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Hope, Statistics and the Overtreatment of Cancer

flying cadeuciiWhen diagnosed with abdominal mesothelioma, a rare cancer with a blighted future, evolutionary biologist and writer, Stephen Jay Gould, turned his attention to the statistics; specifically, the central tendency of survival with the tumor. The central tendency – mean (average), median and mode – project like skyscrapers in a populated city and are the summary statements of a statistical distribution.

The “average” is both meaningful and meaningless. The average utility of average is zero. Consider a gamble – fair coin toss where you get $50 if it lands heads and lose $50 if it lands tails. The average (net) gains of this coin toss, if the coin is thrown hundreds of time, is zero.  But no one gets nothing – you either get $50 or lose $50. The average is twice wrong – it over estimates for some and under estimates for others. But the average of this gamble has important information. It helps you decide if you could profit from making people play this gamble – you wouldn’t profit unless you charged a small fee to play the gamble.

The median is the mid-point of a distribution. Gould’s cancer had a median survival of eight months. This meant that half (unlucky half) lived fewer than eight months and half (lucky half) lived more than eight months with the cancer. The mean is affected by outliers but the median is not. For example, consider Mumbai’s billionaires. They raise the average income of the city, not the median income. Skewness of a distribution affects the mean, not the median. Put another way, the median (Mumbai’s slums) conceals the skewness (Bollywood).

Gould, describing in his classic essay “The median is not the message,” ignored the median survival but looked at the skewness of the distribution. The distribution was right-sided – some patients with mesothelioma who lucked out with survival lucked out big. Gould was initially despondent when he saw that the median survival of his cancer was so short. Gould was an optimist. He was dealt a rough hand but was not going down without a fight. His optimism, and fight, increased as he unraveled the distribution – first with the hope that he could be in the lucky half of the distribution, then with the hope that he could be one of the outliers in that skewed distribution, then with the hope that the treatment that he was being given, an experimental cocktail, could make him a lucky outlier.

Gould lived twenty years after his diagnosis, perhaps, in part, because of his optimism, although we don’t know for sure that optimism helped. Gould didn’t know for sure that he would be an outlier. He did not choose to be in the long positive tail – he hoped he was. He could, quite easily, have settled his affairs, written his will, and traveled the world believing he had only 8 months to live. For every optimistic Gould who lives twenty years with mesothelioma there may be ten optimistic Goulds who live only two months.

Gould’s story is at the heart of tension in evidence-based medicine (EBM). This is not a tension, strictly speaking, but an uprising. EBM is driven by central tendency – averages – amongst others. But averages are built by individuals who vary. Variation is a fact of life. All theory is gray, said Goethe. And gray, not black and white, is the only truth in medicine. Actually, variation is only half-truth – half remains concealed because whilst we know that we’re part of a variation we don’t know where exactly we’re placed, we don’t know which shade of gray we belong to.

Cancers vary in prognosis. Cancers vary in their response to treatment. This begs the question: in the absence of perfect information, what should the oncologist tell the patient? Should the oncologist reveal the median survival only? If so, why? What normative ethics say only the central tendencies of a distribution be disclosed? Should the oncologist give a whiff of hope that the patient could be an outlier? Should the oncologist mention the short left and not long right tail and stress the imminence of death so that the patient can die gracefully? What is the truth – is it the median, the long tail of optimism or the short tail of pessimism? If all three are truths which truth should be mentioned first and which truth should be mentioned last?

The simplistic answer is that it depends on the patient. My friend, an interventional oncologist, tells me that patients seek him for hope. He gives them hope and is unapologetic about doing so. Some might say that he gives his patients false hope – but that accusation assumes a numerical probability of death, a threshold or a range, which neatly separates false from true hope, hype from reality. There is no such number and even if it existed it’d be near impossible to give every person their unique threshold of true vs. false hope, as the question will once again arise – what if I’m the lucky outlier?

When I pressed my friend further about false hope, he retorted. “I’m an oncologist, not a fucking undertaker.” Fair point. Many of his patients, with livers riddled with metastases and a hopeless prognosis, see the undertaker shortly after his interventions. Because hope is most in demand when reality is most hopeless. His patients see him for possibilities, not limitations. Like Gould, his patients wonder if there are outliers (there often are) in the survival distribution of their advanced cancer, a few extra months or even weeks, and if they could be that outlier.

