When Racial Healthcare Disparities Become Personal: Part Two

“ Inspired by the healing ministry of Jesus Christ, we, Presence Health, a Catholic health system, provide compassionate, holistic care with a spirit of healing and hope in the communities we serve.” – Presence St. Joseph Hospital mission statement

My father awoke on Tuesday, July 7, in excruciating pain and unable to get out of the bed. He could sit up but he could not get his feet out of the bed. In a moment of panic, he sent a group text to me, my son and my brother asking for help to get to a hospital. My brother arrived, assuming he could get our dad in the car and that he would get him to Chicago’s public health hospital where our father’s lack of health insurance would not be a barrier to services. Instead an ambulance was called and despite my dad’s protest that he be taken to the public health hospital, he was routed to the nearest hospital because of the urgency of his situation.

As I would learn when I arrived in Chicago, our father has been living on less than $250 a week in one the nation’s largest cities. Having been laid off a few months earlier, health insurance wasn’t a priority because daily survival was the name of the game as it is for many working class and poor folks. I knew dad’s financial state wasn’t good but even I was shocked at the reality. I knew that despite his age, he had been looking to find work but job-searching at 62 isn’t a picnic.

Despite my dad’s concerns about cost in the emergency room, he was assured that his care and well-being was the only priority. Needless to say that wasn’t quite the reality we would face when it became clear that dad’s issues were more than a simple backache and that my support would turn from sitting bedside with dad and providing comfort to navigating the maze of bias and finances to ensure his well-being. Less than a week later, I would no longer just be my dad’s daughter but would also become his official advocate and agent via a Power of Attorney. I would also become an official pain in the ass to the powers that be at St. Joseph’s Hospital.

I arrived in Chicago a little more than 24 hours after my father was admitted to the hospital. The first hospital official I would meet with would be the pleasant woman from the Financial Counseling office. Her task was to assess my father’s assets, which are none, and determine how we could best get the hospital bill paid for. At this point, my father was on a steady diet of morphine and other aids to keep the pain at bay and no one had a clue what we were were looking at other than a liver mass that showed up on the MRI and extreme back pain that turned my father into a temporary invalid. I assured the financial officer that we would get the paperwork and supporting documents to her within a few days.

Two days after my father was admitted, it was determined that he needed a biopsy and we had a small break in figuring out one possible cause for the back pain. A fracture at the L4 lumbar vertebra. In less than 24 hours, a biopsy and an ultrasound were performed on his liver as well as a spinal procedure to fuse the spine back again. It was explained that after the spinal procedure, he might possibly need rehab services considering the state that he was in. It was after this that our hospital experience started to turn downright surreal and hostile.

The impact of the meds and procedures had started to weaken my dad even further, yet less than six hours after the spinal procedure, a resident came in to inform us that dad should be released within 24 hours despite the fact that my father couldn’t walk and couldn’t even use the bedpan without assistance. I expressed my concerns and was told that his bed costs $5000 to $6000 a night and since he had no insurance it would be better for him to go home and recuperate. Mind you, my father had been living in a rooming house for single men and there was no way to get support services in that space.  We knew my dad was not going to return to the rooming house and would be moving in with my cousin but my cousin who works full time and lives in a third-floor walkup was not going to be able to take care of him. Dad couldn’t return home until he was able to perform the majority of daily activities with minimal assistance.

For 48 hours, I went back and forth with his medical team until it reached the point that in desperation, I would take to Twitter to start tweeting the hospital’s parent company which in the end did start to move things. Less than 24 hours after I had taken to social media in a last ditch attempt to not have my dad dumped on the street, I met with the hospital’s medical director and the director for the residency program.

Eventually we would come to some consensus over my dad’s care and aftercare but not after having been told that dad could access rehab services in house only to have the hospital’s physiatrist renege on that offer soon thereafter and refuse to even meet with me afterwards to explain his reasoning.

