What Has Become of the Patients?

Frontline physicians are reporting a mysterious phenomenon—as hospitals began preparing for and in some cases started receiving an onslaught of COVID-19 patients, patients with other conditions such as heart attacks, stroke, and appendicitis became a rarity. Where, asks the New York Times, are all the patients?

While much of the evidence about declining hospitalization rates is anecdotal, hard data are emerging.The information from disparate sources now strongly suggests that the decline in hospitalization for heart attacks, strokes, and other potentially treatable serious medical problems is real. 

Assuming that the rate at which Americans develop these problems has remained unchanged, and there’s no reason to believe otherwise, the logical conclusion is that patients are staying home. Given this likelihood, the important question to ask is not where are the patients. It’s what’s happening to them? Are they dying? Are they surviving but with significant, avoidable deficits? Or are they doing just fine? And why did they stay home? Were they terrified of going to the hospital, worried about contracting COVID-19, and did not even call their doctor for advice, as is generally assumed? Or did they try, unsuccessfully, to contact a physician by phone or video? Might they have succeeded in reaching a physician but were given poor advice?

We urgently need to investigate the fate of these patients who are performing an uncontrolled natural experiment in home vs hospital care. Physicians tend to assume that the problem is that patients are self-diagnosing and self-treating—to their detriment. But we may find some surprises, both in terms of why patients are staying home and what is happening to them. We might discover that some patients tried to obtain advice and for a variety of reasons were not directed to the emergency department. And we may learn that the outcomes varied, with some patients dying, others surviving but suffering needlessly, and still others doing just fine. While drawing robust conclusions will be challenging because of a lack of a randomized control population, interviews may enable to learn something about the factors that shaped patient behavior and contributed to outcomes.

Telemedicine has to a large extent replaced person to person visits during the COVID-19 epidemic. As a result, when we blame patients for their failure to go to the hospital, we are implicitly assuming that the flaw is in the patients and not in telemedicine. But such a conclusion is too facile. Maybe part of the responsibility lies with the limitations of telemedicine. Maybe telemedicine is an art that physicians need to master, and maybe patients need to be educated about how best to make use of telemedicine.

Consider this analogy: physicians used to believe that anyone trained to take care of patients in the hospital setting automatically knew how to care for them in the office. Only relatively recently did educators suggest that outpatient medicine requires different knowledge and skills from inpatient medicine. As a result, residency programs today have a much larger and more robust outpatient component than did their predecessors 30 years ago. The recognition that patient engagement in their own medical care positively affects outcomes likewise led to a change in the way that primary care physicians are supposed to practice medicine. 

Teaching both physicians and patients how best to utilize telemedicine will also require that learning more about the barriers to the use of telemedicine in the primary care setting—are people who do not have a computer or smartphone simply not contacting their physician? Do older people who have been unable to learn to make a video call assume that telemedicine is unavailable to them? What about on the physician side? Are all primary care physicians using Zoom or its analogs?

Once we have identified and rectified the barriers to use (no mean feat), we will need to figure out how to optimize use of this technology. Patients may have to be equipped with the means to measure their own blood pressure, temperature, and oxygen saturation to be able to provide physicians with crucial data. Physicians may have to learn to ask patients to check for peripheral edema or other signs of illness, and they may need to rely on third parties (home health aides or family caregivers) to provide additional information.

At the same time, we need to clarify whether sick people are currently underutilizing hospitals (the widespread assumption) or whether they were previously over-using hospitals. While there is ample evidence that hospitals have a great deal to offer patients with conditions such as heart attacks and appendicitis, there is also extensive data suggesting that many medical treatments are over- prescribed.

Over the short run, we need to get out the word that hospitals are open for business and have the capacity and the ability to care for patients with all kinds of acute problems, not just COVID-19 pneumonia. But over the long run, we need to learn how and when to best use both telemedicine and hospital care.

