"Man by his very nature,'' wrote Cicely Saunders in 1962, "finds that he has to question the pain he endures and seek meaning in it.''82 For patients, the drive to find meaning in pain often takes the form of narrative - from extended personal stories to compressed beliefs. The belief that all pain and suffering is sent or sanctioned by God, for example, constitutes a compressed mininarrative that regularly occurs within larger accounts of divine providence throughout world religions. Although medicine officially distrusts narrative as mere anecdotal evidence far inferior to science or fact, medical education and practice are bursting with narrative, whether in formal case studies and patient histories or in casual tales swapped around the water cooler.83 In 1999, the British Medical Journal, defying the culturally coded devaluation of narrative as no more than entertainment, ran a five-part series entitled "narrative-based medicine.'' The title, evoking a deliberate contrast with "evidence-based medicine,'' expresses a conviction that narrative in medical contexts constitutes useful (if limited) evidence and a valuable (if selective) tool that might complement traditional biomedical practices. The British Medical Journal Press republished the articles along with additional contributions in a book-length study (Narrative-based medicine: dialogue and discourse in clinical practice) that includes an essay by Sir Richard Bayliss entitled "Pain narratives.''84
What are pain narratives and how might they help clinicians address urgent issues of bioethics? Pain, we might say, is the ancient antagonist of which the brain must perpetually make sense, and one way we make sense of pain is through narrative. Moreover, individual narratives are never wholly unique, but share basic features with other stories circulating inside a culture. We understand any text ultimately because we have learned the narrative conventions that govern it, from case studies to Star Wars. Furthermore, we inhabit cultures that surround us with prepackaged narratives. Country music specializes in miniature erotic narratives of pain and suffering, as do standard rock anthems such as John Mellancamp's Hurts So Good. (In edgier performance narratives, the American rock band Genitorturers draws spectators on stage at live concerts to have needles jammed into their groins.) Popular culture is awash with pain narratives. Televised talk-shows have added the newest variant with their tales of nonstop victimization. We all live out our lives, as philosopher Alasdair MacIntyre tells us, in terms of narrative.85 It is rash to believe that the pain narratives circulating within popular culture have no impact on how people live. The study of pain beliefs shows the damage that ensues when patients anxiously imagine catastrophic outcomes. The challenge is to study the harmful or helpful consequences of pain beliefs that are enfolded within more fully developed social and personal narratives. Such research holds implications not only for medical treatment, but also for medical ethics.
One helpful approach to narratives of pain and suffering comes from sociologist Arthur W Frank in The wounded storyteller: body, illness, and ethics.86 Frank offers a typology of four narrative structures that reappear when contemporary patients write about their illnesses. It would be useful for pain specialists to recognize instantly, almost as a diagnostic category, what Frank identifies as the recurrent type of "chaos'' narrative. It would also be useful to develop an extended typology of the narratives that patients bring to a pain center. We know that chronic pain often constitutes a threat to individual identity.87 If individual identity is inseparable from the tacit narratives of self-hood that we construct or accept, then the dilemmas of chronic pain and suffering include an inescapable narrative dimension. Frank argues that the self cannot be reconstructed in healing without the reconstruction of a new personal narrative. The Greek term ethos originally referred to a person's settled disposition or character, and the narrative reconstruction of a human life, in healing, is a profoundly ethical matter.
The skills developed through narrative are relevant enough to medical education to fit comfortably within the prevailing language of competencies.88 Some narrative competencies are especially relevant to pain, including the basic clinical act of listening. As a low-technology virtue that everyone praises but few take seriously, listening is a skill that needs to be relearned inside medical contexts for professional purposes, much as a competitive swimmer must relearn how to breathe. One famous study showed that doctors listened on average for just 18 seconds before interrupting patients in order to take control.89 Later studies indicate that the situation is not quite so onesided, but listening is a skill that, for various reasons, comes hard in medical settings.90 If a health maintenance organization (HMO) requires physicians to spend on average no more than seven minutes per patient, listening to pain narratives may seem an unaffordable luxury. A sounder approach, however, might regard skilled listening to patients as necessary for accurate medical understanding. Accurate medical understanding would thus require skills in listening. Failure to obtain skills necessary for medical practice is not merely unprofessional but unethical.
