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Through the eyes of patients

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Title:
Through the eyes of patients a phenomenological study of Medicaid
Portion of title:
Phenomenological study of Medicaid
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Smith, Nancy L
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English
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xi, 218 leaves : illustrations ; 29 cm

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Medicaid -- Colorado ( lcsh )
Patients -- Colorado ( lcsh )
Medicaid ( fast )
Patients ( fast )
Colorado ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Bibliography:
Includes bibliographical references (leaves 203-218).
General Note:
Submitted in partial fulfillment of the requirements for the degree, Doctor of Philosophy, Public Administration.
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School of Public Affairs
Statement of Responsibility:
by Nancy L. Smith.

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University of Colorado Denver
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Full Text
THROUGH THE EYES OF PATIENTS:
A PHENOMENOLOGICAL STUDY OF MEDICAID
by
Nancy L. Smith
B.S., California State University Long Beach, 1969
M.S., California State University Long Beach, 1977
M.S., University of Colorado at Denver, 1990
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
_ of the requirements for the degree of
Doctor of Philosophy
Public Administration
1997


1997 by Nancy L. Smith
All rights reserved.


This thesis for the Doctor of Philosophy
degree by
Nancy L. Smith
has been approved by
Peter deLeon, Chair
E. Samuel Overman
Sy ic
Date
- David West


Smith, Nancy L. (PhJ)., Public Administration)
Through The Eyes of Patients: A Phenomenological Study of Medicaid
Thesis directed by Professor Peter deLeon
ABSTRACT
This inquiry, grounded in hermeneutic phenomenological perspectives, was
conducted to discover the patients experience as a participant in the Medicaid program.
The purpose was to describe and interpret the patients experience and to sensitize health
care and public policy professionals regarding the particular experience.
Patients in the inquiry were volunteer participants. Data were generated from
audiotaped and transcribed interviews and the researchers journal. Participants were
recruited from a federally qualified community health center in Boulder County,
Colorado.
The data analysis was guided by the hermeneutic phenomenologic approach of
vanManen. The analysis included several levels of reflection. The first level of reflection
revealed the descriptions and themes of the patients. The patients metaphor of an
Uncertain Journey in their search for health care emerged. In the second reflection, other
literature sources were used to illuminate the experiences of the patients. The themes
were linguistically transformed into five metathemes: Spatiality: Standing in the Second
Line for Health Care; Embodiment: Choosing to Risk; Temporality: Waiting for
Health Care; Relationality: A Compromise to Autonomy and Liberty; and Self-


Advocacy: Creating Hope. Through continued and deepening reflection, the theory of
meaning Power and Control: Counterbalance to Moral Responsibility and the
Boundaries of Community was revealed. Using a conceptual framework drawn from
bioethics, the themes, metathemes, and patients metaphor were integrated to develop the
theory and to come to understand the meaning of the lived experience of the Medicaid
patients. Their individual stories are included.
This research makes a strong plea for further research exploring the health care
providers and system administrators experiences with Medicaid patients. Also called for
is revised curricula for health care professionals to include sensitization to diversity and
social responsibility. Other implications for education and future research in public policy
are discussed.
The form and content of this
>ved. /t recommend its publication.
Signed.
Peter deLeon


CONTENTS
CHAPTER
1. INTRODUCTION......................................................1
Purpose of the Inquiry..............................................3
Phenomenon of Interest..............................................4
Background of the Inquiry...........................................6
Significance to Public Policy......................................11
Personal Intrigue..................................................16
Overview of Dissertation...........................................18
2. METHOD AND PROCESS OF INQUIRY......................................20
Human Science......................................................20
History of Qualitative Research....................................23
Phenomenology as Philosophy and Methodology........................25
van Manen's Methodology............................................29
1. Turning to the nature of the lived experience...............30
2. Existential investigation of the phenomenon.................32
3. Hermeneutic Phenomenological Reflection.....................32
4. Hermeneutic Phenomenological Writing........................32
Methodology........................................................33
Design.............................................................33
Ethical Concerns...................................................39
Permission to Conduct Research.................................39
Protection of Human Subjects...................................39
3. LITERATURE REVIEW..................................................41
Medicaid...........................................................42
Ethics.............................................................45
Autonomy.......................................................45
Nonmaleficence/Beneficence.....................................46
Justice........................................................46
Access to Health Care..............................................47
Medical Sociology..................................................49
vi


Social Distribution of Illness....................................49
Political Economy.....................................................51
4. THEMATIC ANALYSIS:....................................................53
Joannes and Sandras Story...........................................54
An Uncertain Journey..................................................60
Confronting Ogres and Dragons.........................................61
Metathemes and Themes.................................................63
Metatheme I: Spatiality: Standing in the Second Line for Health Care.64
Metatheme II: Embodiment: Choosing to Risk........................71
Metatheme m: Temporality: Waiting for Health Care.................81
Metatheme IV: Relationality: A Compromise to Autonomy and Liberty.. 87
Metatheme V: Self-Advocacy: Maintaining Hope................95
5. A THEORY OF MEANING: DISCUSSION AND IMPLICATIONS.....................101
Coming to Understand Power and Control: Counterbalance To Moral
Responsibility and Boundaries of Community....................101
Power and Control: Counterbalance to Moral Responsibility and Boundaries of
Community.....................................................104
Conceptual Framework.............................................106
Spatiality: Standing in the Second Line for Health Care..........107
Embodiment: Choosing to Risk.....................................Ill
Temporality: Waiting for Health Care.............................113
Relationality: A Compromise to Autonomy and Liberty..............115
Self-Advocacy: Creating Hope.....................................117
Power and Control: Counterbalance to Moral Responsibility and Boundaries of
Community.....................................................119
Dialectic with Other Relevant Research...............................120
Patient Satisfaction.............................................121
Health Care Providers and Medicaid...............................126
Health Services and Outcomes for Medicaid Patients...............132
6. CRITIQUE.............................................................138
Strengths of This Inquiry........................................139
Limitations of This Inquiry......................................142
Summary..........................................................144
7. IMPLICATIONS FOR POLICY: THEORY, PRACTICE, EDUCATION, AND
RESEARCH....................................................... 145
Public Policy: Theory............................................146
vii


Public Policy: Practice______
Public Policy: Education.....
Public Policy: Future Research
148
153
155
APPENDIX
A. HUMAN RESEARCH COMMITTEE REVIEW APPLICATION FORM.... 158
B. POTENTIAL PARTICIPANT FORM.......................160
C. INFORMED CONSENT.................................162
D. PATIENTS STORIES................................164
E. BOULDER COUNTY MEDICAID MANAGED CARE COMPARISON..198
GLOSSARY............................................201
BIBLIOGRAPHY........................................203


This work is affectionately dedicated to
Jim, Morgan, and Cameron Smith
for their enduring confidence, love, and support;
and to my parents,
Walter and Eleanor Morgan,
who gave me the gift of knowing both the
joy and value of education


ACKNOWLEDGMENTS
I gratefully acknowledge the skill and advisement of my thesis committee
both individually and collectively, during the completion of this inquiry. I am
particularly indebted to my chair, Peter deLeon, for his unwavering confidence and
support, exceptional insight and expertise in public policy, and his enthusiastic use
of editing skills. I thank Kathy Boyd for her expertise in the skillful use of ethics in
public policy and for the merging of traditional research outcomes with this model.
Marilyn Krajicek provided thoughtful critique in the application of these research
methods throughout the project Sam Overman provided the original enthusiasm
and support for this research, recognizing the need for a new dimension in policy
research. His all too premature death prevented his seeing its completion. David
West through his extensive administrative experience with the Medicaid program
and his strong advocacy for Medicaid patients, contributed valuable ongoing critique
and analysis. I thank each of them.
I also wish to thank the Clinic and its staff who participated in recruiting the
patients who participated in the inquiry. This research, however, would not have
been possible without the patients. I thank them for inviting me into their homes, to
share the very sensitive and personal stories of their health care experiences.
x


To the many colleagues, friends, and students who shared these years with
me, who continued to believe in and support me; I thank all of you. Finally, I would
like to thank my husband, Jim and my children, Morgan and Cameron who all
provided the continual encouragement necessary to achieve a dream.


CHAPTER 1
INTRODUCTION
Health policy is designed and implemented to provide both the access and
financial support to identified health care services for specific populations.
Improving access to medical services only affects about ten percent of health status
indicators, however, leaving ninety percent of the indicators unaffected by policy
implementation (Wildavsky, 1992, p. 284). Wildavsky also considers two potential
points for relating cost to quality: (a) at the level of the individual or (b) at the level
of the collectivity or public services (Wildavsky, 1992, p. 301). Whether
implemented at the federal, state, or local levels, health policy is ultimately designed
to provide a human service.
When the Eighty-ninth Congress adjourned in 1966, it had passed some of
the most far-reaching health policy ever enacted. The implications of this policy
will be felt well into the twenty-first century. During its legislative session, this
Congress had appropriated more money for health than in the previous 168 years
(Litman and Robins, 1991, p.3). Some even described its actions as a turning point
in health care law (Forgotson, 1967).
l


Medicate and Medicaidmore properly. Titles XVTH and XIX of the 1965
amendments to the Social Security Actwere passed during this session and
acknowledged the continuing involvement of the federal government in health care
as well as a mandate for the nation's approach toward a pluralistic health care
economy. This legislation was also seen by many as an attempt to improve
distributive justice and equity through the correction of social and economic wrongs
(Fein, 1980). Medicare was designed to provide both inpatient and ambulatory
health care services for the elderly, and at the same time, to decrease the financial
burden for their families. Medicaid specifically was seen as a way of improving
health care services to the poor and ensuring greater equity in services for this
population across the states than had prevailed under the Kerr-Mills program,
Medicaid's predecessor (Holahan and Cohen, 1986, p. 1; and Marmor, 1973, p. 79).
In a manner that no one had predicted, however, the costs of the Medicaid
program spiraled almost endlessly upward, consuming an ever-increasing and
disproportionate share of both federal and state funds. Initially, Medicaid provided
reimbursement to health care providers and hospitals on a reasonable-cost basis.
Congress, in reaction, instituted a variety of cost containment strategies beginning
with the 1981 Omnibus Budget Reconciliation Act (OBRA). These and other
similar cost containment initiatives have continued in a series of acronymial reforms
(e.g., DRG, DEFRA, COBRA, etc.), with litde substantive relief. As a result, there
2


i
have been fewer economic incentives and many times disincentives for health care
providers to provide access and health cate services for Medicaid patients.
Since the early 1990s, the health care system has undergone a massive
evolution. The prevalence of managed care systems in the market place has recendy
created increased competition to enroll Medicaid patients as well as other target
markets. How, and if this competition will alter the Medicaid patient's perception of
health care remains to be discovered.
Purpose of the Inquiry
The purpose of this descriptive, exploratory research study is to uncover and
describe the meaning for an individual to acquire and use Medicaid health care
coverage. Meaning here refers to "...the way that a person experiences and
understands his or her world. Lived meanings describe those aspects of a situation
as experienced by the person in it" (van Manen, 1990, p. 183).
The discovery and description was accomplished through personal
interviews between patients and the researcher. Individual's memories of the first
awareness of Medicaid, the enrollment process and specific encounters with health
care providers and the health care system were explored. The inquiry focused upon
phenomenological reflection of data regarding patients' lived experiences.
3


Hermeneutic investigation of the phenomenon in selected literature, uncovering
covert as well as explicit meaning, was also used in data analysis.
Phenomenon of Interest
The phenomena investigated are the patients' lived experiences acquiring and
using Medicaid health care insurance in the health care system. The study uncovers
''originary" experiences of the phenomenon by focusing on the patients "secondary
remembrance or recollection." Schutz (1967) describes secondary memory in this
way:
We accomplish it either by simply laying hold of what is
recollected...or we accomplish it in a real, reproductive, recapitulative
memory in which the temporal object is again completely built up in
a continuum of presentifications, so that we seem to perceive it again,
but only seemingly, as if (p. 48).
The observed phenomenon included the dialectic between the needs, rights,
and wants of these patients. The services and processes of the Medicaid program
have been determined and administered through both bureaucratic and political
systems to provide health care for an underserved population. The question
remains, however, as to whether these processes have been translated into a program
that facilitates both the needs and the rights of this group of patients. In other
4


words, while Medicaid was possibly designed to meet the medical needs of patients,
one needs to ask if its bureaucracies have gained their trust.
Empowerment of the individual, for example, has become a central tenet in
health care planning at both the micro-and macro- levels (World Health
Organization, 1986; Wallerstein and Bemestein, 1988; Fahlberg, Poulin, Giordano,
and Dusek, 1991). Conceptually, empowerment developed during the 1960s and is
credited to the Brazilian educator Paulo Freire (1973). While his work developed
around class oppression, the pedagogy that reverses the dehumanization and
objectification of vulnerable people has been applied to many disenfranchised
peoples-particularly those who are at risk for ill health. Current examples of patient
empowerment strategies in the health care arena include the Patients' Bill of Rights
(American Hospital Association, 1992), the Patient Self-Determination Act (PL
101-508,1990), Health Plan Employer Data and Information Set (HEDIS) (National
Committee for Quality Assurance, 1996), Colorado Medical Treatment Decision Act
(15 Colo.Law.645 Article 18,1986; SB 92-3, 1992), and advance directives.
Admittedly, the concepts and issues surrounding the care a Medicaid patient
receives are exceedingly complex. However, even in the face of the development of
considerable patient advocacy and empowerment, the acquisition of a Medicaid card
does not guarantee empowerment for these individual patients within the health care
system.
5


