Viewpoint: Patients have the right not to know their prognosis

It is important that terminal patients be able to choose whether they are informed of their prognosis, BJ Miller, MD, a hospice and palliative care specialist at the University of California San Francisco, and Shoshana Berger, an editorial director at Ideo, wrote in an op-ed for The New York Times.

 Patients facing serious illness feel empowered when they make decisions about the flow of information, Dr. Miller and Ms. Berger write. Furthermore, prognoses are often inaccurate. They are based on the average life spans of previous patients with the same disease, and physicians tend to overestimate life expectancy, particularly for patients they like. 

Choosing not to know information can be countercultural in an age obsessed with data, Dr. Miller and Ms. Berger write, but the choice can be liberating. The authors cite Steve Scheier, founder and CEO of Decision Clarity Group, who designed a form called the "Prognosis Declaration" after his wife died of cancer in 2010. The form gives patients various options to help them decide how much they want to know about their illness, ranging from "Tell me everything" to "I don't want to receive any information on my prognosis."

While the form may not become standard practice, Dr. Miller and Ms. Berger write it is an effective way to help patients think through the kind of care they want to receive. Such decisions should lie in patients' hands, not physicians'.

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