Shared decision-making in adolescent healthcare: a literature review of ethical considerations.

PURPOSE: Adolescence is a period of growing independence and maturity, within the period of legal minority. As parents or guardians are socially and legally responsible for adolescents' medical decisions, shared decision-making in adolescent healthcare could be ethically challenging. This review aims to identify and map the ethical tensions in shared decision-making in adolescent healthcare. METHODS: We systematically searched the literature following the PRISMA guidelines to identify relevant articles, which were analyzed using the review of reasons methodology Strech and Sofaer (J Med Ethics 38(2):121-6, 2012). RESULTS: We included 38 articles which involved adolescents, healthcare professionals and parents as being the main stakeholders. Shared decision-making was influenced not only by individual stakeholders' characteristics, but by tensions between stakeholder dyads. Most studies supported the involvement of the adolescent in decision-making, depending on their life experience, decision-making capacity and clinical condition. CONCLUSIONS: Shared decision-making in adolescent health is receiving increasing attention. However, questions remain on what this concept entails, the roles and involvement of stakeholders and its practical implementation. WHAT IS KNOWN: • Although adolescents wish to be involved in health decisions, shared decision-making in adolescents is underexplored • Adolescent shared decision-making is different from pediatric and adult shared decision-making, and is ethically complex due to the adolescent's growing autonomy What is new: • Adolescent SDM involves three-way interactions between the adolescent, healthcare professional and parents • In adolescent shared decision-making, involving or excluding a stakeholder and sharing or withholding information are ethically value-laden steps • Research is needed to further understand the roles of adolescents' personal value systems, extended or reconstituted families and decision aids in shared decision-making.

Statement on gender-affirmative approach to care from the pediatric endocrine society special interest group on transgender health.

PURPOSE OF REVIEW: The purpose of this Position Statement is to emphasize the importance of an affirmative approach to the health care of transgender individuals, as well as to improve the understanding of the rights of transgender youth. RECENT FINDINGS: Transgender youth have optimal outcomes when affirmed in their gender identity, through support by their families and their environment, as well as appropriate mental health and medical care. SUMMARY: The Pediatric Endocrine Society Special Interest Group on Transgender Health joins other academic societies involved in the care of children and adolescents in supporting policies that promote a safe and accepting environment for gender nonconforming/transgender youth, as well as adequate mental health and medical care. This document provides a summary of relevant definitions, information and current literature on which the medical management and affirmative approach to care of transgender youth are based.

Justifications for coercive care in child and adolescent psychiatry, a content analysis of medical documentation in Sweden.

BACKGROUND: There has been considerable interest in normative ethics regarding how and when coercive care can be justified. However, only a few empirical studies consider how professionals reason about ethical aspects when assessing the need for coercive care for adults, and even less concerning children and adolescents. The aim of this study was to examine and describe how professionals document their value arguments when considering the need for coercive psychiatric care of young people. METHODS: All 16 clinics that admitted children or adolescents to coercive care during one year in Sweden were included in the study. These clinics had a total of 155 admissions of 142 patients over one year. Qualitative content analysis with a deductive approach was used to find different forms of justification for coercive care that was documented in the medical records, including Care Certificates. RESULTS: The analysis of medical records revealed two main arguments used to justify coercive care in child and adolescent psychiatry: 1) the protection argument - the patients needed protection, mainly from themselves, and 2) the treatment requirement argument - coercive care was a necessary measure for administering treatment to the patient. Other arguments, namely the caregiver support argument, the clarification argument and the solidarity argument, were used primarily to support the two main arguments. These supportive arguments were mostly used when describing the current situation, not in the explicit argumentation for coercive care. The need for treatment was often only implicitly clarified and the type of care the patient needed was not specified. Few value arguments were used in the decision for coercive care; instead physicians often used their authority to convince others that treatment was necessary. CONCLUSIONS: One clinical implication of the study is that decisions about the use of coercive care should have a much stronger emphasis on ethical aspects. There is a need for an ethical legitimacy founded upon explicit ethical reasoning and after communication with the patient and family, which should be documented together with the decision to use coercive care.

