Terminally ill people have the right to a life of dignity with access to medicines and care that help ease the pain which often accompanies diseases like cancer, say experts on the eve of World Hospice and Palliative Care Day .
Currently, only a few states like Kerala, Maharashtra, Karnataka and Orissa as well as the Delhi administration have provisions that allow care-giving organisations to administer strong pain killers that make life more bearable.
But the experts say all state government should frame laws that allow organisations to play a more dynamic role in easing the pain of the terminally ill.
Drawing attention to the needs of the terminally ill and also those who stand a better chance of cure if given treatment in time, Indian groups will join global bodies to mark Oct 8 as World Hospice and Palliative Care Day.
"State governments need to replace ancient rules that cause some impediments in providing terminally ill people with analgesics and opiates that can make life easier in the last stages," said Dinesh Goswami, secretary of the Indian Association of Palliative Care and of Guwahati Pain and Palliative Care Society.
"There is still not enough awareness among people and physicians about the need to make medicines available to help ease the pain which often makes life an agony not only for patients and caregivers," Goswami told IANS.
Kerala has a demonstration hospices centre attached to the Calicut Medical College that was set up by the World Health Organisation and is run by the local member of the Indian Association of Palliative Care. The facility not only provides training but is also a regional research and development centre.
People from neighbouring countries like Bangladesh and Sri Lanka come there for training.
Earlier this year, Delhi-based CanSupport, an NGO providing palliative care to people with advanced cancer, was given the morphine licence after five years of efforts.
"This is a valuable resource that will help us provide our patients the means to control their pain without depending on the goodwill of others," said Harmala Gupta, president and founder of CanSupport.
Among probably less than 100 groups including a dozen government-run institutions across the country providing shelter and palliative care, CanSupport was set up eight years ago by Gupta to spread awareness that most cases of cancer are treatable if detected in their early stages.
It also supports families in their struggle to cope with the pain of looking after terminally ill people.
"There is no legislative protection in India unlike in the West where there are safeguards for the rights of people with perceived disability," said Gupta, who faced discrimination 18 years back and failed to get a good job despite her qualifications when she was diagnosed with cancer.
"Even now people with cancer face discrimination and get no support from their place of work," said Gupta.
Apart from providing medical attention at home, groups like CanSupport lend a sympathetic ear to family members and caregivers looking after terminally ill patients. They also provide day care facilities and medicines and try to spread some cheer among patients and caregivers.
In many cases, they even help to fulfil the last wishes of a dying person. In the case of Gita, a poor woman with three children, CanSupport was able to convince her alcoholic husband to allow the children to be placed in an orphanage with good education facilities to ease her pain in the last days.
Twelve-year-old Vivek passed away happy after seeing his poor mother and siblings getting one meal everyday and his wish of giving them a tour of Delhi was fulfilled.
"There are no words of consolation that one can offer. Giving them dignity and relief from pain is the only thing one can do," said Gupta.
"In most cases families are doing what institutions should be doing. In India we are lucky to have supportive families but they too need our support."
At 7.30 p.m. local time, the associations from New Zealand to Hawaii will hold special events to raise a "voice for hospices". In a span of 24 hours, around 350 such events, including in Delhi, will be held to raise funds and awareness about how palliative care can transform lives.