The Doctor is On Line

The Commonwealth Fund just released a study reporting on primary care office visits in the COVID-19 era and it’s disturbing. In-person office visits fell by 60 percent in March and remained down to nearly the same extent in April. While telemedicine substituted for some of these visits, it did not come anywhere near to compensating for the decline. 

Clearly the precipitous fall is disastrous for primary care medicine, which has seen one practice after another furlough physicians or close altogether, but it also bodes ill for patients. While some of those vanishing visits were probably unnecessary or could easily be postponed, there is reasonably good evidence for the efficacy of robust primary care medicine in improving health and increasing longevity. What can we do about this problem—apart from eradicating COVID-19?

            

The popular answer is to increase the use of telemedicine. Telemedicine—principally video calls by patients to physicians that allow both parties to remain home—have had considerable successes: Jefferson Health has made extensive use of the technology to screen for COVID-19, to enhance prevention and, to some extent, to treat common conditions. The use of telemedicine has been rising dramatically, with some analysts reporting a 50 percent increase since March and others predicting a billion remote visits by the end of 2020. Moreover, the regulatory changes introduced by Medicare to facilitate billing for telemedicine visits have had a major beneficial impact. 

But before we get carried away, we should consider who is not currently using the technology and what adaptations will be necessary to maximize its efficacy. I worry that older people in general and the oldest old in particular are not availing themselves of telemedicine, despite having the greatest need. Older patients who are poor, have little education, or are non-English speakers are at the greatest disadvantage of all. But to assume that the only barrier to effective utilization is lack of access strikes me as naïve: surely new skills and a new approach will be necessary, both on the part of physicians and of patients.

First, the barriers to access. My mother is 94. She is intelligent, she has a master’s degree in social work, and she owns a computer and a tablet, both of which she uses to read her email. But video calling is just beyond her. I’ve tried FaceTime and Zoom. I sat with her (in the days when I was able to do so) and coached her. I’ve attempted to walk her through the process while we are on the phone together. No luck. And she is not unique. Her friends have not been able to master this skill either. Generations on Line, an organization which for decades has been trying to improve digital literacy in the elderly, identifies three obstacles: lack of access (not an issue with my mother or most of her friends), lack of skill, and intimidation. She is convinced she cannot learn to use this technology. “I’m not made for this century,” she tells me and she is not alone in her conviction.

Now consider all the older people who do not have a computer or a tablet. Internet use has been steadily rising in those over age 65 and is now about 73 percent—but among those age 80 or older, it’s only 44 percent. And use falls further with lower income and lower levels of education. 

Then think about those who are hearing impaired—you might imagine that the computer's capacity for amplification would be a benefit of the technology, but for many people with hearing loss, the main problem is discrimination, the ability to distinguish different sounds, and that does not disappear with amplification. Next, throw in non-English speakers. Good systems are available for dial-in interpreters, which works well in the office setting, when the patient and the physician are in physical proximity, but is more challenging when a three-way video call is required. Until these barriers are overcome, telemedicine will be limited to telephone calls in those who are neediest and most vulnerable. 

Even if we could wave a magic wand and all older people would have a computer, smartphone, or tablet and broadband access and the ability to use the device to communicate with their physician, we would still need to address the issue of reaching the doctor in a timely fashion. If telemedicine is supposed to replace urgent care as well as evaluation of new, slightly less acute problems along with chronic disease management, then we will need a systematic way to triage visits. 

If all older people could communicate with the physician via the internet promptly and effectively, there would remain the question of the substance of that interaction. Medical students are taught that a good clinical history results in (presumably correct) diagnosis 80 percent of the time. But a more sophisticated analysis suggests that how likely the history is to prove adequate depends on the prior probability of the condition—that is, if a patient is extremely likely to have pneumonia, then a physical examination or chest x-ray has relatively little to add to the history, but if the chance of pneumonia is small, then these other modalities can add significantly. For telemedicine to be effective, we will need to compensate for the lack of a physical exam and lab tests.

