Disability Studies Quarterly
Fall 2004, Volume 24, No. 4
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Teaching About Disability:
Involving Patients with Disabilities as Medical Educators

Paula M. Minihan, Ylisabyth S. Bradshaw, Linda M. Long, Wayne Altman, Sonya Perduta-Fulginiti, Jeanette Ector, Karen L. Foran, Lillian Johnson, Paul Kahn, & Robert Sneirson
Department of Family Medicine & Community Health
Tufts University School of Medicine, Boston, Mass.
Email: paula.minihan@tufts.edu

Introduction

Medical schools should play a pivotal role in efforts to produce physicians who are knowledgeable about the needs of patients with disabilities, yet only a handful of medical schools offer formal content about disability and this rarely reaches a broad cross section of students. This paper describes a curriculum for teaching medical students about disability at Tufts University School of Medicine where people with disabilities, in the role of "standardized" patients, portray patients with a common primary care complaint in simulated medical interviews, and give narrative feedback to students about their behaviors, attitudes, and skills in the interview. In recognition of the importance of the feedback aspect of the interview and of the standardized patient's role as an authority, information giver, and teacher, we use the term "standardized patient educator" to describe their role. The goal of the curriculum is to improve medical students' preparedness for communicating with persons with disabilities, regardless of their eventual specialties.

In this paper, we describe the disability curriculum in detail, including information about curriculum development, the role of the standardized patient educators, the process used for their selection and training, and development of the case and supporting materials, and conclude with a discussion about lessons learned, including strategies for enhancing what medical students learn about disability, and future challenges.

Statement of the Problem

A growing body of literature is documenting problems with the care that people with disabilities receive from their physicians. People with disabilities know from long experience how their access to primary and sub-specialty care, allied health services, and durable medical equipment is dependent upon finding physicians with training, experience, and knowledge about their needs. Many physicians focus inappropriately on their patients' disabilities rather than on their presenting complaints; view their medical conditions or disabilities in isolation from their daily lives and aspirations; fail to provide accommodations for sensory, cognitive, and physical impairments; or view the quality of their lives negatively, all of which compromise the delivery of quality health care (Basnet, 2001; Burns, Batavia, Smith, & DeJong, 1990; Iezzoni, 1998, 2003, 2004; Iezzoni, Davis, Soukup, & O'Day, 2003; Iezzoni, McCarthy, Davis, & Siebens, 2000; Mitka, 1999; O'Day, Dautel, & Scheer, 2002; Paris, 1993; Zazove & Doukas, 1994).

Physicians may also fail to assess specific health vulnerabilities facing many people with disabilities which require particular attention. Such vulnerabilities include a thinner margin of health, increasing the risk for secondary conditions; limited opportunities for health maintenance and preventive health activities, such as cancer screening and physical exercise; and needs for durable medical equipment and other assistive technologies that only physicians can prescribe (Bowers, Esmond, Lutz, & Jacobson, 2003; Burns et al., 1990; DeJong, 1997; Gans, Mann, & Becker, 1993; Iezzoni, 2003; Iezzoni et al., 2003; Iezzoni et al., 2000; Perduta-Fulginiti, 2002; Wilber, Mitra, Walker, & Allen, 2002.)

Physicians, and others involved with medical education have begun to acknowledge that shortcomings in their knowledge, attitudes, and skills create barriers and poorer health outcomes for people with disabilities (Andriacchi, 1997; Basnet, 2001; Bowers, Esmond, Lutz, & Jacobson, 2003; Burns et al., 1990; Connell, 1998; Councilman, 1999; Crotty, Finucane, & Ahern, 2000; DeJong, 1997; Duckworth, 1988; Eddey, Robey, & McConnell, 1998; Iezzoni, 1998, 2003, 2004; Iezzoni et al., 2000; Iezzoni et al., 2003; Iezzoni, O'Day, Killeen, & Harker, 2004; Kahtan, Inman, Haines, & Holland, 1994; Marshall & Haines, 1990; Mitka, 1999; Phillips, Morrison, & Davis, 2004; Wells, Byron, McMullen, & Birchall, 2002; Zazove & Doukas, 1994). Andriacchi (1997), a general internist, summarized her preparedness to care for people with disabilities, with the statement: "Basically, what I think I have learned the most is that we just are not trained on any level to attend to the needs of the physically handicapped." This statement could almost certainly be extended to people with other disabilities and to other medical specialties.

