By Michael K. Gusmano, Karen J. Maschke, and Mildred Z. Solomon
Patient-Centered Care, Yes;
Patients As Consumers, No
ABSTRACT There are numerous calls for building health care delivery
systems that are more patient centered. The focus on patient-centered
care has increasingly begun to rely upon, and even merge with, the
concept of patients as consumers. Early references to patients as
consumers were made by patient advocates who were attempting to
challenge professional and corporate dominance in health care. Today,
“consumer-driven” health care has become associated with neoliberal
efforts to emphasize market factors in health reform and deemphasize
government regulation and financing. In our view, a narrow focus on
consumerism is conceptually confused and potentially harmful. The
consumer metaphor wrongly assumes that health care is a market in the
usual understanding of that term, that the high cost of US health care is
a function of excessive consumer demand, and that price transparency
and competition can deliver on the promise of reducing costs or ensuring
quality. Furthermore, a consumer metaphor places disproportionate
burdens on patients to reduce health care costs, and it could erode
professional obligations to provide appropriate and effective care.
Building a health care delivery system that is more patient centered
has a lengthy history, including
powerful grassroots efforts beginning in the 1960s. These initiatives
see patient-centered care as an important means
of improving health outcomes1 and a morally
worthy good in itself.2,3 As a means to an end,
patient-centered care includes efforts to make
the care delivery system more efficient and easier
for patients to navigate. Patient engagement—a
particular form of patient-centered care—yields
better, well-documented outcomes by stimulating patients to take on more active roles in promoting and maintaining their health. As a moral
end in itself, patient-centered care emphasizes
the importance of honoring patients’ values and
preferences, and it is less paternalistic and more
respectful. Although there are concerns about
how the concept might be misapplied,3 there is
broad support for it, evidenced by federal investment in studying how best to ensure patientcentered outcomes and patient-centered outcomes research.4
Increasingly, however, the focus on patientcentered care has begun to rely upon, and even
merge with, the concept of patients as consumers. In this article we call for greater vigilance in
distinguishing patient-centered care from the
concept of consumer-driven health care. Too often consumer-driven health care is used as if it were
a synonym for patient-centered care.We argue that
consumer-driven care is based on critical myths
about what creates, and what can rein in, highcost care. Moreover, the consumer-driven concept can easily place the burden for systemwide
cost containment on the shoulders of individual
patients. In this article we offer a brief history of
the patient-centered care movement, demonstrate how the language of patient-centeredness
doi: 10.1377/hlthaff.2018.05019
HEALTH AFFAIRS 38,
NO. 3 (2019): 368–373
©2019 Project HOPE—
The People-to-People Health
Foundation, Inc.
Michael K. Gusmano
(gusmanom@thehastings
center.org) is an associate
professor of health policy at
Rutgers University, in
Piscataway Township, New
Jersey, and a research scholar
at the Hastings Center, a
nonprofit bioethics research
institute in Garrison,
New York.
Karen J. Maschke is a
research scholar at the
Hastings Center.
Mildred Z. Solomon is
president of the Hastings
Center and professor, part
time, in the Department of
Global Health and Social
Medicine, Harvard Medical
School, in Boston,
Massachusetts.
368 H ealth Affair s March 2019 38:3
Patients & Consumers
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is becoming appropriated by those advocating
market reforms, and then articulate why the consumer metaphor is misguided and potentially
harmful.
Origins Of The Patient-Centered Care
Movement
The term patient-centered medicine was introduced by Enid Balint in the late 1960s to contrast
with “illness-oriented medicine.”5 As with the
“biopsychosocial” model developed in the 1970s,
the intent was to emphasize a holistic approach
to patient care that would include attention to
more than just the physical markers of illness.6
Throughout the 1960s and 1970s a grassroots
effort sought the right of patients to informed
consent and to have greater say over their care.7
These included efforts by the women’s health
movement,8 which fought against both sexism
and the profit motive in medicine.9 For example,
in 1970 a group of women led by clinical social
worker Nancy Miriam Hawley published a booklet titled “Women and Their Bodies,” in which
they argued that women should have a greater
say in their health care. This was followed in 1973
by the publication of Our Bodies, Ourselves by the
Boston Women’s Health Book Collective and
inspired efforts to challenge the routine use of
procedures such as hysterectomies.10
In 1986 the patient-centered care movement
advanced further when philanthropist Harvey
Picker established the Picker Foundation.11 After
witnessing the care his wife received for an
incurable infection, Picker decided that he
wanted the medical system to treat patients as
persons, rather than “imbeciles or inventory.”12
The Picker Foundation transferred its assets to
the Commonwealth Fund, which created the
Picker/Commonwealth Patient-Centered Care
Program. Among other accomplishments, the
program identified sources of distrust between
patients and health care providers and helped
popularize the term patient-centered care. By
the end of the program in 1995, it had created
the not-for-profit Picker Institute.
