Interdisciplinary Approaches to Medicine and Society

INSTITUTION: University of Illinois at Urbana- Champaign

COURSE DIRECTOR:

Paula Treichler, Ph.D

Medical Humanities and Social Sciences Program,

Institute of Communications Research, Women’s Studies

(email: ptreich@ux1.cso.uiuc.edu)

ENROLLMENT: undergraduate honors seminar; elective

SEMESTER: Spring 1995

4:00-7:00 p.m. Tuesdays

(This syllabus, though revised annually, remains substantially the same from year to year. For further information, contact Paula A. Treichler, Ph.D.)

OVERVIEW

Many Americans identify health care as a critical concern. During the 1992 presidential election campaign, we saw the candidates of all parties formulating plans for reforming the health care system. Since then, we have seen the erosion of reform efforts. We also see the persistence of critical problems, media coverage that is largely inadequate, fierce political struggles among competing interests, and a health care system that continues to change in the absence of rational policy. Is the system that bad? If it is, why is it so hard to fix it? Can it be fixed? And does it matter? What does this huge abstract system have to do with the intimate transactions and daily experiences that make up what we each come to identify as "health," "illness," and "disease." This course will introduce you to current issues in U.S. health care, ranging from the concerns of individuals with their own health and illness to broader social concerns about the way our country provides (or fails to provide) health care to its citizens. You will learn about the health care system through lectures, discussions, readings, videos, guests speakers, participant-observation assignments, class presentations, and individual projects. We will spend time discussing interesting and controversial issues in medicine and health care including the ethics of human experimentation, debates over childbirth alternatives, reproductive technologies, the AIDS epidemic, and organ transplantation. We will talk about physicians and patients and what happens between them, including the effects on those interactions of race, gender, education, and other socioeconomic characteristics. We’ll explore some of the ways in which people have tried to express or represent their experiences of illness. We’ll also talk about how to decide what you want to be when you grow up and, if you want to be a physician, how you can best prepare for it (we will also talk about getting into medical school and alternatives to medicine).

We will meet once a week for three hours. This may seem long, but the time will be broken up with a number of structured activities including presentations by the instructor, presentations by students, class discussion, and regular student reports on health-related media coverage, specific diseases, and readings and videos.

READINGS

A packet of required readings will be available by the end of next week at Notes N Quotes, in Johnstown Center. Additional readings will occasionally be distributed in class. Bibliographies of readings and video materials for reports and projects are included in the syllabus; in addition, you will meet in small groups with the librarian in the Library of the Health Sciences for guidance on your research projects (102 Medical Sciences Bldg, 333-4893). Students will be expected to purchase some materials for media monitoring-newspapers, magazines, blank videos, etc. Videos for analysis will be on reserve and available for viewing in the Library. There are no required books for the course.

REQUIREMENTS

1. Attend class regularly and participate actively in class activities, including Health Watch (explained later). This requirement, along with #2 and 3 below, will constitute 25% of grade.

2. Prepare for class by completing reading and carrying out other regular assignments.

3. Lead one in-class discussion, by yourself or paired with another student (your choice).

4. Complete several short (2-3 pages) critical papers on assigned topics. (25% of grade)

This includes a written report on "your disease" at the end of semester (see below), summarizing the narrative you created for your disease, pulling together (as relevant) what you have learned about the medical, historical, social, cultural, political, and economic dimensions of this illness or condition as well as how patients experience it. Please (1) cite the resources you used that would be helpful for students in the future: people interviewed, titles of books and articles, movies or TV programs, media coverage, national hotlines or foundations, etc., and (2) select ONE of these resources (and include a copy with your paper) that would be especially pertinent to the topics we have covered in this class and could be included in the reading packet in the future. Turn in TWO copies of this report-one will be graded and returned to you; the other will be collected in a packet and made available to all class members.

