The Art and Science of Infusion Nursing Jennifer Trautmann, PhD, RN, FNP-BC

Moral Distress Recognition, Diagnosis, and Treatment

ABSTRACT Infusion nursing is a unique hybrid of inpatient and ambulatory nursing. The subspecialty of nurses cares for patients requiring treatment over long periods, including cancer patients receiving chemotherapy and patients who require short bursts of treatment, such as those with multiple sclerosis, Crohn’s disease, and rheumatoid arthritis. Infusion nurses are exposed to many of the common root causes of moral distress in their practice, similar to nurses caring for terminally ill or critically ill patients. The specific aims of this article are to (1) define moral distress, moral residue, and the crescendo effect; (2) describe ethical stressors that can be confused with moral distress; (3) review the effects of moral distress on different health care providers; and (4) provide strategies to manage moral distress in the workplace using a case example. Key words: decision-making, ethics, infusion nursing, moral distress, moral residue

Author Affiliation: Formerly from the University of Virginia, School of Nursing, Charlottesville, Virginia. Jennifer Trautmann, PhD, RN, FNP-BC, received her doctoral degree from the University of Virginia, Charlottesville, Virginia. She is currently a Morton K. and Jane Blaustein Post Doctoral Fellow in Mental Health and Psychiatric Nursing at Johns Hopkins University School of Nursing, Baltimore, Maryland, Jennifer has 20 years of nursing experience and 13 years of experience as a nurse practitioner. Her dissertation focused on relationships regarding advanced practice autonomy and moral distress of emergency department nurse practitioners. Her current research interest is in child mental and behavioral health and implementing parenting interventions to preschool families. Her long-term research goal is to adapt an evidence-based parenting program for military families with young children. The author of this article has no conflicts of interest to disclose. Corresponding Author: Jennifer Trautmann, PhD, RN, FNP-BC, Johns Hopkins University School of Nursing, Baltimore, MD ([email protected]). DOI: 10.1097/NAN.0000000000000111

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thical dilemmas and moral distress are encountered in all aspects of health care. An ethical dilemma is defined as a situation with at least 2 or more morally justifiable solutions, none of which is entirely satisfactory.1 Moral distress is defined as a situation in which an individual believes he or she knows the ethically appropriate action to take but is unable to take the action.2 The phenomenon of moral distress is receiving a great deal of recognition in medical literature because it has been linked to occupational burnout and intent to leave a current position or profession.3,4 Institutions are beginning to take notice of the impact of moral distress and are developing intervention strategies to alleviate morally troubling situations to give health care personnel tools to work through such scenarios and reduce the impact of moral distress on the work environment.5 This article will focus on moral distress and will discuss methods to alleviate root causes in the workplace.

REVIEW OF THE LITERATURE

Differences in Moral Distress Regarding Nurses, Physicians, and Nurse Practitioners In studies of critical care nurses, physicians, nurse practitioners (NPs), and other health care personnel, moral distress appears to affect health care providers in all clinical settings. Early studies focused on critical care nurses and physicians and found that moral distress was common.4,6-8 Moral distress is also reported in NPs in primary (family practice or outpatient) and acute care settings, as well as in medical students.9-11 Moreover, registered nurses tend to have higher levels of moral distress than other health care personnel.7,8,12 Recent studies of nurses and NPs working in emergency departments suggest that their moral distress levels are comparable to levels of nurses working in the intensive care arena.11,13 Authors often note that nurses spend the most time with patients and are

