Discussion Questions: Introduction There are many times in which medical doctors
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There are many times in which medical doctors are unable to adequately diagnose symptoms, illnesses, or diseases. There are also controversies surrounding the diagnosis and treatment for a number of diseases and conditions; tick-borne diseases present an extremely polarizing challenge for practitioners to diagnose and treat as well as for some patients to be relieved of their symptoms.
Prepare for the discussions by reading Peabody, viewing the film “Under Our Skin,” and by reading articles by Lickerman, Specter, and Tan. Amy Tan is an American writer best known for her book The Joy Luck Club. She claims to have neuroborreliosis, otherwise known as Chronic Lyme. Her diagnosis is one that is not supported by the Infectious Disease Society of America (IDSA). IDSA does not recognize chronic Lyme as a diagnosis, but instead would explain Tan’s symptoms as autoimmune in nature, not the result of an ongoing infection.
What are the controversies in diagnosing and treating the symptoms of Lyme disease according to the Infectious Diseases Society of American (IDSA) versus the International Lyme and Associated Diseases Society (ILADS)?
2) Compare the two viewpoints and explain which side you agree with and why?
3)Apply Lickerman’s suggestions in his blog to Amy Tan’s story. Remember to include doctors’ specific biases and different kinds of thinking in your answer. Was there anything that could have been different for her had she followed Lickerman’s suggestions? Please explain.
Module 2: Module Notes: Is Illness in The Eye of the Beholder?
In this Module, we learn about the transition from health to illness; the toll of chronic illness; the value of the Medical Humanities to help practitioners better care for us; and, our need as patients to be treated as more than biological processes but as feeling individuals as well.
Medical Humanities can be a way to help practitioners go beyond the biological and scientific to better relate to what a patient is experiencing. Graziano Martignoni writes, “The desire on the part of caregivers to work with and determine the meaning and value of the Medical Humanities is born of the desire to give better care to the sick, to treat people more humanely through concern for their dignity and fragility” (2012). We are the most vulnerable when we are sick, and it is this vulnerability that needs to be addressed by our caregivers. Physicians are well trained in diagnosing and treating disease, but they also need training in the emotional, psychological, spiritual, and existential dynamics that arise when one is ill. Medical Humanities offers this training by immersing us in artistic expression of all kinds that reveal the deeper human condition. Medical Humanities bring together the illness experience as both body and mind.
For many of us, our first encounter with mortality comes when either we or a loved one gets diagnosed with an illness. The road from initial symptoms to a diagnosis (if there is one) can be long and arduous. It starts with a shift in our health or well-being by a new discomfort. Often, we can identify what is wrong and what needs to be done. Sometimes it is a matter of time passing and a virus moving though our body. An illness that starts suddenly and is short-lived is called an acute illness. An example of this is strep-throat. We will all have an acute illness of one kind or another in the course of our lives. What is of concern are the chronic illnesses defined as lasting more than three months, if not one’s entire life. Examples of chronic illnesses are diabetes, heart disease, arthritis, cancer, etc. People living with chronic illness are at a higher risk for depression. A question we can ask is if an illness becomes chronic with symptoms that we manage to control, and we are able to participate in our lives pretty much as we had before the diagnosis, can this then be a return to health? Or does having a chronic illness, no matter how well controlled, change our status from once being healthy to being unhealthy? What do “healthy” and “unhealthy” really mean?
Boyd examines some of the terms that we use to describe our condition and some of them are fairly tricky. We tend to agree that a “disease” is a pathological process, and that “illness” is the experience of having that disease. “Sickness,” Boyd claims, is our social role once we are ill. When we are ill, we are designated as sick by those around us. In our everyday conversation, however, we say we feel “sick” when we feel unwell. It is Boyd’s intention that by defining these terms we may be better able to accurately communicate what is going on. However, some of these terms are “elusive,” such as the term “health.” Is health merely the absence of disease or illness? Does health also encompass one’s attitude toward one’s life, including the vicissitudes of life? Health would also include our mental status, or can one be healthy when also having some form of mental illness? How is health defined in the context of aging? Healing implies a wholeness that can be present even when ill. Healing and wholeness can be seen as a coming to terms with one’s physical situation, not as something to overcome, fix, or cure, but rather as a state of acceptance.
