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.

Nursing homes, assisted living, and home care: Can we have reliable quality?

Getting older is unavoidable (until the end); I myself have been doing it all my life. When I was a child and getting older (being a teenager! Or an adult!), it was an entirely positive aspiration. Now, not so much. We know that we will die, and as we grow old, if we are lucky enough to not die young, we know that are going to meet that end sooner rather than later.

As I have grown past “Medicare age”, I have personally experienced many of the issues that I have worked through with patients over the decades, and am also experiencing (vicariously, but closer) the travails of my much-older parent. While not everything that happens with aging is negative (retirement, not going to work every day, is a major positive, provided you can afford it!), the body and the mind can’t do what they once did and often really start to fall apart. Those of us who are lucky enough to avoid dementia, from Alzheimer’s disease or another cause, still find ourselves with memory lapses. And hopefully, we can continue to find ourselves, and our keys, and remember the word or name that we know so well but just is evading us, or the reason we came into this room. A colleague of mine calls this “benign senile forgetfulness”, and I guess it is benign, as long as it doesn’t progress too fast.

Aging is a process of the body falling apart. Different pieces fall apart in different people at different rates, and some folks overall do better for longer than others, but there is an inexorable downward progression. There are things that we can do to help, to slow it, to lessen the risks we face (see, for example, Jane Brody’s article on How to Prevent Falls); among the most important is continued physical activity, as vigorous as we are able to do. I tell people, with a straight face because I am serious, that when I was young I worked out to get fitter and stronger, but now I work out to just fall apart a little more slowly.

As we age we are more likely to acquire disease. These include both the diseases associated with aging (although they can occur younger ages) like Alzheimer’s and arthritis, as well as almost all other diseases that become more common and often more serious: heart disease, most cancers, diabetes, stroke, high blood pressure, influenza, etc. The real question becomes when and even whether to treat them. In youth and well into (and past) middle age we are conditioned to think of illness as curable, or at least significantly treatable. This attitude is enabled by the medical profession, that can do so much more than it used to be able to, and the health care industry, which makes money on it. And we tend to take these views into older age, even when the treatment is worse than the disease, as it often is, or there is no demonstrated benefit, and sometimes definite evidence of harm, both in treatment and even in “preventive” screening (see the CDC and USPSTF recommendations for age-appropriate screening).

Aging and its accompanying diseases and infirmities may require a change in our living situation. Options can include living with family members, or having a health aide (living in or commuting, see below), or a variety of institutional settings ranging from “independent living” (your own place, but some easily accessible help, such as available meals and nurse visits), to “assisted living” (regular meals, more nursing and cleaning help, more protected environment) to full-on nursing home (skilled) care. Given the variety of options, both in terms of “level” of care and in terms of quality and cost of provider, we should be able to depend on licensing, legal standards, and ratings. Unfortunately, we are not always able to do so.

“Care Suffers as More Nursing Homes Feed Money Into Corporate Webs”, in the NY Times on January 2, 2018, documents just what the title says. Most nursing homes are owned by for-profit companies, often very large regional or national corporations, and thus there can be cuts in the quality of care (the service ostensibly being rendered) in order to increase profits. Or, looking at it the other way, every dollar spent on actually delivering care is a dollar lost to profit. The insurance industry has a cute term for this, “medical loss ratio”, which is the money lost to the bottom line by paying health insurance claims. In addition, nursing homes contract “out” for many services (food, cleaning, etc.), and management of the homes, and rent for the buildings. The companies that they contract with are often owned by the same people, but through this trick these costs now become fixed expenses, not covered by regulations governing the nursing home itself. Voilà! Instant profit!

Similar problems abound in other levels of care. “U.S. Pays Billions for ‘Assisted Living,’ but What Does It Get?”, NY Times February 3, 2018, documents the low quality of care often provided to people in assisted living for whom Medicaid is paying as much as $30,000 a year (for assisted living, mind you, not even for skilled nursing services). Part of the problem in this case is that, because Medicaid is a joint state-federal program, they operate “…under a patchwork of vague standards and limited supervision by federal and state authorities.” And, again the people being cared for are the ones who suffer.

So there is good reason to be concerned about these institutions. What about home care? At least that is in your own house, right? On January 31, 2018, the Times had two articles about it. One was from Britain, although it is actually describing institutions, “home care” settings that are like small private assisted living facilities. “Britain Was a Pioneer in Outsourcing Services. Now, the Model Is ‘Broken,” discusses serious adverse health outcomes for people in “home care” there. This could be seen as a ‘gotcha’ for those of us who advocate a national health system, which Britain has, but there are some important caveats. One, of course, is that these are not “home care” in the US sense, and a second is that the fault is clearly not with having a national health system, but rather the efforts to privatize aspects of it (“outsourcing”) which has failed because – surprise – these private sector companies make more profit if they provide cheaper, read “worse”, care! The less national, government involvement, the worse the care.

The other important point is to remember the difference between how much money is spent and how it is distributed. The US spends a lot of money, but it is incredibly unequally distributed among the population. Britain distributes it much more equitably, but has (particularly under Tory governments) underfunded it, including the efforts to privatize aspects of it described in this article. Now, if the US distributed its health care funds in a manner similar to the British NHS, it could spend a lot less and the people would get a lot more!

The other article, from the US, is about what we truly understand to be home care, but its focus is not on the quality of care for patients but the difficulties confronted by the home care workers. Titled “For Health Care Workers, the Worst Commutes in New York City,” it specifically addresses the commutes (from poorer neighborhoods where the mostly-minority mostly-female home care workers live to where they work). But these workers are also poorly paid and lack benefits, often including paid time off, and ironic but true, health coverage! They are, of course, employed by for-profit companies. We depend on these people to care for our parents, or us, but like many involved in the doing-actually-important-things-that-make-a-real-difference-in-people’s-lives industries (e.g., teaching, social work, etc.) they are underpaid and undervalued in comparison to those in the let’s-make-a-lot-of-money-for-ourselves-and-the-heck-with-them industries.

Those who advocate a for-profit capitalist market as the solution to all problems, and particularly the privatization of currently government-run activities, claim that the private sector can operate more efficiently and more cost-effectively, and provide better service than a government bureaucracy. This claim usually turns out to be untrue. Such companies, particularly when gifted with government contracts, are better at making profit, especially by keeping down workers’ wages and cutting back services. When we talk about the care of our seniors, our parents, ourselves, the tradeoff between adequate care and profit is not one any of us would want to make; we want the best quality of care, period. So whether this is compromised by inadequate funding, as in the case of British home care, or (almost worse) adequate funding but excessive profit-taking by the private sector, it is unacceptable.

There is an answer. Have the structure of our society reflect the things that most people actually value. Have a well-funded national health system or a well-regulated private one, that ensures quality of care for its clients and living wages for its workers. The elimination of excessive profits (or all profit in a government-run system) would make it not only better, but still cheaper than the way we do it now, where the “care” is the “medical loss” to profit.