Patricia Benner, RN., Ph.D., FAAN
June 24, 2016 Copyrighted
This month, we offer all our newsletter subscribers free access to a wonderful new video on people’s responses to the news that someone has been recently diagnosed with cancer. Kristin Johansen and Ben Dziuba collaborated on this collection of people’s responses to the news that Ben was diagnosed with a rare and aggressive cancer, one week after they were married nearly six years ago. In this dramatized video they share the humor and pathos in peoples’ difficult responses, and offer alternative, more empathetic responses. Ben Dziuba and Kristin Johansen have received extraordinary support and love over the past six years, and are grateful for even the less than empathic responses. They sense that many people just do not know how to respond to being told about a cancer diagnosis. This is not a personal failure, most non-helpful responses come from one’s own coping with “bad news” and warding off threat, and even more importantly outdated cultural narratives about cancer diagnoses and treatment. Arthur Kleinman (1988 ) and other research (Benner, 1989; Benner, et. al., 1994; Benner, 1996; Fadiman, 1997; Charon, 2006; Frank, 1991; Frank, 2013) on the cultural meanings of illness, illuminate cultural meanings of illness and the shared cultural meanings of cancer. Responses to the Cancer diagnoses reveal moral appraisals embedded in the cultural meanings of cancer. For example, ‘some form of Karma, or past misdeeds are the cause of this dreaded diagnosis’ or, ‘If one could only manage their stress and exert a Cartesian-like mind over body response to their whole lives, then cancer could be avoided or cured’ (Damasio, 1994).
This 7 minute video offers the many taken-for-granted cultural meanings for cancer, as a death warrant, as something to be avoided at all costs, even to the point of fear of social contagion, wish-dreams about possible heroic alternative cures, and of course, the time-honored suggestion, that one should avoid stress in order to recover from cancer. Of course, having a serious illness, does create additional burdens and concerns. The ordinary difficulties of managing everyday life, in addition to managing complex new therapies, symptoms, and schedules, inevitably create stress even with the best “de-stressing” interventions. Who doesn’t fear that they might not be able to “manage all their stress” during such a stressful time?
This short video uses humor to present common candid responses, (and some not-so-common ones) that can help students think about the social meanings and commonly held cultural narratives about cancer. For example, students might think about how they themselves have responded to friends or family members disclosing newly diagnosed cancer, or students who may have survived a cancer diagnosis themselves will have first-hand experiences to share. In order to make the hidden cultural meanings show up, viewers can compare their responses of disclosures about diagnoses other than cancer, for example, responses to heart disease, HIV-AIDS, stroke and so on.
Nursing and medical students are taught natural scientific causes and treatment of disease. But these explanations are layered onto ubiquitous folk-lore and cultural meanings and explanations of illness causation and treatments. Students imagine that they are influenced only by scientific explanations, when in fact most nurses and physicians are also influenced by commonly held cultural meanings of illness.
Uncovering Personal and Cultural Blind Spots
Transformative teaching and learning must go beyond transfer of factual, or even conceptual knowledge, to help students see and experience their own familial and cultural blind spots about biases against particular cultural groups, overt racism, stigma related to illness and even the “proper way” to cope with illness (e.g. manage your stress in preferred, culturally familiar and understood ways). Deborah Kerdemann (2004) has called this kind of consciousness raising and enlarged perception and sensitivity to one’s own over-generalized personal experiences or sterotypes of cancer illnesses, as an example of “being brought up short.” Becoming a professional nurse, physician, teacher, lawyer requires taking up a commitment to be open, attentive, engage in active listening, and staying curious and interested in different experiences, and different ways of being in the world. Cultural diversity, much like bio-diversity, brings strengths, discoveries, adaptations, and ways of coping not available in other cultures. Each culture-language group has its own resources and blind spots. No one culture can be all-knowing. The genius of culture and language is that they situate us in the world with concrete ways to understand and act. Encountering cultural differences from one’s own ways of coping and being in the world provide us opportunities to discover our own hidden deeply held cultural meanings. For example, in our study of military nurses on the Naval Ship U.S. Comfort (Kelley, P., Benner, P., Benner R. Interviews of Military Nurses in Haiti In Progress, 2016) caring for Haitians after their major earthquake, many American military nurses were baffled and did not understand the solidarity, and comfort that Haitians gained through “singing their pain” in the evening before going to sleep. This was a soothing and strengthening cultural practice of solidarity for the Haitians. North American Nurses, coming from an individualistic culture, perceived the “singing of pain” disruptive to “other individuals” and to the U.S.A. rituals of “H.S.” (hour of sleep routines). The nurses had a cultural blind spot and did not have the cultural understanding that the social expression and comfort of singing together was an effective Haitian form of social support. Had the North American nurses understood this common Haitian practice of social comfort and sharing, they could have imagined that the singing would potentiate the sleep and pain medications, and enhance sleep rather than disrupting it. In the ritual of singing together, restored a sense of community and belonging were restored.
