Self-Care: The Foundation of Care Giving

Published on 09/04/2015 by admin

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18 Self-Care

The Foundation of Care Giving

Stephen Liben, Danai Papadatou

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.

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 ¹⁴ 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.^14,¹⁷

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.

What are some aspects of caregivers suffering?

In the healthcare professions, it is often believed that clinicians do not and should not suffer. However, at the same time, it is often recognized that caring for children who are going to die is filled with stressors or occupational hazards. Previous work has focused on the stressors clinicians encounter, such as exposure to childhood death, communication difficulties, team conflicts, lack of support, and work overload. Some of the responses have been associated to concepts such as burnout, while others to vicarious trauma and compassion fatigue. These conceptualizations describe aspects of professionals’ suffering when their ability to care is impaired. However, suffering does not always lead to impairment. The challenge is to distinguish when suffering is a normal, necessary, healthy, unavoidable aspect of the work that can lead to enrichment, and when suffering is unnecessary and indicative of increased anxiety, depression, or disillusionment that requires the help of a senior colleague, mentor, counselor, or psychotherapist. Distinctions between normal and necessary and unnecessary suffering are not always evident, and require both an in-depth knowledge and ongoing awareness of how they are affected by the nature of their work.

Suffering That Leads to Impairment

Suffering that leads to impairment may develop progressively, as in the case of burnout, while at other times may appear to occur suddenly when caregivers are exposed to highly traumatic situations, as in the case of compassion stress or compassion fatigue. Overwhelmed by care giving, clinicians remain limited in their capacities to care for children and families, and concurrently tend to needs for self care. Following is a brief description of some aspects of suffering that lead to impairment, including burnout, compassion stress, and compassion fatigue, which have been studied to great extent among healthcare professionals.

Burnout is a “state of physical, emotional, and mental exhaustion caused by long-term involvement in emotionally demanding situations.”¹⁸ Although described as a static state, burnout is more of a process that develops gradually, when:

• Workload is increased or highly stressful, such as the constant exposure to death,

• When caregivers feel powerless or unable to achieve goals,

• When required to display or suppress certain emotions on the job.

Burnout is worsened by not coping adequately with these emotional responses or taking the necessary time to process experiences, review goals, and recharge batteries by addressing the need for self care. Sometimes burnout stems from the long-term effects of caring for others, called caring burnout. At other times it is from becoming disillusioned and losing a sense of purpose and meaning in the care provided, called meaning burnout, either because the job becomes routine, boring or insignificant, or because caregivers doubt the value or effectiveness of the work.¹⁹ The key dimensions of burnout involve emotional exhaustion, a depersonalized approach toward patients and detachment from the job, and a sense of incompetence and lack of achievement.²⁰ Although the term burnout is used quite casually in the workplace, it is important to recognize that it is a severe psychological condition that is often associated with depressive symptoms, anxiety, and demoralization.

Other times, however, caregivers’ suffering occurs suddenly in situations that we experience as highly traumatic. Faced with the trauma of others, we experience compassion stress, which is defined as “the natural consequent behaviours and emotions… resulting from helping or wanting to help a traumatized or suffering person.”²¹ Figley argues that when caregivers are not satisfied with the help provided, and fail to reduce the suffering of traumatized people, caregivers experience secondary traumatic stress, compassion stress, which can develop into a secondary traumatic stress disorder that he named compassion fatigue. Symptoms of compassion fatigue are similar to symptoms of a post-traumatic stress disorder (PTSD) and can be grouped in three categories:

• Re-experiencing, that is having intrusive thoughts, feelings, nightmares, re-experiencing symptoms or physiological and psychological distress when exposed to reminders of work with the dying child or bereaved parents,

• Avoidance, that is avoiding thoughts, feelings, rooms, or circumstances that have been experienced as traumatic in our work with the family,

• Hyperarousal, that is irritability, hypervigilance, sleep problems, outbursts of anger or crying.

In reality, compassion fatigue is a disorder that requires professional help.

