Are there references for discussing or implementing code status (do not resuscitate/allow natural death) in Navajo or Hopi communities?

Submitted by Elizabeth Clark, MD, Whiteriver USPHS IHS Hospital

Response by Carol Howe, MD, MLS

There is little written on code status and palliative care in American Indian communities as a whole, significantly less which focuses specifically on the Navajo and nothing that I could find which specifically addresses Hopi concerns.

Hepburn and Reed (1995) note that  [at the time of their writing, 1995,] “the literature is practically mute on end-of life decision making” (p.98).  Their article, “Ethical and Clinical Issues with Native-American Elders: End-of Life Decision Making” is divided into a review of the literature followed by a report of their own qualitative research in which they conducted  “a dozen interviews with health-care workers involved with a number of different groups (including Navaho [sic], Mountain and Southern Ute, Chippewa, Pueblos, and Apache)” (p.105). In these interviews they focused on “four key concepts related to end-of-life decision-making: autonomy, advance directives, competence, and surrogate decision-making” (p. 104). They conclude with some basic guidelines for clinicians.

Throughout the article, the authors stress the tremendous diversity that exists between tribes and that although some common themes may emerge when cultural values are compared to the dominant culture—great care must be made not to generalize.  Specifically, they discuss the fact that there is, among Native Americans, a “perception that time is circular, rather than linear,” and that

a cycle of birth, life, and death is fundamental in nature and requires no manipulation or anticipation. With some exceptions, this sense of the circularity of time makes talking about death relatively easy; however, among some groups (such as the Navaho [sic]), belief is strong that talking about death may precipitate it and therefore should be avoided.  (p.100)

This last point emerges in every article that touches even tangentially on issues of death and dying within Navajo communities.  It is mentioned by Melvina McCabe in her article, “Patient Self-Determination Act: A Native American (Navajo) Perspective,” and forms the crux of Taylor’s 2004 article in the Journal of Social Philosophy, “Autonomy and Informed Consent on the Navajo Reservation.”  In this article he discusses, at great length the Catch-22 that

the traditional Navajo ask that their healthcare providers “Doo’ajiniadah” (approximately, “don’t talk negatively!”). However, if a healthcare provider honors her Navajo patients’ Doo’ajiniadah request, these patients will be unable to give their informed consent to their treatment, for they will not receive the information that they need to make informed decisions. The traditional Navajo also refuse to participate in the discussions concerning advance directives that are mandated by the PSDA, for they believe that talking about the possibility that they will become terminally ill and/or in a persistent unconscious state will either cause them to suffer this fate or else make it more likely that they will. (p508)

Taylor presents Ruth Macklin’s solution to this dilemma primarily for the purpose of disputing it.  Macklin, whose extensive writings I did not read, apparently suggests that:

rather than disclosing the risks of their prospective treatments to those Navajo patients who hold the traditional beliefs concerning causation, this information would be withheld from them, on the grounds that, given their belief system, a ‘lower’ standard of informed consent should apply to them. Macklin argues that both concern for the autonomy of the Navajo patient and concern for his well-being support this approach to the problem. ... (p.509)

Taylor offers the alternative philosophical argument that “a Navajo might not decide to go untreated if he is also ‘thinking negatively’ about remaining untreated” (p.511). He offers the following alternative solution:

The traditional Navajo patient should be asked if he wishes his healthcare provider to withhold information from him about the risks of his treatment options. This will enable him autonomously to decide if he wishes to avoid the ‘negative thinking’ that he might otherwise engage in, and which might lead both to the diminution of his mental well being as well as his physical well being (if he thereby refuses treatment that he would be better off pursuing). [pp. 513-4]

Taylor concludes by arguing that this surrender of some degree of autonomy, an ethical principle which is held in very high regard by Navajos, can be justified if one views autonomy as instrumentally valuable rather than intrinsically valuable. The convolutions of this philosophical article reflect the conceptual and cultural complexities involved in approaching the subject death and dying from a medical model in American Indian communities.

