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This is to certify that the

thesis entitled

An Interpretive Analysis of Hospice Underutilization
By Mexican Americans in Lansing, Michigan:
En Sus Proprias Palabras (In Their Own Words)

presented by

Lisa M. Topoleski

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Interdisciplinary
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AN INTERPRETIVE ANALYSIS OF HOSPICE UNDERUTILIZATION BY
MEXICAN AMERICANS IN LAN SDIG, MICHIGAN:

ENSUS PROPRIAS PALABRAS (IN THEIR OWN WORDS)
By

Lisa M.Topoleski

A THESIS
Submitted to

Michigan State University
in partial fulfillment of the requirements for the degree of

MASTER OF ARTS

Interdisciplinary Program in Health and Humanities

1997

 

ABSTRACT
AN INTERPRETIVE ANALYSIS OF HOSPICE UNDERUTILIZATION BY
MEXICAN AMERICANS IN LANSING, MICHIGAN:
EN SUS PROPRIAS PALABRAS (IN THEIR OWN WORDS)
By

Lisa M. Topoleski

This study looks at the undemtilization of hospice by elderly Mexican American
women in Lansing, Michigan. The hospice literature refers to “barriers” as reasons why
Mexican Americans do not use hospice and discusses three difi‘erent categories:
curanderos, familismo and fatalism. This study analyzes the claims made by the hospice
literature and tests its validity by interacting and interviewing Mexican American elderly
women at Lansing, Michigan’s Christo Rey Community Center.

The results Showed that the claims about familismo and fatalism were still
important elements which affected the women’s beliefs on death and dying and the use of
hospice; however, there was no reported use of curanderos. It was also shown that there
is not a “need” for hospice, for an informal hospice already exists. Therefore, in order for
hospice to understand the underutilzation of its services, it is necessary to speak to the
people of minority communities. In this way, they are able to tell, in their own words (en

sus propn'as palabras), of their need for help in dealing with death and dying.

 

In loving memory of my Grandmother Catherine Topoleski (1912-1997).
I would like to express my greatest admiration for her dedication to family, desire for
education, and her incredible faith.

iii

 

ACKNOWLEDGMENTS

Various individuals are to be acknowledged for their contributions to, and support
for this thesis. Throughout the thesis process it was the guidance of my thesis committee
which enabled this thesis project to become complete. It was upon the expertise and
judgment of these individuals that I depended for direction and guidance throughout the
thesis process. Without the vigorous support of these individuals, the thesis could have
never become a reality.

Special appreciation goes to my thesis advisor, Jacob Climo, PhD Anthropology,
whose encouraging words guided me through this endeavor. Additional appreciation is
also extended to my other committee members, Donald Koch, Ph. D Philosophy, and
Refugio Rochin Ph. D Sociology and Agriculture Economics; Director of the Julian
Samora Research Institute, for their cooperation , support and advice.

Special acknowledgment is extended to Toni Diaz the director of the senior
citizens program at the Christo Rey Community Center Who warmly welcomed me into
the center enabling my interaction with the community. Also, one cannot forget the
women who participated in my thesis. Without their sincere words and honesty this study
could not have been accomplished. As teachers, their words and stories taught me more

than they will ever know.

 

Lastly, I would like to extend appreciation to my parents. Their contributions to
the final draft of my thesis went above and beyond the duties of a parent. Your love and
support throughout this trying process gave me the confidence to finish what has been a

great accomplishment.

 

TABLE OF CONTENTS

INTRODUCTION .......................................................................................................... 1
Chapter Summary ................................................................................................ 7
CHAPTER ONE - WHAT IS HOSPICE? ..................................................................... 10
CHAPTER TWO - METHODS .................................................................................... 16
Interpretative Approach .................................................................................... 16
Thick Description ............................................................................................. 17
Narrative ........................................................................................................... 18
Population Identification ................................................................................... 24
Christo Rey ....................................................................................................... 25
Interview Guidelines and Possible Interview Questions ..................................... 27
Field Work Hurdles .......................................................................................... 27
Description of the Five Primary Participants: The Teachers .............................. 31

CHAPTER THREE- RESEARCH FINDINGS ............................................................ 34
Folk Medical Beliefs (Curanderos) .................................................................... 34
Fatalism and Religion ........................................................................................ 36
Familismo ......................................................................................................... 41

CHAPTER FOUR-

DISCUSSION ......................................................................................................... 46
Overview ......................................................................................................... . 46
“Barriers” .......................................................................................................... 47
Cultural Relativism ........................................................................................... 49

CHAPTER FOUR- CONCLUSION .............................................................................. 61
General Implications ......................................................................................... 6]
Areas for Further Research ............................................................................... 64

APPENDICES
Appendix A-Interview Agenda ......................................................................... 67
Appendix 8- Que es Hospicio? ....................................................................... . 69
Appendix C- Forma de Consentirniento ........................................................... 71

 

Appendix D- What is Hospice? ....................................................................... . 73

Appendix E- Consent Form ............................................................................. . 75
LIST OF REFERENCES
List of References .......................................................................................... . 77

 

INTRODUCTION

This thesis project looks at the lack of utilization of hOspice services by Mexican
Americans in Lansing, Michigan. More specifically, why Mexican American elderly
women in Lansing, Michigan are not using hospice. Is it because of their cultural beliefs,
as the hospice literature eludes, or is it simply a lack of need? This study will explore
possible reasons why this phenomena exists. The goal of this study is to gain an
understanding of the Mexican American traditions from within their own cultural context,
while also testing the Mexican American cultural labels discussed in the hospice literature.

Looking more closely at previous studies on the underutilization of health care by
Hispanics shows that Hispanics do not fully utilize health resources (Tajalli, 1984;
Barrera, 1978; Garcia and Juarez, 1978; Torrey, 1972) and, if they do, it is at a much
lower rate than their Anglo counterparts (Chambliss, 1990). Therefore, Mexican
Americans as a subgroup of Hispanics, also underutilize hospice. The National Hospice
Organization (NHO) reported that many of America’s temrinally ill have little or no access
to hospice care and that African Americans, Pacific Island/Asian Americans, Hispanic
Americans, American Indians Alaskan Natives and other people of diverse backgrounds

are at special risk because of their non-mainstream status (NHO, 1994).

 

Also in a 1992 NHO study listing the ethnic percentage of hospice utilization, it was
reported that the utilization of hospice by whites was 85% compared to 9% African
Americans, 3% Hispanic and 3% what they call “other” (NHO, 1992). The hospice
caregivers in Lansing, Michigan have also expressed concern over the underutilization of
hospice by minority groups. When hospice manager Susan Pen] was asked what she
would most desire to research about the current hospice program, she said with a
concerned expression, “1 have always been interested in why the majority of our clientele
are Anglo-Americans? IfI were doing a research study, I would investigate the question
of why more minorities are not using hospice and then suggest what we as hospice
caregivers could do about this situation?.”

Susan’s concern soon became my concern and by and large the foundation of this
thesis study. First, I researched local statistics in order to help confirm the concern stated
by the NHO and the Lansing hospice manager. I found that there are four hospice
organizations in the Lansing area. Three are affiliated with the three local hospitals:
Sparrow Hospital, St. Lawrence Hospital, and Michigan Capital Medical Center. The
fourth hospice organization, Hospice of Lansing, is an independent agency. I attempted to
gather statistics from the area hospices on the ethnic utilization of hospice services, but
found that there was no adequate record of this information. By word of mouth estimates,
Sparrow Hospital hospice noted that last year 100% of their patients were Anglo
American and Michigan Capital Medical Center’s hospice reported that groups other than
Anglo Americans that used hospice in the last year could be “counted on one hand”. St.
Lawrence and Hospice of Lansing were unable to give statistics because as one hospice

resource noted. “They are unaware of the patient’s ethnicity and, by policy are not able to

ask what ethnic group the patient belongs to.”

This identification procedure brought concerns about the exact nature of the
NHO’s statistics on the ethnic utilization of hospice services. The NHO[sdl] reported that
the numbers were the product of a random sampling study which was sent out to local
hospices. Therefore, the lack of knowledge by the local hospices in Lansing, Michigan
lead me to believe that there is a significant issue worth researching. The local hospices
were quick to report that they were caring for mostly Anglo American clientele; however,
they did not have exact statistics to prove these statements. This fact leads me to believe
that because ethnic groups using hospice are in the minority, the Lansing area hospice
providers are not even aware of the need to research reasons why a more diverse clientele
does not exist.

The word of mouth estimates and reported NHO statistics present a notion of the
issue at hand. More specifically stated, Why don’t minority groups use hospice services? I
will attempt to look at this question targeting specifically the Mexican American
population in Lansing, Michigan.

Unfortunately, the literature does not clearly reflect the reasons why Mexican
Americans do not use the hospice option. Traditionally, studies explained Mexican
American health behaviors by looking specifically at their cultural traits (Clark, 1959
Saunders 1954), such as familismo or “taking care of their own”, the use of folk healers,
called curanderos, and strong religious beliefs or what is often referred to as fatalism.
These traits have fi'equently been used to explain Mexican Americans lack of utilization of
health services. Literature specific to Mexican American cultural beliefs about death and

dying make similar conclusions. Reference is made to cultural concepts such as a

relatively strong concern with the family (familismo), the importance of positive
interpersonal interactions (sirnpatica), and a belief there is little an individual can do to
alter fate (fatalisomo) (Crowley, 1993). The current literature generally cites such
explanations as possible reasons why Mexican Americans do not use hospice.

I agree that these general cultural traits are important in order to orient oneself in
relation to a different cultural belief system; however, it should only be used as an
interpretation, not an explanation, of a group of people. Generalizations about a particular
culture should not be used to explain something as complex as the group’s utilization or
lack of utilization of a health service. Giachello, (1985), notes that too often in the
literature, ethnicity and cultural explanations are positioned as the reasons for low
utilization of health care services when social class explanations are more persuasive. The
former blames the victim, while the latter blames the system. (Giachello, 1985) Although
I realize that other factors such as the social class struggles of the Mexican American
population may have a great effect on the utilization of health services; however, because
of the narrow scope of this study I am simply attempting to validate or refiite the
literature’s claims of the cultural “barriers” to hospice.

A central point of this thesis is to recognize the need to understand Mexican
American’s cultural beliefs about death and dying from their own perspective. Therefore,
allowing Mexican Americans to deal with death, not the way we or hospice organizations
believe that they ought to, but in their own way. Moreover, standards can be applied in
judging good and bad or right and wrong which are relative to the cultural background of
the person making the judgment. Every culture has its own definition of what defines a

“good” death and needs to be understood that way.

The individual Mexican American voice needs to be heard. Yet, the available data
and interpretations look past narratives. This short-sided view may add to the reasons
Why caregivers are perplexed about the underutilization of hospice by minorities. Instead
of assuming that the plight of the “other” exists because of conflicting cultures, I propose
that as researchers we listen, interact, and converse with the people, who in a sense, may
not be as difierent as they seem.

As Arthur Frank writes in his book, The Wounded Storyteller, we are living in
“post-modem times” and the “post-modem times” in which we are researching have
changed. For within these post-modem times is the demand to speak, rather than being
spoken for, and to represent oneself, rather than being represented and being efi‘aced
entirely” (Frank, 1995). Frank is referring to the ill body and the need for the persons
belonging to those bodies to be heard. In a sense, the Mexican American community is
being treated like these ill bodies. They are not being given their true voice. Instead,
assumptions are made about them. We are living in “post-modem times” where Mexican
Americans face rapid change. We can no longer accept stereotypes for their behavior and
beliefs. Mexican Americans are living in America and are experiencing society and culture
as it changes. Each one of us, embodies different beliefs and traditions; however, often a
priori assumptions are attached to a person because of his/her ethnicity. Stereotypes are
given before the person even has a chance to speak for him/her self.

As an example, not all Mexican Americans hold the traditional beliefs so often
associated with Mexican American culture. One of the most frequently referenced
characteristic of the Mexican American culture is the cultural concept of “taking care of

our own”. However, if taken as an a priori assumption this cultural assumption silences

the voice of the people that we are trying to understand.

Some hospice literature suggests that Mexican Americans do not use hospice
because they are a close knit community who prefer to take care of their own (Gordon,
1995; Noggle, 1995; NHO, 1994, Crowley, 1993). However, in a group setting of
seniors at Christo Rey Community Center-Lansing, Michigan, where I defined the hospice
philosophy and told them how it could serve them, I asked if they would use hospice. The
respondents unanimously answered they would use hospice. Their concern was that if
they were to get sick tomorrow they would not know who would take care of them.
Separation of family and the need for their children to have their own lives lead to this fear
of care in old age. They would not want to burden their children.

