This is the second article in a two-part series by Aana Vigen on
"Listening to Women of Color with Breast Cancer: Theological and
Ethical Insights for U.S. Healthcare." Click here for
part 1 of this series.
[1] These women who have survived or are living with breast
cancer shared a great deal of embodied wisdom with me. They know a
lot because they have been through a lot. They see and appreciate
what is good in some healthcare contexts and what is problematic in
others, and they offered up descriptions of what most matters to
them as particular persons. What I have learned from them has
significant implications for healthcare quality discussions. My
questions now are: "What has to be in place in healthcare
institutions for these themes to be more adequately addressed
within the cultures and practices of healthcare than they are now?
How might healthcare organizations and providers heed the wisdom of
these women?"
[2] As a way to explore these questions, I will use the four
themes as guideposts (the interplay of racial and socio-economic
assumptions, the imbalance of power dynamics in the
patient-provider relationship, the role and necessity of advocates
and self-advocacy, the impact of bureaucratic processes and
financial bottom lines) in order to reflect upon what they mean for
the doing of healthcare. In making connections between these themes
and ethical implications, I will touch upon four constructive
possibilities for healthcare and medical ethics.
Racial and Socio-Economic Assumptions and Power
Imbalances
[3] The combination of these assumptions with the imbalance of
power dynamics inherent in patient-provider relationships is potent
and potentially deeply alienating. Undeniably, all breast cancer
patients are in a position of relative vulnerability to their
oncologists given that the patients are physically compromised by
cancer and depend on their doctor for care and help. However, it is
clear that communities of color, along with those who are poor
and/or who lack health insurance (or who have inadequate medical
coverage), experience additional forms of vulnerability. Indeed,
they are doubly or triply at risk because they may not be able to
access care as easily and they may carry the burden of providers'
assumptions related to race and/or socio-economics.1
[4] Race and class are distinct but interwoven realities within
U.S. mindsets and social structures. While they cannot be
conflated, their intersections need to be understood. The
combination of racial-ethnic and class assumptions can make a huge
difference both in terms of the degree of access and visibility
that darker skinned women have when negotiating healthcare as
compared with lighter skinned women. Having excellent insurance
coverage does not magically dispel these assumptions from the minds
of care providers.
[5] Sophia's sense that providers expect her to change their
minds reveals a lot. There is something
seriously-systemically-wrong when patients such as Sophia feel the
burden to change provider assumptions-to demonstrate that they are
"different," "one of the good Black Puerto Ricans" so that
providers will be deeply invested in doing the absolute best they
can for them. It is an unjust burden for her and others to bear.
Given the relative power differences, the burden ought to fall on
the providers-to work harder to know, understand and care for the
patients who are most different from them. For it is in these
scenarios where misunderstandings, mistrust and poor communication
are most likely to fester and cripple patient-provider
relationships, treatment plans and cure rates. In considering the
weight and prevalence of these assumptions within a context of
unequal power dynamics, two specific suggestions for change
surface.
Conclusion #1: Educating Providers to See Their Own
Assumptions
[6] Providers need to be attuned to the peril of
compartmentalizing people. Seeing patients primarily though the
lens of their physiological condition, insurance status or through
assumptions based on racial-ethnic and/or class background
diminishes and limits the quality of their care. Such narrow vision
can render the actual persons invisible.
[7] Healthcare systems and practitioners need to understand that
it is unjust to hoist the burden of changing provider assumptions
onto patients. Instead, healthcare institutions and practices can
and ought to support the seeing and understanding of the social
contexts in which these lives are situated. Simply put, we-as
providers, ethicists, healthcare practitioners and professionals,
and theologians-need to do our homework. For holistic care to be
comprehensive, appreciation of the person as embedded within a
network of socio-economic, cultural, familial and political
relationships and structures is needed in addition to attending to
her physical, spiritual and intellectual dimensions.
[8] Antonia spoke to these qualities when she described the kind
of doctor she hopes to become:
The kind of doctor that I
want to be is a doctor who . . . truly, truly wants what's best for
the patient, and is not just looking at the patient as an illness,
but is learning about who that patient is, learning about their
background, about the family home life, what's going on with them .
. . You're constantly learning about diseases and illness [in
medical school]. And a lot of times, you're not exposed to
patients. And, but when you are, and you get that little piece of
information about them which fascinates you-something you find out
about them, and you're like, "Wow, this is a person who has a life,
this is a person who has dreams." And you just learn so much more
about them.
Rather than using such contextual information to stereotype a
person, the provider can use it to be attentive to the complexity
and richness of every human life. When doctors possess these
skills, they stand out. Antonia observes: "But I personally have
seen many, no, I've seen a few white doctors who are amazing to all
their patients . . . [T]hese physicians who are amazing were
culturally competent. They were respectful. They were
understanding. And it's interesting how that can cross over all
cultures (emphasis hers)." I take heart in knowing that at least a
few of Antonia's white mentors get it.
[9] Antonia mentions an important and increasingly discussed
concept: cultural competence.2 There are many possible
strategies for enculturating such understanding. I would like to
highlight the need for intensive cultural competency
training. By cultural competence education, I mean integrated
attention to racial-ethnic, socio-economic, linguistic, cultural
and religious particularities that shape patient needs,
perceptions, experiences of health and illness, needs and fears
with which they contend. Such education must teach both
appreciation of the complexity of others' lives as well as critical
self-reflection. Said differently, ethicists and providers need to
analyze in-depth the socio-economic contexts of healthcare
provision, and we need to articulate and attend to our own internal
assumptions and biases.
[10] The word integrated is important. One course or class
segment devoted to "cultural diversity" will not suffice. Instead,
a cultivation of these skills ought to be integrated throughout
courses as well as be reflected in how clinical training is taught
and modeled. Moreover, some curricula are better than others in
this regard. Some amount to little more than cataloging a list of
generalized (and sometimes stereotypical) descriptions of certain
cultural or linguistic habits, preferences, practices, etc. Others
require prolonged critical self reflection, analysis of power
dynamics and privilege, and the unmasking of stereotypes and
assumptions. Thus, the quality and ethos of the training and
curriculum matters a great deal.3
[11] Antonia worked for a not-for-profit organization before
going to medical school and still volunteers with women of color
cancer support programs. In light of these experiences, she
suggested that immersion in a racial, socio-economic and cultural
context that is different from the student's be a part of one's
professional development:
I think that everybody,
before they go to medical school, should really spend a year
someplace where they wouldn't see themselves. Just someplace where
they really have no clue about those people, or that group of
people . . . Yeah, just to sort of, you know, go away, go
somewhere, go to the Caribbean maybe, or go to Puerto Rico, or the
Dominican Republic, go to Cuba, come up to Harlem. They'll go to
East Harlem, spend time in a small HIV clinic. That's what I did. I
was a-I went to an HIV clinic for about six months, and I
volunteered there. It's putting yourself in the position to learn
from others . . . And just seeing something from a different view,
and being around people [who have a different
view].
Antonia is right that such experiences are a wonderful way to
prepare for medical school. However, given that all students may
not seek out these experiences on their own before gaining entrance
into a formal medical program, the schools need to provide them as
well. Immersion experiences, mentoring programs and clinical
experience in socio-economic and racial-ethnic contexts that differ
significantly from the student's are all ways in which assumptions
and beliefs might be questioned in ways which enrich understanding
and care. Sophisticated methods for critical self-reflection must
be a part of such curricular programs. Additionally, greater
emphasis on speaking and understanding second languages is needed
both at undergraduate and graduate curricular levels than is
currently oftentimes present.