When caregivers are burned out or seriously traumatized by their involvement with families of seriously ill children and the exposure to dying and death, they experience disruptions in our world view, thinking the world is unjust, They also experience disruptions in the view of self, thinking “I’m powerless” or ”I’m incompetent” and in the meaning they attribute to life and existence. These inner transformations negatively affect caregivers’ well-being, as well as the nature of relationships with those they serve. Such pervasive suffering requires the help of a mental health professional.

Suffering That Is Unavoidable

Not all suffering is hazardous to caregivers’ well-being and to the quality of their work. Some of their distress to the pain and suffering of seriously ill or dying children, and grieving parents, is unavoidable (Fig. 18-2). Not infrequently it reflects a grieving process over losses that are experienced in acute or chronic life-and-death situations.²²^–²⁶ Papadatou¹⁴ offers a model that describes the healthy, unavoidable grieving process triggered by an event or situations that are perceived as losses. For example, some clinicians experience as loss the death of a child and grieve over a special bond that has been severed forever; others experience as loss the non-realization of professional goals to cure a child; still others grieve over personal loss that surfaces with exposure to a child’s death. Most often such losses trigger a grieving process that presents unique characteristics. It involves an ongoing fluctuation between experiencing grief responses, and avoiding or repressing them. This fluctuation enables clinicians to acknowledge their losses but also set them aside in order to function appropriately without being overwhelmed. Moving in and out from grief helps to attribute meaning to their experiences with regard to the dying process and death of a patient, as well as to their roles and contributions in the care of families of seriously ill children.

Fig. 18-2 Grief.

Illustration by Danai Papadatou.

By contrast, the lack of fluctuation between experiencing and avoiding loss and grief may lead to manifestations of grief overload and complications that compromise the quality of services caregivers provide and may leave them to feel overwhelmed.

There are times when caregivers’ suffering seems more intense or pervasive; such intense feelings may be particularly invoked when work experiences resonate with unresolved personal issues. It is not uncommon to feel overwhelmed by the care of an adolescent patient who reminds a caregiver of an adolescent at home, or to avoid a family who is faced with decisions regarding end-of-life care, when the caregivers are confronted with similar dilemmas and decisions in the care of a dying parent. When work experiences invade personal lives or when personal experiences invade work lives, caregivers need to seek supervision or mentoring that can help set boundaries, explore suffering and seek helpful ways to mitigate it by addressing their own needs.

The progressive understanding of caregivers’ private worlds has several benefits. First, it makes them aware that they are not immune to suffering; expertise in this field of work does not guarantee immunity to pain, uncertainty, loss, and death. Second, it normalizes several of their responses and sensitizes them to some aspects of suffering that impair the provision of care and negatively affect their mental health. Third, it motivates caregivers to develop coping patterns that can help them accept their suffering, ease its distressing effects, transform it in creative ways, and seek help when suffering is unbearable. Fourth, it uncovers vulnerability in the face of death and confronts caregivers with their limitations, as a result of which they may become more humble in their approach. Fifth, it offers opportunities to examine expressed or latent motives for assisting families in life-and-death situations and to address caregivers’ anxieties and review their coping patterns in the face of loss and suffering. Finally, it incites caregivers to develop resources that enhance their resilience in adversity. Wisdom and growth can stem from accepting both their strengths and limitations and from acknowledging the rewarding aspects of care giving in life-and-death situations.

What Are Some of the Rewards?

Rewarding experiences have several sources (Fig. 18-3). Sometimes they are associated with the outcomes of caregivers’ interventions, the achievement of a desired goal, the accomplishment a specific task, or the effective management of a challenging situation. While the ultimate goal in pediatric palliative care is to enhance the quality of life of seriously ill children and of their family members by attending to their physical, psychosocial, and spiritual needs, the criteria that define quality of life are often vague and subjective because they vary among patients and families. At times the goals that, according to one set of values enhance quality of life do not coincide with the priorities of families who strive for a cure, the prolongation of life even when its quality is seriously compromised, or hope for a miracle. Unfortunately, in pediatric palliative care, what families desire most, the cure of their child, cannot be provided. This explains why the rewards caregivers derive are most often associated with the process by which services are provided. They involve, for example, the establishment of caring relationships or bonds; an availability, presence, and compassion through the diagnosis, illness, or dying trajectory; the creativity and resourcefulness by which caregivers respond to needs; or the fruitful collaboration with co-workers in the pursuit of shared goals.

