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Sexual (Dys)function and Benign Prostate Disease:

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Sexual (Dys)ftmction and Benign Prostate Disease: Implications for Health Care
Decision-Making

By

Karen Denise Kelly-Blake

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Anthropology

2008

ABSTRACT

SEXUAL (DYS)FUNCTION AND BENIGN PROSTATE DISEASE: IMPLICATIONS
FOR HEALTH CARE DECISION-MAKIN G

By
Karen Denise Kelly-Blake

This research examines medical decision-making involving the possibility of
sexual dysfunction as a side effect of treatment of prostate problems in older black and
white American men. The context for this analysis is the recent movement towards
“shared decision-making” between doctors and patients. The shared decision-making
movement grows out of the importance of informed consent, and doctors’ ethical
obligation, frequently not well carried out, to include patients in treatment decisions.

In this dissertation, I analyze how men across social class and race respond to the
invitation to share in decision-making—to “talk back” to the doctor. Additionally, this
research focuses specifically on men’s questions, as they look at a video “decision aid”
designed to encourage shared decision-making in the treatment of non-cancerous prostate
problems. I apply the tools of medical anthropology to critically analyze the assumption
of the patient-centered care movement that simply informing men of the pros and cons of
treatments will empower them. The task of this dissertation research is to tease out
whether men understand and accept the shared decision-making message or whether
issues of race, class, masculinity, and experience in the world may undercut messages of
empowerment and rational choice.

A key finding is that men view BPH treatment as a high stakes decision.
Additional findings suggest that men are conservative in their ordering of treatment

preferences. They choose watchful waiting first, over medications and surgery. This

research is important because it is one of the first to report an analysis of sexual concerns
among an educationally and racially diverse sample of men. Men are quite hesitant to
choose treatments that may negatively impact their sexuality. The study findings also
highlight the importance to men of legitimizing watchful waiting as a viable treatment
option. However, in routine health care practice, watchful waiting may not be routinely
presented as a treatment option. To the extent that men’s preferences and health care
provider approaches to counseling men are mismatched, a contributing factor to men’s
health disparities is not effectively addressed. It may be important to create a new type of
“decision-making clinical visit” for important, but non-urgent decisions that involve
potentially irreversible patient outcomes.

For anthropology, it will be important to understand that men’s health and male
sexuality are a couplet. But, first, we have to get on the men’s health train. If we are to
be culture scientists, it would be to our detriment to neglect a ripe field of study, and
especially, those anthropologists that subscribe to “studying gender.” Men want to
maintain a sexual self, and age, race, or education does not dampen this desire. Future
research would entail asking men of different ages and racial backgrounds specific
questions about health and sexuality, and how the interplay of these two features are
important, if indeed they are, to other clinical decisions. Also, examining actual patient-
doctor encounters in the clinical setting would provide an insightful gaze into the
balances of power and how the shared decision-making process works, perhaps
permitting us to engage in a discourse that moves beyond men’s “doing gender” to

explain men’s poor health outcomes.

Copyright by
KAREN DENISE KELLY-BLAKE
2008

For Cameron.

ACKNOWLEDGEMENTS

It is hard to know where to begin to thank all of the wonderful people that guided me
through this most important task, so I will begin at the beginning. Dr. Hitchcock, thank
you for entering the race when you did. Your participation was the final push we needed
to get to the finish line. Dr. Pugh, thank you for making me laugh and for helping me
make some sometimes big and sometimes very tedious decisions. Nancy, thank you. You
have been invaluable throughout this process, and without your extensive knowledge and
professionalism, there is no way I could have navigated this maze. To Gail, you are a
kind and generous soul who always greeted me with a smile, and a prayer. You have
been supportive, encouraging, and a dear friend. I miss you. To Drs. Margaret Holmes-
Rover and David Rovner, you have been my friends, my advisors, my mentors, and my
family. You granted me a wonderful opportunity to work on a project that I am sure has
spoiled me for all future research collaborations. Thank you for. your encouragement and
support and for making me believe when at times I had my doubts. Ann, what can I say?
You were there from the beginning. Like Margaret and David, you have been my
advisor, my mentor, my friend, and my family. You have guided, encouraged and
supported me; you have advocated on my behalf, and you have cried with me and for me.
Thank you for hanging in there with me because this is the outcome we both worked so
hard to achieve. To LB, my friend, my sister, my runnin’ partner! You are a blessing in
my life, and I am eternally grateful for you. We have screamed, ‘cussed, and
“eronorated” to no end, but in the midst of the tears and the swearing, we have loved

anthropology. Now, it is your turn. To my mother, Annie, who would every once in a

vi

while ask, “Are you working on your paper?” Thank you for asking and kindly keeping
me on task. And lastly, but definitely not least, to my husband Reynard, thank you for
your encouragement and support. You could always see the light at the end of the tunnel
even when at times all that I could see was a dim flicker in the vast darkness. You never
gave up, and you never let me forget how proud you were of me. Thank you for

believing. I love you.

vii

TABLE OF CONTENTS

LIST OF TABLES ......................................... _ ................................... xi
CHAPTER 1 INTRODUCTION .......................................................... 1
Study Purpose ............................................................... 2
Background .................................................................. 4
Definition of Problem ...................................................... 6
BPH Treatment Options .................................................... 6
Watchful Wart1ng6
Medication .......................................................... 7
Surgery ................................................................ 7
Organization of Dissertation .............................................. 8
CHAPTER 2 BACKGROUND AND OVERVIEW ................................... 11
A. Theoretical Points of Departure and Antecedents: Decision-Making,
Masculinity, Sexuality, Race, Racism, and Whiteness ................ ll
Decision-Making ........................................................... 14
Cultural Conceptions of Masculinity ............... . .................... 17
Sexuality ..................................................................... 19
Race and Racism ........................................................... 21
Health Disparities ................................................. 24
Whiteness .......................................................... 26
Aging ........................................................................ 27
Operational and Conceptual Definition of Social Class .............. 29
B. Theoretical Points of Departure in Medical Anthropology ........... 38
Critical Interpretive Medical Anthropology ........................... 38
The Body ................................................................... 45

viii

CHAPTER 3 METHODS .................................................................. 41

A. Health Information and Decision-Making Project (HIPD) ........... 41
B. Research Questions ........................................................ 42
C. Study Location ........................... . ................................. 4 2
City Brief .......................................................... 43
Socioeconomic Brief ............................................. 44
Current Outlook ................................................... 45
D. Study Sample ............................................................... 47
Incentives ........................................................... 50
E. Data ........................................................................... 52
BPH videotape: stimulus for discussion ................................. 52
Content Analysis: talk about sexuality in the video .................... S6
Surveys ....................................................................... 59
Data Retrieval ............................................................... 59
F. Coding Content and Analysis ............................................. 6O
Codes ......................................................................... 61
CHAPTER 4 RESULTS .................................................................... 66
A. Analysis of Question 1:
Sexual Dysfimction and Decision-Making about BPH treatment for men
aged 50 years and older ................................................... 66
BPH Treatment Preferences and Sexual Dysfunction ......... 67
B. Analysis of Question 2:
Factors that Trigger Concern about Sexual Dysfunction among Black and
White Men ................................................................... 70
Role of Sexual Partner .......................................................... 72
Role of Age ........................................................................... 74
C. Analysis of Question 3:
Influence of Education, Social Class, and Race on Men’s Decision-
Making .............................................................................................. 75
D. Analysis of Question 4:
Men’s Definitions of Masculinity and Male Sexuality and the Difference
in Definitions between Black and White Men .................................. 78
E. Analysis of Question 5:
Definitions Shaping Health Care Decision-Making for Men ............ 8O

ix

CHAPTER 5 DISCUSSION ................................................................ 84

Overview of Study .......................................................... 84

Summary of Main Findings ............................................... 84

Study Limitations ........................ _ ................................... 86

CHAPTER 6 CONCLUSIONS ............................................................ 88
Anthropological Implications ........................................................... 88

Clinical Implications ........................................................................ 93

Expanding the model of men’s health ................................. 93

APPENDIX ....................................................................................... 98

REFERENCESCITED 127

LIST OF TABLES

Table 1 Number of individuals in each group (n=188) ........................................... 47
Table 2 Subject Characteristics (n=188) ............................................................ 47
Table 3 Comparisons by Education (n=188) ...................................................... 48
Table 4 Comparisons by Race (n=188) ............................................................ 48

Table 5 Videotape Content on BPH Treatment and Sexual Dysfunction... ..................56

Table 6 Classification of AUA Symptom Score .................................................. 59
Table 7 Race, Education, and Age Characteristics ............................................... 66
Table 8 Treatment Preference Order ............................................................... 68

xi

CHAPTER 1 INTRODUCTION

How the possibility of treatment-induced sexual dysfunction impacts men’s
decision-making about benign prostatic hyperplasia (BPH) treatment has not been well
studied. This research draws upon the data from a study testing the effect on men’s
decision-making of exposure to a shared decision-making educational videotape. The
video was designed to provide information about BPH and its treatment, and to help men
incorporate their personal values about positive and negative effects of treatment into
decision-making.

The overall objective of the Health Information for Patient Decision Making
(HIPD) study was to examine how a racially and educationally diverse sample of men
interpret and use information in reaching informed decisions about BPH treatment in
response to a previously developed and tested educational videotape produced by the
Foundation for Informed Decision Making (Rovner et al. 2004). HIPD interviewed 188
men using a 2 (education level) x 2 (race) design (the goal was to obtain an equal number
of participants in each cell). Men aged 50 and older, and who self-identified as African
American/Black or European American/White, were selected for participation. HIPD
focused on men of the right age to experience BPH symptoms and likely to be concerned
about BPH and able to make a realistic decision about BPH treatment. The men viewed a
videotape on BPH treatment and side effects and although some questions were
structured, most were open-ended to allow participants to react and respond to the video
when desired and in their own words. Men who matched the participants by race and

approximate age conducted interviews lasting 2-3 hours.

Study Purpose

The purpose of this research was to examine how the possibility of sexual
dysfimction, when presented as a side effect of treatment, is incorporated in the BPH
treatment decision-making of older Black1 and White2 American men. The men in this
project were the appropriate age to experience symptoms of BPH and thus ready to make
a decision regarding its treatment.
I pose the following questions: I) How does concern about possible sexual dysfunction
affect decision-making about benign prostatic h yperplasia (BPH) treatment among
men aged 50 years and older? 2) What factors trigger concern about sexual
dysfunction among Black and White men? 3) In what way, if any, do education, social
class, and race” influence decision-making of men? 4) How do men define masculinity
and male sexuality? Is there a difference in definition of masculinity and male
sexuality between Black and White men ? 5) How do these definitions shape health care
decision-making for men ? I

This dissertation research analyzes men’s conversations about the material in the
video to examine how they consider the trade-off between improved BPH and the
likelihood of treatment induced sexual dysfimction in making a treatment decision. In
addition, this study examines men’s discussion of treatment trade-offs in the context of
the ideas they articulate about aging, male sexuality and masculinity. Moreover, this
project addresses medical decision-making and how men make decisions regarding

medical treatment in the contexts of aging, male health, and male sexuality.

 

' Black and African American will be used interchangeably.

2 White and European American will be used interchangeably.

3 The term race has several controversial and unsettled connotations. Although I recognize its lack of
biologic meaning, it is important as a social construct.

There is a concern in the healthcare literature about how to explain and account
for increased morbidity and mortality amongst men compared to women (Cameron and
Bemardes 1998; Courtenay 2000b; Fleming 1999). A common explanation is that men
adopt and maintain lifestyles that are likely shaped by greater risk taking and less self-
care (Watson 1998). In short, there is a tendency to explain men’s poor health outcomes
as a result of men’s “doing gender,” i.e. men acting in ways that conform to traditional
hegemonic masculinity and that negatively impact their health. For example, real men do
not acknowledge pain, they play/work through it; real men don’t go to the doctor; real
men work hard and play hard; real men drink to excess and get up and go to work the
next day; and real men don’t whine. Of course, many men would not fit this profile, and
doing gender alone cannot explain men’s poor health. However, Courtenay (2000a)
explains that

these health-related demonstrations of gender and power represent forms of

micro-level power practices, practices that are part of a system that affirms and

(re)constitutes broader relations of inequality. In exhibiting or enacting

hegemonic ideals with health behaviors, men reinforce strongly held cultural

beliefs that men are more powerful and less vulnerable than women; that men’s
bodies are structurally more efficient than and superior to women’s bodies; that
asking for help and caring for one’s health are feminine; and that the most

powerful men among men are those for whom health and safety are irrelevant (p.

1389).

Although it is doubtful that Black men could make the claim to power central to

hegemonic masculinity, their poor health outcomes cannot be explained solely by doing

gender nor can White men’s. Gender, social class, and race interact to account for men’s
overall health status, and Black men’s historically poor health status.
Background

Informed decision-making by patients is the gold standard in health care,
particularly for utility-sensitive decisions such as treatment for benign prostatic
hyperplasia (Rovner et al. 2004). “Utility” is a quantitative measure of the value a
decision-maker places on the health outcomes likely to occur as well as the chance of
those outcomes happening (Weinstein et al. 1980). In other words, patients make choices
based on acceptable risks. BPH treatment decisions can be complex, involving
significant tradeoffs and decisional conflict, making formal treatment decision supports
potentially beneficial.

Educationally and racially diverse samples of men have not been well studied,
however. Better understanding of men's treatment preferences can foster improved
shared treatment decision-making and suggest ways men interpret medical information
when it is made explicitly available to them. Explicit information about risks and benefits
of treatment options, including declining treatment is rarely provided to patients. A
recent initiative to provide such information in order to allow patients to evaluate
evidence and share decisions with their doctors has resulted in innovative videotapes to
present the medical information. These are often called Decision Aids (DA) because
their purpose is to present side effects and outcomes, and assist men in formulating
preliminary treatment preferences to discuss with their doctors. Little is known about
how men respond to these explicit invitations to consider options and make choices or the

resulting patterns of stability or change in preferences in response to DAs. Central

principles that guide the developers of DAs to make the videos technically accurate
include: (1) providing accurate, balanced, complete, and accessible information about
BPH and treatment; (2) addressing patient preferences for outcomes; (3) supporting
patients to make and enact treatment decisions based on adequate information and
incorporating personal values (Wills et al. 2006).

Men making BPH treatment decisions have been found to gain knowledge and are
less likely to opt initially for riskier treatments. Rovner et al. (2004) found that after
viewing a videotape strongly advocating the shared decision-making model knowledge
gain showed a modest increase to 50% after a baseline of 30%. The knowledge gain
produced by the decision aid (DA) was the same among all groups, although the pre-
video knowledge was lower in African-Americans and in non-college-educated men.

Wills et al. (2006) found that men were generally more conservative in their
treatment preference choosing watchful waiting over the other treatment modalities, and
risk avoidance emerged as an important determinant of treatment choice. Men's decision-
making about treatments (watchful waiting/decline treatment, accept medications, or
accept surgery) ideally should depend upon individual preferences. Treatment outcome-
risk tradeoffs involve individual lifestyle considerations, including symptom bother and
personal risk preferences. For example, surgery is the most effective treatment, but it also
carries the highest risks. Use of surgery has decreased over time due to side effects
concerns. The benefit-risk ratio can change based on BPH severity, age, health status, and
other factors. Treatments often improve symptoms, but not all individuals benefit from
treatments. Ninety-percent of men aged 70 years and older will experience some

symptoms. BPH is not a life-threatening condition, and it appears to be more common in

Afi'ican American and European men compared to Asian men, pointing to a possible
lifestyle component (Barrett 2000).
Definition of Problem

Benign prostatic hyperplasia (BPH) is a non-cancerous enlargement of the
prostate gland that is highly prevalent in older men. BPH can cause bothersome
symptoms such as urinary hesitancy and frequency that can significantly impact the
quality of life. However, BPH treatments can cause side effects that include the
possibility of impaired sexual function. Limited information is available about how men
view tradeoffs between BPH symptoms and treatment risks. Older adults often remain
and value being sexually active well into later life (Meston 1997). Of men who have
BPH, only half will experience symptoms that become noticeable or annoying enough for
them to seek medical treatment (Barrett 2000). A diagnosis of BPH usually does not
require immediate medical intervention. Many men decide to tolerate the inconveniences
of BPH rather than treat it (Barrett 2000).
BPH Treatment Options
fltchful Waiting

Watchful waiting is monitoring and evaluating the condition to determine if and
how it changes (Barrett 2000; Benign Prostatic vaemhfiia 2000). The advantages of
this treatment are that it is non-invasive and relatively inexpensive. The disadvantages
are that the condition could drastically worsen or more serious problems could develop

(Barrett 2000; Benign Prostatic Hyperplasia 2000).

Medication

Medication has become the most common method of treatment for moderate
symptoms of BPH (Barrett 2000). Men who find the symptoms more bothersome than
those who opt for watchful waiting usually use medication. The two classes of
medication available for BPH work to increase the ease of urine flow. Some of the
potential side effects of medication are headaches, dizziness, impotence, retrograde
ejaculation (semen flows backward into the bladder during orgasm), and decreased
libido.

Surgery

Several types of operation exist, but all remove some prostate tissue. The
potential side effects of surgery include impotence, loss of bladder control, and retrograde
ejaculation. Open prostatectomy is another type of operation that is rarely performed for
BPH. It has the highest rate of complications.

In sum, enhanced healthcare partnership approaches place a heightened emphasis
on patient preferences regarding the acceptability of benefit/risk tradeoffs in treatment
decisions that impact quality of life, such as sexual well-being (Kelly-Blake et al. 2006).
This study represents a key contribution to a currently limited body of knowledge and
research literature about the sexual concerns of men in relation to BPH treatment. Most
of the data presented here support the notion that many men continue to have an interest
in sex and remain sexually active in later life. Maintaining that activity in the wake of
urologic distress becomes a compelling issue for an increasing number of aging men

when they are fully informed about the side effects of a potentially helpful treatment for

BPH symptoms. For at least some men, sexual concerns about the effects of BPH
treatments may influence their preferences for BPH treatments.
Organization of Dissertation

This dissertation research considers the decisions men make about BPH treatment
based on potential side effects of treatment, as well as how those decisions may be
influenced by aging, male sexuality and masculinity. I provide an overview of these
influences in Chapter 2: Background and Overview, which is divided into two theoretical
subsections. In the first subsection, I provide a definition and overview of decision-
making, masculinity, sexuality, race, racism, and Whiteness. This overview serves to
explain that in today’s healthcare environment the activated, informed patient exemplifies
the ideal healthcare consumer while also considering that men’s definitions of
masculinity and male sexuality may shape their healthcare decision-making. Race,
racism, and Whiteness provides a general context for the study since my research focuses
on Black and White men it is important to historically ground their experiences in the
United States and how that may translate into their experiences in the healthcare system.
For example, I provide a brief discussion of health disparities and how health inequalities
in the US may factor into men’s health care decisions. Additionally, the discussion of
Whiteness contextualizes White men’s experience in the US as way to understand
possible differences between White and Black men in definitions of male sexuality and
masculinity and how these definitions come into play when making health care decisions.
Lastly, I provide a definition and overview of aging and social class. The discussion on
aging provides a general context since the men in this analysis are the appropriate age (50

and over) for experiencing BPH symptoms, and older men’s definitions of male sexuality

and masculinity will be important in guiding their healthcare decision-making. The
discussion on social class provides the means to analyze any differences by education,
income, or occupation that may occur in response to an invitation to engage in shared
decision-making with healthcare providers. The second theoretical subsection of Chapter
2 provides the theoretical underpinning for this research. It contextualizes decision-
making at the macrolevel (race, Whiteness, social class, healthcare and its associated
disparities in the US) and the microlevel (men’s definitions about masculinity, sexuality,
and how men engage in healthcare decision-making about BPH treatment. Also included
in this section is a brief discussion about the body. This discussion allows an opening for
an examination on how White and Black male bodies may be perceived differently by the
research participants themselves and others. It also provides a lens into men’s decision-
making about BPH treatments that may effectively result in sexual dysfunction.

Chapter 3 is Methods where I outline my research questions, and give an
overview of the study locale and study sample. I explain how I coded the transcribed
interviews using QSR N5 qualitative software, and provide the codes used. I provide an
outline and description of the BPH video, and provide summary descriptive tables of the
research data.

