This is part one in a two-part series on listening to women of color with breast cancer.1 Click here for part two of the series.
[1] I am a Christian social ethicist who contends that adequate moral inquiry necessarily involves interdisciplinary reflection and conversation. In my view, the proper place of a professional ethicist is not only in the library or computer, but is also found in dialogue with others who have key insights to share. And many times, these persons are not formal academics. Early on in graduate work, I realized that I wanted to explore healthcare disparities. Confronting the troubling statistics about the numbers of uninsured (now up to 45 million according to the U.S. Census) along with evidence of persistent racial-ethnic inequalities in health and healthcare preoccupied much of my scholarly attention.
[2] Yet, what I also came to realize was that consulting the current literatures related to these questions would not suffice as a method of moral analysis. In addition to that research, I sought to learn from people who have had substantive experience seeking healthcare themselves. Consequently, from June through December of 2003, I interviewed eight Black and/or Latina women who have had, or currently have, breast cancer.2 I met the women with cancer primarily through women’s cancer support group networks in New York City.3 During this time, I also interviewed six healthcare providers, five of whom work primarily with cancer patients.4
[3] This article will shares theological insights of these women with breast cancer who make visceral connections between what they know of God and what they know about what human beings owe one another. I will also describe the qualities of a patient-provider relationship that these women most prize. In a subsequent piece, Part Two, I will take these theological and practical insights seriously as I consider what has to be in place-structurally-for such wisdom to be heeded within U.S. healthcare.
God Has To Live in Each One of Us: Theo-ethical Insights of Women with Breast Cancer
[4] As part of the ethnographic research, I asked each of the women if and how her faith in God informs what dignity and respect mean; how human beings ought to treat one another; and how they try to treat others. Seven of the women identified explicitly as Christians.5
[5] Before articulating how faith in God informs their sense of what dignity and respect mean, I need to touch upon another term: gratitude. This gratitude to God was voiced so often that it seems fundamental to understanding anything else the women said regarding the relationship between God and humanity. Even as several of them were/are contending with cancer and uncertain futures, these women effusively thanked God and emphasized that they felt accompanied by God throughout their lives. They expressed ardent confidence in God and acknowledged that God is ultimately in control-that they live in dependence upon God and God’s goodness. Slimfat Girl expressed her faith this way: “It’s like this-He’s always been there. He has never left my side. I have been in some situations, and I always thank God, and I thank the Lord that they pulled me through. So I do believe. I do believe there’s a higher power than myself.6” And Marcela: “And I thank God that I feel, that I am feeling really, really well-thanks to God. I appreciate this God that is up above because I ask Him for this every day.7” She then added this description of the divine: “I think that He is support, where we find refuge, that if one looks, if we look for God day after day, He will unconditionally support us always.8”
[6] This theme of gratitude and thankfulness came up in the three breast cancer support groups that I attended as well. In each of these cases, I heard many and varied women in challenging life circumstances unreservedly thank God and “give God all the praise and glory”: Immigrant women; undocumented women; Black and Latina women born and raised in New York City; women with limited economic means; women who have lost all their hair; women who were feeling poorly (some who had just had chemotherapy); women with poor prognoses. Through their tears, whether shed out of happiness or out of fear and worry, still they thanked God.
[7] This gratitude was not a form of denial of their illness, nor did it seem at all superficial or cliché. I saw fear and strength-doubt and hope-in many pairs of eyes. I understand their words of gratitude to God to serve as both expressions of their active hope and faith as well as reassurance that there are reasons to have faith-as a way to combat the fear that gnaws away at hope. As a white, educated, physically-well woman who has been discouraged by surveying all that is wrong in this world, I am humbled by their ability to stay rooted in hope in the midst of concrete suffering and reasons for despair.
[8] Their praise did not mean that they never got angry with God or struggled with faith. Sophia openly acknowledged that having faith can be really difficult, that sometimes she felt like she was “faking it.” I am sure that these and other women with cancer struggle so much and can be so angry or sad that they go to the point of losing any scrap of hope or faith. Yet what struck me about the dozens of women I met or observed was that both their faith in God and their hope for their own lives had grit. These inter-connected hopes gave them staying-power to endure the suffering and the uncertainty-at least in the moments that I have known them.
