Original Article

American Journal of Hospice

& Palliative Medicine®
End-of-Life Treatment Decision Making: 2014, Vol. 31(5) 503-512
ª The Author(s) 2013
Reprints and permission:
American Indians’ Perspective sagepub.com/journalsPermissions.nav
DOI: 10.1177/1049909113489592
ajhpm.sagepub.com

Yoshiko Yamashita Colclough, PhD, RN1

and Gary M. Brown, MSED1

Abstract
This study explored American Indians’ end-of-life experiences in treatment decision making. Scarce knowledge about this popula-
tion’s perspective regarding end-of-life treatments has resulted in health care providers (HCPs) functioning at less than optimum
levels. Using a community-based participatory research approach, open-ended interview data were collected and analyzed using a
grounded theory method. Patient and family participants generally stated that the physicians made the treatment decisions for
them, while HCPs believed that patients participated in informed autonomous treatment decision making. Both parties (HCPs
and patients and families) were not aware of American Indian’s psychological aspect that interfered with the exercise of the right
of informed consent. This additional understanding would benefit them in order to result in ethically and legally sound practice of
patient’s autonomous treatment decision making.

Keywords
end of life, decision making, American Indian, community-based participatory research, qualitative, ethical, legal, patient and family

Introduction individual autonomy, such as paternalism and longevity, should

be respected as well.16-21 However, cultural variations of under-
Autonomous informed decision making by patients has been
represented populations in the United States (US) have yet to be
considered the desired ethical practice for end-of-life care and
identified, which means that current medical practice may not
treatment. The concept of informed consent derives from
respect the values of these populations.
autonomy as an ethical principle.1 Medical informed consent
American Indians are one of the least included populations
originated in ancient Greece and Rome2 and differs from the
in the literature on end-of-life studies.22,23 One reason for this
current view in that the original view combined a paternalistic
may be that talking about end of life is taboo for many Amer-
approach of patients’ obedience and respect for the physician
ican Indian individuals and tribes,23,24 which number more
with a physician’s moral authority and subjection.2 Importance than 50025 and vary in value, belief, attitude, and lifestyle. Indi-
of informed consent shifted since the Nuremburg trial and its
viduals belonging to tribal nations influenced by Christianity
legal procedure now requires 2 components: (1) ‘‘important
during the boarding school periods may feel less restricted talk-
and fundamental autonomy of the patient to decide, which
ing about end-of-life issues.26 Among scarce sources, Ventres
stems [from] one’s personal rights’’ and (2) ‘‘the essential
et al,12,13 in their ethnographic work, illustrate the different atti-
objective element, which is information.’’2(Abstract) If these 2
tudes between a physician and American Indian family mem-
components are not included in the informed consent process,
bers in their discussions to make end-of-life treatment
legal issues could arise.
decisions. The physician follows the structure of the hospital
Construction of an environment for patient’s autonomous advance directive form, while the family focuses on its sense
decision making and provision of information, however, is not
of right behavior at the time of death. The family feels the
so simple. This is especially true in an end-of-life decision-
information provided by the physician is too detailed and unne-
making situation. Researchers have identified various levels of
cessary, causing the patient undue suffering and taking away
family and physician’s involvement,3-9 different definitions of
autonomy by physicians and patients,10-14 and a psychological
mechanism that impacts end-of-life decision making. A study
by Karel et al15 revealed that patient’s cognitive and rational
1
College of Nursing, Montana State University, Bozeman, MT, USA
ability as well as values, beliefs, emotions, and long-life experi-
Corresponding Author:
ences might influence medical decision making.16 Additionally, Yoshiko Yamashita Colclough, PhD, RN, Montana State University, PO Box
researchers have recognized cultural value variations in end-of- 173560, Bozeman, MT 59717, USA.
life decision making. The studies indicate that values other than Email: yoshikoc@montana.edu
504 American Journal of Hospice & Palliative Medicine® 31(5)