Were these women simply responding to my questions by telling me what I wanted
to hear? In doing qualitative research this is always a concern. However, by spending
more time with the women and establishing a relationship, the problem of simply
acknowledging questions can be minimized. I believe that in order to properly do
qualitative research, a relationship is needed between the researcher and the respondents.
As I report later, the view of these women changed from a unanimous yes, mentioned
previously, to mixed views of animosity towards an idea like hospice, to be discussed
later. Therefore, the idea of “taking care of our own” cannot be taken as absolute.

Acculturation into American society and the economic need for families to
separate confirms the necessity for researchers and clinicians alike to listen to people of
minority communities. “Acculturation is the dynamic process that occurs when two
autonomous culture groups are in constant contact with each other leading to changes in

one or both cultures this can occur on two levels; at the level of the group and at the

 

level of the individual” (Berry, 1980).

In order to gain an understanding of their needs, communication is essential. The
diversity of culture must be realized. In a society which is always changing, the need for
qualitative research is necessary. Therefore, when two groups, such as the Mexican
Americans and the Anglo Americans, coexist they are mutually influential, although not
necessarily the same (Negy and Woods, 1992). Consequently, one cannot use assumed
cultural generalizations as a reason why Mexican Americans are not utilizing health
services; in particular, hospice services. The Mexican American culture, as with most
cultures, is always evolving. Dynamically, their culture changes and readjusts providing
new meanings. They struggle to find their place within the Americans society in which
they live. It is this concept of one culture living within another culture which strongly
shows the need for narrative research. Because acculturation is a constant dynamic
process which happens at varying degrees, the only way to understand a culture like the
Mexican American culture is to use narratives and converse with them.

Basically, I want to show the importance of letting a culture speak for itself. Only
then can one interpret and try to answer the question of why Mexican Americans are not
using hospice.
new

In chapter one hospice is defined by discussing the history of hospice, its
regulations for treatment, and its philosophy relating to death and dying. The chapter
provides an overview of the service of hospice, as well as pointing out the philosophy of

hospice as it stems from being affiliated with the western medical system.

 

Chapter two is the methods chapter. Here it is pointed out how the thesis
question: Why Mexican American elderly women in Lansing Michigan do not use
hospice?, is addressed. Within this chapter the interpretative approach including the use of
narratives, thick description and cultural relativism is introduced and explained. The
chapter also provides the methodology of how narratives were obtained. Questions
relating to the three categories of fatalism, fanrilismo, and curanderos are given as
guidelines for interview questions in order that that thesis question will be properly
addressed. Also, sections on field work hurdles and a brief descriptions of the five
primary participants are included.

In chapter three, Research Findings, narratives are presented under the categories
of fatalisnr, familismo, and curanderos in order to bring out the women’s cultural beliefs of
death and dying.

Chapter four discussed the importance of the narratives. Results showing that
religion and family are still strongly felt traditions are reported. Curanderos, on the other
hand ,were shown to have no effect on the utilization of hospice. Within the discussion
chapter the hospice literature’s claim the there are “barriers” to hospice is argued with the
help of cultural relativism.

Chapter six concludes the thesis by suggesting the need for an interface between
hospice and the Mexican American community. Here, the narrative of a younger Mexican
American women who used hospice services is presented and analyzed. The narrative
exemplifies the importance of change and acculturation

Also discussed in the conclusion are suggestions for fiirther research on this topic.

In areas of flirther research it is discussed that there are other variables and topics that are

essential to the thesis question and also need to be addressed
My conclusion is that hospice may become a service utilized more frequently by
the Mexican American people, but only when its philosophy and purpose is defined and

has meaning within the Mexican American community.

Chapter One

What is Hospice?

In order to set a firm foundation for this study it is necessary to provide a
definition of hospice and to discuss hospice organizations and their services. Hospice is
defined as a special way of caring for a person whose disease cannot be cured. The focus
is on care, not cure. Emphasis is on helping the person to make the most of each hour and
each day of remaining life by providing comfort and relief from pain. Not only does
hospice believe in helping the patient deal with dying, but they also provide support for the
family members during the dying process. Hospice is a shoulder of support. The
admissions coordinator of Lourdes Hospice talks about the benefits of hospice by saying,
“I’d like people to understand that the whole purpose of the hospice program is to help.
We judge our success on whether we’ve been able to help you. I hear people say to me
over and over, ‘We need some help.’ I would hope that any hospice anywhere would be a
resource and a help to you.”

Hospice is normally run by an interdisciplinary care team of health professionals
including nurses, physicians, social workers and spiritual counselors. Hospice also relies

on its many volunteers to provide support for the patient and the family.

10

11

Those who are unfamiliar with hospice sometimes ask if hospice is a place? An answer to
this commonly asked question is that hospice is not a place where patients go to die. It is
a service that provides care wherever the patient lives.(Beresford, 1993) However, there
are difl’erent models of hospice. The community-based model, which is what Hospice of
Lansing would be considered, is a nonprofit corporation governed by a community board
of directors in order to meet the needs of the dying in the community (Beresford, 1993).
Community-based hospices have the financial disadvantage of not being afiliated with a
larger organization. Michigan Capital Medical Center and Sparrow Hospital in Lansing,
Michigan are considered home health agency based hospices. These organizations may
ofl’er home healthcare, but do not include all of the benefits of hospice care. Only the
hospice alternative provides the benefits of the whole hospice philosophy of comfott care
and spiritual help. St. Lawrence hospice is considered an example of a hospital-based
hospice model. In this model, hospices are administratively part of a hospital corporation
(Beresford, 1993).

Another frequent question asked is what are the eligibility requirements of hospice.
In order to be considered for hospice care, the patient must have been given a diagnosis of
a terminal illness, usually measured by a prognosis of six months or less left to live. The
patient must be seeking comfort care, rather than treatment aimed at cure. The patient
and the family must be informed about hospice and other options and give written consent
for hospice care. Hospice also must be provided in a safe setting for care and, most
importantly , the patient must elect the “Do-Not-Resuscitate Order”. Individual hospice
may have other requirements, but these criteria provide the general requirements for most

hospice organizations.

12

A question that could become an argument against the objective of this study is
how does one pay for hospice. The concern is that some people including Mexican
Americans do not use hospice because of cost. Although hospice is available as a benefit
under Medicare Hospital Insurance (Part A) some would say that as a group Mexicans
Americans are not well insured and are not receiving the Medicare benefit. This may seem
to be interpreted as a barrier. However, according to information taken fiom Michigan
Capital HealthCare Home-Based Services Visiting Nurse Services Hospice Brochure- “Is
Hospice an option for me?, ” no one is refiised for inability to pay.

This background information is intended to help understand the hospice
philosophy, hospice organizations and the services provided for the patient. The hospice
alternative is an option that should be widely disseminated to all ethnic groups.
Communication and education are key factors in this goal. However, even if the ethnic
group understands hospice and its philosophy, this does not necessarily mean that
individuals within this group will choose it as an option. By educating the community and
allowing them to define hospice from within its own cultural constructs enables individuals
and families to make an informed choice about the use of hospice.

Historically, hospice programs started small and grew slowly to ensure that the
care they provided was of high quality; even if that meant not being able to serve everyone
who wanted it (Beresford, 1993). Therefore, hospice was a service which dealt generally
with upper and middle class sectors of society. However, with the expanding success of
hospice services it is realized that more than just the upper and middle class need high

quality care in dealing with death and dying.

13

Today, hospice is an organization which believes that everyone has the right to
receive their benefits. Therefore, they see the need to tackle the problem of
underutilization. Hospice now understands the need to reach out to diverse minority
groups and realizes that there are overwhelming statistics which point toward their service
being utilized dominantly by a population that is disproportionally white, middle class and
suburban ( NHO; Beresford, 1993; Harper, 1991; Noggle, 1995). The literature refers
to this underutilization phenomena as “barriers” to hospice care (Beresford, 1993; NHO;
Noggle, 1995; McDonald, 1991).

I will explore, on a community level, if there really are cultural “barriers” as the
literature suggests. If so, what they may be in relation to the Mexican American
community in Lansing, Michigan. Fundamentally, I want to know why the people of the
Mexican American community are not using hospice and not just automatically relate the
reasons to cultural labels. However, all too often these cultural assumptions are used as
explanations for the underutilization of health service and Mexican Americans as
individuals are generalized belonging to a group. Although the hospice literature
recognizes that there is a problem of underutilization of hospice by minorities, does it
recognize the importance of the plurality of culture?

Most would agree that hospice is seen as a beneficial service which should be
provided to everyone equally. However, one must remember that hospice is a service
which fits into the Western concept of medicine and defined fi'om within it. The hospice
movement has been referred to as a “grass roots reform movement, a response to a rising
consumer demand for more control over health services; a religious movement, an attempt

to return spiritually to the dying process; and a professional movement, an effort by

l4

nonphysician healthcare workers to rebel against authoritarian hospital systems” (Siebold,
1992). Therefore, it was established for a number of reasons and attracted participants by
“virtue of one or all of these conditions” (Siebold, 1992). The social conditions which
fostered the hospice movement dealt primarily with the people using its services.

Hospice has a goal of attaining a “good” death. Its philosophy puts forth the ideal
of death with dignity in order to provide a humane way to die However, the hospice idea
of a “good” death was constructed from a social need for death with dignity and without
pain and sufl’ering in a society which seeks to improve the quality of life at all costs. “The
twentieth-century consumer of medical care expects physicians to ameliorate pain and
sufl'ering. As a nation, we seem particularly vulnerable to the expertise of professionals.
This is perhaps part of the belief that all things in life can be reduced to logical
parameters” (Krant, 1974).

Hospice as a philosophy defines death from within the Westernized society. A
“good death” for hospice would be one in which the patient dies a comfortable death,
most often in the cOmfort of his/her own home, where pain is eased by the help of
medicine and support is given to the patient as well as the family in order to mentally ease
the fears of death. It fits nicely into our Western cultural ideas about death. For it
represents a humane way of dying which includes the crutch of Modern Medicine;
whereby, controlling the dying process with the use of pain medication. On the other
hand, if one does not share the hospice definition of a humane “good” death or
comprehend the need for hospice, then its philosophy may not fit within the person’s
scheme of a humane death. In answering the question of why Mexican Americans are not

using hospice, the differing definitions of a humane “good” death by both the hospice

15

philosophy and the Mexican American community will come into play.

Chapter Two

Methods

The Interpretive Approach

I propose an interpretive approach to the question of why Mexican Americans do
not use hospice. The three methods included under the proposed interpretive approach
are the use of narratives, thick description, and cultural relativism. Because of the
qualitative nature of this study, the interpretive approach seems required. The people’ s
voice needs to be heard, therefore absolving the use of generalizations which tend to
depict static cultural traditions. Moreover, using narratives, the voice of the other,
cultural diversity, and thick description will provide a cultural evaluation of generalized
cultural knowledge.

Insight gained fi'om narratives and interpretations of the narratives can also provide
cultural relativistic definitions of a humane or “good” death. The interpretive approach
allows the question of why Mexican American elderly women do not use hospice to be
examined fi'om a cultural relativistic point of view. Therefore, there is no way to make
judgments across cultures. One can only approach the question by interpreting the

narratives and thick description of the people who belong to the particular culture.

16

17

The interpretive approach according to Geertz, suggests that the analysis of man should
“to he therefore not an experimental science in search of law but an interpretative one in
search of meaning” (Geertz, 1973). By using the interpretive approach cross culturally
one can hope to understand the point of view of the other by interpreting their actions,
gestures, and words as meanings specific to their people. Therefore, one single dominant
way of thinking will not dominate the other, the voice of the “Other” will be heard.
Experiences of dying and terminal illness are rarely the same, even if they belong to the
same community. The use of the interpretive approach gives narratives meaning and
allows the question of underutilization of hospice by Mexican Americans to be analyzed.
Thick Description

One characteristic of the interpretive cross-cultural approach includes thick
description. Thick description, according to Geertz, defines a kind of “intellectual effort”.
It is as an elaborate venture in, to borrow a notion from Gilbert Ryle, “thick
description”(Geertz, 1973). Thick description is the “said” of social discourse which
provides the ability to interpret narratives. It is a way in which meaning is taken from the
narratives. Thick description is an abstract term which defined, calls for the importance of
giving attention to detail.

By using thick description one gets a microscopic view of the particularities of a
certain culture. In particular, I used thick description in my interviews with the Mexican
American informants in order to interpret what they do, say and act in response to my
questions about hospice and death and dying. A laugh, a smile , a blank look, strong
words, a soft voice or a tear all helped me to interpret the narratives of the Mexican

American women. A good interpretation, according to Geertz, “uses thick description to

l8

construct a reading of what happens and must include from [smwhat in this time, or that
place, specific people say, what they do, what is done to them, from the Whole vast
business of the world. To divorce fi'om these thick descriptions is to render it vacant”
(Geertz, 1973). Thick description addresses the concern of the underutilization of hospice
by directly conversing with individuals within the culture. In this way, an intimate view of
the cultural beliefs about death and dying, family, religion, and. folk healers can be
revealed.