[9] It can be hard to find words to describe the divine-human relationship. When I asked Slimfat Girl how God wants people to treat each other, she exclaimed, “He wants everything-oh, boy! That’s why Adam and Eve did not stay in the garden, okay? Because they didn’t listen to what He said. And if they hadda’ listened, if they had of listened, you know, maybe the-our world would be a better place (emphasis hers).” The question of how faith in and knowledge of God informs how people are to treat one another can be daunting. The complexities and brokenness of this world can make it hard to imagine what human beings can and ought to do.
[10] Despite the mammoth problems of this world, however, Marcela eloquently expressed her understanding of who God is and of what this means for human relationships:
God says that He is love, right? And so, God has to live in each one of us. If one says that they love, one can assume it is because he/she knows God. Therefore, God says we are going to love one another . . . . Love is so important that it is, how to tell you, something that one cannot even define. So, we are going to love one another, respect one another, support one another so that this way God is reflected in each one of us.9
[11] Her logic is compelling: God is love-something so important that it defies the boundaries of any definition. Human beings love. To the extent that we love, God lives in each one of us. In fact, we are only able to love because we know God who is love itself. This radical incarnational understanding of the divine means for Marcela that in our concrete activities and lives, human beings are able and supposed to image God-to reflect this love and to be a refuge and support to others. Wanda made a similar connection. “I want to always treat people the way that they’re supposed to be treated, with respect and dignity and the love of Christ and having them see that Christ-like example within me.10” Wanda wants others to see divine love alive within her.
[12] Reflecting on Marcela’s and Wanda’s words, I realized that their emphasis is the reverse of what I usually articulate as my aim; namely, to see Christ (or the divine) in the other. While both ways of putting it are important, their vision is an important corrective for me because it inspires creative moral agency, in addition to respectful listening to and recognition of others. In an emphasis on seeing the divine in others, it is possible to forget or de-emphasize the crucial insight that by my own actions and decisions, I can reflect and embody (if only very partially) God’s love for the others I encounter in any given day. What matters is not only seeing the divine in others, but expressing divine love and justice in relation to others.
[13] When I asked a couple of the women to define dignity, I again heard an emphasis on self agency. Marcela told me, “Dignity is something that lifts your self esteem . . . What you think of yourself is what helps you have dignity.” I clarified, “So dignity is not something that others give a person, it is what one has inside oneself?” Marcela readily agreed. Indeed, while she agreed that others in society do not have the right to make a person feel bad, she was quick to add, “But it is not them who will resolve this problem for me, it is me.” I commented that if one has dignity in oneself it will be a kind of protection-to protect one against these influences-that others cannot rob this dignity because it is one’s own internal property. Marcela concurred: “[Dignity] doesn’t depend on them; it depends on you. But above, all, you have to maintain it always no matter what happens, you have to go on (her emphasis).11”
[14] I was surprised by her words. They place a great deal of weight on an individual to guard and maintain one’s own dignity.12 I felt she was letting social and structural inequalities off the hook too easily. As I continued to ponder her thoughts, I recalled Luz’s perspective. Even as Luz recalled her mother’s words, that she was born with “three strikes against her”-namely, being born Black, Dominican, and a woman-she, too, placed great emphasis on individual agency-speaking of how important it is to “be feisty”-to learn English, to get an education, to be assertive and to prove them wrong. Marcela and Luz’s point was that people who experience discrimination and prejudice must not internalize either. For persons and communities who regularly face racism, one way to contend with it is to deny and resist its power to determine their future or sense of self. “Dignity is yours to protect. It is not dependent upon others.” In these words, I heard a strong refusal to see themselves or be seen by others as victims-as persons utterly dependent upon systems and forces outside of their control. While I maintain it is essential to hold systems and individuals accountable for the ways in which they eat away at the dignity of certain identities and communities, their insight chastened any inclination on my part to deny their agency out of misplaced pity or sympathy.