hope. In contrast, the physician reports feeling good about his Setting and Populations
interaction with the family. Although the physician’s demeanor
The partner American Indian tribe was located in a frontier
is the same with all the patients,27 the different perceptions by
state. As with many other federally designated reservations,
the 2 parties reflect different values and orientations.
this tribe is an area with limited transportation routes, occa-
Hepburn and Reed report health care providers’ (HCPs)
sional isolation during severe winters, few opportunities for
viewpoints of ethical and clinical issues with American Indian
economic development, and chronic poverty that leads to lim-
elders during end-of-life decision making.28 They describe
ited access to a full range of health care services. Over 10 000
situations where American Indian families accept the role of
enrolled members in the partner tribe are eligible for health
making decisions for their ill family members in the face of
care through the Indian Health Service (IHS).36
an emergency, when the patients are incompetent to make their
Two characteristics of many American Indians from this tri-
own decision.28 Many American Indians believe in a cyclic
bal nation are an attitude toward Euro-American/Western con-
nature of life, where impending death is not seen as a great
cepts and communication. With denial and elimination of the
struggle.28 In addition, the involvement in decision making
traditional forms of healings and languages by Euro-
by authorities, such as elders and tribally respected individuals,
Americans in the past, American Indians may be suspicious of
is seen positively,29 and decisions made by individuals are
Euro-American views and practices, including allopathic medi-
strongly respected.23 The family’s involvement is secondary
cine.37 For example, clinicians, whether they are American
or seen as supporting the patient’s decision.28 Here, autono-
Indians or not, are often viewed negatively.28,30 This skepticism
mous patient decision making appears to be strongly supported
reflects the historical trauma of American Indians and contri-
culturally. However, ‘‘the process of arriving at a surrogate
butes to the attitudes of American Indians toward the IHS.
judgment was indirect and required patience and careful atten-
Many American Indians from this tribe use the indirect com-
tion . . . to stimulate and hear it’’28(p106) since the use of a fam-
munication and the oral tradition. Nonverbal communication
ily meeting is a general decision-making process in such cases.
styles, soft speech, and use of symbols and metaphors are some
Further, making a decision in advance, such as in filing an
examples. In the oral tradition, cultural materials and tradi-
advance directive, is considerably more difficult.28,30 This
tional information and knowledge are transmitted through stor-
notion can be understood from the perspective of many Amer-
ies and songs to the next generation. This is in contrast to the
ican Indians: a focus on the present time, a belief in the power
use of explicit expressions and documentations in Western
of words, and an avoidance of negative connotations.31
societies. The oral tradition is a powerful method of sharing
What is lacking in the existent literature is the perspectives of
values and beliefs in American Indian societies.
American Indian patients and families when the patient with a
Four cohort groups represented the tribal view on end-of-life
chronic illness is faced with end-of-life issues. Even though the
experiences. The intention was to be inclusive of various view-
need for inclusion of culturally diverse perspectives has been
points, especially generational diversity and to be reflective of
emphasized in many studies,19 only limited empirical evidence
whole tribal values to create a culturally appropriate hospice
regarding American Indians has been published.23,27,32-34 Here
intervention. Group 1 was comprised of family members who
we report the voices found within an American Indian commu-
lost their loved one with a chronic illness. Group 2 participants
nity and identify possible areas of improvement for both HCPs
were patients who had a chronic illness diagnosis. Group 3
and American Indian patients and families in terms of end-of-
included family members who were currently taking care of
life treatment decision making. The purpose of the study was
a family member with a chronic illness. Group 4 were HCPs
to identify the tribal values and contributing factors that influ-
who had worked in the tribe more than 2 years as licensed or
enced end-of-life decision making and care in order to develop
professional HCPs. All participants met the following inclusion
a culturally congruent hospice care intervention. In this report,
criteria: (1) living on the reservation with tribal membership
we address treatment decision making. An in-depth analysis of
(except some HCPs), (2) English speaking, (3) older than 21
the tribal values and contributing factors that influenced end-
years of age, and (4) had experienced difficult treatment and/
of-life experiences will be presented in a separate article.
or care decision making for self or family members or by their
patients that could have resulted in a life-threatening condition
Methods such as cancer treatments, renal dialysis, intubation, or transfer
to another facility. The patient population was 40 years of age
Recognizing that each tribe is a unique sovereignty, a colla-
or older. Inclusion criteria were set to establish a certain level
borative team from the tribe and the academic institution
of homogeneity to avoid extraneous analysis. The team esti-
designed the exploratory assessment study using the grounded
mated that more than 10% of the eligible population would
theory method. The team began working together in 2007.
be required to participate in data saturation.
Because the community-based participatory research (CBPR)
approach entails community involvement in all research steps
rather than having community members participate in as parti-
cipants,35 the team employed the CBPR approach. The CBPR
Procedure
approach is the best fit for the sensitive topic area of this study, Interview sample questions were constructed based on the aca-
ethically and strategically. demic partner’s (AP) dissertation study. Consultation with
