Literature and science: a different look inside neurodegeneration
2012; American Physical Society; Volume: 36; Issue: 1 Linguagem: Inglês
10.1152/advan.00091.2011
ISSN1522-1229
AutoresUte Burkhardt, Dorothee Lang, F. Mohr, Tina M. Schwarzkopf, Martina Zimmermann,
Tópico(s)Neuroscience, Education and Cognitive Function
ResumoIlluminationsLiterature and science: a different look inside neurodegenerationUte Burkhardt, Dorothee Lang, Franziska Mohr, Tina M. Schwarzkopf, and Martina ZimmermannUte BurkhardtDepartment of Pharmacology, School of Pharmacy, Goethe University Frankfurt, Frankfurt am Main, Germany, Dorothee LangDepartment of Pharmacology, School of Pharmacy, Goethe University Frankfurt, Frankfurt am Main, Germany, Franziska MohrDepartment of Pharmacology, School of Pharmacy, Goethe University Frankfurt, Frankfurt am Main, Germany, Tina M. SchwarzkopfDepartment of Pharmacology, School of Pharmacy, Goethe University Frankfurt, Frankfurt am Main, Germany, and Martina ZimmermannDepartment of Pharmacology, School of Pharmacy, Goethe University Frankfurt, Frankfurt am Main, GermanyPublished Online:01 Mar 2012https://doi.org/10.1152/advan.00091.2011MoreSectionsPDF (47 KB)Download PDF ToolsExport citationAdd to favoritesGet permissionsTrack citations ShareShare onFacebookTwitterLinkedInEmailWeChat awareness of the mutual impact of humanities and medical sciences has long been raised, and appropriate steps have been taken to implement this understanding in the medical curricula of both the United States and United Kingdom (8). The German curricula of medicine and pharmaceutical sciences, in contrast, do not currently envision the integration of humanities modules in their syllabi. However, being exposed to a heavily chemistry-focused curriculum, neither professional pharmacy students nor pharmacy PhD students undertaking research into biochemical and molecular disease processes are well informed about the nature of the relevant disease. This is especially true in terms of its impact on patient perception and personality, since natural and social sciences generally do not provide the humane perspective (4, 7). Using narrative texts gives the student the opportunity to empathize with positions s/he might otherwise never take (9). In fact, approaching specific illnesses or ailments from the narrative perspective complements rather than competes with the (patho)physiological or biological approach to the understanding of illness and suffering.Given our current situation, along with the knowledge that integrating narrative texts into healthcare education has proved to be highly beneficial (1, 2), we devised, inspired by earlier success in the reorganization of a physiology course toward more practical experience and student involvement (11), an optional "Literature and Science" module for pharmacy PhD students who conduct research into acute or chronic neurodegenerative disorders, such as fetal alcohol syndrome, stroke, and dementia. For the first year of study, the narrative presentation of Alzheimer's disease (AD) was chosen, primarily because this condition is one of the core areas of biochemical/molecular research in the students' immediate environment; the course would complement data discussion rounds and journal clubs focusing on this illness. In addition, pharmacological as well as neurochemical aspects of the condition are the course instructor's scientific expertise (6, 12) and focus of recent medical humanities research (9, 10). As such, the instructor's qualifications strongly supported a thorough crossing of disciplines in the first year of the course. Finally, this course also aimed at providing pharmacy PhD students, who frequently work in the pharmacy at night or weekends, with additional patient interaction skills. Given that other neurological conditions, such as depression or anxiety, are already the focus of undergraduate lectures in the module pharmaceutical care, the concentration on AD seemed all the more purposeful.This course pursued the following general goals: 1) enhancing the students' empathy with the sufferer (both caregiver and patient); 2) furthering their understanding of the broader meaning of the disease and its consequences; and 3) widening their field of vision, giving them additional opportunities for reading new books, exposing them to alternative avenues of thinking, and providing an occasion and platform for discussion. As such, the present work introduces a teaching strategy that, in its optional nature and in being held for a small class, represents the necessary first step and foundation to integrate medical humanities in environments where "literature and medicine" play only marginal roles.Course Concept and ContentsStudents met once every 