5. Complete a midterm exam. (25% of grade)

6. Complete a final research project (10-page paper or comparable project) and present a brief oral report on it in class. (25% of grade)

Grades will be awarded according to performance in all of these areas. I expect written work to be typed and proofread. If you compose your work on a computer, please make sure the final printout is dark enough to read easily (print out in BOLD if necessary); if print out is on fanfold paper, please tear and staple my copy. Rules for life: ALWAYS put your name on work you submit; ALWAYS keep a copy.

COURSE OUTLINE

1. January 17 Health Care I: Introduction

Introductions, logistics, business, requirements.

Overview of class session format: Health Report, Media and Activities Watch, presentations, project. Sketch of debates on health care reform.

Video for analysis and discussion: Borderline Medicine, selected clips.

Public event/class visit: Patch Adams, MD

Media event: Made for TV movie tonight on baby with diseased heart (I think)

2. Jan 24 Health Care II: Overview of History and Current Debates

Health Report: disease preview/Media Watch/announcements

Readings for discussion: Estabrook, Newsweek article "The Revolution in Health Care"; clippings on health care reform. [NOTE: distributed with syllabus, not in readings packet]. Discussion of language: "reform," "revolution," "crisis," "health care system," "special interests," etc.

in-class video: McNeill-Lehrer NewsHour segments on the health care crisis and proposals for reform

Public event: Robert Jay Lifton, MD, MillerCom speaker

3. Jan 31 Health Care III: Quest for the Killers/Anatomy of the AIDS Epidemic

Health Report: Infectious disease, prevention, cure, epidemiology. Individual vs social/systemic prevention. Issues of representation. Readings for discussion: "A History of the United States’ Response to Epidemics," selected readings on kuru & AIDS [Notes & Quotes packet, pp. 1-51]

In-class video: AIDS clips; Quest for the Killers (PBS documentary on kuru), Leprosy: Can It Be Cured?

ASSIGNMENT #1 DUE: DISEASE SUMMARY

4. Feb 7 Ethical Issues in Health Care I: "Do No Harm"

Health Report

Readings [pp. 52-88] include excerpts from Bad Blood on the Tuskeegee Study and Dr. Byron Ruskin’s chronology, Treichler’s handout on informed consent. Dow breast implants; government radiation experiments. Darlene Clark Hine, "Race, Sex, and Class in Health Education"; Evelynne Hammonds, "Race, Sex, and AIDS: The Construction of `Other.'"

In class videos: Deadly Deception on Tuskegee study; NIH video on ethics in research involving human subjects; clips on radiation experiments

5. Feb 14 Ethical Issues in Health Care II: The Euthanasia/Right to Die Debates

Health Report

readings [pp. 89-110]: "It’s Over, Debbie" and other euthanasia/right to die readings

in class video: Dax’s Case

Turn in media log

6. Feb 21 Ethical Issues in Health Care III: Biomedical Research and Clinical Medicine

Health Report. Allocation of resources; socially-produced disease.

readings: [pp. 111-129] "A Second Chance at Life" (Newsweek article on organ transplants); "Leaving the Field" plus assorted clippings

Videos on ethics, transplants

Public event:Feb 22-23, College of Medicine

MARGUERITE CHAPMAN, JD, U of Tulsa

human genome

passive & active euthanasia

**more information will be provided**

7. Feb 28 ORIENTATION TO HEALTH SCIENCES LIBRARY RESOURCES (Victoria Pifalo)

Class: Ethical Issues in Health Care IV: Student Presentations on Media Representations ASSIGNMENT #2 DUE IN CLASS. Small groups on Extraordinary People, Make My People Live, Titicut Follies, La Operacion, Asbestos (NOVA)

8. Mar 7 REVIEW, DISCUSSION, CATCH-UP

Review major points covered in first half of course. Pick up MIDTERM EXAM: 2 HOURS, TAKE-HOME (CLASS NOTES AND READINGS CAN BE USED FOR REFERENCE). RETURN to Dr Treichler’s office by 5 p.m. Friday, March 10.

