The manner of provision of health care, as well the failure to provide health care, can result in practices that rise to the level of torture, or cruel, inhuman, and degrading treatment, as they are defined in international law. In the context of health care, steep asymmetries of power are inherent—consequently, massive suffering and dehumanization are all too easily accepted and even normalized. For example, labor-and-delivery wards across the world have distinctly veterinary qualities to the care women are being provided, where basic issues of privacy, respect, and common consideration for human dignity are too often lacking.
Also in the reproductive health care context, forced sterilization has been found to constitute torture.51 The UN Committee on the Elimination of Discrimination Against Women (CEDAW Committee), for example, has noted that decisions about one’s body and reproductive capacity are essential to being able to live the life one chooses, and depriving a woman of these capacities strips her of essential dignity.52 And again, it is no coincidence that discriminated against populations, such as the Roma in Slovakia and the indigenous women in Peru, who are already treated by society as less than fully human, can end up being targeted for sterilization by the health system.
Denial of access to treatment can also deny women of fundamental choices over their lives and has been found to constitute torture when such denial produces severe pain and suffering. For example, in the case of KL v. Peru, a young Peruvian girl was forced to carry an anencephalic fetus to term because of the interpretation of restrictive abortion laws.53 After giving birth to a baby that had no brain, KL was forced to breastfeed the baby during the four days it lived. KL was later diagnosed with severe depression that required psychiatric treatment.54 The UN Human Rights Committee found that Peru had subjected KL to “cruel and inhuman treatment” and reasoned that in preventing KL from having a therapeutic abortion, KL’s severe suffering was entirely foreseeable.55
Denial of care can be direct, as in the case of KL, where it emerged as an open conflict between her petition and the decision of the hospital. But denial of care that rises to the level of “inhuman and degrading treatment” can also be achieved through laws, policies, and regulations in which there may be no open conflict between the patient and facility. For example, the denial of access to pain relief, if it causes severe pain and suffering, can be considered “cruel, inhuman or degrading treatment” under international law.56 But there is a gap between international norms and national regulations, as well as between public and political attitudes. That millions of people around the world continue to die of cancer and HIV/AIDS and other conditions, in excruciating pain every year, is related to how we understand the cause of that suffering and the state’s responsibility for taking measures to redress it.
Let me give an example of what the denial of pain medication means to an individual person. When I was living in Peru I got to know Dolores, a young woman who lived in the Cono Norte section of Lima. Before any gentrification began, the Cono Norte was a large slum area far removed from the picturesque poverty that tourists like to snap photos of in rural villages. The area Dolores lived in was filled with bleak cement structures, half constructed and chaotically set out on unnamed, unpaved streets, made more gray by the perpetual foggy mist, or garrua,57 that blankets Lima. It was a long time after she got sick before we knew Dolores had cancer. She coughed, her throat hurt, her glands were swollen. She saw doctor after doctor but was unable to get an accurate diagnosis—the doctors took her money and prescribed ineffectual cough syrups and antibiotics, and when these failed to work they told her it was a manifestation of psychological repression. She was told she would be cured if she could only learn to voice her anger. It got worse, she lost her voice, and it hurt so much to swallow that she stopped eating solids. Finally, she was diagnosed with esophageal cancer. By this time, it had metastasized; chemotherapy was ineffective. But even when she knew that she was dying, the health system still failed to provide her with the pain medication that might have allowed her to die with some dignity.
Dolores died in agonizing pain; having lost her voice, her face, disfigured by the agony, wore the perpetual expression she felt, frozen for weeks in a “howl” and reminiscent of the Norwegian artist’s famous painting.58 Her parents had set up a bed for her in the room next to the living room. Although she had previously taken care of everyone else in the family, family members now took turns feeding Dolores through a tube, cleaning her bedpan, and washing her body so that it would not get sores. Dolores spent her last months unable to sleep and wracked by anxiety and depression, as well as physical pain. I visited Dolores multiple times as she deteriorated and witnessed the center of this family’s home become transformed into a site of grief and anguish. It was unbearable for me, let alone her parents and the rest of her family, to see her suffer so much—and to be completely impotent to alleviate any of her misery.
The intensity of Dolores’s pain, and that of many terminally ill patients like her, is as world-destroying as that inflicted in some forms of torture. Yet it need not be this way. Most of this book, like most of my work, is concerned with the conditions under which people are born and live, but dignity has everything to do with how people end their personal narratives as well. Palliative care is part of allowing people to die with dignity, as is the choice of euthanasia under some circumstances.
Even from a purely utilitarian perspective, dying in unbearable pain should not happen to anyone in the twenty-first century. Morphine is an inexpensive drug and although palliative care would not be prioritized by conventional cost-effectiveness measures, as the dying do not recover, health economists are beginning to rethink those metrics in relation to pain relief.
But some might argue that the state is not responsible for Dolores’s suffering in the same way that a state agent is when torturing, as in the Quijano case, because the source of the pain is internal to the person and not caused by the health care system. Yet it was completely foreseeable that Dolores would end up in such pain, and morphine is an economical medication that easily could have been administered to allow Dolores to die with dignity and with little or no pain. We expect the state to undertake a wide array of actions to prevent what are the predictable consequences of not providing pain medication. Consider, for example, that we call for our governments to provide traffic signals because the resulting motor-vehicle accidents and injuries in the case of not doing so are entirely foreseeable. Similarly, the omission of providing pain medication can be considered an affirmative act, an act for which the state should be accountable through administrative and legal mechanisms. Dying patients do not get access to pain medication because health care workers are not trained in pain management or because regulations on controlled substances prevent their prescription and accessibility in the health system.
How we understand the reason for people’s suffering is crucial to enabling us to apply transformative human rights frameworks to health. If morphine and other pain medications are cheap and effective and if the failure to make those medications available and accessible results in the suffering of millions of terminally ill and other patients every year, we need not accept that suffering as “natural” or inevitable. Once we see how this inhuman treatment is caused by human decisions it follows that the laws, policies, and regulations that fail to take account of the claims to dignity that people in immense pain are forced to endure must be changed as a matter of justice, not just compassion.59 Under international human rights law, states have the obligation to prevent as well as punish and redress torture and cruel, inhuman, and degrading treatment.
Human rights groups have campaigned successfully to change laws and regulations regarding access to palliative care across multiple countries.60 When Human Rights Watch and other organizations have done so, they have argued that first, it is reasonable to expect that a state will not interfere with the delivery of palliative care to a patient; that is, they will not create undue barriers, through regulations or otherwise, to access. Second, the state has an obligation to ensure the availability of essential medicines, of which morphine is one recognized by the World Health Organization. Third, all states should implement a national public health strategy and plan of action; even
