When her mother suffered an aneurysm, the author found the road to competent care obstructed by misinformed, paternalistic peers.
When her mother had an aneurysm, the author found the road to competent care obstructed by misinformed, paternalistic peers.
What started out as my mother's headache eventually grew into an exposé of how hard it is to navigate our health care system.
You'd think I wouldn't have needed this learning experience. As an FP who works at an indigent care clinic, I've long recognized that when I refer a patient for specialty care, I must continue to serve as his guide and advocate. I've spent countless hours on the phone with consulting physicians trying to stay abreast of emerging diagnoses and treatment options. I've translated medicalese into English for bewildered patients. I've held their hands as they've struggled to make medical decisions that felt right to them. I could help because I knew the systemor so I thought.
My re-education began when my mother, Mariam, called to say she had undergone an MRI/MRA for right-side headaches that had plagued her for several months. "My internist said I have an aneurysm, but I'm not sure what that means," she told me. "Please call him."
I wasn't surprised that my mother didn't quite understand the diagnosis. She was born in Afghanistan; English is her second language. If medical jargon could baffle native speakers, it was even more opaque to people like my mom.
When I spoke to the internist, he uttered words that my mother surely had never heard before: "Right internal carotid aneurysm." I felt chilled to the bone. All aneurysms spell trouble, but this one was inside the brain, making it difficult to reachand increasing the risk of complications. Scarier still, the aneurysm was sizableabout 10 mm in diameter.
The internist had already scheduled an arteriogram and consulted with Arthur Hayden, a neurosurgeon (I've given pseudonyms to all the doctors in this account). I called Hayden to get his preliminary assessment. "Your mom doesn't necessarily have to have surgery," he said. "There's a new catheter procedure that involves packing the aneurysm with microscopic platinum coils, which leads to blood clotting and the growth of endothelial cells at the aneurysm's neck. That way, you seal off the aneurysm without the risks of brain surgery. Depending on the anatomy of the aneurysm, the coils may be your best bet. Let's see what the arteriogram tells us."
On the day of the arteriogram, I took off from work and drove Mom to the outpatient surgery clinic. We were both nervous. I was worrying how our family would cope if anything dire happened to my mother. An energetic, active, 63-year-old woman, she was the primary caregiver for her own 80-year-old mother as well as my 70-year-old father, who had Parkinson's disease. And she was beloved by her four children.
Mom kept repeating, "It's all in God's hands," but the crisis was slowly eroding her customary zest for life. A believer in informed decision-making, I had chosen to explain the full significance of a cerebral aneurysm to her early on. Now I wondered whether I had given her more information than she could bear.
At the clinic, we waited three hours before meeting Howard Thorpe, the interventional radiologist. He encouraged my mother, shivering in a hospital gown, to consider the coil procedure. "I can do it today if the anatomy of the aneurysm is conducive," he said.
My mother and I balked. I had taken a crash course on the so-called Guglielmi detachable coil procedure, thanks to a literature search conducted by one of my practice partners, and I had my doubts. Under certain circumstances, coils weren't so reliable. In contrast, surgically clipping the aneurysm was a tried-and-true solution, and my mother was a good candidate for it. So we told the radiologist that before we made up our minds, we wanted the neurosurgeon to review the results of the arteriogram.
"Hayden is out of town and won't be back for a week," said Thorpe, "but I'm sure that he'd agree with me if I decided that coils were appropriate."
I was taken aback. Hayden hadn't mentioned that we'd have to wait a week for his opinion. And Thorpe seemed to presume too much. A cocky sort, I thought to myself. But before I could reply, my mother flatly stated, "All I want is the arteriogram." Leave it to Mom to take charge.
While the dye was coursing through my mother's blood vessels, I reviewed the literature on treatment options. It became clear that we had to answer at least two questions before making our choice. First, what was the exact position of the aneurysm? If it was pressing against a blood vessel or nerve, it shouldn't be filled with coils lest the pressure continue. Instead, it should be clipped. My mother's aneurysm was near her right eye, meaning that it could be compressing the optic nerve. So position was vitally important: Mom's eyesight was at stake.
Second, how wide was the neck of the aneurysm? If the neck was too wide compared with the rest of the bubble, coils might not achieve a complete seal and the aneurysm might recur. The coils could even come out. Ideally, the dome of the aneurysm should be twice as wide as the neckand absolute neck diameter should be under 5 mmfor coils to work. I braced myself to discuss these fine points with the radiologist.
Mom returned from the angiogram lab within an hour, a little groggy from sedation but in good spirits. Then Thorpe appeared. "I'm ready to schedule the coils," he said.
"How big is the aneurysm?" I asked, want ing to see whether the arteriogram had confirmed the dimensions suggested by MRI.
"It's pretty big," replied Thorpe, smiling. He seemed unable or unwilling to cite exact measurements. As one physician speaking to another, I thought Thorpe would have been more precise. But here he was, someone I had never met before, expecting me to put blind faith in him.
"How's the dome-to-neck ratio?" I asked.
"Is the aneurysm compressing my mother's optic nerve?"
"No, no, no," he said dismissively. "There's nothing to worry about. The coil procedure is the clear choice for your mother."
Thorpe was going to leave town the next week, so he wanted to schedule my mother right away. Again, we said we preferred to get an opinion from our neurosurgeon before consenting to anything. Thorpe agreed to wait to hear from us.
Eager for answers, I called Hayden's office that Monday. True, Hayden wasn't around, but maybe one of his partners could review the film. No such luck: All of the partners had gone to an annual conference. I was at a loss.
