Palliative Care and the fundamental right to die with dignity

 

12 December is commemorated as ‘Universal Health Coverage Day’. In light of this, Mr. Rishabh Shrivastava and Dr. Anant Bhan, share with us an article, emphasizing  the need for effective integration of palliative care within the country’s public health system. 

The Indian Constitution guarantees the right to life under Article 21. Over a period of time, the jurisprudence around Article 21 has undergone significant transformation. One of the crucial facets of the right to life is the right to die with dignity. Courts, through various decisions, have recognized the right to die with dignity as a fundamental right and an integral part of the right to life under Article 21.  During COVID-19, the need to highlight and ensure a right to die with dignity was further reinforced and courts were compelled to issue directions to states to ensure that citizens are not deprived of this basic right. Taking suo motu cognizance of dead body mismanagement in Delhi and other states, Supreme Court issued guidelines for proper treatment of dead bodies management, protecting the right to die with dignity. The National Human Rights Commission, in the light of rising COVID-19 deaths during the second wave, urged the Center and States to frame a special law upholding the dignity of dead.

The Right to die with dignity connects to the concept of palliative care.  It was in 2011 in the landmark case of Aruna Ramchandra Shanbaug vs Union of India & Ors. (March 7, 2011), that the apex court for the first time in the country formally provided a pathway for passive euthanasia. Further in the case of Common Cause v. Union of India in 2018, the court legalized the use of a living will (advance directives).

Despite these measures, the regulatory and governance framework linked to end-of-life decision-making remains weak and inefficient. The required procedures remain complex, leaving the directives of the SC impractical and unimplementable. This impacts the right to die with dignity.

As a country with a large and growing populace, the number of individuals requiring end of life care in India is high. A study has indicated that the number of people requiring palliative care in India is likely to be around 5.4 million a year. According to various estimates, only 1% of the population in the country has access to palliative care. India’s performance in the Death Quality Index also remains disappointing. The country was ranked 67^th out of 80 countries ranked in the index prepared by The Economist.

The COVID-19 pandemic has further exacerbated the problem. It has brutally exposed the limitations of our health systems. Resources remain scarce coupled with frail infrastructure. In several instances, courts have reiterated the need to duly implement the right to die with dignity. The pandemic also severely affected and reduced the availability of treatment for other chronic diseases like TB, Cancer, HIV adding to the misery of patients’ and their families.

Progress in the field of palliative care in India

Due to concerted efforts by a wide range of committed stakeholders, there has been some encouraging progress in the field of palliative care in India. This includes innovation such as the community based palliative care model in Kerala, creation of a National Program for Palliative Care, amendment to the Narcotic Drugs and Psychotropic Substances (NDPS) Act, launch of specialist medical training programs in palliative care, collectives set up to advocate for availability of end of life, palliative care etc. However, implementation of the policies, programs and legal measures remains a major gap.

The recent reforms with a focus on Comprehensive Primary Health Care under Ayushman Bharat, based on the roadmap under the National Health Policy 2017 involved setting up of Health and Wellness Centres (HWCs). The package of services to be made available at the HWCs includes palliative and rehabilitative care, and towards this, operational guidelines for palliative care at HWCs have been formulated. Envisaged under these guidelines is the involvement of frontline community health workers in identifying community members who will need palliative care, promoting home based palliative care services including availability of medication, and referral and support services. As HWCs are being rolled out, it would be crucial to ensure that the palliative care component of the services is also prioritized.

The Way Forward

The lessons from the pandemic should include the reinforcement of the need to have a robust palliative care model. The model bill on end-of-life decision-making can be the right way in this direction as it takes into account a right-based approach to the issue of palliative care. It also addresses the issue of patient autonomy and withdrawal of life support systems. However, all of this needs to be accompanied by a greater awareness of death and dying. The society needs to deconstruct the stigma around the issues of death and mainstream discussions on right to die with dignity. Judiciary, policymakers, political leaders, health practitioners need to come together to build relevant strategies promoting palliative care, and making it widely available. Also importantly, we need to ensure that the implementation gaps in progress policies, laws and initiatives are addressed.The pandemic is a reminder for the need to work on promoting palliative care in India, ensuring that the fundamental right to die with dignity is protected, and the options for a good death is available to those in need.