Video adds an important dimension to the visit—physicians can learn a great deal, for example, from observing if the patient is struggling to breathe or has blue-tinged lips. But even in dermatology, physicians rely on touch as well as vision to evaluate a rash. To maximize the effectiveness of telemedicine, patients will need to be able to provide their physicians with critical data. They will have to have a thermometer at home to report their temperature. They should have an electronic home sphygmomanometer to measure blood pressure and, ideally, a pulse oximeter to measure the amount of oxygen in their blood. They should know how to check their pulse (though typically home blood pressure cuffs will do this) and respiratory rate. Obtaining the necessary equipment and learning to use it should be feasible, but it will take time and effort.

Lastly, physicians will need to tailor their approach to a visit to accommodate the strengths and weaknesses of the technological medium on which it is based. A video visit is not identical to an office visit, which in turn is not the same as hospital care. Just as physicians discovered that they could not simply extrapolate from inpatient medicine to the outpatient setting but rather had to learn different strategies for caring for ambulatory patients, similarly they will need to adapt to the brave new world of telemedicine. 

Over the long run, the adaptation will be worthwhile. Better home care can lead to fewer hospitalizations. Fewer hospitalizations means better outcomes for frail older patients: they were at risk of adverse consequences of hospitalization (falls, confusion, decline in self-care ability) long before they were at risk of COVID-19. But we have a long way to go.

If We Had 2020 Vision, What Would Nursing Homes Look Like?

Futurism is all the rage: worn down by the relentless drumbeat of Coronavirus hospitalizations and deaths, the mind-numbing unemployment statistics, and the unimaginable reality of parents trying to work while home-schooling their children, we are beginning to think about life-after-the-epidemic. Will movie theaters survive? Restaurants? What about orchestras and theater companies? Will doctors and researchers fly across the country and even across the ocean to attend conferences? Will anyone ever go on a cruise again? The answers to these questions have implications for how we will live our lives, for the environment, for the economy…the list goes on and on. But today’s NY Times speculates about another possible casualty of the COVID-19 outbreak, nursing homes. Battered by an acute rise in costs together with a precipitous decline in revenue as admissions fall, and shattered by their new reputation as a “petri dish for the worst pandemic in generations,” America’s nursing homes risk going under.

The US currently has roughly 15,400 nursing facilities which house 1.5 million of the oldest, frailest, most vulnerable people in the country. The Centers for Medicare and Medicaid (CMS) calls these facilities skilled nursing facilities; most of the rest of us refer to them as nursing homes. To confuse matters, the majority of these skilled nursing facilities (referred to as SNFs and pronounced “sniffs”) also provide care to another 1.5 million Medicare beneficiaries who are admitted for a short period, typically a few weeks, following an acute hospital stay. They are transferred from the acute hospital for rehabilitation or to complete a course of medical treatment prior to returning home. 

Skilled nursing facilities are paid by Medicare for short-term “post-acute care;” they are paid by Medicaid or privately, by the residents themselves, for long-term residential care. And while the subacute part of the business is profitable—according to the MedPAC (Medicare Payment Advisory Commission) “Report to Congress” just published last month, profit margins are 18 percent—the long-term residential component is not. Profit margins in the residential component are non-existent, with the latest, 2018 figures averaging negative 3 percent. Residential, long-term care SNFS were financially precarious before the COVID-19 epidemic. So, it is not surprising that they are faring especially poorly during the epidemic.

             
While the major toll, as the NY Times has reported, is the 7000 deaths among a total of 36,500 nursing home residents diagnosed with COVID-19, there has been a huge financial hit as well. One non-profit chain in Minnesota reported that the average 72-bed nursing home has been spending an extra $1922 per day on personal protective equipment for staff members and another $1500 per day for extra staff to care for residents who are in isolation or who are substituting for staff who are out sick. At the same time, revenue is down because facilities cannot fill their empty beds. Nursing homes have large fixed costs to cover salaries for staff, mortgage payments, food, and equipment. What they don’t have is much reserve. 

