585634
research-article2015
NSQXXX10.1177/0894318415585634Nursing Science QuarterlyReed and Rishel / Health and Public Policy
Health and Public Policy
Epistemic Injustice and Nurse Moral Distress: Perspective for Policy Development
Nursing Science Quarterly 2015, Vol. 28(3) 241–244 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0894318415585634 nsq.sagepub.com
Pamela G. Reed, RN; PhD; FAAN1 and Cindy J. Rishel, RN; PhD2
Abstract The focus of this article is epistemic injustice as an underlying explanation for the lack of communication associated with moral distress in frontline nurses who provide end-of-life care. Improvements in interprofessional collaboration and communication in this challenging area of practice are needed, as supported by research on moral distress and related studies. Policy development that addresses interprofessional practice inclusive of all healthcare providers, particularly frontline nurses, in deliberations about end-of-life treatment deliberations and decisions is proposed. Keywords end-of-life, epistemic injustice, frontline nurses, interprofessional communication, moral distress Nurse moral distress is particularly prevalent among frontline nurses caring for critically-ill patients nearing endof-life (Browning, 2013; Wiegand & Funk, 2012). Moral distress was initially conceptualized by Jameton (1984) and Wilkinson (1987) and then measured (Corley, Elswick, Gorman, & Clor, 2001) in terms of knowing but being constrained from taking the right action, and experiencing associated negative feelings such as emotional and mental anguish, and psychological disequilibrium. Approaches to alleviating nurse moral distress have included stressreduction strategies, ethics education, consultation with bioethics committees, and even interventions to strengthen nurses’ moral courage. Obviously, how one approaches moral distress is influenced by what factors are thought to contribute to this problem. In this article, the authors propose that epistemic injustice may be an important contributor to nurse moral distress, and suggest that hospital policy may be one approach to address this problem. The focus is on frontline nursing in the contexts of critically-ill or end-of-life patient care where moral distress often occurs. Nursing care of critically ill patients nearing end-of-life has become more complex – ethically as well as technically and scientifically, with the advances in life-support technology that can extend life indefinitely. For various reasons, greater numbers of patients are undergoing lengthy hospital stays in intensive care units rather than in palliative care settings. Behind all of these cases, nearly invisible, are frontline nurses providing intimate care 24/7 and who increasingly find themselves in ethically challenging situations (Trossman, 2014). They may hold feelings of moral wrongdoing associated with engaging in patient care that is contrary to their morals or values because
of internal or external constraints (De Veer, Frnacke, Struijs, & Willems, 2013; Hanna, 2004; Varcoe, Pauly, Storch, Newton, & Makaroff, 2012). Internal constraints may include concerns about reprimand or losing one’s job, selfdoubt, anxiety about creating conflict, lack of confidence, and a sense of powerlessness. External constraints include inadequate communication among team members, excluding the nurse from deliberations, pressure to reduce costs, fear of legal action, lack of administrative support, inadequate staffing, and hospital policies that conflict with what nurses perceive as patient care needs (Corley, et al., 2001; Hamric & Blackhall, 2007). Despite and perhaps because nurses are consistently rated by the public as the most trusted professional (Gallup, 2014), nurses carry considerable moral burden. The ubiquity of moral distress is not surprising, considering nurses’ highly regarded moral status coupled with situations in which bedside nurses must provide expert care around the clock, sometimes without full disclosure of treatment decisions, yet expected to advocate for patients and their families – all within the highly-charged moral context of end-of-life. Consider the following clinical scenario:
1
Professor, The University of Arizona Clinical Associate Professor, The University of Arizona
2
Contributing Editor: Pamela G. Reed, RN; PhD; FAAN, Professor, University of Arizona College of Nursing, 1305 N. Martin St., Tucson, AZ 85721-0203. Email: [email protected]
