PD
Pediatrics

Medical Ethics

April 07, 2015.
Kathryn Weise, MD, MA, Associate Professor Of Pediatrics, Lerner College of Medicine atCase Western Reserve University; Staff Physician, Pediatric Institute, and Program Director, Cleveland Fellowship in Advanced Bioethics, Cleveland Clinic, Cleveland, OH

Educational Objectives

The goal of this program is to improve recognition and management of ethical issues that may arise in pediatrics. After hearing and assimilating this program, the clinician will be better able to:

1. Recognize basic ethical principles that should guide pediatricians’ practices.

2. Identify stakeholders with decision-making power under specific circumstances.

3. Apply the concept of consent to minors.

4. Navigate disagreements with parents arising from religious, philosophical, or cultural differences.

5. Make ethical decisions when treating critically or terminally ill patients.

Summary

Medical ethics: applies to moral aspects of clinical decision making; ethical issues identified when something “seems wrong,” or when conflict in values among stakeholders (eg, parents, health care providers, patients) recognized; requires suspension of immediate response in favor of collecting relevant facts, understanding context, and examining principles that guide decision making

Ethical principles: autonomy — allowing those with decision-making capacity to decide for themselves; beneficence — doing good for patients; in pediatrics, protection of child’s best interests; nonmaleficence — avoiding doing harm; justice — includes fair allocation of limited health care resources; veracity — truth telling; fidelity — loyalty to patients and colleagues without breaching professional boundaries; confidentiality — respecting privacy of patients, families, and colleagues; may need to be broken to protect vulnerable patients

Decision making: in pediatrics, autonomy may need to be replaced with limited degree of paternalism because children may not have developed understanding of complex medical decisions; pediatricians and parents must act in best interest of child even if actions conflict with wishes of child; pediatricians may need to act against wishes of parent to protect interests of child, such as in cases of suspected neglect or abuse; children develop ability to be involved in decision making over time; growing body of neuroscience indicates cognitive and emotional development mature at different rates, with final convergence of decision-making abilities well after childhood; some adolescents, particularly those with prior experience with chronic or recurring illness, have good understanding of medical information and may be able to make medical decisions; pediatricians may support their growing understanding by, eg, asking for assent from children when performing procedures or beginning treatments; when refusal would not violate best interests of child, dissent should be honored

Giving consent: parents give permission rather than consent (which can only be given for oneself), but process similar; pediatricians must provide parents with information needed to make decisions (eg, risks, benefits, alternatives), document interactions, and repeat as often as needed; for children in foster care, legal decision maker usually fostering agency rather than biological or foster parents; determine which kinds of decisions must be made by foster agency vs biological parents, and which major events in foster child’s medical care should be shared with biological parents

Managing disagreement: disagreements caused by differences in social, cultural, and religious views; pediatrician must attempt to understand families’ values, then educate them and try to reach therapeutic alliance; however, if decision made by parent or guardian places child at risk for significant imminent harm, pediatrician must seek means of overriding parental decision, which may require involvement of court; more commonly, physician must act as mandated reporter and report incident to child protection agency; pediatrician must uphold duty to act in interests of child over family or medical practice; familiarity with local legal processes for managing suspected abuse or neglect important

Religious exemption for medical care: American Academy of Pediatrics has affirmed that family’s religion must be respected but that religious beliefs do not justify endangering children; although applicable state laws may appear to imply that neglect or abuse of child cannot be reported if actions based on religious beliefs, this view not ethically supportable; assess whether to report family by determining imminence and seriousness of potential harm, and whether professionally acceptable alternatives exist; eg, most pediatricians would not report family for refusing vaccination because risk relatively small but would report refusal of blood transfusion for life-threatening hemorrhage

Respecting confidentiality of adolescents: with respect to issues of mental and sexual health, has strong legal support in most states; supports respect for growing autonomy of child and helps maintain trust, which increases likelihood of teen continuing to receive health care; pediatricians must disclose which events may require disclosure to parents or officials, such as diagnosis of reportable sexually transmitted disease, serious health threats, or concerns about suicide or violence toward another; explore state laws about disclosure of pregnancy or pregnancy termination