Conscientious objection to abortion and reproductive healthcare: a review of recent literature and implications for adolescents.

PURPOSE OF REVIEW: Conscientious objection to reproductive healthcare (refusal to perform abortion, assisted reproductive technologies, prenatal diagnosis, contraception, including emergency contraception and sterilization, etc.) has become a widespread global phenomenon and constitutes a barrier to these services for many women. Adolescents are a particularly vulnerable group because some providers object to specific aspects of their reproductive healthcare because of their status as minors. RECENT FINDINGS: Recent peer-reviewed publications concerning conscientious objection address provider attitudes to abortion and emergency contraception, ethical arguments against conscientious objection, calls for clarification of the current laws regarding conscientious objection, legal case commentaries, and descriptions of the country-specific impact of policies in Russia and Italy. SUMMARY: Conscientious objection is understudied, complicated, and appears to constitute a barrier to care, especially for certain subgroups, although the degree to which conscientious objection has compromised sexual and reproductive healthcare for adolescents is unknown. Physicians are well positioned to support individual conscience while honoring their obligations to patients and to medical evidence.

Confidentiality in the Care of Adolescents: Technical Report.

Confidentiality is a foundational element of high-quality, accessible, and equitable health care. Despite strong grounding in federal and state laws, professional guidelines, and ethical standards, health care professionals and adolescent patients face a range of complexities and barriers to seeking and providing confidential care to adolescents across different settings and circumstances. The dynamic needs of adolescents, the oftentimes competing interests of key stakeholders, the rapidly evolving technological context of care, and variable health care billing and claims requirements are all important considerations in understanding how to optimize care to focus on and meet the needs of the adolescent patient. The following assessment of the evolving evidence base offers a view of the current state and best practices while pointing to numerous unmet needs and opportunities for improvement in the care experiences of youth as well as their health outcomes.

Legal and ethical issues in adolescents' health care.

This review examines confidentiality, consent to health care and research involving adolescents in regard to legal and ethical aspects. Adolescents are more likely to seek health care if their provider assures confidentiality, but in providing confidential care a balance should be considered between the needs of the adolescent patient, parents, and provider. The vast majority of countries set the legal age at 18, but from the age of 14 years adolescents' capability for medical decision-making may be considered already similar to adult capacity. Instead of chronological age of consent, permission for consent must take into consideration the adolescent's capacity for understanding the medical treatment or the research in which the adolescent is requested to be involved. At all circumstances adolescent's assent for both medical treatment and research is always mandatory. Involving adolescents in research should be based on a careful assessment of risks and benefits together with understanding of the developing capabilities of the adolescent.

Balancing liberation and protection: a moderate approach to adolescent health care decision-making.

In this paper I examine the debate between 'protectionists' and 'liberationists' concerning the appropriate role of minors in decision-making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision-making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other hand, argue in favour of expanded participation by minors in treatment decisions, and decision-making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns.

Attitude of Lithuanian residents to confidentiality of adolescent sexual and reproductive health care.

OBJECTIVE: To assess the attitudes of Lithuanian residents towards the protection of confidentiality in the sexual and reproductive health care of adolescents. MATERIAL AND METHODS: A public opinion survey was performed in August 2005. A random sample, taking into account age, sex, education, employment, family status, place of residence of 1,054 Lithuanian residents aged 16-74 was interviewed in their households. The topics dealt with in the 23-item questionnaire concerned attitudes towards confidentiality in adolescents' sexual and reproductive health care as well as towards sexual and reproductive health promotion for them. RESULTS: More than half (58%) of the respondents believed that confidentiality is an important issue in case of sexual and reproductive health services that address adolescents. Although only 12% of Lithuanians were ready to agree with the legalization of the right to confidentiality in health care for those younger than 16, at least one-third of the respondents stated that physicians have to protect confidential counselling for 14-15-year-old adolescents on inter alia contraception, pregnancy and sexually transmitted infections. Forty-two percent of the respondents gave top priority to the legal initiative focused on improvement of confidentiality protection. Other promising strategies selected by Lithuanian residents included the development of policies concerning confidentiality protection for minor patients, assuring the privacy of consultations and protecting the medical record keeping system. CONCLUSIONS: The Lithuanian residents surveyed had a positive attitude towards confidential sexual and reproductive health care for adolescents. They stated that guarantees of confidentiality should depend on the reason for the consultation and the age of the patient. The most promising initiatives for the improved protection of confidentiality include strengthening legislation and improving organizational procedures in health care settings.

