The human capacity to deny reality is one of our defining characteristics. Evolutionarily, it has often served us well, inspiring us to press onward against long odds. Without denial, the American settlers might have aborted their westward trek somewhere around Pittsburgh; Steve Jobs might 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 and Superstorm Sandy).

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, UCSF’s Lucas Zier found that nearly two-thirds of surrogates gave little credence to their physicians’ predictions of futility. Driven by this skepticism, 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,” with 14 statements in between (including some that offered percentages, such as “he has a [10%, or a 50%, or a 90%] chance of survival”). After hearing these statements, surrogates were asked to interpret them and offer their own survival estimates.

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.” The authors identified two main themes to explain their findings: surrogates’ need to be optimistic in the face of serious illness (either as a coping mechanism for themselves or to buck up their loved one), and surrogates’ beliefs that their loved one possessed attributes unknown to the physician, attributes that would result in better-than-predicted survival (the “he’s a fighter” argument).

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 1000 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.

A study in last month’s New England Journal of Medicine by Weeks and colleagues further illustrates the gulf between reality and perception when it comes to terminal care. The authors surveyed 1193 patients with metastatic lung or colorectal cancer who were receiving palliative chemotherapy. Approximately half of the lung cancer patients and two-thirds of the colorectal cancer patients believed that a cure was “very” or “somewhat” likely. (Sadly, the chance of a cure is essentially nil in such patients.) Unrealistic expectations were particularly common in nonwhite patients. Interestingly, patients who reported better physician communication were also more likely to have inaccurate expectations – perhaps because the doctors were telling the patients what they wanted to hear.

This literature illustrates that patients’ and surrogates’ religious beliefs color their perceptions, as do doubts regarding whether their physicians are accurate prognosticators. The latter concern is not entirely without merit. All experienced physicians can recall circumstances in which things did turn out better than advertised. I recently renewed my acquaintance with a former colleague who had a huge MI – which resulted in heart failure and a scary-low ejection fraction – while in his 40s. His physicians told him to retire from practice and enjoy his last few years on earth. He quit his UCSF faculty position and moved to Montana. That was 20 years ago; he’s doing just fine today. My dad had stomach cancer in his early 50s, with a positive lymph node found at the time of his gastrectomy. He was told to get his affairs in order, which he promptly did. He needn’t have rushed: he’s alive and reasonably well today, 30 years later. In both cases, the doctors weren’t wrong, per se; the odds were fairly terrible. But both men managed to beat them. These are the cases that we all remember – both patients and doctors need only to see a few like them to soften everyone’s sense of prognostic certitude.

But there is something subtler going on here: a type of collusion between doctors and their patients, neither of whom really wants to confront some painful truths. Weeks and colleagues cite a 2000 ethnographic study, in which the investigators observed both oncologists and patients rapidly pivoting from discussions of prognosis to matters of treatment options and logistics. “In other words,” Weeks wrote, “a focus on chemotherapy was the instrument that facilitated prognostic misunderstanding.”

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.

I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. ‘We’ll bring in an oncologist,’ I hastened to add. ‘Chemotherapy can be very effective in these situations.’

She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. ‘Am I going to die?’

I flinched. ‘No, no,’ I said. ‘Of course not.’

Every physician I know, including me, can recall getting weak-kneed at moments like these. It is only natural.

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.”

Moreover, in an era in which the costs of healthcare have become a central concern for all Americans – one-in-four Medicare dollars are spent in the last year of life – we can no longer afford to swim in a sea of wildly inaccurate prognoses. Patients and family members who believe that chemotherapy for metastatic cancer can be curative will not only favor it when they shouldn’t, but they and their advocates will demand that it be covered by insurers, even if its meager benefits are not worth the costs and toxicity. And, while patients have every right to their own religious beliefs, should those whose beliefs are grounded in science be forced to contribute to the costs for patients who insist on aggressive care because they believe in miracles?

