Embracing the Elephant in the Room: Strategies for Dealing with Ethical Issues at the End of Life

1. Embracing the Elephant in the Room: Strategies for Dealing with Ethical Issues at the End of Life Debbie Lafond, DNP, PNP-BC, CPON, CHPPN February 5, 2014

2. Speaker Disclosure Statement Debbie Lafond, DNP, PNP-BC, CPON, CHPPN is a nurse practitioner at Children’s National Health System in Washington, DC. She has no relationships to disclose and no off-label use will be discussed.

3. Objectives • To identify and discuss four common ethical situations in caring for children at end of life • To discuss decision making and apply a tool for ethical decision making in a case study • To describe issues of child and parental preferences in advanced care planning and strategies to facilitate goals of care discussions • To identify and discuss issues of justice, conflict and research in palliative and end of life care for children with life-limiting illness

4. Ethics in Pediatric Palliative Care What ought to be Determining the best course of action Ethical issues are inevitable Minors/Assent Best interest standards Societal changes

5. Your Role in Addressing Ethical Issues Promoting family-centered care Respecting preferences Role models of clinical proficiency, integrity and compassion Balancing competing objectives

6. Standards of Professional Practice AMA Code of Ethics ANA Code of Ethics Nurse Practice Act Standards for professional organizations AAP APHON NCHPCO

7. Issues of Decision-Making and Communication Capacity Consent Assent Confidentiality

8. 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

9. Common Ethical Issues in Palliative Care • Decision making • Transitioning goals of care • Withholding or withdrawal of life sustaining interventions • Artificial fluid and nutrition • The doctrine of double effect • Religious or cultural objections • Declaring death, organ donation, and autopsy • Research

10. Spectrum of approaches to influencing health-related behavior Actively Discourage Actively Promote Prohibit Require Don’t Discuss Financial Disincentives Financial Incentives Provide negative information Provide positive information Wilfond, 2014

11. Wilfond, 2014

12. Facilitating Ethical and Legal Practice The 4 Box Method Medical Indications Quality of Life Contextual Features Patient Preferences Jonsen et al., 2010

13. Medical Indications Indications for and against the intervention Reflect the goals of care Common ethical dilemmas Jonsen et al., 2010

14. Child and Family Preferences Principle of respect for persons Autonomy, privacy, veracity Assess child/family understanding Jonsen et al., 2010

15. Quality of Life (QOL) Evaluation of prior QOL Expected QOL with and without treatment Common ethical dilemmas addressing QOL Jonsen et al., 2010

16. Contextual Features Social, legal, economic and institutional circumstances Common ethical dilemmas Jonsen et al., 2010

17. Julie’s Story

18. Case Study - Julie’s Story • 16 year old young woman with an Anaplastic Astrocytoma diagnosed at the age of 9 years of age • Received standard therapy with craniotomy (Gross total resection), Temozolomide during and after focal radiation therapy • Recurrence at age 12 – Craniotomy (Gross total resection), High dose chemotherapy with autologous stem cell transplant • - High morbidity with lengthy hospitalizations and extended PICU stays • - Intubation and ventilation → BiPAP • Recurrence at age 14 years – Craniotomy (Gross total resection), Re-irradiation therapy • Progression at age 15 – Enrolled on Phase I clinical trial → Progression after 4 months • Enrolled on 2nd Phase I clinical trial → Progression after 2 cycles • Progression at age 16 – Julie makes decision for no further therapy

19. Julie’s Case – The Ethical Issues Julie and parents have a strained relationship that pre-dated recent recurrences Parents insist that curative intent therapy be continued - Parents have a deep Catholic faith and use this as a basis for decisions Julie has two siblings: - an older sister (Susie – age 20) and a younger brother (Jonathan – age 13) - Susie gets along well with her parents and is Julie’s confidant - Jonathan is a quiet and introspective young man who rarely comes to the hospital Julie has been approached several times to discuss her wishes and goals of care but declines to discuss - Julie states empathically to APN that she does NOT want her parents to make her decisions as they will do anything to keep her alive - When pushed, Julie finally states she wants Susie to be her surrogate decision maker

20. Ethical Issue #1 – Decision Making • Who is making the decisions? • Parents/Guardian • Other surrogate • Adolescent or young adult • Child • Others involved

21. Ethical Issue # 2 – Goals of Care Prolongation of life Curative intent Acute therapeutic care Life sustaining treatments (LST) What about cases of uncertainty Futility Jonsen et al., 2010; Prince-Paul & Daly, 2010

22. Goals of care in Pediatric Oncology Cure Prolong life Prolong life Comfort Morbidity High Moderate Mild Minimal Psychological attitude Win Fight Live with it Embrace Tumor effect Eradicate Response Arrest growth None Hope Hope Hope Hope Baker, 2013

23. Ethical Issue # 2 – Goals of Care Do Not Resuscitation (DNR) Allow Natural Death (AND) Medical Futility Texas law – unilateral DNR decisions?

