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.

Reforming Medicare: Enhancement or Evisceration?

Recent reports indicate that Congress will try to slash Medicare in order to balance the budget—making older people and disabled people shoulder the cost of its enormous tax cuts. The proposed plan, according to the Washington Post, would extract $537 billion dollars from the Medicare program over the next decade. At the same time, the budget passed by Congress and signed into law by the president in February created CHRONIC (Creating High Quality Results and Outcomes Necessary to Improve Chronic Care Act) which, the NY Times suggests, is a hidden jewel buried in the voluminous budget bill. Which is it? Is Medicare headed for enhancement or for evisceration?

Thus far, the cuts are theoretical (it’s not clear that the House Budget Committee will get very far with its recommendations) whereas the reforms are real—or will be when they go into effect in 2020. CHRONIC is to be lauded for accomplishing several important goals. 

First, the act recognizes that good outcomes among people with chronic conditions are contingent on what are not strictly medical services—as well as access to physicians, hospitals, pharmaceuticals, and medical devices. Wheelchair ramps and grab bars, as well as other products that lie outside the traditional definition of “durable medical equipment,” can in the future be paid for by Medicare—at least by Medicare Advantage plans that opt to offer them. This strategy does not go as far as the National Health Service did in the UK with its “personal health budgets” that allowed patients or their representatives to decide in concert with their physicians how to spend their share of the health care pie. The result—and the program, despite some vocal protests, has been so successful that it was recently expanded—is that patients with early dementia can choose, for example, to spend NHS money on creating a garden that will keep them engaged, potentially obviating the need either for medication to control symptoms of agitation or for institutionalization in a nursing home. Nor does the US strategy apply to traditional Medicare: in an effort to make Medicare Advantage plans, which currently have 19 million members, even more attractive (furthering the Republican goal of privatizing Medicare), only MA plans will be allowed to reimburse for these new supportive services. 

Second, CHRONIC permanently authorizes Medicare Special Needs Plans (SNPs) that cater to the highest risk Medicare beneficiaries including those living in institutions. These are special types of Medicare Advantage plans that offer enhanced integration and coordination of care, a critical feature for this complex population. 

Finally, CHRONIC extends its support of non-traditional forms of care, of which the allowance for grab bars was one example, to telemedicine (particularly relevant for homebound patients and in rural communities) and to home care (expanding the Independence at Home Program 50 percent from 10,000 enrollees to 15,000). 

So, what’s not to like? Two cautionary notes. First cautionary note: CHRONIC focuses overwhelmingly on Medicare Advantage plans (which currently cover 32 percent of Medicare beneficiaries), not on traditional Medicare (which covers the other 68 percent). This is no surprise, as the Republican Congress, which is interested in privatizing Medicare, sees shifting to the MA model as a route to achieving this goal. In principle, I don’t have any problem with expanding the number of MA plans (currently there are 3300, according to MedPAC, the Medicare advisory council) as they offer great potential for the coordination of care so essential to frail elders, but it will be essential to maintain the regulatory oversight of CMS if these plans are to be guaranteed to provide quality care. Moreover, we need to begin collecting detailed data on the utilization and outcomes of MA members. Right now, almost all of the voluminous data gathering by the federal government exclusively deals with fee-for-service enrollees so no granular analysis of the performance of MA plans is possible. 

Second cautionary note: while some of the provisions of CHRONIC appear to address programs, in fact the legislation is often grounded in how the programs are to be reimbursed. And the underlying philosophy is that the way forward lies with “value-based” care. I’ve blogged about this before, most recently in my post “V is for Value.” My concern about this approach is that it assumes that better and less costly medical care can be obtained simply through tweaking reimbursement. It’s the triumph of the economists’ view of health care as an industry subject to manipulation like other industries. The trouble with this insistence that VBP is key to all our problems, aside from the fact that so far value-based reimbursement systems such as pay-for-performance have not succeeded, is that it discounts the role of culture, advertising, and popular expectations. It is these factors, and not just payments to physicians, for example, that shape the enthusiasm for technology manifested by patients, corporations, and physicians alike.

CHRONIC is an admirable piece of legislation—for what it includes. What should concern us, however, is what it leaves out.

