Rationing of Health Care
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Rationing of Health Care
DAVID MECHANIC
Abstract
Rationing refers to the allocation of a scarce supply relative to need and demand. In
market-based economies, price typically establishes access to valued commodities
except when ethical values, norms, and technical limitations make it impossible to
allocate simply on the basis of price. Commonly recognized prototypes include allocation of scarce resources such as gasoline during war or currently in transplantation
where the number of available organs is insufficient to respond to need and there are
long waiting lists.
Medical care, even in countries that still depend on a marketplace model such as
the United States, is an expensive service substantially funded by government. The
availability and amount of services depend on government financing and its willingness to redistribute income through taxation. As the potentialities and costs of
medical care continue to escalate beyond economic growth throughout the world,
rationing is increasingly applied in distributing medical entitlement and resources.
Such rationing is evident at every level of organization from defining the scope of
health coverage to the allocation of care at the point of service.
Rationing can usefully be conceptualized as explicit (as in planned and defined allocations) to implicit when the norms are unclear and managers and clinicians use their
discretion in allocation. This review examines the range of rationing approaches and
dilemmas and how members of the public construe various rationing processes and
their understanding. It examines the many levels of rationing decisions, many that
are unrecognized, and how they are related to equity and social disparities of various
kinds.
INTRODUCTION
Rationing in its most narrow sense refers to the allocation of a scarce supply,
which makes it impossible to satisfy all wants or needs as occurred in the
distribution of many basic commodities during World War II. The topic deals
with how these commodities come to be distributed and the rules established
for doing so in terms of efficiency and equity. In the case of many commodities, resources, and services, it theoretically remains possible to increase the
supply if a source of public or private finance is able and willing to assume
the cost but this commonly is not economically or politically feasible, making
it inevitable that significant needs and wants remain unsatisfied.
Emerging Trends in the Social and Behavioral Sciences. Edited by Robert Scott and Stephen Kosslyn.
© 2015 John Wiley & Sons, Inc. ISBN 978-1-118-90077-2.
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
In health care, the most narrowly defined instances of rationing occur in
the transplantation of the kidney, heart, lung, liver, and pancreas where the
supply falls significantly short of need and many people die because of the
scarcity. However, even in such extreme instances, supply could at least theoretically be extended if policymakers were to overcome cultural, normative,
ideological, and ethical barriers in allowing a market for the sale of organs
or partial organs, garnering organs from persons executed around the world,
and other such socially restricted options.
While some analysts would restrict the medical concept of rationing to
what have been characterized as “tragic choices” as in decisions about organ
allocation (Calabresi & Bobbitt, 1978), more generally rationing refers to the
allocation and distribution of services or commodities to defined populations that are arbitrarily limited because of budget decisions, unwillingness
to increase taxes, limitations of facilities, personnel, and technologies and
their maldistribution, and related economic and social contingencies.
The American health care system, and its market system and market ideologies, offers special challenges even while government pays for at least half
of the health care provided. To the extent that health care is seen as a market,
no different than the market for food, housing, clothes, or any other commodity, issues of allocation beyond insufficient supply are seen by some as
no more than an issue of supply and demand and the capacities and willingness of individuals to purchase wanted health goods at the prevailing prices.
However, governments throughout the world, including the United States,
pay for the majority of health care through direct service provision (as in the
Veterans Administration, the Indian Health Service or Military Medicine),
sponsorship of care (as in the Federal Employees Health Benefits Program
or comparable state programs or federal community health centers), or mandated insurance (Affordable Care Act, ACA), and provide many different
subsidies for care to communities, hospitals, health systems, and special populations. Thus decisions by government, or its private and public intermediaries, determine who gets what and the allocation rules and administrative
strategies are important rationing influences. In all of the above systems and
programs, eligibility for coverage and obtaining services when needed are
governed by rationing decisions and strategies.
FOUNDATIONAL RESEARCH
In the United States, there are few issues as contentious in health policy as the
notion that a needed or desired health service would be withheld, particularly among the insured population. Throughout the history of health policy,
the suggestion that a proposed new policy or system modification would
“ration” care in some way, often used as a war cry by opponents, was
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powerful rhetoric undermining support for health care changes. The
backlash against managed care in the late 1990s (Mechanic, 2004) and the
continuing attacks on the Independent Payment Advisory Board (see Atlas,
2012; for a contrasting view, see Jost, 2010) a component of the ACA, are two
of many examples of political action and public opinion against arrangements that were alleged to ration care. When Republican legislators blocked
the confirmation of Obama nominee Donald Berwick as Administrator of
the Center for Medicare and Medicaid Services (CMS), their most frequent
complaint being that he supported rationing of care, an allegation he denied,
but which they inferred from a speech he had given praising the English
National Health Service (see Atlas, 2012).
With the continuing rapid development of medical science and new
medical technologies, and the increasing knowledge and sophistication of
the public, all medical systems face increases in health care costs, and the
displacement of other important public priorities, requiring strategies to
constrain cost growth. Many are struggling to identify how best to achieve
this while meeting the basic needs and demands of their populations. The
United States is an outlier, spending approximately twice as much for
health care as other developed nations and some 18% of its Gross National
Product. Nevertheless, the United States stands alone in its failure to achieve
universal coverage and the large gaps in access among varying subgroups
in the population. Given the structure of American government and its
politics, the United States has particular difficulty in constraining health
care costs (Mechanic, 2006).
The ACA moves substantially in the direction of universal and more comprehensive coverage, but the United States also faces a significant challenge
of restraining health care growth, especially in public programs in light of a
large federal deficit, strong political ideologies, powerful industry and professional interests, and a demanding population. There is little agreement
on how to contain costs successfully although the ACA includes, through
incentives and demonstrations, a wide range of financial and organizational
reforms allegedly able to achieve this while maintaining and even enhancing
access and quality of care.
Health care rationing in its broader sense is ubiquitous, but the public
generally only perceives some types of distribution as rationed. The concepts
of explicit and implicit rationing help elucidate these perceptions (Mechanic,
1979). To the extent that patients live in a market system, they take for
granted that their economic resources may limit access to specialists or the
most expensive practitioners, that the less costly insurance they acquire may
not cover many important services, that long waiting times in the facilities
they use may be inevitable, and that medical encounters will be short and
amenities few. To the average person, this is just the way things are.
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
Patients experience care as rationed, not when it is embodied in familiar
patterns of care, but when it is “in their face” and when denial of care is
explicit. The extraordinary backlash in the managed care arrangements that
followed the failure of the Clinton health reforms was due to many factors
(Mechanic, 2004), but not least among them explicit denial of care when
the patient’s physician recommended it by an administrative authority
such as a utilization reviewer. Patients were particularly unhappy that
they had to seek their health plan’s permission for procedures they or their
doctors thought essential. The same decision-making made by physicians
in their everyday care would ordinarily arouse little opposition. This is now
complicated by the Internet and media coverage of medical treatments,
direct-to-consumer advertising, and increased awareness that one’s doctors
may be compromised by conflicts of interest and administrative controls.
