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A
Guide To Primary Care For
People With HIV/AIDS, 2004 edition |
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Chapter
2
Approach To The Patient
John V. L.
Sheffield, MD
Gloria A. Casale, MD, MSPH
Basic
Elements of Care
TOP
What are
the special challenges of caring for patients with HIV/AIDS?
Providers need
to be mindful of several special issues:
- Patients
infected with HIV face a complex array of medical, psychological,
and social challenges. A strong provider-patient relationship,
the assistance of a multidisciplinary care team, and frequent
office visits are usually required to provide excellent care.
- The stigma
associated with HIV/AIDS places a major psychological burden on
patients. Confidentiality is critical, as is a careful assessment
of each patient's emotional support system.
- Ethnic minorities
are over-represented among people with HIV. Efforts to understand
and acknowledge the beliefs of patients from a variety of cultural
backgrounds are necessary to establish trust between providers
and patients.
- Providers
play a key role in the public health system's HIV prevention strategy.
Disease reporting, partner notification, and risk assessment are
important aspects of care.
- Many patients
have inaccurate AIDS information that can heighten their anxiety,
sabotaging treatment adherence and appropriate prevention behaviors.
They need assurance that HIV is a treatable disease and that with
successful treatment, patients may live indefinitely. They also
need to hear explicitly that HIV is transmitted through sexual
contact, intravenous drug use, and blood contact (perinatal or
other) and how they can prevent transmission to others.
What are
the important components of good HIV care?
The elements
that ensure good care for people with HIV/AIDS include mechanisms
for coordination and communication of care:
- Clinics
must offer a nonjudgmental and supportive environment because
of the sensitive nature of issues that must be discussed.
- A multidisciplinary
approach, utilizing the special skills of nurses, pharmacists,
nutritionists, social workers, and case managers is highly desirable
to help physicians address patients' needs regarding housing,
medical insurance, emotional support, financial benefits, substance
abuse counseling, and legal issues.
- Providers
and other clinic staff should be prepared to conduct appropriate
interventions and make timely referrals to community resources
and institutions.
- The primary
provider should coordinate care, with close communication among
providers across disciplines.
- Individual
office visits should be long enough to allow a thorough evaluation.
- Providers
must be able to see patients frequently for good continuity of
care, and clinic scheduling should be flexible so that patients
with acute problems can be seen quickly.
- A range
of medical resources, including providers with subspecialties
and laboratory expertise, must be in place (see Chapter 16: Clinic
Management).
- Patient
education is a vital aspect of care that begins during the initial
evaluation and continues throughout the course of care (see section
on Patient Education below).
What steps
can providers take to enhance care?
Providing comprehensive
care for patients infected with HIV requires a lot of time, attention
to detail, and a strong patient-provider relationship. Specifically,
the provider should do the following:
- Discuss
issues in a straightforward fashion to foster trust and openness.
- Be realistic
about the seriousness of HIV disease and yet, to instill hope,
be optimistic about the potential to restore health and to provide
comfort. Give accurate information regarding prognosis and the
real hope that antiretrovirals provide.
- Encourage
patients to learn all they can about their condition and take
an active role in decisions regarding their care.
- Anticipate
that significant time will be required for patient education (see
section on Patient Education below).
- Explicitly
outline clinic operations and expectations for provider-patient
communication.
- Plan to
see patients often and communicate regularly between visits to
answer questions, assess treatment effectiveness, and manage side
effects.
- Arrange
to see patients with acute problems quickly.
How can
providers help patients with HIV/AIDS cope with the emotional issues
they face?
Patients coming
to terms with HIV infection often experience a range of emotions,
including anger, fear, shock, disbelief, sadness, and depression.
Loss is a major issue for patients with HIV disease because health,
employment, income, relationships with friends, lovers, and family,
and hope may all be threatened. Many patients feel overwhelmed,
and providers need to recognize that a patient's emotional state
affects the ability to solve problems and attend to important medical
or social issues. Even patients who seem to be adjusting reasonably
well can find it difficult to keep all of the appointments that
are scheduled as they initiate care. Providers can do the following:
- Assess each
patient's emotional state and the availability of friends and
family for emotional support. Patients may feel hesitant about
seeking emotional support, and some will need counseling to help
them decide whether to disclose their diagnosis to friends, family,
or employers.
