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Published in: Journal of General Internal Medicine 5/2007

01-05-2007 | Original Article

Are Good Intentions Good Enough?: Informed Consent Without Trained Interpreters

Authors: Linda M. Hunt, PhD, Katherine B. de Voogd, MA

Published in: Journal of General Internal Medicine | Issue 5/2007

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Abstract

Objective

To examine the informed consent process when trained language interpreters are unavailable.

Background

Ensuring sufficient patient understanding for informed consent is especially challenging for patients with Limited English Proficiency (LEP). While US law requires provision of competent translation for LEP patients, such services are commonly unavailable.

Design and Participants

Qualitative data was collected in 8 prenatal genetics clinics in Texas, including interviews and observations with 16 clinicians, and 30 Latina patients. Using content analysis techniques, we examined whether the basic criteria for informed consent (voluntariness, discussion of alternatives, adequate information, and competence) were evident for each of these patients, contrasting LEP patients with patients not needing an interpreter. We present case examples of difficulties related to each of these criteria, and compare informed consent scores for consultations requiring interpretation and those which did not.

Results

We describe multiple communication problems related to the use of untrained interpreters, or reliance on clinicians’ own limited Spanish. These LEP patients appear to be consistently disadvantaged in each of the criteria we examined, and informed consent scores were notably lower for consultations which occurred across a language barrier.