Colclough and Brown
team members and conduct of a pilot test ensured appropriate-
ness, comprehensiveness, relevance, sensitivity, and accept-
ability to potential participants. To identify the tribal values
and contributing factors that influenced end-of-life decision
making and care, focus areas for the interviews included end-
of-life or chronic illness experiences, process of decision mak-
ing, and types of care received or provided. Sample questions
included ‘‘What was it like to be with your (deceased loved
one) when he/she was getting weak?’’ ‘‘How were the treat-
ment/care decisions made?’’ and ‘‘Do you think your family
member passed away as he/she liked?’’ A decision-making pro-
cess was defined as a systemic series of actions directed to an
ending or conclusion including execution of the conclusion.38
The team obtained approval of the research protocols from 5
institutional review boards (Tribal Nation, academic institution,
regional and national IHS, and National Institute of Health). The
AP and 2 community research associates (RAs) collected the
interview data. Interview training by the AP to the RAs included
observation of interviews and use of sample interview questions
to ensure the intention of the questions and their connection to
the purpose of the study. Community team members took the
role of key informants for recruitment in addition to advertise-
ments via posters, facility visits, and community awareness proj-
ects. Each interviewer contacted potential participants by phone,
explained the referral source(s) and the study using an interview-
overview handout, and assessed their interest in the study. Extra
care was taken to avoid the perception of coercion.39 The major-
ity of the participants were interviewed at their home; if not,
every effort went into maintaining privacy within the location
chosen by the participants. After obtaining informed consent, a
face-to-face 1-time open-ended interview began. Interviews
lasted an average of 1 hour and 12 minutes, with a range of 23
minutes to 2 hours 15 minutes. Demographic information was
obtained from each participant to enhance comparative analysis.
A transcription specialist transcribed audiotaped interview data
verbatim for analysis, and the AP and RA reviewed those data
for accuracy. Then, the AP entered data into the QSR NVivo
8 software program40 to facilitate data analysis.
Data Analysis
Descriptive statistics were used to describe the characteristics
of the participants and to facilitate a constant comparative anal-
ysis of participant’s experience and process of decision mak-
ing. A concurrent data collection and grounded theory
method of analysis were modified due to the long distance
between the tribe and the university. Multiple interviews were
analyzed together versus the usual process of analyzing indi-
vidual interviews separately. The initial interview questions
became more specific as the study progressed and the
demographic-based purposive sampling by gender and age was
employed later. Ideas (eg, caring and diagnosis) were categor-
ized and organized to determine common themes (eg, family
and privacy) by isolating ideas within the situation. With con-
stant comparative analysis, a common idea was applied to other
situations. Next, theoretical coding (eg, connection) revealed
505
relationships among ideas at consecutively higher levels of
abstraction. Recruitment was stopped when data saturation
occurred. Besides data analysis meetings among the team
members, 4 formal presentations were held with the tribal
council and community at large to report the progress of the
study and seek advice to assure accuracy and study rigor.
Results
Participants
A total of 85 potential participants were identified and con-
tacted by 1 of the 3 interviewers over 3 years. Of the 73 indi-
viduals who agreed to participate, 10 did not attend the
interviews and 5 did not meet the inclusion criteria, resulting
in a final sample size of 58 participants. During the course of
the 58 interviews, additional stories were told. This increased
the stories for patient case analysis to 65. In addition to patient
case analysis, relationships were also analyzed (n ¼ 84). A
relationship was defined as relation between participants and
those individuals were defined as ‘‘patients.’’ For example, 1
participant talked about (1) his own chronic illness, (2) his
mother who died, and (3) and (4) 2 siblings who died. This
resulted in 4 patients and 4 relationships. One family triad unit
talked about the same patient and so was counted as 3 partici-
pants, 1 patient, and 3 relationships. Table 1 shows the charac-
teristics of the participants and relationships, and Table 2
shows the demographic data of the patient cases.
Group 1, family members who lost their loved one, consisted
of 37 family members with 45 patients. Of 45 patients who died,
5 (11%) patients used hospice service at home or in a hospice
facility; 20 (44%) patients were in the hospital at death including
3 patients who were at home until the imminent death. Of the 45
patients, 10 (22%) patients who died did not have any form of
advance directives. The remainder (n ¼ 35; 78%) of the patients
who died had some type of advance directives, but their proxy,
according to the participants, did not need to use it.
Group 2 was comprised of 10 patients, with 6 patients being
in remission after receiving chemotherapy, radiation, and/or
surgery and 1 patient who passed away 3 days after the inter-
view. Group 3, family members who were currently taking care
of their ill family member, included 17 family members with
14 patient stories. Of the 14 patients, 4 patients overlapped with
those in group 2. Group 4 was comprised of 6 HCPs. Five
American Indians and 1 non-Indian HCP were included in this
group. One participant desired to stop the interview while dis-
cussing a second patient and gave permission to analyze the
first patient story.
Treatment Decision Making
The HCP’s, patient’s, and family’s perspectives were com-
pared in the periods of diagnosis and acceptance and on the
treatment outcomes. The following section describes HCP’s
view of the treatment decision making and then the patient and
family’s perspectives on treatment decision making in detail.
506 American Journal of Hospice & Palliative Medicine® 31(5)

