Originally posted by: Shalzie
Mili, maybe I am influenced by my personal bias of looking after a sick parent, the bills which come with it, the lack of humanity of the corporate medical world. I understand everything which you have said but there is something seriously wrong where a person will die simply because that person cannot afford the medical bill. God does not charge us anything but humans created a system where everything has a price. Maybe I am being too simplistic but I still find this wrong.
am somewhere in the middle -- I understand what mili and letha are saying but also hear what shalzie is referring to.
so not to depress anyone or hurt anyone's feelings -- but these are my thoughts influenced by my own experiences in various areas. when we look at medical expenses and treatment, there are several moving parts.
infrastructure and education:
one is the govt's role in terms of infrastructure. one of my relatives daughter is studying for medical and he said that he expects he would have spent 1crore by the time she starts working. we were wondering how on earth he came up with such a number but he is counting the time spent in tuition centres preparing for NEET. by the time, these junior doctors graduate, they are still being paid a pittance. in govt hospitals, they can get as little stipend as Rs.10,000 and sometimes they get payment after months. so what happens? it takes many years for doctors to get expertise and actually start earning the investment they have put in to their education. so they start charging quite a bit at the later stage. that is one aspect.
-- the other aspect of infrastructure is that in many areas, the govt facilities are lacking. we think of katha's story as unique. however, couple of months back, I was watching this interview of this NGO lady and I was gobsmacked: human trafficking and sexual exploitation happens in many rural areas because of medical debt. so this NGO was focused on trying to increase the number of the health units in rural areas so people are not selling their daughters into sexual slavery in order to access healthcare. however, even the NGO lady is saying that these measures cannot be done privately and needs a combination of public and private measures.
-- now because of the high cost of medical education, many junior doctors will refuse to serve in rural areas even though they have bond to complete. so what happens to folks in rural and semi-rural areas -- those who are forced to come to big towns and cities to access treatment and have to shell out money? so we need govt intervention to improve infrastructure and ensure that healthcare is accessible to all.
medicine and equipment:
-- we really need to be thankful to Prime Minister Indira Gandhi for her bold initiatives when it comes to pharmacy. because of those govt policies which still exist today, we have access to medicine at a far lower cost than many countries. as a result, we are the pharmacy exporter for many countries especially in the global south.
-- however, the picture is complex when it comes to new cutting edge drugs. every medicine on the market reflects a minimum 20 years of research before it hits the shelves and has to go through several rounds of regulatory review before it is deemed safe for human consumption. what does that mean? it means there is a cost to it for the pharma company. they have to spend for 20 years in development before they start seeing any profit and it is not guaranteed. there are many medicines that get chucked out during development because it does not work. then they have a small window (about 5 years of exclusitivity) to make that money before it becomes generic and other competitors enter the picture. that is the reason, new medicine is always super expensive.
-- I was watching a documentary few months back and I was gobsmacked: because China does not have such pharma policies in place, cancer drugs are 10 times more expensive. so there are folks who travel between the two countries or send these drugs from India via cargo. this is not actually legal and if caught, they will be fined and face more punishment. however, they do it on humane grounds.
-- when it comes to medical equipment, many of the cutting edge cancer treatment machines are produced abroad and are above 1millionUSD a piece. so add import cost, each of these private hospitals are spending enormous amount of money to just set up that infrastructure. that is why those treatments as well as scans are so expensive: the hospital is transfering that cost to their consumers. till the hospital recovers the cost and the machines cost comes down (plain economics), we will see such numbers. so something as simple as Xray is cheap because those machines have been in existence for years.
so there is a factor to expenses that is a larger social issue and can only be looked at from a govt perspective. the measures to change has to come from a variety of players as well as legislation. there are no easy answers or solutions to why we are forced to bear such high cost.
our beliefs:
many people don't really think about it but our personal beliefs also shape our experiences with hospitals. shalzie, here is where I will agree with you. I also think in some cases, it is nefarious and in some, it is simply arrogance or the lack of experience. when it comes to doctors, younger doctors have a can-do attitude and are always suggesting the most invasive of treatments. they really think that they can fix the problem. older doctors who have seen it all are far more measured and offer more options. they are far more aware that there are limitations to medince no matter how much we have advanced.
in this drama, I disagree with both katha as well as the doctor's approach. here is why:
-- I had two advices that really helped our family and shaped our approach to how we dealt with the situation. one was from my friend. she told me that we have to take control of the treatment and don't let the doctors make the choices for you. so ask the tough questions: are we looking at cure or management of the condition? not all cancers are treatable and with some cancers, there is nothing that can be done. instead, what you are doing is extending life by a few months. but the question to ask is how do you want those last few monts to be? so be realistic and not get swayed by fantastic promises or stories of other patients. look at it from case by case and what is comfortable for your family and the patient.
