Seminars in Oncology Nursing, Vol 24, No 4 (November), 2008: pp 229-236
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OBJECTIVE: To highlight some of the explicit and implicit assumptions that contribute to suffering focusing on the sociopolitical and economic dimensions of the problem and the spiritual/religious dimension as one solution.
DATA SOURCES: Journal articles, web sites and qualitative research data, and personal experience.
SUFFERING AS A MULTICULTURAL CANCER EXPERIENCE
CONCLUSION: The nature of suffering is such that sometimes we are not able to rationalize it, or find any meaning in it. But, one can still find resources in faith and community, and by other means that may not make sense to an outside observer.
IMPLICATIONS FOR NURSING PRACTICE: For many people, suffering goes beyond the diagnosis of cancer. Faith and community can function as resources that help individuals to cope with this diagnosis despite the circumstances of their lives.
KEYWORDS: Cancer disparities, suffering, socialpolitical-economic oppression, colonialism
Margaret Barton-Burke, PhD, RN: Mary Ann Lee Endowed Professor of Oncology Nursing, University of Missouri St Louis; and Research Scientist, Siteman Cancer Institute, St. Louis, MO. Rev. Dr. Raimundo C. Barreto, Jr.: Pastor Ingreje Batista Esperanca, General Coordinator Centro do Etica Social Martin Luther King Jr., Salvador, Brazil. Lisa I. S. Archibald: REAL Program Director, Boston Plan for Excellence. Address correspondence to Margaret Barton-Burke, PhD, RN, College of Nursing, University of Missouri - St Louis, One University Blvd, St Louis, MO 63121.; e-mail:
[email protected]
Ó 2008 Elsevier Inc. All rights reserved.
0749-2081/08/2404-$30.00/0 doi:10.1016/j.soncn.2008.08.002
MARGARET BARTON-BURKE, RAIMUNDO C. BARRETO, JR. AND LISA I. S. ARCHIBALD
‘‘We are all caught in an inescapable network of mutuality, tied into a single garment of destiny. Whatever affects one directly, affects all indirectly.’’1, p 252 SUFFERING is an inevitable part of the human condition and, to some extent, to be human means to suffer. Individuals in any culture or social group, at one time in their life, have suffered and have tried to cope with their suffering. To cope with suffering, people try to understand, explain, overcome, and give meaning to it. Thus, trying to make sense of their experience.2 Suffering occurs at various times (eg, when we lose someone we love or when we are in physical or emotional pain). Cancer causes suffering because it brings with it physical and emotional pain. It is the disease that, when diagnosed, carries with it the fear of suffering. People are fearful of cancer because they fear the physical and psychological pain and the suffering that is inextricably linked to such a diagnosis. The suffering of cancer is magnified when it is diagnosed in individuals who are at the margins of our society, those who are poor, old, oppressed, and those who lack adequate housing, insurance, and the means to survive a cancer diagnosis. ‘‘Cancer health disparities’’ is the term currently used for a lack of adequate cancer care. However, for certain people the term does not adequately address the existential dilemma of what it is like to be diagnosed with a life-threatening illness and what it is like to not have the social, political, and economic capital available to deal with the consequences of such a diagnosis. The authors posit that this is suffering and it occurs disproportionately in certain groups in our society. Additionally, we suggest that an individual’s experience of suffering is historically, culturally, and socially located. This means that although suffering is an individual experience, the individual perspective is constructed by one’s history, culture, and socio-political structure, as well as one’s economic background, and religious and spiritual perspective. This complex
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perspective becomes important when attempting to understand suffering as a multicultural experience. The problem of suffering within a multicultural context is not a simple one, and we do not intend to approach the topic broadly. Instead, the purpose of this article is to highlight some of the explicit and implicit assumptions that contribute to suffering. Because of the scope and magnitude of the factors that contribute to the complex nature of suffering as a multicultural experience, we will focus on the socio-political and economic dimensions of the problem, and the spiritual/religious dimension as one solution that people use to cope. The nature of suffering is such that sometimes we are not able to rationalize it or find any meaning in it. But, one can still find resources in faith, community, and by other means that may not make sense to an outside observer. Yet faith and community can function as resources that help individuals cope, despite the circumstances of their lives. In this article, little attention is given to suffering as a multicultural physical phenomenon because our focus goes beyond the physical to the existential. Also, this article uses vignettes from Dr. Barton-Burke’s research as exemplars of the socio-political, economic, and spiritual/religious dimensions of suffering. Suffering revealed through personal narratives illustrates the complexities, the context, and the nature of this multicultural existential cancer experience.