Medical educators have yet to yet to arrive at a consensus about what physicians should know about the needs of people with disabilities, although most would agree it involves much more than technical competence (Bowers et al., 2003). According to Connell (1998), patients with disability "want someone who seeks to understand not only their disease, but their experience of illness – the composite of the patient's views, feelings, and responses to disease, and its effects on the patient's life and the lives of those with whom they relate" (p. 83).

An effort to define a core disability curriculum at Bristol Medical School in Britain supports Connell's emphasis on the importance of physician attitudes and skills (Wells, et al., 2002). This curriculum was developed by a group composed of equal numbers of disabled and non-disabled people because of dissatisfaction with other disability curriculums, which were developed primarily by clinicians and reflected their priorities and not necessarily the priorities of people with disabilities (Kahtan et al., 1994; Marshall & Haines, 1990; Wells et al., 2002). Six of the 13 topic areas deemed essential elements of Bristol's curriculum involved attitudes; four involved skills; and only three involved knowledge.

Helping students become aware of their own attitudes about people with disabilities; helping them learn to develop collaborative partnerships with patients with disabilities, recognizing their expertise and autonomy; and acknowledging their patients' sexuality were among the attitudinal issues considered essential. The four skill areas deemed essential all involved communication, including the importance of asking about and documenting the person's wishes, functional activities, and preferred communication method.

Other gaps in medical education with implications for the care of patients with disabilities include the lack of curricular attention paid to level of functioning, the importance of physicians listening and learning from their patients, and the value of interdisciplinary approaches to patient care (Andriacchi, 1997; Crotty, Finucane, & Ahern, 2000; Gans, 1997; Iezzoni, 1998, 2003).

The inattention to the issue of function is particularly problematic because patients' eligibility for many health, disability, and social insurance benefits are determined largely by functional assessments conducted by physicians. Yet the vast majority of physicians are not trained to think about how their patients function or taught how to evaluate their functional capabilities systematically (Iezzoni, 2003, from Pope and Tarlov, 1991). Few physicians, furthermore, are taught how to write "letters of medical necessity" or otherwise communicate their findings about their patients' capabilities and needs for services and supports in ways that are compelling and effective.

Teaching about People with Disabilities in Medical Schools

Current systems for educating physicians are not producing physicians with the requisite competencies to care for people with disabilities in a systematic way. Within undergraduate medical education, the focus of this paper, there are few initiatives devoted to teaching students about the needs of people with disabilities.

When the American Association of Medical Colleges' (AAMC) Curriculum Directory was queried about courses on disability, using "disability" as the keyword, there were no reports of any medical schools in the United States or Canada offering a required or elective course on disability in 2001-2002 (AAMC, 2004). The Curriculum Directory is an inventory of medical student education programs derived from ongoing surveys of medical school administrators. A number of medical schools are, in fact, be offering formal content on disability, albeit limited to brief, one-time, experiences, such as lectures, patient interviews, or inter-clerkship programs, which are not captured in the AAMC data base (Andrew, Siegel, Politch, & Coulter, 1998; Conill, 1998; Eddey et al., 1998; Gammon & Jacobsen, 2002; Parkin & Stein, 2001; Smith & Hasnip, 1991). Unfortunately, curricular offerings that reach a broad cross section of students are rare.

