Personalised medicine-personalised surgery
One day this young woman was brought to me for treatment. When I saw her she was almost blind. She was brought by her sister and brother in law. Her husband had abandoned her as she progressively lost her vision and was unable to do household work; cooking especially became a big problem. She had a large tumor in the center of the brain (posterior third ventricle with hydrocephalus), with backing up of fluid in the brain, this was causing dangerous increase in the intracranial pressure. That had led to dangerous compression of her optic nerves, and complete blindness was almost certain in a few days. They had brought her to the hospital, six months earlier when the CT scan of the head was done. She had some vision at that time and was advised surgery as early as possible. The husband, a farm worker earning daily wages, was accompanying her then. He had sent her back to her sister. So the sister and the brother-in-law with other equally poor relatives had collected some money over the past six months and brought her back for treatment. By this time the visual loss had significantly progressed and she had now developed headache and drowsiness. She could just about perceive light and hand movements , just one foot from her eyes. I explained to them everything about the tumor, that it needs to be removed, that it could be cancer and why her visual loss. They were very clear. They have only a limited sum to cover all medical expenses including medicines, if the bill runs in excess, they categorically told me, they would not pay, because they don’t have any more. They were not interested in the tumor, they just wanted her vision back, so that she can go back to her husband. Now it was up to me to DO SOMETHING.
Being in a situation when you have to make crucial decisions for the patient is not unusual for a doctor in India. He /she has to choose the best and the most acceptable outcome to suit their budget. With most of the rural population paying their medical bills out of pocket, cost is the overwhelming consideration when these people make their choices about health care. With poverty line defined at 3000 Rs per month, raising 50000, which is bare minimum to cover a major surgery, is a herculean task. Usually money is raised through exorbitant debt, selling of land, or farm animal, pawning of ornaments, and small contributions from family and friends or charity from government or private institutions if one is resourceful.
But they understand the `cost’ of their money, ( it was too little to cover all the costs, for them it was big money) and they are very clear what they want in exchange of that BIG money. In this case, the relatives wanted her vision back, because only that outcome was going to change her life. They did not want to throw their precious money in something with uncertain outcome. As I understood the situation, her vision was the most critical part of her socio-economic, emotional well-being. Tumor was irrelevant. If it is in fact a cancer, whether we treat or don’t treat, anyway she is doomed. If I would have told her that i am sure it is definitely cancer, and its implications, they would have just taken her back home.
In this case, even if I would have done this operation for tumor excision completely free, the money would not have covered even her surgical expenses, let alone the ICU care after that. The ideal professional decision should have been removing the tumor (which is a very major surgery, with around 10% risk of major morbidity and mortality, and unpredictable outcome about the vision, the long term prognosis would entirely depend on the type of tumor and might have required further treatment with radiation).
`Will removing this tumor bring her vision back?’ They asked. It was difficult question to answer. `Will everything be alright? ‘The sister asked as she stressed again, that that’s all the money they have. They cannot pay anything more. This meant that after the surgery if they run out of money, they would have to take her home in whatever condition she would have been. They did not want to go to the government hospital. According to her sister, people are treated like animals there. She has heard a lot about me and so she has come. She will not leave unless I treat her sister.
Many times in my practice I had to deal with this extremely stressful situation. It is many times more stressful than a complicated brain surgery, when patients plead, and trust me with their lives AND money. One has to go beyond one’s professional judgment and understand clearly exactly what is the outcome that they want. I find that`listening’ to patient or their relatives is very important to bridge the gaps of understanding!
So I decided to take my chances. I assured them that her vision will come back, though very slowly. This was OK with them. They wanted her vision back enough that she can cook and be safe with fire. then she can go back to her husband. I said that it was possible. I felt explaining the probabilities of complications and undesirable outcomes to them was of no use. I can discuss with them the percentage of probabilities, but they don’t have the luxury of percentage of payments according to results. For them, they pay or they don’t pay. So they wanted answers yes or no. Saying no chance or very little chance would have sealed this woman’s fate. I had to do something, I had to try for her.