Are the assumptions written in the hospice literature about reasons why Mexican
Americans do not use hospice just generalizations? Is hospice care a service that Mexican
Americans deem necessary? I have approached the question, thus far, by assuming that
hospice is something the Mexican American elderly women would use if they had
knowledge and availability. I will use the analysis of thick description to test this
assumption.

In the course of my study, I specifically looked at three traditional cultural beliefs:
familismo, fatalism, and curanderos which are components of the ethnography of the
Mexican American culture. With the help of thick description, the validity of the
aforementioned traditional beliefs were tested in order to discover if they have any bearing
on the underutilizaiton of hospice.

Nagative

The significance of the interpretive approach lies in the use of narratives or story
telling. As was stated above, the main thrust of the study is to gain a greater cultural
meaning. “Traditionally, when Mexican Americans have been studied, stereotypes and

distortions prevail.” (F acio, 1996) Understanding people fiom their own personal

I9

reflections illuminates experiences which are richly diverse. Storytelling or narrative
ethics is developing into an emerging field in bioethics, anthropology, sociology and also
for use in clinical situations. The narrative approach to understanding cognition,
personality development, culture, and community is one that is emerging from several
disciplines as a way to understand human experience, memory and personal identity from
the point of view of a person in social context.

In its simplest form, the narrative approach means understanding life to be
experienced as a constructed story. The stories that people tell and are told as powerful
forms of communication to both others and one’s self (Rappaport, 1993). The narrative
ofi’ers a way to take part in a conversation where the partners can be seen as equal agents
able to claim individual truth. Narratives also offer a way of understanding individual lives
within their community context. We are living in a decade of rapid and diverse change
making narratives even more useful as a research tool. The stories that people tell
highlights the nature and functions of the community, the power of its narrative, and how
it changes. (Rappaport, 1993)

Many arguments have been made against the use of qualitative research such as
narratives. In addition, its legitimacy has been questioned (Aunger, 1995). Opponents to
the uses of narratives in research claim that it is not scientific or objective enough.
“Qualitative studies need to be placed within a technical framework which will facilitate an
efi’ective combination of the two”(Aunger, 1995). I disagree. Narratives are very much
nwded in our “post-modern times” (Frank, 1995). For those who have been objects of
others’ reports are now telling their own stories. As they do so, they define the ethic of

our times: an ethic of voice, affording each a right to speak her own truth, in her own

20

words”(Frank, 1995). No longer should people be invisible subjects that are just
answering questionnaires or being wrongly assumed to be a silent people whose voices are
not worth hearing.

For example, in a quantitative study by Kalish, (1976) assumptions are used to
explain a group’s cultural beliefs on the basis of statistical percentages of answers to a
questionnaire. His study assessed the cultural beliefs of different ethnic groups on the
topic of death and dying. Statistical numbers gained from a questionnaire were provided
as evidence for the cultural beliefs of death and dying held by that culture. Although
Kalish’s study provides guiding models of beliefs to keep in mind when interacting with
people in a particular culture, it is not a good tool for explaining why a group does or does
not do something such as utilize hospice.

In my opinion, studies like Kalish’s really have no significance on assessing a
particular group of people similar to the Mexican American community in Lansing,
Michigan targeted in my study. First of all, Kalish’s numbers were not very different fiom
the other ethnic groups interviewed and never were the numbers very different from the
Caucasian American percentages. The numbers did not provide a very convincing
argument for the relevance of his data. For example, Kalish reports that “Yet more than
the other ethnic groups, the Mexican Americans consider very important reasons for not
wanting to die to include no longer being able to care for dependents (Black
American26%, Japanese American42%, Mexican American3 7%, Anglo American44%)
and causing grief to relatives and fiiends (Black Americanl9%, Japanese Americanl4%,
Mexican American3 8%, Anglo American29%).”(P. 167) The Mexican American

statistics, M37% and M38%, are closely related to the Anglo American percentages,

21

A29% and A44%; therefore, I do not believe that one can truly say that this is a belief held
strongly or as Kalish says a “very important reason”. Therefore, quantitative data is not as
concrete, or scientifically objective as the critics claim. For, truth lies within the storyteller
and can only be realized by conversing with them. Ifmore technological statistical data is
needed in order to “prove” the truth claims of a culture then why do we even converse
with others? It is the voice of the people which is told by the Self that will help us learn
the real meaning of the Mexican Americans in Lansing, Michigan .

However, it is false to believe that using narratives can provide a complete cultural
explanation of a particular community. For to explain a community like the Mexican
American community in Lansing, Michigan would be the same as generalizing in our own
way what we want the particular group of Mexican Americans to believe. One must “not
handy the term (narrative) about or attribute mysterious powers to it, more often referring
to their work as cultural interpretation rather than cultural explanation.” (W olcott, 1990)
In the words of Geertz, “when doing ethnography, especially narrative ethnography, a
sense of facing accepted assignments destined to remain elusively beyond reach must be
realized. Cultural analysis is intrinsically incomplete, the more deeply it goes the less
complete it is. It is a science Whose most telling assertions are its most tremulously based,
in which to get somewhere with the matter at hand is to intensify the suspicion, both your
own and that of others, that you are not quite getting it right” (Geertz, 1973).

What is important in doing research with human subjects is not necessarily
requesting exact data or scientific truth claims about particular cultures but realizing that
human life is conducted in the form of narratives. The fundamental observable feature of

human life is that it assumes narrative form and can be understood, by humans, only in that

22

fashion (MacIntyre, 1981). Consequently, what could be more natural than research using
narratives. Arguments stem fiom the observation that the use of narratives in research is
not thoroughly scientific (Aunger, 1985).

Yet, just because the use of narratives requires intimacy does not mean that it is
not scientific. Even in the most objective quantitative study there is error or bias.
Therefore, distance does not necessarily mean objectivity. Results from a quantitative
study are analyzed by the researcher just as in the case of narrative data. Moreover, there
will always be some sense of bias. For example, Kalish’s quantitative study questions
about cultural characteristics were asked to a particular group of Mexican Americans.
Percentages were then calculated from the responses on the questionnaires. However, the
percentages merely give a reflection of a specific group of Mexican Americans answers to
a particular set of questions about certain cultural characteristics made up by the
researcher. The statistics merely relate to one particular behavior, inattentive to the
relevance of outside factors such as the person’s history, personality, enthusiasm etc.
Although an agenda of questions is used in obtaining narrative information, the informant
has a chance to explain and elaborate on their answers; therefore, providing a much more
rich explanation of a community’s cultural beliefs.

Basically, a wider range of information can be obtained by using narratives. For in
narratives, there are no set boundaries or questionnaire to be filled out. Without a face, a
name, expressions, or a voice, the participants seem very unrealistic. Therefore, just
because one science is distanced from the participants and one science is intimate does not
automatically make intimacy less correct. Distance does not automatically mean

objectivity. It would seen more reasonable to use narrative as a way of understanding a

23

community of humans. Subsequently, the intimate nature of narratives is what is most
natural for humans to comprehend.

In times of change, narratives also provide a way of understanding people and
hearing their voices. In a society such as ours where so many new innovations are
changing our lifestyles by the minute, narratives seem to be the ultimate way of getting at
the actual cultural context of a particular community at a particular time. Industrialization,
economics, and social values are in a state of dynamic flux. Besides, the continuous
progression of society the Mexican American community has to deal with other facets of
living in America such as acculturation and migration (Sanchez, 1995). All of these things
effect their culture and reestablish new traditions and cultural beliefs in context with the
changing times. \Vrth all of this change, the best method to get accurate answers is to go
to the source, the people. Because of this aforementioned cycle of change, narratives
allow the people of a certain community a chance to be teachers educating those who are
concerned enough to listen about the most current beliefs, cultural traditions, and ways of
life of a particular ethnic community.

There exists an ethical obligation, if you will, for the caregivers and researches
who seriously want to help the Mexican American community learn about and utilize
hospice to reach out and get to know those in the community. The caregivers must not
take assumed cultural characteristics of a culture to be true for everyone referred to under
that cultural heading. Not every Mexican American has a close family unit or has a strong
belief in God. By “playing dumb” the researcher is a blank slate who lacks the necessary
knowledge of the individual in question. Like an eager child in a classroom excited to

learn, the researcher awaits the teacher to teach him/her and fill in the blanks about there

24

culture. Therefore, without a priori assumptions clouding the mind the necessary
conversation eliciting the patient’s true feelings as an individual can be obtained. The
caregiver may mouth the words that fit with his understanding of the case, but may fail to
assess what these words mean to the patient and what image of reality is being created in
her mind (Brody, 1987). Just as in the case of the patient and caregiver, the researcher
and informant must also be aware of each others presence in the conversation.

My decision to use the narrative aspect of the interpretive approach as a
methodological option in my study is grounded in both the literature and in the type of
responses that will be elicited. The combination of thick description and narratives will be
a powerful research tool to authenticate my study.

Population Identification

Before proceeding, it seems appropriate to talk about the population referred to as
Mexican Americans. Generally, this subgroup is included under the “Hispanic” category.
However, “Hispanic” is a rather encompassing term, referring to those individuals whose
heritage is that of one of many countries of the world where Spanish is the native tongue
(Chambliss, 1990). In the United States Chicanos, Latinos, Hispanics, Americans of
Mexican decent, Mexicans, Spanish Americans, the Spanish sumamed, and the Spanish
speaking are all referred to as Hispanics (Portillo, 1990).

One person, from the Mexican American community, discussed the confusion
about identification and reiterated the point that one must use terminology carefully. For
example, the use of Chicanos to the older generation of Mexican Americans connotes a
derogatory meaning which is disrespectfiil to them. Chicano is used more fi'equently by

the younger generation. The informant said that in order to be safe the most neutral

25

terminology to use would be “Mexican American”.
As the literature suggests, there is dificulty in using an adequate term of reference. This
lack of terminological consensus reflects the varying historical, social, and political
experience of this population as a whole, and as such, represents problems inherent in any
generalized approach to Mexican Americans (Harvvood, 1981). Therefore, since there is
no definite solution to the problem of terminology for the purposes of this study and for
my review of the literature, I have tried to focus as much as possible on the Mexican
American population. However, as in the previous paragraphs above some statistics are
given only in reference of Hispanics. I will use this data taking Hispanics as a whole
group with Mexican Americans as a sub-group of the larger Hispanic population.
Christo Rg Communig Center

Christo Rey Community Center located in Lansing, Michigan is a multicultural
center which offers a variety of service programs to those in need. Although Christo Rey
services are offered to everyone regardless of race or ethnicity, the majority of its visitors
are Mexican American. A brochure published by Christo Rey lists the programs and
services available to the community.

Some of the services that Christo Rey offers are a community kitchen and direct
assistance for food, clothing, and appliances. Additionally, Christo Rey provides a
community health clinic which ofl‘ers treatment, intervention, educational information, and
diagnostic services. Other service programs include substance abuse, youth programs,
employment and training, diversion and community service, senior body and mind,

counseling and guidance, group therapy sessions, and handicap programs.

 

 

 

26

The program which I worked most closely with was the senior citizens program.
The senior citizens program offers senior citizens 60 years of age and older, with an
emphasis on Spanish speaking persons, assistance with several helpfiil services. Services
such as free meals, exercise, religious services, special events, information and referral,
immigration assistance and minor home repair. Every Tuesday and Thursday, fi'ee lunch
and dinner are ofi’ered for the seniors. It was during this activity that I spent time getting
to know the Mexican American women.

A mixture of men and women attended the breakfast gatherings; however, for the
purpose of my study I concentrated on conversing with the women. After spending
numerous days at Christo Rey, I noticed that the same women attended each day I visited.
Each of them had their own exclusive “group” of fiiends and tended to sit at the same
table. I spoke with two difl’erent “groups” in order to obtain information and participants
for my study.

Participant observation and one-on-one interviews were my primary means of data
collection. The one-on-on interviews took place at the center in a location somewhat
away from the group to avoid distractions. Although privacy was attempted, because of
the commotion of the center, complete privacy was very hard to achieve.

Overall, I spent about 5 months visiting the women doing one-on-one interviews,
participant observation, but also spending time to get to know them. During the interview
sessions, either notes were taken or information was audiotaped or both.. Additionally,

daily participant observation notes were taken.

 

 

27

Interview Guidelines and Pos_sible Interview Oues_tigr_s

The questions asked were of an open ended format so that a conversation can take
place between informant and researcher. The questions fell into four categories: (1.)
General knowledge about hospice, (2.) Use of curanderos or folk medicine, (3.) Religious
beliefs, fatalism and the Western idea of “health replacing salvation”(Good, 1994) or what
is referred to the soteriological, and (4.) Fanrilismo which incorporates the idea of “taking
care of our own. A sample interview agenda can be found in Appendix A.