In light of these statistics, what will nursing homes do? What will happen to the 1.5 million Americans, who live in these facilities today? One way to imagine the future is by looking at the past. And it turns out that once before, in the not too distant past, the nursing home industry experienced a great contraction.

A funny thing happened in the late 1970s and early 1980s. Despite decades of growth of the elderly population and dire predictions about imminent shortages of nursing home beds, the demand for nursing homes fell. It fell because the baby boomers read books like “Tender Loving Greed” by Mary Adelaide (1974) and “Why Survive? Growing Old in America” by Robert Butler (1975) and concluded they didn’t ever want to go into a nursing home. Not only that, but they didn’t want to see their parents enter a nursing home. In response to the growing demand to stay at home and “age in place,” Medicare expanded its home health benefits: federal legislation in 1980 (the Omnibus Budget Reconciliation Act, known as OBRA 1980) relaxed prevailing restrictions on the ability of Medicare patients to receive nursing, physical therapy, occupational therapy, and other services in their homes. 

Then, in the mid-1980s, a new kid arrived on the block. Touted as promoting dignity and fostering independence, the new institution, which came to be called assisted living, was supposed to keep older people out of nursing homes by offering them the help they needed in the privacy of their own apartment. Between 1991 and 1999, the number of such facilities increased by 49 percent. Between 1998 and 2003, the number increased another 48 percent. Fortune Magazine reported that assisted living was a leading growth industry and that Wall Street investors were falling all over each other to get a piece of the action.

As assisted living and home care grew in popularity, the demand for nursing home care fell, relative to the population. That is, the absolute number of nursing home beds continued to increase, reflecting the growth of the older population in general and of the population over 80 in particular. But by 1980, the number of nursing home beds per person over 65 had begun to fall. A study published in 1985 projected the elderly nursing home population would rise from 1.2 million in 1980 to 1.9 million in 1995 and to 2.8 million in 2020. But here it is 2020 and the number of older people in nursing homes is back down to 1.2 million—the same level as 35 years ago.

Did nursing homes close in response to the fall in demand in the 1980s and 1990s? Some did. But many simply retooled. At just about the same time that assisted living began replacing nursing home care for many older individuals, Medicare made a dramatic change in the way hospital care was paid for, a change that would have an equally dramatic impact on nursing homes. What happened is that Congress passed legislation requiring that Medicare bill for hospital care using prospective payment. Accordingly, Medicare introduced the concept of “diagnosis related groups” in 1983, essentially paying a flat fee to hospitals for a given medical problem, say a heart attack or a broken hip, rather than reimbursing hospitals on a per diem basis. 

The implications of this payment model were immediately apparent to hospitals: since the rates assumed an average length of stay for a given diagnosis, any hospital that discharged patients sooner than the average made a profit and any hospital that discharged patients later than average sustained a loss. The incentive to discharge patients “quicker and sicker” was clear. How to do this with older patients, many of whom were weak and debilitated after their acute problem had been addressed, was less clear. 

Enter the skilled nursing facility, aka the nursing home. A little used proviso in the original 1965 Medicare legislation provided for “post-hospital extended care” in a “qualified facility having an arrangement with a hospital for the timely transfer of patients.” When acute care hospitals looked around for a place to which they could send patients (usually older patients) who were well enough to leave the hospital but not well enough to go home, they seized on this clause. Suddenly they saw nursing homes in a new light. Here were medical facilities that provided round the clock nursing care, room and board, and were accustomed to caring for older people. And those nursing homes had empty beds. 

Not only did nursing homes have empty beds but, as they soon learned, they would be reimbursed much more generously by Medicare if they used the beds for “rehabilitative” or “post-acute care” than they would be by Medicaid if they used them for long term care. On average, Medicare today pays $503 per patient per day for SNF care whereas, on average, Medicaid pays $206 per person per day for residential care.  As a result, use of the short-term skilled nursing benefit soared, going from minimal utilization in the 1980s to 2.2 million admissions in 2018, at a cost to Medicare of $28.5 billion. Not surprisingly, almost all skilled nursing facilities now accept short-term patients. A few take short-term patients only. 