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A Clinical Scenario Mary is the primary nurse for Sally, a 5 year-old girl with Acute Lymphocytic Leukemia (ALL) who is post stem cell transplant. Sally’s physical condition has declined over the past several days. Her ALL has relapsed despite numerous aggressive treatment measures and she is currently receiving aggressive chemotherapy in anticipation of a second stem cell transplant. Sally’s medical condition is deteriorating and the prognosis for success with a second transplant is questionable. Sally’s parents are divorced; however both are involved in her care and healthcare decision-making. Unfortunately, her parents do not always agree regarding the best plan for Sally’s care. Dr. Smith is Sally’s pediatric oncologist and stem cell transplant physician. He and the transplant team see Sally every day during rounds. Mary is not always able to be present with Dr. Smith when he rounds so Mary is not fully aware of his current recommendations and discussions he has had with Sally’s family. Today, Sally’s family has numerous questions for Mary regarding Dr. Smith’s recommendations. Sally’s father wants to know what Mary thinks about continuing treatment, while Sally’s mother wants to know what will happen if they stop aggressive treatment. While Mary is very knowledgeable and highly experienced in caring for children like Sally, she has not been included in the discussions between Dr. Smith and Sally’s parents. As a result, she is not aware of what information Dr. Smith may have given the family. Mary, however, has formed her own opinions, based on empirical evidence and years of experiential knowledge about treatment decisionmaking and implications for patient/family quality of life. What does Mary think? Mary is now in the awkward if not morally distressing position of trying to answer questions without enough information or having been included in the original discussion. Mary is also concerned about “stepping on the toes” of Dr. Smith, yet feels obligated to provide Sally’s parents with thorough answers to the questions they have so they can make informed decisions about their child’s care.
Epistemic Injustice The scenario above can be understood from various perspectives, but one that seems most pertinent is an epistemic perspective, that is, in reference to the nurse as a knower. Although there is a trend toward interprofessional collaboration and education, the hierarchy of knowledge and authority is still very prevalent in healthcare (Price, Doucet, & McGillis Hall, 2014), such that despite their expertise and intimate interactions with patients and families, bedside nurses are not regularly consulted and their knowledge is discounted. In her 2007 book, Epistemic Injustice: Power and the Ethics of Knowing, Miranda Fricker described two types of injustice that occur in reference to individuals in their capacity as knowers. Both are forms of what she called “epistemic injustice” and both are relevant to nursing practice.
Testimonial injustice occurs when some prejudice causes the hearer to attribute a diminished level of credibility to the speaker (Fricker, 2007). For example, in one context, such as a person having a heart attack on a bus, a nurse may be regarded as having some expert knowledge. But typically this is not the case in bedside nurse-physician interactions within the context of end-of-life care deliberations and decision-making. The moral wrong of testimonial injustice is that individuals are undermined in their capacity as knowers and as rational human beings thus “to be perceived and treated as lesser in one’s capacity as a knower is to be perceived and treated as a lesser human being” (p. 295). Hermeneutical injustice is more insidious but no less an injustice. It occurs when, because of discrimination against individuals’ social identity – for example as a female, African-American, or nurse – individuals are silenced in some way and then lose confidence in their own ability to interpret their experiences (pp. 148-155). This hinders development of intellectual courage, selfhood, and well-being, as well as impoverishes disciplinary knowledge overall. Both forms of epistemic injustice share a common significance – “prejudicial exclusion from participation in the spread of knowledge” (Fricker, 2007, p. 162). What is an epistemic injustice to nurses in their capacity as knowers may also translate into a moral injustice for patients who stand to lose out on the full benefit of nurses’ knowledge in complex healthcare decisions. Fricker described this as the hybridity of epistemic injustice, being both ethical and epistemic in nature.
