VA Health Care: Observations on Medical Care Provided to Persian Gulf Veterans

Published by the Government Accountability Office on 1997-06-19.

Below is a raw (and likely hideous) rendition of the original report. (PDF)

                          United States General Accounting Office

GAO                       Testimony
                          Before the Subcommittee on Health, Committee on
                          Veterans’ Affairs, House of Representatives

For Release on Delivery
Expected at 9:30 a.m.
Thursday, June 19, 1997
                          VA HEALTH CARE

                          Observations on Medical
                          Care Provided to Persian
                          Gulf Veterans
                          Statement of Stephen P. Backhus, Director
                          Veterans’ Affairs and Military Health Care Issues
                          Health, Education, and Human Services Division

VA Health Care: Observations on Medical
Care Provided to Persian Gulf Veterans

              Mr. Chairman and Members of the Subcommittee:

              We are pleased to be here today to discuss our ongoing evaluation of the
              medical care the Department of Veterans Affairs (VA) provides to veterans
              who are suffering from illnesses they attribute to their military service
              during the Persian Gulf War.

              Persian Gulf veterans have reported an array of symptoms including
              fatigue, skin rashes, headaches, muscle and joint pain, memory loss,
              shortness of breath, sleep disturbances, gastrointestinal conditions, and
              chest pain. VA’s program to serve Persian Gulf veterans is a four-pronged
              approach addressing medical care, research, compensation, and outreach
              and education. The medical care portion includes a medical examination,1
              inpatient and outpatient treatment, specialized evaluations at four referral
              centers, and readjustment and sexual trauma counseling. More than 65,000
              Persian Gulf veterans have completed the medical examination, or
              “registry exam.”

              My comments this morning will focus on information we have gathered to
              date, at your request, on (1) veterans’ satisfaction with VA care and (2) the
              extent to which veterans are diagnosed, counseled, treated, and
              monitored. We will also discuss a model of care at one medical center that
              Persian Gulf veterans seem to find more responsive to their needs.

              Our information is based on observations and opinions from officials at VA
              headquarters; VA’s Atlanta Veterans Integrated Service Network office;
              medical centers in Washington, D.C., Atlanta, and Birmingham; referral
              centers in Washington and Birmingham; and veterans service
              organizations; and from dozens of Persian Gulf veterans, both individually
              and in group interviews. We also reviewed a sample of medical records for
              20 veterans who had received the registry exam in two of the three
              medical centers we visited to evaluate the registry exam process. We did
              not attempt to determine whether the tests, evaluations, and treatment
              provided to these veterans were appropriate but rather the extent to which
              VA followed its guidelines for evaluation and treatment and whether
              Persian Gulf veterans were satisfied with the treatment received. While the
              scope of our work to date is not broad enough to generalize to conditions
              throughout VA, we believe that, along with previous studies of these issues,
              our work does serve as an indicator of the medical care that Persian Gulf
              veterans receive.

               The Persian Gulf Registry Exam consists of a medical history, physical examination, and laboratory
              tests. The results of the examination are entered into a database that contains information on all
              Persian Gulf veterans who have received the examination.

              Page 1                                                                         GAO/T-HEHS-97-158
VA Health Care: Observations on Medical
Care Provided to Persian Gulf Veterans

The Persian Gulf veterans that we have talked with and who wrote to us,
along with veterans we heard about through veterans service
organizations, appeared to be confused by, frustrated with, and mistrustful
of VA and the care they received for their illnesses. While veterans
appreciated the efforts of some individual VA staff, they expressed dismay
with the “system,” which often extends beyond VA to other agencies and,
for some, to the federal government in general. Specifically, veterans
continued to cite delays in receiving services, the nonsympathetic
attitudes of some health care providers, the sometimes cursory nature of
the registry exam, poor feedback and communication with health care
personnel, and a lack of postexamination treatment.

