-repo/semantics/openAccess |
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open access http://purl.org/coar/access_right/c_abf2 Attribution 4.0 International http://creativecommons.org/licenses/by/4.0/ |
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openAccess |
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application/pdf |
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Cambridge University Press |
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Cambridge University Press |
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reponame:Arias Montano. Repositorio Institucional de la Universidad de Huelva instname:Universidad de Huelva (UHU) |
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Universidad de Huelva (UHU) |
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Arias Montano. Repositorio Institucional de la Universidad de Huelva |
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Arias Montano. Repositorio Institucional de la Universidad de Huelva |
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