In Chapter 4: Results I address each research question separately. I have analyzed
all the interview data, and provide answers (as much as can be answered) for each
research question. Although I have attempted to provide answers for each question,
sometimes the data did not elicit full answers. This, of course, speaks to the limits of the

research design.

In Chapter 5 I discuss the results and how they address or fail to address my
hypotheses and what that may mean, provide a summary of the main findings, and outline
the limitations of the study. In Chapter 6: Conclusions, I elaborate the link between what
was discovered in the study and critical medical anthropology in the Anthropological
Implications section. I discuss how macrolevel structural features such as power is
manifested in the clinical patient-doctor encounter in the decision-making process.
Shared decision-making at its core must be understood as a relationship of power and
who has the power to make a decision. In the Clinical Implications section I discuss a
new model to elaborate men’s health. This Partnership Model advocates a true
collaboration between patient and physician, and a discussion on the usefulness and value
of well designed decision aids.

Finally, this research is uniquely situated in today’s healthcare environment as
patients are increasingly urged to become involved in treatment choices by working
through medical evidence to decide on a course of action with their doctors. This
research shows that older men consider a variety of contextual factors that must be

understood before for the call to engage in shared-decision making is answered.

10,

CHAPTER 2 BACKGROUND AND OVERVIEW

A. THEORETICAL POINTS OF DEPARTURE AND ANTECEDENTS:
DECISION-MAKING, MASCULINITY, SEXUALITY, RACE, RACISM, and
WHITENESS ’

“Men’s health” is a phrase that became popular in the 1990s (Sabo 2000;
Cameron and Bemardes 1998; Courtenay 2000b). It loosely refers to a number of men’s
health concerns such as prostate cancer, hypertension, and heart disease. While these
concerns remain in the forefront within an overall emphasis on conditions that may
adversely affect the quantity of life, conditions that affect the quality of life have often
received less attention in research on men’s health issues (Penson and Krieger 2001).
Therefore, a broader perspective on men’s health issues must be undertaken to fully
develop the conceptual basis of men’s health, going beyond addressing mortality
associated with disease conditions (Penson and Krieger, 2001).

There is a well-recognized and substantial gap in life expectancy between men
and women. There have been numerous calls to close the gap between men and women
in both longevity and illness experience (Rieder and Meryn 2001). Despite historic
assertions that maleness in and of itself is a “death sentence,” other factors may be
important to consider when discussing men’s health, especially gender disparities in
quantity and quality of contact with the health care system:

An alarming proportion of American men have only limited contact with

physicians and the health care system generally. Many men fail to get routine

check-ups, preventive care, or health counseling, and they often ignore symptoms

or delay seeking medical attention when sick or in pain (Sandman et al. 2000).

11

In view of this, it has been argued that men should be specifically targeted for prevention
campaigns that could significantly improve their health, as one means of reducing gender
health disparities. For example, Reider and Meryn (2001) suggest:

Not only must appropriate primary and secondary prevention measures be taken,

but support for gender-specific research and dissemination or translation of the

results into health-care practice needs improvement (p. 842).

However, there are substantial barriers to achieving appropriate levels of health care for
men. The notion of men’s health is less well defined than the female counterpart, and (as
a result) suffers from a lack of awareness, which in turn affects the medical care and
treatment men receive (Lancet 2001). Specific obstacles related to improving men’s
health include other factors related to the definition of and awareness of men’s health,
such as lack of participation in prevention strategies, gaps in health awareness, delayed
help seeking, and risk behavior. In the context of these barriers, appropriate efforts must
be made to motivate and encourage men’s participation in measures to prevent health
problems (Rieder and Meryn 2001).

Moreover, given that BPH and its treatment may cause sexual impairment, BPH
treatment outcomes are likely to be of high importance to men. Helgason et al. (1996)
report that 83% of their sample of 319 men aged 50-80 years old in the general
population regarded sex as ‘very important,’ or, ‘a spice to life.”’ Sexuality is a
fundamental quality of life issue that does not diminish as a function of increasing age
(Wiley and Bortz 1996; Bokhour et al. 2001). Wiley and Bortz (1996) report that men
found their decrease in sexual frequency as somewhat or very troubling. In addition, men

over the age of 70 had failed to come to terms with their decreased sexual activity.

12

It has frequently been shown that both BPH and decreased frequency of coitus occur as
men age (Kassabian 2003; Frankel et al. 1998; Namasivayarn et al. 1998; Jakobsson et
al. 2001) though they are not causally related. Meston (1997), Helgason et al. (1996),
and Jakobsson et al. (2001) argue that men and women may remain sexually active well
into later life, thus refuting the “prevailing myth” (Meston 1997) that aging and sexual
dysfunction are irrevocably linked. Wiley and Bortz (1996) conducted a three-part
educational series on primary topics associated with sexuality and aging. They found that
their group of males and females had sex about once per week or less. This was in
contrast to the recall of activity 10 years prior, which reflected substantially more sex.
They also found that those in the group over the age of 70 reported active sex lives.
Interestingly, although the men and women in the group expressed general satisfaction
with their sex lives a large percentage of them desired more frequent sex. Sixty-six
percent of the men and 57% of the women, under the age of 70, and 48 % of the men, and
55% of the women over the age of 70 wanted to have sex two or more times a week
(Wiley and Bortz 1996). This may indicate that what is the “usual” is not the “ideal.”
One limiting factor, however, may be the lack of available sexual partners. In addition, it
is possible that the Wiley and Bortz (1996) study may incorporate biases in sample
selection and study participant reporting that could have affected the results of the survey.

Based on these findings from prior research, it is reasonable to hypothesize that
sexual concerns may be relevant in men who are experiencing BPH and for whom
treatment for BPH may be appropriate. The following sections expand the discussion of
the activated, informed patient—the ideal in today’s healthcare environment; men’s

definitions of masculinity and male sexuality and how their definitions may shape their

13

decision-making about BPH treatment; and their experiences with healthcare and whether
those experiences have in any way been tempered by race, Whiteness, or class.
Decision-Making

Shared decision-making (Coulter 1997; Entwistle 2000; Charles et al. 1999) is a
model that brings patients into the medical decision-making process. At its base, it
assumes an egalitarian interaction between doctor and patient and a discussion and
transfer of information that concludes with a joint treatment decision. Charavel et al.
(2001) argue that although this model is upheld as the ideal model, it remains poorly
defined and difficult to apprehend. Charavel et al. identify three successive stages within
the framework of shared decision-making: 1) informing the patient of the risks and
benefits of the treatment options using language that is as bias-free as possible, 2)
discussion between physician and patient must take place about the medical information
and the patient’s values, and 3) a joint treatment decision must be reached. Charavel et
al. suggest that the last two stages, unlike the first, are either neglected or are poorly
structured and thus do not allow the physician and patient to make the decision together.

Elwyn et al. (1999) contend that it does not make sense to ask patients to engage
in a decision-making process before they have had time to understand the probabilities of
benefits and risks associated with viable options. Only when they have had the
opportunity to do this can they play an active role in the decision process. Guadagnoli
and Ward (1998) suggest that participation should be defined by whatever level the
patient is comfortable with—beyond the response of “you decide for me doctor.” They
go on to recommend that physicians need to evaluate a patient’s level of readiness for

participation in decision-making and to tailor interventions accordingly, if active

14

collaboration is to be achieved. I would argue that physicians might perceive this as
another unnecessary and undue burden especially when the average doctor’s visit is 15
minutes (personal communication, David Rovner, MD, Professor Emeritus, August
2004)

Dekkers (2001) explains, “decision-making may take on the form of a more or
less conscious decision not to be involved in making all kinds of explicit and deliberate
decisions.” In short, deciding not to make the decision is a decision. The problem with
this is that since the competent, autonomous individual is the cornerstone of medical
ethics (Moazam 2000), and that participation in medical decision-making is justified on
humane grounds alone (Guadagnoli and Ward 1998), the decision not to make a decision
is unacceptable to those advocating the shared decision-making model. Guadagnoli and
Ward (1998) concede that some patients feel that they are already on unequal footing in
the doctor-patient interaction that it is easier to agree with the paternalistic model.
Patients tend to do what they have always done, and may adopt a passive role because
they are unaware of other options. So, can patients participate fully? Guadagnoli and
Ward (1998) suggest that patients are more concerned with pleasing the nurse or
physician, rather than participating in decisions about their care.

Therefore, we may ask if we have really moved from the paternalistic model (a
model where the physician alone makes medical decisions for the patient and the patient
complies), which has been so criticized, since basically it is still the physician who
prescribes and so commands. I would agree with Charavel et al. that the relationship
remains asymmetrical because the physician structures and imposes the framework of

interaction from which the physician-patient relationship is organized. Moazarn (2000)

15

asserts that the competent patient is considered an autonomous and rational agent who is
sovereign over her/his fate and the locus for all choices regarding therapeutic
interventions. It would be safe to say this is the idealized model in secular Western
societies. I

I contend that the doctor-patient relationship, the interaction, and the conversation
occur within an environment that reflects the history and socio-politics of the United
States. During a 15-minute visit, past and present experiences may intenningle in ways
unknown to both patient and doctor. Few studies have analyzed the use of decision aids
in racially diverse audiences. This project investigates medical decision-making across
race, exploring Black and White men’s experiences with healthcare decision-making.

Black men who have lived through Jim Crow, segregation, the Civil Rights
movement, who grew up in a society that constantly informed them that they were less
than men and subordinate to White men, may find it difficult to enter into a conversation
with their physicians, particularly with White physicians, and believe they can participate
in a health decision in a truly egalitarian manner (Winant 2001; Smith 1999; Marable
2002). Moreover, shared decision-making, in some arenas, has been co-opted by
proponents of “personal responsibility” (Powe 1994;1995). Increasingly, health care
consumers are directed to “take charge” of their lives. They are personally responsible
for their health status and outcomes, and are strongly encouraged to eat healthy, exercise,
reduce stress, and take better care of themselves. This is very good advice, however,
“personal responsibility” proponents are quick to severely admonish persons not living
up to their responsibility especially given that shared decision-making at its base is about

both doctor and patient “taking charge” and ideally assuming equal responsibility and

16

accountability for positive health status and outcomes. It is this additional element that
may make men feel that they are to blame for perceived indecisiveness or for making the
“wrong” decision regarding BPH treatment (Holmes- Rovner et al. 2005; Powe
1994:1995). ‘

Alternatively, White men may feel very much at ease with their physician
irrespective of race. There is an expectation that White men have autonomy and
authority, and with such, welcome the opportunity to engage in shared decision-making
(Connell 1995; Omi and Winant 1998) Of course, one’s willingness to participate may
also depend on factors like level of education, occupation, and income.

Cultural Conceptions of Masculinity

Connell (1995) warns that there is no singular masculinity, but multiple
masculinities. It is not enough to recognize the multiplicity of masculinities, but there
must also be an understanding of the interplay between them. While recognizing Black
as well as White, working class and middle-class, it is important not to think of these
masculinities as concrete objects. Analyzing the relations between multiple masculinities
involves unpacking race and class along with gender (Connell 1995; Collins 1996).

Hegemonic masculinity is the idealized form of masculinity at a particular place
and time. Courtenay (2000a) declares

it is the socially dominant gender construction that subordinates femininities as

well as other forms of masculinity, and reflects and shapes men’s social

relationships with women and other men; it represents power and authority.

Today in the United States, hegemonic masculinity is embodied in heterosexual,

17

highly educated, European American men of upper-class economic status (p.
1388).
Connell (1995) emphasizes that normative definitions of masculinity, such as the case
with hegemonic masculinity, are problematic because very few men meet the normative
standard. Sabo (2000) further explains
hegemonic masculinity refers to the prevailing, most lauded, idealized, and
valorized form of masculinity in a historical setting. In the United States,
hegemonic masculinity accentuates male dominance over women, physical
strength, proneness to violence, emotional inexpressivity, and competitiveness (p.
136)
Even so, hegemonic masculinity is an important analytical tool for understanding men’s
health, and particularly, Black men’s health. Connell (1995) tells us race relations are an
integral part of the dynamic between masculinities. In a White supremacist context,
Black masculinities play symbolic roles for White gender construction. For example,
Black athletes become exemplars of masculine toughness, while the fantasy figure of the
Black rapist plays an important role in sexual politics among Whites. Consider Kobe
Bryant, a superstar athlete with the Los Angeles Lakers with multi-million dollar
advertising contracts accused of raping a young, White woman at a hotel in Colorado.
He later settled the case out of court explaining that the sexual encounter was consensual.
Another example is Mike Tyson, a heavyweight boxing champion accused and convicted
of raping a young, Black woman in his hotel room at the pinnacle of his career. Tyson
served a prison term, but like Bryant, claimed the sexual contact was consensual. Race

informs self- and societal perceptions of masculinity and male sexuality. Images of the

18

Black male body—in athletics, in prison, in the media, in music videos, in everyday
activities—are often presented in a hyper-masculine, hyper-sexualized manner.
Conversely, hegemonic masculinity among Whites sustains the institutional oppression
and physical terror that have framed the making of masculinities in Black communities
(Connell 1995). Staples (1982) argues that massive unemployment powerfully interacts
with institutional racism in the shaping of Black masculinity. Although some Black
athletes may be exemplars for hegemonic masculinity, the fame and wealth of the
individual does not trickle down to yield social authority to Black men in general. In
short, for marginalized men, the claim to power in hegemonic masculinity is constantly
negated (Courtenay 2000a). Courtenay (2000a) found that African American men more
strongly endorse traditional masculinity than non-African American men; and among
African American men, endorsement of dominant norms of masculinity is stronger for
both younger and nonprofessional men than it is for older, professional men. This
difference could speak to the desire by younger, nonprofessional Black men to acquire
control by exerting their “manhood” when they feel that they have control over very
little.
Sexuality

Historically, Black men have been subordinated to White men. Politically,
economically and institutionally they have been 2'“I class citizens, 3/5 of a man, and
primarily non-starters (Winant 2001; Smith 1999; Marable 2001). Claims of manhood
and masculinity have been denied to Black men. Black men were not men, they were
savages, beasts, not human (Well-Barnett 2002; West 1996; Winant 2001). The judge

6

ruling in the Dred Scott Decision in 1857 put it plainly— ‘Black people have no rights

19

which the White man is bound to respect.” Always present in these assertions is
denigration of Black male sexuality. Weeks et al. (1996) define sexuality as “the
complex of values, concepts, and behaviors that includes sexual practices, a group’s or an
individual’s understanding of what constitutes acceptable and desirable sexual activity,
and sexual identity” (p. 341). Saint-Aubin (2002) states nineteenth century scientists
would stipulate then set out to confirm that Black men were like lower animals when it
came to sexual appetite, morality, and sexual anatomy. He continues, “because the
Negro man, in counter distinction to his White superior, ceased to develop further
mentally beyond puberty, he became a slave to his sexual passions” (2002:255).

Sabo (2000) asserts that many cultures equate masculinity with sexual virility.
Sexuality is an essential aspect of our lives as human beings and is tied with living,
vitality, and sensuality (Wilmoth 1998). Come] West (1996) contends, “Americans are
obsessed with sex and fearful of Black sexuality.” West maintains that Black sexuality is
a form of Black power over which Whites have little control. He explains that Black
sexuality as Black power puts Black agency at center stage with no White presence at all
and claims this can be uncomfortable for White people accustomed to being the
custodians of power (West 1996). Saint-Aubin (2002) goes on to declare:

Europeans had been obsessed with the sexuality of dark men (and women); the

myth of the peculiar anatomy of Black bodies and the fantasy of the

hypersexuality of Black men can be found also in Aristotle, who believed that
men of all races, but especially Afiican men, were hypersexual. He believed
further that since the African male was ape-like, if not true ape, he shared the

ape’s wild and wanton sexual appetites, activities, and preferences. The dark-

20

skinned man, according to Aristotle, also shared the ape’s physiology since both

were capable of a perpetually erect penis (p.250).
Sexuality is not limited to, or isolated as, intimate, private, and personal interactions
between and among men and women in society. It, like our bodies, is something all
humans share and as such, it requires analysis that cuts across race, gender, and socio-
economic lines. It is wrought with political, historical, and economic processes.
Race and Racism

In this study, I use the term “race,” defined as socially constructed groupings with
crucial significance in US. social structure, history, and politics. Ethnicity is commonly
understood as “social differentiation derived from cultural criteria such as a shared
history, a common place of origin, language, dress, food preferences, and values that
engender a sense of exclusiveness and self-awareness of membership in a distinct social
group” (Sokolovsky 1990). Ethnicity has become the poster-child concept of a post-
racial, color—blind worldview. Arguments are made that the race-concept is atavistic and
outmoded, a relic of the past (Winant 2001). “Race” talk currently presents itself as
multicultural, egalitarian, respectful of cultural difference, and above all, humane. This
post-racial view is at odds with what Winant cogently argues in The World is A Ghetto.
and that is: “the race-concept is anything but obsolete and that its significance is not
declining. We are not ‘beyond race.”’ I contend that Winant is correct in his assessment
of the continuing significance of race. I choose to use race to discuss socio-cultural
variation because it is a powerful and complex analytical tool to examine health care in

the United States, and specifically, the state of health for Afiican Americans.

21

Race has been key in global politics and culture for half a millennium. It
continues to signify and structure social life not only experientially and locally, but also
nationally and globally (Winant 2001; Marable 2002; West 1999; Dyson 2003). Winant
goes even further when he proclaims

race has shaped the modern economy and nation-state. It has permeated all

available social identities, cultural forms, and systems of signification. Infinitely

incarnated in institution and personality, etched on the human body, racial
phenomena affect the thought, experience, and accomplishments of human
individuals and collectivities in many familiar ways, and in a host of unconscious

patterns as well (2001 :1)

Although race has no basis in biology, it remains a fundamental social fact. Race is
present everywhere: it is evident in the distribution of resources and power, and in the
desires and fears of individuals from Canada to Zimbabwe (Winant 2001). To identify
humans by their race, to inscribe race upon their bodies, was to locate them, to subject
them, in the emerging world order (Winant 2001; West 1994, 1999).

In the United States, ethnicity has replaced race in most social science analysis
(Winant 2001; Marable 2002; West 1999; Pinderhughes 1989). I find that ethnicity lacks
power and has an aura that it somehow releases us from racism. Holmes-Rovner asserts
that rejecting the use of the term race is an “academic distraction” which cuts off
discussion of the pervasive nature of racism in our culture (personal communication,
March 2005). Race is difficult because it necessitates a discussion about resources and
power. It has served as America’s version of a caste system, while racism has been the

ideology that justified it (Smedley 1999). Even though Jim Crow laws and “Whites

22

only” signs have been removed, race remains the “American dilemma” (Winant 2001;
Smith 1999). As Smith (1999:6) asserts “on the one hand Americans value equal
opportunity, and on the other hand, race continues to limit the equality of opportunity.”
The dissonance Americans have about race parallels the discord Americans feel about
class. There is a conflict between the rhetoric of equal opportunity on a level playing
field and actually eliminating differences in life chances (Smith 1999; Winant 2001).
During slavery, reconstruction, and up until recent history, Black men were
lynched for any behavior that the White majority construed as being inappropriate
(Wells-Barnett 2002—orig. pub. 1892). Inappropriate behavior included anything from
refusing to walk on the other side of the street when approached by a White woman, to
looking at a White woman. Lynching an individual involved hanging and oftentimes
cutting the genitalia of the presumed offender. This would suggest that Black men’s
genitalia (and what they may have secretly wanted to do with them) were a threat to the
“natur ” order (Wells-Barnett 2002). Lynching of the Black male body was not only
about teaching a Black man a lesson about his place in the world imagined by a White
majority, but the severing of the genitalia was the means to strip him of his manhood
even in death (Carby 1998). Although the Black male body has been feared, it has also
been inscribed with the myth of sexual prowess (Madhubuti 1991; Hutchinson 1994).
This notion of a powerful, insatiable, sexual body speaks to the complexity of this
project. I propose that Black men have internalized some of the myth surrounding their
masculinity and sexuality. History, politics, economics, and power relations have
interacted to produce a collective experience. Moreover, historical context shapes social

behavior, and may influence health care decision-making behavior. The self-perception

23

of being a strong, sexual body may hold as men age and may color decisions aging men
make about health care.
Health Disparities

Health care directly affects not just lifestyle, but life itself. Health care can
provide the information we need to manage chronic illness, prevent premature death,
ameliorate pain, and restore function (Smith 1999). There are three aspects of health care
that makes it different from other consumer products and services. First, health care may
operate as a mechanism of social control which contributes to social stability (Singer
1990; Baer 1982; Morsy 1996; Scheper-Hughes and Lock 1996; Smith 1999; Foucault
1979). Smith (1999:5) asserts “health care is organized, and that organization sends
powerful symbolic messages that help define our national identity.” Health care, like the
educational system, the criminal justice system, religion, and the military operate for
society to maintain itself as a collective unit (Smith 1999: Singer 1990; Illich 1976).
These systems work to ensure a necessary degree of social cohesion, and the fact that
these very systems are in a state of disrepute and disrepair in the US is fiightening.

