ABSTRACT
There is a lot of unrelieved pain in developing countries. Here is a story from Bali, Indonesia, about a woman with advanced malignancy, who is in unbelievable agony. Expensive chemotherapy is available to her. But although the necessary medications for relieving her pain are available in hospitals, they do not reach the patient, in her home, or even when she is admitted to the hospital, because of ignorance of the medical profession about pain management and because of unnecessary regulatory restrictions. The woman's pain affects the whole family, endangering the family's income and the future of her children. The intervention of palliative care during part of her life gives her some relief, only for the agony to be repeated by pointless chemotherapy and neglect of the suffering during admission to the hospital. Whatever relief could be given to her was because of the intervention of a volunteer with no schooling in medicine or palliative care.
M. R. RAJAGOPAL'S NARRATIVE
“Beautiful” is the only word that can describe Bali, the Indonesian island—not only because of the green natural landscape and lovely beaches, but also because of the inner beauty of the people. They smile; they fold their hands in greeting and exude friendliness. “Yes, Yes. It is all beautiful. But do you want to see the hell within this heaven? Come with me to the General Hospital tomorrow,” said Kurnia.
The year was 2010. A large oncology conference for South East Asian countries was going on in Bali. There were over 600 registrants; but the hall seemed to have only around 200 in there. Ravishing Bali had lured everyone else away! I was attending the conference and also meeting up with Ms. Kurnia Ito with whom I had struck up an acquaintance over e-mails.
Kurnia Ito is a successful Balinese businesswoman, who exported handcrafted garments to Japan. Success notwithstanding, at some point Kurnia found herself wondering, “Why am I doing this?” True, she was making profit. But what did it matter? Her married daughter was a businesswoman herself and no longer needed support. What would be the meaning of a life aimed only at profit?
One day Kurnia came across an acquaintance in severe pain from advanced ovarian cancer. Kurnia spent 2 hours talking to her. The woman talked about her pain, about how she was tired of it all and how she wondered if she was being a burden to everyone. When they parted, the friend said, “For 2 hours, I had forgotten about my pain and all my suffering. Will you come again?”
That was the beginning. Kurnia browsed the Internet to learn about cancer and came across the phrase “palliative care.” This was what the friend needed, she thought. Why was she not getting it? That was a new train of thought. Kurnia met many doctors. But they were all practicing in hospitals, all learned people. What could Kurnia, a layperson, do? If she had come across a beaten track, she could have followed it. But there seemed to be none. It was up to her to strike a new path.
Kurnia put up a sign on the back of her car, “Bali Cancer Care Community –Care for pain –Care for suffering –Care for the spirit.” Below this, she printed her mobile phone number in big and bold font. Some people would call. Some would want help to take a patient to the hospital. Some may want financial help to buy medicines. Kurnia would do what she could. But more than that, she would listen to them. She was not clear about what else she could do, but she was not prepared to wait till someone could bring clarity to her. There seemed to be no one who could do it, anyway.
Today she was going to visit Rini. Rini's husband Arman had caught sight of Kurnia's car sign and had requested her help.
“Can I come along?” I asked. Kurnia's face brightened. She really had wanted to ask me whether I would see Rini but had not wanted to trouble me. “You will come? Sure? Can I tell Rini?” Kurnia asked.
“Yes, please ask her for permission for me to join you,” I said. “No permission is needed,” Kurnia replied. “You would certainly be welcome.” Nevertheless, when I insisted, Kurina rang Rini up. She was in too severe pain even to talk. But her husband Arman readily agreed.
It was a long drive in Kurnia's car. Winding narrow lanes eventually led to a small house. We could hear groans of pain even before the car had stopped. We passed through a tiny neglected garden that must have been lovely at one time. We stepped in to a three-room house. For furniture, all that the living room had was a mattress for visitors to sit on and for Rini to roll in pain. Rini was 36 years old and had cancer of the colon. She had gone through a surgery and now had a colostomy. She had had some chemotherapy but now that did not seem to be working and, if anything, seemed to be part of the problem.
Palliative care doctors see a lot of pain. But I had not seen many people with pain of this magnitude. Here was suffering at its worst. Rini would attempt to sit down one moment, fail, and try to stand up, but then would bend over to a side, her body totally refusing to obey her will. With those movements came her cry of agony—not too loud; she was obviously too weak to scream. Still bent over, she crawled to the bedroom and tried to lie down; but failed. Her body arched backward like a bow, the small of her back on the edge of the bed and her head almost touching the bed. How could the creator have thought up such suffering!
