I just got off the phone with a good friend who’s been struggling with some medical issues. I heard the defeat in her voice right away when I asked how she’d been doing.
Susan mentioned that she’d seen her gastroenterologist the previous week. “Dr. Snark was irritated with me.”
I’d heard this before about Dr. Snark and not just from Susan. But now she was more vulnerable, less able to shake it off. She’d had gastrointestinal problems for the last year and hadn’t been feeling well. Plus, she’d been given some potentially frightening news about plaque in her arteries. In her mid seventies and a widow, she didn’t need a doctor to disrespect her.
The phone to my ear, I said, “What do you mean he was irritated? What happened?”
“I was describing my symptoms and he cut me off and told me to stick to the point. And not in a nice way either. He was obviously very irritated.”
“That’s not okay,” I said, picturing Dr. Snark, the head of gastroenterology at a teaching hospital, treating Susan like that. I’d encountered his unpleasant manner myself once.
Susan continued. “He also said I had so many things wrong with me, so many medical issues to deal with.” She sighed. “It just made me feel bad.”
“Must have made you feel kind of like giving up,” I said. “If your own doctor can’t handle your medical issues, who can?”
“Yes, exactly,” she said, waking up. Just being validated made her feel like less of a source of dissatisfaction to her doctor. “That’s exactly how I felt. I came home and I guess I’ve been here ever since.”
Some doctors just don’t realize the effect they have on patients. You can make all the excuses you want about them being pressed for time, how healthcare hasn’t been kind to most doctors in the last few years, how non-compliant patients feed their frustration, and more. But there’s no excuse for a patient leaving a doctor’s office with her hope in the palm of her hands.
Recently, Susan had been told that plaque in her arteries was causing her leg pain. Susan is astute enough to know that blockages can cause heart attacks and strokes. She’d begun a fairly rigorous walking regime, which her internist advised her to do in effort to avert major surgery. According to Susan, her internist had said that walking might help to get the blood moving in her legs.
But that news had caused her to feel more vulnerable, old. She didn’t need a gastroenterologist to make her feel worse.
“Did you say anything to Dr. Snark? “
Feeling protective of my friend, I wanted to hear that she told him to F*off. Part of my anger, I’m sure, was due to having been in a similar position with a couple of arrogant doctors four years ago. I’d had severe, chronic, lower abdominal pain for 16 months and saw 11 physicians in effort to get an accurate diagnosis and treatment plan.
Most of the physicians I saw tried their best and sincerely wanted to help me. But two doctors didn’t and wrote me off as a difficult patient. 10 misdiagnoses later, I found my own diagnosis in a New York Times article and the surgeon and hernia specialist to heal me. She did the appropriate tests, performed three-hour surgery to repair the muscle tear at my C-section site that had nerves pinched in the holes and an inguinal hernia with nerve involvement as well. Thanks to her, I’ve been pain free for over four years. And I don’t take being pain free lightly after what I went through. I am immensely grateful to her.
Susan exhaled and I could envision her shoulders falling forward. “No, I kept quiet.”
“I hope you never go back to him,” I said, probably a little more forcefully than I should. “You shouldn’t be treated that way. Besides,” I added, “You know how he over-tests to make more money.”
Susan managed a weak laugh. “He wants me to have an endoscopy every year.”
“Is that because of the pre-cancerous condition in your throat? Something connected to GERD?” I’d asked her before for the name of the diagnosis but never heard it in a clear way.
Susan tried to wave me off. “Oh, I don’t know. Something that could turn cancerous.”
I jumped in with both feet. “I think you need a second opinion on the diagnosis Dr. Snark gave you about your throat and the pre-cancerous condition. Besides, a good relationship between you and your doctor is essential for good care. You have to feel comfortable with your doctor and you don’t with Snark.”
“True,” Susan said. “My internist recommended that I ask Dr. Snark for a breath test because of the ongoing diarrhea, nausea and bloating.” She paused. “You know how long I’ve been dealing with this.”
“Yes, longer than I did.” My gastroenterologist ordered several tests and a breath test. I tested positive for bacterial overgrowth and after the medication, I feel better than I have in a long time.
“Dr. Snark refused to give me a breath test.”
“He said I had one in 2009 and it was negative.”
“But it’s 2016.” I was winding up, anger fueling my words. “Did you explain to him that your internist recommended a breath test?”
“Yes, I told him. He wants to do another endoscopy.”
I exhaled sharply. I wondered if Dr. Snark denied the breath test because he makes less money since that test is done at the hospital and the endoscopy is done in the surgery center that he owns. I kept my thoughts to myself.
Her voice wavering, Susan said, “I don’t want another endoscopy right now. Something about it just doesn’t feel right. Seems like I just had one.”
“Listen,” I said as adrenalin lit my brain. “Here’s the name and phone number of my gastroenterologist. At least see him for your current symptoms and get a second opinion on your throat thing.” As we spoke, I emailed her his contact information and link to his website.
And then something occurred to me. “Who gave you the diagnosis of the blockage in your legs?” Once again I wished that Susan would share the exact diagnoses given by her doctors. Maybe she was afraid that I would research them and find out they were worse than she’d thought.
“Did you recently get imaging tests done?”
“No, only the full body scan from two or three years ago that the cardiologist ordered.”
“Did your internist have the imaging tests there with her when you saw her?”
“No, just the report from the cardiologist.”
I asked, “Did that report specifically say you had blockage in the arteries in your legs? I don’t remember you mentioning that when you had that full body scan. But it’s been a while.“
Susan was silent on the other end. “I don’t know.”
Did she have the right diagnosis? At least 5 percent of outpatients experience diagnostic errors, and I suspect that percentage is very low. I suggested that Susan go back to the cardiologist for the pain in her legs. I repeated the importance of seeing a new gastroenterologist for her current gastrointestinal symptoms and for a second opinion on the throat/GERD issue.
Susan perked up. “You know, as we’re talking I’m beginning to see things a little more clearly. I haven’t been feeling well and I just am not on top of things. I just took what Dr. Snark said to heart and that was it.”
“It happens to everyone,” I said. “Especially if you aren’t feeling well. Let me help you get your records and information together so you’ll be prepared when you see the next two doctors.”
Susan thanked me and said she felt much better. Patients most always feel better when they take some control over their healthcare and become a part of the equation, part of the discussion and decision-making. I emailed her a to-do list and offered to help her create her own packet of health information with symptom diary, medication list, allergies to medications, list of questions for doctors, copies of pertinent medical records, and more.
I wonder how patients with multiple medical conditions or complex cases make it through our fragmented healthcare system alone. Especially if they aren’t feeling well. How does anyone advocate for themselves successfully without becoming overwhelmed or confused?
We all need patient advocates to assist with our doctor visits and hospital stays. We need them to help sift through the quagmire of fragmented care, the lack of communication between doctors, to encourage second opinions, to research diagnoses, medications, treatments and tests. To help us remember what we might have forgotten when clinicians convey complex medical information.
Advocates should be provided and paid for by health insurance. It would certainly help patients and could very well help the bottom line of health insurance companies.
With preventable medical errors taking the lives of 400,000 people a year, and costing our country one trillion dollars annually, don’t you think we need to change something with our system?
Not every patient is able to be an effective self-advocate. Not every patient has someone to help them. Not every patient can or is willing to deal with online patient portals, Health IT, apps, and more. Sometimes it just comes down to the need for a caring human being to help.