The Humanistic Dimensions of Pain and Suffering in the Clinical Setting

PRACTICAL

BioethicsVol. 1, No. 2 Aging and End of Life Spring 2005

Inside The Humanistic Dimensions Unmasking the Problem of Pain of Pain and Suffering in the by John G. Carney Page 2 Clinical Setting Keeping the Trust – By Ben A. Rich The Role of State Medical Boards in Pain Management hat pain and suffering are for her, but let a sufferer try to setting prefer numbers and pic- by Myra Christopher T inherently personal and subjec- describe a pain to a doctor and tures to words. Page 3 tive experiences is an inescap- language at once runs dry. able fact and Pain, Suffering, and the Conceptual Inno- Moving from the literary per- History of Medicine vations and Pain a fundamen- spective to the philosophical, In the history of medicine, con- Treatment – 1900 tal barrier to Elaine Scarry conveys a similar cerns about the relief of pain to the Present the effective insight: assessment and suffering have waxed and by Marcia L. Meldrum Physical pain does not merely Page 6 and man- waned. Throughout much of the agement of resist language, but actively ancient and early modern eras, destroys it, bringing about an Case Study: pain in the maxims such as “cure when immediate reversion to a state I Know What You’re clinical set- possible but relieve suffering anterior to language, to the Thinking... ting. As Scott always” were axiomatic. Yet an sounds and cries a human makes by Diane Deese and Ben A. Rich Fishman, my often-quoted “prayer” attributed before language is learned. Pat Tadel colleague in to the medieval physician-phi- Page 10 Pain Medicine at the University losopher Moses Maimonides anticipates the paradigm shift of California–Davis observes: “That pain and suf- “Pain is an untestable hypoth- that will occur, much later, with Case Study: fering are inherently Managing Pain – esis.” the advent of modern, high tech personal and subjec- medicine: “Never forget that A Family Affair The problematic nature of tive experiences is an your patient is a fellow creature by Gwendolyn London pain is exacerbated because lan- inescapable fact and in pain, not a mere vessel of and Michelle Grant guage fails us when we seek to disease.” Ervin communicate the experience. As a fundamental barrier Page 11 Virginia Woolf observed: to the effective assess- As Maimonides feared, ment and management with the rise of the curative (in English, which can express the Barriers to Pain contradistinction to the pal- thoughts of Hamlet and the of pain in the clinical Management liative) model of medicine, pain tragedy of Lear, has no words setting.” Page 12 became primarily a symptom of for the shiver or the headache… underlying disease. Solving “the The merest schoolgirl, when she Perhaps such insights are the riddle” of the patient’s disease, as falls in love, has Shakespeare reason that pain assessment tools Yale surgeon Sherwin Nuland has or Keats to speak her mind commonly used in the clinical famously written, soon became

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From the Contributing Editor Humanistic Dimensions (Continued from page 1)

the mission of the foremost practitioners of the art and science of medicine, not “pursuit of the welfare of the individual Unmasking the Problem patient.” One tragic consequence of this shift in of Pain…Where Do We Go the prevailing model of medical practice is the epidemic of undertreated pain and from Here? unnecessary suffering in contemporary patient care. It is perhaps ﬁtting that the most compelling indictment of modern medicine has been leveled by one of its From the cry and distress of birth to the undeniable effects of time and gravity on our most illustrious and articulate practitio- aging bodies, pain is a common experience. It reminds us of our mortality, protects us ners, Eric Cassell: from injury, and often calls us to heroic fortitude. But pain that is denied, disparaged, undertreated, or mismanaged does nothing good for the millions of Americans who The test of a system of medicine should suffer its ill effects on a daily basis. be its adequacy in the face of suffering…Modern medicine fails that test. In This issue of Practical Bioethics looks at the nature of pain, its history in modern fact, the central assumptions on which medicine, and its mysterious impact on the covenant relationship of patient and physi- 20th Century medicine is founded pro- cian. More particularly, this publication raises the ethical issues that acute or chronic, vide no basis for an understanding of malignant or nonmalignant pain creates for patients, their families, healthcare provid- suffering. ers, and policymakers across the broad expanse of our responsibility for each other. Our inconsistent and confusing response to pain creates far more Diagnosing the Problem than physical discomfort. The problem of pain points to untold Undertreated pain is a national public and unnecessary suffering. Depression, isolation, and lost hope health problem of major proportions. Yet cast a dark shadow on those who hurt, and lost productivity costs an exquisite irony pervades the explana- families and employers millions of dollars. Yet our conceptual tions we offer for the epidemic. Its root knowledge and pain treatment modalities far outstrip our will to causes: ignorance (exacerbated by myths end unnecessary pain and suffering. Are we still so short of reason and misinformation), indifference (the fail- and courage that we will allow myths – ancient stories about the ure to make pain relief a priority in patient transforming power of pain or modern stories about drug addic- care), and fear (of regulatory scrutiny and tion – to rule our actions? potential liability) are the antithesis of our John G. Carney Aging gracefully and dying well is a right that each of us must image of how medical practitioners should claim for self and family; it is also a possibility that we are obli- be motivated. gated to extend to others. Our hope in this issue of Practical Bioethics is for a collec- tive commitment from patients, practitioners, and policymakers to put the problem of pain clearly at the core of this discussion. “Undertreated pain is a John G. Carney national public health problem of major proportions and a national tragedy. Yet an exquisite irony pervades the explanations we offer for the John G. Carney, contributing editor for this issue of Practical Bioethics, is the Center’s vice president for aging and end of life. For more information about our programming in this area, epidemic.” see www.practicalbioethics.org.

