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...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2021-11-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-021-00874-4 |
| _version_ | 1818651705688981504 |
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| 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 |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-12-17T02:10:22Z |
| format | Article |
| id | doaj.art-1712f1077d874b27b00a0a85e19b6f4d |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-17T02:10:22Z |
| publishDate | 2021-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-1712f1077d874b27b00a0a85e19b6f4d2022-12-21T22:07:33ZengBMCBMC Palliative Care1472-684X2021-11-0120111210.1186/s12904-021-00874-4A novel care guide for personalised palliative care – a national initiative for improved quality of careDröfn Birgisdóttir0Anette Duarte1Anna Dahlman2Bengt Sallerfors3Birgit H. Rasmussen4Carl Johan Fürst5Faculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lund UniversityThe Institute for Palliative Care, Lund University and Region SkåneFaculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lund UniversityFaculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lund UniversityThe Institute for Palliative Care, Lund University and Region SkåneFaculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lund UniversityAbstract 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.https://doi.org/10.1186/s12904-021-00874-4Quality improvementClinical practice guidelinesDecision supportPalliative careDyingClinical pathway |
| spellingShingle | 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 BMC Palliative Care Quality improvement Clinical practice guidelines Decision support Palliative care Dying Clinical pathway |
| title | 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_short | 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 |
| topic | Quality improvement Clinical practice guidelines Decision support Palliative care Dying Clinical pathway |
| url | https://doi.org/10.1186/s12904-021-00874-4 |
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