Práticas alternativas artigo

206 S e m i n a r s in Onoology Nursing, Vol 17, No 3 (August), 2001: pp 206-219

OBJECTIVE:

To explain challenges Native

American cancer patients experi.

ence throughout the congnuum of

¢oArlcer care..

DATA SOURCE:

Preliminary findings from the Na-

tive American ~ Sur~rivors

Support Network, summaries

from focus g~ou~ ~th Naave A ~ n cancer sur~vors, and

literature review.

CONCLUSIONS:

Cultural m~d fami ly issues are

diverse and q~ect cancer care

si tuation in m a n y different ways.

IMPblCATION$ FOR NUlkSlNG PRACTICE:

oncoiogy nurse needs m un-

derstand and respect the dit~rs~, among Native A ~ n cancer

patients and to help the patient

and ~ f ind ways to allow

for the incMsion of family mem-

bers, spiria~ity, and traditional

Indian medicine within the West-

era medical mumnem model.

From the Noxive A ~ n Cancer Re- search,, and the Native A m ~ Center of Excellence, School of Medicine at the Un~. versity of Washington, Seattle.

Linda Burhansstlpanov, MSPH, DrPH, CHES: Execun've D/rector, Native 2oneri. can Carmer Research, Pine, CO.

Walter Hollow, biD: Dirauor of the Native ~ C , m ~ r o f ~ & ~ h o a 4 M , ~ icine ~ 4 W ~ S m a k WA

Supported in part by the National Su- san (3. Komen Breast Cancer Foundaaon~ Califorma Comnmnity Foundation (CC~ anmt No. 99-~29), and ~partmen~ of De fens, (DAMD17- Og- I-93 J O) and Native American Cancer Iratiagve~

Address repvirg reauests to IAnda Burhansstipanov, MSPIt, DrPH, CHES, Nat'i~ ~ Cancer R ~ r c h , 3022 8 Nova Rd, t~n¢. CO 80470-7830.

t : x

~ © 2001by W~ ~ C~npany 0 7 4 9 . 2 ~ 1 / 0 1 / 1 7 ~ . 0 ( 1 f f 1 dok l O 3 053/~¢~ 25950

NATIVE AMERICAN CULTURAL

ASPECTS OF ONCOLOGY

NURSING CARE

L I N D A B U R H A N S S T I P A N O V AND W A L T E R H O L L O W

O NCOLOGY nurses work in diverse settings and the likelihood of encountering an American In- dian or Alaska Native (also referred to as Native Americans or indigenous Natives in this article) cancer patient sometime during one's career is

increasing. This increase is due in part to Native people's life expectancy increasing long enough to develop cancer and to the growing numbers of Native people who have medical insurance and thus have access to quality cancer care.

American Indians (which includes all tribes and clans of indigenous Native peoples of the continental United States) and Alaska Natives (which includes all tribes and clans of indigenous natives of Alaska) are the smallest racial group in the United States. Approximately 1.9 million people (0.8% of the US population) self-identified as American Indians and Alaska Natives on the 1990 US census. 1 American Indians and Alaska Natives comprise over 554 federally recognized and diverse groups of indigenous popu- lations with distinct cultural backgrounds. Contrary to popular opinion, the 1990 census indicates that only 19.8% of all American Indians live on federal reservations and over 60% of the population reside in urban areas. In 1989, twice as many American Indians and Alaska Natives (30.9%) as the total population of the United States (13.1%) lived at or below poverty level. The percent of whites living at or below poverty level in 1989 was 9.8 %. The median family income in 1989 for indigenous peoples was $20,025. The white median family income was $31,435 in 1989. Similar to other Native American groups, the socioeconomic con- ditions of Alaska Natives are poor. In 1980, approximately one fourth of Alaska Native families lived below poverty level.

N A T I V E A M E R I C A N CULTURE 207

Note that tribal affiliations (eg, Cherokee, Oneida, Mescalero Apache) typically are not used in this article in compliance with tribal and Indian Health Service (IHS) recommendations that such specification not be used in publications. Also of note is that Native cancer patients who have insurance experience fewer challenges than do those who use tribal, IHS-contracted health services (CHS). But Native patients, regardless of insurance, display a broad range of being very traditional to being comfortable in both Native or Western society.

"Quality care" in this article refers to complying with treatment protocols as specified within the National Cancer Institute Physician Data Query. Physician Data Query protocols are based on cancer tumor staging and are accessible through the internet (http://www.nci.nih.gov, http://cancernet. nci.nih.gov/pdq.html, [email protected]. gov).

ACCESS TO QUALITY CANCER CARE

K ramer a explains that treatment and adher- ence to treatment plans are affected by such

social factors as access to health care systems, institutionalized racism, poverty, and the struc- ture of social services. Although cancer incidence and mortality rates are lower among American Indians living in Arizona and New Mexico in comparison with Natives living in other regions of the country, even there, the "burden of cancer" ap- pears to be high (eg, the temporary deterioration of the patient's quality of life) during treatment and recovery. Recovery from cancer treatment takes time and support. 3

The National Native American Breast Cancer Survivors' Support Network (hereafter referred to as the Native Cancer Survivors Network) is a program supported by the National Susan G. Komen Breast Cancer Foundation (1997-2001), Califor- nia Community Foundation (1999-2001), and the Department of Defense (2000-2002). The purpose of this project is to improve survival from breast cancer and quality of life after being diagnosed with breast cancer for both the patient and loved ones of the cancer patient. The intended population is Native American breast cancer patients, both genders, ages 20 and older, living anywhere on the North American continent. Preliminary findings include documentation that Native breast cancer survivors are not receiving quality care.

Less than one third have access to insurance (and thus access to improved quality of care), and standard protocols used with other survivors are ineffective with Native cancer survivors. 8elected information about the Native Cancer Survivors Network is available on the internet (http:// members.aol.eom.natamcan). Preliminary findings from the Native Cancer Survivors Network will be published beginning in 2001.

