AMA Journal of Ethics
“What should we do when families refuse testing for brain death” Published December 2020.
By Robert D. Truog, MD, MA, Wynne Morrison, MD, MBE, and Matthew Kirschen, MD, Ph.D.
This case study shows a scenario in which a young child after undergoing a terrible drowning accident is shown to have no improvements in his well-being even several days after the incident. The provider that is caring for the patient believes that based on the patient’s clinical assessment, and exam findings, the patient may be brain dead. The provider initially conducts an apnea test to help diagnose brain death after briefly discussing the test with the child’s parents. The clinical assessment and apnea test show that the young child has no brain activity. After the apnea testing, the parents of the child are concerned because the child appeared uncomfortable during the test. The doctor offers repeat apnea testing to confirm the diagnoses of no brain activity, however, but now the parents of the child refuse to consent to the repeat testing stating that they never consented to the apnea test in the first place.
I believe that the ethical issue here may be one of autonomy vs justice as well as an issue with not disclosing adequate information to the parents of the child, so they are equipped enough to make an informed decision. The child in question in this case study is a 10-year-old boy who at this age and current state (comatose) cannot decide how they should be cared for, and his decision-making rights are delegated to his parents. Although the provider seems to provide the parents of the child with some information on his proposed next steps for the young child’s care, he does not provide full information on what the test is called, what it entails, and especially the negative risks that may come from apnea testing. By doing so the parents were not able to make a fully informed decision on whether to consent to the apnea testing and did what would be considered non-objection instead, and now the parents refuse to consent to repeat apnea testing.
The case stated in the end that the Dr. wonders how to proceed after the parents refuse to consent to re-testing. In a situation such as this, under the guidelines for the ethical conduct of PA’s the provider would be expected to respond to the issue in a both legal and moral way. The provider should try to rectify the initial current problem by explaining to the parents of the child that the procedure that was first described to them was indeed the sleep apnea test (since it appears that although the provider described the procedure to the parents before performing it the first time, the parents still did not understand the procedure itself is called apnea testing.) The provider should then discuss with the patients and try to respect their autonomy in the meantime while trying to find out from the parents what is the reason that they no longer want to proceed with the apnea testing (i.e., is it because of fear? misunderstanding? Moral concerns and unwillingness to subject their child to discomfort, etc.?) This may help the provider try to understand the parents better and see if there may be a way to still confirm the diagnosis and but also provide alternatives and maybe emotional support for the parents. Also, providing info on the dangers of sleep apnea testing and further explanations may help reassure the parents that the provider has the best interest of the child. I think the next best thing to do next here is to respect the autonomy of the parents of the child in the meantime with trying to resolve the current conflict of lack of informed consent and justice. If there is a need later on to involve the legal side of things, then the provider may consider the possibility of overriding the parent’s refusal to consent if it is applicable and there is enough legal basis to do so.
- What Should We Do When Families Refuse Testing for Brain Death? (2020). AMA Journal of Ethics, 22(12). https://doi.org/10.1001/amajethics.2020.986
- Nelson, R. L., & AAPA. (2001, February). Guidelines for ethical conduct for the PA profession. JAAPA: official journal of the American Academy of Physician Assistants. https://www.ncbi.nlm.nih.gov/pubmed/11523188.