Cancer, cost, hope, and the responsibility of physicians

The headline on a recent article by Marilynn Marchione of the Associated Press, as featured in the Arizona Daily Star, is “Few doctors discuss cancer costs with patients, study finds”, and that about covers it. The actual study previewed in the article, which will be presented at the American Society for Clinical Oncology (ASCO) conference in Chicago in June, was led by Dr. Rahma Warsame of Mayo Clinic. It recorded clinical encounters at three cancer sites (Mayo, USC, and LA County) and discovered that the often extraordinarily high cost of cancer care was not usually discussed; discussion happened in just 151 of 529 visits, and in only 45 of those cases, less than 1/3, was the issue brought up by the doctor rather than the patient.

The article suggested several reasons for this. One was that the visits were short, 15 minutes at USC and LA County (about typical, though, across the country), and 30 minutes at Mayo. Another was that doctors are trained to diagnose and recommend treatment rather than to focus on the cost. A third is that the doctors themselves might not know the costs of the treatment. And, for a combination of both of those reasons, they might be uncomfortable talking about the cost. Given that these treatments can easily cost $100,000 a year or more, this is not fair to patients. While good insurance might cover the cost, not everyone has good insurance. In addition to the uninsured, many more people have crappy insurance plans with poor benefits and lifetime caps that are easily exceeded with the cost of cancer care. For most of these folks, the answer is go broke and bankrupt, or die without treatment. From a health point of view, this is not a desirable state of affairs. From a medical point of view of trying to do the best for a patient, it is an abrogation of the obligation to provide the best care. From a moral point of view, it is reprehensible. From some points of view, however, it must be ok, because this is the situation we are in, and it is not by accident. And that is tremendously distressing.

But who would have such a despicable point of view? We can start with the organizations that make money from such care. Of course, this includes the very clinical oncologists who are the members of the ASCO, but they are the least of the beneficiaries. Indeed, I feel comfortable saying that most oncologists would enthusiastically welcome lower costs for chemotherapy. The biggest winners are the drug manufacturers, who charge fantastic amounts for these drugs, and the hospitals and “cancer centers” that provide them. A large part of this profit comes from the reimbursement from insurance companies, which, in addition to paying the cost of the drug, also pay an fee to the hospital for administering the drug that is, frankly, exorbitant and far more than is paid for comparable work in provision of most other care. Indeed, this is why there is such an apparent explosion of cancer centers. It is not because of the explosion of cancer; it is because they are big profit centers and every hospital wants their own to try to lure cancer patients (those who are well-insured, it goes without saying) away from their competitors. And, in a step back from my confidence in the patient-centeredness of oncologists, those groups of oncologists who own independent cancer centers outside of hospitals, and make lots of money on it.

Why would insurers pay such high prices? Medicare pays a pretty high “administration fee”, and most private insurers reimburse at multiples of Medicare. Also, insurers can just raise their rates to cover these costs, especially if they value (as in “appreciate the clout because of the number of patients they control”) the relationship with a particular hospital, cancer center, or health system as described in Elisabeth Rosenthal’s “An American Sickness” and discussed in my blog post “United Airlines, health care, and a system designed to privilege the powerful” (April 15, 2017).

Students learn very little about the cost of care in medical school. There are beginning to be some courses that introduce cost-consciousness, but they are uncommon and limited, although even residents and students have access to smartphone information, through apps such as ePocrates®, that provides information about drugs, and often cost.  But is true that these doctors do not know the cost of the care that they are providing? Certainly while the clinical oncologist may not know the exact dollar amount, they know that it is a lot. And it is irresponsible to not discuss this with patients, to help them understand what they are getting into when they start treatment.

Drugs are only one component of the cost of care; a huge one in cancer, but radiation therapy can be even more. As I have discussed before, the real problem is that no one knows what anything actually costs. Yes, hospitals have “charge masters”, but they are not only dense and hard to find (especially for patients) but not that relevant; these charges are adjusted dramatically depending upon insurance. Medicare is unique in that it sets the amounts that it will pay (a lot for chemotherapy), but other insurers pay varying amounts depending upon the contracts that they have arranged with the hospital. Thus we have the irony (which I discussed in “Integrated Health Systems and Cost: The Price is the thing!”,December 20, 2015) that smaller cities with large integrated health systems have some of the lowest costs for Medicare (because they can create efficiencies) but some of the highest costs for private insurers (because they “own” the market and can charge more).