She was receiving pain medication. She had been on diclofenac tablets for some time. Kurnia had nagged some doctors till one of them wrote a prescription for sustained-release morphine (MST). The pharmacist would dispense only 10 tablets on prescription by an “ordinary” doctor. A specialist's prescription could fetch 30 tablets at a time; but such a prescription is not easily achieved. Inexpensive immediate-release morphine was not stocked by the pharmacist.
Rini had been asked to take one tablet of 10 mg MST twice a day. But that was nowhere near enough. Arman would give up to six tablets day on the sly and feel guilty about it. “Did the tablets seem to be doing any good?” I asked Arman, with Kurnia acting as an interpreter. Rini called out in her weak voice, “I am alive because of these tablets. Without them, the pain would be even worse. I cannot even imagine life without them.”
Kurnia had gone to the doctor asking whether anything more could be done. No, she was told. “Continue one 10 mg tablet twice a day and strengthen the mind with meditation or Reiki,” was the advice.
The fact that morphine was doing some good seemed to be the one bright spot in the whole situation. Rini's pain should respond to a higher dose of morphine. I tried to talk to Rini; but the pain seemed to be getting even worse and she was no longer able to give attention to anything else. I talked to Arman through Kurnia and explained that the dose of morphine needed to be increased. I wanted him to give her two more tablets. But Arman was afraid. Finally he mustered the courage to give two more. During a minute in which Rini's body had come back to a straight line from the arched position, I examined Rini's abdomen. It was swollen and her colostomy had prolapsed by almost a foot. I thought she should have some dexamethasone to reduce the peritumor edema. But I have no authority to prescribe a medicine in that country. “That does not matter,” Kurnia said. “Just write down the name of the medicine and the dose. You don't have to sign it. The pharmacist will give it without prescription if it is not morphine.” This sounded very familiar to me. Just like at home in India!
Rini's distress was worsening. This was the worst of not having immediate-release morphine, which would have started acting in half an hour. MST would take hours. In the meantime, Rini seemed to be trying to sit down, stand up, and lie down all at the same time. She tore off the sarong that was wrapped around her waist and tried to find comfort in sitting naked on a basin of cold water. She seemed to be more like a captive animal being tortured than a human being. And her two little girls, seven and five, watched all this with eyes almost devoid of expression, homework in their hands. What all thoughts would be going through those two young minds, and what scars would be forming in them? Would those scars grow with the girls?
The same law controlled the supply of both immediate-release and sustained-release morphine. Why was MST available in pharmacies, whereas immediate-release morphine was not? And why was morphine lying unused in the government hospital while people like Rini were in pain? How can one forgive the heartless system that permits this to happen, whether it be in Bali or anywhere else?
On our way back, some 7 miles away, Kurnia stopped the car at a pharmacy and bought MST and dexamethasone. I secretly wished that Kurnia would turn the car around and take the medicines to Rini. But I said nothing. Would it not be too rude to suggest it? As we sat in a seaside restaurant enjoying delicious Balinese seafood, the image of Rini rolling in pain refused to go away.
Later that night, Kurnia's call came. After dropping me at the hotel, she had gone straight back to Rini to hand over the tablets. She confessed that she had wanted to do that as soon as she had bought the medicines. But she did not suggest that for fear of delaying my dinner.
Kurnia called again from Rini's home the next day. Rini was almost completely pain-free with the dexamethasone and the increased dose of MST. Rini wanted to talk to me. There was silence on the phone for a minute. Kurnia came back on the line. Rini was crying. She had wanted to thank me, but could not speak English. She had slept last night for the first time in several weeks.
Rini slept, but in Bali, in India, why, in most of Asia, Africa, Latin America, Eastern Europe, and the affluent Middle East—through more than 80% of the globe, how many Rinis and Armans and little children would be going through such sleepless suffering! And all because of needless regulations and a greedy, insensitive medical system.
KURNIA ITO'S NARRATIVE
I did not visit Rini for a week after finding her peacefully asleep after the new medication. Then Arman called me. Following my advice about how to get free treatment, he had taken the required certificate to the hospital office to get it stamped. He had to wait a long time to get it stamped, and by the time he got back to the outpatient department, it was beyond the scheduled outpatient time; they could not see Rini. And the stamp on the certificate was valid only for that day. So he went very early the next day, stood in line, and got the stamp early enough, but then the clinic would not see her because her appointment was for the previous day. They could give her another appointment only after another 2 weeks. Arman went and talked to a doctor who had seen Rini earlier. But he could not help; it was not his department.
I could not find any words to console this young couple. What a cruel system! I have a question in my mind. Does seeing a lot of diseases and suffering numb doctors’ minds?
