Emerging Need to Address Palliative Care in India: Challenges and Opportunities
Varun Devraj, Princeton University
According to the World Health Organization (WHO), an estimated 40 million people around the globe are in need of palliative care, yet only 14% of them receive the adequate care they need. Additionally, out of these 40 million people, 78% of them are living in low- and middle-income countries. The WHO estimates that India alone has 6 million people who require palliative care services. Dr. M.R. Rajagopal, the founder of a palliative-care NGO based in the southern Indian state of Kerala, says that only 1-2% of patients in India who need palliative care actually receive it. Against the backdrop of the current COVID-19 pandemic, however, the specialty of palliative care is receiving more global attention, creating opportunities for the Indian medical profession to improve access to this care.
Palliative care, as defined by the World Health Organization, seeks to improve “the quality of life of patients and their families facing” “life-threatening illness,” through the “treatment of pain and other problems, physical, psychosocial and spiritual.” Caregiver involvement in this process ensures a holistic approach to the treatment of suffering. Several models for palliative care exist. The most well-known is hospice or “end-of-life” care, where special clinics provide around-the clock services to dying patients. The increasingly popular home-based care model emphasizes treatment directly into the homes of patients. This gives health providers the entire picture of a patient’s life and how illness impacts not only the physical body, but also the lives and livelihoods of family members.
A key component of palliative care is pain relief for patients, but India's stringent government regulations have prevented doctors from being able to prescribe these medications. Passed in 1985, the Narcotic Drugs and Psychotropic Substances Act (NDPS) implemented complex and often confusing guidelines for obtaining a supply of opioids. Even with amendments that relax these stringent rules in the past few years, many Indian healthcare professionals have not been trained in prescribing or even obtaining these medications, meaning that they will be less likely to supply patients with them when needed.
Unfortunately, Indian doctors and nurses have not been given adequate training or awareness about palliative care. The Medical Council of India only recognized palliative care as a specialty and gave the distinction of an M.D. in Palliative Care in 2012; as a result, a majority of Indian doctors wishing to further their education in palliative medicine actually have to travel abroad for fellowships. While this formal education is necessary to train healthcare professionals, palliative care will never be highly regarded in India unless the general population also has a greater awareness of its importance. And although recent years have seen the introduction of formal courses and information sessions that work towards educating people about palliative care in India, much more widespread education work is still needed.
Both preconceived notions of palliative care being tied to the end-of-life setting as well as local cultural stigmas also limit its use in India. Most people associate palliative care only with treatment received in hospice settings during the final stages of a terminal illness, not with pain relief in a more expanded context. Cultural considerations in India, such ayurvedic practices and beliefs around karma and suffering, play an additional role in stigmatizing palliative care services, leading many patients to refuse palliative care services that could relieve their pain. In fact, many Indian medical professionals even believe that palliative care is an admission of defeat in the face of their failure to cure patients.
Additionally, in a country where many cannot access even basic health care, the intrusive and expensive nature of hospice and hospital palliative care means palliative care is simply not an option for many less well-off patients, who cannot afford the high cost of treatment. While workers in various health fields have faced enormous difficulties due to the COVID-19 pandemic, palliative care changed radically in these past few months. A key component of palliative care is physical contact between care providers and patients; however, COVID-19 has made it difficult for providers to extend this essential and comforting physical presence. Additionally, hospitals and hospices are no longer safe for many terminally ill and immunocompromised patients, such as those with advanced cancer. This is one reason why home-based palliative care services are so beneficial, as patients do not have to leave the safety of their home. However, the COVID-19 lockdown restrictions also mean that home-care teams are carrying out more procedures inside patients’ homes. Unfortunately, access to medical equipment and supplies for these procedures is still at pre-pandemic levels and is increasingly being stretched thin.
The best way to improve access to palliative care is to educate more healthcare professionals about the benefits of palliative care, while also giving them the possibility to be trained in palliative care services. Unfortunately, the COVID-19 pandemic has upended existing palliative care training programs, stressing the need for virtual forms of palliative care education.
Another key step in expanding access to palliative care services is for the Indian federal government to make a more concerted effort to relax the confusing opioid regulations stipulated in the 1985 NDPS Act and ensure that Indian doctors are sufficiently trained to prescribe painkillers without overprescribing. The combination of opioid availability and better palliative medicine education will lay the groundwork for further efforts to expand palliative care services across India.
However, for palliative care to be widely accessible, organizations and hospitals require more funds to scale up services. With no national healthcare system and little private sector funding, the only long-term solution is for the government to take an active role in supporting palliative care. Whether this is done through expanding health insurance access or simply through direct financing for palliative care, the government, at both the state and federal levels must build a strong foundation for palliative care.
While home-care is ideal for most patients in India, providers must also adapt their approach in the face of the COVID-19 pandemic. Greater focus on tele-medicine services will expand access to treatment, while maintaining a high quality of care. Although virtual palliative care addresses the concerns of patients without increasing coronavirus-related risks to both patients and providers, the lack of contact and physical presence of doctors, nurses, and counselors makes it much more difficult to establish trust. Since this trust is an essential aspect of quality palliative care, it will be important to explore alternative models for developing close relationships between patients and palliative care teams in the future.
Ultimately, India presents an important study of the challenges and promises of palliative care in a modernizing, more virtual world. Despite its unique cultural context and the continued structural challenges to effective implementation of healthcare services such as palliative care, current developments in the field show promise for expanding access to these pain-relieving resources across the country. With a greater focus on funding and opioid availability as well as more widespread education efforts, the Indian government truly has the ability to become an innovator in palliative care on a global scale.
References
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