However, to the extent that allocation decisions are embedded in patterns
of care (that is, they are implicit), they typically are less problematic. The
evidence reveals great variations in such decisions, particularly under
clinical uncertainty, such as medications chosen, decisions for inpatient
admission, surgical interventions, frequency of consultations, length of
encounters, length of treated episodes, and waiting times among others
(Aday, 2001; Wennberg, 2010).
Explicit rationing is most dramatic and controversial at the point of service,
but explicit rationing typically occurs at administrative and managerial levels far from the point of clinical care. Health care can include potentially a
large range of services and health insurance design establishes what will be
covered. There is substantial variation among countries (Payer, 1996), and
among health insurance programs in the United States, in what is covered
from treatment in spas for rehabilitation to various forms of psychosocial
care. Only with the passage of the ACA did mental health and substance
abuse become essential services required in all insurance programs in the
United States, and many types of care continue to be excluded commonly
such as long-term care that is not rehabilitative, dentistry, and many other
services used by large proportions of the population. Some types of coverage in public programs are controversial less for financial reasons than
for political or religious reasons such as contraception and most persistently
abortion services. Explicit determinations ration not only who can be covered
(e.g., nonlegal immigrants in public programs) and what is covered (such
as in vitro fertilization, substance abuse services, specialized cancer medications, or psychoanalysis), but also by the cost-sharing specifications that
make some services more readily available and affordable. Some health systems such as the English National Health Service do not explicitly define
the services covered or excluded nor do guarantee coverage for the population beyond what the allocated budget allows. In this instance, rationing is
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determined by the established budgetary ceiling with much decision-making
about care allocation implicit.
What people get under such conditions depend on how the budget is allocated among varying geographic areas and decisions about funding hospitals, clinics, health centers, and other facilities and their accessibility to the
population. Rationing also results from the decisions made on how funding
is allocated within medical organizations such as to specialty versus primary
care, hospital versus ambulatory capacity, and the trade-offs made in funding particular services or types of specialty care. These also constitute explicit
rationing decisions but usually do not approach the level of passion seen at
the point of service when what is believed to be a life-saving intervention is
unavailable or denied.
TRAGIC CHOICES
Calabresi and Bobbitt (1978) introduced the concept of “tragic choices” in
the allocation of limited opportunities to obtain a life-saving therapy as in
the transplantation of organs where needs far exceed the numbers of organs
available and where many die waiting. In these dramatic situations of life
and death, advanced countries have developed explicit systems of allocation that designate who in the queue has precedence, but many competing
values are operative and there is no right decision. A classic study in 1984 on
renal dialysis and other significant treatments in the United States and Britain
found that treatment rates were significantly lower in the United Kingdom
with very large disparities by age compared to the United States (Aaron &
Schwartz, 1984). Such issues became salient first with the development of
the artificial kidney and the establishment of the first renal dialysis unit at
the University of Washington Medical School in the early 1960s. The capability to provide hemodialysis was small and only a few of the large number
of persons who could benefit could be given access. In theory, a fair process
would select by lottery from among those who met comparable medical qualifications, but lotteries are unpopular in these life and death situations and
not accepted by the public. In contrast, a community committee was established to select recipients (Alexander, 1962) and the socially biased selection
criteria used resulted in media attention, dissatisfaction, and public debate.
Over time technological advances and public financing made dialysis for
end-stage renal disease universal.
Organ transplantation has posed similar challenges. The US Congress
enacted legislation in 1984 establishing the Organ Procurement and Transplantation Network (OPTN) to be administered nationally by a private
nonprofit organization, United Network for Organ Sharing (UNOS). UNOS
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developed computer algorithms in conjunction with procurement organizations at the local level and transplant centers throughout the nation, to
direct access to an available organ among patients on various waiting lists.
After considering such factors as tissue match, blood type, time waiting,
and medical urgency, a number of normative and pragmatic issues come
into play. The United States is divided into some 58 donor service areas each
having an organ procurement organization covering from 3 to 10 million
population (Leichtman, McCullough, & Wolfe, 2011). Organs are first offered
to local transplant centers both because organs can spoil quickly in transport
and because it is believed that serving the local area reinforces motivation
to aggressively obtain donations, a form of geographic favoritism that some
take exception to (University of Missouri Center for Health Ethics, 2011).
There are in fact a variety of nonmedical values that become relevant in
the distribution of organs including the availability of health insurance to
cover transplant services in many instances, the age of recipients where
persons aged 75 or older usually are not considered and preference is
often advocated for the young who are likely to have a greater number of
potential quality-adjusted life years remaining. Other considerations that are
sometimes operative are “worthiness” as reflected in previous damaging life
styles such as substance abuse, a criminal record, developmental disabilities,
noncitizenship, and legal status (Caplan, 2008). Some of these exclusions
may be treated as medical issues based on assumptions of capacity to adhere
to medical regimen, although these judgments are not necessarily consistent
with evidence (see, e.g., Walkup, Sambamoorthi, & Crystal, 2001). Other
rules facilitate favoritism such as allowing patients to have multiple transplant center enrollments, an expensive option because of repeated workups,
primarily available to the affluent. An area of particular tension involves
trade-offs between efficiency and equity, where the former emphasis is on
assuring the largest number of life years saved for the supply of organs
(Caplan, 2008; University of Missouri Center for Health Ethics, 2011).
Kidney transplantation has received the most sustained examination with
waiting lists approaching 100,000 and kidney availability for <20% of those
waiting. Moreover, given the wide range of donors with kidneys varying in
quality and the complexity of the distribution system, the number of wasted
organs has been increasing because of inefficient distribution (Sack, 2012). As
John Friedewald, chair of the OPTN/UNOS Kidney Transplantation Committee has noted, “We can get thousands of extra life years out of the current
supply of organs. But in each instance, we have made concessions in the name
of equity … we are trying to keep those really long lived organs for those who
stand to benefit from them a long time. And by doing that, we can realize all
those extra life years lived” (Friedewald, 2012).