Two weeks later, Rini finally got her consultation. As they found her pain-free and as the swelling in her tummy was less, they advised more chemotherapy. But was the improvement not because of the dexamethasone and the pain relief? Will more chemotherapy really help or will it worsen her condition? I did not know. Anyway, they admitted her to the hospital for chemotherapy. I visited her. Even before I reached the ward, I could hear Rini screaming. She was in pain because the pain medicines had been stopped. The ward nurse did not seem to know much about pain relief. He would give only 10 mg MST twice daily and also an infusion of pethidine (meperidine). He said both were at the maximum possible dose. I whispered to Arman to give her two more tablets of MST. He did and thereafter Rini was a bit better.
I visited her children in their home. Fortunately, Arman's mother had come over for the time being and was taking care of the children. I also asked Arman to sign a petition to a well-known charity club for assistance, although I was not too hopeful. It seems easier to get people interested in cute cats than in terminally ill people in pain!
After a few days, I returned to the hospital to visit Rini. She had bathed and applied some make-up and was looking good. The MST and clonazepam seemed to have made her a bit sleepy, though. Later, I went to one of the specialist doctors treating her. I did not go alone; I took a mutual friend with me. That was good strategy. He was a bit friendlier than usual. “If you want to help Rini, lead her to God,” he said. “Prepare her to face death with dignity.”
How she can have dignity if she is rolling in pain, I asked myself. Forget it, I added to myself; the important thing is that the introduction of the mutual friend to the scene may make the doctor kinder to Rini when he sees her next time.
Then the two of us went to meet Arman. We conveyed the bad news about the prognosis to him. We did so not in the blunt way the doctor had talked to us, but sensitively. I also went to meet Arman's boss. I explained to him about Rini's situation and extracted a promise from him that he would not fire Arman even if he is irregular. These are the little things that I can do. How will the two children eat if Arman loses his job!
Finally, Arman decided to get the urinary stent changed, although the doctor was not enthusiastic about the procedure. I told myself to go along with Arman's decision; he was clutching at every straw.
When I visited Rini next, she seemed to be rather peaceful. She held my hand, with gratitude showing in her wet eyes. I gave her a prescription for sustained-release morphine (this prescription from the doctor is the hardest thing to get!) and some money.
The subsequent week, I accompanied Rini when she was getting her next palliative chemotherapy. She had obviously deteriorated. There were strange ulcers on her body. There was an obvious bulge on the middle of her tummy. Her disease was worsening! She had also become very irritable. However hard he tried, Arman could not please her. He was no longer able to bear the pressure. Rini had pain all over the body and was crying most of the time. Even touching the skin caused pain!
She had the chemotherapy anyway. She had to spend 18 hours in the emergency room before she got a bed. She was able to talk now over the phone and was complaining less. She was now having fever off and on. I asked her to present one of her beautiful smiles to her doctor and see how he returned the smile. Rini laughed over the phone.
I had never studied palliative care formally. I just say and do things that come naturally to me. I told her to forgive me if at any time my words or actions annoyed her. When the conversation turned to the subject of my own health, she responded quickly and with passion, “No, no, nothing must happen to you. If you fall ill, who will be there to help people like me? I shall pray for you. Always.”
I got an anonymous call from a potential donor asking what she could do for me. I told her that all my focus was on Rini now; whatever you can, give to her. The person sent some milk powder and fruits to Rini. Really an anonymous angel.
I thought Rini seemed more comfortable in the hospital. Back in her own home, her only company was her enemy, her pain, in her little room! But then the next time when I called and Arman picked up the phone in the hospital, I could hear Rini screaming in pain in the hospital ward. One tablet of MST a day and an injection of pethidine were all that she was given. I advised Arman in confidence to give 20 mg of MST without the nurse's permission as the doctor had advised it earlier. When I gave the confidence, Arman did it. How longer could she be kept free from pain? The cost of MST was putting a hole in the family's pocket.
The next time I saw her she was no longer quite herself. She did not recognize me. I was told that she would wake up at times only to scream aloud. During one of those paroxysms, she fell off the bed; the nurse had to give her an injection to calm her.
Her kidneys were failing and her consciousness began to wane. On the 5th of May, 2010, Arman brought the children along to bid goodbye to their mother. He asked her forgiveness for all his lapses and forgave her. He promised in her ear to look after the children. Rini then shook once and took her last breath.
I felt sad; not only because she died, but also because she died without dignity.
Five Years Later
Now in 2015, things have changed for the better. The general hospital has a proper palliative care unit and a palliative care ward. Perhaps the day is coming when people like Rini can live and die with dignity.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.