Background of the Inquiry
While there have been many changes to the original 1965 legislation, and
many sociopolitical struggles concerning both the amount and forms of government
assistance to individuals through entitlement programs such as Medicaid, the
original intent of providing access to health care services for the poor is still the
primary mission of the Medicaid program. Health care services for the aged, blind
and disabled, and impoverished adults and children are provided within its eligibility
criteria.
The issues that have developed with the Medicaid program have not
occurred in isolation from the health care system as a whole. Many of the same or
similar issues have developed in other government programs such as Medicare and
in the private sector, as well. Stone, in her discussion of clinical authority in the
construction of citizenship, strikes the analogy between policy and clinical reasoning
or medical decision-making. She asks whether "the medicalization of social
problems is the result of professional imperialism...with clinical reason offering]
politicians, judges, and other arbiters of dispute an attractive escape" (Stone, 1993,
p.64). As the nation has snuggled to resolve the need for health care services within
the constraint of limited economic resources, more than 41 million or nearly 18% of
Americansmost of them in working families are without insurance and access to
health care services (Health and Human-Services, 1996).
6


Within Colorado, the Medicaid program has moved toward a system of
managed care for its close to 270,000 clients. In this system, Medicaid clients, upon
enrollment, select a primary care physician (PCP) or a health maintenance
organization (HMO). This policy, however, hardly implies universal coverage. In
State fiscal year (SFY) 93-94,49% of Medicaid clients had neither a PCP or an
HMO and were basically left uncovered (Colorado Department of Social Services,
1995, p. 27).
While there has been an immense amount of health services research done,
the investment has been in preponderantly quantitative designs and methodologies
including cost-benefit analyses, economic analyses, retrospective audits, or
evaluations that are treatment oriented. Another equally important outcome
measurement in health services research attends to what happens to the patient, not
merely his or her disease. This research occurs both within the health care system
and examines the outcomes of health care interventions and has more recently been
added to this body of knowledge and literature. In fact, what have come to be
known as "outcome" studies based on national data were first released in the early
1990s from the Institute of Medicine within the National Institutes of Health.
Funded through the Omnibus Budget Reconciliation Act of 1989 (Public
Law 101-239), the Agency for Health Care Policy and Research (ACHPR) was
established to enhance the quality, appropriateness, and effectiveness of health care
7


services through a broad program of both "scientific" research and information
dissemination. The "scientific" research traditionally has focused on alternative
strategies for the prevention, diagnosis, treatment, and management of patient
conditions. One portion of ACHPR information dissemination mission includes
research-based clinical practice guidelines intended to specify how various adverse
health conditions are most effectively prevented, diagnosed, and treated to ensure
the effective and appropriate use of health care resources. The other portion of
information dissemination covers a broad array of activities to educate both health
care providers and consumers about research guidelines and to promote the
assimilation of the information into clinical practice, ultimately providing a
uniformly higher standard of health care and improved consumer choice.
While these multi-million dollar research projects involve large multisite and
multidisciplinary teams to evaluate alternative services, procedures, and
management strategies for specific clinical conditions, they are clearly designed to
address only certain empirical outcomes such as cost, mortality and morbidity. For
example, one early project was "Back Pain Outcome." The research team would
assess alternative types of lumbar spine surgery, a variety of nonsurgical
interventions, and diagnostic tests commonly used for patients with back pain.
8


In developing the back pain practice guideline, national and statewide
hospital discharge data, Medicare claims data, and surveys of patients
and physicians will be the basis for the formal analysis of the surgical
decision that will incorporate probabilities, patient preferences for
various health states and costs (AHCPR, 1991, p. B-l).
Nowhere, however, has ACHPR research planned to have any consideration
of the qualitative aspects of living with back pain versus medical and/or surgical
intervention and the quality of life without intervention, post-intervention, and/or
hospitalization. There would be no longitudinal examination evaluating what
happens to the individual people and his or her lifestyle two years, five years, or ten
years after the intervention. What these procedures, or the lack thereof, mean to
patient's livesto their productivity, to their quality of life, to their activity level
years after we have determined empirically that the lumbar laminectomy is the most
cost-effective route to relieve chronic back painhas been left unanswered, indeed,
even unposed.
Moreover, no outcomes research from the AHCPR has been funded
specifically for patients who must rely on Medicaid coverage. There are many
indicators, such as socioeconomic factors, that would lead one to argue that health
care services needed and provided for this population might be significandy
different than services provided for either the private payor group or Medicare
population. In 1995, it was estimated that 10.5% of the countrys population was
9


r
enrolled in Medicaid and another 1.6% were dually enrolled in Medicare and
Medicaid (HCFA, 1996, p. 372). This sizable proportion of the population has
suffered from a lack of directed research.
Relying on the existing welfare system, categories of assistance under which
persons may qualify for Colorado Medicaid include, but are not limited to: Aid to
Families with Dependent Children; Baby Care/Kids Care (pregnant women and
children through age 6 in families with incomes less than 133% of the federal
poverty level); Foster Care Children; undocumented aliens; qualified Medicare
beneficiaries (persons with limited income and resources); and qualified working
disabled persons (less than 200% of federal poverty level) (Colorado Department of
Social Services, 1994). While not an exhaustive listing, it does support the
argument that there are most probably significant differences in expected outcomes
and lifestyles between the private payor or Medicare populations and the typical
Medicaid populations.
Ingram and Schneider (1991,1993) illuminate the rationale, the choice, and
the consequences of target populations such as the Medicaid recipient in public
policy. They consider the notion that public policy's intent is to alter the
problematic behavior of the target population through statutory design. They
identify the social construction of the Medicaid population as "dependent"
Composed primarily of children, mothers, and the disabled, the dependent group has
10


weak political power and benefits are undersubscribed along with burdens being
oversubscribed. Ingram and Schneider argue that "constructions become embedded
in policy as messages that are absorbed by citizens and affect their orientations and
participation [in the government]." The messages to this dependent group are they
are "powerless, helpless, and needy...and that they get attention only through the
generosity of others...Even when beneficial policy is provided, it is accompanied by
labeling and stigma" (1993, pp. 335,342). In any case, poverty is an unfortunate,
debilitating condition; to be treated as a powerless, helpless, and needy dependent
only worsens the ignominy.
Significance to Public Policy
There is a growing movement toward reconstructing policy analysis in a
postpositivist, more democratic perspective. Ascher (1987), deLeon (1992, 1997),
Denhardt (1984), Dryzek (1982,1990), Fishcher (1993), Hawkesworth (1988),
Torgerson (1992) and others have argued that the "scientific" regimen in the policy
sciences has been proven incomplete and that the interdependence of both positivist
and postpositivist methodologies is vital. These epistemological considerations are
"designed to supply a discursive framework capable of transcending the limits of the
technical conception of rationality that underlies much of policy-oriented social
science" (Fischer, 1993, p. 336). The intent of this framework would be to provide
11


a broader level of understanding, a point at which "the interpretive must always
confront the empirical" (Fischer, 1993, p. 337).
In addition, Gillroy has argued the ethical poverty of cost-benefit methods as
a basic standard for public policy choice. He contends that a principle with "more
distinctly moral weight is needed to judge ends...of policy choice" (Gillroy, 1992).
Denhardt (1984) has described the inadequacy of the link between theory and
bureaucratic practice. He identifies that practitioners want two things from public
policy theory: (1) explanations and understandings from which new approaches to
administrative work can be fashioned; and (2) a framework in which the individual's
experience can be seen as a meaningful part of something larger and more
important He also argues that
an approach to knowledge acquisition that seeks to objectify human
experience can hardly be expected to comment on the meaning of
that experience; indeed, it detracts from that meaning...To objectify
that experience is to rob it of the very character or texture that makes
it significant to us...Moreover, commitment to a mode of knowledge
acquisition that neither objectifies nor depersonalizes is a far better
model for the relationship between theorists and practitioners and
between public servants and their clients than a mode that does. The
rational model can only carry us so far (1984, p. 157,158).
Since 1965, there have been multiple Medicaid program changes
implemented over the course of the policy with little evaluation other than
economic. There are data available concerning the numbers of enrollees, services
12


utilized and expenses. There are also data regarding the number of providers who
"accept assignment from Medicaid, as well as their level of reimbursement These
data are kept by the states and forwarded to the federal level.
There is, however, no qualitative information available about the personal
experience of being a Medicaid enrollee: What for instance, characterizes the ease
of application or access to health care services? What are the perceived attitudes of
health care providers toward Medicaid enrollees? Are there health care facilities
available for access once coverage is provided? Or what are the patient's
perceptions about the quality of health care services given and benefits to the
enrollee? It is this sort of data vacuum that typifies concern and suggests that a
patient's humanistic requirements are left unaddressed and surely unfulfilled by
current Medicaid practices and protocols..
Hermeneutic phenomenology provides a critique of reasoning and
objectification as well as an alternative research methodology. The outcome is to
understand respectfully the lifeworld of the Medicaid recipient to evaluate critically
what is uninformed or troublesome from the perspective of these patients, and to
discover potential sources of innovation within everyday practice. Additionally,
what is inherently "good" about these experiences will also be discovered. The
philosophical approach with this method is clearly not one of social engineering,
where what is understood as an enlightened objective view of the lifeworld-only
13


needs to be rationalized and better controlled by public policy (Benner, 1994, p. 123;
Bellah, 1982).
Rist (1994) addresses the use of qualitative approaches in what he defines as
the third state of the policy cycle, or policy accountability, when the policy is
sufficiently mature that questions of accountability, impacts, or outcomes can be
addressed. When a program reaches this evaluative point, "qualitative research
provides a window on the program that is simply not available in any other way" (p.
551). Moreover, Rist also admonishes policy-makers to "not take for granted that
what was intended to be established or put in place through a policy initiative will be
what one finds after the implementation process is complete" (p. 552), as literally
hundreds of implementation studies have richly demonstrated.
Dryzek, in Discursive Democracy, vividly describes the "mismeasure of
political man" in which the traditional use of opinion surveys
function in a particularly subtle and unexpected way to reinforce a
prevailing political order of domination and control...and obstructs
the discursive democratization of politics, which would involve more
in the way of active dialogue... (Dryzek, 1990, p. 153).
This phenomenological-hermeneutic approach provides the data necessary to
allow for the serious consideration of a variety of individual subjectivity regarding
Medicaid and its public policy value.
14


If policy-makers are to develop effective, efficient policies that have "moral
weight", data are needed regarding the effect of those policies on the individuals
affected by them, whether positive or negative. Understanding their effects makes it
possible to consider the concepts of good and ethical concern that we hold in
common and in distinction. Interpretive phenomenology can be a powerful
recognition practice that allows other voices to be heard besides the usual clinician,
offering an alternative to an ever-increasing economic, exchange-oriented view of a
society made up of isolated individuals with rights (Sandel, 1982).
These studies can uncover and extend notions of the good life, common
goods, and how to go about treating one another with increased powers of
understanding without diminishing others through diagnosing deficits and
normalizing each other (Benner, 1994, p. 123). In short, this dissertation fulfills the
requirement to address the non-empirical nature of public policy inquiry, which as
Yanow tells us, "...policy scientists have increasingly recognized the necessity,
indeed, the centrality of interpretation" (Yanow, 1995, p. 111).
While it is admittedly a limited investigation, this inquiry does shed some
light on the lived experiences of Medicaid patients in the State of Colorado.


