A Shot of Irish Whiskey

I recently stumbled across The Way We Die Now in the new books section of my local library. I hadn’t heard of it or its author, the Irish gastroenterologist Seamus O’Mahony, and I couldn’t find any reviews in American publications. Intrigued, I checked it out. It’s one of the more insightful—and simultaneously annoying—-of the  long list of books about death and dying.

The author makes several observations that are worthy thinking about. First, he says that dying is inherently messy and distressing; our attempts to sanitize it with what he calls the “syringe-driver” (Britishese for a “pump,” a way to deliver opioids such as morphine intravenously or subcutaneously or even directly into the central nervous system in a continuous, steady fashion) or with physician assisted suicide are vain attempts at controlling the uncontrollable. Second, and on a related note, he mocks the insistence by some that dying should be an occasion for “personal growth;” there’s nothing uplifting about dying and it is seldom an opportunity for repairing longstanding personal rifts. Third, he derides all self-proclaimed “death experts,” by which he principally means palliative care physicians, although he regards proponents of “narrative medicine” as similarly tainted. While acknowledging some of the contributions of palliative medicine, such as better pain control and the development of inpatient hospices, he feels strongly that the medical care of the dying should remain in the hands of primary care physicians.

Death is messy: O’Mahony discusses the writings of several public intellectuals, Philippe Aries, Ernest Becker, and Ivan Illich, on this subject. Aries, writer of the monumental history, Western Attitudes Towards Death, O’Mahony describes as a “romantic reactionary who looked back to an idealized, pre-industrial past” because he yearns for a peaceful death, at home, surrounded by family. Becker, author of The Denial of Death, argues that fear of death is the essence of being human and that each individual must sublimate his or her “fear of extinction with heroic projects designed to transcend death.” And Illich, iconoclastic writer of Medical Nemesis, laments the medicalization of death, exhorting us to “learn to cope” with the external constraints on the human condition.

I also was deeply influenced by these three writers: Aries because the historical perspective helps us see that the way things are today isn’t necessarily the way things have to be; Becker because I agree that the idea of an “immortality project” is tremendously useful for those of us who are aware of our mortality and don’t believe in an afterlife; and Illich because he opened my eyes to the notion that our world is excessively medicalized. Thanks to Aries, I have sections on history in many of my books—including my forthcoming Old and Sick in America, where I use an historical perspective to demonstrate the power of the Medicare program to shape the experience of illness. In homage to Becker, I called my last book, The Denial of Aging. And one of my earliest articles, a critique of the modern nursing home, decries its medicalization. I share with O’Mahony the view that death today is over-medicalized, that we shouldn’t expect to control the exact time and course of our dying, and that the clergy (including secularly oriented chaplains) and social workers are as necessary as medical doctors.

Death isn’t an occasion for personal growth: It’s not just dying that isn’t an opportunity for personal growth. The whole idea of “personal growth” rubs me the wrong way, at least as embodied in the work of Abraham Maslow, with his claims about self-actualization, or the “desire to become more and more what one is, to become everything that one is capable of becoming.” I’ve tended towards the view that each person should make the most of his or her own talents and abilities, and should seek satisfaction by applying those talents and abilities to improve the world. But whether or not self-actualization is every a desirable goal, surely it is too much to ask of someone who is dying that he or she continue to “grow.”

