12 Witness to Suffering

The Clinician Experience

Barbara M. Sourkes, Stephen Liben, and Danai Papadatou

To provide optimal care to children living with life-threatening conditions and their families, clinicians in pediatric palliative care (PPC) must be prepared to enter into their world: coming face to face with the relentlessness of illness, the uncertainty of prognosis, and, at times, the inevitability of death. Clinicians are often asked: “How can you do that work? It must be so depressing.” In fact, depressing is one of the few things it isn’t. Rather, it can be fulfilling and rich, arduous and frustrating, sad, poignant, and, ultimately, profoundly moving.² Clinicians must possess—or develop—a high threshold for witnessing the anguish of threatened separation and loss, inextricably linked with the harsh ravages of disease. To witness is not a passive process.³ Every encounter offers clinicians the opportunity for a sense of connection and meaning that can, to some degree, counterbalance the suffering before their eyes and within themselves.

The core challenge for professionals in PPC who experience repeated cycles of attachment and loss is: “How do I preserve myself while, at the same time, sustain my ability to be an effective and empathic clinician?” This chapter examines relationship-centered care with a focus on the complex reciprocal influences among children, families, and clinicians. It describes the nature of clinicians’ suffering, including the impact of a child’s death. Building resilience and engaging in self-care are discussed as critical practices, both for the integration of clinicians’ own experience and for the provision of optimal care of children and their families (see Figure 12.1).

A Relationship-Centered Approach to Care

Papadatou⁴ suggests that it is necessary to expand our view of the care of seriously ill children beyond the family-centered approach, with its limited focus on the patient and family. A relationship-centered approach provides a broader perspective. It illuminates the dynamics that develop among patients, families, clinicians, and teams, and it considers the larger organizational and sociocultural context in which care is provided. It explores the reciprocal influence among patients, families, and clinicians and sheds light on their experiences and interactions. In essence, the relationship-centered approach focuses on whatever transpires when the private and social worlds of ill children and their families interact with the private and social worlds of clinicians. To better understand the outcomes of such encounters, it is important to consider its basic components.

The intersubjective space is defined as “the domain of feelings, thoughts, and knowledge that two (or more) people share about the nature of their current relationship.”^{5(p. 243)} When children, families, and clinicians are open to one another and to their respective worlds, then the intersubjective space enlarges to enable rich collaboration. It also offers opportunities for new learning, increased self-awareness, and growth in the midst of uncertainty. Such experiences render the process of care deeply meaningful. By contrast, when both clinicians and family members merely enact prescribed roles and focus solely on what needs to be done, then the intersubjective space narrows in its capacity to offer opportunities for genuine connection. It also limits the potential for viewing reality in new ways and for developing resilience in the midst of suffering and loss. Both perspectives are illustrated in the following family reflection.

To engage in a process of self exploration and understanding, clinicians must first recognize misconceptions such as

• Clinicians do not and should not experience suffering. Suffering affects only seriously ill children and the people who are significant in their lives.

• Effective care is ensured through objectivity and specialized skills. Emotions are subjective and lead to bias and impaired clinical judgment.

• An attitude of detached emotional concern that involves an intellectualized interest and concern for others protects clinicians from occupational hazards such as burnout.

These beliefs prevent clinicians from developing authentic relationships in which they are fully present and aware of what unfolds in the intersubjective space. “Knowing oneself” is of equal importance to “knowing” the child and the family. Such self-knowledge is not limited to cognitive understanding, but also includes the integration of information gathered from one’s emotional responses, physical senses, and bodily reactions. Openness is the antithesis of detachment and counteracts any attempt to identify a “correct” distance in clinical relationships. Remaining open to the child’s and family’s experiences, no matter how distressing, “permits us to meet the unknown in life, in others, or in ourselves. . . . This process requires time, energy, and commitment. When we are consumed by the everyday and rush from one activity . . . to the next, we do not engage in a deep examination of our experiences and we restrict our capacity to provide effective care.” p, 330 ⁴

“Being Vulnerable Enough”

“Being vulnerable enough”^4,6 is a strength that differs qualitatively from being either highly vulnerable or from projecting an image of invulnerability. When clinicians so overidentify with patients and families that they cannot differentiate their own experience, they develop enmeshed relationships in which they feel overwhelmed and thus highly vulnerable. In contrast, when clinicians feel threatened by the intense emotions engendered in work with seriously ill children, they may project an image of overcompetence and control to counteract their own anxiety. In striving to appear invulnerable, clinicians may build rigid boundaries and remain oblivious to the private worlds of children and parents, as well as to their own. Their focus narrows to their prescribed role and functions.

