Healthcare and the End of Life

By Mike Koetting       May 27, 2018

In virtually every conversation I have about health costs, someone says:  “But isn’t the real problem all the money we spend in the last year of people’s lives?”

Well…sort of…but not exactly.

First, end of life costs do not explain America’s uniquely high healthcare costs. The distribution of American costs by proximity to end of life is no different from other developed countries, if anything lower as a percent of costs. America’s costs are high for other reasons.

Hlthcare Last YearSource:  French et al., Journal of Health Affairs

Second, it turns out this spending is not particularly as a result of a “heroic spike” in the last year of people’s lives. Rather, it is as a result of high costs for the last three years of life. While this suggests there may be a longer period of reduced-quality life, it is a more complex picture than imagining we could, somehow, just cut out some futile interventions at the very end of life and save a bunch of money.

The underlying reason for these high costs is the dramatic change in the course of diseases in the last 100 or so years. For all of history, the basic drill was that if you got seriously sick, you died. For instance, in 1900 diabetes was typically fatal within a few months. But since then, humanity has made great strides in understanding disease and pushing death further into the future. Which is by and large a good thing. But all this progress comes at a continuing cost.

Because we are much better at preventing people from dying of the first serious thing that hits them, or even the second or third serious thing, we wind up with many more old people who have multiple issues, or, in the words of the epidemiologists, who have “multimorbidity.” They estimate that half of the over-65 population has multimorbidities. Almost 40 percent of Medicare beneficiaries have four or more chronic conditions, and the percentage is expected to increase materially as the population continues to age.

It is the treatment of these patients with multimorbidity, particularly when combined with frailty and cognitive impairment, that really drives costs. Only 11 percent of the individuals with the highest annual healthcare costs are in their last year of life, while an estimated 40 percent of the highest cost patients are not in their last year of life but are living with multimorbidity and functional limitations. Not surprisingly, these are difficult patients to treat. Clinical treatment guidelines are typically developed for single disease treatment paths, and when several of them are needed, the recommendations don’t always mesh smoothly, the drugs counter-indicate, and so forth.

None of which is to say that there are not material expenses in the last year of life with uncertain value for the recipients or society. In the last six month of life, approximately two-thirds of Medicare decedents have at least one hospitalization, 40 percent spend time in an ICU, and 25 percent experience multiple hospitalizations. These numbers or stable, or possibly even growing.

All this might, at first blush, be somewhat surprising given the emphasis on hospice care in the last 30 years. In 1986, hospice was made a Medicare benefit on a non-experimental basis. Since that time, the number of people receiving hospice care has increased steadily and now about half of Medicare decedents have received hospice care. There has been a corresponding increase in home deaths over the period, and a decrease in hospital deaths. But it hasn’t had much impact on costs because the use of services prior to death has not declined commensurately. In fact, it rather appears as if hospice care is becoming an “add on” health service after extensive use of other resources. Most hospice patients spend a very short period under hospice care, more than a third less than a week and almost half die within two weeks. One study has shown higher rates of hospitalization and attendant services in patients who enroll in hospice care for the last seven days of life than those who never enrolled in hospice at all.

There are multiple, interacting reasons why hospice has not had the impact imagined. The primary reason is that the benefit has been designed as a “stepping to death” benefit. The problem this creates is not simply the psychological difficulty of accepting death. While that is surely some factor, most people approaching this juncture are not fooled about their circumstances. The more fundamental problem is that the way the benefit is structured does not square with the actual needs as experienced by people in the throes of unbelievably difficult situations. Specifically, the hospice benefit is deliberately designed to silo these patients away from hospitals and all the other familiar places and modes of treatment. While this makes certain sense, it leads to other issues.

Most egregiously, a patient loses access to his/her previous physicians, which can be a huge loss for a dying person. More subtly, the current design does not take into account the actual mix of services that people need. The historical roots of hospice care are found in cancer treatment. But advanced cancer has a much more consistent trajectory than the many other diseases that are common in Medicare patients and now compose the majority of hospice patients. The issue is further clouded by the increase in multimorbities described earlier. These other issues, or constellation of issues, will often require more varied services, including hospitalization, purely to manage symptoms. Deciding to cut all these cords at a moment of greatest vulnerability requires a kind of courage that many people, not to mention their family, might find hard to come by when already facing the major crisis of imminent death.

Also, little understood, is how skimpy the actual services provided by the hospice benefit are. Although the official description sounds comprehensive, the reality is much, much more limited–one or two regular nurse visits per week, one home health visit, certain medications, and devices. Some other services are also available, but the reality is that the services are nowhere near what is necessary to provide a dignified and humane death. Truly caring for a dying person requires other major resources, either provided out-of-pocket or out-of-family. When my mother rejected the hospital care and procedures offered and opted for hospice care, it required a massive family effort. My sister and sister-in-law became virtually full-time caregivers for three months, I took off from work to provide back up services, and we hired home health aids to cover at night. Not many families are in a position to provide such support. Other options may be much easier.

Thus, once again, we find a shortage of magic bullets. We don’t spend more at the end of life than other countries but we still spend a lot, driven in part by the fact we can treat enough serious diseases to keep people alive until their care becomes really complicated. Our first big shot at addressing this, hospice care, hasn’t worked out as imagined. We need some other approaches; the next post will offer some general thoughts. But, not to dampen your enthusiasm, while we can improve quality of life, I don’t think it is going to get a lot cheaper.



NOTE: While this post pulled from a variety of sources, it is particularly indebted to “Epidemiology and Patterns of Care at the End of Life: Rising Complexity, Shits in Care Patterns and Site of Death” by Melissa D. Aldridge and Elizabeth H. Bradley.

ERRATA: The first map in the initial version of my last post was incorrectly labeled. Thanks to one of my alert high school classmates; he pointed out that a 1140/1000 incarceration rate was oddly high—even for Louisiana. I have remediated my mistake and apologize for any confusion. Changing the metric from per 1000 to per 100,000, however, did cause me to focus a little more on Louisiana’s incarceration rate: more than 1% of the state’s entire population is incarcerated. Surely there is better way to provide social welfare for the people of the state.

Author: mkbhhw

Mike Koetting’s career has been in health care policy and administration. But it has always been on the fringes of politics. His first job out of graduate school was conducting an evaluation of the Illinois Medicaid program for the Illinois Legislative Budget Office. In the following 40 years, he has been a health care provider, a researcher, a teacher, a regulator, a consultant and a payor. The biggest part of his career was 24 years as Vice President of Planning for the University of Chicago Medical Center. He retired from there in 2008, but in 2010 was asked to implement the ACA Medicaid expansion in Illinois, which kept him busy for another 5 years.

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