Sally Bean, JD, MA Ethicist & Policy Advisor Sunnybrook Health Sciences Centre &

1. Exploring  the Legal & Ethical Dimensions of Patient Requests for ad hoc Interpreters Sally Bean, JD, MA Ethicist & Policy Advisor Sunnybrook Health Sciences Centre & University of Toronto, Joint Centre for Bioethics HIN Education Event May 23, 2013

2. Introduction • Illustrative Case • Key Issues/Questions • Health Care Consent Act & Personal Health Information Protection Act • Exploring Arguments • for & against • Management of Requests • Revisit Illustrative Case Roadmap:

3. Patient sustains a horrific acquired brain injury in a motor vehicle accident • Patient is non-communicative and deemed incapable at this time so patient’s spouse is the patient’s Substitute Decision Maker (SDM) • The wife has limited English proficiency • After identifying that the patient and wife are Albanian, a F2F interpreter is booked to update the wife on the patients status and propose a care plan moving forward. • The wife becomes very agitated when the interpreter explains why she is there and her role. • Wife insists that her husband was a very private man and would not want strangers involved in his personal affairs. Therefore, she would like her adult bilingual daughter to interpret for her. • The wife asks that the interpreter leave the room. • Both the interpreter and staff are caught off guard by the reaction and do not know how to respond. Illustrative Case

4. LEP Somalian refugee sought obstetrical care • Following birth of child, developed an infection • Patient was accompanied by a family friend who interpreted for the patient • There was no word for sterilization in the Somali language and the word was translated as “clean.” • Patient subsequently received an inappropriate tubal ligation and sued for negligence • Patient won and was awarded $80K in damages because physician “failed to take reasonable care to obtain patient’s consent.” Adan v. Davis (1998):

5. Ad Hoc Interpreter: • Bilingual family members or friends, untrained bilingual staff Definition:

6. In the rare instance where a patient or family member refuses the use of a professional medical interpreter in favor of an ad hoc interpreter such as a family member or friend: • How should we respond to these requests? • Should institutional policies address this concern? • What are reasonable accommodations? • Is informed consent waivable or subject to limitations? • From a healthcare provider perspective, what constitutes “reasonable care to obtain informed consent”? • Does it matter if it is a capable patient or a substitute decision-maker requesting use of an ad hoc interpreter? • Should patient safety, liability & professionalism trump privacy & cultural accommodation concerns? • Given the privacy implications, can/should we force an LEP patient to use a professional interpreter? Key Issues/Questions:

7. Should we: • discourage; • prohibit; • conditionally permit (with restrictions/stipulations); • permit (i.e. unrestricted) Patients or substitute decision makers to decline the use of professional medical interpreters in favor of an ad hoc interpreter, e.g. family member, friend or staff member? Overarching Policy & Practice Question:

8. (AMA Guide to Communicating w/ LEP Patients) Types of Interpretation & Corresponding Potential for Use • Low: Non-medical communications such as scheduling follow-up or making appointments for referrals; some low-risk medical encounters, such as medication refills, annual influenza vaccination, etc. • Moderate: Routine follow-up for chronic disease, patient triage • High: Consent discussions, diagnostic evaluations for new problems, end-of-life discussions

9. 1)      Capable • Person is able to understand the information that is relevant to making a decision AND able to appreciate the reasonably foreseeable consequences of the decision. 2)    Voluntary • Consent must be voluntary and must not have been obtained under duress, compulsion, fraud, or misrepresentation. 3)      Informed • The HCP must provide: nature & purpose of the proposed treatment, alternative courses of action, material side effects, the risks and benefits of undergoing treatment, the likely consequences of not having treatment. 4)      Treatment Specific • Consent must be specific to the proposed treatment or plan of treatment. Health Care Consent Act 1996 c.2, Sched. A Health Care Consent Act (HCCA) Requirements for Valid Informed Consent

10. “Although any particular patient may waive aside all explanations, may have no questions, and may be prepared to submit to the treatment whatever the risks may be without any explanatory discussion, physicians must exercise cautious discretion in accepting such waivers.” • (CMPA Consent Guide for Physicians, 2006) • This pertains to the “informed” requirement for IC Canadian Medical Protective Association (CMPA) on IC Information Waivers

11. As in the illustrative case, if it is an SDM requesting an ad hoc interpreter, clarify the rules & requirements for acting as a SDM per PHIPA. • If the information is necessary for making a treatment decision, the SDM requirements for consenting to collection, use and disclosure of PHI are the following: • Factors to consider for consent • 24.  (1)  A person who consents under this Act or any other Act on behalf of or in the place of an individual to a collection, use or disclosure of personal health information by a health information custodian…shall take into consideration, • (a) the wishes, values and beliefs that, • (i) if the individual is capable, the person knows the individual holds and believes the individual would want reflected in decisions made concerning the individual’s personal health information, or • (ii) if the individual is incapable or deceased, the person knows the individual held when capable or alive and believes the individual would have wanted reflected in decisions made concerning the individual’s personal health information; • (b) whether the benefits that the person expects from the collection, use or disclosure of the information outweigh the risk of negative consequences occurring as a result of the collection, use or disclosure; • (c) whether the purpose for which the collection, use or disclosure is sought can be accomplished without the collection, use or disclosure; and • (d) whether the collection, use or disclosure is necessary to satisfy any legal obligation. 2004, c. 3, Sched. A, s. 24 (1). SDM Requests for Ad Hoc Interpreters

