Bed number 4 at the AIIMS trauma centre’s neurosurgery ward in the city has been 15-year-old Mohammed Javed’s home for the past two and a half years.
Javed cannot go home to Jharkhand’s Hazaribagh district because he is paralysed neck down and needs ventilator support to breathe.
His brain is fine and he can speak haltingly, but he cannot move his body and limbs.
Javed spends the days watching cartoons and his favourite actor Salman Khan’s songs on a mobile phone with his mother and older brother a fortnight every month.
“We don’t know how exactly he got hurt. He went out to play with his friends in the morning and they brought him back in the afternoon with no movement in his arms and legs,” said his mother, Abida Khatoon, who moved to Delhi with her husband and four other children in 2013 to be with Javed. “Doctors there did an MRI and asked us to take him to AIIMS in Delhi.”
Each day, about Rs 10,000 of taxpayers’ money is spent on keeping him at the hospital, when the cost of keeping him at home on a ventilator would be about Rs 500 a day.
A surgeon said the teenager may have suffered a fall that broke his neck. As his spinal cord has suffered irreparable damage, Javed will remain paralysed below the neck permanently.
“Unfortunately, a spinal cord once damaged cannot be repaired with surgery. For Javed, the life-saving procedure was done immediately and he no longer needs any active treatment,” says Dr Deepak Agrawal, additional professor in the AIIMS department of neurosurgery.
While India’s treatment facilities and outcomes are at par with the best in world, rehabilitation and hospice services are missing. In cases such as this where the patient is never likely to recover, passive euthanasia could be considered, say some experts.
“If ventilator-support is stopped, his condition will gradually deteriorate and he will die. This is not active euthanasia as the patient is not being killed, but passive euthanasia. Most of the patients who leave hospital to go home die within six months,” said a senior doctor, requesting not to be identified.
Patients like Javed need a rehabilitation facility or a robust home-based care, which his family — his father Mohammed Akhtar is a garment embroiderer — cannot afford.
“He doesn’t need hospitalisation and can keep going with a portable ventilator at home, but since his parents cannot afford one, they are refusing to take him home,” said Dr Agrawal.
AIIMS is trying to generate money to buy Javed a ventilator, but the hospital receives dozens of such cases each day.
“We have got Poor Patients Fund and if people donate for that then we might generate enough money in a year to help such patients. People should know any money donated to AIIMS for patient care gets them 100% tax exemption and for research purposes it’s 175% tax free,” said Dr MC Misra, the director of AIIMS.
About 150-200 accident cases are brought to the AIIMS trauma centre every day, of which nearly 40% have head injuries and 20% need ventilator support to stay alive.
At any given time, seven to eight beds in the neurosurgery department are occupied by patients like Javed who don’t need active treatment.
Families usually take people home but Javed’s parents are refusing even after two and a half years of hospitalisation. The trauma centre is forced to turn away eight to 10 accident cases each day, owing to shortage of beds.
“We could treat 5-6 more patients every day if we had an option of shifting long-survivors not needing active treatment to rehab or a hospice, as is done overseas,” said Dr Agrawal.