© Springer International Publishing Switzerland 2016Annah N. Abrams, Anna C. Muriel and Lori Wiener (eds.)Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care10.1007/978-3-319-21374-3_21
21. Self-Care and Sustainability for Pediatric Oncology Providers
School of Social Work, The University of Texas at Austin, 1925 San Jacinto Blvd, Mail Stop D3500, Austin, TX 78712, USA
School of Social Work, University of Minnesota, Peters Hall 105, 1404 Gortner Avenue St, Paul, MN 55108, USA
Self-Care for the Pediatric Oncology Practitioner
There are many reasons to celebrate the astonishing strides in pediatric cancer care in recent decades. Survival rates have increased, supportive and palliative approaches have relieved some of the burdens of cancer treatment, and financial relief assistance for families has been established through many programs and philanthropy. Yet some hard facts remain. Families present with a wide array of compelling, sometimes intractable psychosocial challenges and social disparities. Treatment requires many painful and burdensome medical interventions that result in suffering for children and their families even when cure is attained, and up to 20 % of children with a cancer diagnosis still die. It is inescapable that those who care for children with cancer and their families will witness a great deal of suffering. This poses a potential risk for pediatric providers. Psychosocial providers who care for children with cancer are vulnerable to emotional and psychological reactions including burnout, compassion fatigue, secondary traumatic stress, and vicarious trauma simply given the nature of the work (Rourke 2007; Robins et al. 2009; Pearlman and McKay 2008). Secondary traumatic stress is an “occupational hazard” for all practitioners working in pediatric oncology services (Beck 2011). There is limited information in the literature specifically about pediatric psychosocial oncology professionals; therefore, this chapter focuses on the existing literature in the following populations: adult and pediatric oncology professionals, pediatric palliative care professionals, and psychosocial professionals. Implications from existing studies will be drawn together to inform how we help pediatric psychosocial oncology professionals take care of themselves professionally.
Louise, a pediatric oncology social worker, has been in her job for 8 years. She begins her day with multidisciplinary patient care rounds where the 22 patients on the floor and the additional 25 patients who will be seen in clinic that day are discussed. With too many patients to discuss in great detail, the team identifies new diagnoses and patients who are having issues with either their medical course or psychosocial situation. Also children who are in deteriorating health, or entering the dying phase, are identified and reviewed. Usually, the focus during this meeting is the medical situation, next steps, and who on the team would do what that day. Louise learns that three patients she had followed over the past couple of years were being admitted for various reasons. Alice, 14 years old, has a suspected relapse of her osteosarcoma that had previously responded well to treatment. Her family had been there every step of the way and always said they were “fighters.” This would be a rough piece of news for them. Danny, a 7 year old with ALL, was being readmitted for a resistant infection. He had been receiving intensive antibiotic therapy, was very weak, and seemed to be “running out of gas.” Danny was severely immunocompromised and his infection placed him in a precarious situation. Louise knew his single mother was quite exhausted too. She made a mental note to check in with her. This mom had a tendency to become more depressed when Danny’s medical situation took a downturn. Fatima, a 17 year old with AML, was being admitted for a pre-bone marrow transplant (BMT) workup. A BMT was her best chance for cure, but Louise knew the team was very concerned due to her poor general health status. Her mother and father were originally from Senegal and were very unfamiliar with the road that lay ahead for them with transplant. There was also significant marital conflict that tended to get worse when they were under stress. They had many questions about medical insurance, transportation, and how they could afford to take off work to be at the hospital with Fatima. As she left the meeting, Louise was relieved to see it was only 10:30 am as she wanted to attend the 11:00 am memorial service for Billy, a 3-year-old boy and long-time patient, who had died the previous week from neuroblastoma.
Chronic Exposure to Stress
Practitioners who value the work that they do and who find meaning in their profession might not notice the slow and creeping effects of exposure to the suffering of patients and their families. Like the proverbial frog who adapts to gently boiling water until it becomes too hot and he boils to death, practitioners are in danger of becoming overwhelmed before they know it. The process of learning and performing an important role with skill leads to greater capacity. Over time, the experience of performing that role without respite becomes burdensome. What might at first seem emotionally overwhelming becomes something that one adjusts to and can sometimes become numb to. Avoidance, irritability, impatience, cynicism, and feelings of helplessness or hopelessness can arise (Dane and Chachkes 2001; van Dernoot Lipsky and Burk 2009). The constant exposure to the suffering and hardship of others erodes resilience in ways that are insidious and potentially damaging to the practitioner. The demands on pediatric oncology providers are high and often relentless; there are always more children being diagnosed, needing treatment, dying, or facing new challenges in survivorship. Practitioners in this field observe the struggles and pain first hand and for extended periods of time.