[15] I learned something else about dignity. Its flip side is respect for others. What makes dignity genuine and what keeps it from devolving into narcissism or egocentrism is holding self respect in dynamic tension with love and concern for others-being attentive to others as persons who also have dignity. From these women with breast cancer, I heard in a powerful way that part of respecting others and one’s self involves humility. María commented that an inner balance is needed among humility, respect and consideration for others. “None weighs more than another, the three all weigh (count) the same.” Her words caused me to reflect that if one has authentic self-respect, she will be more humble with regard to others. Humility does not mean an absence of self-respect, but rather, having a grounded sense of one’s importance-not having to inflate one’s ego because one knows she is truly loved and worthy of love. Therefore, she can be less egocentric and instead turned more outward to face and address the needs and personhoods of others. Here I sensed a resonance with that pre-modern man Luther.
[16] María gave an example of how gratitude to God and humility within herself help her to notice and respond to the needs of others. She said that when she sees hungry people on the street and she has two or three dollars, she often goes and buys the person something to eat. She does this, she says, not so that God will appreciate her, but because she is grateful to God. “I am very grateful to God, first of all, and then to my family and to [the second hospital.]” She added that she is also grateful to the cancer support organizations and to their volunteers and staff.13 And because she is so grateful for all the information and support she has received and for her life, she wants to give back. “God’s given me a second chance and if someone is in the shoes I was in, I will try to help.” In terms of giving back to the organizations that have helped her, she tries to be present for the events, walk-a-thons and the marches on Washington-“as long as God permits.” Both her cancer support volunteering and her feeding of hungry people are expressions of her self-respect and her humility.
[17] In a similar vein, Sophia explained that cancer has made her acutely aware of human fragility-that life can be gone in the blink of an eye. She vividly sees what really matters in life. She said that cancer has changed things in a positive way in this sense because it helped her get her priorities in order and to see what is truly important. She reflected, “Cancer made me stronger in a lot of ways. It made me more vulnerable in a lot of ways. I’m more open than I was before . . . Now I kind of want to do more, help more. Not just with cancer, but with anything, anything I can do . . . I listen more to people, too. It’s less about me, you know?”
[18] Self respect and respect for others go hand in hand. Wanda brought this fact into full light for me. I asked her to define dignity. After a long pause, she said:
I think just treating others the way that you would want to be treated, just with respect, not looking down on people, not-because a person, for example, may have, like, HIV, and, you know, not treating them with disrespect, but treating them like a human being, like they’re somebody. And I use that example because that was a population that I worked with. And I used to see how people would treat them and just wouldn’t want to be bothered or touch them or anything like that. And, you know, once I became educated about the illness, you know, it didn’t frighten me. You know, I was, like, they’re a human being too, you know. . . (T)hey have a disease; but they’re a human being, you know, they need to be treated with respect and not looked down upon or thrown away.
[19] What struck me about this comment is that when I asked Wanda to define dignity, she did so not only in abstract terms, but reflected on a change she had experienced in herself as she worked with a stigmatized population. Said differently, she did not speak about how others ought to respect her dignity, but rather focused on how in one instance she herself had become more attuned to the dignity of others. This insight conveyed a great deal of self-reflexivity.
[20] Moreover, Wanda explained how confronting her own biases and assumptions has not only helped her to respect others more, but to also have a grounded sense of dignity and self respect in herself. Specifically, she said that working with people with HIV has helped her to speak up for herself: “And I just think having the job of working with the HIV population has really helped me, you know? Not only did it help me empower my clients, but it helped empower myself, and to speak up for myself.” Working with a community of people who are vulnerable in their own way gave her a window into her own life. In getting to know people with HIV and seeing what they go through, Wanda learned how to look out for herself and how to be more genuinely compassionate to others.
[21] In all, in articulating what dignity in oneself and respect for others mean, these women also saw how far human beings are from what God wants for us. Yet this knowledge did not stop them from offering a vision of what ought to be. Several emphasized that it is important to strive for what is possible in one’s life. To recall again Marcela’s insight, God has to live in each of us. When we love, it is because God is in us. And because God’s love and grace make it possible for God to dwell within humanity, we had better get busy. Because we are loved so intimately and profoundly-because God has searched and dwells within all human hearts, knew each of us in our mother’s wombs and cherishes every one beyond description-we too can and must do all that we can to cherish one another.