Professional formation requires discovering biases that conflict with effective and perceptive helping relationships. Student nurses can gain understanding of the challenges their patients, who have a cancer diagnosis, might encounter socially. For example, a patient with cancer was confronted by her own mother and other family members about her past eating and self-care habits as a source (if not the cause) of her cancer. She described to me the interviewer, plaintively that she had lived a healthy lifestyle, exercised, ate wisely, avoiding junk food, and food with chemical additives. She felt individually “blamed for her onset of cancer” by her own family (Benner, 2006). Blaming the individual for their illness is a common North-American cultural coping strategy. It falsely creates an immunity granted by blaming the “cause” of the “other’s” illness on individual weaknesses, so that the person feels separate, and distanced from the possibility of the illness befalling them. Common humanity and multiple causes of illness are forgotten, even if only briefly.
Professional education requires that students encounter diversity in ways that look for strengths, and situated possibilities in other cultures that are not available in one’s own culture. Openness and responsiveness to the richness of diversity rather than an enclosed cultural blindness to others or an inherent preference to sameness rather than diversity will render the nurse, physician, social worker, teacher, blind to the different possibilities and perceptions of others from different cultural backgrounds, languages, habits and practices. Increasing cultural humility, sensitivity, attentiveness, openness and respect for others are all essential for the formation of all helping professions.
One of the biases that come from our rational-empirical science tradition is to look for “single causes” for diseases like “the germ, virus or gene”. Added to this fallacy is our North-American propensity to see individual and individual causes rather than social and environmental causes. But for most complex illnesses, such as cardio-vascular disease, cancer, arthritis, there is seldom one single cause. Culturally we are prone to adopting a naïve geneticism, culturally imagining single genes much like bacteria, as the single cause of illness (Benner, 2004). But most chronic illnesses come from gene-environment interactions, and from multiple genes.
The Critical Pedagogies of Consciousness Raising
Many different pedagogies can reveal taken for granted cultural meanings, biases (both positive and negative) of students who want to expand their own coping and caring practices through being open, attentive, interested, and curious (For an example, subscribers can watch these videos: Learning Leadership in an Inner City, Homeless Health Care Center – classroom discussion, and Poverty Simulation Part 1: Setting up and Planning). Role playing exercises confront students with conflicts, misunderstandings, and biases, for example, against fear, anger, ignorance, or any differences of concern between others and oneself can create new perceptual awareness of oneself and others. Simulations that demonstrate common interpersonal conflicts and cultural misunderstandings, can bring the student up short when his or her own cultural stances block understanding or create breakdowns in communication. “Discussion triggers”, in the form of short video vignettes, newspaper articles, or editorials, or a recent disaster or health crisis, or current political debates about health care access and quality can be discussion triggers that reveal biases, and blind spots within a diverse classroom (Our website subscribers can watch the interview with Sarah Shannon in EducatingNurses.com video for more on this subject: Teaching for Ethical Comportment, Moral Imagination and Formation – this link will take you to the preview and the video.) By creating disclosive educative spaces, where the student is encouraged to identify sources of negative bias or impediments to understanding the client’s/patient’s point of view, or concerns, can stimulate curiosity, and a openness for self-discovery of cultural and personal meanings that will prevent empathic and attentive patient-nurse relationships.
The ANA Code of Ethics can be a resource for students to identify and examine where their personal and professional commitments may collide. For example, students may come into nursing school believing that a personal commitment to transparency and openness conflicts with the professional commitment to patient privacy and non-disclosure of any health information. Or, for example, students may personally oppose the practices of circumcision or non-circumcision, yet professional standards require that they do health education and care of both circumcised and non-circumcised infants. Such a discussion can easily lead into students identifying other personal or even religious practices and beliefs that may conflict with professional standards under certain circumstances. These are serious debates that require honest discussion and clarification of personal and professional standards and resolution of conflicts between the two. Such formative/transformative education is required, in order for a student to become a registered member of a profession committed to certain ethical standards related to health care. Nursing research has been on the cutting edge of how nurses and all health care workers can better serve the LGBT population. Yet this research is still relatively new and much more research needs to be done to better understand both the needs and impediments to care of this patient population. Professional nurses take an ethical stance on being empathic and responsive to health care access and care of patients of all kinds of diversity. The new ANA Code of Ethics takes a strong stand on nurses being committed to social justice as a part of promoting a healthier society (2010, Fowler). Authentic openness to diversity and to the challenges of becoming the kind of person that will be a safe, empathic, communicative and responsive nurse, cannot happen without consciousness raising pedagogies that reveal impediments, and biases that prevent understanding the other as “other” but not “wholly other” (Levinas, 1969). Professional standards require relational and communication competencies that depend on the person’s own openness, attentiveness, empathy and curiosity.