Health care as it exists in the US. encourages self-discipline, self-monitoring, and
personal responsibility for ill health. The institutions of healthcare require that
individuals remain vigilant in guarding and maintaining good health because poor health
indicates a lack of control. Moreover, consumers of health care services and products are
encouraged to consume in larger and larger amounts, which reinforces the idea that
individuals are the primary agents of positive health care outcomes. Second, health care
is in part a public good; meaning the public in general benefits fiom a healthy citizenry,

and benefits cannot be restricted simply to the person receiving services (Smith 1999).

24

The boundary here, between public and private, is fuzzy especially considering that
health care is primarily privatized and distributed via managed care corporations. Smith
further explains that early in the 20th century, health services to Blacks were more about
protecting Whites from TB and other infectious diseases than about protecting the health
of Blacks. Lastly, health care is a moral and ethical matter. Lack of access to adequate
care can limit an individual’s normal range of opportunities and raises questions of
fairness and social justice (Smith 1999; Singer 1990). Consider the following health
statistics: 1) Afi'ican Americans are at higher risk for morbidity and mortality than Whites
(Dressler 1993; US Department of Health and Human Services Chartbook 2004), 2) the
infant mortality rate for Blacks is double that of Whites, and 14 percent of Blacks are
considered to be in poor health compared to 8 percent of Whites (US DHHS Chartbook
2004), and 3) Afiican American men, in particular, have a 20 percent higher incidence,
and a 40 percent higher death rate from all cancers combined than White men
(www.cancerong, 2006). Several reasons are posited for the differences, such as lack of
insurance, communication barriers, and low income. When Blacks (and other non-White
groups) are insured at comparable levels to Whites, however, studies show that they still
tend to receive a lower quality of health care when treated for the same conditions
(www.cancer.org, 2006). Dressler (1993) explains that a White person admitted for chest
pain and a diagnosis of coronary artery disease is more likely to receive sophisticated
diagnostic procedures such as arteriography and coronary artery bypass (this association
persists after controlling for income, insurance class, disease severity, and other risk
factors). This illustrates that differential treatment in health care settings is not reduced

to inability to pay or lack of insurance, but race has a powerful and complex role in

25

determining access and quality of care. In short, Black bodies bear a disproportionate
burden of health care inequities.
Whiteness

There is a tendency for Whites to see themselves and the world as race-neutral
under a widespread assumption that racial justice has largely been achieved (Winant
2001). These perceptions are problematic because addressing the dilemmas of race and
racism becomes increasingly difficult when we adopt “color-blind” policies or institute
multiculturalist approaches that seek to celebrate diversity and preserve cultural
differences (Winant 2001). McIntosh (1992:71) contends, “Whites are carefully taught
not to recognize White privilege.” White privilege is the notion that White subjects
amass advantages by virtue of being constructed as Whites (Leonardo 2004). However,
it is not enough to talk about White skin privilege without a complementary discussion of
White supremacy or White racial domination. Leonardo (2004) argues:

In order for White racial hegemony to saturate everydayilife, it has to be secured

by a process of domination, or those acts, decisions, and policies that White

subjects perpetrate on people of color (p. 137).
A substantive racial analysis cannot begin and end with White privilege as some
“mysterious accumulation of unearned advantage” (Leonardo 2004: 1 50). As long as
Whites feel comfortable with racial analyses that forego critical discussions of White
supremacy and White domination, it is unlikely that there will be any solidarity between
Whites and non-Whites (Leonardo 2004; Winant 2001). The analysis presented here

strongly suggests that contemporary racial politics remain unstable and ripe with conflict.

26

Aging

Aging is commonly associated with illness and physical decline. These negative
connotations of aging have a long history and retain a stronghold in the diagnostic
schema of Western medicine (Sokolovsky 1990). There is no general consensus on what
aging is, and the more we try to understand it the more obscure the notion becomes.

Early studies of human development began with childhood and ended with the finished
product of an adult (Sokolovsky 1990; Bond 1990; Jamieson et al. 1997). Gerontology,
the study of aging, emerged, with the Great Depression and the increased number of older
adults, to focus on the processes and problems of later life (Fry 1990). Current
theoretical gerontology defines aging as “the normal, inherent, irreversible, and
progressive deterioration of biological function, terminating in death” (Esposito 1987).
Entrance into old age does not depend on one event, for example, retirement or a 65‘“
birthday. Nor does becoming old make some a completely new being. Aging occurs as a
biological and a social process. Chronology (time elapsed since birth) as a marker of
biological age is problematic because it does not take into account genetic and
environmental influences. It is even less constructive for social aging especially where
factors such as gender, race, and class produce even more diversity alongside the choices
people make as they enter into and live through adulthood (Fry 1990).

The life course perspective is not a theoretical framework. It is, as stated
previously, a model, a map or an orientation to understanding aging. Jamieson and
Victor (1997) identify three points of particular significance for the life course
perspective: 1) it is an attempt to get beyond age-based definitions, to focus on movement

through the life course rather than rely on terms like “old age” and the “last stages of

27

life”; 2) it proposes an association between earlier and later stages of the life course; and
3) it places individual aging experience in the context of changing social structures.
Aging in the 21"t century will be strongly influenced by the pattern of social stratification,
namely class, gender, and race/ethnicity. Class is defined by a group’s relationship to the
economic structure of society (Bond and Coleman 1990) and class is a stronger predictor
of lifestyle than age. In general, men tend to die much sooner than women, and if you
belong to a particular racial/ethnic group you are much more likely to bear a
disproportionate share of the poverty burden. Note the following: Between 1984 and
2001 , the median net worth of households headed by White people age 65 and over
increased 81 percent from $113,400 to $205,000. The median net worth of households
headed by Black people age 65 and over increased 60 percent from $25,600 to $41,000.
Although the rate of growth of wealth between 1984 and 2001 has been substantial for
both older Black households and older White households, large differences continue to
exist, with the median net worth of older White households ($205,000) five times larger
than older Black households ($41,000). Race and ethnicity are related to poverty among
the older population. In 2002, older non-Hispanic Whites were far less likely than older
Blacks and older Hispanics to be living in poverty—about 8 percent compared with 24
percent of older Blacks and 21 percent of older Hispanics (there is not a statistically
significant difference between the latter two groups). Older non-Hispanic White and
Black women had higher poverty rates than their male counterparts
(www.agingstats.go_v). Zelkovitz (1990) informs us that rather than explicitly
challenging and seeking significant long-term change in existing social inequities,

American aging ideology has used a rhetoric of “helping” the elderly, encouraging “more

28

respect” for them, “cushioning” them from the worst socioeconomic problems, and
encouraging them to keep “contributing to society.”
Operational and Conceptual Definition of Social Class

Social class, or class, is a much disputed concept, and in many instances remains
undefined. The concept is especially difficult in the US. since there is a belief, an
ideology, if you will, of egalitarianism and equal opportunity for all American citizens
and belief in upward social mobility as available to all. Scholars generally propose an
array of diagnostic features for class identification such as income, education, residence,
occupation and lifestyle (Smedley 1999; Gilbert 1998). Income is a primary
characteristic of class, which leads to arbitrary limits for such classifications as lower
class, middle class, and upper class based on income and lifestyle. Although these
categories are inexact and subject to debate, most people, according to Smedley
(1999:220) have a “general sense of class differences in relation to the ability to acquire
material comforts and luxury goods and to make the sociopolitical system work to one’s
advantage.”

From a Marxist perspective, social classes are groups standing in different
relationships to the mode of production. Marx’s perspective interprets the formation of
classes historically as a product of the introduction of private property, the development
of industrialization, and the grth of capitalism (Smedley 1999; Gilbert 1998). For
Marx, there are only two social classes in industrial capitalism: the owners and managers
of capital, as distinct from the exploited laboring class who produce the products whose

surplus value is seized by the owners of capital (Smedley 1999; Gilbert 1998; Dubennan

29

1976). According to Marx, shared economic class and lifestyle were not enough to create
a social class. Duberrnan (1976) suggests

there must also be a sense of “we-ness,” of unity, a psychological feeling of

belonging together which will promote the desire for community and the

knowledge of common interests. This means that to really constitute a class, an
aggregate of people within the same economic stratum who recognize their
sameness of condition and interest must feel themselves as separate from other

classes, even as hostile to them (p.23).

In Marx’s paradigm, race and racism arose as products of the colonial stage in the
development of capitalism and the social divisions accompanying conquest and
imperialism. Therefore, dominated racial groups like Blacks and Indians came to
represent special segments of the working class, subject to super-exploitation and kept
poor and powerless (Smedley 1999). Marxists would argue that capitalists created and
used racism to keep the entire working class “divided, weak, and exploitable” (Smedley
1999:220). Race, seen as an aspect of class and class conflict, plays a subordinate and
limited role in the social system and draws its meaning from the form and material
conditions of the economy.

Class analysis as a tool accounting for race and racism is inadequate and fails to
consider the complexities and realities introduced by the racial worldview (Smedley
1999; Winant 2001). It ignores or obfuscates the material circumstances and special
interests of the White working class, which has for more than a century benefited fi'om
diminished competition from other racial groups who were barred, by custom and law,

from jobs and positions available only to Whites (Smedley 1999). Smedley contends:

30

by stressing the common exploitation that all working-class people experience at
the hands of the capitalists, class-based analysis precludes, indeed exempts, White
working-class culpability in the preservation and continuity of racism. It ignores,
and sometimes, denies, an important reality: that the White working-class shares
the same exploitative, self-aggrandizing, and oppressive capitalist ethos as the
bourgeoisie, and essentially the same ideology (1999:220).
A regular feature of life in the South for Blacks was being subjected to humiliating and
degrading acts from working-class Whites on a daily basis. This was part of the power
even poor Whites held over Blacks as “a consequence of the established racial ranking
and associated habits of denigration” (Smedley 1999:220). Class analyses are limited in
explaining the power of race in eliciting a sense of vast difference. Class barriers can be
transcended, race barriers cannot. As Chris Rock has stated in his stand-up routine “there
is nothing a White man with a nickel hates more, and that’s a nigger with a dime.” Class,

alone, cannot explain the vast difference illustrated here (Winant 2001; Marable 2002).

31

B. THEORETICAL POINTS OF DEPARTURE IN MEDICAL

ANTHROPOLOGY

Critical Interpretive Medical Anthropology

This research elaborates the complexity of the macro-context (such as race,
Whiteness, social class, historical aspects of being Black in America, and health care and
its associated disparities in the US) surrounding health decisions of men as a way to
refine the discussion of the micro-context (individual perceptions about decision-making,
aging, masculinity, and sexuality). These frameworks guide my questions surrounding
aging men and their desire to maintain a sexual self when making decisions regarding
treatment for benign prostatic hyperplasia. The analytic framework 1 apply is guided by a
critical-interpretive medical anthropological approach paying special attention to the
body within a particular historical and political-economic context.

Scheper-Hughes and Lock (1986) argue that a critical-interpretive medical
anthropology describes the culturally constructed conceptions about the body (conscious
and unconscious) and associated narratives and then shows the social, political, and
individual uses to which these conceptions are applied in practice. Scheper—Hughes and
Lock (1986) charge that there has been an “endless pursuit of medical and psychiatric
exotica characteristic of conventional ethnomedical case studies.” As a result, the focus
on ritual and symbolic elements appear independent of political-economic context
(Singer 1990). The failure to locate microlevel behaviors, beliefs and meaning systems
within a larger political structural framework was deemed socioculturalism by Onage

(Singer 1990).

32

Singer (1989) argues that conventional medical anthropology failed in its
handling of the concept of social relations. Conventional medical anthropology defined it
as the character of interpersonal bonds between particular individuals or small groups.
However, Singer asserts that social relations are best characterized as “the structuring
configuration of power alignments that pervades every arena of social life and is
embodied in all institutions in society.” He further states:

The character of doctor-patient interaction is structured by a wider field of class

and other relations embedded within, but not always directly visible, from the

clinical setting. Failure to locate personal relations, face-to-face interactions,
social networks, social support systems, and other ties of a similar order within
the encompassing and determinant set of social relations has been a significant

weakness of mainstream medical anthropology (1989:1194).

The problem of medicalization of medical anthropology has highlighted the professional
roles of medical anthropologists in biomedicine and as developers of analytic concepts
that reinforce the medical monopoly over human suffering (Singer 1989, 1990). Singer
argues that medicine seduces medical anthropologists with its claims to efficacy, high
social class, political legitimacy, and power in society. Taussig suggests that medical
anthropology assists medicine in the appropriation of knowledge that makes “the science
of human management all the more powerful and coercive” (1980:12)

Morsy advocates a political economy of health approach in medical anthropology
(PEMA). A political economy approach embeds culture in historically delineated

political-economic contexts. PEMA analysis situates medical anthropological analysis in

33

the context of three processes—development, the making social of disease, and in the
more general concepts of anthropological analysis (Morsy 1996).
Waitzkin (1981) informs us that interest in the social origins of disease extends to
previous work by Engels, Virchow, and Allende. Engels proclaimed that for working-
class people, the organization and process of economic production was the root cause of
illness and early death. For Virchow, the causes of illness and early death lay in the
unequal distribution and consumption of social resources. In Virchow’s estimation, the
primary sources of illness and early death were poverty, unemployment, cultural and
educational deficits, political disenfranchisement, and inadequate medical facilities and
personnel. Allende attributed the social origins of illness to underdevelopment and
imperialism. This brief synopsis shows that the social origins of disease reside in a
framework of multifactorial causation (Waitzkin 1981):
These writings conveyed a vision of multiple social structures and processes
impinging on the individual. Disease was not the straightforward outcome of an
infectious agent or pathophysiologic disturbance. Instead, a variety of
problems—including malnutrition, economic insecurity, occupational risks, bad
housing, and lack of political power—created an underlying predisposition to
disease and death (p.98).
Baer et al. (1986:95) informs us that a critical approach must define health as “access to
and control over the basic material and non-material resources that sustain and promote
life at a high level of satisfaction.”
To address the shortcomings in conventional medical anthropology, there has been an

emergence of a critical trend in the field. The critical trend in medical anthropology is

34

increasingly referred to as critical medical anthropology (CMA). CMA “understands
health issues in light of the larger political and economic forces that pattern interpersonal
relationships, shape social behavior, generate social meanings, and condition collective
experience” (Singer 1990). Even though this approach has a priority to lay bare global
and national processes and structures, it is also attentive to an exploration of microlevel
activities and patterns, including their effect on the microlevel. This may seem counter to
what was stated earlier that one of the criticisms of conventional medical anthropology
was its circumscription of the microlevel, especially in respect to ritual and symbol.
Singer (1990) argues “it is the view of critical anthropology that the microlevel is
embedded in the macrolevel, while the macrolevel is the embodiment of the microlevel,
but is not reducible to it.” In short, you cannot propose to analyze one without the
other—neither level is the essential level of social reality. Critical medical anthropology
works to clarify the manner, form and degree to which macroprocesses are manifested at
the microlevel (Singer 1990). F rankenberg (1988) states that in order to examine on-the-
ground social performance we must develop a micro-political economy approach ——an
approach well suited for the examination of the physician-patient interaction and shared
decision-making.

Scheper-Hughes and Lock (1996) advocate a move toward a critical-interpretive
medical anthropology. They assert that the ever-present constraining and irreducible fact
special to medical anthropology is the sentient human body. The task of a critical-
interpretive medical anthropology is, first to describe the

culturally constructed variety of metaphorical conceptions (conscious and

unconscious) about the body and associated narratives and then to show the

35

social, political, and individual uses to which these conceptions are applied in
practice. By this approach, medical knowledge is not conceived of as
autonomous but is rooted in and continually modified by practice and social and
political change. Medical knowledge is, of course, also constrained (but not
determined) by the structure and functioning of the human body. A medical
anthropologist therefore attempts to explore the notion of “embodied
personhood”: the relationship of cultural beliefs and practices in connection with
health and illness to the sentient human body (p. 44).
Scheper-Hughes and Lock (1996) consider relations among three bodies. First, the
individual body can be understood as the lived experience of the body-self. Second, the
social body refers to the representation of the body as a natural symbol used to think
about nature, society, and culture. “The body in health offers a model of organic
wholeness; the body in sickness offers a model of social disharmony, conflict, and
disintegration. Reciprocally, society in “sickness” and in “health” offers a model for
understanding the body” (p. 45). Lastly, the body politic refers to the regulation,
surveillance, and control of bodies (individual and collective) in reproduction, sexuality,
work, leisure, and sickness. These authors contend the stability of the body politic lies in
its ability to regulate populations (the social body) and to discipline individual bodies.
Michel Foucault has done extensive work about the regulation, control, and surveillance
of individual and social bodies in complex, industrialized societies.
Scheper-Hughes and Lock (1986, 1996) explain that as we explore the illness
experience from an integrated critical perspective—humans as simultaneously physical,

social, economic, and symbolic beings—we remain ensnared with the separation of mind

36

and body, the Cartesian dualism. So trapped, medical anthropology lacks the vocabulary
to capture mind-body-society interactions and thus, left to employ hyphens to explain the
“disconnectedness” of our thoughts. Relying on bio-social and psycho-somatic to
express, and rather feebly, the many ways in which the “mind speaks through the body
and the ways in which society is inscribed on the expectant canvas of our flesh and
bones, blood and guts” (Scheper-Hughes and Lock 1986: 137).

A critical-interpretive medical anthropology extends beyond a culturally sensitive
presentation to expose the contingency of power and knowledge in both their creation of
and relationship to the culturally constructed individual body (Scheper-Hughes and Lock
1996). Scheper-Hughes and Lock (1996) identify the individual body as the most
immediate, proximate terrain where social truths and social contradictions are played out,
as well as the site of personal and social resistance, creativity, and struggle. Our accounts
and interpretations of our bodies are historically and socially contingent, and they are not
protected from broader social transformations (N ettleton and watson 1998; Williams and
Bendelow 1998). In short, the body is multi-vocal, and the stage on which emotional and
social distress is expressed. In the following section I show how this bodily expression is
manifested in a pilot study I conducted in 2000.

The Body

In 2000, I conducted a pilot study in Lansing on parenting practices of Black
women. I found that Black women worked to make sure their sons were not in
environments or situations that were unsafe or endangering their freedom. Participants
talked about being afraid for their sons when driving nice cars because they may be

perceived as engaging in criminal activity and pulled over by police. Black bodies and

37

Black skin is always visible and interactions with other bodies occur within particular
political, economic, and historical contexts. The ideas expressed in the pilot study inform
and open the discussion on how White and Black male bodies may be perceived
differently by the research participants and others. i

There is a notion of the taken-for-grantedness of the body. On some level we are
conscious of our bodies, but we do not tell our bodies to put one leg in front of the other
or to breathe through our nose in order to smell. The assumption is that we are not aware
of our bodies until we experience some sort of dysfunction, and thus, the body is absent
(Schilling 1993; Williams and Bendelow 1998). I see the situation as more complex for
several reasons. First, as noted, the way we handle our bodies in social situations is
important to our self and identity. Everyday living, being-in-the-world, makes us aware
of our bodies and our relations with other bodies. Second, bodies are central in
understanding health and change over the life course. Aging, as both a biological and
social process, heightens our awareness and experience of our bodies. Third, the taken-
for-grantedness, the absence of the body is an inadequate analysis of the situation for
older Black men. The black male body is never taken for granted. Black people, and
Black men in particular, are constantly under surveillance. For example, racial profiling,
being followed in department stores, White women being afraid in elevators and on
sidewalks when Black men are present, all this makes it impossible for a Black male
body to be absent. Again, black bodies and black skin is always visible and interactions
with other bodies occur within particular, political, economic, and historical contexts.
Black men, who have lived through Jim Crow segregation, and the Civil Rights

Movement and have been told the stories of their parents and grandparents about slavery

38

and lynching, have embodied experience that cannot be taken-for-granted. The lived
body has a history and thus, cannot be absent (Fanon 1967).

