Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study

PACE; Rose Miranda; Jenny T van der Steen; Tinne Smets; Nele Van den Noortgate; Luc Deliens; Sheila Payne; Marika Kylänen; Katarzyna Szczerbińska; Giovanni Gambassi; Lieve Van den Block

doi:10.1002/gps.5290

Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study

PACE, Rose Miranda, Jenny T van der Steen, Tinne Smets, Nele Van den Noortgate, Luc Deliens, Sheila Payne, Marika Kylänen, Katarzyna Szczerbińska, Giovanni Gambassi, Lieve Van den Block

Research output: Contribution to journal › Article › peer-review

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Abstract

OBJECTIVES: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.

METHODS: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, Netherlands, Poland and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments.

RESULTS: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24-27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = 0.03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia and 48% in residents without dementia (P < 0.001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = 0.04; other stages of dementia, P = 0.04; without dementia, P < 0.001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < 0.001) and without dementia (P = 0.003), while the presence and severity of dementia moderated this association (P = 0.03). Developing "other clinical events" was not associated with comfort.

CONCLUSIONS: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia. This article is protected by copyright. All rights reserved.

Original language	English
Pages (from-to)	719-727
Number of pages <span style="color:red"p> <font size="1.5"> ✽ </span> </font>	9
Journal	International Journal of Geriatric Psychiatry
Volume	35
Issue number	7
Early online date	2020
DOIs	https://doi.org/10.1002/gps.5290
Publication status	Published - Jul 2020

Bibliographical note

Funding Information:
The authors thank all NHs and their staff for participating in this project; the Ministry of Science and Higher Education of Poland (decision NR3202/7.PR/2014/2 dated November 25, 2014); the ENRICH network for their support in recruiting NHs in England; Nanja van Dop for data collection in Belgium and for assistance in data cleaning; and Jane Ruthven for language editing.

Funding Information:
European Union's Seventh Framework Programme (FP7/2007e2013), Grant/Award Number: 603111; Marie Curie Innovative Training Network (ITN) action, H2020\u2010MSCA\u2010ITN\u20102015, Grant/Award Number: 676265 Funding information

Publisher Copyright:
© 2020 John Wiley & Sons Ltd

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10.1002/gps.5290

2020_03_IntJGeriatricPsychiatry_MirandaRAccepted author manuscript, 354 KB

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PACE, Miranda, R., van der Steen, J. T., Smets, T., Van den Noortgate, N., Deliens, L., Payne, S., Kylänen, M., Szczerbińska, K., Gambassi, G., & Van den Block, L. (2020). Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study. International Journal of Geriatric Psychiatry, 35(7), 719-727. https://doi.org/10.1002/gps.5290

PACE ; Miranda, Rose ; van der Steen, Jenny T ; Smets, Tinne ; Van den Noortgate, Nele ; Deliens, Luc ; Payne, Sheila ; Kylänen, Marika ; Szczerbińska, Katarzyna ; Gambassi, Giovanni ; Van den Block, Lieve. / Comfort and clinical events at the end of life of nursing home residents with and without dementia : The six-country epidemiological PACE study. In: International Journal of Geriatric Psychiatry. 2020 ; Vol. 35, No. 7. pp. 719-727.

@article{8681b189921743768a9f6afb4528ab3b,

title = "Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study",

abstract = "OBJECTIVES: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.METHODS: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, Netherlands, Poland and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments.RESULTS: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24-27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = 0.03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia and 48% in residents without dementia (P < 0.001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = 0.04; other stages of dementia, P = 0.04; without dementia, P < 0.001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < 0.001) and without dementia (P = 0.003), while the presence and severity of dementia moderated this association (P = 0.03). Developing {"}other clinical events{"} was not associated with comfort.CONCLUSIONS: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia. This article is protected by copyright. All rights reserved.",

author = "PACE and Rose Miranda and {van der Steen}, {Jenny T} and Tinne Smets and {Van den Noortgate}, Nele and Luc Deliens and Sheila Payne and Marika Kyl{\"a}nen and Katarzyna Szczerbi{\'n}ska and Giovanni Gambassi and {Van den Block}, Lieve",