Results of genetic testing: some information (eg, genetic variations not yet linked to particular conditions or with no actionable value) may have unknown implications; pediatricians can, with help of genetic counselors, counsel parents about decision to disclose findings to child; family members may benefit from knowledge of potentially inheritable conditions, but primary obligation is to patient, including confidentiality; controversy exists about whether geneticists should disclose abnormal findings that will not cause illness until adulthood, or those that have unclear implications; some experts recommend waiting until adolescents become adults (ie, when they can decide for themselves whether they wish to be informed); in complex situations, ethicists with relevant expertise should be consulted

Enhancements: eg, use of growth hormone in child not truly growth hormone-deficient, use of behavior-altering medications to improve school performance or lessen performance anxiety; considerations — medical and financial risks of treatment vs potential benefits; justice (ie, enhancement may not be available to all children); broader social consequences of, eg, use of cochlear implants for deafness, established procedures to prevent menstruation in developmentally disabled child; enhancements may benefit family unit, but primary obligation is to child

Transplantation: organ procurement agencies follow guidelines to determine which children receive transplant; guidelines based on algorithms that include assessment of likelihood of benefit to recipient and evaluation of risk to donor (if living) and family unit (if donor is parent); ethics consultants can help ensure respect of recipient’s and donor’s interests independently; to respect child’s developing autonomy and ensure child does not feel overt or implied pressure from family, enlist ethics consultant or advocate whenever minor considered as live donor

Interventions for disabled child: when determining whether interventions benefit disabled child or add to burdens, assess quality of life from viewpoint of patient to avoid imposing value system on child or family; forgoing available treatment might ultimately be in child’s best interest; base decision on comprehensive assessment of child’s experience, not disability alone

Treatment of critically or terminally ill child: development of treatment goals on which physicians and parents agree can be challenging when outcome or quality of life uncertain; differences in values may foster disagreement; medical futility — exists when particular intervention objectively judged by expert to have no chance of meeting particular medical goal; does not apply when quality of life or relative use of resources being considered (largely subjective issues); withdrawing treatment — morally equivalent to withholding it; either approach ethically supportable if comfort to patient outweighs burdens of continued treatment or if treatment cannot achieve goals of care; physicians not morally obligated to either begin or continue treatment that has not been effective or that would cause harm; physicians can make such decisions (eg, whether to use cardiopulmonary resuscitation) against wishes of parents as long as truthfulness and transparency maintained; strive to reach agreement with parents through good communication and/or enlisting support (eg, clergy and/or ethics consultants); similar considerations apply to withholding or withdrawing medically supplied nutrition, but agreement with parents particularly important

End-of-life care: pain and suffering at end of life often managed by increasing doses of opioids and anxiolytics; rule of double effect recognizes that physicians have obligation to relieve suffering and that this may require higher-than-usual medication doses; such drug levels may have anticipated consequences (eg, respiratory depression [ethically acceptable outcome]) but may be considered obligatory if given in response to increasing pain and anxiety rather than with intention of purposefully hastening death; if no suffering evident because patient unconscious, limitation of treatment based on suffering difficult; discuss with parents potential benefit vs burden of new interventions; physician-assisted suicide for children not accepted because children not considered capable decision makers; euthanasia not legal or ethically condoned for any patients

Brain death: among nationally recognized definitions of death; rigorous standards needed to avoid misdiagnosis; most (but not all) states allow discontinuation of medical treatment after diagnosis of death by neurologic criteria even if family objects based on religious beliefs; prolongation of treatment to allow family members to arrive or pursue organ donation acceptable

Advance directives for children: developed by few states because such legal documents can only be created by those with decision-making capacity, and children might not have clear concept of death as permanent condition; some children and adolescents demonstrate good understanding of their conditions and may have had discussions with parents or caregivers about end-of-life wishes (these expressions should carry significant weight in decision making)

Premature infants: decisions to pursue or forgo treatment of extremely premature newborn should be conducted with extreme caution because it may take time for clear prognosis to be developed; if possible, engage experts in making decisions about life support before impending premature delivery; newborn considered viable by gestational age should be evaluated for prognosis even if parents reluctant to pursue treatment out of concern for possibility of future disability; later, if infant determined incapable of surviving without extreme burdens, more deeply considered decision making can occur; ethical consideration requires that decision making be based on doing most good and least harm to infant (rather than on medicolegal concerns); if ethical soundness of limitation of support unclear, pursue ethics consultation; ethicists act only as consultants (medical team ultimately responsible for making and implementing medical decisions)

