24 Nov How the Other Half Dies
By Tukaram Jamale, MD
Just at the closure of our OPD (Out Patient Department) in that hot and humid summer when we were discussing plans for the day’s admissions, Mr Ramesh Vichare was rushed in to the room by his son and wife who barely managed to keep him steady in the wheel chair. He hailed from the interior district of Western India, about 500km from Mumbai. His white pale skin was oozing from scratch marks and each of his limbs were about the thickness of a small tree branch. Prior to this visit, he was diagnosed with end stage kidney disease (ESRD) about a month ago and was supposed to start renal replacement therapy, which he didn’t have the means to pay for.
His son, who had brought him in that day, replied, “We just sold our dwelling to bring my ‘dada’ here. An acre of non-irrigated land (which is their only source of income) was re-possessed by the village head due to previous non-payment of debt. It seems everything has come due and we don’t have the money to pay for treatment right now. Dada is getting sicker day by day and we are here as a last resort for treatment.”
“We also don’t have money for my daughters wedding and dowry, which is very painful for me to say,” his small-framed wife said. She was there with them to help with the burden on her husband and to help out her son.
Our team immediately referred Ramesh for lab work when his results revealed abnormal results for blood urea nitrogen, an abnormal creatinine result and very low hemoglobin levels. As soon as I received the results, the team initiated dialysis treatment with blood transfusions and scheduled weekly patient counselling sessions with the family to ensure that both the family was educated on the issues as well as to ensure consistent treatment occurred.
Ramesh’s case was not the first time I saw delayed presentation of chronic kidney disease. He is, however, a good example of how patients with such a diagnosis struggle to obtain the care they need due to high costs of treatment. Over my career, I have realized that health illiteracy among patients is something I face daily; however, the exorbitant cost of rehabilitation is a much greater risk to receiving care in this region of the world. The biggest obstacle I face as a health care provider is to suggest treatments that provide no options to patients but to push his family into debts. And in many cases the best treatment is not financially possible for the family at all. Currently, state run dialysis programs are almostnon-existent and the cost of immunosuppression for transplants are out of reach of most citizens. Unfortunately, a diagnosis of ESRD still today remains synonymous with death sentence for almost two third of the Indian citizens.
My senior colleague always told me that “If you are diagnosed with ESRD, your survival is directly proportional to your bank balance.” Unfortunately, he isn’t wrong and many Indian citizens have to choose between food and treatment. He used to explain, “You have patients with advanced kidney failure. Dialysis can replace kidney functions and transplant is probably the best option;however, I know these patients must sell their house and farm or go into debt to pay for either of these treatments. Really, the third and only option for many patients is a conservative treatment. We must choose the treatment best suited for that individual patient rather than just the most effective treatment. We can initiate dialysis but in many cases, this option is not feasible long-term. Dialysis is the best clinical path but the reality is that it will eventually push entire family into a lifetime of debt”.
That day, we counselled Ramesh as well as talked through treatment options that were realistic for him and his family. These counselling sessions -like the one with Ramesh and his family-are by far the most challenging task of being a Nephrologist in India. They are more difficult than solving complex acid base problems, treating difficult nephrotic syndromes, or managing severe post transplant infections,
After Ramesh’s family had time to discuss treatment options, they approached us with their decision. Two out of three families we counselled that day opted for dialysis at a nearby charitable centre that helped provide treatment to those in need and we expected Ramesh to make the same decision.
Ramesh’s wife informed us, “I want to give my husband the best available treatment and if that is a kidney transplant, then I want to go with that option. No matter what happens to us financially, I will make sure it gets paid and I would like to donate my kidney to my husband for the operation.” I wasn’t surprised- such emotional reactions were not rare. We made sure to explain the need of costly immunosuppressants, lifelong compliance, and the large financial costs involved given that family was already in bankruptcy. We told her and the family to take some more time to really make sure this was the right decision.
Given the extra time to think it over, I was almost sure that the family would change their mind after seeing the large costs involved and select palliative care or dialysis at some charitable centre as a more viable option. I called the wife and son the week after their visit and to my surprise, despite all of the coaching and counselling to select the more financial vialble treatment, the family had decided to move forward with the surgery. I was struck by the resilience of the family.
A month later, a cheque for the full amount deposited into the hospital’s account for Mr Ramesh. To pay for the surgery, Ramesh’s wife had taken up a housemaid job for two families in a colony nearby hospital and his son purchased an auto rikshaw to drive as a taxi for 18 hrs a day to help make ends meet. The family did everything they possibly could to ensure that the treatment was paid for and that it didn’t put the family into further debt.
Finally, Mr. Vichare underwent a successful kidney transplant with his wife the donor and was successfully discharged from the ward. After the surgery, we called the family before they left the hospital for a final farewell and they all couldn’t hide their tears as they thanked our team. It had been a long journey for Ramesh’s family but they managed to get the transplant done and were successful in not going further into bankruptcy- something most families couldn’t accomplish.
“So Mr Vichare, your wife and son have given you a new life; what is next for you?” I asked.
“Tomorrow I’m going to work. I’ve got to make sure I can afford to help them if they ever need me.”
Tukaram Jamale, MD is physician practicing in India and was a contestant in the 2013 Costs of Care Essay Contest.