Adverse psychosocial consequences: Compassion ...

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Mar 13, 2008 - pain and suffering often associated with cancer, palliative or end-of-life care; however, little .... to think of something neutral, bite my lip and look around. ... much for me. .... Dalhousie University School of Nursing R and D Fund.
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Review Article

Adverse psychosocial consequences: Compassion fatigue, burnout and vicarious traumatization: Are nurses who provide palliative and hematological cancer care vulnerable? Brenda M Sabo Dalhousie University School of Nursing, Canada.

Correspondence to: Brenda M Sabo 5869 University Avenue, Halifax, Nova Scotia, Canada B3H 3J5. E-mail: [email protected]

Abstract The work environment significantly affects the physical, psychological, emotional and/or spiritual wellbeing of individuals is unquestionable. Adverse effects have been noted among healthcare professionals working with clients experiencing pain and suffering often associated with cancer, palliative or end-of-life care; however, little is known about how or in which manner the nurse-patient-family relationship may affect the psychosocial health and wellbeing of nurses working in these areas. Three concepts have been highlighted as most frequently associated with the adverse consequences of caring work: these are compassion fatigue (secondary traumatic stress), burnout and vicarious traumatization. The following discussion investigates these concepts and their implications on palliative and hematological cancer nursing practice. Key Words: Burnout, caring work, compassion fatigue, vicarious traumatization

Introduction The review of literature on the health of professionals employed in the healthcare sector leaves little doubt that the work environment has a significant impact on the physical, psychological, emotional and/or spiritual wellbeing of individuals. In particular, professionals working with individuals who have been sexually, physically and/or psychologically abused appear to be the most vulnerable. Adverse effects have also been noted among healthcare professionals working with clients experiencing pain and suffering often associated with cancer, palliative or end-of-life care. However, little is known about whether, how or in what ways the nurse-patient-family relationship may affect the psychosocial health and wellbeing of nurses who provide care in these areas. Evidence highlights three concepts to be most frequently associated with Indian J Palliative Care | June 2008 | Vol. 14 | Issue 1

the adverse consequences of caring work—compassion fatigue (secondary traumatic stress),[1] burnout[2] and vicarious traumatization.[3] The following discussion provides an overview of the current understanding of compassion fatigue, burnout and vicarious traumatization within research literature and discusses the implications on the nurses who provide palliative and hematological/oncology care. The voices of nurses were obtained from an ongoing study, which focuses on the consequences of caring work among hematology/blood and marrow transplant (H/BMT) nurses have been used to highlight the discussion. Recommendations for future work on the psychosocial health and wellbeing of nurses working with palliative and hematological 23

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cancer patients and families have also been provided.

Palliative Care, Hematological Cancer Nursing and Caring Work The Palliative care movement appeared in the United Kingdom in the mid 1960’s in an effort to provide care for the dying.[4] As a practice discipline, palliative care has its roots in care and caring and is aimed at the prevention and relief of suffering, while physically, psychosocially and spiritually enhancing the quality of life.[5] Palliative care has continued to evolve beyond end-of-life care to encompass all aspects of the disease continuum from illness to bereavement so that “patients and families can realize their full potential to live even when they are dying”.[6] Similarly, oncology nursing is a relatively recent subspecialty within nursing practice having emerged in the early 1970’s to fulfil the needs of cancer patients across the disease continuum.[7] As treatments became more complex, highly technical, aggressive and invasive, nursing care has evolved to fulfil the demand for additional clinical expertise, comprehensive knowledge base and critical technical competencies to support safe, quality care delivery across physical, psychological and spiritual domains.[8] One example of the further refinement of oncology nursing practice is the H/BMT nurse. This subspecialty focuses on caring for a range of hematological cancer patients whether receiving active treatment or end-of-life care. As a component of palliative and H/BMT nursing care, caring work is included in the relationships between nurses, patients and their families encompassing the “mental, emotional and physical effects involved in looking after, responding to and supporting others”.[9] This relationship requires the nurse to be fully “present” along with and for the patient and family. Within the relationship, a space is created for the patient and family to give voice to their experience(s). The sharing of the illness narrative or story involves mutual understanding and reciprocation facilitating the cocreation of reality and the meaning of life experiences for the patient and family’s.[10–12] However, what might happen when the ability to co-create meaning does not occur due to lack of resources, workload increase, or tensions between the philosophical beliefs of the nursing discipline, the nurse’s beliefs and values 24

