Sunday, April 3, 2011

Communication Culture Shock

When you move from a medical culture like America’s to a markedly different one (like Laos) you notice stark differences initially, but then you readjust your expectations and things seem normal here that would be totally bizarre at home. I was reminded of this 2 weeks ago. I had seen a confusing patient with the resident at Setta - and 80+ year old woman who had come in with a severe, unilateral temporal headache that had been present for 2 months. She had photophobia and tearing but also had some swelling and redness. She had no fever, though or other infectious symptoms. She had been seen at another hospital, had a head CT, and told she had brain cancer. “Great! Brain Cancer!” I thought. Of course brain cancer is never great, but a mass lesion in that area might explain her confusing array of symptoms. She had some weight loss as well, so malignancy was plausible. And in an 80+ year old, not super surprising or tragic - she has outlived her life expectancy by more than 20 years. Plus, a mass could also be parasites or abscess, and treatable.

Only one problem existed with this theory - we had the CT (non-contrast) and we couldn’t see any mass. No clearly defined mass lesion, no significant unilateral swelling or loss of contours of the fissures, no midline shift. Could it be temporal arteritis? Certainly, though the ESR was near normal, making this far less likely. Also, it hadn’t improved with steroids. This makes other autoimmune/rheumatological conditions lower on my list as well. Could it be an optic nerve / retinal problem? Could it be glaucoma - the time course was wrong, and the external eye exam didn’t quite fit, but then she wasn’t really fitting any clinical syndrome convincingly. After two trips to the opthamology department, it was determined that both her external ocular structures and retina were normal. A chest x-ray showed masses on either side of the mediastinum that looked more like tumor than infection or anything else, and an abdominal ultrasound showed a mass in the liver. Oh, and she still had no pulmonary or infectious symptoms. Basically, we had no idea what was going on with this patient, but malignancy was still highest on our list having ruled out a number of other things.

One day, after she’d been in the hospital for several days, I was on my way out of the room when I was stopped by her daughter and asked (In excellent english) if I could take a few minutes to explain what was going on with her mother. I was taken aback. I hadn’t been approached with a question from a family member since leaving America. It just doesn’t happen here. I often have to encourage the residents to stay and explain the diagnosis and plan to the family after we discuss a patient, because otherwise they just write the orders with little explanation. They do counsel patients about chronic disease, etc, but generally, the patients trust the doctors and don’t request explanations of what is going on. This is mostly bad; patients don’t know what has been done before because no one explains it to them, and they are probably more prone to non-compliance if they get side effects, because no one has explained why their treatment is important. However, I realize I have adjusted to this culture.

Her daughter was from Phoenix, where she had lived for the past 25 years, and had been called home because her mom was sick. She was coming from the American medical culture where patients now demand explanations from their doctors. I explained that I serve mostly a teaching / consultant role for my residents, and I do not make any direct patient care decisions, only recommendations that the staff physicians actually directly supervising the residents can accept or reject, so the residents and Lao staff would actually be the final decision makers regarding treatment and testing. I explained that we think her mom has lung cancer with a paraneoplastic syndrome (Cancer associated) or a mass lesion that we can’t see on the non-contrast CT. We could get more info with a head CT with contrast, and a chest CT, but we still wouldn’t be able to make a definitive diagnosis. For that, they would have to go to Thailand where they could get a biopsy and pathology results on one of the masses. However, that still wouldn’t confirm the cause of the headache, which was her only real symptom, and would be expensive. It might result in offers of chemotherapy which the family would then have to decide about. We were pretty sure it wasn’t infectious at this point, and she was getting steroids for theoretical tumor edema, but in doses that should treat temporal arteritis or other rheumatological diseases. My understanding is that the medication options for pain in Thailand aren’t much better than ours here. Of course, there was a period of shock - there are no oncologists in Lao? Nope. There isn’t anyone who could do a biopsy here? Nope, no IR doctors, only general surgeons, and I sure as heck wouldn’t let anyone near this frail, elderly lady for an open biopsy to confirm something we can’t treat. (I seriously doubt the surgeons would have done it even if we’d asked.)

The patient’s daughter absorbed this information. Despite being much more aggressive than a Lao patient or family member, she was relatively reasonable - she agreed that diagnostic testing for something we couldn’t treat was not worth pursuing. Neither doctors nor patients are very comfortable with uncertainty in America. I was feeling uncomfortable about how few answers I could give her, so I was impressed that she didn’t demand a better (or at least more definitive) answer. Then she asked me how long her mom might have.