I Didn’t See [a] ‘Doctor.’ I Just Saw a Woman: Patient Expectations of Healthcare Providers
[22] That’s how Hannah sees her breast surgeon-as a woman first. And that is how Hannah feels seen by her as well. This quality of relationship seems so fundamental. Yet it is not so easy to achieve in actual patient-physician relations. In what follows, I want to explore what I have learned from these women with breast cancer about what ingredients form the basis for high quality patient-provider relationships. I will touch upon four.
[26] Above all other remarks, when asked what they most want from their doctors and/or other primary care providers, all of the women repeatedly emphasized authentic listening, empathy and understanding. I cite Sandra to illustrate the point. She explained that the most important thing care providers and systems need to do in terms of showing respect and honoring the person is hearing-genuinely hearing-without being compromised by an impatience to move on. “Listening is the biggest thing. I don’t know if it’s an acquired skill, but it certainly diminishes and affects the dignity and respect of the person when they don’t listen.” The basic yet crucial act of listening may be the most direct way of respecting another person. Sandra went on to comment, “Those who did not hear forced me to seek more information so that I could feel comfortable.” Indeed, when doctors or nurses rush the listening, they may end up having to spend more time with the patient and being less efficient in the long run. Being in a hurry, or overly relying on impersonal protocols for processing people, especially in the initial stages of a professional relationship, can inhibit trust and delay relationship-building.
[27] Antonia Morales, a 3rd year medical student, also understood that listening well makes the work easier for the provider:
[28]And I see amazing doctors. And I see some that are not . . . (T)hose that are amazing are the ones that drive me. Because they are so much better physicians in what they do. And it is obvious. If you want to do a better job . . . . communicate better with your patients. They’re going to tell you what’s going on if they feel they can trust you. If not, you know, I think it’s going to be harder for you. Your patients are going to come back . . . or they’re going to have problems, and you’re always going to see them sick . . . I’m following an amazing doctor now. And even though she runs around, and she has a lot of work, when she comes into a room, the patient, I mean, shines. Because all she needs to do is come next to their bed, you know, come down to their level, and hold their hand, and talk to them face to face, smile at them, let them know everything’s going to be okay, let them know what’s going on. It doesn’t take that much time . . . Come down, sit down next to them by the bed, you know, apologize for anything that’s going on, you know, because things happen, nurses you know, or whatever. Apologize. Doesn’t hurt, you know, and it makes them feel like you care about what’s going on with them while they’re [in the hospital]. Apologize for it. “I’m sorry.” And “We’ll try our best to do better.”
29] Antonia points out that adequate listening is not only a function of the ears and brain, but of one’s quality of presence. Sitting down next to a patient can indicate that a doctor is truly present to the condition of the person in the bed. Even more, Antonia signals the importance of empathy-even to the point of apologizing. The act of offering an apology-communicating that one is sorry that another is uncomfortable or that things have not gone smoothly-seems something so obvious and yet may be the last thing a care provider thinks to say to a patient.
[30] Finally, genuine listening involves not being put off by questions. Sandra noted the importance of this quality by pointing out its absence in her relationships with her first two physicians. Interestingly, she noted that in her case, being educated did not make a difference in terms of being listened to or treated with respect. In fact, she felt her education had worked against her. She felt treated as a “dumb nurse” by the first physician because she did not already know all the medical information, asked a lot of questions and had let her insurance lapse. The second doctor, while less abrasive, also seemed threatened by her educated questions.
[31] A second quality of healthcare providers that I heard the women desire is honesty. Slimfat Girl implored: “And just be honest with me. Be honest, just be honest. You know?” (emphasis hers). Honesty was also of paramount importance to Luz who poignantly articulated this need by explaining that part of the problem with her first doctor was that he was not honest with respect to what he did not know. He assured her that she was fine (or would be fine) before having test results to support this claim. Luz adamantly stated:
A doctor tells you the truth of your illness. A doctor is professional enough to tell you, “This is what I understand from my studies, from the books-not from my feelings. . .” And not a doctor that would tell you, “Oh, you’re ok, that’s nothing.” A doctor should never tell a patient “That’s nothing,” or “This looks like”-no. A doctor should say, “Let’s take whatever it is, send it to a lab, let’s see what it is.”
