Abstract

Stroke is a major cause of death and lifelong disability. Although stroke treatments have improved, many patients are left with life-changing deficits. Shared decision making and consent are fundamental to good medical practice. This is challenging because stroke often causes mental incapacity, prior views might not be known and prognosis early after stroke is often uncertain. There are no large trials of shared decision making after severe stroke, so we need to rely on observational data to inform practice. Core ethical principles of autonomy, beneficence, non-maleficence and justice must underpin our decision making. 'Surrogate' decision makers will need to be involved if a patient lacks capacity, and prior expressed views and values and beliefs need to be taken into account in decision making. Patients and surrogates often feel shocked at the sudden nature of stroke, and experience grief including anticipatory grief. Health care professionals need to acknowledge these feelings and provide support, be clear about what decisions need to be made and provide sufficient information about the stroke, and the risks and benefits of treatments being considered. Shared decision making can be emotionally difficult for health care professionals and so working in a supportive environment with compassionate leadership is important. Further research is needed to better understand the nature of grief and what sort of psychological support would be most helpful. Large randomised trials of shared decision making are also needed.

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