Ethics and Pain Management: An Introductory Overview

PAIN MEDICINE Volume 2 • Number 2 • 2001 Ethics and Pain Management: An Introductory Overview Linda Emanuel, MD, PhD The Buehler Center on Aging, Northwestern University, Chicago, Illinois ABSTRACT Key Words. Professionalism; Comfort; Trustworthiness; Pain; End-of-Life Care; Opioids; Physicianassisted Suicide; Terminal Sedation; Doctrine of Double Effect; Controlled Substances; Access; Chronic Conditions S pecialists in pain management are guided by the ethics that are appropriate to the profession in general, just as are clinicians in other areas. But some issues of particular relevance to the specialty also occur. Accordingly, this overview first reviews the professional imperative to address suffering and then addresses concerns that arise in pain management. It focuses especially on concerns that arise as part of chronic care or care near the end of life. Clinician-assisted suicide, terminal sedation, and the doctrine of double effect receive some attention in this review, as do related policy issues. Finally, because the principles may be simple and easy to agree with but difficult to balance and put into practice, two cases are examined. Professionalism and the Relief of Suffering The professional imperative can be summed up in a few short adages. The professional in health care aims to cure, to comfort, and to avoid harm. The professional aims to practice in a manner that is evidently trustworthy. Trustworthiness requires practice within standards that are objectively valid and that are free of or distanced from ulterior motives. Reprint requests to: Linda Emanuel, MD, PhD, Director, The Buehler Center on Aging, The Education for Physicians in End-of-Life Care Project, The Program on Professionalism, Northwestern University, 750 N. Lake Shore Drive, Chicago, IL 60611. Tel: (312) 503-2772; Fax: (312) 503-2781. © Blackwell Science, Inc. 1526-2375/01/$15.00/112 112–116 These features are evident in major codes of ethics and clinician prayers that are variously simple or elaborate and that have come from different ages and different cultures. For instance, they are evident in declarations as divergent in their origins as the Hippocratic Oath, the Clinician’s Prayer and the American Medical Association Code of Ethics. The ethical imperative that is of particular relevance to the pain specialist is the obligation to comfort. In this era of scientific enthusiasm when the possibility of cure seems within reach for so many, the profession as a whole has underemphasized its mandate to comfort. The irony is that symptom palliation is also more sophisticated and powerful than any previous time in human history. Comfort is often presumed to be a second-best low-tech option for the incurable rather than a necessary component of many acts of healing and care. Most clinicians can recall patients for whom suffering was ignored while a cure was pursued or patients who received the label of “malingerer” or “addict” and were left with no treatment for their discomfort. The pain specialist is particularly well placed to help return some balance, bringing a blend of compassion and expertise to the clinical encounter. The pain consultant can both improve individual patient care and provide teaching to colleagues. The second key ethical mandate for pain management is to avoid harm. In of itself, the principle is simple and its achievement presumably within 112 Downloaded from https://academic.oup.com/painmedicine/article-abstract/2/2/112/1859173 by guest on 24 May 2020 Professionals cure and comfort, and they do so in a trustworthy fashion. Pain specialists encounter some special issues as they seek to fulfill their professional mandate. Some key ethical issues that arise are described including situations involving end-of-life care needs, physician-assisted suicide requests, terminal sedation, doctrine of double effect, and chronic conditions. Policy issues are also described, including those related to controlled substances and access to pain treatment. This overview is an introductory presentation; it is supplemented by two cases, each with an analysis applying some of the ethical considerations described. 113 Ethics Overview End-of-Life Care Some statistics highlight challenges in this area. About half of all patients facing death report moderate to severe pain. Complicating matters is the companion statistic that only about one tenth would want more treatment. Important further complications arise from the array of different sources of physical and mental suffering that exist and often from many symptoms simultaneously. Patients facing the end of life commonly experience nausea and vomiting, incontinence and/or constipation, weight loss, weakness, fatigue, dyspnea, loss of function, depression, anxiety, and confusion. The symptoms of confusion, depression and anxiety, dyspnea and constipation are among those with special relevance here due to their common occurrence as associated adverse effects of pain treatment. Less data are available for children facing terminal illness than for adults, but it should come as no surprise that when surveyed, more than 80% suffer from pain. Parents report that almost as many have successful pain treatment. Nonetheless, the compassionate clinician must be aware of the difference between parental and patient reports of pain and of the psychological investment of parents that can cause either over- or underappreciate their children’s suffering. Professionals also have strong feelings about pediatric suffering and dying. The in- tense responses