Prognosis, proportionality and preferences

Abstract

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. Longterm outcome 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. One third to half of ICU survivors suffer from the sequelae of ICU treatment, marked by an increased hospital resource use, decreased quality of life and newly acquired physical, cognitive or mental disabilities that persist after discharge. These survivors report a decreased quality of life, mostly explained by symptoms of anxiety and depression. However, most survivors rate their outcome as acceptable which illustrates that patients could have the ability to adjust and give meaning to impairments. Decision-making In the majority of patients who die in an ICU, a decision to withhold or withdraw life-sustaining therapy precedes death. However, a high variability in the tendency to limit life sustaining therapy has been described between countries, within countries and even between physicians within the same ICU. In order to standardize decision-making, we first reviewed the literature which showed that the decision-making process could benefit from more frequent and enhanced communication with patients and surrogates using a standardized format comprising the structure and topics of the meeting. Subsequently, 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 revealed postponed decision-making after the implementation, illustrated by an increased ICU length of stay for patients who died within 90 days. The use of the framework was not associated with an increased ICU or hospital mortality. Conclusion Deciding on life-sustaining ICU treatments requires the integration of suffering, prognosis and preferences in order to provide proportional and goal-concordant ICU care. During the ICU admission, the estimate of prognosis mostly requires knowledge on pre-morbid health. The use of a decision-making framework promotes a standardized process and an individualized assessment of prognosis, proportionality and preferences for every ICU patient. Its use can encourage goal-concordant ICU care and has the potential to prevent unwanted or non-beneficial care.