Fixing this is going to take a multifaceted approach. Both physicians and patients need access to better tools to help them prognosticate accurately. A wonderful example of such a tool is ePrognosis, developed by our VA-based geriatrics group. Clinicians also need better training in communicating prognosis with patients and surrogates, particularly in how to offer accurate information without robbing patients and families of (realistic) hopes.

As everybody who either read or watched Moneyball knows, baseball scouts who used to base their recruiting decisions on gestalt now rely on advanced statistics to make data-based prognostications. Similarly, decisions by patients and surrogates about treatments near the end of life should be based on empirical data and science, not on hope, theology, or magical thinking. And, in a healthcare world in which costs must be cut, policies – including insurance coverage for specific treatments – should be based on accurate information about prognoses and outcomes.

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, MD, professor of medicine at UCSF, is widely regarded as a leading figure in the patient safety and quality movements. He edits the federal government’s two leading safety websites, and the second edition of his book, “Understanding Patient Safety,” was recently published by McGraw-Hill. In addition, he coined the term “hospitalist” in an influential 1996 essay in The New England Journal of Medicine and is chair of the American Board of Internal Medicine.  His posts appear semi-regularly on THCB and on his own blog, Wachter’s World.

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10 Responses for “Denying Reality About Bad Prognoses”

  1. Jeff Goldsmith says:

    The latest in a remarkable string of excellent posts! This is actually the companion piece to the Kristen McConnell piece below, explaining why patients’ families are often complicit in the end-of-life torture sessions she describes. It’s the grieving process before the patient is dead.

    And we’re funding it with out tax dollars. If we’re uncomfortable, as we should be, with “death panels” and it’s unrealistic to fight the surrogates “hopium” addiction, what about letting patients families bear a meaningful fraction of the cost of the last five ICU days, counting backward from the day of death, based on their ability to pay? Can you imagine the Senate debate on the changes to Medicare required to make this happen?

    We’re not going to get the “calm rational discussion built on a foundation of science” that our friend Dr. W proposes. After Sarah Palin’s “cheap shot heard round the world”, it will be a decade before we hear politicians talking about this issue on the record.

  2. Interesting article. Sadly, there will never be an intelligent discussion based on science regarding healthcare reform (or most matters) because most Americans base their decisions on feelings rather than fact.

  3. We should not have a calm, rational discussion about all of this. We should not have national policies regarding death any more than we should have them for birth (or lack thereof).
    These things should be up to the individual, his family (if one exists), his doctor and yes his God (if he has one).

    I don’t thing religion and lack of scientific thinking amongst whites or “non whites” is the culprit here. People were much more likely to die in peace in the past, when religion was stronger and science was weaker.

    I wonder what role does the hospital’s incessant thirst to make money plays in this little drama, because it seems to me that the more powerful, greedy, impersonal and business-like hospitals became, the higher the costs of “care”, or whatever they’re selling there nowadays, has become.

    • Jeff Goldsmith says:

      Margalit,

      I’ve worked with hospitals for over thirty years. This end of life stuff isn’t about money. Most of the patients are Medicare patients, and hospitals lose, on average, about eight cents on every dollar they spend treating them. My sense is that ICU’s actually lose money for most hospitals. There is a problem about physicians loading on consults for hopeless patients, and, as suggested above, the fear of being sued for withdrawing care. Either way, it’s bad business, because patients families lose their loved ones anyway, and often walk away blaming either the clinical team, the hospital or both.

      The default hospital setting is to do more, much more sometimes, even if the patient isn’t capable of returning to a healthy place, because that’s what families want. The absence of candor with families, or the unwillingness of families to let go of loved ones, leads to a lot of needless suffering and, I’m sorry to bring this up again, waste. The two posts here are really important, both for humane reasons and for economic reasons as well. I’m personally a lot more concerned about the needless suffering at the end of life, and the loss of control over one’s autonomy, than about the money.