A fact sheet about hospice was provided to the informants and translated into
Spanish for ease of reading by those who were more comfortable with Spanish. A
Consent Form was also provided and offered to the women in both Spanish and English.
When questions arose about translating hospice, Hospicio was the term advised for use.
This is what translators and Spanish speakers believed would provide the best translation
of Hospice for the Spanish speaking population. As a researcher, I anticipated some
dificulties with language; but through the use of an interpreter, I attempted to override
dimculties and maximize exposure to informants.

Field Work Hurdles

My field work efforts included a number of hurdles that impacted many aspects of
my study. I am hoping that this personal reflection on field work gives a model of some
possible hurdles to be expected when doing fieldwork with an ethnic sample and some
possible solutions.

As I began this study, I was determined to do field work which included
interviewing human subjects. I have come to find that field work is not such an easy task.

At times, I felt as though I was making no progress and thought about giving up and just

28

doing a literature review. However, my belief in personal narratives and the importance of
the other’s voice drove my thesis idea forward.

Initially, I started my field work trying to contact community leaders in hopes of
finding people who would be interesting informants for my study. I left the desk and
books and headed out into the field. My initial high hopes became more and more
deflated by the lack of responsiveness of community leaders to the point that I felt
hopeless. What was I doing wrong? Why was I unable to convince others of the
intentions of my study?

It was not until I spoke with a representative from the Julian Samora Research
Institute (JSRI), Michigan State University-East Lansing, Michigan, that I became
enlightened on the importance of researching different cultures. Although I had thought
that I had an understanding of the people I intended to study, I felt as Wittgenstein (as
quoted by Geertz) said, “We do not understand the people. We cannot find our feet with
them” (Geertz, 1973). I needed to communicate with them in a way which encompassed
much more than talk in order that I could “find my feet with them”. I needed to establish
a relationship which treats the other as a partner in the conversation.

As Refugio Rochin, the director of the Julian Samora Research Institute (J SR1),
pointed out not only do I need to present my ideas, but I need to present myself. The
importance lies not only I knowing the people or the “other” but also knowing oneself.
Social science must accept responsibility for its observations as acts of witness that
commit the scientist as a person (Murphy, 1987). This all can be achieved by interacting
in constant conversation. Some important helpfiil tips for doing research with Mexican

Americans are as follows: (1.) To let them know a little about my background, (2.)

 

 

29

Explain to them my intentions of the research, (3 .) Let them know how my research may
help them, (4.) Let them know how important they are for my study, and (5.) Do not
assume anything just because they are considered Mexican American. These suggestions
may seem to be common sense to some; however, they may have been so common sense
that I had been overlooking them in my initial presentation of myself to potential
informants.

This advice lead me to do some research on the methodology of doing
ethnographic research with Mexican Americans. The literature suggested the importance
for the researcher to understand allocentrisnr, power distance, interpersonal relationships
and simpatica (Marvin, Gerado, Marin and Barkind, 1991). Because of allocentrism, the
literature goes on to say that interpersonal relationships within Mexican American groups
are nurturing, loving, and intimate. Therefore, the importance of designing a research
project which makes explicit the need for friendly interactions between researchers and
informants and methods which enhance friendly contact is essential.

Another characteristic of research with Mexican Americans one needs to take into
consideration is power distance. Power distance suggests that what is called “respecto” is
something that also must be taken into consideration if one intends to do a research
project with Mexican American people. Respecto connotes the need for respect of the
social power of the participants. Also related with power distance is the suggestion of
sitting close with the participants in order to become in a sense intimate and personal.
Simpatia also should be taken into consideration if one wants to do good ethnographic
research in the Mexican American community. Simpatia emphasizes the need for

behaviors promoting smooth and pleasant relationships. The goal is to achieve harmony in

30

interpersonal relationships. As a script, simpatia moves the individual to show a certain
level of conformity and empathy for the feelings of other people (Marin and Marin, 1991).
It is suggested that if cofi’ee or snacks are ofl’ered in order to express proper simpatia one
should accept. Also what is known as la platica or small talk before and after will help to
strengthen the feeling of sirnpatia.

These suggestions from both the literature and the community leaders like the
Director of Julian Samora Research Institute (JRSI) gave the researcher insight into the
importance of the presentation of self as the researcher. The newly acquired insight
gained fi'om my research helped “get my foot in the door” and openly talk with people in
the Mexican American community. I strongly believe that the information on how to
conduct interviews for narrative studies can also help the Western medical health care
providers and hospice care providers realize the importance of social interaction and
actions.

My second day at Christo Rey Community Center confirmed the benefits of
getting to know how to socially interact with an ethnic population. Consequently, I found
that before I began discussing my research it was essential to engage in la platica. Some
people required more than others. I spent this whole day almost engaging in la platica in
order to let the people of the community know that I was interested in their stories. I
talked with those who were fluent in English and found out those who were not. Other
people from the center volunteered to help me with the language barrier which I found to
be beneficial.

Facing my field work hurdles enabled me to gain insight into the importance of

presentation of the self. One cannot assume that the traditional curanderos, familismo, or

31

fatalism are the reasons behind the underutilization of hospice service without hearing
narratives from the Mexican American people. One must learn how to interact socially in
order to comfortably converse with the Mexican American people in order that their voice

can be heard.

Description of the Five Primagy Participants: “The Teachers”

 

Maria is 70 years of age. She is happily manied and has been for over 50 years.
She was born in Mexico but has lived in America for 60 years. As a young person, she
came to Lansing at the age of 22 and has lived here ever since. Her predominant language
is Spanish, but she can understand and speak some English. I would characterize Maria as
a very giving and sensitive woman. Her sweet and kind manner is reflected in her bright
and cheery smile. Although others spoke of Maria’s hard life, a humble Maria never
complained. Maria is a very spiritual person she uses her strong religious beliefs to pray
for herselfas well as everyone around her. She stated several times that religion “keeps my
spirit alive”.

Christina is 87 years of age. She is a widow of many years. Her birthplace is
Mexico, but has lived in America for 50 years. She Speaks fluent Spanish and English. In
order to survive, ”I had to learn to language,” stated Christina. Christina’s wisdom is a
quality that everyone at the center admired. Her soft white hair and little girlish smile,
although precious and delicate, commanded attention from everyone whenever she spoke.
She is a plump little women whose grandmother like stature encourages everyone who
knows her to take part in a hug. Some of the women even call her Mom. Christina is not
shy about speaking her mind. However, she is also content just listening to the people

around her converse. This was confirmed by her statement, “I have ears like deer in order

 

 

32

to listen to everything that is going on.” Her warmth is easily absorbed and her life
experiences are inspiring to hear.

Olejio is 61 years of age. She was born in Texas, but lived in Mexico for 5 years
before conring to stay in America. She lives with her two sons. She speaks Spanish
occasionally, but generally speaks English. One of the youngest of the group, Olejio is
more Americanized then most of the other older women. She understands that she is
living in the American society; however, she tries very hard to keep her Mexican heritage.
Her voice is soft and the expression on her face somberly expresses permanent
sadness.Conversly, she loves to talk and shows considerable facial articulation when
telling a story. By talking with Olejio, one can tell that she is very intelligent and has a
wide range of opinions.

Margaret is 78 years of age. She was born in Mexico and is a widow of about ten
years. She lives alone in an apartment next to Christina. Her main language is Spanish,
but she can speak some English. I used an interpreter to help in our interview. By the
tough look of her skin and the deep lines on her face, one can tell that she has lived a long
and hard life. When addressing my questions, her eyes never left mine. She was very
intense, but always in the end had to bring about a bit of humor into the conversation. She
cherishes her fiiendship with Christina and always sits by her at lunch.

Anna is 47 years of age. She was born in Mexico, but came to America when she
was about two years of age. Her job at the community center is to help out in the kitchen.
She is a short statured women with strikingly beautiful eyes and a stunning smile. Anna
told a story much different from the others. Her husband recently died of cancer and used

hospice in his final days of life. She was very emotional in telling her story. To talk about

33

it brought her much pain. I am very gratefiil that she was able to be so intimate.

These women were my teachers. I could not have done my study without their
insightful stories and wisdom. I realize; however, that there is always a concern regarding
human subjects. The concern is if they are telling the truth or simply obliging the person
conducting the interview. Personally, I found that after a relationship was established, the
women were much more open to my questions and gained a trust in me. Consequently,

trust begets honesty and I believe that the women spoke with much sincerity.

 

 

Chapter Three

Research Findings

In this chapter findings made in respect to the women’s narratives on death and
dying are reported. A variety of cultural factors could have been discussed; however, only
three of the most prominently mentioned in the literature which I have reviewed will be
examined. The prominent rationale for not utilizing hospice according to the literature is
the alternative use of curanderos or folk medical beliefs, familismo or what is referred to
as “taking care of our own”, and fatalism or the religious belief that there is little an
individual can do to alter fate. Let us now consider these three factors in greater detail.
Folk Medical Beliefs (Qurgrderos)

Folk medical beliefs among Hispanics were considered one of the most important
variables leading to the underutilization of health services (Tajalli, 1984). However, there
is controversy surrounding the use of folk healers and the extent of which Mexican
Americans actually use them (Marin and Marin, 1980). Yet, even with this reported
question of the use of curanderos, folk medicine is still used as a common way of
explaining underutilization of health services by hospice literature. According to a recent
article fi'om the hospice literature, it is common even in the US. for Mexican Americans
to seek out curanderos rather than physicians (Beechem, 1995). In another hospice

article, it is quoted from Falicov (1982) that while nearly all Mexican Americans are

34

35

Roman Catholic, “sorcery, Witchcraft and ancient herbal lore exist along with Western
medical practices and beliefs.”

Historically, folk medicine came about from folk medical lore of medieval Spain
which was then refined in Mexico. Folk medicine in general is based on health as a matter
of chance; Magic and bewitchment may cause many illnesses (Weaver, 1976). The
general practitioner of Mexican folk healing is called the curandero. The curandero is a
spiritual leader with healing powers. Cuaranderismo stresses the significance of
interpersonal relationships and the curandero is perceived by patients as more than a
practitioner. According to Clark (1970), people know that the curandero is one of them
and that she\he really cares what happens to them. It is believed that he\she sincerely has
their welfare at heart.

The faith healer is referred to in most of the literature as a main source of care for
Mexican Americans (Beechham, 1995; Fallicov, 1982; Crowley, 1993). Even though the
tradition of curanderos may still be strong in Mexico, it is not as frequently used, or even
heard of by Mexicans Americans. A recognition that these forms of healers exists is
important, but to what extent each Mexican American elder group and their families utilize
them is not known. (Talamantes, Lawler, and Espino, 1995)

The hospice literature has attributed the underutilization of hospice by Mexican
Americans to the use of curanderos (Beecham, 1995; Crowley, 1993). However, I found
that by speaking to the Mexican American women that the use of curanderos is a belief of
the past. Curanderos are no longer widely used. The assumption that Mexican

American’s believe in curanderos is an over generalization of their population.

36

“Most people do not even know what they are. I have seen some bad examples on
TV. There are not many around here and if there are they are just out to take your
money. They promise you good health for $50 or so but they are really just after
your money. The only one with the power to heal is the Lord. He can give
doctors the power to heal and medicine the power to heal but he is the one with
the power. No curandero can compare to that.”(Maria)

Fatalism and Religious Beliefs

Fatalism is the second category which I discussed with the women. Fatalism refers
to the belief that there is little an individual can do to alter fate. The idea of fatalism
parallels a strong faith in God. In other words, it is God who controls fate. In an article
from the hospice literature, former Surgeon General of the U. S. Public Health Services,
Antonia C. Novello, M.D.is quoted saying “Hispanics are fatalistic. We’ve been taught
that you live, you suffer, you die. That’s the way life is.” The idea has never been
presented that if you go to the doctor early, you won’t have to suffer pain or
discomfort.(Crowley, 1993) How strongly do the Mexican Americans in Lansing,
Michigan believe in the idea of fatalism? In order to test this question for its legitimacy,
narratives of Mexican Americans elderly women in Lansing, Michigan were used. The
conclusion is that the Mexican American women with whom I spoke had very strong
religious feelings. Fatalism and the idea that God controls fate was a belief shared by the
majority of the women with whom I spoke. The women spoke with much emotion on the
topic. For example, the informant whom I have named Olejio burst out into tears when
she began discussing prayer and her spiritual belief in God.

Also, as an addendum to fatalism there exists in the Western medical system a

phenomenon referred to by Good (1994) as the “soteriological”. Soteriological is defined

37

as the idea of sufl’ering and salvation. In reference to the Western medical model, it is the
needed reflection in medicine which shows that in our “post-modem times, “health
replaces salvation” (Good, 1994) Soteriological is a belief which opposes the idea of
fatalism. The fatalistic belief is that God controls life and death. Life is eternal and one
must die to reach everlasting salvation. The soteriological on the other hand is a concept
of Western medicine and of Western society which states that health is what is important.
One should not die if one can live by the help of modern medicine. These two ideas are
somewhat conflicting. The soteriological looks at death as a correctable deficiency
(Callahan, 1993). Fatalism looks at death fiom the perspective that life cannot be life
without death being integral to it.

