1.Consent and refusal
13. Communitarian values in medical decision-making: Native Americans
Susan K. Palmer
An anesthesiologist approaches the bedside of a young Native American woman to complete a pre-anesthetic evaluation. The woman is scheduled for a lumpectomy and appears anxious. The anesthesiologist introduces herself and begins asking questions. “How long have you had diabetes? Do you measure your blood sugar at home? Why does it say here that you haven’t eaten for 48 hours?” The patient does not look at the anesthesiologist nor does she immediately reply to the series of questions. She seems to be looking around the room for someone else. Three people approach the bedside. The patient looks directly at them and seems relieved, but still does not answer the anesthesiologist’s questions. The three visitors stand quietly. The anesthesiologist begins again: “Have you had any surgery before today?” She is frustrated, not knowing to whom to address her questions, or when to expect answers.
There are more than 500 “tribal entities” in the US, with over 200 in Alaska alone. There are thought to be about three million Native Americans and Native Canadians. No more than 30%–40% of these individuals live on reservations or associated land trust areas.
The Indian Health Service (IHS) is a US governmental agency charged with providing preventive, curative, and community healthcare for US Native American populations throughout the US. Many Native Americans will be cared for outside of Indian Health Service (IHS) hospitals, and therefore may need care from anesthesiologists not employed by the IHS. Although most states have less than 2% of their population identified as Native Americans, some states have significant Native American populations, such as Alaska 19.0%, Arizona 5.7%, Montana 7.4%, New Mexico 10.5%, Oklahoma 11.4%, and South Dakota 9%.1 Anesthesiologists who practice in one of these states would be well served to acquaint themselves with the customs and cultural understandings that nearby Native Americans share. The cultural effects of Native American beliefs in the medical workplace serve to illustrate problems common to the care of patients whose cultural beliefs are significantly different from that of the traditional “healthcare” culture with regard to autonomy, beneficence and informed consent.
Native Americans have populated the North American continent for at least 10 000–20 000 years – indeed, some archeologists believe it has been much longer. There is ample evidence that the tribal cultures of North America were from early times advanced in their languages, kinship systems, sacred histories, and sophisticated methods of living in sustainable ways on the land. Native Americans should not be confused with depictions of pre-historic “early man” found in many museum dioramas, which are intended to illustrate very early use of animal skins for clothing, early possible social structures, group hunting, survival behaviors, and early forms of tool-making. Confusing Native Americans with African and European evidence of early humans does a distinct disservice to Native Americans, whose history is much more recent and whose cultures are far more sophisticated than that of early man before the development of cultural identities.
Principles of respect for autonomy, respect for community, and the principle of beneficence
Native American cultures are far more communitarian than mainstream American cultures. Communitarian cultures are based on the fundamental premise that the “community” is the most valued entity, with part of each individual’s worth being measured by the degree to which they are able to contribute to the community’s well-being. Individual members of a community have an obligation to put the community’s interests before their own personal interests. In such “utilitarian” value systems, the principle of “beneficence” may therefore be practiced less in the context of individual beneficence, than in one of beneficence to the community.
Competitive white American culture often assigns social status to individuals based on their accumulation of money and possessions. Native Americans, instead, often value their ability to distribute what abundance they have to make sure that no one in their community is without necessary food, shelter, and means to care for their families. These fundamentally different value systems may lead people to make quite decisions with regard to their healthcare.
Native American views on illness
There are over 550 federally recognized Native American tribes in the US. Defining what constitutes a “tribe” would be academically difficult, but we know in general that the requirements for a distinct tribal community include: (1) having a common homeland; (2) speaking a common language; (3) having an agreed kinship system; and (4) sharing a sacred history. It would be impossible to describe the tribal customs or beliefs regarding illness and healing for each of the hundreds of federally recognized “tribal entities.” There are, however, common themes among many tribes that are useful for anesthesiologists to appreciate when caring for Native American patients. What follows is a description of some features of a belief system surrounding illness and healing of one of the largest tribes in the US – the Navaho, or Dine.
Southwestern pueblo cultures, particularly the Navaho, value being in correct relationship with others in the community, with the Great Mystery, with other living creatures, with even with the features of the homeland landscapes which are thought to be part of the birthright of the tribal community. When a Navaho person becomes ill, the root cause of the illness is thought to be the loss of a “correct” relationship. Relationships must be in balance to avoid or terminate illness. Each tribal member must strive to maintain a correct relationship to other tribal members, the right relationship with spiritual forces in other life forms, and maintain respect and gratitude to the homeland earth and climate. To restore health or “beautiful” living, the sick person may want to consult a tribal elder or a tribal member with medicinal powers. Western medical treatments may also be needed. Western medicine can be respectfully combined with tribal beliefs about restoring “right relationships” to achieve successful health outcomes for Native Americans.