Ethics and adolescent care: an international perspective.

PURPOSE OF REVIEW: This update reviews the concepts underlying ethical issues in various contexts and countries, highlighting the evolution in the use of the core values underpinning the field and practice of bioethics as applied to healthcare. RECENT FINDINGS: It stresses the specific position of the adolescent as being a unique individual searching for autonomy and, most of the time, being competent to make decisions regarding the adolescent's own health. It briefly outlines the principles of a 'deliberative' approach in which the practitioner, while keeping in mind the legal context of the country where the practitioner is working, assesses to what extent the adolescent can be considered as competent, and then discusses with the adolescent the medical and psychosocial aspects of the various actions to be taken in a situation, as well as the basic ethical values linked with each of the various options available. The deliberation can involve relevant stakeholders, provided the issues concerning confidentiality have been fully discussed with the adolescent. SUMMARY: This process forces the practitioner, the adolescent patient and those who care for the adolescent patient to look outside their usual frameworks and make a decision that is in the best interest of the young person, and is informed by various ethical values.

Ethical considerations in transition.

The objective of this paper is to explore ethical issues in the provision of transitional care. Using five case studies a number of ethical issues in transition and transition care are discussed. These issues include: 1) preserving, promoting and ensuring dignity and respect for patients; 2) fostering and supporting the trusting relationships that young people and their parents have for pediatric providers to their new adult providers by using a graduated system of transfer; 3) recognizing graduated capacity; 4) promoting autonomy and self-management; 5) duties of beneficence and non-maleficence; 6) truthtelling; 7) duty to provide developmentally appropriate care; and 8) duty of pediatric providers to advocate for transitioning patients in the adult system. Attention to the ethical issues surrounding these complex cases has the potential to positively influence a successful transition to adult-oriented health care.

The Initial Reproductive Health Visit: ACOG Committee Opinion, Number 811.

The primary goal of the initial reproductive health visit is to provide preventive health care services, educational information, and guidance, in addition to problem-focused care. The initial reproductive health visit should take place between the ages of 13 and 15 years. The scope of the initial visit will depend on the patient's concerns, medical history, physical and emotional development, and the level of care the patient is receiving from other health care professionals. All adolescents should have the opportunity to discuss health issues with a health care professional one-on-one, because they may feel uncomfortable talking about these issues in the presence of a parent or guardian, sibling, or intimate partner. Addressing confidentiality concerns is imperative because adolescents in need of health care services are more likely to forego care if there are concerns about confidentiality. Laws regarding confidentiality of care to minors vary by state, and health care professionals should be knowledgeable about current laws for their practice. Taking care to establish secure lines of communication can build trust with the patient and guardian, support continuity of care, ensure adherence to legal statutes, and decrease barriers to services. Obstetrician-gynecologists have the opportunity to serve as educators of parents and guardians about reproductive health issues. Preparing the office environment to include adolescent-friendly and age-appropriate reading materials, intake forms, and educational visual aids can make the general office space more inclusive and accessible. Resources should be provided for both the adolescent patient and the parent or guardian, if possible, at the conclusion of the visit. This Committee Opinion has been updated to include gender neutral terminology throughout the document, counseling topics with direct links to helpful resources, screening tools with direct links, addition of gender and sexuality discussion, and inclusion of trauma-informed care.

