1. Ethical Dilemmas in Paediatrics
Prof Sharon Kling Dept 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. World Medical Association Medical Ethics Manual 2009
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. Van Niekerk AA Medical Ethics Law & Human Rights 2010
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
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 doctor or person do?
Utilitarianism
Deontology / Kantianism
Virtue (character) ethics

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. Hastings Center Report Mar/Apr 2007
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’s best 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 birth to 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 myotubular myopathy
Problems: Age 6 months
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
Myotubular myopathy:
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. What is in Baby D’s best interests? (beneficence / non-maleficence)
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 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!