Fig. 18-3 Nurturing.

Illustration by Danai Papadatou.

Rewards are profound when caregivers find value and attribute meaning to a job that is well done and contributes to the fulfillment and growth of others, whose lives are positively affected. Caregivers derive meaning from assisting families in coping with major challenges and, despite their suffering, sometimes live peak experiences that function as a source of comfort after the child’s death. Such peak experiences are uncommon experiences that are experienced as intensely meaningful or highly significant and unforgettable and are usually associated with feelings of awe, wonder, connection, and love.²⁷

When caregivers value their services, they pass their knowledge and seek to affect others by sharing their experiences and wisdom. Caregivers experience what Yalom ²⁸ describes as ”rippling.” Through actions that are not aimed at fame, prestige, or self-elevation, but rather toward a social good, caregivers create multiple concentric circles of influence that effect, oftentimes without their conscious knowledge, the lives of others for years and generations.

To experience the rewards of care giving in pediatric palliative care, caregivers must first be willing to illuminate what Jellinek ²⁹ described as the “dark side” of caring for seriously ill children. That involves an acceptance of a suffering that is inevitable when life is threatened and caring bonds are severed by death. This demands a willingness to create the space and time to reflect over caregivers’ work experiences in order to better understand how they affect and are being affected by the children and parents served. It also requires that caregivers explore the meaning they attribute to their experiences, to personal issues that compromise the care provided, and to identify those resources that help them do a good enough job.

However, caregivers must keep in mind that this process is not solely an individual affair. Their suffering and rewarding experiences in pediatric palliative care are also affected by professional, social, and cultural variables. As long as the education of physicians and nurses reinforces a biomedical approach to care and socializes future clinicians to maintain a stoic and detached approach toward the suffering of others, then self-awareness and self-care will continue to be discarded as unimportant and remain exclusively a private affair. Moreover, sociocultural values and norms determine how clinicians are expected to cope with death, how they express and manage their grief, what meaning they attribute to patient loss, and what types of support, if any, are available to them. When Greek and Hong Kong pediatric nurses were compared with regard to their responses to the dying process and death of a child, it was found that all experienced a grieving process that remained largely disenfranchised because, in their social contexts, they were expected to be strong and brave in the face of death. However, nurses in these cultures had distinct ways of expressing and coping with their grief.³⁰ Greek nurses displayed their grief openly, cried more frequently, and supported each other within the confines of their unit, which valued and enhanced mutual support. By contrast, Hong Kong nurses were more private and tended to suppress their grief by resorting to practical duties and work responsibilities. Differences were also found when Greek nurses were compared to Greek physicians.³¹ The latter were more likely to perceive the death of a child as a failure to achieve their professional goals to cure the disease and to prevent death, and reported more avoidant strategies with regard to their grief.

Clinician Suffering and Self-Care

While some clinician suffering may seem inevitable, much unnecessary suffering is caused by specific maladaptive attitudes of the caregiver themselves. Fortunately, once recognized these maladaptive attitudes can be corrected and suffering lessened by practical actions such as mindful practice (Box 18-1). The second part of this chapter offers step-by-step examples of mindful practice skills;^32,³³ a set of practical, learnable life skills for self-care that serves to reduce or transform suffering in meaningful ways.

BOX 18-1 Suffering in Clinicians

By bearing witness to the suffering of others, clinicians involved in relationships with ill children and their families will themselves experience suffering.

Some aspects of living with grief and loss are unavoidable, and are healthy and adaptive, leading to an enriched relationship with children and their families. However, unnecessary and avoidable suffering occurs when there is either prolonged attachment to, or non-acceptance of, grief, loss, and other emotions that may contribute to clinicians becoming overwhelmed or depressed.