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responsible for implementing treatments and witnessing patient suffering and are more likely to contend with morally distressing situations over time.7,8,10,14 Root-Cause Similarities and Differences Among Nurses, NPs, and Physicians Several root causes of moral distress are discussed in the research literature for nurses, NPs, and physicians. A root-cause analysis is a method of solving a problem or addressing a nonconformance (e.g., fault of problem) of a situation. In a study of critical care nurses, the most frequent causes of moral distress were following family wishes to continue life support despite its not being in the patient’s best interest; initiating lifesaving measures, prolonging the end of life; continuing participation in care when no decision can be made to terminate life sustainment; and following orders for aggressive treatment of terminally ill patients.7 Studies of physicians and nurses indicate that some root causes may be different between the 2 groups. For example, in Hamric and Blackhall’s7 study, rankings of root causes for physicians and nurses indicate that urging families to commit to a do-not-resuscitate order so that futile therapy could be withdrawn and admitting to withholding information from patients or families were more problematic for physicians than for nurses. Conversely, Hamric, Borchers, and Epstein8 establish that both nurses and physicians found following families’ wishes to continue life support in futile care or initiating extensive lifesaving actions that prolong life as a shared root cause of moral distress. Trautmann’s11 study of NPs in the emergency department suggests there are similarities as well as differences with nurses, NPs, and physicians. Root causes of moral distress shared among nurses, physicians, and NPs included providing care that doesn’t relieve suffering because of the fear of pain medication’s causing death and lack of provider continuity.7,8,10,11,13 In addition, diminished patient care quality because of poor team communication and concern for causing death by giving too much pain medication are similar root causes with nurses and NPs; watching patient care suffer because of a lack of provider continuity, provider incompetence, or lack of staffing are similar root causes shared with physicians by NPs.8,11 Because NPs have a unique role as registered nurses with additional education to diagnose and treat patients, this may be the reason NPs share root causes of moral distress with nurses and physicians.

constraints related to insurance.9,15,16 Compassion fatigue is the caregiver’s having less sympathy while caring for a patient because of repeated exposure to situations requiring substantial amounts of compassion.17 An ethical dilemma is a conflict of 2 or more moral principles in which a choice is necessary to resolve the dilemma. Many authors equate psychological stressors, compassion fatigue symptoms, or ethical concerns as moral distress. For example, Godfrey and Smith18 reported that the NPs they interviewed experienced moral dilemmas, conflicts, and outrage, as well as moral distress in their practice. However, the differences among the concepts were blurred because the participants reported that each concept challenged both their moral and professional integrity but were not clear how it was moral distress. In a study of student nurse anesthetists, participants reported that when their professional responsibilities increased, they often experienced the psychological components of crying, fear, and low self-worth, defined as moral distress by the author.16 Moral distress certainly has emotional and psychological components, but the key distinction is not only is the provider experiencing frustration or outrage, as described by the student anesthetists, but the provider is also feeling pressured into moral wrongdoing. This concept has been highlighted in the literature with the importance of clearly defining moral distress from emotional or psychological stress in research dissemination.19 More research is needed to differentiate moral distress from other stressors, move away from merely determining the prevalence of moral distress, and begin isolating the concept to determine interventions alleviating moral distress for health care providers.20 Another confusing concept in the literature is compassion fatigue. Compassion fatigue symptoms—including dreading going to work, feeling fatigued, and loss of joy in life—have been studied in both oncology and emergency nurses and have been linked to burnout.17,20 Finally, the concept of an ethical dilemma is often confused with moral distress in the literature. Examples of ethical dilemmas are constraints to practice related to insurance guidelines, issues with colleagues, and organizational issues. While these examples are important and distressing for the health care provider, these external constraints to practice are ethically distressing (e.g., emotional stress of the job, patient decisions), but not a morally distressing situation (e.g., infringe upon the provider’s morality).18,21-25

Concepts Mistaken for Moral Distress In the literature and in practice, moral distress is sometimes confused with other stressors, including psychological stress, compassion fatigue, and ethical dilemmas. Psychological stress is caused by tasks indigenous to the job, such as time constraints with patients or treatment 286 Copyright © 2015 Infusion Nurses Society

Moral Residue and the Crescendo Effect Moral distress is a more complex concept than its current definition would indicate. For example, moral distress is present while a situation unfolds, but it is also present long after the situation resolves. Jameton2 Journal of Infusion Nursing