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The system for allocating kidneys from deceased donors has been
fine-tuned in an iterative fashion over the years; however in December 2014,
UNOS instituted significant changes to respond to a range of problems
from inefficiencies in allocation to alleged gaming by transplant centers. The
detailed changes are explained in reports and videos available on the OPTN
website (Organ Procurement and Transplantation Network, 2014). These
proposals are complex but essentially would divide the donor kidneys
on the basis of a Kidney Donor Profile Index (KDPI), a clinical formula
estimating the length of time the transplanted kidney is likely to function
into two groups, the top 20% and the remaining 80%. Similarly, transplant
candidates would be classified by an estimated posttransplant survival score
(EPTS) clinically estimating duration of survival after transplantation. They
too would be divided into the top 20% and the remaining 80%, with the
best 20% of kidneys allocated to the 20% of recipients with the best survival
prospects. The remaining 80% of kidneys would go to those on the local
waiting list and if not appropriate medically would then be allocated first to
other candidates in the region and then if not accepted to national candidates
(Hippen, Thistlethwaite, & Ross, 2011; Leichtman et al., 2011). Concerns
about these recommendations include the unreliability of the KDPI and
EPTS and the likelihood of clinician preference influencing these scores as
medical judgment plays a significant part, and worry that live donors might
be deterred, a concern particularly in the case of children who are most
likely to attract live donorship but who could fare well under these new
allocation criteria (Hippen et al., 2011). While OPTN/UNOS is an impressively thoughtful approach, it cannot resolve the inherent conflict between
efficiency and equity and in this sense decisions remain “tragic choices.”
FURTHER RESEARCH AND ANALYSIS
RATIONING INHERENT IN SYSTEMS OF CARE
Explicit rationing decisions are made at every level of decision-making.
Depending on the role of government, expenditures for training of personnel, the construction and placement of facilities, and other important
infrastructure such as information technology are planned and budgeted.
In more private systems such as in the United States, such decisions derive
from advocates and private or nonprofit actors influenced by the availability
of governmental grants and financial and other incentives. Such mundane
appearing policy decisions as definitions of essential health services to
be covered, eligible treatments, permissible reimbursable providers, and
administrative rules on conditions of service importantly establish who
will be treated and how. These explicit decisions are compounded at every
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
level of administration and service. Managers at every medical facility must
decide how to allocate their budgets and personnel. Hospital administrators
must decide the resources devoted to departments such as emergency care,
trauma care, burn units, behavioral services, and much more. They also
usually must design the scheduling of work, the intensity of services, time
allocated per encounter, the size of allowable queues and acceptable waiting
times, the number and availability of surgical suites, and the like. Such
operational decisions as the intensity of nursing service on different service
units are significantly associated with important outcomes such as mortality
(Aiken, Clarke, Sloane, Sochalski, & Silber, 2002; Needleman et al., 2011). In
a competitive market, hospitals may narrow their activities to services most
remunerative (such as specialty hospitals), locate in suburban areas with
few persons in poverty, or avoid functions that often operate at a financial
loss such as emergency care, burn units, and mental health services.
Much of the rationing that occurs in health systems arise from these
managerial decisions. Klein, Day, and Redmayne (1996), for example, have
elucidated a range of rationing strategies that would not necessarily be
seen as rationing by those affected. Among these strategies are denial,
as when particular services are refused when not covered by a particular
insurance arrangement; rationing by selection as when patients are chosen
by the likelihood of success, willingness to pay more, or personal influence;
rationing by deflection, such as referral motivated to get rid of bothersome
or difficult patients; rationing by deterrence, as when various barriers are
placed on access to services such as long waiting times, unresponsive phone
systems, unpleasant and uncomfortable surroundings, and discourteous
staff; rationing by dilution, as when encounter time is reduced or unnecessary repeated visits are required to complete the service; and rationing by
termination as when clients seeking further help are told that no more can
be done for them.
Much of the emotion surrounding rationing is evident when rationing
occurs at the point of clinical care and when some service believed to be valuable is withheld. Many countries have had commissions and professional
work groups to devise appropriate rationing rules but generally their products are too abstract and removed from the realities of care to be useful at
the point of service (Sabik & Lie, 2008). Many medical ethicists seek explicit
and transparent principles for such decisions (Daniels, 2008; Daniels &
Sabin, 2002), but it can be argued that the great variability of patients, life
circumstances, cultural differences, personal preferences, and the trajectory
of illness itself make clinical discretion (implicit rationing) better suited to
realistic contingencies at the point of service (Mechanic, 1995, 1997).
Perhaps the most explicit effort to establish a rationing approach was the
Oregon Health Plan (OHP), designed to increase the number of enrollees
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under its Medicaid program within a highly constrained budget, by devising
a system to establish a hierarchy from the most basic and necessary care to
less effective and less useful interventions (U.S. Congress, Office of Technology Assessment, 1992). After a number of advisory groups and public meetings, health professionals prioritized some 700 treatment condition/pairs by
efficacy and other community values using various types of data. After the
initial ranking, there were some obvious aberrations, for example, tooth capping had higher priority than surgery for ectopic pregnancy or appendectomy. Following much criticism, the rankings were readjusted by clinicians
on the basis of professional experience. Initially, it was established that the
budget was only sufficient to fund the highest 588 treatment/condition pairs,
but it was expected that each year the service line would be adjusted depending on the budget.
The OHP effort received enormous attention around the world as well as in
the United States. Implemented in 1994, the approach was to extend Medicaid coverage to an additional 320,000 enrollees. But contrary to much of the
public discussion, the ability to do this came from enhanced state funding
due to an upturn in the economy and the growing dependence on managed
care. Moreover, not only did the list not ration care to any appreciable extent
but in fact provided a more generous set of benefits than were available in the
prior Medicaid program. There were loopholes as well that allowed physicians to provide services below the cutting point if patients had conditions
needing treatment for treatment/pairs above the line (Leichter, 1999). Finally,
as most patients were capitated within HMOs, physicians had discretion to
provide whatever care they deemed necessary whether above or below the
line. An interesting analysis by Jacobs, Marmor, and Oberlander (1999) saw
OHP as more a political than rationing strategy to increase investments in
health by bringing greater awareness of need to the public and the legislature.
As the years have gone by, it is clear that the key driving influence on what
care is and is not provided is the state economic environment and funding for
the Medicaid program. Oregon has faced some very difficult budgetary years
requiring cutbacks in coverage and increased co-payments in their Medicaid
program, leading to significant disenrollment among the poor.
TENSIONS BETWEEN EQUITY AND RESCUE
In the early debates over the treatment/condition pairs in Oregon, a major
criticism of the initial list was the failure to acknowledge the rule of rescue
that gives high priority to the saving of identifiable lives when such possibilities are evident (Hadorn, 1991). For example, tooth capping was given greater
priority than surgery for ectopic pregnancy or appendectomy, which could
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
save lives. Public health practitioners and cost-effectiveness analysts are typically attuned to interventions that save or enhance statistical lives whether
through prevention or careful planning of treatment, but the public, and
often policy makers as well, respond to the poignancy of identified individual cases, allowing individual campaigns and disease advocates to skillfully
use the media to encourage disproportionate resources to their cause
(Daniels, 2012; Largent & Pearson, 2012). Major national health policies have
been made, such as the initially unique eligibility of coverage for persons
with end-stage renal disease treatment within Medicare, in part by staging
individual patients and treatments before the key congressional committee
(Rettig, 1991). Infant mortality rates and case fatality rates often appear to
be less persuasive than presentation of an attractive patient whose survival
requires a particular type of treatment. Many advocacy groups have developed impressive expertise in mobilizing emotional commitment to their
cause in ways that appear to violate norms of equity and cost-effectiveness.
