Ethical Issues in Pediatric Primary Care

By Charbel on Apr 19, 2011 | In Health, Pediatric Primary Care: Well-Child Care

Christine L. McHenry

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Informed Consent

The process of informed consent consists of the following components:

Exemptions to informed consent
Informed Permission
Religious Exemptions

Religious exemptions for treatment

Religious exemptions for immunizations
Confidentiality

Justified infringements to confidentiality

Areas of heightened confidentiality
Children and Decision Making

Mature minors are individuals 14 years of age or older who have decision-making capacity

Emancipated minors are individuals under the age of 18 years who are living on their own without parental support and who are not subject to parental control
Gifts from Industry Representatives
Additional Reading

Ethics is a systematic reflection of right character and/or right conduct in a given situation. Ethics uses principles, rules, virtues, and values as guides in this systematic reflection. When these principles, rules, virtues, or values conflict, an ethical dilemma exists.
Recognizing ethical dilemmas is fairly easy in areas where medical technology is used, such as the newborn intensive care unit or the pediatric intensive care unit, and where questions about withholding or withdrawing life-sustaining treatment arise. In primary care pediatrics practicioners tend not to confront ethical dilemmas as frequently. Nevertheless, ethical dilemmas do exist in this area, and primary care providers must be sensitive to the possibility that they will arise. The following points address several issues that are commonly seen in both the inpatient and outpatient arenas of pediatric primary care.
I. Informed Consent
The concept of informed consent is based on the ethical principle of respect for persons and, more specifically, of respect for autonomy. Respect for autonomy asserts that all individuals with decisional capacity have the right to make their own decisions. Everyone has the right to informed consent.

A.
The process of informed consent consists of the following components:

1.
An individual with decisional capacity.

2.
Disclosure of information to this individual, including:

a.
The individual's condition (diagnosis and prognosis).

b.
Nature and purpose of the proposed treatment.

c.
Risks and benefits of the proposed treatment.

d.
Alternative treatments.

e.
Consequences if the proposed treatment is not accepted.

f.
Names of the health professionals who are to perform any procedure.

3.
Assessment of the individual's understanding of the information.

4.
Assessment of the individual's appreciation of the information (i.e., what does the information mean in relation to the individual's life plan?).

5.
The individual's voluntary agreement to treatment or nontreatment.

6.
The individual's authorization to proceed with treatment.

B.
Exemptions to informed consent. The following are exemptions to informed consent:

1.
Emergencies. Example: A patient comes to the Emergency Department in an unconscious state and in need of medical treatment.

2.
Waivers. Example: The individual with decision-making capacity specifically says that he or she does not want to know.

3.
Therapeutic privilege. Example: The physician intentionally withholds information from a patient with cancer because the physician thinks the information may harm the patient. This exception is controversial and should not be used frivolously.
II. Informed Permission
Only an individual with decision-making capacity may consent to medical care for himself or herself. In pediatrics, physicians commonly turn to the parents (or the legal guardian) of their patients for permission to treat. Informed permission also is based on the principle of respect for persons but, even more specifically, on protection of the vulnerable. In general, society believes that parents are in the best position to determine what is in the best interest of their child. The “best interest” concept involves the principles of beneficence and nonmaleficence; that is, balancing the benefits and risks of a proposed medical intervention with the hope of promoting the welfare of the child. The informed permission process is the same as the informed consent process.
III. Religious Exemptions
The First Amendment of the Constitution grants us religious freedom. This religious freedom gives freedom of belief and of practice as long as the practice does not infringe upon the rights of or potentially harm an innocent third party. In general, adult patients with decision-making capacity have the right to reject recommended treatment based on religious or other convictions. A dilemma arises, however, when parents reject recommended treatment for their children based on their religious convictions. Parents are required to provide “adequate” medical care for their children; if they do not, they face potential criminal charges under state child abuse and neglect statutes. How the term adequate is defined varies from situation to situation.

A.
Religious exemptions for treatment. When parents refuse medical treatment for their child based on religious conviction, the conflict for the physician is between wanting to respect the parents' wishes to raise their child according to their religious beliefs and doing what the health care provider believes is in the best medical interest of the child. How this conflict is resolved depends upon the nature of the illness (minor versus life-threatening), the prognosis with and without recommended treatment, and the nature of the recommended treatment (conventional versus experimental).

B.
Religious exemptions for immunizations. When parents bring their healthy child to a physician for well-child care and refuse immunizations based on religious convictions, preservation of the relationship with the parents should take precedence over trying to coerce them into agreeing to the immunizations. The physician should use this time to educate the parents about the recommended immunizations. If this is done in a nonthreatening manner, the parents are more likely to bring their child back for medical care. If, on the other hand, an epidemic of a preventable childhood disease is spreading and other children have been seriously ill or died, then serving the child's best interest might require the doctor to obtain a court order to immunize the child. A frequently asked question in the outpatient setting is, “What about immunizations for school?” The requirements vary from state to state; therefore the physician must familiarize himself or herself with the state's statute regarding religious exemptions for immunizations and admission to public school.
IV. Confidentiality
Confidentiality is based on the ethical principle and rule of respect for autonomy and fidelity. To treat illness more appropriately and to promote the health of their patients, physicians need access to personal, sometimes intimate information. Patients or parents will be more likely to share such information if they know it will be kept confidential. Confidentiality can be violated by deliberately disclosing this confidential information to another without the person's permission or by handling carelessly the information.

