Confidential health care for adolescents: position paper of the Society for Adolescent Medicine

Abstract

On the basis of standards of clinical practice, research findings, principles of ethics, and law, the Society for Adolescent Medicine supports the following positions with respect to confidentiality in the delivery of health services to adolescents. •Confidentiality protection is an essential component of health care for adolescents because it is consistent with their development of maturity and autonomy and without it, some adolescents will forgo care.•Confidential health care should be available, especially to encourage adolescents to seek health care for sensitive concerns and to ensure that they provide complete and candid information to their health care providers.•Health care professionals should educate adolescent patients and their families about the meaning and importance of confidentiality, the scope of confidentiality protection, and the limits to confidentiality.•Health care professionals should support effective communication between adolescents and their parents or other caretakers. Participation of parents in the health care of their adolescents should usually be encouraged, but should not be mandated.•Health care professionals and delivery systems should review and, if necessary, revise their procedures (including scheduling, billing, and recordkeeping) to ensure that adolescents' privacy and the confidentiality of their health information are protected to the extent possible.•Health care professionals should receive education and ongoing training to ensure that they know and understand the state and federal consent and confidentiality laws relevant to the delivery of health services to adolescents and have the skills to apply these laws when delivering clinical care.•Laws that allow minors to give their own consent for all or some types of health care and that protect the confidentiality of adolescents' health care information are fundamentally necessary to allow health care professionals to provide appropriate health care to adolescents and should be maintained.•Research related to confidentiality and adolescent health care should be placed within a broad research agenda focused on finding ways to increase the numbers of adolescents who receive high quality health care for the wide range of health issues important in this age group. Future research should investigate the impact of providing or limiting confidential adolescent health services on specific health outcomes, inform strategies to address system-level barriers to provision of confidential adolescent services, and define ways that health care professionals can encourage parent-teen communication without losing the trust of adolescent patients.IntroductionConfidentiality protection for adolescents' health care information is important both to adolescents and to the health care professionals who care for them. A well-established tradition has developed in the United States of making confidential care available to adolescents, particularly for sensitive concerns such as sexuality, sexually transmitted infections (STIs), substance abuse, and mental health. This tradition has been carried on by a wide variety of health care professionals in diverse settings. It is well grounded in ethics, clinical practice, and research. In addition, legal protections for confidential care have been embodied in federal and state laws [1English A. Morreale M. A legal and policy framework for adolescent health care Past, present, and future.Houst J Health Law Policy. 2001; 1: 63-108Google Scholar].The Society for Adolescent Medicine has long recognized the importance of confidential health care for adolescents [2Hofmann A.D. Toward a rational policy for consent and confidentiality.J Adolesc Health Care. 1980; 1: 9-17Abstract Full Text PDF PubMed Scopus (44) Google Scholar]. Numerous position papers of the Society have affirmed support for confidentiality in specific contexts [3Society for Adolescent MedicineConfidential health care for adolescents Position paper.J Adolesc Health. 1997; 21: 408-415Abstract Full Text PDF PubMed Scopus (77) Google Scholar, 4Society for Adolescent MedicineAccess to health care for adolescents Position paper.J Adolesc Health. 1992; 13: 162-170Abstract Full Text PDF PubMed Scopus (105) Google Scholar, 5Society for Adolescent MedicineClinical preventive services for adolescents Position paper.J Adolesc Health. 1997; 21: 203-214Abstract Full Text PDF PubMed Scopus (71) Google Scholar, 6Society for Adolescent MedicineHIV infection and AIDS in adolescents Position paper.J Adolesc Health. 1994; 15: 427-434Abstract Full Text PDF PubMed Scopus (21) Google Scholar, 7Society for Adolescent MedicineReproductive health and adolescents Position paper.J Adolesc Health. 1991; 12: 649-661PubMed Google Scholar, 8Society for Adolescent MedicineHomeless and runaway youth and health issues Position paper.J Adolesc Health. 