Personal Intrigue
In my own professional experience as a nurse practitioner and as a program
administrator in ambulatory care, I have had numerous opportunities to hear stories
from patients as well as other health care providers concerning Medicaid and its
personal impact on both patients and providers. These stories, always anecdotal but
nevertheless poignant, stimulated a need to explore them more folly.
For instance, past descriptions of an illiterate gentleman being given a 17-
page application required to be considered for Medicaid enrollment, of calling every
physician listed in a telephone directory and finding no one who would accept a new
Medicaid patient, of waiting three months to find out about eligibility when illness
prevents work, of being allergic to every antibiotic on the Medicaid formulary and
told there was no alternative are but a few stories shared by patients in the past.
The following is a series of personal journal entries from 1988 concerning
one of these clients:


Tuesday: Mitch (a pseudonym) presented at the clinic this afternoon.
He's 47 years old and was having difficulty breathing. He's been
independent his entire adult lifecollecting, selling, and trading
tools to provide for himself. He's been divorced for 20 years and has
no family nearby. Mitch has always prided himself on his self-
sufficiency. This illness has taken that away. He talked about having
to take charity from his friendshow much he hated having to ask for
help. He's never had to do it before. He lost his apartment this last
month because he couldn't pay the rent after not working for 6 weeks.
He's been living with friends and/or sleeping in his car and just
asking for a shower from one of his friends. He's willing to do some
handyman work around the clinic in exchange for his care. This
looks like, though it will be a much longer time to get well enough to
work again.
Wednesday: We saw Mitch again today. He's 57" and 317 pounds.
He can't get his boots off because his feet are too swollen. He still
can't breatheeven with the medication. He's living in his car. It
looks as if he has some sleep apnea [cessation of respiration during
sleep] as well. How will we get him 02 [oxygen] in his car? Who
will pay for it? We need to piece together enough resources to get
him to a point where he can work again. Its really difficult trying to
help preserve a person's dignity and self-respect in this system. I
think the two of us [nurse practitioners] can get enough pro bono
work done to see where we are before he is seen at Social Services.
17


Friday: Jan went with Mitch to Social Services today. The social
worker thinks he will probably qualify for Medicaid. The application
she handed to him to complete was 17 pages! Mitch can't read or
write. We did get a sleep study slot for him at the Davis Pavilion
no charge! How do we get him there? We also need to get him
"cleaned up" before he goesthat could be a pretty humiliating
experience for him. Jan said, "Dont worry about it, 111 figure it out"
Well all help to cover her other patients while she's doing this. We
also need to work with the Boulder County Housing Authorityhe
needs a place to live. Hell never get better enough to return to work
without it
Additionally, there was a need to give these stories, these people, a more
public voice. White suggests that this knowledge and positive valuation of
difference to "do more to empower or to foster the emergence of such voices
(White, 1991, p. 110). As discussed earlier, this population tends to be viewed as
dependent and politically weak. With this research, there is an opportunity for
others, who may have more political power and influence, to see this particular
public policy through the eyes of patients and take action.
Overview of Dissertation
This dissertation is composed of seven chapters. The first chapter provides
an introduction and background for the inquiry. Chapter 2 discusses the method
and process of the inquiry, including an historical contextual background of the
philosophy and phenomenological method. Chapter 3 presents the literature review.
Chapter 4 presents the thematic analysis of the data. Chapter 5 discusses the theory
18


of meaning, while Chapter 6 is a critique of this inquiry. Lastly, Chapter 7 presents
implications for public policy: theory, practice, education, and research.


CHAPTER 2
METHOD AND PROCESS OF INQUIRY
This chapter provides an overview of human science, qualitative research,
phenomenology, hermeneutics, and van Manen's method1. Also presented are
descriptions of the data collection, preparation, and analysis process. Each has its
unique developmental trajectory intersecting within van Manen's method.
Human Science
The movement toward developing a human science tradition with new and
distinct methodologies began in the 1800s. This occurred in addition to the largely
successful and proven natural science paradigm. The term "human science" first
appeared in the work of Dilthey in his lEinleitung in die Geisteswissenschaften
(Introduction to the Human Sciences) (1883). It was Dilthey's position that "human
experience does not take place in a vacuum but is formed and integrated into the
psychophysical existence of persons" (Polkinghome, 1983, p. 285). He was known
to also use the terms "sciences of society," "sciences of culture," and "moral
sciences" to describe his approach.
lSome words or phrases unique to this area of inquiry are defined in the Glossary.
20


There has been common belief that science, true empiricism if you will,
exists only in the positivist tradition of its founders Galileo and Descartes. These
two early scientists worked in mathematical models, experiments and mind-body
dualism. Fjelland and Gjengedal use an interesting exemplar to move one
conceptually and visually toward the more humanistic tradition. They describe
Galileo's observation of "smoke clouds" from a bonfire appearing at different
intervals. In the close observation and measurement of the intervals, Galileo is
looking for a mathematical law. They further describe that if Galileo were to realize
suddenly that the smoke clouds were actually "signals," his entire interpretation
would change. They suggest that Galileo would want to understand them. Instead
of measuring their intervals and observing them as natural phenomena, the clouds
would become objects of language as well (1994, p. 9).
From the broadest view, human science today is considered to investigate all
of the experiences, activities, constructs, and artifacts that would not now exist...if
human beings had not existed...The object of human science is the elucidation and
understanding of this world (Polkinghome, 1983, p. 289).
When a question is explored through one of the human science designs, the
kind of knowledge generated is substantively different For example, throughout
recent medical science, nominally thought to be a natural science, there have been
thousands of clinical drug trials evaluating the efficacy of chemotherapeutic agents
21


in the cure or treatment of neoplastic, or cancerous disease. The efficacy of these
drugs against specific types of cancers and the specific side effects,
contraindications, idiosyncratic reactions, and dosing to achieve therapeutic levels
among many other criteria. With the addition of a human science approach to such
an inquiry, more information regarding the effect of these chemotherapeutic agents
on the person would be discovered. For example, what are the feelings a person has
being injected with drugs so toxic that human cells are exterminated? What is the
terror like for individuals knowing that the next cycle of chemotherapy is scheduled
and the last one made them so physically sick they were non-functional? These are
areas of discovery appropriate for an human science inquiry. Nor are they
unimportant in either the diagnostic or therapeutic worlds of medicine.
In 1973, Kockelmans identified that there were three primary approaches to
human science: (1) the empirical; (2) the descriptive [phenomenological] and (3)
the hermeneutic (p. 246). Each approach is based upon its own set of assumptions
and has its unique methodology. As noted above, the empirical inquiry avenue has
been well attended. It is from the phenomenological and the hermeneutic
approaches that this study is designed.
22


History of Qualitative Research
Qualitative research is a field of inquiry in its own right It crosscuts
disciplines, fields, and subject matter. A complex, interconnected
family of terms, concepts, and assumptions surround the term
qualitative research (Denzin and Lincoln, 1994, p. 1).
Denzin and Lincoln describe the history of qualitative research in terms of
"The Five Moments" (1994, pp. 7-11). Beginning in the early 1900s and continuing
until World War H, the Traditional Period, or first moment, is characterized by the
fieldwork of Bronislow Malinowski, Gregory Bateson and Margaret Mead. Their
research consisted of field observations of other cultures and peoples who were
foreign. These early observations were done under the guise of the positivist
scientific paradigm.
The second moment is considered the modernist phase and continued into
the 1970s. While the works of these early researchers were still clearly valued, the
formalization of qualitative methods was a priority of this period. Postpositivism
was the primary paradigm and yet scholars were trying to address the concerns and
arguments of the positivists such as internal and external validity. Often referred to
as the "golden age," it was during this second moment that the "new" interpretive
theories emerged as legitimate, rigorous methodologies including
ethnomethodology, phenomenology, critical theory, and feminism. Becker, Glaser
23


and Strauss, Strauss and Corbin, and Miles and Huberman were the scholars
developing these methodologies.
The third moment is referred to as "blurred genres" and lasted from 1970-
1986. It was a period of diverse paradigms and methodologies. Greets posited that
the positivist approaches were "giving way to a more pluralistic, interpretive, open-
ended perspective" (1994, p. 9). The naturalistic, postpositivist, and constructionist
paradigms evolved during this period with Wolcott, Guba, Lincoln, Stake, and
Eisner being notable scholars. In addition, several qualitative journals were being
published by this time including: Urban Life, Qualitative Sociology, Symbolic
Interaction and Studies in Symbolic Interaction.
The mid-1980s brought the fourth moment, also known as the crisis of
representation. There were struggles around new models of truth and method and
more specifically interpretive writing. It was the first time that "fieldwork" and
interpretive writing blurred together.
Denzin and Lincoln describe the dual crises of representation and
legitimization confronting qualitative researchers as two assumptions (1) that
qualitative researchers can capture the lived experience and (2) a need to re-think the
terms validity, generalizability, and reliability. The fifth moment is the present and
is characterized by these dual crises.
24


This fifth moment is currently evolving with new epistemologies, a more
action-oriented approach to research, and theories being read in narrative such as
Tales of the Field (van Manen, 1988). Lincoln also predicted the development of
more localized and small-scale theories fitted to specific problems and situations
(1993).
Phenomenology as Philosophy and Methodology
Phenomenology, a method of epistemologic inquiry attributed to Husserl
(1859-1938), makes a radical departure from the Cartesian dualism, a view of the
world that separates subjective and objective data. Husserl was the first philosopher
to give a systematic description of the "life world." The aim of phenomenology is to
discover the meaning of an experience, as if seeing the phenomenon for the first
time for oneself. The beginning point for philosophical reflection in this method is
neither historical nor theoretical, but "a description of the presence of man in the
world and the presence of the world for man" (Stapleton, 1983, p. 9). There are two
key concepts of Husserlian phenomenology: (1) an orientation toward being of the
world and (2) the concept of certitude of evidence or a presuppositionless approach
to inquiry (Ray, 1994, p. 120).
The term phenomenology derives from the Greek word phenomenon which
means "to show itself' (Heidegger, 1962, p. 57). Ray further describes
25


phenomenology as an "epistemologic inquiry into and commitment to describing
and clarifying the essential structure of the lived world of conscious experience"
(Ray, 1994, pp. 118-119). Inquiry questions and interview questions in
phenomenology center around the meaning of experiences such as, What is it like to
have chemotherapy?
Also part of Husserl's approach as a philosopher who was also interested in
rigorous science, was epoche, or "bracketing," the researcher's presuppositions. For
instance, in an inquiry true to Husserl's method, interview questions would not be
pte-determined, but would flow within the context of the interview, i.e., reflect the
interviewers freedom of presuppositions.
After a personal struggle with this strategy, he decided that the roots of our
presuppositions lay deeper than he originally anticipated. In Spielberg's phrase, he
moved from "turning to the object" to "transcendental subjectivity or a turn to the
subject" (Spielberg, 1984, p. 77). This evolution allowed the "entire spiritual force
of Husserl's phenomenology to confer meaning by the knowing ego (or self)
reflecting on itself' (Ray, 1994, p. 119).
Hermeneutics, an interpretive method for understanding text, allows for the
study of the person in the situation. It stems from the study of texts and was
originally developed as a tool of biblical exegesis, jurisprudence, historical research
and literary criticism. It assumes the study of everyday activity and practices the
26


relational issues are distinctly different from the study of natural objects or
physiological events (Benner, 1985, pp. 5-6). Benner further elucidates that these
kind of exemplars can provide particular patterns of meaning of people in particular
situations and for preserving both meaning and context
Phenomenology was reinterpreted by Heidegger to include the interpretive or
hermeneutic through the expansion of disclosing the horizon of evidence by
uncovering presuppositions, not eliminating them as did Husserl. Heidegger moved
toward his central ontological approach as being in the world. To Heidegger, the
world is the "set of relationships, practice and language that we have by virtue of
being bom into a culture" (Benner, 1994, p. 47).
Gadamer (1990) further expanded the work of Husserl and Heidegger to
describe hermeneutics as a method of illuminating the ways of being in the world
interpreted through language. More importantly, he believed that understanding is
the fundamental way people exist in the world.
One particular hermeneutic phenomenological approach, attributed to
Heidegger, has the following assumptions: (1) human beings are social, dialogical
beings; (2) understanding is always before us in the shared background practicesit
is in the human community of societies and cultures, in the language, in our skills
and activities, and in our intersubjective and common meanings; (3) we are always
in an hermeneutic circle of understanding; (4) interpretation presupposes a shared
27


understanding; and (5) interpretation involves the interpreter and the interpreted in a
dialogical relationship. Benner developed the Heideggerian approach to understand
specifically workaday practices and experiences of health and illness through
finding exemplars or paradigmatic cases that embody the meanings of everyday
practices (Heidigger, 1962; Benner, 1994).
Ricoeurs view of phenomenology supported Husserl, Heidigger, and
Gadamer. "Phenomenology remains the unsurpassable presupposition of
hermeneutics. On the other hand, phenomenology cannot constitute itself without a
hermeneutical presupposition" (Ricoeur, 1981, p. 101). Ray credits Ricoeur with
deepening
our understanding of the relationship between the ontology of human
reality (being in the world) and the epistemology of what is to be
know (being of the world) and secures the link between
understanding meaning and self-understanding (Ray, 1994, p. 122).
There are three separate schools of phenomenology for applied research: (a)
eidetic structure; (b) interpretation of phenomena and (c) the Dutch school. Husserl
falls in the eidetic or descriptive structure. Heidegger moved to establish the
interpretation of phenomena "school." The Dutch "school" is a combination of
description and interpretation.
It is in the Dutch school that the approach established by van Manen falls.
Ray describes van Manen's research method as
28


