Whom Are You Treating
Sita’s eight month old baby had a brain tumor. In fact it was a very bad brain cancer. From diagnosis to death it usually takes few months. And that is what indeed happened. The whole thing is painful to deal with and one would like to fast forward time, to directly jump at a point, where time has healed most of the trauma. But if you are the treating physician, you are right in the midst of everything. Whether you like it or not, you have to deal with the Inevitable; hour by hour, day by day, and remain sane as the near & dear of the patient drag you with them in their emotional roller-coaster ride.
I remember first seeing Sita as she opened the door of my consulting room walking in with her infant baby in her arms and pushing her other two children in front of her. She must be in her early twenties, disheveled but resolved, thin but agile, worried but in control, which she exercised by admonishing her children to stand quietly behind her as she sat across me.
`Tell me’, I started.
`My baby has tumor in the head. How much will the operation cost?’
She came straight to the point.
We are all taught the etiquette of the ideal patient encounter and how to do the tango to gently bring the patient around to spell out the problems and then take control of the situation without him or her knowing it.
I have practiced neurosurgery for nearly 18 years- as intern, resident and then as consultant. The greatest advantage of these long years of practice is that one gets to do most of the mistakes that are there to make and become wiser by getting burned multiple times. So it took me no time to realize how the plot is laid and what my next move should be.
` Do you have CT scan? Let me take a look’. I said.
She handed over the CT scan to me. I put up the film on the lighted view box. It was clearly a brain-stem glioma, very bad cancer. I could see the dark distorted swollen brain stem, the patchy frond like growth and the enlarged ventricles (the water cavities in the brain) as the tumor has obstructed the waterways. It took me three seconds to know the diagnosis, prognosis and medical plan of management. But I kept on staring at the image for next 5 minutes considering more practical aspects of the management.
As I stared at the scan, Sita felt that I needed some help to understand the problem. So she spelled out the history of illness, and much more! (The medical history was typical and very short. Unfortunately it didn’t have much bearing on what was going to happen) What I was really looking for was to gauge how much she knew, how was she perceiving the problem and how far was she willing to go.
Her disorganized narrative confirmed my assessment of the situation. She came from the nearby slum. She worked as a domestic help in nearby building. Three children. Drunkard husband with no steady job. She had to keep her child with her neighbor when she went to work during the day. Her mother might had helped, but lately she was not keeping well. She noticed the baby not doing well, when he stared vomiting. She had approached a couple of doctors. CT scan was done. One doctor had told her that nothing can be done and baby was going to die. She didn’t like the way he told her. That was not a good thing to say she felt. She thought he said that because he was not a surgeon doctor, he didn’t know enough. The other doctor had told her to admit the child for operation but she did not have enough money then. Now she had borrowed some money for the operation. She was short by some amount but she was trying to get more. That hospital refused to admit without the entire advance. She had heard about me from the people in whose home she worked.
`Will I do the operation? Will I admit and operate with less advance money?’ She would get more money later. Meantime she had bought some medicines for the baby. But the baby was throwing up.
He mind was completely preoccupied with bills, costs and plans how to raise the money.
In my earlier years in practice, I was very naive. I would have told her gravely, that her infant had a bad brain stem tumor. Even if we try everything there is no cure. With heroic measures, baby may survive with extreme disability for few months. But death was certain in near future. I am very sorry and it is indeed very sad, and I can prescribe medicine that she can give to the baby at home. Perhaps she could use that money for her other children. Out of sympathy I would have refunded the money she had paid for my consultation (which was a quite a bit for her).
Over years I have realized it is a very bad strategy. This is what would have happened. I returning the money after this talk had sent her a signal that I didn’t want to treat her baby, because she was poor. I was not interested in treating and most likely that was because I didn’t know how to do the operation. She would have promptly used that refunded money to go to other physician, who might have continued treating the child with IV fluids, antibiotics till she exhausted all her money and then he would have broken the bad news. At this point, she would have come to the conclusion that this doctor at least tried and she also did whatever she could and finally both have to accept the fate and then would have taken the child home. So in short, the child would have died and she would have bought time (to come to terms with the inevitable) and sense of fulfillment of duty (of a mother) by the money she didn’t have, and which she would be repaying for many years.
I had two problems in front of me. The first, most important and immediate was how to prevent her from spending any more money (that she didn’t have). The second was relatively simple, how to break the bad news.
So this time, I did not refund the money. I said, `Surely we can try. Let us admit the baby, I will do the operation.’ That was the only way I could have controlled her spending the money she had borrowed (most likely at exorbitant interest rate.)