The situation in Britain is different, perhaps because the Education Committee of the General Medical Council specifically mentions disability as an important topic in undergraduate medical education (Marshall & Haines, 1990; Kahtan et al., 1994). Surveys there indicate a sizable proportion of medical schools were teaching about disability, although "few schools had clear aims and objectives" and "there was little evidence of integrated approaches involving a range of disciplines" (Kahtan et al., 1994, p. 387). Seventy-five percent of medical schools in Marshall and Haines' survey (1990) reported structured teaching about disability; many more reported "opportunistic" teaching (i.e., teaching when patients with disabilities are encountered during rounds). Medical schools used a variety of approaches to teach about disability, including: lectures and seminars; clinical examinations and history taking; experiential activities, like disability simulations, role playing, and visits to services supporting people with disabilities; videos; case presentations; and participation by people with disabilities in small-group sessions (Kahtan et al., 1994). In contrast to the episodic way most medical schools teach about disability, Flinders University of South Australia has implemented a comprehensive four-week mandatory disability rotation (Crotty et al., 2000).

A number of medical schools have acknowledged the expertise that people with disabilities can bring to medical education by including them as teachers (Eddey et al., 1998; Gammon & Jacobsen, 2002; Kahn, 2003; Mitka, 1999; Wells et al., 2002). Wells (2002) highlighted the importance of involving people with disabilities in medical education with this statement: "Our experience indicates that, from an educational point of view, recognition of the disabled person's own expertise and the idea of partnership is only fully realized when the disabled person is introduced as the teacher" (p. 788).

The Disability Curriculum at Tufts

Undergraduate Medical Education

The standard medical school curriculum is organized into the preclinical years, which are devoted to the basic sciences (years one and two), and the clinical years, where students learn the science and art of patient care through a series of clinical rotations or clerkships, mainly hospital-based (years three and four). All United States and Canadian students are required to complete clerkships in medicine, surgery, obstetrics and gynecology, pediatrics, and psychiatry. Many schools also require a family medicine clerkship; others have a primary care clerkship, or a combined primary care disciplines rotation.

Students must pass a three-step examination called the United States Medical Licensing Examination (USMLE) in order to be licensed as physicians; they must pass Steps I and 2 prior to graduation from medical school (NBME, 2004). Students are expected to encounter enough patients with similar medical conditions to prepare them to pass the Boards, but, in reality, the types of patients and the variety of medical conditions that students encounter vary tremendously. Given this range in exposure to clinical populations, there is no guarantee that medical students will interact with patients with disabilities during medical school.

One way that medical educators have sought to systematize clinical teaching is through the use of standardized patients, "the umbrella term for both a simulated patient (a well person trained to simulate a patient's illness in a standardized way), and an actual patient (who is trained to present his or her own illness in a standardized way) (Barrows, 1993, p. 443). Barrows introduced standardized patients to medical education in 1963 because he believed they offered several advantages over "real" patients, and these programs have grown, particularly since 1990. According to a consensus working group, standardized patients are valuable supplements to real patients for several reasons: 1) they guarantee students equivalent patient experiences; 2) they provide students with immediate feedback about their performances; and 3) they allow faculty to control the content and level of complexity of clinical problems (Barrows, 1993).

Medical educators agree that standardized patients, who are carefully selected and well trained, are highly competent to teach about interviewing skills, patient education, counseling skills, the content of a medical history (Stillman, 1993), and selected portions of the physical exam. In some cases, standardized patients who are health professionals and/or experts about their own medical conditions may also be able to teach limited clinical medical content. Standardized patients with disabilities, for example, typically have years of experience dealing with their own complex medical conditions and may be able to provide students with basic information about them.

Stillman (1993) acknowledged how challenging the standardized patient role is when she prefaced her list of criteria for selecting standardized patients with the comment: "My criteria, 1 through 10, are: they need to be very, very smart" (p. 466). Other qualifications include: an interest in medical education and in improving the quality of health care delivery, good communication and teaching skills, and a positive outlook (i.e., not harboring bitterness against the medical profession) (Stillman, 1993). A certain amount of recognition and empathy for the medical student as a young and inexperienced learner is also required.