On the basis of our work to date, it does not appear that VA’s guidance
regarding the evaluation and treatment of Persian Gulf veterans is being
consistently implemented in the field. We observed, for example, that
some physicians did not perform all of the symptom-specific tests
recommended by VA’s Uniform Case Assessment Protocol, which could
result in some veterans not receiving a clearly defined diagnosis for their
symptoms. We also found that personal counseling of veterans seldom
occurred. In addition, the form letters sent to veterans at the completion of
the registry exam did not always sufficiently explain the test results or
diagnosis, which leaves veterans frustrated. Physicians’ views were mixed
regarding the origin of the symptoms experienced by Persian Gulf
veterans. We heard and read physician comments indicating that they
believe Persian Gulf veterans’ problems are only “in their heads.”
However, other physicians displayed open attitudes about treating the
veterans’ symptoms and determining the origin of their illnesses.

Medical center personnel cited limited resources and increased workloads
as reasons their efforts are not as timely and responsive as they and
veterans would like. One medical center we visited had experienced
delays of up to 6 months in scheduling registry exams. However, steps are
being taken at certain VA facilities to improve service. For example, at one
medical center we visited, veterans now have the option of receiving
treatment in a Persian Gulf Special Program Clinic. The Clinic allows
veterans to receive primary care from medical staff experienced with Gulf
War veterans and their concerns and has established a focal point for
providing clinical management of Persian Gulf veterans’ care.

Page 2                                                     GAO/T-HEHS-97-158
                            VA Health Care: Observations on Medical
                            Care Provided to Persian Gulf Veterans

                            The Persian Gulf veterans we spoke with held several common
Persian Gulf Veterans’      expectations regarding VA health care. They expected to be scheduled for
Expectations Remain         the registry exam and tested in a timely manner. They expected doctors to
Unfulfilled                 listen to their symptoms and to take the problems they experienced
                            seriously by performing the necessary tests and evaluations in order to
                            reach a diagnosis. The veterans expected to be told their test results and to
                            receive counseling and consultation regarding the need for further testing
                            or treatment.

                            Veterans’ perceptions of what is provided, however, were considerably
                            different. Some veterans said they experienced delays in receiving the
                            registry exam and follow-up testing they requested. Once scheduled for
                            care, veterans said that some VA doctors and health care professionals
                            projected the attitude that the symptoms Persian Gulf veterans experience
                            are “all in their heads.” Some veterans commented that the exam they
                            received seemed too superficial to fully evaluate the complex symptoms
                            they were experiencing.

                            Veterans indicated that personal counseling is generally not provided on
                            the results of the registry exam and that this is true for veterans with
                            diagnoses as well as for those without. The form letter sent to veterans at
                            the completion of the exam generated considerable anger among Persian
                            Gulf veterans we talked with, who interpreted it to mean that since their
                            test results came back normal, the VA physician believed there was nothing
                            wrong with them. Even some veterans who received a diagnosis did not
                            understand their diagnosis or believe that their treatment was effective.
                            For example, several veterans believed their medications made them feel
                            worse and discontinued them on their own.

                            Many Persian Gulf veterans have received care from VA for what they
Extent of Services          believe are service-related illnesses. These illnesses are manifested in a
Provided to Persian         wide range of symptoms in multiple diagnostic categories. Although VA has
Gulf Veterans               developed comprehensive guidance for physicians to use in diagnosing
                            Persian Gulf veterans, it appears to be inconsistently followed.

Medical Services Provided   The medical care portion of VA’s approach is provided in a variety of
to Persian Gulf Veterans    settings. Of the total 697,000 veterans who served in the Persian Gulf War,
                            more than 65,000 have completed the registry exam, which is available in
                            most of VA’s 159 medical centers. More than 191,000 veterans have been
                            seen in VA’s outpatient care clinics; about 19,000 veterans have been

                            Page 3                                                     GAO/T-HEHS-97-158
                           VA Health Care: Observations on Medical
                           Care Provided to Persian Gulf Veterans

                           admitted to inpatient care in VA medical centers. Approximately 390
                           veterans have received special evaluations in referral centers in
                           Washington, D.C., Birmingham, Houston, and Los Angeles; and more than
                           79,000 have received readjustment counseling at VA’s Vet Centers.2

                           The diagnoses recorded in the registry exam database for Persian Gulf
                           veterans spanned a range of illnesses and diagnostic categories. About
                           25 percent of registry diagnoses were for musculoskeletal and connective
                           tissue disorders, approximately 15 percent for respiratory problems,
                           12 percent for gastrointestinal conditions, 14 percent for skin disorders,
                           16 percent for psychiatric conditions, 7 percent for cardiovascular and
                           circulatory problems, 7 percent for infectious diseases, and 5 percent for
                           injury and poisoning. Twenty-six percent of registry participants did not
                           have a definitive medical diagnosis, and 12 percent reported no health
                           problem.3 The latter group asked to participate in the examination because
                           they were concerned that their future health might be affected as a
                           consequence of their service in the Gulf War.

