Patients should be given the information they need to understand their treatment.
By Casey O’Brien , R ewire.News Published July 17, 2019
My head was spinning. The nurse speaking to me sounded far away; I tried to ask her questions, but my head was heavy and clouded. I took the pills she handed me. Later, when the morphine subsided and I could think clearly again, I found myself wondering why I had.
My recent visit to the emergency department of my local hospital wasn’t how I expected to spend my day, but my experience there wasn’t just unpleasant. I was treated and given medication in the emergency room without my enthusiastic and informed consent — and shockingly, my provider hadn’t broken the law by doing so.
I was sent to the ER after waking up with blinding pain in my lower abdomen on my right side. Concerned about appendicitis, my primary care provider shipped me off to the emergency department for a CT scan.
When I arrived, a nurse gave me a waiver I could barely read through the pain. “Just a consent to treat,” he said. I signed, desperate to get treatment and get home.
After a dose of morphine, the tests began. My provider was a young physician’s assistant who seemed to be responsible for almost every bed in the ER that hadn’t been deemed “critical condition,” mine included. Despite her busy caseload, I trusted her, which I would end up regretting.
After my CT scan came back negative for appendicitis, the provider suggested a pelvic exam to look for signs of infection. My mother stepped out of the room to give me some privacy, which meant I was alone for the conversation that would follow.
Although I told the PA that I had essentially zero risk for sexually transmitted infections (STIs), having had the same monogamous partner for years, she was insistent that STI testing was standard protocol.
“We should run the test for gonorrhea anyway. We usually do: It’s just policy for this type of pain in sexually active people of childbearing age,” she said.
Softened by morphine and exhaustion, I agreed — what was the harm in a test, after all?
My provider returned a few minutes later and told me she thought I had a urinary tract infection and would prescribe antibiotics, then quickly left to tend to another patient. The efficient, sympathetic nurse who had been caring for me went with her.
“I am going on lunch, sweets. But there’s another nurse that will be in soon,” she said. “Feel better.”
When a second nurse appeared a few minutes later, my mother was still in the cafeteria, drinking coffee from a Styrofoam cup and wondering when she would be allowed back in.
“I have your meds,” the new nurse said curtly, by way of introduction.
“Meds, plural?” I asked.
“Two different antibiotics. They will both treat the infection. Go ahead and take those now.”
I shrugged, still dazed from pain medication, and gulped down the pills. My mother appeared by my bedside just a moment later and introduced herself to the nurse.
“What meds is she taking there?” my mother asked.
“Well, we’ve got two here. One for the UTI, and the other is a treatment for gonorrhea.”
I sat up straighter. “You said they were both for my infection.”
“Well, they can both treat a UTI. But technically, one is a gonorrhea treatment. We won’t get the results of the gonorrhea tests for 48 hours, so we can’t send you home without treating for it. It’s a public health issue,” she said, unapologetic.
My mother managed to flag the PA, who returned to explain that because some STIs like gonorrhea can spread so fast through a community, they have to be treated automatically upon testing — but I didn’t have one.
I have compromised immunity and a reactive system, meaning I should avoid extra antibiotics. Still, I was given strong and unnecessary ones while my medical allies were away from my bedside and I was on morphine. The medication I was given was to treat a disease I didn’t have — because, indeed, my gonorrhea tests came back negative — which I was tested for despite my insistence that I was not at risk. I live in fear of someday not being able to use antibiotics when I really need them.
I felt duped and completely disrespected. I could have refused the treatment were I informed, but I wasn’t given a real option to make a decision.
Surely, this would be considered malpractice, I thought. So I began researching the law and speaking to experts in the field. What I found was shocking: What happened to me was perfectly legal, even if it was in somewhat bad form.
The main reason was that waiver I barely remembered signing. I spoke to Rocco Orlando, the chief medical officer for the Connecticut-based Hartford Healthcare about the issue.
“There’s two levels of consent for the usual emergency department visit. One is when you come in: There is a general consent to treatment. That is a fairly detailed, lengthy, fine-print document that also — in our hospital and in most — includes consent to treat, insurance authorization, the ability to communicate billing information. All of that is in a single document,” he explained.