Influential in all of the human sciences because it clearly articulates
the interrelationship of phenomenology, hermeneutics and semiotics,
and a research process of textual reflection that contributes to
understanding practical action (1994, p. 122).
van Manen's Methodology
This inquiry follows van Manen's (1984) method with its four concurrent
processes (See Table 1). While van Manen tends to merge the philosophical
underpinnings of Husserl and Heidegger, Benner (1994) claims that his
methodology is an effective approach for the novice researcher in hermeneutic
phenomenology. The human science that van Manen proposes
[A]ims at explicating the meaning of human phenomena (such as
literary or historical studies of texts) and at understanding the lived
structures of meanings (such as in phenomenological studies of the
lifeworld)....The fundamental model of this approach is textual
reflection on the lived experiences and practical actions of everyday
life with the intent to increase one's thoughtfulness and practical
resourcefulness or tact. Phenomenology describes how one orients to
lived experience, hermeneutics describes how one interprets the
"texts" of life, and semiotics is used here to develop a practical
writing or linguistic approach to the method of phenomenology and
hermeneutics (van Manen, 1990, p. 4).
In addition, personal contact was made with Professor van Manen at the
University of Alberta by this researcher to discuss the proposed research. The
discussion included the appropriateness of the methodology for the question as well
29


as the implementation of the four concurrent process used in his method. Professor
van Manen suggested the use of the methodology for the question to be answered
was appropriate (personal communication, Spring 1996).
Table 1 provides an overview of van Manen's methodology that will be used
for this inquiry, with a more detailed discussion to follow.
1. Turning to the nature of the lived experience
The question guiding this inquiry is, What are the lived experiences of a
patient acquiring and using Medicaid insurance? Initial interview questions posed
to participants included, "Tell me what it was like for you to apply for Medicaid" or
"What was your first experience as a Medicaid patient like?" or "How have your
experiences been the same or different than when you had private insurance?"
Researcher's perspective. This phase also includes explicating researcher
biases and assumptions and bracketing these, along with knowledge and pre-
understandings. A personal research journal is used for writing and reflection. A
statement of researcher biases and assumptions is also recorded in the journal.
30


Table 1 van Manen's Method of Phenomenology: A Summary
Concurrent Process Activities Within
1. Turning to the nature of lived experience Researchers perspective: also includes explicating researcher biases and assumptions Orienting to the phenomenon Formulating the phenomenological question Explicating assumptions and preunderstandings
2. The existential investigation Exploring the phenomenon: generating data; using personal experience; tracing etymological sources; searching idiomatic phrases; obtaining experiential descriptions from participants; locating experiential description in literature Consulting phenomenological literature
3. Phenomenological reflection Conducting thematic analysis: uncovering thematic aspects; isolating thematic statements; composing linguistic transformations; thematic description from artistic sources Determining essential themes
4. Phenomenological writing Attending to the speaking of the language Varying the examples Writing; re-writing
Note. Adapted from "Practicing Phenomenological Writing" by M. van Manen,
1984, Phenomenology and Pedagogy, 2(1), p. 5.
31


2. Existential investigation of the phenomenon
Exploring the phenomenon is the means of generating data through
interviews with patients as well as consulting the phenomenological literature.
Materials to be investigated included: personal experiences of the patients;
etymology of relevant terms; idiomatic phrases and expressions; and the literature
relevant to the identified phenomenon in the transcripts. This content is detailed in
Chapter 4.
3. Hermeneutic Phenomenological Reflection
van Manen describes this phase of his method as the time when the
researcher tries to grasp the essential meaning of something. It is a "process of
reflectively appropriating, of clarifying, and of making explicit the structure of
meaning of the lived experience" (van Manen, 1990, p. 77). More explicidy, the
themadc analysis of the interviews with padents will be done during this phase. The
thematic analysis will be found in Chapter 4.
4. Hermeneutic Phenomenological Writing
The creation of a phenomenological text is the goal of this inquiry, van
Manen says this text is like poetry, in that it speaks partly through silence: it means
more than it explicitly says (van Manen, 1990, p. 131). This is an on-going process
32


throughout the inquiry and is not a process that is merely completed as a separate
phase, van Manen characterizes this writing as
(a) uniting us more closely with what we know; (b) distances us
from the lifeworld and yet draws us more closely; (c)
decontextualizes thought from practice and returns thought to praxis;
(d) abstracts our experience of the world and yet concretizes our
understanding; and (e) objectifies thought into print and yet it
subjectifies our understanding of something that truly engages us
(van Manen, 1990, pp. 127-129).
Again, the hermeneutic phenomenological writing will be found in Chapter
4.
Methodology
In this inquiry, methodology refers to the broad philosophic framework
consistent with the traditions of human science and the more specific methods of
van Manen (Dilthey, 1883; Polkinghome, 1983, p. 285; van Manen, 1990), as have
just been outlined.
Design
The design of this inquiry is exploratory, descriptive, and interpretive. As
presented earlier, van Manen's approach is a melding of the eidetic structure of
33


Husserl and the interpretive school of Heidegger and is used as the guiding
approach.
Strategies. Strategies used included (a) journal writing; (b) audio-tape
recorded interviews; and (c) field notes.
Permission. Permission to conduct the research was obtained from the
University of Colorado at Denver Human Research Committee (at the time located
in the Office of Sponsored Programs) before the interviews were conducted (See
Appendix A.).
Setting. The setting is a federally designated community health center for
the medically underserved in Boulder County. The rationale for the selection of this
site included a large population of Medicaid patients. In addition, in December
1995, patients in this setting had the opportunity to enroll in Colorado Access, a
managed care program specifically for Medicaid clients. This clinic also has a wide
variety of general family practice primary health care services.
Sampling Process. Volunteer adult participants for the inquiry were
recruited at the time of check-in on a regular visit to the clinic. Purposive, or
convenience sampling is a technique employed by qualitative researchers who seek
out individuals and settings where the processes being studied are the most likely to
occur (Strauss and Corbin, 1990, p. 179). In addition, one of the foundational
concepts of phenomenology is the assumption that each individual's experience is a
34


valid source of data. There is no concern about sample heterogeneity,
representativeness, or comparison (i.e., validity) with other individuals because
intra-personal rather than interpersonal variation and unity are the primary concern.
Nor is there concern about reliability since experience is assumed to be non-
repeatable (Ray, 1994).
Permission to do the research was obtained from the Executive Director of
the Clinic, who delegated the coordination of the project to her Operations Director.
Communication was completed with the Operations Director when patients were
needed to interview. It was at the request of the Operations Director that a
permission form was developed for potential participants. The intent of the form
was to secure permission from the patient to release his or her name and telephone
number to the researcher (See Appendix B).
Participants. Each adult patient who appeared at the check-in desk at the
clinic and who was enrolled in Medicaid was given the opportunity to participate.
Patients who either wished more information about the study or who were interested
in participating were asked to sign a release to allow the clinic to give his or her
name and telephone number to the researcher. Participants were recruited beyond
the number anticipated to achieve redundancy or saturation of data. Redundancy of
themes can be achieved even with small numbers of respondents (Ray, 1990).
35


Redundancy was achieved when no new descriptions about the phenomenon were
heard from the patients. There were fourteen potential participants recruited.
The check-in desk staff member would then forward the names and
telephone numbers to the researcher. The researcher would then telephone each of
the potential participants, explain the study, its purpose, requirements of
participants, and other information contained on the informed consent (See
Appendix C). Opportunities were given to potential participants to ask any
questions, to be offered additional time to consider participation, offered an
opportunity to meet the researcher and ask any additional questions before agreeing
to participate.
There were fourteen potential participants recruited by the clinic staff.
Telephone contact was made with each of these participants until saturation of data
was achieved. One declined to participate in the study after further consideration.
One potential participant did not respond to voice mails left at her home telephone
number. Interviews were conducted with six participants (See Table 2). One
interview was a mother with her adult developmentally disabled daughter. The
mother provided the majority of the content for the interview although her daughter
was present for portions of the interview. Interviews were most often done in the
participant's home. One interview conducted was in a conference room in the public
36


library. In some instances, initial meetings were held with the participants and a
follow-up session was held to accomplish the actual interview.
During the initial meeting with the potential participant, introductions were
accomplished, an overview of the research and the researcher's background were
presented, and an opportunity for (a) questions, (b) time for further consideration,
and/or (c) audiotaped interviews were begun. In the instances where there was a
request for time for further consideration, a follow-up appointment was made. The
researchers telephone number with voice mail was provided to each participant.
Table 2 Pseudonyms and Information Regarding Participants
Name Sex Age Medicaid Program
Joanne Fe 60 Mother of adult developmentally
Sandra Fe 37 disabled daughter interviewed
Shirley Fe 47 AFDC, 2 children
Amy Fe 28 AFDC, 2 children -
Susan Fe 25 AFDC, 1 child
Lisa Fe 28 AFDC, 1 child
Data collection and preparation. Before the interviews were conducted,
informed consent was received from each of the participants. This was the last step
in the pre-interview discussion.
37


Interviews lasted from 1 1/2-2 hours each. Each was audiotaped. The tapes
were given to a professional transcriptionist for transcription. Transcripts were then
compared with the audiotape by the researcher. Transcripts were completed on 8
1/2 X 11" paper with 2 1/2" margins on the right to facilitate analysis. Participants
were identified by pseudonyms. The narrator/researcher was identified with Narr.
For a sample transcript, see Example 1.
Example 1. Sample transcript excerpt for Amy
Narr: Do you have any idea of how long it took?
Amy: It took a long time because there was a lot of doctors that were filled and wouldn't accept any new or Medicaid patients. And so that was kind of hard.
Narr: Hard in what way?
Amy: To try to find somebody that would accepL..It wasn't hard for me to find for Sally (daughter) at that time, because Dr. Brown, he was pretty much open. He doesn't turn away a whole lot of children. But for me to find my doctor was a lot harder than for me to find Ruthies doctor. And I just, you know, there's a lot of doctors that didn't want to accept Medicaid patients. So when I found the doctor that I found, it was like, whew!
Narr: Finally.
Amy: Yes, exactly.
38


Ethical Concerns
Permission to Conduct Research
Permission was granted by the Executive Director of the clinic to conduct
the inquiry. A copy of the research proposal was given to her with a meeting to
discuss the inquiry, its purposes, and a willingness to share the outcomes.
The Human Subjects Review Committee at the University of Colorado at
Denver approved the conduction of this inquiry. Approval of this committee is
found in Appendix A.
Protection of Human Subjects
Participation in the inquiry was voluntary. Each potential participant was
informed of the purpose of the inquiry, given an opportunity to consider his or her
participation and to ask questions. Full disclosure of the research process including
the ability of the participant to withdraw his or her participation at any time was
explicated. Dissemination of the findings was also discussed.
Participants were advised that the interviews would be audiotaped and that
the interviewer would also take field notes. They were also informed that the tapes
would remain confidential and that their anonymity would be protected. The name
of the facility in which the research was conducted also remained anonymous.
Because of the sensitivity of the information shared with the researcher, special care
39


was given to each participant to ensure that access to health care and the health care
received would not be affected in any way by participating in this inquiry.
This researcher has worked as a primary health care nurse practitioner in this
clinic. She had ceased clinical work with patients approximately four months before
actual participant recruitment began and will not provide health care services with
patients until after the research is completed. This information was reviewed with
clients verbally. No client interviewed was a patient who had seen the researcher for
primary health care services.
In addition, each participant was asked to sign a consent form (See Appendix
C). A copy of the consent form and an abstract of the inquiry was provided to each
participant.
40


CHAPTER 3
LITERATURE REVIEW
This chapter provides an overview of the literature of the major concepts and
subjects that have importance to this area of research. There are several bodies of
literature that lend clarity to this inquiry. Included are: information on the statute
and subsequent regulations for Medicaid, ethics, the social distribution of illness,
access to health care as a mechanism of social control and values, and the political
economy of health care.
A review of the adjective literature will be accomplished as
part of the on-going data analysis (See Chapter S). Strauss and
Corbin (1990) discuss the use of prior knowledge or technical
literature as
rather than testing the relationships among variables, we want to
discover relevant categories and the relationships among them; to put
together categories in new, rather than standard ways. So, if you
begin with a list of already identified variables (categories), they
may--and are indeed very likely toget in the way of discovery...you
want to explain phenomena in light of the theoretical framework that
evolves during the research itself; thus, you do not want to be
constrained by having to adhere to a previously developed theory that
may or may not apply to the area under investigation (1990,49).
41