Even if we maintain a healthy lifestyle, we can get ill. Of course, it is our hope that taking care of ourselves, including having a handle on stress, will result in a strong immune system that can fight viral, bacterial, and malignant invaders. However, a combination of genetic and environmental factors in addition to aging affects our health as well. We are, after all, mortal, and as mortals we experience suffering from the pain of an illness. Richard Selzer expounds on “the language of pain.” He writes, “pain is fire, a ravening, insatiable thing that insists upon utter domination; it is the occasion when the body reasserts itself over the mind; the universe contracts about the point that hurts, if the pain is not placated with analgesic, it will devour the whole organism” (1994). Selzer singles out pain as the most significant symptom of illness while the least able to be fully grasped by others who are not experiencing pain themselves. The words that we have to describe are inadequate yet the sounds we make when in pain is the language and does communicate with those around us. The cries and screams and bellowing of pain reach deep into our collective understanding of what it is to be human and to suffer pain.
Once symptoms begin to mount or linger, we then seek medical advice. In the past, many people were fortunate to have a family physician who knew us as individuals in the context of a family and community and who knew our medical history. Currently, we live in the context of managed care which is in place to reduce the costs of providing health benefits and hopefully provide better care in general. As a result of managed care and its system of reimbursement, we are experiencing a shortage of general practitioners who earn less money for an office visit than a specialist. Often we are not seen by a physician but by a physician assistant or nurse practitioner. We are also in the day and age of electronic health records. While this is a good use of technology, so that our medical history can be accessed by everyone involved in our care, it also takes away from a personal interaction with our practitioners. A medical history that once required eye-contact has become a practitioner staring at a computer screen while typing in our information. We spend less time with our doctor during an appointment in part because doctors have a fee-for-service reimbursement system that rewards them by seeing as many patients as possible in the course of a day. As a result of this, much of our personal history and circumstances are not conveyed because there is not enough time to do so. Even in 1927, Francis Peabody warned that a patient’s emotional reality is as important as his or her physical condition and knowing this can aid doctors in optimal care.
We can agree that getting sick from time to time is part of life and, for some of us, it can be more often than for others. For the most part, we get well when treated appropriately and we can go on with our life, work, and pleasures. As mentioned earlier chronic conditions, however, cause many challenges to well-being. One chronic condition in particular called Lyme disease is a challenge not only for the one suffering, but for those practitioners diagnosing and treating. Lyme is a tick-borne disease caused by the bacterium Borrelia Burgdorferi. Infected ticks travel on deer as well as white-footed mice. As a result of suburban development and climate change there is an increase in white footed mice and the tick-borne diseases they spread. An infected tick can contain other bacteria in addition to Lyme. In its acute stage, Lyme can be successfully treated with an antibiotic. Quite often, a person can be bitten by a tick and not develop the telltale rash and bull’s-eye that have been the customary signs of a tick bite. Or, the current and standard blood test used to detect Lyme may result in a false negative. In these and other cases, the person may not be treated for acute Lyme when in fact he or she has been infected by the bacteria, also known as Spirochetes (which are also the cause of syphilis).
There are two very distinct camps when it comes to the detection and treatment of Lyme: The Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS). ILADS takes the position that acute Lyme can lapse into chronic Lyme with a myriad of symptoms including neurological, orthopedic, and psychiatric concerns. ILADS take the position that for some extremely sick people, it can take months and even years of treatment to rid the body of the bacteria. ILADS doctors claim that Spirochetes, which have not been killed off by antibiotics, can move from the blood stream and survive in neurons and tissues causing symptoms. Their treatments include a combination of antibiotics as well as complimentary treatments including diet changes and supplements. IDSA, in contrast, believe that a standard dose of an antibiotic can kill the Lyme bacteria and any ongoing issues. This is called a Post-Treatment Lyme Disease Syndrome that results in an autoimmune response to the original illness or residual damage to tissues. ILADS doctors are considered “alternative” because they do not follow standard Center for Disease Control (CDC) protocol for symptoms of Lyme disease that continue after antibiotic treatment whereas IDSA doctors follow CDC recommendations. We examine this particular illness because people who suffer from either an unrecognizable diagnosis or a controversial one, and certainly one that is chronic, can strain the compassionate and empathetic responses of others, especially from doctors who are challenged to cure these patients. We will keep in mind the ethical principles and theories from the American Nurses Association as we learn more about these particular patient journeys for cure, as well as the fate of some of the doctors who had been treating chronic Lyme successfully.