and the overarching philosophy and beliefs of the healthcare system within which the nurses practice? What may happen when repeated listening to stories of pain and suffering becomes overwhelming for the nurse? Nurses working in palliative or H/BMT care units not only provide technical care (e.g., pain management) but also provide care for complex, critically ill patients and their families. When caring work is performed in a work environment that responds to increasing expenses that are largely influenced by changing demographics and social profiles,[13,14] the overall health and wellbeing of these professionals may be compromised, and they may experience increased stress and burden. Further, professional and emotional stress may result due to repeated exposure to pain and suffering, failed attempts to alleviate that suffering, repeated deaths, distress and existential questioning of patients and families[15–21] and/or moral and ethical distress that may arise within the paradigmatic conflict of cure vs. care.[22–26] If the stress continues unabated, nurses may become vulnerable to adverse psychological effects such as those reflected in compassion fatigue, burnout and/or vicarious traumatization.

Adverse Consequences of Caring Work Numerous theories have been put forward to explain the result of caring work, but little agreement exists about the nature of adverse consequences of care/ caring work for nurses regardless of the practice area. Some researchers argue that nurses are experiencing burnout;[2,15,19,21,27] others claim that nurses may be experiencing compassion fatigue,[19,29,30] while still others suggest vicarious traumatization.[31] Trauma research suggests that interpersonal relationships, particularly the concept of empathy and emotional energy, which is considered a fundamental element of the patient-professional relationship may play a key role in the development of compassion fatigue[32–34] or vicarious traumatization.[35,36] In providing assistance to individuals experiencing pain, suffering or trauma, the professional may experience adverse effects similar to that of their clients[37] often resulting in individuals reassessing their reality and creating a new reality based upon what they have been exposed to.[38] Conversely, research on work life Indian J Palliative Care | June 2008 | Vol. 14 | Issue 1

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and the work environment has demonstrated that the relationship may not play a central role in the onset of burnout.[39–42]

Compassion Fatigue (Secondary Traumatic Stress) Compassion fatigue (originally referred to as secondary traumatic stress) has been described as the “natural consequent behaviours and emotions resulting from knowing about a traumatizing event experienced by a significant other—the stress resulting from helping or wanting to help a traumatized or suffering person”.[1] Further clarification highlights compassion fatigue as “a state of tensions and preoccupation with the individual or cumulative trauma of clients as manifested in one or more ways: re-experiencing the traumatic events, avoidance/numbing or reminders of the traumatic event, persistent arousal and/ or combined with the added effects of cumulative stress (burnout)”.[32] The phenomenon appears to be connected to the therapeutic relationship between the healthcare professional (in this case nurse) and patient. The experience of the patient triggers multiple responses in the nurse. Factors such as poor collaborative work environments, lack of social support and spill-over between work and home roles (e.g., double duty caring) as well as societal (political and economic) and organizational (work culture, work experience, training and role orientation) factors may be associated with an increased risk; however, further studies are required to elucidate the risk factors.

Burnout Burnout takes into account the interpersonal context of caring work, that is, the relationship between the care provider and the recipient of care or between service sector employees and customers; it is principally the understanding of the underlying motives and values of the care provider concerning their work.[43] It is most commonly defined as “a syndrome of emotional exhaustion, depersonalization and reduced personal accomplishment that can occur in individuals who do “people work”.[44] Initially conceptualized to reflect the effect of “people work”, burnout has been expanded to include all occupational groups.[41] Indian J Palliative Care | June 2008 | Vol. 14 | Issue 1