Newborn screening: common practice, sometimes requiring only cursory permission from parents; some support mandatory newborn screening with ethical justification that society has responsibility to promote child welfare through early detection and treatment (not universally agreed upon; parents currently have legal right to refuse screening)

Conflicts of interest: impossible to completely avoid; never place personal or employers’ interests above those of patients; recognize sources and manage conflicts by acknowledging them openly; report them to employers, partners, and editors of journals; in some hospitals, potential conflicts of interest must be published online

Gifts: studies show that even token gifts (eg, pens with company logo) can change practice patterns in ways that benefit gifting company; receipt of gifts from parents changes relationship and may change decision making in ways that may not support best interest of child

Medical testimony: ethically supportable for physicians if underlying goal is helping patients or supporting truthfulness about medical errors; not ethical if expert witness motivated by financial or professional interests to be less than truthful, withhold information, or place monetary gain above duty to patients

Professional boundaries: to ensure logical and thorough evaluation of medical problems, delivering medical care to family members or friends with whom no official physician-patient relationship exists generally considered ethically or professionally unacceptable; maintaining good record keeping and confidentiality by usual means of documentation may be difficult without formal physician-patient relationship; not professionally acceptable to develop romantic relationship with patient or patient’s close family member because loyalties can be swayed

Medical errors: must be disclosed in timely, truthful manner; institutions may have best practices for disclosing errors and may encourage involvement of other parties (eg, risk management teams); malpractice claims can sometimes be avoided by being truthful and compassionate about disclosure of errors; pediatricians who develop concerns about performance of colleagues must intervene to protect best interests of patients; proceed carefully, respectfully, and with guidance of trusted colleague or administrative leaders; maintain confidentiality of professionals involved

Complementary and alternative practices: good medical practice requires awareness of patients’ use of such practices, as they may affect other medications or treatments; providing complementary and alternative medicine therapies ethically supportable if provider working within standards of medical care, treatment monitored for quality and outcomes, and provider transparent with patients and decision makers about data on treatment; representing treatment as effective if assertion not based on accepted studies, or substituting treatment of unknown effectiveness for one with known effectiveness not ethically supportable

Research ethics: primary ethical consideration in pediatric research is finding balance between protecting children from risks of research while supporting need to conduct studies that will benefit other children; risks should be minimized and be reasonable with respect to anticipated benefits to participants and importance of knowledge; Institutional Review Boards (IRBs) must ensure certain factors taken into consideration, including risks and potential benefits to participants, and whether study design adequate to justify risk and resources used; IRBs may also address conflicts of interest; research ethics specialist can help design ethical protocols; children with capability must voluntarily assent to involvement if research has no therapeutic benefit to them, and dissent must be respected; when study offers direct benefit to child that would not otherwise be available, parental permission required but not assent of child; child’s welfare must always take precedence over scientific goals of research; treating physician involved in obtaining permission and assent should avoid placing pressure on family based on relationship

Acknowledgments

Dr. Weise was recorded for the Audio Digest Pediatrics Board Review Course. For information on CME activities offered by the Audio Digest Pediatrics Board Review Course, please call 1-800-423-2308 or visit www.audio-digest.org.

Readings

Disclosures

In adherence to ACCME Standards for Commercial Support, Audio Digest requires all faculty and members of the planning committee to disclose relevant financial relationships within the past 12 months that might create any personal conflicts of interest. Any identified conflicts were resolved to ensure that this educational activity promotes quality in health care and not a proprietary business or commercial interest. For this program, the faculty and the planning committee reported nothing to disclose.

Acknowledgements

Acknowledgments

CME/CE INFO

Accreditation:

Lecture ID:

PD611301

Qualifies for:

Ethics

Expiration:

This CME course qualifies for AMA PRA Category 1 Credits™ for 3 years from the date of publication.

Instructions:

To earn CME/CE credit for this course, you must complete all the following components in the order recommended: (1) Review introductory course content, including Educational Objectives and Faculty/Planner Disclosures; (2) Listen to the audio program and review accompanying learning materials; (3) Complete posttest (only after completing Step 2) and earn a passing score of at least 80%. Taking the course Pretest and completing the Evaluation Survey are strongly recommended (but not mandatory) components of completing this CME/CE course.

Estimated time to complete this CME/CE course:

Approximately 2x the length of the recorded lecture to account for time spent studying accompanying learning materials and completing tests.

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