Lawrence S. Neinstein, M.D., F.A.C.P.
Professor of Pediatrics and Medicine
USC Keck School of Medicine
Executive Director
University Park Health Center
Associate Dean of Student Affairs
   

 

 

Confidentiality Issues (A5)

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The rights of minors and in particular adolescents can be confusing. Adolescents are individuals who have more mental capacity for decision making than younger children but are not yet full adults. There are many specific areas regarding consent and confidentiality that are particularly difficult for teens, parents, health care professionals and lawmakers. These usually surround areas of reproductive health, mental health and substance abuse. There are also significant differences between countries and individual states or provinces within countries regarding particular laws of adolescent rights to consent and confidentiality.

Over the last several decades the legal framework that applies to the delivery of adolescent health care has changed in several ways.

  • The United Nations has enacted the UN Convention on the Rights of the Child (http://www.unicef.org/crc/index_30160.html or see summary below)
  • Courts have recognized that minors, as well as adults, have constitutional rights.
  • All states in the U.S. have enacted statutes to authorize minors to give their own consent for health care in specific circumstances.
  • The financing of health care services for all age groups and income levels has undergone major change

In the United States , the rights of adolescents took a major step with Gault in 1967, in which the United States Supreme Court stated that "neither the Fourteenth Amendment nor the Due Process Clause is for adults alone." However, most specific legal provision that that affect adolescents' access to health care are contained in state and federal statutes or in “common law” decisions of the courts.

It becomes essential that health-care practitioners treating adolescents have a clear understanding of the legal framework within their particular country or state including checking:

In most states and countries, children under 18 have legal status that differs from that of adults. Several areas are of particular concern. These include:

CONSENT

Who is authorized to give consent for health care and whose consent is required?

In general, U.S. law requires the consent of a parent before medical care can be provided to a minor. However, there are numerous exceptions to this requirement. These may include:

  • Consent by someone other than a biologic parent - such as a foster parent, a juvenile court, a social worker, or probation officer
  • Emergency situations where care may be provided without prior consent to safeguard the life and health of the minor.
  • Specific legal provisions in particular states that allow minors to consent for specific areas of care. Some of these include
  • Contraceptive care
  • Pregnancy related care
  • Diagnosis and treatment for sexually transmitted diseases (STDs)
  • Diagnosis and treatment of either human immunodeficiency virus (HIV), or acquired immunodeficiency syndrome (AIDS).
  • Diagnosis and treatment of reportable or contagious diseases
  • Examination and treatment related to sexual assault
  • Counseling and treatment for drug or alcohol problems
  • Counseling and treatment for mental health issues.

In addition, many states have given consent rights to minors who have special status. These include:

  • emancipated minors
  • married minors
  • minors in the armed services
  • minors living apart from their parents
  • and in some states "mature minors"

Not all states have statutes covering all of these services. Some of these statutes contain age limits, which most frequently fall between ages 12 and age 15 years. A state by state analysis is available at: http://www.guttmacher.org/graphics/gr030406_f1.html As theses vary from country to country and state to state, clinicians are advised to check laws in their own area.

Informed consent describes the process during which the patient learns the risks and benefits of alternative approaches to management and authorizes a course of action proposed by the clinician. Informed consent has both ethical and legal derivations. Informed consent also implies that the individual has the mental capacity to given informed consent.

Assent: Under specific legal circumstances, adolescents may receive confidential care and may give informed consent for recommended care. If the legal circumstances do not allow a minor to consent for medical treatment, the minor¹s views and opinions can still be respected by obtaining assent. This respects the decision-making skills of a minor by allowing them to participate in the decision.

PRIVACY AND CONFIDENTIALITY

Aside from consent, there is also the issue of confidentiality of services. This includes who has the right to control the release of confidential information about the health care, including medical records, and who has the right to receive such information?

There are numerous reasons why it is important to maintain confidentiality in the delivery of health-care services to adolescents. These include:

  • The needs of clinical practice: Confidentiality is often needed to facilitate adolescents seeking necessary care and also in providing accurate, candid and complete health information.
  • Developmental Needs: Confidential discussions and disclosure help support the adolescents' growing sense of privacy and autonomy.
  • Safety Issues : There are also times that confidentiality/consent is important to protect teen from humiliation and discrimination that could result from disclosure of confidential information.