KEY ISSUES FOR RESEARCH
Over the years there have been allegations that these inclinations to think in
terms of known individuals in contrast to aggregate disease burden result
in a discordance between health care investment and the true burden of
disease. Health research is also rationed with a majority of meritorious
projects as judged by peers remaining unfunded. Observers point to the
impressive success of advocacy for specific diseases such as HIV/AIDS
(Gould, 2009), breast cancer (Lerner, 2001), and end-stage renal disease
(Rettig, 1991), relative, for example, to other cancers, behavioral health, and
most orphan diseases (Largent & Pearson, 2012). Discussion has focused on
funding patterns of the National Institutes of Health (NIH), the largest health
funding agency in the United States, for which there are data amenable to
research, but even these data and their underlying classifications are elusive.
Researchers have reported a range of conclusions about the discordance
between disease burden and funding patterns (Sampat, Buterbaugh, & Perl,
2013). Using a new NIH data system, the Research, Condition, and Disease
Categorization System introduced in 2008, Sampat et al. (2013) examined in
a variety of ways the association between burden as measured by mortality
and by hospitalization and NIH funding. Contrary to popular stereotype
and anecdote, they found a reasonable correspondence between these measures. They estimate, for example, that deaths account for 54% of funding
variation with similar estimates for hospitalization. This, of course, leaves
a great deal of variation that requires explanation. These data are only a
yearly cross-section and require more extended longitudinal analysis as new
patterns of funding evolve. As NIH funding grows more slowly and is even
more constrained, the debate about allocation will become more contentious.
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Research in access to care and expenditure patterns document vast disparities by geography, urban and rural living, and residence as well as by race,
ethnicity, gender, socioeconomic status, and immigrant status. Such disparities are large and persistent (Aday, 2001; Sampson, 2012). Such disparities
and their consequences result from a multiplicity of biopsychosocial determinants and not directly by rationing. However, the same determinants of many
of these disparities, such as access to information, resources, and influential
social networks (Link & Phelan, 2010), also illuminate the extent of exposure to rationing and its effects. Nevertheless, these two large research areas
and literatures are almost completely parallel, with little mutual awareness
and almost no linkage. Yet, many of the major social determinants of health
are linked to the burdens of rationing, where access to limited resources are
affected by many of the same social determinants of social status, power and
influence, information, and the availability of social networks. There is need,
both theoretically and empirically, to blend these important endeavors to
understand how social determinants shape where, when, and how rationing
magnifies social inequalities.
There remain too few microstudies on how rationing policies are devised
and implemented at different levels of the health care system from the explicit
managerial decisions made by legislatures, administrators, and insurance
executives to the provision of services at the clinical level. However, there
are many relevant studies in varying disciplines and subareas of research
that have never been brought together in a meaningful way or tied usefully
to larger theoretical concerns although there have been some early commendable attempts (Elster, 1992; Klein et al., 1996).
Rationing, however conceptualized and whatever we call it, will have
increasing importance in health care in modern nations as technological
possibilities outpace economic growth. Already, health expenditures are
squeezing other important social priorities in many advanced countries,
some with greater importance to health than the provision of health services.
Establishing how to reign in health care costs is now one of the most
important challenges of social policy and one where social and behavioral
science have much to contribute.
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Mechanic, D. (1979). Future issues in health care: Social policy and the rationing of medical
services. New York, NY: The Free Press.
Mechanic, D. (1995). Dilemmas in rationing health care services: the case for
implicit rationing. British Medical Journal, 310, 1655–1659. doi:10.1136/bmj.310.
6995.1655
Mechanic, D. (1997). Muddling through elegantly: Finding the proper balance in
rationing. Health Affairs, 16, 83–92. doi:10.1377/hlthaff.16.5.83
Mechanic, D. (2004). The rise and fall of managed care. Journal of Health and Social
Behavior, 45, 76–86.
Mechanic, D. (2006). The truth about health care: Why reform is not working in America.
New Brunswick, NJ: Rutgers University Press.
Needleman, J., Buerhaus, P., Pankratz, V. S., Leibson, C. L., Stevens, S. R., & Harris,
M. (2011). Nurse staffing and inpatient hospital mortality. New England Journal of
Medicine, 364, 1037–1045. doi:10.1056/NEJMsa1001025
Organ Procurement and Transplantation Network (2014). Kidney allocation system.
Retrieved from http://optn.transplant.hrsa.gov/learn/professional-education/
Kidney-allocation-system
Payer, L. (1996). Medicine and culture (revised ed.). New York, NY: Henry Holt and
Company.
Rettig, R. A. (1991). Origins of the Medicare kidney disease entitlement: The Social
Security amendments of 1972. In K. E. Hanna (Ed.), Biomedical politics. Washington,
DC: National Academies Press.
Sabik, L. M., & Lie, R. K. (2008). Priority setting in health care: Lessons from the
experiences of eight countries. International Journal of Equity Health, 7, 4.
Sack, K. (2012). In discarding of kidneys, system reveals its flaws. New York
Times, September 19. Retrieved from http://www.nytimes.com/2012/09/20/
health/transplant-experts-blame-allocation-system-for-discarding-kidneys.html?
pagewanted=all&_r=0
Sampat, B. N., Buterbaugh, K., & Perl, M. (2013). New evidence on the allocation
of NIH funds across diseases. Milbank Quarterly, 91, 163–185. doi:10.1111/milq.
12005
Sampson, R. J. (2012). Great American city: Chicago and the enduring neighborhood effect.
Chicago, IL: University of Chicago Press.
U.S. Congress, Office of Technology Assessment (1992). Evaluation of the Oregon
Medicaid proposal, OTA-H-531. Washington, DC: U.S. Government Printing Office.
Retrieved from http://ota.fas.org/reports/9213.pdf
University of Missouri Center for Health Ethics (2011). Organ transplantation.
Retrieved from http://ethics.missouri.edu/Organ-Transplantation.aspx
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Walkup, J., Sambamoorthi, U., & Crystal, S. (2001). Incidence and consistency of
antiretroviral use among HIV-infected Medicaid beneficiaries with schizophrenia.
Journal of Clinical Psychiatry, 62, 174–178.
Wennberg, J. E. (2010). Tracking medicine: A researcher’s quest to understand health care.
New York, NY: Oxford University Press.
