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The Need for Health Care Advocates

The Need for Health Care Advocates

Some mornings, I wake up sad, lost in thoughts about my twin sister, Dana, who has spent the past fifteen years suffering from a rare chronic illness called Cyclic Vomiting Syndrome. I cannot begin to attempt to know what it feels like to live in constant pain, to be powerless and a prisoner to a failing body. On mornings like that, I snap myself out of the sadness, a luxury I have, and remind myself not to take my health and life for granted. I let my sister’s experiences motivate me and fuel my goal of making hospitals and schools safer for all.
Over the years, I have not only watched Dana agonize in pain, but worse, I have also witnessed years of inhumane treatment and care during her many trips to the hospital, mainly the emergency room. For me, it is important and necessary to bring humanity to my work, and I hold others to the same expectations. Thus, when my family takes Dana to the hospital, a place of healing, we are always shocked at the disrespect, disregard, and nonchalance with which the medical professionals treat Dana. I could think of too many specific occasions over the years that demonstrate the inhumanity and bullying that I have seen in the hospital, but I will highlight only the most recent experience my family had.
Starting this past March, my twin sister was in the hospital for three months. It started out with her having high fevers coupled with excruciating pain. My mother, as she always does, drove Dana to the emergency room (ER) where Dana waited for hours, in pain and discomfort, before she was seen. Without taking any tests, the doctors routinely drugged my sister up and sent her home (treating her as they always do since she is always in the ER). They mask her pain with medications instead of proactively figuring out how they can help her have a better quality of life. Within the same week of Dana’s initial visit to the ER, my mother returned two more times, complaining to the doctors that Dana was ill with a relentless fever. Still, the doctors did not listen. They drugged Dana up and sent her home. Dana was not sick like her normal sick; there was something more that ailed her. Knowing this, my mother begged the doctor-on-call to admit Dana into the hospital for further testing and treatment. He ignored my mother’s cries at first, but my mother was persistent. My mother and Dana were at his mercy, and like a god, he had all the power. After watching my mother plea for her daughter’s life, he reluctantly signed the paperwork to admit Dana into the hospital and threw the papers at my mother and sister like they were nothing, washed his hands from them like scum.
From the beginning of Dana’s hospital stay, the doctors could not figure out the origin of Dana’s fevers. They made no haste efforts to alleviate her suffering or to improve her quality of life. They failed to consult with other doctors at research hospitals, were offended when we asked to transfer Dana, and fed us misinformation and lies about the process of transferring patients to other hospitals. Plus, very few doctors worked on the weekends; no labs were open either. As such, we spent weekends on pins and needles, hoping Dana would not succumb to whatever ailed her. Tests after tests, the doctors still had no answers. Each day, Dana grew weaker and sicker while her doctors watched on.
Moreover, there was no consistency in Dana’s care. There was a new doctor in charge of her “case” everyday and, finally, despite the complexity and severity of her condition, they put an advanced practice registered nurse in charge of her care instead of a trained doctor. This lack of consistency, doctor retention, and professionalism was insulting and proved to be a testament to how the health care system values and has valued people of humble means in this country. On top of this, during Dana’s hospital stay, the medical practitioners talked down to us, failed to keep us updated on the tests and treatments they were giving Dana, took their time responding to Dana’s calls for help, and disregarded any of Dana’s request that would improve her quality of life in the hospital. After all, the medical staff knows better. Why would they listen to patients anyway?
My sister’s recent hospital experience confirms my belief in the need for patient advocates, especially for marginalized populations. Whether we want to admit it, bullying happens too often at hospitals where there is a clear power imbalance between patients and doctors, where doctors do not make the time to listen to patients’ request, where medical professionals judge patients and talk down to them, where doctors make decisions about a patient’s body sometimes without consulting them, and the list goes on. There is a need for medical care and communication to be culturally responsive, humane, and violence-free. Doctors, just as other professionals, need to self-reflect and check their cultural archetypes and stereotypes so that their biases do not inadvertently impact the healing work they should be doing. Doctors, whose role it is to preserve and help humanity, especially need to practice kindness and bring humanity to their work.
While Dana is still struggling, we finally found a doctor that decided to stick with her, and we are very grateful to him. However, this happened only after my older sister, a lawyer, and I started to call the hospital everyday. This only happened after we both went to Connecticut, where Dana lives, prodding the medical staff with question after question the same way they prodded Dana with needle after needle. Unfortunately, there are so many people in our nation with chronic diseases who do not have advocates like my sister does. Even despite this, Dana is still often mistreated anyway. How much worse would it be if my family and I were not there to demand better, to ask questions, and to hold medical staff accountable? Imagine how much mistreatment and abuse that so many people who do not have advocates or the wherewithal to advocate for themselves suffer each day when they go seeking help and healing at a hospital.
And, although there are probably caring and amazing doctors out there, that has not been a part of my experience. I could only write and share what I know. Sharing my story is not only an example of medical power-tripping, but also an example of the power of collective action and advocacy. Doctors need to be held accountable, and patients (and their families and friends) should know that they have the right to ask questions, to get answers, and to demand humane treatment at medical facilities. In the end, by exposing my truth, my hope is inspire others to demand humanity in health care and to take a stand against institutional bullying.