1. Elizabeth Abraham, MA, MSc, C.Tran. Manager, Interpretation and Translation Services Kyle Anstey, Ph.D. Bioethicist, University Health Network Joint Centre for Bioethics, University of Toronto Informed Consent and Professional Interpretation Services

2. Why is professional interpretation an important and novel topic in bioethics? 1. Disproportionate attention relative to the demand for and complexity of providing this service and the significant harm and costs resulting from a failure to provide professional (vs. ad hoc) interpretation

3. Why is professional interpretation an important and novel topic in bioethics? (cont.) 2. Compromised informed consent in the absence of the required use of professional interpretation services for LEP patients 3. Even if professional interpretation is required, these professionals will have to deal with issues like family dismissal, and there is no literature on how to manage these situations

4. 1. Attention to professional interpretation in bioethics is disproportionate to: the demand for these services the complexity of providing them the harmful outcomes of not doing so

5. Small literature on ethical issues and professional interpretation Significant literature linking lack of professional interpretation to poor health care quality and outcomes Very small literature on the importance of professional interpretation for assuring informed consent and confidentiality for LEP patients This research is overwhelmingly found in medical vs. bioethics journals

6. Estimated LEP Population in Toronto 213,000 “no knowledge” of English or French Census figures do not capture people who need an interpreter Estimated LEP population: 450,000 The census itself is not translated into all languages The census does not capture persons living in the country illegally

7. Lack of explicit requirements and funding for professional interpretation No explicit Federal or Provincial legislative requirement in Canada No dedicated Federal or Provincial funding Certification for Community Interpreters in Ontario under development Varying Organizational Policy Requirements: Trend: Encourage, but don’t require professional interpretation Trend: Discourage, but don’t prohibit ad hoc interpretation by staff or family members

8. Linking professional interpretation services and outcomes for LEP patients  Length of stay  Misdiagnosis, drug error  Patient safety  Patient adherence to treatment plan  Patient satisfaction

9. Linking professional interpretation services and outcomes for LEP patients Reduced costs  Reduced length of stay  Reduction of unnecessary diagnostic tests, inappropriate admissions & readmissions, overuse of emergency services Reduced liability  Failure to provide interpretation  Communication errors

10. History of informed consent Concept of requiring a patient’s consent to treatment dates back to 18 th c England Stems from Latin adage Noli me tangere (do not touch me) France: jurisprudence established requirement to obtain informed consent in 1910 Legal doctrine articulated in US in 1914 Lexicon evolved to “informed consent” (1957) To treat a patient without his or her consent is battery (nonconsensual touching that is harmful/offensive)

11. Obtaining informed consent from LEP patients Family and untrained bilingual staff (ad hoc interpreters) are not acceptable substitutes for medical interpreters when obtaining informed consent

12. 2. Compromised informed consent in the absence of professional interpretation for LEP patients

13. Documentation Consent forms document a process vs. being a substitute for it. That said… Evidence that LEP patients less likely to have documented informed consent, even where on-site medical interpreters are available. More importantly, where there is documentation of informed consent, it suggests that there are differences in how consent is obtained from LEP patients.

14. Improvements in Documentation Revised consent forms: Accommodate literacy level Include requirements and document Involvement of professional interpretation Beyond the consent form: Other documentation of use of professional interpretation for LEP patients (e.g. diagnosis, medication instructions)

15. Ad hoc interpretation: why are family or staff members used? Convenience "It is easier for me to order a $1,400 CT scan than a translator... even though that information will be more valuable than a CT scan.” Dr. Jose Silveira, Chief of Psychiatry, St. Joseph’s Health Centre, Toronto Avoiding conflict with family? “In our country, this is not done” “My mother will lose hope if you tell her this”

16. Ad hoc interpretation: why are family or staff members used? Cost of providing? – Less than the cost of an x-ray! – Ignores huge cost of not providing Satisfaction with ad hoc skill and professionalism? – Not supported by little research done (Kuo and Fagan 1999; Mesa, 1997)

17. Compromised informed consent with ad hoc interpreters: Family Lack of proficiency in both languages Lack of knowledge and training to competently interpret medical procedures and concepts Tendency to significantly filter information Failure to disclose serious diagnoses to patients due to family’s desire to protect patient from negative information

18. Related issues of ad hoc interpretation: Family Conflict of interest Confidentiality  Role, size of/membership in ethnic communities

19. Compromised informed consent with ad hoc interpreters: Staff Lack of training and evidence of proficiency, competencies Trust: janitor as member of the healthcare team

20. Related issues of ad hoc interpretation: Staff Involvement frequently not documented Accountability of many “pulled in staff” questionable given scope of their practice Role confusion and conflicts of interest

21. 3. Dismissal of professional interpreter Even if professional interpretation is mandated, these professionals will have to deal with issues like family or staff dismissal, and there is no literature on how to manage these situations

22. Strategies for dealing with dismissal: Family Demonstrate appreciation of family’s views Determine if disclosure is really the issue e.g. Fears about confidentiality in small cultural communities Communicate why professional interpreters are needed

23. Strategies for dealing with dismissal: Family Where a Substitute Decision-Maker is involved, explain their role and obligations (i.e., acting on expressed wishes or, where they are unknown or not applicable, in the patient’s best interests) Use additional mediation resources where necessary (e.g. Patient Relations, Bioethics) Possible compromise: involvement of family in interpreting with understanding that professional interpreter be present and can clarify and supplement family statements.

24. Strategies for dealing with dismissal: Staff Have a policy that backs up and empowers staff by requiring professional interpretation services for specific acts (e.g. obtaining informed consent from a patient) Educate unit staff of risks of providing or enabling informal interpretation Educate interpreters to empower them in raising concerns with members of the healthcare team

25. Questions? Contact: Elizabeth Abraham elizabeth.abraham@uhn.on.ca Kyle Anstey kyle.anstey@uhn.on.ca