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Palliative Care- Providing Relief and Dignity to the Dying Prionka Ray Prionka Ray teaches 'Speech & Edudrama' and is a freelance writer. She says, "The fact is that I enjoy doing both too much, to call it 'just work'." Prionka is interested in music, dance, books, poetry and intricacies of human emotions. She lives in Singapore with her husband and two daughters.

Women of Sankalp

Savita was taking care of her cancer stricken mother for months. Sometimes it seemed so futile to try so hard yet see her mother’s condition worsening everyday. She was tired of weeping, of cleaning her mother’s bedsores, and of taking care of her own family as well. She knew that she could not do this too long. She needed some help emotionally, physically and financially to help her mother die peacefully. Luckily, their local doctor introduced her to Palliative care link clinics. The focus of these clinics was to control pain and symptoms as quickly as possible. Savita’s mother got free consultations although she had to pay for the medications.

The World Health Organization (WHO) defines palliative care as “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families”.

Care of the dying has been a constant feature of normal human society throughout history. Emperor Asoka (A.D. 238) established a refuge in Varanasi near the sacred Ganges River. Wanderers would come there to die, knowing that their ashes would be thrown into the sacred river to help their souls reach moksha, or liberation from the eternal cycle of death, rebirth, and reincarnation. In India today there are muktibhavans. Those who have stopped eating and drinking are brought here. Priests attend not to medical, but only to spiritual needs. Small portions of tulsi, a sacred plant, are prepared and offered to the dying along with the water of the Ganges. Death comes in a natural, predictable, and respectful fashion, without losses through the natural orifices, and with detachment, dignity, and little pain or suffering.

Strangely, the advancement of medicine, advanced by antibiotic therapy had brought Palliative care from the norm medical practise to a marginalized field in the past century. Those who could not be cured were often made to feel less welcome and less deserving of highly educated medical input. In the 1960s Dame Cicely Saunders renewed the earlier concepts and in 1967 established St. Christopher’s Hospice in London.

Sankalp Pallative Care Camp

Palliative Care in India is in a relatively early stage of development. It has been estimated that only less than 3% of patients with advanced cancer and around 1% of patients with all incurable diseases have access to any palliative care service. There are a total of less than 130 units in the whole country. They include hospices, hospital based units, out patient clinics, and home care programs and community based programs. Many inexpensive drugs are not readily available and enormous psychological needs can get neglected in busy clinics. The small south Indian state of Kerala stands different from the other regions in India. According to Dr Suresh Kumar, more than 50% of all palliative care units in India are concentrated in this region. All except a few of these units in Kerala are part of a network called Neighbourhood Network in Palliative Care characterized by massive community participation.

There have been other units that are coming up through out the country now as more medical practitioners are realizing the need of a palliative care unit. With increasing understanding of the importance of hospice, hospitals are dedicating units for it. The Rajiv Gandhi Cancer Institute and Research Centre (RGCIRC), New Delhi and AIMS, Kochi have successfully set up their hospices. Even Command Hospital, Pune is building a 100-bed hospice attached to it. Apart from the big units, small voluntary non profit organizations are also coming up with the focus on palliative care, like the Delhi based Cansupport

Making use of India’s extended family structure is one way to assist family members to deliver care to patients. “ Getting the family members to use our traditional home remedies can go a long way to reduce the cost of palliative care in rural India,” says Dr Tamer of Sankalp. Sankalp was started as a charitable organization in Chattisgarh (with its base in Bhilai), by Dr U. Tamer and Mrs Kanika Jain a few years ago. The team comprising mainly of the women in the area, helped in spreading cancer awareness and also started adopting many of the cancer patients who could not fund themselves.

The next logical step for the organisation seemed to be Palliative Care. They plan to have a home for the terminally ill patients who will get to spend their last days in peace under medical supervision. The Sankalp doctors practising palliative care recommend cheap and easily accessible remedies to the caregivers of the patients. These can be as simple as the advice of using neem leaves, rose petals and incense stick wrappers as room fresheners or bath fresheners for the patients. They believe that there are many cheap and effective remedies found in Chattisgarh area that would be beneficial to lessen the cost of palliative care.

Poverty, illiteracy, lack of awareness and long distances that must be travelled by the palliative care givers will remain as a challenge in India. “ We hope that all the organisations doing similar work can pool in their experience, to work towards common goal,” say Dr Tamer and Mrs. Jain.

For people like Savita, these units provide a much needed relief, emotional support and help. For her mother, it provides dignity in her dying days. There is still a long way to go. Nothing would have more immediate effect on the quality of life and relief from suffering, not only for the cancer patients but also for their families, than implementing the knowledge accumulated in the field of palliative care.

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