Skills in listening to patient narratives are sometimes crucial to pain medicine. For example, pain entails special problems for the elderly, who may suffer serious side effects from medications or hold erroneous pain beliefs that make any treatment less effective. The IASP study Pain in the elderly recommends exploring nondrug therapies.91 The practice of skilled listening to patient narratives, like the practice of writing in narrative form for patients, can have therapeutic value. Narrative can help pain specialists learn how to listen and what to listen for. Speech and story are never wholly transparent. As bioethicist Tod Chambers writes, "Every telling of a story - real or imagined - encompasses a series of choices about what will be revealed, what will be privileged, and what will be concealed: there are no artless narrations.''92 There is no need to pump up claims for skilled listening or for the uses of narrative. They are not the answer to pain. However, nothing else is either, including morphine. Skilled listening is one more useful tool in a multidisciplinary approach to the multiple dimensions of pain, and research with hospice patients has demonstrated, at least in selected circumstances, the value of narrative-based therapies such as structured life review.93
Narrative helps to illuminate the ethical issues always implicit in pain. The mere act of paying attention, so basic to the reception of narrative, is a moral as well as cognitive state: in turning a deaf ear, we demonstrate how little we value the speaker. Narrative also helps us to recognize and respond to the ethical significance of unnoticed, everyday acts, such as the pain treatment accorded to ethnic minorities. Moreover, because narrative is among the ancient and enduring forms of moral knowledge, from Aesop's Fables to Schindler's list, it provides a resource for exploring the ways in which pain and suffering make a claim on us as moral beings. A cry of pain places us always, implicitly, under an ethical obligation. Its inevitable subjectivity is not impenetrable, but belongs to social, interpersonal codes as instantly comprehensible as SOS. We may not be able personally to answer every SOS, but it is self-deception to pretend that we do not know what it means or what response it asks from us. Narrative is a resource for developing skills in the recognition and interpretation of ethical dilemmas intrinsic to pain. Even an unresolved dilemma, if we recognize it for what it is, at least invites future resolution. An unrecognized ethical dilemma in medical settings, especially a dilemma that centers on pain and suffering, is a potentially harmful form of ignorance.
The medical undertreatment of pain has been well documented for over 20 years.94 Its ethical implications, however, are not often recognized or addressed.95 One prominent study, for example, shows that 50 percent of hospitalized dying patients in the USA spent at least half their time (according to family members) in moderate to severe pain.96 The method that researchers employed to redress this undertreatment of pain in dying patients centered on staff education, not on ethics and certainly not on narrative, and it yielded no improvement. As an alternative method for recognizing and addressing the ethical implications of undertreatment for pain, narrative can hardly do worse. Consider the 1999 New York Times story about Mrs Ozzie Chavez.97 Mrs Chavez, a California Medicaid patient, was refused proper anesthesia in childbirth because she had not paid an additional (illegal) fee required by the anesthesiologist. "The anesthesiologist wouldn't even come into the room until she got her money,'' Mrs Chavez was reported saying. "I was lying there having contractions, and they wouldn't give me an epidural. I felt like an animal.''
Narrative will not get us to the bottom of the story -to expose the truth about what really happened in Mrs Chavez's room - but it helps us to unfold the ethical implications of the patient's experience. It illustrates too how the ethical implications of everyday acts often go unnoticed in our emphasis on megawatt, headline-grabbing, life-and-death bioethical issues.98 When this story ran in the newsletter of the American Society of Anesthesiologists, it evoked the following commentary from one doctor: "Poor people can't expect to drive a Rolls Royce, so why should they expect to receive the Cadillac of analgesics for free.'' As if to head off a looming public relations disaster, the president of the American Society of Anesthesiologists, John B Neeld Jr, vaulted directly to first principles. "It is unethical,'' he said, "to withhold services because of reimbursement.'' End of story?
A narrative on bioethics would not consider the story to have finished when one character, no matter how eminent, denounces the behavior of another character as unethical. Just as there are no artless narrations, narrative theory reminds us to consider what is unsaid or even unsayable. Neeld, for example, does not mention (is it unsayable?) that medical services are withheld every day in America because of inability to pay. Nor is the USA alone in withholding services. Furthermore, as in the dilemma of hospitalized dying patients, medical services for pain are routinely withheld for causes apparently unconnected with cost.27 These causes - reflected in what William Breitbart has called the "dramatically under-treated'' pain of AIDS patients74 - express bias, as well as economics. Sex and race, as one (disputed) study shows, affect a medical decision as seemingly neutral as recommendations for cardiac catheterization.99 Sickle cell pain, with its predominant impact on people of African heritage, is not untroubled by issues of race. Within this cultural mix, as it applies to Mrs Chavez, we must consider the substandard payment policies of certain government agencies. Finally, in a narrative analysis which assumes that language matters, we should note that Mrs Chavez did not say she felt pain. She said she felt like an animal. Pain for Mrs Chavez evokes a down-to-earth ethics of respect and degradation. Narrative analysis does not say who is right or wrong, but it helps us to understand and to unfold the ethical implications of neglected everyday acts.
