The disparity between patient and proxy information satisfaction reflects the complexity of participatory strategies to limit morbidity at the end of life. Proxy over- estimation of patient dissatisfaction with information received may reflect the caregivers own dissatisfaction. As death approaches, caregivers require more information than patients, their burden increases and they become the interpreter of patient symptoms. Ignorance may lead to overestimation of symptoms, early breakdown of social care, and unplanned admission, risking death other than in the patients preferred place. Meeting caregiver information needs may reduce caregiver burden and improve proxy assessments, reducing patient and caregiver morbidity.
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