The other side of caring: Caregiver suffering

Caring for children with life-threatening conditions and their families can be a source of profound satisfaction, renewal, and affirmation. Sharing the journey with sick and dying children and their families is a privilege that only a few experience. For these caregivers, suffering for and with is an integral dimension of caring. By definition, to care is to suffer with, to share solidarity. Suffering for and with another person ignites our innate capacities for compassionate action. Caring for others signifies concern or interest in them as persons and in their well-being. It involves creating and sustaining relationships, emotional involvement, and a commitment to act on behalf of another; it connotes a strong sense of responsibility to attend to the holistic needs of another and, in the case of health care professionals, to provide needed services. Being with suffering can be transformative: the impetus for personal growth and social change (Halifax, 2008) and a source for the remarkable resiliency of the human spirit (Stamm, 2002). The act of caring for seriously ill and dying children demands empathy, sympathy, and compassion, three closely related responses. Empathy, the ability to feel and relate to the suffering of the other, invites mutual vulnerability and connection. It is the ability to perceive the experience of the other, to understand and convey one's validation and understanding of the other's experience without judgment (Sabo, 2006). In contrast, sympathy refers to a genuine feeling of concern for another's welfare or situation, conveying recognition or understanding of the circumstances or feelings ("I'm sorry for your loss"). Oriented toward the other rather than the self, sympathy may be impersonal or personal and invoke feelings of pity, sorrow, or anguish (Eisenberg, 2004). Although empathy and compassion are closely related, "compassion is the ability to be present to all levels of suffering, to experience it, and aspire or act to transform it without attachment to outcome or being overwhelmed by emotions or circumstances" (Rushton et al., 2009, p. 408). Compassion invites a quality of presence that conveys stability and resilience with a balanced concern and heartfelt connection but is not depleting or overwhelming to either person. It reflects the individual's character through a virtuous concern for the welfare of others and conveys an "inherent regard and respect" for another who shares a common human destiny (Sabo, 2006, p. 137). For the caregiver, each response has the potential to create meaning, satisfaction, and renewal. But there is another side of care and caring that must also be acknowledged: the potential cost of caring so much. Professionals who listen to and witness the pain and suffering of children and their families may themselves experience pain and suffering (Cadge and Catlin, 2006). Health care professionals may experience frustration and anguish as they observe children struggling against formidable odds and parents grappling with some of the most difficult decisions a family can ever confront. Children bear the consequences of disease, injury, and medical interventions in an often hectic health care environment. Professionals face demands that are at times unrelenting, accomplishing their tasks under high personal and professional tension. Ethical dilemmas grow as some children's lives end before their potential is reached, while other children's lives continue in time but not in quality. Caring for children and their families requires specialized knowledge and skill, sustained relationships, and courageous advocacy. In sum, it calls on tremendous physical, emotional, and spiritual energies from health care professionals. When demands exceed energies, integrity and self-worth can be threatened. Caregivers may begin to question the threshold of suffering they should be expected to endure. Clearly, when suffering becomes so great that it threatens the professional's sense of identity and integrity, it can no longer be justified (Rushton, 1992). Imbalanced sympathy and hypersensitivity to the emotions or suffering of others can lead to depletion and suffering (Cadge and Catlin, 2006; Halifax, 2008) and undermine compassionate action. Health care professionals are not expected to be martyrs or to sacrifice their own well-being to carry out their caregiving roles. Nor can they be expected to deliver good-quality care when their integrity is shattered. Family caregivers experience these same dynamics; the difference, of course, is that they are not in caregiving situations by choice and usually cannot, or would not, want to walk away. On a positive note, however, clinicians and family members embrace caregiving relationships because of the tremendous joy and satisfaction inherent in the role. As mentioned above, suffering and witnessing suffering can be transformative. Various descriptions of this process are available in the literature-posttraumatic growth, vicarious posttraumatic growth, healing connections (Boston and Mount, 2006; Kearney et al., 2009)-and are explored further in this chapter. When systems and processes are designed and maintained with proactive attention to boundaries and preservation of integrity, caregiving provides unparalleled opportunities to bear witness to suffering and assist in the transformation of that experience into sustained meaning for professionals and family members alike. This chapter opens by relating two contrasting clinical scenarios that raise very different issues for caregivers. We then define caregiver suffering and its sources, evaluate those sources, and examine responses and behaviors associated with suffering. In a final section, we offer strategies that may help health care professionals and family caregivers address their own suffering-and, by doing so, provide better care for their patients and their families. At present, little evidence-based information exists surrounding issues of caregiver suffering for children with life-threatening conditions and their families. As the field of pediatric palliative care continues to grow and salient research is conducted, the theories and practices delineated in this chapter may take on more or less relevance for our population; currently, however, we offer helpful perspectives for families and health care professionals to develop awareness. Mark, a 16-year-old high school junior, has a 4-year history of osteogenic sarcoma of the leg, which has recurred in several other locations. He is an attractive, gregarious adolescent who excels in everything he attempts. Each recurrence of the cancer has been treated with extensive surgical resection and multiple chemotherapeutic regimens. Most recently, the tumor recurred in his spine. It was surgically debulked; stabilization rods and radiation implants were inserted. After the initial treatment, he was referred for an autologous bone marrow transplant as the best option for possible cure. During the preparation phase, the tumor continued to enlarge, causing spinal cord compression that required aggressive surgical intervention. After Mark recovered from surgery, the bone marrow transplant was performed. Recurrent infections, medically managed kidney failure, and wound dehiscence have complicated the post-transplant period. Mark has become bedridden because of the weakness, the large back wound that requires frequent debridement, and constant diarrhea. He is often in pain, although he is receiving patient-controlled analgesia. Mark has always prided himself on his independence, meticulous appearance, and self-sufficiency. His new dependence on the nurses and his family for basic human needs is devastating for him. He often apologizes for needing to be cleaned up. The nurses caring for him empathize with his suffering and respond with compassion to the indignity of the disease and the assault of treatment on his self-image. They treat him with the utmost respect, physically and emotionally. They make every possible effort to restore his dignity by maintaining his privacy, allowing him choices, and honoring the coping mechanisms he uses to deal with the treatment and disease. They consistently advocate for better management of his pain and spend time with him, listening to his concerns while keeping silent to honor him. Anna, an 8-month-old infant who has human immunodeficiency virus (HIV), has been hospitalized repeatedly with a variety of HIV-related health problems, including opportunistic infections, recurrent fever and sepsis, thrombocytopenia, impaired myocardial function, chronic diarrhea, encephalopathy, failure to thrive, and developmental delay. Six weeks ago, she was admitted to the hospital with respiratory distress, poor oxygenation, and failure to thrive. Her respiratory compromise worsened, and she was electively intubated and mechanically ventilated. Her liver and spleen were greatly enlarged, and she had severely diminished myocardial function. Over the next week, she received maximal ventilatory support, but her lungs did not improve and she was unable to be weaned from the ventilator. She also had pain due to muscle aches, mouth sores, Candidiasis, hepatosplenomegaly, and frequent procedures. When Anna was 5 months old, her 19-year-old mother died of AIDS-related complications. Anna had been placed in foster care as a newborn because of her mother's age, history of drug abuse, and a positive drug screen at birth. Anna's grandmother was unable to care for her because of her own history of schizophrenia and child neglect. No other relatives were available to assume Anna's care, so she was placed in the care of a specially trained foster mother. As Anna's condition worsened, however, she needed to be admitted to a chronic care facility for children.