2 mo to allow for sufficient reading time alongside research and teaching duties. The meeting time was set for Thursday late afternoons, i.e., toward the end of the main working hours and into the second half of the week so as to ensure that students would feel more "on top" of their research undertakings and emotionally free to dedicate time to work outside their core PhD project. In addition, this strategy avoided breaking up experimenting periods and times when participants would be too distracted or drained to engage. To ensure continuity and quality of the discussions, students were encouraged to commit themselves to the course for its entire duration of initially 1 yr. The number of participants oscillated between five and eight students, with intermittent attendance of Masters-level students who attended single sessions.The seminar sessions were held as spontaneous discussion rounds. While the course initiator suggested the reading material and devised the five session topics, she saw herself much rather as an engaging participant than as a guiding teacher. The discussion usually centered directly around disease-related issues that were broached in the narratives and literary themes as well as questions as to how literary aspects potentially supported the narrators' notion of their condition. Table 1 shows an overview of the course concept, i.e., the topics of the five seminar sessions, their main objectives, and the two centrally addressed issues in each session.Table 1. Course topics, objectives, and key elements in each sessionObjectiveKey ElementsSession 1: AD in fictionIntroducing AD and the interdisciplinary approach to the material1. Presentation of the illness and aspects of diagnosis and care2. The use of the motif of dementia and memory loss as a plot deviceSession 2: the AD caregiver's viewHearing the voices of a spouse and daughter caring for their demented family member1. The demands and strain placed on dementia caregivers2. Aspects of life writing: ethics and gender-related issuesSession 3: the impact of AD on the caregiver and patientApproaching the comparison of caregiver versus patient viewpoints1. The interactions between and mutual perceptions of caregiver and patient2. The power of fiction (compared with that of life writing) to focus our attentionSession 4: the AD patient's viewHearing the voices of a male and female AD patient1. The patient's outlook and personal confrontation with dementia and their agenda, including aspects of gender and collaborative writing2. The patient's viewpoint in fictional accountsSession 5: AD in filmClosing the course and commenting on the information drawn from the material1. The presentation of AD in visual compared with textual narratives2. The ethicality and consequences of presentationThis synopsis introduces the topics and objectives of each course session and highlights the two core elements addressed 1) directly relating to the actual gain of knowledge in clinical terms and 2) opening avenues for more literary approaches to the condition.AD, Alzheimer's disease.The relevant narratives were communicated 2 mo before the meeting date or at the meeting itself for the next course session. The selection of texts aimed at bringing together fictional and nonfictional narratives relating to various aspects of AD and was based on recommendations for texts suitable for the medical training curriculum as suggested by others (5). In fact, the texts gave insight into both the caregiver's and patient's point of view and the societal perception of the illness. Usually, two or more different texts were suggested, with the idea being that students would study at least one of them so that the discussion could evolve from a comparison of the texts. A complementary research paper (scientific, clinical, or sociological in orientation) was handed out before each session. These papers were generally intended to illustrate a specific aspect broached in one of the narratives or give insight into the seminar topic from the non-narrative point of view. Table 2 shows a summary of the reading material. Questions as to how the different sessions linked together, how the narrative and non-narrative texts complemented each other, and how the sessions would impact on professional practice are addressed below.Table 2. Course reading materialSession 1BooksSuter M. Small World. Zurich: Diogenes, 1999.PaperJanevic MR, Connell CM. Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. Gerontologist 41: 334–347, 2001.DescriptionSmall World is a fictional account centered around Konrad Lang, who gradually loses his memory. While the illness itself has an infantilizing impact on the patient, it also empowers him in that he gains access to early childhood memories that harbor the key to a crime committed by the woman who has employed him throughout his life. The additional paper supports a discussion on the adequacy of the societal response to the caring needs of our aging population, in that it deepens a consideration of the highly skilled (and plot turning) care provided by the Sri Lankan Ranjah.Session 2BooksBayley J. The Iris Trilogy. London: Abacus, 2003.Grant L. Remind Me Who I Am, Again. London: Granta, 2010.PaperGarrard P, Maloney LM, Hodges JR, Patterson K. The effects of very early Alzheimer's disease on the characteristics of writing by a renowned author. Brain 128: 250-260, 2005.DescriptionJohn Bayley describes his wife's, the English writer and philosopher Iris Murdoch, cognitive decline. While the major part of Bayley's memoir reflects the naturalness and ease of their life together, only the last 20% of the volume, presented as diary entries, gives the reader insight into the caregiver's difficulty to cope with the demanding situation. Linda Grant's memoir describes her mother's decline into vascular dementia, equally providing insight into the daughter's need to hold on to memories of her childhood in a family of Jewish immigrants. The additional paper provides a linguistic analysis of three of Murdoch's novels.Session 3BooksHeld W. Uns Hat Gott Vergessen [God Has Forgotten Us]. Jena: Quartus, 2000.Gerster A. Dazwischen Lili [Lili Inbetween]. Basel: Lenos, 2010.PaperBurns A. The burden of Alzheimer's disease. Int J Neuropsychopharmacol 3: 31–38, 2000.DescriptionThe two fictional accounts explore the relationship between caregiver and patient. Held's Monika is becoming more and more forgetful, while Markus loses himself in the loving care for his wife. Alternating diary entries report both the caregiver's and patient's streams of thought. Gerster's story, in places sarcastic in tone, is centered around Ana, who is forced to care for the ever-absent husband's mother Lili, while struggling with her own midlife crisis. The additional paper provides clinical insights into aspects of the caregiver burden.Session 4BooksDeBaggio T. Losing My Mind. An Intimate Look at Life with Alzheimer's. New York: The Free Press, 2002.Lee J. Just Love Me. My Life Turned Upside-Down by Alzheimer's. West Lafayette, IN: Purdue Univ. Press, 2003.Genova L. Still Alice. New York: Pocket Books, 2009.PaperWiltshire J. Biography, pathography, and the recovery of meaning. Cambridge Q 29: 409-422, 2000.DescriptionNewspaper journalist and professional herb grower Thomas DeBaggio gives an account of his early-onset AD that forces him into greater and greater dependence, confronting him with the loss of language and intellect. Jeanne Lee describes her day-to-day struggles with dementia in collaboration with the professional writer Cliff Reid, and the neuroscientist Lisa Genova tells the fictional story of the Harvard linguist Alice, who loses her memory and self to AD. The additional paper directs attention to the growing genre of illness narratives.Session 5FilmEyre R (Director). "Iris". 2001.DescriptionRichard Eyre's movie adaption of Iris thrives on the use of abrupt flashbacks as a tool to make emotional as well as physical disruption and discontinuity most tangible, illustrating the caregiver's broken self and the illness's disruptive power on a relationship.Suter's detective story provided a stimulating introduction to the course as a whole and the illness in particular, in part because it places a strong emphasis on the enabling powers of the disease. As such, the session focused on aspects of patient autonomy and independence, with these insights encouraging a more positive and enabling attitude toward patients in the professional practice. Since these considerations are closely linked to caregiver approaches, as also emphasised by the scientific paper, the discussion eventually moved toward aspects of caregiver burden, which led over to the second session. Bayley's account, a well-acknowledged point of reference for clinicians and gerontologists, addresses various aspects of being a caregiver. A comparison to Grant's text directed the discussion to gender-related issues and the author/narrators' agenda and choice of presentation. The insights from this reading help educate the pharmacist to specific caregiver needs.In pondering the question as to the caregiver's prerogative of telling the patient's story, the third session addressed the question as to the relationship between the burdened caregiver and the afflicted patient from a fictional viewpoint. Specifically, Held's and Gerster's texts provided the basis for further exploration of the spousal burden compared with the adult child burden, addressing the deeply personal and individual