Navigating Ethics in Healthcare

1. Heather Fitzgerald, MS, RNC-NIC, Clinical Nurse Ethicist Children’s Hospital Colorado CAPI Conference September 8, 2013 Navigating Ethics in Healthcare

2. Disclosures No relevant financial relationships with any commercial interests.

3. Objectives Distinguish between ethics and morals. Distinguish between medical ethics and professional codes of ethics. Identify core professional ethical standards for medical interpreters. Examine examples of medical ethics through case review. Discuss bias and impartiality through analysis of temperament. Reflect on the medical interpreter role in health care conflict and tools you have to navigate effectively.

4. Ethics versus morals: What’s the difference? • What guides us? • Ethics versus morals • What do we mean by “ethics?”

5. Medical Ethics and Medical Interpreter Ethics • Medical ethics: principles of right or good conduct: identify and analyze the interests, values and principles at stake for the parties involved and provide guidance to support decision making and problem solving in ethically-complex situations. • Interpreter ethics: principles of right or good conduct: expectations of professionalism, standards of behavior

6. Medical Ethics • “The goal of ethics deliberations is not to achieve absolute certainty about what is right, but rather to achieve reliability and coherence in behavior, choices, character, process, and outcomes. Judgments necessarily have to be grounded by appealing to ethical theories and principles to avoid making decisions solely on the basis of individual opinions.” • “Ethical deliberation involves a process of discerning, analyzing, and articulating ethically defensible positions and then making a decision about which position is most ethically justifiable.” • -- Rushton and Penticuff, 2007

7. Medical Ethics • Principlism: 4 principles – autonomy (respect for persons), beneficence (person’s well-being, doing good), nonmaleficence (doing no harm), justice (fairness) • Values at stake (relationships, respect, compassion, fidelity, quality of life, etc.) • Law, precedent • Confidentiality, privacy

8. Interpreter Ethics • National Code of Ethics for Interpreters in Health Care • Medical Interpreting Standards of Practice • Confidentiality • Respect for privacy • Accuracy and completeness (fidelity to the original message) • Impartiality, refrain from counseling, advising, projecting personal beliefs and bias (carefully manage the power of being the only one who understands both languages)

9. Interpreter Ethics, continued • Maintain boundaries, professional distance (refrain from personal involvement) • Professional integrity • Advocacy • Client/patient well-being (beneficence) • Respect for culture and cultural differences (health care itself is a culture)

10. Codes of Ethics • Are NOT: • answer books for every complex situation you will encounter • rules about how to solve values in tension • a codified set of transcultural ethical principles • defense of your subjective opinions or beliefs

11. Baby Gabrielle • Anencephalic Donor • 1987, Loma Linda University, prenatal diagnosis of anencephaly (lacking majority of brain) • MOC decided to continue the pregnancy and deliver her and sustain her life by medical means to allow her to donate her organs to help other children live (anencephalic babies will die, but over a period of time that renders their organs ineligible for organ donation). • Baby Paul, born 3 hours before Baby Gabrielle, had a potentially-fatal congenital heart malformation • Baby Gabrielle’s heart was transplanted into Baby Paul • Ethical issues: beneficence, non-maleficence, benefits versus burdens, best interest, surrogate decision-making, ordinary versus extraordinary measures, informed consent.

12. Baby K • 1992, Baby K born with anencephaly (had only a brainstem: autonomic regulation), Virginia • Prenatal dx; MOC carried baby to term due to her Christian faith and belief in the sanctity of life • Permanently unconscious, deaf, blind, non-responsive to painful stimuli, did have basic reflexes • Hospital viewed care as futile • MOC requested vent support despite inability to treat/cure underlying condition • Hospital encouraged MOC to approve DNR and withdraw ventilator • MOC refused • Baby was ventilated for 6 weeks while hospital searched for another hospital to assume care

13. Baby K continued • Baby K weaned off the vent, moved to nursing facility • Multiple readmissions for resp. distress • 6 mos of age readmitted w/severe RD • Legal action: hospital filed motion for guardian, sought court order to limit treatment to palliative care • Trial: standard of care vs. religious freedom and sanctity of life • District Court interpreted EMTALA (Emergency Medical Treatment and Active Labor Act) as supporting that any pt who presents w/emergency must get “such treatment as may be required to stabilize the medical condition” before transfer to another facility. Supported Baby K getting ventilator support • Dissenting judge: medical condition is anencephaly, not RD