In 2001 the Institute of Medicine (IOM) published two reports. The first, Envisioning the National Health Care Quality Report, defined patientcentered care as “health care that establishes a
partnership among practitioners, patients, and
their families (when appropriate) to ensure that
decisions respect patients’ wants, needs, and
preferences and that patients have the education
and support they need to make decisions and
participate in their own care.”13(p7) In the second,
Crossing the Quality Chasm,
14 patient-centered
care was identified as one of six core elements
of high-quality care.
Although there remains considerable debate
about the definition of patient-centered care and
how to measure it,1 patient engagement has been
well researched. There is evidence that patient
engagement is effective in achieving health outcomes. One dimension of patient engagement
involves patient activation, a construct developed over the past two decades.15 When patients
are helped to take a more active role in maintaining their health, preventing disease, and managing chronic illness, health status improves.3,16,17
Another dimension of patient-centered care
that can lead to better outcomes is care coordination. Patients often want and need the medical
professionals caring for them to speak with
each other. When medical professionals fail to
communicate, it places additional burdens on
patients and can result in poor outcomes, including dangerous overuse of medications, increased
use of emergency departments, and inpatient
hospitalizations.18,19
But what if the preferences of patients are not
consistent with what medical professionals view
as safe and efficient? What if the demands of
patients conflict with what medical professionals believe is reasonable? The tension over how
much control patients should have over their
care has never been fully resolved. Donald
Berwick, the former administrator of the Centers
for Medicare and Medicaid Services, argued “for
a radical transfer of power and a bolder meaning
of ‘patient-centered care,’”2(p w555) in which “leaving choice ultimately up to the patient and family
means that evidence-based medicine may sometimes take a back seat”2(p w561) because empowering patients should be viewed as a good in and of
itself, not merely a means of achieving greater
safety and efficiency in the health care system.
For all of these reasons, patient-centered care
and patient engagement represent worthy goals
for a health system intent on improvement.
Increasingly, however, the language of patientcentered care is being adopted by advocates of
market solutions to health care costs. For example, conservative critics of government health
care regulation and financing are using the term
patient-centered care nearly synonymously with
consumer-driven or consumer oriented care.
20 Former House Speaker Paul Ryan (R-WI) argued
that “improving the flexibility of health savings
accounts and other consumer-oriented health
care options will further enhance individual
choice.”21 This language was echoed by the
conservative interest group Americans for Prosperity, founded by David and Charles Koch.
Americans for Prosperity referred to Speaker
Ryan’s “Better Way” health plan as “patientcentered.”22 Patient-centered care is now a term
often used to emphasize neoliberal commitMarch 2019 38:3 Health Affairs 369
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ments to using market forces to effectuate health
care reform.23
Early references to patients as “consumers”
were made by patient advocates who were
attempting to challenge professional and corporate dominance in health care. In a 1974 report
titled Advancing the Quality of Health Care, the
IOM called for “enlarging consumer influence”
so that patients “can be informed of the relative
effectiveness of various health providers and
make their choices accordingly.”24(p6) This was
a call for shifting control over decisions from
physicians to patients. The first branch of Ralph
Nader’s Public Citizen organization—called the
Health Research Group—tried to provide consumers with a directory of doctors as well as their
fees, hours, and other items, in an effort to provide patients with the information they needed
to make informed decisions about their care,
instead of relying on physicians to make these
decisions on their behalf.25
In contrast to the early use of these terms to
connote ways of empowering patients, consumer
driven and consumerism are now associated with
market-oriented health reforms that place a burden on patients to solve cost and quality problems.26 These consumer terms function as metaphors that represent conceptual confusion and
are potentially harmful. The terms wrongly assume that health care is a competitive market
and that the high cost of US health care is a
function of excessive consumer demand. Because these requisite assumptions are not met,
the metaphor’s remedy—price transparency and
competition—cannot deliver on the promise of
reducing costs or ensuring quality. Moreover, it
is misleading to use consumer driven, defined in
this narrow sense, as a synonym for patient centered. A consumer metaphor could also erode
obligations by policy makers and health care systems to build a truly patient-centered care system. We take up each of these problems below.