1992; 13: 717-726Abstract Full Text PDF PubMed Scopus (161) Google Scholar, 9Society for Adolescent MedicineTransition from child-centered to adult health care Position paper.J Adolesc Health. 1993; 14: 570-576Abstract Full Text PDF PubMed Scopus (981) Google Scholar]. In 1997, the Society published a comprehensive statement on the importance of confidentiality in adolescent health care [3Society for Adolescent MedicineConfidential health care for adolescents Position paper.J Adolesc Health. 1997; 21: 408-415Abstract Full Text PDF PubMed Scopus (77) Google Scholar].Since the position paper on confidentiality was released in 1997, several developments have occurred that make it important and timely for the Society to issue a revised confidentiality document. New research has underscored the importance of confidential care for many adolescents. The increasing computerization of medical records and information has increased the challenges to and opportunities for protecting adolescent patients' privacy. New federal medical privacy regulations, issued under the Health Insurance Portability and Accountability Act (HIPAA), and known as the “HIPAA Privacy Rule,” will have a major impact on the delivery of health services to both minors and adults.With this revised position paper, the Society for Adolescent Medicine reaffirms the importance of confidentiality in adolescent health care and explains the support for confidentiality that is found in clinical practice, research, ethics, and law.Clinical practiceThe overall goal in clinical practice is to deliver appropriate high-quality health care to adolescent patients, while encouraging communication between adolescents and their parents or other trusted adults without betraying the adolescent's trust in the health care professional. When deciding how best to provide confidential health care to adolescents in specific clinical situations, health care providers need to take into account the following factors: •The patient's chronological age, cognitive and psychosocial development, other health-related behaviors, and prior family communication.•Policies of professional organizations that often support the provision of confidential health care to minors who request privacy for a broad range of health services, including treatment of STIs, contraceptive care, outpatient mental health services and outpatient substance abuse services [10Gans J. Policy Compendium on Confidential Health Services for Adolescents. American Medical Association, Chicago1993Google Scholar, 11Morreale MC, Dowling EC, (eds). Policy Compendium on Confidential Health Services for Adolescents, 2nd edition. Chapel Hill, NC: Center for Adolescent Health & the Law. In press.Google Scholar].•Laws that define emancipation, determine when a minor can consent to health care (e.g., state minor consent statutes), specify when parental consent or notification is required or permitted (e.g., often for abortion services), clarify the discretion of health care professionals to disclose information, and provide guidance on access to health care information and medical records [12English A. Kenney K.E. State Minor Consent Laws. Center for Adolescent Health & the Law, Chapel Hill, NC2003Google Scholar].•The implications of the HIPAA Privacy Rule for the provision of adolescent health services [13English A. Ford C.A. The HIPAA privacy rule and adolescents Legal conundrums and clinical challenges.Perspect Sex Reprod Health. 2004; 36: 80-86Crossref PubMed Scopus (73) Google Scholar].•The limits of confidentiality (such as in situations of suspected physical or sexual abuse, suspected risk of suicide or homicide, and when public health laws require reporting certain diseases, e.g., Chlamydia, gonorrhea, TB, HIV), and strategies to involve the adolescent in appropriate plans for engaging parents or other trusted adults to assist with management of these situations.Health care professionals must also consider a variety of practical issues. First, experienced clinicians recognize that candid and complete information can be gathered only by speaking with the adolescent patient alone, and by clarifying with whom the information will be shared. Beginning in early adolescence, routinely spending at least part of each visit alone with each patient conveys to the young patients and their parents that this is a standard part of adolescent health care. This also provides regular opportunities to develop a confidential relationship with adolescent patients and to discuss sensitive health topics in an open manner, and it can reassure parents that the health care professional is available to help address topics that they may have a difficult time discussing. Experiences of seasoned clinicians suggest that most parents, who are often very trusting of physicians with whom they have an established relationship, support this