of professionals and family to dying children may also be responsible for irrational action. Greater recognition of pediatric suffering and all its complex consequences for others is necessary. The barriers to pain management and other symptom control may well be the same for adults and children, although there are little data regarding the latter. Patients, families, nurses, and clinicians are all involved in common misconceptions and irrational decisions. Overall, fear of addiction, dislike of side effects (especially confusion), social and personal connotations of using opioids, personal interpretations of the meaning of suffering, communication difficulties, problematic interactions with “difficult patients,” denial, and inadequate professional, patient, and family education are all operative factors. An additional complex barrier may involve the frequent omission of mental, social, and spiritual assessment resulting in missed diagnoses. The impact of suffering in any of these domains in increasing perceived pain is reasonably established. But missed diagnoses of depression are known to remain common, and other missed diagnoses are at least as likely. When people report pain but decline pain medicine, one reason may be they may have nonphysical pain. They intuitively doubt the efficacy of pain medicine to treat the source problem even though they cannot name their pain as mental, social, or spiritual strain. In short, missed related diagnoses may be a significant barrier, and pain specialists should be alert to and have the skill to make the missed diagnosis. Each barrier to quality pain control suggests simple and effective clinical strategies that the pain specialist can use. He or she must address the informational and the psychological barriers with both technical competence and deft human interactions. Physician-assisted Suicide Few patients who are seriously interested in assisted suicide or euthanasia cite pain as the sole cause (less than 5%), although some 45% say that it is one among other motivating sources of suffering. Serious interest correlates reliably with a number of forms of suffering in the psychological and social domains of experience. These include high depression scores, unmet care needs, a sense of being a burden, and fears of future suffering, including indignity and loss of control. The ethical relevance of these facts is that the strongest argument that could justify physicianassisted suicide is commonly believed to be release from intractable physical pain. Assisted suicide as a Downloaded from https://academic.oup.com/painmedicine/article-abstract/2/2/112/1859173 by guest on 24 May 2020 reach. The balance of this principled goal with the goal of comfort is also simple on the face of it: to provide enough treatment for comfort and to avoid adverse effects. The challenge is in the practice. Practical and technical skills can often obviate the need to trade off one principled goal for another. But when practical or technical limits exist, comfort comes at a price, and balancing the principles of comfort and avoidance of harm may require skillful practical ethics reasoning, as well as careful listening and discussion. The third ethical mandate to maintain trustworthy practices also initially seems straightforward and presents a challenge. Studies have repeatedly suggested underuse, overuse, and misuse of pain medicine by professionals for their patients. Too little appreciation exists of the barriers that impede appropriate pain medicine use and of the strategies that could overcome the barriers. This presents a challenge to the pain specialist. To uphold the professional mandate to maintain trustworthy standards of care, the pain specialist must engage in efforts to raise and make more uniform the standard of care among all practitioners, whether pain specialists or not. 114 Terminal Sedation Terminal sedation is a source of considerable confusion. Claims that it is inherently a clandestine form of euthanasia reveal ignorance over the role of intent and the related differences in methods used to achieve sedation. The next section points out how these differences are relevant, but empirical data reveal the point concisely. From a careful study in the Netherlands, it is clear that clinicians who intended to end life tended to choose substances such as potassium chloride and muscular blocking agents that would secure death, whereas those who intended only sedation did not use them. The competent relief of suffering by sedation with opioids and benzodiazepines rarely causes lethal respiratory depression. For terminal sedation to be clearly just that and not euthanasia, the clinician must aim to sedate only to the level that relief of suffering requires. Even though terminal sedation may last for some time, the death should be attributable to the underlying illness. One relatively common confusion concerns whose suffering is being treated. Often the family member or provider projects suffering, attributing to the patient suffering that is largely their own. Clinicians should be sure, and then explain to or remind all concerned, that the sedated patient is not suffering. This can reduce the suffering of family members and professionals and their motivations to “end it all quickly.” Doctrine of Double Effect The doctrine of double effect is the logic that justifies terminal sedation. It asserts that an action to secure a desired effect can be justified even if it has predictable, unwanted, associated outcomes. A hypothetical case used by some philosophers is that of a person at the