Why is it that we don’t ensure care and treatment to the poor with mental health problems?
He has a shy winning smile, a lanky frame and rakish hair. Picked up repeatedly for housebreaking, the teenager spent many years trying to run away from various observation homes for children in conflict with the law in Delhi. We offered to care for him instead in an open children’s home, on the condition that we would not lock him up because we do not believe in locking up children. Let us call him Rajesh.
He chose to stay with us, although our gates are unlocked, and we grew fond of him. He spoke little about his family, except that his parents were dead. His brother drove a bus, but he had broken ties with him. As he grew into adulthood, he shifted into a group home for young homeless adults. Unlike most other former street youth in our care, he was reluctant to study.
Quite abruptly, his behaviour changed dramatically. His housemates reported that he suddenly became suspicious of them, accusing them of plotting against him. He started hearing voices. It was apparent that he was engulfed by full-blown schizophrenia. My colleagues took him to IHBAS, the mental hospital in Shahdara. The doctors met Rajesh in the OPD, prescribed medicines, but said they could not admit him as they had no spare beds.
He returned to his group home, where his housemates and the staff tried to engage him. He played a game of chess, but was mostly quiet. The next day, no one quite knows what exactly happened. But possibly in response to his hallucinations, he fell from a height, and badly hurt his head and body. An ambulance shifted him immediately to the Emergency Unit of AIIMS, the country’s premiere tertiary care and research hospital. Doctors worked on him diligently, and declared him to be out of danger. Eight hours later, after midnight, they asked that he be shifted to the neurosurgery department of Safdarjang Hospital.
The boy was obviously in great pain, groaning continuously and still hallucinating, lashing out at the doctors. His housemates, former street boys themselves, kept continuous vigil by his bedside: more caring than brothers. But to our surprise, within eight hours, the doctors at Safdarjang again discharged him, suggesting that we take care of him at home. In desperation, we returned to IHBAS, where a personal intervention at senior levels of the hospital administration ensured he was finally given a bed in IHBAS. He responded to the treatment and improved visibly in a couple of days; he was calmer, and his pain more bearable.
However, after two days, the IHBAS doctors again asked for Rajesh to be sent to AIIMS, because of neurological complications. The AIIMS doctors declined to take him in, and referred him this time to another major public hospital in Delhi, the RML Hospital. We took Rajesh there; the doctors again refused to admit him. Finally we took him back to IHBAS, and pleaded that they readmit and treat him there. This is where he is at the time of writing. But, I worry, for how long?
I feel an intense disquiet about the fate of dispossessed young people like Rajesh, who can experience mental illness like anyone else in the society. Recent advances in medicine ensure that most mental illnesses can be treated professionally and compassionately, and patients have a good chance of recovery, especially when there is early intervention. But if untreated, they can either harm themselves or others grievously, or the illness results in their losing skills of holding relationships and jobs.
Thirty years earlier, what would have happened to Rajesh? Instead of the modern and improved IHBAS, there would have been the classical mental hospital, in which patients were chained, often naked, given electroconvulsive treatment, and detained frequently for years. Rajesh would not have been turned away, he would not have been left to cause harm to himself, but the treatment would have broken both his dignity and spirit. He may have stayed forgotten in the hospital for many, many years.
Human rights concerns are rightly pushing such mental hospitals into history. But what have these been replaced by? As our experience with Rajesh demonstrates, none of our major public hospitals is willing to take responsibility for his care. Despite many efforts and the goodwill of carers, he has been tossed from hospital to hospital even though he acutely needed medical care for schizophrenia, combined with grave skull and bodily injuries. He has also shown that people with mental illness can harm themselves, unless treated and relieved of the delusions and hallucinations.
Caring for persons with mental disorders has always been a challenge, in all countries. Over the last 200 years, incarceration in jails up to the 18 century gave way to asylums in the 19 and 20 centuries, to instances of care in general hospitals and in the community in the late 20 and 21 century. But Rajesh’s experience reflects the realities of patients whose caregivers are poor, who cannot afford the costs of hospitalisation and long bedside care at home, especially of difficult or unruly patients.
There is clearly a deep ethical crisis in caregiving professions like medicine and psychiatry, and in the idea of a caring state. For people in distress who have no money to offer, we witness an unconscionable abdication by professionals, both public and private, and by the state.
I believe that persons who suffer grave physical and mental health problems should receive care as a right. The law must prescribe a legal duty to provide care, and to deterrent mechanisms to punish professionals and institutions who fail to do so. The right to dignified, humane and assured care cannot remain a function of one’s wealth, influence or power.
Why is it that we don’t ensure care and treatment to the poor with grave mental health problems, as though they do not matter?