We shouldn’t leave death experts in charge: Palliative care increasingly sees itself as the specialty that is uniquely able to communicate, to break bad news, to help patients fill out advance directives, and to control pain and other symptoms. I am not as cynical as O’Mahony about the importance of communication and the possibility of physicians learning to be better at it—he drips with disdain as he asserts that “one of the more pernicious myths of modern medicine is the notion that a doctor with ‘communication skills’ and a sympathetic manner can somehow magically transmute bad news into something palatable…” Yet at the same time, he acknowledges that the “Liverpool Care Pathway,” an algorithm for caring for dying patients in British hospitals that was done away despite its many successes because of lapses in communication: “poor communication was at the root of virtually all complaints about the LCP.” And I think O’Mahony is mistaken when he ridicules the idea that breaking bad news is a special skill—the issue isn’t that when done well, patients accept the news with good grace; rather it’s that when done badly, patients feel abandoned, frightened, and angry. Finally, I share O’Mahony’s concerns about instructional advance directives—documents that purport to dictate exactly what medical procedure will be done in particular circumstances. He writes that “advance directives perpetuate an illusion that we can control, in minute detail, our treatment of an unpredictable illness at some unknown time in the future.” But to confound advance care planning, which can focus far more broadly on goals rather than on the specifics of treatment, with advance directives, that are either uselessly vague or excessively specific, is profoundly misguided. 

That said, I agree that palliative care principles—a view of the end of life as necessitating far more than just medical care, a belief that patients and families need information and guidance to be provided by a kind and compassionate professional, and a recognition that physical symptoms can often be ameliorated if not ablated---should be an essential part of what all doctors do.

So ignore the misunderstandings about the American health care system—O’Mahony says that nearly half of Americans die in hospice care because insurers discovered that “it saves money” and is seemingly unaware that this is predominantly home hospice, not institutional hospice, and that tthat the work from Mass General showing that early palliative care prolongs life in advanced cancer said nothing about cost. He likewise thinks that “in the US” death with dignity “has become a euphemism for euthanasia” (it hasn’t). Try not to mind the ridicule he heaps on both dignity therapy and narrative medicine, which he accuses of advocating that physicians take on a “quasi-sacerdotal role.” Appreciate instead the nuggets of truth: a physician’s job is the treatment of illness (not spiritual malaise or existential angst); the syringe-driver (or morphine pump) “allows for a softer, less frightening, final agony;” “palliative care should be at the center of what all doctors do;” and physicians should treat patients with kindness, courtesy, and yes, dignity.

A Bundle of Joy

As expected, CMS announced last week that its “Comprehensive Care for Joint Replacement” program was on its deathbed. This program “bundles” Medicare payment for hip and knee joint replacement surgery into a single payment to cover hospital and post-acute care. Initially rolled out on a trial, voluntary basis, the program became mandatory for all hospitals in 67 areas of the country. The plan was to extend it to 98 metropolitan areas. Instead, is cutting back the number of areas where the program is mandatory to 34. Since Tom Price, Secretary of the Department of Health and Human Services, has previously stated that the mandatory bundling initiative was tantamount to “experimenting with Americans’ health,” and CMS director Seema Verma concurred, the retrenchment bodes ill for the health of the program going forward.

Now, bundling as instituted by CMS is not perfect. The way the program works is that hospitals are held accountable for the cost of care during the hospitalization and for 90 days during the post-acute period. The hospital gets a bonus if the total cost of care falls below a set threshold and pays a penalty if it exceeds that threshold, incentivizing the hospital to work with orthopedists and rehab facilities to optimized care. Concerns have been raised that hospitals are unfairly penalized for providing care to sick, complex patients because the reimbursement rate is not adjusted to account for these factors. Hospitals have protested that they should not be the only ones to be held to account—why not extend the circle of responsibility to include orthopedists and the post-acute units themselves? But while the program could be improved, it has nonetheless shown great promise.

First there was the voluntary program, which led to a greater fall in costs when reimbursement came as a bundled payment than with conventional fee for service payment. More impressive, since after all a voluntary program selects for those institutions that are best prepared to improve performance, were the preliminary results of the mandatory program. In one of the 67 areas where the model was mandatory, average Medicare expenditures per episode fell 21 percent; in patients with complications, expenditures fell 14 percent. A little more than half of the savings came from internal hospital cost reductions; the remainder came from decreased post-acute spending. Quality remained unchanged.

What’s important to realize is that bundling makes sense from a clinical perspective. It forces the players to coordinate care—if the acute care hospital sends patients out too soon or does not communicate with the rehab facility, readmissions are likely to result. It appropriately thinks in terms of “episodes” of care—ideally, it should incorporate the evaluation and diagnostic studies done prior to admission as well as hospital and rehabilitative care.