Pushing Palliative Care

The July issue of Health Affairs, a leading health policy journal, is devoted to “advanced illness and end-of-life care.” While most of the articles focus on people who are dying, or at least who are likely to die in a matter of months, a few shining exceptions endorse a broader view. The center piece of this effort, and arguably of the entire issue, is the call to action by several palliative care luminaries and two senior figures from prominent foundations. This distinguished group of health care professionals put forward an idea at once radical and conventional: a national strategy for palliative care, to be spearheaded by the federal government (based in the Department of Health and Human Services) and grounded in a public-private partnership involving payers, regulators, and foundations.

The idea is radical because it would put palliative care, a field only established in the United States in the 1990s, at the forefront of care for the majority of America’s sickest, neediest, most vulnerable—and most costly—patients. It is conventional because it follows the model of earlier bipartisan initiatives that influenced the health care system, such as the Office of National AIDS policy. And it is conventional because it continues the tradition of specialist care established in the US after World War II, an approach to medicine that is uniquely American—and at the heart of what makes our system expensive, inefficient, and out of touch with the needs of sick patients.

Don’t get me wrong—there is much to like and admire about this proposal. It rests on the assumption that the essence of palliative care, an emphasis on symptom management, advance care planning (or as the authors put it, communication about goals and preferences), and psychosocial support to patients and families, is exactly what people with serious illness and functional impairment need. I agree. It endorses the view that this approach to medical care is best delivered by a team of health care professionals. I agree, although I would add family caregivers to the team. And it assumes that the best way to move forward is to expand palliative care expertise (through research, workforce training, and caregiver education), establish standards of care, and assure access—which will require oversight, regulation, and financial support. I’m not sure this is the only way forward, but it is probably the most expeditious way to proceed and parallels the successful models introduced in New Zealand and Australia. It’s the specialist part of the proposal that makes me uneasy.

The authors define palliative care as a “team-based specialty focusing on improving quality of life and relieving suffering,” though they acknowledge that “primary-  or generalist-level palliative care” is another variant, one that “integrates palliative care elements into the care provided by all clinicians serving the seriously ill.” Implicitly, they hew to the old, and I would argue antiquated, distinction between “curing” and “caring.” Standard medicine, in this view, is about curing; palliative medicine is about caring. But in today’s world, where most, although not all, diseases are chronic, cure is seldom what usual treatment is about. Physicians cannot cure diabetes or congestive heart failure, they cannot cure endstage kidney disease or chronic obstructive pulmonary disease, nor can they cure Alzheimer’s disease or many cancers. There are, to be sure, some diseases that can truly be cured, principally infectious ones, but also some cancers and surgical problems. But for the vast majority of serious conditions that afflict adults today, all treatment is palliative. Modern medicine may prolong life, but above all, it lightens the burden of disease, thereby improving quality of life.

Now, if most of today’s serious illnesses are chronic, and most of contemporary medical treatment is inherently palliative, then why limit treatment to palliative care specialists? Surely all physicians who provide care for conditions such as congestive heart failure or COPD should be palliatricized. Only in particularly challenging cases would palliative care specialists be called in. Just as most cases of high blood pressure and heart failure are treated by internists, not cardiologists, but heart specialists have a role in refractory or tricky cases, just as most cases of depression and anxiety are treated by generalists, not psychiatrists, but mental health clinicians have a role in a subset of specially complicated cases, so too should non-palliative care specialists take the lead in caring for most patients today.

American medicine is at a crossroads. We could expand specialty care further by growing the field of palliative care. This is certainly the approach we have taken since World War II to dealing with burgeoning medical knowledge. It’s part of why American medicine is so much more expensive and inefficient than medicine in other developed nations. It is precisely the reaction against highly specialized care that resulted in the kind of person-centered care that is at the heart of palliative care. It is probably the easier path—easier than trying to educate internists, cardiologists, neurologists, oncologists and all other physicians who provide care to patients with advanced illness. Or we could re-conceptualize much of modern medicine as palliative and get rid of the false dichotomy between curative care and comfort care. The century is still young. Let’s get this right.

Life in the End Zone will be on vacation until August 13.

        

           

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