14. Baby Fay • 1984, HLHS, Loma Linda University • “human experimentation” • Human heart transplant not offered • Xenotransplantation (cross-species transplantation) with a baboon heart • Baby Fae died 20 days after transplant from rejection complications • Ethical issues: beneficence, maleficence, benefits and burdens, ordinary versus extraordinary means, best interests, experimentation and untested technology, informed consent, surrogate decision-making

15. BREAK • 10 minutes • When we come back: • Can We Ever Truly Achieve Impartiality? • Case Studies

16. Can We Ever Truly Achieve Impartiality? • Personal morals • Cultural influences • Life experiences • How alert are we to our own biases? • What role does temperament play?

17. Gregorc Brain Dominance Model

18. Concrete Random (CR), • Common Traits • Artisans - Improvisers • Tend to be fun-loving, optimistic, realistic, and focused on the here and now • Pride themselves on being unconventional, bold, and spontaneous. • Make playful mates, creative parents, and troubleshooting leaders. • Are excitable, trust their impulses, want to make a splash, seek stimulation, prize freedom, and dream of mastering action skills.

19. The Improviser Temperament What others should know: How others perceive me: Fun, quick, a risk-taker Maverick, free spirit They believe that some things come easy to me They see me as a lucky person Sometimes I lack focus and miss important details Fun to be around but want me to prove that I am reliable • I need space • I enjoy people but find too many expectations confining • I want to do things, not just think, plan, or talk about them • I want to be appreciated for my trouble shooting talents • I want my ‘free-spirit’ ways to be seen as viable and responsible ways to live life

20. The Concrete Sequential (CS) • Common Traits • Guardians - Stabilizers • Pride themselves on being dependable, helpful, and hard-working. • Make loyal mates, responsible parents, and stabilizing leaders. • Tend to be dutiful, cautious, humble, and focused on credentials and traditions. • Are concerned citizens who trust authority, join groups, seek security, prize gratitude, and dream of meting out justice.

21. The Stabilizer Temperament What others should know: How others perceive me: Organized, courteous, responsible, and loyal I am someone they can count on Sometimes I am too structured, organized, and not spontaneous enough Change resistant even though my intentions are to do what needs to be done to make the change happen A good student, head of the class • I need to feel appreciated for the simple ways I support others • A sincere thank you or gesture goes a long way • I like to be asked to be included in projects even though I might not have time to participate • When people follow through on their commitments, it is more than a courtesy, it shows me respect as a person • I love it when people ask me for my experience and support

22. Abstract Sequential (AS) • Common Traits • Theorist – Rationals • Tend to be pragmatic, skeptical, self-contained, and focused on problem-solving and systems analysis. • Pride themselves on being ingenious, independent, and strong willed. • Make reasonable mates, individualizing parents, and strategic leaders. • Are even-tempered, they trust logic, yearn for achievement, seek knowledge, prize technology, and dream of understanding how the world works.

23. The Theorist Temperament What others should know: How others perceive me Intelligent Lacking true emotion, or people misinterpret what emotion I do show People see me as having particular talents even though my talents are intrinsic of who I am. • I need to be allowed to think for myself and still need room to be creative • I want to be taken seriously • I need people to see my critiques as contributions towards improvements • Work with me towards long term goals, my strategic thinking is seen as tough minded, even though my intentions are working towards the brighter future

24. Abstract Random (AR) • Common Traits • Catalyst – Idealist • Want to be authentic, benevolent, and empathic • Search for identity, meaning, and significance • Are relationship oriented, particularly valuing meaningful relationships • Tend to be idealistic and visionary, wanting to make the world a better place • Look to the future • Trust their intuition, imagination, and impressions • Focus on developing potential, fostering and facilitating growth through coaching, teaching, counseling, and communicating • Generally are enthusiastic • Often are gifted in the use of metaphors to bridge different perspectives. • Frequently are drawn to work that inspires and develops people and relationships

