Category Archives: MEDICAL – CROSS-CULTURE

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.

EMOTING

I was in agony the other day at Labor and Delivery. No, I was not in childbirth. And nothing was actually going wrong. The baby was born. The birth had been a success. A nice, healthy delivery. The father was at the mother’s side. The whole family was doing fine. Their three-year-old was with Grandma and they were calling her to have a video chat and show the new baby. The nurse had stepped out for a break. A relaxing moment. So what was so hard?

The three-year-old on the phone burst out crying at soon as they showed her the baby. She kept on crying. But they didn’t soothe her. They didn’t comfort her. They kept her on the phone and they let her cry on and on. They didn’t explain anything to her, beyond telling her that this was her baby sibling. They didn’t tell her they still loved her. They didn’t say when they would be home. They didn’t even tell her she was going to live with them again. They just let her cry for an agonizing extension of time.

She cried and wailed. I swear I could hear her gnashing her little baby teeth. The most basic fear of any vulnerable person – being rejected and replaced – was alive on her pudgy little tear-stained cheeks. Her fists were clenched. Her face was a grimace of pain. She cried until she coughed and choked on her tears. After her coughing fit, Grandma helped her blow her little nose. One fluttering heartfelt sigh, and this unwilling big sister again took up her loud, wailing lament. Good God!! Where was the comfort? Grandma was standing at the sink in her apron, laughing softly in the background, not in a mean way, but more like, so it is. The wheel of fortune has once again turned the only child into an older sibling.

I felt my stomach knotting up. I wanted to comfort this unknown child. I longed to give her some context for what she was feeling. I wanted her to feel safe. I wanted her to know she was still loved. I wanted to tell her there was room in these hearts for her and for the new baby. That there was no need for jealousy. That she was still welcome and beloved. My stomach felt knotted and I had to force myself to stay relaxed and neutral as the crying spell drew out from a seconds into minutes and more minutes. More than five minutes. More than ten.

More than fifteen minutes. For God’s sake, why wouldn’t anyone calm her down? And yet, why did I feel so strongly that someone should? How we show and share feelings is encoded in our cultural, personal, and moral decisions based on our values and beliefs. Each culture and each family has its deeply rooted unspoken rules around how we display anger, sadness, and even joy in commonly accepted and appropriate ways. And each individual varies these displays based on what we were taught, and how our loved ones and others react. We tend to hide what is unwanted.

So, taking a step back from my urge to help. What if the thing this big baby most wanted was a good cry? What if she felt called to express her deep pain and agony? Her fear of abandonment? Her cry for acceptance? What if she needed to fully express her instinctive jealousy of sharing the nest with this interloper who had already taken Mommy and Daddy away from her? After all, there the three of them were, and she was banished to Grandma’s! Why shouldn’t she cry if she felt like it, and exhibit her absolute rage, and why shouldn’t we simply listen, instead of explaining away her feelings and telling her to calm down?

The parents were listening. Mom had the baby on her chest and the phone in her hand. Dad leaned in, and clucked and made little sounds at his big, crying baby. Mom turned the phone to display the newborn a few times, then went back to gazing intently at her crying daughter. She didn’t tell her to shush. She didn’t tell her to quit crying. She didn’t tell her what to do at all. And she gave no explanations about how this would all work out. She just said things like, the baby has come. Well, well. There now. Okay sweetie. Look at the baby. Yes, my dear. Okay, now. Yes, so it is. There, there. Here is the baby.

The little girl cried for eighteen minutes. I kept measuring it on the clock, because I wanted it to be finite. I wanted it to end. She was still crying when the nurse got back, and the nurse immediately said, “Oh, no!” and suggested they hang up, but they didn’t hang up. They kept their daughter on the phone. They kept listening to her cry. The girl cried until her shrieks subsided to sobs and hiccups. Until she had fully expressed herself and put her arms out for Grandma to come pick her up and hold her. There was something in it that was complete. Something that went deeper than rushing in to soothe the girl and explain away her feelings and hush her up. There was something in it that was quite uncomfortable and quite grand.

SHORTS

I hate shorts. I don’t care if it’s a hundred and five degrees out. I really hate them. I’m never gonna wear shorts again. Because we were so poor. I was the youngest of seven living children, with some ghosts in between us, you know, the babies who didn’t make it. And we had enough clothes for maybe three kids, but there were seven of us living. So when my older brothers wore out their pants and the knees were all ripped out, my Mom would just be like, oh, that’s okay, we can just cut them off and Baby can wear them. And guess who Baby was? Yup. Me. Oh, it was warm enough. The problem was that nobody wore shorts except the poorest of the poor, and that was me. It was a mark of shame, like having no underwear or torn shoes. I’ll never forget it.

