Patient Relations: Professionalism, informed consent, and abortion MS-3 Case Based Series

1. Patient Relations:Professionalism, informed consent, and abortion MS-3 Case Based Series June 23, 2011

2. Objectives • Review ethical principles • Review principles of informed consent • Understand the role of confidentiality in patient care • Describe legal and ethical issues in the care of minors • Describe issues of justice relating to access to obstetric-gynecologic care • Recognize the role of physician as a leader advocate for women • Explain ethical dilemmas in obstetrics and gynecology • Cases

3. Review ethical principles • Autonomy • Beneficence • To promote the well-being of others • Non-maleficence • Justice – governs access to care and fair distribution of resources

4. Ethical principles as they apply to Ob/Gyn

5. Autonomy • The mother’s prerogative to make choices or take actions based on her beliefs and values even if these actions are harmful to herself or her fetus • Limited autonomy – the ability of adolescents to have autonomy only in the area of sexual and reproductive health, but in all other manners of life they are not autonomous?

6. Beneficence • Requires doctors to act in a way that is expected to reliably produce the greater balance of benefits over harms in the lives of others • Do the benefits outweigh the risks? • Must often be balanced with non-maleficence and autonomy • Example: should an OB/GYN comply with a patient’s request for a home birth if he/she knows that that the risks are greater for both mother and baby?

7. Justice • Implementation of universal screening for sexually transmitted diseases • Psychosocial screening should be provided to every new pregnant patient • Both these interventions ensure that all populations are reached and avoids selective screening

8. Review the principles of informed consent

9. Informed Consent - Background • Based on ethical and legal requirements • Legal foundations in statutes and case laws • May be available through state medical board • California: • www.medbd.ca.gov/publications/laws_guide.pdf • North Carolina • http://www.ncga.state.nc.us/enactedlegislation/statutes/pdf/bysection/chapter_90/gs_90-21.13.pdf

10. Informed Consent - Definition Patients to meaningfully participate in the decision making process Medical education of the patient is fundamental to the process. The basis of the informed consent process is to respect and promote the participant’s or patient’s autonomy, and to protect him or her from potential harm. The collaborative physician-patient relationship forms the foundation of the informed consent process.

11. Informed Consent Risks and benefits of the intervention and alternative treatments or procedures, as well as risks and benefits of not receiving or undergoing a treatment, should be explained in language that will facilitate patient comprehension.

12. Informed Consent A well designed ICF should promote the patient’s understanding and the voluntary nature of their participation in the treatment. Readability and comprehension of the informed consent form must be appropriate. Almost half of all U.S. adults read at or below 8th grade level but consent forms should be written at least three grade levels lower than the average educational level of the target population.

13. Confidentiality • Understand the role of confidentiality in patient care: • Patient-physician relationship • Legally binding: HIPPA • How do minors fit in?

14. Patient-Physician Relationship

15. Confidentiality

16. HIPPA • Health Insurance Portability and Accountability Act (1996) aims to: • Improve portability and continuity of health insurance coverage • Combat waste, fraud, and abuse in health care • Reduce costs and administrative burdens by standardizing the interchange of electronic data • Ensure protecting the privacy of Americans’ personal health records by protecting the security and confidentiality of health care information

17. Overview of Privacy Rule • Gives patients control over the use of their health information • Defines boundaries for the use/disclosure of health records • Establishes national-level standards • Helps to limit the use of PHI and minimizes chances of its inappropriate disclosure • Strictly investigates compliance-related issues and holds violators accountable • Supports the cause of disclosing PHI without individual consent for individual healthcare needs, public benefit and national interests

18. Minors • State and federal laws govern consent and confidentiality for minors • A legally-responsible person must always give consent for health care • Usually parent or legal guardian • Important EXCEPTIONS – especially in reproductive health care

19. Minors and Reproductive Health Care • Two things to consider: 1. The status of the minor • Married • Emancipated • A parent and <18 years old 2. The type of health care • Emergency care • Family Planning • STI testing and care • Pregnancy • Abortion • Mental health