“We have life and life and death and death. In death we are going to die, but we

are going to live after. Jesus says we have to die, but we will have life

after.”(Maria)
The popular Mexican American religious belief accepts death as natural; as a must. The
soteriological looks at death as a possible, but avoidable event in the eyes of modern
medicine. The modern medical belief is that life can be prolonged. It fits within the
Western culture’s strong support of technological medicine and the idea to ease sufi‘ering
at all cost by the medical system. The hospice philosophy shares a common goal. This
hospice goal is to humanize care for the dying and their families and to introduce new
forms of medical technology to ease the pain of death.(Siebold, 1992) Mexican
Americans fatalistic views do not fit with the soteriological and; therefore, do not fit with

the hospice philosophy. There is no need to ease suffering artificially for as one lady said:

38

“God would not let me sufi’er.”(Margaret)

The belief that God would not let someone sufi‘er makes the hospice philosophy hard to
grasp for the Mexican American women. In other words, their fatalistic views represent
the belief that God controls everything. There is no reason to find another way to deal
with death and sufi‘ering because only God controls how and why you die.

“I have suffered just by living life. Sufl‘ering in death is not different. Just as I

pray to help case my day-to-day suffering’ I would pray for my suffering in

death. The bible says that you have life until you are 70. After that you have free
life. IfI die now I am ready, because I have already lived life. I am just enjoying
my free time. There will be no need for me to fight for life now. When it is my
time, I will go.” (Christina)
In the women’s mind there is no need for an organization such as hospice, because God
would not give them sufl‘ering that one could not handle. There is no need to fight for life.
When God calls you, it is your time.

I found that, when talking about religion, the women had much to share. Their
religion helped them through every facet of their day-to-day lives. Also, in times of
illness, God was given as the main source of support. They do not see dying as a problem
or sufl'ering as something which needs to be alleviated. Whereas, the soteriological view
of Western medicine and hospice sees suffering as a problem; something which needs to
be eased. According to the Mexican American women; God takes care of these things.

However, the Mexican American women do not disregard the medical system all
together. For example, they did say that when they get extremely ill they will go to the

hospital and seek help. They went on to say that it is God who gives physicians and

medicines the power to heal.

 

 

39

“Everything comes contaminated, but your body cures it automatically. With

medicine and prayers one can get better. Medicine comes from the help of God.

Ifthe doctor says that they cannot do anything, then the person wants to die.

Prayer is what is most important. Without God, we cannot do anything. Without

God, we would not be living.” (In tears) (Maria)
The hospice philosophy stresses the importance of comforting the patient and the family
facing the end of life. The Mexican American women find no need for extra help in
comforting. They have learned from the help of the Bible and God. They take comfort in
God. There is no need for something like hospice. In their minds, the idea of hospice is
neither good nor bad. To them the hospice philosophy is a concept which is not desired
by their culture. Religion keeps them strong.

The hospice philosophy portrays the idea that death and pain are conditions which

need to be alleviated. However, the Mexican American women do not share this outlook

of the problem. As one women said:
“Pain is in the heart, not something a pill can take away.” (Maria)

Therefore, a conflicting definition of the meaning of pain and suffering between the
hospice philosophy and the Mexican American women’s narratives is seen. There are no
discrepancies to be eased, or problem to be solved when it comes to pain, suffering and
death according to the Mexican American women. The Mexican American women do not
need to find an outside way to deal with death. It is something that only with the help of
God can be eased.

An interesting finding of my study showed that although the women talk very

strongly of their religious beliefs and their apathetic feelings toward hospice. Ifthere was a

40

dire need of help taking care of a dying family member, maybe hospice could be used.
“My sister in law needs help taking care of her mother. She just cannot do it on
her own. I think that hospice may be helpful for her.” (Margaret)

However, the majority of the women did not share this acceptance of hospice and were

honest in saying that they did not see a “need” for hospice.

Overall, the women’s religious beliefs were what kept them going. Religion gave
them the support and strength to be not afraid of death. They believe that God would not
promise eternal life if he didn’t mean it.

“In death we are going to die, but we are going to live after. She knows that Jesus
and God say that we have to die, but we have hope that we will have life after. A
life after death. God has conditions. You have to do what he wants if you are to
have eternal life. I do not fear death. I used to go to the hospital and tremble.
Now, because of my faith in God, I don’t.”(Maria)
The belief that these women have in God is very strong. God is like a medicine that they
use to help cure them of their illness and fiee them from contamination from the world.

“Every morning I wake up and use the bible. I place it on my eyes and ask for
healthy eyes, then I place it on my ears and ask for good hearing and then I place it

9‘) 3’

on my ears and ask for good hearing, then I place it on my “box .

She explained her “box” to be her upper body cavity which holds her heart and
arteries. She asks God to clear her arteries of any blockage so that everything will flow
correctly. With a laugh she says,

“Then I ask for a stomach like I had when I was twenty. I use the bible all the way

down to my feet. I also place the bible over my bed so that I don’t have a

contaminated bed. There are bad things in the air and I want to be protected
fi'om them.”(Christina)

41

These narratives about religion and fatalism present the Mexican American women’s
perspectives on death and dying. They show the conflicting definitions of death and
suffering between hospice and their own religious beliefs. Both the Mexican American
women and the hospice philosophy believe in the universal goal of a “good” death, but it
seems that their definitions of “good” are conflicting. ’

Familismo

One of the most important culture-specific value of Mexican Americans is the family
(Moore, 1970). Farnilism (also called familismo) is a cultural value that involves
individuals’ strong identification with and attachment to their nuclear families and strong
feelings of loyalty, reciprocity and solidarity among members of the same family (Triandis,
1982). The concept of familismo incorporates the ideology of “taking care of our own”.
However, the practice of familismo may not be as strong as once thought. The family
networks among the aged no longer constitute the “romanticized” extended family so
often described in the ethnic literature (Beecham, 1995; Clark, 1959; Crowley, 1993;
Kalish, 1976; Saunders, 1954; Talamentes, Lawler, Espino, 1995).

Historically, the family provided all levels of support for the aged. Yet, in today’s
society, Mexican American families, like many families, are experiencing various forms of
structural change as they attempt to adjust to an advanced technological society (Williams,
1990). The traditional extended families are breaking up and the elders are becoming
more independent. Independence is now a large part of the Mexican American elderly
culture. The close knit family is breaking up and the children are forced to move away for

economic reasons. Therefore, the elders worry who is going to take care of them if they

42

fall ill. Considerable anxiety is felt in relation to their care from both the elders themselves
as well as the children. Naturally, the children feel a strong filial responsibility to take care
of their parents; however, financially it could create a risk that may become detrimental to

the caregivers family.

There now exists a struggle between obligation and financial survival. There is no
indication that the familial network structure provides definite assistance for terminally ill
elders. Therefore, I hypothesize that the underutilization of hospice should not be strictly
linked to the ideology of familismo. The literature, which eludes to familismo and “taking
care of our own” as the main ideology of the Mexican American culture, needs to hear the
voices of the people in order to understand the modern struggle of living within today’s
technological society. As the Mexican Americans become more acculturated into the
Anglo American society, the idea of the family seems to change; and with it a new way of
life is being established. Customs, traditions, and beliefs are now fluid entities which can
only be known by speaking with the people of the community.

The hospice literature places much emphasis on the idea of the Mexican American
family (Beecham, 1995; Crowley, 1993; Talamentes, Lawler, Espino, 1995).
Consequently, family unity is suggested as one of the main reasons why Mexican
Americans do not use hospice. Other studies agree that family relationships among the
elderly are significant; however, they tend to disagree about the extent of family support of
Latino elderly (Sanchez, 1995). Recent literature on the Mexican American family;
however, criticizes the perpetuation of the stereotype that the family unit is cohesive,
strong, and capable of fending off all external threats to individuals (Sanchez, 1995).

Mobility and acculturation have separated the Latino family from the elderly.

43

Subsequently, the elderly frequently end up living isolated lives in urban barrios.
(Sanchez, 1995).

I found by talking with the women at Christo Rey that the family is still an
important element. Nevertheless, they are aware of the changing society in which they
and their family live. For example, the younger generation is becoming more mobile and

often moving far away. One women talks about how spread out her family is now:

“My family is all over; one in Illinois, two in Texas and one in Florida. All over.
They call and write, but seldom visit. Here, my daughter takes care of me. Most
of us live in nursing homes. It is OK. to live alone because we know that there is
someone nearby to help us. I do fine living by myself.”(Olejio)

Although the nuclear family is moving apart, the women still rely on them for
transportation and care. In times of illness, the women still say that they rely on their

family to take care of them.

“I wouldn’t need something like hospice because I live with my son and he takes
care of me. We are proud of our culture and we do not need anyone to help us
take care of our family. America tries hard to take away our culture, but there are
some good things that need to be kept like our close family. We may not be as
close, but we still call and talk. Even in death, our family is there. What more do
you need! If one feels betrayed by their family in times of need, then they are
already dead.”(Margaret)

Anna interestingly says:

“When I am on my death bed, I do not want my family to see me suffer. I saw my
husband die. It was very painful. I do not want my kids to go through that
pain.”(Anna)

44

There are conflicting views about the family caregiving role. On one hand, the family is
valued and significant, yet; the reality of the Mexican American family is that it is not as
close as people would like it to be. Elderly are living alone and other institutions are
assuming greater roles (Beckett, Dungee, and Anderson, 1991; Becerra and Shaw, 1976;
Torres-Gil, 1978). The elderly women confess that they are comfortable living alone, but
still rely on others for help. These helpers are not only family but neighbors.

“Ifthere is an emergency, there is a cord I pull and it summons the medical people.
The apartment complex helps take care of me. I know that when my time comes, I
will be able to let everyone know. Just pull the string and help will arrive.” (Christina)
These narratives show that the nuclear family traditionally associated with Mexican
Americans is changing.

How does this impact hospice use? Although the family is changing, the talk is still
of “taking care of our own”. The realization of this changing tradition is recognized by
the Mexican Americans, but seldom comfortably acknowledged. The Mexican Americans
I spoke with are struggling to hold on to their traditional beliefs of close family unity. To
them, hospice represents a threat which places their feeling of tradition in jeopardy.

“When one comes to America, one has to change their ways to fit into a new

culture. But the good parts of our traditions are still important. For example, the

family is still an important element of our culture. Hospice came to our church. I

would not want something like that because it would interfere with the

family. It pushes the family out. We take care of our own. It is our obligation to
take care of our family ourselves” (Margaret).
Margaret gave me an example of how some Mexican Americans are giving in to the

American culture and losing their family unity. While she tells the story, the tears and

45

anger can be seen on her face.

“My sister- in-law’s mother became very ill. The doctors said that she was going

to die. The family was very sad and prayed very hard for her. She somewhat

recovered, but still needed medical help. The daughter decided to put her in a

nursing home. (tears) How could you do such a thing the other family members

complained? It was a disgrace to the other family members to see that Mother was

being put in a nursing home.”(Margaret)
Here once again, the conflict arises over the struggle between the traditional obligation of
taking care of their own and the reality of medical help in times of need. The women all
talked of close families and fiiends, but they also admitted needing outside help from
doctors when they are ill. However, in talking to relatively healthy elderly the major
theme is that they want to share with me the traditional ways of the Mexican American
family and not the idea of the changing Mexican American family role in today’s American
society. According to the Mexican American women with whom I spoke, there is no need
for a service such as hospice because the family, in spite of difficulties, is perceived as
significant.

However, according to Sanchez, (1995) there definitely appears to be a conflict
with expectations and the perceived ability of the family structure to meet these needs
(Sanchez, 1995). Therefore, it is not peculiar that the women did not speak much about
the negative aspects of the changing role of the family. They were not eager to admit to

the idea of a change in family unity. Because often a conflict exists between what is known

and what is admitted.

Chapter Four

Discussion

cm

This study examined the question of why Mexican American elderly women in
Lansing, Michigan do not use hospice by using an interpretive approach. Thus far,
narratives including the use of thick description, have been presented. The narrative and
thick description categories of the proposed interpretive approach brought into existence
the Mexican American women’s true feelings about death and dying.