Conclusions

In the absence of adequate Spanish interpretation, it was uncertain whether these LEP patients were provided the quality and content of information needed to assure that they are genuinely informed. We offer some low-cost practice suggestions that might mitigate these problems, and improve the quality of language interpretation, which is essential to assuring informed choice in health care for LEP patients.
Literature
1.
go back to reference Laine C, Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996;275(2):152–6.PubMedCrossRef Laine C, Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996;275(2):152–6.PubMedCrossRef
2.
go back to reference Marini TS. Decisions about amniocentesis by advanced maternal age patients following maternal serum screening may not always correlate clinically with screening results: need for improvement in informed consent process. Am J Med Genet. 2002;109(3):171–5.PubMedCrossRef Marini TS. Decisions about amniocentesis by advanced maternal age patients following maternal serum screening may not always correlate clinically with screening results: need for improvement in informed consent process. Am J Med Genet. 2002;109(3):171–5.PubMedCrossRef
3.
go back to reference Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med. 1996;125(9):763–9.PubMed Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med. 1996;125(9):763–9.PubMed
4.
go back to reference Rapp R. Chromosomes and communication: the discourse of genetic counseling. Med Anthropol Q. 1988;2(2):143–57.CrossRef Rapp R. Chromosomes and communication: the discourse of genetic counseling. Med Anthropol Q. 1988;2(2):143–57.CrossRef
5.
go back to reference Dunne C, Warren C. Lethal autonomy: the malfunction of the informed consent mechanism within the context of prenatal diagnosis of genetic variants. Issues Law Med. 1998;14(2):165–203.PubMed Dunne C, Warren C. Lethal autonomy: the malfunction of the informed consent mechanism within the context of prenatal diagnosis of genetic variants. Issues Law Med. 1998;14(2):165–203.PubMed
6.
go back to reference Emery J. Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper. Health Expect. 2001;4:81–6.PubMedCrossRef Emery J. Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper. Health Expect. 2001;4:81–6.PubMedCrossRef
7.
go back to reference Freda MC, DeVore N, Valentine-Adams N, Bombard A, Merkatz IR. Informed consent for maternal serum alpha-fetoprotein screening in an inner city population: how informed is it? J Obstet Gynecol Neonatal Nurs. 1998;27(1):99–106.PubMedCrossRef Freda MC, DeVore N, Valentine-Adams N, Bombard A, Merkatz IR. Informed consent for maternal serum alpha-fetoprotein screening in an inner city population: how informed is it? J Obstet Gynecol Neonatal Nurs. 1998;27(1):99–106.PubMedCrossRef
9.
go back to reference Office for Civil Rights. Policy Guidance - Title VI Prohibition Against National Origin Discrimination as it Affects Persons with Limited English Proficiency. Office for Civil Rights, U S Department of Health and Human Services 2002 [cited 2002 June 19]. Available from: http://www.hhs.gov/ocr/lep/guide.html. Office for Civil Rights. Policy Guidance - Title VI Prohibition Against National Origin Discrimination as it Affects Persons with Limited English Proficiency. Office for Civil Rights, U S Department of Health and Human Services 2002 [cited 2002 June 19]. Available from: http://​www.​hhs.​gov/​ocr/​lep/​guide.​html.
10.
go back to reference Fortier JP, Strobel C, Aguilera E. Language barriers to health care: federal and state initiatives, 1990–1995. J Health Care Poor Underserved. 1998;9(suppl):S81–100. Fortier JP, Strobel C, Aguilera E. Language barriers to health care: federal and state initiatives, 1990–1995. J Health Care Poor Underserved. 1998;9(suppl):S81–100.
12.
go back to reference Keers-Sanchez A. Mandatory provision of foreign language interpreters in health care services. J Leg Med. 2003;24(4):557–78.PubMedCrossRef Keers-Sanchez A. Mandatory provision of foreign language interpreters in health care services. J Leg Med. 2003;24(4):557–78.PubMedCrossRef
13.
go back to reference Perkins J, Vera Y. Legal protections to ensure linguistically appropriate health care. J Health Care Poor Underserved. 1998;9(suppl):S62–80. Perkins J, Vera Y. Legal protections to ensure linguistically appropriate health care. J Health Care Poor Underserved. 1998;9(suppl):S62–80.
14.
go back to reference US Department of Health and Human Services. Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons. 8-4-2003. HHS Office for Civil Rights. US Department of Health and Human Services. Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons. 8-4-2003. HHS Office for Civil Rights.
16.