In contrast, White skinned bodies remain invisible, not because they are nobodies
but because it is expected that they will and can be everywhere. They are appropriate and
acceptable. McIntosh (1992) asserts that Whites fail to recognize White privilege, and
even more, White racial domination. As indicated above the Black male body is never
taken-for-granted, but perhaps this is not the case for the White male body. There is an
expectation that White bodies, and White male bodies in particular, will take up certain
space—the White House, Supreme Court, corporate boardrooms, and a host of other
spaces. Unlike Black male bodies, White male bodies are less likely to be assigned
negative attributes. Even when White men are engaged in corrupt governments,
disastrous wars, failing healthcare, and corporate malfeasance there remains an
underlying acceptance that White men are good leaders. Interestingly, when these
situations occur, an individual is at fault, but usually that individual is not described as a
“White male” (personal communication, Ann V. Millard, October 2007). Such
acceptance is reinforced by the myth of meritocracy in the United States—that we all
play on an equal level field and merit is rewarded.

Leonardo (2004) contends, “despite the fact that White racial domination
precedes us, Whites daily recreate it on both the individual and institutional level”
(p.139). White domination has been forged historically from a patterned and enduring
treatment of social groups (Leonardo 2004). Recognition of such a patterned relationship
of domination may be difficult for Whites to accept, and may be especially difficult for

White men.

39

In sum, in order to understand the contextual factors older men are likely to
consider before answering the call to participate in healthcare decision-making, it is
prudent to examine the macrolevel features such as race, Whiteness, social class, and
health disparities. Additionally, the microlevel issues such as men’s definitions of
masculinity and sexuality must be elaborated in order to examine how men engage in

healthcare decision-making surrounding BPH treatment.

40

CHAPTER 3 METHODS
A. Health Information for Patient Decision-Making (HIPD)

This dissertation research draws upon the data from a study testing the effect on
men’s decision-making after exposure to a shared decision-making educational
videotape. The overall objective of the Health Information for Patient Decision Making
(HIPD) study was to examine how a racially and educationally diverse sample of men
interpret and use information in reaching informed decisions about BPH treatment in
response to a previously developed and tested educational videotape produced by the
Foundation for Informed Decision Making (Rovner et al. 2004). HIPD interviewed 188
men using a 2 (education level) x 2 (race) design (the goal was to obtain an equal number
of participants in each cell). Men aged 50 and older who self-identified as Afiican
American/Black or European American/White were recruited from community
organizations to participate. HIPD focused on older men because they were likely to be
experiencing BPH symptoms (gradually increasing difficulty urinating causing
wakefulness at night and other functional problems) and able to make a realistic decision
about BPH treatment. The men viewed a videotape on BPH treatment and side effects
and although some questions were structured, most were open-ended to allow participants
to react and respond to the video when desired and in their own words. Men who
matched the participants by race and approximate age conducted interviews lasting 2 to 3
hours. The Michigan State University human subjects Institutional Review Board

approved all study materials and procedures on April 26, 2006 IRB# 06-310.

41

B. Research Questions

How the possibility of treatment-induced sexual dysfunction impacts men’s
decision-making about benign prostatic hyperplasia (BPH) treatment has not been well
studied. The purpose of this dissertation research is to examine how the possibility of
sexual dysfunction when presented as a side effect of treatment is incorporated in the
BPH treatment decision-making of older Black and White American men. The men in
this project were the appropriate age to experience symptoms of BPH and thus ready to
make a decision regarding its treatment.
This dissertation addresses the following questions: 1) How does concern about
possible sexual dysfunction affect decision-making about benign prostatic
hyperplasia (BPH) treatment among men aged 50 years and older? 2) What factors
trigger concern about sexual dysfunction among Black and White men? 3) In what
way, if any, do education, social class, and race influence decision-making of men?
4) How do men define masculinity and male sexuality? Is there a difference in
definitions of masculinity and male sexuality between Black and White men? 5)
How do these definitions shape health care decision-making for men? This research
considers the decisions men make about BPH treatment based on potential side effects of
treatment, as well as how those decisions may be influenced by ideas of aging, male
sexuality and masculinity.
C. Study Location

This dissertation research is a secondary data analysis of the Health Information
and Patient Decision-Making Project (HIPD) conducted in Greater Lansing, Michigan

September 2000- July 2003. Lansing is the capital and the sixth largest city in the state.

42

Lansing is located in Ingham County, but a small section of the city extends into Eaton
County. Based on the 2000 Census, Lansing’s total population was 119,128 people,
77,766 (65.3%) were White, 26,095 (21.9%) were Black, 11, 886 (10%) 11,886 were
Latino, and the remaining approximately three percent were American Indian, Alaska
Native, Asian, Native Hawaiian and Other Pacific Islander.
City Brief

Greater Lansing, locally referred to as “Mid-Michigan,” is an important center of
educational, governmental, business, high-tech manufacturing, and cultural institutions
including three medical schools (two human medicine and one veterinary), two nursing
schools, two law schools, a Big Ten Conference university (Michigan State), the state
capital, the state Supreme Court and Court of Appeals, 3 federal court, the Library of
Michigan and Historical Center, and headquarters of four national insurance companies.
On an historical note, Michigan was a destination for the Underground Railroad
indicating an historical presence of Black people in the state, which may suggest more
openness to the Black population. Malcolm X (born Malcolm Little) and his family
lived in Lansing where their home was burned down, and two years later, his father’s
body (Earl Little was an outspoken Baptist minister and supporter of Black Nationalist
leader Marcus Garvey) was found lying across the city’s trolley tracks. The policed ruled
both incidents as accidents. A plaque now marks the site of what was once his home in
Lansing. The Black autoworkers and state employees living middle-class lives were
important in the community. There was a gentleman in the study that was the first Black

person to work for GM in Lansing, effectively breaking the “color line.”

43

Socioeconomic Brief

The median age for the residents of Lansing was 34 years old with 24 to 26
percent under 18 years of age, 22 to 25 percent between the ages of 45 and 64, and 10 to
11 percent aged 65 and older (American Community Survey, US. Census Bureau 2000-
2003). Between 2000 and 2003, 85-90 percent of people aged 25 years and older had
graduated from high school, and 28-31 percent of them had a bachelor’s degree. For
residents aged 16-19 years of age, the dropout, not enrolled, and not graduated from high
school rates varied from 2 to 11 percent fluctuating from year to year. For the employed
population aged 16 years and older, the leading industries in Lansing were Educational,
health, and social services and manufacturing, both industries remaining stable at 26 and
14 percent respectively. These numbers reflect the fact that the Greater Lansing area
primary employers are state government, General Motors and Oldsmobile automotive
plants, and Michigan State University. The men in the study were employed in these
industries, and their occupations ranged from professors to janitors. The most common
occupations in Lansing overall were management, professional, and related occupations
ranging from 33 to 39 percent; sales and office occupations ranging fi'om 25 to 28
percent, and other occupations included transportation, construction, and maintenance.
Approximately five to six percent of the working population was self-employed. For the
study years, the median income of households increased from 41,000 to 47,000 dollars
(ACS, US Census Bureau, 2000-2003). Unfortunately, not all of Lansing’s households
saw this increase as 11 to 12 percent of people lived in poverty. Ten to 12 percent of
related children under the age of 18 were below the poverty level, compared with 2 to 7

percent 65 years old and older. Over the course of the study there was a marked decline

44

in the percentage of female-headed households with incomes below the poverty level
from 30 percent to 17 percent. Such a marked decline probably reflects Michigan’s
stringent enforcement of welfare-to-work programs.
Current Outlook

At the time of the study, GM was still a primary employer. Currently, GM has
closed 2 plants, and those facilities are being demolished for scrap. Michigan has the
highest rate of unemployment (7.1 percent) in the United States (http://www.wilx.com)
and this number is a decrease from 7.4% in December 2007. The state legislature barely
diverted a state shutdown and employee layoffs due to budget shortfalls. With the
downturn in the automotive industry, and the state in a budget crunch, there is a strong
desire and need to change Michigan’s business base. Governor Granholm is advocating a
move to intelligent businesses and entrepreneurship and developing green technologies.
Michigan is losing population due to the economic problems in the state with a recently
reported loss of 0.3 percent or 30, 000 people in the last 2 years (Lansing State Journal
Friday March 21, 2008). Additionally, there is a push to keep young, college-educated
people in the state to support the grth of intelligent industries. This has prompted the
“Cool Cities” initiative to make local, urban areas more attractive to young people. Also,
Granholm has introduced legislation to raise the age at which an individual would be
allowed to drop out of school to 18 years. Some would argue that these measures are “too
little, too late” considering Detroit’s 24.9 percent graduation rate, not drop-out rate, but
graduation rate! (http://www.wilx.com).

Further signs of Michigan’s depressed outlook in general, and Lansing’s in

particular, is the planned restructuring of Lansing’s school district. For the past 5 years,

45

Lansing’s three High Schools have failed to meet the No Child Left Behind criteria. As a
result, the Superintendent for the Lansing School District has introduced a plan to
restructure the high schools for improved NCLB compliance and success.

Many of the men, both Black and White, in the study worked in the automotive
industry with good salaries and benefits. At the time of the study these men were union
workers when the union was able to maximize their benefits. Lansing autoworkers tend
to be middle-class, with vacation homes, boats, and able to send their children to college.
However, recently, the local United Auto Workers Union (UAW) had a major strike in
Lansing in late 2007 with workers agreeing to reduced benefits and no benefits following
retirement. Along the same vein, GM introduced a buyout package for its workers based
on seniority, which offered little to no health care coverage. GM has cited healthcare
costs as a prime factor in its inability to remain competitive; paying full health benefits to
a cadre of retirees aged 50 and over had become burdensome. American Axle, a major
GM parts supplier has been on strike since February 26, 2008 resulting in GM losses
amounting to $220 million a week (http://www.wilx.com). Recent statistics show that
UAW membership declined to approximately 400,000 in 2007 from 500,000 in 2006.
UAW membership was at its peak in 1979 with a membership of 1.5 million
(http://www.wilx.com). This is the first time membership has dropped below 500,000
since World War II reflecting massive restructuring by the big three automakers. GM,
Ford, Chrysler and their suppliers have cut tens of thousands of j obs in the last few years

making Michigan’s economic outlook bleak.

46

D. Study Sample

The sample population for this study was 188 English speaking, self-identified
Black and White men aged 50 and older, college and non-college educated, and who
lived in the Lansing metropolitan area. College-educated (CE) is defined as having
completed one or more years of college and non-college-educated (N CE) is defined as
having less than one year of college. Trade school was identified as non-college-

educated. Please see sample characteristics in Tables 1, 2, 3, and 4.

Table 1 Number of individuals in each group (n=l88)

 

 

 

 

 

White Af. American Totals
No College 44 37 81
College 56 51 107
Totals 100 88 1 88

 

 

 

 

 

Table 2 Subject Characteristics (n=l88)

 

Characteristic Mea_n Standard Deviation
Age (years) 61.3 7.7

Income (U S$) 33,552 24,481
S-TOFHLA minutes 5.8 1.9
S-TOFHLA number correct 31.6/36 5.6

Number with diagnosed 38/188 --

Prostate problem

Health Insurance (any) 0.91 --

 

S-TOFHLA—Short Test of Functional Health Literacy in Adults
17-minute 36-item fill-in-the blank test)

47

Table 3 Comparisons by Education (n=188)

 

 

College No College
Mean Income $40, 697 $24, 145
Health Insurance 95.3% 86.4%
Mean Age (years) 61.8 60.6

 

Table 4 Comparisons by Race (n=188)

 

 

White Black
Mean Income $33,994 $33,052
Health Insurance 95% 90%

Mean Age (years) 62.1 60.4

The participants were recruited for this study through a number of means,
including, informational posters with return postcards that interested men could send
(postage paid) to the research office. These posters were placed at a number of public
locations such as churches, waiting rooms, union halls, barber shops, etc. Research team
members gave informational presentations to local retiree, church, and union hall groups.
Additionally, a few selected community leaders also helped recruit participants by
networking through interest groups (church groups, master gardener groups, bowling
leagues etc.)

To obtain more information or to see if they qualified to participate in the study,
interested men could either directly contact the research office, or could mail the postage
paid postcard to the research office indicating they wanted to be contacted by the research
office staff. These interested men were initially screened for participation eligibility and
research cell placement based on age (born in year 1951 or earlier), self stated race
(Black or White), prostate health (men were asked if they had ever had prostate cancer or
prostate surgery), and level of education (some college courses, or no college
experience). I spoke to many of the participants over the phone to schedule their

interviews. The men were all very interested and excited about participating in the study.

48

Every male who contacted the research office or who had been contacted by the research
office who met the eligibility standards was given a subject identification number. The
men who did not meet eligibility requirements included age (too young), race (neither
Black nor White), prostate health (personal history of prostate cancer or prostate surgery).
Late in the study, some men inquired about participating in the study after their
appropriate research cell was completed. Therefore, these men were not able to
participate in this study. A total of 210 subject identification numbers were assigned.
One hundred ninety eight men showed up for the study, thus twelve men failed to show
up for their interview. In such cases, personal phone contact was made or a phone
message was left by the research team staff for these “no shows.” If they either did not
want to reschedule or did not return the phone message, the research team staff did not
further attempt to contact them for participation.

The recruitment process started in March 2001 and moved slowly through
October 2001. Increased efforts were made possible through the additionally auxiliary
research team members (individuals who are well-connected in the community through a
number of social and political organizations). Additional snow ball recruitment efforts
were used at the conclusion of the interview when the interviewers asked participants if
they wanted to take informational postage paid postcards to give to other males who
might be interested in participating in the study. These additional efforts increased the
recruitment results. This second wave of recruits included several local area homeless
shelter residents. Follow-up with them to schedule interviews was difficult, but worth the
extra time. The homeless participants did not fail to meet the interviewers at the

scheduled time. Recruitment efforts concluded in April 2002.

49

Incentives

Men were reimbursed $40 for their time (approximately 3 hours actual contact
time, plus transportation). In addition, participants were offered an educational Health
Fair, as a chance to answer any questions they may have about their health, including
prostate conditions. This was offered because interviewers acted as neutral parties during
interviews, and did not offer answers to questions not addressed in the video. The Men’s
Health Fair was held for the participants of the HIPD study in April 2002. The health fair
was used as an incentive in that each participant was told at recruitment time that a men’s
fair would be held only for the subjects finishing the interview process. Thus it also
served as a thank you to those who actually finished the study. All participants and
interviewers received a written invitation to attend the fair. They were told what the
agenda would be; the times each event would occur, and that they would receive a full
lunch, and many door prizes. The fair included information about nutrition, weight
management, blood pressure screening and management, and cancer. There was a
question and answer period with an internist and an urologist. Approximately forty
percent of HIPD study participants attended the health fair. Overall, evaluations were
very positive.

The fair was on a Saturday morning, April 17, 2002 at the Michigan State
University campus. On the day of the fair the participants registered for the fair and
picked up raffle tickets, a conservatively designed t-shirt Men’s Health Fair 2002
embossed across the left breast, and a bag, which had a ball point pen and note paper in it
and was large enough to hold brochures and pamphlets from the exhibit area. Right away,

the men were asked to write a medical question that concerned them on a 3x5 card. These

50

cards were collected by one of the researchers who acted like a moderator in the first
event, which was called “Ask the Doc”. The moderator sorted the cards and used the
most relevant and productive questions asked. In this event two physicians—one an
urologist and the other a general internist—answered the questions to the room full of
attendees. Those two sessions ran from 10:15-11:15. There were more questions than
time to answer all of them. The questions ranged from “How do I know when it is time to
have something done about a prostate problem?” to “What are some of the most
important screening tests I should get (e.g., Colonoscopy, etc.?)” From 11:30-1 pm.
There were exhibit booths from various heath organizations that had health information
for older men and in some cases the men could opt for a reading of their blood pressure,
their height and weight and other medical tests. The final event was a hearty, healthful
buffet lunch and the Head Athletic Trainer at Michigan State University talked and
answered health and sports questions. Throughout the day there were many winners of
door prizes, in fact, every attendee received at least one door prize. For me, and the
participants, it was quite a nice surprise to put the faces with the voices since our only
contact was via telephone. In fact, I had several participants say to me, “I now get to see
who was so nice to me over the phone.”

The Health Fair was very well received by the 24 men in the sample who
participated. For example, the question, “Overall, how likely would you be to recommend
the Men’s Health Fair to a fiiend?” yielded 17 “definitely” responses, 5 “probably”, and 2

did not respond.

51

E. Data

The data consist of 1) coded and transcribed semi-structured interviews between
trained interviewers and participants who watched a patient decision support video about
BPH, 2) surveys of socio-demographic background, and assessment of health literacy.
The Short Test of Functional Health Literacy in Adults (S-TOFHLA) (see Table 2) was
used to measure functional health literacy. The standardized test has a 7-minute time
limit to answer 36 fill-in-the blank items. Scores of 0-1 6 are rated as inadequate health
literacy meaning individuals are incapable of interpreting prescription labels or blood
sugar testing instructions. Scores between 17 and 22 are rated as marginal health literacy,
and scores of 23 to 36 indicated adequate health literacy (Rovner et al. 2004; Baker et al.
1999). According to the developers of the scale, health literacy was strongly correlated
with years of school completed with a significant difference between patients with an 8th
grade education or less and those with education beyond high school. This assessment
guided the dichotomization of the study sample into non-college-educated (high school or
less) and college-educated (college educated or more) (Rovner et al. 2004).
1.1 BPH Videotape: stimulus for discussion

The 47-minute videotape had been extensively field-tested and developed to
present balanced, non-biased information about key BPH treatment options of watchful
waiting, medications, and surgery. A variety of methods were used in the videotape to
communicate benefit and risk information, such as oral reports from the video narrator,
men providing testimonials, and various types of graphs and tables. The interviewer
pressed pause on the videotape following each of five key sections: the introduction,

three separate sections on the three treatment options, and the summary. At each pause

52

of the tape, the participants were asked, “Can you tell me, in your own words, what you
got out of this part of the video?” The videotape is intended as decision support for men
to incorporate their personal values into decision-making about treatment benefit/risk
tradeoffs. Possible sexual side effects of BPH treatment are addressed by the videotape
narrator and in testimonials of men who chose to undergo BPH treatment.

The BPH video used employs a structure that is common to decision aids that
meet the Cochrane review criteria. In the most recent update of the Cochrane Review of
Decision Aids (2004), they are defined as follows:

Decision aids (DAs) were defined as interventions designed to help people make

specific, deliberate choices among options (including the status quo), by

providing information about the options and outcomes relevant to a person's
health status. DAs may or may not also include: information on the clinical
condition; the probabilities of outcomes tailored to personal risk factors; an
explicit values clarification exercise; descriptions of others' experiences; and
guidance in the steps of decision making and communicating with others. The
definition excludes: interventions focused on decisions about lifestyle changes,
hypothetical situations, clinical trial entry, or advanced directives; education
programs not geared to a specific decision; and interventions designed to promote
adherence or to elicit passive informed consent regarding a recommended option.
The most complete of the decision aids in the review are those that use both the minimal
elements of all treatment options, and their related outcomes of mortality and side effects,
and the elements listed as optional in the Cochrane definition: information on the clinical

condition, probabilities of the mortality and side effects outcomes, descriptions of

53

patients’ experiences (personal stories), and advice about reaching a decision and
communicating with doctors to reach a shared decision. What is becoming a standard
format for organizing this information was employed in this video. The program has five
main sections. Section 1 explains BPH as a problem. It shows pictures of the male
anatomy and explains where the prostate is, and how it gets enlarged as men age. In this
section, it is prominently stated by the narrator that BPH is not cancer. The narrator
repeats this fact for emphasis. Then symptoms of BPH are described, and men are
invited to write down their AUA symptom score, and told what number means mild,
moderate, or severe. This writing down of a laboratory test value, and explaining the
cutoffs is a common element of decision aids. The description of symptoms is followed
by video clips of actual patients describing their symptom experience In this first section,
an overview states that there are three possible treatments for BPH: watchful waiting,
surgery (removal of the prostate), and medical therapy. This overview is followed by
three individual sections on the pros and cons of each treatment. Once again, patients
describe their treatment experience, with varying ranges of positive or negative
experience. However, the video’s authors indicate they did not pick extremes of either
positive of negative experience. Finally, a summary section reviews the three options,
and encourages the viewer to talk with his doctor and reach a shared decision about
treatment.

