To Örebro University

Patients near death being transported to emergency care despite receiving specialized palliative home care - A registry study

Background: A significant proportion of patients who receive palliative home care express a preference for dying at home, even when the symptoms of their disease deteriorate. Despite this, a large number of patients die in hospital, suggesting that patients are transported from home to emergency care. These transports can mean that dying patients end up in the emergency department, a place that is less suited to end-of-life care. The emergency department environment poses great challenges for emergency nurses trying to care for patients near death. Lack of space, time and staff are cited as the main barriers.   

The aim of this study was to map data on patients near death who had received specialized palliative home care and were transported to hospitals in Sweden.

Method: A national retrospective cross-sectional study was conducted using data from the Swedish Register of Palliative Care. The study included patients aged 18 years or above who were enrolled in specialized palliative home care and who died between 1 November 2015 and 31 October 2022 (n=39,698). Descriptive statistics were utilized to contrast patients who were transported to hospital and subsequently died within seven days of arrival, with patients who were not transported or transported earlier than seven days before death.

Results: A total of 7,383 patients were identified as having died within seven days of being transported from specialized palliative home care to a hospital or other care unit. The majority (74%) were admitted to a specialized palliative inpatient care unit, 23% to a non-specialized palliative inpatient care unit, and 3% to additional care units. The majority of these patients died within one to two days of arrival at the hospital. No clinical relevance was observed in the comparison of transported patients with non-transported patients with regard to sex, age, or diagnosis. However, transported patients exhibited a higher prevalence of dyspnoea (31% vs. 23%, p <0.001) and anxiety (60% vs. 57%, p <0.001). The simultaneous occurrence of multiple symptoms (e.g., confusion/anxiety, pain/severe pain, dyspnoea/respiratory secretion) was significantly more prevalent in the transported group (27% vs. 25%).

Discussion & Conclusions: A significant proportion of patients enrolled in specialized palliative home care were transported to hospital and subsequently died there. The majority of patients died within one or two days of admission. Complex symptoms were present, and not all patients were admitted to a specialized palliative inpatient care unit. Some commonalities, such as symptoms and symptom burden, can be observed in the patients who were transported. However, further studies are required to identify the causal relationship between these transports. Our study visibilises a phenomenon that can be experienced by the involved patients, relatives, and healthcare personnel as a major event in a vulnerable situation. We see a necessity to gain a deeper understanding of the underlying reasons for this type of transport and whether they are compatible with good palliative care and a dignified death.