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LEARNING CHRONIC RHEUMATIC DISEASES BEYOND THE CLASSROOM:
EXPERIENCES AND INSIGHTS BY A MEDICAL STUDENT Charles A.C. Villamin
University of Santo Tomas Faculty of Medicine and Surgery
Manila, Philippines
 [Dr. Charles A.C. Villamin won the international Articulum Prize for Best Essay in Musculoskeletal Diseases with this entry. He is currently on his third year Orthopedics residency at the University of Santo Tomas]
With a combined feeling of accomplishment and overwhelming expectations at things yet to be done, I eagerly ride on the transition from medical clerkship (fourth year) to medical internship (fifth year) - at the University of Santo Tomas (UST) Faculty of Medicine and Surgery and UST Hospital in Manila, Philippines – hoping to further hone in my clinical skills to become a competent and compassionate physician.
I entered medical school thinking not so much of people – but rather thinking more of books and sleepless nights, and endless chapters of anatomy, physiology and pathology. I have always thought that if I can understand the disease and know what to do with it, I can deal with patients, considering them as merely secondary to the disease. That is, until (for scholarship funding purposes) I applied and was accepted as a research and academic student assistant at the UST Section of Rheumatology, Clinical Immunology and Osteoporosis from my second year of medical school up to the present.
As a student assistant, my task was to participate (and be a student liaison) in the implementation of the various educational projects of the Section integrated within the undergraduate medical curriculum, and in my spare time, assist in the regular activities of the Section e.g. research and patient support groups. Indeed, this special experience provided insights into the world of rheumatic diseases, which I otherwise would not have been able to obtain from the classroom nor medical books.
THE PATIENT AS THE BEST TEACHER: The Patient Partners Program
Arthritis diseases are a major public health problem. Not only are they potentially progressive and debilitating, but they also have a devastating impact on the patient’s quality of life. It does not typically cause death, but has a substantial effect on health, fitness, and physical, emotional, and social functioning.
Although the medical and economic consequences of arthritis are of great concern to researchers and clinicians, perhaps the most important aspect of the disease – especially chronic arthritis - is its substantial impact on a person's functional capability and quality of life. Persons with arthritis are hampered in their capacity to perform their day–to–day physical and social activities, and those with more severe disease tend to have the worst quality of life. To make matters worse, the burden of having a chronic musculoskeletal disease translates not only to the patient, but also to the caregiver and the community.
When the UST Faculty of Medicine and Surgery – through the Section of Rheumatology – adapted and integrated the “Patient Partners Program” in the instruction of Rheumatology for undergraduate medical students, this innovative educational tool further enhanced learning and interest in the musculoskeletal diseases by providing us a first hand experience of a personal encounter with an actual rheumatic disease patient.
The patient partners program in a nutshell is a patient-led, hands-on joint examination which aims at educating medical students, health care professionals, and patients. Supported by an unrestricted educational grant from Pfizer, Patient Partners’ instructors are specially trained and certified people with arthritis. A “patient partner” (with supervision from a rheumatologist) facilitates the workshop by:
• a certified patient partner (with rheumatoid arthritis [RA]) teaching the medical student basic musculoskeletal physical examination techniques;
• various rheumatic disease patients sharing their personal experiences on their illness including coping strategies with their pain and disability, and basic information on the different types of arthritis and management approaches including facts and fallacies;
• encouraging participation of medical students in an interactive discussion with the patient partner (osteoarthritis [OA], RA, systemic lupus erythematosus [SLE], fibromyalgia, chronic tophaceous gout), under guidance by a rheumatologist
Each session starts with a Patient Partner briefly discussing the history of his/her arthritis and its impact on quality of life issues. A “rapid screener” will quickly evaluate all joints (made more fun with accompanying music!). A focused examination will allow a more intensive review of the hand, wrist, shoulder, knee and ankle. This interactive program is designed to improve skills in physical examination and diagnosis. It provides a hands-on opportunity to practice observation, palpation, range of motion, and evaluation of joint function.
Initially, I half-expected a bunch of pathetic patients talking mechanically about their disease. Instead I found a group of very enthusiastic people who were actually happy, finding purpose in their infirmity. One can see it in their engaging smile and eagerness to listen and speak about their condition, always raring to go and start their sessions with us. I can also feel the excitement among my classmates, as word went about of these patients with medical book deformities actually teaching the medical students! The wonder of these workshop sessions is that these have achieved many things for the medical student: First, the student is reinforced on musculoskeletal examination skills in physical diagnosis as well as differentiating among common rheumatic diseases. Second, it provides better insights into the patient’s personal experiences with his/her disability, enabling the student to more effectively empathize with the patient. Third, it develops a meaningful interest in rheumatology and a more compassionate attitude to rheumatic disease patients.
