(16 May '00)
The Pain and Palliative Care Department is a totally charitable service dedicated to giving comfort and care to patients suffering from terminal cancer. Although 75% of cancer patients suffer a lot of pain, most of this pain is manageable with proper medicines and care. Anyone can attend the outpatient clinic. The service is free of charge and receives donated drugs. Patients with diseases other than cancer are also welcome. A first session with the doctor often takes up two hours to completely identify all the patient’s problems. More than 50% of patients are very poor with serious family and financial worries. They often conceal their feelings at first because nobody ever really bothered to listen to them before.
Dr. Ajitha and Dr. Sanjeev are devotees of Amma, a husband and wife team who has been working in the field of home care in the villages of Northern Kerala. At AIMS, they ask for a bare minimum salary — just enough for their livelihood — and are dedicated to giving a charitable service under the umbrella of the AIMS infrastructure.
Every morning they visit patients in their homes to care for the sick person and also to educate the family members about the medical aspects of the disease so that they also can apply dressings and administer drugs correctly. Above all, they help the family with all the social and emotional problems they face.
It is very unusual in India for doctors to visit patients in their homes, yet they travel up to 30 kilometres for some home visits.
Dr. Ajitha: “Ultimately the way to pain management is through relaxation. But to achieve relaxation we have to account for many factors. We use a fourfold approach that acknowledges the physical, psychological, social and spiritual aspects of the patient’s circumstances. If we can relax the physical body to the maximum extent possible through drugs and by adopting different positions for lying and sitting, then gradually we can introduce other ideas like mental relaxation techniques to deepen the process. If the patient is accompanied by a relative or a friend who also understands the process, the patient finds it easier.
“Our first task is to listen to the patient and learn from them. This in itself will help the patient as often they have been left for months or years without proper care or being able to express themselves. Patients become very depressed. Their condition, especially if they suffer disfiguring head and face cancers, makes them isolate themselves, even from their children. They become withdrawn, angry, and aggressive and it may take several visits before they will open up and cry with us. Then we can tell them about the disease, what to expect, what food to eat, what medicines to take. They can also discuss with us the things they want to achieve before they die.
“Relatives feel it is easier with our support. They learn to keep a positive attitude. Although the situation they face everyday may seem daunting, through faith and spiritual counselling we help them.” Recently a third doctor, Dr. Krishna Kumari, joined the team. They are assisted by three nurses and two social workers. Amrita Yuva Dharma Dhara volunteers frequently provide part-time help. Home visits are conducted within a 30 km range of AIMS hospital.
Often the patients are deeply moved by the care they receive from the AIMS team. One 65-year-old man began to weep when the doctor sat with him. “How can I thank you?” he said between tears. The doctor had no words. He simply took Pavitran’s hand in his own and softly stroked it. The man was in the final stages of his illness and only a few days to live.
“One thing we are able to do by coming out to these homes,” says Asha, “is to educate the families about the disease. Many families are afraid that the cancer is contagious and are hesitant to get too close to the patient. Then they see us, and our lack of fear helps them overcome their own.
“Also, if we show them how to clean a wound in the hospital, or how to change a dressing, the family may still be intimidated to do it when they return home. However, when they see us do it in their home, they feel more at ease and develop more confidence that they too can do it.”