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9 Articles in Volume 6, Issue #2
Assessment and Treatment of Chronic Pain
Clinical Drug Testing for Pain Medicine
Epidural Indomethacin Alternative in Adult Onset Diabetics
Focus on Urine Drug Monitoring
Office-based Treatment of Opioid Physical Dependence
Oxycodone to Morphine Rotation
Pain Care at the End of Life
Tennant Blood Study, A Summary Report
The Psychiatric Model of Treating Chronic Pain

Pain Care at the End of Life

Preserving Dignity

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

Regarding pain simply as a symptom may restrict interpretation, particularly when a direct correlation to an evident organic disorder is lacking.18 If that pathologic process is inherent to peripheral and/or central neural substrates, then those symptoms are the disease of neuropathic pain. However, neuropathic pain can involve brain centers of higher-order processing to evoke cognitive and emotional dimensions that construct the subjective sense of self and its relation to the world. Thus, pain becomes illness, and may be refractory to a disease-based, curative approach.19 This latter realm of pain obviously affects conscious processing and the experiential life of the person. Thus, its expression is a vital sign, in both the literal and connotative sense. But while vital signs are objectively assessable, pain can only be subjectively experienced.20 The clinician must therefore rely upon the narrative, or at very least some semiotic gestures of the patient, to apprehend the nature and extent of pain.21 This clearly represents a reversal of the expert knowledge model of medicine. In sum, the limitations of these conceptualizations: 1) may underlie the continued under-treatment of pain;22 2) illustrate that the essential question of what is pain is bound to an understanding of its subjective effects; and therefore 3) illustrate the need for an enhanced epistemology of pain that encompasses both its neural basis and its phenomenal impact on the life world of the patient.

The Impact of Pain

“In pain…we find...the tragedy of solitude.”23

Regardless of its temporal pattern, pain usurps mentation. Acutely, pain evokes cognitions and behaviors that focus upon avoidance or relief. Persistently, it becomes woven into the fabric of life as incapacity and suffering.24,25 In both cases, the experience of, and personal reaction to pain is conjoined to its effect(s) and meaning(s). Pain diverts the experience of other sensations, perceptions and emotions. In this way, it constricts consciousness to itself.26 Scarry states that pain de-constructs life;27 I agree, and add that the experience of pain re-constructs a life world laden with sensory, cognitive and emotional impositions. The person in pain becomes inwardly absorbed with a dis-attunement to their lived body, increasingly unable to engage the physical or cognitive domains of meaningful activities and interactions with others.28 Time is similarly devalued: the present is consumed by pain and the future laden with either apprehension or hope for relief.

“Pain care at the end of life is the embodiment of the pain physician’s act of profession. Simply, it is a promise and obligation to provide the right care, for the right reason(s), at the right time, and that is sensitive to the needs incurred by how much time remains.”

The impact of pain creates distinctly different needs in specific patients at various points in the lifespan. Reiteratively, the end of life is characterized by loss. Such loss is frequently multi-dimensional, involving diminution of physical, cognitive and social capabilities. It is also characterized by a sense of finitude, and the need to subjectively reflect upon the relatedness of the life lived, and to maximize the experiential intimacies of meaningful familial and social contact. Clearly, this is not the time for the person to be even more isolated and restricted by the solitude of pain. I posit that it is these needs which establish the undeniable clinical and moral obligation to effectively treat and manage pain at the end of life. I base this upon three premises. First, is that pain medicine is dedicated to ends (i.e., its telos) of effective treatment of pain; thus the pain physician is obligated to recognize pain as both disease and/or illness, and bear the responsibilities of curing or caring, respectively.29 Second, at the end of life, cure is impossible, therefore care is essential; and third, by its nature, such care is grounded upon beneficence,30 and as such must be sensitive to, and seek to render medical intervention that fulfills 1) the biomedical good; 2) what is good for the choices of the patient; 3) a humanitarian good that meets the needs of the patient as a person, and 4) an existential and spiritual good.31,32

Pain Care at the End of Life

The grounding obligation of medicine, in general, and pain medicine, by extension, is to the intrinsic dignity of the individual.33 It is the basis for establishing medicine as a curative, healing and caring profession with an objective moral responsibility to respect the sanctity of life and vulnerability imparted by disease, illness, and suffering. These vulnerabilities occur in unique, individual persons and are manifested through decrement in physical, psychological and social integrity, and a demise of personal station. The treatment of particular diseases, illnesses, and suffering so to preserve or restore personal dignity is the temporal obligation of the practice of medicine.34

For the pain physician, the focus of this practice is the right and good care of the person in pain. The needs of the pain patient dictate the type, nature and extent of pain care required. Further, since medical, legal and ethical issues differ as the end of life becomes more proximate, the pain physician must utilize multiple, distinct domains of knowledge to both understand these needs and issues, and use this information to prudently provide the best care possible for a particular person.35 Simple, “cookie-cutter” approaches to end of life pain care are inadequate and inappropriate36 and, given the extent of educational resources that are available, could be considered inept at best, and morally inexcusable, at worst.37 Effective pain management at any point in the lifespan requires the use of differing strategies and tactics, some fairly simple and straightforward, and others increasingly complicated and perhaps herculean.38

Knowing what should be done for a particular patient involves understanding of the plight incurred by their pain, and the urgency and contingencies of their needs. Doing what should be done may sometimes require fortitude, and always requires both the intellectual honesty and the professional self-effacement to recognize and admit professional limitations, and request the assistance of providers from other disciplines to best serve the needs of the patient.39,40,41 Pain care at the end of life is the embodiment of the pain physician’s act of profession. Simply, it is a promise and obligation to provide the right care, for the right reason(s), at the right time, and that is sensitive to the needs incurred by how much time remains.

Last updated on: December 20, 2011
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