Ethical Dilemmas in Paediatrics

1. Ethical Dilemmas inPaediatrics Prof Sharon KlingDept Paediatrics & Child Health Tygerberg Children’s Hospital & Stellenbosch University

2. Overview of lecture • Ethics and ethical theories • The four principles of medical ethics • A framework for decision making • Case studies • Conclusion

3. What is Ethics? • “Ethics is the study of morality – careful & systematic reflection on & analysis of moral decisions & behaviour, whether past, present or future.” • “Morality is the value dimension of human decision-making and behaviour.” World Medical Association Medical Ethics Manual 2009

4. Ethics and morality • Morality: what people in fact do • Ethics: what people think they should do and how this is reflectively and systematically motivated Van Niekerk AA Medical Ethics Law & Human Rights 2010

5. Ethics • What should we do? • What is right? • On what basis can we choose between different courses of action?

6. Factors influencing ethical decision-making • Own belief systems & values • Common sense • Science • Laws • Professional codes & guidelines • Patient / Family preferences • Theories & Principles of Ethics

7. So, how do we approach ethical decision making? • Action guides: moral or ethics theories • Conceptual framework with rules

8. Theories of moral reasoning • Utilitarianism • Kantianism /deontology • Virtue ethics • Individual Liberalism • Communitarianism • Ethics of Care • Case based Ethics • Principle based Ethics • Best result, for majority, in long run • Rational, universal rules, do your duty • What would the ‘good’ person do? • Human rights • Common good, ‘connectedness’ • Duty to care – “Good Samaritan” • Use information, past experience • Autonomy, beneficence, non-maleficence, justice Professor Willie Pienaar

9. 3 well known ethical theories • Utilitarianism • Deontology / Kantianism • Virtue (character) ethics • Best possible outcome for the majority; the end justifies the means (e.g. atomic bomb) • Duty-based: Strict rules; act in such a way as to treat people as ends and never as means (e.g. never lie) • What would the good doctoror person do?

10. The four principles approach to biomedical ethics:Action guides with guidelines Beauchamp & Childress 2001

11. The Four Principles • Beneficence • Non-maleficence • Respect for autonomy • Justice • Respect for autonomy • Beneficence • Non-maleficence • Justice Beauchamp & Childress 2001

12. Respect for autonomy • Autonomy = “self-rule” • Autonomous people should be able to take control of their lives in accordance with their core values • Person should always be treated as an end and not a means to an end

13. Respect for autonomy 2 • Patient – doctor confidentiality • Tell the truth • Informed consent / decision-making • Western view: liberal-individual • Traditional African context: community involvement

14. Beneficence • In moral problem situations, the first concern ought to be the benefit and interests of the patient • Implies • Provide best available treatment • Acquire knowledge and competence

15. Non-maleficence • Do no harm (the original Hippocratic view of medical ethics) • Do not kill • Avoid therapies that do not provide benefit • Do not cause pain or suffering to others

16. Justice • Respect for people’s rights (rights-based justice) • Respect for morally accepted laws (legal justice) • Fair distribution of limited resources (distributive justice)

17. Allocation of Health Care Resources Health budget Social budget Health care budget

18. Using the four principles • Each principle carries equal weight • If conflict occurs, the principles must be balanced and weighed against the others • E.g., beneficence may conflict with justice - expensive treatment for few vs vaccination for many

19. Decision making and Best Interests

20. Standards for decision making • Subjective standard • Statements made by person • Substituted judgment standard • Apply person’s own values, beliefs, preferences • Best interests standard • Objective weighing of the benefits and burdens of proposed treatment alternatives

21. The Concept of Best Interests • “The highest net benefit among the available options that apply to any situation in which a decision has to be made regarding the health of the patient.” • “The best interests standard protects another’s well-being by assessing risks and benefits of various treatments and alternatives to treatment, by considering pain and suffering, and by evaluating restoration or loss of functioning.” Beauchamp & Childress 2001

22. An approach to ethical decision-making • Identify the ethical dilemma • Establish all the necessary information • Analyse the information obtained • Formulate possible solutions, make recommendations, take action • In institutions, implement necessary policies Bereza E. Curriculum in medical ethics

23. Illustrative Cases

24. Case 1: Ashley X • Story in Los Angeles Times 3 January 2007 • Ashley X, aged 9 years (born 1997), from Seattle • Born with static encephalopathy – unable to walk, talk, eat, sit, roll over • Developmentally at 3 month level, no prospect of improvement • In 2004, Ashley’s parents and doctors at Seattle Children’s Hospital devised the “Ashley Treatment”

28. The Ashley Treatment 2 • The “Ashley Treatment”: • High dose oestrogen therapy to stunt her growth • Hysterectomy to “prevent menstrual discomfort” • Removal of breast buds to limit breast growth • To “improve our daughter’s quality of life and not to convenience her caregivers” Hastings Center Report Mar/Apr 2007

