18.2 Healthcare Ethics, Pediatric Consent, Assent, Palliative Care & End-of-Life Decision-Making

Pediatric Consent, Ethics, Palliative Care and End-of-Life Decisions

Quick Answer: Identify the legal decision-maker, engage the child at an appropriate developmental level and check consent and confidentiality separately. Use palliative care alongside disease-directed care. For an eligible child who elects hospice, Medicaid and qualifying CHIP coverage may continue treatment of the terminal condition under federal concurrent care. Determining death by neurologic criteria follows a separate clinical and legal process.

Engage the child and the authorized decision-maker

Respect for autonomy means seeking the child's perspective and involving the child as their abilities develop. Beneficence and nonmaleficence require comparing likely benefits, harms and burdens. Justice calls for equitable access and fair decisions. Use qualified language assistance as needed, and explore what matters to the child and family.

Permission and consent. Verify who can make this decision under applicable law and custody arrangements. Discuss the condition, proposed treatment, benefits, risks and reasonable alternatives, including forgoing treatment. Confirm understanding, ability to decide and voluntariness. Document who agreed and what was discussed. A parent or legal guardian usually gives permission when the child lacks legal authority for the decision.

Assent and dissent. Explain the situation and what the child can expect, assess understanding and pressure to agree, and invite affirmative agreement when appropriate. AAP gives about age seven as a developmental example, with participation based on ability and the decision at hand. Silence alone does not show agreement. Explore a child's objection, address pain or fear and consider alternatives or a pause when feasible. When urgent care must proceed, be honest about what is necessary and offer choices the child can meaningfully make. Research assent follows separate institutional review board and regulatory requirements, including limited exceptions.

Serious disagreement. Parents generally have latitude to choose among medically reasonable options. If a refusal puts the child at significant risk of serious imminent harm or fails to meet the child's basic interests, seek resolution through communication and less restrictive alternatives when time allows. Involve the attending team, ethics, social work and legal or protective services as appropriate. For example, during life-threatening bleeding, clarify which treatments the family accepts, continue available lifesaving stabilization and activate the local urgent escalation process. Follow applicable emergency authority and reporting law. When a decision-maker cannot be reached, provide time-critical emergency care as permitted, document the need and efforts to contact the surrogate, and seek permission for care that can safely wait.

AAP informed permission and assent · Pediatric decision-making consensus · HHS research assent guidance

Minor consent and confidentiality

Start with the patient's age, decision-making ability, requested care and jurisdiction. State law can allow a minor to consent based on legal status, a mature-minor pathway where recognized, or the type of care. Emancipation and its scope depend on how the jurisdiction defines and recognizes it. Age or apparent maturity alone cannot establish authority. Laws covering STI, reproductive, substance use or mental health care can differ by service, setting, age and circumstances.

Determine caregiver notification, proxy access and confidentiality separately from consent. For example, HIPAA's personal-representative rules incorporate applicable law and exceptions for care to which a minor can independently consent. Discuss confidential contact, portal access and billing disclosures. Follow legally required reporting and involve the care team to protect the patient when there is an immediate safety concern. AAP adolescent confidentiality policy · HIPAA personal-representative rules

Provide palliative care, hospice and symptom relief

Palliative care supports a child with serious illness and the family through symptom relief, communication, goals of care and coordination. It can begin early, alongside disease-directed treatment. Ask about hopes, burdens and practical needs. Involve palliative specialists for complex symptoms or decisions. Hospice provides interdisciplinary end-of-life services under eligibility and election rules. Discuss home or inpatient options, available local support, access to medications and equipment, who to call if symptoms worsen and bereavement support.

Under ACA §2302, an eligible child younger than 21 who elects hospice through Medicaid or an applicable CHIP program may continue covered treatment for the terminal condition. The physician's hospice certification of a terminal prognosis of six months or less still applies. Medicaid and Medicaid-expansion CHIP apply EPSDT medical-necessity requirements. A separate CHIP program must allow concurrent treatment if it offers hospice. Verify individual services with the payer, specialty team and hospice. For a Medicaid-enrolled child with relapsed leukemia, the team can coordinate hospice and covered leukemia treatment, including assessing whether requested transfusions can be provided and where. CMS hospice benefits · CMS concurrent hospice guidance

For life-sustaining treatment, discuss likely benefit and burden, the child's and family's goals, and whether a time-limited trial with defined reassessment would help. The same ethical reasoning applies to withholding and withdrawing treatment, with decisions implemented under applicable law and policy. Clarify what a resuscitation limitation covers. Arrange an explicit symptom plan, communicate it across teams and prepare the family for uncertainty in the dying process. If disagreement persists about a requested treatment with little expected benefit, seek a second clinical opinion and ethics support. Follow the institutional review process, including transfer and appeal options when applicable. AAP guidance on potentially nonbeneficial treatment

The principle of double effect distinguishes intended relief from foreseeable adverse effects. Give medication in proportion to assessed suffering, reassess benefit and toxicity and adjust the regimen. The aim is relief, and the adverse effect cannot be the means of achieving it. Respiratory depression calls for clinical evaluation in the context of the comfort plan.