© 2005 Center for Practical Bioethics 2 We have known for decades that medical school, nursing, and pharmacy curricula are virtually devoid of formal courses on the assessment and management of pain. Keeping the Trust — Moreover, when medical students leave the lecture halls for the wards and practice The Role of State Medical settings of internship and residency, they are mentored by senior faculty who are Boards in Pain Management encumbered by ignorance, mythology, and by Myra Christopher misinformation. Many still believe that the extended use of opioids for pain management leads to addiction, and that the risks “Pain is a more terrible lord of mankind dated nursing home resident assessment and side-effects of opioid analgesia (e.g., than even death itself.” instrument, found that among more than 2.2 million Americans living in nursing respiratory depression or sedation) out- – Albert Schweitzer weigh the benefits. homes, pain is epidemic. The consistent failure of the medical pro- More recently, a survey commissioned fession to address these deficits in the edu- Most of us have experienced serious by Vermont Attorney General Bill Sorrell cation of physicians renders it vulnerable pain at some point in our lives. Illness or (2004) revealed that 66 percent of those to the charge that it has actually cultivated disease, accidental trauma, a sports injury, who reported experiencing monthly or its ignorance about the assessment and childbirth — these are common and often more frequent pain had not sought treat- management of pain and the integral rela- painful experiences. Fortunately, for most ment. Among those who had seen their tionship between pain relief and acceptable of us, the pain is short lived. Even so, pain doctor for relief of pain, 79 percent had patient care. and its psychological imprint are signifi- never been referred to a pain specialist cant. Various although 31 percent of these patients had Pain and Public Policy studies show seen three or more doctors. that many peo- We have finally — in the last twelve to ple fear uncon- Between Doctor and Patient fifteen years — initiated a public policy trolled pain response to the phenomenon of under- The relationship between a physician and more than they treated pain. The response implicitly rec- his or her patient is unique and requires fear death. ognizes that physicians must be part of the unparalleled trust. solution. Guidelines, regulations, policy Unmanaged We reveal information to physicians statements, and statutes have been crafted Pain that we do not share with our spouses or at the state and national level to convey the other intimate relations. We allow physi- The number one message that prompt, effective, and contin- Myra Christopher cians to touch and invade our bodies in reason people uous assessment and management of pain ways that, if other people took similar seek medical help is for relief and protec- should be a priority in patient care. liberties, they would be charged with tion from pain. Yet unmanaged pain is a assault and battery. At their direction, we Medical boards have been admonished significant threat to public health. of their responsibility to disavow regula- ingest concoctions we know to be toxic. According to the American Pain tory practices that punish physicians for We do so because we believe that phy- Foundation, more than fifty million using opioid analgesics in a conscientious sicians have skills and knowledge that Americans experience chronic pain, and and responsible effort to manage pain. will enhance our health and well-being. another twenty-five million suffer acute Such boards can also help dispel the wide- We feel protected by medical ethics and pain, and both types often go untreated. spread fears of physicians that prescribing our physicians’ embrace of professional This disturbing fact was among the find- such medications, except for patients at or conduct. We also believe that our physi- ings of a Brown University study reported near the end of life, will lead to heightened cians are people of compassion. scrutiny, formal investigation, and poten- by Joan Teno et al. in the Journal of the tial disciplinary action. American Medical Association (2001). Are our beliefs justified? On a first This study, the first comprehensive visit, many of us carefully scan the office study of pain to use the federally man- walls for board certificates and diplomas

