Volume 3, Issue 06 - August 2000

Multiculturalism and Informed Consent: Challenges and Questions

Canada has long been recognized as a multicultural society. Our commitment to the "mosaic" vs. the "melting pot" approach gives all Canadians, in principle, the freedom and responsibility to respect and encourage the expression of the multitude of cultural norms, value sets, faiths and belief systems held by the various members of our communities. Perhaps nowhere are the expressions of culture as varied and personal as when related to views on health and disease.

Put simply, the field of health care ethics attempts to determine the rightness or wrongness of actions, based on a systematic analysis of the values and value conflicts involved in the health system. Analyses such as these are incomplete without consideration of the difference that culture makes. Culture influences the manner in which we interpret health, illness and treatment options, the values we hold with respect to quality of life, death and dying, and the language or decision-making frameworks we use to discuss treatment options.¹

This article focuses specifically on the issue of informed consent in cross-cultural health care. It aims to describe some of the challenges of ensuring that each Canadian is provided the same right to give informed consent, and it asks if it is ethical to apply the same definition of informed consent to members of different cultures.

What is Informed Consent?

Informed consent is formally defined as the "autonomous authorization of a medical intervention by an individual" and has three components that must be met: disclosure, capacity and voluntariness.² Disclosure is defined as the "provision of all relevant information by the clinician and its comprehension by the patient".³ Capacity refers to the patient's ability to understand the relevant information and to appreciate the reasonably foreseeable consequences of a decision.4 The last component is voluntariness which refers to an individual's right to come to a decision freely, without force, coercion or manipulation.²

Unique Challenges

In the context of a multicultural society, where many disparate values are held when it comes to health care decision making, obtaining informed consent, as it has been defined here, poses some unique challenges.

Perhaps the biggest hurdle to overcome is the set of problems associated with disclosure. Although the values of the dominant culture advocate full disclosure and truth telling as a means of respecting and empowering individual patients, not all cultures share this view. For example, in many cultures, the delivery of bad news is seen as contributing to the illness of a patient, perhaps by causing a loss of hope or even casting a curse.^9,10 In these cases the family is often given the responsibility for making all health care decisions for the ill. It is therefore seen as cruel and unnecessary to burden the patient with the stress of health information.^9,10

Beyond disclosure, there is still the issue of comprehension by the patient. Language and cultural barriers can severely impair the extent to which a patient truly understands the information they are given. The use of an interpreter can help, but nevertheless different concepts of health and illness, and issues of translation and cultural bias on the part of the interpreter, can compromise the extent to which true disclosure is achieved.⁷

These challenges of cultural beliefs and language barriers pose another problem in the context of capacity. Informed consent to treatment is a right held by all competent members of our society. When dealing with patients from different cultures, problems can arise in the assessment of competency that may rob an individual of their right to autonomous decision making. Namely, alternate beliefs on health and treatment decisions may be perceived by a care provider who is not familiar with the patient's culture as delusions. In addition, language and vocabulary barriers may lead the provider to conclude the patient lacks the capacity to make decisions.⁴

And so, what ought we to do? By not providing the same opportunity for informed consent to members of less dominant cultures in the name of cultural sensitivity, we may be creating a system whereby the standard of care we propose for some is different than for others. And yet inflicting Western values on a patient who, for example, never would have chosen to know his/her diagnosis seems to do more harm than good, seemingly in conflict with principles such as respect for persons and non-maleficence.

Concepts of Autonomy

A perennial debate in ethics concerns whether ethics is relative to time and place or whether there are, at least some, overarching ethical principles that are universal and that all cultures ought to be held accountable for. I would argue that informed consent, as it has been defined here, does not fall into the category of a universal ethic. The principles it is rooted in however, such as autonomy and respect for persons, do apply across cultures. The problem with this is that the notion of autonomy itself, and how respect for individuals ought to be demonstrated are concepts that are influenced by cultural tradition.

The Western liberal perspective defines autonomy as self-determination on the part of the individual. This is in contrast to what has been described as the Eastern view of autonomy, where it is the family rather than the individual that has decision making authority, and it is the family, as a social unit, to which autonomy is ascribed.⁵ If conceptually the groundwork behind informed consent is different here, then this clearly has implications on how informed consent is understood. How then do we decide which perspective on autonomy or which view on informed consent is "right"?