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defined this as residual distress, now called moral residue.14 When asked to remember a morally distressing situation, many clinicians can recall the situation in great detail, including their frustration and distress at having felt they were complicit in doing wrong. This is moral residue, and there is some concern that moral residue builds with each exposure to morally distressing situations. The buildup of moral residue is identified in the literature as the crescendo effect.14 There is some evidence that increased levels of moral distress, and presumably moral residue, may lead to burnout or intent to leave practice or even the profession.3,7,14 Intent to Leave and Moral Distress Studies of nurses have found powerlessness, low job satisfaction, age of provider, gender, education, and ethnicity to be factors influencing the decision to leave a position.26,27 When measuring moral distress with the moral distress scale-revised in research studies, participants with higher moral distress scores were more likely to report they were considering leaving their position or that they had left their position than those with lower moral distress scores.8,11,13 With a workplace climate of high staff turnover, costliness of training new personnel, and an aging nursing profession, it is important to identify moral distress.4,28 In a recent national survey of emergency department NPs, moral distress scores were the only statistically significant factor in predicting an NP’s intent to leave her or his current position.11 In other studies, nurses and physicians with high moral distress scores also had a higher incidence of leaving or having already left a position.7,8 Thus, it is vital to the health of a department or organization to identify moral distress and make changes to alleviate stress to health care workers so they can work in an environment conducive to caring for and treating patients.

RESOLUTION OF MORAL DISTRESS—WHERE TO BEGIN? There are several ways to determine a path toward resolving a situation of moral distress.5 One strategy is analyzing a case study that exhibits a morally distressing scenario. A case model approach permits exploration of possible questions, angles, and avenues specific to a “typical” dilemma found in a clinical setting. After implementing an analysis method for deconstructing the morally distressing case and rendering the potential solutions, the esteemed result should be a thoughtful, compassionate solution agreeable to the patient, family, healthcare professional, and institution. A moral distress case study, like the one here, can have many nuances and potential soluVOLUME 38

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tions, depending on the individuals discussing the scenario. Consider the following case: Case Study BA is a 52-year-old Indian male with relapsing remitting multiple sclerosis (RRMS). He lives with his spouse and has 2 grown children, ages 24 and 21. He is a minister in the Seventh-Day Adventist Church and works 50 hours a week. He has had RRMS for 15 years, having been diagnosed after presenting early symptoms of difficulty with walking and balance. Early treatments were initially effective. In the past few months, however, BA has had more progressive symptoms of his RRMS, including cognitive impairment, bladder and bowel dysfunction, and pain, causing him to have difficulty maintaining his position in the church. More aggressive therapies, including infusion therapies, were attempted. BA started infusion therapy and continued to have progression of his secondary-progressive multiple sclerosis (SPMS) symptoms. After 7 weeks of therapy, BA was in a motorized chair and sleeping through his infusions. When his daughter visited from medical school, he was confused and could not remember the name of her fiancé. Several nurses have noted that BA is getting weaker and is having trouble finishing his infusions because of pain and fatigue. They are concerned that the infusions are no longer helpful, but that they are prolonging the inevitable. The nurse manager has noticed that when BA is on the schedule, many nurses request not to care for him. When pressed for a reason, one nurse stated, “I just can’t continue to give him medications that I think are prolonging his suffering. We have known BA and his family for years, since he started getting his interferon beta infusions, and over these last several months, he really has declined.” The family tells the oncologist and rheumatologist that they want everything to be done for BA because the daughter is getting married in 6 months, and she wants BA to “be there on her day.” The NP working with the oncologist comes in during his infusions and continues to tell BA and his family that “everything” will be sorted out by the wedding. As a department member or a manager, if you are suspicious that you or your coworkers are suffering from moral distress, it is often difficult to determine the next step in alleviating the problem. One method created to manage moral distress is the “4A’s to Rise Above Moral Distress,” developed by the American Association of Critical-Care Nurses.29 The 4A’s include: ask, affirm, assess, and action. First, communicate your professional or department concerns effectively and ask others you work with to understand and explore exactly what the root causes of the distress are. Communicating with colleagues and coworkers may then affirm your moral distress and allow for a root-cause analysis and Copyright © 2015 Infusion Nurses Society

