18 Self-Care

The Foundation of Care Giving

The best way to become a better “helper” is to become a better person. But one necessary aspect of becoming a better person is via helping other people. So one must and can do both simultaneously.¹

From the basic principles of human physiology, such as the heart first pumps blood to itself, to airline instructions in case of emergency, put your oxygen mask on first and then assist those around you, emerges the underlying principle of self-care. Without caring for oneself there can be no caring for others.

As clinicians come face to face with the inevitable suffering of a child’s dying and death, they have a choice, if not always consciously made, in how they approach their work. When they cope with suffering by seeing themselves as strong and giving to others who are perceived as weak, they are at high risk for burnout, becoming disillusioned and drained of energy. By contrast, if instead of helping the weak and vulnerable, they choose to offer themselves in service, then they assume a role of knowledgeable guide. As a knowledgeable guide they serve others with their whole selves that includes their particular strengths as well as vulnerabilities. Clinicians recognize the dark, the light, and the weak and strong aspects of their being and understand that are all needed in situations of intense suffering. They also recognize that despite their specialized knowledge in some areas, in most areas they share the sense of mystery experienced by those they serve. They can do only what they can, then they must let go of expectations that they can control outcomes that never were within our control. If they perceive their work as offering their whole selves in service, then the necessity to work on themselves becomes apparent. This self-work or self-care is both a requirement of their roles as well as a privilege they are being offered: to be allowed to become more themselves and to move toward their own potential as part of their daily jobs. As Robert Coles said, “I had begun to see how complicated this notion of service is, how it is a function of not only what we do but who we are (which of course, gives shape to what we do).”²

What do care givers have to offer families of children who live with a life-threatening illness? What more can they possibly do or say when all has been done in terms of pain and symptom control? How can each of the care givers be enough in the face of such suffering? They know that what children and parents value during these times is the abiding presence of a trusted person who listens and bears witness to their suffering, even better if that person has experience in being present in similar life-threatening situations, and has walked that path with others.^3,⁴ “All I want is what is in your mind and in your heart,” said dying patient David Tasma to Cicely Saunders, founder of the modern hospice movement. Tasma shared and supported her dream to develop a hospice. The quality of care is not limited to professional expertise but is greatly affected by what each clinician, as individuals and as members of a professional team, brings into relationships with children, adolescents, and parents. While bringing their imperfect selves to the service of others is necessary, it is not, however, sufficient. What is also required is that clinicians care for themselves in an ongoing reflective and systematic way.

The term self-care has been used in a variety of activities and in its most reductive sense is understood superficially as taking time for ourselves or taking a vacation. While it is important to balance work-life with other activities, the kind of self-care that leads to enduring personal resilience and growth requires more than time away because clinicians can never get away from themselves. In the words of Jon Kabat Zinn, “Wherever you go, there you are.”⁵ Self-care, when stripped of self-reflection, meaning making and paying attention in the present moment, becomes a self-centered exercise that is about I, Me, and Mine. Self-care activities based solely on distractions, such as vacations and other means to get away from work, can become selfish. If distractions and running away, including reliance on drugs and alcohol, are exclusively what self-care consists of, then inevitably there is never going to be enough time away. When the habit of running away from what is in the present moment becomes an established practice, then caregivers find that each distraction is good for a while but inevitably tolerance develops and no time away or distraction is ever enough. It is important to clarify that distraction, in and of itself, is not bad or unhealthy; and when entered into mindfully it is one of many strategies that can be helpful. Rather than being harmful, distraction, in the correct balance, is necessary but not enough to encompass the self-care needed in pediatric palliative care. While eating well, getting adequate sleep, regular medical care, physical exercise, having interests outside work, and making time for oneself are all important and necessary aspects of self-care, they are not sufficient. What follows in this chapter is a focus on the deep work of caring for the caregivers, which is essential when attending to the suffering of others.

The first part of this chapter outlines the relationship to self for professionals in the care of the seriously ill, caregivers’ suffering within the work and the possibilities of personal growth that comes with accepting things as they are. The second part of this chapter introduces self-reflective practice with specific exercises in awareness that clinicians may choose to experience.

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.^3,⁶^–¹³ 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.

Mrs. Lauver gave birth to Maria, and 2 years later to Stella. Both of her daughters were born with a rare, undiagnosed syndrome that resulted in serious retardation, neurological and motor problems, frequent seizures, and pulmonary infections. Each of them lived until age 9 and died in an intensive care unit as a result of their health complications. When the mother was asked to describe her experiences with the care her daughters had received, she chose to focus on their last hospitalization in two different intensive care units. With regard to Maria’s hospitalization in the first ICU she shared the following account:

“Her hospitalization lasted 10 days, and during those days, staff members did their duty. …The care she received, from the first physician to the last nurse, was very professional but what was missing was personal warmth and humanity. It was a physician who informed me that Maria’s condition was critical and that it was uncertain whether she would survive. The way he imparted this information was so cold, so distant.… Some doctors avoid giving time to parents and I fully understand it because they have to attend to several children besides our own. But, we, the parents who have children with major problems, have the right to clear explanations, to some compassion, to be treated as if we are their own people.

“The night Maria died, they told us that it would be a difficult night.… But we, the parents, always hope for a miracle…. What I remember is that when I squeezed her hand, she bit the breathing tube. When I saw the machines react, I hurt. I realized that she was aware I was there. I then left the ICU, and 10 minutes later she left [died]. The following day when her grandfather came to take her body from the morgue, he realized that the she had been removed from the ICU unwashed, uncombed, and with blood on her cheek that they did not even bother to wipe off after taking out the respirator. This infuriated me as well as her grandfather. They ought to take greater care of such things.”

In contrast to Maria’s death, Stella’s hospitalization in another ICU was experienced by Mrs. Lauver quite differently:

“Stella was admitted to another ICU and was hospitalized for 40 days due to her apneas. From the moment we were admitted to the moment she left [died], we experienced a tremendous difference in our relationships with the staff compared with our other daughter. The doctors outdid themselves; they were very human, warm, and made us feel as if we were their family. Yes, we were indeed their family. My child was also their child. There are no words to describe it. We just felt it. And to tell you the truth, Stella felt it too.… Although she was on a respirator, she felt the care, the concern, and the love that staff members expressed to her. I could see it in her face. She was content, happy…. In this unit, professionals had a place for her and for us. They were interested in my concerns, and discussed Stella’s condition and what would be in her best interest. We did not want her to suffer. They gave us some choices.… And they respected our decisions, and I am deeply grateful for that.

“I remember it was Sunday when the physician on call informed us that she presented arrhythmias and that, sadly, the end was close. Again, I did not want to believe it.… I sat next to her until the moment she died. I expressed the desire to hug her one last time, which was difficult because she was on the respirator. The staff removed the respirator to help me take her in my arms for one last hug (cries).

“The following morning when her grandfather went to pick her up [from the morgue], he saw a totally different child from the one he had encountered in the case of her sister Maria. It was obvious that they had treated Stella with total respect. She was clean and combed.… they had honored my child.”

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 ¹⁴ 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.¹⁵ 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.

Fig. 18-1 Sociocultural milieu, community, organizational context.

According to Stern,¹⁶ 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.