Evidence map›Paper›PMID 40739928›Full record

ArticlePalliative & supportive care2025

Total suffering and will to live in persons with life-limiting diseases: Results from an Iberian multicenter study.

Miguel Julião, Bárbara Antunes, Carolina Simões, Maria Ana Sobral, André Oliveira, Carla Melo, Marco Mendonça, Milene Mendonça Lima, Giovanni Cerullo, Ana Carrancha and 11 more

Abstract readMulticenter Study
In one paragraph

Article in Palliative & supportive care, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Miguel JuliãoEquipa Comunitária de Suporte em Cuidados Paliativos PalCo, ULS Amadora/Sintra, Amadora, Portugal.ORCID https://orcid.org/0000-0001-9283-5045
Bárbara AntunesPrimary Care Unit - Department of Public Health and Primary care, University of Cambridge, Cambridge, UK.ORCID https://orcid.org/0000-0003-1655-7391
Carolina SimõesEquipa Comunitária de Suporte em Cuidados Paliativos PalCo, ULS Amadora/Sintra, Amadora, Portugal.ORCID https://orcid.org/0000-0003-0714-3058
Maria Ana SobralHospitalização Domiciliária Cuidados Paliativos CUF, Portugal.
André OliveiraUnidade de Cuidados Paliativos do Hospital do Divino Espírito Santo de Ponta Delgada, EPER, Ponta Delgada, Açores, Portugal.ORCID https://orcid.org/0009-0006-2526-2009
Carla MeloEquipa de Apoio Psicossocial do Hospital do Divino Espírito Santo de Ponta Delgada, EPER, Ponta Delgada, Açores, Portugal.ORCID https://orcid.org/0009-0008-3339-5535
Marco MendonçaUnidade de Cuidados Paliativos e Equipa de Apoio Psicossocial do Hospital do Divino Espírito Santo de Ponta Delgada, EPER, Ponta Delgada, Açores, Portugal.ORCID https://orcid.org/0000-0002-1966-9308
Milene Mendonça LimaEquipa Comunitária de Suporte em Cuidados Paliativos da Unidade de Saúde da Ilha de São Miguel, Ponta Delgada, Açores, Portugal.ORCID https://orcid.org/0000-0001-9999-7290
Giovanni CerulloServiço de Cuidados Paliativos, Unidade Hospitalar de Faro, Centro Hospitalar e Universitário do Algarve, Faro, Portugal.
Ana CarranchaEquipa Intrahospitalar de Suporte em Cuidados Paliativos, Unidade Hospitalar de Faro, Centro Hospitalar e Universitário do Algarve, Faro, Portugal.
Duarte da Silva SoaresUnidade Local de Saúde do Nordeste, Bragança, Portugal.
Daniela ArtilheiroEquipa Intrahospitalar e Unidade de Cuidados Paliativos da Unidade Hospitalar de Macedo de Cavaleiros da Unidade Local de Saúde do Nordeste, Bragança, Portugal.
Maria de Lurdes PradinhosEquipa Intrahospitalar e Unidade de Cuidados Paliativos da Unidade Hospitalar de Macedo de Cavaleiros da Unidade Local de Saúde do Nordeste, Bragança, Portugal.
Esperanza Begoña Garcia NavarroDepartment of Nursing, Director of Health, University of Huelva, Huelva, Spain.ORCID https://orcid.org/0000-0001-6913-8882
Sonia García NavarroPrimary Care Unit - Department of Nursing, University of Huelva, Huelva, Spain.ORCID https://orcid.org/0000-0001-6526-593X
Rosa Pérez EspinaPalliative Care Support Team, Juan Ramón Jiménez Hospital Area, Huelva, Spain.
Mathieu BernardService of Palliative and Supportive Care, Lausanne University Hospital, Lausanne, Switzerland.ORCID https://orcid.org/0000-0003-2823-8806
Bianca Sakamoto Ribeiro PaivaBarretos Cancer Hospital, Research Group on Palliative Care and Health-Related Quality of Life, Barretos, Brazil.ORCID https://orcid.org/0000-0002-2711-8346
Marco Antonio de OliveiraBarretos Cancer Hospital, Research Group on Palliative Care and Health-Related Quality of Life, Barretos, Brazil.ORCID https://orcid.org/0000-0001-6879-2778
Harvey Max ChochinovDepartment of Psychiatry, Research Institute of Oncology and Hematology, Cancer Care Manitoba, Manitoba, Canada.ORCID https://orcid.org/0000-0003-2656-4704
Eduardo BrueraDepartment of Palliative, Rehabilitation and Integrative Medicine, University of Texas MD Anderson Cancer Center, Houston, Texas.ORCID https://orcid.org/0000-0002-8745-0412

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesThe 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.

methodsTo 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.

resultsWtL 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

resultsEvidence-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.

Indexed as

Stress, PsychologicalTerminally IllAdultAgedAged, 80 and overFemaleHumansMaleMiddle AgedPalliative CarePortugalPsychometricsSpainSurveys and Questionnairesend of lifemulticenter studypalliative careTotal sufferingwill to live

Identifiers

PMID40739928
PMCPMC13166379

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.