CHAPTER 3 Ethics and Legal Issues
ETHICS IN HEALTH CARE
The ethics of health care are embedded in the process whereby patients, family members, and clinicians engage in medical decision making by balancing personal, family, cultural/religious/spiritual, and professional values. These values lead to choices about medical care. Ethical decision making relies on values to determine what kinds of decisions are best or appropriate for all. Sometimes ethical decision making in medical care is a matter of choosing the least harmful option for a patient among many adverse alternatives. In the day-to-day practice of medicine, although all clinical encounters may have an ethical component, major ethical challenges are infrequent.
The legal system defines the minimal standards of behavior required of physicians and the rest of society through the legislative, regulatory, and judicial systems. The role of the law is to provide for social order and adjudicate disputes, not to address ethical concerns. An example is a teenager who seeks birth control information and a prescription and would like to keep this information confidential. The laws are clear and support the principle of confidentiality for teenagers who are competent to decide about such issues. Using the concept of limited confidentiality, parents, teenagers and the pediatrician may all agree to openly discuss serious health challenges, such as suicidal ideation and pregnancy. This reinforces the long-term goal of supporting the autonomy and identity of the teenager while encouraging appropriate conversations with parents.
Ethical problems derive from value differences among patients, families, and clinicians about choices and options in the provision of health care. Resolving these value differences involves several important ethical principles. Autonomy, which is based on the principle of respect for persons, means that competent adult patients can make choices about health care that they perceive to be in their best interests, after being appropriately informed about their particular health condition and the risks and benefits of alternatives of diagnostic tests and treatments. Paternalism challenges the principle of autonomy and involves the clinician deciding what is best for the patient based on how much information is provided. Paternalism, under certain circumstances, may be more appropriate than autonomy. These circumstances are usually emergency situations, when a patient has a serious life-threatening medical condition or a significant psychiatric disorder threatening oneself or others. Weighing the values of autonomy and paternalism can challenge the clinician. Other important ethical principles are those of beneficence (doing good), nonmaleficence (doing no harm or as little harm as possible), and justice (the values involved in the equality of the distribution of goods, services, benefits, and burdens to the individual, family, or society). In end-of-life decision making, the quality of life and how much suffering is too much become important considerations for the provision of palliative and hospice care (see Chapter 4). These principles apply to competent patients, who have the capacity for decision making and engage in the process of informed consent.
ETHICAL PRINCIPLES RELATED TO INFANTS, CHILDREN, AND ADOLESCENTS
Children vary from being totally dependent on parents or guardians to meet their health care needs to being more independent. Infants and young children do not have the capacity for making medical decisions. Paternalism by parents and pediatricians in these circumstances is appropriate. Adolescents (<18 years of age), if competent, have the legal right to make medical decisions for themselves. Children 8 to 9 years old can understand how the body works and the meaning of certain procedures, and by age 14 to 15, young adolescents may be considered autonomous through the process of being designated a mature or emancipated minor or by having certain medical conditions. It is ethical for pediatricians to involve children in the decision-making process with information appropriate to their capacity to understand. The process of obtaining the assent of a child is consistent with this goal.
The principle of shared decision making is appropriate, but this process may be limited because of issues of confidentiality in the provision of medical care. A parent's concern about the side effects of immunization raises a conflict between the need to protect and support the health of the individual and the public with the rights of the individual and involves ethical issues of distributive justice in regard to the costs and distribution of the vaccinations and responsibility for side effects.
LEGAL ISSUES
All competent patients of an age defined legally by each state (usually ≥18 years of age) are considered autonomous with regard to their health decisions. To have the capacity to decide, patients must:
These requirements need to be placed within the context of medical care and applied to each case with its unique characteristics. Most young children are not able to meet the requirements for competency and need others, usually the parent, to make decisions for them. Legally, parents are given great discretion in making decisions for their children. This discretion is legally limited when there is child abuse and neglect, which triggers a further legal process in determining the best interests of the child.
