Wednesday, December 31, 2008

Dialysis in India - the 'no choice' problem

(Another Disclaimer: When I refer to a doctor or a nephrologist, it is the average Indian avatar, definitely not all of them. There are exceptions, like the nephrologist who has treated me for the most part during my life on dialysis, Dr. Girish Narayen. I cannot thank him enough for introducing me to daily nocturnal home hemo because of which - I can safely say this - I am alive today.)

When someone is diagnosed with CKD in India, it is treated by many like a death sentence. No one knows what it means. Even established doctors not from the field of nephrology often assume that there is 'no chance' (of survival?).

When the patient is at a stage where he or she requires dialysis, there is absolutely no education on the different modalities available. It is assumed that the patient will be put on in-center hemodialysis twice or thrice a week, 3 to 5 hours each time depending on things like weight, financial position (sad, but true) and physical condition.

The patients don't even know that something like Peritoneal Dialysis exists. And they don't know that it is theoretically possible to do hemo at home everyday. In-center hemo, which is arguably the worst dialysis modality available today, is the default. Everybody is put on this. There is no choice offered, no options presented, no opinions offered.

Only when the patient or his family learns about these other modalities through the internet and through other patients, do they ask their nephs about this. Only then does it become an option.

Why this reluctance in introducing the different options?

It is definitely not commercial. I am sure about this. To me, it just seems to do with the 'comfort zone'. Nephs have been handling hemo for ages now. PD is relatively newer in India and less widely available. Home Hemo is not heard of by even many nephrologists.

Let's talk about home hemo first. I agree to some extent that this cannot be made widely available in a country like India. First, the training is quite complicated. There is no NxStage System One or Aksys here. So, one would have to use something like the Fresenius, the Gambro or the BBraun machines which are much more complex than the System One or the Aksys machines. Training to use these machines is not impossible but it is definitely more difficult. It should be offered as an option to those that are willing to spend the money to buy this machine and are healthy enough to take charge of their own treatment or have a partner or a family member that is willing to help with the treatment. The younger segment of the population should definitely be offered this treatment, maybe a few months into dialysis.

Peritoneal Dialysis, on the other hand, is now widely available. The cost of the treatment is now only a little higher than in-center hemo. The quality of life can be dramatically better. There is absolutely no excuse for doctors not to present PD as a first choice for patients who need to get on dialysis. It should be mentioned in the same breath as in-center hemo. Doctors should explain the positives and negatives of both and let the patient decide unless there are some overriding medical concerns in the usage of either. PD, for me, was a godsend. After my transplant did not work out, if I had to continue on in-center hemo, I would have given up long back. PD gave me my life back.

Well, there are people who prefer in-center Hemo to PD. The only thing I'm saying is involve the patient in this decision. Do not decide for him or her. Present the choices, the pros and the cons of each and let the patient make the decision.

A standard process must be defined and it must be made mandatory for nephrologists to present the different dialysis modalities available and the doctor and the patient should together make the decision on the modality to be adopted for dialysis.

This would be a small beginning towards real change in the dialysis story in India.

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