Quality of life and ethics: Opinions about chemotherapy among patients with advanced melanoma, next of kin and care‐providers

Abstract

AbstractThe treatment of generalized malignant melanoma is purely experimental and palliative. Despite rather pessimistic results from numerous clinical trials with aggressive combination chemotherapy clinical trials are still considered among the main options for making progress. During a period of three years, a longitudinal quality of life (QoL) study was performed in connection with one such clinical trial, part of the Swedish Melanoma Programme. Parallel to the QoL measures, questions concerning the value of treatment and communication about treatment toxicity were consecutively put to patients with advanced disease, their next‐of‐kin and nurses. During this period we followed professionals dealing with everyday medical, psychological and ethical aspects of aggressive chemotherapy in the context of palliation. In connection with the official closure of the QoL assessments, a questionnaire study addressing opinions on chemotherapy and ethical conflicts related to the current treatment was performed. All professional categories working at the Melanoma Unit of The Karolinska Hospital participated in this study. By combining these two sources of information, we have tried to give a broad picture of attitudes towards chemotherapy for palliation of metastatic melanoma. After 2–3 months of therapy half of the patients reported the treatment troublesome, 50% felt it had been helpful and very few had thought about stopping the treatment. The patients communicated mainly with their family about treatment toxicity, leaving the nurses with insufficient information to assess effects on an individual level. The relatives therefore seem to be more appropriate proxy raters than the nurses in the present palliative situation, at least concerning the value of treatment. The questionnaire study revealed fewer differences between staff members than expected. The staff had an overwhelmingly positive attitude to chemotherapy and found satisfaction in their work. They sought motivation in this meaningful work and the feeling of being really needed by patients. The environment, a university clinic with an active treatment tradition, undoubtedly modifies the personnel's attitudes and coping strategies. It seems reasonable to assume that the professional's view increases the patient's enthusiasm for chemotherapy.