I can still look down and see my skinny, knobby little knees. One or the other always had a scab on it, sometimes both of them did. Dusty and dirty and one sock that was falling down because it wasn’t the same size as the other one. When I even had two socks. My wife makes fun of me for being such a Junior now, you know, dressing up nicely with a neatly pressed shirt and a pair of slacks. But honey, at least I iron my own clothes, right? Because it means a lot to me. It means the world. It means I have enough to eat, and a safe place to live, and my kids have enough to eat, and we don’t have to feel ashamed about anything like that. Because God knows I wouldn’t buy myself nice clothes unless my family was already fed, housed and clothed! I still remember exactly how I felt as a poor little guy.

Do I have a little shoe-shine kit? Yes, I do. Do I like to have pants that are a little bit shiny and don’t wrinkle? Yes again. Do you see my knees if I am not wearing a hospital gown? No, Ma’am! Because I have two clean knees and nice pants to cover them. My wife here can giggle all she wants. I know she understands me, even when she jokes about it. Ask her about her one dress and the missing button. Go on, baby, tell the interpreter about the safety pin you had to use. And how you looked all over for that button. For weeks! And then finally figured out it must be three miles down the river from where your Mom washed your clothes. Far out of your reach. You remember. These memories go deep.

We’ve come a long way, not just on the map, you know, but in what we can provide for our family. So if anybody wonders why our kids look like they’re dressed for church just to come to the hospital, now they know the reason. We’re not raising them to be proud, God forbid, but we never want them to feel ashamed of something that’s not their fault, like poverty. I promised my wife I would take good care of her if she joined me here, and so far I have. And that’s a good feeling. That’s something to dress up for.

QUESTIONS

Patients are being invited to ask questions and voice their concerns more these days, and it can be eye-opening to the medical providers. I was with a surgeon who was doing her final pre-surgical review with a patient, and the questions the patient’s family asked made her step back and realize she needed to explain the surgery over again from a whole new perspective. The doctor had come in presuming the patient and her family had understood everything just fine at the office visit, but the questions that came up when I was with them told a much different story. It was illuminating for all concerned to share this question and answer session. I am glad to see this happening as a more regular part of healthcare.

When asked if she understood what was going to happen during the surgery, the patient admitted she really didn’t know what her body parts were that were slated for removal. Just that they were “down there”. So the doctor was able to make a simple drawing, and instead of just naming items like ovaries, womb, bladder and bowel, she showed their shapes, and said what each organ does, in a simple way.

The husband’s main concern was whether any men would be in the operating room. He was very concerned about his wife’s modesty. The surgeon was able to reassure both him and the patient that she would be covered up and that everything would be done “decently and respectfully”.

The son said he was really surprised to hear that his mother had two ovaries, because he had always heard that women just have one. The doctor was able to explain that the gonads in both men and women, that is to say, both ovaries and testicles, come as a pair. In men, they descend and hang outside. In women, they stay deep inside. She pointed to her drawing to show where they were. She explained that is not where the baby grows, and we do just have one womb. She pointed to that as well.

The daughter, a college student who is bilingual, asked if after the doctor removes the ovaries and the pathologist looks at them, whether she going to put them back into the mother’s body. Will she be able to clean them up and then reattach them? The doctor was able to explain that the ovaries are very diseased, and have been destroyed or eaten up by the cancer, so there is nothing left to put back. But she assured the patient that beyond the ovaries, they would only take away what was badly diseased, and work with the pathologist during the surgery to decide what could be left and what removed. And reminded them that this may include some bladder and bowel, and showed these items on her drawing again.

It is useful and healthy for patients to get their questions answered where they are at. It is useful and healthy for care providers to have a better sense of their patients’ background knowledge, concerns and worries. Questions, even the kinds of questions we tend to cringe at (like will anyone see my wife’s private parts) need to be answered. Because healthcare providers do not get to decide what is important to the patients and their families. I saw the doctor’s facial expression change from hurried to surprised. Then she stepped back to explain the procedure better, and talk with the patient where she is at. With each well-answered question, the faces around me relaxed and shoulders dropped. They nodded at each other.

At the end, the doctor placed her hand on the patient’s arm, and invited her to ask anything else. The patient admitted she was “too scared” to ask anything else, and just wished it was over. The doctor nodded and thanked her for sharing that. Then she added that the patient is in good hands. She is with experts at a specialty hospital. Her cancer is being diagnosed, and they are going to take out the least amount of tissue possible. Then she can meet with the cancer team and see what else can be done. “One step at a time,” she told the patient. “We will just take one step at a time!”

