Transcript Document

Adolescent Case Involving
Confidentiality and
Disclosure
Diane M. Straub, MD, MPH
Associate Professor of Pediatrics,
Chief, Division of Adolescent
Medicine
University of South Florida
Faculty, Florida/Caribbean AETC
Disclosures of Financial Relationships
This speaker has no significant financial
relationships with commercial entities to
disclose.
This speaker will not discuss any off-label
use or investigational product during the
program.
This slide set has been peer-reviewed to ensure that there are no
conflicts of interest represented in the presentation.
Case
• J is a 15 yo girl who was diagnosed with HIV
four months ago at a routine health screening
by her excellent PCP (who actually does HIV
screening).
• She had reportedly “messed up” at a party a
few months prior, had some alcohol (her first,
so she didn’t know her limit) and had sex with
an older boy at the party.
• She doesn’t remember him wearing a condom.
She says the sex was consensual and was her
only sexual activity ever. She thinks she
passed out afterwards.
Case
• Her mother does not know she is sexually active,
as “she would kill me!” Despite persistent
attempts by the PCP to get her to discuss with her
mother, she adamantly continued to refuse.
• Her excellent PCP determined that she was not at
risk to herself and tried to “hook her up” with
support services (peer mediator, referral for
linkage to HIV care), but she has not followed up,
as she is afraid of disclosure to her mother.
• She “no-showed” for an intake appointment in HIV
specialty clinic.
Case
• She now presents with acute abdominal pain,
and is accompanied by her still unaware mother.
• Examination reveals a diagnosis of pelvic
inflammatory disease (PID) and possibly a
tuboovarian abscess (TOA), needing inpatient
admission for IV antibiotics.
• She still has not had evaluation for HIV status,
nor disclosure to mother.
• Upon further questioning, she admits to
continued, reportedly consensual, sexual activity
too.
Questions
• What do you tell J after she tells you she does not want her
mother to know why she is being admitted?
• What do you tell J’s mother when she asks you about the
reason for J’s admission?
• What are the laws that protect J’s confidentiality?
• Under what circumstances could you not keep J’s diagnoses
(PID vs HIV) confidential?
• What are the potential complications for keeping J’s diagnoses
(and its implications) confidential?
• How will you work up J’s HIV?
• What about J’s contraception and barrier protection use?
• What types of medical encounters require parental consent for
treatment?
Factors to consider
• Chronological age (particularly related to
legal factors)
• Cognitive and psychosocial development
• Other health-related behaviors
• Prior family communication/parental
influence
Support for confidentiality for minors:
• Policies of professional organizations that often
support the provision of confidential health care
to minors
– Helpful to use guidelines from American Academy of
Pediatrics (AAP), Society for Adolescent Health and
Medicine (SAHM), American Medical Association
(AMA), etc. to support policies for confidential care:
post in office, handouts for parents, etc.
• Minor consent laws
– Minor consent cards outlining rights of minors to
confidential healthcare in various states
• http://www.prch.org/resources-minors-access-cards
System-level issues that may break
confidentiality inadvertently:
• Billing practices (EOB – Explanation of
Benefits)
• Appointment reminders
• Scheduling system that requires reason for
visit
• Office and other staff not knowledgeable about
minors’ rights to confidential health care
• Results follow-up
• Cannot absolutely 100% guarantee
confidentiality a priori…
Cognitive Development: Piaget’s Formal
Operational Thought
EARLY
(11-13yo)
Concrete
thought
No future
perspective
MIDDLE
(14-16yo)
Abstraction
Has future
perspective;
not always
used
LATE
(17-21yo)
Established
abstract
thought
Future
oriented
Psychosocial Development: Erikson’s
Identity Formation
EARLY
MIDDLE
(11-13)
(14-16)
Preoccupied ٨ Perspective
with body
taking
changes
Body image
LATE
(17-21)
٧ Peer
pressure
٧ Impulsivity
“Invulnerable” ٨ Autonomy
• Other health related behaviors:
– Able to manage other health concerns?
• Relationship with parent/guardian
– Concerns about disclosure based on realistic
assessment of relationship?
– Alternative adult who can provide guidance?
Parental influence:
• Early adolescence: beginning to
separate from parents and identify with
peers
• Middle adolescence: peer influences
important, may override internal sense of
right/wrong; high parental conflict during
this time
• Late adolescence: developed own
personal values that govern choices,
may accept parental values or develop
own
Parental influence:
• Adolescents see parents as “experts” on
issues of morals, values, health-related
matters, and peers as “experts” on
matters of personal taste.
• Parents can impact effectiveness of peer
influence: teens who communicate with
parents about sexual matters are less
likely to be influenced by peers on their
sexual choices.
Parental influence:
• Authoritative parenting: characterized by
limit-setting responsive to adolescent
and his/her developmental level in the
context of a warm, supportive
relationship with good communication.
Questions
• What do you tell J after she tells you she does not want her
mother to know why she is being admitted?
• What do you tell J’s mother when she asks you about the
reason for J’s admission?
• What are the laws that protect J’s confidentiality?
• Under what circumstances could you not keep J’s
diagnoses (PID vs HIV) confidential?
• What are the potential complications for keeping J’s
diagnoses (and its implications) confidential?
• How will you work up J’s HIV?
• What about J’s contraception and barrier protection use?
• What types of medical encounters require parental consent
for treatment?
