Medicare Part E?

Congress first created the Medicare hospice benefit in 1982. During the first full year after the law went into effect, only 200 Medicare patients enrolled in hospice, accounting for less than one-half percent of the deaths that year. By 1986, seven percent of Medicare patients who died were enrolled in hospice at the time of death; in 1998, it was 19 percent and in 2013 it reached 47 percent. A new report from the National Hospice and Palliative Care Organization shows this percentage has remained fairly stable: in 2017, it was 48 percent.

The length of time that Medicare patients are actually enrolled in hospice remains woefully short, particularly for some diagnoses: while the average length of stay is 71 days, reflected a few very long stay patients, the median length of stay is only 24 days. In fact, fully 28 percent of individuals got between one and seven days of care, far less than most clinicians regard as optimal. Patients enrolled in hospice because of a cancer diagnosis tended to have the shortest lengths of stay in the program. Nonetheless, the historical shift towards hospice as a reputable and popular approach to end of life care demonstrates that we can introduce a new Medicare benefit package and expect it to catch on. The same happened with Medicare Part D, the drug benefit (though this was an add-on rather than a substitution), with enrollment going from 52 percent in 2006 to 71 percent in 2016. Medicare Part C, the partially privatized HMO-style benefit now known as Medicare Advantage, has also taken off: in 2003, only 13 percent of Medicare beneficiaries opted for such a plan but by 2017, 33 percent did. 

The time is ripe for adding a new alternative benefit package to Medicare’s offering: whether we call it Medicaring, the name preferred by Joanne Lynn, Director of the Elder Care and Advanced Illness division of the Altarum Institute,

or Intermediate Care, my term, or something else, it would provide enhanced home care services for frail elders and others with advanced illness in exchange for limitations on access to intensive, expensive, burdensome, and seldom beneficial treatments such as bone marrow transplantation or open-heart surgery. 

Americans tend to dislike or at least be very skeptical about any kind of limits to care. But often the problem is that we focus on what people cannot have rather than emphasizing what they can have—and what they often need and want. In fact, I think one reason that patients only enroll in hospice very late in the course of their illness is that hospice is presented as the withdrawal of care, the discontinuation of care, rather than as the substitution of one approach to care for another. Many patients may be unwilling to forgo treatment altogether, which is how hospice is frequently presented, but are eager to choose a less invasive, less burdensome form of care: infusions of very toxic chemotherapy drugs in the physician’s office every week or two may be rejected if there is an oral medication they can take at home that has far fewer side effects. But if the only alternative is certain death, chemotherapy looks far more attractive.

Important and interesting work has been done on developing and implementing programs to care for people with advanced illness or frailty, such as the Coalition to Transform Advanced Illness Care's 2017 report. The way forward is now to create a Medicare benefit to accommodate this approach.

The Tipping Point

When I wanted to figure out whether it was time to replace our 2004 Toyota Camry, which runs beautifully and is the most comfortable and reliable car we’ve ever owned, I pulled out its repair records and graphed money spent on fixing the car as a function of time. What I was looking for was an inflection point or, as Malcolm Gladwell might call it, a tipping point. I wanted to know whether our annual maintenance expenses for the car had begun to creep up or, more importantly, if the curve had abruptly gotten a lot steeper. I was pleasantly surprised to discover that after the first couple of years, when our only costs were for oil changes, the annual costs had remained rock stable. The car has 125,000 miles on it; at this rate, it might make it to 200,000.

Now I can’t be certain that this calculation has any prognostic significance. It’s possible that there could be one very expensive year, a year when some particularly costly part needs to be replaced, but that large outlay is a blip on the curve; after that one year, annual expenditures might go back to normal. Drawing conclusions after looking at the high expenditure year and not waiting to see what happened the next year could lead to the erroneous conclusion that the vehicle had begun a period of relentless decline. And I have no evidence that even if my system makes sense when applied to cars, it would also work for people, but it set me to wondering.

