Portal de Periódicos da CAPES

Teaching the patient impatience: art, ageing, and the medical consumer

1999; Elsevier BV; Volume: 354; Linguagem: Inglês

10.1016/s0140-6736(99)90270-2

1474-547X

Teresa Mangum,

Aging and Gerontology Research

Teresa Mangum is an associate professor of English at the University of Iowa, USA. Her recent publications in age studies include "Little Women: The Aging Female Character in Nineteenth-Century British Children's Literature", in Figuring Age: Women, Bodies, Generations (Indiana University Press, 1998); "Literary History as a Tool for Gerontology", in Handbook of the Humanities and Aging, 2nd edn (Springer, 1999); and "Passages of Life: Growing Old", in The Blackwell Guide to Victorian Literature and Culture (Blackwell, 1999). With Kathleen Buckwalter, she codirected an international summer research seminar, "Late Life: Representations, Perceptions, Possibilities" at the University of Iowa in 1999. Recently, a colleague and I, both members of the English department at the University of Iowa, agreed to visit one another's classes. He was teaching 18th-century literature; I was teaching a course called "Changing Concepts of Women", which I had subtitled "The Art of Aging". I was delighted to hear the lively exchange of ideas in his class about the novel Pamela.1Richardson S Pamela, or virtue rewarded (1740–1742). Viking, New York1985Google Scholar He was startled to encounter in mine a panel of five tough-minded young women with well-researched opinions who were lecturing about the menopause. In this essay, I argue that people like me and my students, who are outside the community of professional health care, need to educate ourselves about medical culture in general and, in particular, about the impact of medical culture on our perceptions of ageing. At the same time, I hope to convince readers of The Lancet that health-care providers need to consider the influence of representations of ageing in the world outside the hospital on the feelings, attitudes, and assumptions they bring to their work if they are to provide the best care to older patients. The context for the panel on the menopause was Fanny Flagg's popular southern novel, later made into a film, Fried Green Tomatoes at the Whistle Stop Card (figure).2Flagg F Fried green tomatoes at the Whistle Stop Café. McGraw-Hill, New York1988Google Scholar In the novel, a mutually sustaining relationship develops between the middle-aged, perimenopausal Edith Couch and the elderly widow "Ninny" Threadgoode. When Edith dolefully encapsulates her sense of age and angst, crying "Oh, Mrs. Threadgoode, I'm too young to be old and too old to be young. I just don't fit anywhere", Ninny pragmatically replies, "That's just silly talk, honey…. You're just going through a bad case of menopause, that's all that's the matter with you. What you need is to take your hormones and to get out every day and walk in the fresh air and walk yourself right through it. … And in the meantime, you get yourself some Stresstabs Number Ten!" (ref 2, pp 67, 69). The remainder of the novel details Edith and Ninny's poignantly humorous negotiations with time, their bodies, and the attitudes towards ageing that each faces in what Kathleen Woodward calls the mirrors of old age: one's own body, family, friends, nursing staff, doctors, impatient children, condescending adolescents, and popular culture. Drawing upon the psychoanalytical theories of Jacques Lacan, Woodward offers a powerful analysis of the reasons why those who long to remain young avoid the faces, bodies, and concerns of the old: "Given the western obsession with the body of youth, we can understand the 'horror' of the mirror image of the 'decrepit' body as having been produced as the inverse of the pleasures of the mirror image of the body of Narcissus. In part this may help explain the psychological phenomenon that as we age, we increasingly separate what we take to be our real selves from our bodies. We say that our real selves–that is, our youthful selves-are hidden inside our bodies. Our bodies are old, we are not."3Woodward K Aging and its discontents: Freud and other fictions.in: Indiana University Press, Bloomington1991: 62Google Scholar Driven by gerontophobic fears of impending mortality, we refuse to look steadily at or listen intently to anyone deemed old. Women, in particular, quickly learn how difficult it can be to command the attention of others–from check-out clerks to physicians–once they show signs of ageing. As an older female speaker in a poem by Randall Jarrell muses: "Now that I'm old, my wish Is womanish: That the boy putting groceries in my car See me. It bewilders me he doesn't see me."4Jarrell R Next day.in: The complete poems. 