There are numerous country and local regulations that can affect this confidentiality. Because of the potential for many conflicting regulations, clinicians are advised to check on local regulations that apply to confidentiality with minors. It is important to check out:

  • What information is confidential (since it is confidential information that is protected against disclosure)?
  • What information is not confidential (since such information is not protected)?
  • What exceptions are there in the confidentiality requirements?
  • What information can be released with consent?
  • What other mechanisms allow for discretionary disclosure?
  • What mandates exist for reporting or disclosing confidential information?

Legal Limits of Confidentiality
It is important to balance the moral needs of protecting the rights of the adolescent with the legal and ethical obligations to breach this confidentiality in selected instances. There are circumstances in which it is neither possible nor appropriate to maintain the confidentiality of information for legal and other reasons. These include situations in which the adolescent poses a severe risk of harm to himself or herself or to others, and cases of suspected physical or sexual abuse for which there is a legal reporting requirement. There are also specific laws in some geographic areas that require parental notification in certain circumstances, even if the care is based on a teen's own consent. Finally, when confidentiality must be breached for ethical or legal reasons, the adolescent should be informed.

Medical Records
Confidentiality protections apply not only to verbal communications but also to written information contained in medical records. Patients, who are permitted to consent to their own health care, should be allowed to review their own medical records and to protect their medical records from review by others. It is far more difficult to protect the confidentiality of written medical records.

It is important to understand local regulations regarding the release of medical records of adolescents. One should understand that many or most hospitals and clinics will release minors medical written chart information to parents with parental consent without requiring the permission of the minor adolescent. This may break the confidentiality of information with an adolescent.

Although usually bound together in clinical encounters, confidentiality and consent are different. Confidentiality can occur during an encounter whether or not specific informed consent for a treatment or intervention is given. For example, pregnancy options may be confidentially discussed before informed consent is given for a pregnancy intervention.

PAYMENT

A last issue that arises with consent and confidentiality is occasionally that of payment of services. Who is financially liable for payment and is there a source of insurance coverage or public funding available that the adolescent can access. The fact that a minor has the right to consent and confidentiality of services does not necessarily guarantee payment, nor confidentiality of the information if insurance is used. In addition, some consent laws specify that if a minor is authorized to consent to care, it is the minor rather than the parent who is responsible for payment.

A source of payment is essential whether an adolescent needs care on a confidential basis or not. Adolescents are uninsured and underinsured at higher rates than other groups in the population and those adolescents living below the poverty level are at the greatest risk for lacking health insurance. This can present a significant barrier to care.

IMPORTANT DOCUMENTS REGARDING MINORS' RIGHTS

http://www.unicef.org/crc/index_30160.html
Overall the UN Convention:

  • Reinforces fundamental human dignity
  • Highlights and defends the family's role in children's lives
  • Seeks respect for children – but not at the expense of the human rights or responsibilities of others
  • Endorses the principle of non-discrimination .
  • Establishes clear obligations
  • If a decision is being made by any organisation about a child or youth, then their interests must be considered when making the final decision.

Article 4: Governments have made a commitment to live up to the Convention's standards

Article 5: Governments must value and support parents and other adults in their roles as carers. Parents and others have a responsibility to listen to children/youth and vice-versa.

Article 6: Children have the right to life and must have the best possible chance to develop fully

Article 7: Every child has the right to a name at birth and the right to become a citizen of a country.

Article 8: Governments must be committed to respect children's right's to preserve their nationality and identity

Article 9: Children can only be separated from parents if it is in their own best interests and if that happens, then someone who is an interested party must be given the opportunity to take part in proceedings and have their views heard.

Article 10: States shall act quickly and in a positive and humane manner in applications by families for reunification.

Article 11: As they mature, children have the right to freedom of thought and religion.

Article 15: Children have a right to join organisations and to meet with each other. They can also take part in meetings and peaceful gatherings.

Article 16: Children have the right to their own privacy.

Article 17: Both parents have the main responsibilities for bringing up their children but governments are expected to recognise that some parents may need help to care properly for their children if they are both working.

Article 19: Children must be kept safe from violence and they must be kept safe from harm.

Article 20: If children cannot live with their family, they must be properly looked after in some other way, for example, by another family or in a children's home. The child's religion, race, culture and language must all be considered when a new home is being chosen for the child.

Article 21: Children being adopted must only be adopted under very strict rules which ensure that what is happening is in their best interests.

