Mental Health: A Report of the Surgeon General

or encourage a shift to general health care services for
mental health care, disability may increase and work
performance decline (Rosenheck etal., 1999; Salkever,
1998). These losses to employers may well offset
management-based savings in mental health specialty
costs. Findings such as these raise concern about the
use of shortsighted cost-cutting measures that may
contribute to less appropriate and less effective
treatment, reduced work function, and no net economic
benefits.

Many of the administrative techniques used in
managed care (such as case management, utilization
review, and implementation of standardized criteria)
have the potential to improve the quality of care by
enhancing adherence to professional consensus
treatment guidelines (Berndt et al.. 1998) and possibly
improving patient outcomes (Katon et al., 1997).
However, little is known about what happens when
management is introduced into service systems in
combination with high cost-sharing (often the case with
non-parity mental health benefits) (Burnam & Escarce,
1999). These combined limitations on services may
seriously inhibit the provision of full and necessary
treatment and lower the quality of care. The differential
impact on service use on the basis of gender or other
sociocultural factors is unknown.

In summary, managed behavioral health plans
differ considerably in their access and other aspects of
quality in mental health care. Current practices often
provide little incentive to improve quality. There is,
however, some evidence that access and quality can be
maintained or improved after managed care is
introduced (Merrick, 1997). This is particularly
important because some evidence suggests that
limitations in mental health access affect people’ s well-
being and result in decreases in work performance,
increased absenteeism, and increased use of medical
(Rosenheck et 1999), Outcome
assessments which focus on functional improvements
are particularly important in the mental health area
because of the ease with which management practices
have been able to reduce treatment intensity and cost of
mental health services.

services al.,

426

Toward Parity in Coverage of Mental
Health Care

“Parity” refers to the effort to treat mental health
financing on the same basis as financing for general
health services. In recent years advocates have
repeatedly tried to expand mental health coverage—in
the face of cost-containment policies that have been
widespread since the 1980s. Parity legislation is an
effort to address at once both the adverse selection
problem and the fairness problem associated with moral
hazard. The fundamental motivation behind parity
legislation is the desire to cover mental illness on the
same basis as somatic illness, that is, to cover mental
illness fairly. A parity mandate requires all insurers in
a market to offer the same coverage, equivalent to the
coverage for all other disorders. The potential ability of
managed care to control costs (through utilization
management of moral hazard) without limiting benefits
makes a parity mandate more affordable than under a
fee-for-service system.

Managed care coupled with parity laws offers
opportunities for focused cost control by eliminating
moral hazard without unfairly restricting coverage
through arbitrary limits or cost-sharing and by
controlling adverse selection. However, continued use
of unnecessary limits or overly aggressive management
may lead to undertreatment or to restricted access to
services and plans.

Benefit Restrictions and Parity

As noted above, mental health benefits are often
restricted through greater limits on their use or by
imposing greater cost-sharing than for other health
services. Despite both the cost-controlling impact of
managed care and advocacy to expand benefits,
inequitable limits continue to be applied to mental
health services. Parity legislation in the states and
Federal government has attempted to redress this
inequity.

In 1997, the most common insurance restriction
was an annual limit on inpatient days, annual or
lifetime limits were used somewhat less. Higher cost-
sharing was used by the smallest percentage, with the
use of separate deductibles almost nonexistent on
inpatient mental health benefits. For outpatient mental
health services, a quarter of the most prevalent plans
had no special limitations (Buck et al., 1999). Unlike
the situation for inpatient services, there was no marked
preference for the use of any particular type of
limitation for outpatient services.

Mental health benefits are significantly restricted
when special limitations are employed. Maximum
lifetime limits for both inpatient and outpatient services
were typically only $25,000. In some extreme cases,
annual limits were only $5,000 for inpatient care and
$2,000 for outpatient care. Day limits remained at the
traditional limit of 30 inpatient days. However, the
median limit on outpatient visits, traditionally 20,
reached 25 in 1997 (Buck et al., 1999)

Studies show that the gap in insurance coverage
between mental health and other health services has
been getting wider. One study found that the proportion
of employees with coverage for mental health care
increased from 1991 to 1994 (Jensen et al., 1998).
However, more have multiple limits on their benefits,
partly due to the increased use of managed care.
Another study found that while health care costs per
employee grew from 1989 to 1995, behavioral health
care costs decreased, both absolutely and as a share of
employers’ total medical plan costs (Buck & Umland,
1997).

A report by the HayGroup (1998) on changes in the
health plans of medium and large employers provides
more recent evidence for these trends. Between 1988
and 1997, the proportion of such plans with day limits
on inpatient psychiatric care increased from 38 percent
to 57 percent, whereas the proportion of plans with
outpatient visit limits rose from 26 percent to 48
percent. On the basis of this and other information, the
HayGroup estimated that the value of behavioral health
care benefits within the surveyed plans decreased from
6.1 percent to 3.1 percent from 1988 to 1997 as a
proportion of the value of the total health benefit
(HayGroup, 1998).

Extensive limits on mental health benefits can
create major financial burdens for patients and their
families. One economic study modeled the out-of-
pocket burden that families face under existing mental

Organizing and Financing Mental Health Services

health coverage using different mental health expense
scenarios (Zuvekas et al., 1998). For a family with
mental health treatment expenses of $35,000 a year, the
average out-of-pocket burden is $12,000; for those with
$60,000 in mental health expenses a year, the burden

- averages $27,000. This is in stark contrast to the out-of-

427

pocket expense of only $1,500 and $1,800, respect-
ively, that a family would pay for medical/surgical
treatment.

Legislative Trends Affecting Parity in Mental
Health Insurance Coverage

Federal legislative efforts to achieve parity in mental
health insurance coverage date from the 1970s and
have continued through to present times. However, a
major parity initiative was included in the failed 1994
Health Security Act (the Clinton Administration’ s
health care reform proposal). Although national health
care reform stalled, the drive for mental health parity
continued, culminating in passage of the Mental Health
Parity Act in 1996. Implemented in 1998, this
legislation focused on only one aspect of the inequities
in mental health insurance coverage: “catastrophic”
benefits. It prohibited the use of lifetime and annual
limits on coverage that were different for mental and
somatic illnesses. As Federal legislation, it included
within its mandate some of the Nation’s largest
companies that are self-insured and otherwise
exempted from state parity laws because of the
Employment Retirement Income Security Act.
Although it was seen as an important first substantive
step and rhetorical victory for mental health advocacy,
the Parity Act was limited in a number of important
ways. Companies with fewer than 50 employees or
which offered no mental health benefit were exempt
from provisions of the law. The parity provisions did
not apply to other forms of benefit limits, such as per
episode limits on length of stay or visit limits, or
copayments or deductibles, and they did not include
substance abuse treatment. In addition, insurers who
experienced more than a I percent rise in premium as
a result of implementing parity could apply for an
exemption. Despite these limitations, Federal parity
legislation put mental health coverage concerms “on the
Mental Health: A Report of the Surgeon General

”

map and demonstrated an
unprecedented concern to redress inequities in coverage
(Goldman, 1997).