I told her the expenses for the treatment- a figure a little more than what she had got. That stressed that I was contemplating a BIG operation. Also the figure was close to what she had been told by other doctor earlier. That ensured confirmation on my intentions. I told her, she can deposit whatever she had and the rest she could pay at the time for discharge.
She felt assured. She was finally doing something. She was managing the treatment. She wanted to be in control and I let her be.
The baby got admitted in the hospital. I told the nurse to start IV line, start IV fluids, and put in the nasal feeding (NG) tube. Nurses started taking care of the baby. Once the baby was out of her hands, the mother got some respite. She had time to sit back, ease up, relax, she had time to think, look around, look at her other children, arrange their food, and contact her family. She wandered out, took her children out in cafeteria, she had some tea and felt refreshed.
She chatted with parents of the children admitted in the ward. She realized there were many mothers with very sick babies. With their stories and experiences, slowly the logistics of treatment started dawning on her. There were few with babies in ICU for 3 weeks, some with 2 months. There were stories how hospital sends bills and how fast bills increase, which doctor is smart and which nurse is kind etc. She looked out at brightly lit corridors and polished floors. She noticed the fresh white sheets and clean bathrooms and clean food tray. All this was better than her home. This hospital seemed to be more relaxing and pleasant than her shanty home in the slum. The more she liked the hospital the more she felt uneasy. If this was so good, surely this is going to be damn expensive. She had to leave the hospital as soon as her baby got little better. She then realized that in all this money talk she had not discussed with me the operation and if the baby would get better. She decided to talk to me the next time she sees me.
It took me a few seconds to read all that had crossed her mind as she approached me while I was crossing the cafeteria to go to the OR.
`Doctor? How is the baby?’
`We have started the treatment.’ I said.
`Will operation be tomorrow?’ She asked.
`I have asked children’s doctor and anesthesia doctor to see the baby. If they say everything is OK, and it is safe, then we will do the operation tomorrow.’
`Doctor, will he be OK?’
This is the first time she has asked me this question.
`We are trying our best. But have you called your other relatives? Where is the baby’s father? I need to talk to you all about the operation.’ I said.
` Baby’s father has gone to work. He will come in the evening and I have also called my father and my brother in law.’ She said.
`Good. I will see you all in the children’s ward at 6 pm after I come back from operation theater.’
`OK. But, doctor will he be alright?’ She again asked, tightly holding my hand.
`We will talk all about that. We are doing our best. Aren’t we?’ I patted her hand.
She managed a smile and said, `I know he will get better because he is in your hand. In the ward they told me that you are a very good doctor, you have saved many children. And you are so kind.’ she firmly held on to my hand with her both hands.
Now it was my turn to manage a smile. I struggled for words and gently extricated my hand from her grip, and I mumbled something reassuring while I walked away.
In OR lounge, my colleague pediatrician called. He had seen the scan and the baby. `So, what is the plan? It looks quite a bad cancer.’ He said.
`It indeed is. I don’t know how much it would help, but if relatives consent, I am planning a shunt surgery tomorrow.’ I said.
`Yah. The head circumference is large and there are all signs of increased intra-cranial pressure. Anyways from my side the lungs are clear and blood chemistry looks OK. It is good that you put the NG tube, the lower cranial nerves are already involved. The baby has been vomiting since morning. I hope he has not developed micro-aspiration.’ He said.
`I shall keep you posted’. As I put the phone down, I thought, it looked like, I will have to go ahead and operate.
In my personal opinion, surgery was a futile exercise. But again this was my personal opinion, not a Medical opinion. My personal opinion is based on my life experiences with patients. My professional opinion was about what CAN be done. My personal opinion was about what SHOULD be done. It was important that I should not mix the two. After years of practice, I could see clearly what was going to happen over next few months. Multiple admissions requiring interventions, ventilator assistance, oncology consultations, perhaps a chemotherapy trial and then of course the inevitable. In this case, it won’t come to that. Because at the end of the current admission, if we indeed do the operation, they most probably would not be able to pay the entire hospital bill. Whatever the amount they have deposited may be quite huge for them, but it was nothing when it came to hospital bill. Probably she had raised that money partly from loan sharks and partly from the people in whose home she worked, as advance or as interest free loan. Her middle class employers are unlikely to get their money back. As the baby dies they would be very hesitant to ask it back. The professional money lenders are unlikely to let go of the principal, she may be able to manages concession for the interest after telling her sad story. She will have to squeeze it out of her other meager fund of children’s education, or food to pay it back or pay some other way.
Over the years I have realized that people don’t like to be told the obvious if it is unpleasant and especially when they are not ready to hear. Time and again I have found that poor people are by no means poor, when it comes to richness of choices they make, the courage they show and the resources they can mobilize. I am extra careful in avoiding making or dictating decisions to them, however much they plead me to do it for them. So I was all geared up for the operation, which I did not want to do.