- Deliver
important information in easily understood terms and in small
amounts. Reassess patient understanding of crucial information
at subsequent visits, and repeat important information as necessary.
- Screen for
anxiety, depression (including suicidal ideation), and substance
use.
- Refer patients
to community resources for crisis counseling, support groups,
and, if appropriate, psychiatric treatment to help them achieve
emotional stability (see also Chapter 14: Mental Health Disorders).
- Assign a
case manager who can help reduce anxiety about keeping life in
order.
Stigma
and Discrimination
TOP
Why is stigma
associated with HIV/AIDS?
Stigma is founded
on fear and misinformation. Theodore de Bruyn has observed that
stigma is associated with HIV/AIDS because "it is a life-threatening
disease; people are afraid of contracting HIV; it is associated
with behaviors that are considered deviant; a belief that HIV/AIDS
has been contracted due to unacceptable lifestyle choices; and,
some believe it is the result of a moral fault which deserves punishment"
(de Bruyn, Theodore. Paper prepared for the Canadian HIV/AIDS Legal
Network. 1999).
Stigma can
adversely affect how patients are perceived by others and how they
view themselves. The stigma associated with HIV/AIDS is such that
individuals known to be or suspected of being infected with HIV
may be excluded from community activities and suffer isolation or
abandonment. Some patients may feel ambivalent about seeking medical
care if by doing so they risk disclosing their condition. Others
may have learned from experience to expect rejection and are therefore
untrusting of all care providers. It is essential for providers
to be supportive of patients dealing with the burden of stigma.
How can
providers support patients facing the stigma of fear of contagion?
The clinic
must be inviting, and all staff members must model behavior in this
area. For example, gloves should be worn only as appropriate during
physical exams and as consistent with universal precautions. There
should not be separate facilities or procedures for HIV-infected
patients. Patients and their families are often unaware that routine
household contact with a person with HIV poses no risk of contagion.
They should be educated about this but also taught what to do in
situations that do pose risk, such as bleeding.
How can
providers support patients who face stigma associated with being
gay, lesbian, bisexual, or transgender?
Demonstrating
respect and providing excellent care to patients with various cultural
backgrounds, beliefs, and sexual orientations define professionalism.
Providers should approach patients in an open and nonjudgmental
fashion and be familiar with medical management issues unique to
these populations, such as STD screening for men who have sex with
men (MSM) and high-dose hormonal treatment for transgender male-to-female
patients. Clinic staff members must also be respectful and supportive;
having staff who are familiar with gay and lesbian culture is a
natural way to create a welcoming environment. Providers and social
workers should be aware of community agencies with resources available
to people who are gay, lesbian, or transgender. In addition, providers
and clinic staff should be aware of special legal issues that affect
these populations. For example, designating a durable power of attorney
for medical decision making can be particularly important in states
that do not recognize same-gender partners as legal next of kin.
What other
special cultural issues affect patients infected with HIV?
Minorities
are disproportionately affected by HIV, and many people of color
with HIV disease have major socioeconomic problems such as poverty,
homelessness, lack of medical insurance, lack of acculturation,
and undocumented immigration status. All of these can make accessing
health care difficult and attending to health problems less of a
priority. A patient's cultural background influences health beliefs
and behaviors, and the effectiveness of provider-patient communication
may affect compliance with therapy. In addition, prior adverse experiences
may make some patients distrustful of medical care. For all of these
reasons, providers should do the following:
- Carefully
explore what each patient believes about his or her health, what
would be appropriate treatment, and who should be involved in
medical decision making.
- Use professional
interpreters to help overcome language barriers.
- Use case
managers to help overcome social barriers.
Confidentiality
and Disclosure
TOP
Why is confidentiality
especially important for patients with HIV disease?
Confidentiality
of medical information is always mandatory, but the stakes are particularly
high for patients infected with HIV, who risk losing medical insurance,
employment, or the support of friends or family if the wrong individuals
learn of their diagnosis. Unfortunately, fear and ignorance persist
regarding HIV transmission; people with HIV disease may be shunned
because of the incorrect belief that HIV can be transmitted via
casual contact. Although people with HIV disease are protected against
discrimination under provisions of the Americans with Disabilities
Act, discrimination can be difficult to prove, and there are strict
time limits after which charges of discrimination can no longer
be made.