Although the role of the standardized patient educators at Tufts is a teaching role, it is important to note that standardized patients are also used increasingly in medical education to assess whether students possess the requisite clinical skills and competence to advance in their medical training (e.g., Observed Standardized Clinical Examinations, or OSCEs).

Standardized Patients with Disabilities

Although many medical schools currently use standardized patients as teachers (Colliver & Williams, 1993), only a few appear to have recognized the potential offered by standardized patients with disabilities. The University of Massachusetts Medical School, the pioneer in this area, began an inter-clerkship program involving standardized patients with disabilities as instructors in 1993 and subsequently extended the program to include OSCEs in the medicine clerkship (Gammon, 2002; Gammon & Jacobsen, 2002). At the Matheny School and Hospital, medical students from the University of Medicine & Dentistry - New Jersey and Columbia University College of Physicians and Surgeons participate in an educational program involving standardized patients who are nonverbal, due to cerebral palsy, as part of their pediatrics and primary care clerkship (Eddey et al., 1998).

Description of the Disability Curriculum

The disability curriculum is sited in the Family Medicine clerkship, a four-week clinical rotation that is required of all students in their third or fourth year. During this rotation, each student is assigned to a family physician in community-based practice, where he or she sees patients under the attending physician's supervision. The rotation includes four didactic days where students return to the medical school for classroom-based instruction. The disability curriculum takes up approximately one-half of one didactic day.

The curriculum is sited within Family Medicine partly from circumstances of a shared department of Family Medicine & Community Health, bringing people together, and partly because the patient-centered focus and precepts of the specialty of Family Medicine were useful in developing the case. Additionally, TUSM's clerkship faculty was motivated to address this issue and willing to work to raise pilot funds to develop the program and to sustain it. The initial development of the curriculum was supported primarily by a small, 10-month grant from the Massachusetts Developmental Disabilities Council, and secondarily, by support leveraged from a federal Pre-doctoral Training Grant in Family Medicine through the Health Research and Services Administration (HRSA).

In the curriculum, people with physical and sensory disabilities, serving as standardized patient educators, play the role of patients in simulated medical interviews and give constructive feedback to medical students regarding their performance (Kahn, 2003). The "case" the standardized patient educators portray involves a common primary care complaint, shoulder pain, which is diagnosed as shoulder tendonitis. Students know that the case involves a primary care problem, although they do not know that the patient has a disability; they are required to take a comprehensive history, come to a diagnosis, and negotiate a feasible treatment plan with the patient. Shoulder pain was selected because it is not only a common problem for all adults, but it has particular implications for patients with physical or sensory disabilities, as they are critically dependent upon shoulder function (e.g., to use crutches, transfer from a wheelchair to an automobile, or handle an assistance animal). Shoulder tendonitis is said to be among the most common secondary disabilities for people with disabilities.

The standardized patient educators have been trained in the details of the case, which involves overuse from several potential activities, including wear and tear on the patient's shoulder from his or her long-term use of crutches, or need to manually push and transfer from a wheelchair to an automobile or toilet, or guide an assistance dog, as well as occupational overuse from the patient's job using a computer. These activities are aggravated by the patient's responsibilities for caring for a mother with a recent hospitalization. The standardized patient educator also brings up not wanting to return to his or her previous doctor because the doctor's behavior indicated discomfort with the person's disability. Although the standardized patient educators follow a script, each person has a different disability, which changes the content and direction of the individual portrayals.

The case was designed to compel students to address the intersection between primary care and disability, e.g., how much is the patient's presenting problem caused and/or exacerbated by his or her disability; what is the impact on the person's work, household responsibilities, and social and sexual relationships; are viable treatment options accessible to the patient (physically, geographically, and financially); and what kinds of supports will the patient require to relieve symptoms? As the case is focused on communication and information about people with disabilities, the interview does not include a physical exam.