arrangement.Second, routine discussions with adolescents and their parents about both the protections and the limitations of confidentiality are important. This conveys that a clinician is aware and respectful of privacy issues, educates adolescent patients and their parents about the guidelines for this aspect of care, and has beneficial effects on the patient-clinician relationship. It encourages open patient-clinician communication [14Schuster M. Bell R. Communication between adolescents and physicians about sexual behavior and risk prevention.Arch Pediatr Adolesc Med. 1996; 150: 906-913Crossref PubMed Scopus (98) Google Scholar, 15Nowell D. Spruill J. If it's not absolutely confidential, will information be disclosed?.Prof Psychol Res Pr. 1993; 24: 367-369Crossref Scopus (26) Google Scholar, 16Ford C. Millstein S. Halpern-Felsher B. Irwin C. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care.JAMA. 1997; 278: 1029-1034Crossref PubMed Google Scholar], which is essential for effective screening, accurate diagnosis, and risk-reduction counseling. This also increases the chance that adolescents will seek future health care for sensitive health concerns [16Ford C. Millstein S. Halpern-Felsher B. Irwin C. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care.JAMA. 1997; 278: 1029-1034Crossref PubMed Google Scholar]. It is important to recognize that adolescent patients are attentive to the specific content of messages [16Ford C. Millstein S. Halpern-Felsher B. Irwin C. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care.JAMA. 1997; 278: 1029-1034Crossref PubMed Google Scholar, 17Ford C.A. Thomsen S.L. Compton B. Adolescents' interpretations of conditional confidentiality assurances.J Adolesc Health. 2001; 29: 156-159Abstract Full Text Full Text PDF PubMed Scopus (47) Google Scholar]. Clinicians should be as clear as possible about what can and cannot be managed privately and convey messages that adolescents both understand and can trust.Third, clinicians need to be aware of system-level issues that may inadvertently break confidentiality and betray an adolescents' trust. Common problems are related to billing and reimbursement procedures, scheduling notification, and privacy of medical records [18Litt I.F. Adolescent patient confidentiality Whom are we kidding?.J Adolesc Health. 2001; 29: 79Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar, 19Ford C, Mitchell R: Discussing confidentiality with adolescent patients: Strategies used by clinician members of the Society for Adolescent Medicine (abstract). J Adolesc Health 2000;26:129.Google Scholar, 20Rainey D. Brandon D. Krowchuk D. Confidential billing accounts for adolescents in private practice.J Adolesc Health. 2000; 26: 389-391Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar]. Strategies to provide appropriate confidential care within this context need to be developed where feasible [20Rainey D. Brandon D. Krowchuk D. Confidential billing accounts for adolescents in private practice.J Adolesc Health. 2000; 26: 389-391Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar]. Alternatively, clinicians must be knowledgeable and prepared to refer patients who need confidential services to other sites where privacy can be assured. Attention to this issue at the level of health care systems, and within the context of wide-spread use of electronic medical records, is clearly needed.Fourth, clinicians need to learn the skills to provide appropriate confidential adolescent health care while also encouraging communication with parents. This may involve strategies such as discussing with adolescent patients their perceptions of the pros and cons of communication with parents, helping adolescents to see the potential advantages of increased communication with parents, and offering to facilitate communication with parents in a way that is helpful to the adolescent patient. Giving consistent messages to parents that health care professionals expect parents to discuss a wide range of issues related to health with their adolescent children may be helpful, and parent questionnaires may be an efficient way to regularly reinforce this message [21Elster A.B. Comparison of recommendations for adolescent clinical preventive services developed by national organizations.Arch Pediatr Adolesc Med. 1998; 152: 193-198Crossref PubMed Scopus (50) Google Scholar, 22Levenberg P. Elster A. Guidelines for Adolescent Preventive Services (GAPS). American Medical Association, Chicago, IL1995Google Scholar]. At the end of an adolescent visit, when “wrapping up” with the adolescent patient and the parent, it may be very useful to provide general anticipatory guidance counseling that, in fact, is tailored to needs identified during private discussion with an adolescent patient.Finally, it is important to acknowledge that some adolescents do not have parents, parental support, or any meaningful connection