As a portion of the title of this study, “En Sus Proprias Palabras suggests, the
women’s personal narratives were presented in “their own words”. The narratives were
taken in the context fi'om which they were given; the Mexican American community in
Lansing, Michigan. Every word, gesture, and symbol in the tradition of Geertz’s thick
description was taken as apart of their culture. The narratives gave confessions about the
Mexican American women’s lives which helped me “find my feet with them.” (Geertz,
1973)

From the “said” discourse, I was able to explore the assumed generalizations about
Mexican Americans “barriers” to hospice which is discussed in the literature. Some of the

findings supported the literature; for example, the idea of fatalism and

46

47

familismo. In favor of this support, the Mexican American women spoke, not only in
words, but also in gestures and emotions, regarding the importance of their family and
religious life. Therefore, the narratives revealed that the hospice literature does have some
merit in pointing towards the concept that family and religion are important to the
Mexican American culture.

However, the hospice literature reviewed did not look at the changes in the
Mexican American traditions brought about by assimilation into mainstream Western
society. This included the aspects of the breaking up of the Mexican American close knit

family unit because of industrialization and the changing values of industrialized Western

 

society. Also, other assumptions in the literature, including the Mexican American’s use
of curanderos as a reason for the underutilization of hospice, were proven false in this
particular population. Although some women expressed using herbal medicine, essentially
curanderos are a thing of the past.

“Barriers”

The hospice literature makes evident the cultural differences of Mexican
Americans and refer to these cultural differences as the best explanation of the
underutilization of hospice. These cultural differences are referred to as “barriers” to
hospice care (McDonald, unknown; NHO, 1994). Conversely, I argue that there are no
“barriers”. A “barrier” is “a boundary or limit something that separates or holds apart;
something immaterial that obstructs or impedes” (The American Heritage College
Dictionary, 1993). Therefore, I interpret “barriers” as being a physical road block which
obstructs one from doing something they want to do. It is not apparent that a “banier” to

hospice exists according to the women of the Mexican American community with whom I

48

spoke. Nothing is stopping them from using the service. The dilemma is that the Mexican
Americans do not feel that there is the need for this kind of help.

Narratives were provided as examples relaying the message that the Mexican
American women are not seeking out the use of hospice services. On the other hand, they
told about the Mexican American women’s struggle to understand the hospice’s
philosophy of death and dying and examining if the philosophy fits within the context of
their cultural understanding of death and dying. The narratives gave truthful evidence
fi'om the words of the informants about their feelings on hospice and its service. The

narratives also helped to confirm or reject certain hospice literature claims.

 

Although some may not find narrative examples useful, most anthropologists believe that
it is small scale and qualitative types of information that have become the hall mark of the
science, more than compensated for the missing statistical larger focus that other social
sciences use (Barrett, 1991).

By using narrative and thick description, I was able to “cut the culture concept
down to size” (Geertz, 1973) The cultural concept given by the literature tried to give a
“most complex whole” approach to the Mexican American culture. The women’s daily
rituals, and commentary helped to cut the assumed complex whole idea down to size;
therefore, “insuring its continued importance rather than undennining it”. (Geertz, 1973).
The Mexican American narratives I obtained supplied meanings from the Mexican
American women’s own perspective setting forth their understanding of hospice and death
and dying.

Moreover, interpreting with “thick description”, or the “said “ of social discourse,

I have come to the conclusion; that hospice is a concept which is not part of the Mexican

49

American women’s “said” social discourse. In other words, hospice does not yet have
meaning for the Mexican American elderly women. The narratives of the elderly women
presented a struggle of the Mexican American women to understand the concept of
hospice. Until that concept is understood, it is hard to report if hospice is needed by
Mexican Americans in the Lansing community. Consequently, it is hard to analyze
cultures “said” or narratives when a common meaning is not shared.

Wm

The assumption that Mexican American’s use of hospice is a “problem” or that
there are “barriers” can be refuted by using the theory of cultural relativism. Cultural
relativism gives ownership for meanings to the actors whose words and actions they
belong to. The women’s “thick descriptions” of death, dying, family care giving and
religion give, in their own words (en sus proprias palabras), beneficial narrative data.
The use of narratives from a cultural relativistic view provides insight for research into
exactly where the “problem” may lie. But is the underutilization of hospice by Mexican
Americans necessarily a problem?

By speaking with the Mexican American women I have found that there is no
“problem”. The underutilization of hospice by Mexican Americans is not a “problem”, but
an example of the need for understanding cultural relativism. The hospice literature tries
to define reasons why Mexican Americans are not using hospice, but soon forget that
hospice fits under the Western medical philosophy of comfort care. Comfort care and
spiritual help of the dying patient are concepts ethnocentrically believed to be beneficial
for the Mexican American culture. However, hospice was created out of a “way to meet a

need” (Siebold, 1992). The Mexican American women do not share the constructed

50

“need” for hospice. The humanistic approach to terminal care which focuses on pain
medication, such as morphine, attempts to ease the physical pain and suffering of dying,
whereas the Mexican American women are more interested in easing the spiritual pain and
suffering of death and dying. In other words, these Mexican American women have their
own framework which enables them to understand and accept death.

Ifthe hospice philosophy is examined in relation to the framework of the Mexican
American women in this study, it can be determined that a common definition of proper
death is not shared. To the Mexican Americans, the hospice philosophy is insignificant
and does not fit in their cultural fi'amework of death and dying. The Western culture that
accepts hospice, is part of a society which “ finds itself without a creedal or mythic
fiamework in which to understand life and interpret death”.( Wass, 1979) The hospice
philosophy struggles with the question of who has control over the process of dying - the
individual or medicine? Without struggling over the question of control, the Mexican
American women believe that it is the individual and the individual’s relationship with God
which will help them in the dying process. They do not see the need for a medically
enhanced method of dying.

However, when examining the differences of the hospice philosophy and the
Mexican American philosophy of death and dying it must be made apparent that a
healthcare culture is being compared with a ethnic culture. The hospice helathcare culture
is a culture which by being afiliated with modern medicine has a different lifespan
orientation leading to different beliefs on death and dying. Although, hospice claims to
accept death, it is still a healthcare culture which has been ingrained with the idea to

sustain life at all costs. The life span of hospice and the point when life surrenders to

51

death is different from the Mexican Americans concept of life and death. The lifespan
orientation of a healthcare culture compared to an ethnic culture has two different
perspectives. The Mexican American culture has a concept of the lifespan which
incorporates more than just birth, life, and death. The Mexican American women spoke of
a continuum in which there was life after death. Therefore, note the difference between the
cultures and realize that a healthcare culture is being compared to a ethnic culture in which
both have difl’erent orientations on the concept of a lifespan.

The underutilization of hospice is not necessarily a “problem” or the “barrier” to

which the literature refers. It cannot be taken as generalized assumptions of every group

 

of Mexican Americans. In order to argue such a position calls for the use of certain
aspects of cultural relativism. Cultural relativism is a general term which is sometimes
misunderstood in its intent. To clarify my position I am taking cultural relativism to be “a
philosophy which, in recognizing the values set up by every society to guide its own life,
lays stress on the dignity inherent in every body of custom, and on the need for tolerance
of conventions though they may differ from one’s own. Instead of underscoring
differences the relativistic point of view brings into relief the validity of every set of norms
for the people whose lives are guided by them, and the values they represent.”
(Herskovits, 1949) The cultural relativism argument appropriately denotes that the voice
of the Mexican American is heard in order to understand why Mexican Americans in
Lansing, Michigan are not using hospice.

The cultural relativism argument also challenges the hospice literature’s description
of cultural “barriers” to hospice care. Only by using cultural relativism can the we analyze

the Mexican American beliefs about death and dying. “The natives, they advise, should be

 

52

assisted to develop the potentialities of their own cultures and to lead lives of their own,
rather than to acquire our Western culture, which they cannot understand or appreciate
adequately” (Bidney,1953). In other words, the Mexican American women of Lansing,
Michigan who do not use hospice should not be viewed as being constricted by a
“barrier”, but realized for the development of “the potentialities of their own cultures”.
Until the women are able to incorporate the idea of hospice into their culture, and
understand and appreciate the purpose of hospice will they begin to request the services of
hospice.

Yet, when requests are denied and Mexican Americans wanting to use hospice are

 

finding themselves unable to utilize its services can the term “barriers” be used to describe
the situation. Until then, hospice caregivers need to relate to particular Mexican American
groups from a culturally relativistic framework. By using a thesis of cultural relativism
and narrative ethics, relationships are formed and Mexican American individuals cultural
beliefs are understood as well as educating both hospice caregivers and Mexican
Americans about the respective beliefs and purposes of each other’s cultures.

In presenting my argument for cultural relativism I propose that the Mexican
American culture needs to be viewed from its cultural context. In order for hospice
caregivers to understand the underutilization of hospice by this particular culture calls for
educating itself about the targeted culture. Becoming students of a particular culture, by
the use of narratives, the hospice caregivers can become educated about the beliefs of
death and dying from the perspective of the Mexican American teacher.

In this argument for cultural relativism I want to add a twist. Traditionally,

cultural relativism as a theory is used for cross-cultural studies. Yet, this particular study

 

53

looks at Mexican Americans and their acculturation into American society. Mexican
Americans represent a culture with its own beliefs and traditions trying to co-exist within
American society. Therefore, I believe that there are what I refer to as “generals” which
are shared between the Mexican Americans culture and hospice. “Generals” is a term
which is used to incorporate a shared ideal but one which can be defined differently by
difl’erent cultures. “Generals” is used in place of “universals”; for the use of “universals “
connotes a much more encompassing notion of shared ideals. In defining “generals”, I
must point out that there is a general term or ideal which is shared but which is defined
differently. “Generals”, on the other hand, are those least common denominators to be
extracted, inductively, from comprehension of the range of variation which all phenomena
of the natural or cultural world manifest. For instance, morality and aesthetic emotion are
criteria for truth as “generals”. “Every culture supplies its own different content to them
depending upon the specific historical development of such a culture.” (Herskovits, 1949).
However, a “general” such as death with dignity can exist. It is defined from the context
of each individual culture. Just as different languages define concepts differently with a
variety of phrases or words, a “good” death is defined differently by hospice and by the
particular group of Mexican Americans in Lansing, Michigan.

Because of the pluralistic society in which we live and the close interaction of
cultures, the idea of “generals” is able to exist. It is the general idea of a “good” death
which I believe has lead the hospice literature to look past the underlying question of why
Mexican Americans do not use hospice. It is the hospice’s intention to supply a service to
everyone which is believed to uphold a natural way of dying. However, by overlooking

cultural relativism the hospice literature does not discuss that there may be populations

54

who do not see the hospice service as a necessity for a “good” death. This is the focus by
which the hospice literature and the hospice caregivers are formulating their concern.
They believe that everyone should have the chance to die with dignity. Yet, as cultural
relativism indicates the hospice’s definition of a “good” death is not necessarily shared by
the Mexican American culture in Lansing, Michigan.

It is quite possible that the Mexican Americans already have an informal system of
hospice which provides their culture with a “good” death. Therefore, just as the narratives
of the elderly ladies showed, there exists a belief in the elderly Mexican American
population of Lansing, Michigan which refiites a “need” for hospice. In a close knit
community where family and neighbors are easily accessed, there is no need for outside
help.

Although the nuclear family is tending to grow apart, the women that I spoke with
still believe in the use of the family as a support system. Family members are seen to be
dependable and reliable. There is a sense of duty toward each other. They appear to be
willing to give, often with the idea that they themselves might be in the position of needing
family help in the future. High familial integration with the family network will lead
individuals to first seek help (curative measures) within the family except when illness is
very serious (Giachello, 1985). Mexican Americans are more prone to act on “need” for
health care; whereas, Americans tend to prescribe to the philosophy that when you feel the
slightest pain go to the doctor. “Medical needs are the strongest predictors of health
services utilization for the Mexican America population” (Giachello, 1985).

Mexican Americans also traditionally illustrate elderly women of the community as

caregivers more commonly known as 1a abuela. (Facio, 1996) The Chicana caregivers

55

provide the necessary care for ill family members. The Mexican American elderly women
have expectations in relation to their gender and age. Their nonacceptance of hospice may
be explained by their traditional obligatory role of caregiver, grandmother and spiritual
leader. Therefore, they see the need to be strong, religiously and physically, for the sake
of their people. Quite possibly it is this existence of an informal system similar to hospice
which the Mexican Americans feel is sufficient in dealing with illness, death and dying. If
the closely knit Mexican American community already has an informal hospice service set
up where no morphine or pain medication is used then hospice’s philosophy of comfort

care to relieve pain may not be needed. Once again to question becomes a question of

 

need. Do the Mexican Americans of this particular population “need” or desire hospice
care?

A “good” death as an end is a shared ideal however; what constitutes a “good”
death calls for the use of cultural relativism. Hospice must try to understand death and
dying fi'om the perspective of the Mexican American.

The general value of both cultures is that everyone should die with dignity.

“There are some moral rules that all societies will have in common, because those rules are
necessary for society to exist” (Rachels, 1986). Although a common general is shared, the
interpretation of the general concept of a humane death may have different meanings in
different cultures. “Cultures may differ in what they regard as legitimate exceptions to the
rules, but this disagreement exists against a background of agreement on the larger issues”
(Rachels, 1986).