State efforts at parity legislation paralleled those at

for policymakers

the Federal level. During the past decade, a growing
number of states have implemented parity (Hennessy &
Stephens, 1997; National Advisory Mental Health
Council, 1998; SAMHSA, 1999). Some (e.g., Texas)
target their parity legislation narrowly to include only
people with severe mental disorders; others use a
broader definition of mental illness for parity coverage
(e.g., Maryland) and include, in some cases, substance
abuse. Some states (e.g., Maryland) focus on a broad
range of insured populations; others focus only on a
single population (e.g., Texas state employees)
(National Alliance for the Mentally Ill, 1999).

Until recently, efforts to achieve parity in insurance
coverage for the treatment of mental disorders were
hampered by limited information on the effects of such
mandates. This led to wide variations in estimates of
the costs of implementing such laws. For example, past
estimates of the increase in premium costs of full parity
in proposed federal legislation have ranged from 3
percent to more than 10 percent (Sing et al., 1998).

Recent analyses of the experience with state and
Federal parity laws have begun to provide a firmer
basis for such estimates. These studies indicate that
implementing parity laws is not as expensive as some
have suggested.

Case studies of five states that had a parity law for
at least a year revealed a small effect on premiums-—at
most a change of a few percent, plus or minus. Further,
employers did not attempt to avoid the laws by
becoming self-insured or by passing on costs to
employees (Sing et al., 1998). Separate studies of laws
in Texas, Maryland, and North Carolina have shown
that costs actually declined after parity was introduced
where legislation coincided with the introduction of
managed care. In general, the number of users
increased, with lower average expenditures per user.
There is no evidence on the appropriateness of
treatment delivered following the introduction of parity
laws (National Advisory Mental Health Council, 1998).
Similar findings come from case studies of private

428

insurance plans that have provided generous mental
health benefits (Goldman et al., 1998) and of plans that
have switched to carve-out managed care (Ma &
McGuire, 1998; Sturm et al., 1999).

Some evidence also exists of the effects of the
Federal Mental Health Parity Act, which went into
effect in 1998. Under that law, group health plans
providing mental health benefits may not impose a
lower lifetime or annual dollar limit on mental health
benefits than exists for medical/surgical benefits. A
national survey of employers conducted after the Act
went into effect found that while ‘mid- to large-size
companies made some reductions in benefits and added
cost-sharing, small companies (the majority of
companies in the country) did not make compensatory
changes to their benefits. This was because they judged
that the projected costs were minimal or nonexistent
(SAMHSA, 1999). Additional evidence that the law has
resulted in minimal added expense comes from
exemptions that may be granted if a plan experiences a
cost increase of at least | percent because of the law. In
the first year of the law’s implementation, only a few
plans nationwide had requested such an exemption
(SAMHSA, 1999).

In summary, evidence of the effects of parity laws
shows that their costs are minimal. Introducing or
increasing the level of managed care can significantly
limit or even reduce the costs of implementing such
laws. Within carve-out forms of managed care, research
generally shows that parity results in less than a 1
percent increase in total health care costs. In plans that
have not previously used managed care, introducing
parity simultaneously with managed care can result in
an actual reduction in such costs.

Conclusions

In the United States in the late 20th century, research-
based capabilities to identify, treat, and, in some
instances, prevent mental disorders are outpacing the
capacities of the service system the Nation has in place
to deliver mental health care to all who would benefit
from it. Approximately 10 percent of children and
adults receive mental health services from mental
health specialists or general medical providers in a
given year. Approximately one in six adults, and one in

five children, obtain mental health services either from

health care providers, the clergy, social service
agencies, or schools in a given year.

Chapter 6 discusses the organization and financing
of mental health services. The chapter provides an
overview of the current system of mental health
services, describing where people get care and how
they use services. The chapter then presents
information on the costs of care and trends in spending.
Only within recent decades, in the face of concerns
about discriminatory policies in mental health
financing, have the dynamics of insurance financing
become a significant issue in the mental health field. In
particular, policies that have emphasized cost
containment have usheréd in managed care. Intensive
research currently is addressing both positive and
adverse effects of managed care on access and quality,
generating information that will guard against untoward
consequences of aggressive cost-containment policies.
Inequities in insurance coverage for mental health and
general medical care—the product of decades of stigma
and discrimination—have prompted efforts to correct
them through legislation designed to produce financing
changes and create parity. Parity calls, for equality
between mental health and other health coverage.

1. Epidemiologic surveys indicate that one in five
Americans has a mental disorder in any one year.

2. Fifteen percent of the adult population use some
form of mental health service during the year.
Eight percent have a mental disorder; 7 percent
have a mental health problem.

3. Twenty-one percent of children ages 9 to 17
receive mental health services in a year.

4. The U.S. mental health service system is complex
and connects many sectors (public-private,
specialty-general health, health-social welfare,
housing, criminal justice, and education). As a
result, care may become organizationally
fragmented, creating barriers to access. The
system is also financed from many funding
streams, adding to the complexity, given
sometimes competing incentives between funding
sources.

Organizing and Financing Mental Health Services

5. In 1996, the direct treatment of mental disorders.
substance abuse, and Alzheimer’s disease cost the
Nation $99 billion; direct costs for mental
disorders alone totaled $69 billion. In 1990.
indirect costs for mental disorders alone totaled
$79 billion.

6. Historically, financial barriers to mental health
services have been attributable to a variety of
economic forces and concerns (e.g., market
failure, adverse selection, moral hazard, and
public provision). This has accounted for
differential resource allocation rules for financing
mental health services. _

a. “Parity” legislation has been a partial
solution to this set of problems.

b. Implementing parity has resulted in
negligible cost increases where the care has
been managed.

7. In recent years, managed care has begun to
introduce dramatic changes into the organization
and financing of health and mental health
services.

8. Trends indicate that in some segments of the
private sector per capita mental health
expenditures have declined much faster than they
have for other conditions.

9. There is little direct evidence of problems with
quality in well-implemented managed care
programs. The risk for more impaired populations
and children remains a serious concern.

10. An array of quality monitoring and quality
improvement mechanisms has been developed,
although incentives for their full implementation
have yet to emerge. In addition, competition on
the basis of quality is only beginning in the
managed care industry.

11. There is increasing concern about consumer
satisfaction and consumers’ rights. A Consumers
Bill of Rights has been developed and
implemented in Federal Employee Health Benefit
Plans, with broader legislation currently pending
in the Congress.
Mental Health: A Report of the Surgeon General

Appendix 6-A: Quality and
Consumers’ Rights
The Federal government’s concern with quality in the
Nation’s health care system was expressed in President
Clinton’s charge to the Advisory Commission on
Consumer Protection and Quality in the Health Care
Industry (March 26, 1997) “to recommend such
measures as may be necessary to promote and assure
health care quality and value and protect consumers
and workers in the health care system.” In November
1997 the Commission recommended a Consumer Bill
of Rights and Responsibilities (President’s Advisory
Commission on Consumer Protection and Quality in
the Health Care Industry, 1997).
The Consumer Bill of Rights and Responsibilities
(Bill of Rights) is intended to meet three major goals:
« Strengthen consumer confidence by assuring that
the health care system is fair and responsive to
consumers’ needs; it gives consumers credible and
for addressing their
concerns and encourages them to take an active
role in improving and assuring their health.
¢  Reaffirm the importance of a strong relationship
between consumers and their health care
professionals.

effective mechanisms

* Underscore the critical role of consumers in
safeguarding their own health by establishing both
rights and responsibilities for all participants in
improving health status.

