1. Module 4: Ethical/Legal Issues in Pediatric Palliative Care End-of-Life Nursing Education Consortium Pediatric Palliative Care C C E E N N L L E E C C E E N N L L E E

2. C C E E N N L L E E Ethics in Pediatric Palliative Care What ought to be Determining the best course of action Ethical issues are inevitable Societal changes

3. Pediatric Palliative Care C C E E N N L L E E Nurses Role in Addressing Ethical Issues Promoting family-centered care Respecting preferences Role models of clinical proficiency, integrity and compassion Balancing competing objectives

4. Pediatric Palliative Care C C E E N N L L E E Standards of Professional Nursing Practice ANA Code of Ethics Nurse Practice Act Standards for professional organizations

5. Pediatric Palliative Care C C E E N N L L E E Issues of Decision-Making and Communication Capacity Consent Assent Confidentiality

6. Pediatric Palliative Care C C E E N N L L E E A Mother's Touch

7. Pediatric Palliative Care C C E E N N L L E E Issues of Decision-Making and Communication (cont.) Disclosure  Previous belief in not discussing diagnosis  Explore reasons for not disclosing  The CHILD’S right not to know Hinds et al., 2010

8. Pediatric Palliative Care C C E E N N L L E E Ethical Issues in Palliative Care Prolongation of life  Curative intent  Acute therapeutic care  Life sustaining treatments (LST) Jonsen et al., 2006; Prince-Paul & Daly, 2010

9. Pediatric Palliative Care C C E E N N L L E E Ethical Issues in Palliative Care (cont.) Withholding/withdrawing of medical interventions  Balancing benefits and burdens  Withdrawal of treatment is not withdrawal of care

10. Pediatric Palliative Care C C E E N N L L E E Ethical Issues in Palliative Care (cont.) Withholding/withdrawing of medical interventions (cont.)

11. Pediatric Palliative Care C C E E N N L L E E Ethical Issues in Palliative Care (cont.) Do Not Resuscitation (DNR) Allow Natural Death (AND) Medical Futility

12. Pediatric Palliative Care C C E E N N L L E E Ethical Issues in Palliative Care (cont.) Assisted suicide Euthanasia Darr, 2007; Ersek, 2005

13. Pediatric Palliative Care C C E E N N L L E E Principle of Double Effect An ethically permissible effect can be allowed, even if the ethically undesirable one will inevitably follow. Jonsen et al., 2010

14. Pediatric Palliative Care C C E E N N L L E E Issues of Justice in Palliative Care Provision of quality palliative care Costs of palliative care

15. Pediatric Palliative Care C C E E N N L L E E Research In Pediatric Care Is research appropriate? Informed consent National Commission for Protection of Human Subjects

16. Pediatric Palliative Care C C E E N N L L E E Facilitating Ethical and Legal Practice The 4 Box Method Quality of Life Patient Preferences Medical Indications Contextual Features Jonsen et al., 2010

17. Pediatric Palliative Care C C E E N N L L E E Medical Indications Indications for and against the intervention Reflect the goals of care Common ethical dilemmas

18. Pediatric Palliative Care C C E E N N L L E E Child and Family Preferences Principle of respect for persons  Autonomy, privacy, veracity Assess child/family understanding

19. Pediatric Palliative Care C C E E N N L L E E Advance Care Planning Process of decision-making and communicating about goals of care Nurses role in assessing and interpreting wishes for care POLST Hinds et al., 2010

20. Pediatric Palliative Care C C E E N N L L E E Advance Care Planning (cont.) Decreases chance of conflict An ongoing, dynamic process Cultural, ethnic and age related differences

21. Pediatric Palliative Care C C E E N N L L E E Advance Care Planning (cont.) Advance Directives—Written method for child and family to plan and communicate choices Less common in pediatrics State statutes differ My Wishes

22. Pediatric Palliative Care C C E E N N L L E E Advance Care Planning (cont.) Child Life Specialists Social Workers Hospices

23. Pediatric Palliative Care C C E E N N L L E E Authority of Parents Children are deemed legally capable of consent at age 18 Challenge of determining relevance and weight of parental and patient preferences Jonsen et al., 2010

24. Pediatric Palliative Care C C E E N N L L E E Standard for Parental Preferences Parents as moral and legal agents Parents evaluation of treatment efficacy or futility Instances of parent and physician conflict Jonsen et al., 2010

25. Pediatric Palliative Care C C E E N N L L E E Quality of Life (QOL) Evaluation of prior QOL Expected QOL with and without treatment Common ethical dilemmas addressing QOL Jonsen et al., 2010

26. Pediatric Palliative Care C C E E N N L L E E Contextual Features Social, legal, economic and institutional circumstances Common ethical dilemmas Jonsen et al., 2010

27. Pediatric Palliative Care C C E E N N L L E E Managing Disagreement Parent – child conflict Minors Legal issues, etc. Field & Behrman, 2003

28. Pediatric Palliative Care C C E E N N L L E E Managing Disagreement (cont.) Parent – parent conflict Parent – physician conflict Field & Behrman, 2003

29. Pediatric Palliative Care C C E E N N L L E E Parental Insistence on Treatment

30. Pediatric Palliative Care C C E E N N L L E E Organizational Ethics & Legal Practices Organizational ethics Ethics committees and consultation  Education  Policy development  Case consultation

31. Pediatric Palliative Care C C E E N N L L E E Conclusion Engage in a process of ethical discernment Apply principles of ethics Use ethical process to seek balance in decision-making Advocate for children and families

32. Pediatric Palliative Care C C E E N N L L E E Little Sister