Humane death is a shared moral universal by both hospice and the Mexican

American women. One might be inclined to believe that this common shared moral value

56

is good reason for the use of hospice by Mexican Americans. However, humane death or
death with dignity is defined differently by the two cultures. The definitions of humane
death, taken from the information gathered from the narratives of the women in the
Mexican American community in Lansing, Michigan, does not include the need to ease
pain by the use of medicine, the need for spiritual help, the need for a caregiver to help in
the death process, the need to support the family member as Well as the patient, or the
need to understand death and to be not afraid. The Mexican American women’s strong
religious beliefs and family ties establishes a working framework to deal with death and
dying. This framework does not include the need for a service like hospice.

Although in general there may be a shared philosophy of death with dignity,
pluralistically different cultures may define death with dignity differently. It is the
difference in what a humane death means in relation to the society that defines it which
helps to explain why Mexican Americans do not use hospice. As one women confessed:

“A “good” death to me would be to fall asleep peacefirlly.(Christina)

Christina also talked about what death means to her in a way which exemplifies the
different definitions of a humane “good” death.

“I do not need any medicine when I die. I want to die the way the Lord wants me to die.
When it is my time, it is my time. I will endure any pain which comes along with my
illness for it is the final step for my reaching eternal life. Dying is not such a bad suffering
for we have suffered our whole life. The strong person can handle the pain and suffering
for according to the Lord it is OK. to have pain. Pain makes me find peace in God; this
is why there is pain. It is not meant to be eased by medicines in the final days. For if your
time has come, then let God take over your body and do what he pleases.” (Christina)

However, overall the women shared with hospice a universal moral value; the need for a

humane “good” death.

57

“I do not want to die violently in crime or anything like that. I want to die a death which
God has chosen for me. I can be taken by illness or strife, but not by the hands of another
human that is not in God’s plan. Even cancer is natural for it is the wishes of God that
controls things like that.”(Maria)

The definition of cultural relativism is the view that no one culture is better than
another. “Anthropologists now agree that each culture must be examined in terms of its
own structure and values, instead of being rated by the standard of some other civilization.
This anthropological principle can lead, it is true, to relativistic or pluralistic philosophy- a
belief in many values rather than a single value system.” (Kroeber, 1950; Kroeber and
Kluckhohn, 1963; Keesing, 1958; Foster, 1962). Therefore, no one narrative scheme is
better than another. The hospice philosophy’s value of “good death” cannot be compared
within the Mexican American’s philosophy of “good death”. One can only make a
comparison between persons and cultures with respect to narratives if and only if a
common problem is shared. The information that I have gathered from the narratives
supports this point. The Mexican American women’s stories explain a different lifestyle
that cannot be interpreted in comparison to the idea of the “good” death which is
indoctrinated in the hospice philosophy.

The conclusion that I have reached in researching the question of the
underutilization of hospice by Mexican Americans is that there is no absolute answer to
this question. The best answer one can get is to talk to the people and report by “thick
description” the narratives in order to understanding their meanings of family caregiving,
death, dying and religion from their own cultural perception. Therefore, if and only if, a

common problem is shared, can a common solution be found. Hospice for these Mexican

 

58

Americans does not fit into their definition of “good” or even “needed”.

“As a total way of life ours may not be preferable to others, and we need not try to
turn them into copies of Western civilization.” (Hatch, 1983) How can we compare one
culture to another from only one culture’s viewpoint? This is why I am arguing that the
only way we can objectively look at the problem of the underutilization of hospice is by
documenting the narratives of the people being studied. Therefore, with thick description
the “said” of social discourse and the meanings of a culture can be known.

Documentation or as Geertz says “inscription” is the key to understanding another

culture’s point of view. Comparing the Mexican American women’s view with the

 

hospice philosophy is not possible because a common problem is not shared.

A narrative view better enables hospice researcher the ability to study a culture
difl’erent from the Western American culture. The “narrative view” says that there can be
no comparison between cultures. There are only narrative schemes explained from a
particular person in a particular culture. One might wonder how and why the question of
Mexican Americans and the underutilization of hospice should be addressed in a way
which can be beneficial? The significance lies in the realization that there are culturally
specific narratives which define the problem of death and dying differently.

Take for example “John” a born and raised in western America has been diagnosed
with cancer. John is very afraid of dying. He feels like he is not ready to go. He always
thought that he would just die in his sleep with no pain. The pain of cancer has been great
for him. Emotional pain as well as physical pain. Hospice is offered to him as a way to
help him in his last dying days. He accepts hospice. He doesn’t want to go through any

pain and wants the health caregivers to help his family take care of him. He does not want

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to burden them with his care. For him, hospice is providing a “good” death. In
comparison, Maria a women from the Mexican American community is also diagnosed
with cancer and has been given that prognosis of less than six months to live. She believes
that it must be her time and prays for eternal life. The cancer can be overcome by prayer,
and, if it cannot, it is just pain which can be overcome. For example, one women said
when asked about pain:
“it (pain) is just something happens in life -’halgo de dios’. When one is born, you cry for
they must face a world of suffering; however, there is no need to cry when one dies for
they are leaving the suffering behind in order to enter a world where there will be no
suffering.”(Maria)
Overall, the elderly Mexican Americans women with whom I spoke were not afraid of
death. “In the final hours of death, you have God and your family. They can cure any
pain of the inside, which is the worst pain. Pain is everything. Spiritual pain, emotional
pain like one is losing oneself and there is also physical pain” Therefore, the “good” death
using the narratives of the Mexican American ladies tell a story which defines the “good”
death in a different way form the hospice philosophy. One cannot compare the feelings
about hospice from the Western view and the Mexican American view. There is a shared
“general” goal of attaining a “good” death, but a common shared definition of a good
death does not exist. Consequently, there is no shared concept of the problem. Therefore
a shared common solution cannot be made.

Hospice is a philosophy that fits into the western idea of a “good” death quite
nicely, but trying to impose this idea onto another culture in not an easy task. It will take

time for the Mexican American culture to adopt their definition of hospice and what it

 

60

means to them. Socially, hospice is a new word that needs to be defined by their culture
before it can be used. Once it is defined as an essential need by the Mexican American

culture, then it may possible be considered as a beneficial service.

Chapter Four

Conclusion

General Implications

In this study, I investigated the question of why Mexican American elderly women
in Lansing, Michigan do not use hospice. I applied an interpretative approach including
the use of narratives from elderly women in the Mexican American community in Lansing,
Michigan, the use of thick description as a descriptive tool for analyzing the narratives, as
well as an argument which calls for the thesis question to be examined from a cultural
relativistic fi'amework. By utilizing these methods, I speculated reasons as to why
Mexican Americans do not use hospice services as described in the hospice literature. The
results interpreted from the narratives of the elderly women revealed that the use of
curanderos is no longer an issue; however, fanrilismo and fatalism are still held in high
regard.

Subsequently, the question asked: How do these assumed cultural factors relate to
the use of hospice? Here an argument for the use of cultural relativism was discussed.
The resulting conclusion is that although Mexican American cultural factors may be
difl‘erent from the mainstream Anglo American culture, there are strong values of family

and fatalistic beliefs that do not necessarily set up “barriers” to hospice. Where the

61

 

62

literature refers to these cultural traits as “barriers”, the authors have set forth a
paternalistic view that hospice should be utilized by everyone.

Everyone should die a “good” death. However, this argument does not take into
consideration that the Mexican Americans may define a “good” death differently and see
no need for the assistance of hospice services. By understanding the Mexican American’s
cultural beliefs of death and dying from the context of their oWn culture, hospice may be
able more clearly understand the needs of the Mexican American people. Hospice needs
to listen to the Mexican Americas people and allow them to become teachers. Hospice
caregivers may learn that there are different ways of dealing with death and dying which
are also after the same end; a humane and dignified death.

Overall, there is a need to recognizing plurality of culture. One needs to view each
culture as having various beliefs defined from the content of their own culture. Cultural
relativism is not a static concept. As one may, realize Mexican Americans come from a
Mexican heritage and may have traditions and beliefs instilled in them to varying degrees.
By living in America, American ideals are now also becoming part of their heritage. The
Mexican American culture will always be changing as new generations are born and
mature. Although the heritage will tried to be preserved, the pluralistic society in which
we live will force acculturation.

The argument which I have made about the nonexistent “need” for hospice may
only be a generational set of beliefs. Given time and the proper education about hospice,
Mexican Americans may also come to share the “need” for hospice services and appreciate
their purpose. For example, in an interview with Anna she told me about her positive

experience with hospice. Her husband died of cancer, but used hospice in his final days of

life.

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“It was a positive experience. I would not have done it any other way. At first I
did not know that he had choose to use hospice. I thought he would try treatment,
but he did not want life support because that is prolonging death in a way which is
unnatural.

It was very painful for me to see him suffer. I needed help because of my
emotions. I was not able to be as strong as I would have liked. I could not ask for
friends’ or neighbors’ help because he did not want anyone to know of his illness.

Our relatives did not believe that there is such thing as a cancer that can kill
someone like that. I don’t think they believed that he was sick enough to die.
They never even came to visit. To him, death was something he did not think
anyone should see. I prayed all the time and hoped for a miracle, but believed that
God wanted it that way. It is like he has new life now. He is Gods child. God
was anxiously awaiting his arrival in heaven. Now, he is living his new life in
heaven.”(Anna)

I then asked Anna if she would use hospice in the same situation.

“I had a very positive experience with hospice. As I said before, I could not have
gotten though the pain without the help of hospice. But I would not want my
children to have to see me die. It would be to painful for them”.(Anna)

Anna’s narrative showed that a certain amount of traditional cultural beliefs still exist like

the belief in fatalism and obligation to her husband. Because of her age and her

assimilation into American society, Anna accepts help and does not see hospice as an

infiingement on her heritage. Anna’s story is a prime example of how the “need” for

hospice may change with the generations. Therefore, in my previous argument I discussed

that one cannot talk of “barriers” because there is no shared definition of the “need” for

hospice. As hospice begins to interact with the Mexican American culture and the

Mexican Americans begin to learn about hospice, the plurality of culture may allow them

64

to become knowledgeable about each other.

In summation, I believe that possible shortcomings of this research should be
understood. It is very possible that the women that I interviewed were not as honest as I
would have hoped. Some women may have wanted to give the impression of having a
stronger beliefs that they actually had. What one says and what one does are two different
issues. However, if they confessed these strong traditional cultural beliefs to me then a
hospice caregiver may also experience the same dilemma.

Areas for Further Research

For further research on this topic one may need to interview a larger sample, but
due to the timeline of this study, I was unable to accomplish such depth. This study
focused primarily on the three cultural factors curanderos, familismo, and fatalism.
However, other sociological factors such as econonrics, availability of help and support
systems, and language obstacles also may effect the use or disuse of hospice and are areas
that present valid topics for research.

It may be the case, that the only difference between an informal Mexican American
hospice and the Anglo American hospice organization is hospice’s affiliation with
biomedicine and the use of pain medication. I believe, the use of medication in hospice
care is another area of further research. Questions focusing on the medicalization of
hospice and its affiliation with the Western biomedical system compared to the Mexican
American’s lack of need for pain medication should be addressed. AS stated earlier an
existing informal Mexican American hospice, whose philosophy parallels the hospice
philosophy, may already exist in the Mexican American community. However, the fact

that hospice is affiliated with biomedicine may result in the underutilization of its services

 

65

by Mexican Americans.

There are possibilities for numerous thesis questions to be developed fiom the
Mexican American’s point of view: For example, Why is there hospice and what is its
purpose? or more specifically, Why would you need an outside service to help one die? A
study which has the time and resources to become better acquainted with the Mexican
American culture will be able to research such questions.

The efl‘ect of the narratives could have been enhanced by interviewing those who
are suffering from a life threatening illness or have recently been involved in a situation
where a loved has fallen ill with a life threatening illness. Because of time restraints, I was
unable to gather a population of Mexican Americans with this criteria. The benefit of a
study such as this would be to examine the efl’ect of pain on a person’s perception of the
“need” for a service such as hospice. One’s perception of the situation can change when
actually faced with a life threatening illness.

This thesis study can be a resource for hospice caregivers, as well as
representatives of the Mexican American community, as a tool for understanding the
variations of care for those who may be faced with a life threatening illness. We live in a
pluralistic society, which ”emphasizes the persistence of ethnic cultural patterns while at
the same time conforming to a common culture in which all can communicate” (Negy and
Woods, 1992). Hopefirlly, the uniqueness of the Mexican Americans culture can be
preserved while also achieving a common bond of communication where hospice and
Mexican Americans are equally able to understand. With such plurality, I see this
challenge necessary in order for the survival of communities, such as the Mexican

American community in Lansing, Michigan, who are struggling to keep their heritage alive

 

66

as well as trying to fit in with the norms of American society.