Because laws vary by state, it is important to become familiar with the state laws. State, not federal, law determines when an adolescent can consent to medical care and when parents may access confidential adolescent medical information. The Health Insurance Portability and Accountability Act of 1996 (HIPAA), which became effective in 2003, requires a minimal standard of confidentiality protection. The law confers less confidentiality protection to minors than to adults. It is the pediatrician’s responsibility to inform minors of their confidentiality rights and help them exercise these rights under the HIPAA regulations.
Under special circumstances, nonautonomous adolescents are granted the legal right to consent under state law when they are considered mature or emancipated minors or because of certain public health considerations, as follows:
ETHICAL ISSUES IN PRACTICE
Most often, the parent or guardian is the decision maker for young children. From an ethical perspective, clinicians should engage children and adolescents, based on their developmental capacity, in discussions about medical plans so that they have a good understanding of the nature of the treatments and alternatives, the side effects, and expected outcomes. There should be an assessment of the patient’s understanding of the clinical situation, how the patient is responding, and the factors that may influence the patient’s decisions. Pediatricians should always listen to and appreciate patients’ requests for confidentiality and their hopes and wishes. The ultimate goal is to help nourish children’s capacity to become as autonomous as is appropriate to their developmental stage.
Confidentiality
Confidentiality is crucial to the provision of medical care and is an important part of the basis for a trusting patient-family-physician relationship. Confidentiality means that information about a patient should not be shared without consent. If confidentiality is broken, patients may experience great harm and may not seek needed medical care. Patient-physician confidentiality is an important value of the medical profession. See Chapter 67 for discussion of confidentiality in the care of adolescents.
Ethical Issues in Genetic Testing and Screening in Children
The goal of screening is to identify diseases when there is no clinically identifiable risk factor for disease. Screening should take place only when there is a treatment available or when a diagnosis would benefit the child. Testing usually is performed when there is some clinically identifiable risk factor. Genetic testing and screening present special problems because test results have important implications. Some genetic screening (sickle cell anemia or cystic fibrosis) may reveal a carrier state, which may lead to choices about reproduction or create financial, psychosocial, and interpersonal problems (guilt, shame, social stigma, and discrimination in insurance and jobs). Confidentiality, beneficence, and the best interests of the child are the ethical principles involved in such decision making. Collaboration with, or referral to, a clinical geneticist is appropriate in helping the family with the complex issues of genetic counseling when a genetic disorder is detected or likely to be detected.
Newborn screening should not be used as a surrogate for parental testing. Examples of diseases that can be diagnosed by genetic screening, even though the manifestations of the disease process do not appear until later in life, are polycystic kidney disease; Huntington disease; certain cancers, such as breast cancer in some ethnic populations; and hemochromatosis. Parents may pressure the pediatrician to order genetic tests when the child is still young, for the parents’ purposes. Testing for these disorders should be delayed until the child has the capacity for informed consent or assent and is competent to make decisions, unless there is a direct benefit to the child at the time of testing.
Religious Issues and Ethics
When religious tenets interfere with the health and well-being of the child, the pediatrician is required to act in the best interests of the child. Freedom of religion does not justify children being harmed. When an infant or child whose parents have a religious prohibition against a blood transfusion needs a transfusion to save his or her life, the courts always have intervened to allow a transfusion. In contrast, parents with strong religious beliefs under some state laws may refuse immunizations for their children. However, state governments can mandate immunizations for all children during disease outbreaks or epidemics. By requiring immunization of all, including individuals who object on religious grounds, the state government is using the principle of distributive justice, which states that all members of society must share in the burdens and the benefits to have a just society.
Children as Human Subjects in Research
The goal of research is to develop new and generalized knowledge. Parents may give informed permission for children to participate in research under certain conditions. Children cannot give consent but may assent or dissent to research protocols. Special federal regulations have been developed to protect child and adolescent participants in human investigation. These regulations provide additional safeguards beyond the safeguards provided for adult participants in research, while still providing the opportunity for children to benefit from the scientific advances of research.
Many parents with seriously ill children hope that the research protocol will have direct benefit for their particular child. The greatest challenge for researchers is to be clear with parents that research is not treatment. This fact should be addressed as sensitively and compassionately as possible.