My boss came to the rescue, recommending two other neurosurgeonsboth highly respectedat a nearby teaching hospital. I spent the next few days on the phone, trying to round up one of these guys. I squeezed in the calls between patient visits and long-distance conversations with family members in Florida, Washington, DC, and New York, all of whom wanted updates about Mom's condition. Some of my relatives are physicians, too, so I got an earful of their opinions. My head was pounding so hard that I worried about having an aneurysm myself.
I finally tracked down one of the recommended neurosurgeons, who agreed to review the film. I then called Thorpe, the radiologist, and requested a copy of the arteriogram. He laughed at me.
"You're only going to confuse things by going to another surgeon," Thorpe said.
"You may think so, but I insist on getting the film," I replied, standing my ground.
"Okay, but what you plan on doing won't change anything."
I could scarcely believe what my family and I were experiencing. Was it supposed to be this hard to get a surgical evaluation? If I, a physician, was having so much trouble, how would one of my patients with an 8th-grade education fare? And why was Thorpe so paternalistic and impatient? It crossed my mind that he was either angling for a fee, or intent on filling his quota of coil jobs to retain his privileges.
Enough was enough, I decided. I called Mom's internist and poured out my frustration. He listened carefully and empathetically. After confiding that he'd feel the same way if he were me, he said that Thorpe had just called him to say that my mother was having the coil procedure that Friday. The audacity of that man left me speechless. The internist counseled me to postpone the procedure until I could talk to Hayden. He also suggested that I see a crackerjack neurosurgeon named Mark Rosin for a second opinion.
For once, things seemed to click. Rosin was the neurosurgeon recommended by my boss, who had agreed to review the film. Unlike Hayden, who was a generalist, Rosin specialized in treating aneurysms. I looked forward to meeting him.
But first, I heard from Hayden. "I spoke to the radiologist," he said, "and I agree with his assessment. Taking the film all over town will simply muddy the waters. I won't operate on your mom, and I don't think you'll find anyone who will, considering that coils would be less risky." But when I mentioned Rosin's name, he did an about-face and said he'd be interested in hearing his opinion about the case.
The following day, my mother and I sat for two hours in a frigid exam room before Rosin arrived, but the wait was worth it. Drawing pictures as he spoke, Rosin patiently explained our choices. The first, to do nothing, was inadvisable because of the aneurysm's size and location. As I had feared, it was compressing the right optic nerve. Even if the aneurysm didn't rupture, it could damage Mom's vision. The second option, the Guglielmi detachable coils, wasn't advisable for two reasons. The aneurysm's dome-to-neck ratio was under 2, meaning the neck was relatively wide, increasing the odds of failure. And there'd still be pressure on the optic nerve.
Surgery, said Rosin, was the most reasonable option. While clipping such a cerebral aneurysm wasn't a routine operation, he had done it many times.
"But you don't have to decide right now," said Rosin. "Mrs. Nassery, you've probably had this aneurysm for years. Although I can't guarantee that it won't rupture tonight or tomorrow, I think you could wait a couple of weeks before having the operation. You have enough time to get another opinion, if that's what you want."
Mom and I thanked him and left the office with tears in our eyes. I don't know whether it was Rosin's bedside manner or his acknowledgment that we might want another opinion that won us over, but we were delighted. "Thank God," I said. "We found someone we can trust."
My mother skipped the third opinion and chose Rosin to perform the surgery. She was understandably anxious, but the operation was successful. Optic-nerve compression did damage her vision, but otherwise she's recovering well. And by having the aneurysm clipped instead of packed with coils, she doesn't have to worry about its returning.
As for me, I've recovered from the stress of shepherding Mom from doctor to doctor while continuing to see patients and attempting to lead a private life. Fortunately, my professional colleaguesmy boss, my partners, my mother's internisthelped me endure the crisis.
However, other doctors in the story made a difficult situation even worse. The radiologist was dead wrong about the aneurysm's location and dimensions, yet he had the gall to laugh at my concerns. The first neurosurgeon was nice enough, but he too had discouraged me from getting a second opinion. Again and again I've asked myself, "If this is how a doctor gets treated, what happens to patients?"
This experience shook my faith in the system. I'll never take good, conscientious health care for granted again. However, I did learn four lessons on how to be a better patient and patient advocate.
One, when you face the prospect of a serious operation, gather information about it from independent sources as well as the practitioner who'll be wielding the instruments. After all, the latter's recommendations may be rooted in self-interest.
Two, when you evaluate doctors who perform invasive procedures, find out how many they've done. Asking this question doesn't make you obnoxious. You have a right to know.
Three, when your parent has a medical problem, make the time to go to the doctor's office with him. He'll appreciate your moral support, and you'll have a chance to size up the doctor in person. Can you trust him with your mom or dad's care? The doctor's demeanor will speak volumes.
Lesson four: Follow your gut instincts. If a doctor makes you nervous, find somebody else.
I've always considered myself a doctor people trust. But ever since my mother was shabbily treated, I've been more diligent about ascertaining and respecting my patients' wishes. If someone needs a knee replacement, for example, I'll first ask how he feels about that instead of blithely writing a referral to an orthopedic surgeon.
And if the patient and I agree that a referral to a specialist is a good idea, I leave him with this advice: "If the doctor suggests something that you're uncomfortable with, you don't have to do it."
As I found out, what a doctor orders may be out of order.
Hogai Nassery. If they treat a doctor this way, what must patients endure?. Medical Economics 2000;7:149.