Table 1. Participants’ Demographic Data.

Participants, N ¼ 58 (%) Group 1, n ¼ 37 (%) Group 2, n ¼ 10 (%) Group 3, n ¼ 17 (%) Group 4, n ¼ 6 (%)

Gender
Men 29 (50) 17 (46) 5 (50) 8 (47) 2 (33)
Women 29 (50) 20 (54) 5 (50) 9 (53) 4 (67)
Age
20-29 10 (17) 6 (16) 4 (24)
30-39 6 (10) 5 (14) 2 (12)
40-49 12 (21) 7 (19) 5 (50) 3 (18) 1 (17)
50-59 14 (24) 8 (22) 2 (20) 2 (12) 1 (17)
60-69 9 (16) 7 (19) 1 (10) 5 (29) 3 (50)
70-79 3 (5) 2 (5) 1 (10) 1 (17)
>80 4 (7) 2 (5) 1 (10) 1 (6)
Religion
Catholic 42 (72) 26 (70) 9 (90) 16 (94) 2 (33)
Native 6 (10) 4 (11) 1 (6) 1 (17)
Both 8 (14) 5 (14) 1(10) 3 (50)
Methodist 1 (2) 1 (3)
Any 1 (2) 1 (3)
Recruitment
Personal 46 (79) 29 (78) 7 (70) 17 (100) 3 (50)
Self-identified 7 (12) 4 (11) 1 (10) 2 (33)
Awareness project 2 (3) 2 (5) 2 (20)
Direct approach 2 (3) 1 (3) 1 (17)
Snowballing 1 (2) 1 (3)
Race
Indian 5 (83)
Non-Indian 1 (17)
Family unit
Dyad 9 4 [3] 5
Triad 2 1 [1] 1
Relationships
Mother 15 (18) 11 (22) 4 (24)
Father 13 (15) 12 (24) 1 (6)
Self 10 (12) 10 (100)
Grandmother 8 (10) 7 (14) 1 (6)
Aunt 7 (8) 4 (8) 3 (18)
Friend 5 (6) 4 (8) 1 (6)
Husband 5 (6) 4 (8) 1 (6)
Brother 5 (6) 2 (4) 3 (18)
Sister 2 (2) 1 (2) 1 (6)
Ex-husband 2 (2) 1 (2) 1 (6)
Grandfather 2 (2) 2 (4)
Wife 1 (1) 1 (2)
Uncle 1 (1) 1 (2)
Unofficial wife 1 (1) 1 (6)
Partner 1 (1) 1 (2)
Health care provider 6 (7) 6 (100)
Total 84 (100) 51 (100) 10 (100) 17 (100) 6 (100)

Their understanding and misunderstanding of medical knowl- choices and to feel like [italics added] it is their choice and not
edge, barriers to understand illnesses, and perception of treat- me or someone else telling them what to do or how to do it.
ment outcomes follow.
It was clear that the HCPs’ goal was for the patients to have
‘‘a clear understanding and better acceptance of what [wa]s
Health Care Provider’s Perspective on Treatment Decision Making.
going on.’’ They also stated that they would take time for that
Health care providers believed that patients autonomously made
goal.
treatment decisions. The HCPs stated that their role was to

give [the patient’s medical] information in a way that a person can Patient and Family’s Perspective on Treatment Decision Making.
understand it so that they can use information to make their own In contrast to the HCP’s intention, the patients’ and families’
Colclough and Brown 507

Table 2. Demographic Data of All Patient Cases.

