I met Dr. Sidharth Sethi, Pediatric Nephrologist from Delhi over dinner a couple of days back. We discussed a lot of things including HUS. HUS being a predominantly pediatric disease, Pediatric Nephrologists have a lot of experience in its management.
As we walked out of the restaurant, we were chatting about different things. In some context Dr. Sethi said, "Many parents feel it is better to get another child than get a transplant for their child with renal failure."
To be very honest, I did not understand the statement for a whole minute. Dr. Sethi went on to something else. I wasn't focussing. I was trying to make sense of that statement. What had getting another child got to do with the first one? Only after a while did I understand what that meant!
I felt really horrible. How could that be?
I thought hard about this later. Parents would think about the effort and the money that would be required for a transplant. They would factor in the chances of success of a transplant. If (or when?) the transplant failed, the effort and the money for possibly a life on dialysis. They would then figure that it is easier to get another child. This child would then be left to die.
Can you blame the parents for this? Yes and no. Yes, because you feel how can anyone be so cruel to let their own child die when they can make it live? No, because in a country like ours, when most people pay all medical expenses out of pocket, most people would find it difficult to spend money on kidney disease which has no cure. It is a lifelong drain of a family's resources. Add to that the effort of looking after such a child. Some people also say that why let the child suffer? What kind of a life will the child have?
Then for a moment, think about what the child would choose given a choice and assuming an ability to think and communicate. Wouldn't the primordial desire to live overpower every other rational argument in death's favor?
And then for a moment, put an adult in its place. The parents in the child's place maybe. Would the other spouse think that way? Let him or her die. I can always get another spouse! Would that happen?
There are no clear answers to these issues. One thing comes across however. India needs a better medical system. And no, this time, the population is not an excuse. Andhra Pradesh has shown the way. Thousands of lives have been saved. Aarogyasri must be replicated nation wide. There is simply no choice in the matter.
As we walked out of the restaurant, we were chatting about different things. In some context Dr. Sethi said, "Many parents feel it is better to get another child than get a transplant for their child with renal failure."
To be very honest, I did not understand the statement for a whole minute. Dr. Sethi went on to something else. I wasn't focussing. I was trying to make sense of that statement. What had getting another child got to do with the first one? Only after a while did I understand what that meant!
I felt really horrible. How could that be?
I thought hard about this later. Parents would think about the effort and the money that would be required for a transplant. They would factor in the chances of success of a transplant. If (or when?) the transplant failed, the effort and the money for possibly a life on dialysis. They would then figure that it is easier to get another child. This child would then be left to die.
Can you blame the parents for this? Yes and no. Yes, because you feel how can anyone be so cruel to let their own child die when they can make it live? No, because in a country like ours, when most people pay all medical expenses out of pocket, most people would find it difficult to spend money on kidney disease which has no cure. It is a lifelong drain of a family's resources. Add to that the effort of looking after such a child. Some people also say that why let the child suffer? What kind of a life will the child have?
Then for a moment, think about what the child would choose given a choice and assuming an ability to think and communicate. Wouldn't the primordial desire to live overpower every other rational argument in death's favor?
And then for a moment, put an adult in its place. The parents in the child's place maybe. Would the other spouse think that way? Let him or her die. I can always get another spouse! Would that happen?
There are no clear answers to these issues. One thing comes across however. India needs a better medical system. And no, this time, the population is not an excuse. Andhra Pradesh has shown the way. Thousands of lives have been saved. Aarogyasri must be replicated nation wide. There is simply no choice in the matter.
Comments
I regret to say, that in our country, due to the financial constrains, still there are children who are dying of renal disorders like aacute renal failure. I have met quite a few parents who never came back when we told them about the cost of renal replacement therapy, dialysis and transplant.
We are trying to help by a NGO- Pediatric Kidney Foundation (http://www.pkf-online.org ), but we need a movement to help these patients to get the treatment they deserve.
I think you should be a part of our initiatives too, as you are a role model for many patients all over the world
Such is the value of live vs. cost of medicine. This is a grey area not just in certain cases but the fact that there is no end to how much effort and money one can put into saving some one's life (e.g..5 transplants?...stop at 1 ?) etc.
Sadly, countries such as US are infact wanting to move away from Medicare type of solution. Even now...other than for Kidney disease, there is no support from Medicare also unless you are 65+.
Only Europe (and Canada) is sticking to the "medicine for everyone" philosophy.