with parents. Some adolescents have experienced abuse or neglect by parents, and have legitimate fears about future parental abuse, which may include being asked to leave one's home by parents [23Sedlak A.J. Broadhurst D.D. Third National Incidence Study of Child Abuse and Neglect (NIS-3). U.S. Department of Health and Human Services, Atlanta, GA1996Google Scholar]. When clinicians encourage adolescents to communicate openly with their parents, it is important to ask about reasons for any reluctance to do so. There are times when it may be appropriate to identify and engage other trusted adults into management plans.ResearchOver the past decade, research has confirmed that concerns about privacy can prevent many adolescents from seeking health care [16Ford C. Millstein S. Halpern-Felsher B. Irwin C. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care.JAMA. 1997; 278: 1029-1034Crossref PubMed Google Scholar, 24Cheng T. Savageau J. Sattler A. DeWitt T. Confidentiality in health care A survey of knowledge, perceptions, and attitudes among high school students.JAMA. 1993; 269: 1404-1407Crossref PubMed Scopus (276) Google Scholar, 25Ginsburg K. Slap G. Cnaan A. et al.Adolescents' perceptions of factors affecting their decisions to seek health care.JAMA. 1995; 273: 1913-1918Crossref PubMed Scopus (173) Google Scholar, 26Klein J. Wilson K. McNulty M. et al.Access to medical care for adolescents Results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.J Adolesc Health. 1999; 25: 120-130Abstract Full Text Full Text PDF PubMed Scopus (205) Google Scholar, 27Ford C.A. Bearman P.S. Moody J. Foregone health care among adolescents.JAMA. 1999; 282: 2227-2234Crossref PubMed Scopus (270) Google Scholar, 28Reddy D.M. Fleming R. Swain C. Effect of mandatory parental notification on adolescent girls' use of sexual health care services.JAMA. 2002; 288: 710-714Crossref PubMed Scopus (230) Google Scholar]. In two large national surveys, approximately one-quarter of middle and high school students reported that they did not seek health care they needed [26Klein J. Wilson K. McNulty M. et al.Access to medical care for adolescents Results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.J Adolesc Health. 1999; 25: 120-130Abstract Full Text Full Text PDF PubMed Scopus (205) Google Scholar, 27Ford C.A. Bearman P.S. Moody J. Foregone health care among adolescents.JAMA. 1999; 282: 2227-2234Crossref PubMed Scopus (270) Google Scholar]. One of these studies found that 35% of students who did not seek care reported one reason was “not wanting to tell their parents” [26Klein J. Wilson K. McNulty M. et al.Access to medical care for adolescents Results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls.J Adolesc Health. 1999; 25: 120-130Abstract Full Text Full Text PDF PubMed Scopus (205) Google Scholar]. The impact of privacy concerns on care-seeking for specific sensitive health services is likely much higher. Essentially one-half of single, sexually active girls under 18 years of age recently surveyed in family planning clinics in one state reported that they would stop using the clinics under conditions of mandatory parental notification for prescription contraceptives. An additional 12% reported that they would delay or discontinue use of specific services such as services for STIs [28Reddy D.M. Fleming R. Swain C. Effect of mandatory parental notification on adolescent girls' use of sexual health care services.JAMA. 2002; 288: 710-714Crossref PubMed Scopus (230) Google Scholar]. Subsample analyses provided an indication of the potential magnitude of negative outcomes associated with decisions to forgo care: only 1% of adolescent girls who indicated they would stop using family planning services indicated that they would also stop having sexual intercourse, instead, they would continue to have sex, but use less effective or no contraceptive methods [28Reddy D.M. Fleming R. Swain C. Effect of mandatory parental notification on adolescent girls' use of sexual health care services.JAMA. 2002; 288: 710-714Crossref PubMed Scopus (230) Google Scholar]. Recent research has also confirmed that privacy concerns influence where many adolescents go for health care, and that often this is not to see their regular health care provider [24Cheng T. Savageau J. Sattler A. DeWitt T. Confidentiality in health care A survey of knowledge, perceptions, and attitudes among high school students.JAMA. 1993; 269: 1404-1407Crossref PubMed Scopus (276) Google Scholar, 29Lane M. McBright J. Garrett K. et al.Features of sexually transmitted disease services important to African American adolescents.Arch Pediatr Adolesc Med. 1999; 153: 829-833Crossref PubMed Scopus (25) Google Scholar, 30Sugerman S. Halfon N. Fink A. et al.Family planning clinic clients Their usual health care providers, insurance status, and implications for managed care.J Adolesc Health. 