On the way to the office of the principal of the Medical College and Hospital, I was abruptly met by a laboratory technician who also doubled as an office assistant. With considerable eagerness he informed me that there was a case of "open AIDS" in the general ward, and asked whether I would like to see the patient. Before I could really think through the consequences of such a visit or what I would have to say, our mutual sense of curiosity led us in the direction of the general in-patient wards. After one false identification in the men's ward, we finally located the patient in the female ward. On the way, amidst the tremendous excitement, I was considering which of the opportunistic infections the patient might have and whether I should be rushing along to see her without taking any precautions like using a face mask. Before I could resolve this dilemma, I was at her bedside in a ward with twenty other patients. Seeing the attending doctors without any masks did relieve some of my anxiety about catching an air borne infection.
The patient was lying curled up in bed, with her husband and sister in attendance. I asked her what was troubling her. In a very low and pained voice she informed me that there was a fire in the region of her stomach. At the same time was, in a very clinical and professional manner, the attending doctor was telling me that the blood test had just come back and that she was HIV positive. They had diagnosed her as suffering from acute Cytomegalovirus (CMV), meningitis, and other complications indicative of a white blood cell (with CD4 receptors) count of 100/milliliter or less. They had begun treatment, which they anticipated would last 12-14 days. While some part of my brain was parsing all the medical information, what held my attention were the patients eyes and overall demeanor. The eyes were hollow and vacant, as if life had already been drawn out of her. The face seemed somewhat puffed up, with an undefined quality that made it difficult to look at and which haunts me even today. Since I had nothing to offer in terms of medical advice, I stepped back to talk to the two student doctors, Bharat and Veena.
The doctors were very composed and handling the patient as if she was suffering from any one of the familiar diseases that had brought the other patients in the ward to the hospital. There was also a sense of excitement and curiosity as this was undoubtedly a new experience. Bharat told me that she had been brought in yesterday, they had ordered a blood test, and on finding her HIV positive, had questioned her husband. The medical history he gave was that she had had four children, boy 18, girl 16, boy 14, and girl 11. She had received blood transfusion during surgery, on two occasions, one eleven years ago and again about six years ago. She had started being very sick about 3-4 weeks ago and they had taken her to the hospital in the small town nearest to them. There she had been admitted as an inpatient and spent 18 days. The doctor had failed to diagnose the disease, so finally they had brought her here. Bharat was suspicious of the details and thought that the infaction may have come through the husband even though he was still healthy.
Bharat, Veena, the patient's husband and sister, and I went into a side room to talk. The contrast between the patient and her sister was striking. The sister had a beautiful face, a radiant skin without blemish, and lively eyes. I was grappling with the difference while the husband reiterated the medical history he had given before. Before I knew it, and in part due to my childish enthusiasm, I was faced with counseling the family.
The husband said he had been told that his wife had AIDS, and wanted to know if she would get well. Fumbling for words I informed him that it was likely that she would recover from this particular infection but without anti-retroviral therapy to control HIV she would be sick again very soon and the best guess was that she had 3-6 months to live. Bharat and Veena nodded their approval of these statements, while the sister began crying. I assured her that the hospital would give her sister the very best care but the disease was one that no one in this city, India, or the whole world could cure. In a meek and low voice the husband asked if this was the disease they had heard of on the TV. I could barely open my mouth to say yes.
With a great deal of inner consternation and hesitation the husband asked whether he should bring his wife back to the hospital if she fell sick again. The sister broke down at this point and, while I was grappling with what to say as underlying the question was clearly his fear of how to deal with the financial hardship of hospitalization, he asked the sister to leave the room. I looked at Bharat and Veena for inspiration, but their expressions were of no help. Slowly, Bharat told him that the hospital would care for his wife if she did fall sick, but it was clear to me that he was not thinking of the financial hardship. At this point I took it upon myself to tell him the facts. Yes the hospital would take care of his wife if and when she fell sick, but without the anti-retro viral drug therapy there was nothing they could do to change the course of the underlying disease -- the HIV infection. They could, perhaps, buy her an extra month with excellent hospital care for the opportunistic diseases but he should weigh that against the costs. She may be equally well, or even better, served at home by their love and care during her last months. Bharat and Veena nodded their heads in agreement. This was our best analysis of the situation, and now the decision was his -- hospitalization or home care. In days to follow I have had to come to terms with the question whether I was wrong to give this advice?
The financial consideration that led me to this course of advice were the following. The husband worked in a foundry earning about Rs. 3000 per month. He had already paid for 18 days of hospitalization prior to coming here, and was looking at 14 more days of expensive treatment. I estimated that the combined cost of this care alone and of missed wages, etc., would be between Rs. 20,000 to 30,000. Every successive hospitalization would lead to similar cost. How would they pay for such hospitalization costs? It was unlikely that the family had savings of this magnitude. They would therefore have to resort to taking loans from loan sharks who charge prohibitive interest rates of up to 100 percent. Very often families in such debt situations are forced to sell their children to either the sex industry or for bonded child labor. Therefore, how does one decide between the best possible care for a loved one versus the ruin of the rest of the family and possible victimization of the children? It is clear that society will have to repeatedly grapple with such ethical questions as the number of HIV+ persons advancing towards the final stages of AIDS increase.
The last question we discussed was who in the family should be tested for HIV. The husband raised concerns about doing the test. The family wanted to be certain and to have the mental satisfaction. The attending doctor had recommended all be tested -- the husband and the four children. Again the cost (Rs. 450 per person) came to my mind. Since the youngest child was eleven and all of them were very healthy, and considering the low risk of transmission from mother to them while tending their cuts and bruises, I did not think it necessary to add the children to the list and told him so. The husband definitely, considering that he had sex with his wife up to three months back. The question therefore is how does a doctor factor in the indirect consequences of the financial hardships versus the mental satisfaction that a negative result would give in such low probability cases?
As we got up to leave, the husband thanked me for being truthful and for informing him of the reality. Bharat, Veena, and I perceived a certain calm in his manner now that he knew the situation. He reiterated that he would provide all the love and care for his wife, and we, that the hospital would do its best. For me it was difficult to break away as we had not offered anything positive. The contrast between the patient and the sister, death and life, had stunned me and still reappears in my sleep. Bharat thanked me for a wonderful lesson in dealing with the situation. Only then did the full irony of the situation hit me -- I, a total medical novice who until 50 days ago was as ignorant of the disease as any person in the street, was seeing an AIDS patient for the first time and giving advice expected from a professional.
There are many other questions that still haunt me. Had we been successful in convincing the family that there was no cure for HIV and that they should not run around to quacks looking for miracle cures and wasting more money?
In this case the opportunistic disease was CMV. What if it had been tuberculosis? How would and should the hospital deal with it? Keep the HIV patients in the same general ward and hope that none of the other patients contracted TB? The other side of the coin is whether the patient spending 14 days in the general ward with essentially no immune system left, exposed to whatever infectious diseases the other patients had, was better off at home? The family did not have the financial means to keep her in a private room, and the hospital had no way of offering one even if they were sympathetic due to the patient load. Are there resources available to keep HIV patients with tuberculosis in isolated separate general wards specific to such infection?
This is but one example of the social and medical cost heaped upon us by the HIV/AIDS pandemic. We will increasingly be faced with similar gut wrenching stories. How will we keep our sanity when these stories become millions of similar stories, all with the same tragic conclusion? Our only hope is for each one to understand the full dimension of the pandemic and to contribute a little of their time and means to stop further spread and to help those already afflicted.
Rajan Gupta