Renu Sud Sinha
GHar le jao aur seva karo — is the last refrain by doctors when all treatment options stop working. “But they don’t tell you how to do that,” says Dr Firuza Patel, founder, Chandigarh Hospice. “That is also the stage when specialised care is needed the maximum because the pain is unbearable,” says the radiation oncologist, who was driven to start this palliative care project on seeing the suffering of cancer patients at PGI, Chandigarh.
The Indian Association of Palliative Care (IAPC) defines palliative care (PC) as the active total care applicable from the time of diagnosis, aimed at improving the quality of life of patients facing serious life-limiting illness and their families, through the prevention and relief from pain and other physical symptoms as well as psychological, social and spiritual distress through socially acceptable and affordable interventions.
“Palliative care is applicable in almost all critical illnesses but its progress has only been in cancer care,” says Dr Patel, who started the hospice in 2000 in collaboration with UT Red Cross. That’s perhaps because 70-75 per cent cancer patients consult doctors only at an advanced stage, says Dr Nagesh Simha, palliative care specialist and medical director, Karunashraya, a Bengaluru-based hospice.
“Cancer can’t be treated without PC and that starts from day one when the patient and his/her family are informed,” says Dr Ravinder Mohan, director (training and research), CanSupport, one of the largest and oldest Delhi-based NGOs providing free-of-cost PC services at home to cancer patients and families across North India.
PC used to be misunderstood as end-of-life care even by oncologists. But it is much more than that because if PC is integrated early in cancer treatment, various symptoms and pain management are under control, giving a better quality of life to a patient, says Dr Sushma Bhatnagar, head of palliative medicine, AIIMS, New Delhi.
Many studies say this may even lead to better survival rates because more than the disease, the patients are fearful of the associated pain. Besides, PC can free up active ICU beds, adds Dr Bhatnagar.
These pioneers, especially Dr Patel, Dr Simha and Dr Bhatnagar, who have been associated with PC management for over 25 years now, rue the limited awareness not only among people but even many doctors.
“Despite a huge cancer burden, less than 5 per cent of the patients receive PC,” says Dr Bhatnagar. That’s because doctors have only been trained to fight disease till the end and give treatment (cure), and not just provide (palliative) care, says Dr Simha. A change in mindsets, more advocacy and awareness campaigns are needed to overcome other challenges such as the lack of trained professionals. Only eight medical colleges across India, including AIIMS-Delhi and Tata Memorial Hospital in Mumbai, offer post-graduation in PC, while eight more institutions offer a diploma. The IAPC also offers short courses for professionals. It has trained over 7,000 doctors and 5,000 nurses till now.
There is limited use of oral medical morphine for pain control as many doctors are either not aware or hesitate to prescribe. “Also, the procurement of medical morphine is quite difficult in many states, including Punjab, Haryana, UP and Bihar,” says Dr Mohan.
Though the Centre has realised the need and directed all states to integrate PC in the public health system, a huge push is needed. Experts suggest making palliative care mandatory for doctors and nurses, including it in the under-graduate curriculum, more funds’ allocation, more decentralisation, and providing training to doctors and other staff at the primary healthcare level so as to make it accessible in villages, where it’s most needed.
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