1. ETHICS IN PAEDIATRIC PRACTICE BEDE C. IBE PROFESSOR OF PAEDIATRICS COLLEGE OF MEDICINE, UNEC

2. What is Ethics? Moral Science -That branch of Philosophy which studies the principles of right or wrong in human conduct. -Moral principles which determine the rightness or wrongness of particular acts or activities. -Two components of ethics -discern right from wrong -commitment to do the right -Ethics not synonymous with Values -Ethics refer to how a moral person should behave -Values refer to beliefs and attitudes that determine behaviour -Ethics have universal application -Values can be said to be personal or refer to a group. Not all value systems are ethical in conduct (Note: Racial and/or Gender biases)

3. Human Rights Human Rights – Universally agreed set of non-negotiable standards and obligations Founded on the principle of respect for the dignity and worth of the human person regardless of race, colour, gender, language, religion, opinions, origin, wealth, birth status or ability. Governments and peoples have obligation to promote & not to infringe on these rights

4. UN Convention on the Rights of the Child 1989, World Leaders appreciated that children required special protection apart from the universally accepted “Human Rights” Adopted the UN Convention on the Rights of the Child Rights relate to right to life & survival, right to develop to fullest potential, right to protection from harmful influences, from abuse & exploitation and right to participation in family, cultural & social life. Convention has 4 Core Principles Non-discrimination Devotion to best interests of the child Right to life, survival and development Respect for the views of the child Convention protects children by setting- Standards in health care, education, legal, civil and social services

5. Ethics and the Health of the Child Government & General Society Ensure protection of the rights of the child Provide the right environment for the child to exercise those rights including right to health care In particular, ensure availability of appropriate health services Caregiver (Parents and/or Guardian) Expected to always act in the “best interests of the child” Exercise appropriate health-seeking behaviour Ensure the child gets medical care as and when needed Care-provider (Physician and others health care providers) Must ensure that health care given are medically appropriate, conform to accepted ethical standards and are legal.

6. Making Medical Decisions In the recent past Authority to make medical decisions used to lie squarely with the physician. “The doctor knows best” Society now recognizes That patients or their surrogates, in consultation with their physician, have rights to decide on their medical care including rights to accept or reject physician’s recommendations Medical decision making power or authority Should be a shared responsibility in an equal partnership of physician-patient or physician-surrogate relationship There should be consent to medical care (Note: In recent times, medical practice has been subjected to external scrutiny and questions are being asked about standards.)

7. Consent to Medical Care Patients have rights to- Know about their health and ailments Know the available diagnostic and treatment options Know the possible risks and benefits Choose from among the available alternatives Refuse medical treatment To exercise these rights, patient must be able and competent to make rational (right) decisions and this depends on Age - there is a legal age of consent Medical condition and/or State of the mind of patient The concept of “Informed Consent” Patient must know what he/she is deciding on Only patients with decisional capacity and legal empowerment can give informed consent.

8. Informed Consent Four key elements of Informed Consent Provision of information Includes explanations in understandable language all about the ailment, diagnosis, treatment, risks, alternatives and also risk of no treatment. Assessment of patient’s understanding of given information Assessment of the capacity of patient or surrogate to make the right decisions Assurance that patient or surrogate has freedom to choose Informed consent and the child Doctrine of informed consent have limited DIRECT application in paediatrics Consent usually by proxy – parents or guardians. What parents or guardians give is, in effect, “informed permission”

9. Consent by Proxy Informed Permission Parents and legal guardians are believed to have moral authority or right to give consent on behalf of their children/wards The assumption is that they will always act in the best interest of the child Cases of child abuse, neglect and exploitation indicate This is not always true Religious, cultural, socio-economic and other considerations May colour decisions that may not be in the best interest of child Healthcare providers have legal and ethical obligations to their child-patients to provide good health care Irrespective of parental desires or consent (this implies that conflicts may arise b/w physician & caregiver)

10. Best Interests of the Child Who determines the best interests of the child Except for older children, best interests are determined by proxy (parents/legal guardians) (A person’s best interests are defined by complex interaction of physical, emotional and socio-economic factors. When best interests are determined by proxy, it is important to find out whose best interest are being served) Factors that may influence Caregiver Age/Experience, Religious beliefs and practices, Socio- cultural beliefs and practices, Financial considerations, Medical condition of child, Others. Factors that may influence Physician Overall competence (Age & experience of physician), Religious beliefs and values, Financial considerations, Others.

11. Assent to Medical care by Minor Child assent to medical care Children, as minors, do not give consent, but depending on the child’s age and level of development, his/her assent to medical procedure is very valuable. Involving a child in the decision making process engenders trust and better physician-patient relationship. Key elements for child assent Help patient achieve appropriate awareness of his/her condition Tell patient what to expect with respect to diagnostic tests and medications Make clinical assessment of patient’s understanding and factors influencing responses Solicit expression of willingness to accept treatment plans

12. Communication and Ethics-1 Honest, Open Communication Very essential, engenders trust. Leads to less conflicts and misunderstanding Time invested in good communication is well spent Confidentiality Patient must be reassured that his/her medical history is safe with the physician. Only under very extraneous circumstances can this be broken even for adolescents Information about the health condition If facts are clear, tell the patient If uncertain, obtain second opinion and/or refer.

13. Communication and Ethics-2 Barriers to communication Language and Cultural differences Interpreters can distort information Child: age, level of development (education) Parent (caregiver): age, educational level Illness per se: Its effects – physical, emotional, psycho- social – on both patient and/or caregiver Communicating “Bad” news What and how much to tell; How and to Whom to tell; When to tell. These can present difficulties. Experience is required and there maybe need to seek help from elders in the family, confidants of the caregiver including religious leaders (pastors, priests, imams and others.

14. Common Areas of Conflicts Adolescent Sexuality Teenage pregnancy, Abortion Should adolescents make decisions as far as their sexual lives are concerned? Contraception? Etc How far can parents go in respect of their children’s sexual lives? Clinical Research Ethical clearance must be obtained from relevant authorities before commencement of any research especially when human persons will be used. Participation in clinical research should be voluntary Refusal of consent for essential medical procedures The right to refuse medical procedures, even when considered essential, should always be respected

15. Strategies for Conflict Resolution Consultation and more Consultation Most conflicts stem from lack of adequate information Keep the communication open- Involve other family members if necessary Use more senior and experienced persons Do not rush to discharge against medical advice Legal adjudication should always be a last resort If child’s life is in danger, you must act The Hospital Administrator can act for the State

16. Ethics Committees Institutional Ethics Committees Advices on ethical issues that arise within the institutional services Issues ethical clearance on research projects Medical and Dental Council Ethics Committee Provides ethical guidance to practitioners Advices Council on ethical issues that come before it. Professional Associations Ethics Committees Some professional groups have ethical committees that assist members with ethical problems

17. SUMMARY Health care delivery is very much in the public eye Period of “Doctor knows best” is over Your therapeutic plan or management programme may be questioned and/or rejected. Be open with your patient Respect your patient’s views Always ask yourself “Am I guided by the best interests of my patient? Am I guided by best practice principles?” Remember – At least, DO NO HARM!