The interviews take place in actual examining rooms of a hospital clinic that is not in session, and are typically observed by one other medical student and a member of the faculty. At the end of the clinical encounters, the standardized patient educators "come out of character," introduce themselves, and then direct a discussion involving both students and the faculty member in the room. Initially, the interviewing student is asked for his or her observations with the beginning question, "How do you think things went?" and given the opportunity to debrief. Then, the student observer and the standardized patient educator give the student interviewer direct feedback on the strengths and difficulties of the interview, or in the program's terminology, the "pluses and deltas," signifying the positives (pluses) and the parts that could be changed (deltas).

The focus of the feedback is on the student's attitudes and sensitivity to issues raised in the case, including the patient's negative experience with the previous physician, his or her fear of losing independence, the impact of the shoulder pain on the patient's home life, work life, and social and sexual relationships, and the patient's need for social supports and services, ordered by the physician, to facilitate rest, and ultimately healing. In addition, the observing faculty member comments on the medical issues. The feedback is narrative; students are not graded or otherwise assessed. The second goal during this debriefing time is to allow the students to ask the standardized patient educator questions about disability. Typically, 30 minutes is set aside for the interview and feedback process.

The final portion of the curriculum is a group discussion, where students, standardized patient educators, and faculty gather together and address disability issues and attitudes, reinforcing and extending information and insights gained during the interviews. The overall experience is also critiqued for potential improvement of the model.

From ten to 30 students participate in the Family Medicine clerkship in each rotation, for a total of approximately 175 students per year. As part of the curriculum, each student interviews one standardized patient educator and observes another. Each standardized patient educator typically simulates the case for four students per session. Following guidelines for community faculty, the standardized patient educators have faculty appointments as clinical instructors; they are paid per session.

Curriculum Development Process

An advisory committee, composed of people with disabilities, family members, and state agency representatives, assisted faculty by identifying the core issues and ground rules to guide curriculum development and delineate the attitudes and skills students would be expected to display. A major planning consideration was the small size of the grant and the brief ten-month funding cycle. The realities of the time constraints, coupled with budget constraints, drove several key decisions, which might have been different if resources had been less constrained.

Identification of core issues

  • All patients must be respected and valued.
    The curriculum must help to counter the perception that people with disabilities are "less than" people without disabilities, hence less worthy and deserving of good health care. Physicians express disrespectful attitudes behaviorally when they don't establish direct eye contact, speak to family members or other individuals instead of the patient, don't listen attentively, or don't position themselves on the same physical level as the patient. Physicians express disrespectful attitudes clinically when they ignore normative medical history-taking, such as excluding a sexual history for people with disabilities, or don't order the same procedures, diagnostic tests, or treatments, or provide the same basic preventive care for patients with disabilities as for everyone else.
  • People with disabilities have functional lives.
    The case must require students to explore the impact of the presenting problem on all aspects of the patient's life and also consider how the various treatment options will impact on the patient's functional capabilities.
  • The core of the interaction between the physician and patient needs to be compromise and negotiation toward a shared goal that is both realistic for the patient and conforms to the highest standards of patient care.
    Physicians will often prescribe a regimen for a patient with a disability that may be medically optimal but is simply not realistic, functionally or financially, for the patient or patient's family. It is not unusual for patients to keep reservations about their ability to follow a particular regimen to themselves.

    At the same time, some physicians appear reluctant to prescribe certain regimens, particularly those that address behavioral risk factors, like quitting smoking or losing excess weight, perhaps because they are reluctant to add to the challenges their patients face, or for other ostensibly benevolent reasons. A lack of straightforwardness on the part of physicians about what a person with disabilities needs to do in order to promote health and prevent disease, for whatever reason, is another form of neglect.

    For these reasons, the case must require students to negotiate shared goals with the patient, exploring the patient's expectations as well as their own, by asking questions like: "Is this something you can realistically do? If not, we'll need to come up with some other plan that will work just as well but is more realistic for you."
  • Inaccessible facilities and equipment present major barriers to care. The case must make students aware of the problem of inaccessible medical settings and the barriers they present to good patient care. These include lack of hi-lo examination tables, appropriate weight scales, and mammography machines that are accessible to patients who are unable to stand.