So, what can this slice of history teach us about the predicament of nursing homes today? First, odds are that some nursing homes will close. Many of those that close will already have been operating at less than 100 percent capacity before the COVID-19 epidemic. Some will be temporarily bailed out by the large corporations of which they are a part, health care conglomerates that have other revenue streams. But the for-profit owners—and 70 percent of nursing homes are for-profit—will not want to borrow from Peter to pay Paul very long. They will seek to unload the failing parts of their empire as soon as possible. 

Other nursing homes will probably remake themselves. Just as their predecessors moved into the post-acute business from the strictly residential, long-term care business, today’s nursing homes may decide that the money is in the health care sector and not the residential sector. They might build on their “subacute” units—the parts of the skilled nursing facility that provide short-term care are typically physically separate from the remainder of the institution, expanding them and developing new capabilities. It would be a short leap to becoming a low-tech hospital, equipped to care for simple problems that are nonetheless too complex for patients to manage at home, such as relatively mild cases of pneumonia or kidney infections. Just as community hospitals provide some but not all of the services offered by large, tertiary care hospitals and transfer patients from one site to another if additional technologies are required, so too could skilled nursing facilities provide some but not all of the services offered by community hospitals. These new health care entities could be branded “infirmaries” or perhaps even “geriatric hospitals.” 

Acute care hospitals will in all likelihood be happy to see frail, elderly patients admitted to such facilities. They were desperate for an alternative site of care during the COVID-19 outbreak, either to house COVID-19 patients who did not require an ICU or to house hospitalized patients who had problems other than COVID-19. In the pre-COVID-19 era, they lost money on such patients because they often developed complications—falls, adverse drug reactions, acute confusion—that prolonged their hospital stay. 

What about the patients themselves? Where will they go if their nursing home goes bankrupt? After the dismal performance of the country’s nursing homes during the COVID-19 outbreak, some of which was preventable and some of which may well not have been, nursing home residents and their families will be very interested in moving to a different site of care. This will be challenging since today’s nursing home population is tremendously needy.

According to the most recent data, 41 percent of nursing home residents are dependent in four very basic daily activities such as bathing, dressing, or feeding themselves. Another 22 percent are dependent in five or more basic daily activities. In addition, cognitive impairment is widespread in nursing homes, with 24 percent of residents diagnosed with moderate cognitive impairment and 37 percent with severe cognitive impairment—where “severe” means profound limitations in communication and mobility and total dependence on others for personal care. Nonetheless, some nursing home residents will move to assisted living complexes. These facilities, which over time have come to serve an increasingly impaired population, will need to adapt to a still needier clientele. 

Other nursing home residents will move to the surviving conventional nursing homes, where they and their relatives will apply pressure to develop models of care that are fiscally sustainable and, at the same time, focus on supporting those capabilities that remain as well as compensating for those that have been lost. 

Change is often difficult and transitional periods are often marred by missteps. But if we learn from past mistakes and if we focus on what’s best for the oldest and the frailest among us, the almost inevitable shake up in the nursing home industry just may prove to be a good thing.

Venting About Ventilators

Yesterday, the New York Times published a short article I wrote about what family caregivers can do to try to keep vulnerable older family members safe during the coronavirus epidemic. We as individuals and as a society should do our utmost to keep everyone healthy; my article suggests a few strategies to help those older people who live in the community but need help with personal care or other basic daily functions. 

In many cases, our strategies will succeed, but we have to be realistic and think about the possibility that, despite our best efforts, some older adults—those in their 70s, 80s, or 90s—will get sick. A minority will get so sick that physicians will propose transferring them to the intensive care unit (ICU); most of those brought to the intensive care unit will be breathing so poorly that doctors will advise a ventilator, or breathing machine. 

