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Summary 

Each year around 80.000 patients are treated in a Dutch Intensive Care Unit (ICU). Although most patients survive, the aftermath can be severe and mortality during and after the ICU remains significant. Therefore, the benefit and harm of an ICU treatment should be assessed repeatedly. Longterm outcome, current suffering and patient preferences should be aligned in order to provide proportional care that has the potential to realize patient-specific goals concerning longterm outcome. This thesis focusses on longterm outcome on the one side and decision-making on continuing or limiting ICU treatment on the other side. 

We found that of the 8% of the Dutch patients who are treated in the ICU for more than one week, 40% dies within the first year. The risk of dying is, after a few days, best predicted by pre-morbid patient characteristics. In addition, many ICU survivors suffer from newly acquired impairments in physical, cognitive and/or mental health. Although they report a decreased quality of life, most survivors rate their outcome as acceptable. 

Based on previously gathered evidence, former ICU patients, surrogate decision-makers, ICU nurses and physicians, developed a framework that defines four elements in the decision-making process. Three elements describe the timing and content of family-conversations, the fourth is a weekly time-out meeting. In this multidisciplinary meeting prognostic factors, current suffering and patient preferences are systematically addressed. The first evaluation showed that after the implementation, decisions to limit ICU treatment were postponed.