Thank you to so many of you who called or emailed me after reading my most recent entry, “horrible.” I have been meaning to write a follow-up and now that I’m home -- in Montana -- for the holidays I have a little time to reflect and even more time to post an update.
After Roman passed away, I cried for a much of the next two days. Angel couldn’t have been a better support, coming in to check on me, telling me how hard it can be working with “mi gente”, and telling me that it’s just not healthy to be too sad. Friday night I skipped dinner and he hurried into my room right at 6pm (dinner time), relieved that he caught me in time to warm me that there are lots of things I shouldn’t eat while being so sad. All I can remember is avocado. It turns out nursing women aren’t supposed to eat avocado either, according to local wisdom. Maybe that’s why there are so many avocados laying around on the ground. Anyway, he really was kind. On Tuesday, just three days after Roman passed away, Roman’s mother and a friend brought Jose in for a swollen penis. I was working upstairs with the health promoters and they asked to see me. I was thankful for the chance to see them again and check in. They were being strong and doing ok but Grandmother was really suffering, they said. I put Jose on antibiotics and asked if it would be ok if I visited them at home the next day to check on him. I told them I recognized it might be hard for Grandmother to see me but they said it would be really nice if I came by.
I mentioned to Angel I’d like to visit them and he very kindly offered to accompany me. It was really great to have his company, not to mention his skills in finding their house. Home visits in Guatemala are one of my favorite things for many reasons. First, it is really interesting to see where people live; it gives so much more context. Second, it feels like “the way medicine should be”, a doctor being as supportive as possible to the patient rather than making sick people always travel and wait in long lines to be seen. Three, the communication seems so much more horizontal and less vertical. They invite you in and you are thankful to them while you answer questions and they are thankful to you.
Anyway, back on track. As usual, the best we could do in finding their house was get to the house of the best known person in their neighborhood, Professor Thul. The tuk-tuk took us right there. Kids playing in the streets pointed us this way and that until finally, “that’s my grandmother.”. It nearly always goes like that. We knocked on the door and they warmly invited us in. Jose was sleeping peacefully under a mosquito net. They brought out plastic chairs and cokes. I checked on Jose, who was looking better. It was very strange to see him by himself and so oblivious. I asked how Grandmother was doing. She was out checking on a cousin who’d just suffered an abortion and, they told me, couldn’t come back for a day because one who has been around abortions, deliveries, or menstruating women can bring sickness to babies. They said she’d not been eating, had been very tearful, and her diabetes had gone out of control…she even passed out over the weekend and it took a bit to get her back. As I changed Jose, I could hear Angel talking to them behind me. He told them how upset I’d been and how much I’d been worrying about them. They told him how much they’d appreciated all the times I’d cared for the boys and were thankful that they’d always gotten better. They said they knew God had chosen to take him because neither Rafael nor the doctora (me) could find anything wrong with him (that’s not entirely true). It was helpful to hear them talk and to learn that, as devastated as they were, they didn’t blame me. I know it’s selfish to care about that but it was important to me. I also didn’t want them to live their lives feeling like he could have been saved if only a different doctor were there. That may be true (though I pray it’s not) but I think it would be torture for them to think that.
As I joined them in conversation and we finished our cokes, they told us stories from their year, a very difficult one for the whole family. There had been several deaths, some financial troubles, and unsuccessful relationships. They pulled out the one-and-only picture they had taken of the babies. It was taken just three days before Roman died. That is amazing to me. Thank God they had one picture at least. It reminded me that so many families don’t have that. In the picture, Roman and Jose are laying side-by-side. Roman is the bigger one of the two, though both are chubby and look the picture of health, kicking their legs up in the air. They are resting their heads on Guatemalan textiles and have a bible between them. It’s a very beautiful photograph.
We finally said our goodbyes and I told them they had my cellphone and could call me with any concerns, knowing anxieties would be running especially high. As we walked down the path towards the main streets, we saw a woman arriving in a tuk-tuk. I recognized it as the grandmother. My heart was racing but I just had to say hi to her. She collapsed in tears and gave me a big, strong hug saying “my angel is gone. I don’t understand why he had to go. I tried so hard.” I felt she was saying just what I felt. We cried together. Kids gathered around so I took the eggs she was carrying and we went up to the house. We sat and talked some more. She looked really tired and much older in just the week that had passed. But she was very kind to me and it helped so much to process with her and to feel sure that she would make it through, somehow.