My friend blasts his patients with chemotherapy and if there are new agents, he tries them out as well. There are no short cuts with hope. When he suspects a complication of cancer, such as a clot in the lungs, he goes after it with hammer and tongs. Because there’s no retreating from hope.

Most patients who wish they are lucky outliers won’t be lucky outliers. The difference between hope and reality, therefore, is overtreatment. Hope and overtreatment are a dialectic – a marriage of convenience. Hope is a state of mind, a culture of expectation, will of the people, a belief in self-determination, and a rejection of the afterlife. Hope can’t be switched off by pressing a button. The most powerful driver of medical costs at the end of life is not the incentive structure. It is not doctors’ fear of being sued. The most powerful driver is hope.
(This piece originally appeared in 3 Quarks Daily)

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19 replies »

  1. Good point William
    How can the majority of the people take care of the majority of the people?
    When math fails, one turns to magic
    Taxes go to the Treasury’s general fund
    Remember these forced charitable donations are really taxes
    The Treasury’s general fund pays for General appropriations, of which the private insurers receive
    If their portion of the federal budget is 5 percent, they receive in cash 5 cents of every dollar
    The other 95 percent is comprised of debt (manna from heaven)
    Unfortunately, the manna from heaven is more realistic than the magic of creating money out of thin air
    This is because only a God can create something out of nothing

  2. Barry, 400% of the FPL is about equal to the median income of Americans…@70k. If you want these eligibility caps to be removed, this means you want majority of people to take care of the majority of people. This means you like money to take round trips to Washington DC. The insurance principle is that you pool the majority to take care of the minority.

  3. People need to accept their mortality
    Until that is done, there is no way to make reasonable decisions
    In addition people should have the option of foregoing treatment in lieu of their insurer paying a death benefit to their heirs

  4. Of course, when you think about it, we are all facing certain demise, with the only difference being longer actual horizons. Life is a terminal illness is true at any age. So maybe patients who are close to death have distortions in how they view the passage of time and their expectation of the time remaining are exactly like our expectations.

  5. “I’ve read that some patients don’t want to disappoint their doctor(s).”

    Do you think a lot of patients are going to take a drug that makes them sick and throw up just to please their doctor?

    “Others do it to please family members.”

    Do you think that is a doctors decision or the patient’s?

    “Still others want to be perceived as willing to “fight” which is seen as brave and courageous rather than to “give up” which is viewed as weak and cowardly, at least in our culture.”

    Are you arguing for psychiatric care before providing treatment?

    “Are they told enough to make a fully informed choice?”

    Are you accusing doctors of not fully informing patients for their own personal gain?

    “Yet, in other countries, people are more accepting of death when their time comes. Why is that?”

    Different cultures act differently as do people of different socio economic classes.

  6. I would be interested in knowing more about why most patients want to try to eke a few more months out of life when they have late stage cancer. I’ve read that some patients don’t want to disappoint their doctor(s). Others do it to please family members. Still others want to be perceived as willing to “fight” which is seen as brave and courageous rather than to “give up” which is viewed as weak and cowardly, at least in our culture. I’ve heard doctors advise some patients that additional treatment would be accompanied by severe side effects that would make them even sicker than they are now. Would they rather have three months of relative comfort and the ability to interact with their family and friends or six months of misery from experimental treatments? Are they told enough to make a fully informed choice? The issue of money doesn’t even enter the discussion, at least for those with decent insurance. Yet, in other countries, people are more accepting of death when their time comes. Why is that?

  7. Great writing, as always, Saurabh. Hope is indeed the psychological basis for over-treatment. The problem, however, is that hope is also the psychological basis for *any* treatment.

    Michel

  8. That must have been rough, Bobby.
    An ER physician I knew got melanoma and refused to have any therapy. This was before there was immunotherapy and this particular CA was notoriously difficult to treat. Sometimes it does OK now.

  9. Now it seems you are saying that maybe most oncologists aren’t mean, but they aren’t forthright and might be still holding out hope. Most patients want hope and they are willing to take treatments even though they realize that only outliers benefit. (see Dr. Palmer’s statement above.) You keep blaming the doctor. Do you want him to deny the patient the hope the patient wants? Do you want him to stop treatment when there is still a chance the patient can live a good number of years?

    I don’t think there are many families that don’t know of hospice and palliative care. If a patient is in pain he asks for pain medication without even knowing the words ‘palliative care’. Stop blaming the physician.

