Cancer Support Group

Sunday, Apr 23rd

Last update:06:42:40 AM GMT

Shanti Avedana Sadan

(India’s First Hospice started on Nov 2, 1986)
Dr. L. J. Desouza, a cancer surgeon and our managing trustee is the one who started this hospice. Around 30 years ago he had to give a talk on Euthanasia. A week prior to this he was called to see a cancer patient living in a hutment. She was bedbound and had RVF and VVF with cancer of the cervix. Yet after doctor examined her she said – how long will it take for me to get well? Do your best, I want to be comfortable and active if possible, that was when Dr. Desouza realized that nobody wanted Euthanasia. They would be happy if they were symptom free and comfortable. That was when he decided to start India’s first hospice. We followed the rules and regulations of St. Christopher’s Hospice, London. Two of our nurses and myself were trained by Dame Cicely Saunders and Dr. Mary Baines. Our first hospice opened on 2nd Nov. 1986 at Bandra, Mumbai. The second was opened on 15th Nov. 1986 at Goa and the third was opened on 4th Nov. 1993 at Delhi. Shanti means peace. Avedna means no pain and Sadan means a house of rest. Our emblem is a strong hand holding a weak hand within the flame of love and under the roof of the hospice. We say where there is love there is no pain and if there is pain it is a pain that is loved. There are various types of pain – physical, social, financial, mental etc. We may not be able to solve all the pain especially family problems. Many patients have been dumped by the family who never even come to visit them. So we say, do not worry. We are there with you and will do the best we can.

The other day a colleague of mine said, Doctor you know something? The worst people are the self righteous ones. They always want to do good and insist on all others doing things their way. On reflection I thought this was very true. I am working with advanced cancer patients since the last 22 years. I have interacted with both patients and relatives over all these years and have found that the easiest to deal with are the patients themselves. After talking to them they accept that life will never be the same and yet they enjoy living one day at a time ie. if left to themselves.

Why do we need Hospice Care?
Despite the advances in medicine, we have a lot of unfortunate patients who have lost their battle with cancer, but still remain living human beings – broken in body, mind and soul. In a developing country, this agony is often accentuated by poverty and illiteracy. What then? Where do we send them to die? And should that final days be engulfed in misery? The answer is – there is a limit for cure but no limit for care. If one wishes, one can care for these individuals with devotion till the last moment, when they can die in comfort, without pain and with dignity.

What do we offer in hospice care?
Hospice care is a philosophy of caring. It is also called ‘Palliative Care’ or ‘Continuing Care’ to indicate that it follows the cessation of active treatment of the disease. Care must extend not only to a patient. But also to his/her family for both parties must be psychologically close to meet the end. It does not aim at prolonging life, for in the process it can only prolong their sufferings. It is instead a process of adding ‘life to days and not days to life’. It is a bridge to enable the patient to cross over with pain and suffering enabling patients to be at peace with themselves and with God.

When do we need to say ‘No’ to active treatment and ‘Yes’ to palliative care? Very often patients are offered palliative chemotherapy, palliative radiotherapy. They are not even aware of the meaning of palliative. They need to take huge loans to pay for the same. They end up with the disease progressing and the family left in a huge financial loss. Hence talking to the family at the right time to change to palliative care may look like a decision of ‘Defeat’ for the physician but in making it at the right time, he can convert his defeat into a ‘Triumph’ for the patient to end his life with dignity rather than in pain & suffering.

Where should a patient with advanced cancer spend his/her last days?
Every individual should be allowed to die in surroundings conducive to his comfort and happiness, so that one can die with dignity. For a terminally ill patient this could be home, in a hospital or in a hospice. The choice depends on the patient and the family & the socio economic conditions. If the patient can be looked after at home in proper manner and with the help of the trained team, there could be no better place for one’s last days. For this purpose home care has become an important aspect of palliative care. But what happens when there is no one to care for the patient or the family cannot cope, or no home care is available and most of all, if there is no place to call home? The general hospitals are crowded for active treatment patients and there is no possibility of blocking a bed for a patient with terminal cancer. The hospice is therefore the best alternative. It offers the love of a home and the specialised care of on institution. The greatest advantage is that is has trained team with the right philosophy and conducive surroundings to achieve the goals of palliative care. It is not however, a dustbin for dying individuals whom the community would rather forget, but rather it is a specialised intensive care unit, where each patient is special right till the end. Who exactly is needed for Hospice care? The hospice care team usually consists of doctors, nurses, volunteers, social workers, occupational therapists, physiotherapists & many others who may be needed to look after the multiple needs of a dying patient. Of this team it is difficult to identify which is the most important, all of them have their importance at different times, depending on the varying needs of the patient. They are therefore all equally important and must be trained to work together in a harmonious manner. This work is ideally done by a group of religious people who have a commitment to service without any anticipation of reward or fame. However this work can also be done by lay people, provided they have the same confirmed sentiments of service before self in a back ground of pure love, to help relieve some one's suffering and finally when the end comes and the mind and body have been equally attended to the soul also has to be prepared for inner peace. In suffering, pain and death there is no difference in religions. They all speak the same language and all have a Divine Master who alone can grant the dying patient the inner peace so very necessary for the end.

What for is hospice care needed?
Why do people work with dying patients?
Is an often asked question. Is it not better to spend this time with someone who is going to live? The answer is that these unfortunate cancer patients who have reached the end of the life are also living human beings for whatever time their flame of life is left to burn. There is no greater joy in life than that which comes from helping to relieve some one's pain and suffering, especially someone who cannot afford doing it for himself/herself. This joy cannot be expressed. It has to be experienced and what will be the rewards for these cares?

None of then is likely to get name or fame, money or even ‘Nobel prize’. In fact they will get much more when a dying patient whose suffering you have helped relieve and whose family you have brought together for the last moments, holds your hand looks into, your eyes and whispers ‘Thank–you’ you will have felt that you have received much more then you have given. The inner joy which comes as a reward for this work is much more then money can buy or name, fame and glory can achieve. And of course the master can never forget what you have done, for he has said in his own words – Whatsoever you have done to the least of my brethren you do it for me.

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