The road not taken: Forgoing disease-directed treatments in advanced cancer. A rejoinder to ‘Concepts of health, ethics, and communication in shared decision making’ by Lauris Kaldjian

Abstract

Between 1961 and 1979 physicians changed their practice from most often not telling patients their diagnoses of cancer to routinely disclosing it (Oken 1961; Novack et al. 1979). The change can be explained, in large part, by advances in cancer treatment, growing appreciation of the duty to obtain informed consent, changes in professional values, and the rise of the patients’ rights movement. It soon became apparent, however, that patients with advanced cancer were often unaware of their prognoses because prognostic disclosure was far more challenging to physicians than diagnostic disclosure. In 1995, investigators of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) reported that an intervention to inform physicians of prognostic estimates and a nurse to elicit patient preferences and encourage patient–physician communication did not improve the frequency of code status discussions, physician awareness of patient resuscitation preferences, or number of days in the intensive care unit (ICU) (Connors 1995). In reflecting on the progress between the publication of the SUPPORT study and the 2015 Institute of Medicine report Improving Quality and Honoring Individual Preferences near the End of Life, we wondered whether the persistent concerns about the quality of end-of-life (EOL) care and patient awareness of prognosis are due to flaws in clinician appreciation of the ethical principles of informed/shared decision making or clinician communication skills.