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3 PRACTICAL Bioethics

Keeping the Trust (Continued from page 3)

that symbolize competence. In most cases, In reality, the keepers of our trust in pain management is legitimate if done however, it is impossible for a patient to medical practitioners are members of state in the course of professional practice” accurately judge a physician’s compe- medical boards. Since the early twenti- (Joranson et al. 2002). tence or character. The gap between the eth century, these boards have assumed Since the early 1990s, the Federation of physician’s medical expertise and our responsibility for promoting public State Medical Boards (FSMB) has worked own knowledge — and our perception of health and for protecting the public from with its members to remedy this situation. improper medical practice and unscrupu- The FSMB gathers data, provides educa- lous behavior. It is ironic, therefore, that “Most of us also believe that tional programs for its members, develops state medical boards have contributed to our physicians are people of policy guidelines, and collaborates with the undertreatment of pain. compassion.” other organizations that affect medical practice. Barriers to Pain Management the doctor’s status and power — makes it Many factors contribute to the inadequate In 1991, the FSMB collaborated with necessary for patients to rely on a social treatment of pain: lack of education and the Pain and Policy Studies Group at the contract between medicine and society. training about pain management, restric- University of Wisconsin to survey mem- We rely on the assurance of others that our tive and outdated state laws and regula- bers of state medical boards to learn their physicians have essential virtues. tions, fears about addiction among both beliefs about prescribing opioid analge- providers and patients, and inadequate sics. The survey asked if it was “lawful/ Grounding Professional Integrity reimbursement for the treatment of pain. generally acceptable medical practice” to In exchange for the beneﬁts that physicians prescribe opioid analgesics for more than The most prominent barrier, however, is give us individually and collectively as a several months to treat patients with fear. Physicians fear they will be investi- society, we contribute signiﬁcantly to their gated by regulatory agencies for prescrib- • Chronic cancer pain education. We allow medical students to ing controlled substances, despite repeated • Chronic cancer pain and a history of experiment on us while they are in training. assurances that “prescribing opioids for drug abuse We compensate physicians at a high level.

We give them a revered title, special social

status and privileges, and exemption from certain laws. When asked how the integrity of the physician is preserved, many respond that physicians are bound by the Hippocratic Oath or the code of the American Medical Association (AMA). Although most physicians do take some oath at their gradua- tion from medical school, Americans are shocked when they learn that physicians are not bound by any particular code of medical ethics and that the majority of U.S. physicians do not belong to the AMA.

© 2005 Center for Practical Bioethics 4 • Chronic noncancer pain regulations, or statutes in more than two To be told the truth, to be assured of care, to have one’s pain managed: these are rea- • Chronic noncancer pain and a history of dozen states. sonable expectations, and with FSMB’s drug abuse The full force of the guidelines was guidance and leadership, physicians will blunted, however, by sensationalistic Fully 75 percent of respondents thought not let their patients suffer needlessly. it acceptable to provide ongoing treat- media reports regarding the diversion ment with controlled substances for can- and abuse of OxyContin, a relatively new References cer patients, but only 12 percent thought opioid analgesic. FSMB surveys taken in Teno, Joan, Sherry Weitzen, Terrie Wetle, and 1997 and repeated in 2004 indicate that the Vincent Mor. 2001. “Persistent Pain in Nursing prescribing opioids was appropriate for Home Residents.” Research Letter. Journal of the knowledge and attitudes of state medical chronic noncancer pain. American Medical Association 285(16): 2081. board members have changed. The data Committees of the National Association of If the patient had chronic noncancer pain also indicate that many barriers remain. Attorneys General Initiative on End-of-Life and a history of drug abuse, only 1 percent Care. 2005. Report to Vermont Attorney General William H. Sorrell. thought prescribing opioid analgesics for Taking the Lead that patient was acceptable. In response Joranson, David E., Aaron M. Gilson, June Last year, evidence about the continuing L. Dahl, and J. David Haddox. 2002. “Pain to these disturbing results, FSMB spon- undertreatment of chronic and acute pain Management, Controlled Substances, and State sored a series of educational programs for Medical Board Policy: A Decade of Change.” motivated FSMB to go further, and its medical board members across the coun- Journal of Pain and Symptom Management board of directors adopted a Model Policy 23(2): 138-147. try. Nevertheless, physicians continued for the Use of Controlled Substances in the to fear state regulatory boards, and their Treatment of Pain. The new policy asserts fears were exacerbated by highly publi- that “With FSMB’s guidance and cized cases that the Drug Enforcement leadership, physicians will Administration, attorneys general, and • Pain management is integral to the prac- not let their patients suffer other law enforcement agents had brought tice of medicine. needlessly.” against physicians. • Opioid analgesics may be necessary for pain relief. “This [Model Policy] provides • Use of opioids for other than legitimate a much needed ethical frame- purposes is a threat to all. Myra Christopher, president and chief exec- work for the social contract utive ofﬁcer of the Center for Practical Bioeth- • Physicians have a responsibility to min- ics, is a frequent speaker on bioethical issues between medicine and imize potential for abuse. and an advisor to many national organizations. society.” She chairs the Initiative on End-of-Life Care of This document provides a much needed the National Association of Attorneys General ethical framework for the social contract and serves on the advisory committee for the In 1998, with support from the Robert between medicine and society. It articu- Federation of State Medical Boards. Wood Johnson Foundation, FSMB lates principles that reinforce the trust that adopted Model Guidelines for the Use of underlies the physician/patient covenant. Controlled Substances for the Treatment When diagnosed with a serious or termi- of Pain. This guidelines document was nal illness, most people ask their physi- widely distributed and endorsed by the cians three questions: American Academy of Pain Medicine, the • What is wrong with me? Drug Enforcement Administration, the American Pain Society, and other health- • What can you do to help me? care providers and regulatory agencies. It • Will I have pain? was soon reﬂected in the policies, rules,