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discussion. Furthermore, professional obligations must be considered to successfully work through the dilemmas as a team. As the morally distressing event is revealed and assessed, the individuals involved in the dilemma need to evaluate for barriers, opportunities, and consequences toward resolution.5 Finally, after gathering all information about the situation and analyzing the angles of the problem, a plan of action is implemented to alleviate the moral distress, with strategies considered to cope with potential setbacks and continued communication for process improvement. Case Study Continued The nurse manager understands that the nurse in the infusion center is experiencing feelings of powerlessness as a result of following orders to continue aggressive treatment in a terminally ill patient. First, he speaks to the nurse who divulged the reason he was uncomfortable treating BA and acknowledged his moral distress. The nurse manager next calls the NP and discusses the case of BA and asks if the oncologist and rheumatologist have discussed prognosis and short- and long-term goals of the current treatment regimen. The NP agrees that a team approach to the future treatment regimen is needed, and the family needs to be involved. The NP coordinates a meeting with the specialists, case management, the infusion center nurse manager, and the family to discuss the management of BA’s SPMS. The family decides that BA would want to have his symptoms managed and have less emphasis placed on slowing the progression of the SPMS. The antineoplastic agent is stopped, and the methylprednisolone infusions and oral methotrexate are restarted. Treatment for the urinary tract infection is continued. Palliative care in the home is started, assisting the family with BA’s daily care. It is important to have a plan in place for managing moral distress situations in the workplace. Allowing for concerns to be voiced and acknowledged, then initiating an action plan, all assist in maintaining a healthy work environment. In the author’s university health system, a moral distress consult service was implemented to review moral distress incidents in the hospital. The service is similar to an ethics consult service, which is often found in hospitals or health systems, but focuses on moral distress situations.5,14 Another viable solution to alleviate moral distress is offering workshops educating nurses and other health care providers about the root causes of moral distress and how to communicate with other members involved with the dilemma and create plans of action.5 There are many other styles of coping with moral distress in the workplace, and the first one you and your department choose may or may not be the one that solves the issue.5 In all potential solutions and plans of action, communication and creating a collegial

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and collaborative environment are key components to success in alleviating moral distress.

CONCLUSION Moral distress is a real-life clinical issue affecting all health care professionals; nurses are particularly vulnerable to this problem. If moral distress is not identified and treated in the workspace, health care providers could have repeated, unresolved cases of moral distress, leading to moral residue and, subsequently, a crescendo effect leading to burnout and intent to leave the position or profession. Root causes of instances of moral distress are lack of communication, futile care, working with less competent colleagues, and initiating lifesaving procedures that may not be in the patient’s best interest, to name a few.7,8,11 Moral distress is often mislabeled in the literature as compassion fatigue, ethical dilemma, or psychological stress; these concepts would require different interventions for resolution. Moral distress is important to identify because it has been linked to health care providers’ intent to leave their position or profession and burnout. Fortunately, there are plausible and obtainable solutions to manage moral distress in the health care workplace. If faced with moral distress, a mnemonic to remember is the 4A’s: ask, affirm, assess, and action.29 In addition to effective communication and building supportive networks within a department and facility, there are other avenues to address moral distress, including a moral distress consult service or workshops devoted to identifying and alleviating moral distress. Identifying moral distress in the workplace and acknowledging the problem as moral distress is important in maintaining the moral integrity of the health care provider.5 Alleviating moral distress in the health care workplace will help health care workers feel influential in their clinical practices. REFERENCES 1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 6th ed. New York, NY: Oxford University Press; 2009. 2. Jameton A. Nursing Practice: The Ethical Issues. Englewood Cliffs, NJ: Prentice-Hall; 1984. 3. Meltzer LS, Huckabay LM. Critical care nurses’ perceptions of futile care and its effect on burnout. Am J Crit Care. 2004;13(3):202-208. 4. Elpern EH, Covert B, Kleinpell R. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care. 2005;14(6):523-530. 5. Epstein EG, Delgado S. Understanding and addressing moral distress. Online J Issues Nurs. 2010;15(3):Manuscript 1. http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Courage-andDistress/Understanding-Moral-Distress.html#Epstein. Accessed February 18, 2015. 6. Corley MC. Moral distress of critical care nurses. Am J Crit Care. 1995;4(4):280-285.