This view of the preliminary review of literature is controversial in
phenomenological research, van Manen, whose methodology will be used for this
inquiry, describes this dilemma as
...the problem is that our "common sense" pre-understandings, our
suppositions, assumptions, and the existing bodies of scientific
knowledge, predispose us to interpret the nature of the phenomenon
before we have even come to grips with the significance of the
phenomenological question...It is better to make explicit our
understandings, beliefs, biases, assumptions, presuppositions, and
theories (van Manen, 1990, p. 46,47).
Medicaid
Since its implementation in 1965, Medicaid has become the only access to
health care services for millions of Americans. The policy was originally intended
to provide access for America's poor. Currently, eligibility is determined by
individual states and consequently varies widely, with the average state limit being
45.3 percent of the federal poverty level and the maximum at 200 percent (GAO
1992). In addition, many states also tie eligibility to Aid to Families with Dependent
Children (AFDC), which further limits the eligibility of single persons and childless
couples.
In August 1996, the Personal Responsibility and Work Opportunity
Reconciliation Act of 1996 was signed into law (P.L. 104-193). This is a
42


comprehensive welfare reform plan designed to change dramatically the nation's
welfare system. There was special provision for increased funding for child care
and guaranteed medical coverage. As part of the promotion of responsibility, each
state must operate a child support enforcement program to be eligible for Temporary
Assistance to Needy Families (TANF) block grants. This new law also preserves
the national guarantee of health care for poor children, the disabled, pregnant
women, the elderly, and persons on welfare. The impact on the individual recipient
is, as yet, uncertain.
Medicaid provides health care insurance for about 26 million poor, disabled,
and elderly Americans. Medicaid is funded by federal grants, state dollars, and
administered by the states. Nationally, it accounted for the second largest state
spending category in fiscal 1990. About 70 percent of the funds are spent on health
care services for the elderly, blind, and disabled. Mothers and dependent children
constitute about three-quarters of the Medicaid recipients, but account for only one-
quarter of the expenditures (Wilensky, 1991).
In Colorado, for example, for a family of four receiving AFDC, the
maximum annual income allowed in 1993 was $14,763 (Colorado Department of
Social Services, 1995, p. 15). This program covers only one-third of those
uninsured (251,590 in SFY 93-94) in Colorado's population, although some
43


projections estimate coverage to range between 12% and 18% of its uninsured
(Colorado Department of Social Services 1995).
Health care benefits typically include inpatient services, outpatient services,
laboratory, x-ray, skilled nursing facilities, home health, physicians, and family
planning. There are also some services that may be provided (determined by the
individual states) including drugs, eyeglasses, inpatient psychiatric services, and
dental services. The 1990 Budget Reconciliation Act additionally requires:
eligibility for one year for all infants bom to Medicaid-eligible women; an existing
program that helps certain poor elderly individuals pay for Part B Medicare; a new
optional program to provide home care for frail and disabled senior citizens; and
state Medicaid programs to finance community-based living arrangements for the
mentally retarded (Wilensky 1991).
Despite its crucial role in serving society's most vulnerable members,
Medicaid is under attack by the Congress for (a) failing to provide an adequate
safety net, (b) inadequate service to its beneficiaries, and most importantly (c)
straining state and federal treasuries at the expense of taxpayers and other critical
social needs (Kaiser Commission 1991).
Perhaps most troubling for the individual is that once a Medicaid application
is completed and a Medicaid card is received, the elaborate "mandated program on
paper" may or may not be found. Many beneficiaries cannot find doctors, dentists.
44


or other health care providers to care for them. There are many reasons for this
deficit, especially a growing differential in payment between Medicare and
Medicaid, which prompts providers to limit the number of Medicaid-funded patients
they will accept
Ethics
Ethics is a generic term used for several ways of examining the moral life
(Beauchamp and Childress 1989). Descriptive ethics is a non-normative approach
that attempts to establish what is factually or conceptually the case. For example,
how are certain ethical principles operationalized by current federal and state
policies regarding Medicaid? Or, conversely, what ethical standards are neglected?
Four ethical principles will be considered during the course of this study:
autonomy, nonmaleficence, beneficence, and justice. These principles are
operationally defined in the following manner.
Autonomy
Autonomy occurs when persons fully or substantially have the capacity for
self-governance, have a coherent and stable set of principles that freely govern
actions, and view themselves as capable of carrying out autonomous actions (Silva
1990). Faden and Beauchamp (1986) further identify autonomous actions occurring
45


only if a person fully or substantially acts with intention, with understanding, and
without controlling influences or coercion.
Nonmaleficence/Beneficence
These two principles are inter-twined in meaning and operation. The
commonly held definition of nonmaleficence within health care is: Primum non
nocere or "Above all (or first) do no harm." While the statement is often attributed
to the Hippocratic Oath, it is not found within that document, but apparently was
authored by Hippocrates (Jones 1923, p. 165).
Traditionally, the principle of beneficence suggests acts of mercy, kindness,
and charity. In health care, there is an implicit obligation to balance the possible
goods against the possible harms of a particular action or service. This merging of
nonmaleficence and beneficence is supported by Frankena and others, through the
notion that the concept and obligation of beneficence in health care. This concept
also includes an assumption that promoting the welfare of patients, not merely the
avoidance of harm, is the expectation of the health care community (1973).
Justice
Justice, in philosophic terms, is most often associated with "what is morally
right" or "giving to each his due" (Rawls 1971). Distributive justice is an attempt to
establish a connection between the morally correct distribution of benefits and
46


burdens in society (Beauchamp and Childress 1989). In health care, this might be
operationalized as "Who should gain access to health care and who should bear the
cost?" Valid material principles of distributive justice have been proposed,
including to each person an equal share, to each person according to need, to each
person according to effort, to each person according to contribution, to each person
according to merit, and to each person according to free-market exchange (Rescher
1966).
Access to Health Care
Access to health care in the United States is a reflection of the economic and
political allocation of limited resources. At the root of this distribution, however, is
an argument steeped in values and ethical issues.
Over the past century, the central valuative question has primarily been,
"Should government be involved in the allocation and distribution of health care
resources?" During much of the last century,'public and voluntary not-for-profit
hospitals and health care systems provided a safety net for the poor and uninsured.
From an economic perspective, however, regulatory control is commonly initiated at
the point of market failure or when the free market does not allocate resources
efficiently to all who need access. As health care costs have dramatically escalated,
even basic health care services become unreachable for many. One could easily
47


argue that Colorado's currently uninsured 514,000 citizens (15% of the population)
and another nearly equal portion of underinsured citizens (438,000 or 13% of the
population) in the current oligopolistic market represent market failure, and many do
(Colorado Trust 1992). That is, close to a million residents are susceptible to being
members of Colorado's medically indigent, many for reasons beyond their control.
From an ethical perspective, health care access becomes more difficult. How
do we determine society's obligation to individual health care needs? Where does
health care fit in the priorities of many social needs? What kind of return on
investment should society expect for its investment in the education of health care
professionals and biomedical research monies?
Callahan (1990) and others have argued that achieving an adequate level of
societal health should take precedence over individual curative needs. In fact, many
of the historical successes in health care have been the result of public health,
population-focused initiatives such as sanitation, nutrition, water treatment, and
immunization programs.
Yet more recently, the health care system has focused on highly
technological interventions such as intensive care units, organ transplantation,
trauma services, and infertility procedures that have radically escalated health care
costs and simultaneously have turned the spotlight on individual curative needs.
How do we balance the allocation of high technology (which generally translates
48


into high cost) interventions that have been developed with public monies with
societal health and individual curative needs?
Medical Sociology
Medical sociology studies how people define themselves as sick as
well as the ways they use to avoid feeling that something is wrong
with them. It also studies the means a society has developed to
reassure people that they will get better, as well as the ways to obtain
cure or relief from pain or disability. Medical sociology deals with
social responses and the management of emotional defenses in the
presence of disease; it deals with the social arrangements,
institutions, and occupations societies develop to deal with disease
and the threat of it (Mumford 1983).
Medical sociologists have made significant contributions to the literature on
access to care and the relationship of demographics and socio-economic status to
access, utilization, and quality of health care services. There is, however, no
phenomenologically-based research with Medicaid clients reported.
Social Distribution of Illness
Disease is not evenly distributed throughout the population. In the United
States, one of the most striking and consistent patterns in the distribution of disease
is its intimate relationship to poverty. By and large, death and disease rates vary
inversely with social class; that is, the poorer the population, the higher the risk for
morbidity and mortality (Kitagawa and Hauser 1973).
49


While it has been long known that poor people suffer more disease than
others, just how poverty influences health is not yet well understood. Syme and
Berkman (1986) explored the relationship between social class and sickness,
reviewing the evidence of the influence of stress, living conditions, and nutrition, as
well as access to the more traditional forms of medical services on the patterns of
death and disease among the poor. They particularly focused on how the living
conditions of the lower class may compromise "disease defense systems" and
engender greater vulnerability to disease.
Furthermore, there have been recent empirical studies reported in the
literature indicating that both uninsured patients, as well as those covered by
Medicaid, presented for health care with more advanced disease than did those
patients with private insurance. The poorer patients also had poorer survival rates.
In addition, hospitalized patients with lower socioeconomic status have longer
inpatient stays and require more resources, although costly procedures such as total
joint replacements or coronary artery bypass grafts were more often performed on
patients who had private insurance (Ayanian, et al., 1993, p. 326; Epstein, et al.,
1990, p. 1122; Hadley, et al., 1991, p. 374; Young and Cohen, 1991, pp. 255-62).
50


Political Economy
The political economy of health care services has been aptly described by
Wildavsky as "Doing better and feeling worse: the political pathology of health
policy." We currently support a system in which the "Great Equation, Medical Care
equals Health." He also points out that the Great Equation is wrong (Wildavsky
1992, p. 284).
Currently, a clear majority of our health care resources and activities are
devoted to what are termed "downstream endeavors," or the "cure" form of care
(e.g., coronary by-pass surgery, organ transplantation, joint replacements). These
activities address immediate and short-term needs of individuals and groups. They
are also financially supported by a variety of special interest groups and constituents
of legislators. As a result of these successful "downstream endeavors," we have
created an older population whose health care problems are more complex and
difficult to cure. Some have observed that we need to shift our thinking to more of
an "upstream" model where the real problems begin (Ardell, 1977, p. 6). In this
reorientation, the notions of preventive health care services, housing, nutrition, work
education, and mental health services might prove more useful, and more productive
in the long run, than our current "downstream," high-tech efforts.
51


This brief literature review contained highlights that have potential
implications in the discovery of the lived experience of Medicaid clients. For
example, it is helpful to have a general understanding of the purposes of the
Medicaid program and the social distribution of illness in order to have a context in
listening to the story of a Medicaid client. Other pertinent literature will be
reviewed as part of the data analysis in Chapter 5.


CHAPTER 4
THEMATIC ANALYSIS:
AN UNCERTAIN JOURNEY
Through the use of narrative and reflection, the stories of the patients unfold.
The stories are presented as portraits of their world and the many landscapes of
being in the world. Their views require an active exploration to capture the many
facets and changes within their world.
An Uncertain Journey is a metaphor for these Medicaid patients, as it is
reflected within their stories. These patients come to know using health care
services as an uncertain journey one of difficulty in finding the right access, the
safest path, and encountering many barriers along the way. The individual patients
revealed the landscapes as themes embedded within their experience along the
journey. These patients continually make choices and learn ways of self-advocacy
along the path.
Wittgenstein (1958) illustrates this sense of journey and the metaphors of
landscape in the preface of his Philosophical Investigations.
For this compels us to travel over a wide field, criss-cross, and in
every direction. The remarks are...as it were a number of sketches of
landscapes which were made in the course of these long and involved
journeys. The same or almost the same points were always being
approached from different directions and new sketches made (p. v).
S3


Patients traveling an uncertain journey sometimes go long distances, re-trace
paths and approach from a new direction, and find patterns within their lives that
might be considered as landscapes along the journey.
The initial part of this chapter presents Joanne's and Sandra's story as an
exemplar for the use of story as a way of revealing the patient's experience. This
story was reconstituted from their stories obtained during the interview process. The
remaining patients' stories are found in Appendix D. Descriptive themes were
derived from each individual story and their meaning was linguistically transformed
into the metathemes found later in this chapter.
The patterns within these patients' lives emerged from the interviews. Each
story has its own landscape, texture, and feeling. It is through the stories that we can
become aware of the personal events that create meaning within the lives of these
patients and their experiences in the health care system that was nominally designed
for their use. The stories reach to uncover the individual patient's meaning in the
Uncertain Journey for health care. The journey begins with the story of Joanne and
Sandra. Again, the stories of the other patients are found in Appendix D.
Joanne's and Sandras Story
Joanne is a mother, wife, and professional woman about sixty years of age
preparing for her later years and retirement Thirty-seven years ago she gave birth to
54


a daughter, Sandra, who was diagnosed as developmentally disabled (known as
severely mentally retarded at that time) at three years of age. hi the face of differing
recommendations from their family physicians, Joanne and her husband Tom
decided to keep Sandra within their family as opposed to institutionalizing her as
was common practice at that time. Sandra's story is told, necessarily, by her mother,
Joanne.
Until she was 22, Sandra was part of the family in the way other children are
considered family members. Sandra has one older sister who is now married and
living in Boulder County. She attended school and was trained in a sheltered
workshop environment Continuing to support a normal environment for Sandra,
Joanne and Tom decided on a group home residential care facility and Sandra
moved to Northern Colorado to begin her life as an adult
Sandra's health care during her growing up years was under the care of a
private pediatrician in Boulder and was financed through private health insurance.
Dr. Benson was "always very caring, very interested in her well-being, always
making her feel comfortable before he did any examination or anything with her."
He wanted to care for her as long as he could and did, in fact care for her until she
moved away. This care was provided long after the time a pediatrician would have
normally transferred her care to a primary care provider who would care for adults,
but with her profound developmental disability, he recognized the importance of a
55


stable, continuous and caring health care relationship. Joanne describes Sandra as
"incapable of so many things that we've had to make all the decisions for her. It's
always good to have a doctor that cares for her, too."
Sandra's first encounter with Medicaid was at the transition into adulthood.
Her care was provided by a primary care provider in Larimer County only on an
annual basis and occurred when the residential care provider scheduled
appointments. Sandra is unable to communicate when she doesn't feel well or is
sick.
In Larimer County, Sandra initially lived in a 28-bed group home and was in
a sheltered workshop-type program doing minimally skilled jobs. Because of
changes in streamlining community-based programs for these special people, Sandra
was later transferred to three different homes. Her last group home was a 4-bed
facility in which she lived for 8 years and was physically abused there about 2 years
ago.
Joanne relates a story and horror of discovering her injured daughter when
she and Tom drove to Larimer County to pick her up for the Easter weekend. They
found Sandra bruised from her knees to her waist, her eyes were black and blue, and
both arms were bruised. The care provider in the home told them her condition was
one entirely resulting from self-abuse. Later, the care provider acknowledged
another person's involvement Sandra had lived in this home for eight years.
56