Health Care Is Not A Market
Patients can be construed as consumers only if
they are operating within a market. But health
care is not a market in the usual way that markets
are defined, and thus patients do not have the
power that consumers have to shape that market.27 Patients are not as well informed as physicians are about medical care. Often patients do
not have well-formed preferences, and they seek
care under circumstances in which they do not
have the time or emotional stamina to shop
around on the basis of quality and price.28 And
if policy makers treat health care like any other
market, there will likely be very limited cost savings, if any, and huge inequities will continue
and likely increase. As Nancy Tomes puts it, “this
linguistic transformation has come to represent
the worst consequences of American medicine’s
growing market orientation.”25(p83)
The High Cost Of US Health Care Is
Not Due To Excessive Consumer
Demand
Policy makers in the US frequently act as if the
main problem is excess volume,29 which in turn
arises from excess patient demand. Because
most patients in the US have some form of health
insurance, they are insulated from the full cost of
health care. Some commentators are concerned
that there is a potential moral hazard, because
insurance provides patients with an incentive to
consume health care beyond the point at which
marginal benefit equals marginal cost.
More than just a technical term, moral hazard
is a concept that is normatively loaded. It suggests that health care spending is the result of
policies that offer an incentive for bad behavior.
As Deborah Stone explains in her critique of this
concept, “insurance, by lowering the price of
medical care, induces people to get something
good for themselves without having to pay its full
cost.… When insured people make such decisions, they act selfishly, without regard to the
effect of their behavior on others—especially
on taxpayers in the case of social insurance. In
the moral lingo of today, they fail to take personal responsibility.”30(p888)
The claim about moral hazard is partially supported by the findings of the Rand Health Insurance Experiment in the 1970s.31 Researchers
found that higher out-of-pocket obligations, or
cost sharing, do lead to lower health care spending. However, critics argue that the experiment
also found that cost sharing was equally likely to
reduce appropriate health care use, not just
wasteful procedures. Greater out-of-pocket
spending will also place greater burdens on people with lower incomes.
Moral hazard concerns suggest that the use of
expensive hospitalizations, surgeries, and other
interventions are shaped primarily by ability to
pay. This perspective fails to recognize that most
people consume such services only reluctantly.32
The use of these services is often driven by providers, not by patients. Indeed, academics and
policy makers have expressed concern for decades about the reliance of the health insurance
system on fee-for-service payments to physicians, hospitals, and other health care providers.
Fee-for-service provides an incentive for physicians to deliver additional and more complex
services than patients need (or more care than
economists would view as efficient) because
Patients & Consumers
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health care providers receive an additional payment for every additional service—and services
that are viewed as more technically complex generate higher fees.32 In most countries outside the
US, however, “provider-driven” demand is not
countered by shifting costs to individual patients
and asking them to control costs by acting as
informed consumers in a marketplace. Instead,
most countries rely on a combination of overall
budget targets for health care services and
systems of all-payer rate regulation in which
national health insurance funds negotiate rates
for hospital, physician, and other services with
representatives from those professions.33 Because the US does not use the negotiating power
of government to confront the power of providers, it pays higher prices for all medical goods
and services than other countries do.34
Recent studies reinforce the idea that most
payers in the US do not have the bargaining
power necessary to drive down prices, especially
in regions where providers have a strong market
position. In areas of the country where hospitals
have greater market power, hospital prices are
substantially higher.35 Even after controlling for
other factors, Zack Cooper and colleagues found
that “hospital prices in monopoly markets are
15.3 percent higher than those in markets with
four or more hospitals.”35 In contrast, the State of
Montana was able to drive down prices for its
state workers’ health plan because it used its
bargaining power with hospitals to set “reference prices,” instead of allowing hospitals to
demand prices for their services and negotiating
discounts from that starting point.36 The experience in Montana also bolsters our contention
that transparency cannot substitute for price negotiations by institutional payers.