2000; 27: 25-33Abstract Full Text Full Text PDF PubMed Scopus (30) Google Scholar, 31Klein J. McNulty M. Flatau C. Teenagers' self-reported use of services and perceived access to confidential care.Arch Pediatr Adolesc Med. 1998; 152: 676-682Crossref PubMed Google Scholar].When adolescents do seek health care, privacy concerns likely affect the quality of health care received. A substantial proportion of primary care physicians do not provide confidential adolescent health services [32Akinbami L.J. Gandhi H. Cheng T.L. Availability of adolescent health services and confidentiality in primary care practices.Pediatrics. 2003; 111: 394-401Crossref PubMed Scopus (78) Google Scholar], discuss confidentiality with patients [33Ford C.A. Millstein S.G. Delivery of confidentiality assurance to adolescents by primary care physicians.Arch Pediatr Adolesc Med. 1997; 151: 505-509Crossref PubMed Scopus (37) Google Scholar], or train their office staff to give accurate information about confidential services available in their practice [32Akinbami L.J. Gandhi H. Cheng T.L. Availability of adolescent health services and confidentiality in primary care practices.Pediatrics. 2003; 111: 394-401Crossref PubMed Scopus (78) Google Scholar]. Adolescents who are concerned about privacy are less likely to communicate openly with health care providers particularly about issues related to substance use, mental health, and sexual behaviors [16Ford C. Millstein S. Halpern-Felsher B. Irwin C. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care.JAMA. 1997; 278: 1029-1034Crossref PubMed Google Scholar, 34Thrall J. McCloskey L. Ettner S. et al.Confidentiality and adolescents' use of providers for health information and for pelvic exams.Arch Pediatr Adolesc Med. 2000; 154: 885-892Crossref PubMed Scopus (110) Google Scholar], which influences information exchange about key health issues for this age group [21Elster A.B. Comparison of recommendations for adolescent clinical preventive services developed by national organizations.Arch Pediatr Adolesc Med. 1998; 152: 193-198Crossref PubMed Scopus (50) Google Scholar]. Privacy concerns also influence adolescents willingness to receive services such as pelvic examinations and testing for STIs or HIV [34Thrall J. McCloskey L. Ettner S. et al.Confidentiality and adolescents' use of providers for health information and for pelvic exams.Arch Pediatr Adolesc Med. 2000; 154: 885-892Crossref PubMed Scopus (110) Google Scholar, 35Ford C. Best D. Miller W. Confidentiality and adolescents' willingness to consent to STD testing.Arch Pediatr Adolesc Med. 2001; 155: 1072-1073Crossref PubMed Scopus (4) Google Scholar, 36Meehan T.M. Hansen H. Klein W.C. The impact of parental consent on the HIV testing of minors.Am J Public Health. 1997; 97: 1338-1341Crossref Scopus (23) Google Scholar, 37Jackson S. Hafemeister T.L. Impact of parental consent and notification policies on the decisions of adolescents to be tested for HIV.J Adolesc Health. 2001; 29: 81-93Abstract Full Text Full Text PDF PubMed Scopus (27) Google Scholar], which should be a part of routine care for many youth.Research is beginning to document the difficulty many health care professionals face when trying to provide confidential services to adolescent patients. For example, the majority of clinician members of the Society for Adolescent Medicine note barriers to providing confidential testing for chlamydial infection in their main clinic settings, primarily related to system-level issues such as billing and reimbursement [19Ford C, Mitchell R: Discussing confidentiality with adolescent patients: Strategies used by clinician members of the Society for Adolescent Medicine (abstract). J Adolesc Health 2000;26:129.Google Scholar].Future research related to confidentiality and adolescent health care should be placed within a broad research agenda focused on finding ways to increase the numbers of adolescents who receive high quality health care for the wide range of health issues important in this age group. This should include investigating the impact of providing or limiting confidential adolescent health services on specific health outcomes, and informing strategies to address system-level barriers to provision of confidential adolescent services.Finally, it is important to note that although research confirms the importance of confidentiality to many young people, concerns about confidentiality and disclosure of information regarding sensitive issues to parents is not universal. In the survey conducted in family planning clinics noted above [28Reddy D.M. Fleming R. Swain C. Effect of mandatory parental notification on adolescent girls' use of sexual health care services.JAMA. 2002; 288: 710-714Crossref PubMed Scopus (230) Google Scholar], approximately one-third of adolescents would continue to use family planning services under conditions of mandatory parental notification for prescription contraceptive use. Previous reviews of the literature have found that most pregnant minors willingly discuss abortions with their parents [38Academy of Pediatrics Committee Americanon AdolescenceThe adolescent's right to confidential care when considering abortion.Pediatrics. 