When Dr Sarika Aggarwal, a Doctor at UMass Memorial was conducting a survey along with Dr Sowmya Viswanathan on ‘Death and Dying practices’ among Indian families in Boston, she found the documentation woefully inadequate. But the answers she received from parents residing here surprised her. As part of a presentation for Asian –Pacific Heritage month, the survey revealed that the idea of pain management among parents of first generation families was undergoing a change. Her father, Mr. Mittal who was one of the participants said “Of course if I had a choice I would rather not have any suffering and pain in my last days of my life”. Dr Sowmya Viswanathan who along with Dr Aggarwal researched into the subject acquiesced “It was definitely a change. Such issues have been taboo in India for so long. Indians always feel it is our Karma to suffer”. The two doctors felt compelled to investigate and find out more on this topic. So in the month of May 2006 as part of “The Asian Pacific Heritage month, Dr.Sowmya Viswanathan and Dr. Sarika Aggarwal from UMass Memorial Hospital presented at the Asian-Pacific coalition meeting in May on the topic “Death and Dying practices in Asian Communities”. Strongly represented by members of the South Asian Coalition and Worcester Society of Asian origin, the presentation drew an enormous gathering and discussions were vibrant.

The survey they conducted included questions such as end of-life-care issues like IV Fluids, Tube Feeds, IV antibiotics, medications etc for suffering patients. Personal questions such as making end-of-life decisions or wanting the family / sons to make decisions or preferences to be in the hospital/ come home in case of terminally ill patients  was also asked. Opinions were sought about CPR (Cardiopulmonary resuscitation), Comfort Care measures (DNR/DNI), Respirators/ Ventilators and Discontinuation of life support. Questions also ranged about hospice care, Nursing Home placement for long term care and Autopsy and Organ Donation.

The second half of the discussion was about the actual dying practices in India. As a secular country, where people from so many different religions lived together with some cultural and socially different attitudes, they talked about the various aspects of “ Death, Dying and Funeral Practices” of all of them including Hindus, Muslims, Christians, Jains, Buddhists, Sikhs etc….
They have now been elected as the “Directors of the Asian Community Outreach Organization” that was formed to bring social awareness of the various practices of Asian Cultures and be a resource center to assist people of Asian origin. The focus of this organization is primarily the student population at this point with hope for expanding as a full-fledged Outreach forum for everyone. They have three Panel Discussions on various topics coming up in the next year with a Movie Production in the making – by Allen Chang.

The idea of Hospice Care in India is a totally unknown phenomenon. Dr. Nidhi Chojar, a doctor in the same hospital experienced this first-hand when her father was dying from cancer in India. He had metastasis to the bones and basically was sent home without any kind of pain medications. As a doctor she made arrangements to take medications from Boston to Mumbai, so she could keep his pain at ease. Says Dr Chojar. “I took all the equipment, medications, comfort packs given to me by hospice nurses to India. I wanted to walk my family through it not with the fear of dying but the comfort and support. I promised my father that cure is not always an option but comfort is ALWAYS an option. Just knowing that he will not suffer in his final days put my father at ease and my whole family was able to walk in peace with my father in his final journey". On the need for Hospice care she says, " Hospice in India is in its infancy. Even doctors there are just starting to hear about it and minimal resources are available to provide dying patients and their families with much support. Once a person is diagnosed with a terminal condition very little is available to keep them comfortable and the families are left with practically no support. The need for programs like Hospice is huge in India and I wish everyone in India can die without suffering and with lots of support. Social structure in India offers so much for families in crisis and I feel a hospice will fill the large gap that is left because lack of know how and resources”

So what exactly is Hospice care? As Dr Aggarwal puts it “Hospice care recognizes death as the final stage of life and seeks to enable patients to continue a pain-free life  to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is provided when life expectancy is, at most, no longer than 6 months.

As Physicians at UMass over the past 8-10 years, they felt the need to bring some awareness and sensitivity to the cultural aspects of the “Dying patient” in a hospital/ home setting. This led these two smart and ambitious women on a new venture – a soaring hope to start a “Hospice Care Program” in India.  The idea was strengthened after preliminary discussions with some doctors in Mumbai. Says Dr Viswanathan, "We discovered that there is no “Hospice Care Program” in India at present. When the elderly are ill and brought home by their children, there is no VNA service that goes to their homes to help out. There are no nurses who go to houses giving IV injections to help ease the pain of the ailing. The support system rests entirely on the children/ next of kin. Primarily, while in the hospital, the anesthesiologist takes over pain management to a certain limit, but once you are home, you are on your own".

Chief of Hospice Care at UMass Memorial Hospital - Mary Valiere M.D., is enthusiastic and supportive of their intention .Meanwhile the only issue and most probably the most important one is that of. “Funding”. “We are hoping that an investor who believes in it as we do will come forward and make this desire for Hospice care come true." Till then the two continue in their efforts of dissemination and information on this vital health issue.

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