Beyond the "Either-Or" Approach

When examining ways to provide ethically based, culturally sensitive care to all Canadians, it is imperative to recognize the true heterogeneous nature of our society. This refers not only to the array of differences between cultures, but also between members of the same culture. When we talk about culture we talk about shared norms and values, which necessitates that we generalize to some extent. However it is not constructive to use these generalizations to create guidelines whereby we treat Chinese Canadians one way, Italian Canadians another way etc. Denying members of less dominant cultures the same rights to informed consent due to presumed cultural inhibitions, familial expectations and conversational taboos is a lazy way to regard health care in a multicultural context.

A true respect for individuals would dictate that patients have the same right not to receive information that they do to receive it. Likewise it should be seen as ethically permissible for a patient to transfer their decision-making authority to another family member if that is their wish. At this point though we need to be clearer about how we can broaden our views of autonomy, respect for persons and informed consent in order to give health care providers the guidelines and tools for accommodating different cultures and value sets.

Alternative Models

A number of models offer ways of approaching and improving cross-cultural health care overall.^1,6,9 Key to these is good communication whereby health care providers discover the values of individual patients and determine what form the patient chooses informed consent to take. One potential model for this communication would include: 1. listening to the situation; ². explaining Western values; ³. negotiation.⁶

Under this model the health care provider would first actively listen to the patient and the family in an open non-judgmental way to determine their understanding of what is right and good in light of the patient's circumstances. Next the health care provider would describe the Western practice of informing the individual patient fully about diagnosis and treatment options, what informed consent means and what the Western values are that support it. Finally during the negotiation process the patient and provider would decide together how much information is to be disclosed and to whom, as well as who will be responsible for making decisions. The patient is thus given the opportunity to become informed but is allowed to decline the offer.⁶

Discussing in this open manner the level of involvement each patient desires in regard to their health care decision-making, allows us to integrate respect for individuals, other cultures and alternative perspectives on autonomy and informed consent, while at the same time maintaining our commitment to Western values and notions of autonomy.

Erin welcomes feedback on this article to ecooper@phen.ab.ca.

References

1. Auger, Jeanette A. (1995). Ethnic seniors- accessing health services. In Masi, R., Mensah, L., and McLeod, K. (Eds), Health and Cultures-Exploring the Relationships, Vol 2: 155-167. Oakville: Mosaic Press.
2. Etchells, Edward, et al. (1996). Bioethics for Clinicians: 1. Consent. CMAJ; 155(2): 177-180.
3. Etchells, Edward, et al. (1996). Bioethics for Clinicians: 2. Disclosure. CMAJ; 155(4): 387-391.
4. Etchells, Edward, et al. (1996). Bioethics for Clinicians: 3. Capacity. CMAJ; 155(6): 657-661.
5. Fan, Ruiping. (1997). Self determination vs. family determination: Two incommensurable measures of autonomy. Bioethics; 11: 309-322.
6. Hern, Eugene H. (1998). The difference that culture can make in end-of life decision-making. Cambridge Quarterly of Health Care Ethics; 7: 27-40.
7. Kaufert, Joseph M. and Putsch, Robert W. (1997). Communication through Interpreters in Healthcare: Ethcial Dilemmas Arising form Differences in Class, Culture, Language and Power. Journal of Clinical Ethics; 8(1): 71-87.
8. Macklin, Ruth. (1999) Against Relativism. Oxford University Press, New York.
9. Michel, Vicki. (1994). Factoring ethnic and racial differences into bioethics decision making. Generations; 18 (4): 23-27.
10. Muller, J. and Desmond, B. (1992). Ethical dilemmas in a cross cultural context-a Chinese example. Western Journal of Medicine; 157: 323-327.

Bioethics Week

PHEN would like to encourage all Albertans to participate in the first ever Bioethics Week, to be held throughout Alberta from February 12 to 18, 2001.

Your organization can participate in this initiative by hosting or sponsoring an activity. In order to assist with this, PHEN has created a Bioethics Week Activity Guide which offers a wide array of ideas for events, tips & checklists for planning and publicity as well as comprehensive information on resources you may need. The guide and promotional material will be sent out in early October.

This promises to be an exciting and groundbreaking week for the promotion of Bioethics in Alberta. Stay tuned for more information or contact PHEN for information on how you can get involved!

Announcements

PHEN Staff Notes:

• For the past year, PHEN has benefited from the services of Marika Warren, who served as Senior Research Assistant with the Network's Northern Alberta Office. Marika is moving on to do her PhD at the University of Toronto. Marika's achievements included drafting a module on Ethics and Physical Disability for the Network. PHEN also bids farewell to Speranza Dolgetta, who served as a Research Assistant with the Southern Alberta Office this summer. Speranza played a key role in the development of the Activity Guide and other promotional material for Bioethics Week.
• We thank Marika and Speranza for the contributions they have made to the Network's activities and wish them every success in the future.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.