20. Minors and Reproductive Health • In all states, minors can give consent for STI, pregnancy, and HIV/AIDS testing and care • In North Carolina, consent for abortion must be given by the minor and one parent or legal guardian, or grandparent if the minor has lived with him/her for the last 6 months • Judicial bypass possible • Exceptions for rape, incest, and medical emergency

21. Minors and HIPAA • A physician giving care based on a minor’s consent may not share information with the minors parent/legal guardian without the minor’s permission to do so • UNLESS: notification is essential for the life or health of the minor

22. What are situations where challenges may be met specifically in ob/gyn? • Assisted reproductive technology • Contraception • Emergency Contraception • Abortion • Sterilization of mentally challenged

23. Conscience • The private, constant, ethically attuned part of the human character. It operates as an internal sanction that comes into play through critical reflection about a certain action or inaction.

24. Patient interactions to consider • Caring for a patient who is: • An alleged crime suspect; an alleged or known abuser of children or women • Caring for patients who you don’t feel help themselves: • Alcoholics; non-compliant patients with chronic disease • Caring for pregnant patients who you don’t feel care about the wellbeing of their fetus • Caring for pregnant patients who want an abortion • Working with other physicians who you feel behave unethically

25. Sterilization for mentally challenged

26. Sterilization for mentally challenged • In early 1900s, 33 states adopted eugenics programs. • Most states abandoned the programs after WWII because too similar to Nazi Germany’s programs for racial purity. • However, NC eugenics program expanded in 1950s-60s until it was discontinued in 1975. • Approximately 7,600 people in NC had forced sterilization from 1929-1975. • Because of this legacy, it is now difficult to obtain sterilization for the mentally challenged in NC.

27. Sterilization for mentally challenged • At UNC Hospital, if a mentally ill or mentally retarded ward needs to undergo a medical procedure that would result in sterilization: • Ward’s guardian must petition a clerk of court for an order to permit the guardian to consent for the procedure. • Physician may perform procedure only if: • 1) Court order has been issued • 2) Copy of court order is placed in patient’s chart • 3) Guardian consents for the procedure • 4) Ward consents for the procedure (if he/she can comprehend the nature of the procedure and its consequences

28. Sterilization for mentally challenged • In addition, the petition must have: • Sworn statement from an NC psychiatrist/psychologist who has examined the ward as to whether the ward is able to comprehend the nature of the procedure and its consequences and provide an informed consent. • Sworn statement from an NC physician who has examined the ward that the procedure is medically necessary & not for sole purpose of sterilization or convenience/hygiene. • Name and address of physician who will perform the procedure.

29. Sterilization for mentally challenged • Example: • 12yo G0 with high-functioning autism and pervasive developmental disorder (possibly 2/2 known balanced translocation) presents with her mother. Patient recently had menarche and is having panic attacks because of a severe sensitivity to the odor of blood and tactile sensation of wearing a pad. Patient says that she does not want to have children. Mother is concerned because she is 54 years old, is in poor health (breast cancer), does not think her daughter could handle pregnancy/childbirth, and is afraid her daughter will pass on the balanced translocation. • Patient and her mother both request that the pt has a hysterectomy to stop menses and for sterilization.

30. Sterilization for mentally challenged • Example: • Is this an ethical request? • Does it matter that the patient’s guardian (her mother) is ill and concerned that after she dies, her daughter may have a more difficult time petitioning for a hysterectomy? • Would it make a difference if the patient was 12 or 20 years old if she is currently at her maximum developmental capacity? • Does the fact that she has a known inheritable genetic disease (balanced translocation) make a difference? • What are her options?

31. Abortion

32. Some background on abortion • In 2005 1.21 million women chose to have an abortion • 1/3 of all women will have had an abortion by age 45 • More than half (54%) or women who have an abortion report using contraception when they got pregnant

33. More abortion information • 58% of women say they would have liked to have had their abortion sooner • 53% of women having an abortion never had a previous one

34. North Carolina Medical Board The physician who does not want to mention abortion as a treatment option State and federal law lets a health provider with ethical or moral objections avoid participating in abortion. However, a provider’s withdrawal must not limit a patient’s options. To satisfy state law on informed consent and, if applicable, the federal family planning regulations, the physician must refer the patient to another provider who will counsel her on all options. http://www.ncmedboard.org/images/uploads/publications_uploads/no301.pdf