Research Evidence of Epistemic Injustice Although the concept of epistemic injustice has not been reported in the nursing literature, results from research on moral distress and related issues point to patterns indicative of epistemic injustice in end-of-life patient care situations. These include reports of a lack of knowledge about the end-of-life decision, lack of prognosis-related communication, lack of disclosure to nurses about their patient’s prognosis and treatment options, and feeling ‘stuck in the middle’ or ‘left out of the loop’ in not knowing yet having to confront patients’ problems and questions (McLennon et al., 2013; Savel & Munro, 2013; Woods & Bickley Asher, 2013). Other study results identify nurses’ concerns with a pervasive lack of communication regarding disagreements with physicians in decisions about end-of-life care approaches (Huffman & Fittenmeyer, 2012; Kälvermark, Hoglund, Hansson, Westerholm, & Arnetz, 2004; Pauly, Varcoe, Storch, & Newton, 2009; Pavlish, Brown-Saltzman, Hersh, Shirk, & Nudelman, 2011). Testimonial injustice was evident in the silencing found by Pavlish, Hellyer, Brown-Saltzman, Miers, and Squire (2013) in their explorations of moral distress among ICU and oncology unit nurses in their attempts to discuss their ethical concerns about patients. From a literature review, researchers (Bryon, Gastmans, & Dierckx de Casterlé et al., 2008) described nurses as being
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Reed and Rishel / Health and Public Policy sidelined in the decision-making processes involving endof-life care despite having relevant expertise and knowledge to contribute to the deliberations. Hermeneutical injustice was particularly evident in moral distress research with reports of nurses experiencing decreased self-worth and confidence in their own knowledge and ability to interpret and articulate their experiences with patients (Wiegand & Funk, 2012).
Policy Implications: Enhancing Interprofessional Communication End-of-life care demands a high level of epistemic competence ranging from knowing and detecting the subtle signs of suffering associated with end-of-life treatment to having both the opportunity and the communication skills to engage families and healthcare providers in discussions about treatment and facing end-of-life. While the concepts of interprofessional communication and practice are not new, indeed they have been a topic of interest in several healthcare professions for over 20 years; it is only recently that the implication of failure to work together as a team has become most apparent. Healthcare has become increasingly chaotic with global decreases in funding for services and increased emphasis on improved quality outcomes for end care users (Milton, 2012). Interprofessional collaboration or practice is described as healthcare professionals working together as a team to provide care to patients. Despite the fact that current literature and position statements in healthcare are “demanding” that members of professional teams be able to demonstrate competency in interprofessional communication/collaboration, the definition of what it means for acute care teams to work together collaboratively remains muddled (Milton, 2013). Unfortunately, given the stereotypical medical model of practice that persists in our country, the physician is still considered the leader of the team with communication to other team members flowing downward. Nurses are expected to work in collaboration with other healthcare professionals such as physicians, pharmacists, social workers, respiratory therapists to provide care in a safe, efficient, and cost-effective manner. Interprofessional means that “professionals in healthcare settings offer their unique disciplinary knowledge for service to individuals and families who are living particular health challenges” (Parse, 2015, p.5). In the acute care setting, the hub of interprofessional communication should reside with the nurse as the only member of the team who abides with the patient on a continuous basis. Professional nurses have obligations and ever-changing responsibilities to the patients they care for, so being active participants in interprofessional communication and collaboration is essential if nurses are to fulfill their responsibility to the people they serve (Milton, 2013). Failure of the team to recognize the importance of the role of nurses in interprofessional collaboration can lead to poorer outcomes for patients and families as well as distress for nurses providing care.
Interprofessional education (IPE) among nursing students, pharmacy students, and medical students has been occurring for years. Views on the type, content, and goals of IPE vary yet one outcome of these programs is to enable healthcare professionals to plan and deliver quality patient-centered care that is cost-effective (Fawcett, 2014). However, the translation of IPE education into actual practice in the acute care setting has been met with institutional cultural barriers, many of which have been longstanding. The question remains then as to how to effectively implement the concept of interprofessional communication in the acute care setting. In the clinical scenario provided, what is the best, most effective way to insure that Sally’s primary nurse is an active participant in the communication with the team regarding end-of-life care? One strategy to consider is the implementations of global, interprofessional communication policies in the acute care setting that provide guidance to healthcare professionals’ approach to patients and families making an end-of-life care treatment decision. The establishment of such policies could provide the structural foundation for healthcare providers to ensure that appropriate interprofessional communication and collaboration occurs so that all members of the team are on the same page and can fully support patient/family decision-making. For example, one such policy could outline a process for conducting end-of-life treatment conversations that include representatives from each healthcare profession involved in a patient’s care. Nurses and other professionals would be expected to actively participate in treatment conversations with patients/ families and their physicians. Ideally, with such policies in place, nurses would be comfortable to initiate the interprofessional collaboration discussion instead of feeling marginalized and undervalued in the organization’s hierarchical structure. In many organizations, the current process for determining end-of-life care involves only the treating physician and the patient/family. Other members of the team generally are not part of the discussion, yet are expected to answer family questions, provide support to patient/family members, and carry out the written allow natural death or do not resuscitate order. This can be a highly stressful situations particularly for nurses caring for these patients. The ability to work effectively and in concert as part of the interprofessional team when providing end-of-life care is critically important for the moral well-being of healthcare professionals and for the comfort and trust of patients/families who are recipients of that care. The development of policies, coupled with ongoing institutional support for inclusive communication and for interprofessional education, can work to effectively change organizational cultures to foster recognition and respect for the role of the professional nurse as an integral member of the interprofessional team.
