Abstract
BackgroundEven 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.MethodsThe 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.ResultsAfter 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.ConclusionsBased 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.
Highlights
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
This article outlines the development of a novel Swedish palliative care guide (S-PCG) intending to improve the end of life care for adult patients irrespective of diagnosis
The extensive and expansive stepwise multi-unit and interprofessional testing and evaluation procedures resulted in Swedish Palliative Care Guide (S-PCG) Version 1.0, which was launched in September 2016
Summary
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. 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. For many patients with terminal illness, access to and quality of palliative care is substandard and random [1,2,3]. This leads to unnecessary suffering for patients and families left without adequate interventions and support. Interventions that are most likely to attain behavioural change in health care often combines: restructuring of practice, altering of norms and attitudes (e.g. through education), together with external audits and feedback [19] and sensemaking [20]
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