By special arrangement with the video’s authors, the original video, and a second
version that was used to check for “order effects” of presenting information. Version 1
(“forward” condition, the original version) presented information about watchful waiting,

medications, and surgery, in that order. Version 2 (“reverse” condition, the order of

54

surgery is moved up to first) presented information about surgery, medications, and
watchful waiting, in that order. Participants were assigned to view the videotape in either
the forward condition or the reverse condition. For each version of the tape (forward,
reverse), men first viewed an introductory section that briefly highlighted the treatment
options. Next, they saw a section of the videotape on watchful waiting (forward video
condition) or surgery (reverse video condition). The medication section of the videotape
was viewed next in both versions of the videotape, followed by information about surgery
(forward video condition) or watchful waiting (reverse video condition), ending with a
summary section viewed in both tape versions. This manipulation of the order of
treatment option information allowed some control of possible order effects in
information presentation that could have influenced men’s preferences for treatments.
The FIMDM decision aid follows the best of the medical model. It simulates an
extended office visit with a nurse or physician oriented to providing an initial education
session prior to involving a patient in decision making. BPH was chosen as a paradigm
for the investigation of decision-making and use of a decision aid. It represents a
particular kind of clinical problem that has inherent limitations and benefits as a
paradigm for this investigation. Men, who are the least likely to be information seeking
about health probably, require an engaging decision aid to find it interesting or important.
A limitation is that since BPH is not life threatening, responses may not show vast
variability. On the other hand, the problem is representative of everyday, chronic disease.
Like all medical problems talked about in medical jargon, the decision aid introduces new

vocabulary, and new information.

55

1.2 Content analysis: talk about sexuality in the video

Since the video was intended to be a guide, it was important to know what

material was presented to men, and how it might directly influence their views of

sexuality. To document the extent of and content about sexual dysfirnction, I developed

the following table (Table 5, see below) using descriptive content analysis. I viewed the

videotape along with the videotape transcript, and the men in the video telling their

personal stories about treatment for BPH were quite vocal about impotence, hardness of

erections, intensity of ejaculation, and desire to have sex. The narrator provided

information about retrograde ejaculation, impotence, and sexual function. With each

section of the video, I matched patient testimonials to highlight what was important to the

men regarding the treatment they chose and its outcome.

Table 5

Videotape Content on BPH Treatment and Sexual Dysfunction

Videotape Section

Surgical and

Device Treatments:
TURP (transurethral
resection of
prostate)

Surgical and

Device Treatments:
TUNA (transurethral
needle

ablation)

Complications

of BPH Treatments
[after section

on treatments]

Key Content In Order of Presentation

Patient #1 testimonial: "... I now feel that
I'm I'm whole, but most importantly this
has been a program of rejuvenation in a
sense. I experience now feelings that I
haven't had for at least 20 years ...."

Patient #2 testimonial: "l was told that the
chance of impotence with the TUNA was
minute compared to a real small chance of
impotence with TURP, but still it's there."

Videotape narrator:

*Addresses men's concerns about sexual

functioning

*People may have outdated or incorrect
information.

*Retrograde ejaculation is a common
problem after surgery.

56

Table 5 (cont’d)

Videotape Section

Complications
of BPH Treatments

Key Content In Order of Presentation

*Defines retrograde ejaculation, states
it is not painful or hannful and should not
hinder sex.

*Retrograde ejaculation can affect ability to
father children, and some men don't like
the feeling.

Patient #3 testimonial: "You get to climax.
You reach a climax, you get the same sensa-
tion, but nothing passes through that was
confusing to me and still is it's not a very
happy feeling, you know.

Patient #1 testimonial: "Well, the sensation

1 found initially the sensation wasn't as
intense. That is, the feeling that one gets
with ejaculation wasn't as good as previously.
That was the only drawback to this whole
TURP operation. However, even since we
started talking, life seems to have improved.
That is, the intensity is coming back."
Videotape narrator:

*Retrograde ejaculation very common
after surgery-77/ 100 experience after
open prostatectomy, 73/ 1 00 for TURP,
25/100 for TUIP.

*Lower risk after TUlP-25/100 men

*Retrograde ejaculation is permanent
after surgery but temporary with alpha
blocker drugs-6/100 men experience.

*Finasteride not associated with retrograde
ejaculation but can be associated with
reduced semen volume

*No good risk estimates for TUNA and

TUMT

*Some men have erection problems after
BPH surgery-l6/32 men after open prostatectomy,
14/ 100 men after TURP, l2/ 100
after TUIP.

*Alpha blockers have not been associated
with erection problems-3% had problems
until they stopped taking it.

57

Table 5 (cont’d)
Videotape Section Key Content In Order of Presentation

*Problems with TUNA/TUMT seem
uncommon-numbers uncertain.

*Erection problems become more common
as men get older.

*One study compared men who had TURP
to no treatment-percentage of men with
sexual problems was about the same.

*Most men who could perform sex before
can still do so after treatrnent-but when
men have problems with urination or any
surgery, they may have sexual functioning
problems after, even if the treatment does
not directly affect it.

Patient #4 testimonial: "I mean, I still get an
erection, hard on, but I just don't feel it. My
desire has gone way down. Physically, I
think I'm capable of this, but because the
plumbing is screwed up, 1 just don't have the
the desires I used to have. And I was pretty
active up until this, you know."
(Kelly-Blake et al. 2006).

The narrator, who is Black, presents information about risks of retrograde ejaculation and
impotence in the context of BPH treatment. Interestingly, there were only two African-
American men telling their stories on the videotape, and they both mentioned sexual
functioning following BPH treatments. Their statements, above, along with the two other
White men mentioning sexual function are characterized by loss of sexual function,
lessened sexual desire, and feelings of bewilderment with loss of “mechanics.” The
patient testimonials are of men who have received treatment for BPH and appear to be
struggling to come to terms with their decision. Patient testimonial #1 appears pleased
with his decision to undergo the TURP procedure because he states that he feels
“rejuvenated” and “whole.” Testimonial #3 finds the idea that he can still have an

orgasm, albeit less intensely, with “nothing passing through” confusing. Testimonial #4

58

feels that he can still perform, but his lack of desire because his “plumbing is screwed
up” is upsetting.
1.3 Surveys

Before watching the video, study participants completed a 17-question survey,
which was used to identify demographic variables such as income, insurance coverage,
self-identified race, and marital status. BPH symptom severity was measured using the
American Urologic Association (AUA) scale, a 35-point scale in which 0 to 7 was mild
symptoms, 8 to 19 was moderate, and 20-35 was severe (Rovner et al. 2004). Symptom
bother, previously shown to predict treatment decision-making was assessed on a scale
ranging from 0-12 via a modified version of the Barry et al. (Barry, Mulley, Fowler, &

Wennberg, 1988) scale.

Table 6 Classification of AUA Symptom Score

 

 

 

 

 

Score Classification
0-7 Mild

8-19 Moderate
20-35 Severe

 

 

 

The average AUA symptom score for the sample (n=188) was 7.8, with a standard
deviation of 5.8. General health was measured on a 5-point scale from the Short Form 36
health status measure. Most men reported being in good health (M = 3.6, SD = 1.0)
(Rovner et al. 2004).
1.4 Data retrieval

Data retrieval involved accessing the database, reading the transcripts, and teasing
out themes and patterns that emerged from the transcripts based on the research
questions. I used QSR N5 (“QSR N5” 2000) qualitative software to identify common

themes. QSR N5 is a computer program that facilitates the coding, sorting, and

59

management of qualitative data. On the one hand, it is an excellent tool for sorting large
data sets, and it allows you to code large amounts of text. You are able to code entire
paragraphs, and not resigned to only coding sentences. This software also allows you to
conduct word/text searches, and provide reports of text for specific codes. It also
performs searches that allow you to look for intersections, unions, overlap, and so on.
You are able to manipulate the search to retrieve any thematic patterns in the text. On the
other hand, in order for N5 to perform all of these functions, all text must be uploaded
into the program, the codes must be uploaded, and the text must be coded. N5 will not
automatically code text for you. It will not magically organize a codebook, and it will not
analyze the data for you. Once again, it is primarily a sorting and organizing tool, and a
very good one.
F. Coding and content analysis

This investigation is a comparative analysis of Black and White men’s
perspectives on health care decision-making regarding BPH. This dissertation research
concerns men who have been asked to reach a decision that seems right for them, in the
face of information designed to help them reach a decision for or against active treatment
for BPH. Since my main research question asked about the possibility of sexual
dysfunction affecting decision-making for BPH I expected the men to discuss a range of
topics including what sexuality meant to them, their sexual experiences, how sex had
changed as they have gotten older, and what it means to be a “man.” Some of these topics
emerged, but many did not. I coded the transcripts for passages about sex and sexual
concerns, and decision-making regarding medical treatments for BPH. These data linked

with the microlevel features I discussed earlier.

60

The macrolevel components were definitely less apparent, if not downright non-
existent. The participants in the study did not explore any of the ideas I expected they
would such as Black and White men’s perceptions of race, the importance of education
for success in the US, health disparities, and any themes related to White or Black male
collective experience. I conducted a detailed content analysis of the coded and
transcribed text using QSR N5 qualitative software in order to illuminate Black and
White men’s perceptions about aging, sexuality, and health care decision-making in
general, but with specific attention to decisions regarding treatment for benign prostatic
hyperplasia. The following codes were developed to address the topics in the research
questions.

Codes
1. Sex Issues
1.1 impotence
1.2 erectile dysfunction
1.2.1 problems with erection
1.2.2 not able to get hard
1.3 sexual dysfirnction
1.4 retrograde ejaculation
1.5 male sexuality
1.5.1 manly, manliness
1.6 lovemaking, making love
1.7 sexual performance

1.7.1 negative feelings

61

Codes (cont’d)
1.7.1.2 anger/angry
1.7.1.3 difficult/difficulty
1.7.2 positive feelings
1.7.2.1 experiment with new techniques
1.7.2.2 focus more on partner’s needs
2. Making Sense of Information (efforts to put information together)
2.1 Uncertain About What Information Means
2.2 Decision Dilemma (struggling with making a decision/refuse to make
decision)
2.3 Confirsed Generally
2.9 Other
3. Feedback Information (paraphrasing information viewed from the video)
3.1 Physiologic Information (anatomic information, biological processes, no value
judgments added)
3.2 General Information about video section
3.3 Recognition that BPH is not cancer
3.4 Recognition that W is a viable option
3.5 Belief that WW is not an option
3.9 Other
4. Thought Process
4.1 Rationale (the reasons men give for their particular decision)

4. 1.1 Bother (how much symptoms bother them)

62

Codes (cont’d)
4. 1.2 Symptoms (actual change in urinary habits)
4.1.3 Immediate effectiveness (gets better soon)
4.1.4 Latent effectiveness (gets better after awhile)
4.1.5 Ineffective (linked with treatment choices)
4.1.6 Direct Effects of the Disease (how the disease progresses)
4.1.7 Action Bias (do something)
4.1.8 Inaction Bias (do nothing)
4.1.9 Latent Ineffectiveness (gets better at first then stops being effective)
4. 1. 10 Avoid Risk
4.1.10.1 Non-invasive (no cutting)
4.1.10.2 Avoid Surgery/Skeptical
4.1.10.3 Side Effects (unwanted effects of treatment)
4.2 Decision Process (how the individual makes a decision)

4.2.1 Response to New Information (how new information impacts
previously stated treatment choices)

4.2.2 Balancing Information (trying to deal with multiple types of
information (for and against) at the same time in order to make a
decision)
4.2.3 Talk with doctor/do what doctor advises
4.2.4 Needs more information

4.2.5 "Flip a coin" (a chance decision)

63

Codes (cont’d)
4.2.6 Talk with Partner

4.9. Other
In order to assign the above codes to transcribed text, I read the transcripts, and as I came
to text that fit the designated code, I highlighted that area of text and assigned a specific
code to the text. I coded complete paragraphs. N5 facilitates this process well as it opens
up the coding on the screen while reading the text, and makes for quick coding. Overall,
completely coding one transcribed interview took anywhere from 45-60 minutes. This
process was made somewhat less laborious by performing word/text searches in N5. I
performed word searches for words such as masculinity, Black, health care, sexuality,
and incontinence. Text that contained the designated words was retrieved. Having
retrieved the text with these words, I read the text, (20 lines above, and 20 lines below the
retrieved word) and decided if the content was relevant and could be coded based on my
coding scheme.

For example, the following statements made by a European American non-
college-educated man age 65 were coded as ‘sex issues’, and ‘impotence.’
A: “I mean it was just -- you can do certain things yet but they don’t say you're going to
definitely become impotent or anything like that. Most of the time you will improve like
one gentlemen improved with the urinating but the rest of it never improved at all. So I
mean he got some relief. It looked to me like he got some relief but he still was having
problems whether it was anything you can do about it I don't know. Maybe some day
they'll fix that up so -- but out of the impotency being the scary part you still watch and

wait, you know, all that.”

64

A: “Irnpotency, not that I want any more children or anything like that. I don't. I'm not
no Clint Eastwood, want more kids at that age. So I just -- but the impotency is the one
thing that bothered me most about it.”

Consider a second example where the text was more ambiguous. This is a
statement by a 70-year-old European American college-educated man. I coded this under
“thought process, other.” ‘Other’ was a fall back category that allowed me to code text
when I thought it might fit under the major code, but the content left me with some
questions. In short, if the statements left me confused or unsure, I coded the text as
“other” under a primary code heading.

A: “As I heard in the video, there's a range of reactions amongst men and I seem to fall
into that category with the others that may have as you have said, moderate symptoms,
but they don't particularly bother me. The questions you asked earlier made me realize
that it's a nuisance but it's not something I lose sleep over. And, part of my response is
based on what I call family culture. The family that you grow up in to some extent help
to shape the attitude that you have toward medicine, medications, and various medical
practices. In my family, we did not look for quick fixes. Other than aspirins and a dose
of soda water, that was the end of it, partly because there were no respectable doctors in
the backwoods of North Louisiana where I grew up. I'm taking more medications now
than what I want to be taking. Surgery at this point, I reject out of hand, maybe after the

presentation I will look at it somewhat differently.”

65

CHAPTER 4 RESULTS

Research Question 1: How does concern about possible sexual dysfunction affect
decision-making about benign prostatic hyperplasia (BPH) treatment among men
aged 50 years and older? '

Men (n=188) of the appropriate age to experience BPH (age 43-83 years old;
mean, 61 i 8 years) were selected for the relevance of the health decision task. The men
were on average experiencing mild to moderate symptoms of BPH and low symptom
bother at the time of the interview (Rovner et al. , 2004). Seventy-four men (from
amongst N=188) expressed concerns about sexual dysfunction as they were interviewed
while watching the BPH videotape (please see Table 7). Of the 74 men, 54 were married,
16 divorced or separated, 2 were never married, 1 was widowed, and 1 did not specify his
marital status. College educated men (N = 54) were more likely than non-college
educated men (N = 20) to mention sexual concerns. Neither symptom severity nor level
of symptom bother was associated with men’s spontaneous statements of concern about
treatrnent-induced sexual dysfunction. Symptom severity and symptom bother were
unrelated to treatment preference patterns (Wills et al., 2005). For this sub-sarnple,
N=74, the average AUA symptom score was 7.7 with a standard deviation of 6. 1. Men
tend to be conservative in their ordering of treatment preferences. They choose watchful

waiting first, over medications and surgery (Wills et al. 2005; Kelly-Blake et al. 2006).

Table 7 Race, Education, and Age Characteristics

 

n Age __
Total Sample (N=l88)
EA College 56 64 i 7.6
EA No College 44 60 i 7.2
AA College 51 60 :1: 6.8

66

Table 7 (cont’d)

n Age
AA No College 37 61 i: 9.0
Stated Sexual Function Concern (n=74)
EA College 28 60 r: 8.1
EA No College 10 61 i 4.9
AA College 26 58 i- 9.0
AA No College 10 61 i 9.1
Concern Stated as Important
In Ranking of Treatments (n=17)
EA College 8 58 i 8.0
EA No College 4 58 :t 4.5
AA College 5 56 i 4.2
AA No College 0

 

EA College=European American college educated

EA No College= European American not college educated
AA College=African American college educated

AA No College=African American not college educated

(Kelly-Blake et al. 2006)
BPH Treatment Preferences and Sexual Dysfunction

Seventeen of the 74 men spontaneously stated that seXual functioning concerns
were important in their BPH treatment preferences. Thirteen (amongst N=l7) were
college-educated (8 European American, 5 Afiican American), and four European
American non-college educated men. Interestingly, of the 17, there were no Afiican
American non-college educated men (Please see Table 7). Twelve (of the 17) men
preferred watchful waiting (monitoring symptoms without active medical treatment) due
to viewing medication and surgery as highest risk for inducing sexual impairment

(Please see Table 8 for summary of preference orders).

67

Table 8 Treatment Preference Order

 

 

Treatment Order AA CE AA NC EA CE EA NC
W>M>S 5 --- 4 2
W>S>M --- --- 1 ---
M>W>S ' 2 2
M>S>W --- --- 1 ---
S>W>M
S>M>W
Total (n=17) 5 --- 8 4

Participants remarking that possible sexual outcomes were important in their ordering of treatment
preferences. W=watchful waiting, M=medications, S=surgery. The treatment rank order shows the
treatment options in order of first, second, and third preference. AA CE=African American college
educated, AA NC=African American no college, EA CE=European American college educated, EA
NC=European American no college

As one of the men explained, he was an Afiican-American college educated, 56-year-old:
“I don’t want surgery, you know, and even with the medication —— now even with the
medication there’s a slight chance of sexual dysfimction, so, you know, because of that
slight chance I’m really going to be more skeptical about taking any type of
medications. ”

This same gentleman went on to declare:

I’m definitely going to look at the probability of men having sexual dysfimction

before I make a decision. ”

Sexual concerns generally influenced treatment preferences by relegating treatments
perceived as too risky to lower preference orders. For example, in considering the
possibility of surgery, some men indicated a fear of something going wrong in surgery,
such as “a slip” that would prevent ever having an erection again and having to depend
on a urine bag, as illustrated in the following exchange:

Q: Okay. And then your final one was surgery.

A: Why is that choice number three?

68

Q: Yeah.

A: Because what if there is a slip up and I can never have an erection again or I have to
use a bag to urinate for the rest of my life.

Q: Okay, so you’d be concerned about what could be the adverse eflects of surgery.

A: Exactly.

The above participant was European American, college-educated and 50 years old. For
this young man, surgery would lead to too many poor outcomes, and he was not willing

to take that sort of risk.

Another gentleman age 57 years, European American, college-educated echoed the

previous sentiments:

“Surgery would be the last resort. The thing that I’m most worried about is the loss of
sexual fimction as a result. I’ve heard horror stories. ” Clearly this man has no interest
in choosing surgery as treatment for BPH. He has based this decision not only on his

own wonies, but also on the stories he has been privy to from other sources.

To reiterate, these men were not asked specifically about sex, sexual function, or possible
side effects of treatment in the interview. However, the topic was raised by the narrator
and by four of the personal testimonials included in the video. The concerns raised here
speak to my earlier discussion of how these concerns factor into the decision-making of
older men. It is quite clear that they have no desire, irrespective of race or education, to
risk the potential for sexual side effects of BPH treatment. Now, in the sample of 17
expressly stating sexual concerns as important in their ordering of treatments, there were
no Afiican-American non-college educated men in this group. So, what does this mean?