I can’t even put into words how much it meant to me to get to see the family again, to visit them in their home and to show how much I was grieving for them. I can’t imagine having been more fortunate in having to go through such an experience to have the family react in the understanding way they did. It could have been so different. And then to have so many of my friends back home share their similarly trying times in medicine … and parenting and other parts of life … it just reminded me of how many wonderful people I have around me.
Wednesday, December 26, 2007
Saturday, December 1, 2007
Horrible
For the first time in my life, my career, a patient of mine, a patient for whom I was solely responsible, died. There are so many emotions swirling around inside me now that I can’t even think straight. It feels odd writing about it publicly but I feel like I have to process it and I also feel like I want to share. I can’t just write the good of this year without the bad.
I have seen several times two twin boys, Roman and Jose, who are now 4 months. They first came to the clinic (and saw Rafael) at 8 days of age when one had a seizure that had been going on all night. He was found to have a glucose of 8. After being stabilized, they were sent to Solola, where the other had several seizures as well, and then to the City where a work-up included a CT showing a head bleed in one but no abnormalities in the other but that’s all I ever could learn about the work-up from the grandmother (who was taking the role of mother). Since then, they have been seizure-free on their phenobarbital and have only come in with several minor illnesses. Two days ago, they came in with one day of fever, vomiting, and diarrhea. Their stool was positive for amoebas. Their urine was negative. I started them on metro and the vomiting stopped but fever continued and was very high (up to 40.8) and persistent. They were fussy but their physical exams were normal and vitals unremarkable otherwise. A CBC yesterday (third day of illness) was fairly unimpressive with a WBC on Roman of 13.5 62%N, 34%L, ESR 6 (they always run an ESR) and a WBC of 11.5 on Jose with a similar diff. I decided they just needed time to turn around but hospitalized them yesterday for observation because of the very high fever. Rafael apparently saw them last night before leaving and didn’t make any changes. According to the nursing notes, Roman’s fevers spiked to over 40 two or three times within 5 hours despite Tylenol and ibuprofen. He was also given neo-melubrina IM twice (not ordered). At 8pm, he began grunting and immediately developed cyanosis. He was given 3L O2 (I assume by blow-by because that’s the way they most often do it) and then immediately developed fixed and dilated pupils. Jose had no further fevers and his diarrhea became minimal and he looked good this morning.
What happened? I don’t know.
I picked up charts this morning, as each day, to review the vital signs. I asked the nurse how the boys were doing and she said, as I looked at Jose’s chart, “Oh, the brother died.” Literally, that was how she told me. She told me she heard he’d had a seizure and then cyanosis but the notes didn’t say that and the mom told me he didn’t seize. There were no heart rates or resp rates or BPs or O2 sats beyond the last Q6 vitals (they don’t do them more frequently even with an order). It’s so hard, with so little reliable information, to know what happened and I really want to know. Could he have had systemic amebiasis (and what is systemic amebiasis like)? Did he seize and obstruct? Was he septic (I don’t think so)?
Going to that bedside to see Jose and talk with the mom was really hard. She was tearful and sad but kind. She asked if she could take Jose home for Roman’s funeral at 3pm. She said Jose had been sighing out of suffering for his brother. It was really, really hard to see Jose by himself without his twin. Their whole life the family will have a constant reminder of that absence.
Do they hate me? Do they think that I mistreated their son and that is why he died? What could I do that would be helpful to them? Should I visit them?
It didn’t help at all that Rafael didn’t come to work today. He didn’t tell me yesterday when we were working together that he wouldn’t be here. That is how things go here. Apparently, he doesn’t tell people he’s not coming because then much of the other staff doesn’t come. I wish he would know that I would appreciate being told if he’s not going to come. There were several adult inpatients. I asked what would happen with them. The nursing assistants (no nurse today) said maybe I could see them (a woman with persistent nausea, vomiting, and vertigo; a man with advanced heart failure; a man with ETOH intoxication).