DAVID MECHANIC SHORT BIOGRAPHY
David Mechanic is the René Dubos University Professor of Behavioral
Sciences and served as Director of the Institute for Health, Health Care
Policy, and Aging Research at Rutgers University (1985–2013). He is the
author of more than 400 publications, including The Truth About Health Care:
Why Reform is Not Working in America; Inescapable Decisions: The Imperatives of
Health Reform, and Mental Health and Social Policy: Beyond Managed Care (sixth
edition). Dr. Mechanic is a member of the National Academy of Sciences, the
American Academy of Arts and Sciences, and the Institute of Medicine, and
has received numerous awards, including the Rhoda and Bernard Sarnat
International Prize in Mental Health from the Institute of Medicine, the
Distinguished Career Award for the Practice of Sociology and the Lifetime
Contributions Award in Mental Health from the American Sociological
Association, the Rema Lapouse Award and the First Carl Taube Award
for Distinguished Contributions to Mental Health Services Research from
the American Public Health Association, and the Baxter Health Services
Research Prize. Dr. Mechanic received his doctorate in sociology from
Stanford University.
RELATED ESSAYS
Telomeres (Psychology), Nancy Adler and Aoife O’Donovan
Inefficiencies in Health Care Provision (Economics), James F. Burgess et al.
Immigrant Health Paradox (Sociology), Kyriakos S. Markides and Sunshine
Rote
Organizations and the Production of Systemic Risk (Sociology), Charles
Perrow
Health and Social Inequality (Sociology), Bernice A. Pescosolido
Social Relationships and Health in Older Adulthood (Psychology), Theodore
F. Robles and Josephine A. Menkin
The Role of Cultural, Social, and Psychological Factors in Disease and Illness
(Sociology), Robert A. Scott
The Institutional Logics Perspective (Sociology), Patricia H. Thornton et al.
AIDS and Social Networks (Sociology), Alexander Weinreb et al.
Incarceration and Health (Sociology), Christopher Wildeman
-
Rationing of Health Care
DAVID MECHANIC
Abstract
Rationing refers to the allocation of a scarce supply relative to need and demand. In
market-based economies, price typically establishes access to valued commodities
except when ethical values, norms, and technical limitations make it impossible to
allocate simply on the basis of price. Commonly recognized prototypes include allocation of scarce resources such as gasoline during war or currently in transplantation
where the number of available organs is insufficient to respond to need and there are
long waiting lists.
Medical care, even in countries that still depend on a marketplace model such as
the United States, is an expensive service substantially funded by government. The
availability and amount of services depend on government financing and its willingness to redistribute income through taxation. As the potentialities and costs of
medical care continue to escalate beyond economic growth throughout the world,
rationing is increasingly applied in distributing medical entitlement and resources.
Such rationing is evident at every level of organization from defining the scope of
health coverage to the allocation of care at the point of service.
Rationing can usefully be conceptualized as explicit (as in planned and defined allocations) to implicit when the norms are unclear and managers and clinicians use their
discretion in allocation. This review examines the range of rationing approaches and
dilemmas and how members of the public construe various rationing processes and
their understanding. It examines the many levels of rationing decisions, many that
are unrecognized, and how they are related to equity and social disparities of various
kinds.
INTRODUCTION
Rationing in its most narrow sense refers to the allocation of a scarce supply,
which makes it impossible to satisfy all wants or needs as occurred in the
distribution of many basic commodities during World War II. The topic deals
with how these commodities come to be distributed and the rules established
for doing so in terms of efficiency and equity. In the case of many commodities, resources, and services, it theoretically remains possible to increase the
supply if a source of public or private finance is able and willing to assume
the cost but this commonly is not economically or politically feasible, making
it inevitable that significant needs and wants remain unsatisfied.
Emerging Trends in the Social and Behavioral Sciences. Edited by Robert Scott and Stephen Kosslyn.
© 2015 John Wiley & Sons, Inc. ISBN 978-1-118-90077-2.
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
In health care, the most narrowly defined instances of rationing occur in
the transplantation of the kidney, heart, lung, liver, and pancreas where the
supply falls significantly short of need and many people die because of the
scarcity. However, even in such extreme instances, supply could at least theoretically be extended if policymakers were to overcome cultural, normative,
ideological, and ethical barriers in allowing a market for the sale of organs
or partial organs, garnering organs from persons executed around the world,
and other such socially restricted options.
While some analysts would restrict the medical concept of rationing to
what have been characterized as “tragic choices” as in decisions about organ
allocation (Calabresi & Bobbitt, 1978), more generally rationing refers to the
allocation and distribution of services or commodities to defined populations that are arbitrarily limited because of budget decisions, unwillingness
to increase taxes, limitations of facilities, personnel, and technologies and
their maldistribution, and related economic and social contingencies.
The American health care system, and its market system and market ideologies, offers special challenges even while government pays for at least half
of the health care provided. To the extent that health care is seen as a market,
no different than the market for food, housing, clothes, or any other commodity, issues of allocation beyond insufficient supply are seen by some as
no more than an issue of supply and demand and the capacities and willingness of individuals to purchase wanted health goods at the prevailing prices.
However, governments throughout the world, including the United States,
pay for the majority of health care through direct service provision (as in the
Veterans Administration, the Indian Health Service or Military Medicine),
sponsorship of care (as in the Federal Employees Health Benefits Program
or comparable state programs or federal community health centers), or mandated insurance (Affordable Care Act, ACA), and provide many different
subsidies for care to communities, hospitals, health systems, and special populations. Thus decisions by government, or its private and public intermediaries, determine who gets what and the allocation rules and administrative
strategies are important rationing influences. In all of the above systems and
programs, eligibility for coverage and obtaining services when needed are
governed by rationing decisions and strategies.
FOUNDATIONAL RESEARCH
In the United States, there are few issues as contentious in health policy as the
notion that a needed or desired health service would be withheld, particularly among the insured population. Throughout the history of health policy,
the suggestion that a proposed new policy or system modification would
“ration” care in some way, often used as a war cry by opponents, was
Rationing of Health Care
3
powerful rhetoric undermining support for health care changes. The
backlash against managed care in the late 1990s (Mechanic, 2004) and the
continuing attacks on the Independent Payment Advisory Board (see Atlas,
2012; for a contrasting view, see Jost, 2010) a component of the ACA, are two
of many examples of political action and public opinion against arrangements that were alleged to ration care. When Republican legislators blocked
the confirmation of Obama nominee Donald Berwick as Administrator of
the Center for Medicare and Medicaid Services (CMS), their most frequent
complaint being that he supported rationing of care, an allegation he denied,
but which they inferred from a speech he had given praising the English
National Health Service (see Atlas, 2012).