5 PRACTICAL Bioethics

Humanistic Dimensions (Continued from page 3) Conceptual Innovations and New Pain Treatments One of the most contentious issues in pain management is the extent to which the “How do we help physicians 1900 to the Present nation’s declared war on drugs has contrib- fulfill their responsibility to uted to the epidemic of undertreated pain. patients with pain, especial- by Marcia Meldrum There is no question that many physicians fear the Drug Enforcement Administration ly… pain that is significantly and its ability, under the federal Controlled chronic and of nonmalignant From 1890 to 1939 Substances Act, to investigate and pros- origin?” Stimulus-response ecute physicians for inappropriately pre- model of pain prescribing drugs or, in extreme cases, drug A few examples will suffice to indicate our dominates in medi- diversion or trafficking. When the igno- hesitant progress. cal schools. Patients rance, myth, and misinformation surround- complaining of chronic ing opioid analgesia combine with worry • In the 1990s, state medical licensing pain without clear about state and federal regulatory scrutiny, boards adopted policies and guidelines organic pathology are then fear, which has been aptly character- emphasizing the importance of pain dismissed as neurotic ized as “opiophobia,” becomes rampant in relief to good patient care and assuring or malingerers. Aspirin the medical profession. physicians that they were not at risk for provides safe relief to prescribing analgesics consistent with Marcia L. Meldrum When we declare a war on drugs but not current clinical practice guidelines. many, but surgery or on pain, physicians become conscripts in opiates are the only options for most sufferers the war; patients become noncombatant • During the same time, the Joint from severe pain. casualties, and a fundamental principle Commission for the Accreditation of of medical ethics, the duty to relieve pain Healthcare Organizations modified its and suffering, sustains grave collateral Accreditation Manual to emphasize 1891: Sir Victor Horsely and colleagues report damage. the responsibility of healthcare institu- on surgical relief of pain tions to insure that patients consistently 1899: Bayer introduces aspirin, an effective, receive effective pain relief. easily tolerated analgesic for mild to “When we declare war on But in the next decade: moderate pain drugs, but not on pain… • State and federal regulatory agencies 1905: Alfred Einhorn synthesizes procaine, first a fundamental principle of charged that physicians were inappropri- injectable local anesthetic medical ethics sustains grave ately prescribing a new time-release pain 1906: Charles Sherrington describes nociception collateral damage.” medication – OxyContin – and state and in The Integrative Action of the Nervous federal law enforcement agencies charged System physicians with substantial criminal pen- 1916: WWI surgeon Rene Leriche describes his Where Do We Go From Here? alties when a few patients encountered procedure of periaterial resection and pro- We seem to be at a place in the evolution either medical or legal difficulties while caine injection for pain following nerve of our thinking about pain management in under their care for chronic pain. injuries which for every step forward, we take at Again, on the positive side: least one, if not two steps back. How do 1929: Committee on Drug Addiction formed in we help physicians fulfill their responsibil- • Juries in two civil actions — one in North the United States to find strong nonaddic- ity to patients with pain, especially, but not Carolina in 1991, another in California in tive analgesic 2001 — awarded substantial damages to exclusively, pain that is significant, chronic, 1936: Emery Rovenstine opens first nerve block the families of elderly men whose can- and of nonmalignant origin? clinic for pain at Bellevue cer pain was not well managed in the last weeks of their lives.