THE NATURE OF SUFFERING
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ifferent people suffer in different ways. This is the story of Veronica, a 46-year-old single, black, working woman who found a lump in her breast, had a strong family history of cancer, especially breast cancer, was diagnosed with breast cancer, and had no insurance. When she joined the Black Women Breast Cancer Survivor Project in October 2006, she had completed treatment consisting of mastectomy followed by chemotherapy. The following narrative highlights the variety of ways that she suffered after her cancer treatments were complete and when she was expected to return to ‘‘normal.’’ ‘‘. I was still having financial difficulties because I didn’t know that because I was ill and would not be able to work that the unemployment checks that I was receiving,
which made life doable with being responsible and paying my bills, they cut me off. They said you can’t work. You cannot receive this unemployment insurance and I says you’re kidding right? And I remember breaking down. So then I said okay, what do I do? And they said to try and get my SSI on a temporary basis. I was denied that. They make you feel very bad too. People in those places, Social Security Department, they talk to you [emotional pause] they choose rude words, very demeaning, very condescending and I was talking to this one gentleman and he let up a little bit with his words and his tone because he found out that I’m a military brat and [emotional pause] and just different things and my father was 82nd airborne, but he said you know, this probably is not going to go through and even if it did, I would receive $839 a month, which my mortgage is sixsomething. So that was good. So that didn’t work. I had to go on Transitional Assistance, that’s $250 every 2 weeks. Three hundred and seventy-one dollars in food stamps [and] prior to becoming ill I had paid off all my credit cards. I was debt free and I was able to get my condo; so for me to now have to start using those credit cards was extremely upsetting to me because I felt very proud of myself at taking care of my mother and my son and being debt free. I wasn’t enslaved to the system anymore. I hate credit cards because their interest rate will be 18% or more. I tried to tell myself I’m not a failure. I’m not a failure. Those people only gave me $235 every 2 weeks. I had no choice, and if I was going to pay for my telephone bill or something like that, I had to go get the cash advance and I had to go and pay it and interest rate on cash advances is higher than on a regular balance and there were days and there were nights that I felt like [emotional pause] I just felt so ... Screwed, and I kept saying why are they screwing me like this? What have I ever done? And throughout my whole cancer treatments, I was angry. I was an angry individual and they sent me to an oncology psych and I said it’s so good to talk to you because I said I need to get this off my chest. I am so angry.
SUFFERING AS A MULTICULTURAL CANCER EXPERIENCE
I didn’t like my family. I didn’t like my son, who came over one day to make me some Cream of Wheat. He brought me this little bowl of Cream of Wheat and then he left and I went downstairs and there were dishes and stuff everywhere. He took my food and it wasn’t the food part because I’m a feeder. I will feed you, but he just messed up my kitchen and I didn’t have the energy to clean up my kitchen and I just felt [emotional pause] I don’t know, I just felt so taken advantage of and I just didn’t understand it and there were times when I would wonder, I said what have I done to deserve this? But thinking back over the treatments, it’s like I worried about my finances and not losing what little bit that I had, almost as much as worrying about the cancer. Those were the two things that really, really would wear me down and send me to bed. Now I’m blessed. I’m working and I’ve come to learn that I don’t particularly care for the people, their personalities that I work with, but its okay. It is okay because I have an office. I have Blue Cross/Blue Shield and I got a great 403 plan. They pay for my education . So it’s okay.’’ Veronica, Boston, MA, October 2006 Veronica’s narrative is an example of working without insurance; working and trying to achieve the American dream of paying off credit cards and buying a home of one’s own. It illustrates how close many Americans are to becoming poor if they are diagnosed with a catastrophic illness such as cancer, and how people become ‘‘enslaved’’ to systems of credit cards and cash advances. It illustrates how Americans can be living on the margin of making it one day and losing everything the next. Consider Veronica’s word, ‘‘enslaved,’’ which she used repeatedly during several of her interviews. To understand her suffering and the suffering of others, one must try to understand that those who are at the margins of society may view the world through a socio-political lens of oppression and/or colonization, using terms such as slavery to describe their lives.
