BEWILDERED

When I tell people I work as a medical interpreter, they often joke that I should go with them to their own doctors, as they find doctors hard to understand. But these jokers are well educated. They have insurance through their work. They have permission to live and work in the US as their birthright. Their native language in English. They can understand the gist of what their healthcare team may tell them, and are competent to research their condition and look for support groups. Most get routine checkups and screening tests, understand what each prescription they take is for, and are even aware of risk factors based on their family history. They also have a clear sense of how, when and who to call with questions, referrals, prescription refills, and more. They may not like the price tag, and they may not religiously follow the recommended health regime, but they can access and manage the care they need. They are medically literate.

Our patients who need interpreters tend to have a vastly different experience. Of course we run across educated and nearly fluent patients. But the typical immigrants who cross the border to do field work and manual labor have had extremely limited opportunities for education at home. Most have not had formal healthcare, certainly never in a high-tech foreign set-up. And their complete bewilderment can be so extreme that the typical US citizen as described above cannot easily process or even believe it. Sometimes, when I offer a scenario of what a typical patient said or did while free-falling within our healthcare system, these same people ask me, “But how can someone be that ignorant?!”

My first response is to question whether they mean the staff or the patient, because the gap in care is the space between the two parties. My second answer is that we don’t know what we don’t know. None of us tend to notice where our blinds spots are, because we cannot see them. We are each and every one bewildered in some aspects of our lives, be it home repair, intimacy, or balancing our finances. Believe me. We are all stumped somehow or another. I am routinely bewildered and frightened at my sense of displacement and helplessness in managing tasks that others seem to handle with ease. But being bewildered about one’s own body, and how it works, and how to access healthcare, can be life-threatening.

This week, I took a video call with just such a patient, and saw the caregiver’s eyes getting bigger and bigger as the interview went on. The patient had walked into the Emergency Room with a tangled tale of severe pain in the heart, stomach or lungs. Could he get something for it right away? No? Oh, dear. Questions first. Okay. It started two days ago, the night before last, but it had been going on for oh, 6 or 8 months. But it moved around from here to there and it came and went. He wanted something for pain. When did it get bad? You mean before, or now? You could see that the patient was trying to answer but he was really not understanding the purport of this line of questioning. The doctor could not figure out how to get him to focus his answers so she could the specifics for a quick and efficient diagnosis, or at least decide what testing to offer.

At some point, the patient happened to mention that he had been seen at a connected clinic, and the doctor was able to find his chart online. She took a moment to read through it, and said, “Oh! I see you have been in treatment for cancer. You never said! How is that going?” And he launched into an explanation of how he broke his arm at work, and they sent him for an x-ray and it was called something like a fracture, but that means broken, and then the doctor found he had some kind of myo-something that is in your bones and it’s kind of like a cancer that eats something in your bones and he doesn’t know if that’s why the bone broke but he doesn’t think so, because he broke it at work. They had a new guy driving a tractor who shouldn’t have been. The doctor was still reading the file on the screen, and noticed he got some chemotherapy around six months ago but then it terminated during Round Two. “What happened? Why did you stop? The chart doesn’t say.”

He told her he quit the chemo “because I got hiccups in my stomach and it lasted for a day and a half”.

She turned from the screen and stared at him. “Wait. Wait. You quit chemo because you got hiccups?” She put her gloved hand to her forehead to help her process this fact.

“Yes. Hiccups in my stomach, here,” pointing to his stomach. “That was oh, late last year maybe? Hard to say. But now I am in a lot of pain. I kept hoping it would go away. I sleep sitting up in case it might help. And drinking warm water before bed, but it hasn’t helped. Pills? I was taking lexo- or levo- something like lexopheno something? But I ran out. No, I didn’t bring the bottle. No, I don’t really know what it was for, but the doctor prescribed it so I took it. Which doctor? Well, they keep switching them, but it was a lady with a ponytail, reddish hair. Really tall! Do you know her? Annie? Alice? Something with an A. Do you think I should keep taking those pills? Do you think they help?”

The doctor brushed over these questions with a “we’ll see” so she could move on to the physical examination. Then she noticed a heart murmur, and inquired about that. He seemed confused again at her line of questioning. It all seemed mysterious. Where was she going? What was she thinking? Could he get some pain pills, please? Not yet? Okay. Let’s talk about the heart, then. He was writhing in the bed, clutching the blanket.

