NEW DELHI: As many as 98 out of every 100 patients with stage-4 cancer are unable to get palliative care in India, said a study, noting that this is despite a national programme on palliative care, which was launched in 2012.
The findings of the study, published in the British Medical Journal, underscore the pressing need to address barriers to accessing palliative care services in India, particularly for those in advanced stages of cancer. It pointed out that the country’s National Program for Palliative Care needs to be more effectively implemented.
Currently, only Kerala has successfully implemented palliative care, which is designed to provide care from primary to tertiary health facilities.
“In our study, we found that in patients with stage-4 cancer, 98.3%, which translates to 98 out of every 100 patients with stage-4 cancer, did not receive palliative care. This is serious as this means that the patients experienced avoidable suffering,” said Dr Parth Sharma, the study’s co-author. Sharma is a researcher at Association for Socially Applicable Research, a think-tank that primarily aims to create and communicate evidence for informing policies as well as influencing meaningful public discourse.
“Palliative care is a branch of medicine that addresses suffering related to any disease. Specifically in patients with cancer, early initiation of palliative care has been shown to improve the disease outcome and quality of life,” Dr Sharma told this paper.
According to the World Health Organisation (WHO), palliative care is an approach that improves the quality of life of patients and their families, who are facing problems associated with the life-threatening illness. The WHO also said that unnecessarily restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate palliative care.
Highlighting that India’s national programme for palliative care is “poorly implemented,” Sharma said, “Besides Kerala, access to palliative care in other parts of the country is inferior. There is an urgent need to increase awareness on palliative care and improve access to palliative care services.”
He said the need for palliative care is urgent, considering the rise in the prevalence of cancers and other non-communicable diseases. “The need for palliative care will only rise in the coming years in India. The country’s public health system needs to equip itself to address the avoidable suffering of the people,” he said.
The study said that in 2022, India had an estimated 1.46 million cancer cases.
Less than 1% of Indians receive opioid-based pain relief, a component of palliative care that can significantly improve the quality of life of cancer patients.
For the study, the authors assessed each cancer site based on gender and cancer type using the National Cancer Registry Programme (NCRP) 2020 report, which compiles data from 58 hospital-based and 28 population-based cancer registries covering 10 cancer types in over 102.9 million individuals.
The study said India has an unmet need for palliative care at 98.39% and differs from one type of cancer to another and from men and women.
Unmet need for palliative care is defined as the percentage of individuals with metastatic cancer who did not receive palliative care – in line with the American Society of Clinical Oncology's (ASCO) recommendation that all patients with advanced cancer must receive dedicated palliative care in addition to treatment for cancer.
It found that the unmet need ranged from 96.31% for stomach cancer to 100% for cancers of the nasopharynx - cancer that occurs in the nasopharynx, which is located behind your nose and above the back of your throat - and hypopharynx - an abnormal growth of cancer cells in a region of the lower throat.
The unmet need was more significant for females (98.65%) than males (98.20%).
The difference in the unmet need between females and males also ranged from −2.71% points for larynx cancer to 0.92% points for tongue cancer.
In women, breast cancer had the most significant burden of unmet need (21,053 cases out of a total of 42,933 cases) in 2020, while in men, lung cancer had the most significant burden of unmet need (30,977) cases of a total of 44,019 cases.
"Our analysis revealed a high percentage of unmet need for palliative care for metastatic cancer in the country. Moreover, this unmet need is only expected to widen if services are not scaled up effectively, as the incidence of cancer is on the rise in India. It is important to understand the needs of these patients and facilitate the provision of palliative care," the study stressed.
"Resource constraints, including limited health financing in India, make universal palliative care delivery challenging, necessitating prioritisation of available resources," the study said.
Dr Sharma also said there is a need to train more people in palliative care. "Training on pain management and end-of-life care should be included and emphasised in MBBS training. Every doctor needs to be equipped with skills to manage suffering. At the same time, access to morphine needs to be improved in India to address suffering associated with end-stage diseases. Doctors need to be trained in morphine use, and all the fears and misconceptions related to its use need to be addressed.”
He said a peaceful, dignified life and death is everyone's right, and it's the government's responsibility to ensure that no one suffers at any point in their life, including death, which is an integral part of life.