A novel care guide for personalised palliative care – a national initiative for improved quality of care

Abstract Background Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliati...

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Autores principales:	Dröfn Birgisdóttir, Anette Duarte, Anna Dahlman, Bengt Sallerfors, Birgit H. Rasmussen, Carl Johan Fürst
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Quality improvement Clinical practice guidelines Decision support Palliative care Dying Clinical pathway Special situations and conditions RC952-1245
Acceso en línea:	https://doaj.org/article/1712f1077d874b27b00a0a85e19b6f4d
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spelling	oai:doaj.org-article:1712f1077d874b27b00a0a85e19b6f4d2021-11-14T12:11:59ZA novel care guide for personalised palliative care – a national initiative for improved quality of care10.1186/s12904-021-00874-41472-684Xhttps://doaj.org/article/1712f1077d874b27b00a0a85e19b6f4d2021-11-01T00:00:00Zhttps://doi.org/10.1186/s12904-021-00874-4https://doaj.org/toc/1472-684XAbstract Background Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. Methods The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. Results After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included. Conclusions Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.Dröfn BirgisdóttirAnette DuarteAnna DahlmanBengt SallerforsBirgit H. RasmussenCarl Johan FürstBMCarticleQuality improvementClinical practice guidelinesDecision supportPalliative careDyingClinical pathwaySpecial situations and conditionsRC952-1245ENBMC Palliative Care, Vol 20, Iss 1, Pp 1-12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Quality improvement Clinical practice guidelines Decision support Palliative care Dying Clinical pathway Special situations and conditions RC952-1245
spellingShingle	Quality improvement Clinical practice guidelines Decision support Palliative care Dying Clinical pathway Special situations and conditions RC952-1245 Dröfn Birgisdóttir Anette Duarte Anna Dahlman Bengt Sallerfors Birgit H. Rasmussen Carl Johan Fürst A novel care guide for personalised palliative care – a national initiative for improved quality of care
description	Abstract Background Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. Methods The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. Results After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included. Conclusions Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.
format	article
author	Dröfn Birgisdóttir Anette Duarte Anna Dahlman Bengt Sallerfors Birgit H. Rasmussen Carl Johan Fürst
author_facet	Dröfn Birgisdóttir Anette Duarte Anna Dahlman Bengt Sallerfors Birgit H. Rasmussen Carl Johan Fürst
author_sort	Dröfn Birgisdóttir
title	A novel care guide for personalised palliative care – a national initiative for improved quality of care
title_short	A novel care guide for personalised palliative care – a national initiative for improved quality of care
title_full	A novel care guide for personalised palliative care – a national initiative for improved quality of care
title_fullStr	A novel care guide for personalised palliative care – a national initiative for improved quality of care
title_full_unstemmed	A novel care guide for personalised palliative care – a national initiative for improved quality of care
title_sort	novel care guide for personalised palliative care – a national initiative for improved quality of care
publisher	BMC
publishDate	2021
url	https://doaj.org/article/1712f1077d874b27b00a0a85e19b6f4d
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A novel care guide for personalised palliative care – a national initiative for improved quality of care

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