25. The Catalyst Temperament What others should know: How others perceive me: People person Empathetic, imaginative, idealistic, mysterious, intuitive, gullible, friendly, empowering, committed and genuine Make others feel good about who they are Good communicator I wish for too much and people are afraid they are not able to live up to the ideal image I have for them • I need to have a personal connection • I need to know that each person is acting authentically towards me • I expect open discourse and personal sharing • I love to tell my personal stories and love when people listen • I need feedback that people believe in me • I look for a willingness to stand together in the face of conflict with the belief that working through it will only strengthen a relationships bond

26. Giant apples are falling off the trees early this season…… – What can I do with all them apples (apple pie, apple jam, share with friends, family etc.) – Reminds of the bounty of and nature and the fickle cycle of the seasons….. – What factors are causing the apples to fall early? – Someone better pick them apples up!

27. The Nature Of Temperament • Temperament is inborn • Temperament reveals inborn tendencies through themes and core values of a personality • Temperament remains constant • As we grow and develop, our temperament pattern stays the same while we evolve into a more mature version of what we were in the beginning • Temperament drives behavior • Temperament influences the pattern of growth and development of a character

28. Discussion and The Bottom Line • Knowing your temperament pattern can go a long way helping you identify tendencies, behaviors and biases.

29. Cases • When a family asks not to tell: • Pharmacist, Ms. Paulis • Maria Sanchez, getting prescriptions at hospital discharge for cancer treatment for her mother • Mrs. Rodriguez, Mrs. Sanchez’s elderly mother, who has a brain tumor and is going home today from the hospital

30. When a family asks not to tell • With medical interpreter assistance, Mrs. Sanchez asks Ms. Paulis not to tell her mother what the medications are for, saying, “My mother doesn’t know she has a brain tumor. There is no reason for her to know. She is not a candidate for surgery or radiation, so they are trying these medications. She is already dizzy and confused at times, I don’t want to add to her pain. She’s going to be under my constant care, so you can just tell me what you would have told her. I am a good daughter, and in our culture, we take good care of our parents, so you don’t have to worry.” • Ms. Paulis replies, “Well, I have to tell her about her medications. It’s my ethical obligation.”

31. Conflict at the Bedside • You are paged to the bedside of a very agitated patient who is yelling and distressed. The medical and nursing teams are trying to calm the patient down but need your assistance interpreting what the patient is saying to understand her distress. The patient tells you she wants a different nurse. Her nurse is African American and the patient says she doesn’t want to be touched by (uses a very derogatory term) an African American person. The medical provider says that is racist and refuses to make a staffing change to accommodate the patient.

32. Complex decision making • Teenage parents expecting their first child, who they recently discovered has a life-threatening diagnosis: You are interpreting during an office visit with the surgeon, who is explaining the options to the young parents. Sitting back with his arms crossed, he says, “You can either wait and see, or (leaning forward toward the parents and uncrossing his arms) you can take charge and do surgery now to fix it.” The parents look at each other nervously and the father says, “We’ll do the surgery.”

33. Some TakeawaysFrom Worlds Apart, a documentary film by Maren Grainger-Monson and Julia Haslett • Patients and health care professionals often have different perspectives, values, and beliefs about health and illness that can lead to conflict, especially when communication is limited by language and cultural barriers. • Discrimination and mistrust affect patient’s interactions with providers and the health care system.

34. Some TakeawaysFrom Worlds Apart, a documentary film by Maren Grainger-Monson and Julia Haslett • Inadequate interpretation for people of limited English proficiency in the health care setting is a form of discrimination (USDHHS Office for Human Rights, title VI) • The ethical and legal obligation of informed consent in medicine is to assure a patient’s understanding of their diagnosis and treatment options so they can participate in decisions about their care, not just indicate they have heard the information and sign a consent form.

35. Resources • A National Code of Ethics for Interpreters in Health Care, 2004. The National Council on Interpreting in Health Care Working Paper Series. • Medical Interpreting Standards of Practice, 2007. The International Medical Interpreters Association. • When a family asks not to tell, adapted from Case Studies in Pharmacy Ethics, Amy Haddad and Robert Veatch. • ANA Code of Ethics with Interpretive Statements, 2001. The American Nurses Association.