Patient cases, n ¼ 65 (%) Group 1, n ¼ 45 (%) Group 2, n ¼ 10 (%) Group 3, n ¼ 14 (%)

Gender
Men 31 (48) 24 (53) 5 (50) 5 (36)
Women 34 (52) 21 (47) 5 (50) 9 (64)
Age
40-49 9 (14) 1 (2) 5 (50) 4 (29)
50-59 16 (25) 12 (27) 2 (20) 3 (21)
60-69 10 (15) 7 (16) 1 (10) 2 (14)
70-79 15 (23) 11 (24) 1 (10) 4 (29)
>80 10 (15) 9 (20) 1 (10) 1 (7)
>40 but unknown 5 (8) 5 (11)
Medical diagnoses
a
Lung 14 (22) 11 (24) 1 (10) 3 (21)
Breast 10 (15) 4 (9) 2 (20) 4 (29)
Stomach 7 (11) 4 (9) 1 (10) 2 (14)
Brain 4 (6) 3 (7) 1 (7)
a
Prostate 3 (5) 2 (4) 1 (10) 1 (7)
Blood 2 (3) 2 (4)
Colon 2 (3) 2 (4)
Cervical 2 (3) 1 (2) 1 (7)
a
Ovarian 1 (2) 1 (10) 1 (7)
a
Testicular 1 (2) 1 (10) 1 (7)
Bone 1 (2) 1 (2)
Unspecified cancer 6 (9) 6 (13)
Heart 2 (3) 2 (4)
Lung 2 (3) 1 (2) 1 (10)
Kidney 1 (2) 1 (2)
Liver 1 (2) 1 (2)
Other 6 (9) 4 (9) 2 (20)
Length of illness
<3 months 5 (11) 1 (7)
3 to <6 months 1 (2) 1 (10) 1 (7)
6 to <12 months 8 (18) 2 (20) 1 (7)
1 to <2 years 4 (9) 3 (30) 2 (14)
2 to <5 years 8 (18) 2 (20) 2 (14)
5 to <10 years 3 (7) 2 (20) 4 (29)
>10 years 5 (11) 2 (14)
Unknown 11 (24) 1 (7)
Perception difference 3 pairs (5)
Place of death
Hospital 20 (44)
Home 12 (27)
Hospice 5 (11)
Nursing home 4 (9)
Missing data 4 (9)
Religion
Catholic 26 (58) 9 (90) 11 (79)
Native 2 (4) 1 (7)
Both 3 (7) 1 (10)
Methodist 1 (2)
Missing data 13 (29) 2 (14)
a
An overlapping patient case with group 3.

