Rights, Relief and the Road ahead
– Ms. Smriti Rana, Trivandrum
December 10th was celebrated as World Human Rights Day.
The word “celebrate” does not roll easily off the tongue, or on to this page. Celebration indicates happiness at achieving a goal, a milestone. Perhaps in the context of palliative care, it is better viewed as a reminder of how much more needs to be done.
Palliative care, which strives to relieve Serious Health-related Suffering (SHS), has historically been viewed as pain relief for terminally ill cancer patients. This is reductive, and a pervasive myth. SHS spans a vast spectrum of diseases, including but not limited to cancer. The suffering exceeds physical pain to include social, emotional, psychological and spiritual distress for the whole family. Each domain is intimately interlinked with individual and collective human rights.
The impact of illness is determined by the wider ecosystem within which people exist – the concentric spheres of community, state, nation and international consensus. Policies, legislations and practices that allow and enable rights that safeguard health, dignity and autonomy are important determinants.
The limitation, however, is that in many Low and Middle Income Countries rights, policies and legislations do not automatically translate into practice. For that to happen, stakeholders need to take cognisance of barriers, and implement effective pathways to enliven these rights.
Let’s consider pain. World over, approximately 8 million people die of cancer annually. 60-90% of people with advanced cancer suffer moderate to severe pain1. Cancer mortality in South Asia is 68.44%, significantly higher than the world average of 59.74%. An estimated 15 million people in South East Asia experience severe, persistent pain and suffering2.
In 2008, Human Rights Watch interviewed people experiencing moderate to severe pain in India. Their responses mapped closely to those of torture victims – all they wanted was the pain to stop. Many admitted to seriously considering suicide. Death seemed like the only answer.
Unrelenting physical distress, coupled with lack of agency in shared decision-making or access to clear information, pushes people to try every avenue of intervention – much of it futile in advanced stages of illness, and unspeakably expensive. Families spiral into multi-generational debt. Caregivers give up their jobs to stay home and look after the patient. Children are pulled out of school so resources can be reallocated to treatment. Catastrophic health expenditure pushes 55 million Indians below the poverty line annually3.
and have a cup of tea
The illness of one person destroys the future of many.
Article 21 of the Indian Constitution stands guard against threats to life and liberty. The scope of the Article has been expanded through various cases to argue that life does not merely mean “animal existence” or continued drudgery, but living with “human dignity”.
Poverty, loss of autonomy, livelihood and dignity as a result of disease, illness and unmitigated pain, violate these rights at a fundamental level.
The unfathomable tragedy is that much of this pain and suffering is completely unnecessary. The capacity and expertise to effectively halt this kind of assault on human dignity is within reach. That we do not reach for it is baffling and inexcusable.
Morphine and other low cost opioid analgesics are available, but not accessible to all. Palliative care remains a lonely outlier in most medical circles. Training in pain relief and palliative care is not prioritised.
The 2017 Lancet Commission on Palliative Care and Pain Relief Study Group called this out: “The fact that access to such an inexpensive, essential, and effective intervention is denied to most patients in low-income and middle-income countries (LMICs) and in particular to poor people—including many poor or otherwise vulnerable people in high-income countries—is a medical, public health, and moral failing and a travesty of justice.”4
The intersectionality of pain relief and palliative care with human rights is internationally recognised.
The UN Special Rapporteur on Health and Torture declared,“The failure to ensure access to controlled medications for pain and suffering threatens fundamental rights to health and to protection against cruel, inhuman and degrading treatment.”
The 1961 Single Convention clearly articulates a dual obligation “to prevent the non-medical use of controlled substances, and equally, to ensure adequate availability of controlled substances for medical and scientific purposes.5
The reality continues to be far from these aspirations.
Looking beyond pain, death is inevitable. Yet, dignity in death is a luxury only afforded to a few. The right to life with dignity cannot exist in a separate realm from dying.
Liberty, autonomy, fraternity and justice, the cornerstones of the Preamble to the Constitution of India, largely pertained to religious and political aspects. It was brought into the personal space in the period between 2017-2018 when the Supreme Court passed judgements on privacy and medical autonomy. The autonomy judgment of 2018 recognised the legitimacy of the Living Will, and through it, the constitutional validity of citizens to take control of their care at the end of life. But in laying down onerous procedures, the constitutional principle was diluted.
With advancements in medicine, the emphasis has exponentially shifted to diagnosis, treatment and cure. And a devastating medicalisation of death. A groundswell is building in Western countries towards ensuring dignity, and handing control back to citizens. But India remains a death-denying society. In turning away from the necessary conversations around it, we deprive people of the opportunity for shared decision-making in line with their values, preferences and rights. Only in facilitating conversation around serious illness, death and dying will we find the spaces where we are not “ground down between the immovable rock of natural biology and the irresistible force of medical technology”6.
Glimmers of hope continue to emerge. On October 7, 2021, the United Nations Human Rights Council (HRC) adopted Resolution 48/3 on “Human Rights of Older Persons.” Palliative care was referenced four times and the conclusion to the palliative care section observed: Existing international human rights norms as interpreted and applied by international human rights bodies have failed to deliver a clear guarantee of the right to palliative care that can be invoked in order to ensure that the right is enjoyed at the national level7.
For hope to translate into action, we require pragmatic implementation of the palliative care component of the National Health Policy by the Ministry of Health and the 2014 amendments to the Narcotic Drugs and Psychotropic Substances ACT. We also need compassionate legislations and policies for end of life care that are not akin to an obstacle race. Hospitals should adopt Standard Operating Procedures (SOPs) that bring together palliative care critical care, and other disciplines that would benefit from appropriate guidelines on managing end of life care. The narrative around palliative care must change through public advocacy – that it is a right and not charity for those whom medicine has no more to offer and harness its power to bring dignity, and agency to those made vulnerable by disease.
We have the means. The path has been charted. We must now move forward so we may have something to truly celebrate.
1Human Rights Watch, “Please, Do Not Make Us Suffer Any More…”: Access to pain treatment as a human right, March, 2009, http://www.hrw.org/en/reports/2009/03/02/please-do-not-make-us-suffer-any-more, p 5.
2Vallath N, Rajagopal M R, Perera S, Khan F, Paudel B D, Tisocki K. Access to pain relief and essential opioids in the WHO South-East Asia Region: challenges in implementing drug reforms. WHO South-East Asia J Public Health 2018;7:67-72
3Wagstaff A et al. Progress on Impoverishing health care expenditure in 122 countries. The Lancet 2018; 6:180-192.
4Knaul F M, Farmer P E, Krakauer EL, De Lima L, Bhadelia A, Jiang Kwete X et al; Lancet Commission on Palliative Care and Pain Relief Study Group. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. Lancet. 2017; 391(10128):1391–454. doi:10.1016/S0140-6736(17)32513-8.
5Preamble of the 1961 Single Convention on Narcotic Drugs, http://www.incb.org/incb/convention_1961.html (accessed January 15, 2009)
6Dr. Roop Gursahani, Consulting Neurologist Hinduja Hospital, Co-founder End of Life care in India Taskforce (ELICIT)
7Katherine Pettus, PhD Senior Advocacy Director IAHPC, https://palliativecarensw.org.au/human-rights-resolution-of-older-persons-includes-palliative-care/
About the Author: Ms. Smriti Rana heads the Policy, Strategic Partnerships and Community Engagement Divisions at Pallium India.
She leads programs which include central government engagement, international advocacy for safe access to essential opioids for pain relief, capacity bridging with social development and public health organizations, advocacy skill-building for people with lived experience and appropriate end of life care.