Perhaps, it means that the AANC men were not willing to vocalize a concern about sex as

69

important in their treatment preferences in the interview environment even though they
were interviewed by a man of the same race. But, for the larger sample (n=74) of men
that stated a general concern about sexual side effects, there were no great differences in
how Black and White, college- and non-college-educated men discussed the issue. On
one level this appears to counter my earlier assumptions about their possibly being a
difference in how Black and White men define sexuality and how these definitions may
play a part in their healthcare decision-making. The lack of difference across race and
education may point to the fact that men, in general, are not all that different in the way
they think and express ideas about a topic such as BPH. Furthermore, it suggests that
there are no vast differences between African-American and European American men of
similar educational background. It is also important to note that these men (n=74),
although older, were still active and adamant about avoiding any risk to their sexual lives.
In sum, the answer to the research question: How does concern about possible sexual
dysfirnction affect decision-making about BPH? is that for older men, across education
and race, prefer more conservative treatments for BPH to avoid possible detrimental

sexual side effects.

Research Question 2: What factors trigger concern about sexual dysfunction among

Black and White men?

For the 74 men, comments about sexual concerns and treatment choice tended to
focus on retaining the physical ability to perform sex, with concerns expressed about the
risk of treatrnent-induced sexual impairment. This concern included the possibility of
retrograde ejaculation (backward flow of semen into the bladder during orgasm). This

specific side effect of surgery to remove prostate gland tissue was discussed in the BPH

70

videotape. Typical comments expressing a wish to avoid this side effect of surgery
included the following

European American, college-educated, 51-year-old man:

“ my most drastic choice is surgery. Especially now that this retrograde thing pops

up... at this point in time I am not reaay to make any drastic changes in my sexual life. ”
Afiican-American, college-educated, 53-year-old man:

“You know my risks are far greater with having complications, death, or you know, all
sorts of things — the what do you call it, the ejaculation thing and all those uncomfortable
or things that are not very nice for me are associated with the surgery to me. So I would
have to be very severe with BPH to opt for surgery. ”

European American, college-educated, 54-year-old man:

“The risks involved. It seemed like it was significant amount of risks with impotence and
with retrograde ejaculation. Even with the surgical treatments, the problem returning,

chance of returning, would put that least preferential to me. ”
European American, college-educated, 55-year-old man:

“1 ’m actually going to hope like anybody else that this is something that happens to
somebody else and not to me here because I would no want to have the surgery and be
one of the retrograde ejaculation business. I suppose that would be tolerable at the time
but if you ’d never have to deal with it that ’d be fine too, I guess. ” These four college-
educated gentleman were well aware of the possible risk of retrograde ejaculation, and

were not willing to consider treatment that would make that outcome a reality.

71

For these participants, the trigger to discuss sexual concern was retrograde ejaculation.
The statements presented here show a discomfort with the whole idea of semen going
backwards into the body. There was a sort of bewilderment that such a process could
actually happen. I think this side effect presents a problem unlike the others of
incontinence, or erectile dysfunction because it seems especially “unnatural” since
something that is supposed to leave your body in one direction (through the end of the
penis) is being deposited in the opposite direction (in the bladder). Once again, men
across race and education are not comfortable with this side effect. We see, in this
instance, that men’s bodies are the stage on which emotional distress is expressed. These

men are unwilling to accept such an outcome for BPH treatment.

Role of Sexual Partner
Several men stated a concern for the needs of a sexual partner. These comments suggest
that men who are considering BPH treatment may wish to involve their partners in the

treatment decision:
European American, non-college-educated, 62-year-old:

“(...) if you had the Open surgery and they went in and took your prostate, I guess that
really takes care of your sex life. If that ’s gone, you ’re gone. That part of your lifiz is
gone. Living with a young lady for the last 7 or 8 years, I don ’t think that would go over

very well with her. ”

72

Afiican-American, non-college-educated, 70-year-old:

“T he wife would have to be there to say, well, honey, maybe the medication or the
watchful waiting maybe something like that. [My wifia would be] involved in making that

treatment choice. ”
European American, college-educated, 74-year-old:

“I would sit down and talk with the wife too. In terms of, not just the sexual factor, well
that ’s always a part of it, but also the day-to-day living. You have to live with the person.
And, if it is going to ajfect your living a great deal, one way or another, then they should
be involved in it. ”

Based on these statements, men are considerate of the impact their decision would have
on their partners and their relationships. Each of them were concerned with a different
aspect, 62 was concerned about his lady friend and how a decreased sex life would be a
negative for her, 70 was confident in his wife’s ability to aid in his treatment decision,
and 74 took a broader perspective, although acknowledging the sexual factor, but going
beyond that and indicating a desire to make sure the everyday living is taken into
consideration as well. And again, men whose concern was triggered by their partners
cross race and education. These men are older which may indicate they have had longer

relationships and see their relationships as important to their health and wellbeing.

73

Role of Age
BPH and decreased sexual function tend to simultaneously occur in older men, but are
not necessarily related. A few men mentioned age in relation to adverse effects of BPH

treatment:
European American, college-educated, 55-year-old:

“And, then surgery would be the last choice...At my age, sexual function is important to

’9

me.
European American, college-educated, 74-year-old:

“As you age and get older, your sex drive lowers, if this you have this done, you ’re going

to blame it [surgery]. ”

Notably, the gentleman making the following statement about fertility was 73 years old
(Afiican-American, college-educated):
“It ain’t too bad, you just can ’t make no babies. But, if you have surgery, you can ’t make

no babies anyway. ”
African-American, non-college-educated, 75-year-old:

“Well, the sexual thing there....1 found out why when I ejaculate I don’t have a lot of
sperm, you know. I just figured, old age...I mean the stamina of having sex is not as

heavy as I used to have which I guess that is common. ”

The participants stretch the gamut of ideas about BPH and aging. 55 is very interested in
maintaining an active sex life; 74 very matter-of-factly states that as you age your sex
drive lowers, but men may be more prone to blame surgery as the culprit; 73 is well

aware that his baby making days are over; and 75 understands that loss of sperm with

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ejaculation is related to aging, and also that his desire to have sex is no longer as strong
as it once was. The trigger for men making these statements was age. There was
recognition that as they aged sexual life would be different. This was consistent across
race and education. That does not mean, however, they showed no interest or was ready
to do away with sex altogether, but it showed an awareness of the aging process. I was
fascinated by the gentleman speaking about not being able to make any more babies. The
fact that he pulled that out in the context of watching a video about BPH treatment, and
how he related it to being the same outcome if you have surgery caught me off guard.

So, what does it mean? It may mean that among this sample of older Black and White

men the “mythology” of male sexuality has less importance as men age.

Research Question 3: In what way, if any do education, social class, and race

influence decision-making of men?

Overall, there were no dramatic differences by education and race in how the men
spoke thematically about sex issues and BPH treatment. Rovner et al. (2004) found that
college-educated men were more likely to desire a dominant role in decision-making,
while race produced no difference in desire to have a role in medical decision-making or
who should make the decision. Both White and Black men believed they along with their
doctors should be involved in making health care decisions.

Consider the following:
European American, non-college-educated, 56-year-old:
the doctor and I are going to decide together what type of problem do I have. I

believe the doctor along with myself and the tape aflerfinding out what my problem is

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and how far we have gone, then we could make a decision together for what type of a
procedure I was going to have. ”

European American, non-college-educated, 75-year-old:

“But if you have any symptoms at all that you can’t understand you should go to your
family doctor and if you can ’t get the answers fiom him then got to your urologist. ”
African-American, non-college-educated, 55-year-old:

“Because I want to see what the doctor got to say. I can ’t diagnose myself Then, he
might prescribe some medication for me to take that might lessen my chances of going to
surgery. ”

55 goes on to explain:

“I need a doctor ’s opinion to help me decide and to describe or send me to a specialist to

tell me exactly what’s really going on and what really can help before surgery. Surgery

is the last straw. ”

Afiican-American, college-educated, 52-year-old:

“I usually sit down and talk to my doctor in detail. I don’t allow him to rush me in and
rush me out. Let ’s talk about everything. I don ’t want any surprises. You explain why
you’re doing something. ”

A handful of participants indicated that talking with their wife/partner would be
important in their decision-making:

European American, college-educated, 74-year-old:

“ I would sit down and talk with the wife too...In terms of not just the sexual factor, well

that ’s always a part of it, but also the day to day living. You have to live with the person.

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And, if it is going to afi‘ect your living a great deal, one way or another, then they should
be involved in it. ”

Afiican-American, college-educated, 56-year-old:

“But whatever I would decide would be based on me talking to my wife, me doing some
research, me talking to my family doctor. You know, I would look at all of that before I
would make a decision. ”
Afiican-American, non-college-educated, 70-year-old:

“The wife would have to be there to say, well, honey, maybe the medication or the
watchful waiting maybe something like that. ”

Most men in the study understood that the video emphasized shared decision-
making and accepted this approach. The fundamental approach of shared decision-
making is a viable enhancement of “usual” care and enhanced explanation can
supplement the clinical encounter in two important ways: 1) the video fills in gaps and
addresses what the doctor is asking about and why. It highlights what matters in BPH
and provides a model of disease, disease progression, and impact on outcomes, and 2) the
participants expressed confidence that the information presented in the video was
balanced. It gave a full discussion of the various outcomes. Clinicians focus on what is
ambiguous or needs further exploration in order to clarify their own thinking and
diagnostic assessment. While the brief clinical encounter makes an in-depth interview
rare, a decision aid can provide the overview and balance, while the health care provider
can narrow in on in-depth questioning.

Across race and education, the men in this study believed they should be involved

in making decisions with their health care providers. Of course, believing they should be

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involved and actually being involved are two entirely separate things. Studies (Krieger et
al. 2003; Schulz et al. 2000; Moss 2000; Williams 1997; Popay et al. 1998) show that
non-Whites get less time in the clinical encounter than do Whites, but less time does not
negate men’s desire to be involved in shared decision-making. What Black men say in
this study may not be happening in their actual clinical encounters. It is important to note
that this is the information age and expectations are increased, but those expectations may
not be met across race and education. Also the Black men in our sample tended to be
community leaders. This does not mean that they were all necessarily highly educated,
but they were respected and people listened when they spoke. For these men there was
an added expectation that they would be involved in decision-making with their doctors
because of the leadership roles they held in their communities. On the other hand, a
different group of Black men would probably have a different take on the educational
materials and would have a different take on shared decision-making.

Research Question 4: How do men define masculinity and male sexuality? Is there
a difference in definition of masculinity and male sexuality between Black and

White men?

The men in this study did not speak explicitly about masculinity or male sexuality
per se. The comments made about sexual concerns and treatment choices tend to focus
on the physical act of sex. College educated men, both Afiican-American and European-
American, were more conversant about sex and possible treatment outcomes.

There was great concern about particular treatments compromising “the sexual
activities,” about diminished sexual performance, and about loss of sexual function

entirely, reflecting a belief of the men that BPH treatment is associated with a significant

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risk of diminished sexual functioning. There was great hesitancy to engage in treatment
practices that would limit their ability to engage in physical sex. All comments were
spontaneously offered, and none of the participants spoke about sex in a way that did not
involve the mechanics of sex. For these participants, having and maintaining the physical
ability to engage in penetrative sex was highly important. Even though the men, across
race and education, did not explicitly define masculinity or sexuality, and again they were
not asked to do so, it is resoundingly clear that they were well aware of the subject over
the course of viewing the BPH videotape. In my earlier discussion of masculinity, and
hegemonic and marginalized masculinities, the men in this study did not speak on that
particular framework. What they did speak to was a desire to maintain their claim to
“manhood” and protecting the “family jewels.” This would indicate that men talk about
these issues in a lay fashion. Manhood and family jewels will reverberate with any man
irrespective of race or education, and for the men in this study, avoiding treatments that
would disrupt their lay notions of masculinity was of prime importance.

One participant indicated a loss of “manhood”:

Afiican-American, non-college-educated, 70-year-old:

“If you remove it [prostate], then you ’re going to take away the manhood in me. ”

Another explained the “family jewels” were important to a man:

African-American, college-educated, 63-year-old:

“That is an area that is personal to a man, the family jewels and things and it ’s diflicult
to handle. And it let you know you can expect problems and a lot of men have problems

with that. ”

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Research Question 5: How do these definitions shape health care decision-making

for men?

Again, these men did not explicitly define masculinity or male sexuality, but for
men contemplating treatment for BPH, avoiding decreased sexual activity or complete
loss of sex was an essential component in their decisions. Sexual concerns influence
treatment selected by relegating those treatments perceived as risky to the end of the
available options list. Men who perceived a greater likelihood of sexual impairment with
a treatment decided that treatment was to be avoided as long as possible. Medications
and surgery were considered most problematic, with medications being a better choice
than surgery. Medications posed “less risk” and were “less invasive” than surgery.

Moreover, surgery is permanent and medications are reversible.
One participant, European American, non-college-educated, 62-year-old, exclaimed:

“ if you had the open surgery and they went in and took your prostate, I guess that
really takes care of your sex life. If that ’s gone, you ’re gone. That part of your life is

gone. ”
Similar statements included:
African-American, college-educated, 59-year-old:

“The reason why surgery was my last option is that based upon the impact of surgery and
what I mean by that is some people that] have known to have surgery say that they have
had problems with erections and things of that nature, so in turn that impacts the quality

of life and the sexual opportunities. It impacts the sexual activities. ”

8O

European American, non-college-educated, 60-year-old:

“...I hear if you have the surgery, you can ’t have any sexual relations. ”

European American, college-educated, 65-year-old:

“ the potential risks of incontinence, what’s the other word — inability to perform
sexually. Impotence. You know, I just don ’t want to have to --- It seems to me there may
be some risks there [ with surgery] and don ’t want to have to deal with that if I don ’t have
to. ”
Afiican-American, college-educated, 56-year-old:

“I noticed that they were saying that while I ’d be on some of the medications if I were to
have some of these medications, if I were to stop taking the medications then the side
effects may go away. So, you know, with that then I am going to be less likely to take the
medication but if I do take the medication I’m going to be more quick to maybe come of
of it if I get some of those side effects that aflect my sexual drive and sexual competence
and stuff you know. ”

Afiican-American, college-educated, 52-year-old:

but I really do think the drugs, when they were done, I wrote this down, they ’re not
telling the truth about drugs. About it not messing up your sexual performance. I don ’t
think it was true. ”

One man was quite willing to trade side effects. He was prepared to live with the
inconveniences of BPH.

The African-American, college-educated, 56-year-old asserted:

“I don’t want the surgery, you know.... You know, I would — you know, if I had a

problem with drainage then I might go to a Depend You know I ’ll wear a Depend. ”

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Maintaining some level of sexual performance was important even if that level was
diminished from previous years. One Afiican-American, college-educated, 62-year-old
explained,

“I ’d rather piss my pants than to lose my pecker. If I had my choices, I still like to use it
once in a while. Not like the old days, but when I get the chance. ”

At an ever increasing rate, health care consumers are being encouraged to acquire and
work through medical evidence to assist their doctors in making decisions about their
health care. This has great advantages when both parties are up to the task. However, the
problem arises when patients have incomplete information, and doctors are not engaged
in a discussion to provide patients with full information. For a chronic issue, such as
BPH, men in this study have verbalized a strong desire to be involved in the decision-
making process about treatment. In the interviews, men were placed with men of the
same race and approximate age to facilitate a more conversant atmosphere. In a real
world clinical encounter, such a dynamic may not be possible. And again, although the
men in this study did not explicitly define masculinity or male sexuality to examine how
the definitions may shape healthcare decision-making for men, they communicated using
lay knowledge. They knew they did not want impotence, or decreased sexual
performance, or problems with erections. These data show that lay definitions strongly
influenced their decision-making, and their decision was anything to treat BPH that
would not produce a detrimental sexual outcome. Two gentleman went even further by
proclaiming they would be more than willing to “piss their pants” or “wear a Depend” if

that meant maintaining the “sexual activities.” Interestingly, both of the men espousing

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these ideas were African-American and college-educated. I would suggest that for these

men positive emotional bodily expression revolved around their ability to engage in sex.

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CHAPTER 5 DISCUSSION

Overview of Study

I hypothesized that the possibility of treatrnent-induced sexual dysfunction
impacts men’s decision-making about benign prostatic hyperplasia. The key types of
treatments available for symptomatic BPH require a careful assessment of their positive
and negative consequences (Leliefeld et al. 2002). One consequence receiving
heightened attention in the clinical literature is sexual fimction. In this semi-structured
interview study, a substantial proportion of men made comments about sexuality without
being asked about it specifically. This study finding highlights concerns about sexual
functioning as a relatively “high stakes” concern of a subset of men as they consider BPH
treatments.
Summary of Main Findings

Although there were virtually no differences in the sample across race and
education, these data do support the primary hypothesis that concern about sexual
dysfunction does affect decision-making about BPH treatment for men aged 50 and older.
Treatment for BPH falls into three categories: watchful waiting, medications, and
surgery. Some possible side effects of treatment include incontinence, retrograde
ejaculation, and diminished, if not loss of sexual function. When faced with these
possible consequences, men choose less aggressive treatment, i.e. watchful waiting.
Findings suggest that at least some men are hesitant to trade symptom relief of BPH for
possible decreased sexual capacity perhaps due to a perception that this is a high stakes
decision. The physical, interpersonal, and emotional impact of a high stakes decision

leads to conservative decisions. Moreover, acknowledgement of the emotional aspect of

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a high stakes decision can be conspicuously absent from the medical encounter. The
design of this study did not facilitate a more in-depth exploration of sexuality and sexual
concerns. However, it is important to note that some men mentioned their spouses and
girlfriend and that any decision regarding treatment would include them because the
consequences necessarily impact them as well. These comments suggest that sexual
capacity and/or function extends beyond the mechanical and technical aspects of erection
and ejaculation, encompassing relationships that are not limited to the bedroom (Penson
et al. 2001; Bokhour et al. 2001).

Additional findings suggest that men are conservative in their ordering of
treatment preferences. They choose watchful waiting first, over medications and surgery.
Perhaps, they do this because watchful waiting is not invasive, does not require a hospital
stay, and does not negatively impact one’s sexual capabilities. However, it could be
argued that symptoms of BPH like frequent urination, nocturia, and dribbling negatively
impact sexual function when no treatment is undertaken. Apparently, BPH treatment is
viewed as a high stakes decision. BPH and diminishing sexual activity are often
simultaneously occurring, yet unrelated events in the aging male population, and I find
that men are choosing watchful waiting to avoid negative sexual consequences.

A key finding from this ancillary study is that men view BPH treatment as a high
stakes decision. This research is important because it is one of the first to report an
analysis of sexual concerns among an educationally and racially diverse sample of men.
Men are quite hesitant to choose treatments that may negatively impact their sexuality.
Sexuality is a “big deal” to at least some men, and in this diverse group of older men it is

rated as extremely important. Potential sexual outcomes of treatment were weighed

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against relief of symptoms from BPH. As a result, men chose watchful waiting as a first
treatment for BPH as it presents less risk for negative sexual outcomes. I recognize that
treatment choice depends upon the severity of the disease. The study findings also
highlight the importance of legitimizing watchful waiting as a viable treatment option.
However, in routine health care practice, watchful waiting may not be routinely presented
as a treatment option. To the extent that men’s preferences and health care provider
approaches to counseling men are mismatched, a contributing factor to men’s health
disparities is not effectively addressed.

Lastly, there were no huge differences in definitions of male sexuality and
masculinity among older Black and White men which suggests that the mythology
surrounding male sexuality may dampen as men age. Men did offer definitions reflecting
lay knowledge which were important in choosing treatments that did not negatively
impact sexual performance.

Study Limitations

A strength of this study is the diversity of the study sample of N=1 88 men.
However, it is possible that the study findings might have been different had a different
sample of men been interviewed. In addition, the conclusions are based upon comments
that men offered spontaneously about sexual concerns. An open-ended interview
approach specifically addressing sexual concerns would have provided more detail and
perhaps a deeper understanding of what the men were thinking and feeling. In this
analysis, although subjects varied by ethnicity, the sample exhibited little difference by
education. Most of the participants, at the time of the research, lived in a metropolitan

area and worked in the University, State Government, or the auto industry. Additional

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issues might have been uncovered if the interviews included more men from rural
Michigan, included men from additional ethnic backgrounds, and compared men with
BPH to those with prostate cancer and the general population. There may be a socially
acceptable response bias on the part of the respondents. They may have wanted to please
the interviewer or present themselves in a positive light for the research. The
interviewers, although of same race as the interviewee, and approximately the same age,
usually were of higher social status. Clearly all the men found the video useful in their
decision-making, but the participants were recruited from the community, and had no
constraints on time to view the decision aid. A purely clinical population may have
responded differently especially if they were watching the video while waiting to see the

doctor.