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From 1940 to 1962 From 1963 to 1975 World War II brings improvements in sur- The watershed years. Discoveries and new 1973: Bonica organizes international meet- gery and anesthetic and analgesic nerve ideas in physiology, pharmacology, psychol- ing of 350 pain researchers at blocks. Nerve block clinics are started in ogy, and palliative care bring pain research- Issaquah, Washington; group founds the United States and Great Britain. A few ers and clinicians together in professional International Association for the Study doctors initiate pain research projects and collaboration and open up new possibilities of Pain begin to challenge conventional thinking. for research and treatment. 1973: Candace Pert and Solomon Snyder Over-the-counter pain relievers begin to pro- isolate the opiate receptor in neural liferate. The Committee on Drug Addiction 1964: Cicely Saunders first suggests the con- tissue is reconstituted and sponsors the testing of cept of “total pain” alternatives to morphine. 1975: Journal Pain launched under editor 1965: Melzack and Wall propose the “gate Patrick Wall control” model of pain modulation 1975: John Hughes and Hans Kosterlitz 1943: William Livingston suggests “vicious 1967: Cicely Saunders founds St. report on the discovery of enkephalin, circle” model in Pain Mechanisms Christopher’s Hospice, flagship of the first known endogenous opioid 1946: Henry Beecher suggests the influence modern hospice movement, in SE 1975: John Loeser and colleagues report of the cognitive and emotional “reac- London on pain relief through transcutaneous tion component” of pain in “Pain in 1968: Wilbert Fordyce, Roy Fowler, and stimulation (an application of the gate Men Wounded in Battle” Barbara DeLateur describe behavior control theory) 1947: Multidisciplinary pain clinics founded modification therapy for pain by Livingston in Oregon and by John 1968: Richard Sternbach writes about pain Bonica in Tacoma, Washington as a learned response of the nervous 1948: Bernard Brodie and Julius Axelrod system isolate acetaminophen (later marketed 1971: David Mayer, Huda Akil, John as Tylenol [1955]) Liebeskind, and David Reynolds 1953: John Bonica publishes Management report analgesia from electrical stimu- of Pain, begins promotion of multi- lation of brainstem disciplinary approach 1971: Melzack and W.S. Torgerson intro- 1958: Raymond Houde and Walter Modell duce the McGill Pain Questionnaire publish guidelines for clinical evalu- for pain assessment ation of analgesics, based on work of 1972: Presidential trip to China stirs new Beecher and Houde interest in acupuncture and other com- 1959: Willem Noordenbos’s Pain describes plementary therapies pain in the context of an interactive neural network 1962: Ronald Melzack and Patrick Wall publish joint article on “sensory mecha- (Continued on page 8) nisms”

7 PRACTICAL Bioethics

Pain Timeline (Continued from page 7)

