Important Message from ProHealth Founder, Rich Carson

Chronic Illness and The Pain of Being Medically Marginalized

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The medical community has theoretically embraced the importance of the patient-centered experience. Almost every hospital describes their care as compassionate and focused on the needs and expectations of the patient. Part of this shift in thinking (from doctor or hospital-centered to patient-centered) may be the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS).  HCAHPS is a patient survey that is randomly sent out to individuals who have been recently hospitalized at a facility.  The government (CMS) then uses HCAHPS scores when they are contracting with hospitals to establish their Medicare reimbursement rate.

Chronic Illness and The Pain of Being Medically Marginalized

The IOM (Institute of Medicine) defines patient-centered care as “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”

Allowing patients to be fully engaged in their healthcare decisions is a good step. Yet, my previous in-patient stay at a hospital owned by a large for-profit corporation makes me question whether this new mindset is no more than just words on a website.

Many people live with pain inflicted not only by a chronic illness, but also by the healthcare delivery system that ultimately holds the collective wisdom that, when applied, can improve their quality of life.  Systemic failures of hospital systems to live up to those lofty, yet attainable, goals create patients who feel overwhelmingly victimized and fearful that no one will listen to them. There is a good reason for that. They are. Those patients can include people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, Lyme disease, among others.

A pior hospitalization allowed me to experience this first hand, and I remain stunned by the realization that this is how so many people go through the healthcare delivery system and emerge physically and emotionally scarred. I have heard personal stories from those individuals. I have had conversations with them, sat with them in PAINS-KC meetings, and I thought I understood the pain of being medically marginalized.  I worked with many individuals in hospice care for almost two decades who were desperate to be heard, yet their voices were an inaudible whisper, drowned out by the superiority of a health system that didn’t care to listen.

I went into the hospital through the emergency room on a Sunday evening and came out four days later as an individual acutely aware of the top-down corporate failure to create a patient-centered environment of care. I have no illusions that it was just an experience limited to this one hospital or just one physician group. It is easy to preen about the outstanding patient experience, but far more difficult to be the patient who is experiencing the experience.

I was in the hospital for almost a day with no treatment. The ER failed to notify my primary care physician that I was there. The staff could not tell me why I had no orders other than the customary IV.  A phone conversation requesting orders from my physician could have answered that. In desperation, I finally called my physician’s office to be told they didn’t know I was there. They did send a doctor over quickly, and he did discuss his treatment plan. I had never seen him before. He had no way to understand how a simple medical event could seriously impact my well-being. Yet, here he was, tasked with making recommendations that would make me better. It made me wonder about the push to have a primary care provider who knows you and understands your medical history if that history becomes irrelevant during hospitalization. However, I had asked that a specialist who had treated me for ten years and who knew my complicated medical history be consulted in all treatment decisions. My specialist is on staff at that hospital, yet no one contacted him during my stay.

I went to the OR on Wednesday still wearing the gown that was put on me in the ER three days earlier. I had asked for a gown, but it never materialized. I didn’t even have a towel until Tuesday when I asked housekeeping if they could bring one to me. I also asked the OR if they could change my sheets as those had never been changed.  Even though I had a fully anesthetized surgery procedure, no blood work was ever ordered. I was fortunate to be fully ambulatory, so I could get to the bathroom to wash my hands and dry them on my gown. Others are not as fortunate. The remainder of my stay was equally dysfunctional. It was not defined by one flagrant mistake, but by a culmination of individual instances that seem insignificant alone, outside of the context of the entire hospital stay.

I generally make it a policy to not speak negatively about physicians. They are human. Medical care is complicated. I’m not a person who leaves ugly one-star reviews. However, I am a person who believes it is the right and responsibility of every person to advocate for change in systems that marginalize the very people who need its help the most.

I have the tools I need to advocate for myself. I have college degrees and social support. I am financially stable.  I can challenge those who attempt to marginalize me. I can change doctors if I feel that I need a new one. I can afford excellent health insurance. I am a good health historian. Yet, I still shudder at the feelings of worthlessness I experienced at this hospital on this one visit. I realized that every individual can encounter these systemic deficiencies. We can be vulnerable because we are the wrong age, the wrong color, the wrong sex, have the wrong diagnosis, take the wrong medications, or speak the wrong language, come from the wrong socioeconomic background, have too many tattoos, dirty hair, or not enough education.

It is important to acknowledge that these vulnerabilities exist and to advocate for yourself and others so that your story is heard, believed, and respected.

This article was first published on ProHealth.com on April 12, 2018 and was updated on September 30, 2020.

Lesli A. Hill, MS, is the co-founder and CEO of Pain University. In 2014, Lesli had suffered six years of catastrophic complications from a routine surgery, with intense pain being the most frightening part of the overwhelming complications.  Although she kept hoping it would go away, she sensed that this type of pain would stay with her perhaps for the rest of her life, which seemed impossible to imagine. Pain University is her answer.

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