[33] Rather than saying, “I don’t know what you have,” or “We have to wait and do all the tests before we will know,” this doctor tried to reassure Luz. Attempts at reassurance that are not based in facts quickly diminish in their value to a patient. Even if the words sound good at first, their hopefulness is eventually unmasked for what they are: empty attempts to keep the patient from being upset (at least in the provider’s presence). In this way, Luz explained that such attempts to be caring actually do the opposite:
[E]ven though he spoke the same language, he was not like caring because he didn’t understand my feelings. For example, you know that what you are telling me is from you, it’s not from medicine. It’s not like you have tested this and know that this is a fact. You just see a worried person and you are going to tell me something to make me feel better, not something that is medically correct. When I sat down with the doctor [at the second care setting], he told me, “Your cancer is aggressive. It’s a bad cancer.” He told me. He told me the truth about my cancer. He did not tell me something I wanted to hear . . . Coat it with honey, coat it with sugar, do something, but tell me the truth, not something that I want to hear. So I have to do what I have to do to take care of my body . . . [S]o I can make my decisions. (emphasis hers).
[35] According to Luz, the most caring thing to do is to give the patient the most accurate information possible. To reassure someone without knowing all the facts undermines respect for the person as well as one’s agency. Luz needed to know the truth so that she could make the best decisions of what to do next to take care of herself. “Coat it with honey . . . but tell me the truth.”
[36] While María agrees that honesty is important, she would emphasize the need for honey. Genuine compassion is the third ingredient. Just as compassion without information has serious deficiencies, so does being candid without having tact. María felt her doctors were incredibly brusque with her-“frío.” Providers need to be honest and they need to convey information in a caring and compassionate manner. It is a delicate, but crucial balance.
[37] Compassion and honesty need to be joined in a provider’s relating to patients. Most nursing and medical school textbooks would emphasize this point. The harder question is how to achieve such a balance. I asked Wanda how she knows when compassion is genuine-and providers are not simply going through the textbook motions. She responded:
I look at body language, the way they’re talking, how they’re expressing themselves. Body language is really important to me. If someone is-if I’m asking a question, and they’re like, you know, shrugging their shoulders, and as if they don’t care or it’s not important, or, you know, trying to brush me off, then I look at that. I also look at just the way they speak, their voice, how they talk to me, and not talking down to me.
[39] Patients are able to read their providers as thoroughly as their providers read their charts and test results. Feigning interest or concern rarely works. Wanda also commented that her primary cancer physician (a white woman) “really loved her job. She loved working with people.” Her love both for her work and people showed through in her words and actions. In dramatic contrast to two of Sandra’s doctors, Wanda’s physician enthusiastically (and without defensiveness) encouraged her to get a second opinion and gave her all her records to take with her. They have had an ongoing relationship since Wanda’s diagnosis; they have come to know and trust one another. This relationship has been built on consistently good (honest) communication and positive rapport (genuine compassion and sensitivity).
[40] Wanda underscored the weight of such qualities on patient-provider relationships. They are not mere courtesies; they can affect the patient on a profound level:
I think that that can help soothe a person or help the healing process, if you have a very compassionate doctor working with you, or staff working with you . . . Because if a patient has to come back, and they’d be worried about how you’re treating them, their immune system is already weakened, so that’s stress on them. I mean, that’s just going to bring them down even more.
[42] While a brusque exchange with a person in authority can irritate a healthy person or cause her stress, it may not as easily threaten her well-being. Wanda introduces an important possibility that might be overlooked. An absence of honesty, compassion or listening may very well beat down an already compromised immune system. The critically ill are in a weakened position-physically, emotionally-with respect to their caregivers. They have more to lose than their care providers.
[43] Finally, I heard the women emphasize their need for their providers to be skilled clinicians. They want thorough work-ups and tests. This point, while obvious, ought not be taken for granted. María’s story represents one example of what can happen when the work-up is not done, but deferred over the course of several months and visits. In delaying the biopsy, her tumor grew significantly and was joined by a second.
[44] Luz and Marcela also emphasized the importance of having comprehensive and prompt testing. Marcela grew impatient with how long her providers were taking at the first hospital and so took her files to a second in order to speed up the determination of a diagnosis and to get a second opinion in the process. For her part, Luz was pleased with how fast and thorough her providers were when she got into the second care setting. There, in just three days, they did additional tests and performed the mastectomy because they found her cancer to be so aggressive. They took her and her medical situation seriously.