[12] However, such suggestions may be hard to realize. The
cultures of many medical programs are predominately focused on the
important matters of learning the physiological and technical
dimensions of healthcare. Antonia herself does not expect her
formal education to teach her the skills of relating to
patients:
I wouldn't say there's an
actual push for us to really bond with patients-you know, to really
learn about the patient. But there are bits and pieces, sort of to
remind us, you know, that you-you're going into this medical
profession . . . You need to know how to communicate with your
patients, and that's very important. But I think it's something
within you. It's . . . very difficult to learn. It's not going to
be part of your medical education. You've got to either develop it
through experience or have it.
Antonia is right that such things are challenging to teach and
instill in another. Yet it gives me pause that she does not expect
such values to be part of her formal education. I wonder how many
medical students have similar experiences and expectations of their
curricula. I believe that some medical and nursing programs do
foreground an ethos of service to and understanding of our diverse
society; however, I am not at all certain of how widespread this
pattern is.
[13] There are opportunities to gain such skills after
graduation. Many hospitals periodically offer diversity trainings
to their staff. However, brief diversity trainings held for current
healthcare professionals can fall short of what is needed. Staff
sometimes view them as nothing more than a bureaucratic hoop for
accreditation. Indeed, a couple of the care providers were clear
that short diversity trainings do little to alter provider
assumptions. Beef Stew, a nurse case manager, was pointedly candid
in her criticism of them:
That's a bunch of bullshit.
Okay. Because how it is conveyed is not from a person of color.
It's from a person who says, "Okay, these people are complaining
about there's a problem. Okay, how do we be nice to them? Okay,
this is how we're going to be nice to them." . . . That's putting a
Band Aid on it. That's not, like, "Okay, well, let's try to
understand the problem, okay? This is a problem. Why is this
problem happening? . . . All right, now, how are we going to change
this to improve the dialogue between us, to improve the
communication so this doesn't happen again?" That's not the spirit
that it's coming from. It's coming from, "Look, okay, the
Department of Labor says we have to do this."
The impetus behind the training matters. It also matters if the
hospital and practitioners are open to rigorous self-critique, or
if they want to apply "Band Aids" that give an appearance of
serious attention to the issues. Indeed, interpersonal
communication techniques cannot be employed as "tricks" to build
trust with a patient. Attempts at understanding and compassion need
to be sincere. If not, none of the strategies will help much
because they are motivated by self-interest rather than concern for
others.
[14] Moreover, the narrow scope of these trainings and cultural
sensitivity courses can limit the scope of the analysis as
well. Some researchers contend that the culture of medicine
and the medical gaze may make it difficult for communities of color
and/or lower socio-economic classes to be seen as persons. For
example, Good and Good add that such classes often focus on the
culture of patients without incorporating social analysis:
Until recently, when
cultural analyses were proposed, the focus was largely on patient
culture. Burdens of difference were on patient communities, and
medicine and health professionals were expected to learn to be
culturally competent in attending to the diverse populations that
make up American society. When we are challenged to examine the
culture of medicine and of our healthcare institutions, we are also
challenged to bring a critical perspective that has largely been
ignored by most research to date or that has circumscribed cultural
inquiry to the differences between patients' and physicians'
"beliefs." Disparities in medical treatment are not simply matters
of differences in "beliefs." Clearly, political and economic
factors that shape our medical commons and our larger society are
implicated in the production of these disparities.4
Culturally competent care involves more than learning about
different foods, beliefs and religious practices of patients. It
must also rigorously and self-critically analyze the socio-economic
and political forces that structure healthcare institutions and
practices themselves.
[15] I asked Wanda who has been both a patient in and an
employee of hospitals how hospitals can engender respect for
persons:
I think you have those
culture sensitivity courses. And you stay on that. You-not just
have the courses, and then, okay, they've got the training, but see
how the staff is treating the patients. Walk around, you know, be
involved in something. Because what I think tends to happen is that
people will go-some hospitals offer the culture sensitivity course.
And then the staff will go. But then what happens after that? How
do you follow up and how do you make sure that they're doing what
they're supposed to do? Because, like I said, I worked in a
hospital, and I've see what happens. And even if you take culture
sensitivity classes, people don't follow, follow those things. So I
think having the higher-up staff oversee it, making sure that it's
being done, instilling that in their staff . . .
Wanda understands that periodic trainings will not change the
culture of institution. Real change must be consistently promoted
and instilled at all levels within the organization. In particular,
Wanda notes the importance of those in leadership positions. Akin
to mentoring medical and nursing students, administrative managers,
senior physicians and nurse managers need to see the value and need
for such efforts and change.5
[16] While a simplistic "top down" approach can alienate staff,
so too will efforts flounder at the staff levels if change is not
supported by the leadership of a hospital. Both levels need to be
engaged for cultural competence to take hold within the practices
and sensibilities of care settings. Instilling such awareness and
sensitivity is a complex process of moral and professional
formation to which both honest self-criticism and social analysis
are integral.
Conclusion #2: Emphasizing Healthcare Leadership of
Color
[17] Apart from the ability to cross cultures to build trust and
understanding, there is also the matter of increasing the number of
providers of color. More leadership of darker skinned people within
healthcare will transform the cultures of institutions in ways that
no number of diversity trainings can. Some quantitative studies
have found that race concordance between patients and doctors aids
patient satisfaction. Undeniably, many patients and doctors succeed
in creating strong bonds regardless of race concordance or its
absence. However, having more staff of various racial-ethnic
backgrounds will affect medical cultures and assumptions in ways
that are both broader and deeper than a singular focus on
cross-cultural patient-provider relations. For example, care
providers of color might propose changes for how various religious
traditions are accommodated, for how language translation services
are provided and for how a hospital connects with its surrounding
neighborhoods and communities through education and prevention
programs.
[18] Such diversity among healthcare providers is especially
needed at leadership levels-senior physicians and medical school
faculty. Beef Stew observes that there are numerous staff of color
at her hospital, even doctors, but not in leadership roles:
"(T)here's plenty of doctors of color. I'm talking managers. I'm
talking head honchos. I'm talking calling the shots. I'm talking,
you know, nurse managers, vice presidents, CEOs, board of trustees.
That is what'll make an impact." For substantive changes to take
hold, is not sufficient to have a diverse staff at the level of
technicians, nurses, nurse assistants and clerical
support.6
[19] Presently, the racial-ethnic diversity represented within
the general population is not reflected in the population of
healthcare providers. Latinos represent fourteen percent of the
total population and that Blacks represent thirteen percent of the
total population. Yet Latinos "make up 2% of registered nurses,
3.4% of psychologists, and 3.5% of physicians . . . and while one
in 8 Americans is black, fewer than 1 in 20 physicians or dentists
is black."7 The Association of
American Medical Colleges reports that as of 2000, nine percent of
all medical school graduates are members of one of these four
communities: African American, Asian American, Latino, and Native
American. One current estimate is that within this total
percentage, Latino graduates comprise 2.25 percent of the total
population of medical graduates.8 Latinos now constitute
the largest and fastest-growing ethnic community (comprised of many
differing racial-ethnic and cultural communities) in the United
States. Yet their numerical growth within the ranks of healthcare
professionals continues to sputter.