Research has now demonstrated that the relationship between the care provider and the recipient of care are not required to play a central role in the onset of burnout. The workplace or organizational environment may play a significant role in the development of stress. The most probable theory to explain the role of organizational context argues that burnout may result from a person-job mismatch encompassing six areas of concern: work overload, lack of control, lack of reward, lack of community, lack of fairness and value conflict.[39–42] Control serves a pivotal role in this explication of burnout, thus influencing the impact of workload, reward, community and fairness on the overall wellbeing of individuals.[40]

Vicarious Traumatization Vicarious traumatization refers to the “negative transformation in the therapist’s (or other trauma worker’s) inner experience resulting from empathic engagement with clients’ trauma material”.[45] Researchers suggest that continuous exposure to graphic accounts of human cruelty, trauma and suffering, as well as the healing work between the patient-therapist relationship facilitated through “empathic openness” may leave the therapist open to emotional and spiritual consequences. A number of factors have been identified as potentially contributing to the onset of vicarious traumatization. These factors include the following: (i) individual characteristics such as previous personal trauma, coping strategies and unrealistic self-expectations;[45,46] (ii) social and community context;[45–47] (iii) physical, organizational, structural and contextual work environment;[45,46] and (iv) work-related attitudes such as the need to fulfill all the needs of the clients.[45–47] By definition, the effects of vicarious traumatization resemble those of post-traumatic stress disorder such as feelings of horror, fear and helplessness. [48] Similar to the trauma sufferer, the nurse’s sense of self is disrupted and permanently altered. The resultant effects include “significant disruption of an individual’s sense of meaning, connection, identity and world view, as well as that of an individual’s tolerance, psychological needs, beliefs about self and others, interpersonal relationships and sensory 25

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memory, including imagination”.[46] Although few studies have investigated this phenomenon and its associated symptoms with regard to nurses, beyond a few doctoral dissertations, it would be reasonable to suggest that nurses providing continuous care for patients experiencing pain and suffering as a result of highly aggressive and/or life-threatening treatment or who are dying, may experience similar effects particularly if caring work is delivered in a work environment that is incongruent with the philosophy of nursing. Nurses may experience intrusive imagery, alterations in the ability to trust, loss of independence, decreased capacity for intimacy and loss of control[45,46] as well as increased arousal (anxiety, unexplained anger and irritability).[48] Considering an occupational hazard of working with traumatized people, the effects are argued to be cumulative and permanent, and these may overlap both the personal and professional life of an individual.[35,45,46,49]

Implications for Nurses Providing Palliative and Hematology/Blood and Marrow Transplant Care I sometimes wonder if my patients notice the tears welling in the corner of my eyes. When it happens, I frantically try to think of something neutral, bite my lip and look around. It is especially difficult, this day with WG. Naturally, I probably steer the conversation to an end for my sake instead of allowing her to do it. This is just another injustice that these patients face. (*Holly, 2007, H/BMT nurse) Helping relationships by their very nature are emotionally charged and can carry a heavy psychological burden.[50] Increased workloads, client acuity and complexity and ongoing contact with patients who are suffering can increase the interpersonal demands made on nurses. Emotional overload may occur when the abovementioned conditions are combined with a lack of support (professional and social), experience and skill. As a coping strategy, the nurse may become detached, a coping strategy reinforced by the medico-centric philosophy of the healthcare system and socio-cultural norms. This gives rise to a paradoxical situation wherein the palliative or H/BMT nurse struggles to maintain a balance between providing care to and caring for the patient, 26