go back to reference Flores G. The impact of medical interpreter services on the quality of health care: a systematic review. Med Care Res Rev. 2005;62(3):255–99.PubMedCrossRef Flores G. The impact of medical interpreter services on the quality of health care: a systematic review. Med Care Res Rev. 2005;62(3):255–99.PubMedCrossRef
17.
go back to reference Betancourt JR, Jacobs EA. Language barriers to informed consent and confidentialitiy: the impact on women’s health. J Am Med Womens Assoc. 2000;55(5):294–5.PubMed Betancourt JR, Jacobs EA. Language barriers to informed consent and confidentialitiy: the impact on women’s health. J Am Med Womens Assoc. 2000;55(5):294–5.PubMed
18.
go back to reference Carter-Pokras O, O’Neill MJ, Cheanvechai V, Menis M, Fan T, Solera A. Providing linguistically appropriate services to persons with limited English proficiency: a needs and resources investigation. Am J Manag Care. 2004;10 Spec No:SP29–36. Carter-Pokras O, O’Neill MJ, Cheanvechai V, Menis M, Fan T, Solera A. Providing linguistically appropriate services to persons with limited English proficiency: a needs and resources investigation. Am J Manag Care. 2004;10 Spec No:SP29–36.
19.
go back to reference John-Baptiste A, Naglie G, Tomlinson G, et al. The effect of English language proficiency on length of stay and in-hospital mortality. J Gen Intern Med. 2004;19(3):221–8.PubMedCrossRef John-Baptiste A, Naglie G, Tomlinson G, et al. The effect of English language proficiency on length of stay and in-hospital mortality. J Gen Intern Med. 2004;19(3):221–8.PubMedCrossRef
20.
go back to reference Riddick S. Improving access for limited English-speaking consumers: a review of strategies in health care settings. J Health Care Poor Underserved. 1998;9(suppl):S40–61. Riddick S. Improving access for limited English-speaking consumers: a review of strategies in health care settings. J Health Care Poor Underserved. 1998;9(suppl):S40–61.
21.
go back to reference Roberts CM. Meeting the needs of patients with limited English proficiency. J Med Pract Manage. 2001;17(2):71–5.PubMed Roberts CM. Meeting the needs of patients with limited English proficiency. J Med Pract Manage. 2001;17(2):71–5.PubMed
22.
go back to reference Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A. Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med. 2005;20(9):800–6.PubMedCrossRef Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A. Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med. 2005;20(9):800–6.PubMedCrossRef
23.
go back to reference Woloshin S, Bickell NA, Schwartz LM, Gany F, Welch HG. Language barriers in medicine in the United States. JAMA. 1995;273(9):724–8.PubMedCrossRef Woloshin S, Bickell NA, Schwartz LM, Gany F, Welch HG. Language barriers in medicine in the United States. JAMA. 1995;273(9):724–8.PubMedCrossRef
24.
go back to reference Woloshin S, Schwartz LM, Katz SJ, Welch HG. Is language a barrier to the use of preventive services? J Gen Intern Med. 1997;12(8):472–7.PubMedCrossRef Woloshin S, Schwartz LM, Katz SJ, Welch HG. Is language a barrier to the use of preventive services? J Gen Intern Med. 1997;12(8):472–7.PubMedCrossRef
25.
go back to reference Burgess MM. Beyond consent: ethical and social issues in genetic testing. Nat Rev Genet. 2001;2(2):147–51.PubMedCrossRef Burgess MM. Beyond consent: ethical and social issues in genetic testing. Nat Rev Genet. 2001;2(2):147–51.PubMedCrossRef
26.
go back to reference Jacobson GM, Veach PM, LeRoy BS. A survey of genetic counselors’ use of informed consent documents for prenatal genetic counseling sessions. J Genet Couns. 2001;10(1):3–24.PubMedCrossRef Jacobson GM, Veach PM, LeRoy BS. A survey of genetic counselors’ use of informed consent documents for prenatal genetic counseling sessions. J Genet Couns. 2001;10(1):3–24.PubMedCrossRef
27.
go back to reference Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press; 1994. Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press; 1994.
28.
go back to reference Braddock CH III, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA. 1999;282(24):2313–20.PubMedCrossRef Braddock CH III, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA. 1999;282(24):2313–20.PubMedCrossRef
29.
go back to reference Headings VE. Revisiting foundations of autonomy and beneficence in genetic counseling. Genet Couns. 1997;8(4):291–4.PubMed Headings VE. Revisiting foundations of autonomy and beneficence in genetic counseling. Genet Couns. 1997;8(4):291–4.PubMed
30.
go back to reference Barnes DM, Davis AJ, Moran T, Portillo CJ, Koenig BA. Informed consent in a multicultural cancer patient population: implications for nursing practice. Nursing Ethics 1998;5(5):412–23.PubMed Barnes DM, Davis AJ, Moran T, Portillo CJ, Koenig BA. Informed consent in a multicultural cancer patient population: implications for nursing practice. Nursing Ethics 1998;5(5):412–23.PubMed