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CHAPTER 6 CONCLUSIONS
Anthropological Implications

Benign prostatic hyperplasia (BPH) is increasingly recognized as an important
public health problem affecting older men. Fifty percent of men in their sixties and as
many as 90 percent of men aged 70 and older experience at least some symptoms of
BPH. Like many other “benign” urologic conditions, BPH, although non-cancerous, can
have a substantial and significant impact on men’s overall health and quality of life
(Penson and Krieger 2001).

There is a well-recognized and substantial gap in life expectancy between men
and women. Men in the United States suffer more severe chronic conditions, have higher
morbidity rates for all 15 leading causes of death, and die nearly seven years younger
than women. (Courtenay 2000a). Oftentimes, men’s poor health is explained as a result
of men’s doing gender, i.e. men behaving in ways that conform to traditional hegemonic
masculinity that negatively impact their health (Courtenay 2000a, b). In the United
States, the male that fits this traditional form is White, heterosexual, highly educated, and
upper class. The practices men use to structure and acquire power are the same that
undermines men’s health, for example, refusing to acknowledge pain or needing help,
always showing emotional and physical control, maintaining the appearance of being
strong and robust, aggressive behavior and physical dominance, and a ceaseless interest
in sex. Courtenay (2000a) argues that these practices are replicated in the health arena
and that these demonstrations of gender and power represent forms of microlevel power
practices that reinforce and maintain broader relations of inequality. When men dismiss

their health care needs, men, according to Courtenay, are constructing gender. When

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bragging that he has not seen a doctor in years, a man is simultaneously describing a
health care practice and establishing his masculinity. Men’s health related behaviors and
beliefs function to reaffirm men as the dominant sex, and any concern about health is a
feminine trait (Courtenay 2000a). Although it is unlikely that Black men can claim the
power central to hegemonic masculinity, their poor health outcomes cannot be explained
solely by doing gender and neither can White men’s. The men in this study were very
interested in participating in shared decision-making with their healthcare providers, and
they did not view seeking medical help or treatment as being weak. However, their
strong desire to maintain sexual activities could reflect some masculine posturing, or as
Courtenay (2000b) would argue they are constructing masculinity but not the dominant
form. It is the microlevel power practices I argue that come into play in the clinical
encounter, and especially, surrounding shared decision-making. In the clinical encounter
between patient and doctor, there exists a wide difference in status, race oftentimes, age,
gender oftentimes, education, and life experience. Such difference makes the process of
shared decision-making even more daunting, and these differences, though not
insurmountable, makes the clinical encounter ripe with tension that both parties may or
may not be fully aware.

Most anthropologists will recognize the “taken-for-granted” nature of men in
much of our current literature. A quick overview of ethnographic indices shows
“women” as a category while “men” is rarely listed. Masculinity is seen as the “norm”
and as such does not require a separate inventory (Gutrnann 1997). Along the same vein,
and my personal pet peeve, “gender” often means women and not men. This study

represents a significant contribution to a currently very limited body of knowledge and

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research literature about the sexual concerns of men in relation to BPH treatment,
effectively addressing two issues rarely tackled in healthcare circles, men’s health and
male sexuality. Much of the data presented here supports the notion that many men
continue to have an interest in sex and remain sexually active in later life. Maintaining
that activity in the wake of urologic distress becomes a compelling issue for an increasing
number of aging men, when they are fully informed about the side effects of a potentially
helpfirl treatment for BPH symptoms.

I hypothesized that men’s concern about possible sexual dysfunction would affect
decision-making about BPH treatment for men aged 50 and older. For at least some men,
sexual concerns about the effects of BPH treatments did influence their preferences for
BPH treatments. Using a critical medical anthropology approach dictates understanding
health issues in light of the larger political and economic forces that guide interpersonal
relationships, shape social behavior, generate social meanings, and condition collective
experience (Singer 1990). This research attempted to critique and analyze the macrolevel
processes with a look to race, whiteness, social class, and health disparities. Microlevel
processes are “on the ground” local processes, including things like decision-making and
men’s definitions of sexuality and masculinity. These levels of analysis are
interconnected, but neither level is the essential level of social reality (Courtenay 2000a).
The men in this study varied very little across race and education, and for the most part,
shared similar attitudes about treatments for BPH and shared decision-making. The
participants were overwhelmingly employed, even some of the homeless shelter
residents, and over 91% of them had health insurance (Rovner et al. 2004), which

negated an economic deterrent to receiving health care services. However, that does not

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hinder an analysis of the microlevel, which is embedded in the macrolevel. What men
say and do reflect wider social relations of power at the microlevel. My hypothesis that
men’s definitions of masculinity and male sexuality would inform their decisions about
BPH treatment proved supportable. Although men did not speak of hegemonic
masculinity or male sexuality specifically, they did address concerns surrounding “loss of
manhood” and protecting the “family jewels.” It was this “street level” discourse that
resonated in the interview transcripts. Men were not using fancy words, but they knew
they did not want any treatment that would harm their ability to have an active sex life.
As a result, men chose conservative treatments for BPH, and one went so far as to
proclaim, “I’ll wear a Depends.”

Overall, the men in this study were very concerned about the negative sexual
consequences associated with BPH treatments. Sixty-three percent chose watchful
waiting over the other two treatment modalities (Wills et al. 2006). Additionally, the
men appeared quite cognizant of the issues surrounding decreased sexual prowess with
age, but that did not prevent them from choosing a conservative treatment in order to
maintain their sex lives. And again, although they did not speak of the body as a stage on
which emotions and social stresses are expressed, their consistency in treatment
preference speaks to such an underlying theme. They were all about positive emotional
“play” for and on their bodies. Men, across race and education, were not about to
undergo any treatment that would turn their positive “play” into a negative. It was at the
microlevel that I was able to elaborate the complexity of decision-making and
understanding that contextual factors are important for men when making decisions about

BPH treatment. Let us not forget that at its core shared decision-making is about power,

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and who has the power to act on a decision. It is at this juncture that we see the
manifestation of macroprocesses at the microlevel. Patients are oftentimes of lesser
social status than their healthcare providers, but the men in this study overwhelmingly
agreed with the premise of the tape, which is advocating shared decision-making.
However, we know that non-Whites get less time in the clinical encounter than do
Whites, but for this group of men, less time does not negate their desire to be involved in
shared decision-making.

For anthropology, it will be important to understand that men’s health and male
sexuality are a couplet. But, first, we have to get on the men’s health train. If we are to
be culture scientists, it would be to our detriment to neglect a ripe field of study, and
especially, those anthropologists that subscribe to “studying gender.” Men want to
maintain a sexual self and age, race, or education does not dampen this desire. So, what
does this mean when you consider all the social science research that posits race and
education as barriers to receiving health care? There is a 4-way disconnect between
social science research, what men say, what other literatures say, and what actually
happens in the clinical encounter. Of course, I can only address what the men say in this
investigation, and what they say, overwhelmingly, is that they want to be able to engage
in sexual activities. They want to be involved in shared decision-making, and the
decisions they make will be determined, to a rather large degree, on possible sexual side

effects of treatment.

Future research would entail asking men of different ages and racial backgrounds
specific questions about health and sexuality, and the interplay of these two features are

important, if indeed they are, to other clinical decisions. Also, examining actual patient-

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doctor encounters in the clinical setting would allow an incisive look at the balances of
power and see how the shared decision-making process works. At this point, I turn to the
clinical implications for examining men’s health and shared decision-making.
Clinical Implications
Expanding the model of men’s health

Men in this study found BPH to be a relatively “high stakes” decision because of
the potentially significantly negative side effects of treatment. As such, they were very
conservative in their treatment choices, and consistent in their desire to maintain their sex
lives. These findings suggest two aspects to an expanded model of men’s health. The
first is that approaches to improving prevention by encouraging men’s increased
participation needs to include a discussion of the consequences, in their terms, of
potential screening and treatment that might ensue from such increased participation. In
addition, I would suggest that the underlying approach needs to progress from the
traditional Medical Model that is implicit in research on men’s health, and would
advocate a Partnership Model (PM), described increasingly over the last twenty years (
see Coulter, 1999; Elwyn et al., 1999; Brody, 1980; Quill, 1983). The medical model’s
illness trajectory is one in which illness results in treatment, where “illness” is defined as
symptoms that are severe enough to warrant treatment. The medical model may include
a conservative approach; the premise is that “we’re not there yet.” This means that the
patient and doctor agree that the presenting illness, and in this instance, BPH, has not
reached an intensity where treatment is offered, but the patient remains in the queue for

treatment when needed.

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The PM would begin with the assumption that the patient will participate in
establishing the goals of prevention or treatment after the doctor describes the potential
courses of action in this circumstance. This approach, while it has been talked about, is
rarely practiced (Braddock, 1999). The PM, which is the approach modeled in the
educational videotape about BPH and its treatment, is a fairly radical approach to
presenting treatment options because all therapies (watchful waiting, medications,
surgery) are given equal emphasis. Men expressed confidence that the information was
balanced. Raising watchful waiting to the status of a medical therapy, as was done in the
videotape materials used in this study, remains unusual in medicine. Men often
responded to the content of the videotape by deciding that watchful waiting was an
appropriate and non-threatening therapy for BPH. However, I do not know the extent to
which men would have chosen to “do nothing,” had the videotape presented only
medication and surgical treatment options. By explicitly laying out the therapies in this
paradigm, sex was salient enough to come out in the discussion spontaneously.

Perhaps more importantly, an interview environment was created that permitted
men to speak about sex, interviewers were of the same race and approximate age of the
interviewees. The mention of sexual concerns is something that may or may not happen
in a man’s routine health care setting, although I would assert that it does not, but these
study findings indicate that sexual concerns are salient for a number of men. Also, men
noted the importance of including their spouse or girlfriend in making a treatment
decision that would necessarily impact her life. They seemed to understand that a
detrimental sexual side effect would impact not just them but their partners as well

suggesting that sexual function extends beyond the mechanical and technical aspects of

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erection and ejaculation and encompasses relationships that are not limited to the
bedroom. Again, they are constructing masculinity that is not the dominant form. These
men appear to counter the accepted metanarrative on masculinity and what it is to be a
“man.” These men want help and advice for a chronic health problem and they want
their relationship partners along with themselves and their doctors involved in the
treatment decision. Mind you, these men are 50 and older, and their life experiences may
play some role in how they address health issues. Additionally, having health insurance
may make one more likely to feel “suited” to engage in the health decision-making
process.

Future research should include a discussion of presenting treatment options in a
manner that gives equal emphasis to different therapies. A central contribution of the
Partnership Model (PM) is that watchful waiting is elevated from “doing nothing” to an
active process involving patient and doctor. Additionally, there is a need for discussion
with couples about sexual activity prior to treatment, so that men with their partners can
make a truly informed decision about BPH treatment and possible post-treatment
outcomes. This study suggests that would be highly desirable, and that materials like the
BPH video utilizing the Partnership Model might facilitate the discussion. Such a
discussion would emphasize the importance of men’s relationships outside the bedroom
and would not center on his ability to ejaculate or to attain and maintain an erection.
Involving ourselves in such an undertaking will be one way to broaden our awareness and
perspective on men’s health issues.

Additionally, not only are decision support tools important, but patients need time

to absorb the information, as it may change their decisions, and they may need time to

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reassess and think about new information they have received in order to reach a stable
treatment choice. Decision aids should be given after a diagnostic visit, but before a
treatment decision is made. This may add an additional visit to the overall decision
process, but it may provide the best avenue for conveying full understanding to the
patient. Full understanding is vital for informed decision-making and premature
termination of health care discussions may lead to decisions that do not reflect the
decision that would be made under full information. Now, we have to ask ourselves,
“what is a big enough stakes decision to warrant an extra visit?” It may not be quite as
easy as “surgery is high stakes” as is true with BPH, but there may be a need for a new
ICD code such as “non-urgent treatment decision and consequences intensity.” There
may be a threshold above which an extra visit is paid for. This extra visit would be a
treatment decision visit, and would be paid for when a decision aid meeting minimum
standards is provided and discussed. In addition, participants indicated a preference for
involving family members as well as physicians in decision-making. For this reason, it
may be important to create a new type of “decision-making clinical visit” for important,
but non-urgent decisions that involve potentially irreversible patient outcomes.

Finally, as more patients are encouraged to work through medical evidence and
share in decision-making with their doctors, decision tools will assist in this process. In
this study, men, across race and education, benefited from the decision aid. They found
the information accessible, they did not feel they were being “talked down to,” and they
overwhelmingly agreed that they would recommend it to a fiiend. This suggests that
decision aids do not need to be tailored specifically for a particular racial/ethnic group or

for specific education levels. A well-designed decision aid would be effective for men of

96

any racial/ethnic group and any education level (Rovner et al. 2004). Tailoring DAs to
differences in ethnicity and education may not be the most important foci of future DA
development. Doing so, would present its own problems because tailoring to presumed
differences always carries with it the potential for limiting access to information among
groups assumed not to be able to understand sophisticated information (Rovner et al.
2004). As I stated earlier, the clinical encounter with doctor and patient is ripe with
power tensions. However, if we are able to institute the above recommendations
regarding a “decision-making visit” with doctors having the time to provide full
information; this contested space could perhaps disappear. The activated, informed
health care consumer is the “ideal,” and such a consumer empowered with the
information provided by a well designed decision aid used within the Partnership Model
could be an additional element that we can use to address men’s health issues and that
permit us to engage in a discourse that moves beyond men’s “doing gender” to explain

men’s poor health outcomes.

97

APPENDIX

98

Health Information for Patient Decision-Making (HIPD)
Prostate Health (Funded by the US Agency for Health Care Research and Quality)

Michigan State University is conducting a project to evaluate an educational program
designed for men with Benign Prostate Hyperplasia, or BPH as it is usually called. BPH
is a common condition of older men. It most frequently causes difficulty with urination.

Doctors in different parts of the country suggest quite different treatments for BPH. This
shows that even doctors don’t necessarily agree on the best treatments for BPH.

Shared Decision-Making

What a man does about BPH depends a lot on his values and the way he lives. There is
no one right choice for treatment and the best option may change over time. Information
Videos have been developed to help men understand the harms and benefits of various
treatments. They give information to men so that they and their health care provider can
be partners in the decision about the best course of action. This partnership results in a
treatment choice that is right for each individual patient. But health care providers don’t
yet know the best way to present the information needed for patient decision-making.

HIPD

Health Dialog and the Foundation for Informed Medical Decision Making have produced
a video to help patients make a more informed choice about BPH treatments. Our
project’s goal is to find out what types of information are useful in the video and what are
not. We’re simply trying to learn about what kinds of information men find helpful.
Each man’s opinion is important.

We are looking for men to participate in this project. Participants will watch the hour-
long BPH video and will be asked for their reaction. The whole process takes about 2-
1/2 hours. Participants will receive $40 for completion of the interview as well as the
Opportunity to come to a men’s health fair. The project is open to men over the age of 50
who are Afiican American or White.

This is an opportunity to help the health care system become more responsive and
improve patient decision-making and patient-physician communication.

Key Staff:

Margaret Holmes-Rovner, Ph.D.
Prinicipal Investigator

Cynthia Alderson, Project Manager
Vence Bonharn, In, 1D.

Janet Lillie, Ph.D.

David Rovner, M.D.

Gilbert Williams, Ph.D.

Celia Wills, Ph.D., R.N.

99

To participate in this project, please call Cynthia at 517.432.5484

©Michigan State University 2001

100

Pre-Video Script and Tasks
(January 22, 2001)

Key to participant copy of surveys:

Blue Pages=lnterviewer reads and writes answer on the blue form

White Pages=lnterviewer hands the page to the participant to write on and hands back to
interviewer.

Key to the markings in the script:

12 point font, no bold = words to say to participant

14 point font, bold = words to say to participant with emphasis
Boxes at right margin = standardized responses to common questions
Boxes with grey fill = text of cards to be handed to the participant

= stop the video
© = [Interviewer has to perform some action or facilitate some action]
SCRIPT BEGINS
Hello, my name is . I am a trained interviewer for the

 

HIPD prostate project. Thank you very much for meeting with me today.
Have a seat wherever is most comfortable, and where you can see the TV
screen okay. Is there anything you need before we get started?”

E [Participant seats himself]

As you know, you have been asked to participate in a very important
project and we are appreciative and grateful for your time. By the way,
how would you like me to address you or call you?

a [Match their salutation]

You can call me . Today we are evaluating an educational
program designed for men. We want to find out what’s useful in this
program and what’s not useful. We’re trying to learn more about what

   

101

kinds of information men find helpful. Your individual thoughts regarding
this information are what we are interested in. Your evaluation of this
program is the most important aspect of this project. This interview and
the video are not meant to be medical advice. If you have any questions
it would be best if you talk with your doctor.

If subject says he has no doctor and wants one, suggest he hold question till end when can give list of
doctors taking patients.

The first thing we will do is go over the consent form, which explains the procedures of
the project. Please read it.

E [Hand blue consent form to participant. Allow an appropriate amount of

time for them to read it]

I want to highlight some points.

g [Mention the bold points, have them sign the blue form and hand them a

copy of the white one to keep]

 

1f participant asks about procedures for
confidentiality, tell them the only place they are
identified is the 1D form and a list both kept in a
locked file drawer available only to the Principal
Investigator and the Project Manager. It is
separate from surveys or tape recordings. Your
identity will never be divulged in such a way that
you can be personally identified.

If they ask about payment if they quit early, the
answer is they only get paid for completing the
surveys and video.

 

 

 

102

Consent Form

Michigan State University is conducting a study that deals with providing quality
information to men about men’s health and Benign Prostatic Hyperplasia (BPH). We will
interview men about information commonly used to communicate benefits and risks of
medical treatments. The interview may take up to three hours.

In addition, the study seeks to assess men’s use and understanding of graphs, drawings,
and diagrams that inform men about BPH. The study will help nurses, doctors, and other
health practitioners find better ways to communicate information that assists men in
making decisions about medical treatments.

If you agree to join this study, you agree you will watch a video about BPH, a prostate
condition, and you will be asked a series of questions. These questions will be about your
health history, including prostate health concerns. A trained interviewer will ask you if
you understand the issues involved with the health of your prostate gland and other
medical issues associated with BPH. Also, the interviewer will video record your
answers, but not your name or address.

If you agree, please sign the following statement.

1. You freely agree to take part in the study, described above, being conducted at
Michigan State University.

2. You may withdraw from this study at any time without penalty.

3. You will receive a payment of $40.00 for completing the interview session.

4. You understand and agree that your responses may be used as part of the analysis of
information materials. .

5. You understand that the investigators may publish results of this study; however,
your name and responses will not be identified. Your privacy will be protected to
the maximum extent allowable by law.

6. If you have further questions regarding this study, please contact Dr. Margaret
Holmes-Rovner of the Department of Medicine, Michigan State University, East
Lansing, MI, 517.353.3128 or if you have questions or concerns regarding your rights
as a research participant, please contact Dr. David Wright, UCRIHS (University
Committee on Research Involving Human Subjects) Chair, at 246 Administration
Bldg., Michigan State University, East Lansing, MI, 517.355.2180.

7. You may refuse to answer any question the interviewer asks.

8. This will not affect your health care in anyway and your physician will not be
informed about the interview.

Signed Date

 

103

SURVEY

Before we start the video I have a few background things to ask you
about. Most of the questions are about Benign Prostatic Hyperplasia (or
BPH). There are four sections: 1) General questions, 2) symptoms, 3) BPH
knowledge, and 4) medical instructions.

