Teaching MCH Ethics

1. Teaching MCH Ethics Kay M. Perrin, PhD, MPH, RN University of South Florida College of Public Health APHA, November 2004

2. TEACHING MCH ETHICS • MCH Competencies • Historical background as a foundation of medical ethics • Major ethical principles • Development of ethical morals and values • MCH case studies • Discussion and reflections

3. MCH COMPETENCIES MCH Professionals should have knowledge and understanding of: • The philosophy, values, and social justice concepts associated with public health practices in MCH • The principles and issues involved in the ethical conduct of practice and research within MCH populations, organizations, agencies including data collection, management, analysis and dissemination

4. The philosophical concepts and rationale underlying the delivery of family-centered, comprehensive, community-based and culturally competent MCH programs including community assets

5. MCH Professional should be able to demonstrate the following skills: • Ethical conduct in practice, program management, research, and data collection and storage • Promotion of cultural competence concepts within diverse MCH settings • Ability to build partnerships to foster community empowerment, reciprocal learning and involvement in design, implementation, and research aspects of MCH programs

6. HISTORICAL BACKGROUND Nuremberg Code of 1947 Helsinki Declaration of 1964 1974 U.S. Federal Regulations: “National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research”

7. 1920: Permission to Destroy Life Unworthy of Life Doctors should be allowed to kill: • Terminally ill or mortally wounded • “incurable idiots” whose lives are viewed as pointless or valueless with an emotional or economic burden on family • “Unconscious” who would waken to nameless suffering

8. 1924: Carrie Buck • Poor, powerless, daughter of a prostitute • Pregnant out-of-wedlock by foster father • Mother in jail; baby not “quiet normal” • “3 generations of idiots is enough” (Justice Oliver Wendell Holmes) • In U.S. 60,000 people legally, involuntarily sterilized between 1907 and 1960

9. 1980s: Dehydrating Cognitively Disabled Persons • 1st: Dehumanized persons • 2nd: Gave moral permission to families and doctors to withdraw basic sustenance • 3rd: Urged courts to make dehydration a legal “right to die” • Today: Causing death by dehydration is legal in all 50 states

10. MAJOR ETHICAL PRINCIPLES • Beneficence • Justice • Utilitarianism • Confidentiality • Autonomy / Informed Consent

11. Beneficence • Do not harm • Maximize possible benefits • Minimize possible harm • Direct benefit to subject • Overall benefits to society

12. Justice • Fair distribution of benefits • Equal shares • Equal individual need • Equal individual effort • Equal societal contribution • Equal merit

13. Utilitarianism • Acknowledges that the pains of some may have to be accepted in particular situations in which the best realization of value for everyone affected makes them unavoidable • Greatest good for the greatest number

14. Confidentiality • The importance of the patient being able to trust their health care provider to not reveal personnel and private information without the person’s permission • Goal: Accurate diagnosis depend on a complete history • Goal: Society benefits, such as with reported diseases, by protecting others

15. Justification of confidentiality breach • A threat to the patient • A threat to other unidentified persons • A threat to some other specific individual • EX: Child abuse and specified contagious diseases • When benefits from the breach outweigh the “wrong” to the patient

16. AIDS Amebiases Animal bites Anithrax Arbovirals Botulism Brucellosis Cholera Coccidiodomycosis Cryptosporiasis Dengue fever Diptherea Ehrlichiosis Encephalitis Epsilon toxin Giardiasis Glanders Conococcal infection Heamophilus influenza Hepatitis Isosporiasis Kawasaki syndrome Legionellosis Leporsy Leptospirosis Listeriosis Lyme disease Malaria Measles (rubeola) Meningitis, infectious Meningococcal Microsporidiosis Mumps Mycobacteriosis Pertussis Pesticide related illness Plague Pneumonia in a health care worker Polionyelitis Psittacosis Q fever Rabies Ricin toxin Rocky Mountain spotted fever Salmonellosis Septicemia in newborns SARS Shigellosis Smallpox Staphlococcal B Strep A and B Syphilis Tetanus Trichinosis Tuberculosis Tularemia Typhyoid fever Varicella – fatal cases only Vibiosis Viral hemorrhagic fevers Yellow fever Yersiniosis* (Dept of Health, Maryland 2004) Reportable Diseases in Maryland

17. Autonomy • Freedom to make individual choices • Given adequate information By building on the definitions of these basic ethical principles, we are led into a discussion about informed consent…

18. Informed Consent A process involving discussion between a provider and a patient. It is not the “signing of a consent form.”

