Symptom burden in palliative care patients: perspectives of patients, their family caregivers, and their attending physicians

The purpose of this study was to prospectively evaluate the perspectives of palliative care patients, their family caregivers, and their attending palliative care specialists on frequency, intensity, distress, and treatment requirement of the patient's physical and psychological symptoms. Forty advanced cancer patients and their family caregivers were recruited through a palliative care inpatient ward within 24 h after admission. Patients, caregivers, and physicians completed a modified version of the Memorial Symptom Assessment Scale (including perceived treatment requirement). Thirty-nine patients (98 %) suffered from at least one symptom frequently or almost constantly (median number 5; range, 0-9). Most frequent symptoms were lack of energy (95 %), tiredness (88 %), and pain (80 %), which were scored correspondingly by patients, caregivers, and physicians to be the most intensive, distressing, and treatment requiring. Treatment requirement was determined by symptom intensity or distress in patients and physicians, but by distress in caregivers. Significant differences in symptom burden between patients, caregivers, and physicians were found with regard to pain (p = .007), tiredness (p = .037), lack of energy (p < .05), anxiety (p < .05), and sadness (p < .05). Physicians underestimated 60 % of symptom dimensions, while the caregivers overestimated 77 %; however, overall median scoring differences were limited with -.10 (range, -.55 to +.25) between patients and physicians and +.33 (range, -.78 to +.61) between patients and family caregivers. While physicians tended to underestimate, family caregivers tended to overestimate the patient's symptoms. Therefore, adequate symptom treatment can only be successful in a close dialog between patients, their caregivers, and a multidisciplinary team.