It’s 7.30am and Jeba Lideal is moving quickly to ward number two to replace her colleague who has just completed a night shift. She enters the doorway and cheerfully greets the first patient she sees, Nagaraj, a 32-year-old man suffering from oral cancer, admitted just two days ago.
Nagaraj (name changed) was cleaned and given a bath only an hour back, but due to the discharge from a wound on his cheek, which extends right up to his neck, his mouth needs to be cleansed again and followed by another dressing. While she checks his diaper and turns him on his side, Lideal wonders what Nagaraj’s life would have been before he was brought to Karunashraya, a hospice for end-of-life cancer patients in Bengaluru.
“On an average, we get 90 new admissions in a month,” says Nagesh Simha, a surgeon and palliative care physician who has been serving as the medical director of Karunashraya since it opened in 1995 as a home care centre. Few residents outlive a fortnight, many die in three or four days.
Bangalore Hospice Trust – Karunashraya is a joint project of the Indian Cancer Society (Karnataka Chapter) and the Rotary Club of Bangalore Indiranagar, to provide free professional palliative care for advanced stage cancer patients who are beyond cure.
Most patients reach Karunashraya only when they have passed the curative stage of cancer. About 75% of the patients who come here cannot afford further medicine and have no one to care for them. Patients from affluent families, when the families lose the ability to cope with the illness, also seek admission here.
Karunashraya is a stand-alone hospice in Bengaluru that provides a comprehensive set of services including in-hospice and home care.
The hospice was set up over 20 years ago with a small thought that became a big idea. Kishore Rao, chairman of the Indian Cancer Society, had noticed the helplessness of terminally ill cancer patients repatriated from Kidwai Memorial Institute of Oncology.
“After having a team of doctors and paramedics to look after them for months, they felt completely lost to be left on their own… and wait for death,” he said.
A majority of the patients were from rural areas with little knowledge and no money to carry on. “Hospitals did not make the effort to tell them what to do next and there was no other facility in the city to look after such patients back in the 1990s,” he said.
With help from the Holy Cross Sisters and independent funders, Karunashraya started home care services for advanced-stage cancer patients in 1995.
The people they visited were destitute, with no electricity, little food and water in their homes. On account of the unbearable pain, they remained unwashed and hungry and often alone. Karunshraya opened its doors for inpatients in 1999.
“Our aim is to provide peace and dignity in the life and death of such patients,” says Rao.
“Patients are in different stages of awareness when they arrive,” says Maria Sonia Louis, a counsellor, now also working as research assistant at Karunashraya. “We let them settle in for the first 1-2 days before initiating any conversations about their condition.”
“The first and most important step is to make the patients comfortable by mitigating their pain,” says Louis adding that when they arrive, some patients also need a good hygienic scrub and clean clothes.
Louis says some cry for two or three days, during which time the counsellors and staff members support them in every possible way without asking any questions. “Once they accept, we tell them about our willingness to help in every possible way. Some are just happy if we can keep their pain under control, others like to talk about their problems.”
While the elderly don’t find it as difficult to accept their condition, younger patients keep going back and forth between the “denial” and “why me?” phases.
Many patients only want to reconnect with their estranged family—relationships that keep troubling them until the end, as if they are looking for closure. Most patients will not move on if something troubles them. “The medicines may stop working, they might give up food and water, but they don’t let go of their last breath if they are waiting for someone or something.”
The team gets in touch with NGOs and foundations, which help in the rehabilitation of patients’ families after their death.
A lot of thought went behind designing the building, which is the winner of the JK Cements Architect Of The Year Award in 2000. Rao had seen India’s first hospice, Shanti Avedna Sadan in Mumbai, which overlooks the Arabian Sea, and was certain he wanted a water body within for its therapeutic effects. The wards were planned around a quiet pool for tranquility. They face eastwards to take in the rising sun.
Patients often spend their afternoons and evenings on the benches around the pool in the midst of the greenery. This is also where sometimes counsellors sit with them and make them mindful of their condition, which is arguably the most challenging task for a Karunashraya counsellor.
Wards have Dutch doors that also work as windows and reflect glimpses of water on the ceiling as the patients lie on their beds. While each ward has 12 patients, curtains can be drawn around each bed for privacy. In case of any death, the door behind each bed becomes the way out, barring visibility to other patients.
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