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7. Hamric AB, Blackhall LJ. Nurse-physician perspectives on the care of dying patients in intensive care units: collaboration, moral distress, and ethical climate. Crit Care Med. 2007;35(2): 422-429. 8. Hamric AB, Borchers CT, Epstein EG. Development and testing of an instrument to measure moral distress in health care professionals. AJOB Prim Res. 2012;3(2):1-9. 9. Laabs CA. Moral problems and distress among nurse practitioners in primary care. J Am Acad Nurse Pract. 2005;17(2): 76-84. 10. Wiggleton C, Petrusa E, Loomis K, et al. Medical students’ experiences of moral distress: development of a web-based survey. Acad Med. 2010;85(1):111-117. 11. Trautmann J. Relationships Among Moral Distress, Level of Practice Independence and Intent to Leave of Emergency Department Nurse Practitioners [doctoral dissertation]. Charlottesville, VA: University of Virginia; 2014. 12. Knifed E, Goyal A, Bernstein M. Moral angst for surgical residents: a qualitative study. Am J Surg. 2010;199(4):571-576. 13. Fernandez-Parsons R, Rodriguez L, Goyal D. Moral distress in emergency nurses. J Emerg Nurs. 2013;39(6):547-552. 14. Epstein EG, Hamric AB. Moral distress, moral residue, and the crescendo effect. J Clin Ethics. 2009;20(4):330-342. 15. Laabs CA. Primary care nurse practitioners’ integrity when faced with moral conflict. Nurs Ethics. 2007;14(6):795-809. 16. Radzvin LC. Moral distress in certified registered nurse anesthetists: implications for nursing practice. AANA J. 2011;79(1):39-45. 17. Joinson C. Coping with compassion fatigue. Nursing. 1992;22(4):116, 118-120. 18. Godfrey NS, Smith KV. Moral distress and the nurse practitioner. J Clin Ethics. 2002;13(4):330-336.

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19. McCarthy J, Deady R. Moral distress reconsidered. Nurs Ethics. 2008;15(2):254-262. 20. Potter P, Deshields T, Divanbeigi J, et al. Compassion fatigue and burnout: prevalence among oncology nurses. Clin J Oncol Nurs. 2010;14(5):E56-E62. 21. Viens DC. The moral reasoning of nurse practitioners. J Am Acad Nurse Pract. 1995;7(6):277-285. 22. Butz AM, Redman BK, Fry ST, Kolodner K. Ethical conflicts experienced by certified pediatric nurse practitioners in ambulatory settings. J Pediatr Health Care. 1998;12(4):183-190. 23. Ulrich C, Soeken K, Miller N. Predictors of nurse practitioners’ autonomy: effects of organizational, ethical, and market characteristics. J Am Acad Nurse Pract. 2003;15(7):319-325. 24. Ulrich CM, Soeken KL. A path analytic model of ethical conflict in practice and autonomy in a sample of nurse practitioners. Nurs Ethics. 2005;12(3):305-316. 25. Ulrich CM, Danis M, Ratcliffe SJ, et al. Ethical conflict in nurse practitioners and physician assistants in managed care. Nurs Res. 2006;55(6):391-401. 26. Fitzpatrick JJ, Campo TM, Graham G, Lavandero R. Certification, empowerment, and intent to leave current position and the profession among critical care nurses. Am J Crit Care. 2010;19(3):218-226. 27. De Milt D, Fitzpatrick J, McNulty R. Nurse practitioners’ job satisfaction and intent to leave current positions, the nursing profession, and the nurse practitioner role as a direct care provider. J Am Acad Nurse Pract. 2011;23(1):42-50. 28. Corley MC, Elswick RK, Gorman M, Clor T. Development and evaluation of a moral distress scale. J Adv Nurs. 2001;33(2):250-256. 29. American Association of Critical-Care Nurses. The 4A’s to Rise Above Moral Distress. Aliso Viejo, CA: American Association of Critical-Care Nurses; 2004.

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Moral Distress: Recognition, Diagnosis, and Treatment.

Infusion nursing is a unique hybrid of inpatient and ambulatory nursing. The subspecialty of nurses cares for patients requiring treatment over long p...
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