The popular press makes it sound as though with ICU treatment in general and a ventilator in particular, older patients infected with Covid-19 will live and without this form of treatment, they will die. The reality may be quite different. A report of the experience of nine Seattle-area hospitals just published in the New England Journal of Medicine sheds some light on the question.

The authors report on 24 patients with Covid-19 who were sick enough to be admitted to the ICU. Five of them were over age 80 and five were between 70 and 80. This is a very small sample, but the paper is one of the few published reports that included detailed information about each patient. The outcomes were sobering.

In this group of 10 very sick older Covid-19 patients, 8 died, for a mortality rate of 80 percent. By comparison, among the 14 very sick Covid-19 patients under age 70, 5 died, or 36 percent. A subset of the 24 extremely ill patients received mechanical ventilation—a tube was inserted into their lungs that was connected to a machine that breathed for them. Among the 7 patients over 70 who were both in the ICU and intubated, 6 died, or 86 percent, compared to 4 out of the 11 intubated patients under age 70 (36 percent). The sole case of an older patient with Covid-19 who was intubated and lived was notable for the complete absence of underlying chronic conditions (comorbid conditions, as defined by the study, include asthma, chronic obstructive pulmonary disease, obstructive sleep apnea, infection with human immunodeficiency virus, immunosuppression, diabetes mellitus, chronic kidney disease, and ischemic or hemorrhagic stroke).

An earlier study from China found that among 52 patients admitted to the ICU with Covid-19, the survival rate for people over 70 was 10 percent compared to 45 percent among those under 70.  

Data from the National Health Service in England reporting on the British experience through March 27 found that of 157 patients admitted to an intensive care unit with Covid-19, 73 percent of those aged 70 or older died compared to 35 percent among those under 70. 

In summary, in these three reports, survival rates were low for older patients admitted to the ICU, particularly for anyone who was put on a ventilator. That doesn’t mean it never happens. But it strongly suggests that if you are over 70 and if, despite all the best efforts at prevention, you do get the virus, and if you are one of the minority who become extremely ill with the infection, the outlook is poor. 

Many though by no means all people, if they know the end is likely to be near, do not want aggressive medical treatment that offers little or no benefit. This goes for people with advanced cancer, severe heart disease, or any of a variety of other conditions that are usually fatal. They’d rather receive medications such as morphine to ease their shortness of breath and medications such as lorazepam to ease their anxiety than to undergo extremely uncomfortable treatment that has only a small chance of prolonging their lives. Severe Covid-19 is another condition for the oldest Americans to consider adding to the list.

We all hope we won’t get the virus and that if we do get it, we’ll have a mild case. We hope that if we have a more serious case, we won’t be sick enough for doctors to propose transferring us to the ICU and using a ventilator. But if you are over 70 and you become severely ill with Covid-19, you will be facing a situation that may be as dire as advanced cancer. To be sure, if you survive the coronavirus infection, you might have a good quality of life (though this, too, is uncertain as we know little about life-after-the-virus for those who have been in an ICU) and you might live for some time. If you benefit from treatment of advanced cancer, on the other hand, the benefit may be short-lived. But in both cases, you have a choice. You can decide that you want any and all treatments, however burdensome and however likely or unlikely they are to improve your condition. Or you can opt for a more palliative approach. You don’t have to accept treatment that you regard as excessively burdensome. You don’t have to spend what might be—but might not be—your last days in an ICU with a machine breathing for you, unable to eat or speak. You can choose instead to be treated with intravenous fluids, oxygen, assorted medications, and other forms of supportive care but to decline admission to an ICU and intubation. Your general state of health (before coming down with a coronavirus infection) and your personal preferences should guide your decision.

Most people with Covid-19 infections do not become so desperately ill that they are admitted to an ICU and intubated. Specifying in advance whether you would want this kind of treatment by signing a simple advance directive and discussing your wishes with your health care proxy is a type of insurance policy. Like flood insurance and fire insurance, you hope you will never need to make use of it. But it’s good to have it, just in case.