Access to quality cancer care varies greatly among American Indians and Alaska Natives, in part due to health insurance, geographic resi- dence, and cultural issues. New Mexico is generally considered to have among the higher quality databases for American Indians and to have better access to health and cancer care services than do Natives living in regions other than New Mexico. Common data errors, such as racial miselassifiea- tion, coding errors, and collapsing racial eatego- ties into "Other," have been published else- where. 4-11 New Mexico's Tumor Registry has implemented data collection and recording training that results in few of these data errors.

However, Taylor-Wilson et all2 conducted a study to identify differences in (1) breast conserving surgery versus masteetomy, and (2) time to first cancer-directed surgery for American Indian and Hispanic women compared with white women living in New Mexico and Arizona. Data from the New Mexico Tumor Registry, a participant in the National Caneer Institute's Surveillance, Epidemi- ology and End-Results program, linked by the National Cancer Institute to Medicare claims records, were used to identify American Indian, Hispanic and white women diagnosed with a uni- lateral, single, primary, breast cancer between 1987 and 1996. Medicare inpatient summary records (1986-1998) and Medieare physician claims (1991-1998) were used to determine major treatment modalities including breast-conserving surgery, masteetomy, chemotherapy, and radiation received within five different time intervals after diagnosis. The study found significant dispar- ities in time to first cancer-directed surgery for American Indian women for every interval exam- ined, eompared with to white women. Controlling for age, stage, grade, and census-tract poverty- level, American Indian women were four times more likely to receive their first caneer-directed surgery more than 6 months (186 days) after diagnosis (Adjusted odds ratio = 4.0, 95% eonfi-

208 B U R H A N S S T I P A N O V A N D H O L L O W

dence interval: 1.32-11.9).* There were no statis- tically significant differenees between Hispanic and white women with respeet to time to treatment. Preliminary data (interviews with more than 100 Native Ameriean breast eaneer patients) collected for the Native Caneer Survivors Network are consistent to Taylor-Wilson's study findings. There are multiple possible explanations for these differences in cancer care.

Cancer primarily affects people of all ethnieities as they grow older (over age 40). Among the reasons why cancer is experienced differently by older Natives in comparison with older people of other racial or ethnic groups is partially due to the health care system frequently accessed by Amer- ican Indians arid Alaska Natives as well as other cultural perspeetives. Approximately one third or less of older American Indians and Alaska Natives have private medical insurance coverage. 2,13,14 The majority have no insurance, but many are eligible for Medicare or receive health services from tribal health programs or IHS. Having health insurance significantly influences the quality of cancer care. For example, preliminary data from the Native Survivors Network found that for those without health insurance (2/3 of the study population), most used tribal or IHS CHS. None of the latter group had access to a second opinion for their diagnosis. Only one of the women who used IHS CHS was offered breast-conserving surgery (lumpeetomy with radiation) and none were offered tamoxifen. Only one woman had benefit of sentinel node surgery. In addition, Native breast cancer patients from one geographic region have not received quality cancer care; no established treatment protocols were followed; no follow-up recommendations were sent back to the patients' home village; and no annual cheek-ups were doe-

'"Odds ratio is the ratio of the n u m b e r of Amer i can Indian women having surgery wi thin 6 m o n t h s of diagnosis versus the n u m b e r of non -Amer i can Indian w o m e n having surgery within 6 m o n t h s of diagnosis. The odds ratio expresses the relationship be tween observat ion tha t suppor t s a hypo thes i s and observat ion tha t eont rad ie t the hypothes is . W hen the OR = 1, there is no difference in observat ions tha t suppor t and contra- dict the hypothes is . Odds ratios tha t exceed 1 express si tua- t ions suppor t ing the hypothes is , whereas , less t han 1 does no t suppor t the hypothes is . Odds ratio clarifies bo th the s t rength and the direct ion of an associat ion. If an odds ratio is over 1, it is more likely to oeeur.

Conf idence interval expresses confidence in es t ima tes of odds ratios. A 95% conf idenee interval indicates a more precise es t imate t han a 90% eonf idenee interval.

umented with medical health care records. The average interval from the time of diagnosis (ie, biopsy) to initiation of treatment was 3 to 6 months. Interviews with 20 Native American cancer survivors of both genders, of cancer sites other than the breast (eg, lymphoma, prostate, colon) had similar findings for this region of the country.

CANCER CARE THROUGH PERSONAL

HEALTH INSURANCE

O f the Native population who have some type of personal health insurance, only a minority

have eatastrophie health insurance, which requires very high deductibles (eg, $500). Cata- strophic health insurance typically does not in- elude early deteetion services (eg, eaneer screening). Thus, those with catastrophic insurance are less likely to participate in screening. The majority of health insurance plans have co- payments of $10 to $20 per visit, which require that the individual have some eash on hand and may contribute to low eaneer care partieipation.

CANCER CARE THROUGH INDIAN HEALTH

SERVICES CONTRACTED HEALTH SERVICES

I ndian Health Services directly subsidizes health .care services through contracts with private

providers (formally known as Contract Health Ser- vices), particularly for specialized services and other services not available in IHS direct care facilities or tribally operated clinics, is For example, the IHS has no oneologists or similar types of cancer specialists on staff. Cancer diagnosis and treatment are conducted via the IHS CHS. The official federal policy regarding the IHS CHS is to place Indian patients on a "priority list" to transport them for follow-up services as monies are available. However, the United States Congress determines how much money is allocated to the IHS CHS budget and IHS policies are restricted by the availability of those monies. This creates an incredibly frustrating situation for both providers and patients. The IHS CHS requires that the provider place the patient on a priority list to receive recommended follow-up diagnosis and treatment and/or care. As monies are available, the Na- tive American patients are provided travel and ac- commodations for themselves alone to the specified health care setting that has a contract with IHS to provide the recommended tests and procedures.

N A T I V E A M E R I C A N C U L T U R E 209

The frustration from this system is that many Amer- ican Indian elders wait on priority lists for months at a time until their priority is raised to a level that allows them aeeess to appropriate follow-up cancer care.

Since the 1990s, more and more tribes are assum- ing control of the delivery of health care services from the IHS (this is called "compacting"). However, even for those tribes who have compacted, for economic reasons the cancer care services typically remain available through IHS CHS.