1968: 279Google Scholar Until we–and that "we" ironically includes those of us who are older–learn to "see" older people, it will be difficult to confront generational inequities or to renegotiate the social status of "the elderly" in health care or any other arena. The goal of my course was to look long and steadily at ageing, at our perceptions of old age, and at our assumptions and behaviours as they were influenced by the differences marking age identities. Like the other theoretical essays, poems, stories, fairy tales, novels, films, television shows, and age-inflected advertisements making up the syllabus, Fried Green Tomatoes addresses assumptions central to the course and to this essay. In effect, ageing is a lifelong not a life's end process. Apart from physical changes, an individual's experience of ageing arises from "age ideology". In other words, ageing involves beliefs, attitudes, and practices assumed to be commonsensical, normal, natural, and largely unalterable in our culture, despite endless examples to the contrary. Too frequently ageing is confused with conditions that are not specific to late life, such as poverty, illness, frailty, helplessness, even death. Any simplistic representation of late life, even a seemingly "positive" image, is limiting rather than useful. The first step towards understanding and undoing gerontophobia was to ask how we could overcome the barriers western society erects between generations. Fundamentally, we define age not as a progression but as an opposition. To be old is to be not young. All semester, our questions hammered steadily at that blinding opposition. Why, we asked, should young adults segregate themselves from children, middle-aged adults, elderly adults, and very long-lived adults? Could an altersroman, a narrative that begins on the threshold of old age just as the better-known bildungsroman begins on the threshold of adulthood, engage young and middle-aged readers? Students answered "yes" after encountering the elderly bohemian hedonist of Graham Greene's Travels with My Aunt;5Greene G Travels with my aunt. Penguin, New York1993Google Scholar the fierce, intelligent anger of a character abandoned to an isolated, claustrophobic care facility in May Sarton's As We Are Now;6Sarton M As we are now. Norton, New York1992Google Scholar the shrewd protagonist in Michael Dibdin's fusion of amateur detection and nursing-home gothic in The Dying of the Light;7Dibdin M The dying of the light. Vintage Books, New York1995Google Scholar and the survival strategies of two tribal elders abandoned by their Athabascan tribe in the Native American legend Two Old Women, retold by Velma Wallace.8Wallace V Two old women: an Alaska legend of betrayal, courage and survival. HarperPerennial, New York1994Google Scholar But what chance did the plot-twists of late life, such as a widow's romance in Vita Sackville-West's All Passion Spent9Sackville-West V All passion spent. Carroll and Graff, New York1991Google Scholar or the spiritual journey to an Afro-Caribbean past undertaken by the main character in Paule Marshall's Praisesong for the Widow,10Marshall P Praisesong for the widow. Dutton, New York1983Google Scholar have against movies for teenagers? Would younger students be moved by older women characters who were confronting breast cancer, the subject of Bobby Ann Mason's Spence + Lila11Mason BA Spence + Lila. Harper Collins, New York1988Google Scholar and Yvonne Rainer's experimental film MURDER and murder?12Rainier Y MURDER and murder.in: Zeitgeist Films. 1997http://www.zeitgeistfilm.com/current/murder/murder.htmlGoogle Scholar Could the emerging genre of the "life review", such as Carolyn Heilbrun's The Last Gift of Time: Life Beyond Sixty 13Heilbrun C The last gift of time: life beyond sixty. Ballantine, New York1997Google Scholar and Sarah and Elizabeth Delany's Having Our Say: The Delany Sisters' First 100 Years14Delany S Delany E Having our say: the Delany sisters' first 100 years. Dell Publishing, New York1996Google Scholar ignite the interest of readers on the brink of adulthood? Narratives and poems that focus on the role of caregivers pose an even greater challenge–for instance, Sawako Ariyoshi's portrayal of a middle-aged Japanese woman forced to sacrifice a hard-won career to care for her senile father-in-law in The Twilight Years 15Ariyoshi S The twilight years. Kodansha, Tokyo1993Google Scholar and Deborah Hoffman's stirring documentary film of her and her mother's struggles with Alzheimer's disease in Complaints of a Dutiful Daughter.16Hoffman D Complaints of a dutiful daughter.in: P.O.V. film. 1994http://www.pbs.org/pov/films/com.htmlGoogle Scholar In essence, each text taken up by the class asked whether narratives of late life could alter our culture's obsession with the "firsts" of youth: first love, first rejection, first bursts of self-knowledge, first pleasures. Members of the class chiselled away at the safe boundaries that the young and middle-aged use to keep the elderly and their own old age at bay: young versus old, us versus them, healthy versus sick, able versus disabled, strong versus frail, impatient versus cautious. Encountering representations of women across the life course, these students confronted their fears of ageing and their avoidance of older people and grew into avid proponents of elderly women–a group they will eventually join. The methodological approach of this course holds promise for medical training as well. A growing number of scholars from the humanities and social sciences, under the banner of "cultural studies", have undertaken the study of age and identity in recent years. Scholars of what Margaret Morganroth Gullette terms "Age Studies" argue that age identities–like gender, class, ethnic, racial, and other identities–largely gain their meaning from social contexts rather than from any essential, unalterable reality. 