In the searing short-story Kafan (Shroud), written in 1936, Munshi Premchand tells the tale of a lower-caste woman named Budhiya who dies writhing in the excruciating pains of childbirth while her father-in-law and husband attempt to arrange wood, fuel and a shroud for her funeral.
Bound by shackles of bondage, debt and hunger Budhiya’s corpse eventually receives no shroud laying bare the deeply fractured social system in which dignity in death for the most marginalized is altogether absent.
Nearly a century later as SARS-CoV-2 cannibalises India’s dead and living, a similar hollowness of mortal dignity is luridly visible. If dignity is central to the imagination and instantiation of justice, as philosopher Martha Nussbaum has argued, then the Indian state has failed its living and dead on all ethical and moral counts. In this light, the National Human Rights Commission’s recent recommendations to the Centre and states to enact a special law “upholding the dignity and protecting the rights of the dead” during Covid-19 boldly underlines the Indian state’s chronic failure to provide intersectional health justice for its subjects.
An ambiguous record
Undoubtedly the question of dignity in death is not and should not just be restricted to Covid-19. Upholding the dignity of the dead only in crises is as futile as pinning the blame for the lack of mortal dignity on the collapse of emergency-medicine when what is truly at stake is our underlying public health system fractured by decades of under-investment, social stratification and the absence of social solidarity required to sustain health and dignity across lines of caste, class, gender, religion and ethnicity.
Further, upholding the dignity of the dead in India requires a composite social, cultural, medical, political and legal transformation of attitudes towards the dead and dying. Though the National Human Rights Commission’s recommendations create a legal exigency, India’s deeper record of dealing with its dead, and those on the verge of dying, is fraught with failures and ambiguities.
Here is evidence in five perturbing signs.
First, India ranks at the bottom of the global Quality of Death index. A 2015 study conducted by the Economist Intelligence Unit found India to be among the worst countries to die in the world. Among 80 countries ranked on the basis of policies for end-of-life care, which included palliative and healthcare environment; human resources; affordability of care; quality of care; and community engagement, India ranked 67th overall.
India further ranked an abysmal 74th in the affordability of end-of-life care, below Bangladesh, Iraq, Ethiopia, China and Uganda. The study also revealed the disturbing fact that only 0.4% of India’s population has access to “palliative care”, which refers to medical treatments that improve the quality of life of patients facing life-threatening illnesses through pain-relief (and not cure).
Other factors like poverty, indebdtedness, and high disease burdens play a significant role too. In a recent editorial in the Journal of Palliative Care a group of eminent doctors part of India’s End-of-Life Care Taskforce (or ELICIT) have asserted this in no uncertain terms: “Indians seem to die very badly.”
Second, India lacks laws regarding “quality death” in end-of-life care. According to Navin Salins, a leading palliative care physician, India’s inability to provide a good and dignified death in emergencies is secondary to poor government-led strategy at the national level, shortage of palliative care specialists and providers, limitation of public funds, lack of availability of opioid analgesics and poor public awareness about the necessity of end-of-life care.
A recent report by the Vidhi Centre for Legal Policy in colaboration with end-of-life care clinicians corroborates, “the lack of legal certainty around end-of-life decision making has also proven to be a barrier in ensuring the quality of death”. Current guidelines laid down by the Supreme Court regarding withdrawal of care for terminally-ill patients involves a hierarchical three-tier structure of the hospital, District Collector and Judicial Magistrate alongside the patient’s next-of-kin, which are impractical and time consuming to implement in real-life emergency care settings.
The absence of legal consensus is exacerbated by a lack of social consensus around palliative care triage, which is seen as a form of abandonment rather than ensuring a pain-free death. Such legal lacunae deprivilege the medical profession as much as patients, and lead to unethical biomedical practices and distrust with direct consequences for quality of patient-death.
Third, concerns about dignity in death completely ignore how perniciously SARS-CoV-2 has blurred the lines between patients and caregivers. Alongside the dignity and rights of the dead, the dignity of living caregivers is equally at stake. The Indian state has failed to recognise Covid-19 as a “caregiver’s disease” (in line with global epidemics like Ebola, for example). Under political pressure from the mounting pandemic while the Indian state promulgated the Epidemic Diseases (Amendment) Ordinance, 2020, to include protections for healthcare personnel facing Covid-19, doctors have argued that an emergency legislation is far from enough to remove deep-rooted patient distrust and eliminate vulnerabilities, loss of dignity and psycho-somatic stresses for doctors caused due to India’s health systems.
A recent article in the Journal of Family Medicine and Primary Care notes that inspite of the ordinance, communication of the Act to state security and legal functionaries is extremely poor rendering it toothless. It also raises “serious doubts” about whether dignity and security for healthcare workers will continue to be maintained even after the pandemic comes to an end.