24. Ethical Issue # 2 – Goals of Care Assisted death Euthanasia

25. Ethical Issue # 3 – Withholding/Withdrawal Withholding/withdrawing of medical interventions Balancing benefits and burdens Withdrawal of treatment is NOT withdrawal of care

26. Ethical Issue # 4 – Artificial Fluids and Nutrition • Controversial • Interpretations in context of parental, religious and medical beliefs • Decisions may be impacted by: • awareness of hunger • ability to tolerate enteral feeds • opinions about prolonging the dying process

27. Ethical Issue # 5 - Principle of Double Effect An ethically permissible effect can be allowed, even if the ethically undesirable one will inevitably follow. Jonsen et al., 2010

28. Ethical Issue # 6 – Religion and Culture • Role of the spiritual leader in decision making • Balancing hope • Respecting rituals • Managing conflict • Medical obligations for treatment • Parental rights versus rights of the child who may or may not embrace same religious or cultural beliefs

29. Ethical Issue # 7 – Death, organ donation, and autopsy • Neurologic criteria • Cardiac criteria • Who should discuss organ donation? • When to discuss autopsy?

30. Issues of Justice in Palliative Care Provision of quality palliative care Costs of palliative care

31. Research In Pediatric Care Is research appropriate? Informed consent National Commission for Protection of Human Subjects

32. 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

33. 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

34. Managing Disagreement Parent – child conflict Minors Legal issues, etc.

35. Managing Disagreement (cont.) Parent – parent conflict Parent – physician conflict

36. Organizational Ethics & Legal Practices Organizational ethics Ethics committees and consultation Education Policy development Case consultation

37. Back to Julie…

38. Understand their Experience Impact of illness on patient and family life Perception of suffering informs decision making Quality of life is a greater factor in decision making as the illness advances Values, fears, and hopes influence decision making Uncertainty about the future is a great source of distress Prompt “How has being sick been for your child and your family?” “What are the most difficult things you and your family have had to endure during this time?” Baker, 2013

39. Understand Values Values Personal beliefs that people consider important, and to which they are emotionally attached Subjective, evolve over time as a result of personal experiences Give meaning to a person’s life May dictate care preferences Prompt “How do you define ‘Being a Good Parent’ to your child?” “How can we as a staff help you accomplish this?” “Given your understanding of this new recurrence, what is most important for you and your family?” Baker, 2013

40. Understand Hope Hope Quality that sustains the person in the presence of uncertainty A response to severe distress that facilitates adaptation to a situation that can not be controlled A desire of some good, accompanied with an expectation of obtaining it, or a belief that it is obtainable Presupposes an accurate assessment and acknowledgment of the reality of the situation May dictate care preferences Prompt “What are your hopes for your child and family?” “What else are you hoping for?” Baker, 2013

41. 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

42. The Elephant in the Room There’s an elephant in the room. It’s large and squatting, so it’s hard to get round it. Yet we squeeze by with, “How are you?” and “I’m fine,” And a thousand other forms of trivial chatter. We talk about the weather. We talk about work. We talk about everything else, except that elephant in the room. There’s an elephant in the room. We all know it’s there. We’re thinking about the elephant as we talk together. It’s constantly on our minds. For, you see, it is a very large elephant. It has hurt us all.

43. But we don’t talk about the elephant in the room. Oh, please say his (her) name. Oh, please, say his (her) name again. Oh please, talk about the elephant in the room. For if we talk about his (her) death, Perhaps we can talk about his (her) life. Can I say his (her) name to you and not have you look away? For if I cannot, then you are leaving me……… alone…….. in a room….. With an elephant….. Terry Kettering

44. References • Basu, RK. (2013). End-of-life care in pediatrics: ethics, controversies, and optimizing the quality of death. Pediatric Clinics of North America. 60, 725-739. • Clark JD & Dudzinski DM. (2013). The culture of dysthanasia: attempting CPR in terminally ill children. Pediatrics. 131(3), 572-580. • Field MJ, Behrman RE eds for the Institute of Medicine Committee on Palliative and End of Life care for Children and Their Families. (2003). When children die: improving palliative care and end of life care for children and their families. Washington, DC: National Academies Press. • Guedert JM & Grossman S. (2012). Ethical problems in pediatrics: what does the setting of care and education show us? BMC Medical Ethics. 13(2), 1-9. • Rushton, CH. (2004). Ethics and palliative care in pediatrics. American Journal of Nursing. 104(4), 54-63. • Sharman M, Meert KL, & Sarnaik AP. (2005). What influences parents’ decisions to limit or withdraw life support? Pediatric Critical Care Medicine. 6(5), 513-518. • Wainwright P & Gallagher A. (2007). Ethical aspects of withdrawing and withholding treatment. Nursing Standard. 21(33), 46-50.