29. The Ashley Treatment: Parents’ Arguments • Keeping Ashley small will make it easier to carry her around and care for her • Surgery will allow her to avoid menstrual cycle, eliminate possibility of pregnancy and uterine cancer, and avoid large breasts that may cause discomfort and avoid breast cancer • “The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” (Dvorsky) Hastings Center Report Mar/Apr 2007

30. The Ashley Treatment: Analysis • Were these treatments in Ashley’sbest interests? • Was she treated with dignity and respect? • Would these interventions improve her quality of life? Hastings Center Report Mar/Apr 2007

31. Case 2: Samantha • Samantha, aged 14 years, gave birthto a baby. She had a retained placenta and lost a great deal of blood due to this and cervical and vaginal lacerations, and the medical team advised a blood transfusion. Her mother refused consent for transfusion as the family were Jehovah’s Witnesses. Samantha became oxygen dependent and was thought to be in early cardiac failure as a result of anaemia with an Hb of 3 g/dl.

32. Case 2 cont’d • When asked how she felt about the blood transfusion, Samantha said she does not know and the medical team must speak to her mother. Her mother said that Samantha had not yet been inaugurated into the JW faith, but that she told her that she did not want to have a blood transfusion. • Which principles are in conflict? • What should the medical team do?

33. Case 3: Baby D • Baby D, NVD at 35 weeks (maternal UTI) • Weak, hypotonic from birth, initially thought to be HIE; required CPAP few weeks • Dx: X-linked myotubularmyopathy • Problems: • Unable to swallow + reflux: naso-duodenal tube feeding • Oxygen dependent • Needs regular suctioning • Parents refuse any surgery and do not want to take him home • Now medical funds also exhausted

34. Further information: Medical • Myotubularmyopathy: • Severe muscle weakness, unable to swallow, rarely able to sit, will never walk • Cognitively normal • Usually die from respiratory failure or pneumonia, usually survive up to approximately 1 year • Ideal management would entail a tracheostomy, gastrostomy and anti-reflux procedure, and home care

35. Further information: Social • Parents in early 30’s • First child, previous miscarriage • No family support in Cape Town, both work • Father always distant; Mother has started to withdraw, limited visiting time • Marriage faltering, child blamed • Parents have requested Dr S to stop treatment (oxygen)

36. Ethical dilemma • What treatment should Baby D receive? Can therapy be withheld from him? What is in Baby D’s best interests? (beneficence / non-maleficence) vs Parental autonomy and Distributive justice

37. Baby D • Which therapy can be withheld from Baby D? And on what grounds? • What should Dr S do?

38. When may life-saving support be withdrawn? • Brain death • Vegetative state • No chance – no hope of survival; treatment is futile; it only delays death — if done knowingly it constitutes assault • No purpose – survival possible, but degree of impairment will make life unbearable • Unbearable – irreversible illness; child or family feel further treatment unbearable Royal College of Paediatrics & Child Health 2000

39. Recommendations • Involve social worker to counsel parents and explore alternative placement of baby • Try to persuade parents that gastrostomy will be in D’s best interests • Continue oxygen and feeding • Withhold life-sustaining therapy such as mechanical ventilation • Discussion re antibiotics for pneumonia

40. Case 4 • Hannah Jones, aged 13 years, from Herefordshire in the UK, has a cardiomyopathy following treatment for leukaemia since the age of 4 years • Only chance of survival is a heart transplant • Hannah says she has had enough of hospitals, and wants to spend the rest of her life at home and not in hospital, and refuses surgery

41. “I have been in hospital too much – I’ve had too much trauma. I don’t want this, and it’s my choice not to have it.” • Her parents support her decision. • The hospital tried to get a court order to force her to have a heart transplant. • Is this appropriate?

42. Case 5: Mary • Mary, aged 14 years, has been Dr X’s patient for many years • She consults him because she is sexually active and wants him to prescribe contraceptives for her, but she asks him not to tell her mother. • What are Dr X’s options? • What should Dr X do?

43. Summary 1 • Principles of medical ethics: • Respect for autonomy • Beneficence • Non-maleficence • Justice

44. Summary 2 • Identify the ethical dilemma • Establish all the necessary information • Analyse the information obtained • Formulate possible solutions, make recommendations, take action

45. An ethics of responsibility • The four principles serve as a point of departure and reference, but need to be weighed and balanced • In the end we must come to a decision, which may not be perfect • But we must be able to supply our reasons and motivate them clearly and coherently • Therefore all of us must become ethically sensitised and take responsibility for our decisions Van Niekerk A 2004

46. Thank You!