With the continuing rapid development of medical science and new
medical technologies, and the increasing knowledge and sophistication of
the public, all medical systems face increases in health care costs, and the
displacement of other important public priorities, requiring strategies to
constrain cost growth. Many are struggling to identify how best to achieve
this while meeting the basic needs and demands of their populations. The
United States is an outlier, spending approximately twice as much for
health care as other developed nations and some 18% of its Gross National
Product. Nevertheless, the United States stands alone in its failure to achieve
universal coverage and the large gaps in access among varying subgroups
in the population. Given the structure of American government and its
politics, the United States has particular difficulty in constraining health
care costs (Mechanic, 2006).
The ACA moves substantially in the direction of universal and more comprehensive coverage, but the United States also faces a significant challenge
of restraining health care growth, especially in public programs in light of a
large federal deficit, strong political ideologies, powerful industry and professional interests, and a demanding population. There is little agreement
on how to contain costs successfully although the ACA includes, through
incentives and demonstrations, a wide range of financial and organizational
reforms allegedly able to achieve this while maintaining and even enhancing
access and quality of care.
Health care rationing in its broader sense is ubiquitous, but the public
generally only perceives some types of distribution as rationed. The concepts
of explicit and implicit rationing help elucidate these perceptions (Mechanic,
1979). To the extent that patients live in a market system, they take for
granted that their economic resources may limit access to specialists or the
most expensive practitioners, that the less costly insurance they acquire may
not cover many important services, that long waiting times in the facilities
they use may be inevitable, and that medical encounters will be short and
amenities few. To the average person, this is just the way things are.
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
Patients experience care as rationed, not when it is embodied in familiar
patterns of care, but when it is “in their face” and when denial of care is
explicit. The extraordinary backlash in the managed care arrangements that
followed the failure of the Clinton health reforms was due to many factors
(Mechanic, 2004), but not least among them explicit denial of care when
the patient’s physician recommended it by an administrative authority
such as a utilization reviewer. Patients were particularly unhappy that
they had to seek their health plan’s permission for procedures they or their
doctors thought essential. The same decision-making made by physicians
in their everyday care would ordinarily arouse little opposition. This is now
complicated by the Internet and media coverage of medical treatments,
direct-to-consumer advertising, and increased awareness that one’s doctors
may be compromised by conflicts of interest and administrative controls.
However, to the extent that allocation decisions are embedded in patterns
of care (that is, they are implicit), they typically are less problematic. The
evidence reveals great variations in such decisions, particularly under
clinical uncertainty, such as medications chosen, decisions for inpatient
admission, surgical interventions, frequency of consultations, length of
encounters, length of treated episodes, and waiting times among others
(Aday, 2001; Wennberg, 2010).
Explicit rationing is most dramatic and controversial at the point of service,
but explicit rationing typically occurs at administrative and managerial levels far from the point of clinical care. Health care can include potentially a
large range of services and health insurance design establishes what will be
covered. There is substantial variation among countries (Payer, 1996), and
among health insurance programs in the United States, in what is covered
from treatment in spas for rehabilitation to various forms of psychosocial
care. Only with the passage of the ACA did mental health and substance
abuse become essential services required in all insurance programs in the
United States, and many types of care continue to be excluded commonly
such as long-term care that is not rehabilitative, dentistry, and many other
services used by large proportions of the population. Some types of coverage in public programs are controversial less for financial reasons than
for political or religious reasons such as contraception and most persistently
abortion services. Explicit determinations ration not only who can be covered
(e.g., nonlegal immigrants in public programs) and what is covered (such
as in vitro fertilization, substance abuse services, specialized cancer medications, or psychoanalysis), but also by the cost-sharing specifications that
make some services more readily available and affordable. Some health systems such as the English National Health Service do not explicitly define
the services covered or excluded nor do guarantee coverage for the population beyond what the allocated budget allows. In this instance, rationing is
Rationing of Health Care
5
determined by the established budgetary ceiling with much decision-making
about care allocation implicit.
What people get under such conditions depend on how the budget is allocated among varying geographic areas and decisions about funding hospitals, clinics, health centers, and other facilities and their accessibility to the
population. Rationing also results from the decisions made on how funding
is allocated within medical organizations such as to specialty versus primary
care, hospital versus ambulatory capacity, and the trade-offs made in funding particular services or types of specialty care. These also constitute explicit
rationing decisions but usually do not approach the level of passion seen at
the point of service when what is believed to be a life-saving intervention is
unavailable or denied.
TRAGIC CHOICES
Calabresi and Bobbitt (1978) introduced the concept of “tragic choices” in
the allocation of limited opportunities to obtain a life-saving therapy as in
the transplantation of organs where needs far exceed the numbers of organs
available and where many die waiting. In these dramatic situations of life
and death, advanced countries have developed explicit systems of allocation that designate who in the queue has precedence, but many competing
values are operative and there is no right decision. A classic study in 1984 on
renal dialysis and other significant treatments in the United States and Britain
found that treatment rates were significantly lower in the United Kingdom
with very large disparities by age compared to the United States (Aaron &
Schwartz, 1984). Such issues became salient first with the development of
the artificial kidney and the establishment of the first renal dialysis unit at
the University of Washington Medical School in the early 1960s. The capability to provide hemodialysis was small and only a few of the large number
of persons who could benefit could be given access. In theory, a fair process
would select by lottery from among those who met comparable medical qualifications, but lotteries are unpopular in these life and death situations and
not accepted by the public. In contrast, a community committee was established to select recipients (Alexander, 1962) and the socially biased selection
criteria used resulted in media attention, dissatisfaction, and public debate.
Over time technological advances and public financing made dialysis for
end-stage renal disease universal.
Organ transplantation has posed similar challenges. The US Congress
enacted legislation in 1984 establishing the Organ Procurement and Transplantation Network (OPTN) to be administered nationally by a private
nonprofit organization, United Network for Organ Sharing (UNOS). UNOS
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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
developed computer algorithms in conjunction with procurement organizations at the local level and transplant centers throughout the nation, to
direct access to an available organ among patients on various waiting lists.
After considering such factors as tissue match, blood type, time waiting,
and medical urgency, a number of normative and pragmatic issues come
into play. The United States is divided into some 58 donor service areas each
having an organ procurement organization covering from 3 to 10 million
population (Leichtman, McCullough, & Wolfe, 2011). Organs are first offered
to local transplant centers both because organs can spoil quickly in transport
and because it is believed that serving the local area reinforces motivation
to aggressively obtain donations, a form of geographic favoritism that some
take exception to (University of Missouri Center for Health Ethics, 2011).
