Our Delusions Regarding The End Of Life

The human capacity to deny reality is one of our defining characteristics.

Without denial, the American settlers might have aborted their westward trek somewhere around Pittsburgh; Steve Jobs might have thrown up his hands after the demise of the Lisa; and Martin Luther King’s famous speech might have been entitled, “I Have a Strategic Plan and a Draft Budget.”

Yet when danger or failure is just around the corner, denial can be dysfunctional (see Karl Rove on Fox News), even suicidal (see climate change).

Healthcare is no exception. Emerging evidence suggests that patients and their surrogates frequently engage in massive denial when it comes to prognosis near the end of life. While understandable – denial is often the way that people remove the “less” from “hopeless” – it can lead to terrible decisions, with bad consequences for both the individual patient and society.

First, there is evidence that individuals charged with making decisions for their loved ones (“surrogate decision-makers”) simply don’t believe that physicians can prognosticate accurately. In a 2009 study, UC San Francisco's Lucas Zier found that nearly two-thirds of surrogates gave little credence to their physicians’ predictions of futility. One-in-three would elect continued life-sustaining treatments even after the doctor offered their loved one a less than 1% chance of survival.

In a more recent study by Zier and colleagues, 80 surrogates of critically ill patients were given hypothetical prognostic statements regarding their loved ones. The statements ranged from “he will definitely survive” to “he will definitely not survive.”

When the prognosis was optimistic (“definitely survive” or “90%” survival odds), surrogates’ estimates were in sync with those of the physicians. But when the prognosis was pessimistic (“definitely not survive” or “he has a 5% chance of surviving”), surrogates’ interpretations took a sharp turn toward optimism. For example, surrogates believed that when the doctor offered a 5% survival chance, the patient’s true chance of living was at least three times that; some thought it was as high as 40%.

Remarkably, when asked later to explain this discordance, many surrogates struggled. Said one, “I’m not coming up with good words to explain this [trend] because I was not aware I was doing this.”

Religious beliefs also play a part. In Zier’s 2009 study, nearly half the surrogates harbored religious objections to the notion of futility. These individuals were far more likely than those with other objections to favor continued aggressive care in the face of a physician’s dire prognosis. Even more striking, in a 2008 study of more than 1,000 adults by Jacobs and colleagues, 61% believed that a person in a persistent vegetative state could be saved by “a miracle,” and 57% believed that divine intervention could rescue a patient even after a physician had characterized the situation as hopeless.

There is also something subtler going on here: a type of collusion between doctors and their patients, neither of whom really wants to confront some painful truths. You may recall Atul Gawande’s poignant New Yorker piece on end-of-life care from 2010. Gawande described a post-op visit with one of his patients, after he found her abdomen filled with widely metastatic colon cancer at surgery, a situation that offers no hope of cure.

While there are some valid reasons for undue optimism and misunderstanding, the impact can still be highly destructive. Patients and surrogates need accurate prognostic information in order to make informed choices about their treatment options, whether it is chemotherapy, intensive care, surgery, dialysis, or palliative care and hospice. As Zier writes, “not all optimism is ethically benign.”

Can we have a calm, rational discussion about all of this, built on a foundation of science? In today’s America, I’m sad to say that that would be a miracle. But a person can always hope.

Robert Wachter, M.D., is an author and professor of medicine at UCSF, and chair of the American Board of Internal Medicine. He also hosts a blog site, Wachter’s World.