aspects of dementia and its care that are not accessible through, e.g., the scientific or clinical literature handed out for the same course session. With respect to professional practice, this session further enhanced the understanding that patient and caregiver perspectives differ significantly, especially given the discrepancy in outlook and agenda. The fourth session attended to the core question of the patients' attitude toward the confrontation with a terminal illness and their perception of their situation in family and society. With the awareness that AD patients are unable to tell about the final stages of the disease, the session included the consideration of Genova's fictional viewpoint, which gives insight into the part of the story that lies beyond the patient's tale. These reflections will further encourage empathy toward the increasingly challenged but still "able" patient and draw attention to their needs. Wiltshire's article then served to raise awareness of the increasing array of illness narratives.Finally, our course concluded using the highly appraised, although controversial, film "Iris." The film brought to light many of the previously discussed narratives of patient and caregiver and provided an excellent vehicle for a rich culminating discussion.Course Perceptions and OutlookTo encourage students to engage actively with this first attempt to cross disciplines in the life science research environment, the course was optional, and its organization and timeline respected the students' research commitments. With these considerations in mind, a quantitative evaluation of the course reception (also with respect to the aims as stated) was deliberately avoided. Instead, all students, who had attended every single seminar session, were asked at the end of the course to provide written comments on the module in general, its contents, and how they viewed its position within their PhD training (Table 3). All students clearly identified the importance of insight into the patient and caregiver's world of experience, which went beyond the medicoscientific point of view. Likewise, they acknowledged the "mind-extending opportunity" the course provided both in terms of the texts studied and the discussion rounds as such. In fact, the students acknowledged that the narratives as well as the subsequent discussions in this course pushed them to reconsider their personal attitudes and opinions about the demands that the disease places on caregivers and about the actual daily encounters with patients and in the pharmacy. We recognize that criticism is less likely to be expected in a strictly optional course, but given that the students were in different stages of their PhD training (three students in the second year and one student in the third year), their motivation to participate in this optional course speaks for itself.Table 3. Comments by the participating students on the Literature and Science course"The course was very motivating for me. Although every book/text that was discussed is rather sad or even frightening in a way it reminds you why you do all these experiments every day. By working only on biochemical levels you sometimes forget the patient behind. The course helped to understand that both (the physiological disorder and the suffering patient) have to be seen to understand the disease. In my opinion this is an important step to optimise appropriate therapies.""For me, the course built a bridge between the education during my pharmacy studies and the emotions I experienced towards relatives and friends. While I learned a lot about how to advise patients on diets, regimes and the drugs they take, I never realised, what it really means to them, when they suffer e.g. from Alzheimer's. Reading these books helped me to become more sensitive and insightful for the treatment of and confrontation with AD patients.""The course was a mind-extending opportunity complementing my postgraduate training. The literature was a multifaceted composition that illuminated the different positions and sorrows of patients, family members and caregivers. Both fictional and non-fictional texts were enriching. I became aware that there is no perfect solution to handle AD and that all parties concerned need support beyond the provision of drugs. I think pharmacists are in a good position to sense the patient's demands and give information on existing additional support.""The course offered the opportunity to discuss topics our society much rather excludes from the list of burning issues, i.e., the carer's personal sacrifice or the patient's increasing demands, and gave insight into how both patient and carer are 'afflicted' by the disease and experience its detrimental impact on