1. ETHICS & DECISION-MAKING I. Definition of Ethics Ethics – The study of a system of decision-making based on moral Principals Morality-traditions of belief about right/wrong human conduct. Values – differences

2. ETHICS & DECISION-MAKING “Ethics brings structure & order to the decision-making process about our responsibilities for patient care and institutional management” Larry McCullough, PhD.

3. ETHICS & DECISION-MAKING Ethics should lead the Law Main discipline of Ethics is to follow the arguments where they lead us

4. ETHICS & DECISION-MAKING “ Medicine is the science of uncertainty and the art of probability” -W.Osler, M.D.

5. ETHICS & DECISION-MAKING Families, Doctors, Nurses,Health care team members No simple algorithms to follow We have fiduciary obligations to our patients

6. ETHICS & DECISION-MAKING Tools for Ethical Analysis Clarity Consistency Coherence Clinical Applicability Clinical Adequacy

7. ETHICS & DECISION-MAKING II.Principles Do good and Do no harm--Beneficence (Obligation as foundations of social morality) 1. One should not inflict harm 2. One should prevent harm 3. One should remove harm 4. One should promote good

8. ETHICS & DECISION-MAKING Principles Justice – Persons should be treated equally Many theories of justice Respect for Autonomy – to allow person to act for themselves Responsibility for self and family This means that the person understands Consent Disclosure of risk/benefits/complications

9. ETHICS & DECISION-MAKING III.Approaches to Care Wait until certainty 1. Treatment started on every infant thought to have a chance 2. Collect all information before making decision – Decision to err on side of maintaining life

10. ETHICS & DECISION-MAKING 3. Aggressive approach in accordance with society that values individual(ism) 4. Price to pay may have some patients with severe handicaps to salvage that one patient.

11. ETHICS & DECISION-MAKING Statistical Approach 1. Categorizes patients into groups which would benefit from care 2. Goal is to avoid creating severely impaired infants even at cost of those who might have been normal

12. ETHICS & DECISION-MAKING Individualized Approach 1. Initiate care on infants who have a chance 2. Deciding as soon as possible if continuing is in best interest of infant. 3. Decisions made before all information in 4. Problem – What degree of certainty is necessary?

13. ETHICS & DECISION-MAKING Responsibility – Accountability Process should be consistent One needs to ethically justify one’s decisions

14. ETHICS & DECISION-MAKING The technology is imperative - 1. Availability of technology 2. Does it mean we have to use it?

15. ETHICS & DECISION MAKING “Tyranny of the Normal” 1. Only acceptable outcome is normal (subjective & varies from person to person) 2. Worry about unrealistic expectations 3. Need to understand family value systems

16. ETHICS & DECISION-MAKING IV. Principal of Best Interests 1. Patient can not speak for self. 2. Parents have responsibility for decision-making. Who are we treating – the patient or the family?

17. ETHICS & DECISION MAKING Certainly want: 1. Relief of suffering 2. Preservation or restoration of function 3. Quality of life – (subjective)

18. ETHICS & DECISION-MAKING Outcome Anecdotal experiences both positive and negative How many times have we been wrong?

19. ETHICS & DECISION-MAKING IV. Principal of Proportionality Treatment should lead to greater benefit than burden. One needs to agree on expectations 1. Curing the patients 2. Restoring patient to reasonable quality of life 3. Minimizing pain & suffering

20. ETHICS & DECISION-MAKING V. Who Decides? Decision-making Team 1. Physicians 2. Parents & Family 3. Other members of healthcare team

21. ETHICS & DECISION-MAKING Today there is increased respect for patient autonomy 1. Role of parents in decision-making is increased 2. We should not be afraid to think out-loud a. This closes the gap between physician/parent. b. Demonstrate the trial & error nature of treatment. c. Parents need time to process information

22. ETHICS & DECISION-MAKING Rationing-using limited resources wisely Needs Ethical Impact Statement Needs to meet rigorous standards Scientific Moral Economic

23. ETHICS & DECISION-MAKING Summary – Very Important 1. Honest decisions with patients and family early 2. Awareness of power of decisions made each hour 3. Responsibility of thinking 4. Justification of thought

24. ETHICS & DECISION-MAKING Summary – Very Important 5. Respect for life 6. An acceptable decision may mean no intervention 7. Physician needs skill to help families explore their values 8. Cannot leave family alone in decision-making process 9. Decisions should be difficult

25. Tools for Ethical Analysis Clarity Consistency Coherence Clinical Applicability Clinical Adequacy