February 25, 2015

Going, Going, Gone!

Per capita spending on older people goes up with age. Does it ever stop? See post this weekend.

February 22, 2015

Goals, Goals, and then What?

Last week’s New England Journal of Medicine asked readers to weigh in on who should initiate a conversation about goals of care with the patient described in a clinical vignette, a 59 year old woman with very advanced breast cancer. Should it be the primary care physician? The oncologist?  Or should it be a palliative care specialist? Three short pieces make the case for each perspective. But the reality is that it’s not who initiates the conversation about the goals of care that’s important; it’s what’s done with the information.

The primary care doctor might be the best person to start talking to the patient about “what is most important to her” if that physician has a longstanding relationship with her. The oncologist might be the best person to “elicit... values and goals” if he or she has the requisite communication skills. The palliative care physician might be the optimal choice if there are other issues to address, such as symptoms or social supports. Ideally, any of the three candidates could discuss with the patient what matters to her, given the realities of her disease and its likely trajectory.

What the three respondents leave out is the next crucial step: going from goals to decisions about treatment. The primary care advocate says that the physician should help the patient “match future care and treatment to her goals” but is principally concerned with recommending use of the POLST form (physician order for life sustaining treatment) as a means of documenting her wishes. She doesn't explain how wishes, expressed in terms of goals, are to be translated into actual medical orders. The palliative care advocate argues that the patient needs “help understanding what to expect and how to manage it” along with symptom control and emotional support, and is chiefly concerned with touting the importance of palliative care as a specialty. She says nothing about who or how anyone will infer from goals what the treatment should involve. The oncologist argues that the physician should provide information about prognosis and elicit the patient’s values and is mainly interested in assuring that the specialist physician not abdicate this responsibility. He alludes to the physician’s “judgment and advice,” but then states that the doctor's role is to to help the patient "understand her prognosis and options, articulate her values, and match her medical decisions to those values." Evidently the patient is supposed to make the leap from goals to treatment, though with the physician's advice.

What should the process of moving from goals to a plan of action look like? Figuring out what treatment plan is most consistent with a patient’s goals of care requires technical understanding of the treatment and its alternatives. Suppose the patient decides that focusing on comfort is most important to her; it is the physician (most plausibly the oncologist, in this scenario) who is in the best position to explain whether oral opioids, an infusion pump, or radiation therapy are most conducive to achieving that goal. Suppose the patient chooses to focus on life-prolongation. It is the physician who is best able to determine which, if any of the available chemotherapeutic regiments, is likely to prolong life. Or suppose the patient concludes that remaining as mobile, independent, and clear-headed as possible is her primary concern. It is the physician who is able to say, based on knowledge of the benefits as well as the burdens of each alternative, how best to accomplish this goal.

Shared decision-making, the gold standard of care today, involves the active participation of both clinicians and patients. It is a dynamic process that requires give and take by both parties. It demands skill, rests on trust, and takes time. But it’s important to realize that the physician and the patient bring different kinds of knowledge and expertise to the dialogue. A division of labor between patients and doctors is perfectly consistent with respect for both parties. Just as patients have a unique understanding of what matters to them, physicians have a special understanding of what it is like to go through a course of treatment. Physicians can help patients articulate their goals but then it is up to physicians to conclude what those goals imply for treatment. Patients may reject the conclusions drawn by physicians—usually because they realize, when faced with the implication of their stated goals, that their description of what was important to them was not quite accurate. 

The translation of goals of care into actual therapy should be the physician’s prerogative--with the patient maintaining veto power. What matters isn’t so much who starts the ball rolling as how to shepherd it into the end zone.

February 15, 2015

Is the ICU Good for Your Health?

Your goals of care determine what kind of medical treatment makes sense for you—or they should. If you want any treatment, however painful or debilitating, as long as it has a reasonable prospect of prolonging your life, then you would accept high risk surgery or attempted CPR. If you want treatment that offers a good possibility of making your daily life better by helping you with every day activities such as seeing or walking or hearing, then you’d be all for cataract surgery or a hip replacement or a hearing aid. And if you want treatment provided that it makes you more comfortable, by helping you breathe more easily or diminishing nausea or lessening pain, then you’d opt for oxygen, anti-emetics, or opioid medications, depending on your symptoms. The challenge for patients and doctors has been figuring out what kinds of medical treatment don’t make sense, given your goals, because they are unlikely to produce the effect you want—and may even produce the opposite effect. A new article in JAMA Internal Medicine helps clarify when one particular treatment, ICU care, is apt to achieve various discrete goals of medical care.

The authors of this important new study wanted to know what happens to older people after an ICU stay. They wanted to know not only whether they would survive, but also what their lives would be like in the months following ICU treatment. They also wanted to know how the person’s level of functioning before the hospitalization would affect what happened after the hospitalization.

This remarkable study involved prospectively following individuals over the age of 70 who, at the time of enrollment, were non-disabled in four basic activities of daily living. A total of 754 people were followed with home assessments at baseline and every year and a half from 1998 through 2012. When patients or their surrogates reported a hospitalization, the details of that stay were gleaned from medical record review and from claims data. 

Of the 754 patients followed, 291 (or just under 40%) at some point were admitted to an ICU, which in itself is impressive. For the 241 who lived to be discharged (17% died in the hospital), the researchers found 3 distinct trajectories. Fully half (51.1%) experienced severe disability over the year after discharge; slightly over one-quarter (28.1%) had mild to moderate disability; and just over one-fifth (20.8%) had minimal disability. Most of the patients (except the 7% who died during the first 30 days after discharge) got slightly better in the first three months after leaving the hospital—that is, they experienced fewer disabilities than at the time of discharge—but in all 3 groups, the level of disability stabilized after 3 months rather than continuing to improve.