Early diagnosis and treatment is essential for cancer survival. Interviews with tribal health clinic personnel conducted during the spring and summer of 2000 indicated that IHS CHS frequently have insufficient funds during the latter part of the fiscal year and may be responsible for delays in cancer patients being referred to follow-up care. Thus, during those times of the year, the limited CHS monies are reserved for life-and- death emergency services, and referral for diagnostic tests or cancer treatment may or may not be ranked as a priority by the individual who processes CHS requests. The provider, whether paid by the tribe or by IHS, may have little or no influence over this referral for timely follow-up care. This delay in obtaining access to diagnostic and treatment services is among one of the reasons for the poor survival from cancer experienced by American Indians and Alaska Natives.

GEOGRAPHIC ISOLATION AND

CANCER TREATMENT

T hrough interviews with Native American cancer patients, some of the explanation for the

delay from time of diagnosis to initiation of treatment is because of geographic location. For example, when cancer patients live in geographically remote regions of the country (the Alaska bush or isolated reservations), prior to traveling from the home to the cancer treatment facility, typically several hundreds of miles away, the cancer patient needs to make arrangements for care of the family. When the patient travels to the medical facility, it is rarely known whether the individual will need to be gone for 3 days or 3 months. Thus, the cancer patient usually asks family and neighbors to help care for the family members while they are away. In one family, the mother of three young children was gone for 6 months. The village neighbors collectively eared for the children: one week

with one family, then the children were moved to another family for daily care and slowly rotated among the families. When the patient was allowed to return home, the children panicked any time they drove in the vicinity of the airport because that was the place that "took mommy away." The woman was scheduled to return to the Alaska Native Medical Center (over 500 miles away) for another round of chemotherapy, but she was (1) unwilling to leave her children for the anticipated multiple months of treatment because of their emotional distress caused by her absence; (2) unwilling to ask her family and neighbors to continue to economically and emotionally provide daily care for her children; (3) unable to have her spouse "miss" the hunting and fishing season which provides subsistence for the rest of the year (Alaska Natives living in the bush rely on hunting and fishing for their food supply throughout the year); (4) unwilling to lose her job (her employer informed her that he had to hire someone else to replace her because she was likely to be gone for a long period of time and unwell when she returned to the village); (5) unwilling to endure the loneli- ness (no family emotional or spiritual support while in Anchorage for her treatment) and, (6) her personal belief that she had a poor prognosis for cancer cure because she experienced so many debilitating side effects from the first round of chemotherapy following her surgery. Subse- quently, she delayed initiation of the recommended continued cancer treatment.

This situation of long intervals from diagnosis to initiation of recommended treatment for cancer patients who live in geographically remote regions is the same for other ethnicities. This is not a culturally specific, but rather a geographically specific partial explanation for the long interval from initiation of recommended cancer treatment. Alaska Natives who live in the bush have an ad- vantage over non-Natives living in the same region in that they do have access to cancer care through the Alaska Native Medical Center (non-Natives living in the bush must have independent health insurance, which few do).

CULTURAL ISSUES AND CANCER TREATMENT

I nterviews with Native cancer patients reveal .diverse cultural issues related to cancer treat-

ment. These issues vary greatly among tribal nations and some contribute and others interfere

210 B U R H A N S S T I P A N O V AND H O L L O W

with timely cancer care. The notions of "silent disease," preventive medicine, and specialized medicine are foreign among many native communities. 2 Ontology nurses have access to selected information about large tribes, such as the La- kota .6 and selected southwestern tribes, 17-21 but even within these tribes there is great diversity in cultural aspects related to their perception of cancer and cancer treatment. According to many Native cancer patients, oneology nurses typically are among the most reeeptive of their cancer care providers to be respectful of their cultural mores.

For example, many Native cancer patients are likely to bring artifacts into the hospital room, including contemporary religious articles like crosses and traditional medicine bags, sage, cedar, mussel shells, feathers, hair, stones, sweet grass, corn pollen, leather items, stones, bones, sea shells, beaded art work, cloth, jewelry, and so on. Other items are similar to cancer patients of other ethnieities: bibles, crosses, religious articles, books of inspiration, and handeraft work. The former group of items are commonly arranged on decorative cloth on a night stand within arms reach of the patient. Oneology nurses have been helpful in educating the maintenance staff to not dust or disturb the cultural artifacts. In one setting the physician insisted that the artifacts were not sterile and needed to be removed from the inten- sive care unit. The nurse asked permission of the patient and under his direction, arranged all of the pieces within a large plastic zip-locked bag. The patient was not pleased with the hospital's staff need to "eover" his items because it was important for them to be free in the air, but with the plastic bag he was at least allowed to have them in his room.

Hospital maintenance staff have successfully been instructed by patients and ontology nurses in seleeted instances to not touch, dust, or move these artifacts. For some patients, selected items like a medicine bag are not supposed to be removed from the body for any reason (including surgery). One ontology nurse, recognizing the spiritual importance of the patient having the bag with him throughout surgery, placed the bag within a sterile bag, sterilized the patient's thigh, and taped the sterile bag with the medicine bag inside to the thigh. This allowed (1) the patient to reach down and toueh the bag while conscious; (2) the bag to remain on the patient's body in compliance with personal spiritual beliefs; and (3)

the bag to be in a location that did not interfere with the medical staff's efficiency during surgery.

One of the cultural perspectives of cancer held by selected Native cancer patients involves the removal of the cancer tumor/tissue. This belief has been expressed by patients through concerns that surgery results in losing part of one's body, thus losing the spiritual path to their ancestors when one "goes to the other side." Patients with this belief have been assisted by working with their traditional Indian healer through prayer and ceremony that is designed to help one's ancestors and the patient know how to find one another when- ever the time comes for the patient to "make that journey."

Another perception is that cancer is seen as a culturally valid outcome for disturbing the sacred nature of the land (eg, strip mining, logging, burial of nuclear wastes). The attitude is occasionally expressed as "in time the earth will heal itself and the health programs will likewise diminish. ''2 The most acceptable way to address these perceptions is to "clean up the environmental contamination" and hold a public traditional cleansing ceremonies for the healing of Mother Earth.