[20] Unfortunately, change in this reality does not look
promising. The New York Times recently reported that the current
administration's budget does not see leadership of color as a
priority: "President Bush's budget would cut spending for the
training of health professionals and eliminate a $34 million
program that recruits blacks and Hispanics for careers as doctors,
nurses and pharmacists."9 It is disturbing that
such cuts are being proposed even as the administration has been
criticized for trying to downplay the realities of racial-ethnic
disparities in healthcare.10
[21] Having drawn this conclusion, it is also important to not
see the problem only as one of numbers. Good and Good make the case
that the medical gaze is potent in training students to focus in
upon certain information relevant when listening to and giving care
to patients. In short, students of whatever color are taught to
"speak the language of medicine." They argue that this culture is
strong and pervasive even though there has been "a sea change in
the gender, and to a lesser extent, the racial and ethnic profile
of medical students. In addition, extraordinary developments in
medical technology, biomedical science, and the political economy
and financing of medicine and the delivery of healthcare appear to
be subsumed into this culture and way of learning
medicine."11 Having more providers
of color is essential, but it is not a simple solution to the
complex nest of problematic disparities. The very way in which
medicine and healthcare are taught needs substantial revision as
well. Furthermore, ongoing race and socio-economic class analysis
is needed on the part of healthcare providers, students and
educators.
The Imperative of Advocacy and the Impact of
Bureaucracies and Bottom Lines
[22] After surveying the extensive and growing medical
sociological literature on healthcare quality disparities and
interviewing a few patients and care providers, I have come to the
conclusion that radical changes are needed in the structures of
U.S. healthcare provision. Piecemeal approaches cannot sufficiently
address systemic problems. A system where doctors are reimbursed
different amounts for different patients-or even worse where they
are compensated to attend to some but not others-already sets up
structural care disparities in which some lives are more valued
than others. Indeed, the political economy embedded within the
financing, organization, and delivery of healthcare dehumanizes
some by making available to others (those with the financial,
political, and social resources) healthcare that is more
comprehensive and better matched to their health needs and cultural
backgrounds. Simply put, initiatives aimed at making individual
providers more sensitive will falter miserably if they do not
address the economic systems and institutional cultures in which
the providers are supposed to learn and practice this
sensitivity.
[23] To make this case does not mean that no poor person or
person of color receives good care. In fact, many, many do-the
women with whom I spoke testify to this fact. Rather, the point is
that regardless of the fact of whether or not some individuals
encounter exceptional care, skill and compassion, an intrinsically
unjust system is in place which contradicts the egalitarian
principles and ideals to which it aspires. As Leonard Orlando, a
white oncologist, put it to me in our conversation, "I'm very
idealistic, and it's very important for me to be a human,
humanistic. But I don't think the environment supports that . . .
(T)he system promotes-encourages us to be otherwise." Cavernous
disparities in care due to combinations of access and quality
issues mock and transgress the moral obligations of a democratic
society. Therefore, the fact that some lives are more fully seen,
valued and respected than others represents a serious moral problem
with which ethicists, healthcare policymakers and theologians all
must wrestle. In response to the failings of present structures, I
offer two specific recommendations.
Conclusion #3: Funding and Support of Community
Networks
[24] Several of the women told me stories of how they were only
able to access acceptable care because of a friend or a contact in
a healthcare network that helped them make a change: María's
daughter sought out care at another hospital; Luz would not have
been able to get into a site of care she preferred without the help
of a friend and the friend's sister-in-law (a nurse). As a nurse
case manager, Beef Stew acknowledged that while she does her job
for every patient, she takes additional time to educate patients
who do not have many resources at their disposal.12
[25] In short, without advocating for themselves along with the
advocacy of others, many would have remained in care settings with
which they were neither satisfied nor comfortable. Quite literally,
advocacy and connections help you be seen. Consequently, I find
that community not-for-profit support and information networks
provide vital services to women. They help them process everything
they are going through and make informed decisions.
[26] I shudder when I contemplate the traps in which those who
are ill and who do not have these networks or connections-those who
are timid or isolated-may find themselves.13 One of the breast
cancer support group facilitators coordinates a Latina group to
which predominately new immigrants come. Many of the participants
speak only Spanish and some are undocumented. Many have no benefits
or health insurance and find it difficult to attend the support
groups after they are well enough to work. They cannot afford to
stay at home during their recovery because of their need of the
income, however meager.
[27] This facilitator explained to me that many of these
immigrants are scared-because of the cancer, because of their
immigration status, and because of their very limited income
levels. She observed that many of them come from cultures in which
it is expected that patients trust their doctors and do not ask
questions. These insights gave me a sense of why I may not have
heard more immigrants complain about the quality of their care when
I spoke to them at the support meetings. Indeed, the facilitator
said that many of the Latina immigrants she has worked with are so
afraid of dying or being deported that they are simply grateful for
whatever care they do receive-even if there are no translators or
doctors are rude, inattentive or hurried. Without groups such as
The Witness Project of Harlem, Share, Cancer Care and Gilda's Club,
many women would not have a safe place to ask questions, learn
about their disease and treatment options and receive emotional
support.
[28] Moreover, these organizations intensively work to create
deep connections in the communities they serve. Rather than using a
white staff person coming to facilitate a group in Harlem or
Queens, for example, all of the above organizations make it a
priority to have group facilitators who share the cultural and
racial backgrounds of the communities in whichthe groups take
place. More ample funding and support of such community networks is
essential.14
[29] Unfortunately, these non-profit organizations, which rely
heavily upon volunteers and donations, are not prioritized in
healthcare funding budgets. Community health
programs-community-oriented prevention and educational
services-tend not to be emphasized by either government or private
healthcare institutions. Many of the organizational representatives
spoke to me how strained their budgets are and how precarious their
futures can be from one year to the next.
Conclusion #4: The Value of Continuity and
Choice
[30] All patients benefit from the opportunity to work with the
same provider over time so that trust and rapport can develop. On
the other hand, they also benefit from being able to switch
providers if they are uncomfortable with their care in a given
setting. Given the social, economic and structural power
imbalances, patients of color and/or lower socio-economic status
need to be able to keep or change a given provider without fear of
losing healthcare coverage. Hannah's story describes the experience
of one woman who, because of the comprehensive and generous nature
of her health plan, has felt free to interview prospective doctors
as needed before settling on one. And once she has made her choice,
she has not had to worry about a change in doctors being made
without her involvement.15 What amazes me is that
Sandra, temporarily without insurance, forged ahead and switched
doctors until finding one to whom she could relate to as a person.
And it is important to note that she was able to do this both
because she is a strong woman who is also a well-educated nurse and
because she had nurse friends and contacts helping her to
navigate her way through this harrowing time.
[31] While having excellent health insurance is not a guarantee
of receiving excellent care, what it can do (both
literally and metaphorically) is buy more time. Not having to worry
about what services and tests will be reimbursed or how many visits
will be covered can create a context in which there are sufficient
opportunities for women of color to break down provider assumptions
and to build up relationships. Sophia's story represents one
example of this transformation. She was clear that when her breast
cancer was first diagnosed, she was able to get through to her
doctors because she and they knew that they would be working
together over time. There was continuity of care. She developed a
strong relationship not only with her breast surgeon, but with her
oncologist and the nurses and nurse practitioners as well. As a
team of providers and as individuals, they crossed their cultural,
racial, and socio-economic differences to come to know Sophia as a
unique and valuable person.