Clinicians can learn to reduce or transform the suffering caused by attachment or the non-acceptance of grief and loss. Moving from suffering toward acceptance is a process that leads to wholeness and healing.^38,³⁹

Reducing clinicians’ suffering may be achieved by cultivating specific practical actions, including finding a healthy balance between work-life and outside interests, seeking medical and psychological support when needed, and integrating mindfulness and mindful practice into daily life.

Awareness itself is not a thought, but is more a state of being fully in the present non-judgmentally. Rather than a thought, awareness is a lived experience. The difficulty in conveying mindful awareness lies in the limits of words and their ability to convey concepts better than ideas. Concepts need only words to be understood and communicated while ideas include a component that needs to be experienced if they are to be fully communicated.³⁴ For example while the concept of the physiology of taste can be communicated via words, that is the pathway from taste receptors in the tongue and the neurophysiology of neurotransmitters leading to the sensory cortex, the idea of what a piece of chocolate actually tastes like cannot be effectively communicated by words alone.

Awareness, while an individual experience, is cultivated through relating to others and to the world around us. Sometimes it occurs on its own, spontaneously, even if it is not necessarily recognized as awareness at the time it is happening. Such moments are often described as being out of time when, in the space that exists between thoughts and feelings, we exist within a field of pure awareness of moment to moment lived experience. In sports or while being fully engaged in any activity, this has been described as being in the flow. Being completely aware of the moment to moment experience that develops in the flow is an example of active awareness. Such a feeling is to be fully awake, receptive to what is. It is devoid of thought or judgment about how good, bad, or special the experience is.

Awareness is important because it increases insight into the personal feelings, biases, and experiences that each person brings into relationships including those with seriously ill children and their family members. It renders caregivers open to the experiences of others and to becoming attuned to their responses and needs in the present moment. Being aware means accepting that while clinicians may experience many things, including sorrow, loss, and anger, they are aware that these responses are happening and do not mistake these feelings as being either necessarily true or self-defining. When caregivers feel sorrow over the impending death of a child they cared for, they can meet the sadness with an awareness of feelings and an awareness of the need to let go of unrealistic goals. There is also understanding of the healing role yet to be played in the remaining, perhaps brief, life of the child, as well as the lives of family members. In recognizing personal sadness, we acknowledge that these are simply thoughts and feelings and that they will come and go like all thoughts and feelings eventually to dissipate and be replaced by others. Thus being aware moment to moment means being less attached to our thoughts and feelings and more ready to observe them in the moment as they flow one to another. While feeling sadness, caregivers are aware they are having feelings of sadness rather than seeing the sadness as who they are. Caregivers themselves are not sad, but rather are aware that they are experiencing sadness. Sadness is not them.

So if mindful practice depends on cultivating awareness, and awareness cannot be understood until it is experienced then tasting awareness is needed to know awareness. While there are different ways to be aware, and to be mindful, there are also specific practices or exercises that facilitate the experience of active awareness.

The following exercise relates to the awareness of the breath as an example of how to cultivate awareness. What you need for this five-minute exercise is a physical place where you will not be disturbed during the exercise. Read through the instructions in Box 18-2, then simply put the book down for a few minutes and try the exercise for yourself.

BOX 18-2 Five-Minute Seated Awareness Exercise

You might consider doing this exercise as an experiment in self-care. The following questions will help set the tone to enter into this exercise:

What do you have to lose in trying this exercise? What barriers, such as negative thoughts and pre-judgments, are you experiencing as you consider trying this exercise?

Can you give yourself permission to have nothing to do and nowhere to go for 5 minutes in your life to try this exercise? Are you able to dismiss any thoughts that come up during the 5-minute period that might stop you from completing it?

What are your expectations as you enter into this exercise? Can you enter into the exercise with as few expectations as possible?