35. Conscientious refusal and reproductive medicine

36. Case 1 • Jane is 17 years old and is 10 weeks pregnant. She comes from a supportive working class family with strong ties to the anti-abortion movement. She has been accepted on an athletic scholarship to UNC and is due to start her first semester in two months. Her boyfriend wants them to get married and have the baby. She doesn’t know what to do and she is in your office crying. The abortion option: a values clarification guide for health care professionals, NAF

37. Case 2 • A 24 year-old law student comes to see you. She is two weeks late with her period, she took a home pregnancy test and it was positive. She was taking the birth control pill and is certain she never missed a pill. She knows she cannot handle a pregnancy or a baby. You counsel her:

38. Case 3 • A 17 year-old comes to see you with her mother. She had sex with her boyfriend and didn’t use anything. She is pregnant, at 14 weeks. She is in your office because the local abortion clinic referred her to you since you are at a tertiary care clinic – the clinic closest to her only goes through 12 weeks.

39. Case 4 • A 38 year old comes to see you. She is devastated to have learned her fetus has trisomy 18, diagnosed by first elevated triple screen followed by amniocentesis. She is a professor at the university, her husband also works full time, and she knows they do not have the capacity to carry this fetus to term with an approximately 50% chance of stillbirth before term, and then only a 10% survival rate to the first year of life. She desires termination.

40. Case 5 • The mother of a 16 year old patient calls you and demands to know if her daughter is using birth control pills. You: a) Tell her that it is, but you prescribed it for acne. b) Tell her which pill she is taking, and when she started taking it. c) Explain that you can’t tell her anything because the patient did not give you permission to talk about her health care with her parents d) Explain that more than 50% of adolescents have sex by the age of 18

41. Case 6 • A 17 year old presents asking to be tested for STIs. She states that her mother will be furious if she finds out that she has an STI. • You: • A) Tell her that she will need to tell her parents the results of her test • B) Tell her that you will tell her mother that you just did a pap smear • C)Reassure her that all mothers react that way • D) Reassure her that testing for STIs is completely confidential, and that her mother will not be notified of the results

42. Case 7 • 20yo G1 @ 40+2 weeks presents to L&D in active labor. She is a refugee from Sudan and has a history of type 3 female genital cutting (infibulation). Her clitoris and labia minora have been removed and her labia majora have been sewn together so that she only has a 2-3 cm vaginal opening. She understands that she will need to be opened to deliver her baby vaginally and requests that you “reinfibulate” her after delivery so that she can look “normal” again, the way she currently looks. She tells you that if she is not reinfibulated, her husband may not accept her back and she will be an outcast in her local Sudanese community. Although there are laws prohibiting infibulation in the U.S., there are no laws prohibiting reinfibulation.

43. Case 7 • What are the benefits and harms to performing reinfibulation? • Does the patient have the right to have reinfibulation performed given that she is an adult and strongly believes that is “normal” and even beautiful for women? How can cultural norms affect our interpretation of beneficence? • Does the patient have full informed consent given that she already knows what her condition will be like after reinfibulation? • How can we be sure that her decision is autonomous? • What do you tell the patient?

44. Case 8 • 42yo G7P0 @ 23+0 weeks presents with severe pre-eclampsia and HELLP. This is a highly-desired pregnancy as she has had 6 prior miscarriages and conceived this pregnancy after undergoing 3 IVF cycles. Her OB recommends a Dilation and Evacuation (D&E) abortion to preserve her health, and possibly her life. Patient understands that she needs to deliver, but requests a cesarean section instead. She understands that a 23-week delivery is associated with poor outcomes, but says she won’t be able to live with herself if she ends the pregnancy. She says she is willing to undergo the increased risks of cesarean for the potential survival benefit for her baby.

45. Case 8 • What are the benefits and harms to performing the D&E? • What are the benefits and harms to performing the cesarean section? • How do beneficence/non-maleficence apply to this situation? • Does the patient have the right to a cesarean section? If her OB is unwilling do perform it, is he/she required to find another OB to do it instead? • Does the patient have full informed consent given that she knows the risks of cesarean section and the poor outcomes for a 23-week delivery? • What do you tell the patient?

46. Conclusion