Summing Up The authors began this article by proposing that the pervasive nursing moral distress is indicative of needed improvements not only in standard communication practices, but also
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in enhanced regard for nursing knowledge. The authors put a name to one of the underlying problems in this matter, epistemic injustice. It is a term that does not exist in the published nursing literature, but there is mounting evidence that the problem exists in nursing. Awareness and better understanding of epistemic injustice may offer insights and motivation useful for policy development regarding improved interprofessional practices. Skillful policy development would only be a start since this injustice may be embedded in the culture of many healthcare systems. Rallying around all of those responsible for end-of-life care – healthcare providers and family members – with effectively described policies may lead to organizational culture change and support for all who are involved in making difficult decisions. In suggesting policy development, all parties most intimately involved in enacting decisions should also be included in the conversations and consultations about those decisions. Frontline nurses are pivotal in end-of-life patient care. Targeting policy development from the perspective of frontline nurses as knowers may provide an insightful decisionmaking resource heretofore not often consulted. A goal would be to initiate and establish guidelines that inspire more inclusive interprofessional practices in end-of-life patient care contexts; these practices would not only enhance wise and timely decisions about patient care and treatment approaches, but may also diminish nurse moral distress and the abundance of problems associated with moral distress. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the authorship and/or publication of this review.
Funding The authors received no financial support for the authorship and/or publication of this review.
References Browning, A.M. (2013). Moral distress and psychological empowerment in critical care nurses caring for adults at end of life. American Journal of Critical Care, 22 (2), 143-152. Bryon, E., Gastmans, C., & Dierckx de Casterlé, B. (2008). Decision-making about artificial feeding in end-of-life care: Literature review. Journal of Advanced Nursing, 63(1), 2-14. Corley, M., Elswick, R.K., Gorman, N., & Clor, T. (2001). Development and evaluation of the Moral Distress Scale, Journal of Advanced Nursing, 33, 2250-256. De Veer, A.J.E., Frnacke, A.L., Struijs, A., & Willems, D.L. (2013). Determinants of moral distress in daily nursing practice: A cross-sectional correlational questionnaire survey. International Journal of Nursing Studies, 50, 100-108. Fawcett, J. (2014). Thoughts about interprofessional education. Nursing Science Quarterly, 27(2), 178-179. Hamric, A., & Blackhall, L. (2007). Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration,
moral distress, and ethical climate. Critical Care in Medicine, 35, 422-429. Hanna, D.R. (2004). Moral distress: The state of the science. Research and Theory for Nursing Practice, 18, 73-93. Huffman, D.J., & Rittenmeyer, L. (2012). How professional nurses working in hospital environments experience moral distress: A systematic review. Critical Care Nursing Clinics of North America, 24, 91-100. Jameton, A. (1984). Nursing practice: The ethical issues. Upper Saddle River, NJ: Prentice Hall. Kälvermark, S., Hoglund, A.T., Hansson, M.G., Westerholm, P., & Arnetz, B. (2004). Living with conflicts: Ethical dilemmas and moral distress in the health care system. Social Science & Medicine, 58, 1975-1984. McLennon, S.M., Lasiter, S., Miller, W.R., Amlin, K., Chamness, A.R., & Helft, P.R. (2013). Oncology nurses’ experiences with prognosis-related communication with patients who have advanced cancer. Nursing Outlook, 61, 427-436. Milton, C. L. (2012). Ethical implications and interprofessional education. Nursing Science Quarterly, 25(4), 313-315. Milton, C. L. (2013). Ethical issues surrounding interprofessional collaboration. Nursing Science Quarterly, 26(4), 316-318. Parse, R.R. (2015). Interdisciplinary and interprofessional: What are the differences? Nursing Science Quarterly, 28 (1)5-6. Pauly, B., Varcoe, C., Storch, J., & Newton, L. (2009). Registered nurses’ perceptions of moral distress and ethical climate. Nursing Ethics, 16 (5), 561-573. Pavlish, C.L., Brown-Saltzman, K., Hersh, M., Shirk, M., & Nudelman, O. (2011). Early indicators and risk factors for ethical issues in