1. In your seated position, in a chair or on a pillow on the floor, place yourself comfortably upright. Your back should be a few inches forward from the backrest so that you are supporting yourself. Your arms can be relaxed and supported on armrests, in front of you on your knees, or overlapping in front of you. Your eyes can be directed forward and slightly downward so that your gaze falls softly on a point two or three feet in front of you. If you feel comfortable you may allow your eyes to close at any point during this exercise.

2. Rock very gently back and forth in your seat a few times. Feel your body, feel your arms, your hands. Feel your weight being supported by the chair and the floor and the earth beneath you.

3. Sitting in this posture, awake and alert, take three deliberate deep, slow breaths. Allow your belly to expand fully on the inhale and relax completely on the exhale.

4. Allow your natural rhythm of breathing to unfold. When thoughts arise, just notice the thought. There is no need to control your thoughts, no need to judge them, just become aware of them as they come and go.

5. Settle your awareness into the breath. Focus your awareness on the different components of breathing, such as the feeling of the air going in and out of your nostrils and mouth; the feeling of your belly rising and falling. Notice the rhythm of breathing, that sometimes comes in short bursts and other times in slower waves. Avoid judging or trying to control the breath; just notice its character from moment to moment.

6. Become aware of the still point between inhalation and exhalation.

7. Allow your awareness to ride the waves of breathing as you inhale and exhale. If thoughts or emotions arise, then note them and let them go. Give yourself permission to not chase after thoughts of “I should,” “I need to,” and so on. No matter what the thought or emotion or feeling is, notice it and let it be. Notice how one thought is always followed by another.

8. If sensations arise such as an itch or a pain, notice them and experiment with not reaching out with your hand to alleviate them by scratching or rubbing. What happens to the sensation if you focus your awareness on the sensation rather than seeking to alleviate it? If you do scratch or shift position notice how another sensation often takes its place and continues the cycle of sensation-action. What happens if you choose to observe the sensation rather than seek to alleviate it? What thoughts arise during these sensations? Do you label them as good or bad, tolerable or intolerable?

9. If you get lost in thought, then notice that has occurred, let go of the thought and bring your awareness back to your breath. You may need to do this again and again even during only a 5-minute period. This process of beginning again and again and coming back to the breath is part of the process of awareness.

10. Sit like this for about 5 minutes. Many find it easier to focus on the breath with eyes closed but if you feel more comfortable with your eyes open, then do so.

When you are ready, gently open your eyes. Notice how you are feeling, right now, in this moment.

If you managed, even once in the 5-minute period, to feel the difference between you and your thoughts, then you were experiencing active awareness, even if it was frustrating and if many thoughts kept intruding one after the other. It is your attention to whatever is going on inside and outside you that matters.

Reacting versus responding

Paying attention purposefully, moment to moment, is a simple concept to understand but for most is not easy in practice. Focusing attention on the breath is very challenging as it is difficult (at first) to not be carried away by a stream of thoughts that lead away from focusing on the sensations of breathing. Being mindful, even for a brief period of time such as during the previous exercise, is practice in breaking the old habit of mindless reactivity that fills most of our lives. When caregivers are immersed in the stream of their own thoughts and associated emotions, they experience the opposite of mindful attention. Such a state of inattention, of mindless immersion, does not allow for an examination of the quality of our inner experiences, such as physical sensations, thoughts, and emotions.

However, as in the example of the seated awareness exercise, caregivers can develop personal habits that help create a space between the unconscious automatic reactions, such as thoughts and feelings, and create a possibility of transforming them into conscious responses. Strengthening this new habit of being aware requires a commitment to change old habits of thinking and being, which have usually been the default mode. The reactive, mindless, automatic pilot mode of believing each thought, feeling, and reaction as true is not an easy one to break. Sustained practice encourages moment to moment non-judgmental awareness and acceptance of what is rather than how one wishes things were. Bringing an open awareness and attitude of acceptance to the bedside of ill people is not only good for clinicians, but also for their patients and colleagues. Such an attitude of acceptance of the way things actually are evolves over time as the byproduct of such a mindful awareness practice.