17Gullette MM Declining to decline: cultural combat and the policies of midlife. University Press of Virginia, Charlottesville1997Google Scholar, 18Cole TR The journey of life: a cultural history of aging. Cambridge University Press, New York1992Google Scholar, 19Featherstone M Wernick A Images of aging: cultural representations of late life. Routledge, New York1995Google Scholar, 20Woodward K Figuring age: women, bodies, and generations. Indiana University Press, Bloomington1998Google Scholar Although physiological changes certainly do take place in the body over time, cultural values determine whether a change signifies improvement, decline, or inconsequence. In the case of old age, the culture of medicine has had particular influence on the meanings we ascribe to the later stages of life. As the medical-humanities scholar Thomas R Cole notes, "Our culture is not much interested in why we grow old, how we ought to grow old, or what it means to grow old. Like other aspects of our biological and sociological existence, aging has been brought under the dominion of scientific management, which is primarily interested in how we age in order to explain and control the aging process" (ref 18, p xx-xxi). Much of the scholarship that shapes the field of literature and medicine takes the form of a dialogue between humanities scholars and physicians, often over the heads of other health-care personnel and patients. This conversation, which Joanna Rogers characterises as "physician-centric" (21Rogers J Being skeptical about the medical humanities.J Med Hum. 1995; 16: 265-277Crossref PubMed Scopus (3) Google Scholar, p 270) and Delese Wear describes as confined to "a site for privileged discourse" (22Wear D The colonization of the medical humanities: a confessional critique.J Med Hum. 1992; 13: 199-209Crossref Scopus (5) Google Scholar, p 203), takes place largely among those with highly specialised medical knowledge. However, such conversations include only a very small portion of what a scholar in age studies would describe as medical culture. My course, for example, assumes that most people's experience of ageing has largely been conditioned by a culture of medicine that extends far beyond the walls of doctors' offices to dialysis clinics, rehabilitation facilities, pharmacies, drugstores, the drug sections of supermarkets, magazines on health care, special-diet cook books, and a host of websites. Medical culture also reaches into the provinces of self-help, territory that encompasses alternative medicine, diet and vitamin fads, as well as exercise enterprises and protocols. Perhaps the most insistent, yet least acknowledged, influences on our perceptions of ageing are the voices and images we encounter daily in popular media. Consider the "medical" cultural work, as literary critic Jane Tompkins calls it,23Tompkins J Sensational designs: the cultural work of American fiction. Oxford University Press, New York1790–1860Google Scholar of film, television, and pulp fiction, not to mention advertising. Old age alternately signifies authority and victimisation in a long history of television series from Dr. Kildare and Marcus Welby, M.D., to Casualty, E.R., and Chicago Hope, not to mention soap operas such as the long-lived General Hospital. As Karen Riggs' study Mature Audiences shows, older American viewers not only are deeply attached to such shows, but also are using Public Access (free equipment and airtime offered in local markets–do-it-yourself television) to create their own programmes.24Riggs K Mature audiences: television in the lives of elders. Rutgers University Press, New Brunswick1998Google Scholar Numerous detective stories, from Agatha Christie's Miss Marple novels to the long-running series Murder She Wrote, depict the sometimes cooperative, sometimes antagonistic relationship between elderly characters and the medical establishment. Anxieties about mortality and medicine collide most spectacularly in speculative fiction such as Octavia Butler's Wild Seed25Butler O Wild seed. Warner Books, New York1980Google Scholar and Bruce Sterling's riveting Holy Fire,26Sterling B Holy fire. Bantam Books, New York1996Google Scholar in which egotistical protagonists pursue desperate means to prolong life. Thus, a host of stereotypes of late life assault us daily–from the self-sacrificing elder who martyrs herself to the interests of the young, to the greedy, overreaching parasite of the young; to the more recent stereotype of the wacky, slang-slinging, ageing hipster. Why should popular images of ageing matter to those in the "medical centre" that seemingly stands apart from soaps and psycho-thrillers? Charles F Longino provides one important answer: "One must consider the widespread independence and institutional skepticism found among members of the baby-boomer generation to appreciate the origin and growth of consumerism in medicine. It