  10. No I’m not accusing them of being either mean or money hungry. They may even view being less than forthright when the prognosis is very poor as not abandoning the patient or still holding out hope. They may view hospice or palliative care as admitting defeat but I think patients and their families should have enough honest and objective information to make their own informed choices given the circumstances they face. If they’re insured, money is probably not an issue but how they want to spend the time they have left is an issue or at least it should be.

  11. Are you accusing most oncologists of being mean money hungry physicians that place their needs before the needs of the patient?

    The reason for insurance is to spread the risk for these expensive procedures. Spreading the risk can be done privately with subsidies where necessary. There is also Medicaid which is responsible for so many of the newly insured under the ACA. Not a great insurance, but is the ACA’s claim to fame.

  12. My late daughter decided one day “enough of this shit,” and pushed the nurse’s hand away when she came in with her chemo shot. “‘I’m not doing this anymore.” She died about 3 weeks later. Fearlessly. http://tinyurl.com/ocflbyw

  13. People need health insurance to cover the big expensive stuff, especially hospital based care, cancer treatment, kidney dialysis, expensive specialty drugs, etc. Most people who didn’t have health insurance before the ACA didn’t have it because they couldn’t afford it. The ACA helped them to afford it via subsidies and the expansion of Medicaid. If anything, the subsidies should be further expanded by fixing the family glitch in employer coverage and removing the current income eligibility cap of 400% of the FPL.

    As for cancer treatment, patients rely on doctors to lay out treatment options, provide an honest and objective prognosis and describe the quality of life implications of various treatment options. For oncologists determined to provide hope or at least not withdraw hope, they have an incentive to be less than completely forthcoming when the prognosis is dire. People can argue about the appropriateness of that approach but whatever treatment regimen is decided upon, I think patients are reasonable to expect that most of the cost will be covered by insurance including the cost of hospice or palliative care if and when it comes to that.

  14. My daughter is a radiation oncologist and her husband a medical oncologist and they both tell me how much their patients want to get a few more months out of life. They say it is rather astonishing.

    They realize that most of chemo ekes out only a few more months of benefit. But there are wonderful exceptions…

    It’s a hard call if you were the God of health care. But, if everything were cheap, it would be an easy call.

  15. Barry, you write “I wonder how many would proceed if they had to pay for treatment with their own money even if they could easily afford to which not many could. At the end of the day, it’s a lot easier to spend someone else’s money, especially taxpayers’ and insurers/ than your own.”

    Isn’t letting people spend more of their own money or permitting insurers to charge for risk a way to tell us when to stop?

  16. On the other hand, Barry, isn’t that exactly what you are doing when you provide hope in the form of the mandated ACA? There you are using other people’s money magnifying the hope that presently you are decrying.

  17. Fair points Dr. Palmer. Of course combatting terrorism or a flu epidemic or plague are population level investments whereas expensive treatment for a late stage or rare cancer is an individual level investment / cost. With finite resources and lots of worthwhile priorities, both public and private, the issue comes down to socialized cost as opposed to individual out-of-pocket cost. Or, to put it more starkly, how much should society be prepared to spend to keep one person alive even when the prognosis is dire and the individual has already lived a normal life span and then some? One criticism I hear frequently from foreign healthcare experts about the U.S. healthcare system is that we don’t know when to stop.

  18. Once in awhile, very rarely, maybe one case in 10,000, cancers disappear. The two that seem to do this the most often are papillary CAs of the thyroid and renal cell carcinomas.
    Do you think hope is the same thing as a placebo? Does hope compress morbidity? Do we actually do better with more qalys if we are given hope? If there is a systemic societal reduction in hope–say from an increased level of terrorism or a lethal flu epidemic or the plague, etc.–do people generally have a worse outcome from all illnesses? Does hope sustain helpful behavior (e.g. taking your meds properly)? Does one family member with hope give resiliency to the other family members?…as if hope were contagious? We all are hoping for love, recognition and beating death. Hope is incurable. It is a little speck of psychosis that we all have.

  19. When your friend is providing hope, I wonder if he also provides an honest description of the quality of life implications that are likely to result from the treatment the patient is signing up for. If the patients are fully informed of those quality of life implications and still want to proceed, I wonder how many would proceed if they had to pay for treatment with their own money even if they could easily afford to which not many could. At the end of the day, it’s a lot easier to spend someone else’s money, especially taxpayers’ and insurers/ than your own. Finally, I wonder how many of these hope providers will let their patients anywhere near a palliative care specialist or even let them know that palliative care is an option for them.

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