“Being vulnerable enough” involves an openness and permeability that enables clinicians to develop a deeper understanding of others, witness suffering without being threatened, and assist with the ongoing challenges of illness. It also involves clinicians’ recognition of how they affect—and are affected by—encounters with children and their families, as well as the impact on other team members and on the team as a whole. Furthermore, “being vulnerable enough” acknowledges the crucial importance of clinicians attending to their own distress and grief. In this mandala⁷ (Figure 12.3), a pediatric hospice nurse describes the richness of her commitment, her own suffering, and her reckoning with her own mortality:

It can be challenging to distinguish between normal, expected, and unavoidable suffering in clinicians who care for seriously ill children from the overwhelming suffering that is associated with anxiety, depression, and disillusionment. While the distinction is not always evident, the implications are important for clinicians’ own well-being and for their relationships with patients, families, and their team.

Common stress conditions which are associated with health and mental health problems are burnout and traumatization.^8,9,10 Suffering that leads to impairment in the provision of care may develop progressively, as in the case of burnout, or appear suddenly, as in traumatization. When clinicians suffer from burnout or are seriously traumatized by their involvement with seriously ill children and families, they may develop negative beliefs about themselves, their worldview, and the meaning of life. These inner transformations impact not only their own well-being, but also the nature of their relationships with those for whom they provide care.

Burnout

Burnout is “a state of physical, emotional, and mental exhaustion caused by long-term involvement in emotionally demanding situations.”¹¹ Although described as a static state, burnout is actually more of a process that unfolds over time. The key dimensions of burnout are^12,13:

• Emotional exhaustion: A sense of emotional depletion and lack of energy to meet professional demands.

• Depersonalization: A detached, negative, sometimes cynical response to children and families. Loss of interest and compassion leads to an impersonal quality in clinical relationships.

• Sense of professional incompetence and lack of achievement: Negative self-image leads to the belief that one can no longer work effectively; the professional may display indifference or apathy in his or her professional role.

• Reliving the traumatic event or narrative through intrusive thoughts and feelings, nightmares, and flashbacks. Reexperiencing symptoms of physiological and psychological distress when exposed to reminders (particular child, family, clinical situation) associated with the trauma.

• Avoidance of thoughts, feelings, settings, or circumstances that have been experienced as traumatic and bring back memories.

• Hypervigilance—always on guard for other trauma—leads to difficulty concentrating, disrupted sleep patterns, irritability, and being easily startled.

• Negative changes in cognition and mood.

Traumatic stress responses usually subside after few days or weeks, when self-care practices are adopted or the clinician is supported by colleagues who do not minimize the impact of the event. However, with the cumulative effect of repeated exposure to trauma, basic needs for secure self-esteem, feeling safe, in control, and trusting others are shaken, leading in turn to the avoidance of intimacy in both personal and professional relationships.¹⁴

When a clinician’s suffering from either burnout or traumatization becomes intense, prolonged, and pervasive, consultation with a mental health professional is indicated.

Suffering that Is Normal, Expected, and Unavoidable

We all have to learn to live with loss, but the person who works in this sphere must confront it every day.

Raphael^{15(p. 401)}

Not all suffering is hazardous to clinicians’ well-being or to the quality of their work. Some distress is normal and to be expected in PPC. Often it reflects a grieving process over losses that are anticipated and experienced in the clinical setting.^{16,17,18,19,20} It is critical to be aware of the power of anticipatory grief, defined as “grief expressed in advance when the loss is perceived as inevitable.”^{21(p. 4)} Experientially, the process reflects the emotional response to the pain of separation prior to the actuality of loss as it charts a “subterranean course” along the illness trajectory.^{22(p. 67)} Clinicians may not recognize anticipatory grief and thus can experience a sense of loneliness and confusion at the intensity of their emotion, not understanding its source.

While the death of a child represents the ultimate loss, there are many losses that may occur during the course of an illness. For example, when children with cancer first relapse and the possibility of “curing” the disease decreases, clinicians’ expectations and hope adjust accordingly. Or, in the case of children with neurologically deteriorative conditions, witnessing the loss of each milestone invokes a sense of helplessness and grief. In both these instances, the current loss portends the threat of death, however distant in the future.

A loss may mean different things at different times for different clinicians.⁴ For example, grief following the death of a child may be over a special bond that has been severed, or the inability to achieve the professional goal of cure, or over a personal loss that surfaces in the emotion of the present clinical situation. Most often such losses trigger a fluctuating process between experiencing the grief and avoiding or repressing it. This ebb and flow enables clinicians to both acknowledge their loss and set it aside in order to function. By contrast, a lack of such fluctuation may lead to manifestations of grief overload that can overwhelm clinicians and compromise the quality of care that they can provide.^6,4 Clinicians’ suffering may be more intense or pervasive when there is a confluence of professional experiences with personal issues or situations, especially those involving loss. At these times, collegial support, mentoring, or psychological intervention can help them to reset their boundaries and identify ways to mitigate their suffering as they continue in their professional practice.

Suffering may also be caused or intensified by interpersonal or systems issues in the professional setting. These may include team conflict, feeling powerless to effect change due to organizational structure or limited resources, and a work culture that values rules and task achievement over vision and creative accomplishment (see Chapter 11, “Team Relationships”).

