Exploring the Ethical and Moral Implications of Requiring Informed Consent to Determine Death by Neurologic Criteria

Exploring the Ethical and Moral Implications of Requiring Informed Consent to Determine Death by Neurologic Criteria
Matthew J. Hibbs, Morgan C. Arnold, Mark S. Beveridge
Journal of Pain and Symptom Management, May 2023; 65(5)
The American Academy of Pediatrics published guidelines in 1987 providing criteria for the declaration of brain death for children. Multiple societies, including neurology and critical care, renewed these guidelines in 2011 to further standardize the brain-death exam. Despite clear guidelines, laws regarding brain death vary among states, including whether consent is required to perform neurologic testing.
To examine the role of parental consent in brain-death testing from an ethicolegal perspective as well as its potential to create clinician distress.
Case report
Patient is a 3-year-old, previously healthy male who suffered a tragic submersion injury requiring prolonged cardiopulmonary resuscitation. During the subsequent hospitalization, his clinical exam, head CT scan, and electroencephalogram demonstrated devastating, irreversible neurologic injury concerning for brain death. The family refused formal brain-death testing, instead requesting more time to allow for a miraculous recovery. The patient remains on life support after 5 weeks and is beginning to experience multiorgan dysfunction.
Many physicians feel that brain-death testing should not require parental consent. Despite this, states vary in their requirements for parental consent for brain-death testing. When legally permissible, there are competing ethical principles governing a family’s request to delay or refuse brain-death testing.The principle of informed consent reflects the culture change from a paternalistic physician-patient relationship to a collaborative, family-centered approach. However, the argument remains that brain-death testing offers no therapeutic benefit and has the potential to cause harm via apnea testing, thereby requiring informed consent. This case presentation will illustrate the varied legal landscape surrounding pediatric brain-death testing, the ethical principles involved, and the moral injury that can result.

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