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What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care

BACKGROUND: Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC). AIMS: To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home...

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Autores principales: Ullrich, Anneke, Hollburg, Wiebke, Schulz, Holger, Goldbach, Sven, Rommel, Annette, Müller, Marten, Kirsch, Denise, Kopplin-Foertsch, Katrin, Messerer, Julia, König, Louise, Schulz-Kindermann, Frank, Bokemeyer, Carsten, Oechsle, Karin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8939163/
https://www.ncbi.nlm.nih.gov/pubmed/35317813
http://dx.doi.org/10.1186/s12904-022-00928-1
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author Ullrich, Anneke
Hollburg, Wiebke
Schulz, Holger
Goldbach, Sven
Rommel, Annette
Müller, Marten
Kirsch, Denise
Kopplin-Foertsch, Katrin
Messerer, Julia
König, Louise
Schulz-Kindermann, Frank
Bokemeyer, Carsten
Oechsle, Karin
author_facet Ullrich, Anneke
Hollburg, Wiebke
Schulz, Holger
Goldbach, Sven
Rommel, Annette
Müller, Marten
Kirsch, Denise
Kopplin-Foertsch, Katrin
Messerer, Julia
König, Louise
Schulz-Kindermann, Frank
Bokemeyer, Carsten
Oechsle, Karin
author_sort Ullrich, Anneke
collection PubMed
description BACKGROUND: Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC). AIMS: To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish. METHODS: Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t(0)) and within the first 6 weeks (follow-up, t(1)) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all  wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t(0)-t(1)) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis. RESULTS: Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t(0), and 130 at t(1). In cross-sectional analyses, the presence of last wishes was higher at t(0) (67%) than at t(1) (59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t(0) (78% vs. 62%; p = .002), but not at t(1). Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t(0). Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t(0) (31%) and t(1) (39%). Themes did not differ between SPC settings, neither at t(0) nor at t(1). Longitudinal analyses (t(0)-t(1)) showed no significant intra-personal changes in the presence or any themes of last wishes over time. CONCLUSIONS: In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients’ last wishes, rather than setting-specific approaches, may be important.
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spelling pubmed-89391632022-03-23 What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care Ullrich, Anneke Hollburg, Wiebke Schulz, Holger Goldbach, Sven Rommel, Annette Müller, Marten Kirsch, Denise Kopplin-Foertsch, Katrin Messerer, Julia König, Louise Schulz-Kindermann, Frank Bokemeyer, Carsten Oechsle, Karin BMC Palliat Care Research BACKGROUND: Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC). AIMS: To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish. METHODS: Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t(0)) and within the first 6 weeks (follow-up, t(1)) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all  wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t(0)-t(1)) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis. RESULTS: Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t(0), and 130 at t(1). In cross-sectional analyses, the presence of last wishes was higher at t(0) (67%) than at t(1) (59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t(0) (78% vs. 62%; p = .002), but not at t(1). Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t(0). Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t(0) (31%) and t(1) (39%). Themes did not differ between SPC settings, neither at t(0) nor at t(1). Longitudinal analyses (t(0)-t(1)) showed no significant intra-personal changes in the presence or any themes of last wishes over time. CONCLUSIONS: In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients’ last wishes, rather than setting-specific approaches, may be important. BioMed Central 2022-03-22 /pmc/articles/PMC8939163/ /pubmed/35317813 http://dx.doi.org/10.1186/s12904-022-00928-1 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Ullrich, Anneke
Hollburg, Wiebke
Schulz, Holger
Goldbach, Sven
Rommel, Annette
Müller, Marten
Kirsch, Denise
Kopplin-Foertsch, Katrin
Messerer, Julia
König, Louise
Schulz-Kindermann, Frank
Bokemeyer, Carsten
Oechsle, Karin
What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care
title What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care
title_full What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care
title_fullStr What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care
title_full_unstemmed What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care
title_short What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care
title_sort what are the personal last wishes of people with a life-limiting illness? findings from a longitudinal observational study in specialist palliative care
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8939163/
https://www.ncbi.nlm.nih.gov/pubmed/35317813
http://dx.doi.org/10.1186/s12904-022-00928-1
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