In the end, my dad was released a week after he was admitted and sent to a skilled nursing facility that offers physical therapy two to three times a week rather than the daily rehab that the hospital’s own physical therapist had suggested. It was also clear that my dad’s dire financial status and background including the fact that he had been brought in from a rooming house affected the treatment he received by some of his team, specifically the residents.

People have back stories and they are more than the sum of their current reality. We live in a culture that worships at the altar of youth, none of us are really ever “old” and the majority of us expect to live very long lives. The reality though is that for many at the lower rungs of the socioeconomic ladder, they grow old far too early. For people born and raised into poverty like my father, which was compounded by the harsh laws of Jim Crow, childhood was no respite from harsh realities and life never really did get much better.

Those whose lives are spent dangling in the land between poor and working class often enter mid-life with bodies that have endured too much. Bodies that have never had consistent, proper care. Bodies that have worked too hard at jobs that demanded too much and paid too little. Bodies that often took the quickest pleasures they could which often times backfired in the long run.

My father is a man whose life has been a journey, sometimes he made missteps and the loss of my mother 11 years earlier has affected him far greater than we wanted to admit.  Yet despite the choices that he made, he was determined to create something better for his kids and grandkids. Watching physicians mistreat him because he appears on paper and appearance to be just another bum broke me. To watch him gasping for breath asking to speak and having doctors ignore him while his surly white roommate whose wife had been on the hospital’s board of directors received humane and kind treatment brought home to me just how racial and class disparities play out in our country. Often unseen and rarely acknowledged but with real consequences. The data that is known supports this yet too often we pretend that is is not real.

I am working through my anger, and the realities of this new life which means I will need to return to Chicago often to monitor my dad’s well being. The impact will be felt in all areas of my life and now my own future plans are on hold. As for my dad, he is making progress at the nursing home and eager to get out.

Lastly, thank you. Many of you have reached out with kind words and support which has mattered more than you can ever know. Thank you.
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5 thoughts on “When Racial Healthcare Disparities Become Personal: Part Two”

  1. I’m so sorry that your dad was maltreated and ignored by people from the ambulance driver to the hospital staff. It’s their job to provide care for people who need it without regard for their own perceptions and biases. We trust them to do the best job they can, and they failed you and your dad. As much as you hear about patients coming first and most non-profits emphasize how much charity care they provide or write off at the end of the fiscal year, it really is about the bottom line for healthcare providers. Sad that you had to call them out in public before they’d even pretend to listen, I had to do that myself with a local healthcare franchise that was playing hardball and threatening to garnish my wages after my son was hospitalized. They got back to me but I still had to take out a loan from their affiliated bank (WOW how convenient) to pay for what insurance didn’t cover because they did not accept payments under $300 a month otherwise. It’s disgusting. I hope your dad is able to get the care he needs and recover and can stop being treated like a lost cause by his healthcare providers.

  2. This makes me so sad. I’m glad he has you; so many people don’t. But he should not need you. The system should be equitable for all.

  3. At age 62, another component emerging here is ageism. Even if your father had had Medicare insurance this would not have protected him from the slurs and inattention that he received from the residents at this hospital. Even today no American medical school unlike European ones requires its students to take a geriatric clinical and it shows in our current medical climate. Very relevant ….in my Baltimore days…. I on occasion rode the staff van between several of Johns Hopkins medical sites. The Geriatric residents by and large were in that field because it was far easier to get into rather than that specialty that they would have actually preferred ! And regardless of the “Catholic nature” of Presence Health, it too is concern with its bottom line. Please line up those advocates in the Chicago area of aging that can aid you in your advocacy for your father. His current nursing home has a social service person, this should be one of them.

    • Just to clarify that unlike the White person … the Black person in the United States is faced with the reality of both the racism as dominant throughout his/ her lifespan and upon aging— the dual whammy of not only being black but now black and old !

  4. I am thinking of you and your family. During your care, concern and advocacy of your dad, please take care of yourself when you can.

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