A SOCIO-POLITICAL ECONOMIC PERSPECTIVE
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or disenfranchised individuals and communities whose lives are contextualized within a framework of colonialism, colonization, and
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oppression, the diagnosis of cancer can be seen as another oppressive condition, or as a deepening of conditions that have robbed them of the opportunity to live full, coherent lives. The paradigm of colonialism and colonization offers a framework for describing dominance over another and for understanding the suffering of the subordinate, creating a situation that keeps the subordinate in a state of oppression.3 To understand these ideas further, consider Shirley Ann’s narrative, where she describes herself as a cancer survivor from the perspective of an oppressed person who suffers not only because she has cancer. ‘‘I’m going to offer some perspective of . our history . this has not been the only challenge that we’ve ever met. We’ve had to meet challenges and I’m a child of the south. So we were born in a segregated era, Jim Crow era. Those of us that are older . So in my generation, we were the first to integrate for jobs and the first . to be in this decision making . They’re part of what we had to face in being in America and any place else and so we’ve been taught, our mothers taught us how to be independent, how to struggle. Our mothers struggled whatever the situation was. They might have been maids, they have been domestic workers . but they struggled always to make sure that we had and that we were given the best that they could offer and somehow to even confront the other system . So we are always in a climate of people, of having to struggle for what we get. . and so this is part of our heritage and so the struggle against cancer like I told you, this was only one struggle for me. Granted, it wasn’t the most challenging, but . So I knew how to marshal my forces. I knew to how to [gather] my emotions and my body, we’re going to war.’’ Shirley Ann, Dallas, TX, January 2007 Our discussion here is not limited to African Americans, American history, and slavery. The history of Latin America has a history of suffering, injustice, and exploitation, and to understand a Hispanic perspective we must consider context. Latin Americans have been a historically oppressed people, a suffering people. Their social, cultural, and political landscape is marked by centuries-old colonialism, genocide, and
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alienation. Theirs is a culture of MesoAmerican Indians merged with colonial Spanish. The landscape of Latin America and, by extension, its peoples’ identities, is shaped in relation to colonization by Portugal and Spain and the forced ownership of the Amerindians’ lands and their freedom, when their women were forced, their children enslaved, and their lives destroyed.4-9 The history and background of people influence their response(s) to cancer and the suffering associated with it. Additionally, immigrants and refugees who flee war-torn countries and try to make a ‘‘better’’ life for themselves in the United States are some of the other groups of people who suffer disproportionately from cancer.10 An earlier narrative in this article told about being enslaved by the economics of cancer. Several reports, including ‘‘Unequal Treatment’’ in 200311 and the recent work by the Agency for Healthcare Research and Quality are similar in their findings that socioeconomic status factors into the equation when discussing cancer care disparities.11-14 Research findings show that disparities, although influenced by socioeconomic conditions, persist even in the presence of health insurance; that minorities receive less care than others for the same condition; and care that is received is of lower quality.14-16 Thus, the lack of insurance coupled with the fact that some people with cancer are under-insured and the knowledge that cancer care is expensive all can contribute to one’s suffering.
SPIRITUALITY AND RELIGION AS A RESOURCE
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eligious understandings of suffering are important to help us understand how our patients cope with pain, anguish, infirmity, death, losses, humiliation, and hardships we face throughout our lives. The notion of justice is frequently tied to religious precepts and teachings, especially in most mainstream churches. Yet, because of the diverse world we live in and the overwhelming nature of the task at hand, we cannot look upon justice as solely the purview of any particular religion if we are to truly realize a more just society. This notion of justice has philosophical roots and is grounded in two ethical principles: human dignity and the common good.17-20 Religion is one of the main resources used to make sense of suffering. All the major religious traditions reserve a central role for the idea of suffer-
ing, and all of them try to explain or give some meaning to suffering. Each religion approaches suffering in a slightly different way, but all religions, in part, focus on overcoming suffering. It is important to acknowledge the major religious traditions on suffering. Table 1 reviews these traditions and offers an awareness of the complex and nuanced views of different religions.21-28 The major religious traditions offer principles to alleviate suffering by giving it meaning, by reframing fatalism within the context of ways of looking at life and perceptions across the cancer care continuum, and by highlighting how God, Allah, or a spiritual other guides one’s life in a positive rather than a fatalistic way. During a series of focus groups black women spoke the following words all related to their faith and how that faith helped them get through their cancer treatment. Narratives like these were the norm and not the exception, and usually talk about religion and spirituality began right away. It was integral to their conversation. ‘‘Yes I did. I prayed by His stripes I am healed and I had to keep saying it and I’d say it ‘by his stripes I’m healed,’ and even in surgery I was saying it. So my faith kept me holding on. I had something to hold on to that kept me. It was that faith that kept me and I’m so grateful for that today. and my family, I truly thank God for my family.’’ Missy, Boston, MA, October 2006 ‘‘As I was going through the treatment I felt like my faith was so strong in Him but I knew that I can also break down, I’m human. and then I would just sit on my couch in the living room and I would just look up. That’s my solitude place, and I spent time there, and I was talking to Him and I said ‘I’m sorry that I questioned you about my faith’ because I knew He was there for me because He was the one who got me through those treatments each day when I went alone, .’’ Little LaLa, Boston, MA, October 2006
