Families struggle to care for walking dead
The families of 10 out of 200 patients in a vegetative state with no hope of recovery, ask for active euthanasia, shows data from the All India Institute of Medical Sciences’ (AIIMS) Trauma Centre, where 11 such patients are currently admitted.delhi Updated: Mar 09, 2011 00:15 IST
The families of 10 out of 200 patients in a vegetative state with no hope of recovery, ask for active euthanasia, shows data from the All India Institute of Medical Sciences’ (AIIMS) Trauma Centre, where 11 such patients are currently admitted.
Almost one third — 200 of the 700 — families refuse to take patients back after they realise that they can never function normally again. Such patients are off ventilator support — can breathe on their own — and do not require clinical care, but need someone to feed, clean and help them move.
“Though they need no medicines except for vitamin supplementation, the constant dependency can sap the families’ resources and be a huge mental burden,” said Dr Deepak Aggarwal, assistant professor, department of neurosurgery, AIIMS Trauma Centre.
Even NGOs are not willing to take responsibility as such patients need life-long care and funds are an issue. “It’s sad letting go of someone you love, but many are not equipped to deal with the liability for life,” said an NGO worker, who is part of the Trauma Centre’s network of social work groups.
A majority of vegetative patients are between 17 to 40 years old, with 80% of them being men, who were often the earning members of their families.
Currently, five patients are admitted in wards and another six are in ICU. While those in the ICU need medical attention and may recover, the five in the ward are fit to be discharged. But the families are pleading the hospital to keep them.
“Where will I take him? He was our only source of income. Can they not keep him here forever,” said Gauri Shankar Kumar, 72, father of Ashok Kumar, 28. A construction worker who had migrated to Delhi from Gopalganj in Bihar, Ashok Kumar has been admitted for two months and, say doctors, should have been discharged long time ago.
Raheesana Begum, 58, whose 18-year-old son Naushad is lying unconscious in bed number 19 in the neurology ward, refuses to believe that her son will never be normal again.
“We try to explain to her that we can’t help him, he will never get better, but she is refusing to take him home,” said the duty doctor, who did not want to be named. “What will I do with him like this? Here at least he is taken care of, back home he will die,” said the distraught mother.
“It costs Rs 5,000 a day of the taxpayer’s money to treat each patient admitted in a ward. The government must understand we need to set up rehabilitation centres for people who cannot be cared for by their families,” said Dr Aggarwal.
The Trauma Centre is commissioning a study to track the current status of vegetative who were sent home.
“The data collection work will be assigned to three NGOs, who will visit each patient in their native places to find out how they are. They are from such poor families that most must have died. We want the government to know that and consider setting up a hospice for the others who need care, not treatment,” said Dr Aggarwal.