Creating Learning Activities Related to Consciousness Raising Related to Diversity
Consciousness Raising as a teaching strategy to help people become aware of their own taken for granted meanings, assumptions, biases, and personal and cultural blind spots. The Learning Activity for this month’s Discussion Trigger Video “The Stupid Things People Say When you have Cancer” demonstrates the kinds of questions that encourage self-discovery. Students will not easily discover their own blind spots without some guidance. Astute questions and classroom discussions can increase students’ awareness of other’s standpoints, as well as their own. While the learning activity is designed for this month’s video, the questions and approach can be adapted to other consciousness raising excercises. Consciousness raising, bringing into awareness cultural personal blind spots, requires a safe environment for exploration, in blame-free and trustworthy social spaces. The teacher has to be open, responsive and respectful of student’s right to disclose or not disclose what may feel personal or uncomfortable for them. See how Sarah Shannon does this by clearly stating that students need not disclose anything that they do not want to disclose (Again, this link leads to the preview and video with Sarah Shannon, Teaching for Ethical Comportment, Moral Imagination and Formation – preview available to all, entire video available to subscribing institutions). The classroom discussion should be explicitly established as confidential with no student comments being shared outside the room.
The learning guide is designed to help student’s reflect on their own familial and cultural background and their understandings and responses related to cancer. Students should be encouraged to raise their own questions as a result of their reflections on the video and learning guide. Setting up social spaces of disclosure and new levels of cultural and personal awareness requires social and cultural imagination and use of narrative discourse by the teacher. This is teaching through stories of first-hand experiences. It is at the heart of formative experiential learning for students in a practice discipline. By their nature, narratives of personal experience create a relational discourse that allows students to better understand other student’s and patient’s/clients’ perspectives. The art of teaching can flourish in this kind of self and other discovery oriented teaching and learning. The ultimate aim of being “brought up short” is liberation from impeding blind spots, and freedom to create new relational and coping possibilities for oneself and others.
References and Additional Bibliography
Barkwell D. Ascribed meaning: a critical factor in coping and pain attenuation in patients with cancer-related pain. J Palliat Care. 1991;7(3):5–14. [PubMed]
Benner, P., Wrubel, J. (1989) The Primacy of Caring. Saddleback New Jersey: Prentice-Hall
Benner, P., Janson-Bjerklie, S., Ferketich, F., & Becker, G. (1994) “Moral dimensions of living with a chronic illness: Autonomy, responsibility and limits of control”. In Benner, P. (Ed.), Interpretative Phenomenology: Embodiment Caring and Ethics (pp. 225-254). Thousand Oaks, CA: Sage Publishers.
Benner P: (2004)“The dangers of geneticism.” J Midwifery Womens Health; 2004 May-Jun;49(3):260-2 . PMID: 15134680.
Benner, P. (2006) “Stigma and personal responsibility: Moral dimensions of a chronic illness. In Purtillo, R.B., Jensen, G.M., & Brasic R. C., (Eds.), Educating for Moral Action A Sourcebook in Health and Rehabilitation Ethics Philadelphia: F.A. Davis Co.
Billings E, Bar-On D, Rehnquist N. Causal attribution by patients, their spouses and the physicians in relation to patient outcome after a first myocardial infarction- subjective and objective outcome. Cardiology.1997;88:367–72. doi: 10.1159/000177361. [PubMed] [Cross Ref]
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Charon, R. (2006) Narrative Medicine: Honoring the Stories of Illness. New York: Oxford Univ. Press.
Damasio, A. (1994) Descartes Error: Emotion, Reason and the Human Brain. New York: Penguin Press.
Fadiman, A. (1997) The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus and Giroux
Fowler, M. (2010) Guide to the Code of Ethics for Nurses: Interpretation and Application. Silver Springs: Maryland
Frank, A. (1991) At the Will of the Body. New York: Houghton Mifflin Co.
Frank, A. (2013 2nd ed.) The Wounded Story Teller: The Body, Illness and Suffering. Chicago: University of Chicago Press.
Kelley, P., Benner, P., Benner, R. Interviews with Military Nurses Caring for Persons injured in Haitian Earthquake. Federal Nursing Research Project Clinical Knowledge Development Study: Phase 2. In Progress, 20016
Kerdeman, D. (2004). Pulled up Short: Challenging Self-Understanding as a Focus of Teaching and Learning. In J. Dunne & P. Hogan (Eds.), Education and Practice: Upholding the Integrity of Teaching and Learning (pp. 144–158). London: Blackwell.
Kleinman, A. (1988) The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books.
Landrine H, Klonoff EA. Cultural diversity in causal attributions for illness: the role of the supernatural. J Behav Med. 1994;17(2):181–93. doi: 10.1007/BF01858104. [PubMed] [Cross
Levinas, E. (1969) A. Lingis, (Transl.)Totality and Infinity: An Essay on Exteriority (Philosophical Series) . Pittsburgh: PA: Duquesne Univ Pr