“Bundling” is the conceptual basis of managed care. It encourages everyone participating in patient care to share in the responsibility for clinical outcomes. The Comprehensive Care for Joint Replacement program is a step in the right direction. We should go forwards, not backwards. Let Tom Price know!

Rescue and Reform

A new poll conducted by the Kaiser Family Foundation found that nearly 80 percent of Americans want Congress and the President to modify the Affordable Care Act to make it work. They don’t want repeal and replace. 
       The numbers are impressive: 95 percent of Democrats and 52 percent of Republicans favor a legislative fix to the current law. Even among Trump supporters, an absolute majority (51 percent) support such an approach. In fact only 17 percent of the public (although 40 percent of Republicans) believe the Trump administration should act to initiate the infamous “death spiral” by taking such steps as eliminating the universal mandate and withdrawing subsidies to poor people. Taking Medicare as a model of sweeping, comprehensive health care legislation, we can look at just how much the program was reformed by Congress in the first 15 years after the law went into effect.
       Passed by Congress in 1965, Medicare first became a reality on July 1, 1966. In 1972, Medicare eligibility was extended to people under age 65 with long-term disabilities as well as to those with end-stage renal disease. This was no minor tweaking of the program: today 9.1 million people out of the 55 million on Medicare are in the under-65-with-disabilities category. In the last year for which data are available, Medicare spent a whopping $30.9 billion on end-stage renal disease out of total expenditures of $646 billion. 
       In 1973, “Medicare HMOs” were introduced. The federal government established standards for what benefits had to be provided, but basically outsourced plan design, management and marketing to private insurance companies. The name of this program has evolved over time, from Medicare Choice + to the current Medicare Advantage plan, but the idea remains unchanged: instead of enrolling in Medicare Parts A, B, and now D with deductibles and co-pays, Medicare enrollees can opt for one-stop shopping. Today, a record 17 million people, or 31 percent of all Medicare beneficiaries, are enrolled in a Medicare Advantage plan.
       Jumping ahead to 1980, the decision was made to broaden coverage of Medicare home health services, allowing more people to stay out of hospitals and nursing homes because they received physical therapy and occupational therapy, as well as visiting nurse services at home. At the same time, supplementary Medicare insurance plans (“Medigap”) for those people not enrolled in an HMO, came under federal oversight to cut down on all too common abuses found at the time. 
       And then in 1983, in what was perhaps the most far-reaching reform of the Medicare program ever instituted, prospective payment was introduced for hospital care. What this meant was that instead of hospitals charging whatever they wanted—with Medicare dutifully paying soaring bills—Medicare set rates that were based on the expected length of stay for a given condition. The hospital got paid that fixed amount (adjusted for co-morbid conditions and geographic variation in the cost of living) regardless of how long a patient was in the hospital. In other words, patients with an unusually long length of stay cost the hospital money and patients who were discharged unexpectedly early generated revenue for the institution. The result of this innovation, in addition to controlling how much money Medicare spent on hospitalizations, was to shorten length of stay, moving much “post-acute” to the home or the skilled nursing facility.
       Reforming Medicare didn’t stop in the 1980s. But my point is not to present an extensive history of the Medicare program (though if your interest is piqued, you might like my forthcoming book, Old and Sick in America: the Journey through the Health Care System); rather, it is to emphasize the complex, innovative, health care legislation seldom bursts onto the scene fully and impeccably formed. It usually needs to be fixed. The ACA is no exception.

       After chanting “repeal and replace” for so many years, the Republican majority needs to save face. But the way to do t do that is not to sabotage what we have, a compromise bill designed to save private health insurance rather than jettisoning the industry in favor of single payer coverage. The Republican Party should appropriate the idea behind the ACA as its own, acknowledging its true founding father, the extremely conservative Heritage Foundation. Maybe what’s needed is a new mantra. How about “rescue and reform?”

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