Respect for the tribal homeland and designating landforms and its local flora and fauna features as sacred is part of the interrelatedness which native cultures value. The earth is often spoken of as a “mother” who nourishes and cares for the people. Traditional creation stories in many native tribes reveal that a spiritual being, the Great Mystery, preceded and then created mankind. The earth, the sun, the forces of weather, the cardinal directions, and the “brotherness” of other living creatures make everyday interactions “sacred” activities. Natives developed sustainable relationships with the flora and fauna of their homelands because they knew that the existence of their community depended on this.
The recent worldwide attention to “sustainable” living has renewed interest in the tribal ways of Native Americans. They recognized and valued sustainable living thousands of years before the emergence of the current interest in conservation of resources, preservation of species, and the development of renewable resources.
Navajo culture and informed consent
An important way in which the differences between Western and Native American values in healthcare ethics can be illustrated is through the process of informed consent. Western medical ethics place great value in “authentic” or autonomous choices of patients. In order for choices to be truly autonomous, this value system holds that a patient must be sufficiently informed and able to choose without coercion. Such information includes the nature of the treatment, risks, chances of success or failure, and alternatives to the recommended treatment.
Traditional Navajo culture, on the other hand, holds that words can change reality. A discussion of bad events, or even the possibility of them, is unwelcome, since it may actually bring the unwanted outcomes to pass. The anesthesiologist may be faced with an ethical dilemma – respect the patient’s culture and withhold information out of cultural sensitivity, or fully inform the patient and reject their cultural values.
In such a dilemma, it is important to recognize that autonomy is not inextricably linked to information. In fact, patients can make completely authentic and autonomous choices by asking not to be informed, or by assigning the power over health care decisions to another, such as their relatives, or even the physician themselves. Furthermore, it is not the amount of information that is significant to autonomy, but rather what information the patient considers most important to their well-being. Therefore, we can respect autonomy, even if we do not have all of the objective information on the table, so long as we have respected the patient’s values with regard to how much and what kind of information they desire and need to feel comfortable with their health care decision. The easiest way to determine this is to ask the patient what is important to her in the context of her values, choices and culture.
Ethical responsibilities of anesthesiologists caring for Native American patients (or any patient with a cultural background different from their own)
Anesthesiologists share with all other physicians the duty to be respectful to patients and their families and to put the patient’s interests before their own. Learning about their culture and views on medical care is one way to demonstrate respect for our patients as individuals. Physicians are expected to act with sincere respect for our patients’ beliefs, especially when we do not share similar beliefs. It would be impossible to know the cultural etiquette of all other cultures. However, it would be possible for anesthesiologists to learn some of the predominant cultural beliefs and traditional ways of Native American patients or other ethnic groups who live in their area and are likely to fall under their care. All patients are benefited by the acknowledgment of their spiritual needs. Patients who are confident that their anesthesia care is personalized are likely to be more satisfied with their care.
Further, it can be argued that physicians have a duty to examine their own background cultural influences and work to avoid de-valuing the beliefs or lifeways of patients who have a completely different value system. Negative stereotypes of those who are different need examination and revision so as not to interfere with respectful and thorough medical care. Better medical care and outcomes occur for patients, and more job satisfaction results when anesthesiologists can sincerely respect their patients.
Why should an anesthesiologist be concerned about a patient’s cultural or spiritual preferences?
Apart from the humane aspect of concern for the comfort of others, scientific evidence supports the premise that a patient’s psychological state affects healing, immunity, and the course of disease. Psychoneuroimmunolgy is the name used for the 20-year-old field of scientific study that acknowledges the effects that a patient’s state of mind has on their neurological and immunological systems. Complex interactions between the immune system and the central nervous system, including the effects of positive and negative emotions on immunology and infection, have long been recognized and studied. Anesthesiologists have also long known that it is better to anesthetize a patient who is already calm, than to rapidly induce general anesthesia in a patient who is distraught or nearly out of control. Pre-medication can produce the picture of calmness, but may or may not produce actual psychological calm. The old saying that “patients wake up exactly as they go to sleep,” is indicative of the fact that general anesthesia interrupts, but does not resolve, strong emotions. Every anesthesiologist has probably had the experience of putting a weeping patient to sleep and have them wake to continue their crying.
Cardiac rhythm, blood pressure, resistance to infection, secretion of stress hormones, and activation of endothelial reactivity are just some of the things we now know are related to patients’ emotional state during emergence from general anesthesia. The phenomenon of wakefulness during apparent general anesthesia, for example, is thought to be correlated with the patient’s pre-induction state of arousal.
Learning more about Native American beliefs and healthcare
A list of valuable readings regarding Native American culture and healthcare follows this chapter. Probably the single most helpful book for physicians is The Scalpel and the Silver Bear, by Lori Alviso Alvord. It is the story of a Navaho woman raised with traditional tribal values, who decides to pursue higher education and eventually becomes a general surgeon. Her journey away from tribal and reservation life and into the general American culture and later adoption of the prejudices which are a normal part of medical surgical training makes it clear what stresses may be affecting any of our Native American patients. Dr. Alvord’s journey also illustrates a way of understanding how the strengths of Native American spiritual understandings and mainstream American views of illness and healing can be combined in a synergistic way.