The Bill of Rights addresses a number of issues that are

particularly relevant to mental health care:

¢ Information disclosure of comparable measures of
quality and consumer satisfaction from health
plans, professionals, and facilities;

* Direct access to specialists of choice for
consumers with complex or serious medical
conditions who require frequent specialty care,

¢ Authorization, when required, for an adequate
number of visits under an approved treatment
pian;

* Vulnerable groups, including individuals with
mental disabilities, require special attention by
decisionmakers to protect their health coverage
and quality of care;

430

* Confidentiality protections for sensitive services,
such as mental health and substance abuse
services, provided by health plans, providers,
employers, and purchasers to safeguard against

improper use or release of individually
identifiable information.

* To move the mental health care system from a
focus on providers to a focus on consumers, future
care systems and quality tools will need to reflect
person-centered values. This nascent trend is
driven both by the consumer movement in
American society and by a strong focus on
consumer rights in a managed care environment.
First steps include the voluntary adoption of the
principles of the Consumer Bill of Rights by
Federal agencies and passage of legislation
requiring their national implementation.

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Salkever, D. (1998). Psychiatric disability in the workplace.
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Shaffer, D., Fisher, P., Dulcan, M. K.. Davies, M.,
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Epidemiology of Child and Adolescent Mental
Disorders Study. Journal of the American Academy of
Child and Adolescent Psychiatry, 35, 865-877.

Shore, M., & Cohen, M. (1994). Introduction. Milbank
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Sturm, R., & Sherbourne, C. D. (1999), Are barriers to
mental health and substance abuse care still rising?
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135-146.
CHAPTER 7
CONFIDENTIALITY OF MENTAL

HEALTH INFORMATION: ETHICAL, LEGAL,
AND POLICY ISSUES

 

 

Contents
Chapter Overview oo. .0cccceceeeeeeenerss ree nen sree esse 2 252222 438
Ethical Issues About Confidentiality ........---eeeccrere ress ster stress 438
Values Underlying Confidentiality .....-.--+-+-2serrerncernreses sees 439
Reducing Stigma ........-0e0eeee eee eeere erent eres s sess eee 439
Fostering Trust ....-.e0ececeerec ese et esses eres ese n esses e222 TTT 439
Protecting Privacy ....+-+-0e0ereceeceee arene eters esse esse 22 439
Research on Confidentiality and Mental Health Treatment ....-------- sr rrrrer 440
Current State of Confidentiality LaW cccccec cece seen sneer eens sere esse esse eee ee 441
Overview of State Confidentiality Laws ....---0e-crecsrercss sess 44]
Exceptions to Confidentiality .........e2eeeceerrerere eres sts eee 442
Consent by the Person in Treatment ...-.-eee cere cere t reteset 442
Disclosure to the Client ........0eeeeeerereeerrrees rs nesses ees 443
Disclosure to Other Providers .....--.0+eereerresc reese 443
Disclosure to Payers ...- 0-0 eeeceeeeee teres eres esse eee TTT 443
Disclosure of Information to Families ....2-ee cee cee cece r retest 444
Oversight and Public Health Reporting ...-----.seercrsrrrresst ess 444
Research ....ccccececeeee eee t ner eee snes sees n ees see eee ee 444
Disclosure to Law Enforcement Agencies ...--0-000eerrccsercttssss 445

Disclosure to Protect Third Parties ....-.--0ececretec resets 445
Contents, continued

 

Federal Confidentiality Laws... 0.2... ccc cee eet ete ene e eens 446
Potential Problems With the Current Legal Framework .......... 00.60 e ee eee eens 447
SUMMALY 2.0 ree nee e ee ee tenn Etec eet e eee 448
COnclusionS 2.0... ee ee een ee Ee EE DEER eee 449
CHAPTER 7

 

CONFIDENTIALITY OF MENTAL
HEALTH INFORMATION: ETHICAL, LEGAL,

Effective psychotherapy. .

AND POLICY ISSUES

. depends upon an atmosphere of confidence and trust in which the patient is

willing to make a frank and complete disclosure of facts, emotions, memories, and fears. Because of the
sensitive nature of the problems for which individuals consult psychotherapists, disclosure of confidential

communications made during counseling sessions may cause embarrassment or disgrace. For this reason,

the mere possibility of disclosure may impede development of the confidential relationship necessary for

successful treatment.

TT" ringing endorsement of the importance of
confidentiality in the provision of mental health
treatment comes from the U.S. Supreme Court (Jaffee
v. Redmond, 1996). The Court’s language, in a decision
creating a psychotherapist privilege in Federal court,
appears to leave little doubt that there is broad legal
protection for the principle of confidentiality. Public
opinion polls also show widespread support for the
privacy of health care information: 85 percent of those
responding to one survey characterized protecting the
privacy of medical records as essential or very
important (Peck, 1994).

Yet the reality is much more complex. State and
Federal laws do protect the confidentiality of health
care information, including information created in
providing mental health and substance abuse treatment.
However, these laws have numerous exceptions, are
inconsistent from state to state, and, in the opinion of
many experts, provide less protection of confidentiality
than is warranted.

In addition, changes in the health care industry, and
advances in technology, have created new concerms
regarding the privacy of health care information. Health
care increasingly is delivered and paid for by for-profit

437

corporations with business in many states. This shift
has several relevant consequences. First, individual
health care information may be held and disseminated
far beyond the office of the practitioner providing care.
Second, cost containment concerns have resulted in the
emergence of a variety of techniques that depend on
third-party review of a practitioner's judgment that an
individual should receive care, reviews that have
resulted in increased demands for patient-specific
information before care is approved. In addition.
private health care information may be distributed for
the purpose of marketing commercial products, such as
pharmaceuticals, a growing business that many believe
constitutes an improper use of such information
(Jeffords, 1997; O’Harrow, 1998). Finally, private
health information is used to create much larger
databases, for various purposes including treatment and
research, thereby increasing the number of people with
access to such information.

Technology also has emerged as a major issue in
privacy debates. The ultimate impact of technology is
not yet clear. One leading expert on the privacy of
health care information asked whether technology
would help or hinder the protection of health care
Mental Health: A Report of the Surgeon General

privacy, responded that the answer was yes and no
(Gellman, in press). On the one hand, new technologies
can support, and in some cases make possible, the
changes that have transformed the health care industry.
The “health information technology industry” in 1997
sold approximately $15 billion of products to health
care organizations, including medical business
decision-support software, data warehousing, clinical
expert systems, and electronic medical record systems
designed to support large health care enterprises
(Kleinke, 1998). There also have been ongoing efforts
to create computer-based patient records for several
years (Dick & Stean, 1991). Such records in many ways
can be more secure than paper records through various
mechanisms, for example, by restricting access to
designated users. Yet much of the same technology
raises concerns about privacy, because of its capacity
to store and disseminate rapidly to multiple users
personal information that many individuals would
prefer remain private. If the myriad needs of the health
care system could be met by using only data stripped of
patient-specific information, many concerns about
privacy might be ameliorated. However, data that
identify the individual are still considered necessary for
many purposes, including the administration of
payment systems and fraud investigations. This has led
some to conclude that the ultimate question when
patient-specific data are transported and used outside of
the clinical context is security of the data (Moran,
1998).

