The line between life-giving therapies and too much treatment is hard to see. In Ordinary Medicine (Duke University Press, 2015) medical anthropologist Sharon Kaufman investigates the drive behind the “more is better” approach to medicine, while striving to rethink and reshape medicine’s goals. The following excerpt taken from the Introduction briefly describes the dilemmas modern American health care faces and how Kaufman has gained insight into the field.
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Diagnosing Twenty-First-Century Health Care
“Medicine today comprises an unthinkably broad array of knowledge and skills, professions, coalitions, and interest groups, fears and promises, fantasies and soon-to-be-realities, concrete and virtual institutions, folklores and sciences.” —Arthur Frank, The Renewal of Generosity
Medicine has changed radically over the past fifteen years. Some of those changes are obvious and dramatic and have provided welcome benefits. Who doesn’t welcome the availability of cholesterol- lowering drugs, joint replacements and arthroscopic surgery, the anti-retrovirals that have made AIDS a chronic, manageable illness, and so much more?
Other equally obvious and dramatic changes, however, have become the subject of widespread lament: too much life-sustaining but death-prolonging technology is being used at the end of life; drug companies are paying physicians to promote their products; expensive tests, devices, and procedures are overused; drug costs, especially for cancer treatment, have skyrocketed, yet the new drugs don’t necessarily offer better results than existing treatments. Most everyone who has had intimate dealings with the U.S. health care system of late can add to this list of obvious and well-publicized problems.
However, many equally dramatic and relatively recent changes within the U.S. health care delivery system are far less visible—indeed I contend that they are very well hidden. But although they function well below the radar of scrutiny, these changes have not just complicated medical practice and health care delivery but actually have altered their very nature. They have also altered how and what we think about health per se and about the options we have for controlling our life span and that of our loved ones. Therein lies the health care dilemma that patients, families, and providers by the millions face every day.
Today’s Quandary: When, Where, and How to Draw the Line?
When faced with a life-threatening disease, most of us want the miracles of medicine to extend our lives into a vaguely perceived open-ended future. Yet we don’t want to live too long, that is, into a medically prolonged period of suffering or suspension in some limbo, no longer who we were but not yet dead. The big problem, the intractable, increasingly apparent problem is that few know when that line between life-giving therapies and too much treatment is about to be crossed. The burden for knowing where that line sits, and then when and how to respond to it, rests first with doctors and the systems in which they work, yet neither the doctors nor the systems have been effective in recognizing it or foreseeing the consequences of crossing it. And so we find ourselves in a conundrum: the postwar baby boom generation grows older while confronting the old age of its parents; the oldest generation is living longer but not always better; and the widespread lament about where that line is located and what to do about it grows ever louder.
Thus the quandary for patients, families, and physicians is about how to live in the world of modern medicine and its life-giving tools, about getting the medicine we wish for but then having to live with the unsettling and far-ranging consequences.
This quandary, its origins, its drivers, and our troubled efforts to resolve it, are the focus of Ordinary Medicine. I focus on the ethical, cultural, and political forces driving health care delivery, forces that have made it difficult, if not impossible, to see the line between enough and too much or even to acknowledge that line’s existence or its importance for patient care, medical practice, and the future of the health care system. Not only is this quandary often deeply unsettling for doctors, patients, and families, but it also lies at the crux of the impasse the United States has reached regarding health care reform. Only by seeing the way ordinary medicine works, the forces that shape the quandary as well as medicine’s successes, can we hope to minimize that quandary and, in addition, work our way out of our untenable national situation.
Three separate but interrelated societal developments that permeate the fabric of American society also control our health care quandary.
The Increased Role and Influence of Industry
The first development is the rising power of the pharmaceutical and device industry, whose market-driven, market-expansion goals have a greater influence on the development and use of treatments than ever before. Industry largely determines which therapies will be investigated and which patient-consumer markets will be exploited. As a consequence its role in determining what doctors recommend and what patients ask for is also increasing. Biomedical research in the United States is a $100 billion enterprise that has approximately doubled in scope since 1999.
There has been a significant shift in the major source of research funding, from government to industry. In 1980, 32 percent of clinical research was funded by private pharmaceutical, medical device, and biotechnology companies. By the mid-1990s that figure had increased to over 50 percent; today it is 65 percent.