Why don’t elderly Mexican American women in Lansing, Michigan use hospice?
Based upon my small sample, I found that there was not a perceived “need” for hospice
services. However, as the acculturation of the Mexican American community progresses
hospice services may become an increasingly meaningful option for dealing with death and
dying.

I There seems to be a real need to interface the philosophy of hospice with the
Mexican American perception of its own ethnic approach to death and dying. A
reasonable method to address this need would be a concerted effort to form interpersonal
relationships with the people of the Mexican American community. The most promising
method to address this is to form an interpersonal relationship with the people of the
Mexican American community. By gathering comprehensive narratives from individuals
within the community, a better understanding of their beliefs can be attained and an
organization, such as hospice, can begin to understand the rationale by which they can
provide meaningful service to the Mexican American population.

Hospice needs first to understand and, secondly, to educate the Mexican American
community. Therefore, in order for hospice to become a useful service utilized by the
Mexican American community hospice caregivers need to educate the ethnic community
about their purpose while also realizing the cultural context from which death and dying is
being understood. In conclusion, I believe that hospice may become a service utilized
more frequently by the Mexican American community, but only when its philosophy and

purpose is defined and has meaning for the Mexican American people.

 

APPENDICES

APPENDIX A

Interview Agenda

Age
Where born
English/Spanish native language

Tell the informant a little about my study in so far that it is a study about the
underutilization of Hospice by Mexican Americans in Lansing Michigan.

I will ask you about your life experiences referring to three categories: family, religion,
and folk healers “curanderos”

FAMILY

First just tell me how you ended up here in Lansing, Michigan?
How long have you lived in America?

Are you close with your family?

Are you married?

What is a typical day like for you?

Does your immediate family live close in location to you?

Who would you depend on if you got sick?

When medical decisions are made do you make them individually?
Would you want the doctors to tell you if you had a terminal illness like cancer?
Do you feel obligated to take care of your own family members?
Has anyone close to you fallen ill to a terminal illness?

If so what happened? Who was involved?

RELIGION

Do you consider yourself very religious?

What are your beliefs on death and dying in relation to the church?

How does God play a part in dealing with illness?

What do you think about fate? Do things happen for a reason?

Is illness a punishment from God?

Would you go to the doctor as a way to prevent suffering and pain?

If one is struck ill should one seek help from Doctors to help ease pain and suffering?
If you were to fall ill would you look to the church for support?

Where would you feel most comfortable being in your final days of life? At home or in a
hospital with close family or alone? Who do you want to be a part of your death?
What do you think about the idea of the afterlife?

What are your thoughts about death?

Are you afraid of dying?

67

How would you describe pain?
What does it mean to sufi’er?

CURANDEROS (folk healers)

Have you used curanderos or folk healers?

Are there any curanderos in the areas?

Do you have any folk remedies that you uses at home?

Do you believe that folk remedies work better than medicine from the doctor?
Would you fell more comfortable with a curandero if one was available?

Do you feel comfortable going to the doctor? _

How do you communicate with the doctor? DO you have a close relationship?

HOSPICE

Go over Hospice information sheet

So, Hospice may not be good for you?

Do your views on death and dying fit with the Hospice philosophy?

Does Hospice seem like something that you would benefit from if you or someone close to
you was diagnosed with a terminal illness?

Did you know about hospice before today?

What are some things that might make you apprehensive of using Hospice?

Do you feel comfortable with caregivers coming into your home helping to care for you or
someone close to you with a temrinal illness?

Why do you feel that many people in your community do not use hospice?

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APPENDIX B

(,Que' es Hospicio?

o Acerca del Hospicio

Hospicio es una manera de cuidado especial para las personas quienes padecen de una
enferrnedad no curable. El énfasis es cuidar, no curar. Se centra en ayudar las personas
para aprovechar al maximo cada hora y cada dia durante lo que le queda de Vida
proveyendo comfortabilidad y alivios del dolor.

0 (Que tipo de personas asisten el Hospicio?
Hospicio esta asistido por un conjunto extensivo de profesionales en la salud que puede
consistir de un me'dico, enferrnera, trabajador social, consejero espiritual y otros terapistas.

o (,Dénde queda Hospicio en todo esto?

Hospicio cree que la esperanza es un ingrediente esencial para nuestro sentido de
bienestar, proveyendo soporte y direccién mientras que su enferrnedad progresa y su
forma de esperanza cambia manteniendo su calidad de vida.

- aCuando es apropriado el Hospicio?
Hospicio es una decisiOn apropriada cuando la meta de tratamiento es comodidad y
control del dolor y sintomas fisicos garantisando su calidad de vida.

0 (Es Hospicio un Iugar? LPuedo ser cuidado en casa?

Hospicio no es un lugar, sino una filosofia de cuidado la cual afirma la Vida y existe para
proveer soporte y ayudas para personas en la ultima fase de su incurable enferrnedad para
que vivan lo mas completamente comfortable como sea posible. Todos los programas de
Hospicio enfatizan ayuda en la casa, a pesar si es casa propia o casa de cuidado.

o LPuedo seguir estando cuidado por mi doctor?

Si. Hospicio anima a usted a seguir con su doctor. El Hospicio conjunto coordinara su
cuidado con el (ella). Si no tiene un(a) doctor, el personal del Hospicio lo asistira en
identificar y seleccionar un doctor.

0 LQué pasa cuando necesito estar hospitalizado?

Los programas de Hospicio certificados tienen acceso alas unidades de intemados, los
cuales estan disefiados para satisfacer sus necesidades graves. Cuando es apropriado y
necesario, la ayuda intema se puede proveer en un edificio de Hospicio.

o (,Podra mi seguro cubrir el Hospicio?

Los servicios de Hospicio generalmente estan cubiertos por casi todas las normas de
seguros. El personal del Hospicio le ayudara a determinar la extensiOn de la cobertura

69

médica. Nadie sera negado de los servicios por la incapacidad de pagar.

- (,Puedo salir del Hospicio?

El servicio de Hospicio es nuestra decisiOn. Usted podra mejorarse o estabilizarse hasta
un punto donde ya no es necesaria la ayuda del Hospicio. Sin embargo, si su condiciOn
cambia, usted sera elegible para proseguir los servicios del Hospicio en un tiempo
después.

o 3C6mo puedo obtener servicios?

Para residentes de Michigan, se puede contactar con: Michigan Hospice Organization a1
numero telefénico 1-800-536-63 00 para mas informacién y una lista de programas de
Hospicios disponibles en nuestra area.

Servicios adicionales que se pueden incluir:

0 El control del dolor y otros sintomas fisicos

o Asistencia con ayuda personal y actividades de la vida diaria proveida por
profesionales de salud, incluyendo ayudantes de salud que pueden visitar la casa o
atendentes de casa.

o Soporte para sus seres queridos, por ejemplo, consejo en técnicas de ayuda y también
consejos de luto

o Breve periodos de cuidado para intemados por control sintomatica

o Acceso directo telefénica a1 personal de Hospicio 24 horas diarias, 7 dias a la semana

o Voluntarios preparados para proveer ayuda y compafierismo para usted 0 para proveer
soporte a su atendente de cuidado

o CoordinaciOn de: medicamento, terapia, provisiones, y equipo en casa

Esta informacién fue tomado del folleto Michigan Capital Healthcare Home-based
Services- Visiting Nurse Services: Hospice — Is Hospice an Option for Me?

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APPENDIX C

Forma de Consentimiento

Mi nombre es Lisa Topoleski. Estoy trabajando en un estudio el cual va a ser el
fundamento de mi tesis maestrial en el programa Interdisciplinario en Salud y Humanidad.
Se le ha solicitado a usted participar en este estudio investigatorio explorando las razones
del por que’ los mexicanoamericanos no usan el Hospicio. Mi estudio se llama “Barreras
Culturales frente a] Hospicio: El problema de la inutilizacién del Hospicio por la parte de
los mexicanoamericanos en Lansing, Michigan”. La participacién incluira una entrevista
informal de media hora a una hora, que sera grabado si usted esta comodo con el uso de
grabacién de voz. Si usted decide no ser grabado se tomara notas. Esta informacién sera
interpretada para los propOsitos del estudio.

Cuando se usa relatos en el ensayo investigativo en ningun tiempo se usara su
nombre, para asegurar privacidad. Después de ser interpretados, los casetes seran
borrados.

No hay ningunos riesgos o costos para usted. Las preguntas estaran a su
disposiciOn en cualquier momento ante, durante, o después de la entrevista. Puede
cancelar o parar la entrevista en cualquier momento.

Por participar voluntariamente en este estudio usted esta dando su consentimiento
del uso de la informacién que después sera usado como parte de la investigacién que se
publicara. Se aclara otra vez que su identidad jamas sera revelada y que no hay ningun

riesgo para usted por haber participado en este estudio. Gracias.

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Su firma: Fecha:

Lisa Topoleski B.S.

Masters Candidate

Michigan State University

Interdisciplinary Program in Health and Humanities

72

APPENDIX D

What is Hospice?

0 About Hospice .

Hospice is a special way of caring for a person whose disease cannot be cured. The focus
is on care, not cure. Emphasis is on helping the person to make the most of each hour
and each day of remaining life by providing comfort and relief from pain.

0 What kind of people run Hospice?
Hospice is run by a comprehensive care team of health care professionals which may
consist of a doctor, nurse, social worker, spiritual counselor and other therapists.

0 Where does hospice fit in?

Hospice believes that hope is an essential ingredient to our sense of well-being, providing
support and direction as your illness progresses and the focus of hope shifts to maintaining
your quality of life.

0 When is hospice appropriate?
Hospice is an appropriate choice when the goal of treatment is comfort and management
of pain and physical symptoms to ensure quality of life.

0 Is hospice a place? May I be cared for at home?

Hospice is not a place, but a philosophy of care which affirms life and exists to provide
support and care for persons in the last phase of incurable disease so that they might live
as fully and as comfortably as possible. All hospice programs emphasize care at home,
whether in an individual home or supportive care residence.

0 May I continue to be cared or by my doctor?

Yes. Hospice encourages you to retain your primary doctor. The hospice team will
coordinate your care with him/her. If you do not have one , hospice personnel can assist
you in identifying and selecting a doctor.

0 What happens when I need to be hospitalized?

All certified hospice programs have access to inpatient units designed to meet your
intermittent acute care needs. When it is appropriate and necessary, inpatient care may be
provided in a hospice-contracted facility.

0 Will my insurance cover hospice?
Hospice services are usually covered by most insurance policies. Hospice staff will help

73

you to determine the extent of your medical coverage. No one is refused services for
inability to pay.

0 Can I leave hospice?

Hospice service is our choice. You may improve or stabilize to a point where hospice care
is no longer needed. However, should your condition change, you may be eligible to
resume hospice services at a later time.

o How can I obtain services?
For residents of Michigan, Contact the Michigan Hospice Organization at 1-800-536-6300
for further information and a listing of hospice programs available in our area.

Additional services may include:

Management of pain and other physical symptoms

Assistance with personal care and activities of daily living provided by health care
professionals, including home health aides or home attendants

0 Support for significant others such as guidance in caregiving techniques as well as
bereavement counseling

Shot term inpatient care for symptom control

Direct telephone access to hospice stafl’ 24 hours a day, 7 days a week

Trained volunteers to provide help and companionship for you or to give your primary
caregiver support

Coordination of medications, therapies, supplies, and equipment in the home

Information taken from Michigan Capitial Healthcare Home-based Services-Visiting
Nurse Services: Hospice -- Is Hospice an Option for Me? brochure

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APPENDIX E

Consent Form

My name is Lisa Topoleski, I am working on a study which will be the basis for my
Masters Thesis in the Interdisciplinary Program in Health and Humanities. You have been
asked to participate in a research study exploring reasons why the hospice alternative is
not utilized by Mexican Americans titled “Cultural Barriers to Hospice: The problem of
the underutilization of hospice by Mexican Americans in Lansing, Michigan”. Participation
will include an informal interview averaging 1/2-1 hour which may be tape recorded if you
are comfortable with the use of voice recording. lfyou choose not to be recorded, field
notes will be taken. This information will be interpreted by the researcher for purposes of
the study. When using narratives in the research paper at no time will your name be used
in order to insure confidentiality. After interpreted, the audiotapes will then be erased.

There are no risks or costs to you as an individual. Questions are always welcome
at any point before, during, and after the interview. You may cancel or end an interview at
any time.

By voluntary participation in this Study you are consenting to the use of
information from the interview to be used later as part of possible published research.
Once again at no time will your identity be revealed and that there is no risk to you

whatsoever by participation in this study.

75

 

 

Signature:

 

Lisa Topoleski B.S.

Masters Candidate

Michigan State University

Interdisciplinary Program in Health and Humanities

76

Date:

 

 

 

 

 

 

 

LIST OF REFERENCES

 

 

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