Congress, in an effort to respond to growing public
concern over health care information privacy, has
committed the Federal government to the creation ofa
national confidentiality standard by 2000. Congress
also has directed the Secretary of Health and Human
Services to produce recommendations for simplifying
and standardizing requirements for the electronic
transmission of health information (Health Insurance
Portability and Accountability Act, 1996). The purpose
is to improve the effectiveness and efficiency of the
health care system (Gellman, 2000). It is not yet clear,
given the complexities of the issues, that the deadline
for a national privacy standard will be met. However,
it is clear that the confidentiality of health care

438

information has emerged as a core issue in recent years,
as concerns regarding the accessibility of health care
information and its uses have risen.

Chapter Overview

This section of the report discusses the values
underlying confidentiality, its importance in individual
decisions to seek mental health treatment, the legal
framework governing confidentiality and potential
problems with that framework, and policy issues that
must be addressed by those concerned with the
confidentiality of mental health apd substance abuse
information. Although the current debate regarding
Federal standards is not presented in great detail, it is
referred to when appropriate to provide context for the
broader discussion.

Ethical Issues About Confidentiality
Each profession that provides mental health treatment
embraces confidentiality as a core ethical principle. For
example, the Code of Ethics of the American Medical
Association (AMA) states that “a physician... shall
safeguard a patient’s confidences within the restraints
of the law” (American Medical Association [AMA],
1996). The AMA more recently has observed that
“patients have a basic right to privacy of their medical
information and records. . .patients’ privacy should be
honored unless waived by the patient in a meaningful
way, or in rare instances of strongly countervailing
public interest” (AMA, 1998). The Ethical Principles
of Psychologists state that “psychologists have a
primary obligation and take reasonable precautions to
respect confidentiality rights” (American
Psychological Association, 1992). (See also, American
Managed Behavioral Healthcare Association, 1998;
American Psychiatric Association, 1998; National
Alliance for the Mentally Ill, 1998).

While the importance of confidentiality as an
ethical principle is evident from these statements, it is
also clear that confidentiality is not an absolute value.
The AMA’s 1996 statement qualifies the principle of
confidentiality by observing that it is to be protected
“within the restraints of the law.” The American

Psychological Association provides exceptions as well,
noting for example that disclosure of otherwise

confidential

information “where

is permissible
permitted by law for a valid purpose, such as. . (3) to
protect the patient or client from harm” (Ethical
Principles of Psychologists and Code of Conduct,
5.05). As the discussion below suggests, the law creates
many circumstances in which confidentiality may or
must be breached. At the same time, legal principles
reflect broader values. and so there is often significant
disagreement about the exceptions to confidentiality
that the law permits or requires.

It is also important to note at the outset that the
right to confidentiality belongs to the person receiving
services (Campbell, 2000). The ethical codes of the
various professions, and most confidentiality laws,
obligate professionals | to take steps to protect
confidentiality. However, in. general, the right to
confidentiality belongs to the client; the right to waive
confidentiality also is the client’s, although there are
situations in which the provider of treatment has no
choice under the law but to disclose.

Values Underlying Confidentiality

The principle of confidentiality is designed to advance
certain values. These include reducing the stigma and
discrimination associated with seeking and receiving
mental health treatment, fostering trust in the treatment
relationship, ensuring individuals privacy in their
health care decisions, and furthering individual
autonomy in health care decisionmaking.

Reducing Stigma

There are certain illnesses that often evoke public
unease and on occasion overt discrimination. For
example, in the past, cancer was often not discussed; in
fact, physicians often chose not to tell patients that they
had diagnosed cancer. In recent years, individuals with
AIDS have often faced discrimination. Mental illness
has often fallen into this category as well. For years, the
stigma and discrimination associated with mental
illness were reinforced by laws that stripped people of
their legal rights upon admission to a psychiatric
hospital, and by social attitudes that often equated
mental illness with potential violence. While many of

Confidentiality of Mental Health Information

the legal rules that reinforced discrimination have been
removed, public attitudes regarding mental illness
continue to vary. In an effort to reduce the risk of
stigma and the discrimination that often results.
confidentiality laws seek to protect both the fact that an

’ individual has sought mental health treatment as well as

439

the disclosures that are made during treatment.

Fostering Trust

Confidentiality generally is considered to be a
cornerstone of a doctor-patient relationship (Dierks,
1993). Many psychotherapists assume that mental
health treatment is most likely to be successful only if
the client has a trusting relationship with the clinician
(Sharkin, 1995). The Supreme Court language quoted
at the beginning of this section reflects the same
assumption. While the research findings on this subject
are somewhat mixed (see discussion below), it is
beyond dispute that many individuals in seeking
treatment for mental illness reveal much of their private
selves. It seems reasonable to assume that for many
people, trust that their privacy will not be intruded
upon beyond the confines of the clinical relationship is
an important element in permitting unguarded
exchanges during treatment. Concerns regarding
confidentiality may cause individuals to take steps to
protect themselves from unwanted disclosures in other
ways that carry their own costs. For example, an
individual may decide to pay for his or her own care,
withhold certain types of sensitive information during
treatment, or avoid seeking care.

Protecting Privacy
The law has given considerable attention in the last 3
decades to the idea that people have a right to privacy
in making decisions regarding their health care. While
the legal right to privacy has been discussed and
applied most often in the context of decisions involving
procreation and decisions at the end of life, the general
principle that the value of privacy is important to
mental health treatment is not disputed.
Competent individuals, or in the case of
children, their parents or legal guardians, have a right
to self-determination in deciding to seek or forego

minor
Mental Health: A Report of the Surgeon General

health care, including mental health or substance abuse
treatment. There are exceptions, for example, the use of
court-ordered
treatment. However, the general trend has been to
expand autonomy in health care decisionmaking. Two
ethical and legal principles are important anchors to the
principle of autonomy. The first, informed consent,
assumes that the better informed an individual is, the
better equipped he or she is to make health care
decisions. The second, confidentiality, is considered to
be particularly important in the context of mental health
treatment. This is because of the assumption that an

involuntary civil commitment or

absence of confidentiality may make a person less
likely to seek treatment.

Research on Confidentiality and

Mental Health Treatment

The values that underlie confidentiality in large part
assume that people will be less likely to seek needed
help (Corcoran & Winsalde, 1994) and, once in
treatment, less likely to disclose sensitive information
about themselves if they believe that the information
may be disseminated outside the treatment relationship.
Available research supports these assumptions. For
example, in one study, individuals receiving
psychotherapy placed a high value on the importance of
confidentiality to the therapeutic relationship, as did a
matched group of hospital employees (McGuire et al.,
1985). Parents of children in psychotherapy reported
that confidentiality was an important issue that needed
to be discussed in the context of informed consent
processes (Jensen et al., 1991). Another study suggests
that concerns regarding stigma and confidentiality were
factors in decisions by people with dual diagnoses
(psychiatric illness and substance abuse disorder) to
seek treatment from the community mental health
system (Howland, 1995). Yet another study reports that
the decision of therapists to seek or not seek treatment
was influenced, among other things, by concerns
regarding confidentiality (Norman & Rosvall, 1994). In
the context of drug testing, the degree to which

confidentiality was protected influenced the attitudes of

440

those who had been ordered into drug testing regarding
the seeking of employment (Sujak et al., 1995).