Serious, life-threatening illness is a traumatic event (Dane and Chachkes 2001). This is especially true when such illness occurs in childhood. Secondary traumatic stress can occur in those who are important to the survivor’s life: family, friends, community, and professional caregivers. Proximity to those experiencing trauma and those suffering puts practitioners at risk for the development of symptoms like those experienced in post-traumatic stress disorder. The only difference is that the exposure is indirect: it is not personally experienced; it is produced through the lens of another person’s experience. This pattern can confound one’s ability to notice or acknowledge developing secondary traumatic stress. It is easy to minimize concerns or feel confused by reactions when the precipitants are in fact unclear, indirect, and perhaps not even tied to a single event. The cumulative effect of these exposures is one of the major determinants in the development of secondary traumatic stress and related conditions.
Compassion Fatigue, Burnout, Secondary Traumatic Stress, and Compassion Satisfaction
Recent studies have shed light on the role that compassion fatigue, burnout, and vicarious trauma or secondary traumatic stress can play in the work lives of professionals who witness suffering and trauma. These concepts are sometimes conflicting and overlapping but can offer insights into work in stressful healthcare contexts (van Dernoot Lipsky and Burk 2009; Rossi et al. 2012). Additionally, these terms are commonly used interchangeably. While there is some overlap in the concepts of burnout, compassion fatigue, and secondary or vicarious trauma, they are best understood as distinct phenomena.
Burnout is a state of emotional, physical, and psychological exhaustion, coupled with a reduced sense of accomplishment that develops over time. Burnout is also associated with the experience of an unsupportive work environment, a reaction to high workloads, conflict with colleagues, and unresponsive administration among other factors (Ellwood et al. 2011). In contrast, vicarious trauma or secondary traumatic stress is the natural by-product of bearing witness to and empathetic engagement with those who suffer trauma. It is the cumulative effect of exposure to the suffering of others. This exposure leads to changes in worldview, psychological, spiritual, and physical well-being. Over time, these changes can become permanent. Secondary traumatic stress refers to the “cumulative, transformative effect” of working with those who are traumatized (Pearlman and McKay 2008). In secondary traumatic stress, the practitioner adapts to the suffering of others and in that process adjusts their identity, worldview, and engagement with others. The effects of secondary traumatic stress or vicarious stress can become permanent, altering the manner in which the practitioner engages and interprets the world (Rossi et al. 2012; Robins et al. 2009; Sinclair and Hamill 2007; Pearlman and McKay 2008).
Studies have shown that exposure to the pain and suffering of children is particularly provocative for caregivers. Researchers report that the most frequently reported triggers of compassion fatigue were seeing painful procedures done to children, too much sadness, and too many deaths of children suffering with chronic illness (Maytum et al. 2004; Figley 1995; Najjar et al. 2009). Pediatric oncology physicians also feel sadness related to patient deaths and may experience periods of crying, irritability, disrupted home lives, and a sense of personal loss (Granek et al. 2015). Clearly repeated exposure to childhood deaths poses risks to all practitioners in this field.
To avoid vicarious trauma and its effects, it is helpful to recognize that those who work closely with those who suffer are vulnerable to it. There are clear warning signs that have been identified. Being alert to these signs in one’s self and one’s colleagues can help practitioners identify and address the factors that contribute to vicarious trauma and also those factors that contribute to resilience in the context of work with children who have cancer.
Warning Signs of Secondary Trauma Exposure/Response
Adapted from L. van Dernoot Lipsky and C. Burk 2009
Sense of hopelessness
Inability to embrace complexity
Chronic exhaustion, physical ailments
Inability to listen, deliberate avoidance
Dissociative moments, intrusive thoughts
Sense of persecution
Anger and cynicism
Inability to empathize, numbing
Grandiosity: empathize, numbing thoughts
Secondary traumatic stress occurs through a number of interacting dynamics. There are aspects of the individual practitioner that may cause them to be more vulnerable (personality, prior history of trauma, boundary practices, and perceptions), aspects of the team (culture, conflict, mutuality of support, and other dynamics), as well as aspects of the organizational and administrative structure (supervision, adequate resources, responsiveness, manageable workloads, continuing education resources) that contribute to exacerbation or minimization of risks. Each of these dimensions requires consideration.