Written consent has very little practical relevance in such settings. First of all many of them are illiterate. Those who are literate are not educated. And even those who are educated have little patience for burdening themselves with intricacies of medical science and statistics. However, even in rural setting, detailed written consent is obtained. Especially in case of neurosurgery, in addition to general consent a specific consent explaining risks associated with that particular condition and the specific operation is written in local language and read out to patient and his/her relatives. Sometimes, especially in cases of high morbidity and mortality, it is often felt that the whole interview should be recorded. It is experience of many surgeons that especially in critical cases, there often remains a huge gap of understanding between the doctor and the relatives. I have many times experienced that after a nearly one hour of interview explaining the risks of surgery and that the tumor could be cancer, the relatives get up to leave, only beaming with smile and saying, `So everything will be alright, isn’t it? We know for sure that if you try he will be alright!’ Hope is a very powerful motivator in face of adversity. Sometimes when faced with having to make impossible choices and near certain fatal eventual outcome, as in brain cancer, hope is all they have to hang on to, while they shell out money which they do not have and which they will be paying back with interest for a long time, after the patient is dead and gone!
Written consent is more for the doctor than for the patient or his/her relatives. These are legalities. They don’t serve to heal the bitterness, which may ultimately arise when complications develop. Complications are integral part of every surgery and every intervention. A surgeon who says he/she has not developed any complications has not operated enough. You can minimize it by anticipating it and taking precautions, but you cannot avoid it in every case. Complications increase sufferings, but from practical perspective they also increase medical bills.
So when the relative of this patient said that she will not be able to pay anything beyond what she have, for me this meant that there was no room for complications! Of course I can always say `it was not in my hand’, but it is difficult to shrug off, when somebody puts their life in your hand with such complete trust .
So instead of major surgery, we decided to do a simple shunt operation, diverting the excess fluid and reducing the pressure in the brain and thereby decompressing her optic nerves rapidly. It would have far less chances of complications, it would be less expensive and it will take care of the immediate concerns about her vision. Tumor can wait!
The situation is not necessarily easy in case of educated urban patient or relatives. I am not sure if more information makes it easy to make `informed’ decisions. When my own close relative had a cancer, I found making decision about type/extent of surgery completely confusing. I felt it was unfair that I should be making that decision, even if I am a doctor myself. If I am a patient and my surgeon tells me that – `75% of tumor can be removed safely, and rest can be radiated and usually 80% tumors respond to radiation, but chances of radiation related problems are 10%, but if we remove almost 99% of the tumor, we may avoid radiation but there is 25 % risk to life or major problems; So what do you want me to do?’ I myself don’t know how to answer this question, as a patient. I can ask more questions and surely more statistics will be provided. So now technically I am more informed but I am not sure how wise I have become to make those decisions.
Many times I came across well-heeled relatives who quietly listen to all my talk. They will not tell me till end that I am the fifth neurosurgeon they are visiting. In their mind they are busy doing calculation and comparing statistics. 50% success, 75 % success, 90 % success; 10% risk, 25 % risk etc. They would also be comparing the expenses in these calculations. It seems like a good strategy to pick up the best result at cheapest cost, but not always. Often they end up regretting whatever decision they have made. Quite often they come back to me saying that they had made a mistake and they actually ended up paying a lot, but patient did not become better, in fact deteriorated. They would say now they have realized that I was right and now they trust me and could I please take care of this patient now onwards. This is a bad strategy, I have always resisted commenting on and taking over patients.
The logic of chance and probabilities can be very deceptive. I used to tell patients who would quote me this competitive survey of doctor’s assessment of success, that irrespective of any statistics even in case of 99% success, their chances are 50-50. It is when I as a surgeon I build my series of more and more patients the statistics emerges. As a single case there chances are equal to fall either in group of 99% success or 1% failure. In fact, if a surgeon has a very good run with surgical results, which otherwise has a high overall rate of complications, with every new case the surgeon holds his/her breath anxiously, when statistics will catch up with him/her!