Subjects who were told that confidentiality was
absolute reported that they were more willing to
disclose information about themselves than individuals
who were told that confidentiality was limited (Nowell
& Spruill, 1993). Confidentiality, of course, is not
absolute, and so the impact on individuals in treatment
of various limits on confidentiality is an important
question. This was explored in one of the few
confidentiality studies to use as research subjects
people actually in treatment (rather than students
simulating the role of patient). Taube and Elwork
(1990) found that patient self-disclosure was influenced
in large measure by how informed the patient was
about confidentiality law and by how consequential to
the patient the legal limits on confidentiality were in his
or her particular circumstances. Roback and Shelton
(1995), noting that some studies suggested that
perceived limitations on confidentiality did not deter
patients from self-disclosing, also noted that as persons
perceived themselves at risk for serious sociolegal
consequences, being informed that certain disclosures
would result in mandatory reporting did limit
self-disclosing.

Finally, one of the most recent studies of this
subject, which used clients and college students as
subjects for the research, concluded that subjects were
less candid with a therapist if they understood that
information regarding their treatment was to be
disclosed to a third party for case utilization review
(Kremer & Gesten, 1998). As aresult, another observer
concluded that “psychiatric treatment is often paid for
by patients out-of-pocket, precisely to avoid creating a
record over which a patient has little or no control”
(Alpert, 1998, p. 89).

Surveys of the general public also indicate that
privacy of health care information is a major concern.
For example, 27 percent of the respondents to a 1993
Harris survey believed that health care information
about them had been improperly disclosed, 11 percent
previously had decided to not file an insurance claim
because of privacy concerns, and 7 percent had decided
to forego care because of concern that information that
would be generated in care might harm their
employment possibilities or other opportunities (Louis
Harris & Associates, 1993).

These findings suggest a dilemma for individuals
who may wish to pursue treatment for mental illness
and for treatment providers. All available data indicate
that confidentiality of health care information is a
significant concern for individuals. The evidence also
indicates that people may become less willing to make
disclosures during treatment if they know that
information will be disseminated beyond the treatment
relationship. At the same time, the caregiver is ethically
obligated to disclose to the client the limits on
confidentiality: A failure to reveal the limits of
confidentiality seriously threatens the therapeutic
relationship and the provider’s credibility. As a result,
treatment may be compromised, and the patient may
terminate treatment prematurely (Kremer & Gesten,
1998).

In short, available research supports the conclusion
that strong confidentiality laws are critical in creating
assurances for individuals seeking mental health
treatment and thereby increasing willingness to
participate in treatment to the degree necessary to
achieve successful outcomes. However, the present
legal framework does not provide strong, consistent
protection of confidentiality in many instances.

It is important to note that additional factors may
contribute to concern that confidentiality may be
breached and, in turn, an unwillingness on the part of
consumers to disclose or share information. In many
instances, these factors cannot be addressed through
stronger legal protections alone. In given clinical
settings, for example, concern may stem from the
existence of crowded or open facilities, frequent
changes in clinical staff, language differences, cultural
considerations, and other constraints that would limit
establishing a trusting therapeutic relationship. In
addition, individuals may not wish to disclose
information regarding “pre-existing conditions” for fear
it may result in a loss of insurance coverage as well as
privacy.

441

Confidentiality of Mental Health Information

Current State of Confidentiality Law
One expert has described the current law governing the
confidentiality of health care information as a “crazy
quilt of Federal and state constitutional, statutory,
regulatory and case law” that “erodes personal privacy
and forms a serious barrier to administrative
simplification” (Waller, 1995, p. 44). This aptly
describes the current legal framework for the
confidentiality of mental health and substance abuse
information as well.

There is at present no national standard for the
confidentiality of health care tnformation in general or
mental health information in particular. Rather, each
state has laws that establish confidentiality rules and
exceptions. In response to a serious public policy
concern that the criminal justice ramifications of use of
illegal substances would significantly deter individuals
from seeking substance abuse treatment, a national
standard governing the confidentiality of substance
abuse treatment information was codified. However,
there often are significant differences among states and
between the state and Federal requirements, which can
create problems for the administrators of health care
plans and for those providing treatment for people with
co-occurring mental illness and substance abuse
disorders.

Overview of State Confidentiality Laws

As noted, nearly all states have discrete statutes
addressing the confidentiality of mental health records
and information. In a handful of states, a general law
applicable to all health care information applies. In
some states, the mental health confidentiality statute
applies only to information gathered when a state
facility provides treatment; in others, it applies to
mental health treatment regardless of the auspice of
care.

One common criticism of health care information
laws generally is that they apply primarily to
information gathered in the course of treatment and in
the possession of the caregiver. This means that
different standards apply to the distribution of
information held by others not party to the treatment
relationship. This observation fairly characterizes most
Mental Health: A Report of the Surgeon General

state mental health laws as well. The focus of the laws
tends to be upon the clinical relationship, and often
what happens to information once it is disseminated
beyond the clinical relationship is unaddressed. Many
of the reform proposals advanced in recent years would
apply confidentiality rules to other parties that come
into possession of protected information, although the
proposals vary regarding application of a national
standard to employers, schools, correctional facilities,
and other settings in which a significant volume of
health care is provided. In addition, the proposals vary
regarding the question of whether the individual has a
legal right to consent to disclosures beyond the clinical
relationship: How this question is resolved will
determine in large measure whether individuals in the
role of patient believe that confidentiality protections
are strong enough to warrant seeking treatment.

While the various reform proposals differ in detail,
few dispute the need to extend the obligation to protect
confidentiality to other parties. In the early 1980s, one
expert found that between 25 and 100 people had
access to an individual inpatient record (Siegler, 1982),
a number that has grown in recent years. In addition, as
health care delivery and payment have ‘become
increasingly complex and as provider networks rather
than individual practitioners increasingly provide care,
the number of people who may come into possession of
health care information continues to expand. One
observer describes three “zones” of users of personal
health care information. “Zone one” users are involved
in direct patient care, while “zone two” users are
involved in support and administrative activities like
payment and quality of care reviews. “Zone three”
users include public health agencies, social welfare
agencies, researchers, and direct marketing firms
(Westin, 1993). Some of these parties traditionally have
had ready access to health care information; others, for
example, utilization review managers and direct
marketing firms, are comparatively new to health care.
Whether a party that has access to information should
have access to that information is a separate question
that lies at the heart of much of the debate about
confidentiality.

Exceptions to Confidentiality

Each state law creates exceptions to confidentiality.
While state laws vary regarding the number and type of
exceptions permitted, the most common exceptions to
confidentiality are discussed briefly below. As a
prefatory note, many experts assume that client consent
presumptively should be required prior to most if not
all disclosures, and that any waiver of confidentiality
by the client must be truly informed (Campbell, 2000).
However, as the discussion below suggests, many state
laws permit a variety of disclosures without client
consent, raising questions regarding the adequacy of
these laws in protecting client confidentiality in the
current environment.

Consent by the Person in Treatment
The most common exception to confidentiality is when

the person who is or has been in treatment consents to
the waiver of confidentiality. (For minor children, this
right rests with the parents or legal guardians.) For
example, the practitioner may ask that the person sign
a consent form authorizing the release to the
practitioner of other health care records. This reflects
the fact that the right to confidentiality is designed
primarily to protect the patient, not other parties, from
unwanted disclosures, and that the right to waive
confidentiality presumptively rests with the patient. In
some instances, where confidentiality is waived, the
patient nonetheless may wish to avoid release of certain
information in any circumstances and direct that the
provider not include in the file sensitive personal
information—for example, sexual orientation or marital
infidelities.