That document might be signed after an initial screening, but it is usually given to all conscious patients before any treatment, unless the situation is so dire it requires immediate care (such as life-threatening injuries). If they’re anything like I was, they are probably uncomfortable at best and in extreme pain at worst — so they may sign it without reading too carefully.
That’s unfortunate, since many patients won’t see the second consent form, which would be given if the condition that brought a patient to the ER requires admission to the main hospital, surgery, or anesthesia. But short of that — including distribution of medication — everything is covered in that “detailed, lengthy, fine-print” consent to treat form.
Although I reached out to the media contact of the hospital where I was seen to learn more about the specific consent form I signed, they never responded. Its website, however, states, “You have the right to make decisions regarding medical care and receive as much information about any proposed treatment or procedure based on identified health care needs, as you may need in order to give informed consent or to refuse a course of treatment.”
In my opinion — and those of the medical experts I spoke to — in order to follow those guidelines, my nurse should have explained the medications she was giving me and given me a chance to refuse them, and my primary care provider should have consulted with me before prescribing medication.
Since that didn’t happen, according to Orlando, I could file a written complaint about that, which the hospital would be legally required to respond to in ten days or less. But “response,” he said, could range from simply apologizing to a patient to changing training practices to legal recourse — the requirements for response vary depending on the severity of the complaint.
I asked Orlando what patients should do to make sure that their rights are respected in the emergency room, so others wouldn’t end up in my situation. He suggested ensuring that you know as much as possible about your medical history, your allergies and your needs, and bringing a representative with you who can speak for you if you feel you can’t give consent. “We usually respect that, especially if it is next-of-kin or a close relative,” he said.
Of course, you should read the consent form if you are sent to the emergency room, but to get treatment, you will probably have to sign it. Once you do, you’ll have to be your own advocate — or have someone do it for you. And that’s where Orlando says being aware is incredibly important.
“I always tell people, ask a lot of questions about the care. You can ask whatever you need to know, and people should explain that,” he said.
I wasn’t able to ask the right questions about my treatment. The result was an unnecessary medical intervention in which my autonomy was undermined. I am a well-educated, white, fairly well-resourced, and insured person who brought an advocate with her. How would someone with even less agency manage?
It is well-established in medical research, for example, that patients of color have worse outcomes in the emergency room and beyond. And a recent study found that 7 percent of cognitively intact elderly emergency room patients reported that they had been mistreated physically or psychologically — and those are just the ones capable of reporting.
ER nurse Diane Gulden, who works in Victorville, California, emphasized the importance of making sure that marginalized patients are respected and given the opportunity to make decisions. She tries hard to make sure to explain things in accessible language. “The patients I deal with are often elderly and easily confused. When explaining a procedure, disease process, medication…I really like to have a family member present whenever possible. I try not to overwhelm people with information and always provide printed materials that they can refer back to. When educating patients, I try to concentrate on the most likely problem areas, potential for interactions, and the like,” she said.
Two weeks after my incident, I received a bill. That single day in the ER cost $18,000. My insurance was paying for $17,000, leaving me with the rest. The portion it deemed not medically necessary? The STI testing and treatment.
So now I have a new fight on my hands: An ER tested me despite my insistence I didn’t need it, gave me a treatment I didn’t want or ask for, and is asking me to pay $1,000.
When patients are conscious and able to participate in the conversation, they should be given the information they need to understand their treatment. Whatever paper gets signed.
Truthout publishes the most pressing news of the day from an independent perspective – free from political influence, advertising pressures, and billionaire control.
We’re able to traverse complex problems and dig deeper than the mainstream because of reader support. Your donation keeps our nonprofit newsroom online.
If you found value in the piece you read today, please consider a tax-deductible donation to Truthout. Right now, we’re looking to find 100 new monthly donors in the next 2 days. Will you help us get there by starting a monthly gift of a few dollars? (Or, a one-time donation of any size).