In general Taylor’s suggestions seem more suitable for true informed consent of elective procedures than for considerations of DNR orders or arrangements for palliative care.  This may actually be useful for, as Hepburn & Reed (1995) found in their series of interviews, there was a strong “distinction between end-of-life decisions made in advance of a life-threatening situation and those made in the face of such a situation. The former presented considerable difficulty and were variably obtainable; the latter were typically accessible” (p.105).  With regard to making true end of life decisions, the authors found that patients and their families “accepted their situation and impending death as something to be expected and unavoidable. Their decisions, in these circumstances, to be in harmony with the larger cycles of life were taken matter of factly and were not seen as great struggles” (p.105). Along these lines, Kitzes and Berger (2004) note:

Many families are unaware that the prevailing Western model for end-of-life health care applies life-prolonging efforts unless specific alternate plans are made. The IHS, similar to most private health care systems and emergency medical systems in the United States, practices automatic activation of cardiopulmonary resuscitation (CPR) therapy, regardless of a patient’s disease state, unless a documented advanced directive is available. Yet for many American Indian families and their clinical providers, the legal requirements for advance directives are intrusive and insensitive. (p. 836)

…bringing us back to our original conundrum:

For many AI/AN individuals the premature discussion of future, untoward events is believed to lead to their occurrence. Even experienced clinicians have difficulty knowing when and how to approach families to discuss care beyond cure, DNR decisions, organ donations, and autopsy. Within the privacy of extended family meetings, these issues are often considered only ‘when the time comes.’ (p. 836)

Finally, several of the authors conclude with suggestions and guidelines, which, though vague, can be helpful. The common denominator of these suggestions is the need to be flexible.  Protocols cannot be overly rigid—either in terms of who on staff actually obtains the advance directive, or which family member it is received from. “Fixed procedures (for instance, it is the role of the nurse or the social worker to get patients’ advance directives) and protocols (only signed and witnessed forms can be acted on) many not be successful and may create a barrier to ascertaining the patients’ true wishes” (Hepburn & Reed, 1995, p.107).  “…[T]he family group will present itself in its own shape, and the clinician should not attempt to prescribe or proscribe membership” (p.109).

Occasionally communications must be indirect. Hepburn & Reed describe a situation in which a patient spoke of the care a relative received several years back and it was only after a period of time that the clinicians were able to recognize that-- in her manner of speaking about that care—the patient was signaling her own wish to be treated in a similar fashion.  Communications may occur over prolonged period of time and take forms not immediately recognizable by Anglo practitioners.

Clinicians who are not Native Americans reported leaving conversations with patients or with patients and families thinking that nothing of substance had occurred only to be told by a Native-American participant that an important decision had been reached. Aside from the issue of needing a language interpreter when the elder’s language is not English or when she or he is more comfortable in a native language, clinical encounters with elders may require cultural interpreters (p. 109).

Hampton (2005) suggests: “Trained community health representatives who know the family and their culture are ideal for interpreting those end-of life issues” (p.39).

There is clearly no universal advance directives protocol that can be easily retrofitted to American Indian communities. How the need to remain extremely flexible to maintain cultural respect and sensitivity conforms to the simultaneous trends within American medicine to try to standardize care, meet accreditation needs and protect clinicians from liability is one of several larger questions which emerges.

References

Finke, B., Bowannie, T., & Kitzes, J. (2004). Palliative care in the pueblo of Zuni. Journal of palliative medicine, 7(1), 135-143.

Hampton, J. W. (2005). End-of-life issues for American Indians: A commentary. Journal of cancer education : the official journal of the American Association for Cancer Education, 20(1 Suppl), 37-40.

Hepburn, K., & Reed, R. (1995). Ethical and clinical issues with Native American elders. end-of-life decision making. Clinics in geriatric medicine, 11(1), 97-111.

Kitzes, J. (2001) Talking Circle: Palliative Care and End of Life Care for American Indian and Alaska Native Communities. [Electronic version]. IHS Primary Care Provider 26 (5), 73-74.

Kitzes, J., & Berger, L. (2004). End-of-life issues for American Indians/Alaska Natives: Insights from one Indian health service area. Journal of palliative medicine, 7(6), 830-838.

McCabe, M. (1994). Patient self-determination act: A Native American (Navajo) perspective. Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees, 3(3), 419-421.

Taylor, J. S. (2004). Autonomy and informed consent on the Navajo reservation. Journal of social philosophy, 35(4), 506-516.