From 1976 to 2005 1986: WHO publishes Cancer Pain Relief 2000: M. A. Ruda and colleagues demonstrate that neonatal inflammation can An era of excitement and frustration. 1988: Gary Bennett and Y.-K. Xie develop lead to changes in neural processing Neurophysiological, pharmacokinetic, and chronic constriction injury rat model, – that pain during early development molecular research clarify the mechanisms which mirrors chronic regional pain may affect an individual throughout of pain sensation and demonstrate that syndrome in humans life pain is indeed related to learning. New 1988: Richard S. and Kathryn A. Weiner 2001: U.S. Congress declares 2001 to 2010 pharmacological analgesics are developed, found the American Academy of Pain the Decade of Pain Control and but none that are universally effective or Management to accredit and rep- Research without side effects. Multidisciplinary pain resent pain practitioners from non- programs are organized; behavioral modi- medical disciplines 2001: Drug Enforcement Administration fication is further developed as cognitive- and twenty-one leading healthcare 1991: C.J. Woolf and S.W. Thompson dem- behavioral therapy, but again fails to help organizations publish a joint state- onstrate induction and maintenance all patients. In the absence of a better anal- ment on achieving balance between of central sensitization through gesic, pain specialists campaign for more good pain management and control NMDA receptor activation, a mecha- patient access to opioids, but meet political of drug abuse and cultural resistance. nism that perpetuates severe pain even after original triggering event 2001: Reports of OxyContin abuse appear ends in the press and trigger new actions 1977: against physicians who prescribe American Pain Society founded 1994: K. Seibert and colleagues report on opioids for chronic pain 1977: R. Lee and P.S.J. Spencer publish the role of cyclo-oxygenase 2 in review article on the use of tricyclic inflammation and pain 2004: DEA publishes jointly authored “Frequently Asked Questions and antidepressants in pain relief, spur- 1995: SUPPORT Study reports that 50 per- Answers” regarding opioid use for ring further research cent of patients in the study who were pain treatment on its website, then 1978: Robert Twycross presents evidence conscious when they died, were in abruptly withdraws them that cancer patients on long-term opi- moderate to severe pain at least half oid therapy do not inevitably develop the time, according to their families 2004: FDA removes Vioxx, a cox-2 inhibitor analgesic, from the market after it tolerance or addiction 1997: James N. Campbell, Kathleen Foley is linked to increased risks of stroke 1982: WHO expert group on cancer pain and John Liebeskind establish the and heart attack; Bextra, also a cox- relief convenes and develops “three- American Pain Foundation, the first 2 inhibitor, will be removed the fol- step ladder” for analgesia grassroots organization to represent lowing year people in pain 1983: American Academy of Algology (later the American Academy of Pain 1998: U.S. Federation of State Medical Medicine) founded as a multidisci- Boards (FSMB) adopts Model plinary group to accredit and advo- Guidelines for the Use of Controlled cate for physicians specializing in Substances for Pain pain management 2000: Joint Commission on Accreditation 1983: D.C. Turk, D. Meichenbaum, and M. of Healthcare Organizations devel- Genest publish Pain and Behavioral ops new mandatory standards for Medicine: A Cognitive-Behavioral pain assessment and management Approach

The message was clear: a standard of care for ing what they know, or should know, to be pain management can be established as law, substandard patient care. 2004: FSMB adopts Model Policy for and the failure of a physician to meet that the Use of Controlled Substances Regrettably, the regulatory environment standard will give rise to a finding of mal- in the Treatment of Pain and initi- that has contributed to rampant opiophobia practice or elder abuse (as in the California ates six conferences to train medi- in medicine and society, and which public case) and awards of compensatory and/or cal board directors policy initiatives have yet to adequately con- punitive damages (as in the North Carolina strain, requires physicians to engage in acts 2005: Virginia physician William case). Hurwitz sentenced to 25 years of moral courage to ensure that their patients for “drug trafficking” for his pre- will not be subjected to unnecessary pain and scription of opioids to chronic suffering. pain patients. DEA administrator The time is ripe for medicine to return to Karen Tandy affirms the agency’s its roots and core values, for, as a group of balanced policy and states: distinguished physicians wrote years ago in To the million doctors who the New England Journal of Medicine legitimately prescribe narcotics (1989), “to allow a patient to experience to relieve patients’ pain and suf- unbearable pain or suffering is unethical fering, you have nothing to fear medical practice.” from Dr. Hurwitz’s prosecution References and no reason to refrain from Cassell, Eric. 1991. The Nature of Suffering and providing your patients with the Goals of Medicine. New York: Oxford University pain medications when you But the response of physicians generally to Press. deem it medically necessary. these cases has been to conclude that they are Morris, Davis. 1991. The Culture of Pain. Berkeley, CA: University of California Press. 2005: between a rock and a hard place — at risk The Supreme Court rules that Nuland, Sherwin. 1993. How We Die: Reflections federal authorities may prosecute of regulatory sanctions if they aggressively on Life’s Final Chapter. New York: Alfred A. patients who smoke marijuana to prescribe opioid analgesics and vulnerable to Knopf. relieve pain and other symptoms liability claims by patients or families if they Rich, Ben A. 1997. “A Legacy of Silence: under doctor’s orders, even where do not. Bioethics and the Culture of Pain.” Journal of Medical Humanities 18:233-259. state laws have legitimized this This one step forward, two steps back Scarry, Elaine. 1985. The Body in Pain: The practice approach leads many to conclude that there is Making and Unmaking of the World. New York: no safe middle ground in which to use opioid Oxford University Press. analgesia in pain management. A concerted Wanzer, et al. 1989. “The Physician’s Respons- Marcia L. Meldrum, PhD, codirector ibility towards Hopelessly Ill Patients – A Second of the John C. Liebeskind History of Pain and redoubled effort by policymakers, physi- Look,” New England Journal of Medicine 320:844- Collection at the University of California, cians, and the public is needed to eliminate 849. Los Angeles, lectures and writes frequently on this troublesome conclusion. Woolf, Virginia. 2004. On Being Ill. Ashfield, MA: Paris Press. the history of pain and evidence-based medi- I would go further: If it is true that the duty cine. She and her colleagues have undertaken oral history research projects on the history to relieve pain and suffering goes to the very of pain science, pediatric pain management, roots of physicians’ responsibility to patients, Ben A. Rich, JD, PhD, is associate professor and the history of human genetics. then modern medicine has become alienated of bioethics at the University of California, Davis from its roots. The existence of a causal rela- School of Medicine with faculty appointments in in- ternal medicine and anesthesiology and pain medi- tionship between regulating scrutiny of pro- cine. He has lectured and published extensively on viders and the phenomenon of undertreated ethical and legal issues in pain and palliative medi- pain is compelling evidence of the medicine, advance directives, and end-of-life care. cal profession’s loss of stature and political clout. It says, in effect, that physicians collectively can be bullied and intimidated by regulators and law enforcement into provid-

