Though I am a medical student and want to work in medicine, I have long struggled to trust physicians, and more broadly, U.S. healthcare. Throughout my life, there has been a lack of representation, or providers who look like me and understand me, and I’ve dealt with my share of discrimination and bias in healthcare. All of this has added up to significant barriers to care when I have needed it.
The first time that I can remember experiencing bias related to my treatment was in 2012. That spring, I’d ruptured my Achilles tendon, and I had to drive myself to the Chandler Regional Medical Center in Chandler, AZ. I was seen in the Emergency Department by a Physician Assistant. He did the Thompson Test and promptly diagnosed me with a complete rupture of my Achilles. Though I was obviously in pain, he didn’t so much as address my pain, even after I asked if he could prescribe something for me to get through the weekend. Instead, he told me that I needed to see an orthopedic surgeon and he sent me on my way. No crutches, no boot, nothing for pain. I had to limp back to my truck, and I drove myself home.
Later that year, I had the surgery to repair my tendon. From the moment that Eboni and I walked into the outpatient surgery center, it seemed that the staff was more concerned about collecting my deductible payment. After about an hour, Eboni and I were led back to the surgical waiting area. Both of us were very nervous and had questions for the surgeon and anesthesiologist; the surgeon came in and explained that the procedure would only take 45 minutes to an hour, but the anesthesiologist never came in to explain things. At one point, a nurse came in and marked my right leg for surgery, and I told her that the surgery should be on my left leg. Instead of listening to me, she left the room in a huff but returned after about 30 minutes to mark the correct leg. She barely made eye contact with me as she turned to leave.
I was wheeled into surgery around 2:00 PM that day and I remember waking up in recovery around 5:45 PM. At no point did anyone go to the waiting area to let Eboni know that the surgery had been a complicated one and that I’d almost died on the table. In fact, no one told me either. The surgeon came into the recovery room and said that he’d run into a little “snafu” with repairing my tendon, but that was it. It wasn’t until a few years later, when I obtained my medical records, that I discovered that I’d had a bad reaction to the anesthesia and my heart rate plummeted. They spent several hours trying to stabilize my heart. Oh, I forgot to mention that I was sent home from the surgery with no pain control. In any case, to this day, I have been deathly afraid of going in for my colonoscopy because of my fear of anesthesia and being put to sleep.
In 2914 – ’15, as my mother-in-law was fighting for her life in the Scottsdale Honor Health ICU, little did Eboni and I know that Pam was living out her last days. Pam had been ill for some time and over the course of that year, she’d lost probably 40 or 50 pounds. That year was a blur of doctors’ visits and hospital stays until that final stay at Honor Health. We never did get an exact diagnosis for what ailed Pam; one doctor told us that she had systemic vasculitis and that if the infectious disease doctors could ever clear her C. diff infection, they could start a powerful chemotherapeutic that would likely save her life. Based on this information, Eboni and I decided to keep fighting. We couldn’t ask Pam what she wanted because she was in an induced coma.
Day after day for several months on end, Eboni and I traded shifts at the hospital. I would stay during the day when Eboni was at work, and then she would come to relieve me so that I could go to work and write on my master’s thesis. Day after day, the nurses and doctors would tell us that, despite what we could see, Pam was getting better. There came a time when Eboni asked me, “Daryl, do you think that momma is ever going to leave here alive?” I honestly had this growing doubt that the clinical team wasn’t telling us everything, so I told Eboni that we were going to request a conference with the team that day. When we met, I asked. The question, point blank, “Is there any chance that Pam is going to live?” One of the doctors, a female, I can’t remember her name now, spoke up and said, “No. Your mother’s chances of coming out of her condition alive are slim to none.” I don’t think that Eboni caught any of the next 30 minutes of the conversation, but at the end of it, it was decided to wake Pam up so that we could ask her what she wanted.