Some tribal members will visit the Native cancer patient outside of the hospital unit. For example, when one patient from a Midwestern tribal nation was admitted to the cancer care unit, his friends and family camped on the lawn, set up their drum and commenced to play the drum, sing, and pray for the Creator's help. Other patients who were trying to sleep found the drum- ming to be disruptive, as did some of the hospital staff.

Of similar note is the burning of sage, cedar, and other natural products to help purge the hospital room or area of evil spirits and disease. There are tight constraints about the burning of any product in a hospital and burning restrictions are very important to prevent fires, partieularly in close proximity to a patient's oxygen equipment. Ontol- ogy nurses have worked with patients, family members, and healers in these situations to find alternative, non-fire-based ways to allow for such eleansing of the hospital environment (eg, use of corn pollen, ground up cedar sprinkled around the hospital bed).

These examples are fl'om cancer patients who are very traditional in their health beliefs. But the oneology nurse will also encounter some very acculturated cancer patients who may continue to practice a few traditional aspeets in their cancer


healing, but other than that, may be very similar to other non-native cancer patients.

SPIRITUAL AND ORGANIZED RELIGIOUS

ASPECTS OF CANCER RECOVERY

AND HEALING

O ntology nurses are well aware of the importance of spiritual healing within cancer treat-

ment and recovery. Spiritual healing takes on multiple roles within all cultures, including the more than 500 American Indian and Alaska Native tribal eultures. However, there is great diversity within tribal Nations, much of this diversity is based on historical events and contemporary in- terpretation of those experiences.

Institutionalized religions are common among American Indian Nations in any geographic region historically subjected to Church rule or control. The earliest exposure to Christianity was during the Columbus encounters. The seeond was during the Spanish invasion of the North American continent. This involved slavery primarily of the Pueblo and California-based Indian people to build the missions and perform farm and other labor under missionary rule. All slaves were sub- jeered to missionaries' efforts to convert to Cathol- icism. Subsequently, among such tribal Nations, there is a prevalence of Catholicism in Arizona, New Mexieo, and California-based tribes. Similar missionary efforts were integrated over a century later throughout the Northern Plain's tribal nations. Subsequent to these missionary efforts, there are contemporary Catholic churches that have integrated organized religion with traditional Indian beliefs. Catholic churches in many reservation and urban areas have altars of Jesus in Northern Plains traditional clothing and bead and bone work illustrating this integration and accep- tance of both institutionalized and traditional spiritual teachings.

However, the oncology nurse cannot generalize when dealing with a cancer patient from these tribes or regions. Because within these same eom- munities are tribal members who are very anti- Christianity and refuse to step foot within the Catholic church or any mission. Many California Indians who lived on or near the missions died from exposure to infectious diseases carried by Spanish immigrants which were manifested as life-threatening epidemics among indigenous people who had no immunity. To exacerbate the

anti-Christian mores among some California Indi- ans, the bones from enslaved missionary-building California Indians were used in the adobe to make the mission foundation stronger. Many California tribal members feel that the missions are eontem- porary grave yards of their ancestors who were victimized, enslaved, and murdered by Catholic religious leaders. Clearly a cancer patient who holds such beliefs is unlikely to partieipate in the Catholic ehureh.

Catholicism is not the only Christian religion to which Indians were forced to convert (part of the "forced assimilation" by the federal government). Religious institutions were given the role and power of "Indian agents" by the United States government during the latter part of the 1S00s and early 1900s. These included, but were not limited to the Mormon church with Utah-based tribal Na- tions and the Baptist Church with eastern Okla- homa-based tribes. In exchange for food, blankets, medicines, and supplies, the Indians were re- quired to convert and become church members. Simultaneously, similar efforts were occurring between the Orthodox Russian church and Alaska Natives. In many of these communities today, Christianity is closely integrated into the culture and organized religious spiritual healing and prayer are used just as they are among many other non-Native cultures.

TRADITIONAL HEALERS AND TRADITIONAL

INDIAN MEDICINE

A fter Indians were put on reservations, the foreed assimilation era was initiated through

the General Allotment Act of 1887. This act made it illegal for Indians to practice their traditional ways and subsequently was designed to force them to give up their "Indianess." As a result, Indians adapted to white Christian ways and some American Indians and Alaska Natives became Christians. Others refused this way of religion and maintained their traditional Indian way of life, but did so covertly because it was illegal under the Dawe's Act of 1887. Because of the 50 years of this program's influence, today there are some Amer- ican Indians and Alaska Natives who are Chris- tianized and others are still very traditional, and a large group are bicultural who use both traditional Indian medicine (TIM) as well as modern western medicine for their health care problems.

American Indians are reluctant to discuss alter-


na t ive and c o m p l i m e n t a r y h e a l t h t r e a t m e n t s wi th

m o s t w e s t e r n m e d i c a l p rov ide r s . Th is r e t i c e n c e is

s o m e w h a t due to non -Na t ive s m i s u s i n g the infor-

m a t i o n or us ing the i n f o r m a t i o n to be l i t t l e or

c r i t i c i ze the i n t e l l i gence of t he Ind i an pa t i en t , or

c o n c e r n s t h a t TIM p r a c t i c e s m a y no t be p r o t e c t e d

suf f ic ien t ly ( even u n d e r t he 1978 Ind i an F r e e d o m

of Rel ig ion Act) . 2

Tobias Mar t inez , a Mesea l e ro A p a c h e oral and

n e c k c a n c e r su rv ivo r / t h r i ve r , is an a d v o c a t e for

Nat ive c a n c e r pa t i en t s and t h e i r l oved ones. O n e

of m a n y c o n c e p t s t h a t Tobias exp la ins to p a t i e n t s

is the n e e d to c o m b i n e sp i r i tua l hea l ing wi th m o d -

e rn w e s t e r n m e d i c i n e . Tobias talks of the phys i ca l

t r a u m a of c a n c e r t r e a t m e n t and h o w i m p o r t a n t

w e s t e r n m e d i c i n e has b e e n in his cure . Likewise ,

he desc r ibes t he bea t i ng his sp i r i t e x p e r i e n c e d

t h r o u g h o u t t r e a t m e n t .