[32] The point is that such transformations take time. When I
asked Sophia how it is possible for providers of differing
backgrounds from a patient to create genuine relationships and to
see the patient as a person instead of as a stereotype, she
remarked that: "Unfortunately, it's not something that you can go
in and change off the bat, like with people of the same race. Like
if a white person goes in to see the doctor, there are no defenses.
You know. Unfortunately, with me personally, it's something that
comes in time." I then added, "So it's kind of like you have to
work harder." Sophia responded: "Yeah. It's something that
you-that, in time, kind of works itself hopefully and just
disappears. And there's always the little underlining of, "When are
they going to show their true colors?" . . . Yeah, like, you know,
I don't think now they think that there are any true colors. You
know? I think they see this is her true color. But I, you know,
that took - that takes a little longer."
[33] Ultimately, this need for continuity and choice means that
universal healthcare needs to get back on the table as a serious
topic for healthcare policy reform. Since the 2000 election, the
bulk of congressional healthcare debate has taken the form of
prescription drug coverage for seniors and what to do with respect
to the internet availability (and substantially lower prices) of
Canadian prescription drugs. Prescription drug coverage is a topic
worthy of public debate. By itself, however, it makes for anemic
healthcare reform. Current political platforms are a far cry from
the healthcare reform agenda on which Clinton and Gore ran in 1992.
Twelve years later, a comprehensive approach to healthcare reform
is sorely absent from the public scene.
[34] A form of universal healthcare may help to make healthcare
less of a private commodity purchased by some and more of a public
service provided to all. Without universal coverage, providers are
compensated differently for different patients. Leonard, the white
oncologist, laments that he cannot take Medicaid patients because
the rates do not adequately compensate his services. Even as he
defended the free market economy, he cautiously noted: "[C]ancer
care is so complicated and comprehensive that it's hard to do a lot
of pro bono work. But it wouldn't matter, a patient's economic
status, if [doctors] had full-time positions. You know? With just a
set salary."16
[35] Leonard also noted that there ought to be fewer
administrative hassles in order to give more time and better care.
He complained that his days are too occupied by the piles of
paperwork-not done only as medical charting-but as formulaic,
duplicative documentation for insurance companies. Rebecca
Williams, a white oncology social worker, also commented that her
main frustration is that she has to spend an inordinate amount of
time on paperwork, instead of offering psycho-social support to
patients. Discharge planning has a tangible benefit to the
hospital's finances; sitting with and listening to patients do not.
Again, Leonard expressed a similar sentiment: "(M)y salary is very
much tied to my productivity . . . And the reality is . . .that
insurance companies [don't] pay for an emotional investment, really
. . . You know, not that one wants to, you know, bill, you know,
for compassion . . .But the point is that there are constraints
that are very much in place that force one to kind of keep moving
forward and moving ahead."
[36] Of all these collaborators who shared enlightening insights
and experiences, Sophia spoke with the most candor and critical
reflection. She had no trouble naming the fact that human beings
arbitrarily create systems of meaning (such as those focused on
wealth) and that in doing so, we have fashioned a world light years
away from what God wants for us. In not shying away from stark
honesty, her words took on a prophetic quality for me. Akin to all
genuine prophets, she knows that being real and speaking truth can
put one in danger-they can "end up in the loony bin." I heard this
prophetic voice most clearly at the end of our interview when
Sophia described the ideological framework in which U.S. healthcare
is conceived and given. Her incisive analysis needs no further
introduction or commentary from me. Its wisdom speaks for itself.
Indeed, without realizing its Greek meaning, Sophia chose her
pseudonym well.
SA: It's this world that we've created. And
money is something that's created. And, you know, gold is in the
ground, I mean, that's, like, free, really, when you think of it.
You know, we've made this-we've given it so much importance. And
when you think about the rest of the world, like the backwoods, and
we think that they're really primitive, but places in Africa and
places in Nicaragua and places all the way back in the hills, they
have medicine men who cure people. And they would never think of
taking a dime for doing what is the most natural thing to do in
this world, which is make you well if you are sick. People will
give them food and give them donations. And . . . but they
would never think of taking money for something that, in their
eyes, is a God-given gift. And, you know, I think, you know, there
are a lot of healthcare providers and healthcare facilities that
try, you know, to do things. But in the math, in the math of it,
you know, medicine is a corporate business. It's not a business of
sacrifice like that anymore. I'm not saying that everybody's like
that. And there's healthcare professionals out there who do. But I
think self-sacrifice is, like, such a big thing. And I think that
God would like that.
AV: But the context of the institution or the
system isn't set up to facilitate that.
SA: No, no. And it all comes down to the almighty
dollar that we ourselves have given all this importance to. Well,
we still have to pay our bills and all that. I mean, there's got to
be-I guess for people who don't have the same kind of faith, they
have to have something to hold onto, and something that is
important. So you can make up anything and make it important. I can
make that picture important. I can make it the most important thing
in this house, you know. But it really-that's what it is. It's not
real.
AV: No.
SA: And I think that's what God wants. I think
that's what God wants from all of us. You know?
AV: Yeah.
SA: It's really, really out there, though.
AV: No. But it's also just right here.
SA: Yeah. It's right here, which is why nobody's
going to do anything about it.
AV: It's too close.
SA: It's too close. It's too real. And people that
tend to be too real are the ones that end up in the loony bin.
Why These Stories Matter: Methodological Implications
for the Doing of Ethics
[37] Before drawing this work to a tentative close, I would like
to discuss one last relevant area of analysis: implications this
research has for the doing of social ethics itself. The conclusion
I draw is simply this: It matters who is at the table. My research
does not portend to solve the various problems related to
healthcare disparities. Neither my desk nor brain is big enough to
bear to such weight. In other words, no single person or group is
able to arrive at such a resolution. Indeed, well apart from
offering the above constructive points for changes in healthcare
delivery, I seek to contribute to changing the way in which we as
academics search out these answers. Not only does the content of
decisions fundamentally matter, but the process used to come to
them matters as well. It is my conviction that adequate and
dynamic understandings of dignity, respect or personhood only
happen through the course of sustained and broad relationships and
conversations in particular communities-and out of profound
dialogue across difference. Moral deliberation and formation are
neither one-time nor individual events. Even more, they are not the
sole property of scientists, policymakers or academics.
[38] This insight is as true for theology, the social sciences
and healthcare policy as it is for social ethics. Across
disciplines, a shift is needed in how we think about and tackle the
pressing problems and questions facing us. With respect to
healthcare quality disparities, those who have most directly
confronted healthcare quality disparities ought to be at the tables
and involved in setting the terms of the conversations convened to
eradicate them. We need to find the answers together. Ethicists,
physicians, social scientists, healthcare policy analysts and
theologians all need the knowledge of those who may be laypersons
with respect to our fields, but who know viscerally what it means
to feel disrespected and disregarded in society.
[39] James Spradley begins The Ethnographic Interview
with a basic but crucial distinction: "Rather than studying
people, ethnography means learning from
people."17 In order to learn from
people, you need to assume you do not already know what they are
going to teach you. Spradley goes on to acknowledge: "Ethnography
starts with a conscious attitude of almost complete
ignorance."18 The value of this
insight is multifold and it is not limited to those in academia.
First and foremost, I-whether I am a white scholar, activist,
teacher, social worker, doctor, friend, or church member-will learn
more if "what I think I know" does not get in the way of actual
learning and listening. An even bigger payoff, especially in terms
of the formation of a white scholar, is that when one is not overly
focused on being an expert, but rather on being a person, there is
great potential to cultivate humility both within one's vocational
endeavors and inner spirit.
