This is a message that I sent out to all of our project staff in November, I thought that others might appreciate it.
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Almost by the definition of what public health means, we who work to improve health systems tend to be somewhat removed from the immediacy of patient care. We know, or hope, that we are saving lives through our work, but we rarely see the people whose lives are saved or lost in relationship to our efforts.
On Tuesday I was in a situation that unavoidably put a face on the Better Health Services Project and the Cambodian health system as a whole. While visiting Sisophone Hospital we came across an 11 year old patient, semi-comatose, being tended to by his mother. He had arrived that morning and was deathly ill. He was HIV+ and according to records his mother brought had been on ART for 5 months. Looking at him this was hard to believe. He was as emaciated as a concentration camp victim. He had a severely swollen belly (ascites, or fluid in the peritoneal cavity) and marked edema of his hands, feet, and face (to the point that his eyes were swollen almost shut). Every other part of his body revealed no subcutaneous fat and almost no tissue. He was panting in an effort to get enough air into his lungs and the only treatment offered by the hospital was the administration of oxygen through a cannula. I have attached a picture of him so that you can all see how ill he was.
A brief physical examination revealed that his left lung space was completely filled with fluid (empyema) which made breathing difficult. His stomach was so distended that it was difficult to feel the organs underneath, but he appeared to have a significantly enlarged liver. The mother (also HIV+ and on ART) initially reported that he had been active until 3 days previously (given the level of malnutrition it is difficult to imagine that he could have been very active) which would have suggested (perhaps) Pneumocystis pneumonia - PCP), it later came out that he had been getting sicker over the past 3 or 4 weeks, and the underlying cause was TB.
In any case, he was a severely ill child on the brink of death, and he was lying in a hospital ward that was incapable of giving him the treatment he needed. We urged the Director of the hospital to transfer him to Angkor Hospital for Children, he resisted and instead wanted to keep him overnight and then, possibly, transfer him to Mongul Borey. After some discussions and assurances via telephone from our HEF team in Phnom Penh that the ambulance transfer would be paid for by the HEF operator, he was transferred to AHC.
There he received a chest drain, but the pus was so thick that it didn’t flow well so the pleural cavity did not clear. His breathing became worse and he had to be intubated and put on a mechanical ventilator (i.e. a machine was breathing for him because he lacked the strength to breathe for himself). The pus from his chest cavity came back highly positive for TB. An ultrasound showed that portions of his lungs had died due to the TB infection. He was too weak to undergo an operation, so they could not clean up his pleural cavity surgically. His infection overwhelmed him, and 27 hours after admission to Angkor, and about 30 hours after we had first seem him, he died.
It is easy to say that this child was very sick (true) and that it is not surprising, and not a system failure, that he died. But this child can be seen in a different light. More than two thirds of untreated HIV+ children die before the age of 2. Those that survive are considered “hardy”, they have unusually strong immune systems that can fight off the HIV virus in a way that most people cannot. But they can’t do it forever. The child had fought all by himself as hard as he could against a very serious disease, and now he needed help that he didn’t get.
Now children die every day in every country in the world. But this child was particularly poorly served by the health system and I think it is instructive for us, as a health systems project, to reflect on how each of our technical units has some stake in the death of this child. I’ll go in alphabetical order since it is impossible to quantify the importance of the various parts of the system in contributing to the overall system failure represented by this child.
Clinical Services: CS comes first alphabetically, and it is perhaps the easiest failure to see since, until he arrived at AHC, the child received very poor care. There is no doubt that the project has enormous work to do to increase the competence of Cambodian clinicians. However, it should be noted that the child did not arrive in Sisophone Hospital until Tuesday morning at which point even the best care in the world probably wouldn’t have saved him. There may have been failures in clinical care in other health facilities, but we would need to conduct an investigation to confirm this. There were many points in this child’s life where he would have been well-served by good clinical care, but he didn’t die on Wednesday because of poor care received over the previous days.
Health Financing: The family was a Health Equity Fund beneficiary family. There were some problems around the understanding of what the HEF would or wouldn’t pay for in terms of referrals (also seen in BTB Hospital earlier on the trip), and it is likely that he would not have been transferred absent out intervention, and he certainly would not have been transferred to AHC. But more importantly, it seems likely that the lack of money played some role in the mother waiting so long to bring her child to the hospital. Perhaps she had been forced to pay under the table payments, maybe she didn’t think that services would actually be free or transport reimbursed, but whatever he thinking she waited far too long to bring her child in and the costs involved almost certainly played a part in her decisions.
Health Information Systems: The mother was carrying a number of patient records (notably the ART booklet and the child health card), so at one level we were able to identify when ART had been started and what drugs the child received (the mother had also brought all of the pill bottles). However, the HIS had also completely lost track of this child, newly started on ART. An ART patient is supposed to be checked on regularly in the first months of care, and then followed up by a home-based care system. Neither appears to have happened here, instead the child was counted as a “success”, another pediatric ART patient, and then ignored to the brink of death. The HIS should have been able to pick this up, but it didn’t.
Health Systems Management: Somehow a child, who was desperately ill in a manner that was clearly visible even to an untrained eye, fell through the cracks of the system. Then, after admission to the hospital, was incorrectly managed. There was little to no communication between the hospital management and the HEF management. Neither was willing to take “the risk” of transferring the patient, more worried about unallowable costs than a patient’s life. The different parts of the health system (hospital, OD, health center, and HBC) could not have been communicating or the child would not have ended up this sick.
Infectious Diseases: The child died of the effect of 2 infectious diseases, HIV and TB. The first receives about half of all of the money spent on the public health care system in Cambodia, the second receives another big chunk of funding. The child lived in an area where both diseases are known to be prevalent, but the hospital was unable to clinically manage the case. And the condition of the child upon admission demonstrates that he wasn’t being managed correctly in the 5 months previously either. This is a failure of the two biggest “vertical” programs in the country.
MNCHN: Of our technical units MNCHN is perhaps the least involved with this specific case since the child was 11 years old and outside of the normal range of child health interventions. However, a well-functioning well-baby system would likely have prepared the mother better to take care of a sick child, no matter what the age. Attention to growth monitoring in early life might have prepared both the mother and the caregivers who saw the child during the months where he was wasting away to realize that severe weight loss is a clear (though non-specific) indicator an underlying health problem.
So all of us on this project have a role to play in saving the lives of children like this one. We can’t succeed all of the time, but we need to look at the cases where we fail honestly and we need to learn from them, so that we can serve future patients better. I don’t really know why this particular child has affected me so much (an American doctor at AHC said that, after 4 years of seeing kids die, he rarely cries anymore, but that he did after this case), but I, and we, need to learn from this experience and we need to use it to remember why we do what we do. We work to try and save people’s lives, or to ease their suffering. Remember that when you’re asked to put in extra hours over the weekend or you receive a particularly annoying request to do something that you think is not necessary (whether it be from BHS management, USAID, or the MOH J )
The key lesson: The health system is not an end in itself; it is a means to better health outcomes.