Article 22: States shall take appropriate measures to ensure that children who are seeking refugee status or who are refugees shall receive appropriate protection and humanitarian assistance.

Article 23: Governments shall recognise that a mentally or physically disable child should enjoy a full and decent life.

Article 24: Children have the right to be as healthy as possible. If they are ill, they must be given good health care to enable them to become well again. The Government must try to reduce the number of deaths in childhood and to make sure that women having babies are given good medical care.

Article 25: If a child is cared for by a local authority, the authority must review the children's situation regularly.

Article 26: Governments should recognise that children have the right to benefit from social security type of benefits.

Article 27: Every child has the right to expect an adequate standard of living. The Government shall help parents to achieve this for their children.

Article 28: Every child has the right to free education at primary school level. Different kinds of secondary school education should be available for children. For those with ability, higher education should also be provided .

Article 29: Schools should help children develop their skills and personality fully, teach them about their own and other people's rights and prepare them for adult life.

Article 30: Children have the right to access their own culture, use their own language and practice their own religion.

Article 31: Every child is entitled to rest and play and to have the chance to join in a wide range of activities.

Article 32: The Government shall protect children from doing work which could be dangerous or which could harm their health or interferes with their education.

Article 33: The Government shall take measures to protect children from dangerous drugs.

Article 34: The Government shall protect children from sexual abuse.

Article 35: The Government shall take measures to protect children from being abducted or sold.

Article 36: Children shall be protected from all sorts of exploitation which can damage their welfare

Article 37: No child shall be subject to torture or inhumane treatment or punishment.

Article 38: The Government should respect and ensure respect for rules of international humanitarian law applicable to children during armed conflicts. No child under 15 can be enlisted into an army.

Article 39: The Government shall promote physical and psychological recovery and social reintegration for victims of neglect, abuse or torture.

Article 40: Children who have committed a crime, or who are alleged to have committed a crime, should be shown respect for their human rights by those who are dealing with them. They should have access to appropriate help including legal assistance.

Article 41: If a country's own law better meets the rights of the child than the Convention does, then the terms of the Convention will not apply.

The Government must publicise the Convention to parents and young people throughout their country.

European Convention on Human Rights
http://www.hri.org/docs/ECHR50.html

Position Paper on Confidential Health Care: Society for Adolescent Medicine
Journal of Adolescent Health 1997;21:4008-415
http://www.adolescenthealth.org/AM/Template.cfm?Section=Position_Papers&Template=/CM/ContentDisplay.cfm&ContentID=2597

Highlights of position paper:

  • Health providers should inform adolescent patients and their parents, if available about the requirements of confidentiality, including a full explanation of what confidential care entails and the conditions under which confidentiality might be breached.
  • Health providers must remain flexible when delivering confidential care to adolescents. Blind adherence to absolute confidentiality, or absence of confidentiality (in deference to parental wishes), is neither desirable nor required by ethics or law.
  • Health providers should develop a disclosure plan for those adolescents who are deemed not to have capacity to give informed consent or for whom disclosure of information to responsible adults becomes necessary which involves adolescent wishes about the manner in which information is shared.
  • Confidentiality considerations regarding record keeping are necessary. Health providers must consider the manner in which written and electronic medical records might be available to parties in ways that verbal communication are not, and in ways that would be objectionable to adolescent patients.
  • Expanded efforts are needed to increase the education of health professionals regarding the laws and regulations in their jurisdiction relating to confidentiality and informed consent for adolescents. In addition, specific training is needed to increase providers' skills in effectively and appropriately incorporating confidentiality into clinical practice.

American Academy of Pediatrics Policy on Confidentiality in Adolescent Health Care (RRE9151)

Key points in this policy include:

  • Clinicians should make every reasonable effort to encourage the adolescent to involve parents
  • The adolescent will have an opportunity for examination and counselling apart from parents
  • Confidentiality will be preserved between the adolescent patient and the provider as between the parent/adult and the provider.
  • The adolescent must understand under what circumstances (e.g., life-threatening emergency), the provider will abrogate this confidentiality.

Confidentiality of Health Care: Canadian Paediatric Society - Adolescent Medicine Committee

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Case

16-year-old female comes into the clinic with her mother for evaluation of acne and headaches. When you are taking the history, she discloses that she has a boyfriend, she is sexually active and he occasionally uses condoms. Her last menstrual period was two months ago. She is concerned about being pregnant. She would like to get a pregnancy test. She also would like to get contraceptive pills if she is not pregnant. She asks that you do not tell her mother that she is sexually active or that she is getting a pregnancy test.

