Finding the Best Fit in Health Care — The Empowered Patient
By Casey Hersch, MSW, LCSW
I never imagined being fired from a physician. It seemed like the last worry I should ever have. After all I was already managing the anxiety of the diagnosis of an autoimmune disorder: Crohn's disease. I was critically ill and I did what I thought I should do—seek expert opinion. I went to see physicians specializing in gastroenterology. The first physician told me the only treatment available was surgery and immunosuppressant drugs. When I said, "I have researched Crohn's disease and I see some people benefitting from dietary changes," she said, "Diet will have no impact on your incurable condition." I inquired further; after all, as a social worker, I was accustomed to consumers asking questions and exploring options to help them find solutions that were self-congruent. "What about fish oil?" I said. The physician replied, "If you choose to challenge my knowledge and not follow my recommendations, then I suggest you not come back."
As I awaited my next office visit with a physician, I told myself I was seeing a new specialist, and it would be different. As I reported my concerns the physician looked at me and said, "Casey, your condition is never going to get better. It is not a matter of 'if' but 'when' you will have parts of your intestines removed. You have a progressively worsening disease—there is no cure." I pleaded with the physician to view me as an individual and to hear me as I tried to express what I knew and believed about my body. He said, "Casey, if you have one infection you have multiple. There is no reason to have this conversation—you are not any different."
Most of us have been recipients of bad news from a physician. According to Douglas Kerr, MD, PhD, the prevalence of autoimmune diseases such as lupus, multiple sclerosis, and type 1 diabetes is on the rise. "In some cases, autoimmune diseases are three times more common now than they were several decades ago ... [the] numbers are staggering" (Kerr, 2007). Autoimmune diseases are surpassing coronary heart disease and cancer with 1 in 12 Americans developing autoimmune disorders (Kerr). Consumers need physician support more than ever, yet there are some barriers to receiving this support: We often take what our physicians say at face value—after all, they are the health experts. We assume that they must know how to heal us better than we do. However, exchanges with health care teams are sometimes one-dimensional. The consumer listens and is expected to translate and apply the information—even if it is not what is synergistic.
The more empowered consumers feel over their medical conditions, the more healing is fostered, because individuals are more likely to comply with recommended treatments (Hannon, 2018). However, consumers need encouragement and ways to navigate the complexities involved in their interactions with health care providers. Consumers may not realize how vulnerable they are as they rely on expert opinion. They can overlook the importance of ensuring their voices are heard and fail to prioritize the inclusion of their opinions and beliefs about their illness in conversations with their physicians. This is a disadvantage because it limits full access to healing potential.
I am a licensed clinical social worker interested in the integration of social work, medical models, consumer care, and empowerment. My personal experience with autoimmune disease has resulted in numerous exchanges with physicians. This, coupled with my professional background, deepens my interest in the communication exchanges that occur between consumers and their health care teams. These either can be empowering—fostering hope—or can work against individuals' healing—leaving them in chaos, dread, and a worsening of symptoms. As social workers, we embody the NASW Code of Ethics: self-determination, advocacy, honoring cultural awareness and social diversity. We are in a unique position to model and teach these values to our consumers—this is critical in order for them to have exchanges with their physicians that value the individuals' beliefs and perspectives about illness and to further their healing.
Psychiatrist and professor of medical anthropology and cross-cultural psychiatry at Harvard University, Arthur Kleinman, MD, proposed that people can have vastly different interpretations of health and disease. He says that diseases are what physicians are trained to understand and treat, while consumers have their own personal lens through which they view their symptoms/illness (Kleinman, 1988). To bridge this gap, Kleinman introduced the concept of the explanatory model. He proposed that questions directed toward consumers should go beyond "Where does it hurt," and incorporate questions such as the following:
• Why did the illness start?
• How did it start?
• What do you think caused your problem?
• What do you fear most about the illness?
• What does illness do to your body?
• What is the source of improvements and exacerbations?
It is beneficial for social workers to explore these questions with their consumers. As consumers begin to consider their interpretations and answers to these questions, they begin to concretize their own beliefs about healing and what they believe they need to heal. The more consumers consider these questions, the more empowered they become to have such conversations with their physicians—even if this is not the standard for communication in the traditional medical model. As consumers access their own intuition about what they need to heal, they open the door to treatment solutions that were not considered by their health care team.