19. Elements of Informed Consent • Diagnosis • Nature of the proposed treatment • Purpose of the proposed treatment • Risks and side effects of the proposed treatment • Probability that the proposed treatment will succeed

20. Alternatives to the proposed treatment • Fore each alternative, discuss its risks and benefits • Consequences of “no treatment” should always be discussed

21. “Exceptions” to informed consent • Emergencies – if there is no time to get a person’s consent, but it is likely that they would have consented • Therapeutic Privilege – a provider’s determination that knowing the complete truth might harm the patient; rarely used • Incompetent Patients – since the patient cannot consent, one must find out who is authorized to consent on their behalf

22. Physician: Legal Standard of Informed Consent • As a legal standard, informed consent is imposed retrospectively • Courts are involved only after a malpractice suit is filed • Prospective review is not conducted, because such review would be intrusive into the professional relationship of physician and patient • Goal: patient’s well-being

23. Researcher: Legal Standard of Informed Consent • The researcher is subject to prospective and continuing review requirements, including explicit and detailed standards for the information disclosed • Goal: Gather evidence or data for testing a hypothesis with a goal of advancing scientific knowledge rather than benefiting the subject

24. Additional information for research protocols when obtaining informed consents • A description must be given of the confidentiality of research records and data • An explanation must be given of the availability or unavailability of compensation or treatment for injury

25. Identification must be made of whom to contact for answers regarding the conduct of the research and the subject’s rights as well as whom to contact in the event of an injury • An explanation must be given of the subject’s rights to refuse participation and to withdraw from the study

26. Information regarding currently unforeseeable risks • Reasons why an investigator might expel a subject from a study • Identification of additional costs to the subject incurred as a result of participation in the study • Consequences of the subject’s withdrawal from the study • Information about pertinent findings • Information about the number of subjects participating in the research

27. DEVELOPMENT OF ETHICAL MORALS AND VALUES • Good ethics begin with good facts • Ideally, discussing case studies results in: • Some narrowing of disagreements and differences • Some knowledge gained • It is not always easy to discern the right answer to an ethical problem, but it is often easy to identify a wrong answer • Bad facts, failure to consider alternatives, or inconsistent reasoning

28. MCH CASE STUDIES Four questions for each case study: • Uncertainty about the utility and safety of the research / technique / treatment • Moral uncertainty about the justifications for the research / technique / treatment • Conceptual uncertainty about the “patient it serves • Social uncertainty about its long-term effects

29. EXAMPLES OF MCH CASE STUDIES • Circumcision • Women in research – or not • Prenatal testing • Behavior of pregnant women • Designer babies • Abortion and embryo adoption • Conflicts of interest among pharmacists

30. Circumcision • March 1999 – AAP concluded that the health benefits of this practice do not justify routine circumcision • 1970 – AAP no medical indication • 1989 – AAP concluded potential benefits • If we allow this risk to children to meet the “cultural” or “religious” need of parents, how do we determine when other cultural needs should triumph? • Comparison of pediatric data with women’s health data = conflicting results

31. Women in research – or not? • Baltimore Longitudinal Study (started in 1958) no women for first 20 years • Physician's Health Study – 22,000 men and no women (Harvard Aspirin study) • 1982 Multiple Risk Factor Intervention Trial (Mr. FIT) – 13,000 men and no women • Harvard – caffeine and heart disease study – 45,000 men and no women • Framingham Study – longitudinal study with no women

32. Continued • 1908 – heart disease is one of the best-kept secrets of women’s health • 1964 – American Heart Assoc. first conference on women and heart disease • Title: Hearts and Husbands: The First Women’s Conference on Coronary Heart Disease – “How to Care for Your Man” • No discussion about self-care