The Initial Reproductive Health Visit: ACOG Committee Opinion Summary, Number 811.

The primary goal of the initial reproductive health visit is to provide preventive health care services, educational information, and guidance, in addition to problem-focused care. The initial reproductive health visit should take place between the ages of 13 and 15 years. The scope of the initial visit will depend on the patient's concerns, medical history, physical and emotional development, and the level of care the patient is receiving from other health care professionals. All adolescents should have the opportunity to discuss health issues with a health care professional one-on-one, because they may feel uncomfortable talking about these issues in the presence of a parent or guardian, sibling, or intimate partner. Addressing confidentiality concerns is imperative because adolescents in need of health care services are more likely to forego care if there are concerns about confidentiality. Laws regarding confidentiality of care to minors vary by state, and health care professionals should be knowledgeable about current laws for their practice. Taking care to establish secure lines of communication can build trust with the patient and guardian, support continuity of care, ensure adherence to legal statutes, and decrease barriers to services. Obstetrician-gynecologists have the opportunity to serve as educators of parents and guardians about reproductive health issues. Preparing the office environment to include adolescent-friendly and age-appropriate reading materials, intake forms, and educational visual aids can make the general office space more inclusive and accessible. Resources should be provided for both the adolescent patient and the parent or guardian, if possible, at the conclusion of the visit. This Committee Opinion has been updated to include gender neutral terminology throughout the document, counseling topics with direct links to helpful resources, screening tools with direct links, addition of gender and sexuality discussion, and inclusion of trauma-informed care.

Confidentiality, consent, and caring for the adolescent patient.

PURPOSE OF REVIEW: This study reviews the healthcare-related rationale for providing confidential care to adolescents, as well as the legal framework for the provision of such care. RECENT FINDINGS: Physician assurances of confidentiality increase adolescents' willingness to disclose sensitive health information, but these assurances are rarely given. Physicians may not be aware of legal minor consent guidelines or may be concerned about parental reaction to such confidential discussions. Fortunately, many parents and teens understand the importance of confidential healthcare. Adolescent consent and confidentiality laws vary from state to state, but there are federal guidelines and common law concepts that are applicable throughout the United States. The Health Insurance Portability and Accountability Act Privacy Rule also provides guidelines for confidential care to minors. Future challenges for adolescent confidentiality include ease of access to electronic medical records as well as patient (and/or parent)-controlled health records. SUMMARY: Confidentiality for adolescents has important implications for the quality provision of healthcare for this vulnerable population. Physicians and other healthcare providers must be aware of these health implications, as well as federal policies, common law, and their individual state's laws pertaining to this important topic.

Ethical issues arising in the provision of medical interventions for gender diverse children and adolescents.

The care of children and adolescents whose experience of the body is at odds with their gender feelings raises a number of questions that are as much ethical as medical or psychological. In this article I highlight some areas of ethical concern from the point of view of a senior clinician at the nationally commissioned UK Gender Identity Development Service (GIDS). I make the assumption that ethical deliberation is relational and grounded in the natural, social, political and institutional worlds in which the ethical questions arise. I try to show how matters of empirical fact, alongside an appreciation of broad social contexts, and historic and current power relations, provide an essential framework for the ways that ethical choices are framed by key groups of people as they take up different, sometimes opposing, ethical positions. I argue that practising ethically in such a service is not helpfully reduced to a single event, a treatment decision aimed at achieving the morally 'right' outcome, but an extended process in time. In the charged debate surrounding the recognition of these young people's needs, we must do more to promote responsible debate about the scope of sound ethical practice.

ADOLESCENT PATIENTS AND THE CLINICAL DECISION ABOUT THEIR HEALTH.