Joanne and Tom took her to her primary care provider in Larimer County.
He never touched Sandra during the entire course of the visit. In fact, he just barely
stepped inside the door [of the exam room]. He was obviously more interested in
the proceeds than they rsicl were our daughter.
When Social Services was unable to provide a new placement for Sandra in
three days, Joanne and Tom took Sandra back home with them to Boulder County,
refusing to return her to the group home. Sandra, as is common with adult children,
had not lived at home with her parents for fifteen years.
Joanne describes Sandra as very stable and physically strong and healthy
until the point of her abuse, but she has had an extremely difficulty time coming
through the emotional passage of the trauma. Joanne describes Sandra's limited
vocabulary as 4-5 word sentences, but most often it's just a single word. Since she
was abused, "she acts out with her actions, of self-abuse, of trying to defend herself
because she feels very defeated in regards to that."
- Never having worked with Medicaid herself and unaware of the journey that
lay ahead, Joanne called other group home providers to get referrals in Boulder
County. Without fail, she discovered that the only health care providers taking
developmentally disabled Medicaid patients was the Clinic. The Clinic took her
immediately, but getting subspecialty referrals was another rock in the road.
57


Joanne relays a story of having found an eye doctor who would take
Medicaid. Getting Sandra ready emotionally for a doctor's appointment was not an
easy task. It took much gentle explanation and support Before they arrived for
their appointment Sandra's Medicaid enrollment had been changed to Colorado
Access [a Medicaid managed care program] without Joanne's knowledge or
awareness of even what Colorado Access was. The opthamologist refused to see
her-even with Joanne's offer to pay cash for the visit
When Joanne went to pick up Sandra's medication from the pharmacy, her
prescriptions could not be filled because of her new Access card and the name of the
original prescribing physician not participating. It was a full week before that
situation could be setded. The pharmacist gave Joanne a "few pills" until the change
for her new physician and the medications could be approved.
Joanne is a caring and sensitive parent Because of her daughter's fears, she
scheduled an appointment with her new physician at the Clinic, just to introduce her
to the person and the environment Then she set an appointment for a physical.
"The doctor did a beautiful job in handling her on a comfortable level. He got to her
level so she could respond to him. It was a very good experience. I was very
pleased."
Sandra's psychiatric referral is an untold journey and story. Her preliminary
visit has been completed. Her first real appointment is in a week. Sandra's been
58


here almost six months. It's taken this long for a developmentally disabled woman
who has been abused to be seen and to begin treatment
The Department of Institutions recommended a neurological consult in
January of 1995. No neurologist in Larimer County would see her. Sandra finally
has a referral now, eighteen-months later.
She was put on psychotropic medications for her self-abuse in March 1995.
There have been no improvements, few changes in medications, and in fact one
medication worsened her symptoms. Sandra has had to suffer and struggle with
these delays that would most probably not have occurred in the private sector.
During the last year Sandra was in the group home, she underwent an
abdominal hysterectomy. Joanne was in attendance 24-hours a day and slept in a
chair in Sandra's hospital room. She was discharged from the hospital in three days
with sutures still in place and on pain medication. Joanne worries about what might
have happened to her if she did not have parents who were willing to take her and
care for her. The group home was "very, very clear they had no one to take care of
her." Sandra could not understand what had happened and why she was in pain.
Joanne tells a story of needing to be ever-vigilant about her daughter's care
and is very concerned about what might happen to Sandra after she and Tom have
died. They have made the necessary legal arrangements. Their older daughter will
be Sandra's guardian.
59


Joanne believes that
Our special needs people are not being provided with the kind of care
that they should have_Sandra gets second class or rejected health
care. Not completely, there are doctors_that will do it individually,
but the overall care, it's like almost begging someone to see someone
who is ill. Ah, not having anywhere to go, it's such an empty, empty
feeling...it's also very emotionally, very heart wrenching, a lot of
times to know that you feel that you're being punished because you
have a developmentally disabled person...her life is just as important
as my other daughters. It's real hard to put it in words because you
can be real harsh, you can be bitter, but you have to take it as it
comes, but you always wish it would be different That's our hope
that she can have a happy home, that she can be cared for in the
manner that is pleasing to her and us.
An Uncertain Journey
Early in the reading of patient interviews, the metaphor of the Uncertain
Journey was revealed through multiple readings of the interviews and stories.
Patients describe the uncertainty of the journey and the search for health care as a
Medicaid client In connection with this journey are the concepts of choice and
having alternatives, illness and suffering, the new dimension of time, and the
relationships with health care providers.
Maureen Murdock's "The Road of Trials" in The Heroine's Journey (1990,
pp. 46-48) also reveals a description of an uncertain journey with the similar themes
of choice, suffering, and relationships.
60


Confronting Ogres and Dragons
The heroine crosses the threshold, leaves the safety of her parent's
home, and goes in search of her self. She journeys up hills and down
valleys, wades in rivers and streams, crosses dry deserts and dark
forests, and enters the labyrinth to find what is at the center of her
self. Along the way she meets ogres who trick her into going down
dead ends, adversaries who challenge her cunning and resolve, and
obstacles which she must avoid, circumscribe, or overcome. She
needs a lamp, a lot of thread, and all of her wits about her to make
this journey...
The most challenging dragon of all, however, is the societal reptile
that smiles and says, "Yes dear, you can do anything you want to do,"
while continuing to sabotage her progress with few opportunities,
low salaries, inadequate child care, and slow promotions. What this
dragon means is, "Yes, dear, you can do anything you want to do as
long as you do what we want you to do..."
The litany goes on and serves to undermine her clarity, self-
confidence, ambition, and self-worth. The dragons that jealously
guard the myth of dependency, the myth of female inferiority, and the
myth of romantic love a fearsome opponents. This is not a journey
for cowards; it takes enormous courage to plumb one's depths.
"The Road of Trials" captures the essence of the uncertain journey for the
patients with Medicaid. Silverman (1984) elaborates on the interpretation of "road"
and says that the interpretation may occur in a myriad of ways. It can occur literally
as a selection of one of two paths, allegorically as a choice in the face of
alternatives, or morally .as a lesson that one chooses.
61


This particular group of patients were all women. Each of them struggled
along the journey with a choice of paths, a selection of alternatives, and morally
with her sense of self, autonomy, justice, and liberty imbedded within the
relationships with Social Services, the health care system, and some of the health
care providers.
The padents talk of choices they have had to make along their journey.
Some of the choices are extremely difficult to make and they understand that there is
sometimes serious compromise as a result of the selection. As Lisa reflected about
an encounter with one provider, she talks about the personal cost.
I didn't feel like a person. I felt like a non-person. Truly, because I
was on Medicaid...I had lost my rights to make decisions for myself
and to have a say about the care I got Humiliating would be a good
word.
What I honestly walked away from that feeling was the attitude was,
you are the Medicaid patient and a poor person. I am the doctor and
because you're who you are and you're on Medicaid, I get to tell you
what to do and treat you a certain way. It doesn't have to be how I
deal with my other patients.
Being a Medicaid patient is an uncertain journey. The themes and
metathemes that emerged from these patient's stories reflect their personal courage
in the search for health care.
62


Metathemes and Themes
Exploration of the individual's experience of accessing and using health care
services will illuminate the metathemes and themes central to this experience for
this group of patients. The narrative follows a pattern of presentation: actual
excerpts introduce the perspectives of the patient, followed by an interpretive
perspective from the researchers dialogue with other sources including research and
literature. Each metatheme is introduced with a heading and the related themes are
identified with sub-headings. The "Beginning Reflection" is a descriptive meaning
of the experience from the patient's perspective and provides a way of thinking
about Medicaid and health care that brings forth thematic structures that remain
open to thought. The "Second Reflection" reveals a deeper understanding of these
themes through a dialogue with other literary sources, reflection, and writing, van
Manen discusses themes as "a way to simplify; as the experience of focus, of
meaning, of point; or a form of capturing the phenomena one tries to understand"
(van Manen, 1990, p.87). He also identifies four lifeworld existentials that serve as
guides to reflection during the exploration of thematic structure. These include:
lived space (spatiality), lived body (corporeality), lived time (temporality), and lived
human relation (relationality or communality) (van Manen, 1990, p. 101).
Five metathemes were linguistically derived through deep reflection with
each of the patient's stories. Each metatheme transforms the detailed descriptions of
63


lived experience into a pattern, a view, or a landscape along the journey (see Table
3).
Table 3 Metathemes
Spatially Standing in the Second Line for Health Care
Embodiment Choosing to Risk
Temporality Waiting for Health Care
Rationality A Compromise to Autonomy and Liberty
Self-Advocacy Creating Hope
The whole of the lived experience described in the narrative of the patients
expresses the unity of meaning as Power and ControlCounterbalance to Moral
Responsibility and Boundaries of Community. The unity of meaning will be
explored in the next chapter.
Metatheme I: Spatialitv: Standing in the Second Line for Health Care
Table 4
Thematic Structure of Spatiality: Standing in the Second Line for Health Care
Differences in Service____________*_______________________________________
Attitudes_________________________________________________________________
Giving Up
Beginning Reflection: Standing in the Second Line
I said I don't care that he treats rich people differently...and that was
very obvious in the office. They had 2 check-in lines. They had one
check-in line for regular patients and one for Medicaid patients
(Lisa).
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Differences in Service
The differences in service are described by each of the patients who
participated. Joanne said, "...they take her as a commodity, instead of a
patient..Sandra gets second class. It always makes you feel like you're getting
rejected health care."
Each of these patients has experienced health care outside of the Medicaid
systemwithin the private sector. Shirley remembers.
I was used to good care. I was always able to work and have private
care. Basically the medical care you had was a lot to choose from
and you know, very progressive.
Amy describes that when she received care in a private physicians office, the
patients in the office seemed reflective of society at large. When she describes the
clinic she goes to as a Medicaid patient, she says
It's okay looks wise, you know, the appearance. But the kind of
people that go there areYou can tell that they're a little bit poor
compared to the offices that I went to before where you can see that
it's not just all poor people.
The paperwork, processes, and red tape were also frequently noted as being
different when one is a Medicaid patient Lisa shares her story.
65


They wouldn't see you unless you had your card on you and would
send you home if you didn't have it I understand the rule is bring a
copy of your card with you, but when you're sick and its several
times a week, it's easy to forget to bring it with youespecially when
you know they have a photocopy in your file.
Differences between Medicaid and the private sector were described by
patients as difficult to deal with and one of the things that needed to be changed
about the system.
Attitudes
For these patients, life as a Medicaid patient is inherently riddled with the
confrontation of negative attitudes from many different sources. Administrators,
providers, and self are all sources of negative messages.
Shirley tells her story.
At first I thought it was my imagination that I was getting treated
rudely and then, one time when I was in the office, the receptionist
was hassling me about Medicaid. It was just a matter of it was a put-
off for hershe had to fill out extra forms. It was very annoying, but
I do remember saying, you know I haven't always been on this and I
won't always be on this..I told the doctor and he reprimanded her. I
was being treated badly.
Lisa shares an experience with a physician from whom she received a
surgical procedure.
66