clinical practice. International Journal of Nursing Scholarship, 43 (1), 13 – 21. Pavlish, C.L., Hellyer, J.H., Brown-Saltzman, K, Miers, A.G., & Squire, K. (2013). Barriers to innovation: Nurses’ risk appraisal in using a new ethics screening and early intervention tool. Advances in Nursing Science, 36(4),304-319. Price, S., Doucet, S., & McGillis Hall, L. (2014). The historical social positioning of nursing and medicine: Implications for career choice, early socialization and interprofessional collaboration. Journal of Interprofessional Care, 28 (2), 103-109. Savel, R.H., & Munro, C.L. (2013). Conflict management in the intensive care unit. American Journal of Critical Care, 22 (4), 277-280. Trossman, S. (2014). When care collides with nurses’ morals and ethics. The American Nurse, 46 (4), 1, 11. Vanderheide, R., Moss, C., & Lee, S. (2013). Understanding moral habitability: A framework to enhance the quality of the clinical environment as a workplace. Contemporary Nurse 45(1): 101–113. Varcoe, C., Pauly, B., Storch, J., Newton, L., & Makaroff, K. (2012). Nurses’ perceptions of and responses to morally distressing situations. Nursing Ethics, 19 (4), 488-500. Wiegand, D.L., & Funk, M. (2012). Consequences of clinical situations that cause critical care nurses to experience moral distress. Nursing Ethics, 19 (9), 479-487. Wilkinson, J.M. (1988). Moral distress in nursing practice: Experience and effect. Nursing Forum, 23 (1), 16-29. Woods, M., & Bickley Asher, J. (2014, Dec.). Nurses and the euthanasia debate: reflections from New Zealand. International Nursing Review, Epub ahead of print doi:10.1111/inr.12145
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research-article2015
NSQXXX10.1177/0894318415585634Nursing Science QuarterlyReed and Rishel / Health and Public Policy
Health and Public Policy
Epistemic Injustice and Nurse Moral Distress: Perspective for Policy Development
Nursing Science Quarterly 2015, Vol. 28(3) 241–244 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0894318415585634 nsq.sagepub.com
Pamela G. Reed, RN; PhD; FAAN1 and Cindy J. Rishel, RN; PhD2
Abstract The focus of this article is epistemic injustice as an underlying explanation for the lack of communication associated with moral distress in frontline nurses who provide end-of-life care. Improvements in interprofessional collaboration and communication in this challenging area of practice are needed, as supported by research on moral distress and related studies. Policy development that addresses interprofessional practice inclusive of all healthcare providers, particularly frontline nurses, in deliberations about end-of-life treatment deliberations and decisions is proposed. Keywords end-of-life, epistemic injustice, frontline nurses, interprofessional communication, moral distress Nurse moral distress is particularly prevalent among frontline nurses caring for critically-ill patients nearing endof-life (Browning, 2013; Wiegand & Funk, 2012). Moral distress was initially conceptualized by Jameton (1984) and Wilkinson (1987) and then measured (Corley, Elswick, Gorman, & Clor, 2001) in terms of knowing but being constrained from taking the right action, and experiencing associated negative feelings such as emotional and mental anguish, and psychological disequilibrium. Approaches to alleviating nurse moral distress have included stressreduction strategies, ethics education, consultation with bioethics committees, and even interventions to strengthen nurses’ moral courage. Obviously, how one approaches moral distress is influenced by what factors are thought to contribute to this problem. In this article, the authors propose that epistemic injustice may be an important contributor to nurse moral distress, and suggest that hospital policy may be one approach to address this problem. The focus is on frontline nursing in the contexts of critically-ill or end-of-life patient care where moral distress often occurs. Nursing care of critically ill patients nearing end-of-life has become more complex – ethically as well as technically and scientifically, with the advances in life-support technology that can extend life indefinitely. For various reasons, greater numbers of patients are undergoing lengthy hospital stays in intensive care units rather than in palliative care settings. Behind all of these cases, nearly invisible, are frontline nurses providing intimate care 24/7 and who increasingly find themselves in ethically challenging situations (Trossman, 2014). They may hold feelings of moral wrongdoing associated with engaging in patient care that is contrary to their morals or values because