"I walked into this oncologist's offiee and was diagnosed with cancer. It was like someone took out a gun and shot me through my spirit. Then I go down the hall to chemo and got another shot through the spirit. Same thing in radiation. So you're doing all these things to help your body heal from the cancer, but you've also got all of these holes in your spirit caused by the cancer treatment pro- tess. You've got to participate in some type of spiritual healing to allow those holes to heal too. If not, you're never completely recovered from the cancer."

Accord ing to Walt Hollow, MD (Assinboine/

Sioux), Di rec tor of the Native A m e r i c a n C e n t e r of

Exce l lence in the School of Medic ine at the Univer-

sity of Wash ing ton (Seattle), TIM is used by over half

of A m e r i e a n Indians and Alaska Natives for the i r

hea l th care as well as wes te rn medic ine . To Native

Amer icans , m e d i c i n e and religion are inext r icably

l inked.

American Indian and Alaska Native tribes believe in life ways themes where there is a belief that eaeh tribe had a body of knowledge given to each tribe at the time of their creation. These themes provided information on how to live and maintain good health for each individual. Life ways themes generally advocate that all things in the universe are alive and have a spirit. This means that inanimate objects and phenomenon in the environment are alive and have power as well as obvious living things in the plant and animal world. To American Indian/Alaska Natives, animals, plants, rocks, rivers, oceans, winds, clouds, mountains, the sky, stars, moon, sun, and other celestial objects are all alive and have a physical, mental, and spiritual aspect that make up each objeets being. To stay in good health these three aspects of each being need to stay in balance or harmony. Illness results when there is imbalance or disharmony. Wellness occurs when bal- anee is restored. The ceremonial aspect of TIM is what restores the balance and results in harmony and wellness. Harmony and wellness does not necessarily mean a cure,

but does prepare a traditional Indian for the physical death of the physical part of their being. For most tribes, the TIM treatment done in the terminal stage of their life prepares their own spirit to return to the spirit world in balance and reunite with the creator. Many tribes also believe that the individuals spirit may then return to earth in a newborn baby's body at the time of birth to then reconstitute a new American Indian/Alaska Native being to create another life cycle. As a result, life for the Amer- ican Indian/Alaska Native begins at birth not at concep- tion for it is at birth that the spirit joins with the American Indian/Alaska Native physical and mental part of the individual being.

There are numerous ease studies in the medical literature that demonstrate that American Indian/Alaska Native cancer patients who use TIM as well as modern western medicine for their health care plan have better heath outcomes or, in the ease of terminal disease, die at peace with themselves and in balance ready to reunite spiritually with the creator. There are ease studies that do show TIM as being part of a successful cancer treatment for some Indian patients. When terminal cancer is treated with TIM, the process of cancer treatment is a positive experience as viewed by not only the patient but his/her family as well. From the patient's perspective, their spirit is prepared to reunite with the creator in the spirit world which brings them to a position of inner peace with themselves. 22

T r a d i t i o n a l Ind i an m e d i c i n e and m o d e r n west -

e rn m e d i c i n e are bo th avai lab le at h e a l t h ca re

s y s t e m s for t he m a j o r i t y of A m e r i c a n In d i an /

Alaska Nat ive pa t i en t s in this coun t ry . Whi l e b o t h

sy s t em s d iagnose and t r ea t t he ind iv idua l pa t i en t ,

t h e r e are d i f fe rences in h o w e a c h h e a l t h ca re

s y s t e m a p p r o a c h e s the p a t i e n t (Table 1). 23

T rad i t i ona l Ind ian m e d i c i n e for c a n c e r ca re

typ ica l ly i nc ludes p rayer , he rba l beve rages or top-

ieal o i n t m e n t s , and c e r e m o n y . A m e r i c a n Ind i an

c a n c e r pa t i en t s m a y re fuse to in i t i a te t r e a t m e n t

unt i l t h e y h a v e p a r t i c i p a t e d in t r ad i t i ona l Ind ian

c e r e m o n i e s . Th is typ ica l ly r equ i r e s a r e t u r n to

t he i r r e s e r v a t i o n and a t r ad i t i ona l Ind i an hea le r .

C e r e m o n i e s o f ten r e q u i r e m a n y m o n t h s of p repa -

ra t ion . To date , w h e n the Nat ive C a n c e r Surv ivors

N e t w o r k has c o n t a c t e d t r ad i t iona l Ind i an hea l e r s

and asked for t he i r a s s i s t ance in ge t t ing the pa-

t i en t in to w e s t e r n m e d i c a l ca re w i t h i n a few weeks

of d iagnoses , t he hea l e r s h a v e b e e n to ta l ly sup-

por t ive . Most t r ad i t iona l hea l e r s feel t ha t c a n c e r is

a wh i t e m a n ' s d i sease and, t he re fo re , the t rea t -

m e n t needs to i nc lude m o d e r n w e s t e r n m e d i c i n e .

Hea le r s h a v e p e r f o r m e d less r igorous c e r e m o n i e s

r e q u i r i n g on ly I to 2 days, w i th the u n d e r s t a n d i n g

tha t the p a t i e n t will p a r t i c i p a t e in a "full" cere -

m o n y la te r . T h e N a t i v e c a n c e r p a t i e n t b e g i n s

t h e t r e a t m e n t f ee l ing s p i r i t u a l l y s t r o n g e r a n d

" c l e a n e r . " O n c e the a d j u v a n t t h e r a p y has b e e n


T A B L E 1.