[40] Moreover, there are ramifications here not only for
individual scholars, but for entire disciplines. To put it bluntly:
White scholars may profit greatly if/when we spend significant,
sustained time and energy outside of libraries/offices and
inside a variety of relationships and activities. I
came upon inequalities in healthcare not primarily by deducing the
problems from books of social theory, ethics and theology, but by
listening-to patients, loved ones, and staff-and by working in
relationship with them.
[41] In a related vein, it would be helpful if more academics
would push ourselves to speak and hear fluently second and third
languages-not only to read or translate them. Even if English is a
common language between a researcher and the people with whom she
is working, meanings cannot be taken for granted. Semantic
differences, even when the same language is being spoken, ought not
be overlooked.
[42] For example, especially when I, a white person, attempt
qualitative research within communities of color, I do not want
participants to translate meanings for me, to cease speaking their
own language and begin to speak in ways that are more familiar to
the white, and/or professional ear. If I want to hear people in
their own voices, then they need to not alter what they are saying
to overly-accommodate me. The burden is upon me, the white scholar,
to understand (or to learn to understand) what others are
saying-their experiences, culture, worldview-in the fullest sense
possible.19 Of course, the persons
with whom I am working will always be accommodating me to a degree
and every description is a translation. But the important point is
that I must make every attempt possible to ensure that my
descriptions flow as directly as possible from the concepts and
meaning of the people with whom I am working or
interviewing.20
[43] For white academics to engage racism and white privilege
adequately in our scholarship, we need to find avenues of contact
and relationship with the people who most directly confront racial
inequalities. Learning from scholars of color is vital and we need
to ever expand our treatment of their texts. Yet we ought not stop
here. The incorporation of works by scholars of color will be
stronger and more credible if it bears out in relation to concrete
movements, projects and experiences. It not only matters whom I
have read, but with whom I worship, eat lunch, volunteer on
weekends or evenings, lobby politicians and canvass the
neighborhood. It takes time and effort to cultivate the
sensibilities and skills within white academics that will curb the
presumptuous and self-righteous qualities often present in white
identity.
[44] While not all white scholars will do formal qualitative
fieldwork in their research, more ought to consider it. Moreover,
there are other avenues for similar involvement (volunteering with
grass roots organizations that address housing, poverty, education,
environmental racism, prison reform, healthcare or migrant labor
issues). I am well aware of the pressure to increase one's
scholarly credentials, namely to publish books and articles. But
perhaps an additional measure of an accomplished scholar ought to
be given more weight: The hours one spends working with community
programs dedicated to social, economic and racial transformation.
Perhaps seminaries, colleges and universities might more
intentionally promote and support the notion of a public scholar,
whose task in whatever field is not only to advance knowledge, but
to contribute concretely to the shaping of people and communities
in which the scholar lives and works.
[45] In sum, there is a claim upon all scholars in whatever
field (and of whatever racial-ethnic background) to envision and
create even a small corner of the good society. Intrinsic to any
such creation is a specific claim upon me, as a white person and
scholar, to cultivate sustained, concrete relationships with
communities of color in entirely different life situations and
vocations from myself. These kinds of practical engagements and
relationships are of paramount importance especially for white
scholars and other scholars of privilege. For if we do not get it
right in our day-to-day interactions and relationships, we won't
get it right in our scholarship either.
Catching a Glimpse of the Reign of God: What Solidarity
Means
[46] The theological case made by this dissertation is this: For
any theological description of what it means to be a child of God,
or made in the image of God (imago dei) to be adequate, it
needs to be concrete-incarnate-and reflective of the needs and
experiences of the most vulnerable-in a city, in a region, in the
world. From this theological starting point, I have argued in the
language of ethics that for any positive change in healthcare
quality to take place and last in institutional and interpersonal
ways of being, we need attuned and sustained listening to those who
occupy vulnerable positions in both society and healthcare
settings. I am trying to envision and articulate what justice and
solidarity mean and how they might be realized more fully, even if
imperfectly.
[47] Sustained and self-critical attention to those marginalized
by systems of injustice is the only basis upon which efforts at
solidarity are possible. Those in relative privilege (white,
middle- and upper-socio-economic classes, the well-insured, the
presently healthy, the educated, members of the First World) need
to not only "care" or "feel badly" about the plight of those less
privileged, but must also understand that we are both implicated
and accountable for their life situations. In responding to
economic globalization, Cynthia Moe-Lobeda defines solidarity this
way:
Solidarity entails seeing,
hearing, and heeding what is obscured by privilege: people and
other parts of creation destroyed, degraded, or impoverished by
five centuries of globalization, culminating in the contemporary
form. Said differently, people of economic privilege will seek out
and hear the stories of those who experience globalization as a
threat to life and will respond to those voices.21
Whether the topic is globalization or healthcare disparities,
Moe-Lobeda's emphasis upon seeing, hearing and responding
to the stories and peoples most threatened by present structures is
crucial. Calls to solidarity ring hollow if they are not
accompanied by profound efforts to listen, perceive, understand and
respond. Listening on the part of the relatively privileged ought
to involve a cost to the hearers-and a fundamental change in their
dispositions and practices.
[48] Moreover, solidarity necessarily involves recognition of
others in their particularity and uniqueness. Differences are
honored, not erased. No one is left unaccounted for or rendered
voiceless. No one is superfluous. Everyone's unique heart,
perspective, and abilities are needed. This is how I envision the
reign of the divine. In contrast to an autonomous and individualist
notion of the self, Roman Catholic and Womanist theologian, M.
Shawn Copeland, understands personhood only within the context of
complex and diverse peoples living and working together. Indeed,
such efforts at solidarity offer a glimpse of the dominion of God
in which everyone in bright and varied array is present and
participating. Copeland casts solidarity in an explicitly
theological light by contending that attempts at solidarity are a
way to worship God.22
[49] Copeland's conceptualization of the relationship between
personhood and solidarity calls those of us in positions of
privilege to radical accountability: "If personhood is now
understood to flow from formative living in community rather than
individualism, from the embrace of difference and interdependence
rather than their exclusion, then we can realize our personhood
only in solidarity with the exploited, despised, poor
'other.'"23 The significance of
solidarity is found not only in the possibility of social
transformation or in an embodied respect for exterior differences,
but also in its potential for inner transformation as well. Not
only is the care of vulnerable communities at stake, but so is the
moral formation of those less vulnerable-the affluent, the lighter
skinned, the healthy, the well-insured. If we do not push ourselves
and our communities to live and act in ways that are in solidarity
with those socio-economically, politically and physically at risk,
we stand to lose our own humanity.24 By putting ourselves
above such struggles or denying that we are inherently implicated,
the formation of white and privileged beings continues to be
woefully misshapen. The consequences are both devastating to others
and shame-producing for us.
[50] Indeed, we can be downright ugly and mean-spirited. Two of
the care providers I interviewed, Beef Stew and Lucy Bristol, spoke
of a personality characteristic that they would like to see
disappear, which seems prevalent among both their white patients
and colleagues. Lucy explained how she has noticed that white
and/or affluent patients can be less appreciative of and feel more
entitled to healthcare. She observed that they are less likely to
say "please" and "thank you" whereas less fortunate patients "are
so grateful for any little thing you do for them." She found that
in the city hospital where she once worked, the patients (the vast
majority of whom were impoverished and persons of color) were more
respectful of the nurses than some of her white and affluent
patients at the well-respected private hospital where is currently
employed.