9 PRACTICAL Bioethics

I Know What You’re Thinking… A Case Study by Diane Deese and Pat Tadel

Questions for Reﬂection An African American male patient, age forty-two, was admitted to a skilled nursing unit after surgery for head and neck cancer with lymph involvement, newly and Discussion diagnosed. Extensive excision of the tumor had been done, and the patient had a 1. How does this man’s history as recorded newly placed tracheostomy and feeding tube. His history included years of “living in the chart affect every encounter he has on the street” and active drug abuse at the time of admission. The patient was very with healthcare professionals? What is pre- anxious on assessment, focused on his tracheostomy, pulling on the connections, supposed by his “life on the streets”? by his to “make sure they are working” and complaining of pain “eight-to-ten” on a scale active drug use in the past? of one-to-ten, with intensity focused in the area of his surgical wounds. 2. How is even his hesitation to ring the bell for Although he receives morphine on an “as needed basis” he waits as long more morphine interpreted on the basis of his as he can to “ring the nurse” because he worries that asking for pain medi- past? What other behaviors do the nurses cite cation will “label him” with the staff. He also complains about not get- as evidence for this judgment? How does the ting much sleep, and thinking often of the poor choices that got him patient explain his behavior? Is any consider- “into this trouble.” He has anxiety related to “breathing through this ation given to the possibility that what is past tube, like I am not getting enough air in,” and ongoing pain, which “gets less but is past? never gone.” He readily admits to “risky behavior,” which had alienated him from 3. If a nurse were to walk into this patient’s family and social support for some time and is willing to discuss his years of drug room without any knowledge of his past, how and alcohol abuse. would his waiting to receive further medicine When the nurses and the attending physician describe the patient’s condition be interpreted? His not having any company? they explain that his anxiety is “probably related to being a druggie” and that his His anxiety about his condition? pain is mostly “drug seeking” in nature, as evidenced by his “calling for more 4. Review the articles and the time line in this medication a few times a shift,” and that he seems to “watch the clock.” They also issue. How would knowing something about note that this patient is a “homeless street person” who waited too long to seek the history of pain management change the help: he hasn’t held a job for some time, has no visitors, and is probably using his way we treat this patient? illness to feed his addiction. 5. Suppose that this case were brought to you Diane Deese, BA, EMT, is the director of Community Affairs at VITAS Innovative for an ethics consultation. Are concerns about Hospice Care, Chicago, Illinois. the patient’s pain relief being “drug seeking” morally relevant? Pat Tadel, MSN, RN, CHPN, a thanatologist, is director of academic programs at VITAS Innovative Hospice Care and a senior ethics fellow, MacLean Center, University of 6. Are any of the following circumstances mor- Chicago. ally germane: the patient’s homelessness, his joblessness, his apparently deliberate non- Pain Intensity Scale rehabilitation, his absence of visitors? 7. What biases do members of the clinical staff bring to this case? Are the biases justiﬁed? How do such biases affect the goals of care and proper pain management for this patient?