[45] While everyone wants a skilled doctor, some experience more ease in finding one. Although she expressed overall satisfaction with her cancer care, Marcela (a woman insured by Medicaid) had no choice in providers. In less than a year, she had three different primary cancer physicians and was given little explanation for the changes. Luz was only able to access the second care site because of a friend who is a nurse who happened to work for one of their prominent cancer physicians. Luz called ten times over two days before asking this nurse’s help. During this time, she was told again and again that there were no available appointments and that they would not accept her insurance. Indeed, all of the women were well aware of the role money and insurance play. They either open up doors or close them. Similarly, all expressed an awareness of how financial dynamics/assumptions can get in the way of good patient-provider relationships.
[46] In all, the most poignant thing I heard from these women regarding what they want from healthcare providers is this: to be seen as a person. They used different expressions to get at this request, from positive statements such as Slimfat Girl wanting to be treated “as you would somebody else” to negative statements regarding how they do not want to be treated, such as not being a “bill.” While some of these statements explicitly used financial metaphors, all made reference to not wanting to be objectified.
[47] For example, Hannah is grateful that her doctor does not see her as a check or as income. Slimfat Girl expressed a similar sentiment when she said that she does not want to be treated as a “a paycheck,” “money in the bank” or as a “guinea pig.” And Marcela commented that it is important that providers do not treat patients “like a piece of furniture.” She described that the best scenario is when providers “forget it’s a job:”
[I] think that at least, even though it is a place of employment, one must think, if one is going to relate to another person as a human being and that this human being is going through a difficult situation, in this moment, one ought to forget it’s a job. Do you understand me? This person is going through a difficult moment and needs help, above all, support. One cannot think that this [work] is as it were-as if I were making, hum, furniture. “I am going to make furniture and I will throw the furniture there.” That-no. It is as if you take a piece of furniture and put it there-to take a person and check them and go-no.
[49] “Forget it’s a job.” That may seem like an odd or unrealistic request. Yet, perhaps her words offer an important reminder to healthcare professionals. While Marcela does not use the terminology, these comments speak to the difference many theological scholars have noted between a “job” and a “vocation.” A job is something one does to survive financially-to bring in the paycheck. In contrast, a vocation is one’s “calling” into which one puts one’s heart, mind, talents, and energy because one senses in a profound way that this is what “I was put on the planet to do.” Of course, while living out one’s vocation, making a living is still a basic necessity. The key difference is that the work is done out of a sense of purpose and service, not only for one’s own financial sustenance or enrichment. To build upon Marcela’s illustration, if one is working in healthcare primarily out of a sense of vocation, and not employment, he or she will not think of it as a paycheck so much as a way of serving and being present to others. In the process, Marcela thinks, patients will be less likely to feel objectified, “treated like furniture.”
[50] Marcela added that doctors need at least a bit of psychology background to realize what all is going on in their patients. She explained:
I think that the doctors have to co-penetrate [the situation] with the patient. In one way or another, many times the patient does not say exactly what [the problem] is, just what they feel. Sometimes [the patient] does not want to talk, is sometimes timid. For one or another reason, [the patient] does not want to say exactly what she/he is feeling.14
[52] Marcela later explained that what she means by “conpenetrar” is that the doctor enters the experience of the person in order to understand both it and the person more fully. Womanist ethicist and theologian, emilie townes, defines empathy in a way that resonates with Marcela’s understanding of “copenetrar”: “As a moral virtue, empathy means that we put ourselves in the place of another. This means sharing and understanding the emotional and social experiences of others and coming to see the world as they see it. We move away from ‘those people’ and ‘they’ language and behavior to ‘we’ and ‘us’ and ‘our’ ways of living and believing.15” Again, to relate in this way to patients, providers may very well need to be deeply invested in their work as a calling. To be authentically present to suffering on a daily basis is an exhausting task for which the tangible rewards can seem paltry. Moreover, it takes courage to possess and express empathy.
