Comparing Severe Symptom Distress of Inpatients and People Cared for in the Community in Their Last Week of Life: A National,Consecutive Cohort Study

Abstract

Background:

Understanding how symptom outcomes vary by care setting helps optimize care.

Aim:

To compare trajectories of severe symptom distress in the final week of life across community and hospital settings.

Design:

This retrospective consecutive cohort study used point-of-care data from the Australian Palliative Care Outcomes Collaboration, which includes the Symptom Assessment Scale and Palliative Care Problem Severity Score. Mixed-effects logistic regression models were adjusted for clinical, demographic and temporal factors.

Setting/Participants:

Australian palliative care services (n = 165) contributed data for people who died between July 1, 2019, and June 30, 2024.

Results:

Of 141,691 patients,73.6% were inpatients; 61.0% had a cancer diagnosis. Severe symptom prevalence was generally low (<5%). After adjusting important factors, inpatients had higher relative odds of severe pain-related (aOR: 1.20, 95% CI: 1.10, 1.30) and breathing-related distress (aOR: 1.55, 95% CI: 1.40, 1.70) compared with community patients; the corresponding absolute risk differences (ARDs) were minimal (pain: +0.36 percentage points; breathing: +0.79 percentage points). Conversely, inpatients had lower relative odds of severe fatigue (aOR: 0.86, 95% CI: 0.79, 0.94) and insomnia (aOR: 0.74, 95% CI: 0.66, 0.84), with small ARDs (fatigue: −0.32; insomnia: −0.26). Over time, severe breathing-related distress increased significantly as death approached, while pain-related distress increased slightly. Inpatients were also less likely to experience family/carer issues (aOR: 0.78, 95% CI: 0.72–0.84), or other symptoms (aOR: 0.57, 95% CI: 0.53–0.61), with small ARDs (family/carer: −0.56; other symptoms: −0.26).

Conclusions:

While some relative differences were noted between settings, absolute differences were minimal, suggesting clinically comparable outcomes. These national data show that severity of symptoms in the two care settings are similar, reassuring patients, families, and health care professionals.