What steps
should providers take to protect patient confidentiality?
By adhering
to the newly implemented Health Insurance Portability and Accountability
Act (HIPAA) regulations, providers are protecting patient confidentiality.
Personnel policies should reinforce measures such as requiring that
papers and computer screens containing patient identifying information
not be left unattended and documenting whether phone messages can
be left for the patient, and if they can, with whom.
How can
providers help patients decide whom to disclose their HIV status
to?
Patients with
a support network function better than those who are isolated. However,
patients' fear of disclosure is often well founded, and providers
must find a balance between accepting patients' unwillingness to
disclose and the need to develop support networks. Patients may
find support groups or individual psychotherapy sessions beneficial
in deciding to whom and when to disclose.
The sex and
needle-sharing partners of people with HIV need to be informed about
their possible exposure to HIV. The local health department should
be able to either assist patients in making these disclosures or
provide anonymous partner notification for them.
What public
health role do providers play in the HIV epidemic?
Primary care
providers must also consider their public health role in curbing
the spread of HIV. The nationwide increase in the incidence of syphilis
and gonorrhea, especially among MSM, suggests that the advent of
potent antiretroviral therapy has resulted in relaxed adherence
to safer sex recommendations. All patients with a diagnosis of AIDS
and, in many states, those with a positive HIV test must be reported
to the State health department. Laws vary by state regarding reporting
requirements and subsequent notification of potentially exposed
individuals, but the name of the source contact is never divulged
to the person being notified. Providers should become familiar with
the laws of their jurisdiction by contacting their health departments.
(The Association of State and Territorial
Health Officers provides links to all State health departments.)
Providers are
required to do the following:
- Inform patients
whose positive HIV or AIDS status must be reported to the State
health department, tell them if partner notification is required,
and explain what they should expect regarding efforts that must
be made by the patient, provider, or health department to notify
sex partners or individuals who may have been exposed to HIV through
their needle sharing. Assure them that the patient's name is always
kept confidential, and is never given to potentially exposed individuals
by the Health Department.
- Carefully
assess patients' risk-taking behaviors, educate them regarding
HIV transmission, and perform STD screening (see question on STD
screening in this chapter).
- Provide
counseling to encourage safer sexual practices (see section on
Risk Assessment and Counseling below) and make referrals to drug
rehabilitation or needle exchange centers (see Chapter 13: Management
of Substance Abuse).
The recently released Federal guidelines on prevention for persons
living with HIV, which contain recommendations for providers,
are listed in the Suggested Resources below. (See also Chapter
4: Prevention of HIV in the Clinical Care Setting.)
Patient
Education
TOP
What does
patient education involve?
The provider
should assess the patient's understanding of HIV disease and begin
patient education at the initial evaluation. To make sound decisions
regarding treatment, the patient must understand certain medical
information, including:
- The critical
role of the patient in his or her own care
- Natural
history of HIV disease and consequences of immune system destruction
- How HIV
is transmitted
- The meaning
of the viral load and CD4 count
- The beneficial
impact of antiretroviral drugs
- Early signs
and symptoms of opportunistic illnesses
- The role
of prophylactic agents
What should
patients understand before beginning antiretroviral therapy?
Before initiating
antiretroviral therapy, patients must be fully aware of:
- The importance
of adhering completely to the treatment regimen
- The possibility
of drug resistance and loss of treatment options
- The proper
timing of pills and coordinating pill-taking with meals
- Possible
side effects and long-term drug toxicities
- The option
to stop treatment at any time
In addition,
patients should express a commitment to adhere to treatment before
providers initiate any form of treatment. (For more on adherence,
see Chapter 7: Adherence.)
How should
providers incorporate patient education into care?
Patient education
is so important that entire clinic visits are often devoted to a
discussion of key concepts. Providers should use easily understood
language and confirm the patient's understanding of medical terms
and concepts. During these discussions, it is helpful for providers
to be flexible, acknowledging that uncertainties exist regarding
optimal medical management of HIV disease.