Comparison of Traditmnal Indian Medicine and Modern Western Medicine 2~

Traditional Indian Medicine Modem Western Medicine

Mind, body, spirit holistic approach Reductionist approach Patient's tribal beliefs of health and illness used along with physical, Reductionist data-biochemical, physiologic,

social, and spiritual data to make diagnosis anatomic, lab data used to make diagnosis (social/

Honors the patient for restoring wellness system and remain sick History, physical, family assessment used along with treatment plan Disease/curing emphasized Herbal medicine from nature may be used Honors the physician for curing Preventive medicine taught to patient and family History, phys ca ab data and treatment p an

Pharmaceutical drugs from US Food and Drug

completed and the patient is strong enough to participate in a ceremony, the healers can con- duet a complete eeremony (usually requiring 3 to 5 days of ceremonial events that may or may not include fasting). 24

The oneology nurse who is caring for a patient preparing for a TIM ceremony involving fasting needs to counsel the Indian patient on how to safely fast and/or perform a sweat lodge ceremony to avoid dehydration or other potential adverse effeets. Aeeording to Dr Hollow, the role of the physician should be to no t discourage the use of these ceremonial treatments but rather to collab-

orate with the TIM healer, the patient, and the patient's family on how to perform these ceremonies with the least eomplieations and the greatest medical or ceremonial benefit for the patient. 22 According to Bell, 2s that Native patients may come to the emergency room with a wound eov- ered with pifion pitch and herbs (which is difficult to remove to proceed with subsequent emergency treatment). During ceremonies, modern western medicine and prescriptive drugs are discontinued, which can result in serious health emergencies. Clear communication could contribute in reduc- ing the frequencies of such situations.

Herbal preparations by traditional healers vary with each patient, type of cancer, and tribal affil- iation. For that reason, it is important for the traditional healer and oneology providers to work together to reduee the likelihood of (1) a herbal therapy interfering with adjuvant therapy, (2) a herbal and prescription drug synergistic effeet; (3)

the patient refusing to solely participate in modern Western medicine; and/or (4) the patient refusing to solely participate in TIM. Every effort to be inclusive of TIM ceremonies and herbal thera- pies should be accommodated by the western- trained provider so that the Indian patient can fully participate in the TIM and spiritual aspeet of their care. This collaboration means eommuniea- tion among the oneology providers, the TIM healer, the patient, and the family.

Before eollaboration ean take place, it is important for the oneology nurse to know which Amer- lean Indian or Alaska Native patients praetiee TIM. A SPIRITual history can be taken using a tool developed by Hollow. 23 Prior to taking a SPIRITual history, it is understood that a good provider- patient relationship needs to be in existence. Be- cause of the historical labeling of TIM as "uncivi- lized" and "savage" by non-Indian providers, they need to make sure they praetiee the SPIRITual history without bias. Use of the word SPIRIT as a pneumonie helps remind the practitioner of the information vital to collaboration with the TIM healers for the benefit of the patient. To assist in this process, a list of questions were developed (see Table 2).

Just identification of the Indian patient who will use TIM does not end the responsibility of the western provider who is treating an American Indian/Alaska Native patient. The practitioner needs to be prepared to interaet with the patient, the patient's family, and the TIM healer to eoor- dinate future eare. Primary care providers also


Are you culturally identified With a tribe? Do you fo ow or ascribed to the tradit onal bel efs of your tr be? Do you know your tribe's creation story?

P-Personal spiritua ity Describe tl~e beliefs and practices of your spir tual system

that you personally accept What does your spiritua ity mean to you.'? Do you participate in the spiritual ceremonies of your tribe? Do you know the purpose of your tr ba ceremon es? Do you know where yodr tribe's sacred places are?

I-Integration with spiritual community Do you belong to the Indians spiritual or religious groups

such as? Shaker church Native American church Tribal-specific religion What is your position or role? Is it a source of support? Could this group help n dealing with health problems? Who are the traditional hea ors or herbalists that may help

you with health problems? W0u d you ke me as your physician to collaborate with your

healers n regard to ~/our health? R-Ritualized practices and restrictions

Do you participate in the spiritual ceremonies of your tribe (sweat lodge smudging shaking tent b essing way, peyote, ~o name a few)?

should be prepared to participate in the ceremonies an Indian cancer patient may request. For many patients and primary care providers this ceremonial participation can solidify and enhance the future provider-patient relationship as they treat their specific form of cancer.

WORKING WITH THE FAMILY ON

HOME CARE

T he role of the American Indian family in providing health care to its members is complex

and may include practical care, advice, and per- formance of religious rituals to spiritually protect family health and well being. Home eare is an important health concern for American Indian communities. 2 Such care is important whether the patient is from the reservation or an urban area. Kramer's 1995 study of 360 older intertribal American Indians living in Los Angeles::' found that elders (58 years and older) reported that neither eommunity-based human services nor family home care was suffieient to meet their perceived need for assistance with activity of daily living. 2 Likewise, urban elders are also more dis- advantaged than their reservation peers in receiving critical linkage information about psychologi- cal and supportive services from their attending physicians.2, 26

The social service system was not always supportive of the Indian family, in Kramer's example, American Indian care givers were often unmarried grandsons providing transportation for medical appointments and providing personal eare and home living skills to the grandparents. These men were considered ineligible for in-home supportive service stipends according to the Department of Social Serviees because, as young men, they should be in vocational training or in the work force. This intergenerational care giver is com- monplace among Native communities. Unlike other ethnicities, American Indian care givers may not express guilt and anger toward their dependent elders. 27 The priority of the entire family may be foeused on the needs of the sick. 7

Dr Judith Salmon Kaur 2s (one of only two Amer- ican Indian oneologists in the United States) em-

*Los Angeles county has the highest number of American Indians residing within its urban areas than any other urban county in the United States (census data from 1980, 1990, and preliminary data from 2000).

N A T I V E A M E R I C A N CULTURE 215

phasizes the importance of supportive care provided by home eare services. She acknowledges that many Native patients would stop their cancer treatment prematurely without such care. Ac- cording to Kaur, there are inherent ineentives for planning appropriate home care services to Amer- ican Indian and Alaska Native cancer patients, which include, but are not limited to: (1) improved quality of life for the patient; (2) reduced hospital length of stay; (3) redueed total hospital- izations; (4) reduced transportation costs for travel vouchers; and (5) improved hospice services to terminal patients. Unfortunately, the IHS cannot qualify for Medicare and Medicaid home care support (beeause they are not "hospitals or skilled nursing facilities" run by the IHS).

