When It Comes to Cancer, Hope at the Margins of Success is Medically Necessary

Disease Management Care Blog readers saw it here first.

Months ago, the DMCB presciently argued that cancer patients' appetite for high expense and low yield treatments was based on more than desperation.  It said it was also based on doctors' and patients' quite rational realization that these treatments could rarely result in meaningful life prolongation.  In other words, while an "average" life expectancy from a particular treatment might be reported to be "only" six months, knowing that some persons make it to 12 or more months while others died immediately (zero months) could prompt a reasonable cancer patient to choose a shot at getting the twelve months.

The prestigious medical journal Health Affairs has finally caught up the the DMCB.  In the latest issue, Darius Lakdawalla and colleagues surveyed 150 persons with either breast cancer (N=47, 20 of whom had advanced disease), melanoma (N=20) or other types of cancer (N=83). 

There were two surveys dealing with breast cancer and melanoma that presented two nominally equal chemotherapy treatment scenarios.  One used a "hypothetical" survival outcome based on the usual kind of "average survival" statistics.  The other presented a "hopeful" survival outcome that reported a "spread" of survival statistics that included the small number of persons with shortened as well as prolonged lifespans.  The surveys were conducted face-to-face using interviews on representative patients drawn from multiple cancer treatment centers nationwide.

According to the authors, the survey was designed to test the appetite for risk among cancer patients. Behavioral economists have long known that persons generally prefer the "sure bets" ($100 now) over equivalently valued "hopeful gambles" (a coin flip to win $200 or lose it all).

It's also known that persons who are not well-off have a greater appetite for the hopeful gamble.  Betting a relatively small amount with a large upside explains the luster of low odds state lotteries for socioeconomically disadvantaged persons. It could also account for the willingness of very sick cancer patients - who have little to lose - to demand long shot treatments, even if they're toxic and experimental. 

The results showed that 77% of the survey participants preferred the hopeful gamble scenario. 71% of the patients with the melanoma scenario were prepared to "bet" two years of life in return for a 20% chance of living 4½ years. Among the patients with the breast cancer scenario, 83% were willing to bet 1½ years for a 10% chance of living 4 years. 

These preferences were also accompanied by a willingness to spend a lot of money to access the bet. On average, the melanoma patients were willing to pay at least $45,000, while the breast cancer scenario patients were willing to pay at least $90,000.  Persons with higher income levels were willing to pay even more.

While the authors correctly note that more research is needed, the DMCB suspects this could explain the decision-making that's leading many cancer patients to demand insurance coverage of experimental, high cost and low yield treatments.  Not only does it make intuitive sense, but popular media extolls the intrepid hero who prevails and gets the girl, wins the talent show or defeats the aliens despite little chance of winning.  We're a culture inculcated with high stakes gambles,especially if there is little to lose.

The DMCB recalls one of its middle aged patients with colon cancer that had spread to his liver.  After multiple rounds of surgery (half his liver was removed), chemo and radiation, he was swollen, sickly, tired, gaunt and moribund.  He agreed the treatments were pretty bad - until he considered the alternative.

Assuming IPAB survives, do we really think their pronouncements based on the usual approaches to comparative outcomes will really convince cancer patients to not seek hope?  Will they really determine that hope is not medically necessary?