Self-Care: The Foundation of Care Giving

Relationship to Self

“How can you do this job?” “How can you bear the pain of children who are seriously ill… children who die… parents who grieve?” “Isn't your life deeply affected, or are you used to death?” Such questions, often asked by colleagues, friends, patients, and their families, have no easy answer. These questions invite caregivers to turn their gazes inward and reflect both upon the process by which they cope with the life-threatening illness or death of a child, as well as with their own mortality. In reality, they never get used to or become immune to the suffering of children, adolescents, and families that dream of a future yet live with uncertainty and in the shadow of loss. Nevertheless, caregivers often do get used to the sight, the touch, the sounds, or smells of the child's frail body that may or may not survive the ravages of a life-threatening illness. With growing experience, caregivers learn to anticipate the disease trajectory and recognize the symptoms of remission or deterioration identify signs of anticipatory grief, facilitate its unfolding, and help families accept and eventually temper their suffering or transform it into opportunities for development and growth. Over time caregivers gain specialized knowledge that can be of use to those they accompany down a path many have never been down before, while at the same time caregivers recognize that they never know all there is to know about the inevitably unknowable journey of each particular child and family.

All of that is possible in the context of relationships that are personal. Personal relationships both make the job highly stressful but also deeply fulfilling, and determine the degree of satisfaction that families experience with regard to the care being offered to them. We have come to understand that the relationships developed with the parents of seriously ill children are often problematic, and professionals who are insensitive, unavailable, or impersonal in their approaches elicit parental dissatisfaction and increased distress. Parental satisfaction with care is directly related to the nature of the relationships held with the care providers. These relationships have a positive or negative impact upon how families experience the dying process and death of a child, and seem to affect their long-term adjustment to loss. These findings make self-reflective practice a necessary part of the job, and encourage caregivers to review the relationships developed as well as challenge some of the mistaken beliefs according to which specialized knowledge, refined skills, and clinical experience are thought to be enough to ensure quality of care. While knowledge, skills, and experience are undoubtedly critical, families of seriously ill children demand more than that and expect a personal, human, and caring relationship. The following example illustrates how quality of care extends beyond the provision of expert care, and encompasses the development of nurturing and meaningful relationships with children and parents.

In her account, Mrs. Lauver acknowledged that professionals in both intensive care units dealt with the physical aspects of her daughters' care with great competence and also had informed her and her husband about the imminence of death. Of note, however, is that Mrs. Lauver's satisfaction with regard to the care that each of her children and family received was directly related to the nature of the relationships with the care providers. The impact of what had transpired in those relationships was so profound that Maria's death was experienced as highly traumatic, while Stella's death was comforting, affecting the family's bereavement in distinct ways.

This example illustrates how quality of care is not limited to professional expertise but is greatly affected by what each caregiver, as individuals and as members of a professional team, bring into the relationships with children, adolescents, and parents. It is critical to better understand how caregivers' values, attitudes, and beliefs affect those served, and also to understand that they themselves are also affected by the challenges, uncertainties, hopes, and losses they experience.

A Relationship-Centered Approach to Care

Papadatou suggests that it is necessary to expand our view of the care of seriously ill children beyond the family-centered approach that limits focus to the needs, concerns, and preferences of young patients and their families. This broader outlook is possible if a relationship-centered approach is adopted. Such an approach illuminates the dynamics that develop in life-and-death situations among patients, family members, professionals, and teams, and considers the larger organizational and sociocultural contexts in which care is offered and received. It explores the reciprocal influence of patients, families, and professionals and sheds light upon their subjective experiences and interactions in the context of healthcare. In essence, the relationship-centered approach focuses on whatever transpires when the private and social worlds of a sick child or family interacts with the private and social worlds of care providers in a given work and social environment. To better understand the outcomes of such encounters, it is important to consider its basic components ( Fig. 18-1 ):

• 1.

  The subjective world of the child, adolescent, or parent understood in light of his or her personal and family history and sociocultural background.

• 2.

  The subjective world of the clinician understood in light of his or her personal, family and professional history and sociocultural background.

• 3.

  The culture of the team, organization, or service that offers services to children with a life-threatening illness and to their families.

• 4.

  The larger social, economic, and cultural context in which care is offered and received.

• 5.

  The intersubjective space that is formed when the child, adolescent, or parent meets and interacts with a clinician or team in a given work and sociocultural context; this space belongs to their unique relationship.

According to Stern, the intersubjective space is “the domain of feelings, thoughts, and knowledge that two (or more) people share about the nature of their current relationship” (p. 243). When the clinician and the patient or parent are open to each other, and to their respective worlds, then the intersubjective space is enlarged to include a rich partnership, a fruitful collaboration, and the co-creation of new narratives. It also includes opportunities for increased self-awareness, new learning, positive changes, and personal growth in the midst of uncertainty and hope. Such experiences render the process of care human, meaningful, and rewarding. By contrast, when both clinicians and family members enact prescribed roles and focus solely on what needs to be done, which is often accomplished in a ritualistic or detached manner—then the intersubjective space becomes limited in its capacity to offer opportunities for genuine connection. It is also limited for viewing reality in a new way, and for containing, tempering, and transforming suffering in meaningful ways while developing resilience in the midst of adversity and loss.