control fork of train tracks; an oncoming train or trolley directed down one track will inevitably kill many people whereas direction down the other track will kill one person. If the choice is inevitable, it is considered justifiable to direct the train down the latter, even though the unwanted outcome of the single death is known ahead of time. In the real world of clinical practice, the doctrine of double effect is both far more commonly applicable and far less applicable to euthanasia than many think. Unwanted side effects are virtually ubiquitous among medical interventions. For instance, when chemotherapy is given to a breast cancer patient there is likely to be hair loss; when beta-blockers are needed, men need to cope with the likelihood of associated impotence; and so on. These lesser evils are tolerated because of the greater good, and the interventions, like the philosopher’s trolley direction decision, are therefore considered justified. The doctrine of double effect is much less commonly applicable to terminal sedation than many think because it is usually possible to achieve sedation without hastening death. Nonetheless, occasionally the terminal sedation may contribute to the multiple disease factors that create the final events of death. If this occurs, it should be both unintended and, because of the technical ability to sedate without adverse events, rare. A question that arises commonly concerns the use of intravenous hydration and artificial nutrition or the use of other life-sustaining treatment. The point that is made is this: If the patient receives neither food nor fluid and no life-sustaining intervention, then this absence alone hastens death. This point, however, serves to raise the fact that approaches involving withdrawal or withholding of life support should all be considered before and probably used in preference to terminal sedation. This in turn makes terminal sedation a rare necessity and of shorter duration. The person who has intractable suffering due to terminal illness is often no longer eating or drinking. Pushing fluids may only increase extravasation of fluids and worsen dyspnea or other suffering due to fluid overload at this point. Nutrition usually requires invasive routes by this time and may prevent the patient from having some of the protective effects of a ketotic metabolic state. Often the patient has or would decline this and all interventions that sustain life. If this is not the case, remind the care team that withdrawal of any of these should be considered before terminal sedation. If withdrawal of life-sustaining interventions is inappropriate, terminal sedation is probably also inappropriate. If all these are already withheld, with due ethical reason, it Downloaded from https://academic.oup.com/painmedicine/article-abstract/2/2/112/1859173 by guest on 24 May 2020 solution to psychosocial suffering is commonly believed to be unjustifiable. So the fact that most physical pain can be managed, albeit with trade-offs, is important. Similarly, it is important to know that motivations toward clinician-assisted suicide tend to be more in the psychosocial than physical realm of suffering. Pain specialists may be brought in for consultation in cases when patients request assisted suicide or euthanasia. Pain specialists can help disseminate good collegial education on pain management, therefore also helping to alleviate patients’ fears of suffering. In addition to providing assurance that almost all pain can be alleviated, it is helpful to understand that terminal sedation for intractable pain can be conducted ethically. At the same time, clarity on what constitutes ethically conducted terminal sedation is essential. Emanuel 115 Ethics Overview will not be long before the condition ends the patient’s life with or without terminal sedation. Importantly for professionalism, the use of the doctrine of double effect to justify what is really clandestine euthanasia is unjustifiable. Even for those who believe that euthanasia may be justified sometimes, clandestine practice is very difficult to justify and it contributes to confusion and an understandable perception of professional untrustworthiness. The overwhelming issue for chronic conditions that demands ethical clarity in pain medicine is the fear of addiction to opioids. Pain specialists have a particular obligation to educate their colleagues about the difference between psychological dependence or true addiction, tolerance, and physical dependence. Clinicians are particularly helped to learn which indicators of true addiction to look for, such as compulsive use, loss of control over the drugs, loss of interest in pleasurable activities, and continued use of drugs despite their harmful effects. Perhaps most important of all is to educate colleagues that psychological dependence is a rare outcome of pain management, particularly if there is no history of substance abuse. The differential diagnosis is also important to impart, including pseudoaddiction (under treatment of pain) and drug diversion. It is helpful for non-pain specialists to realize that pharmacological tolerance, or reduced effectiveness to a given dose over time, tends to be overemphasized in clinicians’ and families’ minds. If chronic dosing needs increases to manage pain, it is important to suspect disease progression. Physical dependence should be understood by non-pain specialists and specialists to be a process of neuroadaptation such that abrupt withdrawal can cause an abstinence syndrome. Tapering doses can obviate the occurrence and reduce the