By Clarissa Pearson
I was diagnosed with Sickle Cell at 3 months of age. After all of the close calls and near death experiences I’m still here; and with prayer and good medical treatment I hope to be here for many years. Living with a chronic illness is a daily struggle, especially when you have an illness that many people, including medical professionals are not well not informed about the signs, symptoms and treatment. This is the case with Sickle Cell Anemia.
I thought I had dealt with everything that one person had to go through, until the day I made the decision to express my concerns about my doctor care. As a patient, I believed I have the right to express my concerns and dissatisfaction with a physician and/or treatment of my care. As a patient, I believe I have the right to request another physician if not satisfied with the care I am receiving while in the hospital.
Well, apparently what I believed was my right, was totally wrong, at least at one area hospital in Northern Virginia. When I wrote a letter to my doctor expressing my concerns about my care and treatment, it sent off a tidal wave of retaliation from hospital staff, which is incomprehensible on any level of patient doctor care.
It began one Friday evening when I went to the emergency room for a Sickle Cell Crisis. Almost all patients with sickle cell anemia have painful episodes (called crises), which can last from hours to days. These crises can cause pain in the bones of the back, the long bones, and the chest.
Some patients have an episode every few years. Others have many episodes a year; many sickle cell patients, like me, have crises often and severe enough to require a hospital stay.
When I first arrive at the emergency room, everything was routine. Then it was time for me to be admitted. The physician on duty asked who my primary care doctor was. I explained to him I was not happy with the physician who had been treating me and had written her about the dissatisfaction with my care and my preference to see another doctor at the hospital.
He seemed to understand. On the way to x-ray I over heard him tell another physician that I had ‘fired’ my current doctor. He responded by saying, “Oh I didn’t’ think that we could get fired.” I had not said this at all!
After that, I spent my entire stay at the hospital trying to get proper care. I was ignored and left to wait for long periods of time for medication while in excruciating pain. I was ignored and treated like someone who had been ‘blackballed’ because of my complaint.
I have been in and out of hospitals my whole life; both of my parents work in the medical profession, so I well understand that situations beyond control of hospital staff often cause delays for patients needing care. This was different. I called my father crying because I couldn’t understand why no one would provide me with help or the medical care I needed? He was going to follow up with phone calls then jump on the next plane from New Mexico to Northern Virginia to help.
When another doctor on call finally came to see me, he again made comments about being ‘fired’ if he didn’t do something right. This was unbelievable! I could not believe physicians could be so insensitive and petty!
I asked to see the “new” doctor assigned my care. When he came into my hospital room; he didn’t ask how I was feeling, instead he reprimanded me for asking to see him when other patients needed his service more. He also asked why I hadn’t gone to another hospital for a second opinion AND then told me, the doctor I had the issue with was still my current physician and that she could not be fired! I was speechless and in shock!
Was this not a violation to be treated this way? Is this what hospital care has come to? Should patients be fearful of expressing concerns about their care and just remain silent?
I wrote a letter to the hospital detailing my experience and they responded that their investigation showed my rights were not violated.
My first question is how can a hospital conduct an investigation when the person who filed the complaint wasn’t contacted about the details?
My former doctor eventually sent me a letter relinquishing my care. To add insult to injury she wrote that “the hospital would still provide care to me for 30 days in case of emergencies.” I felt like I was being ‘punked’ this could not be happening to me!
I have written several letters and have not received any calls about why I think the actions of the doctor and staff were a violation of my rights.
The American Medical Association (AMA) outlines fundamental elements of the doctor-patient relationship in their Code of Medical Ethics. These rights include the following:
- The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives
- The right to make decisions regarding the health care that is recommended by the physician
- The right to courtesy, respect, dignity, responsiveness, and timely attention to health needs
- The right to confidentiality
- The right to continuity of health care
- The basic right to have adequate health care
I have written the U.S. Department of Health and Human Services. Other recommendations listed on the American Medical Associations website include the following:
“Other avenues for addressing complaints include the state medical society or licensing board. These organizations have appropriate investigative bodies at the local level that can review physicians’ conduct. If appropriate, the licensing board can take disciplinary action against a physician’s license to practice medicine. Contact information of the licensing boards in all 50 states.”
Quote from the American Medical Association website.
Has anyone else had this happen, if so I would really like to hear what you did and if anything was resolved. Being sick is bad enough, everyone deserve the right to be treated fairly when in the hospital.
Thank you so much for your response. Sometimes, I don’t understand why it is always so hard to get decent treatment. Especially, when we may frequent the same hospital more than once. What I learned, is that if we put our life in someone else’s hands , then we should be able to chose our own doctor, without it always being so messy.
I would love to continue this conversation, please visit this website heartogold.org or email firstname.lastname@example.org
Thank you so much for sharing your story.
Wow, I’m speechless, I done had my experience with the hospital and some doctors. I have SCD, I change primary doctors over spring because I didnt like the one I had. He had a problem with faxing everything the new doctor need’ed before he could actually see me,I call and the new doctor had his nurse call and still no papers fax. I was in hospital she had the nerve to call me and say are you changing doctors, I said umm yes. I bn trying to get in touch with you all over a week. She had attitude because I was leaving from under her husband care and going with a new doctor. I believe if I have to go in hospital and they ask who my primary doctor is and they never heard of him and im stuck with any doctor that I don’t know. Its truly time to get a new doctor that I can count on. I must say I love the one I have, even when his off, his not off. But at one point I was going to er a lot, and they had the nerve to tell me sickle cell patients dont come this often, I look at them… umm you mean I dont come in that often. I was in hospital every month last year around this time. I usually have one or two crisis a year or sometime none. Lets just say I can feel your pain, I don’t want my comment to look like a book. I ‘m sorry to hear you got treated like that and hope it gets handle real soon. God Bless 🙂