Sunday, June 2, 2013

Give us the choice!

There are many options for someone who has been diagnosed with chronic kidney disease and needs some form of renal replacement therapy. You could get a transplant, you could do Peritoneal Dialysis, you could do hemodialysis at home or you could do hemodialysis in a dialysis center or a hospital. There is no one-size-fits-all.

Unfortunately, however, most patients are never told about all the options. No proper counseling is given about the pros and cons of each option. The doctor puts the patient on whatever form he thinks is the best. And worse, some doctors puts the patient on whatever form would get him the most money. I would like to think that the latter type are very rare.

For whatever reason, I find it totally unacceptable that patients are not a part of the decision at all. Every individual is different. Why should doctors assume that every patient would want to go onto hemodialysis in the hospital?

It is possible to get a pre-emptive transplant. That way, the patient does not have to undergo dialysis at all! Why are so few such transplants done? Is it solely due to late diagnosis? I don't think so. Very few doctors even consider this a possibility.

About Peritoneal Dialysis, I have written so much already that I can just point you to this post that I wrote for Dr. Kenar Jhaveri's widely read blog Nephron Power. It is very unfortunate that this excellent modality is still treated like an unwanted child by many nephrologists. Yes, some people are not medically suited to PD. Yes, some people are not comfortable with PD. Granted. But why take away the right of the patient to decide? It is after all, his or her life!

This brings me to home hemodialysis. In India, there are hardly any patients who undergo home hemodialysis. It is not the cost that is the primary roadblock. It is the perception of cost. I spend about the same on my dialysis as does a patient who dialyzes at a reasonably priced hospital in India today. And I get about four times the number of hours of dialysis as do people on regular thrice weekly dialysis, four hours each time! Where is the cost? Yes, you have to buy the machine and the RO plant. But there are ways you can get around this as well. I would say anyone who is generally active, mobile and stable can do daily nocturnal home hemodialysis! The best part is with this, he can be even more active, mobile and stable. He can go back to working full time as well which will put him in a better position financially as well.

The trouble is we don't even get to decide. Our decisions are taken for us. Why? Do you know that a study was undertaken in the US where nephrologists were asked which dialysis modality would they opt for if they were diagnosed with ESRD. Guess what? An overwhelming majority of them picked daily nocturnal home hemodialysis! But when it comes to patients, most of them still pick in-center hemodialysis.

Kidney disease is not really that bad. Today, the perception among most people is that ESRD is a death sentence. It is a matter of months before - as they say in Hyderabad - 'Khel khatam, dukaan bandh'! Nothing can be farther from the truth! It is important that doctors take up this responsibility of educating patients about the options and counseling them that life can continue as before, albeit with a few changes. Nobody else can.


suman sharma said...

very true kamal, no doctor told us about pd as an option and i heard it only from a caretaker of a patient while accompanying my father for hd in a hospital. pd has changed our lives in many ways at least now my mother, a 68 years old lady is free from accompanying her ailing husband every week twice for eight hours in total.

Jaya said...

So So So true ! Counselling is one very important and discussing the options is one v important part of counselling. But out here, why would the doc discuss PD or premptive transplant when he runs a dialysis centre ? Went through it...So feel it more...