Herlyn got his ECHO at 8:45am by one of the cardiologists and Emilio stood by our side for the study. When that was done, we waited for another cardiologist to see us. Emilio took me on a tour of UNICAR and when we returned an hour later, Herlyn’s dad, German, was in line for Herlyn’s chart. He had been called in to see the cardiologist but when she found out he’d been to UNICAR before, she sent him for the chart and then he had to get back in line to see the cardiologist again; another hour wait. I can say that UNICAR is far more efficient, organized, and clean that probably 99% of medical facilities in Guate but it is, nonetheless, not immune to silly inefficiencies like this. I got the chance to look through the chart and piece together a bit more information on Herlyn’s history. Apparently he had his first cardiology visit at 2 months, where an ECHO revealed a patent ductus arteriosus with a dilated left ventricle. He was placed on furosemide and digoxin and over the next 6 months a host of studies were done, only two of which seemed particularly pertinent: blood type and blood count. In addition, he had several stool studies, urine studies, a test for syphilis, HIV, hepatitis. It’s really unclear to me why he wasn’t repaired within a week of finding the PDA, or at most a month if the boy had been acutely ill with an infection (unfortunately there were no consult notes, just crib notes with orders for more tests and follow-up appts). I can’t help but think what a big, positive impact it would have made in his life to have been treated promptly. Instead, he can’t run, can’t walk up stairs, has a chronic cough, has required antibiotics every few weeks for fevers, and is developmentally quite behind. In fact, it’s entirely possible he could have died in these last few years. His dad was employed and had government insurance (IGSS) but I still wonder how much faster he would have gotten care if his parents had money, education, or light-skin.
I joined German and Herlyn for their consult. I pulled out my notebook to write down important pieces of information but ended up just writing down notes on the inappropriate things the cardiologist said. After having been in Guatemala for a year, I was not surprised that the patients were talked down to and that very little information was shared with them but there’s nothing more impactful (nor anger-inspiring) than to witness it directly.
The cardiologist started by asking why he didn’t show up for his appointment some 3 years ago. Dad explained that he, himself, had required two surgeries (knee and appendix) at the time of that last appointment and then he lost his IGSS and couldn’t afford the visit. I have heard several different versions now of why they didn’t keep going to their appointments so, while I’m sure the above is true, there were likely other factors playing in, not the least of which dad later explained to me: he was tired of always being chastized by the doctors there for his son being sick (he says Herlyn was always sick and they would get mad at German and his wife for not having taken him to a doctor for each of the illness. He was sick for their last appt and German decided not to send him and thereafter all the rumors I summarized in Part I started taking their toll; he just never could get up the will to go through the process all over again - for financial reasons, fear, pride, etc).
So the appointment kicked off with the cardiologist chastizing him for having endangered his son’s life by failing to bring him back. She then said she was going to give him two medicines (furosemide and digoxin) to start taking. The dad asked if the doctors could fix his son; if they could do surgery. She looked up, exasperated. “Do you want me to tell the truth? Because I don’t know if you’re going to listen to me; do you want the truth or not?” He said, looking away, “yes, I would like the truth.” She said, challenging him, “he is really sick and we’ve lost 3 years, haven’t we? Si o no? We’ve lost 3 years, si o no?” German responded, with a look on his face like a 16-year-old being chastized by his parents for staying out too late, “si”. She continued, “so I don’t even know; do you want him to have surgery or not? Do you want him to get better or not?”. German responded that if the medicine she was going to give would be enough, he’d like to just do that (in her chastizing of him, she hadn’t given herself the chance to explain what his condition was, what role the medicine would play, or the neccesity of surgery). I wish she’d taken this opportunity to clarify his condition and the treatment options but it was like she wanted German to feel pain for not having taken full advantage of an opportunity he was once given and fear for his child’s life, so that only at the last minute he could be granted the gift -- by her, no less -- of news that, because they finally listened to her, Herlyn would be able to have his surgery and his life would be saved. She said she couldn’t tell him whether Herlyn could have surgery or what would happen to him. He’d just need to take these two medicines and come back in 2 months and they’d see.
I was enraged. With that level of information, it was all-together likely that German would decide there was no sense in coming back (remember the 4 hr bus ride and a day off work) since 1) it sounds like they are unlikely to be able to help Herlyn 2) they will mistreat me again 3) they are mean people who I can’t trust to treat my child well and do an honest job with the surgery. I was also concerned that he’d see Herlyn doing better with the meds and falsely assume the meds could sustain him forever.