When I saw the baby during evening rounds, he was settled and there was no fever. After rehydration, he was definitely looking better. His breathing was good. I had no medical grounds to postpone the surgery. I wrote pre-op orders. The relatives of the baby were waiting for me in the consulting room. Sita was standing on one side quietly. The group consisted of one elderly gentleman, one middle aged guy and an untidy young man (faintly smelling of alcohol) as they sat across the table. They greeted me with respect. The older man was her father, middle aged man was her brother in law, (her sister’s husband) and the young man was her husband. He was sober and quiet and avoided eye contact.
Now was the time for straight talk.
`So doctor, when are you going to do the operation?’ Sita’s father asked.
`Tomorrow morning. The child looks well, now that we have started the treatment.’ I said.
`But what is the problem with the baby?’ He asked.
`There is a tumor in the brain, in a very important part of the brain. It is blocking the waterways. So we need to put the tube to bypass the block. Otherwise it could get very dangerous, it could threaten his life in weeks or even days.’ I explained them with CT scan.
` So will he be alright after the operation?’ Sita’s father asked again.
`No. The operation will take care of only water blockage. Not the tumor. We will have to give medicines for that’. I said.
`Does he need to be in hospital for that, after the operation?’
`No, but on days of giving medicines, he will have to be admitted for a day’. I knew what he was driving at.
There was a prolonged uneasy pause.
Finally Sita’s father spoke again.
`Doctor, tell us frankly, what are the chances? You see, to us this baby appears to be in very bad shape, he has not turned or sat until now, when do you think he will start doing that?’
Now they were ready for the bad news. They expected what I was about to tell them.
`Looking at the scan, most probably the tumor is not ordinary tumor; it is most likely a cancer. Do you know what cancer means? It means it cannot be cured and however much you treat it, it keeps coming back.’ I started strategic maneuvers.
`I know cancer.’ Her brother-in-law said. My mother had breast cancer. She died.’
`Right. So it is something like that but inside the brain. ‘
Again there was awkward pause as clock ticked . Sita slumped and sat down on floor sobbing. Nobody moved. I let her cry. She needed to vent. Her husband muttered something sympathetically.
`Sita, go outside and sit with your mother.’ Her father said. She got up and went out of the room sobbing, her mother was sitting outside.
`So doctor, you are saying that whatever you do child will never get better’ Father said.
`Well, he may get better for few days but cure is almost impossible.’ I said, choosing my words. ` Unless it is something else like tuberculosis. But I think it is extremely unlikely.’
`And how will you know for sure?’ Brother in law asked.
`I am running some tests, but best way to know for sure is to do biopsy. ’ I said.
`You mean a different operation? ‘
`Yes.’ I said, hoping hard that they don’t ask me to do that.
They looked at each other.
`So how much all this going to cost us, I mean this shunt operation that you are going to do tomorrow?’ Brother in law asked.
I was getting annoyed. They were saying as if; I was going to do the operation that they have no particular opinion about.
`Well , We, ‘( I stressed WE) ` are going to do the operation only if you all consent. You have already deposited some amount. It may exceed more than that if baby continues to need ICU and hospitalization, and then…’
`Doctor,’ her father interrupted, `honestly we don’t have any money. Baby’s father, as you can see is good for nothing.’ Sita’s father looked at him in disdain. He looked away. `I am old, I don’t work. But I help her with money as much as I can. Just this year I had to spend money for this baby’s delivery and I have to spend money frequently as my wife needs treatment many times due to her breathing problem. I am already in debt at my age. Sita didn’t tell us when she admitted the baby. She had borrowed money from somewhere, but I don’t know if she can ever repay. This is a boy after two girls. We would all want this boy to survive. He would have looked after his mother when he grows up. With girls, you know, you have to keep spending money on them, even after you get them married by giving a big dowry. Anyways..But if you say, this is cancer..then it is all over. What can anybody do, it is her fate!’
He looked down at his hands in total despair.
This was not a platform for debate on woman’s role in society and their resourcefulness.
I could sense that some decisions are being made in their minds. I waited patiently.
Brother-in-law spoke. ` Doctor, we won’t mind spending money. But if there would have been a guarantee that child will be alright, we would have done anything for this boy. This hospital is way above our budget. But she came here for you. So you must have chosen the best for the baby. Is there is guarantee, we will raise money for the treatment.’ His eyes pleaded for some reassuring response.
`There is no guarantee in medicine. If I could guarantee, I would be GOD. Especially in this case, there is none.’ I nipped off at the last straw of hope that they were trying to hang on.
