The Cambridge Textbook of Bioethics

47 Aboriginal bioethics

Mr. A, a 70-year-old Aboriginal elder who speaks only Ojibway, is admitted to a tertiary care hospital for diagnostic investigation of possible prostate cancer. Initially, only a female interpreter is available, and she has difficulty translating the physician’s references to the penis while obtaining consent for cystoscopy. When asked to tell Mr. A that the procedure would aid in cancer diagnosis, she refuses to translate the concept of cancer directly and, instead, uses the word for “growth.” The patient responds that he does not fully understand the diagnostic test but trusts the interpreter and the urologist and agrees to sign the consent form. During cystoscopy, both his son and a male interpreter, are present to translate. Following the biopsy and other diagnostic tests, Mr. A, his son, the male interpreter, and the urologist meet. Addressing the son and the interpreter, the urologist explains that Mr. A has advanced cancer spreading to bone. When asked by the son about treatment, the urologist replies that any attempted curative treatment would probably cause more risk and discomfort than would pain relief and other palliative measures. The interpreter begins to translate the urologist’s summary, but his explanation of the diagnosis is interrupted by the son, who says that he will communicate directly with his father. He states that the interpreter should not have used the Ojibway word “manitoc,” which denotes cancer through the cultural metaphor of “being eaten from within,” and that direct reference to cancer and his father’s terminal prognosis will promote fear and pain. He adds that his father has given him responsibility to interpret and to act as his proxy decision maker. The son further opposes the physician’s attempt to communicate the prognosis directly to Mr. A, stating that direct references to death and dying may “bring death closer.” The urologist argues that Mr. A needs to understand his diagnosis and give informed consent for possible treatment or the more likely palliative measures. The son replies that he will not lie to his father but that he needs time to communicate with his father through a more gradual and indirect process. The physician and son finally agree that the son will involve other family members over the next 48 hours. The physician and family arrange to meet again in two days and, in the meantime, to hold a “sharing circle” (Table 47.1, below) in which patient, family members, and caregivers will discuss palliative care and answer Mr. A.’s questions.

Table 47.1. North American Aboriginal people and their culltures ^a

a Aboriginal categories based on definitions proposed by Pohl (2000, pp. 28–32) and on the Statistics Canada website (1996).

What is Aboriginal bioethics?

The literal translation of Aborigine is “the people who were here from the beginning,” which is not synonymous with “indigenous,” and referred to the Australian Aborigines. There are groups all over the rest of the word who are referred to as Aboriginal peoples and who have distinct cultures. This chapter is based on those in North America. Although philosophies and practices analogous to bioethics do exist in Aboriginal cultures, the concept of bioethics is not generally differentiated from the ethical values and frameworks for decision making that are applied in all dimensions of living. Accordingly, ethical values that may be held by Aboriginal people will be addressed rather than a formal, codified system of Aboriginal bioethics. Table 47.1 defines a number of Aboriginal terms that are used in this chapter.

A review of the literature revealed that little has been published on the subject of Aboriginal health ethics (Gariépy, 1999). In the scope of cultural bioethics, Aboriginal systems are unique in their respect for the visions and beliefs of the individual and concomitant respect for the community (Hultkrantz, 1987). Aboriginal values are frequently discounted by Western colonial culture. Primarily rooted in the context of oral history and culture, Aboriginal ethics are best understood as a process and not as the correct interpretation of a unified code (Gariépy 1999; Ong, 1982, pp. 57, 86, 145). In their approach to ethical decision making, Aboriginal cultures differ from religious and cultural groups that draw on scripture and textual foundations for their ethical beliefs and practices. Despite these challenges, common themes and the diversity within Aboriginal ethics may be highlighted. Research conducted with Aboriginal elders provides the basis for identifying widely held values in Aboriginal frameworks for decision making (Ellerby, 2005).