of internal or external constraints (De Veer, Frnacke, Struijs, & Willems, 2013; Hanna, 2004; Varcoe, Pauly, Storch, Newton, & Makaroff, 2012). Internal constraints may include concerns about reprimand or losing one’s job, selfdoubt, anxiety about creating conflict, lack of confidence, and a sense of powerlessness. External constraints include inadequate communication among team members, excluding the nurse from deliberations, pressure to reduce costs, fear of legal action, lack of administrative support, inadequate staffing, and hospital policies that conflict with what nurses perceive as patient care needs (Corley, et al., 2001; Hamric & Blackhall, 2007). Despite and perhaps because nurses are consistently rated by the public as the most trusted professional (Gallup, 2014), nurses carry considerable moral burden. The ubiquity of moral distress is not surprising, considering nurses’ highly regarded moral status coupled with situations in which bedside nurses must provide expert care around the clock, sometimes without full disclosure of treatment decisions, yet expected to advocate for patients and their families – all within the highly-charged moral context of end-of-life. Consider the following clinical scenario:
1
Professor, The University of Arizona Clinical Associate Professor, The University of Arizona
2
Contributing Editor: Pamela G. Reed, RN; PhD; FAAN, Professor, University of Arizona College of Nursing, 1305 N. Martin St., Tucson, AZ 85721-0203. Email: [email protected]
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A Clinical Scenario Mary is the primary nurse for Sally, a 5 year-old girl with Acute Lymphocytic Leukemia (ALL) who is post stem cell transplant. Sally’s physical condition has declined over the past several days. Her ALL has relapsed despite numerous aggressive treatment measures and she is currently receiving aggressive chemotherapy in anticipation of a second stem cell transplant. Sally’s medical condition is deteriorating and the prognosis for success with a second transplant is questionable. Sally’s parents are divorced; however both are involved in her care and healthcare decision-making. Unfortunately, her parents do not always agree regarding the best plan for Sally’s care. Dr. Smith is Sally’s pediatric oncologist and stem cell transplant physician. He and the transplant team see Sally every day during rounds. Mary is not always able to be present with Dr. Smith when he rounds so Mary is not fully aware of his current recommendations and discussions he has had with Sally’s family. Today, Sally’s family has numerous questions for Mary regarding Dr. Smith’s recommendations. Sally’s father wants to know what Mary thinks about continuing treatment, while Sally’s mother wants to know what will happen if they stop aggressive treatment. While Mary is very knowledgeable and highly experienced in caring for children like Sally, she has not been included in the discussions between Dr. Smith and Sally’s parents. As a result, she is not aware of what information Dr. Smith may have given the family. Mary, however, has formed her own opinions, based on empirical evidence and years of experiential knowledge about treatment decisionmaking and implications for patient/family quality of life. What does Mary think? Mary is now in the awkward if not morally distressing position of trying to answer questions without enough information or having been included in the original discussion. Mary is also concerned about “stepping on the toes” of Dr. Smith, yet feels obligated to provide Sally’s parents with thorough answers to the questions they have so they can make informed decisions about their child’s care.
Epistemic Injustice The scenario above can be understood from various perspectives, but one that seems most pertinent is an epistemic perspective, that is, in reference to the nurse as a knower. Although there is a trend toward interprofessional collaboration and education, the hierarchy of knowledge and authority is still very prevalent in healthcare (Price, Doucet, & McGillis Hall, 2014), such that despite their expertise and intimate interactions with patients and families, bedside nurses are not regularly consulted and their knowledge is discounted. In her 2007 book, Epistemic Injustice: Power and the Ethics of Knowing, Miranda Fricker described two types of injustice that occur in reference to individuals in their capacity as knowers. Both are forms of what she called “epistemic injustice” and both are relevant to nursing practice.