perceptions differed. Patient and family participants stated
that the patient’s physicians made the treatment decisions
for them. When the patients visited their physician alone
(minority cases) or with family (majority cases) to hear their
diagnosis or prognosis, their state of mind was described as
‘‘in panic,’’ ‘‘numb,’’ with ‘‘no time to think’’ in the case of
a cancer diagnosis. A preceding discussion between the
patient and the family while waiting for the test result was
never mentioned in all the interviews. The diagnosis and
treatments were given to them; they did not further elabo-
rate on the process of the treatment decision making even
when prompted.
508
Understanding and Misunderstanding. The patients’ level of ill-
ness understanding varied, and some patients were difficult
to assess during the interview because of their strong emotional
state with reminiscence. The knowledge sources of medical
information for the majority of the patient and family partici-
pants were limited to experiences of their own, their relatives,
and/or an acquaintance in addition to a brochure they received
and a few nurses whom some of the participants met. Only 5
family participants described their sources to understand about
medical information and illness processes along with the phy-
sicians’ explanation. One used the Internet after hearing the
diagnosis, another used a combination of questioning of the
physicians and the Internet, and the rest gained the information
through relatives who worked in a health care field.
Critical misunderstandings that the community people
might have regarding treatment decision making were identi-
fied during the interviews. This occurrence may be partially
due to oral tradition and trust relationships among the commu-
nity people. In oral tradition among trusted people, the words
based on their perceived experience carry higher value than sci-
entific evidence. For example, the information related to a kid-
ney transplant was mixed with that of a liver transplant. An
HCP described a diabetic patient who started using insulin just
before the amputation of his leg. His relative misunderstood the
insulin treatment as perilous by connecting it with the
amputation.
Overall, the majority of the patients and families expressed
their sadness with a life-threatening medical diagnosis of self
and their ill family members, but it was uncertain whether they
reached a clear understanding and acceptance of the illness beyond
the words associated with the actual diagnosis. They expressed
frustration regarding the one-way communication, ‘‘We did not
understand what would happen, what it meant.’’ Thus, it would not
seem that they were able to make informed decisions.
Barriers to Understand Illness. Although the following analyses
were a combination of the patients’ view and the family’s view
of the patient, patients’ barriers to understand and accept the ill-
ness were (1) a belief in healing, (2) being in denial or a depres-
sion stage, and (3) questioning ‘‘why me?’’
I thought I had a hernia, because I’m naval, in the military. I used to
lift a lot. I thought it was just something like that . . .
He thought it was frost in his lungs, you know, years before he
actually went into the hospital. He may have actually went to the
hospital and never told anybody . . .
Even though their emotional states were in turmoil, some
patients kept the diagnosis secret from their family for up to
a year. The reasons for this secrecy included (1) maintaining
privacy and (2) avoiding financial, physical, and emotional
burdens on the family.
. . . that was the kind of guy he was. He didn’t let anybody know his
personal, his personal . . . what he was doing about things.
American Journal of Hospice & Palliative Medicine® 31(5)
. . . But if she wanted to pay for it herself she could go [to
another facility]. And, of course, she didn’t have the money.
And she wouldn’t ask us kids. She wouldn’t put us through that
burden. So, that was one of the reasons she kept it secret from
us too.
The data indicated that the time frame for patient’s accep-
tance ranged from immediately to yet to happen, in which the
patient was in a prolonged state of grief. However, most of the
patients accepted their diagnosis earlier than their family
members.
The family’s understanding and acceptance of the patient’s
illness occurred sooner in older patients than in younger
patients. The family’s barriers to understanding and accepting
a patient’s illness included (1) unpleasant emotions (eg, anger
and resentment) and (2) mental states (eg, denial and selective
hearing). Their level of support for the patient reflected their
level of acceptance of the patient’s illness as those who could
not accept the patient’s illness took nonsupportive actions or
self-destructive behaviors.
Well, of course, right at first it was really a shock, and I was angry
at the doctors and the hospital. And I was even angry with her for
not letting me know . . . .
My mother went into a shell to where she just sat in a corner
and stared at my dad. I think she was in so much denial, and
had so much hope, and that this wasn’t possibly happening to
our family . . .
While recognizing the patient’s strength, the HCPs observed
family’s difficulty accepting the patient’s illness in about half
of the patients in their practice. They described the scene rather
objectively, implying they wished the family could have
accepted the reality sooner. Although they understood the
family’s vulnerability, they expressed that extreme emotional
reactions by some family, coupled with no discussion among
the family, had prevented their effective interventions to assist
the family. They identified that such reactions were usually
based on regret, denial, or the dysfunctional nature of the
family.
The majority of the patient and family participants recalled
that the patient’s physicians made the treatment decision for
them. No second opinion was sought because ‘‘[w]e do not
know that the patient’s autonomy can exist in a treatment deci-