Complementary approaches. If a family requests a calming practice or a supplement, ask how they use it, what they hope it will accomplish and what the child prefers. An age-appropriate calming activity can accompany symptom treatment. For an herbal product, record the ingredients and dose, check evidence and interactions with the pharmacist and avoid administering an unverified product during acute care. Discuss options without delaying necessary treatment. AAP pediatric end-of-life guidance · NCCIH pediatric complementary approaches

Pediatric death by neurologic criteria

The 2023 AAN/AAP/CNS/SCCM U.S. consensus guideline describes evaluation for brain death/death by neurologic criteria (BD/DNC). The clinical evaluation establishes coma, absence of brainstem reflexes and absence of spontaneous breathing in response to an adequate stimulus. Clinicians must meet local legal, institutional and competency requirements. Inform the family in advance, offer the option to observe and explain possible spinal reflex movements. The guideline does not require consent unless applicable law, regulation or institutional policy requires it.

Establish prerequisites before starting

• Confirm a catastrophic, permanent brain injury from a mechanism known to cause BD/DNC. Imaging should be consistent with the cause and severity. Do not evaluate infants younger than 37 weeks corrected gestational age. For a primary infratentorial injury, confirm catastrophic supratentorial injury on conventional imaging before starting.
• For a child younger than 24 months, wait at least 48 hours after the acute brain injury before starting evaluation. For patients 24 months or older with acute hypoxic-ischemic brain injury, wait at least 24 hours after the injury. After an intervention for intracranial pressure, allow time based on the injury and imaging to ensure permanence.
• Maintain core temperature at or above 36°C. If it was 35.5°C or lower, wait at least 24 hours after rewarming to 36°C or higher before evaluation. Check both the injury and temperature requirements when both apply.
• Maintain systolic and mean arterial pressure at or above the fifth percentile for age, with targets near known chronic baseline when appropriate. Exclude or correct severe metabolic, acid-base and endocrine derangements and exclude CNS depressant effects and pharmacologic paralysis. The guideline has an ancillary pathway for metabolic derangements that cannot be corrected if the exam and apnea findings are otherwise consistent. When relevant drug levels are unavailable, allow at least five half-lives, longer when clearance may be delayed. When neuromuscular blockade is a concern, verify recovery using train-of-four or preserved deep tendon reflexes.

Conduct the clinical evaluation

In children, two qualified clinicians perform separate independent neurologic examinations at least 12 hours apart, with one apnea test after each exam. The 12-hour interval also applies to eligible neonates. This is distinct from the observation required before starting the first exam.

Assess unresponsiveness and absence of brain-mediated motor responses. Test the required brainstem reflexes, including pupillary light, corneal, oculovestibular, gag and cough responses. Evaluate the oculocephalic reflex when safe. When it is absent or cannot safely be tested, test both oculovestibular reflexes. If the oculocephalic test is unsafe but both oculovestibular reflexes are absent, that omission alone does not require ancillary testing. In infants younger than six months, also check for absence of sucking and rooting reflexes. Spinal reflexes can persist. If any finding indicates brain-mediated activity, the child does not meet BD/DNC criteria.

Interpret apnea testing

Confirm that the child can tolerate the test. In a child without chronic carbon dioxide retention, normalize baseline pH and carbon dioxide. Preoxygenate with 100% oxygen for at least 10 minutes to a PaO₂ above 200 mmHg and obtain the pretest arterial blood gas. The pediatric guideline maintains oxygenation with 100% oxygen via ventilator CPAP with mandatory breaths stopped, or via a flow-inflating bag with a functioning PEEP valve. Tracheal oxygen insufflation is an adult technique in this guideline. Observe for spontaneous breathing and monitor oxygen saturation and hemodynamics throughout. Abort for spontaneous breathing, systolic or mean pressure below the age-specific fifth percentile despite support, progressive desaturation below 85%, or an arrhythmia with hemodynamic instability.

In a child without chronic carbon dioxide retention, apnea findings support BD/DNC when all are present: no spontaneous respirations, arterial pH below 7.30, $PaCO_2$ at least 60 mmHg and $PaCO_2$ at least 20 mmHg above the pretest baseline. For known chronic retention, measure the rise from the known premorbid baseline. When chronic retention is suspected but the premorbid baseline is unknown, the guideline requires ancillary testing in addition if the apnea results otherwise meet criteria.

Use ancillary testing for defined indications

Consider the guideline's ancillary pathway when required clinical components cannot safely be completed or reliably interpreted. Perform the neurologic examinations and apnea tests to the fullest extent possible. Evidence of brain-mediated activity ends the determination. Ancillary testing cannot bypass hypothermia, high sedative levels, or otherwise testable components.

Acceptable pediatric ancillary tests include conventional four-vessel catheter angiography and radionuclide cerebral perfusion studies meeting the guideline specifications. EEG cannot establish absence of brainstem function, and transcranial Doppler is not an accepted pediatric ancillary test under the 2023 guideline. With clinical determination, time of death is when the qualifying blood gas results from the final apnea test are reported. When an ancillary test is required and performed, use the time the attending clinician documents that its results are consistent with BD/DNC.