Additional Resources/References
• Minor consent cards: http://www.prch.org/resourcesminors-access-cards
• Center for Adolescent Health and the Law – contains
comprehensive list of relevant publications, as well as
other resources: http://www.cahl.org/
• State Minor Consent Laws: A Summary, Second
Edition. English A, Kenney KE. Chapel Hill, NC:
Center for Adolescent Health & the Law, 2003.
(Summarizes the minor consent laws for all 50 states
and D.C.).
Additional supportive
information/resources
Ethical principles
• Autonomy – ensure patient’s own wishes,
ideas, and choices are respected and
supported
• Beneficence – provider’s responsibility to
take action to further patient’s welfare
• Nonmaleficence – minimize harm
• Justice – fair and reasonable opportunity for
access to health care similar to other
groups in society
Behavioral Theory
Azjen, Rosenstock, Bandura
Intentions not always good predictors of behavior!
• Perceived vulnerability, subjective norms
– Is she in denial? Does she even think she CAN get infected?
– She knows people with HIV and they seem healthy, it’s no big deal…
• Perceived effectiveness, ease, and desirability of
health practice
– Does she think the medicines actually work? Can she get to clinic
herself?
• Sense of self-efficacy that one can undertake the
health practice/perceived behavioral control
– Does she think she can manage her infection on her own?
Laws on minor consent
• Legal basis for minors to consent to own
care
– Helps protect confidentiality
– Some version in every state
– Assume that
• Certain minors have attained the level of
maturity or autonomy necessary to make
decisions about own health care
• Adolescents unlikely to receive some important
types of health care unless they can do so
independently from their parents
Factors to consider: legal issues
• Laws that
– define emancipation,
– determine when a minor can consent to health care,
– specify when parental consent or notification is
required/permitted,
– clarify discretion of health care professionals to disclose
information,
– provide guidance on access to health care information
and medical records
• Implications of HIPAA Privacy Rule for provision of
adolescent health services
• Limits of confidentiality
Authorization based on…
• Minor status:
– Emancipated, married, pregnant, parent, military, high
school graduate
– Living apart from parents, living independently
– Attained certain age
– Qualified as a “mature minor”
• Type of care needed:
– Contraceptive services
– Pregnancy related care
– Diagnosis and treatment of STIs/HIV
– Treatment for drug or alcohol problems
– Care for sexual assault
– Mental health services
HIPAA Privacy Rule
• Individuals’ right to access protected health
information and control disclosure of that information
• In general, if minor can legally consent/does not
require parental consent, parent does not necessarily
have the right to access minor’s health information –
determined by “state or other applicable law”
– Gives legal significance to informal agreement of
confidentiality between adolescent and provider to which
parent has given assent
– Minors who have such agreements can request specific
privacy protections
Legal limits of Confidentiality
•
•
•
•
State laws
Homicidal or suicidal ideations
Child abuse reporting laws
Reporting requirements for communicable
diseases
Cannot absolutely 100% always guarantee
confidentiality a priori…
Data support positive influence of
following parental behaviors:
• Monitoring:
–
–
–
–
Requires good communication
Communicates parental values and expectations
Requires good communication
Effects on later initiation of sex; fewer risky partners; increased
contraceptive use; less frequent intercourse, STIs, and
pregnancy
• Communication:
– Effects on later sexual initiation, fewer partners, better use of
contraception
– Adolescent perceptions of problem communication associated
with increased sexual risk behaviors
• Modeling:
– Risky parental behaviors associated with risky adolescent
behaviors
Payment issues
• Health insurance coverage: law requires
EOB (Explanation of Benefits)
– EOBs sent to policy holder/insured
– EOBs can be vaguely worded so as not to
disclose confidential information
– Medicaid does not send EOBs for
confidential services in some states
Practical issues to consider:
• Candid and complete information generally
only if provider speaks with patient alone
• Clarify confidentiality (protections and
limitations) ahead of time with both
parent(s)/guardian and patient
• Skills to encourage patient communication
with parent(s)/guardian
• Acknowledge that parental support/
communication may not be possible
Practitioner’s Role:
Respect adolescent’s evolving autonomy – set rules
for confidentiality:
• Set expectations ahead of time (pre-teen, first visit
to teen clinic), review reasons why confidentiality
important, legal statutes and practice guidelines
from professional organizations
• Encourage parental participation in care and
support of confidentiality
– Help resolve conflicts, if any
– Forced communication may be counter-productive
Practitioner’s Role:
• Establish limitations of confidentiality with
adolescent and parent a priori
– Legal limitations
– Possibility of inadvertent breach of confidentiality
• Determine competence of minor to consent:
– Sufficient autonomy and intellect to consent to or refuse
care
– Consider age and developmental maturity
– Consider gravity of illness/risks of therapy vs.
non-therapy
– Feasibility (increased incentive for youth to discuss
with parent(s)/guardian)
Practitioner’s Role:
Anticipate system-level obstacles:
• Ensure office and all staff aware of minors’
rights to confidential care, ensure practices
that support these rights
– Billing, scheduling, office staff, follow-up
• Review and try to minimize paper trail issues
in your health system
• Be aware of alternative community resources
– School-based/college health services
– Planned Parenthood/public clinics
Follow-up issues:
• Always get alternative phone numbers,
establish system for f/u a priori (eg, will
leave only message to call back, will not
call with negative/normal results, etc).
• Texting/email/etc (possible breach of
confidentiality)