March 14 no class **SPRING BREAK**

9. March 21 Cultural Construction of Clinical Reality I: Stories of Sickness (Women in Medicine as Patients and Professionals)

Health Report

Readings [pp 140-167]: Charlotte Perkins Gilman, "The Yellow Wallpaper"; "Tales out of School,"

other material on women as patients and professionals.

in-class: video segments on childbirth from traditional obstetrics to Alien Nation

10. March 28 Cultural Construction of Clinical Reality II: Media Stories Health Report: in-class Analysis of brochure, psa, TV movie, etc.

readings [168-193]: Kalisch and Kalisch, "When Americans Called for Dr. Kildare"; Klass, "Take 2 Sitcoms and Call me in the Morning"; Treichler, "Seduced and Terrorized: AIDS on Network TV"

Video clips from movies, TV, other

ASSIGNMENT #3 DUE: 2-3 PP ANALYSIS OF HEALTH BROCHURE, PSA, AD, TV MOVIE, ETC. & turn in media log

public event:APRIL 1-3 WOMEN OF COLOR CONFERENCE

11. April 4 The Doctor-Patient Relationship: A Case Study in Aortic Stenosis

Health Report

readings [194-202]: Donnelly, "Righting the Medical Record: Transforming Chronicle into Story"; material on informed consent; other.

in class: Dr. Daniel K. Bloomfield, aortic stenosis case study video and discussion

12. April 11 Experiences of medicine and health care

Reading [203-237]: selections from Hilfiker, Healing the Wounds; other material on medical school.

Videos: med student/med school videos with discussion

ER, Chicago Hope, Becoming a Doctor, 48 Hours, etc.

13. April 18 How to Survive Medical School: Before, During, After

Health Report

In class: discussion with current medical and MD- PhD students

ASSIGNMENT #4 DUE: FINAL DISEASE REPORT (2 copies)

14. April 25 STUDENT PRESENTATIONS OF FINAL PROJECTS

15. May 2 STUDENT PRESENTATIONS, WRAP-UP, EVALUATIONS, DINNER.

ASSIGNMENT: FINAL PROJECTS AND OTHER OUTSTANDING WORK

DUE FRIDAY MAY 12 5 p.m.

Summary of Assignments

Jan 31 turn in written description and analysis of "your disease"

Feb 21 turn in media logs

Feb 28 Small group presentations on med ethics & media

March 28 critical paper on representation & reality- turn in typed 2-3 page analysis after class discussion; turn in media logs

MIDTERM: Pick up March 7, return March 10

(2 hour take-home open book)

April 18 Turn in final disease report (2 copies)

April 25 student oral presentations of final project; turn in media logs

May 2 student oral presentations of final project dinner

May 12 final project due

Other outstanding work due

Activities logs

Media logs

Disease reports

HEALTH REPORT

Each weekly class session will begin with a segment called Health Report. For the purposes of carrying out this assignment, you are going to specialize in an individual disease and an individual media outlet. The disease will be randomly assigned by me on the first day; the media outlet will be assigned, taking your resources and preferences into account.

I. "YOUR" DISEASE

"Your" disease or condition for the semester will be assigned during the first class session. After a brief report in Class #2, you will update the class on your disease on a rotating basis.

You can develop your specialization in a number of ways. First, I recommend that you "role play" to some extent and adopt this disease or condition as though it were your own. For most of you, this will make it easier for you to identify with a serious health problem, understand how people learn to live with their bodies under a wide range of circumstances, and to some degree "experience" the health care system from this interested perspective. Second, you’ll have the whole semester to "get inside" this disease so don’t worry if at first you have no idea what you’re doing. For the first class, all you’ll need to do is report what your disease or condition is and give a very general description of it and how long you’ve had it. Third, combine good research with imagination. I’ll expect you to develop a clinical profile of the disease that is accurate (basic classification of disease, who gets it, what causes it, its natural history, how it’s diagnosed), to identify national research or support organizations and/or local community/university resources for management and treatment, foundation support. I also recommend that you more or less role play as yourself. But I leave it to you to develop a personal case history (modifying your circumstances as needed to fit the typical profile of the disease), to decide how serious you want your case to be, and to come up with a plausible account of your day-to-day struggles (including visits to the doctor). Fourth, draw on the class assignments, materials, and resources to supplement your own research; use your disease to develop an interested perspective on the health care system (for example on economics, ethics, and communication). Finally, communicate with others: share information with classmates, talk with resource people who know about these diseases, keep up with the media, and talk with your family.