I went to see the other pediatric inpatients (three others). All had diarrhea. Emotions on the ward were high. All the parents were clearly feeling very stressed, I can only imagine because of having witnessed this terrible loss last night. They were respectful to me but tough. I felt like they really didn’t want me caring for their children and didn’t trust what I had to say. They all wanted to know why we weren’t doing more, faster. The nursing assistants were pretty slow and had missed several of the scheduled meds and needed reminders to give them. I tried hard to push on but really felt the unspoken hostility. And I was feeling my own hostility with the nursing assistants, Rafael, the parents.
One 6-month-old had just arrived with grossly bloody stool and vomiting. His dad wondered why we were waiting for the stool study and wasting time not getting an x-ray or an ultrasound or something. Then they insisted on leaving. They were upset with the IV in his arm which was on TKO (the nurses don’t run maintenance fluids ever; just boluses and TKO) and “solo por el gusto” (just because). The one-year-old who’d come in two days ago with 5 days of fever, cough, and diarrhea being treated with ceftriaxone and metronidazole was much better (initial sats were 70’s) so they wanted to leave, though her diarrhea was still pretty bad. I’ve seen these kids who leave so quickly (nearly all want to leave as soon as there is some improvement) come back near death. I tried to talk them into one more day but couldn’t.
A couple a patients had traveled all the way from an outlying community for the results of stool samples they sent in with Ritu yesterday but the stool had been thrown away because the lab guy didn’t come to work yesterday and the only other lab in town that processes stool also was closed. Only the parents came today without their kids so we couldn’t repeat the sample. So they just wanted treatment with metronidazole for having come so far.
It was a terrible, terrible morning. My hardest yet, by far. I couldn’t go into work this afternoon. Mary and Ritu took a walk. They came upon the family of Roman and Jose leading the funeral procession for Roman, carrying his little, white casket. His mom was being held up by relatives.
I feel like I should go home….home, home. I’m not sure what good I’m doing here in a place where western medicine is so unaccepted by so many people. And where the nursing care is so poor and the ability to evaluate and monitor patients so bad. Could Rafael do a better job on his own? Quite probably. At least as good of a job. I could move to working only in the communities with the health promoters. But I now have clinic patients I follow more consistently and I also value my relationship with Rafael. What do I do about those patients? About the commitment I made to them, to Rafael, to the community, to myself? Given that running away wouldn’t change the awful realities here, is there some better thing I could do to actually make an impact? How will I be able to go back to the hospital?
I have seen several times two twin boys, Roman and Jose, who are now 4 months. They first came to the clinic (and saw Rafael) at 8 days of age when one had a seizure that had been going on all night. He was found to have a glucose of 8. After being stabilized, they were sent to Solola, where the other had several seizures as well, and then to the City where a work-up included a CT showing a head bleed in one but no abnormalities in the other but that’s all I ever could learn about the work-up from the grandmother (who was taking the role of mother). Since then, they have been seizure-free on their phenobarbital and have only come in with several minor illnesses. Two days ago, they came in with one day of fever, vomiting, and diarrhea. Their stool was positive for amoebas. Their urine was negative. I started them on metro and the vomiting stopped but fever continued and was very high (up to 40.8) and persistent. They were fussy but their physical exams were normal and vitals unremarkable otherwise. A CBC yesterday (third day of illness) was fairly unimpressive with a WBC on Roman of 13.5 62%N, 34%L, ESR 6 (they always run an ESR) and a WBC of 11.5 on Jose with a similar diff. I decided they just needed time to turn around but hospitalized them yesterday for observation because of the very high fever. Rafael apparently saw them last night before leaving and didn’t make any changes. According to the nursing notes, Roman’s fevers spiked to over 40 two or three times within 5 hours despite Tylenol and ibuprofen. He was also given neo-melubrina IM twice (not ordered). At 8pm, he began grunting and immediately developed cyanosis. He was given 3L O2 (I assume by blow-by because that’s the way they most often do it) and then immediately developed fixed and dilated pupils. Jose had no further fevers and his diarrhea became minimal and he looked good this morning.
