In Andhra Pradesh, palliative care, with a few pioneering exceptions, still depends on the support structure of the family.
The absence of hospices or such services leads terminally ill patients to be tended at home as they simply cannot afford hospital expenses.
“Thanks to them, I could get tremendous psychological boost. They are doing remarkable service,” remarks a retired septuagenarian, who is among the 100-odd terminally ill cancer patients receiving home-care support in Hyderabad, from Dr. Reddy ’s Foundation for Health Education.
Launched as a pilot project as part of Dr. Reddy ’s Corporate Social Responsibility, “Life at your door-step” aims to provide “holistic” support to such patients — both physical and emotional — during a very stressful and difficult period, says an official in the Foundation, who did not wish to be identified.
The innovative project provides palliative care through symptom and pain management and seeks to re-assure patients that life is not burdensome despite devouring illnesses. It is a kind of mobile hospice designed to provide relief to patients who are unable to travel to the hospital due to financial, social or medical reasons. Only a fortunate few receive palliative home care support in Hyderabad. However, the virtual absence of hospices or such services elsewhere in the State leads terminally ill patients, particularly from poor families, to be tended at home as they simply cannot afford hospital expenses.
Take for example the case of Subbulu, a casual labourer from Ongole town, whose 37-year-old son, a municipal councillor, is battling leukaemia at an advanced stage at the Indo-American Cancer Institute and Research Centre in Hyderabad. Thanks to a grant of Rs. 1.37 lakhs from the Chief Minister’s Relief Fund, the family was able to cope with the resultant expenditure. “We will keep him here if there is a cure or take him home”, he says dejectedly. Subbulu lamented that most hospitals in smaller towns turned away such terminally ill patients without “giving even a tablet to ease the pain”.
With practically no hospices, there is a crying need for setting up palliative care centres all over the country, says Dr. G. Durga Prasad, a specialist in cancer pain management and palliative care. Dr. Prasad, an Assistant Professor of Radiotherapy at the Government-run Mehdi Nawaz Jung Institute of Oncology & Regional Cancer Centre, said that a separate department for palliative care was started at the institute with the help of International Network on Cancer Treatment and Research, American Cancer Society and Pallium India.
Pointing out that palliative care starts right from the time the patient is diagnosed with cancer, he observes that, “Difficult as it indeed is, we try to give the bad news as comfortably as possible”. Initially, the focus is on curative treatment, but as the disease progresses, palliative care becomes very important and continues beyond the patient’s death. The members of the bereaved family are provided emotional and psychological support.
Dr. Prasad points out that the Kerala Government had made palliative care a part of its healthcare system and sought a similar policy to be implemented on a countrywide basis. The concept of hospices has not quite taken off in India, he feels, essentially because palliative care is more of an unknown territory in our healthcare system. Another reason for the absence of hospices is because of the fact that it is primarily a Western concept. In the West, the family system has broken down as a support structure. But, this is not true of India where the patient receives a lot of family support right from the moment the disease becomes known. In hospices, the patients feel lonely and homesick.
Dr. Prasad said that plans were afoot to develop community-driven palliative care centres in rural areas in Andhra Pradesh on the lines of Kerala.
Disagreeing with this line of argument, Dr. M. Subramanyam, an anaesthesiologist, says hospitals are not interested in establishing hospices not because the idea is Western in nature, but because “there is no money in it. Hospices are more like service centres. That’s why nobody is keen to start them.” Dr. Subramanyam, who runs Axon Anaesthesia Associates Private Ltd., says that his company was planning to set up a hospice in Hyderabad with the help of philanthropists. “Having a hospice will help people save money to a large extent. Typically, in end-stage cases, there is no point in keeping a patient in the hospital as it will be a drain on his resources,” he comments.
Describing palliative care as “adding life to months and not months to life,” Dr.Ch. Mohana Vamsy, Director, Indo-American Cancer Institute and Research Centre, says the first priority should be to take care of patients who are curable, particularly children. The next area of attention should be to create exclusive facilities for the terminally ill.
Dr. Durga Prasad says guidelines conforming to WHO norms would be framed in three months to help hospitals and other organisations establish palliative care centres.
6 months ago