0 1 2 3 4 5 6 7 8 9 10 8. As a clinician, patient advocate, or member of No Moderate Worst the ethics committee, what policies or proce- Pain Pain Possible dures do you recommend to insure that this Pain patient and others will not receive unequal treatment because of these biases?

Questions for Reflection Mrs. W is a sixty-year-old African limits any additional pain medicine because American woman with a recent diagnosis he “doesn’t want her to become addicted.” and Discussion of breast cancer with metastases to the bone He tells the nurse that her church is pray- and lung. She has been married thirty-two ing that she will be relieved of pain. Mrs. 1. Discuss the patient’s autonomy years and has three adult children. Over the W complies with her husband’s wishes, but regarding her right to good pain last month, she has experienced increasing often grimaces when she is visited by hos- control versus her decision to com- pain that has not been effectively controlled pice staff (nurse, clinical nursing aid, social ply with her husband’s opinions by her physician. She has now been referred worker, chaplain). regarding her pain medication. Is to hospice, primarily to get her pain under she acting autonomously? Does As Mrs. W continues to decline she and control. her ongoing pain detract from her her husband finally agree to transfer her to competency and free choice? How After assessing the patient, the hospice an inpatient unit. Mrs. W dies four days after can we determine Mrs. W’s state of nurse recommends long-acting Morphine 30 transfer to the inpatient unit, at peace and mind? mg twice a day with short-acting Morphine completely pain free. for breakthrough pain every three or four 2. What are the psychosocial, spiri- Gwendolyn London, DMin, is president of tual, and cultural issues that influ- hours as needed. Mrs. W is also placed on London and Associates and director of the District Dexamethasone for bone pain. After recom- of Columbia Pain Initiative. ence the pain management of this mending this treatment, the nurse follows up patient? How would you approach Michelle Grant Ervin, MD, MHPE, FACEP, the integration of Mr. and Mrs. W’s with Mrs. W in twenty-four hours and finds is medical director of the Capital Hospice DC belief in prayer and their right to that Mrs. W is still experiencing pain. office, chair of the District of Columbia Pain participate in healthcare decision In discussion with Mrs. W and her hus- Initiative, and president elect of the American Alliance of Cancer Pain Initiatives. making? band, the nurse discovers that Mr. W allows his wife to take her long-acting Morphine but 3. Discuss the role of healthcare work- ers in respecting Mrs. W’s wishes while still wanting to provide her with effective treatment. Did they sufficiently inform the couple about the merits of morphine for pain control? Did they listen intently and respond to the couple’s concerns about addiction?

11 PRACTICAL Bioethics

Barriers to Pain Management

Practical Bioethics ©2005 is a quarterly • insufficient knowledge regarding the assessment and publication of the Center for Practical Bioethics. treatment of pain The Center for Practical Bioethics is a • unsound beliefs and unsubstantiated fears of addiction, not-for-profit organization dedicated to raising and responding to ethical issues in tolerance, dependence health and healthcare. Practical Bioethics offers information and resources to • economic issues professionals and consumers to promote understanding, dialogue, and practical • failure to identify pain as a priority in patient care solutions to complex, ethical issues. Statements of fact and opinion are the • fear of regulatory censure responsibility of the authors and do not necessarily represent the views of the Center for Practical Bioethics or the institutions with which the authors are If medicine is a moral enterprise, then we have ethical and affiliated. medical reasons to challenge these barriers. Editorial guidance is provided by the Center for Practical Bioethics: Myra For more information on pain management and a glossary of pain terms, visit www.practicalbioethics.org. Christopher, president and CEO; Rachel Reeder, editor. The contributing editor for Spring 2005 is John G. Carney, the Center’s vice president for aging and end of life. Editorial correspondence should be addressed to Rachel Reeder at the Center, NONPROFIT or email [email protected]. U.S. POSTAGE Subscriptions to Practical Bioethics are a PAID benefit of membership. KANSAS CITY, MO Center for Practical Bioethics PERMIT NO. 4337 Membership can be ordered online at www. Town Pavilion practicalbioethics.org or you may call or 1100 Walnut Street, Suite 2900 write the Center for Practical Bioethics. Kansas City, MO 64106-2197 Individual and organizational memberships are available. To order additional copies of this publication, contact the Center. Please include the date and subject matter of the issue with your request. Center for Practical Bioethics Town Pavilion 1100 Walnut Street, Suite 2900 Kansas City, MO 64106-2197 www.practicalbioethics.org [email protected] 816 221-1100 (phone) 816 221-2002 (fax) 800 344-3829 (toll-free)