Palliative care at Karunashraya

NGOS

Venu (36) raises his unaffected hand in a namasthe. An aggressive and inoperable brain tumour has left Murali paralysed on one side and incapable of speech. Venu underwent radiotherapy and won’t benefit from it any more. Having spent all his earnings on the disease and with a wife and three little children to take care of, Venu and his family were at their wits’ end when they were directed to Karunashraya. At Karunashraya, his need for constant medical and skilled nursing care is being met by the doctors and nurses and the social worker even helped his wife get a job. Volunteers visit and talk to him and the young man is smiling once again.

Karunashraya is a palliative care hospice taking care of patients in advanced stages of cancer. Spread over five acres of greenery and with a central water body that can be viewed from all wards, it provides a soothing atmosphere.

Bangalore Hospice Trust, which runs Karunashraya, is a non-profit charitable trust established in 1995 and to date has helped over 8,500 patients add life to their last days. Karunashraya is run entirely from donations, and patients from all sections of society can avail of its services free of cost. Kishore Rao and Dr Nagesh Simha are the chief architects of Karunashraya and have steered the hospice towards excellence.

Dr Sadanand Gopal, medical superintendent, says, “We want to make sure that our patients get relief from pain and related symptoms and also that they and their families receive emotional support. This is a 50-bed hospice with a team of doctors, nurses, hospital attendants and volunteers who together meet the many needs of patients and families. We also conduct palliative care training programmes.”

There is also an outpatient service of the hospice where patients come and seek advice and a home care facility where skilled nurses and hospital attendants provide the required care at the patient’s home. Taking care of a terminally-ill patient can be draining. The home care staff not only trains the family to prevent bed sores etc but also gives it psychological support.

Confronting fears

“We help patients and families confront their fears. Sometimes, there are unresolved conflicts and post-intensive counselling, when issues are sorted out, people pass on peacefully. We try to ensure dignity in living and dying. We have a prayer room and meeting areas. With activities like painting and games, patients are distracted from their illness,” says Nagarathna, the social worker, even as she waves a friendly hand at Sabeeha (10), whose cancer was detected so late that chances of cure were nil.

For those without cancer

While Karunashraya takes care of the needs of advanced stage cancer patients, it has to be emphasised that palliative care is needed by others without cancer also and many of them may have a long life ahead. Palliative care alleviates pain and improves the quality of life of patients and families who are facing problems associated with advanced, progressive and life threatening illnesses. These patients would include those with HIV/AIDS, paraplegia, chronic heart/liver/kidney illnesses etc. Over 5.4 million people in the country are estimated to be in need of palliative care services.

Dr Nandini of Karunashraya is a qualified palliative care specialist. She is on the executive board of the Indian Association of Palliative Care (IAPC) and a member of the national faculty.

“Palliative care is not just holding someone’s hand and it is not just for the dying. There has to be competence along with compassion. At different stages of a long term illness, we need to provide different types of medical and other interventions. Palliative care requires special training both for the doctors and nurses. Nurses play a huge role in service delivery.”

(Names of patients have been changed.)