Patients need to take control of their treatment and healing. To do so, removes the patient from perceiving her/himself as a victim 29 and to have a proaetive voice and choice in all aspeets of the health care they receive. 3° In addition, the entire family may help make health decisions (ie, eollee- tive decision-maMng). The medieal ethie of patient autonomy may be challenged by the cultural strength and involvement of the family unit).

One of the roles that family members serve in selected tribal communities is that of decision maker. This has been challenging for oneology nurses to address because of the health care ethics of assuring that the patient is making a free ehoiee rather than being influeneed into a particular type of health care choice. According to some tribes, the elder female in the family makes all such decisions. In others, the family unit discusses and decides what the patient will do. The patient from these types of traditional perspeetives almost always complies with the family's treatment choice and are rarely open to opposing the family's deei- sion.

In addition, family-based, collective decisions may result in the urban Indian patient and one or more family members leaving a health faeility and returning to the reservation. Among the more common reasons for this relocation is that most urban Natives do not have adequate health care insurance. The patient returns to the reservation to aeeess tribal or IHS. Tribal ordinances typically require that tribal members are not eligible for medieal eare until they have resided on the reservation for at least 180 days. Their cancer care is delayed while they re-establish resideney and then they confront CHS priority listings and delays for referral to oneology eare.

ADDITIONAL FAMILY INVOLVEMENT IN

CANCER CARE

T he entire family is frequently involved with treatment and recovery. The oneology health

eare team may be asked to participate in multiple roles by family members. Such roles have in- eluded spiritual eeremonies, which is an honor for the oneology nurse to reeeive such an invitation. Additional roles may be composed of daily prayers (both individual and groups), working with the family as advocates for the patient within the health care system, training the family as eare givers, and counseling the family on how to deal with their own emotions related to the cancer experience (ie, caring for the eare givers and loved ones).

The family has unique functions and decision- making roles when the loved one is dying. Family- based decisions include where the patient should be eared for at the end of life. In some tribal Nations, the location would not be the home (evil spirits linger and ghost siekness can affliet some family members), unless the family felt comfortable burning the home strueture and all of its belongings after death had oecurred. For many families, an alternative, but eomfortable setting is selected for the dying individual.

Again, to illustrate the variability of tribal prae- tiees, in another tribe seleeted female members of the tribe are expected to help prepare the body for its journey "to the other side." This includes washing the hair and body, sometimes providing selected belongings with the body, and putting the body into a eulturally speeifie position rather than lying prone as is eommon in modern Western medicine.

A very important eoneept to whieh many members of the oneology health care team are unfamil- iar is that "family," within Ameriean Indian and Alaska Native communities, is not restricted to blood relatives. Adoption of nieees, uneles, eous- ins, sister, mothers, grandfathers, and so on are common oecurrenees. These adoptions typieally do not go through the US eourt system, but are integrated within tribal-speeifie adoption eeremonies. Health eare providers who restriet visiting privileges to immediate family members ean be surprised to find more than 100 such family members who are eligible from the Native's perspeetive (eg, one Cherokee/Shoshone patient had more than 300 relatives who wanted to eome pray and


sing for his recovery camped outside his hospital room). The oneology nurse can ask that family members take turns visiting so as to not over-tire the patient. Likewise, to reserve singing and chanting to selected times of the day to allow other patients who need quiet and sleep to rest undisturbed. One family recorded their prayers and songs, borrowed a tape reeorder and headphones from the hospital library, and the patient listened to the prayers with the headphones. The nurse can help the family members find an isolated area where they can sing out loud (so that the Creator can hear the prayers) that is dose to the health care facility, but not so near as to disturb other recovering patients.

Although there typically is a large Native Amer- ican family, it is not unusual to have one or two key family members assume the responsibility as the primary care giver. The cancer patient typically does not receive care within their local community and must travel several hundred miles for cancer treatment. The family care giver may or may not be in attendance while surgery and treatment are rendered and, thus, the cancer patient may go through the treatment experience in isolation. Local support is needed, but the preference is for culturally relevant support.

PROVIDER ?kND PATIENT INTERACTIONS ,~D

C OMMUNICATION

W henever feasible, it is helpful for the health eare system to hire and train health

care navigators or lay health advisors (eg, Native Sisters, Promotores, The African American Sis- ter Network). Of note is that these need to be hired positions and not filled by volunteers. Because Native American communit ies are poor, these people need salaried positions. These trained navigators or lay health advisors (called Native Sisters or Brothers) have significant impact on helping the Native cancer pa- t ient obtain quality health care, as well as to explain in an understandable manner what is happening to both the patient and the patient 's loved one. When possible, the Native Sisters or Brothers are supplied with tape recorders so that the provider's recommendat ions and explanations ean be taped with permission and listened to later by the patient, family member, or sometimes by another health care provider to help translate the medical phrasing into easy-

to-understand wording. Any newly diagnosed eaneer patient ean only hear "so mueh." Some- times, perhaps months later, the tape explains something that the patient is now ready to understand, but at the time, couldn't take in any more information.

During the Native Ameriean Women's Wellness through Awareness project, 31 the Native Sisters gradually learned that they needed to rephrase the way some questions were asked. For example, they would ask the Native breast cancer patient, "Do you understand?" and of course the women nod in the affirmative. However, when the Native Sister rephrased the question using an interroga- tive pronoun, such as, "When you go home tonight and talk with your Auntie, how will you explain what the provider just told you9" the lack of comprehension was quite telling. A common re- sponse was, "the provider said that I'm not going to die this winter." The physician/provider was always shocked by what the patient actually understood. Over time, the Native Sisters aeeompa- nied different patients to see the same oneologist or surgeon. Of note is that the providers' communication skills improved so that he/she was using more and more simple phrasing and easy-to- understand concepts. This is another important reason for health care agencies to hire navigators and health care providers, they provide an unusual form of provider inserviee education for the faeility.