Many times, poor patients will come with some benefactor. For some reasons, he has decided to help. He would usually be some politician or politically connected person from their village. In the consulting room he will sit across the table facing me, as patient and his relatives will stand with utmost respect for him. Usually by this time, this would be the second meeting with appointment. I am not counting three or four encounters when Iwas stopped in the hospital corridor and in the parking lot, when eth relatives will approach me and assure me that they are arranging money and that they trust me and if everything would be OK after the operation? Sometimes there would be this extremely awkward gesture of a child being thrust forward to touch my feet, and that patient is the father, and please does whatever best you can, for this child needs father.I have learned not to lose my patience, and a some brief words- `its OK, don’t worry’ and a pat on the back and a smile is all that is needed to extricate oneself from this extremely awkward situation.
The benefactor would start elaborating how poor the patient is, which would have been impressed on me many times by now. He would say that he is helping them on humanitarian grounds, and I should help too by considering lowering the charges. Fair enough, I shall give concessions from my surgical fees. I would again explain in brief about patient’s condition and what surgery we are planning.
Then he says if I can give 100% guarantee of results. I take deep breath to control my impatience. The patient’s relatives would expect me to not to lose my temper with this guy, and show respect to this benefactor, as he is their only hope. I have learned patience and I have learned tact, as I get more and more understanding of this socio-economic undercurrents. Money is not as important for this benefactor as the results are. He would like to put money on a winning side. This patient when she lives and walks in his village, it is his walking and talking advertisement as a social worker. He is a smart guy and surely understands my jargon of percentages of risk. It is my turn to understand his point of view.
Unlike other surgical branches like orthopedics, general surgery, neurosurgery is a very complicated branch, not just in terms of surgical skill and tactics, but especially in terms of decision-making, before, during and after surgery. the outcome is mostly black and white. There are very few gray areas of outcome, either the patient becomes completely alright or had devastating disability or death. either he walks out of the hospital or he is wheeled out of the hospital, or leaves the hospital alive. At every decision points, you are making choices at this fork of contrasting outcomes. He has given me clear Que how he wishes me to make my decisions. Immediate good outcome is more important than the best long term results.
I would flash a broad compassionate smile and say – “If I would give 100% guarantee I would be God. I am only human. Ultimately it is HIS will; we can only try our best! You have tried your best by helping him, and I will try mine!” Over the years I have realized that this is the most honest, satisfactory and politically correct answer I can come up with. I think that in Indian culture, across all social classes, there is this deep rooted cultural belief and understanding that we cannot really control our lives. Medical science can help, but cannot work against our fate, our Karma and God’s wishes. What is important is that we try and rest is God’s wish. I feel that this stoic acceptance of eventual death probably also comes from deep rooted spiritual belief that human beings are more than their bodies and that the soul ultimately leaves and enters new life and new body. The soul changes bodies as we discard old clothes and wear new ones. This belief from religious scriptures has been echoed by thousands of saints and folklores in many languages across India. Many times, while i am discussing a grave prognosis and fatality to patient and their relatives talk, I have perceived spiritual undercurrents across different social classes, as they grapple with their reality.
So in this case of our blind lady we went ahead with a simple shunt surgery. I had to assure them about good chances of visual improvement not only for patient’s sake, but also to make them feel that their efforts for collecting this precious sum of money were worthwhile. The shunt operation went smoothly. Her headaches were relieved completely; she was more alert and had a good appetite and was discharged in a couple of days. Everything fitted in their budget. Now all they have to do is to wait for vision to improve. They were very happy. Honestly I was not very optimistic about her vision, and also we did not know the nature of the tumor and how fast it would continue to grow. I asked them to bring her back for follow up after 2 weeks.
Surgically shunt is a simple operation. But every neurosurgeon knows how complicated it can become over a period of time, if infection and mechanical dysfunction develop. It is one of the simplest neurosurgical operations taht can lead to recurrent headache for surgeons and patient alike. If complications set in can lead to multiple surgeries and multiple courses of very expensive antibiotics! With financial line already drawn by this patient’s relatives, I was bracing myself for the worse. At the time of discharge they were touching my feet and saying all nice and laudatory things about me. With all these gestures, a thought of complications was not very pleasant.
Trying to fit entire treatment package in a shoe-string budget is indeed very challenging. Usually in such cases one leaves medicines out of the hospital bills, asking them to buy it themselves from the pharmacy as needed. It is very stressful to balance economy and results. All those corners that you cut in surgical consumables increase more and more stress on your surgical skill, discipline and judgment.