1996; 97: 746-751PubMed Google Scholar]. Further research is needed to better understand variations in the importance of confidential health care among adolescents, and how health care professionals can facilitate improved communication between adolescents and their parents or other trusted adults in a way that benefits adolescent health and well-being [39Jaccard J. Dodge T. Dittus P. Parent-adolescent communication about sex and birth control A conceptual framework.in: Feldman S. Parent-Adolescent Communication. New Directions in Child and Adolescent Development. San Francisco, CA: Jossey-Bass, Rosenthal DA. Talking Sexuality2002: 9-41Google Scholar, 40Turrisi R. Jaccard J. Taki R. et al.Examination of the short-term efficacy of a parent intervention to reduce college student drinking tendencies.Psychol Addict Behav. 2001; 15: 366-372Crossref PubMed Scopus (179) Google Scholar].EthicsProtecting the confidentiality of adolescents' health information is a professional duty that derives from the moral tradition of physicians and the goals of medicine. The goals of medicine include curing disease, prolonging life, relieving suffering, and preventing illness. Basic moral principles can help guide health care professionals in their pursuit of these goals: respect for autonomy, beneficence, nonmaleficence and justice [41Beauchamp T.L. Childress J.F. Principles of Biomedical Ethics, 4th edition. Oxford University Press, New York, NY1994Google Scholar]. Each of these principles also has specific relevance to confidentiality protection in adolescent health care.Respect for autonomy means that patients' own wishes, ideas, and choices are to be supported during the process of helping them. When a relationship exists between a health care professional and a patient that protects the patient's privacy, the patient's autonomy is supported. Protection of confidentiality in a health care setting is derived from this principle. It represents an agreement between the patient and the health care professional that information discussed with and discovered about the patient during encounters between them will not be shared with other parties without the patient's permission.Nonmaleficence means that health care professionals avoid doing harm to the patient. In some circumstances, failing to respect an adolescent's privacy or to honor an express or implied agreement of confidentiality might cause harm. This might occur through disclosure of information to a parent or guardian, even though including parents in an adolescent's care might generally be helpful to the adolescent. Determining what may be harmful can be challenging because adolescents demonstrate different levels of maturity, engage in different behaviors, and have different family relationships. Avoiding harm, in conformity with the principle of nonmaleficence, must be viewed within the context of other moral principles such as autonomy and beneficence.Beneficence is the principle that requires action to further a patient's welfare; doing good for the patient. Protecting confidentiality often enables a health care professional to benefit a patient. Offering confidential care to adolescent patients encourages them to disclose their symptoms and life circumstances fully and completely, thereby increasing the likelihood that they will receive appropriate care and enhancing the clinician's capacity to help them.Justice requires health care professionals to give adolescents a fair and reasonable opportunity to receive appropriate health care on the same basis as other groups in society. To the extent that the lack of confidentiality protection impedes adolescents' access to health care they need, protection of confidentiality may be necessary to further the principle of justice.Individual adolescents vary in their levels of psychosocial maturity and economic independence, as well as in their behaviors and family situations. Therefore, it is inappropriate to apply a single moral prescription in all cases. The protection of confidentiality in adolescent health care should be grounded in the moral principle of respect for autonomy, but must recognize that in specific circumstances it may be permissible or even necessary to breach confidentiality to further other important moral principles, such as beneficence or nonmalificence.Both the disclosure of confidential information and the failure to disclose may constitute a clear moral breach in specific circumstances. A professional who fails to disclose confidential information, despite a likely benefit to the patient, merely because it would be inconvenient or difficult, puts his or her own needs above thos