Irving Stackpole

No one with any depth of relevant experience would call long-term care in the United States a success. 

You might ask, “How would you define success?” A rational response would include both qualitative (e.g., satisfaction among consumers), and quantitative (e.g., clinical outcomes and economic efficiency). 

As it turns out, either we cannot answer these questions, or the answers are deeply disturbing or embarrassing.

The questions we can’t answer

Are you, or someone you know, happy with the long-term care being consumed? There’s just no way to answer this question, at least in any reliable way. There are some reasonable methodologies that have been developed, however, they are not applied regularly to collect data that is useful. 

The vast majority of the population in the United States does not understand long-term care, and they do not know where to start to find out. Many of them wind up chasing their tails and making difficult, expensive and often inappropriate decisions. There is no “front door” to long-term care, no well-promoted agency, or category of individuals to whom families can turn when the inevitable arrives. 

There are two good reasons for this lack of an authoritative resource.

First, fragmentation in the payment system leads to unnecessary, conflicted and duplicative provider systems. Even many healthcare professionals do not understand the difference between home care and home healthcare. 

Second, providers are highly competitive among themselves. Home healthcare does not play nicely with skilled nursing, which does not play nicely with hospice, and on and on it goes. The result is short-term gain for long-term consumer confusion.

Size matters

In the gargantuan U.S. healthcare system, long-term care is relatively small — about 5% of healthcare GDP. It has not been represented well. It has not had and does not currently have a seat at the table where important policy decisions are made. Why? Money. 

Pharma is always at the table, although it represents only about 10% of the healthcare GDP in the United States. Its private sector companies are profitable, and they are willing to spread the wealth, so politicians pay attention. 

Hospitals, which represent about 30% of the healthcare GDP are also liberal with their lobbying, and they’re always at the table for important policy discussions, despite the fact that they accidentally kill 240,000 to 400,000 people every year (“iatrogenic deaths”) —  an astonishing fact that hardly ever makes it into the news cycle even though this is equal to two Boeing 737’s crashing every week. 

Long-term care doesn’t have the margins, has not competed at the “lobby level,” and so we get left behind. 

We would rather not know

The U.S. has not seriously addressed long-term care because “We would rather not know.” There is a deep and ubiquitous negative cultural metaphor about long-term care. We would rather not face our future selves. They are gray, incompatible with our pioneering, independent self-perceptions. We would rather avert our eyes and pretend it does not matter.

Disturbed by the data

Globally, the U.S. has an enviable record for systematizing and collecting data in healthcare, medical services, and social care. Data collection in long-term care led the world in the 1980s with the development and deployment of the Minimum Data Set. Since this pioneering initiative, long-term care data measurement in the U.S. has devolved and is too often the result of news cycles. One recent is the use of antipsychotics in nursing homes. 

This practice was identified as inappropriate in 2009 in part because of muckraking news headlines. Responsibly, CMS implemented new surveillance and penalties in 2012 which have dramatically reduced the rate of antipsychotic use. But these regulations did not address the root causes or underlying issues – families, social service agencies and the entire healthcare system have used skilled nursing centers and residential care homes as warehouses for poor, elderly and often mentally ill individuals. Nursing homes are too often the last destination of last resort.

The recent increase in the use of schizophrenia as a diagnosis in these nursing centers, which allows providers to use antipsychotics that are effective at controlling difficult to manage and potentially dangerous behaviors, has been portrayed in the popular press as somehow the fault of a few careless or irresponsible providers — a position that distorts the underlying facts. 

In a responsible, rational system, decisions about antipsychotic use would be driven by data that is being collected, analyzed, and from which sound policy plans are presented to, and negotiated with the providers who are then responsible for implementing them. Yes, the data is disturbing but not in the way portrayed by news outlets. 

The embarrassing part

For several years, my wife and I have lived half of the year in Europe. Comparisons between how the U.S. accomplishes long-term care vis-à-vis the rest of the developed world are enlightening, often embarrassing. 

The U.S. spends a fraction on long-term care compared to other economically developed countries (≤ 5% v. ≥ 20%). Even though in healthcare overall, the U.S. spends 192% of the comparison group, we spend significantly below average on long-term care, even after adjusting for population size and aging demographics. How is this possible? There are several explanations.

One major reason is cost-shifting, which pushes the burden of caring for the progressively older and chronically ill population onto families and community-based, not-for-profit providers. The estimated market value of nonpaid long-term care in the United States is $470 billion. This fiscal policy is consistent with the absence of child-care, maternity/paternity leave and other social safety net programs. 

A second reason is the pattern of methodically underfunding providers, who are expected to cross-subsidize through other payment and revenue sources. Even though the US institutionalizes a higher percent of its elderly population, state and federal payment models overtly under-pay those nursing homes and residential care homes, expecting that other parties will make up the difference. 

Third, adding further evidence to this bizarrely Hobbesian system, in no other developed economy is there an entire category of attorneys who legally show families how to avoid paying the state for the care which their elderly relatives receive at taxpayers’ expense. It is not illegal, just perverse.

Finally, the U.S. is the only developed economy without a federal long-term care insurance program. Japan, with even more challenging aged demographics, deployed an insurance program for long-term care about twelve years ago. If Japan can do it, the U.S. certainly could. All that is lacking is leadership and political will. 

The long-term view of long-term care is of a system that is not rational, that defies proper measurement, and fails to deliver equitable access. But most people would rather not know.

Irving Stackpole is President of Stackpole & Associates, an independent consultancy in healthcare, senior living & human services., [email protected].

The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.