“Family history of heart problems? It seems to me that my mother had some kind of a heart thing but you know I am saying it seems to me, because I haven’t been around her much. You see, I was sent here to work when I was a teenager and I never got home to visit her again. I can’t cross the border and re-enter, you see? So I just send her money and my brother said there is something wrong with her heart, but didn’t say what. I can’t call too often because I have to use a pre-paid calling card and they can’t call me because my number keeps changing every time I buy a new calling card, and my Mom doesn’t have a phone at home, so I have to call one of my brothers or my orphaned niece but she doesn’t live in the village now.”

The doctor asked again if he had ever been diagnosed with a heart murmur.

“Not that I know of. I mean, I don’t know what that is. Do you think something is wrong with my heart? Is it the same as what they call wind, or air? Like a leak? Do you think that’s my problem? Do you think it will get better? What should I do for it? Is there treatment? Or diet? Can you tell me? Because I really need to work!”

The doctor put her gloved hand up as if to stop the flow of words. She had other patients waiting, and the Emergency Room was neither the time or the place to have a long, cozy chat with one patient. It is not set up for that. She told him that she would try and figure out what medicine he was taking, and look in his chart. Because if he had already had a heart murmur for years it might not be a problem. It’s not always dangerous, but if it was something new, she would want to investigate it further and run some tests, just to make sure he wasn’t in any immediate danger. “We’ll figure this out and let you know what we think is going on,” she told him.

“Good! That’s what I’m here for! So you can figure out what’s wrong with me and fix it!” he told her, then repeated his urgent request to get some pain relief while waiting. Please. The doctor reluctantly agreed to give his a low dose of Oxycodone. The patient adjusted himself in the bed and straightened out his blanket with seeming satisfaction: “You’ll put me to rights, Doctor, I have no doubt of it! May God repay you because I cannot! Bless your heart, and guide your hands. I am in your hands now, Doctor!”

A cloud crossed the doctor’s face, and I strongly guess that she was pondering, then discarding, the option of taking yet more time to try and explain how the US healthcare system works. That the ER is set up to stabilize and release, not at all to do an in-depth heart work-up, manage medications prescribed by other doctors, or monitor ongoing cancer treatment, let alone explain how chemo works or “fix his heart”. She decided to end there, and with a quick thanks, she reached over and disconnected with me.

I am not at all suggesting that an emergency room can or should take the place of a community clinic, a social service center, an immigrant’s rights project, a housing service, counseling program, labor union, adult basic education, citizenship classes, or even cardiology and cancer care. I understand and agree that emergency services are for acute discrete emergencies – what some of us call “catch and release”.

My issue is not with what this Emergency Room staff did with this patient, but how and why so many of our patients end up in an emergency room when the care they need would be better served elsewhere. What is happening in the clinics, what barriers to care are being unwittingly placed that end up funneling people like this patient through the busiest and most expensive door in the building, where the routine and ongoing care they need cannot be provided?

As my screen went dark, then switched to “available” for the next incoming call, I was left pondering on hiccups, and dropping out of chemotherapy during the second hopeful round, and wondering what the missed opportunities were, back while he was getting cancer care. Who didn’t talk to him? Who didn’t provide an interpreter? Which resident practiced their poor second language skills on this patient and presumed he had understood? Who didn’t listen to his questions, which would have quickly revealed his confusion and lack of framework to even begin to process his own healthcare and treatment plan? Who didn’t obtain a message phone number to reach him? Where did the system fail him?

Fixing the world so that everyone will have a nurturing childhood in a safe environment, educational opportunities, good and safe jobs and health habits along with overall quality of life is not the short fix, obviously. Some staff go the extra mile to make sure patients understand as best they can, and give them extra guidance to assist in their education and integration into our complex healthcare system. Some hospitals are using patient navigators, who work with and educate incoming patients and families about how the system works, and conversely train staff on what the patient and family may need. This seems like a great way to close some of the gaps that still exist in our healthcare delivery, and I understand that it can save time and money as well, because it increases efficiency along with quality of care and outcomes. For a patient unused to this system, having a friendly patient care navigator could be a life saver.

I hear a few of you demanding to know what I think about this patient’s own responsibility to take care of his own health. He shouldn’t have quit chemo! For hiccups! Come on! What an idiot! Can anyone be that ignorant? Yes, they can. Because they didn’t have your opportunities. And yes, as you may have guessed, his cancer is back and has now spread, which is why he is in so much pain. So if you think he should “suffer for his stupidity” I can assure you that he has and he will. I just don’t happen to believe that his ignorance is his fault. I believe he is straining to his utmost to understand and navigate our healthcare system. So I hate to see him free-falling into the gap. And I don’t think it is much to ask that some of our trained staff within this bewildering and complex system should put more thought into how to help the poorest and most vulnerable among us to access appropriate care.