Integration of the Consumer Lens
The explanatory model would have provided a more complete picture of my illness and insights for my health care team to consider during my treatment.
Why did the illness start? I grew up in a home with domestic violence and experienced much trauma. I always wondered if my gut problems had something to do with how anxious I was.
How did it start? After I had taken hundreds of antibiotics there came a time when my body said it had enough, and I was no longer able to get out of bed or go to school.
What do you fear most about the illness? That I will need surgery. During an outpatient diagnostic procedure my iliac vein was cut in three places, resulting in me almost dying and losing feeling in my legs for a period of time. The mere thought of entering a hospital for surgery makes me feel panic.
What is the source of improvement or exacerbations of the illness? When I eat sugar or pizza, I get sick, and when I use holistic approaches my body feels healthier and stronger.
The responses reveal information that has been critical to an integrative and meaningful treatment plan.
• The connection between trauma and symptoms suggests a benefit for psychotherapy and approaches that further connection to bodily sensations to reduce anxiety.
• The negative experience with antibiotics reveals a benefit to suggesting alternatives to prescriptions and explains the aversion to them. Hypersensitivity when suggesting prescriptions should be considered.
• The suggestion of surgery triggered posttraumatic stress associated with a past surgery trauma. Addressing this trauma in psychotherapy would be beneficial.
• Consumer observations regarding improvement as a result of diet suggest a value for alternative/holistic medicine that is congruent with beliefs and values. This leads to improved compliance with treatment if these can be incorporated into treatment.
Medical models are heavily research and outcome oriented. Similarly, in social work there is ongoing emphasis on evidence-based treatments driving consumer care. However, this emphasis often devalues the importance of relationship in treatment. Davidson and Chan (2014) describe "common factors" as being the relationship components between a service provider and consumer. Common factors include instillation of hope, empathic nonjudgmental listening, acceptance and understanding, and the provision of information along with the support and encouragement to use it. Common factors have been found to account for more in the variance of treatment outcomes than the specific evidence-based techniques. Therefore, emphasis should be on developing these common factors in order to further consumer outcomes in treatment in conjunction with medical models (Davidson & Chan). Kleinman's explanatory model proposes the use of questions that encourage consumer input and promotes a collaborative relationship, ultimately nurturing these common factors.
Consumers as Expert
Consumers are often more vulnerable during a health care crisis. The idea of "firing" a physician can cause much cognitive dissonance, as they question their own expertise regarding their health. Consumers may be willing to sacrifice their own gut instincts to continue seeing a physician who is "the best in the field." The emotional consequences of this sacrifice should be considered carefully. Social workers can model how to strike a balance. For example, social workers often recommend to consumers that they have a few sessions with their therapists to explore whether the relationship is a "good fit." Dialogue about finding the best therapeutic match is encouraged and support is offered to find a better fit if consumers decide there is not a connection with their therapist. This same standard should be encouraged in all facets of their health care. Modeling this approach with consumers can help them comfortably translate this to their expectations of physicians.
As social workers, our role is to empower our consumers to have a voice in their treatment. The more we honor our consumers' strengths and their expertise, the better able they are to be a collaborative partner within their health care team. When consumers value and can articulate their unique perspectives as a vital aspect of treatment, they ensure a holistic treatment approach that promotes healing.
— Casey Hersch, MSW, LCSW, is a licensed clinical social worker and author. She has spent her lifetime broadening her understanding of the many layers of autoimmune disease through researching and experiencing diverse healing modalities.
Davidson, L., & Chan, K. S. (2014). Common factors: Evidence-based practice and recovery. Psychiatric Services, 65(5).
Kerr, D. (2007). Forward to the autoimmune epidemic. In Nakazawa, D. J., The autoimmune epidemic. Retrieved from https://donnajacksonnakazawa.com/the-autoimmune-epidemic-excerpt/.
Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. United States: Basic Books.
Hannon, P. (2018). Are you listening? Stanford Medicine, Spring 2018. Retrieved from https://stanmed.stanford.edu/listening/modern-medicine-challenges-the-bonds-between-doctors-and-patients.html.