“We place our trust in God and in you, Doctor!” the patient responded, and her family members nodded in unison with newly earned trust for the healthcare team and the process this patient was facing. Time spent? Probably a total of ten minutes to smooth this patient’s whole cancer journey and create a space for the healing we all hope for. Time well spent for all concerned. Including the doctor, whose life is enriched by getting to know her patients more fully.

These kinds of question and answer sessions bring us much closer to our goal of fully informed consent. They give reassurance. And they help doctors communicate in a way that is more helpful and meaningful for their patients. The more we can move away from our canned presentations into a more fluid and welcoming communication style, the better patients will feel. Because what patients face on the physical front is enough without adding any unnecessary fear and uncertainty. Where we can inform and comfort, we should. I am happy to see this happening more.

NOT THE PATIENT

Individual interpreters have a wide range of ideas as to the outer limits of our role – a few eager ones virtually taking over the session to tell the staff what they “know” their patient wants and needs, thus in their sincere desire to protect and empower becoming the new benign patronizers.  When tempted to do so, because we all have these instincts, I remind myself that I am not the patient.  I cannot know what they think, feel, need and want, no matter how empathetic I am.

I remember cringing (expressionless of course) when someone with a transplant failure was going to enroll in yet another study, but he wanted to.  He was destined to die within a few weeks, in what I considered needless suffering, but he said if he could help others (while dying in his 20’s) it made him feel better.  Not my decision!  The examples are endless, and interpreters who give their patients space to express themselves (even when they sometimes won’t) run across these kinds of things regularly.

I have been pondering the fact that beyond the “big picture” cultural and social issues, we have the micro level personality differences and very individual points of view.   We are not the patient, and what they want we cannot assume to know.

A simple example of the most mundane and micro level difference between me and a recent patient.  We were in pre-surgery, and the patient was naturally anxious.  I was concerned the nurse was making her more so.  She was a veritable fussbudget.  She ran, she stumbled, she dropped things, she called out things like oh, dear!  And talked to her computer screen.  She fidgeted and almost trembled.  She looked worried and frowned, and showed herself to be in a huge hurry.  All the while with a running undertone monologue that I had to simultaneously interpret.

Myself, I thought, gosh, she is upsetting the patient.  I wish I could say something, like sorry about the nurse!  Or, don’t worry, she is trying to hurry but the surgeons won’t be in a hurry – they will be calm, and she is not our surgery nurse.  Whatever my mental fantasies were, I of course did not state them.  But such a nurse would have made me, as patient, so anxious!  I got a bit of a nervous stomach wanting to help comfort the patient, but my hands and tongue were tied.

Right before we went back to surgery, the nurse went out, and the patient turned to me.  She said, “This nurse is doing such a good job!  I can see she really wants to help me.  What a wonderful nurse!”

Thank goodness I was able to remember that I am not the patient.  I am not having the patient’s experience.  I am having my own experience, and most of what happens in the patient-caregiver scenario is frankly none of my business.  And it is my business, with very few exceptions, to keep it that way.

HOW FAR TO WALK?

Years ago I was with a delightful family of people from a small village in another country.  The grandfather was fascinated by me and had a thousand questions, many of which I am not allowed to answer.  There is much argument about whether and how much medical interpreters should talk with patients, with answers ranging from never to whatever.  But in my setting at that time, we were allowed to converse as long as we NEVER gave medical advice or opinions, stayed away from giving opinions about anything such as politics and religion, and avoided oversharing personal information.

As someone who does not fit into the ethnic group for which I provide services, many conversations being with the patient asking me how I learned my language and where I myself come from.  Especially for smaller indigenous and traditional groups, knowing who my people are really matters to them.  I found some short answers that usually work without offending, then I deflected the conversation back to the patient.

This grandfather was asking me these same things and I ended up telling him my people come from a village where two languages are spoken.  He nodded sagely at me.  There are two languages spoken in his village – the indigenous language and the occupying language.  I told him it was the same in my family village.  He asked me to say the word tobacco, then horse, then rain, in both languages and noticed that they were very unalike indeed.  Just like his village’s two languages.

Then he said, “How far to walk?”

I looked puzzled, so he added, “How many hours?”

I was still confused, so he asked, “How many hours does it take for you to walk from here, this city, to your father’s village?”

I told him you cannot walk there from here.  You have to fly.  And you have to be in the air for about 15 hours.  For some reason, that was a delightful surprise to him, and he started chuckling and pretty soon the whole family was laughing about the village that you cannot walk to.  As far as they had all come to get here, it seemed impossible to them that anything could be that far away.