Evaluation and Treatment   In 1995, VA implemented a Uniform Case Assessment Protocol designed in
of Persian Gulf Veterans   conjunction with the Department of Defense and the National Institutes of
Do Not Appear to           Health to provide guidance to the physicians responsible for administering
                           the Persian Gulf Registry Exam. The protocol consists of two phases.
Consistently Follow        Phase I requires registry physicians to (1) obtain a detailed medical
Guidelines                 history, which includes collecting information on exposure to
                           environmental and biochemical hazards; (2) conduct a physical
                           examination; and (3) order basic laboratory tests. Phase II, which is to be
                           undertaken if veterans still have symptoms that are undiagnosed after
                           phase I, includes additional laboratory tests, medical consultations, and
                           symptom-specific tests. Veterans who do not receive a diagnosis after
                           phase II may be sent to one of VA’s four referral centers for additional
                           testing and evaluation. At the completion of these examinations, veterans
                           are to receive personal counseling about their test results. Once
                           diagnosed, veterans are generally referred to primary care teams for
                           treatment. VA has issued a contract to the Institute of Medicine to review
                           the appropriateness of its Uniform Case Assessment Protocol. The
                           Institute’s findings are due by the end of 1997.

                            These numbers represent individual veterans provided service in each setting. The same veteran could
                           be counted more than once if he or she was seen in more than one setting. Also, for outpatient visits,
                           VA’s data do not indicate whether the veterans were seen for Persian Gulf-related illnesses.
                            Percentages total more than 100 percent because some veterans have multiple diagnoses.

                           Page 4                                                                         GAO/T-HEHS-97-158
VA Health Care: Observations on Medical
Care Provided to Persian Gulf Veterans

Presently, the protocol remains VA physicians’ primary reference on how
to evaluate Persian Gulf veterans’ conditions and to obtain an accurate
diagnosis of the symptoms they report. According to VA’s guidance, the
veterans registry physician or designee is responsible for clinical
management of veterans on the registry and serves as their primary health
care provider unless another physician has been assigned this
responsibility. According to VA program guidance, the registry physician’s
essential responsibilities include counseling the veteran as to the purpose
of the examination, conducting and documenting the physical
examination, and personally discussing with each veteran the examination
results and need for additional care. The registry physician is also to
prepare and sign a follow-up letter explaining the results of the registry
examination and may initiate, if necessary, the patient’s further evaluation
at one of VA’s referral centers.

On the basis of our review of medical records and discussions with
program officials, including physicians, it does not appear that VA’s
guidance is being consistently implemented in the field. For example,
while the protocol mandates that veterans without a clearly defined
diagnosis are to receive additional baseline laboratory tests and
consultations, not all such veterans received the full battery of diagnostic
procedures. In some cases, physicians appeared to stop following the
protocol even though a clearly defined diagnosis had not been reached. In
addition, several of the records we reviewed indicated that the physician’s
diagnosis was simply a restatement of the veteran’s symptoms. For
example, a veteran who complained of major joint stiffness and sleep
disturbances was diagnosed as having major joint stiffness and sleep
disturbances. Furthermore, veterans suffering from undiagnosed illnesses
were rarely evaluated at VA’s referral centers; of the approximately 15,000
cases that VA reported as having undiagnosable illnesses, only 390 veterans
had been evaluated at a referral center. While VA has a quality assurance
mechanism for evaluating the care provided by its medical centers, that
mechanism neither ensures continuity of care for Persian Gulf veterans
nor provides for follow-up with veterans who need continued care. As a
result, veterans are often confused about the status of their ongoing

At two locations we visited, the registry physician was rarely involved in
the phase I examination process, instead delegating this task to a
physician’s assistant or nurse. In several cases, medical records indicated
that the registry physician did not even review the results of the
examination. After the phase I examination, instead of receiving ongoing

Page 5                                                     GAO/T-HEHS-97-158
VA Health Care: Observations on Medical
Care Provided to Persian Gulf Veterans

treatment managed by the registry physician, veterans were referred to
one of the medical center’s primary care teams for postexamination
treatment. Here, Persian Gulf veterans are seen by other doctors who treat
all veterans and do not concentrate on the specific needs of Persian Gulf
veterans. Veterans who expect treatment designed for those suffering from
Gulf War illnesses appeared more likely to express frustration and
disappointment with the care they received.

