Beyond Cancer Treatment
L. J. de Souza
Despite all modern cancer treatments available, there comes a time when the oncologist must tell many of his patients that nothing more can be oﬀered for the treatment of his/her cancer. It is at this moment that he is left with a patient who has completely broken down in body, mind, and spirit and often even ﬁnancially. What does one do with such a patient?
My ﬁrst bitter lesson was during the very ﬁrst surgical posting after graduation at J.J. Hospital, Mumbai. There was a patient with very advanced cancer, who was unfortunately also a destitute. During medical rounds, I was informed by the registrar that this patient had to be discharged within a day, for dire need of hospital beds for other patients.
With no alternative in place, I was forced to arrange this patient’s discharge with the ward boy and instructed him that this bed must be vacated. The ward boy in turn, put the patient on a trolley and left him outside the hospital gate. The next morning, I was terribly pained to see this patient lingering outside the hospital gate in misery, only to die a painful and lonely death a few days later.
During my years at Tata Memorial Hospital as a young surgeon, there were many more patients for whom there was no further treatment. Their anguishing cries were “I have no other place to go, I stay in one room with six family members; I do not have adequate water and toilet facilities: who will do my fungating dressings; I am in severe pain; I do not have enough money for food; I cannot aﬀord to pay for my medication; please, please don’t send me home.” Back then, I had no alternative but to sadly send them home!
Much has progressed since then. Today, when it is time to tell my patients that nothing more can be done for the cancer, it is with deep satisfaction that I can tell them that there is still something more that can be done. Tears of despair change to those of joy and hope! They are oﬀered a place to go to where they can be relieved of their pain and suﬀering. It is here that palliative care is given with much love, and above all, at no cost to the patient. This is the Shanti Avedna Sadan.
Shanti which means “peace,” Avedna which means “without pain” and Sadan which means “home.” Shanti Avedna Sadan stands for “a home for peace in the absence of pain.” It is the very ﬁrst hospice in India for advanced and terminal cancer patients. It opened its doors in November 1986 and has now completed thirty-one years of service to over thirty thousand inpatients, irrespective of community, caste, and creed and has been totally free of cost to them. There are a hundred beds in the location in Mumbai, forty beds in Delhi and thirty beds in Goa. Shanti Avedna Sadan, as an outreach in hospice care is possibly one of the largest in the world!
Often, patients have returned home after admission at Shanti Avedna, and have felt so well after receiving palliative care that they felt almost cured, which of course was far from the reality. It is quite erroneous to say that Shanti Avedna and other hospices are places “just to die.” In fact, a hospice is a place “to live before one dies,” simply because its mission and purpose is to “add life to the days that are remaining and not just to add days to life.”
It is therefore of paramount importance, that patients are informed about the concept of hospice care and their long-term plan should involve the possibility of moving to a hospice earlier than later, so that they are relieved of their pain and suﬀering in a timely way, and have an opportunity to attain some peace in their suﬀering.
Palliative care has come a long way in India since initiated by Shanti Avedna, just as if by lighting a small candle in the darkness of pain and suﬀering. When Shanti Avedna ﬁrst started, oral morphine was not easily available for the relief of pain. It had to either be imported from abroad at a cost or have it donated to us. Today that has changed. Morphine is now available in all major hospitals and in certain pharmacies where patients can buy it with a registered practitioner’s prescription. It is manufactured by several pharmaceutical companies in India and no longer needs to be imported. Further, the number of hospices and palliative care centers in India has increased by leaps and bounds. There are more than 12 hospices in India now and they are ever increasing. There are also over a hundred palliative care centers all over India and especially in south India. Another advancement is in the ﬁeld of medical education; where prior there was no emphasis in the medical curriculum on palliative care, there now exist diploma and degree courses in palliative care. The Indian Association of Palliative Care has also been established as an organisation which brings together all those specialties which contribute towards palliative care, to discuss and bring about progress on a common platform. Above all, the government of India has recognized the urgent need of palliative care in the country and is propagating and supporting it in many possible ways.
It was our late president Dr. A.P.J. Abdul Kalam who wrote in one of his books, “Don’t pretend to be candle: Be a moth! Know the power hidden in service.”
There certainly is something more beyond just the treatment of cancer, simply because “there is a limit for cure, but there is no limit for care!”