Furthermore, being able to share their disease with others has helped the patient partners cope up with their seeming physical misfortune. I guess this is the wonder of programs like this - it is a win-win situation.
The patient partners program has opened up a new dimension to me as a medical student, where medicine is taught not as part of a book but as a part of a living, dynamic human being. It is a refreshing perspective, as compared to the theories and principles that are mentioned in medical books. And I could see the warm response from my classmates, many of them claiming that it was so far their most interesting “laboratory” class since start of medical school. Indeed, to interact with, touch and feel the hands of a person afflicted with RA establishes a connection between the student, the teacher and the disease that no medical book or reference can equal. It was humbling to further witness arthritis patients teaching the medical aspects of RA which they know so well. Seeing them, feeling their deformities, and listening to them has made RA (and other rheumatic diseases of other volunteer patients outside of the patient partners program) more human to me.
The theoretical aspect of the disease is better retained in our mind by actually seeing patients. It turns out that the best people who can teach a disease are the patients themselves. This experience provides a holistic view of our patients, underscoring the dictum that doctors should treat the patient and not the disease.
Sadly, despite the impact and extent of musculoskeletal disease it seems that little time is devoted to the learning of musculoskeletal diseases. (For instance, the workshop by patient partners only took up 4 hours of the entire second year medical curriculum).
Fortunately, as an academic and research assistant of the UST Section of Rheumatology, I had the opportunity to further witness the patient partners as they trained and prepared their “lesson plan”, under the supervision of the program’s director/ rheumatologist. I admire their courage, bravery, and motivation in getting out of their usual routine to learn medical terms and perform and practice physical examination until it becomes second nature to them, and harness their public speaking skills. It must be difficult enough to acknowledge that you have a life-long debilitating disease, much more so to learn medical terms (almost like a crash-course), and face a class of medical students. But they each did it with eagerness and enthusiasm, particularly contagious to me as a medical student.
LUPUS SUPPORT GROUP MEETINGS: Lessons in patient empowerment
The UST Section of Rheumatology, Clinical Immunology and Osteoporosis has a strong lupus advocacy, being instrumental in setting up lupus support groups, patient education programs and pioneering in lupus research in the country.
Unlike the more straightforward physical deformities of rheumatoid arthritis, the symptoms of lupus are more unpredictable, puzzling, intermittent, and sometimes seemingly unrelated: mysterious rashes, sore joints, fatigue and headaches. Thus, it is not surprising that the lupus patient can easily become bewildered, suffering not only from the disease, but also from the fear of death and dying and the lack of understanding about what this disease can and will do to a human life. It often leaves its victims suffering not only from the disease, but also from the uncertainty about what the disease will bring them, and how this will affect other aspects of their lives.
A regular activity is the monthly support group meetings for patients and their caregivers. These meetings also provided a workshop activity for medical students, during which we were given the opportunity to interact with various systemic lupus erythematosus (SLE) patients in an informal interactive session. (As a student assistant of the Section, I had the opportunity of attending not just one, but several of these meetings, beyond what was required in the curriculum. Some of my classmates also became interested enough to attend these meetings on their initiative, even after their Rheumatology rotation). Aptly labeled in the third year curriculum as a workshop on the “many faces of lupus”, it strengthened the adage that indeed, “no two lupus patients are alike”. I remember distinctly the faces, many different faces. It’s hard to believe at first that these people suffer from lupus - a chronic, potentially debilitating disease. It was sometimes difficult to distinguish patients from caregivers, if not for the red butterfly-shaped nametags of the patients resembling the malar rash that symbolizes lupus.
These first Saturday monthly meetings usually start with a lecture discussion on a chosen aspect of SLE or related topics like osteoporosis. The patients and caregivers (including us undergrads) became exposed to medical terminology and concepts. The presentations differed from med school, in that the concepts are presented simply, in layman’s terms and in a way more meaningful to the patients. I have seen patients eagerly asking questions – usually very practical questions - from the resource persons, most of them experts of their respective fields. I have also seen the satisfaction from their faces when their inquiries were properly addressed. This results in a better understanding of their disease and their treatments. Information, when properly explained, can indeed play a crucial role in enabling patients and families to cope effectively with the complexities of a disease. Each lecture session would strongly supplement the information given by their own physicians and help them cope better with lupus.