It is important to acknowledge the importance of compassion satisfaction, the reason many are drawn to and sustained in this work. The rewards from serving children and families in need and participating in an often dynamic and challenging team context are many. Studies have indicated that there is an inverse relationship between compassion satisfaction and compassion fatigue or secondary traumatic stress: the higher the degree of secondary traumatic stress, the lower the perceived compassion satisfaction. In order to sustain compassion satisfaction, it is important to acknowledge and attend to the risks and burdens of caring for others. This is not an “either/or” proposition but rather requires a “both/and” emphasis.
The Role of Empathy
Empathy in psychosocial oncology care can serve as both a risk and protective factor for secondary traumatic stress disorder. There is an essential paradox within the clinical relationship: empathy is crucial for the work and also potentially dangerous to providers (Crumpei and Dafinoiu 2011). It is essentially a double-edged sword. Empathic professionals have better results in outcomes and patient satisfaction. Emotional involvement could in fact put providers at higher risk of secondary traumatic stress (Figley 1995). It is important to note the difference between affective empathy (which increases risk) and cognitive empathy (which tends to be protective). Figley argues that those who feel and express empathy are at greater risk of secondary traumatic stress (Figley 1995). The development of awareness, reflective skills, and a cognitive frame for interactions with patients and families is essential for practitioner wellness.
A combination of investigative studies, practice reports, systematic reviews, and anecdotal reports points toward continuing education, professional and personal supports, organizational structures, interdisciplinary teamwork, mentoring, wellness sessions, retreats, each of which focuses on meaning and perspective, maintaining balance and self-management strategies as potential tools to prevent vicarious trauma and compassion fatigue in psychosocial oncology professionals (Aycock and Boyle 2009; Emanuel et al. 2011; Rohan and Bausch 2009; Zadeh et al. 2012).
In recent systematic reviews, studies have offered specific recommendations for preventing and ameliorating secondary traumatic stress among nurses and social workers.
Beck (2011) found seven studies that looked at secondary traumatic stress among nurses. The studies recommended continuing education about the vulnerability to and symptoms of secondary traumatic stress (Beck 2011; Ting et al. 2006) and peer support for nurses (Townsend and Campbell 2009). Rourke (2007) identified three tiers of strategies for preventing secondary traumatic stress and compassion fatigue in nurses: personal, professional, and organizational. Aycock and Boyle (2009) found interventions to manage compassion fatigue among nurses fell into three categories: on-site professional resources (EAP programs, staff counselor or mental health professionals, support groups, and employee wellness programs), educational programs, and specialized retreats. Other identified institutional supports included working in interdisciplinary teams, having mentorship, adequate staffing, memorial services, and monthly rounds like Schwartz Center Rounds (www.theschwartzcenter.org) to facilitate open reflection and enhance compassionate caregiving (Aycock and Boyle 2009). Flexible scheduling and time away from direct patient care responsibilities, undertaking activities like quality improvement projects, resource development and research, or writing projects have also been described as helpful (Rohan and Bausch 2009).
In a qualitative study of pediatric oncology social workers, the findings highlighted the importance of vigilant and purposeful self-care (Jones 2004). Examples included “Take care of yourself or you won’t be able to help anyone!”; “Be in touch with their (your patients) feelings and utilize supervision, every death is different and there is no correct way, no matter how effective you are, you can’t take away the pain;” and “Know when you need time for yourself, it is okay to cry with a family when appropriate…we are humans too.” (Jones 2004). The social worker participants spoke of creating a balance between work and home responsibilities and the importance of professional and personal supports. In this study, professional supports were mentioned much more frequently than personal supports. Professional supports include good relationships with colleagues: “I have excellent relationships with my colleagues in the social work profession as well as with other disciplines.” Formal mechanisms for support were also mentioned: “we started a monthly staff support time to talk about the work we do. I allow myself to process the loss and then let it go.” Focusing on personal relationships of all kinds was also very important. Forming strong personal relationships inside and outside of work can facilitate one’s self-care as well, “finding support through people close to me (family, friends, church)