12. Promotes & enables patient self-determination (i.e. autonomy) • Respects a capable patient’s privacy (to decide who gets access to PHI) • Patient privacy and cultural accommodations trumps patient safety • Capable patients are allowed to make bad decisions • Demonstrates respect & understanding of cultural & religious diversity • Right to receive information (to enable IC) entails corollary to waive right, i.e. right NOT to receive information • Practice is not legally prohibited Arguments for Allowing Use of Ad Hoc Interpreters:

13. Patient safety & privacy concerns • Cannot ensure accuracy of information being interpreted • Consent must be informed • Patient safety, professionalism and liability concerns override patient privacy or cultural accommodations • Due to liability risks, unfair to undermine a healthcare providers duty to facilitate informed consent • Self-negates autonomy (i.e. we do not further autonomy by respecting an individual’s decision to limit their own autonomy) Arguments Against Using Ad Hoc Interpreters

14. Only use a professional interpreter for high risk discussions, e.g. informed consent, end-of-life discussions, etc. • Have a professional medical interpreter remain in the room to verify that interpretation is accurate • Show patient/SDM professional standards (indicating confidentiality as a requirement) • Have professional medical interpreter sign confidentiality agreement in presence of patient/SDM • If reluctance is culturally grounded, could potentially use an OPI vs. F2F (where appropriate) • Have patient or substitute decision-maker sign a waiver of liability that they have declined the use of a professional medical interpreter and assume the risk of any informational deficiencies • Similar to waivers used in emergency room if capable patient leaves without being assessed or capable patient that discharges him/herself against medical advice Potential Accommodations:

15. Should we: • discourage; • prohibit; • conditionally permit (with restrictions/stipulations); • permit (i.e. unrestricted) Patients or substitute decision makers to decline the use of professional medical interpreters in favor of an ad hoc interpreter, e.g. family member, friend or staff member? Overarching Policy & Practice Question:

16. Patient sustains a horrific acquired brain injury in a motor vehicle accident • Patient is non-communicative and deemed incapable at this time so patient’s spouse is the patient’s Substitute Decision Maker (SDM) • The wife has limited English proficiency • After identifying that the patient and wife are Albanian, a F2F interpreter is booked to update the wife on the patients status and propose a care plan moving forward. • The wife becomes very agitated when the interpreter explains why she is there and her role. • Wife insists that her husband was a very private man and would not want strangers involved in his personal affairs. Therefore, she would like her adult bilingual daughter to interpret for her. • The wife asks that the interpreter leave the room. • Both the interpreter and staff are caught off guard by the reaction and do not know how to respond. Revisiting Illustrative Case

17. Because request is being made by a SDM, further explore what wife means by “husband was a private person.” • Can she provide concrete examples or illustrations? • Review legislative requirements outlined in PHIPA and use it to discuss further with wife. • In light of what will be discussed in meeting, consider what accommodations may be appropriate • Given that the main concern seems to be privacy & confidentiality, noting the professional requirement for confidentiality may be helpful Case Analysis:

18. It is undisputable that using a professional medical interpreter is best practice to facilitate safe and high quality healthcare to LEP patients and should be the default practice • It is the exception that patients or their SDMs do not want a professional medical interpreter • Managing these requests is a balancing act between patient wishes/interests and ensuring high quality patient care • Accommodations should be proportional to risk associated with discussion, i.e. less flexible for high risk discussions • When a patient or substitute decision-maker refuse participation of professional interpreter, seek to understand reasons/motivations for refusal • Seek to understand the concern driving the request • If request is from a SDM, remind them of how they are legislatively required to decide (in accordance with PHIPA) • Remind the patient/SDM of professional standards for confidentiality • Where possible, strike a compromise • Institutional policies should strongly discourage use of ad hoc interpreters and require patients that refuse to use a professional medical interpreter to sign a waiver form. Summary & Recommendations

19. Conclusion

20. Health Care Consent Act, 1996, SO 1996, c 2, Sch A • Evans K. G. Consent: A Guide for Canadian Physicians, Fourth Edition, The Canadian Medical Protective Association, 2006 • Jaworska, Agnieszka, "Advance Directives and Substitute Decision-Making", The Stanford Encyclopedia of Philosophy (Summer 2009 Edition), Edward N. Zalta (ed.) • Substitute Decisions Act, 1992, SO 1992, c 30 • Personal Health Information Protection Act, 2004, SO 2004, c 3, Sch A • Searight H.R. Russell J. Cultural Diversity at the End of Life: Issues and Guidelines for Family Physicians. American Family Physician . 71(3); 2005: 515-522. • Hall D. Prochazka A. Fink A. Informed Consent for Clinical Treatment. CMAJ March 20, 2012, 184(5): 533-540. • American Medical Association. Office guide to communicating with limited English proficient patients. (2nd Edition) Resources:

21. Questions? E-mail: sally.bean@sunnybrook.ca