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Medical futility in children's nursing: making end-of-life decisions
Irene O Brien1, Anita Duffy, Ellen O Shea
1Our Lady's Hospital for Sick Children, Crumlin, Dublin.
Insights
Navigating end-of-life decisions for infants involves balancing parental autonomy and the child's best interests. Healthcare professionals, especially nurses, play a crucial role in supporting families through these challenging choices regarding medical futility.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Neonatal Medicine
Background:
- End-of-life care for infants presents significant emotional and ethical challenges for parents and healthcare providers.
- Decision-making regarding treatment withdrawal or withholding is particularly complex, often involving the concept of medical futility.
- Parental autonomy and the child's best interests are central ethical considerations in these situations.
Purpose of the Study:
- To discuss the ethical and legal concepts of parental autonomy and the child's best interests in determining medical futility for neonates and infants.
- To explore the multifaceted role of nurses in end-of-life care for children, including advocacy and family support.
- To highlight the necessary skills and knowledge for nurses involved in pediatric end-of-life decision-making.
Main Methods:
- Conceptual analysis of ethical principles: parental autonomy and the child's best interests.
- Discussion of legal frameworks and court involvement in cases of parental disagreement with medical decisions.
- Exploration of the nursing role in advocating for parents and facilitating communication regarding medical futility.
Main Results:
- Disagreements between parents and medical staff regarding treatment decisions may lead to court intervention, with decisions based on the child's best interests.
- Nurses are vital in communicating parental wishes to medical teams and providing essential support to families.
- Effective nursing practice in this area requires advanced communication skills and a strong understanding of ethical and legal aspects of medical futility.
Conclusions:
- Balancing parental autonomy with the child's best interests is critical when addressing medical futility in infant end-of-life care.
- Nurses require specialized training in communication, ethics, and law to effectively support families and advocate for children at the end of life.
- A collaborative approach involving parents, healthcare professionals, and potentially the courts is necessary for ethical decision-making in pediatric end-of-life care.
Abstract:
Caring for infants at end of life is challenging and distressing for parents and healthcare professionals, especially in relation to making decisions regarding withholding or withdrawal of treatment. The concept of medical futility must be considered under these circumstances. Parents and healthcare professionals should be involved together in making these difficult decisions. However, for some parents, emotions and guilt often are unbearable and, understandably, parents can be reluctant to make a decision. Despite the recognition of parental autonomy, if parents disagree with a decision made by medical staff, the case will be referred to and solved by the courts. The courts' decisions are often based on the best interest of the child. In this article, the authors discuss the concepts of 'parental autonomy' and 'the child's best interests' when determining medical futility for infants or neonates. The role of the nurse when caring for the dying child and their family is multifaceted. While nurses do not have a legitimate role in decision making at the end of life, it is often nurses who, through their advocacy role, inform doctors about parents' wishes and it is often nurses who support parents during this difficult time. Furthermore, nurses caring for dying children should be familiar to the family, experienced in end-of-life care and comfortable talking to parents about death and dying and treatment choices. Children's nurses therefore require advanced communication skills and an essential understanding of the ethical and legal knowledge relating to medical futility in end-of-life children's nursing.
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