[51] More than Lucy, Beef Stew was sharp in her description of
this trait:
It's amazing how people
believe that they have this white card, and they can do anything
that they want . . . And I would really love . . . to find out how
that has happened, so that we can knock that down. Because once
someone gets taken down a peg, not to humiliate, but to understand
that, look, you are not privileged because your skin is white,
you're a blonde, . . . . You're a human-take that off . . . you
bleed the same way I do.25
I have started to refer to this pernicious disposition noted by
Lucy and Beef Stew as a "white entitlement syndrome." Beef Stew
makes a very important distinction: Calling white and other
privileged people into accountability for our presumption is not
done to humiliate us, but rather to stop allowing white persons and
communities to be the center-the standard and the norm. "Taking us
down a peg" is done so that we might be who we most truly are:
human beings intrinsically inter-related and accountable to other
varied, but equally beloved human beings.
[52] Ultimately, combating white entitlement, privilege,
discrimination and bias involves not only education, but
conversion. People of privilege, perhaps especially the ones who
espouse and cling to "good intentions," need vehicles for honest
self-reflection. For example, I commented to Wanda that most likely
healthcare providers do not want to/intend to look down on anyone.
Yet when there are differences between providers and patients-race,
socioeconomic class, HIV status, culture, religion, language-it is
complicated to meet the other as a person. I then asked her how
care providers might learn to more fully understand and respect
people within such particularity. She responded:
I think it takes a lot of
soul searching within the individual self, you know, because I know
people, they know that they're doing something wrong because I'm
pretty sure they're getting complaints, you know, the way they may
have treated a patient or something like that. They get complaints
on that so they know . . . But I think you have to be willing to
accept that you did that, and be willing to make that change. But a
lot of people are not willing to do that because they think, "Oh,
it's not me, I'm not like that."26
Both hearts and minds of the privileged must turn in new
directions in order to see and appreciate the humanity of others.
This dissertation has tried to articulate methodological steps that
may facilitate the soul-searching and intellectual analysis needed.
A combination of different and sharp tools are needed to cut
through the tough, encrusted layers of denial that keep peoples'
eyes, intellects and souls from seeing how our assumptions and
sites of privilege wound the well-being of others.
The Possibility and Necessity of Making Normative
Claims
[53] All human beings will always have to re-evaluate the world
we are creating or want to create. We must always be on the lookout
for who is not among us, who has not spoken and who has been left
out or put aside. Revision does not equal relativism in ethics.
However, it does mean that all our expressions of justice, faith,
right relationship, grace and love are approximations-finite and
imperfect and ever in need of critical re-evaluation.
[54] When we think we arrive at the last word or the final and
complete sense of a value, virtue, principle or theological
concept, we have fallen into idolatry. This statement does not mean
there can be no norms. For me, to love one another as our self and
to love God with everything we've got transcends time, space and
context. Yet its meaning must always be worked out in the
particular and in concrete relationships. What loving the neighbor
means in one context may not look or translate exactly the same in
another. Appreciation of this reality helps to keep the norms
vibrant within embodied relationships and structures, rather than
eroding into "pretty" but abstracted concepts that fail to manifest
in lived reality.
[55] We cannot deny the impartiality of all knowledge or the
particularity of social locations. Ironically, recognizing
particularity may actually open the door to a kind of universality.
In Carter Heyward's words, "Knowing our particular social locations
and our limits . . . . is intellectually empowering as a lens
through which we may catch a glimpse of what is,
paradoxically,universally true-that all people are limited by the
particularities of their life experience."27 The reality that all
people are particular and limited in our knowledge and perspectives
is something shared by all humanity. This fact shows again how
deeply we need one another's stories, experiences and wisdom in
order to arrive at adequate social norms. The descriptions,
philosophies, theologies and perspectives of an individual or a
relative few will not suffice. Human beings are forever and
inescapably interdependent creatures.
[56] Having said this, it is also imperative to recognize that
some forms of relationality and interdependence are more desirable
than others. Some structures and practices actively promote
justice, health and right-relation. Others capriciously prey upon
the needs of some while simultaneously profiting from the resources
they possess. Undeniably, suffering, abuse and exploitation occur
across cultures, societies, and nations. In the case of this
research, U.S. healthcare quality disparities are a problem for
which lighter skinned and affluent communities (found at all levels
of government, healthcare institutions, insurance companies and
lobbyists) are most pointedly accountable.
[57] While the process of arriving at normative conclusions is
arduous and fraught with thorny complexity, theological and social
ethicists nonetheless have a responsibility to offer persuasive and
compelling visions that carry normative weight and that hold
privileged communities accountable. What is needed now, both in
academic circles and also in the larger society, are thorough
descriptions of present social realities along with constructive
proposals for what ought to be and for how people ought to be
regarded. Roman Catholic white feminist ethicist Margaret Farley
understands that:
An obligation to respect
persons requires . . . that we attend to the concrete realities of
our own and others' lives . . . . We can risk considering seriously
the meaning the other gives to the world; building communities of
support that have openness to the other at the center of their
strength; surrendering our tendencies to omniscience without
surrendering to despair; learning the particular content of just
and fitting care.28
Respect for persons and difference does not negate the
possibility of making normative claims. Human beings-as moral
agents facing daunting and myriad injustices-dare not give up on
creating pragmatic strategies and conceptual frameworks which
foster right relationship among human communities living in a
fragile and precious creation. Ventures into theological and social
ethics are not sufficient if they stop at the place of description
and deconstruction of present realities. We must also take the risk
of offering constructive, bold and hope-filled vision.
[58] As Copeland asks questions about differences, commonalities
and solidarity, she articulates concrete measures by which to
assess if the full humanity of persons is being respected or not.
For insight into these questions, she turns to an understanding of
the demands and obligations, which human beings (specifically
Christians) must bear as fitting responses to the incarnation of
the divine. In doing so, she offers the following description of
human identity that is inextricably woven together with human
responsibility:
Our search for the humanum
is oriented by the radical demands of the incarnation of God; . . .
[T]o be a human person is to be (1) a creature made by God; (2) a
person-in-community, living in flexible, resilient, just
relationships with others; (3) An incarnate spirit, i.e., embodied
in race, sex, and sexuality; (4) capable of working out essential
freedom through personal responsibility in time and space; (5) a
social being; (6) unafraid of difference and interdependence; and
(7) willing daily to struggle against "bad faith" and resentment
for the survival, creation, and future of all life . . . Taken
together, the various theologies for human liberation push us, in
self-giving love, to forward this realization in "the forgotten
subject"-exploited, despised poor women of color. Only, in and
throughsolidarity with them, the least of this world, shall
humanity come to fruition.29
In this description, Copeland makes the connections between
theology, anthropology, social analysis and ethics explicit. The
full meaning and implications of these points may only be spelled
out in particular communities of dialogue and action. What is clear
is who is the normative anthropological subject. The test, then,
will be if social, theological and medical ethics can remember this
"forgotten subject" and if, in doing so, transformative practices,
institutions and communities are creatively fashioned by imperfect
yet beloved human beings working together for the sake of those
most in need of love and care.
