Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms

Abstract Background Recognizing impending death in patients with neurological diseases presents challenges for nurses and other healthcare professionals. This study aimed to identify nursing contribution to end-of-life (EOL) care decision-making for patients with neurological diseases in an acute ho...

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Main Authors: Gudrun Jonsdottir, Runar Vilhjalmsson, Valgerdur Sigurdardottir, Haukur Hjaltason, Marianne Elisabeth Klinke, Helga Jonsdottir
Format: Article
Language:English
Published: BMC 2025-03-01
Series:BMC Nursing
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Online Access:https://doi.org/10.1186/s12912-025-02897-1
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author Gudrun Jonsdottir
Runar Vilhjalmsson
Valgerdur Sigurdardottir
Haukur Hjaltason
Marianne Elisabeth Klinke
Helga Jonsdottir
author_facet Gudrun Jonsdottir
Runar Vilhjalmsson
Valgerdur Sigurdardottir
Haukur Hjaltason
Marianne Elisabeth Klinke
Helga Jonsdottir
author_sort Gudrun Jonsdottir
collection DOAJ
description Abstract Background Recognizing impending death in patients with neurological diseases presents challenges for nurses and other healthcare professionals. This study aimed to identify nursing contribution to end-of-life (EOL) care decision-making for patients with neurological diseases in an acute hospital ward and to compare signs and symptoms among subgroups of patients. Methods In this retrospective study, we analyzed data from 209 patient health records using the Neurological End-Of-Life Care Assessment Tool to evaluate the care in the last 3 to 7 days of life. Key aspects included the need for EOL care, EOL care decision-making, signs and symptoms of imminent death, and communication with relatives. The patient records pertain to patients who died in an acute neurological ward between January 2011 and August 2020; 123 with ischemic stroke, 48 with hemorrhagic stroke, 27 with amyotrophic lateral sclerosis [ALS], and 11 with Parkinson’s disease or extrapyramidal and movement disorders [PDoed]. Both descriptive and inferential statistical analyses were performed to analyze the data. Results Nurses identified the need for EOL care in 36% of cases and contributed to EOL decision-making as information brokers (15%), advocates (6%), and supporters (6%). They identified disease progression in 44% of the cases. The mean number of signs and symptoms in both the acute and progressive disease groups was 6.5 and ranged from 1 to 14. Patients with stroke without a documented EOL decision had more severe symptoms, including respiratory congestion (68%) and dyspnea (37%), than those with EOL decision. A higher frequency of no food intake was documented in patients with stroke receiving EOL care (p = 0.007) compared to those without. Among patients with ALS or PDoed, those with EOL decision showed a trend toward a higher frequency of unconsciousness or limited consciousness than those without EOL decision (p = 0.067). For all groups of patients, conversations with relatives occurred in 85% instances and family meetings in 93%. Conclusions Nurses made substantial contributions to EOL care decision-making for patients with neurological diseases. To improve early identification of imminent death in patients with neurological diseases in acute hospital wards, healthcare professionals must investigate barriers contributing to delayed recognition. Clinical trial number Not applicable
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issn 1472-6955
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publishDate 2025-03-01
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spelling doaj-art-838a9748a3dc4b2fa1089747ac79bbfe2025-08-20T02:56:20ZengBMCBMC Nursing1472-69552025-03-0124111110.1186/s12912-025-02897-1Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptomsGudrun Jonsdottir0Runar Vilhjalmsson1Valgerdur Sigurdardottir2Haukur Hjaltason3Marianne Elisabeth Klinke4Helga Jonsdottir5Faculty of Nursing and Midwifery, School of Health Sciences, University of IcelandFaculty of Nursing and Midwifery, School of Health Sciences, University of IcelandPalliative Care Unit, Landspitali, University Hospital of IcelandFaculty of Medicine, School of Health Sciences, University of IcelandFaculty of Nursing and Midwifery, School of Health Sciences, University of IcelandFaculty of Nursing and Midwifery, School of Health Sciences, University of IcelandAbstract Background Recognizing impending death in patients with neurological diseases presents challenges for nurses and other healthcare professionals. This study aimed to identify nursing contribution to end-of-life (EOL) care decision-making for patients with neurological diseases in an acute hospital ward and to compare signs and symptoms among subgroups of patients. Methods In this retrospective study, we analyzed data from 209 patient health records using the Neurological End-Of-Life Care Assessment Tool to evaluate the care in the last 3 to 7 days of life. Key aspects included the need for EOL care, EOL care decision-making, signs and symptoms of imminent death, and communication with relatives. The patient records pertain to patients who died in an acute neurological ward between January 2011 and August 2020; 123 with ischemic stroke, 48 with hemorrhagic stroke, 27 with amyotrophic lateral sclerosis [ALS], and 11 with Parkinson’s disease or extrapyramidal and movement disorders [PDoed]. Both descriptive and inferential statistical analyses were performed to analyze the data. Results Nurses identified the need for EOL care in 36% of cases and contributed to EOL decision-making as information brokers (15%), advocates (6%), and supporters (6%). They identified disease progression in 44% of the cases. The mean number of signs and symptoms in both the acute and progressive disease groups was 6.5 and ranged from 1 to 14. Patients with stroke without a documented EOL decision had more severe symptoms, including respiratory congestion (68%) and dyspnea (37%), than those with EOL decision. A higher frequency of no food intake was documented in patients with stroke receiving EOL care (p = 0.007) compared to those without. Among patients with ALS or PDoed, those with EOL decision showed a trend toward a higher frequency of unconsciousness or limited consciousness than those without EOL decision (p = 0.067). For all groups of patients, conversations with relatives occurred in 85% instances and family meetings in 93%. Conclusions Nurses made substantial contributions to EOL care decision-making for patients with neurological diseases. To improve early identification of imminent death in patients with neurological diseases in acute hospital wards, healthcare professionals must investigate barriers contributing to delayed recognition. Clinical trial number Not applicablehttps://doi.org/10.1186/s12912-025-02897-1Palliative careEnd-of-life careTerminal careProgressive neurological diseasesStrokeSigns and symptoms
spellingShingle Gudrun Jonsdottir
Runar Vilhjalmsson
Valgerdur Sigurdardottir
Haukur Hjaltason
Marianne Elisabeth Klinke
Helga Jonsdottir
Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms
BMC Nursing
Palliative care
End-of-life care
Terminal care
Progressive neurological diseases
Stroke
Signs and symptoms
title Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms
title_full Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms
title_fullStr Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms
title_full_unstemmed Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms
title_short Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms
title_sort nursing contribution to end of life care decision making in patients with neurological diseases on an acute hospital ward documentation of signs and symptoms
topic Palliative care
End-of-life care
Terminal care
Progressive neurological diseases
Stroke
Signs and symptoms
url https://doi.org/10.1186/s12912-025-02897-1
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