Not only is the use of market competition limited when it comes to asking patients to make
efficient decisions about health care services and
providers, but it also does not work well when it
comes to making decisions about health insurance plans. Competition among health plans in
the Medicare program was promoted as a method for reducing the costs of the program, but
Medicare Advantage has not produced the intended savings. In fact, there has been some examination of choices made in Medicare Part D,
suggesting that consumers do not necessarily
make choices in their own best interests: Beneficiaries fail to select plans that provide better
risk protection at lower cost.37 These findings are
consistent with earlier work on choice overload
and Medicare beneficiaries’ selection of health
plans.38 The findings led economist Paul
Krugman to exclaim that “‘consumer-based’
medicine has been a bust everywhere it has been
tried.”39
While it is wise to help patients make more
informed decisions about the costs of care and
to grow in their ability to make quality comparisons across health systems, the main driver of
health care costs is not consumer demand, but
rather the introduction of new technologies and
unwillingness on the part of US political leaders
to regulate prices—or at least use government
bargaining power as leverage to negotiate lower
prices. The US relies on a system of uncoordinated payment by thousands of payers, many of
which do not have the bargaining power necessary to drive down prices.40 This has resulted in
high prices for medical services.41 Technological
improvements in health care have driven increases in cost all over the world,42 but extraordinarily high prices and a refusal by government
to regulate them or bargain them lower differentiate the US from other countries.
Price Transparency Is A Good Goal,
But Not A Remedy For Spending Or
Quality Problems
Making costs and efficacy transparent to patients as part of the treatment decision-making
process makes the US health care system more
patient centered. It is helpful for patients to understand the cost implications of treatment alternatives and to discuss these with their providers
as part of shared decision making.
Patients do factor in out-of-pocket expenses
when thinking about the costs and benefits of
treatment alternatives, and many physicians
agree that this is a reasonable consideration.43
Such information should be presented to patients in a way that “combats common biases
and misperceptions—for example, explicitly
addressing people’s tendency to overweight
the probability of low-likelihood, high-cost
events.”44(p895)
Pursuing the sensible
goal of creating a
patient-centered
health system will
be undermined if
consumer metaphors
prevail.
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There is little evidence that offering price
transparency can reduce spending. Such proposals adopt the assumption that with transparency, patients are consumers who will “shop
around” for high-value providers whose use will
translate into substantial reductions in health
care spending.45 Price transparency is not a
“magic bullet,” and evidence suggests that “consumers do remarkably little comparison shopping in health care,”46(p786) while efforts to increase price transparency provide mixed
evidence—with most suggesting little or no decrease in costs.46,47 Price transparency could even
act to increase prices when providers sign contracts in which they agree not to charge lower
prices to other purchasers.46
The Consumer Metaphor Could
Erode Health Care Professionalism
In truly professional settings, physicians are free
to refuse to provide treatment that they believe
would be ineffective or harmful, even if patients
demand such treatment.48 Medical professionalism requires independent, discretionary judgment. Professionals do not simply do as they
are told or requested but must act on the basis
of knowledge, skill, and fiduciary obligations to
patients’ well-being.
Professional organizations resist the attitude
that “the customer is always right.” Such disputes can arise, for example, when terminally
ill patients or their families insist on cardiopulmonary resuscitation or other treatments that
their physicians believe would be harmful or ineffective.49 Hospitals must judge each case to find
the right balance between patient and family
preference and physician integrity. It seems
reasonable to anticipate that as the consumer
metaphor grows, physicians’ authority in these
kinds of cases could erode to the point where
they may become technicians doing what they
are asked to do, but doing so against their own
consciences.
Professionalism may also erode if physicians
are more inclined to offer unproven treatments
simply because patients demand them. If the
customer is always right, self-restraint on the
part of providers could erode. Responding to
consumers’ requests for unproven treatments
might not even seem like exploitation.
Conclusion
After four decades of organized patient advocacy, US patients are still struggling to influence
the health care decisions and policies that shape
their lives. Conflating consumer approaches
with authentically patient-centered approaches
will exacerbate this gap. In health care delivery
and health policy, a patient-centered approach
affirms the ethical principles of respect for persons and justice while striving to make the health
system more responsive to patients’ values and
preferences. There are some patient-centered
approaches, such as patient engagement and
activation, that yield substantial improvements
in health outcomes. Pursuing the sensible goal
of creating a patient-centered health system will
be undermined if consumer metaphors prevail.
It is important for policy makers and health
system leaders to be vigilant in distinguishing
between these seemingly similar, but different,
approaches. Patient-centered approaches aim to
ensure clinical care that can meet patients’ preferences and needs. That is different from a consumer orientation calling on patients to be prudent purchasers of medical care services. The
former approach empowers patients. The latter
expects patients to solve society’s cost-containment challenges. ▪
NOTES
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