The problem with people, and the reason that I’m hoping the car analogy might prove helpful, is that sometimes it’s hard to know when to stop “doing everything,” as patients often put it. Occasionally, it’s easy: there are patients, for example, with widely metastatic cancer who are clearly and unequivocally dying. They may not want to accept that the end is near, but it’s obvious to any good oncologist or palliative care physician. It is often obvious to families and even to the patient as well. There are patients with very advanced heart failure whose hearts can barely pump any blood and who are far too sick to withstand highly invasive treatment such as a heart transplant; they also may not want to acknowledge that they are dying. Their situation may be compounded if their doctors also don’t want to admit that they're dying, but there is compelling objective evidence that they are at death’s door.

Much of the discussion about death and dying these days centers on patients like these. And yes, it can be difficult emotionally to let go, but the truth is that these aren’t the hard cases. The hard cases are people who aren’t, as Katy Butler put it in her book about a better path to death, knocking on heaven’s door. The challenge is to figure out when to pull back before you reach that point and not necessarily to pull out all the stops, to go from maximal medical care to an exclusive focus on comfort, but rather to something in between. I have talked a great deal about this kind of intermediate care, particularly for frail older people. But how do you know when it’s time to switch gears—not necessarily from fourth gear to first gear, but perhaps to second or third?

Palliative care physicians have to deal with this question all the time. We have to figure out “eligibility criteria” for palliative care consultations. A recent state initiative in Massachusetts mandates that “suitable patients” be told about the availability of palliative care for people in their condition. Some useful guidelines have been developed: patients with heart failure who have had two or more hospitalizations or emergency room visits in the past year are good candidates; patients with dementia who have lost a great deal of weight or have had recurrent infections would benefit. Several interesting studies have identified “markers” for the beginning of frailty: a serious fall, for example, or admission to a nursing home. But the reality is that we don’t have a great way of identifying patients who are likely to be entering the final phase of their lives. It would be very useful to figure out who such patients are by using “administrative databases,” that is, insurance company records of doctor visits or hospitalization or lab tests. Hence my interest in inflection points.

I noticed recently that someone in my family had an abrupt increase in the monthly number of doctor visits, lab tests, and procedures. Instead of seeing her primary care doctor once or twice a year, she was going every month or two. Instead of very rare visits to sub-specialists—a trip to the ear doctor once a year to have wax removed, a visit to the dermatologist once a year for a skin exam, and an annual appointment with the eye doctor—she was seeing these specialists more frequently, along with other doctors: a surgeon, a rheumatologist, a gastroenterologist. I couldn’t help wondering whether she had passed a tipping point.

We have to tread carefully here. After a single, isolated acute illness, a patient might have a transient increase in “health care utilization,” as the economists put it. When mapping trajectories in the last year or two of life, we know that some patients don’t follow a steady path but instead become transiently frail—say after a small stroke or a hip fracture—only to return to their previous level of functioning after rehab.

So we have to plot out doctor visits and lab tests over a long enough period of time to be able to distinguish between a blip and an inflection point. If we insist on too long a time frame, then the approach ceases to be useful—by the time we know for sure that there was an inflection point, the person could be dead. 

I never used to like the people-as-machine metaphor—patients in many ways aren’t like machines whose parts wear down. But maybe, just maybe, old people are a bit more like old cars than I thought.