According to VA guidance, counseling the veteran about the examination
results is one of the key responsibilities of the registry physician.
However, our work to date suggests that personal counseling between
veterans and their physicians rarely takes place. Registry medical staff, as
well as veterans we talked with, stated that feedback on examination
results is typically provided through a form letter to veterans. The letter
generally states the results of laboratory tests and provides a diagnosis if
one was reached. In some instances, when laboratory results were
negative, the veteran perceived that VA does not believe there is a problem.
Even when a diagnosis is reached, the letter does not explain the meaning
of complex or uncommon medical terms.

We discussed these concerns with registry and other physicians as well as
VA Persian Gulf program officials. Several of the physicians we interviewed
believed they should have the flexibility to use their own clinical judgment
in determining which tests are necessary to establish a diagnosis and
treatment plan. One physician stated that a good physician should, in most
cases, be able to diagnose a veteran’s symptoms without using the more
complex battery of tests mandated by the protocol. We were told that
some of the phase II symptom-specific tests are invasive procedures that
could have serious side effects, and unless the tests are specifically
needed, they should not be given routinely just because a veteran has
symptoms. Other physicians resisted prescribing some phase II tests
because of the associated costs. Furthermore, some physicians told us that
they believed there was no physical basis for the symptoms Persian Gulf
veterans were experiencing and that these symptoms were often
psychologically based and not very serious. This attitude may contribute
to physicians’ lack of enthusiasm for the protocol exams.

We also noted that VA has established no mechanism to monitor treatment
outcomes for Persian Gulf veterans. The VA official responsible for the
Persian Gulf program told us that if monitoring of treatment outcomes
does occur, it will be initiated in primary care.

Page 6                                                     GAO/T-HEHS-97-158
                        VA Health Care: Observations on Medical
                        Care Provided to Persian Gulf Veterans

                        Medical center personnel often cited limited resources and increased
Medical Centers’        workloads as reasons their efforts were not as timely and responsive as
Efforts to Improve      they and veterans would like. Some facilities are taking steps to overcome
Care for Persian Gulf   the negative experiences of Persian Gulf veterans. For example, one of the
                        three medical centers we visited uses a different model to provide care to
Veterans                these veterans. At this facility, veterans have the option of receiving
                        treatment in a Persian Gulf Special Program Clinic. Although it operates
                        only on Tuesdays and Fridays, the Clinic allows veterans to receive
                        primary care from medical staff experienced with Gulf War veterans and
                        their concerns. Veterans are still referred to hospital specialists as
                        necessary but, unlike the other two facilities we visited, responsibility for
                        monitoring patients’ overall medical treatment is assigned to the Clinic’s
                        case manager. The case manager is a registered nurse who serves as an
                        advocate for veterans and facilitates communications between patients,
                        their families, and the medical staff. The specific steps that are to be used
                        in monitoring patient care had not been developed at the time of our visit.
                        The Clinic staff also interacts regularly with the Persian Gulf Advisory
                        Board, a local group of Persian Gulf veterans who meet weekly in the VA
                        medical center to discuss specific concerns.

                        Veterans we spoke with were pleased with the Clinic and supported its
                        continued operation. They believed that it reflects a VA commitment to
                        take seriously the health complaints of Gulf War veterans. They also
                        believed that the Clinic gives veterans access to physicians who are
                        sympathetic and understand the special needs of Persian Gulf veterans
                        and their families. In addition, veterans we talked with who use this
                        facility indicated a higher level of satisfaction with the care they received
                        than the veterans who use the two other medical centers.

                        Mr. Chairman, this concludes my prepared statement. We will continue to
                        assess these issues and will report our findings and conclusions at a later
                        date. I will be happy to answer any questions you or other members of the
                        Subcommittee may have.

(101602)                Page 7                                                       GAO/T-HEHS-97-158
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