Testimonial injustice occurs when some prejudice causes the hearer to attribute a diminished level of credibility to the speaker (Fricker, 2007). For example, in one context, such as a person having a heart attack on a bus, a nurse may be regarded as having some expert knowledge. But typically this is not the case in bedside nurse-physician interactions within the context of end-of-life care deliberations and decision-making. The moral wrong of testimonial injustice is that individuals are undermined in their capacity as knowers and as rational human beings thus “to be perceived and treated as lesser in one’s capacity as a knower is to be perceived and treated as a lesser human being” (p. 295). Hermeneutical injustice is more insidious but no less an injustice. It occurs when, because of discrimination against individuals’ social identity – for example as a female, African-American, or nurse – individuals are silenced in some way and then lose confidence in their own ability to interpret their experiences (pp. 148-155). This hinders development of intellectual courage, selfhood, and well-being, as well as impoverishes disciplinary knowledge overall. Both forms of epistemic injustice share a common significance – “prejudicial exclusion from participation in the spread of knowledge” (Fricker, 2007, p. 162). What is an epistemic injustice to nurses in their capacity as knowers may also translate into a moral injustice for patients who stand to lose out on the full benefit of nurses’ knowledge in complex healthcare decisions. Fricker described this as the hybridity of epistemic injustice, being both ethical and epistemic in nature.
Research Evidence of Epistemic Injustice Although the concept of epistemic injustice has not been reported in the nursing literature, results from research on moral distress and related issues point to patterns indicative of epistemic injustice in end-of-life patient care situations. These include reports of a lack of knowledge about the end-of-life decision, lack of prognosis-related communication, lack of disclosure to nurses about their patient’s prognosis and treatment options, and feeling ‘stuck in the middle’ or ‘left out of the loop’ in not knowing yet having to confront patients’ problems and questions (McLennon et al., 2013; Savel & Munro, 2013; Woods & Bickley Asher, 2013). Other study results identify nurses’ concerns with a pervasive lack of communication regarding disagreements with physicians in decisions about end-of-life care approaches (Huffman & Fittenmeyer, 2012; Kälvermark, Hoglund, Hansson, Westerholm, & Arnetz, 2004; Pauly, Varcoe, Storch, & Newton, 2009; Pavlish, Brown-Saltzman, Hersh, Shirk, & Nudelman, 2011). Testimonial injustice was evident in the silencing found by Pavlish, Hellyer, Brown-Saltzman, Miers, and Squire (2013) in their explorations of moral distress among ICU and oncology unit nurses in their attempts to discuss their ethical concerns about patients. From a literature review, researchers (Bryon, Gastmans, & Dierckx de Casterlé et al., 2008) described nurses as being
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Reed and Rishel / Health and Public Policy sidelined in the decision-making processes involving endof-life care despite having relevant expertise and knowledge to contribute to the deliberations. Hermeneutical injustice was particularly evident in moral distress research with reports of nurses experiencing decreased self-worth and confidence in their own knowledge and ability to interpret and articulate their experiences with patients (Wiegand & Funk, 2012).
Policy Implications: Enhancing Interprofessional Communication End-of-life care demands a high level of epistemic competence ranging from knowing and detecting the subtle signs of suffering associated with end-of-life treatment to having both the opportunity and the communication skills to engage families and healthcare providers in discussions about treatment and facing end-of-life. While the concepts of interprofessional communication and practice are not new, indeed they have been a topic of interest in several healthcare professions for over 20 years; it is only recently that the implication of failure to work together as a team has become most apparent. Healthcare has become increasingly chaotic with global decreases in funding for services and increased emphasis on improved quality outcomes for end care users (Milton, 2012). Interprofessional collaboration or practice is described as healthcare professionals working together as a team to provide care to patients. Despite the fact that current literature and position statements in healthcare are “demanding” that members of professional teams be able to demonstrate competency in interprofessional communication/collaboration, the definition of what it means for acute care teams to work together collaboratively remains muddled (Milton, 2013). Unfortunately, given the stereotypical medical model of practice that persists in our country, the physician is still considered the leader of the team with communication to other team members flowing downward. Nurses are expected to work in collaboration with other healthcare professionals such as physicians, pharmacists, social workers, respiratory therapists to provide care in a safe, efficient, and cost-effective manner. Interprofessional means that “professionals in healthcare settings offer their unique disciplinary knowledge for service to individuals and families who are living particular health challenges” (Parse, 2015, p.5). In the acute care setting, the hub of interprofessional communication should reside with the nurse as the only member of the team who abides with the patient on a continuous basis. Professional nurses have obligations and ever-changing responsibilities to the patients they care for, so being active participants in interprofessional communication and collaboration is essential if nurses are to fulfill their responsibility to the people they serve (Milton, 2013). Failure of the team to recognize the importance of the role of nurses in interprofessional collaboration can lead to poorer outcomes for patients and families as well as distress for nurses providing care.