31.
go back to reference Flores G, Abreu M, Schwartz I, Hill M. The importance of language and culture in pediatric care: case studies from the Latino community. J Pediatr. 2000;137(6):842–8.PubMedCrossRef Flores G, Abreu M, Schwartz I, Hill M. The importance of language and culture in pediatric care: case studies from the Latino community. J Pediatr. 2000;137(6):842–8.PubMedCrossRef
32.
go back to reference McCabe M, Morgan F, Curley H, Begay R, Gohdes DM. The informed consent process in a cross-cultural setting: is the process achieving the intended result? Ethn Dis. 2005;15(2):300–4.PubMed McCabe M, Morgan F, Curley H, Begay R, Gohdes DM. The informed consent process in a cross-cultural setting: is the process achieving the intended result? Ethn Dis. 2005;15(2):300–4.PubMed
33.
go back to reference Simon C, Zyzanski SJ, Eder M, Raiz P, Kodish ED, Siminoff LA. Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer. J Clin Oncol. 2003;21(11):2173–8.PubMedCrossRef Simon C, Zyzanski SJ, Eder M, Raiz P, Kodish ED, Siminoff LA. Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer. J Clin Oncol. 2003;21(11):2173–8.PubMedCrossRef
34.
go back to reference Huibers AK, van ’t Spijker A. The autonomy paradox: predictive genetic testing and autonomy: three essential problems. Patient Educ Couns. 1998;35:53–62.PubMedCrossRef Huibers AK, van ’t Spijker A. The autonomy paradox: predictive genetic testing and autonomy: three essential problems. Patient Educ Couns. 1998;35:53–62.PubMedCrossRef
35.
go back to reference Kuller JA, Laifer SA. Contemporary approaches to prenatal diagnosis. Am Fam Physician. 1995;52(8):2277–6. Kuller JA, Laifer SA. Contemporary approaches to prenatal diagnosis. Am Fam Physician. 1995;52(8):2277–6.
36.
go back to reference Kaufert JM, Putsch RW. Communication through interpreters in healthcare: ethical dilemmas arising from differences in class, culture, language, and power. J Clin Ethics. 1997;8(1):71–87.PubMed Kaufert JM, Putsch RW. Communication through interpreters in healthcare: ethical dilemmas arising from differences in class, culture, language, and power. J Clin Ethics. 1997;8(1):71–87.PubMed
37.
go back to reference Hunt LM, de Voogd KB. Autonomy, danger, and choice: the moral imperative of an “at risk” pregnancy for a group of low income Latinas in Texas. In: Harthorn BH, Oaks L, eds. Risk, Culture, & Health Inequality: Shifting Perceptions of Danger and Blame. Greenwood Press: 2003:74–103. Hunt LM, de Voogd KB. Autonomy, danger, and choice: the moral imperative of an “at risk” pregnancy for a group of low income Latinas in Texas. In: Harthorn BH, Oaks L, eds. Risk, Culture, & Health Inequality: Shifting Perceptions of Danger and Blame. Greenwood Press: 2003:74–103.
38.
go back to reference Hunt LM, de Voogd KB, Castañeda H. The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making? Patient Educ Couns. 2005;56:302–12.PubMedCrossRef Hunt LM, de Voogd KB, Castañeda H. The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making? Patient Educ Couns. 2005;56:302–12.PubMedCrossRef
39.
go back to reference Browner CH, Preloran HM, Casado MC, Bass HN, Walker AP. Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients. Soc Sci Med. 2003;56:1933–46.PubMedCrossRef Browner CH, Preloran HM, Casado MC, Bass HN, Walker AP. Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients. Soc Sci Med. 2003;56:1933–46.PubMedCrossRef
40.
go back to reference Miles M, Huberman AM. Qualitative Data Analysis: An Expanded Source Book. 2nd ed. Sage Publications; 1994. Miles M, Huberman AM. Qualitative Data Analysis: An Expanded Source Book. 2nd ed. Sage Publications; 1994.
41.
go back to reference Bernard HR. Research Methods in Anthropology. 2nd ed. Thousand Oaks, CA: Sage Publishers; 1994. Bernard HR. Research Methods in Anthropology. 2nd ed. Thousand Oaks, CA: Sage Publishers; 1994.
42.
go back to reference Dailey JV, Pagnotto MA, Fontana-Bitton S, Brewster SJ. Role of the genetic counselor: an overview. J Perinat Neonatal Nurs. 1995;9(3):32–44.PubMed Dailey JV, Pagnotto MA, Fontana-Bitton S, Brewster SJ. Role of the genetic counselor: an overview. J Perinat Neonatal Nurs. 1995;9(3):32–44.PubMed
43.
go back to reference Wertz DC, Gregg R. Genetics services in a social, ethical and policy context: a collaboration between consumers and providers. J Med Ethics. 2000;26(4):261–5.PubMedCrossRef Wertz DC, Gregg R. Genetics services in a social, ethical and policy context: a collaboration between consumers and providers. J Med Ethics. 2000;26(4):261–5.PubMedCrossRef
44.