note = "Funding Information: The authors thank all NHs and their staff for participating in this project; the Ministry of Science and Higher Education of Poland (decision NR3202/7.PR/2014/2 dated November 25, 2014); the ENRICH network for their support in recruiting NHs in England; Nanja van Dop for data collection in Belgium and for assistance in data cleaning; and Jane Ruthven for language editing. Funding Information: European Union's Seventh Framework Programme (FP7/2007e2013), Grant/Award Number: 603111; Marie Curie Innovative Training Network (ITN) action, H2020\u2010MSCA\u2010ITN\u20102015, Grant/Award Number: 676265 Funding information Publisher Copyright: {\textcopyright} 2020 John Wiley & Sons Ltd",

year = "2020",

month = jul,

doi = "10.1002/gps.5290",

language = "English",

volume = "35",

pages = "719--727",

journal = "International Journal of Geriatric Psychiatry",

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PACE, Miranda, R, van der Steen, JT, Smets, T, Van den Noortgate, N, Deliens, L, Payne, S, Kylänen, M, Szczerbińska, K, Gambassi, G & Van den Block, L 2020, 'Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study', International Journal of Geriatric Psychiatry, vol. 35, no. 7, pp. 719-727. https://doi.org/10.1002/gps.5290

Comfort and clinical events at the end of life of nursing home residents with and without dementia : The six-country epidemiological PACE study. / PACE ; Miranda, Rose; van der Steen, Jenny T; Smets, Tinne; Van den Noortgate, Nele; Deliens, Luc; Payne, Sheila; Kylänen, Marika; Szczerbińska, Katarzyna; Gambassi, Giovanni; Van den Block, Lieve.

In: International Journal of Geriatric Psychiatry, Vol. 35, No. 7, 07.2020, p. 719-727.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Comfort and clinical events at the end of life of nursing home residents with and without dementia

T2 - The six-country epidemiological PACE study

AU - PACE

AU - Miranda, Rose

AU - van der Steen, Jenny T

AU - Smets, Tinne

AU - Van den Noortgate, Nele

AU - Deliens, Luc

AU - Payne, Sheila

AU - Kylänen, Marika

AU - Szczerbińska, Katarzyna

AU - Gambassi, Giovanni

AU - Van den Block, Lieve

N1 - Funding Information: The authors thank all NHs and their staff for participating in this project; the Ministry of Science and Higher Education of Poland (decision NR3202/7.PR/2014/2 dated November 25, 2014); the ENRICH network for their support in recruiting NHs in England; Nanja van Dop for data collection in Belgium and for assistance in data cleaning; and Jane Ruthven for language editing. Funding Information: European Union's Seventh Framework Programme (FP7/2007e2013), Grant/Award Number: 603111; Marie Curie Innovative Training Network (ITN) action, H2020\u2010MSCA\u2010ITN\u20102015, Grant/Award Number: 676265 Funding information Publisher Copyright: © 2020 John Wiley & Sons Ltd

PY - 2020/7

Y1 - 2020/7

N2 - OBJECTIVES: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.METHODS: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, Netherlands, Poland and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments.RESULTS: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24-27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = 0.03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia and 48% in residents without dementia (P < 0.001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = 0.04; other stages of dementia, P = 0.04; without dementia, P < 0.001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < 0.001) and without dementia (P = 0.003), while the presence and severity of dementia moderated this association (P = 0.03). Developing "other clinical events" was not associated with comfort.CONCLUSIONS: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia. This article is protected by copyright. All rights reserved.

AB - OBJECTIVES: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.METHODS: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, Netherlands, Poland and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments.RESULTS: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24-27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = 0.03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia and 48% in residents without dementia (P < 0.001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = 0.04; other stages of dementia, P = 0.04; without dementia, P < 0.001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < 0.001) and without dementia (P = 0.003), while the presence and severity of dementia moderated this association (P = 0.03). Developing "other clinical events" was not associated with comfort.CONCLUSIONS: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia. This article is protected by copyright. All rights reserved.

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U2 - 10.1002/gps.5290

DO - 10.1002/gps.5290

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VL - 35

SP - 719

EP - 727

JO - International Journal of Geriatric Psychiatry

JF - International Journal of Geriatric Psychiatry

SN - 0885-6230

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Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study

Abstract

Bibliographical note

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SRP4: Strategic Research Programme: End-of-life in cancer and non-cancer patients: public health, health services and clinical research. Addressing present and future challenges in palliative care.

Cite this

Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study

Abstract

Bibliographical note

Access to Document

Other files and links

Fingerprint

Projects

SRP4: Strategic Research Programme: End-of-life in cancer and non-cancer patients: public health, health services and clinical research. Addressing present and future challenges in palliative care.

Cite this