Identification of ground rules

  • The standardized patient educators must have disabilities that are apparent upon introduction ("You can't fake it.").

    Many people with disabilities report experiences with new physicians who appear surprised and uneasy when they walk into an examining room and encounter a patient with a visible disability. The advisory committee deemed it important that the case simulate this element of surprise, which would not be possible if the standardized patient educator had an invisible disability.
  • The standardized patient educator is his/her own medical reporter and the primary evaluator of the student's performance.
  • The case must cover basic issues, which are common to many people with disabilities, but also allow for the introduction of idiosyncratic issues, based upon the experiences and specific disabilities of each standardized patient educator.
  • Students must receive some preparation on basic issues related to disability before the encounter.

Recruitment and Selection of Standardized Patient Educators

Flyers, describing the program as "educating medical students about meeting the needs of people with disabilities, including how to appropriately and effectively conduct a medical interview with individuals with disabilities" were sent to over 100 agencies in Massachusetts that offered services and supports to people with disabilities. Over 60 persons requested further information.

Two faculty members conducted structured telephone interviews with 22 candidates, selected on basic criteria, such as availability, apparent disability, access to transportation, and clear interest. The interviewers focused on gauging whether candidates had the requisite skills and attitudes, manifested in qualities such as their articulateness, and their ability and willingness to address the medical students "where they are" as inexperienced learners. The interviewers were also interested in assessing the candidates' attitudes about physicians. It was important not to duplicate the negative experiences of some standardized patient modules where the standardized patients' anger at physicians interfered with the valuable teaching process (e.g., models teaching about gynecological issues).

Twelve candidates were invited, and nine participated, in an initial orientation and screening session. Among other activities, participants generated a list of what physicians should know about the needs of patients with disabilities, for use in formulating the case. They stressed that physicians' lack of acknowledgment of their lack of knowledge about disability presents a major barrier.

Eight participants successfully completed the training program, which was an intense 28-hour experience involving various structured and interactive exercises. Its aim was to teach the participants how to portray the script; behave with confidence and authority; engage in the case interaction while concurrently (and silently) evaluating and remembering the student's performance; and give constructive feedback.

Among the eight participants, five were women and three were men; their ages ranged from early 20's to early 60's; and they were employed in a variety of professions and occupations, including health care, health education, and psychotherapy. Seven individuals had physical impairments and used wheelchairs, crutches and/or assistance dogs; one had a visual impairment and used an assistance dog.

Case Development

Seven one-page case vignettes were reviewed by the advisory committee, and the case on shoulder tendonitis was formulated based on their deliberations and considerations. The case was written in a role play format, following a script, and included information on the chief complaint and history of the presenting illness; past medical history; family history; personal and social history; the patient's concerns; and information about the patient's behavior, affect, mannerisms and attitudes.

A number of supporting documents were also developed, including a "Disability Case Feedback Prompting Outline" for the standardized patient educators, a "Student Doorway Information" sheet, intended to simulate the kind of information available to physicians at the examining room doorway, and a handout including basic information about disability and resource materials, for students.

The case was pilot-tested by a standardized patient educator and a handful of students, video-taped, and further refined. The case debuted with 18 students and all eight standardized patient educators in the June 2002 block.

Discussion

Every medical student at Tufts currently performs a simulated interview with a standardized patient educator with a physical or sensory disability who comes to the physician's office concerned about "shoulder pain," and receives immediate and direct feedback from the standardized patient educator about his or her behavior, skills and attitudes in the interview. Student and faculty observers also provide additional insights and observations. Students have an opportunity to talk with each standardized patient educator informally about disability and to participate in a group discussion about their responses to and impressions of the exercise. Approximately 175 medical students participate in the curriculum each academic year. Many students report that they have had no interactions with patients with disabilities during their prior clinical training and express gratitude for getting a chance to practice and make any mistakes, "before it counts for real."