The Benefit of Medicare and the Medicare Benefit

When Congress first introduced a hospice benefit into the Medicare program in 1982, it did so out of the recognition that patients who are very near the end of life need special treatment. Conventional medical care doesn’t work well for them; another type of care, focused intensively on symptom management and delivered principally in the home, tends to be far more beneficial. The problem—aside from the psychological issue of both patients' and doctors’ reluctance to acknowledge the imminence of the end of life—was how to pay for this kind of labor-intensive care. The legislation, introduced on a trial basis at first and then on a permanent basis in 1986, instituted an approach to payment that offered patients a trade: either Medicare paid for what was assumed to be life-prolonging care (for example, hospitalization and chemotherapy) or Medicare paid for what was assumed to be exclusively comfort-oriented care (for example, home nursing and medications such as morphine). The nice clean boundaries between life-prolongation and comfort-maximization turned out to be rather fuzzy: sometimes palliative care prolongs life more than does aggressive, high-tech medicine and sometimes the treatments that are thought of as life-prolonging, such as radiation therapy, are the best way to maximize comfort. But leaving aside the issue of whether we should decide what counts as life-prolonging on a case-by-case basis rather than by category (ie viewing all chemotherapy as life-prolonging), the fundamental principle remains—health insurance benefit packages necessarily involve both inclusions and exclusions.

The trouble with the structure of Medicare is that it provides well for the extremes, for people who are very vigorous or who are imminently dying, but it doesn’t provide well for those who are in between. To be fair, Medicare has evolved over the past ten years and pays far more attention than previously to people with chronic diseases and increasingly greater attention to people with multiple chronic diseases. It has introduced disease management programs, typically involving nurses who help patients adjust their own medications for diseases such as diabetes or heart failure. But patients who are frail or who have moderate to severe dementia benefit from many of the same intensive home care services as dying patients. They also often want to avail themselves of many of the same kinds of high-tech care as robust older patients. Medicare rightly balks at the prospect of paying for everything—it’s just too expensive. So what people with frailty and advancing dementia need is their own special Medicare benefit that is midway between conventional Medicare and the hospice benefit. They need what I call intermediate care; the way to pay for intermediate care is through a new benefit tier.

The comprehensive package—sandwiched between the intensive package and the palliative package—would be modeled on the Program of All-Inclusive Care for Elders (PACE), a very successful program in which only a very small number of patients have enrolled, providing integrated, multidisciplinary care outside the hospital or nursing home. Unlike PACE, it would not focus on the adult day health center (many older people don’t want to go to “daycare,” where lots of the PACE services are delivered) and it would not require that patients change physicians (an impediment to joining PACE as currently conceived). In exchange for the enhanced home services, the intermediate care benefit package would exclude a variety of high tech, high expense medical care that is seldom useful for frail or very demented patients. It would not cover ICU care. It would not cover surgery for devices such as the Left Ventricular Assist Device, a kind of partial artificial heart. It would exclude dialysis, which doesn’t prolong life in frail elders. What the intermediate care benefit would provide is a coordinated, integrated approach to care, with plans in place for what to do in the most likely scenarios for a given patient—what to do when the patient with advanced heart failure develops pulmonary edema, when the patient with advanced emphysema develops pneumonia, or when the patient with moderately severe dementia develops a fever. These plans would involve intensive home treatment or transfer to a skilled nursing facility, but not the current approach of emergency room—hospital—rehab—home. It would look similar to another variant of Medicare than has been proposed, called MediCaring. 

Medicare is a great program but it needs substantial modification to truly benefit all those it is intended to serve: the robust, the frail and the demented, and the dying. Just as we don’t expect one antibiotic to treat all infections or a single chemotherapeutic agent to treat all types of cancer, we cannot expect one benefit package to make sense for all older patients. Offering three distinct packages, an intensive package, a comprehensive package, and a palliative package, as I argued in my book The Denial of Aging, would go a long way to making Medicare work for everyone.