After Pam was awake, we asked her want she wanted but she refused to speak to us and wouldn’t look at us. We asked her several more times if she wanted to continue treatment or stop. She looked at Eboni and said, “Bitch! I want to go home!” There was so much fire and anger in her eyes and she repeated this repeatedly that night as we sat at the hospital that night with Pam. As you might imagine, Eboni was very distraught and thought that her mother hated her, In actuality, Pam was undergoing delirium from having been in that induced coma for three weeks or so and was communicating in the only way that she knew how. After a few days, we arranged for transport to the Hospice of The Valley and Pam and Eboni were able to strengthen their bonds in the final two days of Pam’s life. When she went to be with God, she left this existence with a smile on her face.
Eboni has always blamed herself for holding on to her mother too long, but the truth is that our decisions were made based on the communication, or lack of honest communications, that we had with Pam’s care team. Since that time, the trust that we had in the healthcare system was destroyed. Between the lack of communication, the implicit bias that we’ve dealt with, the judgement (recently, as I was preparing for my cornea transplant, one of the doctors that I saw questioned how I knew that I have Keratoconus…) regarding our knowledge, and the lack of compassion, neither of us has wanted anything to do with healthcare in the U.S. Odd considering that I want to be a physician and Eboni educates medical students.
Well, God works in strange ways. The cornea transplant that I had on the 27th of April, or more accurately, the care that I received has gone a long way towards healing the fractured relationship between us and the healthcare system. On the day of the surgery, Eboni and I were petrified, particularly concerning the anesthesia. The surgical nurse who took us to the back could sense it so she asked the anesthesiologist to come speak to me and explain what I could expect. He did so very carefully and in laymen’s terms so that Eboni could understand. The surgeon came in and explained in detail what his part of the operation was going to be and the surgical nurse promised to call Eboni if anything came up during the surgery that would extend it. After Eboni went back to the front waiting area, the nurse took my hand, prayed with me, and then she sat there and talked to me for the next 30 minutes or so (I was the last case of the day). I went into the surgery a lot more calm that I arrived at the surgical center.
I was under conscious sedation so that I could follow the commands of the surgeon. At one point, I started to feel claustrophobic because I had a surgical mask on and then on top of that, there was a sterile drape that adhered to my face (My claustrophobia developed while I was in the Army. That is a story for another day…) My heart rate started to go up and I felt like I wanted to burst out of my skin. The anesthesiologist asked if I was in any pain and I told him that I was feeling a bit claustrophobic with all of the layers of stuff on my face. The surgeon stopped what he was doing and asked the nurse to tent the sterile field so that it wouldn’t be on my face. This made him have to adjust his technique somewhat and the surgery was extended by 20 or so additional minutes, but I appreciated him considering my feelings and his and his teams efforts to make me comfortable.
After the surgery, when I was recovering, the recovery nurse did what my previous recovery nurse from my Achilles tendon surgery didn’t do: She gave me something for nausea. If you’ve ever come out of anesthesia, you know that you are very nauseous, and vomiting is a real risk. When I had the Achilles surgery, I didn’t get anything for nausea, and I ended up vomiting all over my truck as Eboni drove me home. My recovery nurse took her time in explaining to Eboni and I what I needed to do that first night after the surgery and she offered us both some water. Later, she wheeled me out to the truck and wished us a good evening.
Some of you who are reading this may be saying, “So what? What’s the big deal? The team did what they were supposed to do.” That is the big deal however. For so many people, but particularly for people of color and females, we are used to being unheard, unseen, and judged by the healthcare system and our providers. For many, this has terrible consequences as they avoid seeing doctors, NPs, and PAs when they need to because they expect that they will be treated poorly. This was certainly the case with Pam and as I mentioned above, its one reason why I haven’t scheduled my colonoscopy. However, my experience with the team who performed my cornea transplant went a long way towards restoring the faith that I need to have to not only work in this system but to also receive care from this system when I need it. Always listen to your patient and don’t judge them. When your patients have needs, try to meet them. And if you can’t do anything else, just display some compassion and honesty. Believe me when I say, that will go a long way towards building and keeping the trust of your patients.