Pain scales do not appear to be working for elder Native American cancer patients, although they may be appropriate for use with younger patients. Linear scales resulted in people seleet- ing a favorite or sacred number rather than using the pain scales as an indication of how much pain the patient was in. Thus, the patient was under medicated. Striekland and col- leagues32, 33 found that the Nooksaek communi ty conceptualized pain holistieally (mind, body, emotion, and spirit). A circular model evolved while working with this tribe that started with noticing pain symptoms, deciding to see a doc- tor, or if the t rea tment was unsuccessful to change or consult traditional healers. An abridged draft of the circular eoneept of pain is illustrated in Fig 1. This draft of a conceptual cancer pain model is in the process of being refined by the Native American Cancer Re- search.

This circular pain model is quite different from what is typically used as a linear pain scale. It is


WEST Perseverance

Testing of the Will Consolidating Personal Power

Spiritual insight Daily Prayer Reflection

Contemplation Respect for spiritual struggles of others

Sacrifice Humility

Love for the Creator Ceremony

Vision of possibilities and potentialities

Wisdom Thinking

Speculation Problem ~lvin~

Justice A

/ /

NORTH Imagining Lessons of things that end Seeing how all things f i t together ~>~Freedome from Hate

om from Fear

Cancer Pain Medicine Wheel*

EAST Ability to see clearly through

complex situations Situations in perspective , to believe in the unseen

Hope Courage

Truthfulness leadership

Warmth of spirit ~ Vulnerability

~) Guiding others ~ for the People Hope ~ Trust in your own vision 9 Ability to focus attention on

present tasks

SObrrH

Physical discipline Training senses such as sight, hearing, taste, touch Determination Discrimination in sight, hearing and taste Goal setting Ability to express hurt and other bad feelings Compassion Ability to express joy and good feelings Kindness Feelings refined, developed, controlled

FIGURE 1. Circular pain model. (Concept adapted from The Sacred Tree. Four Worlds Development Press, 1985.)

based on the "medicine wheel" and the characteristics of pain as related to each of the "four direc- tions" as depicted within the medicine wheel. Pretesting of this draft model with cancer patients resulted in cultural acceptability and the patients felt that this perception of pain helped them to understand their pain. It is not yet known how this draft will be revised.

There also is a need to color code and use symbols on prescriptive medication (eg, pain medication). Many elder Native cancer patients had limited English-reading skills and were con- fused between which bottles of pills were for treatment medication versus those that were for pain. The medical providers' stereot3qaieal perception of the stoic Indian also resulted in insufficient pain medication.

In Kramer's study, e American Indians reported that they did not expect to be treated fairly by non-Indian health care and service providers. This is in the process of being substantiated by the Native Cancer Survivors Network, in which preliminary data illustrates Native breast caneer sur-

vivors tended to not receive information on breast-conserving surgery because providers said, "you couldn't get here to do the radiation any- way."

Another issue of concern primarily with older Native Americans is that, for most, English is a second or third language. When receiving trau- matic information (eg, eaneer t rea tment information), the individual translates the information from English into their pr imary tongue, figures out what she/he wants to ask or say in the primary tongue, then translates it into En- glish and then says it out loud to the provider. While all of this language translation was occurring in the brain, the provider typically had continued saying information. The patient obviously missed all of the new information. Table 3 summarizes a few suggestions for ways to improve communicat ion with Native cancer patients.

This issue is closely related to another, and that is the need to having a long pause following questions asked by the provider. A long pause

218 BURHANSSTIPANOV AND HOLLOW

T A B L E 3.

Examples of Ways to Improve Communicat on With Native American Cancer Patients

Verbal (Words)

Words to Avoid Medical jargon Rapid speech Experiment (connotations of "guinea pigs") Loud tone Research (experiences of communities not . . . . . . . . . vocal tones

receiving results) Mumbling Protocols (has no meaning) Talking while the patient is talking Clinical trial (has no meaning) Positive (when referring to presence of

cancer)

Vocal Nonverbal

Avoid Avoid Touching without first being touched

by the patient Direct eye contact unless the patient

looks you in the eye Sitting within the patient's "personal

space" Leaning into or toward the patient

Words to Use to Help Explain Recommendations Recommendations Benign, use "not cancer" Soft-spoken, gentle tone Sit side-by-side rather than behind a Adjuvant therapy, use "treatment given in Confident tone desk or table while talking with

addition to the original therapy" Slow rate of speech the patient or family members BioPsy, use "test to check for cancer Clear inflection and articulation If the patient is uncomfortable

cells" Pause (ie, "silence") after asking Chemotherapy, use "anticancer poisonous . . . . . . . . . . . . . . patient

drugs" Dysplasia, use "abnormal cells that are not

cancer" Hormonal therapy, use "treating cancer by

removing, blocking, or adding hormones"

Surgery, use "operation to remove cancerous growth"

looking you in the eye, but rather focuses on your forehead, chin, or shoulder, then you do the same (obviously if the patient establishes direct eye contact, you do likewise)

Be cognizant of the patient's "personal space" and remain outside of it. unless touched or "asked to come within" (eg, "will you hug me?")

(more t han a m i n u t e ) is n e e d e d where the pro- v ider remains silent and allows the patient to translate in their minds, to formulate the question of interest, and then to present it. Most providers are uneasy with such a long period of silence when consulting with a patient. This long pause also allows the patient to realize that the provider is ser/ous about being willing to listen to his or her questions.

Al though this has b e e n m e n t i o n e d in prev ious publ ica t ions , 34-36 it is wor th r epea t ing tha t w h e n c o m m u n i c a t i n g wi th a newly d iagnosed pa t ien t , the p rov ide r needs to be careful abou t how words such as p o s i t i v e and n e g a t i v e are used. To tell the pa t ien t , "you r t u m o r tes t was posi- t ive," usual ly m e a n s tha t the t es t resul ts were good news of no e a n e e r cells p re sen t , r a t h e r

t han tha t a pos i t ive tes t m e a n s the t u m o r had e a n c e r cells.

CONCLUSION

T he oncology nurse has mult iple opportuni t ies to work with both the cancer pa t ient and

family m e m b e r s in providing quality care throughout the con t inuum of the cancer experience. Na- tive Amer ican communi t i e s are culturally diverse bo th among tr ibes and within tribes. Oneology nurses need flexibility, creativity, and pat ience to find culturally acceptable ways to work with pa- t ients who are f rom a cultural background and perspect ive different f rom their own.

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