The real issue is that people should be able to get the care that they need and is medically indicated and has evidence to back its effectiveness without going broke. Physicians can no longer hide behind the first half of that sentence, saying “I recommended the care that they need and is evidence-based” (although certainly their recommendations should always be evidence-based!) without considering the cost. On the other hand, the health system of the US should ensure that everyone is covered for necessary care. One way of having enough money to do this is not providing unnecessary, evidence-free care to some people just because they or their insurance will pay for it.

This also means that people should not expect it. As horrific as it is for you or a loved one to be dying of cancer, it is unreasonable to expect that experimental, hopeful, or completely wishful-thinking treatments would or should be paid for by someone else, and it is generally a bad idea to try to pay for them yourself since they won’t work. Some years back, my friend was dying of an aggressive cancer. A bone marrow transplant failed. The genetics of his cancer were such that it was destined to fail. The cancer center (arguably the “best” place in the US for his type of cancer) offered him the opportunity for a second transplant, but the insurance company rightly refused to pay. His family cashed in his entire retirement to pay. Predictably, the transplant failed, and his family was left without any savings. The doctors knew that it would almost certainly fail, and should have known what it would cost, and thus not recommended it. An agnostic stance on cost is unacceptable.

The media coverage of the ACA and the Republican repeal plan makes clear that there are many people who do not want to pay for insurance coverage when they are healthy, but want everything taken care of when they or their family are sick. Then they get desperate and might spend the last of their savings on treatments that will not work, whether quack drugs like laetrile or futile attempts offered by the medical community, such as happened to my friend. It is the responsibility of doctors to know the cost of treatments they recommend and discuss this with their patients, and to not offer ineffective treatments. It is wise for patients also to ask for this, although many are unempowered and intimidated by the medical system.

But if we all pay in when we can and benefit when we need it, the system would work. It’s called single payer, or Medicare for all. Unfortunately, our system, with or without ACA, is nowhere close.

Doctor shortage or shortage of the right doctors?

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The lead article in the New York Times (right column, front page, by Annie Lowrey and Robert Pear) on Sunday, July 29, 2012, has the provocative headline “Doctor shortage likely to worsen with health law.” My first instinctive reaction was “What? I don’t know of any part of the new health law, the ACA, that will reduce the number of doctors!” Then, reading the first sub-head, I realized what they meant. “Primary care is scarce”, something I well know and have written a lot about, and then, in smaller type, “Expanded coverage, but a greater strain on a burdened system.”

What they are saying is that the shortage of physicians, especially primary care physicians, will effectively increase (get worse) as millions more people gain insurance coverage under ACA. This will happen both through expansion of Medicaid coverage or through health insurance exchanges that will permit both individuals and small companies that have not previously had or offered health insurance to buy it at much lower rates. The expansion of health insurance coverage to these groups is a good thing; it will eliminate a major barrier to quality health care, itself a component of good health. Unfortunately, phrasing the problem in the way that the NYT headline does is likely to inflame displeasure with the law among those who, through ignorance or selfishness or both, are happy to draw up the bridge behind themselves, not wishing to share their, often limited, access to doctors with the newly insured. Surely, this is not an acceptable reaction.

The problem is that there are too few doctors to provide each person with full access to care, especially in an aging population because, as noted in a quote from Dr. Darrell G. Kirch, president of the Association of American Medical Colleges (AAMC) “Older Americans require significantly more health care…Older individuals are more likely to have multiple chronic conditions, requiring more intensive, coordinated care.” It is, however, much more about the poor distribution of doctors by specialty (too few primary care physicians, too many of many varieties of subspecialists), by geography (too few in rural and poorer areas, too many in more affluent and suburban areas), and by the insurance status of the patients that they care for (too few who take Medicaid, and even Medicare, and too many willing to care for only those with insurance that reimburses more). And, relevant to the cost of care, too many whose business model is built upon doing high-cost, high-profit procedures even when they are marginally (or not at all) beneficial to the patient, rather than providing the comprehensive care needs of people.