Doctors everywhere hate being asked this question. Unless your patient clearly is going to die within the next few hours, it’s hard to answer. Even if we have a diagnosis of a specific type of cancer, for example, all we can do is give statistics - most people live about this long - but humans are individuals, and averages are averages - some people will live much much longer, and others might seem fine today and have a serious complication and die tomorrow. And then, of course, any of us could die tomorrow - in a traffic accident on the way to work or from some unknown, asymptomatic but serious medical condition. Everyone know someone who doctors said only had a few weeks or months to live and who exceeded their predicted longevity by multiple times the estimate, making the doctors look foolish for predicting in the first place.

I understand why she wanted to know - she had taken all her vacation/leave time to come and spend with her Mom. Was this the right time to be here? Should she try to go home and come back when her mom was really ill so she could be present for the funeral as well? If she went home, the cost of coming back (>2000$ if your ticket is purchased well in advance) and the transit time (at least 30 hrs each way) would make coming back urgently nearly impossible, especially if all her leave time was used up. I understood the question, but I still resented it. How could I make a prediction about how long this woman would live, not even knowing for sure (or for a strong most-likely) what she had?

So I gave her my standard answer - one that I learned from an experienced Irish hospice doctor. “Of course, we never really know, and doctors are terrible at predicting this. However, generally, if she’s been well and deteriorating slowly over months, she probably has months to live. If you see her getting worse over weeks, she probably has weeks to short months to live, and if she is getting worse day by day, then she has days or short weeks.” I thought given that her mom looked pretty good day by day, that it was unlikely that she would die while the daughter was visiting, but she could be on the verge of a rapid deterioration, so I couldn’t make any guarantees.

Over the next week we tried to get her mom’s symptoms more under control. The steroids helped a little, but not dramatically. IV morphine or pethedine worked briefly, for about 3 hours, but this is not a good solution for a patient who should be working towards going home to spend quality time with her family. Our only oral narcotic here is tramadol - not a strong drug, and one which has a strict dosing limit due to seizure risk. Could we give IV or subQ or IM meds at home? They could have the village nurse come by 3 or even 4 times/day, but we had no way to know if this person would be familiar with IV or sub-Q drug administration, morphine dosing, dose changes etc, so it seemed like a bad idea. (Morphine is only used in the hospital, so it’s unlikely that the neighborhood nurse would be comfortable using it to manage pain.) Not to mention the morphine was only lasting 3 hours, and there is no extended release formula here. I tried to encourage scheduled tylenol and tramadol, and we added amitriptyline, which should help if there was a nerve component of the pain, which the symptoms suggested. We switched the steroids to oral. I had another long talk with the daughter explaining what each medication was for, how much she could take, and how frequently she could take it. I did more medication counseling in that one session that I have done (or seen done) in my entire time in Lao.

The truck wasn’t starting at the end of last week, so I didn’t get back to Setta to see how things were going. I’m not particularly optimistic, since scheduling pain meds is another thing that doesn’t really exist in Lao culture, and since we’re working with such poor choices to start out with. This case did inspire me to put together a lecture on pain and symptom management using medicines available here, which I hope I can give early in May when the new residents are here. (I offered to give it next week but they would rather have exam review, reasonably.)

I think there is a happy medium between the Lao patient / caregiver - almost never questioning or understanding their medications and diagnosis - and the American one - demanding answers (and often tests or treatments). Both cultures often end up with patients who are “non-compliant.” Lao patients who aren’t warned about side effects of important treatments may stop them independently and not return for an alternative. American patients perceive a side effect from a medication and search the internet to confirm that this is possible, stop the med and then blame their doctor for not warning them, even if the side effect has only a few case reports associated with it. Lao patients rely on doctors to order the right tests and treatments without any questioning, while American ones often demand unnecessary testing or treatment that then leads to further anxiety, more money spent on confirmatory tests, and / or side effects. Lao patients should be less trusting and demand more info. American patients should be more trusting - demanding information and explanations, but being willing to accept them when provided, and to work with their doctor to find an alternative.

I also think that returning to patient care in America, this may be my biggest aspect of culture shock - not the availability of tests we don’t have here, the tremendous expenditure of resources we don’t have here, or the absence of diseases that are common here - but the way I communicate with my patients.

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