Although each state provides for waiver of
confidentiality by the person in treatment, few states
spell out in statute the elements of a valid consent. This
is in contrast to the Federal laws on substance and
alcohol treatment information, discussed below, which
provide explicit details regarding the content of a valid
consent.

In addition, the various reform proposals that have
been introduced in Congress and elsewhere each
contain criteria for consent. These typically include
requirements that consent be in writing, name the
individual or entity to which disclosure of information
is to be made, identify the purpose or need for
disclosure and the type of information to be disclosed,
and state the period for which the consent is effective.
However, it should be noted that the proposals differ on
the question of the degree to which a person’s consent
to disclosure would be truly voluntary. Many of the
proposals suggest that a person’s treatment, Or
reimbursement for treatment, may depend on whether
the person consents to have his or her records
disclosed. This may raise questions about how
“voluntary” such consent is, in fact, given that access
to the services sought may be contingent upon agreeing
to the release of information divulged during treatment.

Disclosure to the Client

Many, though not all, state laws provide that
individuals have a right of access to health care records
containing information about them. Some provide that
a clinician may restrict access to the record, if in the
clinician’s judgment, access would cause harm to the
client. Some statutes also provide that a clinician may
restrict access to particular parts of the record if access
might harm the client or if third parties provided
information with the expectation that it would be held
in confidence. Some experts have suggested that limiting
client access undercuts the principle that information
contained in the record belongs first to the client
(Campbell, 2000). Each reform proposal articulated to
date provides for access by an individual to health care
information. These proposals assume that access is
necessary both so that the individual is fully informed
regarding his or her health care and so that the individual
can correct information that might be erroneous.
Generally, for minor children, parents have the right of
access. Some experts have suggested that in the case of
children, even in instances in which the parents or
guardians control the information, there should be a right
for the child to establish a “zone of privacy” for certain
“intimate” information. Such information could not be
accessed by responsible adults except when the clinician
determines that it indicates imminent danger of harm to
self or others (Melton, 2000).

443

Confidentiality of Mental Health Information

Disclosure to Other Providers

An important question in an era in which networks of
providers provide increasing amounts of care is whether
and how confidentiality laws permit disclosure to other
caregivers. The majority of states that address this issue
typically provide for disclosure to others involved in
providing care. Some states require consent before
information can be disclosed, although the majority of
state laws that address the issue do not. Few states
address the question of information exchange within a
network of providers.

Some proposals before Congress would permit
disclosure of information to other care providers without
requiring consent. Others would require consent prior to
any disclosure. At least one presumptively would permit
disclosure, but give the individual the opportunity to
“opt out” of a particular disclosure. As noted earlier,
conditioning access to treatment (or to reimbursement)
on a waiver of confidentiality calls into question the
voluntariness of the waiver.

Disclosure to Payers

Many states have provisions in their mental health
confidentiality laws that permit disclosure of otherwise
confidential information as necessary to obtain
reimbursement or other financial assistance for the
person in treatment. Most of these statutes were written
before the emergence of managed care and third-party
utilization review. Therefore, most state laws that create
this exception to confidentiality impose few if any
limitations on the type or amount of information that can
be disclosed to obtain reimbursement, and most do not
explicitly require consent prior to disclosure. There are
exceptions that might prove useful models to other
jurisdictions. For example, New Jersey restricts
disclosure of information from licensed psychologists to
third-party payers. The statute permits disclosure only if
the client consents, and if disclosure is limited to: (1)
administrative information; (2) diagnostic information:
(3) the legal status of the patient; (4) the reason for
continuing psychological services; (5) assessment of the
client’s current level of functioning and level of distress:
and (6) a prognosis, limited to the minimal time
treatment might continue (New Jersey Statutes). The
Mental Health: A Report of the Surgeon General

Commonwealth of Massachusetts also limits disclosures
to third-party payers of mental health information
(Massachusetts Annotated Laws).

As noted, the proposals that have been made to date
to create a national standard for the confidentiality of
health care information differ in how they treat
disclosures to other providers and payers. Some
proposals would require patient consent prior to any
disclosure. Others would presume consent. Still others
would permit the individual to “opt out” of specific
disclosures. The last would require that individuals be
given the names of providers and payers that might be
provided access to information; the individual could then
decline permission to provide information to specific
payers or providers.

The question of how much information should be
made available to third-party reviewers is a contentious
one. As the research described earlier suggests, the
willingness to self-disclose, or to participate in
treatment, appears to be contingent at least in part on the
strength of confidentiality provisions. As the amount and
sensitivity of information made available to third- party
reviewers increases, a corresponding decrease on the
part of some individuals to seek treatment is likely.

Disclosure of Information to Families
An issue of some controversy in mental health is wheth-
er families should be provided information regarding
their adult child in certain circumstances. As a general
rule, access to information in circumstances involving
minor children is provided to parents or the legal
guardian of the child, until the child attains the age of
majority or an age at which the child is permitted under
state law to make his or her own treatment decisions.
Some states provide that parents acting in the role of
caregiver may be given information, usually limited to
diagnosis, prognosis, information regarding
treatment, specifically medications. Of those states with
these or similar provisions, some permit the disclosure of
this information without the consent of the individual,
while others require consent, with some providing for
administrative review if consent is not given. All of the
reform proposals that have been introduced before
Congress provide for the disclosure of limited

and

444

information regarding an individual’s current health
status to family or next of kin. Consent generally is not
required, although most provide the patient with the
opportunity to request that information not be provided
in such circumstances. It should be noted that in the
context of mental health treatment, there is disagreement
regarding this issue, particularly on the issue of prior
consent. Family advocates often take the position that a
family in a caregiving role should have access to some
types of information whether or not the individual
specifically has consented to the disclosure, because it 1s
necessary to play a caregiving role (Lefly, 2000).
Advocates for consumer-recipients often argue that
consent should be required, because the right to
confidentiality belongs to the recipient of services, and
because there may be intrafamily conflicts that could be
exacerbated by the release of information to family
members.

Oversight and Public Health Reporting
All states have provisions that allow entities with

oversight responsibilities to have access to medical
records without client consent. Similarly, states mandate
that certain types of information be made available to
public health officials for various public health purposes,
for example, the reporting of infectious diseases or the
prescription of particular types of medication. The
various reform proposals would do little to change this
type of reporting, although at least one would create a
preference for the use of records in which personal
identifying information has been deleted.

Research

The confidentiality of individually identifiable
information gathered in the course of conducting
research can be protected from compelled disclosure by
obtaining federally issued “certificates of confiden-
tiality.” These certificates are issued through the Depart-
ment of Health and Human Services upon application by
the researcher for research which involves the collection
of specific types of sensitive information judged
necessary to achieve the research objectives. The
importance of the protection against disclosure afforded
by Federal “certificates of confidentiality” increases as
research expands its traditional boundaries to include
genetic information of uncertain/evolving clinical
relevance. An individual may voluntarily consent to the
disclosure of information obtained in the course of
protected research. In addition, the researcher may
identify certain specific information which may be
voluntarily disclosed in participants’ consent forms.