Themes in approaches to communication and caregiving

Some essential qualities of ethical approaches to communication and caregiving involving Aboriginal peoples are summarized in Table 47.2. Although these ethical values are important to understand and apply, examining specific applications of ethical care in detail is not as useful as developing a more generalized understanding of how to approach ethical decision making with Aboriginal people in actual clinical settings. Aboriginal ethical decisions are often situational and highly dependent on individual values and on the context of the family and community. In general, Aboriginal ethical values include the concepts of holism, pluralism, autonomy, community- or family-based decision making, and the maintenance of quality of life rather than the exclusive pursuit of a cure. Most Aboriginal belief systems also emphasize achieving balance and wellness within all domains of human life (e.g., mental, physical, emotional, and spiritual). Aboriginal North American cultures share some ethical practices, such as the need to respect the integrity of the human body after death (Hultkrantz, 1987; Gariépy, 1999). Spirituality and cultural understandings of death, loss and the existence of Spirit Beings often play a role in the bioethical decisions of Aboriginal patients and families (Gariépy, 1999). Acceptance is a common, deeply rooted aspect of Aboriginal relationships to death and the passage of time during illness (Hultkrantz, 1981 [pp. 11–28], 1989, 1992 [pp. 15–16, 164–8]; Deloria, 1993 [pp. 62–77, 165–84]). Maintaining quality of life is commonly seen as paramount to extending life. Simultaneously, life is to be preserved and should be pursued whenever meaningful quality can be maintained. Affirming the dignity of life is essential (Brant, 1990).

Table 47.2. Essential qualities of ethical approaches to communication and caregiving involving Aboriginal patients

Some Aboriginal people have a problem with advanced technology, and it is important to acknowledge this in treatment. Problems arise when a cultural heritage of nature-based medicine encounters biomedical treatment emphasizing technological interventions. Healthcare institutions such as urban teaching hospitals may be associated with a “culture of colonization,” emphasizing technological solutions. There are diverse perspectives in Aboriginal communities regarding the use of technologically advanced and aggressive treatments such as transplantation, dialysis, and mechanical ventilation. However, many Aboriginal people, particularly the young, may be open to and desirous of using the full range of medical technologies available.

Barriers

Ethical care of Aboriginal peoples may include the current emphasis in bioethics on the moral context of individual relationships in clinical interactions. However, this approach does not fully engage the broader structural context of barriers that impede access to care or interfere with healing processes. Barriers include language problems, lack of cultural competence among healthcare providers, problems of transportation and communication in service delivery to remote communities, and institutional discrimination.

Applications of the bioethical principles of autonomy, beneficence, and justice in contemporary relationships must recognize the historical context of power relationships between Aboriginal people and providers of health and social services. The dominant emphasis on respect for individual autonomy in bioethics may need to incorporate Aboriginal values emphasizing non-interference. The Aboriginal psychiatrist Clare Brant (1990) observed, “the ethic of non-interference is a behavioural norm of North America Native tribes that promotes positive interpersonal relations by discouraging coercion of any kind, be it physical, verbal or psychological.”

Approaches to guaranteeing autonomy in communication involving consent and truth telling must accommodate this value of avoiding coercion. Direct, unmediated communication of bad news involving terminal prognosis or risks of impending death may violate the values of some individuals and communities. Cultural and spiritual traditions, including those of Navajo people in the USA and Dene people in Canada, assert that speaking explicitly about terminal illness and death may hasten death (Carrese and Rhodes, 1995; Kaufert et al., 1999). Some families may, therefore, ask to be present to mediate communication of bad news and support the family. One potential way of recognizing alternative approaches to truth telling in consent may resemble Freedman’s (1993) concept of “offering truth.” This framework avoids “imposing truth” by allowing the person to define the level and explicitness of the information they require to interpret care options.

Emphasis on guaranteeing informed consent and minimizing risks to individuals in the decision-making process may be unduly influenced by historical relationships that discount Aboriginal values, which emphasize protection of the family and the community. In making consent decisions, Aboriginal patients and their families may balance the risks and benefits to the individual with the interests of the family and community. For example, a patient may defer to the wisdom of an elder or healer or elect to use a proxy decision maker from the family in signing consent agreements or advance directives (Kaufert et al., 1999).

In ethical decision making, power differences may be accentuated by language barriers among patients who are monolingual speakers of Aboriginal languages or who have limited fluency in English or French. In these situations, ethical communication should involve the use of trained Aboriginal health interpreters, who have competence in both biomedical terminology and Aboriginal concepts of health and healing.