We are the first to acknowledge that we have no way of knowing if the curriculum affects how students interact with their patients with disabilities, although an assessment of the curriculum's effect on student attitudes is currently underway. Nonetheless, the students' assessments of the experience in group sessions and written course evaluations have been extremely positive. Students appreciate the immediacy of speaking with a person with a disability. The questions they ask the standardized patient educators most frequently deal with how to respectfully refer to a person with a disability and how to broach specific questions for better communication. Once students get past terminology, they ask a variety of questions about living with disability and barriers to health care.

We also acknowledge that physicians and their knowledge, attitudes, and skills about the needs of people with disabilities comprise only one of the many health care barriers that people with disabilities face, but, in our judgment, this is the barrier that a medical school is best equipped to address. Our curriculum includes a handful of lectures on national health policies, with a particular focus on the problems related to health insurance and health systems that create barriers for many Americans, including Americans with disabilities. Although these lectures may help to prepare students to be more effective caregivers and advocates for their patients, the level of information these lectures contain is very basic. The AAMC curriculum information website does not include a "health policy" topic, so it is difficult to know to what degree medical students are expected to know about systemic barriers to care (AAMC, 2004).

Tufts' experience with a disability curriculum that builds on the expertise of standardized patient educators with disabilities, coupled with the success of similar experiences at UMass and Matheny, demonstrates that the lived experience of people with disabilities, including their extensive experience with physicians, renders them particularly well-suited to performing the role of standardized patient educators. People with disabilities are the experts on living with disability and bring a perspective to the curriculum that health professionals are generally unable to provide. This model also provides students with an emotional and personal connection with the topic of disability. This is an important consideration if they are to remember the lessons of this encounter in the context of the overwhelming amount of material they must master before graduation.

The model is easily sited in the third or fourth years of medical school, when important "formative" teaching occurs. This is the time when young, impressionable students begin to observe physician role models and potentially emulate their behaviors and values. Currently, there is no way to guarantee that students will be exposed to attending physicians with informed and positive attitudes towards patients with disabilities. With this model, students observe close, respectful relationships between faculty and the standardized patient educators with disabilities with whom they teach at a critical time in their professional development. Finally, this model guarantees that every medical student will interview at least one adult with a disability before he or she goes off to residency training.

Those of us involved with medical education know that medical students typically begin training with high ideals, empathy, and compassion. We are also very aware that many people with disabilities report experiences with physicians who are disrespectful, provide unsatisfactory care, or are rude. Among the various explanations for why some physicians lose their idealism, is the theory that the medical education process is transformative and destroys students' caring and compassion (Coulehan &Williams, 2001). Fortunately, the vast majority of students who have participated in this exercise to date have not lost their idealism and empathy, at least not yet. The standardized patient educators frequently comment that their interactions with the medical students are markedly superior to many experiences they have had with practicing physicians, particularly relative to their attitudes and communication skills. Some, in fact, have commented that these students "give us hope for the future" (i.e., that quality health care delivery will become a reality for persons with disabilities).

We continue to learn many lessons from this experience. One is that Kahtan was correct when he observed that most medical schools teach about disability in a "bottoms-up" manner. According to Kahtan (1994): "The range and content of teaching frequently appeared to depend on the presence of a small number of committed enthusiasts rather than a clear vision of the key concepts that undergraduates need to know or the attitudes towards disabled people that should be encouraged" (p. 387). Only a handful of medical schools in the United States are known to offer formal content on disability, based mainly on anecdotal information, although it is difficult to know for sure, given limitations on how data on undergraduate medical education are compiled. These curricular offerings on disability appear to be brief, episodic experiences, provided by a small cadre of interested faculty, and rarely reach the broad spectrum of students.

It is important not to diminish the important contributions that committed faculty, including standardized patient educators, are making to the educational experience. Nonetheless, the absence of broad-based and consistent support for teaching about disability from the highest levels of undergraduate medical education leaves these initiatives vulnerable to attempts by stronger departments and faculty with competing interests and needs to push them aside.