A.
Justified infringements to confidentiality. The following areas are justified infringements to maintaining confidentiality:

1.
Obligation to obey the law.

a.
Reporting child abuse, elder abuse, gunshot wounds, stab wounds, sexually transmitted diseases.

b.
Emergencies.

c.
Certain legal proceedings, such as a malpractice claim.

2.
Obligation to protect the welfare of the community. (Confidentiality may be breached to protect an innocent third party if the individual who may be harmed is identifiable, the harm to be averted is serious, and disclosure is the necessary minimum for protecting the third party.)

3.
Obligation to protect the individual. (In this case, the individual must present a clear danger to himself or herself.)

B.
Areas of heightened confidentiality. Areas of heightened confidentiality are usually specified by state statute. Examples include the following:

1.
Drug and alcohol rehabilitation.

2.
Psychiatric treatment.

3.
Minors seeking birth control and abortion (in some states).

4.
HIV infection.
V. Children and Decision Making
Frequently asked questions about children and decision making are the following:

How much say should a minor patient have in controlling his or her health care?

What should be done if the child and the parents disagree?
Obviously, the amount of participation and decision making by the child varies, depending on the nature of the decision and on the cognitive, moral, and personality development of the child. Ideally, as the child matures, he or she assumes more decision-making responsibility. Physicians should familiarize themselves with the concepts of the mature minor and the emancipated minor.

A.
Mature minors are individuals 14 years of age or older who have decision-making capacity. That is, they are capable of understanding their diagnosis and prognosis, the risks and benefits of proposed treatment, and the consequences if they refuse treatment. Mature minors are capable of giving informed consent to the same degree as an adult. If the treatment does not involve serious risk (e.g., treatment for a streptococcal pharyngitis), then the mature minor has the right to consent to such treatment without parental permission. A mature minor would not, however, have the right to consent to treatment that involves serious risk (e.g., cosmetic surgery or organ transplantation) without the permission of the parent or guardian.

B.
Emancipated minors are individuals under the age of 18 years who are living on their own without parental support and who are not subject to parental control. Historically, certain groups of individuals have been considered emancipated. They include minors in the military, married minors, and, in some states, minors who are pregnant or have a child. In addition, college students living on their own may be considered emancipated even if they are dependent on their parents to pay the bills. Emancipated minors are considered adults in the medical arena, and therefore parental permission is not required for treatment.
V. Gifts from Industry Representatives
The moment someone enters the medical profession he or she is confronted with the question of whether or not to accept gifts from industry representatives. These gifts range from a free pen to a free trip at a vacation resort, the cost of which is passed on to the patient. Obviously, industry representatives would not present health care professionals with gifts if this practice were not profitable on a larger scale. Such gifts have been shown to influence prescribing habits of physicians. The conflict is clear—industry's interest in earning a profit versus the physician's interest in promoting what is best for the patient. The question for all health care professionals is whether any gifts from industry should be accepted, even something as minor as a pen or a notepad. Or are certain gifts, such as drug samples for patients, acceptable? Health care providers must choose for themselves how they will answer this question. Asking themselves “Would you want your arrangements with an industry representative generally known to your colleagues and to your patients?” may help some doctors trying to make this decision.
ADDITIONAL READING
merican Academy of Pediatrics, Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95:314–317.
American Academy of Pediatrics, Committee on Bioethics. Religious objections to medical care. Pediatrics 1997;99:279–281.
American Medical Association, Council on Ethical and Judicial Affairs. Code of Medical Ethics. Current Opinions with Annotations 1998–1999 edition. Chicago, IL: American Medical Association; 1998.
American Medical Association, Council on Scientific Affairs. Confidential health services for adolescents. JAMA 1993;269:1420–1424.
Beauchamp TL, Childress JF. Principles of biomedical ethics, 3rd ed. New York: Oxford University Press; 1989.
Chren MM, Landefeld S, Murray TH. Doctors, drug companies, and gifts. JAMA 1989;262:3448–3451.
Etkind P, Lett SM, Macdonald PD, Silva E, Peppe J. Pertussis outbreaks in groups claiming religious exemptions to vaccinations. Am J Dis Child 1992;146:173–176.
Holder AR. Legal issues in pediatrics and adolescent medicine, 2nd ed. New Haven: Yale University Press; 1985.
Holder AR. Minors' rights to consent to medical care. JAMA 1987;257:3400–3402.
King NMP, Cross AW. Children as decision makers: guidelines for pediatricians. J Pediatr 1989;115:10–16.
Landwirth J. Religious exemptions in child abuse law. Inf Dis Child December 1989:14–15.
Margolis LH. The ethics of accepting gifts from pharmaceutical companies. Pediatrics 1991;88:1233–1237.
Midwest Bioethics Center Task Force on Health Care Rights for Minors. Health care treatment decision-making guidelines for minors 1995;11:A1–A16.
Ross LF, Aspinwall TJ. Religious exemptions to the inmmunization statutes: balancing public health and religious freedom. J Law Med Ethics 1997;25:202–209.
Sigman GS, O'Connor C. Exploration for physicians of the mature minor doctrine. J Pediatr 1991;119:520–525.
Wazana A. Physicians and the pharmaceutical industry. Is a gift ever just a gift? JAMA 2000;283:373–380.