The relationship-centered approach does not limit its focus solely upon the identification of specific goals that aim to meet the physical, psychosocial, and spiritual needs of seriously ill children and of their families. It emphasizes the importance of developing a partnership in caring relationships that allow for needs to be met and goals accomplished. One of the challenges posed by the relationship-centered approach is the development of an increased awareness and understanding of the clinician's private worlds in the context of relationships that aim to be truly and genuinely caring and enriching.

The Private Worlds of Professionals

To engage in a process of self-exploration and self-understanding, caregivers must first recognize such commonly held mistaken beliefs as:

• Suffering affects only seriously ill children, adolescents, and the people who are significant in their life; professionals do not and should not experience suffering.

• Effective care is ensured through specialized skills, rational thinking, and objectivity; emotions are subjective and lead to biases and mistaken clinical judgments.

• Clinicians must adopt an attitude of detached concern that involves an intellectual interest, and concern and understanding of others, along with emotional detachment that aims to protect them from occupational hazards such as burnout and compassion fatigue.

These beliefs prevent clinicians from developing caring relationships in which they are fully present and aware of what unfolds in the intersubjective space that is shared between themselves and others. As caregivers, knowing oneself is equally important as knowing the child, the adolescent, or the family to whom services are provided. Such ‘self-knowledge’ should not be limited to cognitive understanding, but also includes the integration of information gathered from emotional responses, physical senses, and bodily reactions, all of which contribute to self-understanding. When caregivers accompany families through illness, dying, and bereavement they cannot promise a cure, a perfect death, or recovery from bereavement. All they can assure is a committed and authentic relationship in which they will strive to remain fully present and open to the child's and family's experiences, no matter how painful or distressing these may be. According to Papadatou such openness “permits us to meet the unknown in life, in others, or in ourselves without preconceived ideas or rigid theories and planned interventions. It allows us to welcome the unexpected without always trying to provide a logical explanation, and to work through the paradoxes that are inherent in life and death situations.… This process demands time, energy, and commitment. When we are consumed by the everyday and rush from one activity, task, or crisis to the next, we do not engage in a deep examination of our experiences and we restrict our capacity to provide effective care and to reap the rewards.”

Openness toward self, others, and life is the antithesis of detachment and goes against any attempt to identify a precise distance that is believed to be correct in clinician's relationships with children and their families. Such clinical detachment is touted as protecting us from the suffering, the unexpected, the unfamiliar, or the surprise that occurs in intimate relationships.

Openness is associated with vulnerability. Contrary to the view that vulnerability is a weakness in situations that are perceived as harmful to well-being, it is the ability to be vulnerable enough that enables caregivers to remain open and permeable to others, and to their shared relationships.

What does the experience of being vulnerable enough entail and how does it differ from the experience of being highly vulnerable or invulnerable? Differences are of a qualitative nature. When caregivers cannot differentiate which aspects of an experience belong to them and which to another person with whom they totally identify and develop an enmeshed relationship, they tend to experience self as being highly vulnerable and overwhelmed by care giving. By contrast, when caregivers are threatened or terrified by their increased vulnerability, they tend to hide fears and instead project an image of over-competence, power, and control over situations and relations that evoke anxiety or suffering in themselves. In striving to appear unaffected and invulnerable, caregivers build rigid boundaries and remain oblivious to the private worlds of children and parents, as well as to their own experiences. They limit their attention to a prescribed role and to defined functions that are performed with great efficacy in the pursuit of specific goals.

The experience of being vulnerable enough involves an openness and permeability that enables caregivers to develop a deeper understanding of others, contain suffering without being threatened by it, assist with the challenges of illness, and gives the flexibility to adjust to emerging needs. This same openness and permeability is also experienced in the relationship to self. Caregivers take the time to process experiences, attend to distress or pain, cope with personal issues that have remained unaddressed, and develop a deeper understanding of how caregivers affect and are being affected by encounters with children and their families. When caregivers acknowledge and befriend a suffering that is unavoidable in the face of death, they are more likely to maintain relationships that are authentic, personal, and meaningful to those whom they accompany as well as to themselves.

When caregivers remain open and vulnerable enough, they acknowledge the presence of death in all relationships and cope with its effects upon patients, families, teams, and themselves. Only then may they recognize its violent impact upon relationships which are threatened, broken, or severed forever, as well as its vitalizing force that motivates families to live more fully and confronts us with life's value and meaning.

When caregivers perceive their relationships to children and their families as emerging solely in pain and suffering, they tend to neglect the potential of deriving rewards from care giving, and of growing to value life and their existence into the world.