1. “The guard could not tell if it was my child.”

The boyish patient, a young adult, has just arrived in the “Surgical High Dependency Unit” from the ICU. He rests on a pillow, nasogastric tube in nose, bare belly with a colostomy bag sticking to the skin; a bag of urine suspended half way down from the bed. A plastic tube trails up to an iv fluids bag hung upside down. His sister and a man at his bedside linger self-consciously around this transformed young man.“They have not given you anything to eat yet?”the sister asks.There are other words. Silence aches when a person is metamorphosed into the other in illness. The patient is hoarse and inaudible across the room where I linger at the nurse’s desk to give them time to be together before I step in with my questions regarding their ICU experience. This is for a study designed to detect perceptions of ICU visiting hours by family, patients and ICU staff. When I finally introduce myself to hand him my study’s information sheet for consent , I ask which language he will read. “Any,” says the sister. “Bright boy,” I remark. Reading English, Punjabi and Hindi equally well has been uncommon in my study experience the last few months. “Yes, he works in a bank,” says the sister. She summons their father inside for me. The other man has left. The father wears worry like a mask. His demographic info: eighth grade education, laborer in a hosiery factory. His son is an assistant manager in a corporate bank he kvells as I insert some small talk. The father and I sit in the doctor’s duty room for privacy as I fill my questionnaire. He expresses extreme dissatisfaction with the ICU visiting hours .He narrates one bad day in the ICU when the guard told waiting families that visiting hours were postponed as there were four critical patients being revived. He could not tell if “my child is one of them.” The father did not find out until hours later. He rephrases this a few times, as if repeating it were healing. I understand. I have repeated many a narration the past few years as my parents have been treated in various hospitals. I don’t narrate to him how years ago, my mother lay in heart failure in a doctorless ICU on New Year’s Eve in a small private hospital. The doctor had left town to party. No visiting hours. Visiting minutes: twenty minutes once a day. No doctor for two days. I must move on to the son now for his answers to my study questions.

2. Prayers by the hospital

Another day. I approach the bed on which this second patient sits cross legged. There are wooden benches by the ward beds for visitors. A demure lady stands by the bench. “Yes, my wife,” responds the patient to my query, smiling. He looks healthy. “Before they started my angiography, they did their prayer.” He is referring to the Christian prayer in Hindi. This hospital has a live prayer on the public address system twice each morning as well and, as I have just learnt, before angiographies. Prabhu, everyone’s hope, wish - keep it strong in your hand. We pray for all. Parmeshwar bless everyone—- “They must have seen my gaatra. So they prayed. I joined them in prayer. I will never forget that. I am fine now. Ready to change my diet and life,” he grins. The gaatra, also known as the kirpan, is a small sword worn at the end of a belt across the chest by baptised Sikhs. Besides unshorn hair and beard, it is one of the outward signs of a baptised Sikh.
In India, secular has a different meaning. You join in prayer whatever religion is its source.

3. LAMA

I am in another ICU of the same hospital to get the list of patients transferred out to later interview them and their families.A screaming man lies in wrist restraints. His body intermittently pulls itself to the right, almost touching the bed rails; his trunk bows. The arrows are his screeches. Then he straightens for some seconds until the body is a bow again. A male nurse stands five feet from his bed as if the man could bite. Two junior doctors watch at the foot of his bed. The man screams like an alley cat in the night. It is a screech that is not human. It has dehumanised him so completely, no one is offering help. He is a spectacle. I am in distress now. “Any pain medicine he is getting?” I ask the nurse in a voice that is amoral in its calmness. “No he has been like this all day. Nothing.” “You need to insist the doctors provide pain medicine,” I say. “He is suffering.” “A diagnosis had not been made.” I call out to the young doctor in training to order pain medicine. He is one of the two standing at the foot of the bed watching as if mesmerised into inaction. “Morphine ,maybe,” I shrug as I say.“That looks like tetanus. Have you thought so as well? Opisthotonus.” I do not practise medicine outside the States and miss not being involved in diagnosis and treatment in India where there is tetanus, there is snake bite and other rare conditions I have never diagnosed in the global north. “Ok. Yes,” says the young doctor, his eyes widened by the strange scene.Then he walks off to another bed. The screeches go on for some more minutes.
I watch. No action. The patient has no one by his bed now. The screeches have turned to lowing when I leave the ICU. I am shaken. I make a mental note to ask the attending doctor later. I write in my journal that evening, but I never ask the attending doctor. Next morning, I hear this man’s family has taken him LAMA .

