Pain Care at the End of Life
The recent ruling in Oregon on physician compliance in assisted suicide has become the focus of considerable ethical controversy and debate. However, its emphasis upon notions of death and dignity also re-illuminates the role and responsibilities of pain medicine in end of life care. As Illich has noted, death is no longer the ‘nemesis’ of medicine, rather it is disease.1 The advances made by contemporary medicine have indeed enabled a more prolonged lifespan with progressive chronic pathologies. This has generated pragmatic and ethical issues arising from the physical, emotional, social and economic effects incurred by the incapacity of the curative model to effectively meet the medical needs of those with longitudinal disease and illness.2 Often, these become predominant, de-personalizing factors that influence domains of dignity at the end of life. Thus, I posit that we must frame Illich’s admonition against a medical Jehovah complex within those contexts in which the curative paradigm is not viable. This ultimately is embodied in the role(s) and responsibilities of medicine at the end of life and is served by the question of: how best to care for what cannot be cured?
In this commentary, I will briefly explain the notion of dignity, and argue that medicine is obligated to both the basic dignity of humanity, and to the evaluative, subjective dignity maintained by each individual person. The temporal parameters of the “end of life” are relative to particular disease processes and the capabilities of medical intervention(s), and frequently involve a progressive loss of the physical, cognitive, and emotional capabilities that are important to personal dignity. Pain, by its nature, exacerbates this loss. Thus, I argue that there is an ineradicable obligation for pain relief at the end of life that is upheld through the right and ethically sound practice of pain medicine that is dedicated to both respecting the intrinsic dignity of life, and to preserving personal dignity at its end.
On Death and Dignity
To paraphrase the philosopher Hans-Georg Gadamer, we the living have no choice but to accept the reality of death.3 Death can occur at any age and like disease, injury and illness, is neither predictable nor discretionary. Yet, for most, it remains a poorly envisioned, distal point in an indeterminately long future. Our attitudes toward death are shaped by culture, belief(s), and experience.4 Thus, attitudinal “valence” toward death is embodied by circumstance.5 The inherent ‘badness’ of death is centered upon that which is lost.6 This would certainly include the potential and desire for a longer, productive, fulfilled life and the goods achievable therein (both to self and to others), as well as the first-person ability to subjectively experience the good(s) that life has to offer.
Thus, while death itself negates the potentiality for further life experience,7 the process of dying determines the experiential impact of loss by affecting the conative and cognitive abilities that are fundamental to the phenomenal definition of each persons’ identity.8 It is in this light that people almost universally wish for a death that is without demise of their physical, cognitive and moral stature, in other words, a death that preserves the integrity of their life as a person.9 This integrity includes the organic unity of the lived body, as well as the capacities for, and subjective experiences of interpersonal relationships and “being in” the world. This evaluative identity is personal dignity.10
This is quite different from the notion of basic dignity that is grounded in persons’ irrefutable moral worth.11 Although a thorough discussion of dignity is beyond the scope of this writing, it is important to note that the Kantian equation of intrinsic dignity with moral autonomy has been somewhat de-contextualized in modern constructs of ethics.12 This has led to a misinterpretation of the concepts of intrinsic dignity and the capacity for autonomous will, and the subsequent confusion in the definition of dignity as being solely inherent upon the ability to make rational choices. In fact, this is not the case, and the historical evidence of disregard and subjugation of human moral character in many ways reflects the abstract nature of this concept. Personal dignity, however, is not abstract, and involves concrete actions beyond the mere capacity for choice. It involves capabilities and interpretations that manifest meaning and are directly related to, and dependent upon the life situation(s) of the individual.13 Such personal dignity is not immutable: it can be diminished, lost, preserved or reclaimed by both circumstance and acts of self and others. But these concepts are not mutually exclusive, and each may serve particular ethical claims in healthcare about the inviolability of life, and the importance of life quality in defining the existential experience of an individual.14
The Nature of Pain
“Every pain has distinct … signification, if we will but carefully search for it.”15
Just as a discussion of dignity must address objectively intrinsic—and subjectively evaluative dimensions—any meaningful definition of pain must include both its sensory and emotional domains. These reflect the differential activation of discrete areas of the peripheral and central neuraxis that function singularly, or as a coordinated network, to evoke the physical and cognitive experience of pain.16 In fact, for most, these experiences are subjectively inseparable. The objective neurological event of pain is the subjective experience of pain, and both the neurological bases and existential reality of pain are individually variable. In recent years, the medical community has regarded pain as a symptom, a disease and/or a “vital sign.” While each of these considerations is in some way valid, they are each also limited by the partiality of their scope. To be sure, pain can be a symptom of an underlying insult to neural or non-neural tissues caused by injury or disease. But symptoms are subjective, and are reflective of both a pathophysiological condition, and the meaning(s) that are associated with the symptoms themselves.17