[53] In sum, genuine listening, honesty, compassion and technical skill all facilitate trust. And trust is perhaps the most essential foundation upon which quality patient-provider relationships are built. Yet there is another way of describing this quality. To conclude, I want to draw attention back to the notion at which it began. What patients most integrally need may be personhood. Hannah glowed when she told me that she sees her breast specialist “as one of the girls.” Her experience is a wonderful illustration of what is possible for patient-doctor relationships when the baggage of racial and socio-economic assumptions, bureaucracies and financial bottom lines do not interfere. It is not insignificant that Hannah had excellent health insurance and that she and this doctor shared a similar racial-ethnic background. Her words convey so much of what each of the women I spoke with would like from their primary caregivers:
HJ: [My breast surgeon]’s so down to earth, too, you know. When I saw her, I didn’t know she was a surgeon [laughs] . . . you know . . . just the way she, you know, just my experience with others, you know, doctors.
AV: She didn’t come in, total, all, “I’m the doctor.”
HJ: No. She was just one of the girls. She just had that air about her that, you know . . . . I didn’t see her, I didn’t see, you know, “I’m a medical doc,” you know. No, I didn’t see “Doctor.” I just saw a woman, you know. She’s a woman first, you know. Yes, she’s a doctor, but she’s also a woman.
AV: And maybe that’s how she saw you first, not as patient.
HJ: Not as a patient, but just as a woman, you know, like you and I, just sitting here talking . . . You know, she didn’t see . . . “here’s another bill.” [laughs]
AV: Right. “Here’s another check.”
HJ: Right . . .
AV: That shows a lot right there, you know.
HJ: Yes, it does.
AV: That you saw her as a woman, and she saw you as a woman, first. And that’s where you connected.
HJ: And that’s where we connect.
[54] In this relationship, Hannah and her doctor were first and foremost women-persons-in one another’s eyes. In a society where human interactions are often structured by and filtered through external roles and internal expectations, it is no small matter to be seen simply as a woman by one’s doctor and to have the courage and self-confidence to see one’s doctor in the same way.
End Notes
1 This article includes portions of a manuscript, Women, Ethics, and Inequality in US Healthcare: “To Count Among the Living”, which will be published by Palgrave Macmillan in the Fall of 2006.
2 These participants range in age from thirty-three to sixty-seven years old. Seven of them explicitly express a Christian faith. One has Christian roots in the Black Church and notes that although she does not attend anymore, she has a belief in a higher power than humankind. The women vary in how they describe their racial-ethnic backgrounds. Two identify as Black and two as African American; two identify as Latina; one prefers the term Hispanic (of these three, one specifically identifies as Puerto Rican and two as Dominican). One woman identifies as Black Puerto Rican, underscoring the fact that one can be both Black and Latina.
One woman first had cancer of the cervix and uterus in the 1980s before having subsequent diagnoses of breast cancer in the 1990s and in 2003. For the others, breast cancer was their first diagnosis. They have received cancer care at several different sites-private specialty hospitals, public hospitals and clinics, and teaching hospitals. Seven are presently insured: one has Medicaid; another has Medicaid and Medicare; five have employer or school-based insurance. One woman had lost her employer-based insurance and was uninsured at the time of the interview.
3 All names have been changed. Hospital names will not be used. Seven of the eight women with cancer chose their own pseudonym.
4 I interviewed an oncologist, two social workers, one nurse, one nurse case manager, and one third-year medical student.
5 Sandra Gavin explained that she was raised in the Black church, but is no longer an active member. She did not specifically identify herself as Christian. Sandra said that she believes in a higher power, but that she has a lot of issues with the church, particularly the Black church. She explained that she has problems with how many ministers are male while most of the active members are women and how ministers use women-she emphasized that she “uses the term ‘use’ loosely”-to serve a variety of functions in the church. She shared with me that her form of prayer is to ask her mother, as if she were still alive, to pray for her.
6 Given that the women are speaking of their personal faith and out of respect for it, I will not alter their language for God.
7 In Spanish, Marcela said: “Y gracias a Él me siento, me estoy sintiendo bien de bien, gracias a Dios. Yo agradezco este Dios que está arriba porque a eso todos los días le pido.” The Spanish used when speaking about God and faith is more beautiful than my translation renders. So I have decided to include original phrasings in places so that Spanish speakers may compare it with my translation.
8 “Pienso que Él es el apoyo, donde nosotros nos refugiamos, que si uno lo busco, si nosotros lo buscamos día tras día, Él nos va a apoyar siempre – incondicionalmente.”