The clinical trials industry has mushroomed in recent decades. In 2000 the National Institutes of Health established a data bank of clinical trials information, ClinicalTrials.gov, listing some four thousand trials. By January 2014 its home page listed 159,000 ongoing clinical trials. Clinical trials have acquired strong influence beyond the laboratory. Since the turn of the millennium they have become a culturally prominent and powerful fixture in American life, further strengthening the role they play in ordinary medical practice. Patients and their families, increasingly adept at using the Internet to conduct research on diseases and treatments, have learned to view participation in clinical trials as disease treatment, as an individual right, and as the embodiment of hope.
The Proliferating Number of Treatment Options
The second development is the ever increasing number of treatment options to which doctors, patients, and their families have access. These readily available options (which are extremely difficult to say no to) contribute to the overuse of common therapies and diagnostic tools such as the MRI, colonoscopy, and cardiac defibrillator.
The increasing number of trials has generated ever more evidence of therapeutic value. Once this evidence is established for a new drug, device, or procedure it is allowed to go on the market. The evidence and the market presence explicitly influence not only what physicians recommend but also what patients learn to want. Unfortunately studies show that new treatment options do not necessarily offer patients better health or a longer life span.
New technologies for diagnosis and treatment, once they are approved for use by the Food and Drug Administration and reimbursed by Medicare and other insurers, are almost always accepted by physicians and patients. Once accepted, they become standard and their use often spreads beyond the population for which the technology was devised. For example, when the implantable cardiac defibrillator (ICD) was introduced in 1985 it was a “treatment of last resort” for very specific heart problems. By 2005 it had become a common surgical tool to stave off death, even for the oldest patients. Similarly the artificial heart pump (left ventricular assist device, LVAD) has shifted from being an experimental device intended for temporary use to being a standard long-term solution for end-stage heart disease.
Americans’ Perspective on Aging and the Timing of Death
The third societal development orchestrating the health care dilemma is the profound impact our society’s unrelenting prioritization of the use of new technologies has had on our perspective on aging and on death itself—especially with respect to the drugs, devices, and surgical procedures now available to treat what used to be end-stage diseases. In the United States today most deaths, regardless of a person’s age, have come to be considered premature. Because medicine’s tools can seemingly “add” time, the value of life has come to be measured, in large part, by its length. This has magnified our quandaries by reinforcing the desire for and rationality of intervening at ever older ages to extend life, regardless of the emotional and financial costs. The central role of high-tech life-prolonging treatments means life extension for many more older people, but it also means choosing among the available options, which often burdens patients and families with a heavy sense of responsibility for making the “right” choice. Will a treatment prolong the patient’s life or simply prolong an unwanted kind of dying?
The apparent “good” of all new technologies and the burdens they create now meet an aging population. Over the past fifteen years the U.S. population in general, and therefore the patient population, has aged. In 2010, 13 percent of the population was over age sixty-five; 2 percent was over eighty-five. By 2050 those percentages will be 20 and 4 percent, respectively.
The surge of advanced treatments that keep lethal diseases at bay and our romance with new medical technologies go on relentlessly, with ever older persons on the receiving end and growing numbers of families caught in the tangle of emotional, financial, and organizational responsibilities of care. The particularly American ethos of “more is always better” underlies the high-tech and aggressive approaches to treatments. At the same time, fear, ambivalence, and complaints about too much proliferate.
The increase in the use of high-tech treatments for older patients is also reflected in ever increasing costs to the Medicare program and the nation. (Medicare is the federal program of health insurance available to persons sixty-five and older.) For example, the LVAD costs approximately $250,000—ten times more than the ICD. The number of patients over seventy-five who have been started on maintenance kidney dialysis has tripled in the past two decades, even though dialysis therapy does not necessarily improve quality of life or prolong life for elderly persons. Since 2001, when kidney transplantations from living donors first exceeded those from deceased donors, adult children have been donating their kidneys and parts of their livers to their parents and other older relatives with ever greater frequency.
Why bother to write a book about the quandary of crossing the line when so many millions of people in their later years have reaped the benefits of modern medicine? When so many have had their lives prolonged by cardiac procedures and cancer treatments? When so many live not only longer but better as a result of those treatments?
As a medical anthropologist, I have spent more than twenty years watching this quandary play out and asking why it occupies so much of American political debate and cuts such a wide swath through the public conversation about control over the time for dying. Mostly the quandary is experienced by older persons, their families, and their doctors. In 2002 I began to observe older patients in specialty clinics, where they were most often offered life-prolonging therapies. I listened to hundreds of patients, physicians, and family members deliberate about what to do and heard them express their hopes, fears, and reasoning. Thus I have had a ringside seat on the evolution of their dilemmas about crossing the line of “too much” and their desire to do everything possible to prolong life. Many patients ask their doctors what they themselves would do in similar situations, and doctors, notably, do not answer definitively.