4. Awakens at home

LAMA they call them here. Left Against Medical Advice. They are never angry, these relatives . They are resigned.Their patients are ill, needing long ICU stays.With many ailments, treatment is often wait and watch as the patients lie unconscious on ventilators. Let the brain heal itself, the neurons awaken, sometimes inexplicably. Then there is the learning to sit, stand, walk in rehabilitation. Days pile up. Expenses mount. Relatives sit outside the ICU on chairs or sleep on mattresses laid in a large room close by. I never see them eating. They sit silently.They live on luck. But luck stretches only so much for many. The ICUs have guards who regulate visitor traffic. 7 am - the visitors stream in one at a time through the ante room for a half hour. The next family meeting is at 11 am. Then 6 pm. They sit on steel chairs all day, and if their loved one, the patient, inhabits the penumbra dodging death, they sit on the chairs all night or stand in groups. Many cycles of dusk, dark, dawn, rounds, news. In my transfer list today, there is a patient leaving LAMA. The ICU guard offers to find his relative from the crowd sitting in the steel chairs enclosure. I have seen the hospital pastor lead prayer by this enclosure many times. The son of the patient, a strapping young man, well dressed and surrounded by five other men approaches from the far hall. Here in Punjab, everyone is well dressed. The son says he is taking his dad home. The other men have been helping out. No tear stained face. No anger. “He is not gaining consciousness.We cannot afford a prolonged ICU stay.” Minutes after I begin interviewing the son, he answers a brief phone call. Then he says he has to go.I see the patient being wheeled out; the son joins the gurney, walking behind the nurse who is squeezing an ambu bag to inflate the patients lungs for breaths, the ventilator now disconnected and left behind in the ICU. Next morning, to complete my interview and eager to hear the outcome, I decide to call the son. I pause while dialing. I get words ready- words one uses to tread on eggshells. I anticipate hearing the patient has died. A clear voice answers the rings. “How is your father,” I ask. He is fine says the son matter-of-factly. A ventilator was arranged in the house. A warm wave passes through me. “He is awake, he moves his eyes around. A nurse and a man will be in attendance.” For some moments, I hear loud voices in the background. I imagine a family reunion. The son goes on to answer my questions without inflection. He takes time with detailed comments. He praises the extensive care received in the ICU. I write vigorously, not wishing to miss a word. Is his voice singing?

5. Gods, beds and luck In the quiet ward next to the CCU ( the cardiac ICU), the mood has undertones of cautious relief. Family members sit by the beds after anxious days sitting outside for news from the CCU. This ward is where patients stay a day or more before discharge. The patient on bed 2 is in his mid fifties. He readily assents to answer my questions. His granddaughter, who must be ten, sits by him and listens avidly. He never went to school. She is a topper in her class. She fetches her father when I am done. Occasionally a junior doctor stops by the beds. There is mild chatter from other beds. The son has an eighth grade education. He, like his father, expresses their satisfaction with this ICU experience. “The doctors know the illness, the patients are healing, so must not be disturbed,” he demurs, implying that they are fine with the limited hours- ninety minutes a day over three slots. "His heart rate was low when we got here. They put him on the ventilator and took him inside the CCU. Let us work on him and we will let you know later, they said. After some hours, we found out he was fine, he would be fine.” says the son. Dengue, a mosquito borne viral illness, has had high incidence this summer in north Indian cities.“Our hospital sent us to DIMS,”he says, naming the other academic hospital in the city.“The doctors told me they had no ICU bed. They could treat my dad inside the ambulance as if it were a hospital room but that was a risk we took and on our responsibility. We just left and drove here.” Lives hang precarious here in the global south. Luck has more bearing on survival of the sick than any other ingredient. I look at the dad some beds away. He sits in bed alone. He looks well. “Parents are paradise. Mine was restored by Dr G. Dr G is my God.” The son is tearful now, reliving the recent unknown. We were similarly lucky in that doctorless ICU where my mother lay years ago on drips compensating for her poorly functioning heart muscles, my visits restricted despite my profession. I realized such restrictive visiting hours dehumanise ICU care by further taking control from patients and families, and the idea for a study on patient and family perceptions of restricted ICU hours—with the hope for pursuing humanistic ICU care for all—germinated there. A visiting cardiologist I met in that same hospital days later eventually treated my mother in New Delhi and her heart function was restored after bypass surgery. It was a stroke of luck, our paradise restored for now.

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