Navaho people have a concept called “Hozhone haazdlii”, Walking in Beauty, but it isn’t the beauty that most people think of. Beauty to Navahos means living in balance and harmony with yourself – mind, body, spirit – and having the right relationships with your family, community, the animal world, the environment – earth, air, and water – our planet and universe.
Lori Arviso Alvord, M.D.
The patient and her family were enrolled members of the Navaho nation. This family valued tribal support, restraint in conversation, and honored the “old ways.” Their understanding of disease and its treatment included respect for their tribal beliefs about the origin of disease.
Like many physicians, anesthesiologists are often unaware of the social effects and implications of their approach to patients. For example, in the interest of efficiency, anesthesiologists often begin their conversations with patients by asking questions. This has become commonplace in the hurried atmosphere of a healthcare setting, but would be considered rude in normal social situations among even non-Native Americans. It may be especially offensive and anxiety provoking for patients who come from cultures that value restraint in conversation.
Most patients, including Native Americans, appreciate it when their physicians begin a conversation by introducing themselves first, and then stating what their role will be in the patient’s care. Many cultures, including those of Native Americans, prefer that the next part of the conversation includes the recognition of the patient as a unique person with important relationships. Recognizing and speaking to the patient’s bedside relatives and friends is a first step in showing that the physician understands that the patient is part of an important social network, and that they and their family will be cared for in a respectful way.
The anesthesiologist should try to identify very early in the pre-anesthetic conversation what effect her conversation is having on the patient and her family. Asking the patient for guidance as to what information is important to them can be helpful when physician and patient values/beliefs diverge. Instead of the routine pre-operative questions, one could add a question such as “What else should I know about you in order to provide comfortable care for you? Is there anything which you are concerned about in the treatment I have recommended for you?”
It is important to recognize that, for some cultures, the nature and quantity of information discussed during consent for medical care may vary. Patients have autonomous rights to limit the amount of specific information they wish to receive, and/or to designate someone other than themselves to receive information and make decisions for them. When a patient desires limited risk disclosure, the anesthesiologist should document this as part of their informed consent discussion.
Some Native Americans may wish to carry symbolic items with them during anesthesia and surgery. Provisions for safe accompaniment of symbolic items can usually be made to accommodate the patient’s wishes, just as most American hospitals and most physicians allow patients and their family/pastor to complete traditional Christian prayers before whisking them off to the OR. Making time and space for tribal members and ceremonies is in the same category of respect for the healing power of Native American tribal customs.
• Native Americans have views on health or strong spiritual beliefs that should be acknowledged, respected, and safely integrated into the plan for anesthesia care.
• Native Americans have sophisticated historical spiritual belief systems that should not be confused with our understandings about pre-historic early human social organization.
• Scientific research supports the connections between spiritual and mental states and the outcomes of stressful healthcare procedures.
• Verbalizing respect for the concerns and spiritual needs of our Native American patients and their families should be a normal part of ethical anesthesia care for these patients.
• Patients of all cultures have a right to determine how much and what type of information is essential to them in making healthcare decisions. Accordingly, they may choose to limit discussion of risks, or to designate someone else to make healthcare decisions for them.
• Anesthesiologists could benefit all their patients by beginning their conversation with an introduction of themselves and their role for the patient. Adjusting the tempo and intimacy of pre-operative questions may be necessary to accommodate social expectations and prevent anxiety for some of our patients.
1 Census Brief 2000. The American Indian and Alaska native popultion 2000. US Census Bureau, Washington DC. February 2002. http://www.census.gov/prod/2002pubs/c2kbr01–15.pdf.
Alvord, L.A. and Van Pelt, E.C. (1999). The Scalpel And The Silver Bear. The First Navaho Woman Surgeon Combines Western Medicine And Traditional Healing. New York: Bantam Books.
D’Souza, R. (2007). The importance of spirituality in medicine and its application to clinical practice. Med J Aust, 21, 186(10 Suppl): S57–9.
Fixico, D. (2003). The American Indian Mind in a Linear World. New York, NY: Routledge.
Hall, A. (2002). What the Navajo culture teaches us about informed consent. HEC Forum, 14(3), 241–6.
Kelly, L. and Brown, J. Listening to Native Patients. (2002). Can Fam Phys 48, 1645–52.
Mann, B.A. (2008). Make a Beautiful Way. The Wisdom of Native American Women. Lincoln, NE: University of Nebraska Press.
Martinez, D. (2009). Dakota Philosopher: Charles Eastman And American Indian Thought. St Paul, MN: Minnesota Historical Society Press.
McLaughlin, L.A. and Braun, K.L. (1998). Asian and pacific islander cultural values: considerations for health care decision making. Health and Soc Work, 23(2), 116–26.
Nerburn, K. (1999). The Wisdom of the Native Americans. Novato, CA: New World Library.
Turner, N.J. (2005). The Earth’s Blanket. Traditional Teachings For Sustainable Living. Seattle: University of Washington Press.
Utter, J. (2002). American Indians: Answers To Today’s Questions. 2nd edn. Norman, OK: University of Oklahoma Press.