OBJECTIVE: To carry out a review of the literature on adolescents' participation in decision making for their own health. DATA SOURCES: Review in the Scientific Electronic Library Online (SciELO), Latin American and Caribbean Health Sciences Literature (LILACS) and PubMed databases. We consider scientific articles and books between 1966 and 2017. Keywords: adolescence, autonomy, bioethics and adolescence, autonomy, ethics, in variants in the English, Portuguese and Spanish languages. Inclusion criteria: scientific articles, books and theses on clinical decision making by the adolescent patient. Exclusion criteria: case reports and articles that did not address the issue. Among 1,590 abstracts, 78 were read in full and 32 were used in this manuscript. DATA SYNTHESIS: The age at which the individual is able to make decisions is a matter of debate in the literature. The development of a cognitive and psychosocial system is a time-consuming process and the integration of psychological, neuropsychological and neurobiological research in adolescence is fundamental. The ability to mature reflection is not determined by chronological age; in theory, a mature child is able to consent or refuse treatment. Decision-making requires careful and reflective analysis of the main associated factors, and the approach of this problem must occur through the recognition of the maturity and autonomy that exists in the adolescents. To do so, it is necessary to "deliberate" with them. CONCLUSIONS: International guidelines recommend that adolescents participate in discussions about their illness, treatment and decision-making. However, there is no universally accepted consensus on how to assess the decision-making ability of these patients. Despite this, when possible, the adolescent should be included in a serious, honest, respectful and sincere process of deliberation.

Respecting adolescents' confidentiality and reproductive and sexual choices.

Adolescents, defined as between 10 and 19 years old, present a growing challenge to reproductive health. Adolescent sexual intercourse contributes to worldwide burdens of unplanned pregnancy, abortion, spread of sexually transmitted infections (STIs), including HIV, and maternal mortality and morbidity. A barrier to contraceptive care and termination of adolescent pregnancy is the belief that in law minors intellectually mature enough to give consent also require consent of, or at least prior information to, their parental guardians. Adolescents may avoid parental disclosure by forgoing desirable reproductive health care. Recent judicial decisions, however, give effect to internationally established human rights to confidentiality, for instance under the Convention on the Rights of the Child, which apply without a minimum age. These judgments contribute to modern legal recognition that sufficiently mature adolescents can decide not only to request care for contraception, abortion and STIs, but also whether and when their parents should be informed.

Confidentiality in Pediatric and Adolescent Gynecology: When We Can, When We Can't, and When We're Challenged.

Maintaining confidentiality is an important aspect of adolescent health care. Different states and provinces have laws around the provision of confidential health care to minors for specific health concerns such as reproductive health, mental health and substance abuse. However, there are situations where confidentiality cannot be assured, particularly if the adolescent is being abused. Educating teens and parents about the circumstances in which confidentiality is necessary is sometimes challenging for the clinician. Moreover, with the advent of electronic medical records, patient portals and other requirements to share health information with parents and the adolescent patient, confidentiality is sometimes not easy to assure. The following is the Elsevier Lecture from the 2015 Meeting of the North American Society for Pediatric and Adolescent Gynecology.

An exploration of the ethical, legal and developmental issues in the care of an adolescent patient.

Providers of health care to adolescent patients face numerous challenges. In addition to increased risk for many health problems, adolescent patients may bring complex ethical, legal and developmental questions to bear as they seek medical services. This article describes the case of one such adolescent patient and discusses some of the attendant issues faced by her physician. For example, providing reproductive health care to teenage patients without the knowledge of parents or guardians requires familiarity on the part of providers with relevant state and federal law. Additionally, providers must be aware of financial barriers and they need to acquaint themselves with available services such as New York State's Family Planning Benefit Program. Attention to their patients' stages of cognitive and emotional development should inform providers' advice to adolescents, and an understanding of the importance that supportive adult relationships play during adolescence is essential to fostering healthy development. Open communication between adolescent patients and their parents or guardians should be encouraged, while maintaining the primary obligation of providing confidential care.

Heterozygote carrier testing in high schools abroad: what are the lessons for the U.S.?

The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue.