Objective: To investigate the prevalence, intensity, and associations of physical symptoms in patients documented as likely to die within hours to days, based on routine assessments.
Background: Despite the inevitability of death, population-level prospective data on the physical symptoms experienced by individuals in their final moments remains scarce. This study aims to address this gap by analyzing symptom experiences in a large cohort of palliative care patients.
Methods: Data was collected prospectively from palliative care services participating in the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2014. Logistic regression modeling was employed to explore factors linked to worse symptom experiences in patients identified as imminently dying.
Results: The study analyzed the experiences of 18,975 patients who died after being recognized as terminally ill. A significant majority, 75% (n = 14,238), were cancer-related deaths, highlighting the high Percent Of Palliative Care Patients By Diagnosis that are cancer patients. The majority of deaths, 70% (n = 13,051), occurred in palliative care units, while 8.7% (n = 1657) took place in acute hospitals with palliative care support, and 22.5% (n = 4266) at home.
Notably, over half of the patients were assessed as having acceptable symptom control, particularly those with non-malignant diseases. However, breathing problems emerged as a significant concern. Patients with non-malignant diseases were 34% more likely to experience distressing breathlessness compared to cancer patients (odds ratio 1.34; 95% confidence interval 1.23-1.47). This indicates a variation in symptom experience based on diagnosis, with a higher percent of palliative care patients by diagnosis of non-malignant diseases struggling with breathlessness.
Interestingly, the setting of death also played a role. Deaths in community settings were more likely to be complicated by more severe symptoms, with the exception of breathlessness. In contrast, patients dying in acute hospitals were most likely to be assessed as needing further help for breathlessness. This suggests that while overall symptom control might be perceived as adequate in many palliative care settings, certain symptoms like breathlessness and the place of care significantly influence patient experience.
Discussion: Contrary to the common perception of the terminal phase being overwhelmingly characterized by distressing symptoms, this study suggests a different perspective. Many patients, especially those with non-malignant conditions, experience acceptable symptom control. However, the study does highlight a potential detrimental effect of the place of care, with more significant problems reported for those dying at home. Further research is crucial to understand and address these challenges, particularly given the increasing emphasis on home deaths in palliative care. Understanding the percent of palliative care patients by diagnosis who experience specific symptoms in various settings is vital for improving end-of-life care strategies and resource allocation.