States that address access to confidential information
for research purposes generally provide for access
without consent if it is impracticable to obtain individual
consent and the research has been approved by the
agency with approval authority under the state law. It
should be noted that regardless of the aforementioned
protections, information obtained in protected research
studies, which finds its way into the participant’ s regular
medical chart, is not covered.

Disclosure to Law Enforcement Agencies

Many state laws limit access to information regarding
people with mental illness by law enforcement officials
to situations in which an individual who has been
hospitalized has left the hospital and not returned, or to
situations in which a crime has been committed on the
grounds of a treatment facility. A handful of state laws
provides access for the purpose of investigating health
care fraud. In contrast, most of the reform proposals
designed to create a national standard provide
comparatively broad access by law enforcement
officials. Others would limit discovery to situations in
which law enforcement could demonstrate, usually by
clear and convincing evidence, that disclosure is
necessary.

This is a controversial issue. Some professional and
advocacy groups believe that broad access by law
enforcement officials will lead to unwarranted invasions
of privacy and encourage “fishing expeditions” in which
material revealed during treatment becomes the basis of
criminal prosecution. On the other hand, some have
argued that broad access is necessary, particularly to
investigate health care fraud in which the conduct of the
provider rather than the client is at issue. The current
Federal substance abuse laws provide for a stricter
standard for access to information by law enforcement
officials than is provided for in many of the proposals

Confidentiality of Mental Health Information

before Congress. This strict standard is based on the
assumption that broader access would have a negative
effect on the willingness of people to seek substance
abuse treatment, if seeking treatment might lead to
criminal prosecution. While these provisions seem to

- have met their intended goal of encouraging individuals

445

to seek treatment, there is no evidence that stricter
Federal standards for access to substance abuse
information have impeded law enforcement efforts.

Disclosure to Protect Third Parties
In 1976, the California Supreme Court ruled that a

mental health professional has an obligation to take steps
to protect identified third parties whom the professional
reasonably believes might be endangered by a client
(Tarasoff v. Regents, 1976). This decision was criticized
by a number of groups, including the American
Psychiatric Association and the American Psychological
Association, on the grounds that it required mental
health professionals to perform a task for which they
were ill-suited (that is, assess future risk) and that it
would compromise confidentiality. Since the court’s
decision, many states, either through statute or judicial
decision, have addressed this topic.

The majority of states that have done so through
statute provide that a mental health professional who
concludes that his or her client represents an imminent
danger to an identified third party may take steps,
including notifying the individual or law enforcement
officials, to protect the third party without becoming
liable for a breach of confidentiality. These states also
typically provide that the clinician will not be liable if he
or she decides not to act—rather, the statutes give the
clinician discretion in deciding how to proceed.

In addition, all states permit or mandate disclosure
in other situations where a third party might be at risk
for harm. Child abuse and elder abuse reporting laws are
examples. Most of the proposals to create a national
standard permit disclosures necessary to protect an
identifiable third party when the caregiver concludes that
there is a risk of serious injury or death, or when
disclosure is necessary to protect the patient from serious
harm.
Mental Health: A Report of the Surgeon General

Federal Confidentiality Laws

An individual who seeks treatment for mental illness
runs the risk of discrimination and invasion of privacy if
information disclosed during treatment becomes known
to third parties. An individual who seeks treatment for a
substance use problem may reveal information that if
disclosed could become the basis for criminal
prosecution. The prospect of prosecution as a price of
entering treatment quite clearly may create disincentives
to seek treatment.

In an effort to create incentives for people with
substance use and alcohol problems to seek treatment,
Congress enacted perhaps the strictest confidentiality
law extant. As a result, Federal law governs the
confidentiality of information, obtained by federally
assisted, specialized substance abuse treatment pro-
grams, which would identify a patient as receiving treat-
ment services (42 U.S.C. 290dd-2; 42 C.F.R. 2.1, et
seq.).

Disclosure of patient identifying information by
federally assisted programs is permitted only in
explicitly delineated circumstances. The person
receiving services can waive confidentiality, but consent
must be written; name the client, the program making the
disclosure, and the intended recipient of the information;
state the purpose of the disclosure and the information to
be disclosed; be signed by the client or representative of
the patient where appropriate; and state the duration of
the consent and conditions under which it expires. In the
absence of consent, disclosures may be made only in the
circumstances permitted by the regulations. For example,
information may be exchanged within the program
providing services, but only to the extent necessary to
provide services. In other words, information is to be
exchanged even within the treatment program on a “need
to know” basis. Disclosures may be made without
consent to other service providers if providers have
entered into a “qualified service agreement” with the
treating program. This is to permit the treating program
to obtain collateral services, for example, blood work,
that are not performed by the program itself. Disclosures
to other providers not part of a qualified service
_ agreement can only occur with consent.

446

Disclosure also is permitted to law enforcement
officials when there was a crime committed on the
premises or against the personnel of the treatment
program. Even in this case, information provided is to be
limited initially to the name, address, and last known
whereabouts of the individual who committed or
threatened to commit a crime. Other circumstances in
which disclosures are permitted without consent include
medical emergencies as defined in the regulations; child
abuse reports; court orders, when the court has followed
procedures established in the regulations; and in criminal
investigations of “extremely serious crimes” as defined
in the regulations (Center for Substance Abuse
Treatment, 1994). The statute and regulations do not
address, and therefore do not permit, disclosures to
families of clients or to payers without consent of the
client.

The Federal law is generally much more detailed
than any state mental health law in delineating the
conditions that must be met before disclosures can
occur. In addition, as this brief summary suggests, state
mental health laws and the Federal alcohol and
substance abuse laws differ substantively in many
respects. This may create difficulties for providers caring
for people with co-occurring mental illness and
substance use disorders, because the provider may be
operating under two quite different legal standards in
considering requests for information regarding the same
individual. This issue is discussed in more detail below.

Other Federal statutes have limited applicability to
the confidentiality of health care information. The
Privacy Act of 1974 prohibits disclosure of an
individual’s record without prior written consent and
provides access to review, copy, and correct records.
However, the Act applies only to federally operated
hospitals and to research or health care institutions
operated pursuant to Federal contracts, so it does not
cover the vast majority of organizations and entities
collecting health care information (Gostin, 1995). In
addition, identifiable
information is permitted if necessary for the “routine

disclosure of personally

use” of the receiving facility, a very broad exception.
Finally, the Americans With Disabilities Act (ADA)
of 1990 requires employers to maintain medical
information in separate files and on discrete forms. As
the ADA is enforced, it may lead to increased protection
of the privacy of medical records at the workplace. In
relevant part, however, the ADA applies only to people
with a disability as defined by the statute, and to actions
taken by employers based on an individual’s disability.
Therefore, the ADA provides only limited confidential-
ity protection; it does not create a general right to
medical privacy within the workplace.

Potential Problems With the Current

Legal Framework
There is general consensus that the current legal
framework for protecting the confidentiality of health
care information is inadequate. There are significant
differences the states in addressing
confidentiality issues. While a state-by-state approach
may have been good policy before recent trends in the
organization and financing of health care, the increasing
dominance of the health care industry by providers and
payers doing business on a national scale has caused
many to advocate for a national confidentiality standard.