[59] Sophia's words show the kind of contribution theological
language can make in shifting the terms and frameworks for
healthcare discussions. She spoke eloquently about what God wants
from and for human beings. I asked her how she thinks God wants
human beings to treat each other. She answered:
What does God want human
beings to do for each other? That's an easy one, although it's hard
to practice sometimes. Everybody is supposed to be more Christ-like
. . . That means that we're supposed to . . . . treat each other
kind. We are each other's keeper. And everything that I feel I
deserve, you deserve. I mean, that's what God wants us to do. We're
supposed to treat each other with humility. We're supposed to treat
each other with kindness, with sympathy, with affection. This is
what we're supposed to do . . . And we're here to take care of each
other. And if somebody-if we don't take care of each other, we're
not taking care of ourselves. There's no way around it. We're all
one people. There's no way around it. Anything that you do to me
that isn't right, you're saying that it's okay-you're saying it's
okay for it to be done to you. Right? I mean, okay, we have all
this medical profession, and it's all well and done. The world in
itself was made perfect, and there's a natural remedy for
everything anyway. So we made up all of these other things around
it, and we're wrapped up around it. But let's just keep it real.
And that's what God wants us to do. And all of our creation, and
all of our manmade things, we still, at the end, as human beings,
have to keep it real.
[60] I asked, "And how do we keep it real?" Sophia
answered:
By not getting caught up in
all of that, and remembering at the end what it is that matters,
and that is life. That is human life. And how it is that we're
treated, and how fragile it is, and how much we can just lose it.
At a blink of an eye we can be gone. And it all revolves around
love. And love is, you know, a big thing when you think of
everything that's thrown in there. It's hard to have unconditional
love for strangers. You know? In a perfect world, that's exactly
what it should be, though. Because we are-we're all blue blood
until it comes out of our body. I mean, it's just-but that's in a
perfect world. I mean, that's like, in this world right now, that's
a fantasy. But that would be ideal, right? And I think that's what
God would want. And He gave us the power of choice . . .
While she clearly sees the harshness of this world, Sophia also
stays grounded in what is most real and in what most matters. She
has not allowed the language and structures of meaning within
corporate healthcare define ultimate meaning for her. Even if it
means swimming upstream against strong financial, cultural and
ideological currents, human beings have a choice. Sophia reminds us
that God has given us all a crucial choice regarding how we will
live, what we will value and how we will treat others. No singular
entity-whether philosophical, scientific, bureaucratic, or
biomedical-has the right to dominate the terms and frameworks for
discussion of such critical matters.
[61] The breadth and depth of healthcare quality disparities for
darker skinned peoples and members of lower socio-economic classes
communicate something important about how we as a society value
human life. These disparities affect people when they are not only
generally vulnerable within the structures of society, but when
they are acutely vulnerable-when they are seriously ill. Those of
us who are Christians profess faith in a God who knows and loves
each strand of hair on each human head. We are called to love God
and to love one another as ourselves. Thus, such disparities in
care represent both a moral and theological crisis. Simply put, we
are not seeing or loving our neighbors as fully as we ought.
[62] A distinctive and important kind of learning can happen
when human beings faithfully and descriptively hear and re-tell
stories-whether they are scriptural, their own, or from another's
life experience. Such listening can facilitate a kind of
transformation within both the intellect and the heart of the
hearer. In short, what I have attempted to do is to help close what
can be a cavernous gap between abstracted numerical realities and
the concrete lives of people with respect to healthcare quality
disparities.
[63] To do so, I have listened to just a few stories from a very
few people, from Latina and Black women with breast cancer and from
healthcare providers. My prayer is that my re-telling of their
stories and perspective has been faithful and that it has neither
idealized nor demonized any of them. The critical thing is that
they are neither heroic exemplars nor utter failures, but human.
The beauty is that they are unique and ordinary members of the
human species. I hope that substantive reflection on these few
individuals might help those who read this text to not lose
particular peoples in the generalities and statistics of our
times.
[64] Indeed, I have seen professionals pass over statistics
without being moved by them. One of my questions has been, "How do
you get through to people?" It is relatively easy to post a set of
principles on the wall which lists every patient's bill of rights
to respect and to being treated with dignity. It is not as easy to
embody them consistently-on both interpersonal and structural
levels. While policies and laws can regulate much (never all)
external behavior, they cannot legislate the kinds of interactions,
relationships, attitudes and efforts that will make such respect
and concern for dignity most deeply embodied and concrete. A
genuine commitment to seeing people in a new light is a fundamental
part of creating justice and social transformation.
[65] While I have learned much from these collaborators, I
cannot offer any perfect solutions for safeguarding human dignity
across time and location. It is wise to recognize, as Ivone Gebara
does, "We have no consistent record of humanity's progressing in
virtues and moral values. Instead we have the impression that at
each moment of our history, we have to learn all over again the
meaning of giving and receiving respect."30 My goal is not
to create a universal ethical framework, but rather to add one
additional way for individual and communal moral formation and
discernment to happen that helps us to keep re-evaluating our
tentative embodiments of larger ethical norms. Again, in Gebara's
poetic words:
To love the other as oneself
has to be understood in concrete situations in which each
individual, whether among community, friends, family, or work
associates, is ethically obliged to place himself or herself within
the skin of the other. A mutuality takes hold and transcends any
principle or judgment deriving from already established dogmatic
laws. We have to construct among different groups provisional
agreements, always capable of revision, in order to allow the
common good to be effective, not just a beautiful expression stated
in a document, like the Universal Declaration of Human Rights, that
lacks any force.31
Time and time again, human beings-moral agents-have to translate
and implement what it means to love truly and deeply our neighbor
as ourselves. This is our common gift and task. While humbling, it
seems most honest to stay grounded in the dust, joy and particular
dynamics of the times and places in which we find ourselves.
[66] To discover anew what respect and love mean in the concrete is
not simply an intellectual assent; rather, a conversion to love is
required. Through meaningful encounters with those who most
directly confront healthcare disparities and inequalities, perhaps
we-social, theological and bio-medical ethicists along with those
who work in healthcare-might not only learn about the disparities,
but might also turn anew to our neighbor and glimpse the sacred.
Equally important, perhaps this kind of learning will contribute
not only to the amelioration of human suffering, but also to our
own moral and vocational re-formation. Perhaps we will discover
more concretely what it means for us to be responsible, accountable
and present to another.
[67] Latina and Black women with breast cancer have much to
teach the larger society about healthcare quality. This knowledge
embedded within their particular experiences may contribute a vital
measurement for assessing the adequacy of healthcare policies and
practices. Knowing one counts among the living can mean the
difference between life and death, between healing and alienation,
between redemption and despair. My deep hope is that attentive
listening to those most vulnerable might make U.S. healthcare more
humane for all persons.
© November
2005
Journal of Lutheran Ethics (JLE)
Volume 5, Issue 11
1 Since I began this research, it has been pointed
out to me a few times (interestingly always by white academics or
professionals) that white working class, the white poor, and whites
living in rural areas also suffer a lack of healthcare due to
socio-economic assumptions and barriers. Undeniably, these lighter
skinned populations are at risk and merit attention. However, the
fact that they too are vulnerable ought not be used to deny or
obscure the particular vulnerabilities of darker skinned
communities.
2 There is a fast-growing body of texts and curricula
on this topic. Here are just two examples: Larry D. Purnell and
Betty J. Paulanka, Transcultural Health Care: A Culturally
Competent Approach, 2nd Ed. (Philadelphia: F.A. Davis Co.,
2003); Bette Bonder, Laura Martin, and Andy Miracle, Culture in
Clinical Care (New Jersey: Slack Inc., 2002).