33. Continued • 1950 – thalidomide and DES - meant that no woman between the ages of 15 and 50 could no longer participate in new drug research unless she had been surgically sterilized • However, researchers did not exclude men even though Proscar, a drug used to treat enlarged prostate glands, was found to cause birth defects; men sign a statement saying that they would use condoms • Implication: women have no control over their reproductive lives

34. Prenatal testing • Right of prospective parents to reproduce children with genetic anomalies vs. the moral duty not to “knowlingly” reproduce an affected child • The future person’s right to not be born with genetic anomalies outweighs the prospective parents’ right to give birth • The harm to the child, family and society-at-large have an impact on the moral acceptability of these decisions

35. Behavior of pregnant women • Increasingly, the fetus is seen as a medical patient in its own right – a patient whole quality of life can only be protected by recognizing its individual interests • When the woman’s behavior is seen has harmful, does society have a right to control her behavior?

36. Designer babies (gender selection) • PGD (Pre-implementation Genetic Diagnosis) allows physicians to screen embryos for a wide range of possible diseases as well as for gender. Suitable embryos can then be implanted, while the future parents may decide not to implant other embryos. These other embryos may be destroyed or given to other infertile couples, where they will be implanted in the woman and brought to term.

37. Abortion or embryo adoption • Ever since it became possible to freeze embryos as part of the process of assisting in reproduction, doctors and couples have faced a growing problem: What to do with the frozen embryos? • Save embryos for second attempt? • Donations akin to organ donations? • Legal screening as with adoptions? • Erosion of abortion laws if embryos are viewed the same as adoptions? • Sharing information with child later for medical purposes?

38. Conflicts of interest among pharmacists • Most pharmacists who work in retail pharmacies have a serious potential conflict of interest. On the one hand, they are professionals, expected to be knowledgeable about drugs and to dispense them in a responsible and ethical manner. On the other hand, their income depends on the sale of products. Before the FDA's OTC (Over-the-Counter) Drug Review drove most of the ineffective ingredients out of OTC drug products, few pharmacists protected customers from buying products that did not work. • Do MCH professionals ever profit (grants, data, tenure) at the expense of patients?

39. Issues related to research at universities • Universities being driven by research dollars rather than teaching evaluations • Relentless time and financial constraints to produce data for funding source • Teaching hospitals often represent a place where vulnerable populations with specific medical conditions are brought together in one location

40. Watchdog citizen group tracking unethical medical research CIRCARE: Citizens for Responsible Care and Research veracare@erols.com

41. DISCUSSION AND REFLECTION “We in the U.S. don’t have systemic atrocities, we have compartmentalized atrocities. But the intellectual underpinnings for the good of science; for the advancement of knowledge; for the benefit of society; for the national interest” (Biomedical ethicist at the Maryland School of Medicine)

42. Example: Baby Doe (U.S.) • Down’s syndrome and parents refused surgery; ordered doctors to withhold food and fluids thus dooming her to death • If a “normal” child were neglected to death, parents and doctors would be charged with child abuse and murder

43. Surgeon General Koop “The greatest protection that disabled newborns have in the U.S. is the concern on the part of the doctors who care for the newborns that someone is watching; considering the increasingly utilitarian state of medical ethics and the pressures placed on doctors by managed care companies to cut the costs of health care, that protection may be scant indeed.”

44. Peter Singer • “Infants have no moral right to live” • “Infanticide at the request of the parents is ethical so long as it toll promote the overall interests of the family and society” • “Instead of going forward and putting all our efforts into making the best of the situation, we can still say no, and start again from the beginning.” • Rethinking Life and Death: The Collapse of Our Traditional Ethics (his book)

45. What can we do to improve the value system in institutions? • More effort must be made to integrate values into the social fabric of the institution: supportive, compassionate, thoughtful. • Greater emphasis on learning and less on evaluation to decrease cheating and dishonesty. • Engage faculty and students in a series of discussion regarding the ethical foundations and core values of the professionalism

46. Conclusion • Public health cannot compromise on value systems • “Teaching values is particularly difficult when education has become a trade with lots of money involved” (Sheriff and Manopriya, 2000). • Students learn a professional value system as it is portrayed by the institution they attend and by the faculty attitudes towards each other and towards their profession.

47. Thank you Any comments?