confusion with addiction. Pain is, however, suffered by substance users as well. Pain specialists have the opportunity and the challenge to show compassion and skill in these cases. Use of protocols and contracting are both ethical and effective in many cases. It is only fair to acknowledge that the balance for patients with addiction between comfort and avoiding harm can be elusive, even with the best of skills. Controlled Substances and Policy on Clinician-assisted Suicide The debate about clinician-assisted suicide’s legal or illegal standing has been intense. The Supreme Court Access In matters of pain control, as in so many aspects of medical care, there is disparity in access. In end-oflife care, for instance, as noble as the movement aspires to be, hospice with its effective symptom control unfortunately remains an option more for the well-heeled white sectors of society than for others. Similarly, on a global scale, the United Nation’s Narcotics Control Board reports that 10% of advanced countries use 80% of all analgesic morphine and 120 poorer countries use little or none. Pain specialists should, as a professional matter, advocate for more access and fairer access. Of Theory and Practice The summary of professional imperatives and specific goals is not difficult. Professionals strive to cure, comfort, avoid harm, and practice by objective and trustworthy standards. The balance of securing comfort while avoiding adverse effect is the goal. Clinical reality, however, is endlessly challenging. Two cases will illustrate some of the contrasts. Case 1 A 59-year-old woman with chronic painful nonhealing skin ulcers had just had surgery to create a skin flap over an excised ulcer. Her postsurgical management involved a self-administered morphine pump. The patient had good pain control but was dozing off for about 10 minutes after her self-administered boosts. Several nurses, the pharmacist, and covering house officer expressed alarm, fearing that Downloaded from https://academic.oup.com/painmedicine/article-abstract/2/2/112/1859173 by guest on 24 May 2020 Chronic Conditions ruled that there is no constitutional right to it but that states can make decisions individually about its legality. Currently, it is legal only in the State of Oregon and only with a series of precautionary steps. Recent initiatives to prevent clinician-assisted suicide have proposed increased stringency by the Drug Enforcement Agency, an administrative arm of the law delegated largely to professional control. This proposal would involve terminating a clinician’s license to practice if controlled substances are used for clinician-assisted suicide. Studies of the quality of pain control provided to the dying in Oregon find a correlation of all these initiatives, whether to legalize or to debate clinician-assisted suicide, with worsening pain control. The pain specialist has an important role in teaching how comfort can be secured without recourse to highly controversial actions. 116 the patient would inadvertently cause respiratory arrest. Case 2 A premature infant suffered a cerebral bleed. Respirator dependent and suffering intractable status epilepticus, hope for the infant’s survival waned and disappeared. The parents and clinician decided to withdraw life support, understanding it to be a prolongation of suffering before inevitable death. The decision was made after following fully the needed steps for ethical decision making, and the rest of the care team supported it. Aiming to provide the parents with an opportunity for a healing goodbye, the clinician administered an opioid, a benzodiazepine, and a muscular blocking agent. The parents cradled a peaceful-appearing infant as soon as ventilator removal allowed. Other members of the care team, however, were unexpectedly concerned. Comment. The key problem in this case is the use of the neuromuscular blocking agent. The clinician’s intent was to prevent seizure activity during the dying embrace. However, this approach could have merely masked seizures and suffering by the infant, who could well have been roused from sedation by the powerful stimulus of progressing anoxia. Without evidence of distress, the clinician cannot manage the dyspnea. Both the mandate to provide comfort and to avoid harm have been seriously compromised by a well-intentioned clinician who treated the parents at the likely expense of the baby. Once again, the pain specialist has the capacity to impart technical and informational expertise to colleagues that can help avoid ethical compromise. Withdrawal from a ventilator using sedation for symptom control should be possible using opioids, benzodiazepines, and neuroleptics. Neuromuscular blocking agents have no place in this procedure. The parents should be alerted ahead of time to the need to have additional sedatives at hand in case there is any sort of distress. Downloaded from https://academic.oup.com/painmedicine/article-abstract/2/2/112/1859173 by guest on 24 May 2020 Comment. This case illustrates the all-too-common gap in expertise that threatens professionals’ ability to provide reliable comfort. There is, in fact, no ethical dilemma here. The doctrine of double effect does not apply. Knowledge of morphine use tells us that if the pump is correctly set with a suitable lock-out interval, it is virtually impossible for the patient to do more than sleep off any excess of morphine administered in this fashion. The pain specialist can solve the team’s concerns by using common avenues for informed education—on rounds, in the medical chart, or by other means. Emanuel