3 In a future project, I would like to analyze
various cultural competency models utilized by medical and nursing
schools in order to discern what may be the most rigorous and
transformative models.
4 Mary-Jo DelVecchio Good, Byron J.Good, et al., "The
Culture of Medicine and Racial, Ethnic, and Class Disparities in
Healthcare," in Brian D. Smedley, Adrienne Y. Stith, and Alan R.
Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic
Disparities in Healthcare, Institute of Medicine (Washington:
National Academy Press, 2002), 620.
5 Wanda emphasized that hospital leadership needs to
a lead in making the changes part of the institutional culture:
(W)hen I worked in a hospital, we used to speak with
the interns. And the first thing the social workers would do was,
you know, give them a speech. And then, you know, they would leave
and go to their-through their own same old stuff. But then they had
doctors who were over them, teaching them, who didn't have bedside
manners. So, I mean, you would need to get to the root of it, you
know, the top doctors who are doing the teaching.
6 Beef Stew later commented:
When you put money, and when you put power behind that
change? . . . When you make the price high enough that when you
don't do it, you're going to feel it, guess what, change is going
to come. And that change will happen when you get a black head
nurse, when you get a Hispanic CEO, when you an Asian board of
trustees . . . . Okay, when you start reflecting diversity that
way, on a high level, then guess what, that's when the change is
going to come. Until then, you can put all the black staff nurses
and all the Asian doctors and Hispanic whatever, anywhere you
want.
7 Associated Press, "Report Urges Diversity
in Health Jobs," 5 February 2004. They cite from newly published
Institute of Medicine Report, In the Nation's
Compelling Interest: Ensuring Diversity in the Health Care
Workforce, available online.
8 Brian D. Smedley, Adrienne Y. Stith, and Alan R.
Nelson, eds. Unequal Treatment: Confronting Racial and Ethnic
Disparities in Healthcare, 114.
9 Robert Pear, "Taking the Spin Out of Report that
Made Bad into Good Health," New York Times, 22 February
2004, online: www.nytimes.com.
10 Recall the article: H. Jack Geiger, "
Why is HHS Obscuring a Health Care Gap?" Washington
Post, 27 January 2004, A17.
11 Good and Good, et al., "The Culture of Medicine
and Racial, Ethnic, and Class Disparities in Healthcare," 599.
12 Beef Stew confided:
I will say-and maybe this is
a bias-but I will say that, when I see a person of color, and it
doesn't have to be a African American, can be Hispanic, Asian, you
know, Middle Eastern person, anyone, a person of color who is
especially disadvantaged, like may have Medicaid, no insurance,
worker's comp, no fault, I tell you, I do go out of my way and work
a little harder in regards to making sure that they understand the
process. Because usually people that may be disadvantaged or
indigent, poverty-stricken, maybe not educated and affluent, they
don't know the process. And sometimes they're lost in it. Versus
people who have really good insurance, you know, and who are rich
and everything, and are affluent, well, they know the
system.
13 A recent investigative reporting article by
Katherine Boo recounts the story of Juana, an uninsured woman in
Texas who died at the age of 36 of cervical cancer, two years
following her diagnosis. Because she had no insurance, she was shut
out of all of the for-profit hospitals near her in Cameron County,
Texas. From the article, I believe Juana was not an undocumented
inhabitant. Boo reports:
While federal law requires those hospitals to treat the
uninsured in emergencies-gun shot wounds, heart attacks-the
institutions usually decline to accept uninsured supplicants who
need chemotherapy, radiation, or other longer-term treatments.
Juana, like most uninsured patients with advanced cancer in Cameron
County, had to travel back and forth to the state public hospital
in Galveston. It is an eleven-hour bus trip each way. (Katherine
Boo, "Letter from South Texas: The Churn," The New Yorker
29 March 2004, 72.)
Texas has the highest rate of uninsured of any state in the
union.
14 Emilie Townes explores models of care that
developed within and are particularly attuned to African American
communities. Her analysis offers important alternatives to western
cultural productions of health and also includes several
constructive examples of African American community programs and
education strategies. See townes, Breaking the Fine Rain of
Death, 147-167.
15 It is important to note that as of this writing,
Hannah Jacobs lost her job after over twenty years of service due
to corporate down-sizing. While I do not know the specifics of her
prior company's situation or firing, it is reasonable to entertain
the possibility that the high costs of health insurance for
full-time employees figured in, at least in part, to the company's
decision to cut back on staff numbers. If this were the case, it
highlights the fact that in present healthcare and business
climates, even those who are presently insured are not exempt from
the threat of losing such coverage at any time.
16 Leonard's internal conflict on the matter of
universal health coverage was apparent:
(I)f everyone is flatly
salaried, then regardless of what you do, either in quantity or
quality, then the forces are in place to do as little as possible .
. . However, having said that, I think that we really all should be
salaried, that there should be some kind of universal
infrastructure, so that as physicians we are adequately
compensated, and then have a little bit less or fewer
administrative hassles. So, I do think that we need some type of
national, you know if not, you know, national health insurance,
some type of national healthcare system where we are adequately and
appropriately compensated. . .
17 James P. Spradley, The Ethnographic
Interview (New York: Holt, Rinehart and Winston, 1979), 3.
18 Ibid., 4.
19 Ibid., 18-22.
20 Ibid., 24.
21 Cynthia Moe-Lobeda, Healing a Broken World:
Globalization and God (Minneapolis: Fortress), 121.
22 She writes: "In this solidarity, the Creator is
worshipped, the humanum honored, particularity engaged,
difference appreciated. Solidarity affirms the interconnectedness
of human be-ing in common creatureliness . . . Humanity is one
intelligible reality-multiple, diverse, varied and concrete, yet
one." M. Shawn Copeland, "The New Anthropological Subject at the
Heart of the Mystical Body of Christ," CTSA Proceedings 53
(1998): 42.
23 Ibid., 31-32.
24 See Jennifer Harvey, Karin Case, Robin Hawley
Gorsline, eds.; Disrupting White Supremacy from Within: White
People on What WE Need to Do (OH: Pilgrim, 2004).
25 On this point, Beef Stew encouraged me to see the
film, A Day in Black and White, which treats the
differences in perception between Black and white people.
26 Wanda continued:
And I think that's what
helps me, that I can look at myself and say I don't want to be like
that; or if I did something, I can just, you know, pray about it,
and ask God to forgive me for that, and change, you know, work
towards the changing, you know, because I am not perfect. And I
pray every day that when I walk out of my house, that I could, you
know, I would treat people with respect, that I will not look down
upon people, you know, wherever-wherever I'm working and wherever
I'm going . . . Or, if I did something to someone, you know, that
may have offended them, I can go to them and just, you know
apologize or something like that.
27 Carter Heyward, Touching Our Strength: The
Erotic as Power and the Love of God (San Francisco: Harper
& Row, 1989), 9-10.
28 Margaret Farley, "A Feminist Version of Respect
for Persons," in Feminist Ethics and the Catholic Moral
Tradition, Readings in Moral Theology, edited by Charles
Curran and Margaret Farley (New York: Paulist Press, 1996),
179.
29 Copeland, "The New Anthropological Subject at the
Heart of the Mystical Body of Christ," 34-35.
30 Ivone Gebara, Out of the Depths: Women's
Experience of Evil and Salvation (Minneapolis, Fortress Press,
2002), 96.
31 Ibid., 142.