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Hope for the best, prepare for the worst:

Naomi C. A. van der Velden

Worldwide, the majority of patients with advanced cancer want prognostic information. Information about prognosis may help patients make well-considered treatment decisions and prepare for impending death on a practical, emotional, psychological, existential and social level. Still, patients commonly misunderstand their prognosis. As a result, patients may be ill-prepared for the end of life and make decisions in disaccord with their values, such as aggressive medical care near death with limited benefits and considerable risks. The overall aims of this dissertation were: (1) to better understand patients’ prognostic information preferences and prognostic perceptions, whilst considering the physician-patient-caregiver triad, and (2) to contribute to evidence-based, clinically relevant guidance for physicians to optimize prognostic communication in the advanced cancer setting. Findings showed that one-third of patients in the Netherlands do not want to receive prognostic information, and that patients often have more optimistic prognostic perceptions than their physician and caregiver. Furthermore, findings suggested that physicians’ prognostic communication strategy impacts how individuals perceive prognosis, if they want chemotherapy, how they feel about this treatment decision, and how they appreciate provided prognostic information. This dissertations encourages physicians to assess patients’ prognostic information preferences and prognostic perceptions regularly, for example during ongoing goals-of-care conversations. Future research should unravel how patients’ prognostic information preferences and prognostic perceptions develop over time, and gain more insight into the causal effects of prognostic communication strategies. Such efforts may further assist physicians in navigating discussions about prognosis, ultimately optimizing the delivery of care and enabling patients to spend the last phase of life in accord with their wishes.

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