The cardiologist did a very cursory physical exam (less than 3 minutes) during which she pointed out to the dad with indignation that, because of all the delay, his chest had remodeled and looked like a barrel. She wrapped up by writing a prescription for labs (including a repeat of the VDRL -- maybe just one unnecessary test but likely the cost of 3 days of work, or the equivalent of $850 for someone earning $100K a year, like many people in the States) and giving a partially used bottle of digoxin another patient no longer needed. She said, “you can either use this used bottle or buy your own, what do you want to do?” I answered for him, “we’d like the used bottle, thank you” and then turned to him to explain that it would still work just as well.
The consult ended. I followed the cardiologist out of the office and stopped her. “Excuse me for troubling you but would you please explain what it is the boy has wrong with his heart?” She hesitated like she couldn’t believe I had the gall to ask. She responded, “to you?” as if to say, "what would be the use in explaining it to the dad but if it’s to you, well if you insist.” She asked me to follow her back to the office (I signalled to the dad that he should come, too). She explained hastily, punctuated by my questions, that Herlyn had an 11mm PDA with left to right flow, a small VSD, and small non-obstructive lip of subaortic tissue, dilated left chambers with good systolic function, a normal right ventricle, and an unclear pulmonary artery pressure. I told her I would like to be able to pass as much accurate information on to the doctors in San Lucas who would be caring for him after I left so I’d like to know what his chances were for surgery. She said, “well, he definitely has to have surgery and he can’t wait beyond the end of the year. When he comes back in two months, if he’s well, we’ll do a cath for PA pressures and he might be able to stay here for a surgery at that point.” She turned to the dad “make sure he’s well for that visit” (as if it’s a matter of choice for the dad). I clarified that we should come whether he is sick or well and she said, “of course”. So here, she clearly had it in her mind that he would be getting surgery within the next 9 months but somehow didn't think the dad deserved to hear that.
That ended our visit with the cardiologist and Emilio walked us out. He was great and explained to the dad what was wrong with Herlyn’s heart and what role the medicines would play. When we got into the car, I apologized to German for the way he was treated by the cardiologist. He told me that, yes, it was very hard to be treated like that and it was clear to him that she is prideful and does not practice medicine for the joy of it or for the patients but to feel powerful. He said she was the same cardiologist who had seen Herlyn as a baby and always gotten angry with them for him being sick. He also told me how appreciative he was for Emilio who, he said, clearly is a doctor who loves his work and his patients (he had at most 4 minutes with Emilio). Later in the car ride, I overheard German explaining to the driver what was wrong with Herlyn. He described how he had an extra hose connecting two normal hoses and that this hose would need to be closed. But the hose was outside the heart so that meant the surgery wouldn’t be quite as risky. He clearly got this explanation from Emilio in their very brief exchange. It emphasized to me that it doesn’t take time to treat patients well or educate them; it just takes basic human decency and respect.
Despite being a doctor, comfortable in a hospital, and able to understand Herlyn’s condition, I left the cardiologist’s office feeling small, robbed of my ability to advocate for my patient. I felt like anything I did to contradict or question could compromise his care (for the injury it might do to the doctor’s pride). I can only imagine how small the dad felt. I’m glad Herlyn is probably too little to feel these things. I’m also glad that it appears Herlyn has a lesion that will let him recover from him heart failure. I wish the cardiologist had the same good prognosis for her heart.