      There is a lot of futile care, and while it isn’t the huge amount of money people think, the opportunity cost is that we don’t have money for care that actually improves peoples’ lives. “Last year of life” care is 28% of Medicare spending, which is about 23% of total US health spending- maybe 6.4% of the $2.7 trillion we spend every year. If we did less of it, somehow, we’d have more money to spend on prevention, on primary care services, on care for children, you name it. . . You tell me how we give people dignity at the end of life, and a lot of the financial issues will sort themselves out.

  4. Lynn in SC says:

    All to often patients and their families believe the only way to get good medical care with a terminal diagnosis is to pursue cure–surgery, chemotherapy and/or radiation therapy. I’ve encouraged patients to seek 2nd opinion consultations with palliative care physicians to learn about “care” options along with cure. But accessing palliative care can be a clinical, insurance, or financial barrier. Patients are perceived as giving up when actually they may be making a judgment of quality over quantity. It’s about patient choice but patients can’t make an informed choice without accessible and understandable information.

    Health care is a complicated human interaction and we all need the best information to make our best judgments, especially when there are NO good choices.

  5. Peter1 says:

    Are docs taught how to deal with these issues (rational and compassionate discussion with family) in med school? Or do they just wing it?

  6. Dr. Mike says:

    Lets say that a study showed that telling every patient terminally ill with a certain disease that they should not give up hope resulted in 3 months extra life, on average, independent of any other treatment offered and/or utilized.
    Now lets say that offering these same terminally ill patients (and having them utilize) aggressive palliative care also resulted in 3 months extra months extra life on average.
    What is the difference between the two? MONEY.
    It is patently ridiculous to expect patients who have (or perceive that they have) paid their insurance premiums in order to receive any covered service to voluntarily give up the benefit of those services simply to save money for the insurer. That is why the panels convened to determine appropriateness of end of life care get called death panels – the panel and those who support them want the patient to accept limiting their benefits based on the prognosis given by a fallible individual.
    Discussions surrounding end of life care need to focus on the benefit and risk of each choice. The prognosis for life quality is what is missing in favor of a focus on life quantity. Figure out how to educate the populace on that concept and the panels become less of an issue. Hopefully mislabeling them as “death panels” has given us as a society enough time to have a more reasonable discussion on the issue without pressing prematurely forward on an administrative solution.

  7. pcb says:

    Just read the Shel Silverstein poem “The Clock Man” to my kids last night. Seemed appropriate to this discussion, and highlights why this topic is as difficult as it is:

    http://www.tumblr.com/tagged/the-clock-man

  8. Dhruv says:

    God has created human beings. It’s we who have created different religion. So, we should always believe in god because god is one.. Instead of lighting candles in church or temples, we should lit them in homes of poor people. Because, love to mankind is the love to god..

  9. James says:

    Great column except for the attempt to toss in the canard on climate change and Hurricane Sandy. We had a freak storm where everything that could go wrong did in a perfect Swiss cheese effect of bad. From hitting at maximum high tide to running into a cold front (are cold fronts also global warming?) to a split jetstream, it was the “perfect storm” of lamentable events.

    The East Coast had monster storms in the last century. The resort island of Hog Island was wiped off the map in one in 1893.

    http://en.wikipedia.org/wiki/Hog_Island_%28New_York%29

    Note this storm was more powerful (Category 2) and produced storm surges as high as 30 feet:

    http://en.wikipedia.org/wiki/1893_New_York_hurricane

    Five tropical cyclones are known to have hit New York City, but somehow this last one is proof of man-made global warming. So, if a category 1 storm in 2012 is conclusive, then what shall we make of a Category 3-4 storm in 1821? Or, what of the even more powerful storm that struck the same region before Columbus landed on our fair shores?

    http://en.wikipedia.org/wiki/1821_Norfolk_and_Long_Island_hurricane

    Again, loved the rest of the column.

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