SUFFERING AND NURSING INTERVENTIONS
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ancer care is based on a European-American model of understanding and treatment. Nursing interventions for disenfranchised people, including racial and minority groups, have been
TABLE 1. Selected Religions View of Suffering Tenets
Teachings
Understanding
Buddhism21 Two major divisions: Mahayana (including Tibetan, Zen, & Pure Land) Theravada
Four noble truths: Suffering is an important part of life Suffering is caused by selfish craving Suffering can be brought to an end Suffering ended will bring true happiness
Teaches that to live is to suffer Locates suffering at the heart of existence Seeks to help us understand the nature of suffering Seeks to help us overcome suffering by telling the cause of suffering (desire & attachment)
Once one is able to eliminate attachment and desire from one’s life, we should be able to extinguish suffering from our existence
Judaism22-24 Four major Jewish communities: Reform Reconstructionist Conservative Orthodox
Practicing Jews : Experienced much suffering in their history Many Jews cannot justify their suffering In the Ancient world people assumed that the world was under the direct control of God Suffering was also directly attributed to God
Traditionally, in the Torah & Talmud, suffering was related to sin—it was a result of sin Suffering was and continues to be hard to understand, especially because of the suffering of the innocent At the individual level, this relation between sin and suffering has been rejected At the general or societal level, such a connection is often made. ‘‘Actions have consequences: and wrong actions have destructive consequences. They cause harm, bring about suffering.’’
Such a rationale can work even for the suffering of the innocent. Example, is it is the poor who suffer the most throughout the globe, it is a result of sin, as expressed & maintained through unjust economic systems & political regimes.
Islam25,26
Most matters of everyday life are guided by religious instruction Affirms the oneness of God (Allah)
One’s suffering in a lifetime is a way to cleanse the self of shortcomings & sins The ability to endure the period of suffering & being patient will be rewarded Idea of suffering in Islam is based on the fundamental notion of the imperfection of human life Humans are on this earth so that their faith in God may be tested The test(s) many times takes the form of calamities and misfortunes
‘‘Verily, we have created man into a life of pain, toil and trial (Quran 90:4).’’
SUFFERING AS A MULTICULTURAL CANCER EXPERIENCE
Religion
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TABLE 1. Continued Religion
Teachings
Understanding
Hinduism does not have one singular doctrine or founder Sacred texts include the Bhagavad-Gita, Vedas, & Upanishads Tradition honors one god who is worshipped in different forms
Views suffering as punishment for misdeeds committed in this lifetime or past lives Living a pure & ethical life caring for others determines one’s fate in the future Individuals’ suffering is placed in broader context of a cosmic cycle of birth, life, destruction, and rebirth
One’s purpose or self-realization is achieved through many paths depending upon one’s dharma or moral duty in life The concept of karma suggests that one’s current way of life & actions will affect one’s future
Christianity28
Suffering plays an important role
The Cross is a symbol of torture, death & suffering The Cross is at the heart of the Christian message At the Cross one can see the emergence of a central Christian paradox The experience of suffering, which is destructive for many people, can also become revelatory or even redemptive for others Suffering can gain a redemptive character The paradoxal character of the Christian understanding of suffering, suffering continues to be bad in itself, in the midst of it God is revealed and love triumphs over evil & it becomes a place of salvation and cure The Cross, maximum symbol of suffering and oppression, has its instrumentality subverted by the new meaning it gains
An understanding of God sharing our humanity has important consequences for those who have to cope with painful experiences
M. BARTON-BURKE, R.C. BARRETO JR, AND L.I.S. ARCHIBALD
Tenets
Hinduism27
SUFFERING AS A MULTICULTURAL CANCER EXPERIENCE
developed largely based on this model. To provide comprehensive, culturally sensitive health care, nurses must be knowledgeable about the nature and impact of cancer on the multicultural aspects of the changing demographics of the United States. It is frustrating for those of us working in and conducting research with these vulnerable populations. The frustration comes from knowing that there are disparities in cancer and health care. Yet there has been little sustained long-term change that would improve the dilemmas posed in this article to lessen the suffering in the lives of individuals and their community. Recently, the Intercultural Cancer Council (ICC) released a report that sets realistic goals and offers an action plan for helping racial and ethnic minorities, those living in rural areas, older adults, and the poor. This report highlights the rising cancer rates in poor whites, and the widening gap in cancer care in other population groups.29 Table 2 highlights a 12-point action plan30 to alleviate suffering as a multicultural cancer experience.
