Symptom distress as rated by advanced cancer patients, caregivers and physicians in the last week of life

Objectives: To study the symptom distress as rated by patients with advanced cancer during their last week of life, and to compare patients' ratings with those perceived by caregivers and physicians. Method: This was a prospective study on all patients admitted to the Hospice Unit of the Caritas Medical Centre with an estimated life expectancy of two weeks or less from May 2002 to September 2002. A questionnaire with a list of 13 symptoms, including pain, dyspnoea, nausea, vomiting, dry mouth, cough, fatigue, cachexia, anorexia, constipation, diarrhoea, insomnia and haemoptysis, was administered to assess the distress. Distress was rated by a verbal rating scale consisting of five grades (grade 0 to grade 4). Patients, caregivers and physicians completed the questionnaire weekly until the patient died. Only the questionnaires completed in the last week of life were included for analysis. Results: Of 82 patients who were recruited in the study, 30 patients were able to complete the questionnaire within the last week of life. Their median age was 69 years and the gender ratio was 1:1. Lung cancer was the most common primary tumour. Fatigue, cachexia and anorexia caused distress of all grades in nearly all 30 patients and caused significant distress of grade 3 and above in two-thirds of patients. Neither the caregivers nor the physicians gave congruent distress scores for these three Symptoms (kappa<0.4). Caregivers' ratings agreed well with those of patients for five Symptoms (kappa>0.4, P<0.005), including dyspnoea, cough, dry mouth, constipation and insomnia. For physicians, good agreement was found for three symptoms only, including pain, dyspnoea and cough. Moreover, physicians tended to underrate the distress. Conclusion: Fatigue, cachexia and anorexia were the three most distressful symptoms in the last week of life in this group of patients, but caregivers and physicians failed to rate them in agreement with patients.