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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The Worthy and the Unworthy

One of the most illuminating and insightful articles I ever read was written by historian of medicine David Rosner. Entitled “Health Care for the ‘Truly Needy’: Nineteenth Century Origins of the Concept.” I read it when it was first published and I’ve remembered it since—and that was 35 years ago. The nineteenth century concept of the “worthy poor” or “deserving poor,” and its Reaganesque reformulation is sadly reflected in the Republican health care bill revealed today.

Rosner points out that at a time of relative ethnic homogeneity in pre-industrial, pre-Civil War America, the poor were often seen, in the light of Christian teaching, as individuals who would be rewarded with salvation. As an added bonus, the presence of poor people gave the wealthy an opportunity for charity, which would likewise be rewarded. But then, in the second half of the nineteenth century, millions of destitute immigrants arrived on American shores. At the same time, Americans suffered from tremendous economic dislocation related to urbanization. As a result, “a general consensus developed among the native-born equating poverty...sinfulness, and individual failure with foreign birth. Conversely, wealth, American nativity, and material success were equated with righteousness and moral behavior.”

The Surgeon General of the US in 1891, Dr. John Shaw Billings, remembered for introducing the collection and maintenance of “mortality and vital statistics” records, also accepted the notion of a meaningful distinction between the worthy and unworthy poor saying “there is a distinct class of people who are…almost necessarily idle, ignorant, intemperate, and more or less vicious, who are failures…and who for the most part belong to certain races,” by which he meant Catholics, Jews, Irish, Italians, and Eastern Europeans. He accepted the need to provide medical care for this group—but only to prevent the spread of infectious diseases to the remainder of the population.

And then we have Dr. Stephen Smith, another public health giant, who cautioned that medical charity can be “the inlet through which the habit of pauperism first creeps into the poor man’s house.” That is, helping people who are poor fosters dependency and is to be avoided. Remember Romney’s 47 percent? The people who are “dependent on the government” and who should simply “take personal responsibility” for their lives?

After discussing the way that concepts of the worthy and unworthy poor evolved in tandem with the growth of the hospital in the early part of the twentieth century, Rosner concludes by arguing that “although the language used today is significantly different from the angry, moralistic, and class biased rhetoric of the nineteenth-century debates, there is a similarity of meaning and analysis in arguments over definitions of the ‘truly needy, over the proper eligibility criteria for a variety of health programs like Medicaid and Medicare, and for the scope of other social service programs such as food stamps and welfare.” He was writing in 1982, but he could equally well be writing today, as we learn who it is that the Republican senators, or at least those who crafted the latest version of the health care bill, deem worthy. Full-time employees of well-heeled companies are worthy and older people, provided they don't live in nursing homes, are worthy. It's unclear if fetuses are worthy: health plans may be excluded from the insurance exchanges if they cover abortion, but health plans may also be allowed (through a waiver) although they fail to cover maternity care. Everyone else, the senators assume, could purchase health insurance—or better yet, not get sick—if only they had the necessary moral fortitude.

This isn’t how any other democratic nations in the world view health, medical care, or their citizens. They assume that everyone is "worthy" of basic medical care. They regard it as the responsibility of government to promote the health of their citizens, just as it government's responsibility to keep them safe and educated. Tell your senator that  enshrining archaic concepts of worthiness into law by severely restricting access to medical treatment is not the way to keep America great.

Money Down the Drain

This month, the Commonwealth Fund, a private foundation that supports independent research on the health care system, released a report on just how much Medicare beneficiaries pay out of pocket for health care. The news is sobering: on average, they spend $3,024 and that doesn’t include what they pay for premiums.

I’m not sure why premiums are considered separately, but they’re pricey, too. While Medicare part A (hospital coverage) is free for almost everyone over age 65, Medicare part B (doctors’ fees, outpatient care, and lab tests) costs $134 per person per month. That is, if you’re single and earned less than $85,000 in 2015, or married and jointly earned no more than $170,000. After those thresholds, the premium rises steeply, first to $187 per person per month (for joint incomes of up to $214,000) and then on up to a maximum of $429 for the most affluent. Then there’s part D for medications. The average monthly cost for a drug plan this year is $42 per person. And finally, there are Medigap plans if people want coverage for their deductibles and co-pays—the national average for those plans is $183 per person per month.

Looking at averages is not terribly enlightening, but fortunately, the report delves far deeper. It turns out that among  people with three or more chronic medical conditions (30 million of the 56 million people enrolled in Medicare), 29 percent spent at least 20 percent of their incomes on out-of-pocket medical care plus premiums. Among the nearly 14 million people with a serious physical and/or cognitive impairment, 38 percent spent at least 20 percent of their incomes on out-of-pocket medical care plus premiums. The poorest people are particularly hard hit: among the 17 million people with three or more chronic conditions or functional limitations whose incomes is less than 200 percent of the federal poverty level, 42 percent spend at least 20 percent on medical expenses.

After reading the report, I had two questions. First, how do Medicare beneficiaries in Medicare Advantage plans fare compared to those in conventional, fee-for-service Medicare? They pay part B premiums plus a part C premium—which is instead of Part D but also includes more comprehensive coverage with fewer co-pays and deductibles. The actual part C premiums vary tremendously, both within a given insurance company (in Massachusetts, for example, Blue Cross offers 6 different Medicare Advantage plans, with monthly premiums ranging from 0 to $295 per person; a middle-of-the-road plan costs $79 per month) and across companies. My suspicion is that people with multiple chronic conditions or functional impairment are less likely than their healthier peers to choose Medicare Advantage—but that they would have lower out-of-pocket costs if they did. Someone should do the analysis.

Second, how would the ACA-Repeal-and-Replace bill passed by the House of Representatives affect Medicare? The answer seems to be that it would only affect it indirectly, mainly by  cutting federal spending on Medicaid by $880 billion over ten years. This would profoundly impact the 11 million people who are currently enrolled in both Medicare and Medicaid. It would also worsen the overall solvency of the Medicare program. The ACA levies an extra payroll tax of 0.9 percent on individuals earning over $200,000 a year ($250,000 for couples), a tax that is due to expire in 2018. The new bill would end the payroll tax a year early—thus ensuring that the Medicare trust fund, which pays for part A, will run out of money before 2025.

The take home message? Find out if there’s a good Medicare Advantage program available to you and what it costs. It just might be a better deal than regular Medicare. And lobby your senators to make sure that any new variant of repeal-and-replace doesn’t gut Medicaid or bankrupt Medicare.

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