Lessons from unexpected sources
It was some time in 1990-91. Working as a junior faculty in the division of Nephrology, I was busy. Setting up a new Nephrology unit with just one senior person supporting, most of my days and night were spend in the dialysis unit, much to the irritation of my wife! Busy with the job of setting up systems of the unit, seeing 8 to 10 patients on dialysis a day, seeing that their vascular access is in place, and decisions for dialysis are taken, there was not much time left over. Very minimal to listen or communicate to patients or families. Calls from casualty or other units of Medicine, where we would go see, diagnose renal failure, look out for indications for dialysis, have a quick chat with the family regarding the need for dialysis, and then rest was all standardized protocols. Patient comes into the unit, vascular access is put, 2 hours session 1, 4 hours session 2 onward, in between assessment will be done on the long-term plans and rest will be communicated over next few days. Day in, day out many such patients came in went.
Many turned out to be those with Chronic Renal failure, who needed long term dialysis and renal replacement therapy – renal transplant. With very few options for transplant those days, most opted for ongoing dialysis. We did try to make time, as and when available, to quickly talk about the life long renal replacement support required with dialysis if transplant was not an option. And many opted for the same despite the monthly costs of over 9 to 10K. Many lives were saved, many pulled out of severe pulmonary edema, hyperkalemia, acidosis and we had the satisfaction of seeing many making dramatic improvement.
It was one of such days, a relative of a regular patient came asking for a time to talk. Memory fails me if it was the spouse or one of the children. But the matter shared remains in my mind. She said, we can not continue dialysis anymore. allow us to take the patient home. It was a patient with Chronic Renal failure (CRF) and stopping of dialysis would lead to early mortality of the patient. I tried explaining this to the relative with a bit of irritation. She looked at me and said, we have sold our buffaloes, all our fields and extra land. All we have is the house we are staying. All our support systems for living are exhausted. We do not have any money for treatment, nor for us to survive. We have no other options and so we are taking the patient home. For me it was yet another patient who refused treatment and I send them home a bit irritated with them for refusing ongoing care.
But over next few days, the story continued to reverberate in my mind. I started looking at our data. We had started many on dialysis for CRF, but only a small percentage were continuing supportive dialysis. We have saved many lives but were continuing to support only very few. I was left with many questions in my mind. Where were the rest, were they alive or dead? Most likely dead, since there were not many dialysis facilities around those days. But more than that, by saving many lives, how many families had we impoverished? How many families had we pushed into poverty through the life-giving support systems we had provided? I never got answers for these questions because I had no desire to pursue these further. Because deep in my heart I knew the answers.
These were days much before the corporate take over of health care. Today catastrophic health care and impoverishment is a daily story in every city. I am thankful to that one relative who had the courage to stop me, a young consultant, and share her story. Wake me out of my insensitivity, lack of knowledge on costs of health care, and impact of health care on the family – subjects hardly discussed during our training. Teaching me such a lesson early in my journey. I hope I had listened to more such stories before that, but better late than never.