Because patient
education is time-consuming, many HIV specialty clinics utilize
staff other than the primary care provider, such as nurses and nurse
practitioners who specialize in HIV clinical care, physician's assistants,
pharmacists, and trained peer educators. This interdisciplinary
team approach can supplement the limited time primary care providers
often have with patients.
What information
resources are available for patients?
Clinics can
provide patient education materials and make referrals to social
workers, nutritionists, pharmacists, and financial advisers who
serve as first-line sources of information about medical issues
and social services available in the community. At the regional
level, community-based HIV/AIDS organizations and county and State
public health departments offer information about medical care and
facilitate access to legal aid, financial assistance, low-income
housing, support groups, and other social services. At the national
level, many organizations provide comprehensive information about
HIV/AIDS. Table 2-1 lists recommended resources to which providers
can refer patients for information and support.
Table 2.1 Information
Resources for Patients, Telephone Numbers
AIDS
Clinical Trials Information Service |
Clinical
trials information |
1-800-874-2572 |
CDC
National AIDS Hotline |
General
AIDS information, local resources for HIV testing and services |
English
1-800-342-2437 (24/7)
Spanish 1-800-344-7432 (8 am - 2 am EST)
TTY 1-800-243-7889 |
Guides
for Living |
National
resource directory |
1-303-702-1254 |
Social
Security Benefits |
How
to apply for social security benefits |
1-800-772-1213 |
Project
Inform |
Treatment
information |
1-800-822-7422 |
AIDS
Treatment Information Service |
Treatment
information |
1-800-448-0440 |
Direct
Access Alternative Information Resources |
Alternative
Treatments |
1-888-951-5433
NYC: 1-212-725-6994 |
Risk
Assessment and Counseling
TOP
What risk-taking
behaviors should be reviewed with patients?
Patients infected
with HIV who practice unsafe sex or inject drugs can infect others,
be reinfected themselves with new HIV strains, or contract STDs,
viral hepatitis, or other infections. Abuse of alcohol or illicit
drugs is directly harmful and may affect adherence to a complicated
medical regimen. Accordingly, providers need a detailed understanding
of their patients' risk-taking behaviors to guide patient education
and counseling efforts and to assess the advisability of initiating
antiretroviral treatment.
Table 2-2 lists
specific risk-taking behaviors to review with patients. See also
Chapter 4: Prevention of HIV in the Clinical Care Setting and Chapter
13: Management of Substance Abuse.
Table
2-2. Risk-Taking Behaviors to Review with Patients Infected with
HIV
Sexual
Practices
Number
and gender of partners
Specific sexual practices
Frequency
Condom use
HIV status of partners and disclosure of patient's HIV
status
Anonymous partners
Association with drug use
Prior STDs
Genital ulcer disease
Drugs
Substances
used
Routes of administration
Tolerance and history of withdrawal
History of drug treatment
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How
should one ask about risk-taking behaviors?
Explaining
the rationale for reviewing risk-taking behaviors, informing patients
that such a review is routine, and asking for a patient's permission
to discuss these topics is a good way to initiate the conversation.
Projecting comfort with the subject material and proceeding in
a poised, professional, nonjudgmental, and supportive fashion
will engender trust and help patients feel safe enough to discuss
their behavior. With regard to sexual behavior, asking "Do
you have sex with men, women, or both?" indicates the provider's
openness to all sexual orientations. Making a comment that many
men who have sex with men, particularly in certain cultures, do
not self-identify as gay assures patients that discussing their
behavior will not cause the provider to categorize them without
their consent. Providers should also explore factors associated
with sexual abstinence.
At
the same time, it is important for providers to be realistic.
Wanting a satisfying sex life is a reasonable desire; the goal
is to minimize risk associated with sex. Similarly, changing addictive
behavior is extremely difficult and often requires several attempts.
Discussing realistic goals will enhance a provider's credibility
and minimize a patient's resistance to discussing these subjects.
The goal of this initial survey is to learn what patients are
doing, not to draw battle lines.
What
are effective counseling strategies to help patients decrease
their risk taking?