GENERAL QUESTIONS

6 [Please check one answer to each question:]

1. In general, would you say your health is:

Excellent _
Very good _
Good _

Fair _

Poor _

2. What is your present marital status?

_ Married
__ Divorced
_ Single
_ Widowed
__ Other
_ Refused

3. Who do you turn to most often for help with your medical problems?

_ Friend, relative, or spouse
_ Minister or priest

__ A mental health professional
_ A medical doctor

__ No one

_ Don’t know

__ Refused

104

4. How often do you speak to this person about your health?

Once a year
Once a month
Once a week

_ More often
__ Refused

5. If you have had a prostate problem have you talked about it with

E [Check all that apply. If participant has not had the problem go on to

question 5, otherwise complete this section and then go to question 7]

_ Friends

_ Internet chatrooms

_ Neighbors

__ Family

_ Doctor

_ Nurse

_ Other (List type of person or information source)

 

 

 

__ Refused

6. If you were to have a prostate problem would you talk about it with

" [Check all that apply]

   

_ Friends

__ Internet chatrooms

_ Neighbors

__ Family

_ Doctor

_ Nurse

_ Other (List type of person or information source)

 

 

 

_ Refused

105

7. Have you gotten information about prostate problems from

__ TV, radio

_ The Internet

_ Printed materials (newspaper, magazines, books)
_ Other '

_ Refused

8. In making a decision about treatment for a prostate problem, who should decide
treatment.
Check one.

_ I should decide, using all I know or learn about treatment for prostate
condition

_ I should decide but strongly consider the opinion of my physician

_ My physician and I should make the decision together, on an equal basis.
_ My physician should make the decision but strongly consider my opinion
_ My physician should decide, using all that is known about treatment for
prostate condition

_ Refused

9. Do you have any kind of health coverage, including health insurance, prepaid
plans such as HMO’s or government plans such as Medicare

__ Yes (Go to question 9a. and 9b.)
_ No (Go to question 10)

_ Don’t know

_ Refused

9a. What type of health care coverage do you use to pay for most of your
medical care?
Is it...

_ Your Employer

__ Someone else’s employer

_ A plan that you or someone else buys on your own
_ Medicare

_ Medicaid or Medical Assistance

_ VA

_ Medicare and private insurance

_ Your employer and someone else’s employer

_ Other

_ Employer and another source

106

__ Some other source, please specify
_ None

__ Don’t know

_ Refused

9b. How concerned are you that your health coverage may not pay for
some treatment?

_ Very concerned
__ Not very concerned

_ Unconcemed
__ Refused

10. What was the highest level of education you have completed?

_ Elementary

__ Some High School, How many years?
__ High School Graduate/GED

_ Some College

_ Associate’s Degree

_ Bachelor’s Degree

 

 

 

__ Master’s Degree, Please specify
_ Doctorate Degree, Please specify
_ Refused

11. Are you of Latino or Hispanic origin?

_ Yes

_ No

_ Don’t Know
__ Refused

12. If you are employed what type of work are you doing, or if not what type of work
did you do?

 

107

13. What is your yearly household income?

_ (less than $10,000)
__ ($10,000-$29,000)
_ ($30,000-$59,000)
_ ($60,000-$89,000)
__ ($90,000 or more)
__ Refused

SYMPTOMS
During the video the moderator will refer to a questionnaire that is
provided to patients’ in the video. I will ask you those same questions now
and it will provide you and the researchers some information about
whether you have symptoms that may be due to BPH. These questions are
used to measure whether you have the symptoms and their severity. It is
not a diagnostic test. It will not tell you whether you have BPH. It may
help you decide if you want to talk to your doctor. We understand that
these health related questions are personal in nature. I want to assure you
that your responses are strictly confidential and no information reported
will personally identify you with your responses. We will total your score
now so you will have it while you are watching the video. I will read you
the questions and possible answers each time. The possible answers are
not at all, less than 1 time in 5, less than half the time, about half the time,
more than half the time and almost always.

a [Fill out the blue sheet for research purposes. Compute the score and the

symptom level. Enter it on the blue sheet and also on the white sheet labeled AUA
Symptom Score Summary. Hand the white sheet to participant to keep. Tell them their
score.]

If subject wants to take surveys home say need computer to score and not a good idea.

108

American Urologic Association Symptom Index for BPH

Less Less More
than than About than

Not ltime half half half

at all in 5 the the the Almost
times time time time always

1. Over the past month or so, how often

have you had a sensation of not

emptying Your bladder completely

after you finished urinating? _
SCORE 0

“I
“I
”I
“I
VI

2. Over the past month or so, how

Often have you had to urinate again less than

two hours after you finished urinating? _
SCORE 0

”l
”I
”I
"l
LII

3. Over the past month or so, how often

have you found you stopped and started

again several times when you urinated? _
SCORE 0 l

”I
WI
’|
M

4. Over the past month or so, how often

Have you found it difficult to postpone

Urination? _
SCORE 0

“I
”I
”I
“I
{It

5. Over the past month or so, how often
have you had a weak urinary stream? _
SCORE 0

 

”I
“I
DJ
A
M

109

6. Over the past month or so, how often

Have you had to push or strain to begin

urination? __ __ __ _ _ __
SCORE 0 1 2 3 4 5

7. Over the last month, how many

times did you most typically get up to

urinate from the time you went to bed at

night until the time you got up in the

morning? None 1 time 2 trns 3 trns 4 trns 5 & up

AUA Symptom Score = sum of questions 1-7 =

Scoring Key

Mild symptoms: 0-7 total points

Moderate symptoms: 8-19 total points

Severe symptoms: 20-35 points

American Urologic Association Symptom Score Summary

Your AUA symptom score is

 

This means your symptoms would be considered as:

  

MILD

MODERATE

SEVERE

110

BPH Impact Index

The next set of questions is a little different. They ask how bothersome you find any
symptoms you may have.

Q [Read questions and possible responses]

1. Over the past month, how much physical discomfort did any urinary problems
cause you?

__ None

_ Only a little
_ Some

__ A lot

__ Refused

2. Over the past month, how much did you worry about your health because of any
urinary problems?

_ Not at all
__ Only a little
__ Some

__ A lot

__ Refused

3. Overall, how bothersome has any trouble with urination been during the past
month?

_ Not at all bothersome
_ Bothers me a little
_ Bothers me some

__ Bothers me a lot
_ Refused

4. Over the past month, how much of the time has any urinary problem kept you
from doing the kinds of things you would usually do?

_ A little of the time
__ None of the time
_ Some of the time
_ Most of the time
_ All of the time
_ Refused

111

BPH Knowledge Questions

The next group of questions will tell us how much you already know about benign
prostatic hyperplasia or BPH. No one should know the answers to all of these 20
questions. We will ask you the same questions again at the end, to see how much the
video supplied the answers. At that time, we will give you the answers if you like.

1. The prostate is a small gland that helps purify the urine.
. __ True __ False ____ Not Sure

2. Symptoms of benign prostatic hyperplasia (BPH) can become less bothersome
over time without treatment.
__ True _ False _ Not Sure

3. An enlarged prostate gland can cause a change in urination, such as a weak urine
stream.
__ True _ False _ Not Sure

4. Men bothered by uncomplicated benign prostatic hyperplasia (BPH) generally
have a choice between prostate surgery and simply following their condition with
their doctor (“watchful waiting”).

_ True _ False _ Not Sure

5. When your doctor checks the prostate gland with a gloved finger, he or she can:
_ Feel some prostate cancers

_ Check the kidneys

_ Both of the above

_ Neither

_ Not sure

6. Most men with benign prostatic hyperplasia (BPH) who decide against surgery
are treated with drugs.
_ True _ False __ Not Sure

7. Benign prostatic hyperplasia (BPH) occasionally causes:
__ Damage to the kidneys

_ Damage to the bladder

_ Both of the above

__ Neither

_ Not sure

8. Men who have benign prostatic hyperplasia (BPH) have a higher risk of which of
the following conditions:

__ Prostate cancer

__ Urinary tract infections

112

__ Both of the above
__ Neither
_ Not sure

9. The main purpose of surgery for benign prostatic hyperplasia (BPH) is:
_ To reduce bothersome urinary symptoms

_ To reduce the risk of death from BPH

__ To find small prostate cancers

_ Not sure

10. When a man cannot urinate at all due to a large prostate, a tube must be passed
through the penis into the bladder to drain the urine.
__ True _ False _ Not Sure

11. Men who have small prostate cancers, found when an operation is done for benign
prostatic hyperplasia (BPH):

_ Almost always need to be treated

_ Usually do n_ot die from prostate cancer

_ Both of the above

_ Neither

__ Not sure

12. The standard prostate operation for benign prostatic hyperplasia (BPH) lowers
your firture risk of prostate cancer.
_ True _ False _ Not Sure

13. Some men who follow “watchful waiting” for their prostate condition:
_ Will eventually need an operation because they can’t urinate at all?
__ Will eventually need an operation because their symptoms get worse?
_ Both of the above?

_ Neither

_ Not sure

14. Men with benign prostatic hyperplasia (BPH) who choose not to have prostate
surgery should see their doctors once a year or so to check on the condition of
their prostate.

_ True _ False _ Not Sure

15. Most men have persistent trouble with dripping urine or wet pants after prostate

surgery.
_ True _ False _ Not Sure

16. Some men who have prostate surgery for benign prostatic hyperplasia (BPH)
eventually need another operation because the prostate tissue grows back over
time.

__ True _ False _ Not Sure

113

17. The most common kind of prostate surgery requires:
_ An incision (a cut) made in the abdomen (belly)
_ A lighted scope passed through the penis
__ Both of the above
_ Neither
__ Not sure

18. Most sexually active men have difficulty getting sexual erections after surgery for
benign prostatic hyperplasia (BPH).
_ True _ False _ Not Sure

l9. Retrograde ejaculation means the semen goes into the bladder during a sexual

climax.
True __ False _ Not Sure

20. Only a few men who have prostate surgery have retrograde ejaculation after the
operation.
_ True _ False _ Not Sure

114

Medical Instructions Test
(S-TOFHLA)

Here are some medical instructions that you or anybody might see around the
hospital. These instructions are in sentences that have some of the words missing.
Where a word is missing, a blank line is drawn, and 4 possible words that could go in
the blank appear just below it. I want you to figure out which of those 4 words should
go in the blank, which word makes the most sense. When you think you know which
one it is, circle the letter in front of that word, and go on to the next one. When you
finish the page, turn the page and keep going until you finish all the pages.

I will stop you at the end of 7 minutes. Some of the questions ask about an X-Ray
preparation or Medicaid rights and responsibilities. These do not refer to you
personally but are simply part of the standard survey.

 

If participant asks questions, indicate you
aren’t supposed to answer, but they should
do the best they can. This includes
statements like “I’ve forgotten my glasses”

 

 

 

 

[Hand the participant the S-TOFHLA white pages to complete. Enter
start and stop time. Stop at the end of 7 minutes whether finished or not]

Start time

 

Finish time

b [After retrieving the pages, go to the tab labeled Video Instructions]

 

115

Your doctor has sent you to have a

You must have an
asthma

X-ray.
a. stomach
b. diabetes
c. stitches
d. germs

stomach when you come for

 

 

a. a is
b. empty b. am
c. incest c. if
d. anemia d. it
The X-ray will from 1 to 3 to do.
a. take a. beds
b. view b. brains
c. talk c. hours
(1. look (1. diets

116

THE DAY BEFORE THE X-RAY

 

 

For supper have only a snack of fruit, and jelly, with
a. little a. toes
b. broth b. throat
c. attack c. toast
d. thigh d. nausea
coffee or tea.
After , you must not or drink
a. minute, a. easy
b. midnight, b. ate
0. during, c. drank
d. before, d. eat
anything at until after you have the X-ray.
a. ill a. are
b. all b. has
c. each c. had
(1. any d. was

 

 

 

117

THE DAY OF THE X-RAY

Do not eat

 

a. appointment.
b. walk-in.
c. breakfast.

(1. clinic.

Do not , even

 

a. drive
b. drink

c. dress
d. dose

If you have any , call the X-ray
a. answers,
b. exercises,
c. tracts,
d. questions,

118

a. heart.
b. breath.

c. water.
d. cancer.

at 616.4500

 

a. Department
b. Sprain

c. Pharmacy
d. Toothache

I agree to give correct information to if I can receive Medicaid.

 

a. hair
b. salt
c. see
(1. ache
I to provide the county information to any
a. agree a. hide
b. probe b. risk
c. send c. discharge
d. gain d. prove

statements given in this

and hereby give permission to

 

 

a. emphysema
b. application
c. gallbladder
d. relationship

 

the to get such proof. I that for
a. inflammation a. investigate
b. religion . b. entertain
0. iron c. understand
d. county d. establish

Medicaid I must report any

in my circumstances

 

a. changes
b. hormones
c. antacids
d. charges

119

within (10) days of becoming of the change.

 

 

 

 

 

 

 

a. three a. award
b. one b. aware
0. five c. away
c. ten ' (I. await
I understand if I DO NOT like the made on my
a. thus a. marital
b. this b. occupation
c. that c. adult
(1. than d. decision
case, I have the to a fair hearing. I can a
a. bright a. request
b. left b. refirse
c. wrong c. fail
d. right d. mend
hearing by writing or the county where I applied.
a. counting
b. reading
c. calling
d. smelling
If you welfare for any family , you will have to
a. wash a. member,
b. want b. history,
c. cover c. weight,
d. tape d. seatbelt,
a different application form, we will use
a. relax a. since,
b. break b. whether,
c. inhale c. however,
(1. sign (1. because,

120

the on this form to determine your

 

 

a. lung a. hypoglycemia.
b. date b. eligibility.
c. meal 0. osteoporosis.

d. pelvic d. schizophrenia.

121

Index of BPH Tape

Information Presented Time

Introduction

:46
Introduction with voice over (before narrator starts speaking), words/phrase on screen,
then shows men from testimon'es.

Narrator introduces tape
1:00
Welcomes, explains shared decision making

Introduction to BPH

Diagram of prostate, bladder, urethra, diagram of enlarged prostate,
symptoms appear on screen, discussion on questionnaire, narrator asks
men to complete if haven't already done so.

Living with BPH

Narrator discusses questionnaire scoring, testimonies begin.

Robert Doringto_n (W) frequent urination, enlarged prostate, must get up 2
to 4 times during the night to go to the bathroom, needs to be prepared.
Narrator

Peter Nixon (W) he entertains with his business (lunches, dinners)
bothered by frequent bathroom stops.

Narrator

William Proctus (W) construction worker, not getting refreshing sleep
because of frequent bathroom trips during the night.

Narrator

Peter msey (W) could not urinate, needed catheter to drain bladder
(acute retention)

Narrator

Screen showing complication of BPH

Diagram Narrator

Chart of symptoms of BPH over time

Chart of BPH changes (data from study)

Narrator

6:39

Do you need Treatment? :52
Narrator — may not need treatment if you don't have problems urinating.

Three types of treatment options
1) surgery, 2) drug treatments, 3) medical devices

122

Narrator says which treatment you choose is personal based on how bothered you
are by your symptoms

Watchful Waiting 3:02

Narrator says it's the lust line of defense, monitoring condition, active strategy
Peter Nixon good advice from doctor

Robert Doringt_on doesn't want medical treatment

Narrator offers tips for managing BPH, such as avoid alcohol fluid, avoid
decongestants, take extra time when urinating

Benefits - symptoms may improve

Drawbacks (shown on screen)— 5-12% acute retention, may have
complications with surgery (because you'd be older), living with

obstructed bladder over long periods of time, bladder

deterioration/ inflection

Evaluating a Treatment 2:28
Narrator — if symptoms really bother you, there are three options (surgery,
drug treatments, medical devices) Brief explanation of each.
Narrator poses questions to ask
Chances of getting better? (chart) How much
better will I get? (chart) How long will
treatment work?
What are chances treatment will cause problems?
How reversible are treatments?

Drug Treatments 5:35

Narrator discusses medical treatments (alpha blockers)
Diagram of bladder, Chart with moderate condition, chart with all
conditions.
Alpha Blockers (words on screen) Symptoms
improve within weeks
Can be useful for small or very large prostates
Long term effects not known Tera,
Doxam, Tam.
May lower blood pressure
Side effects — 15% need to stop taking drugs because of
undesirable side effects
Robert Trocchi (W) uses and has positive results. Symptoms reduced but
may forget to take pill which is very noticable the next day.
Narrator discusses Finasteride
Diagram is shown of bladder and prostate. Chart of
improvements
Words on screen — slow acting, works better with larger prostate, reduce
acute retention.
Chart with F inasteridelw/o F inasteride

123

Words on screen discussing short and long term effects
Chart with placebo

Narrator states these may not work for everyone.

John Shea (W) didn't work

Surgical and Device Treatments . 10:08

Narrator — surgery offers best chance for improvements, but also highest risk of
complications. In surgery not all the prostate is removed so one should not select
surgery as a means of preventing a firture prostate cancer. Any surgery exposes one to
risk (death or complications from surgery)

Overview of options:

TURP — with diagram

Chart with 88% improved.

Words on screen — spinal anesthesia, short hospital stay, maximum relief may take
several months.

Narrator—different men have different experiences

Ed Farr (W) not painful, body healed, comparable to visiting the dentist Cartland
Dugger (B) lots of pain, it's more than minor surgery, asked himself he this was going
to get better, overall was a program of rejuvenation, more energetic, sleeps well and
has more pleasant days Narrator presents statistics on TURP (N O chart)

TURP diagram

John Shea (W) disappointed with his TURP stills needs to urinate frequently,
doesn't know what else to do.

 

TUlP diagram - only effective with men with smaller prostates Chart — 80%
improved

Words on screen — no hospital stay, short-term — symptoms of relief are similar to
TURP (Iess complications), long-terrn effects are not well studied.

Narrator presents TUNA and TUMT together.

Words on screen — not as well studied, symptom improvement higher than drugs. Not as
high as TURP

Chart — 50% improved

Words on screen — no hospital stay, symptom relief takes about a month, may require
catheter, may not be covered by insurance.

Narrator introduces Peter's situation.

Peter Halissey (W) went with a TUNA because chance of impotency and incontinence
were much lower, TUNA appealed to him.

Open Prostatectomy — diagram — most direct way to deal with BPH Narrator -
may be needed if have very large prostate

Open Prostatectomy Chart — possible improvements

Words on screen — general/ spinal anesthesia, requires several days in hospital.
longest recovery time, highest rate of complications.

124

Complications of BPH 8:41

Narrator - potential problems - health risks, side effects, death Chart -

Chance of Dying - shows out of 100 for OP, TURP, TUIP Chart - another
chance of dying chart '

Words on screen (Complications) - infection, blood transfirssion,scarring Chart -
Infection (OP, TURP, TUIP)

Chart - Transfussion (OP, TURP, TUIP)

Chart - Scarring (OP, TURP, TUIP)

Narrator - fear of problems with sexual function/erection (not clear whether BPH
effects sexual functioning) lots of myths, old information Diagram (retrograde
ejaculation)

Narrator - briefly discusses retrograde ejaculation

Raymond Taylor (B) some sensation with retrograde ejaculation, weird for him, still
is troubled with it.

Cartland Duager (B) ejaculation doesn't feel as good, but intensity is

improving

Chart - Chance of retrograde ejaculation (OP, TURP, TUIP, Alpha Need for
Blockers, Finasteride) Retreatrnent
Narrator briefly mentions erectile dysfunction

Chart - Chance of erection problems (OP, TURP, TUIP, Alpha Blockers, Narrator " no
Finasteride) optron ‘3
Narrator discusses more about sexual functioning perfect
John Kgpuk (W) desire down, but still gets erection, plumbing is all

screwed up, doesn't desire sex '

Narrator mentioned incontinence, oflers numbers about TURP (no chart)

Two types of incontinence (stress and total)

Chart - Chance of incontinence (OP, TURP, TUIP)

Narrator mentions weighing options.

Richfll Martinez (W) problems reoccurred Narrator
explains why some problems may reoccur Chart -
retreatrnent out of 100 (TURP, TUIP, OP)

125

Other Treatment Options 1:39

Narrator presents other possible options

Words on Screen — ultrasonic device, ????? dialectic??, prostatic stent
Narrator presents notion of Saw Palmetto

Diagram of plant

Words on screen — studies show conflicting results
John Shea (W) used saw palmetto, thought it was working well in
beginning, but wasn't, used it for 9 months

Words on screen regarding saw palmetto — use extract (herbalists suggest), take
under medical supervision.

Summary 3:36

Narrator refers to patient guide

Chart with treatment results (Surgery, TUNA, TUMT, Drugs, WW) Robert
Dorrington (W) BPH is annoying, but can live with it. Narrator — don't
be afiaid to talk about it

Peter Halissey (W) writes down what to talk to doctor about, goes to doctor
with own best interest in mind, considers all options Narrator — summary
thoughts

126

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