DISEASES Spring 1995

1. CARPAL TUNNEL SYNDROME (REPETITIVE STRAIN INJURY)

2. TOXIC SHOCK SYNDROME

3. ALCOHOLISM

4. HODGKINS DISEASE

5. PLAGUE

6. HUNTINGDON’S DISEASE (possible carrier of gene)

7. STEROID ADDICTION

8. PELVIC INFLAMMATORY DISEASE/ENDOMETRIOSIS (F)

9. CHRONIC GLOMERULO NEPHRITIS (chronic renal failure)

10. ANTIBIOTIC-RESISTANT TUBERCULOSIS

11. RADIATION OR OTHER ENVIRONMENTAL POISONING

12. CHRONIC EATING DISORDER (BULIMIA) (F)

13. EPILEPSY

14. CHRONIC FATIGUE SYNDROME

15. DEPRESSION

II. MEDIA WATCH

During Health Report, students will report and comment on the past week’s events in health, medicine, medical science, and specific diseases as covered in a range of media outlets. Students may volunteer to cover specific areas according to their interests and daily life activities. On any clipping or tape, be sure to mark the source, date, and page number. More information will be provided in a separate media packet. As a class, we will try to assure that the following outlets are covered:

PRINT OUTLETS

NATIONAL DAILY NEWSPAPERS [NEWSPAPER LIBRARY/CD ROM REFERENCE LIBRARY]: NEW YORK TIMES, LA TIMES, WALL ST JOURNAL, SAN FRANCISCO CHRONICLE, ATLANTA JOURNAL-CONSTITUTION

WEEKLY NEWSMAGAZINES (TIME, NEWSWEEK, ETC)

NEW ENGLAND JOURNAL OF MEDICINE, JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, SCIENCE-Library of the Health Sciences

CONSERVATIVE JOURNALS: COMMENTARY, NATIONAL REVIEW, ETC.

RADICAL JOURNALS: IN THESE TIMES, Z, ETC.

LOCAL PAPERS: CHAMPAIGN-URBANA NEWS-GAZETTE, DI, THE GUARDIAN, THE OBSERVER, RANTOUL PAPER, ETC.

MMWR AND AIDS WEEKLY-Library of the Health Sciences

FEMINIST AND WOMEN’S JOURNALS, NEWSPAPERS

ETHNIC GROUPS WITHIN U.S. (JEWISH, HISPANIC, AFRICAN-AMERICAN, CHINESE-AMERICAN, ETC)

WEEKLY WORLD NEWS AND OTHER SUPERMARKET TABLOIDS; TV SOAPS

ELECTRONIC OUTLETS

COMPUTER NETWORKS

CNN AND OTHER CABLE CHANNELS-NEWS, SPECIALS, OTHER

PRIMETIME NETWORK NEWS, NEWS SPECIALS

SOAPS; SITCOMS; DRAMATIC SERIES

MADE-FOR-TV MOVIES; THEATRICAL-RELEASE FILMS

TALK SHOWS: RADIO AND TV

PBS: MCNEILL-LEHRER, WASHINGTON WEEK IN REVIEW, DOCUMENTARIES

RADIO NEWS, NATIONAL PUBLIC RADIO, WPGU, WEFT, ETC

INTERNATIONAL MEDIA

WORD OF MOUTH, RUMOR, GOSSIP

OTHER

FINAL PROJECT AND CLASS PRESENTATION

STUDENT ORAL PRESENTATIONS

(scheduled for April 26 and May 3)

Student presentations may be on any topic related to the course material. You may present in pairs or small groups (if you make individual contributions clear). You may find it most efficient and rewarding to present some aspect of your final project(s), but you are not limited to this.