Benefits to Clinicians of Understanding Their Private Worlds

• Reminds them that they are not immune to suffering; professional expertise does not guarantee immunity to pain, uncertainty, and loss.

• Offers opportunities to examine their reasons for caring for seriously ill children and families, recognize their limitations, and address personal anxieties in the face of suffering and loss.

• Motivates them to develop coping strategies to ease their distress, transform it in creative ways, and seek help when suffering is unbearable.

• Sensitizes them to aspects of suffering that may impair their provision of care.

• Incites them to ensure resources for themselves and their team that enhance resilience in the face of adversity.

The impact of a child’s death on clinicians of all disciplines is a relatively new focus, even in the palliative care world. Until recently, it was rarely addressed as an entity of its own; rather it was simply “taken for granted” as a difficult part of clinical work. Early initiatives to address this impact have been with trainees, recognizing the intensity of their interactions with children and families at such an early stage of their professional development. The paucity of training until recently is revealed in reflections written by residents.^23,24,25 Educational goals over the past two decades have focused on residents “gaining insight into the impact of death on their own emotions and the importance of addressing [them].”^{26(p. 278)} Identifying the kinds of deaths that residents find the most upsetting and factors that lead to their “positive” experiences in handling a child’s death have been explored.²⁷ Residents value didactic and experiential sessions, the support of their peers and attendings, and opportunities for debriefings and psychological support.^{23,28,29,30,31} The American Academy of Pediatrics (AAP) curriculum, Resilience in the Face of Grief and Loss,^32,33 developed for pediatric trainees, is actually relevant for pediatric clinicians of any discipline and at any level. The course was developed as a result of requests from the AAP Section on Medical Students, Residents, and Fellowship Trainees and the AAP Section on Hospice and Palliative Medicine.

Early studies with experienced clinicians examined cross-cultural perspectives on how the grief of nurses and physicians is expressed and supported.^34,35 For healthcare professionals in general,^36,37 the value of existing forms of support after a child’s death (e.g., peer, colleague, or family/friend support) as well as what more is needed (e.g., debriefings, immediate and easier access to a psychologist) have been described. Members of different disciplines may experience varying levels of intensity of grief, raising the question of what general as well as discipline-specific training and support is needed. Studies have also focused on specific clinician groups, including, for example, pediatric oncologists^38,39 and acute care cardiovascular nurses.⁴⁰ The impact of a patient’s death on both their personal and professional lives was considerable. Individuals’ history of illness and loss, level of professional experience, and the support of colleagues were among many factors associated with their coping.

Understanding the complexity of clinicians’ response to a child’s death in terms of what facilitates or impedes optimal coping and then designing supportive interventions for individuals within and across disciplines offer both clinical and research challenges (Figure 12.4A,B).

A Framework for Understanding the Impact of a Child’s Death

Am I going to die from this tumor?.

And can I ask you a personal question: Are you going to cry when I die?

Adolescent to her physician^{22(p. 74)}

The death of a child is the endpoint of an illness continuum that extends from the child who is seriously ill, to a child who is living under the threat of death, to a child who is dying. Thus, consideration of the impact of a child’s death on the individual clinician, as well as on the team as a whole, encompasses this spectrum in all its complexity. Caring for dying children and coping with the death of a child is an ongoing challenge for clinicians, both in personal and professional spheres.

For clinicians of any discipline who are new to a high-acuity pediatric setting, the death of a child often looms as a pivotal source of fear. At one level is the anxiety about what to do for the child and family in the immediacy of death. However, at a deeper level, they also wonder what to do for themselves to be able to cope in these circumstances. In clinical settings, it is not infrequent to hear statements such as: “I don’t know why this child’s death hit me so hard—more so than any of the others.” Or, “I feel guilty because I hardly reacted at all to this child’s death. I know it’s sad and I feel for the family—but I don’t have much emotion around it.”

The following framework (Table 12.1) was initially developed to provide trainees with a structure within which to make sense of their experience of the impact of a child’s death. It distills themes that emerged from small group sessions with pediatric residents and fellows, trainees from other disciplines, and staff at Lucile Packard Children’s Hospital Stanford over a two-decade period. It offers scaffolding for the issues to consider when working with seriously ill children or following a child’s death, whether in the immediate, short-, or long-term period thereafter. The underlying theme is that the focus, intensity, and quality of the impact of a child’s death on an individual is affected by many intertwined factors: situational (e.g., nature of death), deeply personal (e.g., loss history), relational (relationship with the child and family), and systemic/sociocultural (e.g., structure of rotations, culture of the team).

Related posts:

Quality in Pediatric Palliative Care Program Development The Language of Pediatric Palliative Care Relationships with Children and Ensuring Their Voices in Decision-Making Oncological Illnesses Children’s Voices: The Experience of Patients and Their Siblings

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