Hope of an end...

"I do not want to go to the Government Hospital again. Please don't send me there. Send me home. I would rather die at home", these were the desperate pleas of Mr. G, a 50 year old man in our clinic yesterday. Seeing and interacting with Mr. G put us in a major ethical dilemma. The collective empathy of all the clinic staff could not arrive at the ethically right course of action for him. 

Mr. G lives in a village near our clinic. He has a disease where the blood vessels in his lower limbs were not working well, thus compromising the blood flow to his legs. It all started as rotting away of his toes several years ago. We had referred him to the Government General Hospital (GGH) in Chennai. They did extensive tests and found that the major arteries supplying blood to his lower limbs were occluded. Over the past 6 years Mr. G has undergone 8 surgeries of the blood vessels in his lower limbs. Gradually parts of his feet and legs were amputated and removed as they had died due to lack of blood supply. The occlusive arterial disease of his lower limbs was progressing relentlessly. A few months ago, he had come to the clinic with acute abdominal pain and severe pain over the stump of the below knee amputation of his right lower limb. The left lower limb had already been cut off below the knee a few years ago. We referred him on an emergency basis to the GGH because there was a possibility that the occlusive arterial disease was now affecting his intestines also. He was admitted in the GGH and this time they had to cut off some more portion of his right lower limb above the knee. Mr. G, remained in the hospital for 3 months during that admission. 

Mrs. G, his wife, narrated the horrifying story of their hospital stay and their 'escape' from the place. "He would cry throughout the night in pain. Nobody would come to help him. Even if the nurse came and gave some tablets, the tablets never helped him. For the entire 3 months, I did not eat, sleep or rest properly. It was the most traumatic experience for him and for all of us. The doctors would come on rounds. They would spend a lot of time with other patients, but when it is our turn, they would just wave their hand and quickly rush past his bed. The wound stump in the amputated area did not heal and it had started rotting. For three entire days they never did any dressing. They also never told me anything. He was lying like that unattended on the bed." Saying this she broke down and started crying. 

Mr. G's blood vessel to the amputated stump of his right lower limb had also blocked and so the stump was also undergoing damage. The stump had gotten infected and pus had collected. In order to let the pus drain, the doctors had removed the sutures and had also pressed the stump to force out the pus. But this had led to extreme pain. Mr and Mrs. G did not understand why the doctors were cutting open the wound and pressing and squeezing when he was in so much pain. A simple explanation would have helped understand, but was not provided, or even if it was provided, they were in no frame of mind to understand or internalise it. Someone in the hospital had advised Mrs. G to take her husband back home, at least Mr. G would die in peace. So Mrs. G had mustered all her courage and brought Mr. G back home against medical advice. 

We are the closest health facility to Mr. G's home. So last week, Mrs. G had come over to ask us to visit their home. My friend had gone to their home to make a home visit. The margins of the stump of the right lower limb which was amputated above knee had started becoming black and pus was oozing from the wound. There was no way to do such a major dressing at home as the whole rotting flesh was exposed along with bones and muscles and blood vessels. If any blood vessel got nicked, it would lead him to instantly bleed out to death. So she called her colleagues in the GGH and arranged for immediately referring him there. It was a distressing experience for us and we went back home that day with a lot of worry. 

Yesterday Mrs. G brought her husband to our clinic and laid him on the examination couch. The entire room was filled with the stench of rotting flesh. Mr. G was lying there stripped of his dignity, resigned to the painful existence. When I entered and started examining his wound, he implored with so much pain to just let him go. The stump was gangrenous, it was black and pus was oozing liberally. The only way we could save his life was to send him back to the GGH, post him for surgery and remove the gangrenous parts. But when we explained this to Mr. G, he refused. He said, he doesn't want to go for any further surgeries. "Now they will remove the remaining part of the leg, then again some more parts will rot, then what will they remove? Please give me something for the pain and send me home." 

Here was Mr. G with a life threatening limb gangrene and infection. The infection could spread any moment and lead to his death. But infection and death was imminently preventable if we cut off the dead limb. I was repeatedly asking both Mr. and Mrs. G what their plan was if they do not go to the hospital to have the dead limb removed. Mr. G broke down and kept repeating that he would rather die. They kept repeating, send us home. The whole clinic staff gathered around them and tried in all possible ways to convince them to go to the GGH. They were reluctant. We took the wife aside and spoke to her. We dressed up the wound, gave him a shot of painkiller and sent them home with a letter of referral to the GGH. But we don't think they are going there. 

On our way back in the train, my friend and I were reflecting about Mr. G with a lot of emotional distress. Mr. G was otherwise healthy. He was eating, speaking, his bowels and kidneys working. I was saying, "If only we could convince him to go to GGH, and get the remaining part of the stump removed, he will have a fair chance of a life." My friend in all her wisdom told me, "What next after removing the stump and saving his life? What quality of life does he come back to? The poor and disenfranchised in our country have nothing to look forward to in terms of quality of life even if they have their limbs in tact. What quality of life will Mr. G have without his entire lower limbs? Who will be his caregiver? His wife and daughter will be stuck in a permanent trap caring for him. Their life, which is currently in a stand-still will continue like that. If the dead limb and infection is left there, at least there is a hope for the infection to spread and kill him. There is an end point to the suffering in sight. He does not want to let go of that end point. If he gets cured now, the life of misery will continue with no end point in view." I started arguing about value of life, importance of rehabilitation, whether persons with disabilities have a right to life and so on. But even as I started arguing all that, I realised the futility of all that in a typical resource limited setting for people living in abject poverty. We resumed the rest of our train journey in silence, deep in thought about the ethical dilemma and our helplessness in this situation.