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.