The curriculum in medical schools is driven almost entirely by standardized tests, particularly the national Boards. The one, quickest way to ensure that health care issues related to disability are taught in medical schools would be to include questions about these issues in the national Boards, particularly in Step 2. It would also help if the efforts of the AAMC to delineate a core curriculum for undergraduate medical education included disability. Ideally, the issue of disability should be taught in every course and clerkship. Realistically, teaching about disability in a single clerkship is a good place to start, as long as it reaches every student and is viewed as only the beginning.

Without the curriculum pressure that comes from ensuring that medical students are prepared to pass their Boards, faculty who are interested in teaching students about disability must scramble for curriculum time and resources. Start-up costs, particularly for a standardized patient educator program like this one, are challenging and may present a barrier for medical schools that are struggling financially. We were fortunate to receive financial support for our initial development costs from the Massachusetts Developmental Disabilities Council and to leverage support from a federal Pre-doctoral Training Grant in Family Medicine from the Health Research and Services Administration (HRSA). Ongoing costs, such as paying standardized patient educators and faculty, and supporting administrative costs involved in running the program, can be problematic at times, but are comparatively more manageable.

It is important to underscore the fact that serving as a standardized patient educator can be challenging. Some may find it difficult, given their own past negative experiences with some physicians, to interact with young doctors-in-training who may display similar attitudes and behaviors. Logistical frustrations, such as finding an accessible parking space in the hospital parking garage, add to the stresses that the standardized patient educators face. Fortunately, these challenges are balanced, on average, by the standardized patient educators' desire to positively affect student doctors' views of people with disabilities. Still, additional funding must be considered in order to provide more support to the standardized patient educators, including higher wages, refresher training sessions, and assistance with transportation and parking. Funding is also essential to recruit and train new standardized patient educators to increase and refresh the available pool and to replace individuals who withdraw as their lives change.

Several issues remain unresolved. One involves how much training students should have about disability prior to the interview. Members of the advisory committee were conflicted between wanting to ensure the element of surprise, which they see on the faces of many physicians when they realize their patient has a disability, with the need to provide students with some prior education about disability. Our compromise was to provide students with a handout with some basic information or "tips," but this information is only an introduction to disability issues and may not be enough. We had hoped initially to supplement the written handout with an array of resources available by computer, but this remains undone. We have also talked about developing new cases but have been unable to do so because of limited resources.

Despite these particulars, we are satisfied that these students are at least off to a good start with a significant "standardized" experience, including explicit goals and objectives that guide them in delivering care and an experience that motivates them to care for "their" patients with disabilities. Ideally, what they are learning about interacting with patients with disabilities is just the beginning and will be reinforced throughout the remainder of their training. To reach this ideal for these medical students and others, and to further elevate the educational and practice standards for patients with disabilities, additional curriculum and models are required. Although the proximate beneficiaries of this curriculum are physicians, the ultimate beneficiaries are people with disabilities. Hopefully, these individuals will face fewer barriers to health care and experience better health outcomes as a result of these efforts. This disability curriculum provides an example for others to explore and build upon.

References:

American Association of Medical Colleges (AAMC) – Curriculum Directory (2004). Retrieved June 17, 2004 from http://services.aamc.org/currdir/section4/start.cfm.

American Association of Medical Colleges (AAMC) – Curriculum Directory (2004). Retrieved Sept. 7, 2004 from http://services.aamc.org/currdir/section2/staff.cfm.

American Association of Medical Colleges (AAMC) – Curriculum Management & Information Tool (CurrrMIT) (2004). Retrieved July 6, 2004 from http://services.aamc.org/currdir/section4/start.cfm.

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Copyright (c) 2004 Paula M. Minihan, Ylisabyth S. Bradshaw, Linda M. Long, Wayne Altman, Sonya Perduta-Fulginiti, Jeanette Ector, Karen L. Foran, Lillian Johnson, Paul Kahn, Robert Sneirson



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