sion. There is no second opinion [system in IHS]. Since we do
not know it, how can we practice it?’’ Without realizing their
right to choose, the patient and family participants followed
whatever the physician said to them with or without an under-
standing and acceptance of the illness. After about one-third of
the interviews were completed, the AP found that the interview
data did not give her any structure or steps of the treatment
decision-making process for analysis. A direct question, ‘‘Do
you feel that doctor’s suggestion or recommendation is the
decision of treatment?’’ was asked of some of the participants.
The following quote illustrated their view of, and relationship
with, physicians:
Colclough and Brown
Oh my gosh, we put doctors up on a pedestal; we believe that
they’re next to God. I hate to say this, but yeah. The sad thing
about Indians is, a doctor will tell you how high to squat, and
we will squat. They’ll tell you how low, and we’ll do it low.
We believe them wholeheartedly. What they say, we listen. They
don’t know we do, but we do. We may not pay attention to them;
we may not look them in the eye because we’re afraid of them. Or
. . . I’ve seen it, I’ve witnessed it. We do place doctors in a high
stature, above us. But they don’t listen to us. They don’t really
understand us as native people. They talk down to us because
they’ve seen the drunks go in there on a daily basis, they’ve seen
the pill-poppers, they’ve seen the addicted, they’ve seen the
crime, they’ve seen the abuses, they’ve seen a lot, and they’ve
lumped us all in one category. We are still kind of the low totem
pole, third-world country people to doctors that come from out-
side. We’re rude. Basically, we’re ignorant, yet there are some
intelligent Indian people in this town that can speak to doctors,
that know how to, and I try to–I notice when I talk to doctors,
I will tell them how I feel with my body, and they’re like . . .
Because I can go in there and tell them what’s wrong with me, and
they’re like, ‘‘No. How do you . . . ’’ I’m like, ‘‘This is my body. If
I get cut, I’m the one who feels pain, not you. Yes, you have the
smarts to where you know the ins and outs, but I’m the one
experiencing it.’’ And they don’t want to hear that. Do you see
what I mean?
This participant shared their growing awareness of their
right to choose.
Perceptions of the Outcomes. Six participants appraised the IHS
describing the rapid treatment decision-making process after
the cancer diagnosis was given. Four participants stated that the
patients who made the autonomous decision included 1 patient
that had an excellent relationship with her physician and
3 patients who had metastasis or whose treatment became phy-
sically burdensome. A handful of participants expressed their
resentment and regret related to the patient’s illness mainly
because of delayed diagnosis and treatments. The reasons for
the delay included (1) the postponement of a revisit due to the
long waiting time at the IHS hospital; (2) unclear or missed
diagnosis with futile medication treatments; (3) lack of a thor-
ough examination on the reservation; and (4) feeling of aban-
donment by the US government due to the limited IHS
budget, leaving no other access to health care. Even if the
outcomes were not as they had desired, the majority of the par-
ticipants perceived the treatment decision and its outcomes as
neutral despite their perceptions that the physicians made treat-
ment decisions for them.
Discussion
Our work clearly revealed that the concept of a patient’s auton-
omous decision making regarding medical treatments rarely
existed in the collected end-of-life experiences among Ameri-
can Indians in the partner tribe. While the patient and family
participants respected a physician with allopathic knowledge,
their associated perception of a physician as an authoritative
509
power figure appeared to have suppressed their self-worth. The
definition of medicine by one American Indian as ‘‘the inherent
power within all things’’41 rather than a more specific and lim-
iting meaning as is used in English might have augmented their
perception to medical doctors. As such, their experience was
similar to the ancient Greek and Roman model of informed
consent.2 The first significant component of informed consent,
one’s personal rights, appeared less likely to be in an American
Indian’s mind when facing treatment decisions, and they were
more likely to have accepted the diagnosis at face value.
The data analysis reflected these American Indian percep-
tions. First, a diagnosis was given to American Indian patients
rather than identified or told to them. Second, culturally ques-
tioning to the authority figure was not an option.29 Third, no par-
ticipant used the word advocacy during the interview, which is
usually used to protect the patient’s well-being from the health
care service provided. Fourth, the majority of the outcomes,
including death from the treatment decisions, were perceived
to be acceptable except in a handful of patients. This may be due
to a belief that a cyclic nature of life with impending death would
not be seen as a great struggle28 despite many participants per-
ceived a cancer diagnosis as close to a death sentence. Finally,
little blame in terms of treatment decisions was associated with
the HCP. One-way communication, physicians’ biases, or a lack
of encouragement may also have fostered a sense of having no
choice regarding treatment decisions.42 The participants’ verba-
lizations exemplified the complicated psychology in an Ameri-
can Indian’s mind as being influenced in part by cultural and
historical factors.28,30,37 They did not perceive that they were
heard or included in the process, and personal trust relation-
ships43 with the HCP were not established.
However, the assumed distrust issue between Euro-
Americans and American Indians did not appear as a primary
issue. Rather, both HCP’s and American Indians’ lack of
awareness of their psychological aspect related to the informed