Martignoni, G. et al. (2012)Science Direct. Vol.84, Supplement 2, pages S1-S4. Retrieved from:
Selzer, R. (1994). The language of pain. The Wilson Quarterly. 18(4), 26.
READINGS/ARTICLES FOR DISCUSSION QUESTIONS
Martignoni, G., et al. (2012). Medical Humanities: A Question of Style (Links to an external site.). Science Direct, 84(2),S1-S4.
Peabody, F. W. (1927) The Care of the Patient (Links to an external site.). [PDF, file size 146.66 KB] Journal of American Medical Association, 88, 877-882.
American Nurses Association: Short Definitions of Ethical Principles and Theories. Familiar Words, What do they Mean? (Links to an external site.)(n.d.) [PDF, file size 33 KB] Retrieved from https://www.happynclex.com/wp-content/uploads/2016/04/ANA-ethics-definitions-and-examples.pdf
Boyd, K. (2000). Disease, Illness, Sickness, Health, Healing and Wholeness: Exploring Some Elusive Concepts (Links to an external site.). Medical Humanities, 26, 9-17. Retrieved from http://mh.bmj.com/content/26/1/9.full.
Lickerman, D. (2009, 26 October). When Doctors Don’t Know What’s Wrong (Links to an external site.). In Psychology Today. Retrieved from https://www.psychologytoday.com/blog/happiness-in-world/200910/when-doctors-dont-know-whats-wrong.
Specter, M. (2013, 1 July).
The Lyme Wars (Links to an external site.). In The New Yorker. Retrieved from http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars.
Costa, S. (2015, June 16).
Does Chronic Lyme Disease Exist? (Links to an external site.) In U.S.News. Retrieved from http://health.usnews.com/health-news/patient-advice/articles/2015/06/16/does-chronic-lyme-disease-exist.
Infectious Disease Society of America. (2012, July 17).
Statement for the House Foreign Affairs Committee (Links to an external site.). [PDF, file size 240 KB] Retrieved from http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents/Lyme%20Disease%20Testimony-Global%20Health%20Subcommittee.pdf.
Tan, A. (n.d.) How a Tiny Tick Changed my Life Forever: Lyme Disease (Links to an external site.). Retrieved from https://www.amytan.net/lyme-disease.html.
Hass, R. (2013). The Story About The Body (Links to an external site.) [Blog comment]. [PDF, file size 284 KB] Retrieved from https://genius.com/Robert-hass-a-story-about-the-body-annotated
Belling, C. (n.d.) The Story About the Body (Links to an external site.) [Blog comment]. Retrieved from http://medhum.med.nyu.edu/view/1161.
Selzer, R. (1994).
The Language of Pain (Links to an external site.). The Wilson Quarterly. 18(4), 26. Retrieved from http://vlib.excelsior.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=edsglr&AN=edsgcl.16379488&site=eds-live&scope=site.
Wilson, A. A. (Director & Producer). (2009, June 19). Under Our Skin: The Untold Story About Lyme Disease (Links to an external site.) [Video file, 105 mins]. Retrieved from https://excelsior.kanopystreaming.com/video/under-our-skin.
Etheridge, M. (n.d.) I Run for Life (Links to an external site.) [Video file, 03:54] In YouTube. Retrieved from https://www.youtube.com/watch?v=Y1K5lWiNGmY.