Using a Structured Care Guide Reduces End of Life Suffering—A Population-Based Cohort Study
Sofia Norén, Christel Hedman, Dröfn Birgisdóttir, Anette Duarte, Sixten Elmstedt, Marlene Malmström, Oskar Hagberg, Carl Johan Fürst, Maria E.C. SchelinBackground:
The Swedish Palliative Care Guide is a person-centered decision-support tool (including care plans). The aim is to provide guidance to high-quality care throughout the palliative and end-of-life trajectory. Currently, it is used in >600 care units across Sweden, but scientific evaluation of its effects is lacking.
Objectives:
The aim of this study was to investigate whether use of the Swedish Palliative Care Guide increases quality of end-of-life care.
Methods and Design:
In this population-based study using data from the Swedish Register of Palliative Care, all registered deaths between 2015 and 2022 were included. Registration was carried out by staff at the care unit where the patient died. Deaths were categorized into four groups based on the implementation process of the Care Guide: pre-implementation (0–2 years before implementation), implementation (first year of implementation), established use (>1 year after implementation) and no use. The primary analysis compared pre-implementation with established use across 11 outcomes measures encompassing communication, symptom relief, and presence at the time of death.
Results:
A total of 397,761 deaths in 5524 care units were included. Nine of 11 outcomes showed statistically significant improvement in the established use compared with the pre-implementation. The largest percentage change was for end-of-life conversation with patient (77.5% vs. 86.8%) and relief of confusion (30.5% vs. 38.4%). The effect was more pronounced within primary palliative care.
Conclusion:
Use of the Swedish Palliative Care Guide, a decision-support tool adapted for all diagnoses, increased the quality of care of the patient who are dying, particularly in primary palliative care.