consent process was identified as a key component that inter-
fered with the exercise of the rights of the American Indian
community members. Even though some reports indicated that
patients in general prefer to defer treatment decisions to their
physicians,44,45 this finding of American Indians was very rare
in the literature (ie, withdrawal of the treatments,46 some immi-
grants,47 and emergency cases in France8).
Further, although the existence of metastasis or an intoler-
able physical condition from the first treatments contributed
to participants making their own decisions, the second compo-
nent of informed consent, information, was not perceived to be
adequate by the American Indian participants, or they were per-
ceived by their physicians to be less capable of making a
desired decision. A two-way knowledge exchange was less
likely to occur between the HCPs and the patients and families,
and the fewer interactions between them, the poorer the out-
comes in quality end of life in other studies.43,48-50 Without
rational reasoning or adequate knowledge, decision making
and quality of life would not be optimized, because emotions
and life experiences would not reflect one’s values to weigh
risks and benefits in terms of medical choices.15
510
In this study, health literacy, a continuously used definition
in Healthy People 2010, ‘‘the degree to which individuals have
the capacity to obtain, process, and understand basic informa-
tion and services needed to make appropriate decisions regard-
ing their health,’’51 was found to be at a low level. However,
due to contextual and historical issues including researchers’
exploitations and negative reports on American Indians without
benefit to them, the team decided not to label the findings using
health literacy. The team acknowledged that the concept could
be informative to develop possible solutions and interventions
using available online resources of this government site.52
In addition to previously recommended guidelines,27,28,49,53
this study’s findings lead to the following 2 recommendations.
(1) The cultural sensitivity, attunement, or humility of HCPs
needs to be further improved, particularly regarding the fact
that American Indians may not be aware that autonomous deci-
sion making is welcomed in medical treatment. With training
of this awareness, HCPs should seek an exchange of informa-
tion using understandable words for the patients, encouraging
questions, and asking patients’ values and preferences. By
focusing on the personal and emotional aspects of the patients
and families and building a trusting relationship,54 HCPs can
move incrementally toward a fair informed consent process
within any shared decision-making model.7,8,48 (2) The aware-
ness of American Indians, in relation to the option of autono-
mous decision making in health care situations, should be
increased.55 Family discussion prior to the doctor’s visits, ques-
tioning of the physicians, and acceptance of diagnosis with fur-
ther testing opportunity could be encouraged as long as
individuals feel comfortable. Informative training programs
(ie, how to ask a question of physicians; how to seek informa-
tion to gain an understanding of an illness, treatment, and/or
associated changes [eg, patient’s mentality]; how to care for
patients in the terminal stage of an illness, etc) could empower
the patients and families and improve their end-of-life
experiences.
The IHS hospital in the partner tribe started a self-care
awareness project in December 2011, and this project should
be continued and supported. Encompassing the educational
ideas and training programs addressed in this article, the ‘‘Hos-
pice Care on the Reservation’’ project was created. However,
its development has been on hold due to financial and organi-
zational challenges. The team has initiated its continuous
development by developing larger collaborative partnerships
and applying external funding.
This study had limitations. First, neither HCPs from the
Contract Health Service program (care provided outside of the
IHS facility) nor traditional medicine providers were included
in the study. Second, unclear cultural nuances between the par-
ticipating American Indians and the non-Indian AP might have
affected the data collection and analysis. However, employing
the principles of a CBPR approach and the maintained trust
relationship between the AP and the team members and com-
munity people more likely helped overcome this limitation.
Third, limited generalizability to other tribal nations is possi-
ble. The purpose of the study was to provide information to
American Journal of Hospice & Palliative Medicine® 31(5)
develop a culturally specific intervention for this tribal nation.
Therefore, the findings are helpful as they were uniquely iden-
tified from within the context of one tribal nation within the US
population using a CBPR approach.
Conclusion
American Indians’ perceptions regarding end-of-life treatment
decision making could reflect cultural and historical factors.
This possibility may be consistent when thinking about the
self-determination act56 and sovereignty of the American
Indian Nations.57 Sharing sufficient and accurate information
and knowledge with tribal people could enable them to assure
that their wishes and desires are better reflected within health
care decisions. It is hoped that, soon, all American Indians can
perceive they have a choice, ‘‘I made my decision’’ or ‘‘I defer
my choice to others.’’
Acknowledgments
The authors would like to express appreciation to the research partici-
pants, the tribal council, the research team members, and the col-
leagues at MSU for their support.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for
the research, authorship, and/or publication of this article: This work
was supported by the National Institute on Minority Health And
Health disparities [grant number P20MD002317] and the LIVES-
TRONG Foundation.
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