The Center for Bioethics and Social Sciences in Medicine (CBSSM) at University of Michigan held its 5th annual Research Colloquium on April 27, 2016. Assistant Professor Dr. Devan Stahl attended and presented on the patients’ right not to know their prognosis, and topic that generated much conversation among the participants both during and after the presentation.
The colloquium brought together scholars working in a variety of areas of bioethics. Presentations included topics such as clinical ethics consultation, medical insurance, VIP patients, breastfeeding, gene sequencing and community engagement in research. Overall, it was a very engaged group who had much to offer one another on a variety of interesting topics.
Abstract: There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.
The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.