There are many emotions that circle around this case for me; many questions, mostly ethical. One is that I have to admit that I’m not particularly fond of this dad or, really, of Herlyn’s mom either. I find myself standing in judgment of them and wondering if I’m wrong for feeling the way I do. The dad is aloof and prideful. He doesn’t greet me when I come to visit them (a VERY rare -- really unheard of -- afront in this culture), he cuts me off when I’m talking in order to correct me or contradict me. Even when we got back from our journey to the City, he just got out of the car and thanked the driver and walked off. The parents have many stories as to why their child hasn’t gotten care to date but all are external reasons: the Parrochia has never helped us, the doctors chastize us. At some level, I understand there are reasons for them to not trust the system, the doctors, white people. But I also believe the dad lets his own pride get in the way of his son's care and I believe he could set aside some quetzales for his son but he is adamant that there is no money. Herlyn deserves a cure no matter what his parents are like and his parents surely deserve to be cut a lot of slack. But how much slack do I cut them (and who am I that I have the power to determine their son's outcome)? Herlyn will need to travel to Solola (40 min) for his blood tests in 5 weeks. Do I have them go on their own? Do I pay for the transportation, the tests? He will need to return to UNICAR in 6 weeks. Do I go? Do I set up the ride? What if I decide they need to do it on their own but they don’t do it and then I’m gone and unable to help? Wouldn’t Heryln be the unnecessary victim of that? I know it’s worth it to me to do it all, hands down. But am I causing some harm unwittingly by not insisting that the parents start to take more responsibility?
I joined German and Herlyn for their consult. I pulled out my notebook to write down important pieces of information but ended up just writing down notes on the inappropriate things the cardiologist said. After having been in Guatemala for a year, I was not surprised that the patients were talked down to and that very little information was shared with them but there’s nothing more impactful (nor anger-inspiring) than to witness it directly.
The cardiologist started by asking why he didn’t show up for his appointment some 3 years ago. Dad explained that he, himself, had required two surgeries (knee and appendix) at the time of that last appointment and then he lost his IGSS and couldn’t afford the visit. I have heard several different versions now of why they didn’t keep going to their appointments so, while I’m sure the above is true, there were likely other factors playing in, not the least of which dad later explained to me: he was tired of always being chastized by the doctors there for his son being sick (he says Herlyn was always sick and they would get mad at German and his wife for not having taken him to a doctor for each of the illness. He was sick for their last appt and German decided not to send him and thereafter all the rumors I summarized in Part I started taking their toll; he just never could get up the will to go through the process all over again - for financial reasons, fear, pride, etc).
So the appointment kicked off with the cardiologist chastizing him for having endangered his son’s life by failing to bring him back. She then said she was going to give him two medicines (furosemide and digoxin) to start taking. The dad asked if the doctors could fix his son; if they could do surgery. She looked up, exasperated. “Do you want me to tell the truth? Because I don’t know if you’re going to listen to me; do you want the truth or not?” He said, looking away, “yes, I would like the truth.” She said, challenging him, “he is really sick and we’ve lost 3 years, haven’t we? Si o no? We’ve lost 3 years, si o no?” German responded, with a look on his face like a 16-year-old being chastized by his parents for staying out too late, “si”. She continued, “so I don’t even know; do you want him to have surgery or not? Do you want him to get better or not?”. German responded that if the medicine she was going to give would be enough, he’d like to just do that (in her chastizing of him, she hadn’t given herself the chance to explain what his condition was, what role the medicine would play, or the neccesity of surgery). I wish she’d taken this opportunity to clarify his condition and the treatment options but it was like she wanted German to feel pain for not having taken full advantage of an opportunity he was once given and fear for his child’s life, so that only at the last minute he could be granted the gift -- by her, no less -- of news that, because they finally listened to her, Herlyn would be able to have his surgery and his life would be saved. She said she couldn’t tell him whether Herlyn could have surgery or what would happen to him. He’d just need to take these two medicines and come back in 2 months and they’d see.
I was enraged. With that level of information, it was all-together likely that German would decide there was no sense in coming back (remember the 4 hr bus ride and a day off work) since 1) it sounds like they are unlikely to be able to help Herlyn 2) they will mistreat me again 3) they are mean people who I can’t trust to treat my child well and do an honest job with the surgery. I was also concerned that he’d see Herlyn doing better with the meds and falsely assume the meds could sustain him forever.
The cardiologist did a very cursory physical exam (less than 3 minutes) during which she pointed out to the dad with indignation that, because of all the delay, his chest had remodeled and looked like a barrel. She wrapped up by writing a prescription for labs (including a repeat of the VDRL -- maybe just one unnecessary test but likely the cost of 3 days of work, or the equivalent of $850 for someone earning $100K a year, like many people in the States) and giving a partially used bottle of digoxin another patient no longer needed. She said, “you can either use this used bottle or buy your own, what do you want to do?” I answered for him, “we’d like the used bottle, thank you” and then turned to him to explain that it would still work just as well.