Fortunately all went well and patient returned after 2 weeks with smiling face. She said she could see now and indeed she could count fingers at 2 feet from her face. I told them to wait for some time before putting her to work and to do an MRI scan after 3 months. I was not sure how much they will heed my advice. Sure enough, I did not hear from them for quite some time and forgot all about it. Then she returned after 8-10 months, this time not with her sister but with her husband (!), all smiling. I had not talked to her last time, as she was in a drowsy state and it was her sister who did most of the talking. They happily burst into animated talk in their language which I did not understand. So I had to ask the nurse to translate. He was telling me with beaming smile that she could see everything in the house and now she cooks well. She was obviously happy, being back with her husband. As if I was not convinced she got up and peering out of the window behind my chair she described the scene she could see outdoors, also mentioning their colors. That was impressive. This time they had come with some money for MRI scan. Can I give some concession? Sure I can. So MRI scan was done, and tumor was of same size, and shunt was in place. Then suddenly he pulled out one more scan done nearly 2 years back in a government hospital. I had not seen this scan before. This showed the tumor to be of almost the same size. This was a good news, this indicated that it was probably a benign tumor with a very slow growth rate, or it could be a congenital tumor too ( present since birth). I told them that scan was nice and they were very happy. She could not stop smiling. I told them they have to come for follow up every year, to which they gladly agreed.
This case is not worth publishing in any journal and I cut a lot of corners in the management. I got plain lucky that I probably operated when it was not too late for her vision and life and it turned out to be a benign tumor. I think I did a good job of uniting the family.
It is quite possible that tumor will slowly grow and she may require a major surgery at some point later in her life. Ideally tumor is better removed now itself.By this time, I have gained so much trust that if I had told them tumor operation is also essential they would probably gone and collected some money for the tumor surgery as well, expecting the same happy outcome. But the question that I would pose to myself was- even if surgery is successful and that she does not develop any complications of tumor surgery, will she be better off without the tumor than she already is, not to forget the huge debt that the family will accumulate in the process. In the best case scenario, it would have been like opting for long life by getting rid of the tumor, so that you can use that long life to pay off the debt that you incurred in the process! Will her husband love her, treat her with same affection, now that she would be the reason who caused all that debt. Even current domestic bliss may not last long. These are very difficult questions. With vary limited resources this extremely uncommon tumor was only one of the perils of her life that she could deal with, with all her life-earnings. That still leaves her more common conditions like life threatening infections, road traffic accidents, and complications at child-birth, which she is more likely to encounter later in her life . This is was a judgment call that I could make only by putting myself in her place. What would be the decision I would have made for myself, in her place.
In neurosurgical practice one spends more time with relatives than with patients. It is a branch where patients usually don’t `walk’ up to the doctor, but `brought’ to the hospital. In the pre-op decision-making process and post-op rehabilitation, relatives form an integral part of the patient care. It would take me 5 minutes to make clinical diagnosis while examining the patient in ICU and then I would spend 30 minutes with relatives explaining significance and implications of those findings with relatives! The parents, spouse, siblings, children, cousins, aunts and uncles, friends, neighbors, colleagues form an extremely resourceful social network around a person in India, without which I feel, successful health care is impossible in India, in its current state. In a high morbidity branch like neurosurgery, a successful doctor recognizes and understands the pillars and resources of this network and becomes a part of that network, while making decisions and planning the treatment. Even while treating a very poor patient, there will be at least 5 people accompanying him/her and at the time of surgery many more will be squatting outside waiting for patient to come out. There will be steady supply of cooked food for this patient three times a day and unceasing flow of visitors, a van will be arranged to take him home. There will be much deliberations and negotiations at the time of paying the hospital bill, and further concession in the bill will be demanded. But it will be settled, as they know that patient needs follow-up and feel that doctor should be happy at the end. This social network, collectively makes decisions, generates financial resources, arranges hospitalization logistics, and supports home based care including physiotherapy and `psychotherapy’. I feel what is best for the patient needs to be decided in the context of this network and not in isolation.