It was time to wind up. `We have a social worker here, who can help you approach some charitable organization for financial help, if you want to. Anyways, take your time and think it over and let me know your decision. I am coming again after one hour to see a patient. If you want we can talk again’.
`Thank you doctor.’ They walked out.
When I came back, the nurse informed me that the baby had a spike of fever. That was not a good sign to do shunt operation after 12 hours. His breathing was rapid. I have told them to contact pediatrician, he was likely to need a repeat chest x ray, perhaps change in antibiotics. I wondered if we were on slippery downward slope of series of complication and escalating hospital bills.
Sita was waiting for me outside the ward. Her eyes were red but she seemed composed now. She was alone. `Is everything OK?’ she asked. `Baby has some fever, if he has one more spike at night, we may not be able to do the operation tomorrow. We may have to wait.’ I said. ‘Have you people decided about the operation?’
`Doctor, they don’t want to do operation, they want me to take the baby home.’ She again broke down, but controlled herself. `But I have decided, I will get money from somewhere. You don’t worry about the money, just give him the best treatment.’
For years I have picked up some punch lines. When patient tells me that I should not worry about the money, it is a distinct indicator, that I should be definitely worried about it. When they tell me, it is more like they are telling themselves and assuring themselves. This meant that massive efforts are underway to meet today’s bill, and soon the funds are going to dry out while filling the bottomless pit of hospital expenses.
I looked into her eyes and asked her, `Did they tell you everything that I told them?’
`They said that baby will never become better and he will die. Is it true?’ she pleaded for `NO’ as answer.
I took her to the consultation room and made her sit beside me.
`Sita, I think your baby has a very bad tumor, he is not going to become better. He can never be cured.’ Tears rolled down her cheek and and for next 5 minutes I heard what I already knew- drunk husband, ailing mother, piled up debts, her uncertain job prospects and her worry how she will support the other two children. Her parents were supportive and her sister too but she has already leaned too much on them..` If only I have money….’ She kept on repeating.
`OK. Look here, one thing I have to assure you, even if you were the richest mother in the world, that would not have saved this child. Don’t think that you cannot cure this baby because you don’t have money. You have done hell of a lot for your baby. You got the CT scan done, you started treatment, you came to me, we admitted her, and we are going to do the operation tomorrow. We are all doing the best that we can for the baby. You are a very good mother.’
She sat quietly thinking. `Where are your other two children?’ I juxtaposed her unsaid thoughts with the obvious ones.
`I have sent them to my sister. She will feed them.’
`Anyways, Sita, I don’t think we can do the operation tomorrow. Let the fever settle. I will see you tomorrow morning and we will talk. OK?’ I said. She nodded.
I cancelled the surgery. I looked at the baby again. He had developed the squint and was drooling. The tumor was catching the cranial nerves. He was not moving one side well, brainstem invasion had begun. The soft part of head looked tense. He needed shunt.
I met Sita the next day. She was cheerful, composed and her sister was with her.
`We have decided to take him to the Government hospital, we cannot afford this hospital’. She said.
`Ok.’ She thought I will protest. She was surprised at my submission. She was once again in control. And again I let her be.
`Will you give me a note and medicines for the baby. We may take her to the hospital after few days.. So till then.. ‘ She said.
`Sure. I will also give a note for the doctor too.’ I called her inside the nursery. I told the nurse to teach her how to manage and feed the baby through the nasal tube.
I wrote a referral note for the doctor along with case summary and wrote discharge. The bill was modest, the drugs, the nursery and oxygen had chipped off a handsome amount from her advance, but still she would get a good refund. I waved off my visit charges.
I saw Sita after six months. She came for her elder daughter who had headache. She paid my charges.
`Do you remember me?’ She asked.
`Of course I do. And I remember her too.’ The girl blushed.
`She has headache, I did not want to go to any other doctor, I trust you.’
`That’s nice of you.’ I said.
I started examining the girl.
`The baby died after 1 week doctor. At home, while we were preparing to take her to the hospital.’
`I am sorry to hear that.’ I said.
`Yah. He was a sweet boy. I always wanted a boy. But what can we do? It is fate. But you really helped us. You have been very kind. My sister also likes you, I told her about you. She also wants to see you for her back pain.’
I smiled. `Now you are helping me.’ I said.
`Your daughter needs glasses. That’s why she is having headache. I will give a note to the optometrist.’
`OK Doctor. She is very smart, always comes first in the class. She says she wants to be like you.’
`And I am sure she will’. I said smiling.
When she left, my secretary returned half money of consultation. `You are madam’s old patient, even if this is a different patient. It is the same family. So madam said to charge as follow-up visit’. This time Sita was happy to get some money back, it would surely cover expenses of her girls glasses.