The global distress experience is derived from physical, psychological, social and
To explore the evolution of distress amongst patients with advanced cancer at the end
of life, from the time of referral to palliative care services to death. The primary
outcome measure was global distress. Secondary measures were physical,
psychological, social and spiritual distress
A mixed methods longitudinal study: One hundred advanced cancer patients, newly
referred to the community services of a central Scotland hospice, were recruited
consecutively. A 20 patient sub-sample was purposively selected for qualitative
study. Assessments were monthly for 6 months maximum, each comprising the
NCCN Distress Thermometer (DT), Memorial Symptom Assessment Scale (MSAS),
Edinburgh Depression Scale (EDS), FACIT-Sp-12 (FACIT); qualitative data were
derived from in-depth interviews. Statistical analysis was largely descriptive;
grounded theory was used in the qualitative analysis.
Perception of receiving inadequate information and social dysfunction were
independent predictors of global distress according to multivariate analysis.
Increased opioid doses, out-of-hours home visits and unscheduled admissions were
significantly associated with global distress. Over time, physical, psychological and
spiritual distress levels initially fluctuated, prior to stabilising at a lower level, with
occasional exacerbations of distress. Global Distress (DT) fluctuated constantly, yet
correlated significantly (p<0.001) with MSAS, EDS and FACIT. Patients'
perspectives evolved with time, indicating reconciliation with death, despite
unpredictable exacerbations of distress, reflecting transient loss of control.
Independent predictors of distress at the end of life have been identified. Global
distress was associated with an increased healthcare burden through greater service
input requirements. Patient perspectives qualified the quantitative data, together
indicating that from the time of referral to palliative care services, patients with
advanced cancer, receiving community palliative care input, appear to become
reconciled to death. However, at the end of life, transient loss of control mediated
episodic, unpredictable exacerbations of distress, which were detected by the NCCN