Resting place

Final refuge of the terminally ill, Shanti Avedna Sadan in Bandra, Mumbai, offers its residents a pain-free stay and a chance at a peaceful end.

At Shanti Avedna Sadan (SAS), the patients tilt their heads sideways and give a warm smile upon meeting you. It is impossible to reciprocate without choking up, no matter how hard you try. For this hospice, the oldest of its kind in India, is home to people terminally ill with cancer or AIDS.

SAS is located right opposite the famous shrine of Mount Mary in Bandra. To the visitor, the patients, too, offer the opportunity of a brush with sainthood. After living for a long time in denial of the life-limiting capacity of their disease, these human beings come to terms with impending death and learn to make peace with themselves, their family and their God. Such deeds can be considered saintly.

 

At SAS, any patient who has advanced cancer or AIDS is entitled to palliative care, free of cost. However, it is important for SAS to know that the patient has exhausted all possible treatments before admission. Therefore, it asks that a form is filled in by the referring doctor or hospital.

Patients are relieved of pain through opiates like morphine given orally every four hours. That’s not the only analgesic on offer: psychologists and spiritual counsellors are also summoned. Once the cumulative effect of the painkillers takes hold, there is an unmistakably celestial glow on the face of the patient.

A decade and a half ago, I watched as my grandfather, Ardhendu Shekhar Ganguly, lying on an SAS bed, got back his smile after weeks of howling and soul-sapping pain. It was a smile he was famous for in his Kolkata para. The renewed twinkle in his eye and prolonged periods of laughter — which were not a result of the opiates — fooled me into thinking that somehow, miraculously, he might be on the road to recovery.

Now, speaking to the experts, it turns out that I wasn’t alone in such hopes. Most relatives — young, middle-aged or elderly — of patients at SAS experience the same emotion. Once their ailing loved one is admitted here they feel a flicker of hope, even thought the hospice says that it adds “life to days, and not days to life”. The smile on patients’ faces is a way of saying goodbye.

“The smile is an indication of their preparedness to go, leaving all attachments behind. Patients feel that they have fulfilled whatever they had to fulfill in their lives. It is their I-know-I-have-to-go-now smile. It also comes when they are giving up the spirit,” says Aquila Chittatil, hospice administrator.

Sister Aquila takes me on a round of the hospice, and introduces me to a couple of patients on condition that I “won’t ask them anything that makes them feel guilty about their disease”. I give her my word. Even so, patient Anand Jaiswal, who is afflicted with head and neck cancer, keeps the topic of his disease and its effects constantly in the foreground of our conversation.

“I had a stationery business near the Thane station,” he says, “but since I’ve got sick I’ve not been able to do anything. My wife does a bit of stitching and the house runs on that. I fall sick at home so I stay here. With timely medicines that are given here it becomes difficult to go and stay with my daughter and wife, even if I long to.” Jaiswal speaks with the aid of a tracheostomy tube. When he wants to speak he has to press into the tube with his left index finger.

The average stay of a patient in the hospice, which is now in its 25th year, is no longer than two or three weeks. Very few survive longer than that, although there are patients who have survived for four or even eight years, with their condition neither deteriorating nor improving.

Since patients become pain-free, and are aware that their time is limited, SAS becomes a place for some to set right the wrongs of the past, such as estrangement from relatives or friends, or to advance momentous events — like marriage, in the case of patient Sumi Godse’s son.

With her left arm flailing wildly, Godse is trying to reason with a person over the phone: “But it’s been a month since you [started] dating him… But my son is uncomplicated and understanding… He’s goodlooking and he has no addiction... But…”

The young woman on the line can’t explain why she is uncertain, but says she needs time to decide. Godse hangs up looking dejected and looks up at her son who is sitting by her bedside. “That’s why I had asked you to allow me to tell her about your condition,” complains the son to his mother. “She would’ve agreed to this proposal right now if she knew you don’t have much time.” Godse tells her son to use his charm, rather than sentimentality, to win over the woman in question.

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“The hospice is not only a place for relief of suffering, it’s also a place to finish unfinished business,” says L J de Souza, the surgeon and oncologist who founded SAS in 1986. “It’s where [patients] make their peace with people they’re upset with. There are many patients who didn’t want to see their wives and families. They’ve all come together in SAS. One striking case was of a blind boy in his 20s. He had a huge neuroma tumour. He used to recognise me by my voice. He didn’t want to see his mother because she had deserted him when he was young. We brought his mother but he refused to see her. This estrangement causes a spiritual pain that accentuates the pain of cancer. Therefore, we counselled him and he did finally agree to meet her a couple of days before he passed away.”

The doctor recounts another case, of Asha, a war widow with advanced cervical cancer. One day, during her stay at the hospice, Asha said that she felt extremely sad. She was dying, she was bleeding away, but that was not the cause of her sadness. The reasons, she explained, were that she had bought a sewing machine for which she had not yet paid the whole amount, and that her two children would have no one to turn to after she died. The hospice paid the rest of the money Asha owed on the sewing machine, and after her death helped to get her two children adopted. Asha left behind an embroidered handkerchief with her name stitched on it, made on the same sewing machine, as a parting gift to de Souza.

The doctor says he decided to build this end-of-life care centre after hearing cry after plaintive cry of “Doctor, please do not send me home!” at the Tata Memorial Cancer Hospital in Mumbai where he worked. There comes a stage, he says, when every cancer specialist reaches a dead end and can offer no more by way of active treatment. That is when palliative treatment, he realised, can be given instead of sending patients home to die in misery and discomfort.

It is not an easy decision for a doctor to make. For a doctor to throw his or her hands up and say “Sorry, I can do no more” appears to clash with the Hippocratic oath that all doctors swear. “There is a clash between [the] ethics [of our profession] and respect towards the patient,” says Jayaprakash Hebbar, a physician who has been sending patients to the hospice for over a decade. “I respect my terminally ill patients and I don’t like to see them suffering. It gives me more peace when I recommend them to the hospice, rather than stick to my oath of never giving up till their last breath.”

SAS has two more branches, in Goa and Delhi, apart from the one in Mumbai. All branches run solely on voluntary donations from individuals and organisations. The hospice in Mumbai can accommodate up to 100 patients, the one in Delhi 40, and Goa 20. Following the example of SAS, 12 full-fledged hospices and more than 100 palliative care centres have been established in different states of India.

The hospice, says de Souza, is an alternative to euthanasia. “Mother Teresa used to say: ‘Don’t abort the child, give it to me, I will adopt the child.’ The same way I say don’t kill them. Give them to us. We will give them a peaceful end.” Euthanasia, in Greek, means “good death”, and that is what this hospice offers.