Diversity and pluralism

Diversity and pluralism are essential dimensions of Aboriginal ethics. Aboriginal ethics emphasize a pluralistic perspective that accepts that a wide spectrum of values and perspectives may be held by family members. In allowing for the expression of a plural spectrum of values, autonomy among individual family members is emphasized and respected. Aboriginal cultures and communities are diverse, and therefore it is difficult to develop generalizations about values or decision-making practices. Across North America, for instance, and within individual states, provinces, and territories, there is a wide spectrum of cultural and language groups, and variations between individual Aboriginal communities and regional organizations. For example, Manitoba is home to Cree, Ojibway (Annishinabe), Métis, Inuit, Dene, and Dakota people. Despite some shared beliefs, each cultural group must be treated with respect and an understanding of inherent diversity.

In considering the diversity of beliefs among Aboriginal people, one needs to recognize the impact of Christianity on Aboriginal communities. In many communities and families, the introduction of Christianity increased the diversity of values influencing ethical decision making. In some cases, the result has been division and animosity between family and community members who hold traditional Aboriginal values and those who assert Christian values.

Why is Aboriginal bioethics important?

Population

The population of Aboriginal people who may benefit from culturally appropriate ethical decision making is growing. There are alternative ways to define the Aboriginal population. For instance, data from the 1996 Canadian census indicated that about 800 000 people identified themselves with one or more Aboriginal groups: North American Indian, Métis, or Inuit (Statistics Canada, 1996). The population includes about 41 000 who identified themselves as Inuit and about 210 000 as Métis. Approximately 44% of Aboriginal people live in urban areas (Royal Commission on Aboriginal Peoples, 1996). Of the more than 550 000 respondents who identified themselves as “North American Indian,” approximately 60% indicated that they were a member of a First Nation or Band or had treaty status as defined by the Indian Act of Canada (Statistics Canada, 1996; see Table 47.1). The ongoing transfer of control over health services to individual First Nations or Bands will mean that mandates to apply Aboriginal values in ethical decision making will be emphasized in primary and tertiary health programs.

Access to care

The importance of understanding Aboriginal perspectives on health ethics is often linked with differences in health status and utilization of health services. Lower health status and barriers to medical care access are engaged within the ethical context of distributive justice and equality. Research documenting the disproportionate burden of morbidity and mortality and high levels of health service utilization among Aboriginal people is often cited in medical literature. However, some Aboriginal health policy makers have recently emphasized that epidemiological comparisons do not express the importance of individual and community historical relationships or contemporary experiences of racism in residential schools, social welfare program, or the healthcare system (O’Neil et al., 1998). In addition, there are many culturally distinct practices among Aboriginal people that necessitate a unique ethic of care.

Equitable access to high-quality health services is a central focus for both rural and urban Aboriginal people. Because of the centrality of family in Aboriginal people’s experience of illness and treatment, and restrictions in the access of friends and family members, Aboriginal patients often feel isolated when in hospital. Aboriginal approaches to decision making commonly involve members of the extended family, and offering opportunities for family involvement should be considered a prerequisite of providing ethical and culturally appropriate services (Kaufert et al., 1999).

How should I approach Aboriginal bioethics in practice?

To understand Aboriginal health ethics in clinical practice, several fundamental dimensions need to be recognized. Healthcare providers must recognize the risks of applying stereotyped values and spiritual beliefs, as well as the futility of attempting to develop generalized ethical formulas for communicating with Aboriginal patients. Plural belief systems and variation among individuals preclude the direct application of knowledge in reconciling Aboriginal beliefs with biomedical and bioethical criteria.

Aboriginal bioethics can best be viewed as an interpersonal process. Immediate and clearly defined approaches should not be expected. Aboriginal bioethical positions are largely situational; adopting a case-specific approach is, therefore, important. Healthcare providers working with Aboriginal people must first try to acknowledge the importance of autonomy, the centrality of family to health and identity, the diversity in beliefs and practices among Aboriginal people, and the value of developing and maintaining personal and emotionally sincere relationships with patients. Provider ethics emphasizing the maintenance of professional distance may contravene the Aboriginal affirmation of the power of human relationships in the healing process. Trust is paramount.

Healthcare providers might consider adopting the role of learner, allowing Aboriginal elders and each patient to lead in the articulation of the ethical principles guiding care. Not only is the process of family consultation critical in making decisions about acute and emergency care, but it is also an important dimension of day-to-day primary care. Healthcare providers should recognize that biomedical values may not always be reconcilable with Aboriginal values, despite improved communication methods or increased cross-cultural awareness.