There are in fact a variety of nonmedical values that become relevant in
the distribution of organs including the availability of health insurance to
cover transplant services in many instances, the age of recipients where
persons aged 75 or older usually are not considered and preference is
often advocated for the young who are likely to have a greater number of
potential quality-adjusted life years remaining. Other considerations that are
sometimes operative are “worthiness” as reflected in previous damaging life
styles such as substance abuse, a criminal record, developmental disabilities,
noncitizenship, and legal status (Caplan, 2008). Some of these exclusions
may be treated as medical issues based on assumptions of capacity to adhere
to medical regimen, although these judgments are not necessarily consistent
with evidence (see, e.g., Walkup, Sambamoorthi, & Crystal, 2001). Other
rules facilitate favoritism such as allowing patients to have multiple transplant center enrollments, an expensive option because of repeated workups,
primarily available to the affluent. An area of particular tension involves
trade-offs between efficiency and equity, where the former emphasis is on
assuring the largest number of life years saved for the supply of organs
(Caplan, 2008; University of Missouri Center for Health Ethics, 2011).
Kidney transplantation has received the most sustained examination with
waiting lists approaching 100,000 and kidney availability for <20% of those
waiting. Moreover, given the wide range of donors with kidneys varying in
quality and the complexity of the distribution system, the number of wasted
organs has been increasing because of inefficient distribution (Sack, 2012). As
John Friedewald, chair of the OPTN/UNOS Kidney Transplantation Committee has noted, “We can get thousands of extra life years out of the current
supply of organs. But in each instance, we have made concessions in the name
of equity … we are trying to keep those really long lived organs for those who
stand to benefit from them a long time. And by doing that, we can realize all
those extra life years lived” (Friedewald, 2012).
Rationing of Health Care
7
The system for allocating kidneys from deceased donors has been
fine-tuned in an iterative fashion over the years; however in December 2014,
UNOS instituted significant changes to respond to a range of problems
from inefficiencies in allocation to alleged gaming by transplant centers. The
detailed changes are explained in reports and videos available on the OPTN
website (Organ Procurement and Transplantation Network, 2014). These
proposals are complex but essentially would divide the donor kidneys
on the basis of a Kidney Donor Profile Index (KDPI), a clinical formula
estimating the length of time the transplanted kidney is likely to function
into two groups, the top 20% and the remaining 80%. Similarly, transplant
candidates would be classified by an estimated posttransplant survival score
(EPTS) clinically estimating duration of survival after transplantation. They
too would be divided into the top 20% and the remaining 80%, with the
best 20% of kidneys allocated to the 20% of recipients with the best survival
prospects. The remaining 80% of kidneys would go to those on the local
waiting list and if not appropriate medically would then be allocated first to
other candidates in the region and then if not accepted to national candidates
(Hippen, Thistlethwaite, & Ross, 2011; Leichtman et al., 2011). Concerns
about these recommendations include the unreliability of the KDPI and
EPTS and the likelihood of clinician preference influencing these scores as
medical judgment plays a significant part, and worry that live donors might
be deterred, a concern particularly in the case of children who are most
likely to attract live donorship but who could fare well under these new
allocation criteria (Hippen et al., 2011). While OPTN/UNOS is an impressively thoughtful approach, it cannot resolve the inherent conflict between
efficiency and equity and in this sense decisions remain “tragic choices.”
FURTHER RESEARCH AND ANALYSIS
RATIONING INHERENT IN SYSTEMS OF CARE
Explicit rationing decisions are made at every level of decision-making.
Depending on the role of government, expenditures for training of personnel, the construction and placement of facilities, and other important
infrastructure such as information technology are planned and budgeted.
In more private systems such as in the United States, such decisions derive
from advocates and private or nonprofit actors influenced by the availability
of governmental grants and financial and other incentives. Such mundane
appearing policy decisions as definitions of essential health services to
be covered, eligible treatments, permissible reimbursable providers, and
administrative rules on conditions of service importantly establish who
will be treated and how. These explicit decisions are compounded at every
8
EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
level of administration and service. Managers at every medical facility must
decide how to allocate their budgets and personnel. Hospital administrators
must decide the resources devoted to departments such as emergency care,
trauma care, burn units, behavioral services, and much more. They also
usually must design the scheduling of work, the intensity of services, time
allocated per encounter, the size of allowable queues and acceptable waiting
times, the number and availability of surgical suites, and the like. Such
operational decisions as the intensity of nursing service on different service
units are significantly associated with important outcomes such as mortality
(Aiken, Clarke, Sloane, Sochalski, & Silber, 2002; Needleman et al., 2011). In
a competitive market, hospitals may narrow their activities to services most
remunerative (such as specialty hospitals), locate in suburban areas with
few persons in poverty, or avoid functions that often operate at a financial
loss such as emergency care, burn units, and mental health services.
Much of the rationing that occurs in health systems arise from these
managerial decisions. Klein, Day, and Redmayne (1996), for example, have
elucidated a range of rationing strategies that would not necessarily be
seen as rationing by those affected. Among these strategies are denial,
as when particular services are refused when not covered by a particular
insurance arrangement; rationing by selection as when patients are chosen
by the likelihood of success, willingness to pay more, or personal influence;
rationing by deflection, such as referral motivated to get rid of bothersome
or difficult patients; rationing by deterrence, as when various barriers are
placed on access to services such as long waiting times, unresponsive phone
systems, unpleasant and uncomfortable surroundings, and discourteous
staff; rationing by dilution, as when encounter time is reduced or unnecessary repeated visits are required to complete the service; and rationing by
termination as when clients seeking further help are told that no more can
be done for them.
Much of the emotion surrounding rationing is evident when rationing
occurs at the point of clinical care and when some service believed to be valuable is withheld. Many countries have had commissions and professional
work groups to devise appropriate rationing rules but generally their products are too abstract and removed from the realities of care to be useful at
the point of service (Sabik & Lie, 2008). Many medical ethicists seek explicit
and transparent principles for such decisions (Daniels, 2008; Daniels &
Sabin, 2002), but it can be argued that the great variability of patients, life
circumstances, cultural differences, personal preferences, and the trajectory
of illness itself make clinical discretion (implicit rationing) better suited to
realistic contingencies at the point of service (Mechanic, 1995, 1997).
Perhaps the most explicit effort to establish a rationing approach was the
Oregon Health Plan (OHP), designed to increase the number of enrollees
Rationing of Health Care
9
under its Medicaid program within a highly constrained budget, by devising
a system to establish a hierarchy from the most basic and necessary care to
less effective and less useful interventions (U.S. Congress, Office of Technology Assessment, 1992). After a number of advisory groups and public meetings, health professionals prioritized some 700 treatment condition/pairs by
efficacy and other community values using various types of data. After the
initial ranking, there were some obvious aberrations, for example, tooth capping had higher priority than surgery for ectopic pregnancy or appendectomy. Following much criticism, the rankings were readjusted by clinicians
on the basis of professional experience. Initially, it was established that the
budget was only sufficient to fund the highest 588 treatment/condition pairs,
but it was expected that each year the service line would be adjusted depending on the budget.