How well people did after an ICU stay was closely related to how well they were functioning before the hospitalization. Not surprisingly, those with severe disability before the acute illness (77 people) had severe disability afterwards as well, and one-third of them died. Among those who had mild to moderate disability before the hospitalization (128 people) , 32% had roughly the same level of disability afterwards, 40% had severe disability, and 26% died. Finally, among those who had only minimal disability before the ICU stay (86 people), half still had minimal disability afterwards, about one quarter had mild to moderate disability, and the remaining quarter were evenly distributed between those who died and those who had developed severe disability.

How does this study help align treatment with the patient’s goals? For older people whose primary goal is comfort, ICU care is not likely to help. Patients in the ICU were placed on ventilators (30%) and underwent all the other invasive treatments commonly associate with the ICU. For older individuals whose primary goal is maximizing function, ICU care is likely to lead to a deterioration of function, unless the patient was already suffering from severe disability (though even these individuals tended to have a larger number of disabilities after the hospitalization than before). Decline in function is particularly striking for those who started out with mild to moderate disability. And for older patients whose primary goal is life-prolongation, ICU care made most sense for those whose baseline status involved minimal disability—81% of such patients survived a year, compared to 56% of those with mild to moderate disability at baseline and only 33% of those with underlying severe disability.

The ICU is a remarkable institution. It represents the pinnacle of American high-tech care. But it comes at a price, even when it succeeds in prolonging life. That price is greater disability, which may or may not be acceptable to older patients. It all depends on your goals of care. 

February 11, 2015

The Road to Ruin

If you are old and frail, an ICU stay may be hazardous to your health--coming Sunday.

February 08, 2015

Medicare at Fifty

The Medicare program will turn 50 this year, as a short piece in the New England Journal of Medicine reminds us. Well, not exactly—Lyndon Johnson signed the legislation into law in July, 1965, but the program didn’t actually go into effect until 1966. So I guess we have two years for the festivities. There’s a lot to celebrate—but also a lot of work to do. Maybe just as we customarily make New Year’s resolutions every January, we need to make new semicentennial resolutions for the Medicare program.

What has Medicare done right and what has it done wrong? And why should it matter so much to people over 65? How about to everyone else?

To start with the question of mattering, Medicare matters to older people because 98% of people 65 and older have health insurance coverage, thanks to Medicare. In 1962, before the institution of Medicare, only 48% of older people had medical coverage, and many of them had policies that were inadequate for their needs. It’s also important to realize that in addition to the 43.5 million older people enrolled in Medicare, 8.8 million younger individuals who are disabled are also covered by Medicare. 

But Medicare matters to everyone in the US, not just those who are elderly or disabled. It matters because Medicare spending constituted 17% of federal revenues in 2014 and with the projected growth of both the older population and the program, this is expected to reach 27% by 2050. Without substantive payment reform or changes in coverage, Medicare spending by the federal government will approach 40% of its revenues by the end of the century. This means less money for everything else that the federal government spends money on, ranging from infrastructure to education to defense.

Medicare also matters to everyone because it is a trailblazer: most private insurers follow Medicare’s lead in all sorts of critically important areas. For example, when Medicare started paying hospitals based on diagnosis-related groups in 1983, when it went from a retrospective system that essentially meant paying hospitals whatever they charged to a prospective system that paid hospitals a standard amount for a given condition, private insurance companies adopted the same strategy. When Medicare modified the way it paid physicians by going with a relative value scale, private payers followed its lead. Today, Medicare is increasingly paying for performance rather than just for services; so, too, are many private insurers. Medicare is increasingly interested in improving the quality of care, not just assuring access; the private insurers are adopting the same model.


So if Medicare is so important, what does it do well and what does it do poorly? Medicare gets a lot right, it also gets some important things wrong. Medicare fails to recognize that certain technologies such as glasses and hearing aids are as essential to optimal functioning as is the durable medical equipment (walkers, wheelchairs, commodes) that Medicare currently covers. Because Medicare covers certain things such as short term rehabilitative care in a Skilled Nursing Facility, while Medicaid covers long term residential care in a Skilled Nursing Facility, the two programs have an incentive to cost shift instead of providing seamless, integrated care.  The Medicare program is further fragmented by having separate benefits for hospital care, physician care, and medications (Medicare Part A, Medicare Part B, and Medicare Part D)—except if patients enroll in a Medicare Advantage plan (Medicare Part C), which combines all three.

Fixing what Medicare gets wrong is obviously important to the program’s beneficiaries. But it's also important to everyone else with health insurance (which, thanks to the Affordable Care Act, is an increasingly large share of the population.) There will be growing emphasis on reforming Medicare to control costs. Looked at in terms of GDP rather than federal revenues, spending on Medicare has gone from 0.5% of GDP shortly after it was introduced in 1966 to 3.5% in 2012, with projections that it will grow to 4.3% by 2022. Although the rate of rise has fallen in the last couple of years, variously attributed to the recession and to the Affordable Care Act, total spending will continue to grow in part because of the dramatic rise in the number of people over age 65. The drive to modify Medicare gives us an unprecedented opportunity: to make the program both better and leaner. We can do this, as I suggested in last week's post, by making smart tradeoffs and by introducing a new benefit midway between conventional Medicare and hospice. What better time than Medicare's 50th anniversary to make a new year's resolution--and stick to it.

February 05, 2015

February 01, 2015

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.

January 28, 2015

Paying the Piper

What would a new benefit package for the frail, known as intermediate care, cost? How could we pay for it? See next blog post.

January 25, 2015

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.