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End-of-life preparedness and emotional suffering in patients and caregivers: Findings from an international cohort study spanning the period before and after death

Meier, Clément ; Veloso, Verónica Inés ; Carballo, Bélen ; Martín, Eva Víbora ; Barnestein-Fonseca, Pilar ; Birgisdóttir, Dröfn LU orcid ; Sigurðardóttir, Valgerdur ; Korfage, Ida J ; van der Heide, Agnes and Tripodoro, Vilma (2026) In Palliative Medicine 40(3). p.369-380
Abstract
Background:
Preparing for the end of life is believed to help mitigate emotional suffering for both patients and their caregivers. However, empirical evidence on the emotional benefits of feeling prepared for death remains limited.

Aim:
This study uses data from the international iLIVE project to examine how perceived end-of-life preparedness is associated with emotional suffering among patients and their caregivers before and after death.

Design:
Data from a prospective cohort study from the iLIVE project (2020–2023) were analyzed. Participants were surveyed at baseline, 1-month follow-up, and where possible after the patient’s death. The association between end-of-life preparedness (ICECAP-SCM/CPM) and... (More)
Background:
Preparing for the end of life is believed to help mitigate emotional suffering for both patients and their caregivers. However, empirical evidence on the emotional benefits of feeling prepared for death remains limited.

Aim:
This study uses data from the international iLIVE project to examine how perceived end-of-life preparedness is associated with emotional suffering among patients and their caregivers before and after death.

Design:
Data from a prospective cohort study from the iLIVE project (2020–2023) were analyzed. Participants were surveyed at baseline, 1-month follow-up, and where possible after the patient’s death. The association between end-of-life preparedness (ICECAP-SCM/CPM) and emotional suffering (ICECAP-SCM/CPM & HGRC) was examined using OLS regression models, adjusting for socio-demographic and health-related covariates.

Setting/participant:
Data came from 1041 patients and 496 caregivers across 11 countries, enrolled in the iLIVE project.

Results:
Feeling fully prepared for the end of life was significantly associated with lower levels of emotional suffering for both patients and caregivers. Among patients, preparedness was linked to reduced emotional suffering at baseline and follow-up. For caregivers, these associations were even more pronounced at baseline, follow-up, and after the patient’s death.

Conclusions:
Perceived preparedness for the end of life was associated with lower emotional suffering for patients approaching death and their caregivers, both during the illness and after bereavement. These findings suggest that encouraging end-of-life planning may support emotional well-being across the final phase of life and beyond. (Less)
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author
; ; ; ; ; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
End-of-life preparedness, Emotional suffering, Patients, Caregivers, End-of-life care, Cohort study, Palliative care
in
Palliative Medicine
volume
40
issue
3
pages
369 - 380
publisher
SAGE Publications
external identifiers
  • pmid:41527771
  • scopus:105031315147
ISSN
0269-2163
DOI
10.1177/02692163251405361
language
English
LU publication?
yes
id
36d132bb-58b3-4210-bab8-16d274f54da1
date added to LUP
2026-03-13 18:16:49
date last changed
2026-03-18 16:06:16
@article{36d132bb-58b3-4210-bab8-16d274f54da1,
  abstract     = {{Background:<br/>Preparing for the end of life is believed to help mitigate emotional suffering for both patients and their caregivers. However, empirical evidence on the emotional benefits of feeling prepared for death remains limited.<br/><br/>Aim:<br/>This study uses data from the international iLIVE project to examine how perceived end-of-life preparedness is associated with emotional suffering among patients and their caregivers before and after death.<br/><br/>Design:<br/>Data from a prospective cohort study from the iLIVE project (2020–2023) were analyzed. Participants were surveyed at baseline, 1-month follow-up, and where possible after the patient’s death. The association between end-of-life preparedness (ICECAP-SCM/CPM) and emotional suffering (ICECAP-SCM/CPM &amp; HGRC) was examined using OLS regression models, adjusting for socio-demographic and health-related covariates.<br/><br/>Setting/participant:<br/>Data came from 1041 patients and 496 caregivers across 11 countries, enrolled in the iLIVE project.<br/><br/>Results:<br/>Feeling fully prepared for the end of life was significantly associated with lower levels of emotional suffering for both patients and caregivers. Among patients, preparedness was linked to reduced emotional suffering at baseline and follow-up. For caregivers, these associations were even more pronounced at baseline, follow-up, and after the patient’s death.<br/><br/>Conclusions:<br/>Perceived preparedness for the end of life was associated with lower emotional suffering for patients approaching death and their caregivers, both during the illness and after bereavement. These findings suggest that encouraging end-of-life planning may support emotional well-being across the final phase of life and beyond.}},
  author       = {{Meier, Clément and Veloso, Verónica Inés and Carballo, Bélen and Martín, Eva Víbora and Barnestein-Fonseca, Pilar and Birgisdóttir, Dröfn and Sigurðardóttir, Valgerdur and Korfage, Ida J and van der Heide, Agnes and Tripodoro, Vilma}},
  issn         = {{0269-2163}},
  keywords     = {{End-of-life preparedness; Emotional suffering; Patients; Caregivers; End-of-life care; Cohort study; Palliative care}},
  language     = {{eng}},
  month        = {{01}},
  number       = {{3}},
  pages        = {{369--380}},
  publisher    = {{SAGE Publications}},
  series       = {{Palliative Medicine}},
  title        = {{End-of-life preparedness and emotional suffering in patients and caregivers: Findings from an international cohort study spanning the period before and after death}},
  url          = {{http://dx.doi.org/10.1177/02692163251405361}},
  doi          = {{10.1177/02692163251405361}},
  volume       = {{40}},
  year         = {{2026}},
}