If healthcare providers ignore differences related to Aboriginal culture, they will not be able to understand the wide spectrum of beliefs and attitudes that Aboriginal people draw on in making ethical decisions. For example, although certain values such as respect for dignity, non-interference, sharing and the importance of family and community are widespread, other beliefs such as those about truth telling may differ, even among members of the same family. Healthcare providers cannot take Aboriginal beliefs for granted and need to explore these carefully with each person. As well as respecting beliefs, healthcare providers need to respect the decisions of patients and families who request involvement of Aboriginal healers, elders, and medicine people in their care (see Table 47.2).

The future of ethics and Aboriginal people

Aboriginal cultures can be identified as premodern in the sense that there is no separation between the self and the universe; between self, family, and community; or between mind, body, and spirit. Therefore, healing is not possible without spirituality, nor without relationships to family and community, and to the cosmos. Restoring these values and beliefs can balance biomedical treatments and lead to healing of the person as well as cure of disease.

Recent Western history has emphasized scientific and technological advances at the expense of, and exclusion of, spirituality. The consequences of this have been traumatic for many traditional Aboriginal people. When in need of healthcare, many Aboriginal people view healthcare institutions as dehumanizing: they experience mind–body separation and separation from family and community, and they are asked to participate in ethical decision making guided by biomedical values.

The postmodern paradigm, which questions the existence of universal norms, scientific truth, and “superior” cultures, presents an interesting challenge to modern medicine and its claims of exclusive efficacy in achieving cure. The current popularity of alternative healing methods, such as Aboriginal medicine, and the thirst for spiritual values are but two indications of a postmodern culture that is more inclusive and holistic and thus more akin to traditional Aboriginal culture.

Aboriginal ethics is an important area of study because of its potential to make exceptional contributions to more generalized understandings of bioethical practice in increasingly diverse clinical and sociocultural environments. The emphasis in Aboriginal ethics on pluralism, diversity, and the maintenance of a high level of respect for individuality challenges Western biomedical paradigms to adjust to become more responsive and dynamic in their approach to ethical decision making. By incorporating a model of ethics that acknowledges pluralism and cultural context, medicine has the opportunity to develop models of ethics and care that are relevant to the cross-cultural treatment of the whole person (Dacher, 1996).

The case

The young female interpreter, out of respect for Mr. A’s age, sex, and status, cannot discuss the urological procedure with him directly. However, by adhering to Ojibway beliefs, she does use a generalized term to refer to cancer and thus avoids contravening the belief that “speaking the future may bring it to pass.” Although the male interpreter is able to use anatomic language without disrespect, Mr. A’s son feels that explicit truth telling about cancer is against traditional practice. In giving his son permission to be his interpreter and to be a proxy decision maker, Mr. A is not undermining his own personal autonomy and instead is demonstrating shared family and communal responsibility in decision making. This is in contrast to the usual Western view of autonomy as conceding supremacy to the individual rather than to anyone else in making decisions. Only recently has the importance of relationships, especially as propounded in feminist ethics, been given a place in bioethics. Though it is worrisome for some that a cognitively competent individual is not being involved in making decisions about his future, Mr. A has chosen to delegate responsibility to his son. Given the principle of non-interference among Aboriginal people, the father’s values and beliefs may differ considerably from those of his family. An important task of the interpreter and caregivers is to determine whether such differences are present. Aboriginal language interpreters are, therefore, necessary not just for translation but also to bring cultural awareness and sensitivity to interactions between patients, family members, and healthcare providers. If differences in values are present, the physician may need to “offer truth” to ensure that Mr. A’s views are respected. For example, Mr. A might be asked, “Are you the sort of person who likes to know all available information, or are you happy for your son to make decisions for you?” In this case, it is reasonable that the father is not immediately told about his prognosis, since curative treatment is not being recommended. By being given extra time and a cultural medical treatment (i.e., a sharing circle in which caregivers, family, and the patient participate), Mr. A achieves balance between his diagnosis, the biomedical view, and his spiritual beliefs in a culturally appropriate manner. Following the sharing circle and a family meeting, the son, the urologist, and the interpreter meet with Mr. A, his wife, and two of his other children. After this process of family consultation and gradual and prolonged truth telling by the family, Mr. A understands his diagnosis and the implications of metastatic cancer. Together with his family, he consents to palliative care, including pain control and palliative radiation.