Power, Suffering, and the Struggle for Dignity. Alicia Ely Yamin
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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 if they cannot provide pain medication to everyone immediately, palliative pain relief should be part of that strategy and plan of action. And fourth, states are obligated to train their health personnel in pain management, which is part of making the medications accessible in practice. If these steps were instituted across the world, millions of people would be saved immeasurable suffering.
Torture and Suffering in the Private Sphere
One way to expand the domain of rights is to reinterpret both what it means to act and how we understand causal responsibility. Inaction by the state should be seen as action when, as in Dolores’s case, the effects of such inaction are entirely predictable and preventable and we can identify reasonable measures for the state and other duty-bearers to take. Another way to expand rights and the responsibility of the state is to expand our consideration of assaults on dignity experienced in the so-called private sphere.
As I mentioned, in a narrowly circumscribed liberal paradigm of rights, freedom is seemingly exercised in a vacuum. Individuals in the liberal state are assumed to be “free” so long as the state does not force them to do something against their will. This is how we have traditionally thought about the right to be free from torture—as a shield from police (as in the Quijano case), as well as other state agents, including those in the health sector. Rights are conceived, in Roberto Unger’s words, as “a loaded gun that the right holder may shoot at will in his corner of town.” This view of rights in terms of isolated autonomy largely construes society and community as artificial constructs—rather than as processes through which our full identities emerge as individual human beings, as I suggested earlier.61
The idea implicit in such a view, that “every man’s home is his castle”—that rights only protect from infringements in the rigidly defined “public sphere”—is particularly inapposite for women and children who suffer the most direct violations of their rights within the “private sphere” of the home. For decades, feminists have pointed out that it is impossible to establish a true democracy in a society if each home is a dictatorship within which women have no rights. The “personal is political”—the “private sphere” is porous, and abuses of power exercised in the private sphere do not allow certain people to be genuinely free in any sphere of their lives. The same is true for how we raise children. The realization of children’s rights requires many public and societal changes. But it also fundamentally requires changing relationships within families so that decisions taken in children’s names or on their behalf are justified to them, and justifiable in terms of their “best interests.”62
Taking seriously the suffering of women, children, sexual minorities, and others requires a shift in the conception of rights and ensuing state obligations from the way in which they were set out in theories of the traditional liberal state. For example, both women and children are far more likely to face cruel, inhuman, and degrading treatment from domestic abuse than from police officers. In Tanzania, for example, three-quarters of children are subjected to physical or emotional abuse by the age of eighteen.63 Nearly a third of girls are subjected to sexual abuse,64 and not just in resource-poor settings, or the “developing world.” In the United States, in 2014, when it came to light that pro-football star Adrian Peterson had inflicted a “good old-fashioned whoopin’” on his four-year-old son, many rose to his defense as merely standing up for traditional authority, despite the sequelae of that punishment resulting in the child’s treatment in the emergency room.65 This kind of torture is often every bit as brutal as that suffered at the hands of state agents and, more often than not, children are witnesses to the violent abuse of their mothers or siblings—just as in the Quijano case, as Héctor’s mother and sister were forced to be. But in “private” settings—schools, homes, churches—the victims are often forced to see or even to live with the perpetrators, day in and day out.
International law, as well as domestic law in many countries, has evolved to address the obligations of states to protect people from abuses within the private sphere. For example, the UN Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), promulgated in 1979, and the Convention on the Rights of the Child, which was promulgated a decade later and as of 2014 has been ratified by every country except for the United States, South Sudan, and Somalia, transcend this rather artificial public-private divide and call for states to take responsibility for changing social practices that affect women and children, respectively.66 Subsequent normative