The OHP effort received enormous attention around the world as well as in
the United States. Implemented in 1994, the approach was to extend Medicaid coverage to an additional 320,000 enrollees. But contrary to much of the
public discussion, the ability to do this came from enhanced state funding
due to an upturn in the economy and the growing dependence on managed
care. Moreover, not only did the list not ration care to any appreciable extent
but in fact provided a more generous set of benefits than were available in the
prior Medicaid program. There were loopholes as well that allowed physicians to provide services below the cutting point if patients had conditions
needing treatment for treatment/pairs above the line (Leichter, 1999). Finally,
as most patients were capitated within HMOs, physicians had discretion to
provide whatever care they deemed necessary whether above or below the
line. An interesting analysis by Jacobs, Marmor, and Oberlander (1999) saw
OHP as more a political than rationing strategy to increase investments in
health by bringing greater awareness of need to the public and the legislature.
As the years have gone by, it is clear that the key driving influence on what
care is and is not provided is the state economic environment and funding for
the Medicaid program. Oregon has faced some very difficult budgetary years
requiring cutbacks in coverage and increased co-payments in their Medicaid
program, leading to significant disenrollment among the poor.
TENSIONS BETWEEN EQUITY AND RESCUE
In the early debates over the treatment/condition pairs in Oregon, a major
criticism of the initial list was the failure to acknowledge the rule of rescue
that gives high priority to the saving of identifiable lives when such possibilities are evident (Hadorn, 1991). For example, tooth capping was given greater
priority than surgery for ectopic pregnancy or appendectomy, which could
10
EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES
save lives. Public health practitioners and cost-effectiveness analysts are typically attuned to interventions that save or enhance statistical lives whether
through prevention or careful planning of treatment, but the public, and
often policy makers as well, respond to the poignancy of identified individual cases, allowing individual campaigns and disease advocates to skillfully
use the media to encourage disproportionate resources to their cause
(Daniels, 2012; Largent & Pearson, 2012). Major national health policies have
been made, such as the initially unique eligibility of coverage for persons
with end-stage renal disease treatment within Medicare, in part by staging
individual patients and treatments before the key congressional committee
(Rettig, 1991). Infant mortality rates and case fatality rates often appear to
be less persuasive than presentation of an attractive patient whose survival
requires a particular type of treatment. Many advocacy groups have developed impressive expertise in mobilizing emotional commitment to their
cause in ways that appear to violate norms of equity and cost-effectiveness.
KEY ISSUES FOR RESEARCH
Over the years there have been allegations that these inclinations to think in
terms of known individuals in contrast to aggregate disease burden result
in a discordance between health care investment and the true burden of
disease. Health research is also rationed with a majority of meritorious
projects as judged by peers remaining unfunded. Observers point to the
impressive success of advocacy for specific diseases such as HIV/AIDS
(Gould, 2009), breast cancer (Lerner, 2001), and end-stage renal disease
(Rettig, 1991), relative, for example, to other cancers, behavioral health, and
most orphan diseases (Largent & Pearson, 2012). Discussion has focused on
funding patterns of the National Institutes of Health (NIH), the largest health
funding agency in the United States, for which there are data amenable to
research, but even these data and their underlying classifications are elusive.
Researchers have reported a range of conclusions about the discordance
between disease burden and funding patterns (Sampat, Buterbaugh, & Perl,
2013). Using a new NIH data system, the Research, Condition, and Disease
Categorization System introduced in 2008, Sampat et al. (2013) examined in
a variety of ways the association between burden as measured by mortality
and by hospitalization and NIH funding. Contrary to popular stereotype
and anecdote, they found a reasonable correspondence between these measures. They estimate, for example, that deaths account for 54% of funding
variation with similar estimates for hospitalization. This, of course, leaves
a great deal of variation that requires explanation. These data are only a
yearly cross-section and require more extended longitudinal analysis as new
patterns of funding evolve. As NIH funding grows more slowly and is even
more constrained, the debate about allocation will become more contentious.
Rationing of Health Care
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Research in access to care and expenditure patterns document vast disparities by geography, urban and rural living, and residence as well as by race,
ethnicity, gender, socioeconomic status, and immigrant status. Such disparities are large and persistent (Aday, 2001; Sampson, 2012). Such disparities
and their consequences result from a multiplicity of biopsychosocial determinants and not directly by rationing. However, the same determinants of many
of these disparities, such as access to information, resources, and influential
social networks (Link & Phelan, 2010), also illuminate the extent of exposure to rationing and its effects. Nevertheless, these two large research areas
and literatures are almost completely parallel, with little mutual awareness
and almost no linkage. Yet, many of the major social determinants of health
are linked to the burdens of rationing, where access to limited resources are
affected by many of the same social determinants of social status, power and
influence, information, and the availability of social networks. There is need,
both theoretically and empirically, to blend these important endeavors to
understand how social determinants shape where, when, and how rationing
magnifies social inequalities.
There remain too few microstudies on how rationing policies are devised
and implemented at different levels of the health care system from the explicit
managerial decisions made by legislatures, administrators, and insurance
executives to the provision of services at the clinical level. However, there
are many relevant studies in varying disciplines and subareas of research
that have never been brought together in a meaningful way or tied usefully
to larger theoretical concerns although there have been some early commendable attempts (Elster, 1992; Klein et al., 1996).
Rationing, however conceptualized and whatever we call it, will have
increasing importance in health care in modern nations as technological
possibilities outpace economic growth. Already, health expenditures are
squeezing other important social priorities in many advanced countries,
some with greater importance to health than the provision of health services.
Establishing how to reign in health care costs is now one of the most
important challenges of social policy and one where social and behavioral
science have much to contribute.
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DAVID MECHANIC SHORT BIOGRAPHY
David Mechanic is the René Dubos University Professor of Behavioral
Sciences and served as Director of the Institute for Health, Health Care
Policy, and Aging Research at Rutgers University (1985–2013). He is the
author of more than 400 publications, including The Truth About Health Care:
Why Reform is Not Working in America; Inescapable Decisions: The Imperatives of
Health Reform, and Mental Health and Social Policy: Beyond Managed Care (sixth
edition). Dr. Mechanic is a member of the National Academy of Sciences, the
American Academy of Arts and Sciences, and the Institute of Medicine, and
has received numerous awards, including the Rhoda and Bernard Sarnat
International Prize in Mental Health from the Institute of Medicine, the
Distinguished Career Award for the Practice of Sociology and the Lifetime
Contributions Award in Mental Health from the American Sociological
Association, the Rema Lapouse Award and the First Carl Taube Award
for Distinguished Contributions to Mental Health Services Research from
the American Public Health Association, and the Baxter Health Services
Research Prize. Dr. Mechanic received his doctorate in sociology from
Stanford University.
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