is that consumer-oriented generation that will give us a bumper crop of older patients in the future."27Longino CF Pressure from our aging population will broaden our understanding of medicine.Acad Med. 1997; 72: 845Crossref Scopus (1) Google Scholar These consumers find more and more medical information outside the medical centre, and this may help or hinder medical professionals. Second, healthcare workers are as subject as the rest of us to ideological constructions of age circulating in the larger culture. However, when a health worker absorbs denigrating messages about older people–such as the frequent representation of older people as having little interest or even worth, and as being annoying, beyond help, unable to make reasonable judgments, and closer to death than life–the consequences can be deadly. Cynics would argue that in the face of managed care, Medicare cuts, hyperspecialisation of health-care personnel, and arguments for the allocation of medical resources to the young, consumers need guerilla tactics, a view that the history of AIDS activism against the government and the medical community justifies. Even a less antagonistic perspective suggests similar conclusions. Medical journals such as The Lancet, Academic Medicine, the Journal of Medical Humanities, and Second Opinion increasingly publish thoughtful, persuasive, and inspiring articles by physicians, nurses, and humanities scholars; they convincingly argue that weaving the humanities into medical training and clinical practice improves communication between doctors and patients. But investigations of social relations involving power differentials–from feminist theory to studies of institutional power relations; to analyses of class, ethnicity, race, and age; as well as good sense–remind us of two important caveats. First, few of us are as sensitive to the rights of others as we are to immediate pressures to conform to existing procedures or to the exigencies of cost and efficiency. When power takes the form of specialised knowledge and costly time, one can expect to have to ask for, if not fight for, information and attention. Second, each of us has responsibilities as well as rights. Health practitioners can do their jobs more successfully, if less efficiently, when consumers are well-informed self-advocates. For those of us who do not work in health care, this means becoming educated, proactive, and even sceptical consumers. Which leads me back to my bemused colleague in the English department who found himself listening to panelists' wide-ranging reports about, for example, debates over hormone replacement therapy, a cross-cultural comparison of perspectives on menopausal women, a review of a collection of essays, Reinterpreting Menopause." Cultural and Philosophical Issues,28Komesaroff PA Rothfield P Daly J Reinterpreting menopause: cultural and philosophical issues. Routledge, New York1997Google Scholar an overview of websites that provided medical information about changes in women's bodies, and an account of interviews one of the panelists had conducted with her mother, aunts, and grandmother. The students in my class made impressive strides as intergenerational proponents, as cultural critics, and as medical consumers. By the end of the semester, students were breaking the generational barriers that our culture encourages, sharing books with their mothers and grandmothers, and initiating multigenerational conversations about often neglected practical matters we are likely to face in late life. In their own ways, my students laboured to meet the challenge that Addeane S Caelleigh issues to health-care deliverers when she asks when "medicine and its institutions will be ready to concentrate on the health of the elderly rather than their illnesses?" (29Caelleigh AS Academic medicine and the issues of aging.Acad Med. 1997; 72: 835-838Crossref PubMed Scopus (1) Google Scholar, p 835). Reading literature about illness and suffering offers health-care professionals insight and empathy, thereby fostering communication and care skills. In complementary fashion, my literature students were motivated by representations of ageing to develop authority, self-advocacy, research strategies, the determination to become informed consumers, a healthy scepticism about the social narratives–including medical narratives–about ageing, and the determination to question, analyse, and interpret medical language and the behaviour of health-care providers, just as they would any other aspect of culture. These changes in attitude and approach should improve medical consumers' chances of securing the best health care for themselves and their loved ones, particularly elderly intimates, who might succumb too easily to commanding figures in medical culture. From a layperson's perspective, receptionists, nurses, technicians, doctors, and social workers all wear faces of authority. I look forward to learning what influence the study of age ideology will have upon the minds behind those faces. Extract from "Next day". In: The Complete Poems by Randall Jarrell. New York: Farrar, Straus & Giroux, 1968. Reprinted by permission of Farrar, Straus & Giroux.