between balancing the potential benefits and harms of treatment provided, between quantity as opposed to the quality of life.[25] If left unresolved, the conflict may lead to the nurse perceiving his/her patients as objects, dehumanized rather than as unique embodied beings. Over time, the nurse’s sense of adequacy, effectiveness, competency and sense of accomplishment may deteriorate, resulting in burnout[51] or compassion fatigue.[52] We conversed a lot in that session, about her fears and reality, her family and their way of coping. She opened up to me and I felt heroic, except that this sense of connection was overwhelmed by the breach of task-oriented nursing that so often becomes reality; I had allowed myself to imagine that WG as my own mother. The thought of her suffering silently as this woman does, was becoming too much for me. I acknowledge to myself why it is so painless for us as nurses to focus on low blood pressure, increased liver function levels, fluid status and lung sounds; this is because imagining ourselves or our loved ones as a patient is too scary to fathom. (*Holly, 2007, H/BMT nurse) For a hematological cancer patient, the high-tech, invasive and aggressive transplant treatment may occur within a medico-centric subculture of “cure”,[24] described as “the most devastating treatment that the human body can be subjected to”.[25] Nurses may find themselves evaluating not only their personal values and beliefs but the philosophical beliefs of their profession. Difficulties may arise when the nurse finds his/her self unable to reconcile the ongoing sufferings and poor outcomes with aggressive and often futile treatment. … I found that caring for him was a personal challenge for me since we were of the same age and he was left to take vital decisions regarding his care. He remained in the hospital for several months due to bad graft vs. host disease. I often felt guilty about caring for him since I did not find it fair that I could go home at the end of the day and he was facing this horrible illness all alone. While he was dealing with GVHD he underwent several studies/trials, and I often felt that caring for him was difficult. I guess, in a way, that as his nurse in this area I knew that his prognosis was very poor and I was aware that the medications were making his condition even worse. I felt I could not properly balance my feelings with Indian J Palliative Care | June 2008 | Vol. 14 | Issue 1

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his determination to undertake any promising study. (*Cheryl, 2007, H/BMT nurse) Further, when nurses are caught in a system that values cure over care, the transition to palliative care may be perceived as “giving up”.[25,26] Alternatively, nurses may feel ill-prepared to fulfil the needs of patients in the end-of-life care. It feels like we are giving up on them but actually we are not. The only problem is that we are unable to do any more for them if they are terminal; this makes me eager to want to help them but I do not know what else I can do. I basically provide comfort care and do everything I can to help them prepare, maybe make them more comfortable instead of carrying out the active treatments. [Our floor] is not a palliative care ward so I feel that we as nurses are not adequately trained to provide that kind of care, e.g., we work in an active treatment ward so we only treat the patients, but I feel that we are still lacking in caring for palliative patients. (*Carrie, 2007, H/BMT nurse) Having to witness dying patients who continue to receive invasive therapy that significantly compromises the quality of life or to assume the dual role of offering hope of a cure to some patients, while coping with others facing end-of-life may result in the nurses experiencing increased stress, powerlessness, helplessness and hopelessness.[15,20,25,27,28,53] …a patient is young and is dying, and has her children in the room; you have to then leave that room and go into another room and maybe they are enjoying themselves; so you move from one situation to another (*Patricia, 2007, H/BMT nurse)

Future Considerations In light of studies that have identified caring work to be the source of considerable stress on the psychosocial health of nurses providing care to cancer patients.[15,16,19,20,28] It becomes necessary to not only articulate the form stress may take but also how stress may differ (if at all) among the various subspecialties within the nursing practice such as H/BMT and palliative care. To date, few studies have investigated the implications of caring work on these two groups of nurses. Does providing care/caring for patients facing life-threatening illness or who are dying increase the Indian J Palliative Care | June 2008 | Vol. 14 | Issue 1

susceptibility or vulnerability of an individual to adverse psychosocial consequences? Additionally, the lack of theoretical clarity surrounding compassion fatigue and vicarious traumatization, particularly since they are associated with nursing practice, suggests a need to examine not only the type of stress experienced by nurses but the mechanisms underlying its onset. Finally, since not all nurses experience adverse consequences, there is a need to explore the role of moderating factors such as resilience and compassion satisfaction on the overall health and wellbeing of nurses providing palliative care and H/ BMT to patients. Without a clear understanding of the underlying mechanisms and theories and what the nurses identify and consider as their experience, interventions to address any adverse consequences may prove to be unsuccessful or nonsustainable. *Names have been changed to ensure anonymity and confidentiality Acknowledgment of the Funding Support for Research: International Society of Nurses in Cancer Care Nova Scotia Health Research Foundation Dalhousie University School of Nursing R and D Fund

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Conflict of interest: None declared

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