What palliative patients and their carers need at home and what a primary health care team can offer – first pilot study in Slovenia

Abstract Introduction Spending one’s last days and dying at home is a common wish of people with a life-limiting illness. Home-based palliative care is essentially organised at the primary level to meet the needs of palliative patients and their carers. The aim of this study was to identify the characteristics of home-based palliative care, focusing on those who identify palliative patients, what their needs are and how this affects their length of life and site of death. Methods This retrospective cohort study analysed routinely collected notes of patients enrolled in home-based palliative care between 2015 and 2021. Palliative care was provided by a primary health care team in a predominantly rural area. Results This study included 107 palliative patients, aged 71±11.4 years, 94% of whom had cancer. They were enrolled in palliative care by their primary care team or by hospital staff. The enrolment by hospital staff (3%) resulted in significantly shorter survival (p=0.008). Patients lived an average of 66 days, and 65% of patients died at home. Home-based palliative care was found to respond to both basic and complex palliative medical needs, but was weaker in addressing socio-economic, psychological or spiritual issues. Conclusion This exemplary primary-level palliative team provided home-based palliative care that has improved over the years in terms of all the observed quality indicators: early enrolment, the proportion of patients dying at home and the ability to address needs. Specialised mobile palliative teams, hospitals and other palliative care settings complement home-based palliative care.