Context: A new set of operational guidelines of NP-NCD, issued by the government, limit the focus of palliative care in India to people with cancer.
About Palliative care
- It is the branch of medicine focusing on improving the quality of life and preventing suffering among those with life-limiting illnesses like heart failure, kidney failure, certain neurological diseases, cancer, etc.
- It aims to identify patients at risk of over-medicalisation at the expense of quality of life and financial burden on the family.
- It also aims to improve the quality of life by addressing the physical, psychological, spiritual, and social domains of the health of people suffering from life-limiting diseases
- It is often misinterpreted as end-of-life care.
- Beneficiaries are terminal cases of Cancer, AIDS etc.
- The goal is the availability and accessibility of rational, quality pain relief and palliative care to the needy, as an integral part of Health Care at all levels, in alignment with the community requirements.
Need for palliative care
- Palliative care in India has largely been available at tertiary healthcare facilities in urban areas. Due to this skewed availability of services, it is accessible to only 1-2% of the estimated 7-10 million people who require it in the country.
- India has experienced a steep rise in the burden of lifestyle-related non-communicable diseases. Nearly 1.4 million people are diagnosed with cancer in India every year while diabetes, hypertension, and respiratory diseases are also on the rise. All these diseases need palliative care sooner or later in the disease trajectory.
- Post-independence India has made considerable efforts to improve the health of its people like the introduction of the three-tier health system, multiple national health programmes and schemes, and the Ayushman Bharat Health Insurance Scheme. But despite these efforts, 55 million people in India are pushed below the poverty line every year due to health-related expenditures. Over-medicalisation plays a significant role in this financial burden.
Steps taken by the government:
- The National Programme for Prevention & Control of Non-Communicable Diseases (NP-NCD): In order to prevent and control major NCDs, it was launched in 2010 with a focus on strengthening infrastructure, human resource development, health promotion, early diagnosis, management and referral.
- The programme envisaged the provision of promotive, preventive, and curative care from the primary to tertiary institutes, thus providing health services delivery across the continuum of care.
- National Programme for Palliative Care (NPPC): It was launched in 2012, NCD Cells are being established at National, State and District levels for programme management, and NCD Clinics are being set up at District and CHC levels, to provide services for early diagnosis, treatment and follow-up for common NCDs. Provision has been made under the programme to provide free diagnostic facilities and drugs for patients attending the NCD clinics.
- National Programme for Health Care for the Elderly: To provide accessible, affordable, and high-quality long-term, comprehensive and dedicated care services to an Ageing population.
- NGOs like Pallium India, Karunashraya, and CanSupport are trying to fill the gap in palliative care in India.
Gaps in the guidelines
- Per the Global Atlas of Palliative Care, in 2020, the need for palliative care was higher for non-cancer illnesses. However, the revised NP-NCD operational guidelines, mention palliative care in synonymy with cancer only. Cancer is just one of 20 common health conditions that require palliative care.
- Since most patients who need palliative care are suffering from debilitating diseases, home-based care forms the ideal mode of healthcare delivery. Previously, the programme guidelines mentioned providing support for home-based palliative care services. However, palliative care service delivery starts only from the district hospital in the revised guidelines, with no mention of home-based care.
- No mention of home-based palliative care services: Since most patients who need palliative care are suffering from debilitating diseases, home-based care forms the ideal mode of healthcare delivery.
- However, palliative care service delivery starts only from the district hospital in the revised guidelines.
- No mention of paediatric palliative care: An estimated 98% of children facing moderate to severe suffering during their end of life reside in lower and middle-income countries like India.
- Linking of 11 programmes (including NPPC) to promote convergence: The mechanisms of the linkage with a programme (NPPC) that has not yet been fully implemented are unclear.
- Access to palliative care will be assessed by estimating morphine-equivalent consumption of strong opioid analgesics (excluding methadone) per death from cancer. Including an indicator to assess morphine access is a welcome move, but an indicator focusing only on patients with cancer might lead to an inaccurate assessment of coverage of services.
- The recommendations of the World Health Assembly in 2014:
- Palliative care to be integrated into health systems at all levels.
- Including palliative care along with curative treatment
It is high time for India to realise the ongoing pandemic of non-communicable diseases and strengthen its palliative care services.