Pediatric Patient Born with Anencephaly

Taylor Koerner
Chamberlain College of Nursing
Pediatric Patient Born with Anencephaly
As a nurse, you take an oath to always make sure you are an advocate for your patients. While providing medical care for patients you may find yourself in a situation where a decision needs to be made, that may not lead to a positive ending. When making these decisions you have to always do what is best for the patient, which can be easier said than done. Especially in the pediatric population where you are consulting with the patient’s guardian.
This specific ethical dilemma involves a pediatric patient who was born with anencephaly. Anencephaly is a serious birth defect where a baby is born without parts of the brain and skull (Centers for Disease Control and Prevention. 2017). In this specific case, the patient was born without a brain at all, leaving the patient incompatible with life. I became aware of the situation when I was sent to receive consent and documentation from the parents of the patient. The mother and father involved were not willing to accept the fact that their child was not going to make it. The prognosis for the patient was that he would never be able to perform normal activities of daily living such as breathing, eating, drinking, urinating or even talking on his own. The parents insisted that the medical staff do whatever they could to keep their child living. This resulted in the patient being hooked up to ventilators, feeding tubes, catheters and continuous monitoring. Even with the assistance from the machines, the child would be left in a vegetable state.
Ethical Principles
Ethical principles pertain to the right and wrong of an ethical issue, they are a guide to ethical reasoning and action (American Nurses Association. 2015). When making medical decisions it is important to take into consideration the four principles of ethics, these include autonomy, beneficence, nonmaleficence, and justice. All of which played a huge role in terms of ethical care for this patient. Autonomy is defined by the patient’s ability to make his own decisions, due to the patient’s condition he was unable to make decisions on his own. Beneficence is to promote good, in other words what is best for the patient. The decisions that were being made by the parents were not what was best for the patient knowing his prognosis. Nonmaleficence means to act in a way in which no harm is being done to others. The parents asked for the staff to continuously run test on their child, while he was hooked up to all these machines. This is causing intentional harm to the child when the end results will not change. While providing care, you have to look at what is fair to the patient which is justice.
ANA Code of Ethics
The Code of Ethics for Nurses with Interpretive Statements establishes the ethical standard for the profession and provides a guide for nurses to use in ethical analysis, and decision making (American Nurses Association. 2015). The code of ethics contains nine provisions in which define the nurse’s obligations to providing care for patients. Provision 1.2 describes the trusting relationship a nurse builds with her patient and family. It states that when a decision is made for a patient that is risky or self-destructive nurses have an obligation to address the behavior and to use this opportunity for educating and support to help eliminate the risks (American Nurses Association. 2015). With the patient’s diagnosis, everyone knew the only thing keeping the patient alive were the machines he was hooked up too. After 24 hours of running test and providing care for the patient, the medical staff came back into the room to discuss end of life care with the parents. With little to no acceptance from the parents, it was asked that the parents take some time and really think about things. The nurse returned to the room and sat down with the parents to assure they had were given the proper education on their child’s diagnosis. She discussed with them how the decisions that they were making were causing harm to their child. She explained how every time a test is performed it was only putting their son through way more then he needed to go through. Provision 6.1 states the environment and moral virtue is an obligation to do what is right (American Nurses Association. 2015). The right thing in this situation with the patient’s condition would be to say goodbye to their child and to let him go peacefully. There is no known cure or standard treatment for anencephaly, almost all babies born with anencephaly will die shortly after birth (Centers for Disease Control and Prevention. 2017). Provision 2.3 collaboration is where the patient has strong support and active participation of all health professions (American Nurses Association. 2015). The nurse sat with the parents as they held their child, showing empathy towards the parents as they began processing everything that was discussed. During this time, the family requires emotional support and counseling to cope with the birth of an infant with a fatal defect (Hockenberry, M. J., & Wilson, D. 2015).
The outcome of the Dilemma
The ethical dilemma defined by this situation is the decision process made by the parents to keep the child hooked up to numerous machines even though the patient would never be able to live on his own. Over the time frame, while caring for this patient, the situation did not improve. All of the tests that were ran just reinforced the diagnosis and the patient’s condition only remained stable due to the equipment that the child was hooked up too. After the support given by the staff, the parents prayed about it and decided that it was time to say goodbye. This was the outcome the staff had hoped for. It was tough to see the family suffer day after day, especially when the medical team knew there was nothing they could do to prevent it.
Resources Available
Resources that were made available to assist with dealing with ethical dilemmas, while providing care for this patient were the ANA code of ethics of nursing and the ethics committee consultants for the hospital. The Code of Ethics serves as a succinct statement of the ethical values, obligations, duties and professional ideals of nurses (American Nurses Association. 2015). These resources were very beneficial while providing care for the patient because it allowed the nurses to take a stand for what they felt was right. Alongside providing care for the patient and the family, they were able to respect the parent’s wishes for their child. The nurse was able to properly educate the parents on the child’s diagnosis and prognosis. The ongoing education allowed for the parents to ask questions and clear up anything that they did not understand. The ethics committee at the hospital was created to help patients, families, and healthcare providers when they face difficult ethical decisions (Beaumont Health. 2018). Additional resources that were available to the parents, were the neonatal palliative care team which was implemented as soon as the parents found out about their child’s diagnosis. The palliative care team was able to provide information in regard to end of life care for the parents. A chaplain was available for the parents to help support and provide comfort during this difficult time. I believe that medical staff incorporated all the resources into their care plan for the patient. The resources that were provided allowed the staff to feel comfortable with their ethical decisions and allowed the parents to see things from a different perspective.
References
American Nurses Association. (2015). Code of ethics for nurses with interpretive statements.
Silver Spring, MD: ANA, American Nurses Association.
Beaumont Health. (2018). Patient Rights and Responsibilities. Retrieved, from
https://www.beaumont.org/patients-families/patient-rights
Centers for Disease Control and Prevention. (2017). Birth Defects. Retrieved, from
https://www.cdc.gov/ncbddd/birthdefects/anencephaly.html
Hockenberry, M. J., & Wilson, D. (2015). Wong’s nursing care of infants and children (10th
ed.). St. Louis, MO: Elsevier/Mosby.

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