One benefit of a renewed attention to narrative would be an emphasis on the ethical - rather than on the strictly regulatory - aspects of undertreatment. Of course, we need effective institutional guidelines and review processes in place to combat the long-standing neglect and medical myths that prevent patients from receiving adequate pain medication.100 We need political action to combat the negative influence that licensing boards, disciplinary groups, and drug enforcement agencies exert on the medical use of opioid analgesics.101 Such pragmatic changes, however, are not enough. The distinguished philosopher of medicine Edmund D Pellegrino has recently insisted in a discussion of emerging ethical issues in palliative care that - given the availability of effective medications - not to relieve pain optimally is "tantamount to ethical and legal malpractice.''102 Serious inquiry into the ethics of undertreatment may avoid a deluge of legal challenges.
We lack medications to relieve suffering that are as effective as opioids in relieving pain. There is, however, an equally serious issue to face. The best medical approach to suffering is not always aggressive action. Although medicine prefers action and thrives on problem-solving, sometimes little or nothing can be done. Surgeon Sherwin B Nuland writes, "The diagnosis of disease and the quest for overcoming it with his intellect are the challenges that motivate every specialist who is any good at what he does. He is fascinated with pathology. When faced by the certainty of his own impotence to treat it, the would-be healer too often turns away.''103 This is unfortunate, but not surprising. When medical practice becomes preeminently an arena of action, inaction is usually misinterpreted as failure. Yet sometimes suffering will run its terrible course regardless of any intervention. In such cases, there is great value in openly discussing the role of witness.
An almost inescapable logic drives professional disciplines to remove human experience from its flow in everyday local worlds and to reshape it in accordance with the needs of the profession that addresses it.104 This logic proves dangerous when it comes to the experience of suffering. Therefore, as a complement to the preferred medical stance of active, even heroic, practice, it is important to consider the role of witness. Witness comes from an Old English verb meaning "to know.'' The witness is someone who knows first hand, and such knowing is not a passive possession, mere looking or seeing, as opposed to practice. Witnessing is an action. The witness is one who - in the medical term derived from a Latin root that means "to bend to, to notice'' - "attends,'' and such vigilant attending requires far more than physical presence. The witness cannot erase suffering, prevent tragedy, or defeat death. When suffering is inescapable, however, the active role of witnessing opens up possibilities that can in part offset or redeem sheer loss. The decision to be present, as witness, is an ethical choice. Moreover, the presence of the witness can comfort the person who suffers, and there is no higher act, inside or outside medicine, that we are called upon to perform. However, inability to witness during the dying process or at the death itself must not be regarded as weakness of character, lack of moral fiber, or paucity of empathy. The emotions may simply be too powerful for an ordinary person to withstand. Unfortunately, this inability can also produce life-long guilt and recriminations in the survivor, movingly expressed by a son:
Whose hands held her? Were they mine? Did I stay to rage against the dark To hear the last beat of her heart? Did I quench my fears, did I stand fast? Did I stay with her until the last? Did I comfort her as best I could? Did I cry for her as a loving son should? Did I hold her hand as she died? I said I did, but I lied Just to myself at first, to dull the pain, Ease the guilt, erase the shame. The more the lie soothed and seduced The more I believed it to be the truth. Told others the tale, believed it myself, How I was there until her very last breath. In my mind how fine the picture had become -Dying mother, dutiful sorrowing son. But the truth, oh the truth, screams to be heard. No more lies, no more lies, no more lies. I was not there.
I could not, I would not, stay, So I ran - I ran away
You're hard and you're cruel, Jimmy Dancer, You just don't take life, but dignity as well.
Eric Bogle, Jimmy Dancer, © Larrikin Music Publishing Pty Ltd. International copyright secured. All rights reserved. Reprinted with kind permission of Larrikin Music Publishing Pty Ltd.
Jimmy Dancer - rhyming slang for cancer.
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