Adding Insult to Illness

It turns out that there may be something worse than having end stage cancer.  That is getting chemotherapy when you have end stage cancer.

A new study in JAMA Oncology found that such chemotherapy didn't achieve its supposed purpose in patients within the last six months of life.  For sicker patients, it didn't improve the quality of life (QOL) in their final week (QOD), relative to patients who did not receive chemo.  Worse yet, the patients who began the chemo healthier fared worse than similar patients who did not receive it.  The authors concluded: "Not only did chemotherapy not benefit patients regardless of performance status, it appeared most harmful to those patients with good performance status."  The authors call for changes in guidelines relating to use of chemotherapy in terminal patients; I should certainly hope so.

As if all that wasn't bad enough, in true U.S. health care system style, patients -- and their health plans -- pay dearly for this torture-as-treatment.  More on that in a bit.

No one is saying chemotherapy has no value, particularly for cancers caught in the early stages.  Part of the problem is that it's hard to prospectively tell who is in their end stages, which the study defined as the last six months of life  An accompanying editorial in JAMA Oncology by Blanke and Fromme cited a study that found that estimates of patient survival were inaccurate 80% of the time. 

They go on to say: "We believe the efficacy results by Prigerson et al are generally true, represent current practice, and stand as a relative indictment of routinely offering chemotherapy to patients with terminal cancers." 

Blanke and Fromme feel that the problem lies both in oncologists not wanting to have the hard conversations with patients and in patients wanting to fight "until the bitter end," as they put it.  Perhaps these kinds of difficult conversations will become more common if Medicare implements its plan to start paying for them, although I'm just waiting for the crazies to come out with their "death panels" objections. 

The fact of the matter is that people do die and that sometimes more treatment causes more harm than good.  It isn't always easy to tell when that is, but pretending that our typical "more is better" attitude is always best is simply putting our heads in the sand. 

And we can't ignore the financial side of all this.

A few days ago a group of over 100 leading oncologists co-signed an editorial decrying the high cost of cancer drugs in the U.S.  They applauded the progress that is being made in cancer therapies, but noted the high cost and cost increases in these therapies, and expressed concern about the burden they place on patients and the health care system overall. 

In a nutshell, "the current pricing system is unsustainable and not affordable for many patients."

Drug prices generally have been criticized widely lately, with cancer drugs being a particular target but not the only.  Treatment for Hepatitis C, for example, is proving more expensive than many Medicaid programs can afford, spurred but effective-but-expensive drugs like Sovaldi.   

Hey, at least the Hepatitis drugs actually promise hope of curing the disease, whereas many of the new cancer treatments offer marginal, if any, improvement over existing therapies -- but at a much higher cost.  As David Howard, a professor of Public Health at Emory, told the Wall Street Journal,
"The U.S. has always taken a very hands-off attitude, that patients are going to have access to new medical treatments regardless of the cost."

Maybe it is time to start just saying no.

Pharma's defense of their pricing is that they need to invest in R&D to generate clinical breakthroughs, especially since margins are generally much smaller in countries whose governments directly negotiate prices.  Fair point, although there is some question about how closely R&D investments actually do track with rising revenues and, at some point, R&D needs to be paid by all customers, not just the gullible ones like us.  

The New York Times reported that all the furor over drug prices is generating a groundswell for greater transparency about them, but I'm not sure how much good that will do (assuming we could figure out what the real "price" of a drug is, what with discounts, rebates, and other behind-the-scenes deals that are common in the industry).  We only care about costs when we have to pay them directly, not when our health plan pays them.  According to Medscape's 2015 Physician Compensation Report, only 25% of physicians regularly discuss costs with patients anyway. 

Costs and terminal prognoses seem to be two topics that neither physicians nor patients really want to talk about.

What we should care more about is paying for marginal improvements in life expectancy.  How much should we pay for an extra two months of life, especially when those last two months are spent in misery?  It's not the kind of discussion that we seem to know how to have, and it literally is costing us -- not just in dollars but also in patient quality of life.

It's easy to blame the drug companies for pushing expensive treatments that don't provide much value, but they're not the ones writing the prescriptions, nor the ones demanding them.  That falls on our doctors and ourselves.  We may pretend that financial considerations don't matter, just as we can try to pretend that there are limits of what can be done to keep us alive, but what's silly is for us to keep pretending that we're not pretending.

It's easy to castigate the various parties who profit from care that doesn't actually help, and may hurt, patients, but we shouldn't be spending our time looking for the villains here.  Everyone says they're looking out for the patients' best interests, but that doesn't appear to be the case.  If we truly care about that, we should start with telling the truth, even when that truth isn't what the patients want to hear. 

And when I say "telling the truth" I mean not just not lying, but truly being open -- about costs, risks/benefits, and all the other messy complications that muddy recommendations for treatment.  We want simple answers, clear choices, and quick fixes, but those aren't always possible. 

Our health care system is most known for being expensive and disjointed.  We may or may not be able to change either of those anytime soon, so wouldn't it be great if we could at least be known for being the most honest with patients?