Patient-centered care... but bigger.

I stood next to her with my hand on her back as she watched the doctors take turns trying to revive her five-year-old son. I didn’t know what else to do. There wasn’t much else to do. I was in the back room filling out my charts when they called the code, and I didn’t hear it. Another nurse told me as I was chatting with another nurse and preparing for noon rounds, so I dropped what I was doing, walked quickly to the rear of the ward and took my place by the mother’s side. The child was revived after 15 minutes of CPR and intubation, and I stepped out to grab suction supplies for his new endotracheal (ET) tube. He coded again while I was away. He came back, then was gone again. Came back, gone again. He didn’t come back that time. The doctors explained to his mother what happened and then left her to be alone with her child. I glanced over to the room a few times over the next few hours while rounding with my other patients, and saw her sitting at her son’s bedside, her body draped over his.

I’ve seen death before, but this is the first time it was a patient I had assessed earlier in the day - who I consoled when he cried and pushed away his nasal cannula (he didn’t like the straps in front of his neck, only behind it), planned to reinsert an IV line he had pulled out earlier that morning, talked to his mom about the plan for the day and how we would go about getting the medications her son needed for his TB treatment. They had a bottle of rifampicin, but it didn’t make sense to start giving that without at least two of the other medications in the HRZE regimen (rifampicin, ethambutol, pyrazinamide, and isoniazid). Actions that seemed pretty inconsequential by the time the afternoon rolled around. He didn’t look good that morning, but I’ve seen worse pull through and he had enough spirit to have anybody convinced he’d make it. Apparently the doctors were in there talking to him and his mom when the kid just dropped. Nobody saw it coming. 

He was presumed to have HIV because it is uncommon to have active TB infection, let alone disseminated TB, at such a young age. This meant that he became one of the few patients for which touching or interacting with him merited a face mask and gloves. So many other patients would have benefitted from such precautions, but attitudes and resources are such that gloves are rarely used even when coming into contact with body fluids. Unfortunately, this also meant that healthcare workers (HCWs) were likely to interact with him less frequently, more for the concern of catching something from him than the other way around.

According to a 2017 meta-analysis, HCWs are up to twice as likely as their patient population to contract TB (Uden, Barber, Ford and Cooke). I haven't been able to find HCW TB prevalence statistics for the Philippines, but the overall TB prevalence in the National Capital Region of the Philippines is 1358/100,000 (Philippines Department of Health [PDOH], 2018b). Unfortunately, most units only have one or two isolation rooms that are reserved for only the most severe cases, so the odds are not in the HCWs' favor unless they wear an N95 throughout the ward on a daily basis. To an outsider like myself, it actually seems more stigmatizing to choose to wear a mask around the patient who has HIV while failing to do the same around many other patients in an open ward.

In the US, HIV testing for pregnant parents is compulsory and a baby born with HIV is considered a sentinel event - something that should never happen if the system is working the way it should (Panel on Treatment of Pregnant Women with HIV Infection and Prevention of Perinatal Transmission, 2017; Whitmore et al., 2012). In the Philippines, HIV testing for pregnant mothers is optional and often declined because there is still great stigma here with HIV infection being perceived as a moral failing in one way or another - why should I be tested if I am not a “prostitute” or “drug addict”? Antenatal care and facility birth attendance are increasing, but still not where they would need to be to catch infection in the most vulnerable populations and be able to intervene before birth. The result is more babies born with HIV who may meet the same circumstances as my sweet 5-year-old patient: 25% of the 143 mother-to-child transmission (MTCT) diagnoses since recording began in 1984 were made in 2017 (PDOH, 2017) and half of all MTCT cases have been recorded over the last five years (PDOH, 2018a) - actual infection rates are probably higher since testing isn't compulsory.

The intersection between TB and HIV comes, as I alluded to above, by the fact that a latent TB infection can become active when the host's immune system is compromised; this means that people living with HIV (PLHIV) are at much greater risk for developing active TB. The World Health Organization (WHO) estimates that one million PLHIV fell ill with TB worldwide in 2017, PLHIV are 21 times more likely to fall ill with TB than their immunosufficient counterparts (WHO, 2017). TB is the leading cause of death among PLHIV (WHO, 2017). I wasn't able to find statistics on TB/HIV co-infection in the Philippines.

I suppose the policies and practices in place here are reflective of an HIV epidemic in its nascency in a setting with limited resources. As an American who has studied the HIV epidemic in the US and worked with populations affected by the HIV epidemic in both the US and Tanzania, it is difficult to see the way things are here and also be accepting that the Philippines has to have its own path and find its own way in stemming the tide. The only reason attitudes and policies have even begun to change in other places from the sheer necessity of doing so in order to stem the tide of the epidemic; entire cultural mindsets about sexual practices and societal class don't generally just up and change for the fun of it. I suppose it's the macro-equivalent of patient-centered care and practicing autonomy: as a nurse, I am only a support in as much as a patient desires me to support them and, as a global health nurse, I am only a support in as much as the local staff desire me to support them - which may be only a little or not at all. But if I have learned anything about the nurses, doctors, allied health workers, and administrators here, I know that if or when the time comes for things to change, they will absolutely make it happen.

References:

Panel on Treatment of Pregnant Women with HIV Infection and Prevention of Perinatal Transmission. (2017). Recommendations for use of antiretroviral drugs in pregnant HIV-1-infected women for maternal health and interventions to reduce perinatal HIV transmission in the United States. Retrieved from https://aidsinfo.nih.gov/contentfiles/lvguidelines/glchunk/glchunk_146.pdf

Philippines Department of Health. (2017a). HIV/AIDS & ART Registry of the Philippines, January 2018. Retrieved from https://drive.google.com/drive/u/0/folders/17pjGyeO2X4ACnsNMXSJDyFflxjVb23nR

Philippines Department of Health. (2017b). HIV/AIDS & ART Registry of the Philippines, December 2017. Retrieved from https://drive.google.com/drive/folders/0BwpvfQGzXpg8bGJBVEFRSWNpQ00

Philippines Department of Health. (2018b). National Tuberculosis Prevalence Survey 2016 Philippines. Retrieved from http://ntps.healthresearch.ph/content/2016-ntps-results

Uden, L., Barber, E., Ford, N., & Cooke, G. S. (2017). Risk of tuberculosis infection and disease for health care workers: An updated meta-analysis. Open Forum Infectious Diseases, 4(3), 1-7. https://doi.org/10.1093/ofid/ofx137

Whitmore, S. K., Taylor, A. W., Espinoza, L., Shouse, R. L., Lampe, M. A., & Nesheim, S. (2012). Correlates of mother-to-child transmission of HIV in the United States and Puerto Rico. Pediatrics, 129(1), e74-e81. doi:10.1542/peds.2010-3691

World Health Organization. (2018). 2017 TB-HIV fact sheet. Retrieved from http://www.who.int/tb/areas-of-work/tb-hiv/tbhiv_factsheet_2016.pdf?ua=1