we also need to take into account the patient's comfort when we make a decision regarding treatment approach -- not all patients want invasive treatment. now if the patients want aggressive approach, then fine but when they don't want, are we willing to listen?
my friend refused any surgical or super invasive technqiues and asked for a different treatment plan. now that might sound very cruel to some but the palliative approach (managing a terminal condition) can be very good as the focus is on quality of life and minimizing pain. with some, patients actually live longer on palliative approach (where they just get cancer medicines) instead of invasive techniques like chemo, radiation and surgery.
some doctors are not comfortable suggesting the palliative approach because the familes may not be willing to accept and want to try and do it all. however, if both the family and patient are comfortable, the doctor will be willing to work with you and come up with more quality of life type treatment -- that worked for our family and something we are happy we took.
-- the second advice that helped was from a korean drama. people often think that watching dramas can be a waste of time but in my case, this drama really was a sign from God at the right time. I watched this drama a few months before the situation and that scene stayed with me for whatever reason -- it really helped me be at ease and helped how we as a family approached everything.
in the drama, a patient dies despite the doctor's sincere efforts and her expertise. when she mourns, a fellow medico gives her the following advice:
there are 3 parts to treatment: the patient's will, the doctor's will and heaven's will. the patient should want to get better and need to respond to treatment. if their body does not oblige, it really does not matter how good the doctor is. the second aspect is that the doctor needs to do their best sincerely. that is obvious. however, doctors are NOT God. the third aspect is something that many people forget and are not consciously aware of -- heaven's will. whether you are religious or not, we can all accept that death comes to us all at some point. there is no escape from that. no matter the patient's will or the doctor's will, if it is their time, they will go. we need to be humble enough to accept. only when patient + doctor + heaven's will align, a patient will recover.
-- my friend and I are similar in religious beliefs as well as temperment. so we were very comfortable with a palliative approach because we accepted that doctors are only humans and there are limitations to treatment and medicine. so we did not have excessive hopes on some magic treatment. we were also willing to accept the terminal diagnosis and simply leave it in God's hands. yes, we grieved at the loss of the parent but we also accepted it though it was difficult. 😢
back to the drama:
now all people will not react the same way to such a situation. some folks like katha will want to try more invasive techniques. that is totally okay provided the expectations are reasonable. instead, there is too much pressure on herself -- "I will save aarav" -- that is flawed thinking by placing the emphasis on I.
the reality is that she can do this treatment and aarav can still die. he won't because it is not part of the story but in reality, we have no way of predicting. in some cases, if it is terminal, there is actually nothing that can be done. excessive self-pressure on a caretaker to fix the problem only results in guilt and trauma. people think that if they throw enough money at a problem, they can fix it but not everything can be fixed. because of desperation of the family members (the feelings of katha), doctors take advantage and prescribe treatments that make no sense. so rather than quality of life, it is even more miserable condition.
-- I was recently watching this documentary on Dr Charlie Teo on youtube. you can look him up. he is a famous Australian neurosurgeon who did a lot of experimental surgeries on brain tumour patients. some survived for a period of time while others ended up in vegetative state. the families were left reeling with guilt and debt. so now, his license has been curtailed as many doctors felt it was unnecessary surgery as these are aggressive brain tumours. he however argued that he is on the cutting edge in developing new techniques and sometimes things can go wrong -- that is the price of experimental medicine. however, some family members feel that were sold hope and were not informed properly.
-- so my reaction to the doctor: he is way too arrogant in his promises that he can save aarav provided that the 1crore can be paid. actually he can't promise anything because a 1000 things can go wrong. instead, he needs to set realistic expectations and list what can and cannot be done. that is very important because family members need to know and be prepared for however the dice falls.
-- setting reasonable expectations is important because it also helps protect the medical fraternity. one reason we have incidents of violence against doctors and medical staff is because family members are overpromised and when things go wrong, they react in grief in violent ways.
-- the doctor seems nice and so rather than nefarious, am chalking it up to arrogance and lack of life experience. give him another 10 years where he will lose patients despite doing his best and he will stop sprouting such unrealistic promises.
final thoughts: I was in two minds whether to write this because it is a rather depressing and heavy topic. 😞 I actually feel tired emotionally penning this note (they are not fun memories 😢) but I figured it might be helpful to some. thank you friends for reading this long essay.
ultimately, the kdrama advice works very well -- remember that there are 3 parts to treatment: patient + doctor + heaven. then you will be figure out the approach that works best for the patient as well as the family and make choices that you can live with....
Edited by mango.falooda - 2 years ago
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