When
discussing risk-taking behaviors, a key first goal is to assess
a patient's state of preparedness for change. Some patients with
newly diagnosed HIV come to care motivated to make healthy lifestyle
changes. For these individuals, an enhanced understanding of the
risks associated with certain behaviors in conjunction with a
provider's strong recommendation to modify behavior may suffice.
Providers should also be prepared to offer appropriate medications
(e.g., to assist with smoking cessation) or referrals for drug
and alcohol abuse counseling. For patients with complicating factors
such as severe mental illness, substance abuse, domestic violence,
or sexual abuse, referral and close linkages with specialty care
are essential.
What
if a patient is not prepared to make lifestyle changes?
Providers
should deliver a clear, unequivocal message regarding the risks
to patients and others associated with unsafe sex and ongoing
drug use and advise patients of ways, such as safer sexual practices
and needle exchange programs, to reduce risk. It should be kept
in mind, however, that pushing patients unprepared for behavioral
change may lead to animosity and resistance and that direct advice
alone is unlikely to result in immediate or sustained behavioral
change. For example, advice to stop smoking generally results
in 12-month success rates of 5%-10%. For patients unprepared to
alter their risk-taking behavior, a longer-term strategy is required,
and a nonconfrontational approach such as motivational interviewing
is recommended (see Table 2-3).
Table
2-3. Motivational Interviewing
Basic
Steps:
- Seek
to understand the patient's experience through careful
and reflective listening.
- Help
the patient voice his or her own reasons
for change.
- Recognize
and accept resistance to change.
- Affirm
the patient's ability to control his or her
own actions.
In
this patient-centered approach, the provider seeks an accurate
understanding of the patient's unique experience with certain
behaviors. The interviewer listens carefully to the patient's
thoughts about his or her behavior, monitors readiness for
change, clarifies what the patient believes to be obstacles
to change, identifies the patient's own self-motivational
statements, and selectively reinforces these expressions
of desire, intent, and ability to change. In this manner,
the provider yields the role of "expert" and offers
affirmation and support for the patient's ability to control
his or her own behavior.
Principles
to Remember:
- For
most people, motivation for change must come from within.
Direct persuasion does not often result in sustained behavioral
change.
- It
is the patient's task to articulate resolve and ambivalence.
- When
patients voice resistance to change, it is preferable
to recognize and accept a lack of readiness than to press
for immediate change. Timing is important.
- Patients
must understand that resolutions to change often slip,
and failure should not become a reason to avoid contact
with the provider.
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When
working with a patient over time to support behavioral change,
it is crucial for the provider to be a consistent source of support,
hope, and optimism. By acknowledging positive efforts even when
initial attempts to modify behavior fail, by continuing to offer
encouragement, and by supporting even small progress, the provider
can help bolster a patient's resolve and sense of control over
his or her actions.
- Caring for
patients with HIV/AIDS requires a strong provider-patient relationship,
a multidisciplinary care team, and frequent office visits.
- Stigma and
discrimination must be addressed through strong confidentiality
protections, emotional support, and cultural sensitivity.
- Patient
education about the disease process, treatment, and community
resources is a vital component of care.
- The primary
care provider plays a key role in risk assessment and counseling
for all patients with HIV.
Suggested
Resources
TOP
Aranda-Naranjo
B, Davis R. Psychosocial and cultural considerations. In: A Guide
to the Clinical Care of Women with HIV/AIDS, 1st ed. Washington:
US Department of Health and Human Services, HRSA, HIV/AIDS Bureau;
2001.
Centers for
Disease Control and Prevention. Incorporating HIV prevention
into the medical care of persons living with HIV. MMWR Recommendations
and Reports, (July 18, 2003; 52(RR12);1-24.
Hecht FM, Wilson
IB, Wu AW, Cook RL, Turner BJ. Society of General Internal Medicine
AIDS Task Force. Optimizing care for persons with HIV infection.
Ann Intern Med. 1999;131:136-143.
Positive Living.
A practical guide for people with HIV. Seattle: Public Health-Seattle
& King County, HIV/AIDS Program; 1999.
Rollnick S,
Miller WR. What is motivational interviewing? Behavioral
and Cognitive Psychotherapy. 1995;23:325-334.
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