What I honestly walked away from that feeling was the attitude was,
you are the Medicaid patient and a poor person. I am the doctor and
because you're who you are and you're on Medicaid, I get to tell you
what to do and get to treat you a certain way. It doesn't have to be
how I deal with my other patients.
Joanne's encounters with attitudes in getting health care for her daughter
Sandra are illustrated with the difficulty in getting a psychiatric evaluation for her.
It took us two months just to get her in to a psychiatrist in the county.
Through Medicaid, by begging and pleading there was only one
psychiatrist that will see her in all of Boulder County.. .It's like almost
begging to see someone who is ill. Not having anywhere to go, it's
such an empty, empty feeling.
Susan remembers the application process.
You have to talk to this person, and papers have to go to this person.
You filled it all out, you went there, and they say OK, here's a
caseworker, make an appointment, come back, and you
know...Sometimes they're not very nice...because they're
working...and the situation. I guess I'd feel like, well, geez, maybe I
shouldn't be here. Is it really worth it, you know. But of course it
helps because you want to take care of yourself and you want your
children to have insurance.
Amy talks about her own internalized attitude.
...there is somewhat of a stigma I guess. It's like a feeling of, when
you go there...Maybe it's just within myself. Well, I'm first
generation welfare right now, and I'm planning not to be on it when I
finish my college education. So maybe that comes from...my own
internal...the way I was raised.
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Giving Up
One of the themes that came through reflection on the interviews was the
concept of "giving up." Shirley talked about the process of accessing health care
when she was six months pregnant.
It was very difficult, you know, because I was going through a lot of
stress, you know, with the separation, and being pregnant, I was more
emotional. And also because in order to get the help I needed I had
to give up almost everything I had. We were homesteading and so I
had to quitclaim my half of the property which means I just lost
everything. In order to access the health care I had to give everything
up.
Shirley ended up getting housing assistancebut not until her son was 4 or 5
months old. She talks about the period between giving up her home and receiving
housing assistance as "...it was really difficult It was really hard..."
Second Reflection
Spatiality: Standing in the Second Line for Healthcare
Unjust social arrangements are themselves a kind of extortion, even
violence (Rawls, 1971).
How is spaciality reflected in the lives of patients who have Medicaid? van
Manen talks about spatiality as "felt space" and further describes that lived space
"affects the way we feel" (van Manen, 1990, p. 102). One's home is an easily-
identifiable example of lived space. Our homes are generally considered "havens"
68


where we can retreat. Bollnow describes home as a place of security and inner
sanctity (Bollnow, 1960). As referenced earlier in this chapter in "Confronting
Ogres and Dragons," the parent's home represents safety and security. Most of us
have favorite "spots" in our homes to do particular activities that contribute to the
enjoyment or the meaning of the activity, such as a favorite chair in which to read or
a particular place in which to store our treasures.
Heidegger, in his discussion of space, says that the
Greeks had no word for space.' This is no accident; for they
experienced the spatial on the basis not of extension but of place;
they experienced it as chora, which signifies neither place nor space
but that which is occupied by what stands there. The place belongs
to the thing itself (Heidegger, 1959, p. 66).
The metatheme of "Standing in the Second Line for Health Care describes a
place in the journey for health care services. The etymology of "second" is mixed;
coming from Old English, French, and Latin. Meanings include; "following; next
to the first in place; next to the first in value or excellence; inferior or subordinate;
or ranking next below the top of a grade" (Webster's, 1963, p. 779).
Walzer argues, in Spheres of Justice, a complex equality in which human
society is a distributive community. He says "People conceive and create goods,
which they then distribute among themselves." He also believes that goods, because
69