The Indian Medical Association recently said that of the 244 doctors who have so far died in the second wave of Covid-19, only 3% were fully vaccinated. What does this shocking statistic tell us about the state’s chasms of care against caregivers itself? In a series of trenchant letters recently published in the Postgraduate Medical Journal, clinicians from Delhi’s All India Institute for Medical of Medical Science and Safdarjung Hospital describe horrifying personal accounts of violence against doctors inspite of the ordinance.
They describe the loss of dignity for medical caregivers as “an emerging epidemic amidst [the] Covid-19 pandemic in India”, in which “Indian doctors are teetering on the brink of a major silent crisis”.
Fourth, the Indian state has outrightly ignored its legal responsibilities towards the dead even during the first-wave of Covid-19. An article published in the Special Issue (2020) of the Indian Law Institute – Law Review details how just one year ago, taking suo moto cognisance of media reports regarding the mishandling of Covid-19 patients and dead bodies, the Supreme Court of India on June 19, 2020, issued multiple directions to the Delhi state, Centre and Ministry of Health and Family Welfare to address the glaring human-rights lapses.
When the Union of India and various state authorities filed their affidavits in response, according to the article, “the Supreme Court…observed that the affidavits…appear to be general statements, and that they lack any mechanism for follow-up of the claims made”. The said “claims” included a one-time visit to all Delhi hospitals by “senior doctors” and guidelines to ensure proper treatment of Covid-19 patients and dead.
However, the health ministry’s “Covid-19 Guidelines on Dead Body Management”, based on epidemiological knowledge about Covid-19 in March 2020 is strangely “limited in scope to hospital deaths”. The government’s affidavits made no mention of other agenda-setting International Guidelines and Regulations such as those by the International Committee of Red Cross, World Health Organization and European Union, which are more recent, comprehensive and cover clinical and non-clinical settings, crematoriums, burial sites etc.
Further, between 2020 and 2021, the health ministry’s guidelines have not been updated despite a wealth of new epidemiological data about the impact of SARS-CoV-2 in India. Despite concrete legal discussions and supplementary guidelines issued by the SC exactly one year ago why does the Indian state still find itself unable to learn from past experience and ensure the rights of the dead?
Fifth, India has a particularly tramelled record of the social determinants of health, which make questions about dignity in death critically challenging for India’s most marginalised. This is true even in the pandemic, where care-providers most vulnerable due to their low caste, class and ethnic backgrounds, like mortuary workers, sanitation workers, sweepers, cremation ground workers, ASHA workers and last-mile caregivers remain ambiguously placed in the eyes of the state and the law.
Health ministry guidelines for treating the dead don’t explicitly mention these workers by individual occupation choosing instead to retain ambiguous labels like “health care workers/staff”, which obscure the social particularities of their medical labour and dismiss the specific toxicities and risks arising from such labour.
Not just in the health emergency of the pandemic, in a broader social context too the humiliations of lower-caste existence render Dalits as India’s living-dead. Academician Gopal Guru has written of Dalit bodies as “walking carrion” subjected to moral decomposition and physical and mental atrophy in life and death. That so many last-mile caregivers in India are Dalit is no coincidence. Will their demands for dignity, premised on years of underlying structural violence, caste-based debility, and living with excess injury and discrimination coincide with legal demands to ensure the dignity of India’s dead?
In conclusion, questions relating to dignity in death are pivotal for they enable an imagination of moral equality premised on humanity as a shared virtue. However, as the aforementioned points suggest, India’s granular socio-cultural record structurally challenges a universalist, positivist and ableist idea of dignity itself.
In his provocative book Humanity Without Dignity – Moral Equality, Respect and Human Rights, philosopher Andrea Sangiovanni rejects notions of dignity in so far as they pertain to or imagine a universal rights-bearing subject. Sangiovanni argues that moral equality rests most firmly on a direct rejection of inequality and inferiority rather than transcendent and indirect notions of dignity. The basis of respect for the person, Sangiovanni says, is better rooted in an understanding of what it means to treat someone as a moral unequal, and as inferior – and in interrogating why such cruelty is wrong.
Dignity, in such a framing imposes an ableist capacity to exercise rational choice and seeks to problematically create an equivalence between people with vastly different socio-economic, historical and political antecedents.
As I have tried to show, this plays out perniciously in India too. The debasing and degrading treatment of those in death today mirrors their undignified treatment in life itself. In this light, while the National Human Rights Commission’s demand for a law to protect the dignity of the dead is urgent, it is equally vital for the Indian state to substantively cultivate the virtue of humanity without using “dignity” as a fig-leaf to ignore deeper socio-cultural, legal and medical disparities, which are being exacerbated by Covid-19.
Nikhil Pandhi is a doctoral candidate in medical and cultural anthropology at Princeton University. A Rhodes Scholar, he ethnographically researches global health and the socio-cultural determinants of health in India.
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