go back to reference Hunt LM, de Voogd KB. Clinical myths of the cultural “other”: implications for Latino patient care. Acad Med. 2005;80(10):918–24.PubMedCrossRef Hunt LM, de Voogd KB. Clinical myths of the cultural “other”: implications for Latino patient care. Acad Med. 2005;80(10):918–24.PubMedCrossRef
45.
go back to reference Levine RJ. Ethics and Regulation of Clinic Research. New Haven: Yale University Press; 1986. Levine RJ. Ethics and Regulation of Clinic Research. New Haven: Yale University Press; 1986.
47.
go back to reference McQueen MJ. Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta. 2002;315(a):41–8.PubMedCrossRef McQueen MJ. Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta. 2002;315(a):41–8.PubMedCrossRef
48.
go back to reference Browner CH, Preloran HM, Cox SJ. Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners. Am J Public Health. 1999;89(11):1658–66.PubMedCrossRef Browner CH, Preloran HM, Cox SJ. Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners. Am J Public Health. 1999;89(11):1658–66.PubMedCrossRef
49.
go back to reference Kenen RH. The at-risk health status and technology: a diagnostic invitation and the ‘gift’ of knowing. Soc Sci Med. 1996;42(11):1545–53.PubMedCrossRef Kenen RH. The at-risk health status and technology: a diagnostic invitation and the ‘gift’ of knowing. Soc Sci Med. 1996;42(11):1545–53.PubMedCrossRef
50.
go back to reference Hunt LM, de Voogd KB. Do notions of risk inform patient choice? Lessons from a study of prenatal genetic counseling. Med Anthropol. 2006;25:1–27.CrossRef Hunt LM, de Voogd KB. Do notions of risk inform patient choice? Lessons from a study of prenatal genetic counseling. Med Anthropol. 2006;25:1–27.CrossRef
51.
go back to reference Baillie C, Smith J, Hewison J, Mason G. Ultrasound screening for chromosomal abnormality: women’s reactions to false positive results. Br J Health Psychol. 2005;5(4):377–94.CrossRef Baillie C, Smith J, Hewison J, Mason G. Ultrasound screening for chromosomal abnormality: women’s reactions to false positive results. Br J Health Psychol. 2005;5(4):377–94.CrossRef
52.
53.
54.
go back to reference Chen A. Doctoring across the language divide. Health Aff. 2006;25(3):808–13.CrossRef Chen A. Doctoring across the language divide. Health Aff. 2006;25(3):808–13.CrossRef
55.
go back to reference Zabar S, Hanley K, Kachur E, et al. “Oh! She doesn’t speak English!” Assessing resident competence in managing linguistic and cultural barriers. J Gen Intern Med. 2006;21(5):510–3.PubMedCrossRef Zabar S, Hanley K, Kachur E, et al. “Oh! She doesn’t speak English!” Assessing resident competence in managing linguistic and cultural barriers. J Gen Intern Med. 2006;21(5):510–3.PubMedCrossRef
56.
go back to reference Karliner LS, Perez-Stable EJ, Gildengorin G. The language divide. The importance of training in the use of interpreters for outpatient practice. J Gen Intern Med. 2004;19(2):175–83.PubMedCrossRef Karliner LS, Perez-Stable EJ, Gildengorin G. The language divide. The importance of training in the use of interpreters for outpatient practice. J Gen Intern Med. 2004;19(2):175–83.PubMedCrossRef
57.
go back to reference Bender DE, Clawson M, Harlan C, Lopez R. Improving access for Latino immigrants: evaluation of language training adapted to the needs of health professionals. J Immigr Health. 2004;6(4):197–209.PubMedCrossRef Bender DE, Clawson M, Harlan C, Lopez R. Improving access for Latino immigrants: evaluation of language training adapted to the needs of health professionals. J Immigr Health. 2004;6(4):197–209.PubMedCrossRef
58.
go back to reference Sherrill W, Crew L, Mayo RB, Mayo WF, Rogers BL, Haynes DF. Educational and health services innovation to improve care for rural Hispanic communities in the USA. Rural Remote Health. 2005;5(4):402.PubMed Sherrill W, Crew L, Mayo RB, Mayo WF, Rogers BL, Haynes DF. Educational and health services innovation to improve care for rural Hispanic communities in the USA. Rural Remote Health. 2005;5(4):402.PubMed
59.
go back to reference Ponce NA, Hays RD, Cunningham WE. Linguistic disparities in health care access and health status among older adults. J Gen Intern Med. 2006;21(7):786–91.PubMedCrossRef Ponce NA, Hays RD, Cunningham WE. Linguistic disparities in health care access and health status among older adults. J Gen Intern Med. 2006;21(7):786–91.PubMedCrossRef
Metadata
Title
Are Good Intentions Good Enough?: Informed Consent Without Trained Interpreters
Authors
Linda M. Hunt, PhD
Katherine B. de Voogd, MA
Publication date
01-05-2007
Publisher
Springer-Verlag
Published in
Journal of General Internal Medicine / Issue 5/2007
Print ISSN: 0884-8734
Electronic ISSN: 1525-1497
DOI
https://doi.org/10.1007/s11606-007-0136-1

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