Interprofessional education (IPE) among nursing students, pharmacy students, and medical students has been occurring for years. Views on the type, content, and goals of IPE vary yet one outcome of these programs is to enable healthcare professionals to plan and deliver quality patient-centered care that is cost-effective (Fawcett, 2014). However, the translation of IPE education into actual practice in the acute care setting has been met with institutional cultural barriers, many of which have been longstanding. The question remains then as to how to effectively implement the concept of interprofessional communication in the acute care setting. In the clinical scenario provided, what is the best, most effective way to insure that Sally’s primary nurse is an active participant in the communication with the team regarding end-of-life care? One strategy to consider is the implementations of global, interprofessional communication policies in the acute care setting that provide guidance to healthcare professionals’ approach to patients and families making an end-of-life care treatment decision. The establishment of such policies could provide the structural foundation for healthcare providers to ensure that appropriate interprofessional communication and collaboration occurs so that all members of the team are on the same page and can fully support patient/family decision-making. For example, one such policy could outline a process for conducting end-of-life treatment conversations that include representatives from each healthcare profession involved in a patient’s care. Nurses and other professionals would be expected to actively participate in treatment conversations with patients/ families and their physicians. Ideally, with such policies in place, nurses would be comfortable to initiate the interprofessional collaboration discussion instead of feeling marginalized and undervalued in the organization’s hierarchical structure. In many organizations, the current process for determining end-of-life care involves only the treating physician and the patient/family. Other members of the team generally are not part of the discussion, yet are expected to answer family questions, provide support to patient/family members, and carry out the written allow natural death or do not resuscitate order. This can be a highly stressful situations particularly for nurses caring for these patients. The ability to work effectively and in concert as part of the interprofessional team when providing end-of-life care is critically important for the moral well-being of healthcare professionals and for the comfort and trust of patients/families who are recipients of that care. The development of policies, coupled with ongoing institutional support for inclusive communication and for interprofessional education, can work to effectively change organizational cultures to foster recognition and respect for the role of the professional nurse as an integral member of the interprofessional team.
Summing Up The authors began this article by proposing that the pervasive nursing moral distress is indicative of needed improvements not only in standard communication practices, but also
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in enhanced regard for nursing knowledge. The authors put a name to one of the underlying problems in this matter, epistemic injustice. It is a term that does not exist in the published nursing literature, but there is mounting evidence that the problem exists in nursing. Awareness and better understanding of epistemic injustice may offer insights and motivation useful for policy development regarding improved interprofessional practices. Skillful policy development would only be a start since this injustice may be embedded in the culture of many healthcare systems. Rallying around all of those responsible for end-of-life care – healthcare providers and family members – with effectively described policies may lead to organizational culture change and support for all who are involved in making difficult decisions. In suggesting policy development, all parties most intimately involved in enacting decisions should also be included in the conversations and consultations about those decisions. Frontline nurses are pivotal in end-of-life patient care. Targeting policy development from the perspective of frontline nurses as knowers may provide an insightful decisionmaking resource heretofore not often consulted. A goal would be to initiate and establish guidelines that inspire more inclusive interprofessional practices in end-of-life patient care contexts; these practices would not only enhance wise and timely decisions about patient care and treatment approaches, but may also diminish nurse moral distress and the abundance of problems associated with moral distress. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the authorship and/or publication of this review.
Funding The authors received no financial support for the authorship and/or publication of this review.
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