The second part of these meetings consist of introduction of newcomers, and “sharing” of their experiences with lupus, including ways they cope with their disease. I have been witness to the drama of their lives as narrated to the group, and could not help but be moved with their life stories. Occasionally, raffle prizes, for whatever reason/s are given to the delight of the patients. Many of them seem to have known each other for a long time based on how cheerful and how comfortable they are with each other. I have seen some of them good-naturedly teasing each other. Still, some seem to just be silently observing the others, content to be present in a meeting where they and their disease are better understood, making them feel that they are not alone. These meetings have become a venue for camaraderie among lupus patients and their caregivers.
The interaction and exchange of ideas that transpire in these meetings has led to an understanding of what they have and what they can do. Elements such as delivery of information, emotional and social support is essential to effective patient education. Active patient participation, patient control and patient education are simultaneously addressed in these activities. It has given them their catharsis: catharsis is therapeutic and liberating; it is both energizing and invigorating. I can imagine these patients and their families going home more enlightened, and perhaps in some ways, healed. I now realize the strong potential of these patient gatherings in developing the confidence of patients and caregivers, empowering them to become active participants in the patients’ healthcare.
These support group meetings also made me realize that there is an important psychosocial aspect of this disease that is not emphasized in the medical books, nor taught in the classroom. We may have known many things about lupus yet much about it remains unknown. In spite of wonders of medical science, lupus still hasn’t found its cure. Indeed, the wonder of science could only do so much. It can accomplish much more hand in hand with the wonder of human kindness and compassion. As treatments improve, we must find new and better ways to assist patients in taking a more active role in managing their disease. This is where patient support groups can make a major contribution.
The commitment of doctors, patients, resource persons and institutions, has created a synergy that leads ultimately to better patient care. It has been both inspiring and satisfying to see them working towards the same goal.
RESEARCH IN THE RHEUMATIC DISEASES: Medical students do have a role
My first-hand experience with patients suffering from chronic rheumatic diseases - broader and more intensive than the rest of my classmates - and in my special role as a student assistant in the Section of Rheumatology, made me further realize the impact of these diseases in the Philippines, a third-world country. This was reinforced by an atmosphere conducive for clinical and basic research in Rheumatology. Although my roles in some of these research undertakings were not likely significant e.g. interviewing patients and completing database forms, I continue to be intrigued by the challenge often posed by my Rheumatology consultants and trainees in determining clinical profiles of various rheumatic diseases which may be distinct among Filipinos.
Furthermore, my pre-medical school degree in Molecular Biology found interesting applications in working part-time (sometimes consuming my weekends and holidays!) as a laboratory assistant in performing genetic studies in lupus and other rheumatic conditions. It is intriguing enough to see the often unrelated signs and symptoms of rheumatic disease but to realize the complexity of their disease mechanisms is just fascinating. To be a part of a research project, a genetic study at that, in rheumatology is just a thrill for me. As a medical student, this was a singular opportunity for me to experience the art and science of medicine from “bench to bedside”.
SUMMARY
I had the (pre-med school) notion that musculoskeletal diseases are the most benign (almost “boring”) types of diseases. My experience as a medical student, and as a student assistant in Rheumatology – has radically changed that notion. The sessions with trained and motivated patient partners who have turned their chronic disabling disease into a productive and interesting endeavor were both humbling and highly educational. The lupus support group meetings made me realize the importance of patient empowerment: as one patient aptly commented, “I spend only a few minutes with my doctor, but almost a lifetime with lupus.” My brief, intermittent stint as a research laboratory assistant was enough to make me realize the vast potential for basic and clinical research among Filipinos with rheumatic diseases.
As I start my journey to becoming a physician, I will bring with me the individual faces and stories of patients with chronic rheumatic diseases, which by far have provided me (and my classmates) with the most real chronic disease laboratory in medical school. I realize that the management of these patients entails a holistic approach beyond the classroom and medical books, beyond office visits – with patient education and empowerment as vital elements. Indeed, these experiences have turned me into a staunch advocate for patients with chronic rheumatic diseases, and have challenged me to make a significant contribution in making this a better world for them to live in.
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