Doing the Right Thing

For the third time in a 50 years, it’s hip to talk about dying (except, perhaps, if you are in the middle of dying yourself). Interest seems to come in waves. First there was Elisabeth Kubler-Ross, whose book On Death and Dying, published in 1969, opened the curtains on life’s final act. Then came Sherwin Nuland in 1994, with How We Die: Reflections on Life’s Final Chapter. And now we have Atul Gawande with Being Mortal: What Matters in the End, along with several other important books, ranging from the Institute of Medicine report, Dying in America and, most recently, Angelo Volandes’ The Conversation, with its overstated subtitle, A Revolutionary Plan for End-of-Life Care. It’s good that we are talking about care near the end of life, and maybe this time the interest won’t sputter out before we actually do something to assure that all patients die with a minimum of pain and distress, in their homes if that’s where they want to be, and without unwanted medical technology. But what of the months and sometimes years before death, when so many people are neither robust nor dying, but somewhere in between?

Patients and doctors alike seem to want a black and white world, where you either focus exclusively on prolonging life or you focus exclusively on being comfortable. It’s either the ICU or hospice. Even Susan Jacoby, in her trenchant book Never Say Die, advocates that doctors “do everything possible only if there is a realistic hope that I can emerge as a functioning, mostly competent human being. Then stop and let me die.” She moves the bar demarcating intensive medicine and comfort care—she thinks comfort care should begin before dying starts rather than after it has begun—but her world is still black and white. What I am interested in, by contrast, and why I write about people who are frail and people in the early and middle stages of dementia, is the gray zone.

In the gray zone, people are not dying in any conventional sense. They are still living and may continue to live for some time—in the case of people with Alzheimer’s disease, perhaps even 5 years—but they have begun the final phase of their lives. They are beginning their final descent, as airline pilots so helpfully tell you a good half hour before you reach your destination, but won’t actually land for some time, and even then it will be a while before you arrive at the gate and can take off your seatbelt.

Who is in the gray zone? Principally people with either physical frailty or cognitive frailty (dementia). People who have a serious, ultimately fatal illness such as congestive heart failure or kidney failure or a progressive neurologic disease such as Parkinson’s or amyotrophic lateral sclerosis (Lou Gehrig’s disease). People who have a bad disease that will inevitably get worse and who have embarked on the spiral of relentless decline that will culminate in their death.

What approach to medical care makes sense for people in the gray zone? Not everybody wants the same thing, but it is my belief based on clinical experience, scientific evidence, and common sense that most people who are physically or cognitively frail favor what I call intermediate care. This is care that is focused on maintaining whatever functions the person still has—activities such as walking, talking, seeing, hearing, and thinking. Preserving functioning is the primary goal of care. It may not be the only goal of care: people in the gray zone will often wish to live longer, but only if the treatments intended to achieve this end do not further impair their functioning. People in the gray zone usually want to be comfortable (doesn’t everyone?), but they are willing to undergo some discomfort in exchange for the strong possibility of holding on to the functions they have.

What does intermediate care look like? We tend to talk more about what it excludes than what it includes. It excludes attempted CPR—because people who are frail almost never survive attempted CPR and if they do, it is likely to be in a state of far poorer functioning than before the cardiac arrest. It excludes treatments such as risky chemotherapy and treatment in the ICU for the same reason: these medical therapies are seldom effective in prolonging life in patients who are frail and if they succeed, the price is usually a decline in function. What intermediate care includes is treatments that are intended to maintain function, things such as cataract surgery or hip fracture repair. It includes life-prolonging treatments such as antibiotics for pneumonia or transfusions for gastrointestinal bleeding if they can be accomplished with only a small risk of deterioration in the person’s ability to function. That means it may well include hospital treatment, up to a point. The distinguishing features of intermediate care are both the benefits it is likely to confer (better functioning, possibly longer life) and the burdens it is likely to avoid (decline in precisely those areas that the patient values most, whether mobility or cognition or some other domain of daily functioning). Intermediate care can be high tech or low tech: the issue is not the complexity or the cost of the treatment, but its effects.

We need to let patients know they have entered the gray zone—if they mistakenly believe they will get better or they fail to realize they are dying, they will be unable to make wise choices about the kind of medical care that is right for them. We need to tell patients that there is such a thing as intermediate care and help them understand what it means in practice.