Questions

Can you do a pregnancy test without the mother's permission?

Can you do a pelvic examination without the mother's permission?

Answers

These questions get to the heart of consent and confidentiality issues with teens. Often the major concerns surround issues of reproductive health as in this teen. The exact rules on consent and confidentiality depend on your own country and state's regulations regarding consent and confidentiality among minors.

However, regardless, it would be very important to explore in this adolescent several issues first.

  • What are her reasons for not wanting to disclose and share this information with her parents? In some cases, after a discussion of the issues, teens are willing to share information with their parents.
  • What is the nature of her relationship with her boyfriend and is it consensual
  • Does she have any symptoms of a sexually transmitted disease?
  • If she is pregnant, has she thought about what she might do and who she might share that information with?
  • Regarding the pelvic examination: This would be included in the overall consent by parents for treatment if a general consent was signed. In addition, in areas where minors can consent for treatment of pregnancy, prevention of pregnancy or diagnosis of STDs, the minor could give their own consent. However, often the logistics of doing a pelvic examination with the mother in the waiting room can be difficult and may entail another visit.

Many countries and local states or provinces allow for confidential care of pregnancy in teens. This often includes both consent and the confidentiality of that information.

The teen states that she has difficult relationship with her parents. She is very concerned about what they would do if they found out about her sexual activity. After discussing this for a while, she is clear that she wants this information confidential. You are practicing in an area that allows for consent and confidentiality of this health care and you reassure her about the confidentiality of this information and limitations on confidentiality. She declines a pelvic examination at this time and would like to come back in a couple of weeks. You complete your history and physical examination. You also perform a urine pregnancy test and the test is negative. You discuss oral contraceptive options with the adolescent. You also discuss management of her acne and headaches. You bring her mother in for a discussion of the patient's health care.

Question

Can you keep the information about the pregnancy test confidential and can you prescribe OCPs without parental involvement?

Answer

Again, this depends on local regulations. However, in many areas, minors have the right to contraceptive care or prevention of pregnancy without parental consent or involvement. Usually the right of confidentiality follows the right of consent but not always.

You finish with the adolescent, prescribe OCPs, have her come back in several weeks to see how she is doing and to perform a pelvic examination. The teen has private insurance and she is concerned that her parents might get a bill for her care.

Question:

Who is responsible for payment of her pelvic examination and testing?

Does the insurance company have to keep her information confidential?

Answer

The law is not always clear on responsibility of payment, but in many states this responsibility follows the person who gives consent. Thus, if the teen's parents have not given consent and have no information about this care, they may not be responsible for payment.

The question of confidentiality and the insurance company is very complicated. If the insurance is private and the parents are holders of the policy, it is probable that in most cases, if a test is ordered, a copy of the bill may go to the parents. In cases of care provided through public funding or HMO's this is not as likely. Thus, if the teen wants completely confidential care in this circumstance, there are several options:

  • Teen can go to a family planning or a free clinic where she might not have to pay for services.
  • Teen could pay for the services herself
  • Teen might qualify for special public funding for reproductive health services
  • Teen might reconsider involvement of her parents.

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Web Sites

National Center for Youth Law, a national non-profit law office serving the legal needs of children and their families.
http://www.youthlaw.org/

Alan Guttmacher institute: Summary of Minor's right to consent to health care and to make other important decisions
http://www.guttmacher.org/graphics/gr030406_f1.html (table format)
http://www.guttmacher.org/pubs/tgr/03/4/gr030404.pdf (pdf format)

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References

English A. Reproductive health services for adolescents. Critical legal issues. Obstetrics Gynecol Clin North Am. 2000;27:195.

English A, Morreale M, Hersh C, et al. State minor consent statutes: a summary, 2 nd ed. Chapel Hill, North Carolina: Center for Adolescent Health & the Law, In Press. (forthcoming May 2001)

Neinstein LS, Adolescent Health Care: A Practical Guide: Chapter 7: English A: Understanding Legal Aspects of Care, Lippincott Williams Wilkins, Philadelphia 2002.

 
Copyright (©) 2004-2013 Lawrence S. Neinstein, University of Southern California . All rights reserved. Republication or redistribution of the text, table, graphs and photos is expressly prohibited. The University of Southern California shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.