One common question that arises when beginning an awareness practice is how to differentiate acceptance of the way things are from passive acceptance and inaction. True acceptance of the way things are does not mean that everything is OK. Nevertheless, accepting the way things are is the first step to clearly identifying what needs to be done without resorting to automatic reacting. Reacting is an autopilot response to both the external and internal world. For example, when faced with a distressing situation, caregivers’ bodies may react with flushing, sweating, tachycardia, or a minor irritation may be fueled into anger with thoughts of past grievances. Becoming aware of these reactions, through regular awareness practice, gives caregivers the ability to re-examine their responses and decide whether they are helpful or not. If they are aware of their reactions, in the moment, they can choose to decide whether the reaction is based on limited information or triggered by past hurts or sleights, then open up the possibility for transforming the automatic reaction into a conscious response. Reactions that are evaluated upon then become responses that have been chosen.

While a regular practice of between 5 and 30 minutes a day is the mainstay of a regular mindful practice,³³ it is also possible to practice mini deliberate moments of active awareness throughout the day. Kearney and colleagues³⁵ have outlined awareness practices that can be incorporated into the caregivers’ workplace, some of which are included in the following list:

• Each day set aside a few moments at the very beginning of the day, while brushing your teeth or after parking your car, to remind yourself what your goal or desire is for your day and why you are doing the work. For example, you might say to yourself that you are entering into your day with the intention to do work that reduces the suffering of others and with attention to being aware of your thoughts, bodily sensations, and feelings as they emerge. Give yourself permission to fail many times during the day, indeed expect to forget your intention and attention several times, and then come back to your intention and attention whenever you can with warmth and gentleness toward yourself.

• As you walk from one place to the next during your day, pay attention to the sensation of contact between your feet and the ground. If you find yourself rushing while walking, see if you can give yourself permission to slow your pace and feel each step. When sitting, become aware of the feeling of the chair holding you up.

• When it comes to mind, pay attention to how you are breathing. If you are aware of physical tension take a deep slow breath letting your belly expand fully on the in breath. This can be particularly helpful during meetings when you are sitting for long periods of time.

• At set points during the day, such as before lunch or between patient visits, take three deliberate slow breaths and bring yourself back to the moment and whatever you are feeling and thinking at the time.

• When you complete a task, take a moment to reward yourself with a deep breath, a stretch, or a brief walk.

• After very emotional events, take some time, even just a few minutes, to re-center yourself before heading into the next task. This is best accomplished by physically removing yourself from the place the event occurred and finding some time and space to take a few breaths and come back to your sense of self in your body.

• Focus your attention on a visual or written cue that you find peaceful, such as a treasured oasis photograph, a brief poem or prayer that you find especially meaningful, or something in nature that you can see out the window. If you can see a tree or a bird, focus your vision and full attention on the nature object and rest in awareness of that object for a few moments.

• Before a meeting with colleagues, take a moment to center yourself with a breath and remind yourself of your intention to serve to reduce suffering and your attention to being aware of the flow of thoughts and feelings as they occur. Should you feel angry or bored, be aware of that feeling or thought, and instead of reacting you can decide how to respond. When taking the time to respond, you may find that no action is needed.

• How is your effectiveness changed when you fail to listen to your body? Becoming aware of your body more often opens the possibility for you to take better physical care of yourself. If hungry, then have a snack; when the need occurs go to the washroom.

• When washing your hands, use the time to be more aware of what you are doing, with active awareness. Can you feel the sensation of the water on your hands, the soap on your skin, the temperature of the water? Take a slow centering breath while drying your hands.

• See how often you can make connections with others throughout the day and observe how you feel when you do so. Make eye contact with colleagues and see if you can listen without thinking of the next thing you will say. When you greet other workers in the hospital, experiment with making eye contact and asking them something about themselves or their work. How does this affect the quality of your day?

• Try writing down your thoughts, feelings, and experiences in a notepad by your desk or at home at the end of the day (a narrative writing exercise). You may choose to share some of this writing with colleagues when the time feels right, perhaps during a debriefing session after a patient’s death (Box 18-3).