One hundred and six consecutive patients started on glucocorticosteroids (steroids) according to a defined prescription policy were surveyed each week to document the indications for use, any beneficial effect, any toxicity incurred and the reason for stopping. All patients had advanced malignant disease and survived for a median of 40.5 days (range 1-398+ days) from the start of steroid treatment. Fifty-seven per cent of patients completed three or more assessments. The most common specific indications for starting steroids were spinal cord compression, cerebral metastases, lymphangitis carcinomatosa and intestinal obstruction. The most common non-specific indications were anorexia, nausea, low mood, pain and vomiting. The median duration of steroid use was 21.5 days (range 1-89 days). The most common reason for the discontinuation of steroids was death or deteriorating condition. Symptom scores improved at some stage for the majority of patients started on steroids for anorexia, nausea, pain, low mood, vomiting and weakness but not in patients complaining of dyspnoea or poor mobility. The most common side-effects that were most probably attributable to steroid therapy were oral candidosis and proximal myopathy. The benefits of steroids when used according to defined guidelines were thought to outweigh toxicity.
The Edmonton Symptom Assessment scale (ESAS) was used on 1004 occasions to assess 71 patients with advanced malignant disease admitted to a palliative care unit in the UK over a six-week period. The median length of inpatient stay was eight days (range 1-36) and the median survival from start of ESAS to death was 16 days (range 2-202). Across all patients there was a trend towards worsening symptom scores over the first five days from admission with a significant deterioration in appetite scores. When scores were analysed retrospectively over five days according to outcome (death--group 1, or discharge--group 2) there was a significant improvement in pain scores in group 2 but no change in overall score, and a significant deterioration in activity, drowsiness and appetite in group 1 with no change in overall score. ESAS did not seem an appropriate tool in this group of patients as the total symptom scores were so often biased by the inevitable increase in individual symptom scores immediately prior to death.
Objectives To develop a process of advance consent to enable research to be undertaken in patients in the terminal phase. Design Feasibility study of an advance consent process to support a randomised controlled trial of two antimuscarinic drugs (hyoscine hydrobromide and glycopyrronium bromide) in the management of noisy respirations associated with retained secretions ("death rattle"). Setting Palliative care wards in a major cancer centre. Participants Patients admitted to a palliative care ward who may develop "death rattle" and thus be eligible for randomisation. Main outcome measures Patient accrual; acceptability of the consent process. Results Of the 107 patients approached, 58 patients gave advance consent to participate in the study. Of these, 15 patients developed death rattle and were randomised to receive either hyoscine or glycopyrronium; 16 patients died elsewhere; 15 patients died on the palliative care wards but were not randomised; 12 patients are still alive. Conclusions Initial assessment suggests that this is a workable consent process allowing research to be undertaken in patients who are unable to give consent at the time of randomisation. Patient accrual rates to date are lower than needed to recruit adequate numbers in the time allotted to answer the research question.
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