Sadly, and for the wrong reasons, some of this may not come true, so some of the fears of the already-insured may be mitigated. Many states have indicated their plans to not participate in Medicaid expansion despite the financial incentives to do so (the federal government will pay 100% for the next several years, and 90% thereafter). These same states, as well as others, also pay so little under Medicaid that many doctors won’t see Medicaid patients. Unfortunately for that ignorant-or-selfish-or-both minority of seniors who say “keep the government’s hands off my Medicare!”, many of those same doctors are now refusing to accept Medicare patients. Hey, if they can make a big living without it, why should they take care of your mother? So if you are not on Medicaid OR Medicare maybe you’re safe – if you live in a relatively affluent part of an urban area, and have private insurance, and especially if you are in an integrated health system such as Kaiser that provides a strong primary care base.

The NYT article indicates that “Physician compensation is also an issue. The proportion of medical students choosing to enter primary care has declined in the past 15 years, as average earnings for primary care doctors and specialists, like orthopedic surgeons and radiologists, have diverged. A study by the Medical Group Management Association found that in 2010, primary care doctors made about $200,000 a year. Specialists often made twice as much.” In fact the gap is much greater than that between primary care physicians and specialists “like orthopedic surgeons and radiologists”; it can be several times greater. (This is because “specialists” includes, in addition, doctors like psychiatrists and some pediatric and medical subspecialists who earn much closer to what primary care doctors do, and thus bring down the “specialist” average.) A recent estimate was that an anesthesiologist can anticipate earning $7 million more in a career than a family physician!

I woke the other day to NPR to hear Republican senator Orrin Hatch saying “To be clear, it is a disgrace that so many American families go without health insurance coverage.” I was nearly ecstatic; to agree that something is a problem is the first step to getting together to solve it. And, surely, that something is “a disgrace” is even worse than being a problem. I turned up the radio to find out how Sen. Hatch and the Republicans were going to solve it. Unfortunately, that was not to be. It was a sound bite in a story by Julie Rovner titled “GOP Says Coverage For The Uninsured Is No Longer The Priority” (July 27, 2012). I hadn’t known it ever was a priority for the GOP, but this piece laid any doubts to rest. Worse than the double-talk from Hatch was Senate majority leader Mitch McConnell, in this excerpt:

McConnell: "Let me tell you what we're not going to do. We're not going to turn the American health care system into a Western European system. That is exactly what is at the heart of Obamacare. They want to have the federal government take over all of American health care."

By "Western European," McConnell means government-run or primarily government-run. Western European countries also pretty much don't have people who don't have health insurance. And by the way, there are closer to 50 million Americans without health insurance; 30 million is the number the health law is estimated likely to cover.

McConnell never says what the GOP is going to do, but you can be sure it will not have anything to do with covering everyone. This is too bad; there are possible solutions, and many of them are even based in the marketplace. Step one is for Medicare to completely revamp its reimbursement policies. This is because, to a large degree, Medicare reimbursement is the basis for all insurance reimbursement; while they may pay more (say, 1.5x Medicare) the ratios are the same, so if Medicare changes what it reimburses for primary care relative to subspecialty care, other insurers will follow.

In biological systems, the normal situation is to have “negative feedback loops.” For example, if the thyroid gland is producing enough thyroid hormone, it shuts down production in the pituitary gland of another hormone that stimulates the thyroid. When there is not enough thyroid hormone in the blood stream, the low levels stimulate the pituitary to become active, activating the thyroid gland. This is functional. Imagine how dysfunctional a “positive feedback loop” would be – the more the thyroid produced thyroid hormone, the more the pituitary would produce its stimulant, creating yet more thyroid hormone, and soon we’d all be hyper-thyroid and dead!

This is like the current medical reimbursement system. We pay doctors more to do procedures, pay them more to take care of only a few diagnoses in a limited organ system, pay them more if they live in an expensive area, and even more if they refuse to care for those on government insurance. This is a positive feedback loop where you economically do the best being a medical “partialist” in a nice suburban area taking care of relatively well-off people, and worst being a generalist in a rural area taking care of people who need it. Or, if you choose, work less than full time and still make a good living.

Medicare should immediately begin reimbursing primary care at a higher rate, including for the effort and cost of managing chronic disease, so that the income differential between generalists and specialists largely disappears. Then it should increase payments for doctors working in more rural and remote areas, not for “desirable” urban and suburban areas. Doctors practicing in urban underserved areas should get smaller incremental payments (after all, they can live in a “good” neighborhood and commute).

We will still have a shortage of doctors until the pipeline fills, but such a system will decrease the financial impetus to be yet another subspecialist in a metropolitan area that already has enough, and increase the impetus to become a generalist in an underserved area. If we are to depend on the market, this is the kind of market-based approach we need.