Criteria:

a. Presentations should be no more than 10 minutes per student (20 min for 2 students working together, etc.).

b. It should be well-organized; have a beginning, middle, and end; and practiced or rehearsed so that you remain within your alotted time period.

c. It should be original, intelligent, and not boring. While it need not be conventionally "academic" (see below), it must embody serious analysis and reflection on the material.

d. Handouts and/or outlines should be provided as appropriate (for example, if you use statistics, analyze a text, or otherwise present material that is hard to follow orally). As you know, I am very partial to handouts.

Format:

The choice of format is yours: it’s fine if you want to do a conventional oral report, slide presentation, video or textual analysis, or some other variation on assignments done for class. You are also welcome to do something more experimental: for example, devise a board game (The Politics of Health Care? The Health Care Game?) that the class can play, analyze a video or make your own, create a comic book (excuse me: graphic novel), create and perform a role play, soap opera, talk show, doctor-patient interview, court testimony or media coverage. You may want to carry out a survey or devise a simulation exercise for the class to carry out (for example, deciding how to allocate health care resources, or demonstrating how a hospital or health care plan makes money).

FINAL PROJECT (due Thursday, May 12)

The basic requirement is that you produce a 10-15 page paper on a topic related to the course material: it should be typed, proofread, and follow standard rules for citing references (any standard style is okay-let me know if you need more information). You may also do a project which is not a conventional paper but is equivalent in research time, brain energy, creativity, etc., and many of the possibilities listed above for the oral presentation might also work as the basis for a project. Again, it would have to reflect an intelligent analysis of the material, and would have to include appropriate documentation. Just to take an example, suppose you wanted to develop a board game, equivalent to Monopoly, called The Politics of Health Care. I would expect to see the physical game, with documentation of its rationale in a supporting document.

You should try to incorporate elements of the course into your project, including the library orientation. I will talk more in class about my views on what this project should accomplish.

ACTIVITIES LOG

Critical report of public event

2-3 EVENTS PER SEMESTER

(ADAPT FORM TO YOUR OWN PREFERENCES)

time and date event title event type, audience, sponsors comments

SUGGESTED TOPICS IN BIOMEDICAL ETHICS FOR SMALL GROUP PRESENTATIONS

1. REPRODUCTIVE TECHNOLOGIES

artificial/alternative insemination (paternal interests)

in vitro fertilization (frozen embryo case)

infertility treatments ("Father of infertility" case)

abortion: whose decision? (RU 486)

court-ordered caesarean sections

involuntary sterilization (La Operacion)

2. EUTHANASIA: ACTIVE, PASSIVE

PVS/irreversible coma

terminal illness

intractable pain

3. "RIGHT TO DIE"

decisions to forego life-sustaining treatment

decisions to withdraw life-sustaining treatment

landmark cases

4. DEFINITIONS OF DEATH

President’s Commission Report

5. ALLOCATION OF SCARCE RESOURCES

Oregon plan to ration health care

Callahan: Setting Limits

organ transplants

6. BIOMEDICAL EXPERIMENTATION ON HUMAN SUBJECTS

history (Tuskegee, gynecological techniques)

use of data gained through unethical experimentation (Nazi hypothermia work)

clinical trials (enrollment, design)

debates over AIDS drug testing

animal experimentation

Robert Jay Lifton: The Nazi Doctors

individual ethical violations, conflicts (Sprague case; NOVA, Do Scientists Cheat?)

7. CONFLICTS BETWEEN MEDICAL AND MORAL SYSTEMS

Christian Science (medical treatment)

Jehovah’s Witnesses (transfusion)

right to suicide (Final Exit)

abortion (differences among religions)

8. INFORMED CONSENT

Dalkon Shield

landmark cases

9. THE RIGHT TO KNOW/THE DUTY TO WARN

asbestos

silicon breast implants

10. DECISIONS REGARDING NEWBORNS

neonatal intensive care units (Gustaitis, A Time to be Born, A Time to Die)

treating multiply-handicapped newborns

Baby Doe regulations