Measuring quality of life in palliative care

In the palliative treatment of chronic illness, attention must extend beyond symptom control to include the overall quality of patients' lives. Symptom relief is highly valued by patients and usually is associated with improvement in general functioning and well-being (ie, overall quality of life). Side effects and costs of therapy, however, also must be included in the equation to fully balance the treatment decision. Patients tend not to think dichotomously in terms of toxicity versus efficacy; rather, they consider the aggregate of their capabilities, circumstances, and somatic sensations. In fact, they often confuse symptoms with side effects. We must therefore survey patients in terms of their disaggregated experience, using a valid self-report questionnaire, and help them make decisions about treatment by estimating which deficiencies or improvements are attributable to disease versus treatment. The dialogue that this demands is challenging, because it can threaten the adaptive suppression that many patients use to protect themselves from negative feelings. Unfortunately, the consequence of avoiding this dialogue often is unnecessary treatment given with misunderstood intentions.