Aging, suffering, and the inevitability of death: Let's keep it real, and ignore the quacks

My friend Paul Taylor, longtime journalist and former executive at the Pew Trusts, has just published a new book called “This Is Getting Old: Two Boomers and Their Generation at Dusk”. It has two main topics. The first is an often-disturbing analysis of the impact of the “Boomer generation” as a whole, focused on their (our) massive accumulation of money, fighting for society’s resources to be directed to us, and shockingly, away from those who need it most, children. There are clearly many different indviduals in this generation, as well as subgroups (since boomers were born 1946 to 1965, the usual characterizations of us in our youth, activism in the late 1960s, obviously are only about the older part of that cohort). He makes the point that not only did this generation, as many before, get more conservative as they aged, but that only a portion of them were ever progressive. And the contrast between their generosity to their own children and grandchildren, and their parsimony toward most of society’s children is, at least coincidentally (as he states it), or definitely (as I think) about the color, race, and ethnicity of the majority of today’s children. Did I say this was shameful? If not, I do!

The other focus of the book is the aging of his, their, and our generation, focusing particularly on one couple (a terrific, impressive, warm and active couple), but also full of data on what is happening to all of us. Which is the same thing that happened to everyone before us, getting old and eventually dying. We may be dying older, and dying of different things, and (many of us) having more healthy and productive years before we die, but we all die. And for many of us, perhaps most of us, as all through history, that dying will be preceded by a period – which can be short or be many years – of suffering, of being sick, in pain, losing our mental faculties, or all of these. Guaranteed. While billionaires are being quite successful in avoiding (at least for themselves) the other of that famous pair, taxes, avoiding death is, even for them, only a science fiction cryogenic dream for them that has not yet happened. Thank goodness. If there are any people that the future does NOT need preserved for them to deal with, it is the billionaires most assiduously working on it!

So, we need to remember not only the inevitability of death, but the suffering that so often precedes it. We boomers have been watched it in our parents, our older relatives, and, sadly, many of our peers. It is well to remember the myth of Tithonus, who was granted eternal life by Zeus, but not eternal youth. He continued to age, alive and living sicker and more decrepit. A more modern self-deception: a few decades ago, I was the only physician in a health policy class. Each week one student had to make a presentation to the class on a particular topic. The student who addressed the issue of “long term care” did present data, but then added that in their opinion the need for long-term care would decrease because people were taking better care of themselves, exercising and eating better and not smoking. I pointed out that this would obviously increase the need for long-term care, as people would less often die young from heart attacks and more often live older and older (if not eternally, like Tithonus) with more and more care needs. I suspect I even said something like “if you want to decrease the need for long term care, have people smoke, drink, eat poorly, not exercise and drop dead in the 40s and 50s”.

But that student, and others, were young. Somehow, they conflated living a more healthful lifestyle, and having better health in the near and medium term, with not ever confronting getting old, sick, and dying. That is purely wishful thinking. While living more healthfully is a good idea, it cannot prevent the inevitable. And yet, many people, even today, believe this that somehow they can and (more venally and evilly) are selling it to others. Some of these ideas are commonly associated with folks like Secretary of Health and Human Services Robert F. Kennedy, Jr. (how painful to associate that name and that title!) and the MAHA (Make America Healthy Again) movement. Like the MAGA (Make America Great Again) of Donald Trump, the key point is the “again”. In the case of MAGA, it depends on what your definition of “great” is – probably America was if it means slavery, racism, subjugation of women, and constant wars, with military budgets making up the biggest part of public spending, the funding of which comes disproportionately from those with lower incomes.

In terms of MAHA, while there may be a bit less subjective flexibility about defining “healthy” than “great”, there is definite disagreement about the road to health. For example, a recent study by the Edelman Trust Barometer produced the table below. About a quarter to a third
of Americans believe each of these falsehoods, and 70% believe at least one, with a whole bunch of folks who “don’t know”. Edelman calls these claims “false or unproven”, which is generous. To a greater or lesser degree, they are all false. The most dangerous are the claims about vaccines, which are good, and to a large degree the reason that boomers and others are likely to live as long as they are. As a t-shirt I have seen correctly asserts “Vaccines cause adults”!

 

 

Unpasteurized (ie, raw) milk has in fact caused lots of deaths because of bacterial contamination. Testimonials from dairy farmers who drink it all the time are not valid for urbanites who are consuming it days after milking, when the bacteria in it that would have been killed by pasteurization has had time to multiply, The other false claims may not cause death, but sure can cause suffering; I suffered a lot of dental cavities as a kid before our water was fluoridated. Fluoride is definitely helpful to dental health (excessive amounts can cause unsightly, but NOT dangerous, mottling of teeth). Avoiding acetaminophen in pregnancy can cause pain. And on animal protein: it is not more healthful than plant protein, it is in fact, generally less healthful. As is animal fat (e.g, tallow, lard). 

These false claims are relatively easy to refute, although it is not easy to convince people who believe them that they are wrong; these are two different things. But what of the amazing plethora of other magical health claims, today’s equivalents of snake oil (in promises for great health, not to mention quackery). Early in his book, Taylor writes 

Don’t pick up this book expecting to find the magic formula for staying forever young. I ain’t got one. You’re better off cruising TikTok, where a bustling industry of anti-aging influencers serves up a bottomless banquet of science and quackery. They treat aging as a curable condition, death an avoidable fate. 

Sigh. It would be wonderful if these nostrums could keep you healthy and keep you from dying. But they don’t. That doesn’t keep them from being a “bustling” (and profitable!) industry.

Three points:

1) Natural is not necessarily better or safer. That is a fallacy. Anything that actually has biologic effects can have the ones you want, and the ones you don’t (side effects). If it doesn’t have any biologic effect, it’s not helping either.

2) Don’t be a sucker. Yes, Big Pharma is evil, but there is much better data on whether and how its products work than those of the MAHA-hood.

3) If it sounds to good to be true, it probably is.

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.