What happened? I don’t know.
I picked up charts this morning, as each day, to review the vital signs. I asked the nurse how the boys were doing and she said, as I looked at Jose’s chart, “Oh, the brother died.” Literally, that was how she told me. She told me she heard he’d had a seizure and then cyanosis but the notes didn’t say that and the mom told me he didn’t seize. There were no heart rates or resp rates or BPs or O2 sats beyond the last Q6 vitals (they don’t do them more frequently even with an order). It’s so hard, with so little reliable information, to know what happened and I really want to know. Could he have had systemic amebiasis (and what is systemic amebiasis like)? Did he seize and obstruct? Was he septic (I don’t think so)?
Going to that bedside to see Jose and talk with the mom was really hard. She was tearful and sad but kind. She asked if she could take Jose home for Roman’s funeral at 3pm. She said Jose had been sighing out of suffering for his brother. It was really, really hard to see Jose by himself without his twin. Their whole life the family will have a constant reminder of that absence.
Do they hate me? Do they think that I mistreated their son and that is why he died? What could I do that would be helpful to them? Should I visit them?
It didn’t help at all that Rafael didn’t come to work today. He didn’t tell me yesterday when we were working together that he wouldn’t be here. That is how things go here. Apparently, he doesn’t tell people he’s not coming because then much of the other staff doesn’t come. I wish he would know that I would appreciate being told if he’s not going to come. There were several adult inpatients. I asked what would happen with them. The nursing assistants (no nurse today) said maybe I could see them (a woman with persistent nausea, vomiting, and vertigo; a man with advanced heart failure; a man with ETOH intoxication).
I went to see the other pediatric inpatients (three others). All had diarrhea. Emotions on the ward were high. All the parents were clearly feeling very stressed, I can only imagine because of having witnessed this terrible loss last night. They were respectful to me but tough. I felt like they really didn’t want me caring for their children and didn’t trust what I had to say. They all wanted to know why we weren’t doing more, faster. The nursing assistants were pretty slow and had missed several of the scheduled meds and needed reminders to give them. I tried hard to push on but really felt the unspoken hostility. And I was feeling my own hostility with the nursing assistants, Rafael, the parents.
One 6-month-old had just arrived with grossly bloody stool and vomiting. His dad wondered why we were waiting for the stool study and wasting time not getting an x-ray or an ultrasound or something. Then they insisted on leaving. They were upset with the IV in his arm which was on TKO (the nurses don’t run maintenance fluids ever; just boluses and TKO) and “solo por el gusto” (just because). The one-year-old who’d come in two days ago with 5 days of fever, cough, and diarrhea being treated with ceftriaxone and metronidazole was much better (initial sats were 70’s) so they wanted to leave, though her diarrhea was still pretty bad. I’ve seen these kids who leave so quickly (nearly all want to leave as soon as there is some improvement) come back near death. I tried to talk them into one more day but couldn’t.
A couple a patients had traveled all the way from an outlying community for the results of stool samples they sent in with Ritu yesterday but the stool had been thrown away because the lab guy didn’t come to work yesterday and the only other lab in town that processes stool also was closed. Only the parents came today without their kids so we couldn’t repeat the sample. So they just wanted treatment with metronidazole for having come so far.
It was a terrible, terrible morning. My hardest yet, by far. I couldn’t go into work this afternoon. Mary and Ritu took a walk. They came upon the family of Roman and Jose leading the funeral procession for Roman, carrying his little, white casket. His mom was being held up by relatives.
I feel like I should go home….home, home. I’m not sure what good I’m doing here in a place where western medicine is so unaccepted by so many people. And where the nursing care is so poor and the ability to evaluate and monitor patients so bad. Could Rafael do a better job on his own? Quite probably. At least as good of a job. I could move to working only in the communities with the health promoters. But I now have clinic patients I follow more consistently and I also value my relationship with Rafael. What do I do about those patients? About the commitment I made to them, to Rafael, to the community, to myself? Given that running away wouldn’t change the awful realities here, is there some better thing I could do to actually make an impact? How will I be able to go back to the hospital?
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