By Jayita Ekta July 2004 Rites of passage have lost their sanctity in modern times by becoming hospital and medication-driven events. By focussing on end-of-life care, we can ensure a dignified passage for the dying by making available unconditional love and support How does one deal with a situation where we know that the person we love dearly is going to die soon? Or, when they are no longer with us, how do we cope with our grief at their loss? How do those who know they are nearing their end feel? The importance of asking these questions and the necessity of finding an answer to them has prompted a study of death and the dying process in recent years. It is known as ‘thanatology’, derived from the Greek word thanos, which means death. While thanatology has evolved into a wide field involving the study of various phenomena related to death, including suicide, aging, terminal illness, AIDS and medical ethics, its most significant contribution has been to try and provide the dying with dignity and comfort in their final moments. Rites of passage have lost their sanctity in modern times, and have become mechanical, hospital and medication driven events. Thanatologists are seeking to provide a dignified passage to the dying, at times by using music, shamanic rites, prayer, and by making available love and support. This approach has been adopted in several hospices and care centres for the terminally ill around the world. In India, the concept of care homes and hospices for the terminally ill is gaining popularity. The Shanti Avedna Ashram in one such example. Founded by Dr Jose Luis de Souza 15 years ago, today the Ashram has centres in Mumbai, Goa and Delhi. Sister Alexia, administrator of Shanti Avedna Ashram, New Delhi, says: “We cannot extend their lives, but we can inspire them to live well for as long as they are alive.” This is the motto that caregivers at the Shanti Avedna Ashram live by. The Ashram, along with medical attention, provides counselling to inmates and their family members. Most people admitted here suffer from anxiety brought on by the knowledge of their imminent death. People with HIV also have to bear the burden of the resentment and scorn of other people. When they arrive at the Ashram, the inmates are at their lowest in terms of self-esteem and dignity. They have to be pulled out from that psychological well, nurtured to a state of mental and emotional well being, and inspired to accept death with equanimity. The Naz Foundation (India) Trust has established a care home for people living with HIVAIDS in Delhi, which also serves as a shelter home for HIV-positive orphaned children and abandoned women. The children are provided medicinal interventions, education and the chance for overall development in a loving environment. Ajay (name changed), who lives in the Naz Foundation care home in New Delhi, says that he was ousted from his community in Uttar Pradesh when it became known that he was HIV-positive. At Naz Foundation, he was received with dignity and grace. That was a turning point for him. Now, he believes he is no less than anyone and whenever he feels well enough, he helps in the daily chores of the care home. Malini, another HIV-positive person at Naz, was earlier confined to her house because of her fear that people would ostracise her. She was admitted at Naz and after much attention, she regained her health. She ignited in herself the spark to live happily and focussed on her health. She convinced her husband to undertake counselling and both lived happily with their daughter. She is no more now but she refused to let the knowledge of her impending death deter her from being happy. Workers at care homes lend their ears to the inmates who feel calmer once they have had the opportunity to speak with a sensitive listener. By talking about their feelings, they are able to know them better and eventually face them. Anything as simple as a friendly chat, regular visits or even praying together (as in Shanti Avedna Ashram where all people assemble in a prayer room to pray together) also gives immense pleasure and satisfaction to both patients and their caregivers. The love and support of family members and loved ones are of prime importance. But sometimes, family members are in a worse state than the person who is ill. They are then counselled at the care home and stress is laid upon their mental make-up, also preparing them for the inevitable in future. This gives them strength and they are able to cope better. They are also assisted, after the demise of their beloved, to move on with their lives. Hope is what keeps us going. In the words of the Dalai Lama: “Love and compassion are necessities, not luxuries. Without them humanity cannot survive.” Perhaps it is this that end-of-life care should focus the most on.
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