their quality of life. The course also gave insight into how patients experience their illness–in contrast to how scientists or doctors view and handle it."Indeed, the students' dedication to attendance despite the pressing demands of their research engagements on time and energy was considered the most valuable indicator of the course's success. We expect to continue offering the Literature and Science course and will expand the focus into other neurological conditions, such as Asperger's syndrome, depression, or Parkinson's disease. Given the original purpose of the seminar, we believe that the course achieved its intended aims. Indeed, to paraphrase Martin Donohoe, this course contributes to the development of empathic and broad-minded pharmacists, who are mindful of the social and cultural determinants of neurodegenerative disorders (3). Finally, since the core group of students continues to grow steadily, this course may well establish itself as a "fixed" seminar within the departmental PhD curriculum as well as be integrated into undergraduate courses on pharmaceutical care.GRANTSM. Zimmermann's efforts to integrate aspects of medical humanities into the teaching of pharmaceutical care are supported by the Lesmüller Foundation.DISCLOSURESNo conflicts of interest, financial or otherwise, are declared by the author(s).AUTHOR CONTRIBUTIONSU.B., D.L., F.M., T.M.S., and M.Z. conception and design of research; U.B., D.L., F.M., T.M.S., and M.Z. edited and revised manuscript; U.B., D.L., F.M., T.M.S., and M.Z. approved final version of manuscript; M.Z. prepared figures; M.Z. drafted manuscript.ACKNOWLEDGMENTSThe authors are thankful to J. Klein for giving space to interdisciplinary approaches.REFERENCES1. Calman KC, Downie RS, Duthie M, Sweeney B. Literature and medicine: a short course for medical students. Med Educ 22: 265–269, 1988.Crossref | ISI | Google Scholar2. Charon R. Narrative Medicine. Honouring the Stories of Illness. New York: Oxford Univ. Press, 2006.Google Scholar3. Donohoe M. Exploring the human condition: literature and public health issues. In: Teaching Literature and Medicine, edited by , Hawkins AH , McEntyre MC . New York: Modern Language Association of America, 2000, p. 92–104.Google Scholar4. Downie RS. Humane medicine and literature. N Z Med J 111: 1–2, 1998.Google Scholar5. Greenhalgh T, Hurwitz B. Narrative Based Medicine: Dialogue and Discourse in Clinical Practice. London: BMJ Books, 1998.Google Scholar6. Härtl R, Gleinich A, Zimmermann M. Dramatic increase in readthrough acetylcholinesterase in a cellular model of oxidative stress. J Neurochem 116: 1088–1096, 2011.Crossref | ISI | Google Scholar7. Hunter KM. Doctors' Stories. The Narrative Structure of Medical Knowledge. Princeton, NJ: Princeton Univ. Press, 1991.Google Scholar8. Sweeney B. James Mackenzie Lecture 1997. The place of the humanities in the education of a doctor. Br J Gen Pract 48: 998–1002, 1998.Google Scholar9. Zimmermann M. Deliver us from evil: carer burden in Alzheimer's disease. Med Humanities 36: 101–107, 2010.Crossref | ISI | Google Scholar10. Zimmermann M. Dementia in life writing: our health care system in the words of the sufferer. Neurol Sci 32: 1233–1238, 2011.Crossref | ISI | Google Scholar11. Zimmermann M, Eckert GP. Enhanced student experience: an analysis of subjective evaluation and objective learning success after the transformation of a pharmaceutical physiology course. Adv Physiol Educ 34: 1–10, 2010.Link | ISI | Google Scholar12. Zimmermann M, Gardoni F, Di Luca M. Molecular rationale for the pharmacological treatment of Alzheimer's disease. Drugs Aging 22, Suppl 1: 27–37, 2005.Crossref | ISI | Google ScholarAUTHOR NOTESAddress for reprint requests and other correspondence: M. Zimmermann, Dept. of Pharmacology, School of Pharmacy, Biocentre N260, Max-von-Laue Strasse 9, Goethe Univ. Frankfurt, Frankfurt am Main 60438, Germany (e-mail: Martina.[email protected]uni-frankfurt.de). Download PDF Previous Back to Top Next FiguresReferencesRelatedInformationCited ByEin Bündnis von Medizin und Geisteswissenschaften — nicht nur für Demenz26 October 2021 | ProCare, Vol. 26, No. 8IntroductionFrom a 'Care-Free' Distance: Sons Talking About Cultural ConceptsIntegrating Medical Humanities into a Pharmaceutical Care Seminar on Dementia12 February 2013 | American Journal of Pharmaceutical Education, Vol. 77, No. 1 More from this issue > Volume 36Issue 1March 2012Pages 68-71 Copyright & PermissionsCopyright © 2012 the American Physiological Societyhttps://doi.org/10.1152/advan.00091.2011PubMed22383417History Received 25 August 2011 Accepted 17 November 2011 Published online 1 March 2012 Published in print 1 March 2012 Metrics
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