9 “Siempre o sea Dios dice que Él es amor, ¿verdad? Y por lo tanto tiene que vivir en cada uno de nosotros. Si uno dice que uno ama supone es porque cononce a Dios. Entonces, Dios dice vamos a amarnos uno a otro, querernos. El amor es tanto significado que es, como te digo, algo no se puede ni siquiera definir. Entonces, vamos a amarnos, respetarnos, apoyarnos uno a otro para que así Dios se refleje en cada uno de nosotros.”
10 Wanda credited being raised in the church for grounding her in an ability to love and respect others. She articulates this connection this way:
I’ve always had a strong background in the church and been raised in the church since I was a little girl, and have always been raised to try to do, you know, the right thing, and treat other people with dignity and with the love of God. And so I think that that plays an important part for me because I want to always treat people the way that they’re supposed to be treated, with respect and dignity and the love of Christ and having them see that Christ-like example within me. And that helps me to just be able to really work with people and to deal with people and to relate to people, just having a spiritual upbringing.
11 In Spanish, the dialogue went like this:
MR: Bueno, por lo menos la dignidad de uno es yo digo como algo . . . que levanta a tu auto estima . . . Pero por lo menos tú tienes este auto estima alto, eso te levanta todo-lo que tú piensas de ti misma es lo que ayuda tener buena dignidad.
AV: Entonces dignidad no es de otra persona, que ellos le dan. Es lo que tiene dentro de si misma.
MR: Claro, porque yo pienso que por lo menos tú . . . . tienes que seguir en como ellos te van a tratar. Por eso, yo no sé, no me quiero definir como una persona diferente a todo los demás. Pero, si yo, por lo menos, trato de cuando tengo mi derecho-saber como voy a seguir para que esa persona no tenga el derecho de ofenderme de hacerme sentir mal. . .
AV: Pero ellos no tienen el derecho de hacerlo tampoco.
MR: No, no tienen el derecho de hacerlo, hacer sentir mal. Pero no son ellos que me van a solucionar ese problema, soy yo.
AV: Y usted tiene que tener la dignidad dentro de si misma que no-que es una forma de protección- para protegerse contra estas influencias y es-no pueden robar esta dignidad porque es properidad de usted.
MR: Sí exactamente.
AV: Y pueden enseñar respeto o no, pero la dignidad es su cosa – parte de su identidad – no depende de ellos.
MR: Sí, exactamente. No depende de ellos. Depende de tí. La dignidad depende de tí. Pero sobre todo, tienes que manterla siempre aunque pase lo que pase, ir para allá.
12 When I subsequently asked Marcela to elaborate more upon her perspective, she said, “If you think you’re garbage, how will that animate you? If you think you are intelligent, this will animate you . . . Even if they look at you negatively, you have to be strong, you can say no-and not let it offend you.”
13 Specifically, María named Share and Cancer Care as two organizations that have been very important to her.
14 This and the previous quotation in Spanish: Sí, pero pienso que por lo menos áun sea un sitio de empleo hay que pensar si va a relacionar con la otra persona, como ser humano y que este ser humano está pasando por una situación dificil, en este momento deber olividarse que es un empleo. ¿Me entiendes? Esta persona está pasando por un momento difícil y necesita ayuda, sobre de todo apoyo. No se puede pensar que eso es como si fuera-que estoy haciendo eh-mueble. “Voy a hacer mueble, voy a tirar mueble allí.” Eso no, es como cuando usted coge un mueble y ponerlo allí-coger a una persona checquerla y vete-no. Yo creo que los doctores tienen que conpenetrarse con el paciente. Por de una u otra manera, muchas veces el paciente no dice exactamente lo que es, simplamente lo que se siente. A veces no quiere hablar, a veces es timido. Por una u otra razón, no quiere decir exactamente lo que esta sintiendo . . . .Y tiene [el doctor] por lo menos un poco de psycologia-se puede dar cuenta de algo pero si no, si se ve simplamente como un mueble que está fabricando-pues, tira el mueble para allí y coger otro mueble . . .
15 Emilie M. Townes, Breaking the Fine Rain of Death (New York: Continuum, 1998), 175.