CONCLUSION
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ancer is the great equalizer; it is diagnosed in rich and poor people alike. It is found in the young and old, employed or unemployed, insured or uninsured, and it is diagnosed in people regardless of race, class, or ethnic groups. Everyone with this diagnosis will suffer from this disease, but those marginalized members of society bear an unequal burden. These are people who cannot voice their concerns themselves. These are people who fall into the larger category of having a health disparity, when in fact they have a societal disparity which then gets played out in various arenas, such as health care. The terms ‘‘health disparities,’’ ‘‘health care inequalities,’’ and ‘‘reduced access to health care’’ are euphemisms for racism and discrimination for vulnerable and high-risk populations. Their suffering is existential and based on justice, and at times injustice, poverty, language differences, and non-Eurocentric traditions. The use of narrative scattered throughout has been our way of illuminating the complexity of this multicultural cancer experience. This article has highlighted some of the oft not talked about socio-political topics of oppression and colonialism that contribute to suffering. Other factors, like health insurance, contribute to the suffering of marginalized cancer patients and are
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TABLE 2. ICC’s Agenda for Action30 The following are the Intercultural Cancer Council’s 12 policy goals for action: 1. Fully implement and fund recommendations of the TransDepartment of Health and Human Services (HHS) Cancer Health Disparities Progress Review Group, which in 2004 listed 14 priority recommendations for HHS to take the lead in eliminating the unequal burden of cancer. 2. Fully fund the Patient Navigator, Outreach and Chronic Disease Prevention Act of 2005, which helps patients (regardless of race, ethnicity, language, or geography) gain access to prevention, screening, and treatment. This act was signed into law with strong bipartisan Congressional support, but not funded. 3. Enhance the collection of data on racial and ethnic minorities, such as expanding the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute to include underrepresented populations with differential cancer rates. 4. Increase federal funding for government programs that provide greater access to cancer screening programs, such as the National Breast and Cervical Cancer Early Detection Program. 5. Acknowledge and then redress and monitor institutionalized racism as a major factor in the miscarriage of health justice leading to the unequal burden of cancer. 6. Make tobacco control a priority, backed by new federal and state initiatives specifically targeted to minorities and the underserved. 7. Eliminate barriers to more effective pain management and palliative care for the medically underserved. 8. Increase the level of knowledge about cancer survivorship among the medically underserved. 9. Restore Medicare reimbursement for cancer treatment and cancer care in all settings in 2008. 10. Immediately implement and increase funding for the Medicare demonstration project providing access to oral chemotherapy drugs. 11. Enact the Patients’ Bill of Rights to provide protection to all cancer patients in managed care plans. 12. Achieve universal health insurance and establish a schedule to reach this goal by 2010.
oftentimes called barriers to health care, which lead to health disparities. This article begins to uncover the complexity of suffering as a multicultural cancer experience. However, due to the scope, magnitude, and multifactorial nature of the underlying and invisible aspects of the cancer experience, a comprehensive review and in-depth discussion is impossible. There is a need for different models of understanding and treating the disease. Interventions tailored for racial and ethnic minority groups and vulnerable populations like the poor are necessary to provide comprehensive, culturally sensitive cancer care.
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It is our hope that when patients enter the health care system for a cancer diagnosis that the provider will recognize and try to understand that there may be more to their suffering than a diagnosis of cancer. The nature of suffering is such that sometimes we are not able to rationalize it, or find any meaning in it. But, one can still find resources in faith and community, and by other means that may not make sense to an outside observer. Yet faith and community can function
as resources that help individuals to cope despite the circumstances of life.
ACKNOWLEDGMENT This paper was supported by research grants funded by the American Cancer Society, University of Massachusetts Medical School (grant no. IRG 93-033), and the Susan G. Komen for the Cure Foundation (grant no. DISP 0707596).
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