City desperately short of ‘terminal counsellors’

City hospitals, already overcrowded with terminally ill patients, pay very little attention to their emotionally fragile state -- a key function of a terminal counsellor. Hospitals and the NGOs haven’t been able to meet this shortfall of counsellors which should ideally be handled by the virtually non-existent palliative care units all over the city.
Sensing a poor response and ignorance of the minimal, existing facilities, even counsellors have chosen to practice elsewhere. “Mumbai has hardly any terminal counsellors. Patients and their families need this counselling to cope with the problem,� says Alka Kapadia, executive director, Cancer Patients Aid Association (CPAA). Terminal counsellors guide patients and their families through traumatic periods wherein they have to come to terms with the patient’s inevitable fate. “The main question that relatives of the dying patient pose to counsellors is whether to inform the patient about the status of his or her deteriorating health or not. Kapadia informs, “It all depends, it’s very relative. We study each case separately and gauge to make our own decisions. We don’t follow any standardised system. I know of only CPAA and the NGO, V Care, that have counsellors working in this area at Tata Memorial. At times, if the patients can’t commute because they are not keeping well, we visit their homes. We co-ordinate with medical professionals, social workers, and other outdoor patients.� The city has less than 20 terminal counsellors. Moreover, the public is not availing counselling services, in spite of the fact that it is free of charge.
According to counsellors, some patients want to address the subject of facing death, while others simply refuse to talk. Research suggests that doctors shy away from informing patients that they suffer from a terminal illness. “The truth is that doctors have too many patients to deal with. Hence it becomes difficult if not impossible to treat each case with the time and care that a counsellor could use,� informs another counsellor.
Minnie Kapoor, volunteer at V Care, says, “Terminal counsellors are needed to cope with the growing cancer patient population. People who come from villages don’t know where to go.� Research done abroad reveals that in most cases, patients cope better with the disease after being informed. Elaborating on the issue, Gitanjali Chatterjee, a terminal counsellor, states, “Terminal diseases like cancer give the patient time to take stock of his or her life. They can tie up all the loose ends. It’s important to bring the family together to explain the totality of the situation.� Kapadia adds, “It’s true that a majority of the patients are ignorant about the treatment. When a doctor says that nothing can be done to save a patient’s life, the family cannot come to terms with it and try stronger drugs which have severe side effects, which only cause more discomfort to the patient. Here, counselling plays a pivotal role.�
Chatterjee has been trying to form a network of counsellors who can work in this field and spread more awareness. Interested counsellors can contact her on on 6487097/9 between 8 pm and 10 pm, or on weekends.