Ethics and The Adult Educator

1. Ethics and The Adult Educator Ethical Issue Presentation Nursing of Children: Genetics Trisomy 18 By Pamela Dozier BSN, RNC-NIC

2. Objectives • Identify ethical issues surrounding Trisomy 18. • Analyze clinical challenges of Trisomy 18 and its impact on families and the healthcare system. • Identify ethical principles breeched. • Discuss ethical policies used to resolve conflict/challenges. • Identify available resources within the healthcare institution to assist parents with the decision-making process. • Identify available resources within your institution to assist nurses with ethical dilemmas. • Discuss nursing implications and the nurse educator role in decision-making.

3. Introduction Characteristics of Trisomy 18 or Edward syndrome Clinical challenges: Impact on families Impact on healthcare system

4. TRISOMY 18

5. Literature Review Ulrich et al. (2010) Nursing survey –most frequently occurring ethical issues in the workplace: Protection of patients’ rights Autonomy Informed consent Surrogate decision making

6. Literature Review Pavlish et al. (2011) Questionnaire for nurses Identified early indicators Identified risk factors for ethical issues (clinical setting) Weigand and Funk (2012) Descriptive study: moral distress indicated that the majority of clinical situations that resulted in moral distress were related to end of life which included medical futility.

7. Ethical Dilemma Case Study Elijah: History- 32 week preemie born to 38 year old Hispanic immigrant-primary language- Spanish, no prenatal care Diagnosis: Genetic diagnosis of Trisomy 18 multiple congenital anomalies Cardiac defects (ASD,VSD,Hypoplastic left heart) Grade II Intraventricular hemorrhage Current : Requires ventilator support, coded 3 times and now with decreased urine output, morphine drip

8. Ethical Principles Breeched Nonmaleficence Threat to parent-not included on decision making Nurse not providing proper pain management Beneficence Nurses lack of compassion Approached mother without supportive figure present Autonomy Exclusion of father from the decision making

9. Ethical Dilemma Solution Using Ethical theory: Communitarianism-focus on good of the community. (family/patient/nicu community) Using Ethical principle: Nonmaleficence Beneficence Autonomy

10. Ethical Policy Testimony First policy: Educate the parents as to the diagnosis of Trisomy 18 and to provide resources to assist them with the decision-making process. (Eden and Callister 2010) Second ethical policy: Regarding advocacy would be to request assistance of additional resources to assist the parents with decision making. (Palliative Care/HELP)

11. Nursing Implications Role of the adult educator Include ethical theory into educational training More dialogue is needed regarding ethics education and reducing stress (Ulrich et al. 2010). Future for nursing practice Expanding ethical research to include early identification of ethical conflicts (Pavlish et al. (2011)

12. Conclusion Ethical dilemmas not so uncommon today. Survival rates for critically ill infants has increased. Eden and Callister (2011) Challenges the healthcare industry-allocation of resources. Need to bridge the gap of theory and integrate ethical decision making into nursing practice.

13. References American Nurses Association (2001). Code of ethics for nurses. Retrieved from: http://nursingworld.org/FunctionalMenuCategories/AboutANA/Leadership-Governance/Nursing-Code-of-Ethics.pdf Boos, V., Okah F., Swinton, C., Wolff, D., Haney, B. (2010) The Comprehensive Care Rounds Facilitating multidisciplinary communication among caregivers of complex patients in the neonatal intensive care unit, Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses 10 (6), pp. 301-306. Bosek, M .S., & Savage, T. A. (2007). The Ethical Component of Nursing Education Integrating Ethics into Clinical Experience. Philadelphia, PA: Lippincott Williams and Wilkins.

14. References Eden, L., & Callister, L. (2010) Parent involvement in end-of-life care and decision making in the newborn intensive care unit: an integrative review. Journal Of PerinatalEducation, 19(1), 29-39. Gilmour, J., Harrison, C., Cohen, M. H., & Vohra, S. (2011). Pediatric Use of Complementary and Alternative Medicine: Legal, Ethical, and Clinical Issues in Decision-Making. Pediatrics, 128;S149-54. National Association of Neonatal Nurses (2010). Palliative Care for Newborns and Infants (Position Statement # 3051), Advances in Neonatal Care 10(6), pp.287-293 Glenview, IL: Lippincott, Williams & Wilkins. National Center for Advancing Translational Sciences (n.d.) Trisomy 18 Retrieved from: http://rarediseases.info.nih.gov/gard/6321/trisomy-18/resources/1

15. References Pavlish, C., Brown‐Saltzman, K., Hersh, M., Shirk, M., & Nudelman, O. (2011). Early indicators and risk factors for ethical issues in clinical practice. Journal Of Nursing Scholarship, 43(1),13-21. Pressel, D., Rappaport, D., & Watson, N. (2008). Nurses’ assessment of pediatric physicians: are hospitalists different?...including commentary by Seiple P., Journal Of Healthcare Management 53(1),14-25. Ulrich, C. M., Taylor, C., Soeken, K., O’Donnell, P., Farrar, A., Danis, M., & Grady, C. (2010). Everyday ethics: ethical issues and stress in nursing practice. Journal of Advanced Nursing, 66 (11), 2510-2519. Wiegand, D., & Funk, M. (2012). Consequences of clinical situations that cause critical care nurses to experience moral distress. Nursing Ethics,19(4).