The consult ended. I followed the cardiologist out of the office and stopped her. “Excuse me for troubling you but would you please explain what it is the boy has wrong with his heart?” She hesitated like she couldn’t believe I had the gall to ask. She responded, “to you?” as if to say, "what would be the use in explaining it to the dad but if it’s to you, well if you insist.” She asked me to follow her back to the office (I signalled to the dad that he should come, too). She explained hastily, punctuated by my questions, that Herlyn had an 11mm PDA with left to right flow, a small VSD, and small non-obstructive lip of subaortic tissue, dilated left chambers with good systolic function, a normal right ventricle, and an unclear pulmonary artery pressure. I told her I would like to be able to pass as much accurate information on to the doctors in San Lucas who would be caring for him after I left so I’d like to know what his chances were for surgery. She said, “well, he definitely has to have surgery and he can’t wait beyond the end of the year. When he comes back in two months, if he’s well, we’ll do a cath for PA pressures and he might be able to stay here for a surgery at that point.” She turned to the dad “make sure he’s well for that visit” (as if it’s a matter of choice for the dad). I clarified that we should come whether he is sick or well and she said, “of course”. So here, she clearly had it in her mind that he would be getting surgery within the next 9 months but somehow didn't think the dad deserved to hear that.
That ended our visit with the cardiologist and Emilio walked us out. He was great and explained to the dad what was wrong with Herlyn’s heart and what role the medicines would play. When we got into the car, I apologized to German for the way he was treated by the cardiologist. He told me that, yes, it was very hard to be treated like that and it was clear to him that she is prideful and does not practice medicine for the joy of it or for the patients but to feel powerful. He said she was the same cardiologist who had seen Herlyn as a baby and always gotten angry with them for him being sick. He also told me how appreciative he was for Emilio who, he said, clearly is a doctor who loves his work and his patients (he had at most 4 minutes with Emilio). Later in the car ride, I overheard German explaining to the driver what was wrong with Herlyn. He described how he had an extra hose connecting two normal hoses and that this hose would need to be closed. But the hose was outside the heart so that meant the surgery wouldn’t be quite as risky. He clearly got this explanation from Emilio in their very brief exchange. It emphasized to me that it doesn’t take time to treat patients well or educate them; it just takes basic human decency and respect.
Despite being a doctor, comfortable in a hospital, and able to understand Herlyn’s condition, I left the cardiologist’s office feeling small, robbed of my ability to advocate for my patient. I felt like anything I did to contradict or question could compromise his care (for the injury it might do to the doctor’s pride). I can only imagine how small the dad felt. I’m glad Herlyn is probably too little to feel these things. I’m also glad that it appears Herlyn has a lesion that will let him recover from him heart failure. I wish the cardiologist had the same good prognosis for her heart.
There are many emotions that circle around this case for me; many questions, mostly ethical. One is that I have to admit that I’m not particularly fond of this dad or, really, of Herlyn’s mom either. I find myself standing in judgment of them and wondering if I’m wrong for feeling the way I do. The dad is aloof and prideful. He doesn’t greet me when I come to visit them (a VERY rare -- really unheard of -- afront in this culture), he cuts me off when I’m talking in order to correct me or contradict me. Even when we got back from our journey to the City, he just got out of the car and thanked the driver and walked off. The parents have many stories as to why their child hasn’t gotten care to date but all are external reasons: the Parrochia has never helped us, the doctors chastize us. At some level, I understand there are reasons for them to not trust the system, the doctors, white people. But I also believe the dad lets his own pride get in the way of his son's care and I believe he could set aside some quetzales for his son but he is adamant that there is no money. Herlyn deserves a cure no matter what his parents are like and his parents surely deserve to be cut a lot of slack. But how much slack do I cut them (and who am I that I have the power to determine their son's outcome)? Herlyn will need to travel to Solola (40 min) for his blood tests in 5 weeks. Do I have them go on their own? Do I pay for the transportation, the tests? He will need to return to UNICAR in 6 weeks. Do I go? Do I set up the ride? What if I decide they need to do it on their own but they don’t do it and then I’m gone and unable to help? Wouldn’t Heryln be the unnecessary victim of that? I know it’s worth it to me to do it all, hands down. But am I causing some harm unwittingly by not insisting that the parents start to take more responsibility?
Herlyn and his dad (after 2 weeks on furosemide and digoxin)
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