Better dead than alive? Quality of life after stroke

Abstract

Stroke can be a life-threatening disease, but it is more often a disease resulting in chronic disability. In fact, it is the most likely cause of chronic disability in the elderly [1]. Stroke can affect many aspects of our behavior and personality. It can impair our ability to move, see, speak, memorize, or think and can thus affect whether and how we can enjoy living. The focus of stroke research and stroke rehabilitation has long been to increase survival and reduce disability-disability understood as the degree to which the affected patient depends on external help for accomplishing tasks of daily living. This is still a valid perspective, but it is not the only one. From a patient's perspective disability matters but sometimes not as much as other consequences of a stroke. Pain is a case in point. Patients with upper limb plegia frequently develop contractures. These contractures in turn can lead to pain. Regular physiotherapy can often prevent those contractures and reduce the concomitant pain. This will not reduce the required help or reduce the disability but can significantly affect a patient's quality of life. There are other examples that illustrate that disability and life quality can dissociate. Patients with hemiplegia will often require more help than patients with isolated aphasia and are thus more disabled. But from the patient's perspective the inability to communicate their thoughts, worries, and wishes can be much more soul-destroying than the inability to move. It seems obvious that for a system, which aims to improve and maintain the well-being of all patients in its care, the perspective of those patients should have the highest priority and at the very least should be taken into consideration. Current trends suggest that in the future those perspectives will not only have to be taken into consideration, but might become a major force in shaping our health system. Government organizations with the task to decide which treatments will receive funding are already taking the quality of the life saved or extended into the equation [2].