of their meanings, are a critical component of social relationships (Walzer, 1994, p.
103).
In a portion of America, Angelou eloquently describes the limitations of
distributive justice.
The gold of her promise has never been mined
Her borders of justice not clearly defined
Her crops of abundance
the fruit and the grain
Have not fed the hungry
nor eased that deep pain
Her proud declarations
are leaves on the wind
(Angelou, 1993, p. 78)
The patients' lived experience of being a Medicaid patient and accessing and
receiving health care services is one in which their individual perceptions of self
were confronted and doubted. The reality of having a "second line" supported and
validated the notions that whomever stood in that line not only received goods that
were-ranking below the top grade," but they, themselves, were also thought of, and
in fact treated, as inferior. That cost was even greater when, as in Shirley's
experience, she had to relinquish her home to access health care.
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Metatheme II: Embodiment: Choosing to Risk
Table 5
Thematic Structure of Embodiment: Choosing to Risk
Pain and Suffering____________________________
Uncertainty of Health Care____________________
Caring
Beginning Reflection: Choosing to Risk
You have to have some understanding of how medicine woiks. Of
how illness works. If I go in and I think I'm going to be treated
horribly, I'm that much worse off right there (Lisa).
Pain and Suffering
The theme of pain and suffering was woven throughout the journeys of each
of the patients. Joanne talks about her daughter
She was physically abused over 2 years ago (in a group home)...and
has had a real problem coming through that emodonally...Since she
was abused, she acts it out with her actions of self-abuse, of trying to
defend herself...so we have had a very, very difficult time...She has to
struggle until we can get her in to something. And if it was you and
I, we wouldn't strugglewe would go right in and see a doctor.
Susan remembers getting care for her son Jason who is five.
Since we moved here, he's had 4 bouts with strep throat and two
times it turned into scarlet fever. He was always getting sick...He had
gone through three different antibiotics and it just wasn't working...
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Shirley, who is allergic to metal dental fillings, had been having her dental
work done with a dentist who did composite fillings and who also accepted
Medicaid patients. The dentist stopped seeing Medicaid patients. She tells her
story.
I did have a discussion with him about his willingness to make
exceptions, and he was not and he did apologize...What I was really
upset about is that it left me in the lurch because there were no other
dentists in the area who would do composites.. J probably let my
dental care go for 2 or 3 years after that..About 3 months ago I get a
toothache and it ends up that one of my composites has leaked and I
need a root canal and a crown or the tooth pulled. I was not happy
because I knew that was a direct result of my not having any dental
care.
Lisa remembers after the birth of her daughter she was not feeling
particularly well. Her view from the point of her journey when she gave birth was a
series of abnormal laboratory results and resuming her menstrual cycles.
For whatever reason, the doctor seemed to be insistent on my using
birth control and I'm allergic to it..He kind of insisted on an IUD. I
told him I wasn't active any more and didn't have to worry about it I
had horrible problems with it and again I tried to switch doctors. I
guess what's really frustrating was, here I was being told what I had
to do, because I am and was then studying biology, so I had some
information that I could made decisions based upon...I felt I had
pretty valid reasons for wanting to switch and have the IUD out. By
the time they did take the IUD out, I had pelvic inflammatory disease
really bad.
Amy is a single mother who gave her newborn child up for adoption.
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Well, it was very difficult for me...You know, your hormones and
just everything I had went through physically and
emotionally...Drained and heart broken. I can't even describe the
words. It feels like somebody takes your heart out and pounds it with
a meat tenderizer and then hands it back to you and says, here...
She has not been seen for her six-week postpartum visit and it has now about
sixteen weeks. There was a letter indicating she needed to come inbut there has
been no call from her provider to inquire about her well-being. The adoption was
planned and was known during her prenatal care.
Uncertainty of Health Care
Lisa has had many encounters with the Medicaid system administrators over
the years. Many of the encounters were the result of dissatisfaction with health care
received by a particular provider and the subsequent request to change health care
providers. Lisa talks about a health care visit with her daughter.
I guess the first 2 experiences that I really had a hard time with...I
took her in for she was running a fever of 105. She always runs high
fevers. The doctor examined her ears and he wrote a prescription.
Wed already gone over what were her allergies at this time. It wasn't
as if he wasn't aware. He prescribed something she was allergic to. I
caught it before I gave it to her. I called the doctor's office back. I
don't know if he'd had a bad day or whether he just wasn't happy
being called on an error, but it wasn't a good experience. It took a lot
to get him to write another prescription. My feeling at the time was if
they're going to forget 15 minutes later that she's allergic to
something and if I hadn't looked at the bottle and read what she was
taking, I would have given it to her.
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I asked [Medicaid] if we could switch doctors for herif they had
different ones. We were told no, you're only allowed one switch a
year. I explained what happened and they said, "No. you can't
switch.
Shirley also is aware of the uncertainty regarding her health care services.
You know the crowdedness is frustrating. I was really appalled the
first time I had an emergency need and couldn't get an emergency
slot The clinic is so crowded that I've had to go the emergency
hospital here more times than I can count If you dont call them very
early, you probably won't get an appointment or you'll have to sit
there all day and wait until somebody doesn't show.
Amy has been a Medicaid patient in a private practice in another part of the
state. She was very pleased with the care she received there. When she moved to
Boulder County, she was pregnant and began her prenatal care in a community
health center. She was in the hospital for a complication of her pregnancy.
The doctor was supposed to come in that morning when I was in the
hospital and just called to see how I was doing. He just talked to the
nurse and never showed up. He sent me home. I came home just as
miserable as I was when I was there. Sick, sick, sick...
Lisa also remembers a period when after some abnormal PAP smears, she
was scheduled for a cervical biopsy by her gynecologist.
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I showed up for the appointment where they were supposed to do that
and the nurse handed me a piece of paper and said, "Read this after
your treatment, after you're dressed." The instructions were to read it
afterwards. So I looked at the pieces of paper and it said,
"Congratulations, you have been the recipient of loop electrosurgical
incision procedure." The paper described the procedure and what it
was, that it was a new procedure that had only been in the States for a
year. I didn't change. When Dr. Brown came back to examine me,
he said, "What are you doing? You're supposed to be changed." I
said I have some questions and my understanding was I was here for
a biopsy. This is not what this says....And instead of answering my
questions, he got mad and told me, "I have an outpatient surgery
procedure scheduled every 15 minutes. You have thrown my
schedule off. If you want this procedure done, you're going to have
to re-schedule it."
Each of the patients talked about what it was like to find a provider.
Joanne talks about her developmentally disabled daughter who needed to be
evaluated by a neurologist and was given a referral in January 1995. In late 1996,
Sandra had still not had the neurological consult because there were no neurologists
in all of Larimer County who would see her.
Shirley had a referral to an opthamologist for her son to have an eye exam.
He was given a prescription for eye glasses. There was no Colorado Access
approved optician in Boulder.
And so I call them [Colorado Access] and they say well they think I
can go to Commerce City and I explain to them, no actually I
cannot..not only will my car not take me that far (> 30 miles), but I
can't take the bus because of my back disability...They apologize and
they said call people in the phone book...If I could find somebody
who would be willing to take an order number from them, an
approval number, then they would use that person....
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It took at least a dozen telephone calls before Shirley found an optician who
would take the approval number. The optician gave her son only one pair of frames
from which to select
It was one or two weeks...it was a long time to get an optician for my
son. And I was tired, I was grouchy and I was angry and it affected
my everyday life for that period of time, you know. So that kind of
strapped, it made it hard for me to do my day to day chores, I'm
spending 2 and 3 hours a day on the phone when you start looking in
the yellow pages...
Amy remembers finding her first provider who would accept her as a
Medicaid client
For me to find my doctor was a lot harder than for me to find Sally's
doctor. And I just you know, there's a lot of doctors that didn't want
to accept Medicaid patients. So, when I found the doctor that I
found, it was like, "Whew!"
Caring
Each of the patients was also very quick to remember people and providers
in their journeys who treated them with caring, regard, and respect These people
and situations were landmarks along the way and stood out from the routine health
care services they received as Medicaid clients.
Amy remembers her primary care provider in Larimer County.
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And that was one of the things that was really nice...she came to the
hospital when I had the baby even though I was under the care of the
gynecology officethe women's clinic...She came to the hospital
because of her being my primary care physician. And she just, you
know, checked on me and held the baby that I was going to give up
for adoption...So she came in and was very compassionate and
understanding.
For Lisa and her family, their positive remembrance of caring was with their
PCP on the Western Slope of Colorado.
He explained things, was real cooperative. There was no separate
line...they asked, just discretely if you had your Medicaid card with
you today. If I didn't hand it to them directly when I signed in, they
would ask but wait until I was in the exam room.
They worked with us, worked with my school schedule. He really
took the time to sit and explain to us why the procedure would be
beneficial and gave us time to think it over and decide. It wasn't
presented as "This is the course of action you should take of must
take.
Shirley describes her current care as a comparison of private care she has
received in the past
First let me be real clear that I've been in private care before that has
not been a 10, so they're not synonymous OK?...I'd say I'm getting
between an 8 and a 9,1 am very happy with the Clinic...the nurse
practitioners are wonderful...The receptionist knows me by name the
minute I walk through the door...I'm very impressed...
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[Colorado Access] they're easier to get a hold of than Medicaid
was...They do have a local number and a toll free number and they do
have people that answer timely and get back to you. And I've had
them call me back with information, like within an hour....
Joanne remembers taking her daughter to the clinic for her first visit
[Im] very, very pleased with they way they are taking care of Sandra.
I originally just took her in for an introduction so that she could get to
know the doctor and the doctor could get to know her. And then he
was very, very gentle with her at that point and to feel her out to see
how she would respond to him and then I set up, as of yesterday, an
appointment for a physical and it was a wonderful experience. The
doctor did a beautiful job in handling her on a comfortable level. He
got to her level so she could respond to him. It was a very good
experience.
Second Reflection: Embodiment: Choosing to Risk
Through the body, one gains access to the world.
The world is not what I think, but what I live through.
(Merleau-Ponty, 1962, p. xvi-xvii)
Benner describes the phenomenological view of the body as different from
the "Cartesian notion of the body as an object of possession" (Benner, 1994, p. 52).
In fact, we are our bodies. The lived body "refers to the phenomenological fact that
we are always bodily in the world" (van Manen, 1990, p. 103).
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Rawlinson describes how illness disrupts the person-world relationship of
the lived body.
Illness names that experience in which our own everyday embodied
capacities fail us. Illness obstructs our ordinary access to the world
and presents the body as a signifier for the way in which we are
limited and can be impeded in our encounter with the world.
When our embodiment fails, we discover that embodiment ordinarily
means reaching for, going toward, attending to what is present, and in
short, enjoying the capacity to encounter what is other.
Illness distorts our ordinary relationship with others insofar as it
debilitates, humiliates, and isolates (Rawlinson, 1982, p.74-76).
The people in this study chose to risk by seeking professional help for the
care of illness or pregnancy. The act of having a relationship with a health care
professional for the purpose of receiving health care services makes one a patient.
Rawlinson further describes that illness can
result in a surrender of one's autonomy and integrity of person out of
necessity or in hope that this surrender will be in the end useful in the
effort to recover those capacities which the illness obstructs and
threatens. This surrender makes one vulnerable and leaves one at the
mercy of others in significant ways (Rawlinson, 1982, p. 77).
Of particular importance is the meaning of the illness and the situation for
the individual. There is much written in the literature about physicians treating
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diseases, such as the appendicitis in room 405, instead of illnesses. Illnesses include
the lived body and the meaning for the individual about what is wrong.
Hafen and Kairen touch on the beginning perception of meaning from the
disease view.
The heart is a hollow, muscular
Organ the size of the fist
Once the patient remains
In clinical death for a certain time
(Typically four to six minutes),
Brain cells begin to die.
Along the edges of the eyelids
Are openings of many small oil glands
Which help prevent the tears
From evaporating too rapidly
(Hafen and Karren, 1989, p. 38).
These patients entered into relationships with health care providers
anticipating assistance with recovery or the monitoring of pregnancy. There were
places along the journey where provider treated them with unconditional regard and
attended to the meaning of the situation for the individual. The overwhelming
experience for the individuals was that there were also many places in the journey
where there was uncertainty and the choice to risk was, perhaps, not worth the cost.
William James tells us
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If no one turned round when we entered, answered when we spoke,
or minded what we did, but if every person we met "cut us dead," or
acted as if we were non-existing things, a kind of rage and impotent
despair would ere long well up in us, from which the crudest bodily
tortures would be a relief; for these would make us feel that, however
bad might be our plight, we had not sunk to such a depth as to be
unworthy of attention at all (James, 1905, p.179-180).
The uncertainty expressed by the patients contributes to a tenuous balance
both personally and within the family. The uncertainly leads patients to question,
develop action plans, and to move forward and assume responsibility despite an
inability to arrive at answers or solutions.
Metatheme M: Temporality: Waiting for Health Care
Table 6
Thematic Structure of Temporality: Waiting for Health Care
System Issues_______________________________________
Provider Issues
Beginning Reflection: Waiting for Health Care
I let Angel go on [Colorado] Access. She has a history of being
allergic to many antibiotics. We went in. They thought she had a
kidney infection. They wanted to prescribe something. They came
back at 6:00 on Friday night, but there was nothing on the formulary
that she wasn't allergic to. I just looked at her and said, "You're
talking about a kidney infection. We're not going to wait until
Monday" (Lisa).
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System Issues
System issues are identified as those subjective time-related issues occurring
within the managed care organization such as Colorado Access, the State Medicaid
Program, or social services. These issues are differentiated from those temporal
landscapes that occur at the individual provider's level.
Susan describes her application for Medicaid for herself and her son Jason.
[The process was] a little tedious. I know that you have to have lots
of papers...and the Social Services process for that, I thought, took a
very long time because you had to sit and wait amongst people who
were trying to get everything.. Jt just seemed a little tedious in trying
to get a hold of a case worker and not having this, or this paper....
I guess that, you know, you filled it all out, you went there, and they
say OK, here's a case worker, make an appointment, come back, and
you know...and you get it done, but a lot of times you just needed a
lot of different...it seems like papers to have this and this and this...
Joanne, whose daughter Sandra moved back in with her parents after living
in a group home, had her first contact with Medicaid.
I went in to see an eye doctor which I was told would take Medicaid
and when I got in there...on the meanwhile, Sandra's Medicaid card
had been changed to, and I forgot what it's called....Colorado Access,
without ever contacting her whatever, so I had no idea what had
happened. No one had ever contacted me at all...And all of a sudden
I was mailed a card and the card said Colorado Access which I had
no idea what it was all about And when we went to get her
medication, they would not even fill a prescription...We had to wait a
full week before we could get her medication...
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Amy remembers her family's transition to Colorado Access.
When I went to the pharmacy they had problems with the computer
change and it took awhile for it to change over.rm having a hard
time with Joseph getting a Medicaid card in the system because he's
so new to the family. But, yesterday when I went to Walgreen's to
get his medicine, he wasn't in the computer and he should have been.
And so she went ahead and said, "Normally I don't do this, but I will
go ahead. I've always come here. I come here for my birth control
pills, antidepressants all the time. So, she went ahead and did it.
Provider Issues
Health care providers have created landmarks along the journeys of these
patients. Geographic location of providers who will accept patients who have
Medicaid is really a significant issue with patients. In order to access care, they
have been asked to drive more than thirty miles in cars that have few miles left,
asked to spend hours on the telephone with a telephone book to try and locate
providers who will accept them, and given referrals by their PCP's for subspecialty
care without providers in the county who will accept them or for whom there might
be a wait of several weeks for a problem that is causing pain and suffering.
Joanne talks about the care for her daughter Sandra.
She's been in Boulder County almost 6 months now and we got one
appointment in to see the psychiatrist to just go in and get the
preliminary conversation with him. It's taken us this long to get back
in again...
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We did try a drug called Elavil which did not work. We tried it for
one week. We had one good week with it After 10 days, it would
just drive her up a wall where she just couldn't keep from self-
abusing, so we're at a point right now where we really need to get in
immediately to get her changed on the drug, but obviously we've got
to wait our turn to get in-
Shirley talks about the effect of spending 2-3 hours every day on the phone
accessing providers and referrals sources to get the needed care for her family.
I think it deeply affects me and I can't say that the depression I went
through and the stress I went through kept me from work, so I don't
know in terms of society how important that is, OK, but in terms of
my peace of mind, it's very important And then of course, there's
always the anxiety when the next time comes around, is it going to
happen again, you know. It makes you dread it...and yes, it affects
my pain, and in that regard, which I haven't thought of until this
moment it probably affects the number of timesit affects how often
I go to the doctor...
Susan and Jason have had the most time-related issues with waiting for
dental care for Jason. Jason has required a considerable amount of dental care
because he has "really soft teethhad many cavitieshad oral treatments." When
she calls for an appointment, it's "usually about six weeks in advance." Even with
an abscessed tooth, Jason had to wait several weeks.
Lisa relates her concern about health care access with private health care
providers.
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When I call Social Services...and the last time I picked up a list from
them, there was not one doctor on the list who was taking new
patients. In fact, some of them had disenrolled from taking Medicaid
patients.
This limited selection of providers generally results in her making many
telephone calls to find a provider for herself or her daughter.
Second Reflection: Waiting for Health Care
If time is similar to a river, it flows from the past towards the present
and the future. The present is the consequence of the past, and the
future of the present (Merleau-Ponty, 1989, p. 411).
Lived time or temporality is subjective time, van Manen also describes how
lived time "appears to speed up when we enjoy ourselves, or slow down when we
feel bored...or when we are anxious..."(van Manen, 1990, p. 104). Lived time is also
related to developmental stages across the lifespan. For example, a young adult
typically views the future landscape in terms of going to college, getting a job, or
getting married and having children. On the other hand, an elder is more likely to
look at life's retrospective landscape through reminiscence.
The word patient has an interesting etymology. Coming from Middle
English, Middle French, Greek, and Latin; origins show the beginnings of "to suffer,
almost, need, and suffering." The current definitions include:
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(a) bearing pains or trials calmly or without complaint; (b)
manifesting forbearance under provocation or strain; (c) steadfast
despite opposition, difficulty, or adversity; and (d) an individual
awaiting or under medical care and treatment (Websters, 1963, p.
618).
Casell believes that one's past, present, and future experiences influence
one's experience with illness.
Life experienceprevious illness, experiences with doctors, hospitals,
and medications, deformities, and disabilities, pleasures and
successes, miseries and failuresall form the nexus for illness
(Cassell, 1982, p. 642).
How do these patients view temporality within the context of being a
Medicaid patient? The phenomena of time experienced as a Medicaid patient
through the temporality of being in the world as well as the temporality of
relationships with providers and the health care system. There is an uncertainty that
surrounds these relationships and affects the intentionality of the individual patients
to conduct their lives in an autonomous way.
Benner and Wrubel present this as the notion of situated freedom, when
patients come to the situation with their own meanings, habits, and perspectives. It
is the individual's history that opens up the possibilities for the person within the
situation.
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The situation offers both what the person may want to be free from,
and what that person may be free to be or accomplish because the
situation offers alternatives that show up as relatively more or
relatively less desirable. This is the definition of participating in a
meaningful world in terms of situated freedom (Benner and Wrubel,
1989, p. 23).
Benner and Wrubel also acknowledge that individuals are not free to
disengage from these situations and relationships simply because it is stressful.
Through the patient's view, the onset of the uncertainty regarding the timely
access to health care services or the reasonable location of quality health care
providers is an outcome of cognitive dissonance and confusion with a past reality
while reflecting on their new reality, and maintaining hope for a preferred future. It
is this continuing process of resolution, or perceived lack of resolution, that creates
ongoing anxiety, concern, and uncertainty for these patients.
Metatheme IV: Relationalitv: A Compromise to Autonomy and Liberty
Table 7
Thematic Structure of Relationality: A Compromise to Autonomy and Liberty
Patient Rights__________________________________________________________
Choice__________________________________________________________________
Paternalism _______________
Beginning Reflection: A Compromise to Autonomy and Liberty
I didn't feel like a person, I felt like a non-person. Truly, because I
was on Medicaid...I had lost my rights to make decisions for myself
and to have a say about the care I got. Humiliating would be a good
word (Lisa).
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Patient Rights
Patient rights are accepted standards of care assured patients when they are
in the health care system whether they are being treated by physicians, nurses, or
care given when in the hospital. For example, patients have the right to be fully
informed about any treatment that may be offered or done to them and to give their
consent before the treatment is initiated.
Joanne remembers when her daughter who is developmentally disabled, had
a hysterectomy. Joanne went to the hospital in Northern Colorado and spent 24
hours per day with her. Sandra was 37 years old.
The hospital care was wonderful there, but very, very limited. They
dismissed her after 3 nights because that was all Medicaid would
pay...She had no one to provide any care for her after she went out of
the hospital and I don't know what would have happened to her if she
had not had parents that could have taken her....There would have
been no one there [at the group home] to care for her...They were
very, very clear...She didn't understand what had happened...We kept
her for 10 days and then she had to go back and go back to
work...Two weeks after a complete hysterectomy because there was
no one to care for her and that is heart breaking.
Lisa reflected on a time when she had a cervical biopsy from a physician.
You know I never saw a pathology report I mean that's one of the
parts of having been on Medicaid is when I say, "What is my blood
pressure?" Simple vital signs are unavailable.
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[During the procedure] when I thought I heard him say, "shit" it was
a sharp pain and it hurt right over where I thought my right ovary
was. I asked what had happened and was told to "mind my own
business." Later when I went to a different doctor, I was told that
75% of my cervix had been removed.
Shirley remembers a journey that started with a breast biopsy. She is very
large-breasted and has a history of back trauma and surgery that combined truly
cause a great deal of pain and limit her ability to lift anything more than eight
pounds or to sit for any prolonged period. The surgeon who did the biopsy told her
she should consider seeing a plastic surgeon for a breast reduction that would
probably improve her capacity to lift and sit and would also reduce her pain.
And even though the idea wasn't very appealing to me, I went to the
plastic surgeon after my PCP approved this. I called Colorado
Access to see would they approve it, and they said yes for medical
reasons they would. And so, my back pain is definitely a medical
reason...And then, when the whole thing gets to Colorado Access,
they denied it And my doctor was very, very upset because now
there are 2 physicians saying this woman really needs this. They
denied it based on my weight and my doctor got on the phone with
them and he talked to them for over an hour...and he was very, very
upset but he said as far as he's concerned, it's money, and money
only, and that he could see no other real consideration...
Lisa is quiet and tearful when she relates a story with one of the nurses at the
clinic. She is someone who she liked and thought was a really nice person.
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