I started tracing the themes that emerged in the clinic conversations about evidence and expectations, norms and standards, risks, hope and ambivalence, the urge to try everything and the demand to stop. The talk mostly settled on scientific evidence, standards of care, risk reduction, and necessary treatments, which led me to investigate how and why these have come to organize our “more is always better” approach to medicine. That quest, in turn, led me to think about the larger engines of the biomedical economy—the research and insurance industries (especially Medicare)—and their impact on what we do when life is at stake.
The Chain of Health Care Drivers: Four Invisible Controlling Factors
What emerged was my realization that there are unseen, determining forces, a chain of health care drivers, behind the dilemmas twenty-first-century American health care poses: Why do those of us caught up in the health care system often struggle so hard to decide what we want from potentially life extending treatments? Why do we not know what to expect from them? Why do physicians prescribe specific treatments? Why do they sometimes go against their own professional values when making treatment decisions to prolong life? These quandaries are faced by millions every day—yet few if any of us can glean the lessons learned from the experiences of others. That is because the forces that determine the structure of the U.S. health care delivery system today are neither visible nor easily quantifiable, and what is hidden does not easily offer up the tools for understanding its nature. With those tools, doctors and patients might make different choices—choices that would promote significant system change.
Four primary drivers build on one another in a chain of events that governs medicine today. Those drivers and their effects on the practice of medicine and on the lives, health, and aging of all of us are the focus of Ordinary Medicine. Those drivers reveal the scope of our health care predicament and why we can’t clearly see how to fix it. They show us what needs to be fixed and why. They are the key to restoring the primacy of the social good of medicine.
1. The initial driver is the biomedical research industry and its mushrooming clinical trials engine, which is churning out evidence of effective therapies at an unprecedented rate.
2. The committees that determine Medicare and private insurance payment policies evaluate that evidence to determine whether the therapy, device, or procedure in question should be reimbursable. If it is, physicians will prescribe it, insured patients will have access to it, and patients and families will want it.
3. Once a therapy is reimbursable by insurance, it almost instantly becomes a standard of care.
4. Finally, once therapies become standard, they also become ethically necessary and therefore difficult, if not impossible, for physicians, patients and families to refuse.
Health Care Drivers and the Ethical Field
The individuals seventy and older whom I sought out in high-tech treatment centers and the small, airless exam cubicles of community physicians’ offices in several U.S. cities between 2002 and 2011 had life-threatening diseases. Slowly over those years the determinative power of the chain of health care drivers became visible to me. And because I was observing human beings interacting in intimate and often desperate circumstances, what emerged was not just the structure of the chain but also its ethical underpinnings. It is a chain predicated on and imbued with ethical choices, political priorities, and economic commitments—in other words, it is based on and reflects cultural values. Not everyone’s values, of course, but those that, through the political will of some, have become dominant in the health care arena.
These values dominate all of health care delivery today, not just health care for the elderly. Once one notices how strongly determinative these drivers are, however, it becomes perfectly clear that patients and families (and sometimes doctors) actually do not decide about treatments so much as they yield to procedures that the chain has made normal and ordinary. Everything I observed that affected patients and families on a human level—their options and rationales, emotions and ambivalence, their choices among the normal and normalized pathways of treatment and the ways that treatment goals impacted their experiences, sensibilities, and actions—proved to have these drivers and the values they represent as their common frame.
After spending many, many hours with physicians and older patients and their families, I also realized that the values and commitments that drive the entire health care enterprise—especially those of individualism, market-based approaches to health care services, and an instrumental or mechanistic view of medical “progress”—are so difficult to discern because they are exceptionally diffuse. Because they penetrate so much of American society and so heavily influence the patterns of biomedical research, medical treatment, and patient expectations, I think of them as forming an ethical field. This ethical field shapes health care policies, the development of biomedical technologies, and how evidence about treatment is produced and employed in clinical care. It is constituted also by what patients and families come to need and want. Ultimately the effects of the ethical field are seen in the physical care-giving tasks and emotional burdens placed on families. Its influence permeates every aspect of health care delivery and affects everyone: clinicians, patients, and families alike. Although it has grown increasingly dominant in recent decades, this ethical field has nonetheless already become, like the air we breathe, mostly unnoticed.
This excerpt has been reprinted with permission fromOrdinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Lineby Sharon R. Kaufman and published by Duke University Press, 2015.