This lack of uniformity may be exacerbated in the
context of mental health care. There are differences in
standards not only among the states, but between the
states and the Federal government. Separate state
standards for mental health information and Federal
standards for alcohol and substance use information may
be problematic in an era in which it has become evident
that many people with mental illnesses also have
substance abuse or alcohol problems. In addition, there
are often within the same state a number of statutory
provisions that address the confidentiality of mental
health information. These may include the state mental
health law (which may apply to all mental health
information or only information held by state-operated
providers), judicial privilege statutes, laws applicable to
licensed professionals, and various state oversight laws.
This may make it difficult even within a particular state
to articulate the state law on the confidentiality of mental
health information.

Many state mental health laws also lack provisions
that most reform proposals contain. For example, many
states do not articulate standards for client consent to

among

447

Confidentiality of Mental Health Information

disclosure. In contrast, most reform proposals require
that consent be in writing, be of definite rather than
indefinite duration, and specify recipients of information
rather than provide open-ended consent to disclose.
Many state laws providing for disclosure of mental
health information to payers without client consent were
written before the increased demands for information
common today. Access by other providers is variable as
well. Many states provide for comparatively mild
penalties for the breach of confidentiality. In contrast.
most reform proposals would considerably strengthen
penalties for violating confidentiality protections.

As the debate regarding a national standard
proceeds, there are two additional issues of consequence
for those considering the confidentiality of mental health
information. The first is the question of preemption.
Most reform proposals considered by Congress in recent
years would establish a national standard that would
become the minimum standard for health care
information. The standard would preempt (or supercede)
any state laws that provided less protection than that in
the national standard. The Secretary of the Department
of Health and Human Services recommended such an
approach in a recent report to Congress entitled,
Confidentiality of Individually Identifiable Health
Information. Should a national standard be enacted,
determining whether a state’s mental health law provides
more or less protection than a national standard may be
difficult in at least some cases. For example, in one state,
the law permits disclosures without consent to some but
not all types of providers. One of the proposals to
establish a national standard would permit disclosures to
be made to other providers without the consent of the
individual, but would give the individual the opportunity
to “opt out” of disclosures to specified providers. In this
example, it is difficult to determine whether the state law
in question is more or less protective than the proposed
national standard. On the one hand, the state law in this
example is more restrictive than the reform proposal
because it limits the types of providers that can receive
information without consent. On the other hand, it is
weaker than the reform proposal because it does not
provide the individual with an opportunity to decline
permission to disclose to those providers. The problem
Mental Health: A Report of the Surgeon General

is not insurmountable: in this example, one solution
might be to apply the opt-out provision of the national
standard to that part of the state law that permits some
types of disclosures without consent. At the same time,
the current condition of many state mental health laws
may make application of the preemption principle
difficult.

A second important question is whether there should
continue to be separate legal standards for mental health
confidentiality and for substance use and alcohol use
confidentiality. The reform proposals advanced to date
generally would leave the Federal substance use law
intact. This would have the practical effect of locking in
the disparate standards that currently exist for mental
health information (governed by state laws) and
substance and alcohol use information (governed by the
Federal law). Some experts disagree with the notion of
having discrete, disease-based standards, on the ground
that there are other diseases that raise legitimate
concerns regarding privacy that do not receive special
protection (Gostin, 1995). Others would retain the strict
protections currently available to substance and alcohol
use data, while extending the same protections to mental
health information. This report does not endorse either
perspective. However, it would be useful to examine
more closely whether disparate standards have an effect
on clinical practice and on the privacy expectations of
individuals in treatment, particularly those with both a
mental illness and a substance abuse diagnosis.

Summary
There are many reasons why an individual with a mental
illness might decide not to seek treatment. For example,
some people might forego treatment for financial
reasons. Others might decide that the risk of stigma and
discrimination that people with mental illness still
encounter is too high a price to bear. In the latter
situation, being able to provide assurances that the
principle of confidentiality receives strong protection
may make the difference in the decision to enter and
participate fully in treatment.

Confidentiality is a matter of both ethical and legal
concer. As noted earlier, each of the health care
professions endorses confidentiality as a core matter.

448

However, it is the law that establishes the basic rules that
govern confidentiality in practice. The law can expand
confidentiality, as the U.S. Supreme Court did when it
ruled that a psychotherapeutic privilege would apply in
Federal court. The law also can decide that the principle
of confidentiality must yield to other values, as the
California Supreme Court did when it decided that
mental health professionals had an obligation to protect
third parties whom the professional reasonably
concluded could be endangered by a client in treatment.

It is clear that confidentiality is not absolute. There
are other competing values that require its breach in
certain circumstances. However, it also seems clear that
there are significant gaps in the current legal framework
that protects the confidentiality of mental health
information. Consideration of an appropriate level of
legal protection for mental health information should
acknowledge that mental illness continues to be a
category of illness that may subject a person receiving a
diagnosis to discrimination and other disadvantages.

In the absence of strong confidentiality protections,
some individuals with mental illness may decide that the
benefit of treatment is outweighed by the risk of public
disclosure. This would be harmful not only to the
individual, but to a public that has a stake in the mental
health of its members. The U.S. Supreme Court
summarized this public interest succinctly in the decision
quoted at the beginning of this section:

The psychotherapist privilege serves the public
interest by facilitating the provision of
appropriate treatment for individuals suffering
the effects of a mental or emotional problem.
The mental health of our citizenry, no less than
its physical health, is a public good of
transcendent importance. (Jaffee v. Redmond,
1996)

It is to be hoped that this public good, as well as the
private good represented by successful treatment for
mental illness, governs the continuing debate regarding
the protection of confidentiality.
Conclusions

In an era in which the confidentiality of all health care
information, its accessibility, and its uses are of concern
to all Americans, privacy issues are particularly keenly
felt in the mental health field. An assurance of
confidentiality is understandably critical in individual
decisions to seek mental health treatment. Although an
extensive legal framework governs confidentiality of
consumer-provider interactions, potential problems exist
and loom ever larger.

1. People’s willingness to seek help is contingent on
their confidence that personal revelations of mental
distress will not be disclosed without their consent.
The U.S. Supreme Court recently has upheld the
right to the privacy of these records and the
therapist-client relationship.

Although confidentiality issues are common to
health care in general, there are special concerns for
mental health care and mental health care records
because of the extremely personal nature of the
material shared in treatment.

State and Federal laws protect the confidentiality of
health care information but are often incomplete
because of numerous exceptions which often vary
from state to state. Several states have implemented
or proposed models for protecting privacy that may
serve as a guide to others.

States, consumers, and family advocates take
differing positions on disclosure of mental health
information without consent to family caregivers. In
states that allow such disclosure, information
provided is usually limited to diagnosis, prognosis,
and information regarding treatment, specifically
medication.

When conducting mental health research, it is in the
interest of both the researcher and the individual
participant to address informed consent and to
of
proceeding. Federal regulations require informed
consent for research being conducted with Federal
funds.

New approaches to managing care and information
technology threaten to further erode the
confidentiality and trust deemed so essential

obtain certificates confidentiality before

449

Confidentiality of Mental Health Information

between the direct provider of mental health services
and the individual receiving those services. It is
important to monitor advances so that confidentiality
of records is enhanced, instead of impinged upon, by
technology.

8. Until the stigma associated with mental illnesses is
addressed, confidentiality of mental health
information will continue to be a critical point of
concern for payers, providers, and consumers.

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