Faith, Hope, and Love: An Interdisciplinary Approach to Providing Spiritual Care

Published on 09/04/2015 by admin

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12 Faith, Hope, and Love

An Interdisciplinary Approach to Providing Spiritual Care

Janie Brooks, Reverend Kathleen Ennis-Durstine

I want to know if you will stand in the center of the fire with me and not shrink back.…

I want to know if you can sit with pain–mine or your own–without moving to hide it, or fade it, or fix it. I want to know if you can be with joy–mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful–be realistic–to remember the limitations of being human.

— Oriah Mountain Dreamer, Selections from “The Invitation”

Providing spiritual care to a person with a life-threatening illness involves standing, sitting, and dancing with that person through his or her unique experience. If we are careful, if we are realistic, if we recognize the limitations, then we can surely know joy.

The first half of this chapter is devoted to a review of the literature on the subject of faith and spirituality in children, especially children who are seriously ill, looking at faith, spirituality, and worldview, and examining the differences between screening and assessment. Much of what has been written begins from the perspective of data; while data is helpful to providing quality, interdisciplinary palliative care, it is not enough. The approach of this chapter places narrative and theology at the heart of the process and understanding. It will highlight the work of all the interdisciplinary team and examine the unique role of the professional chaplain.^* The second part of the chapter will look at various case scenarios and the many ways the interdisciplinary team can participate in faith and/or spiritual care of the pediatric palliative care patient.

For the purposes of this chapter, palliative care is defined as addressing both the physical and emotional and/or spiritual distress from the moment of diagnosis through death.

A review of the literature suggests that there is much work to be done in addressing the spiritual needs of pediatric palliative care patients. A survey conducted in 2008 by the Pew Forum on Religion and Public Life polled 36,000 Americans concerning their religious and spiritual beliefs. The results revealed that 92 percent of American adults believe in “God or a universal spirit.”¹ Although this poll was limited to American adults, the findings support the idea that spirituality is an inherently universal aspect of human beings. While the importance of spirituality seems to be of increasing concern, there are few articles on the subject and most identify significant challenges in providing spiritual care in a healthcare setting. Most articles on the topic are written by nursing professionals and are intended for nurses. There is little information regarding the role of the interdisciplinary team in meeting the spiritual needs of children, although a few writers emphasize the need for collaboration.²

Writers in the field agree that spirituality is important to children and that spiritual concerns are particularly significant during times of serious illness.³ It is recognized that the distinction between spirituality and religious belief is important yet often overlooked,⁴ and that developmentally appropriate assessment is necessary but there is a lack of validated tools in addition to some confusion about who is best equipped to make these assessments.⁵ It is also clear that nurses, physicians, and chaplains are aware that spiritual needs are not adequately addressed.⁶ Among the identified barriers to optimal spiritual care are inadequate staffing of pastoral care departments, lack of training on the part of clinical staff, discomfort due to lack of knowledge or skill, and priority being given to medical concerns at the expense of holistic care.⁷ The general conclusion is that addressing spiritual needs in the child with a life-threatening illness is “an area that deserves continued exploration and attention.”⁷

Spirituality and World View

Spirituality is often defined as pertaining to religious beliefs and values. This narrow understanding overlooks the reality that all human beings, religious or not, are spiritual beings. Spirituality must be described rather than defined, as it has to do with our search for meaning; it is a connection to something greater than ourselves that helps us to make sense of our world. This sense of sacred connection may denote a relationship with a divine Being such as God or Allah, or may be experienced in the context of family or community.

Spiritual needs change throughout our lives, according to our development and the circumstances we encounter. Our world view develops in relationship to our values, culture, tradition, and experience. As we grow and learn we are influenced by parents, faith communities, teachers, and peers, and what we see on television or learn from books and stories. These and many other factors contribute to our faith, our trust, and our hopes for how we will be in the world, for what will become our own life stories. Even very young children have a need to attach meaning to their lives and are working out their personal view of how the world works.

The diagnosis of a serious illness is a life changing event that not only interrupts ⁸ our day-to-day activities but may also disrupt our world view. Children who have been cared for by loving parents know the world as a safe place and trust that they can rely on their family to provide for their safety. The onset of a serious illness changes that understanding. The role of the parent shifts as doctors become the most powerful figures in the child’s life, and parents may now feel unable to protect their son or daughter from pain and discomfort.

A child growing up in a traditional Christian home may have been taught that God protects and loves us, especially when we obey God’s laws. Being hospitalized with a life-threatening illness can lead that child to blame herself for getting sick, or to doubt that God really exists at all. The same child might also discover that the God she has known all her life is present to her throughout her experience of illness in a powerful and reassuring way.

The African mother whose child is hospitalized in the United States may not have the opportunity to perform traditional cultural and religious practices that would bring her comfort and healing in her own community.

The teenager with a troubled home life who has already experienced the world as a difficult and confusing place may consider his serious illness a reinforcement: life is hard and not very hopeful, and he cannot expect things to get much better.

Spirituality is a very personal and complex part of our lives, and every seriously ill child and his or her family will undoubtedly have unique spiritual needs.

Michael’s mother was very preoccupied with chanting and praying in her son’s room. She had difficulty listening to medical team members when they came to update her about the daily plan of care, and was insistent that none of her extended family be allowed to visit Michael during his hospital stay. The chaplain, noticing that she did not seem to be experiencing any solace from her endless hours of praying, gently asked what she might do differently if she and Michael were back home. She began crying and admitted that she was carrying a heavy burden of guilt about a sin she had committed. She believed that God was punishing her by afflicting Michael with cancer. In Africa, she would have gone before her religious community and confessed her transgression, thereby receiving absolution from her priest and forgiveness from God. Having no access to this rite of penitence, she believed that God would not act on her behalf and there could be no miracle for Michael. Fearing judgment from her family, she isolated herself and her son from the support they needed.

If the interdisciplinary team is to address spiritual and cultural needs adequately, a thorough and thoughtful understanding of spiritual development and a quality spiritual assessment of the patient and family is critical.

The question of faith and/or spiritual development

The task of human beings is to grow and learn. Development is a given on many levels and, unless limited by neurological, biological, or psychosocial factors, will follow recognizable patterns. All development is influenced by the many cultures ⁹ in which an individual is embedded, perhaps none more so than the development of spiritual and/or faith concepts and needs. We cannot, with any certainty, describe specific faith development in children; we can only generalize about the ways faith development is related to human development. Each child, and each family system, must be understood as a unique entity. Exploring the cultures, which give each family its sense of meaning and purpose and upon which they will base much of their decision-making, is a vital process for the professional.

Developmental models are inclined to focus on stages. The human mind extrapolates that progress through these stages is success. Yet Erik Erikson, the progenitor of modern developmental theory (The Child and Society), cautioned his readers to be aware that all persons carry within themselves the potential future stages as well as the resources and unresolved issues of former stages. A person is never statically in one stage. Faith development, per James Fowler (Stages of Faith) is aligned with other psychosocial and biological development (Table 12-1). However, progress through faith-development stages does not tell us that a person’s faith is better, more developed, or better able to support them through crises. The development stage of one’s faith is influenced by culture and world view and frequently chosen because it assists the individual in making sense out of his or her life.

TABLE 12-1 Comparisons Among Human and Faith Development

There is a distinction between faith and spiritual development, although they significantly overlap. Faith development refers to the tenets of any particular group, how and when they are taught and/or experienced by the child within her or his cultural milieu. Spiritual development refers to the ways in which children make meaning, feel connected (or disconnected) to something unseen, but experienced, that gives them a sense of being cared for and the ability to care for others. This experienced awareness of the holy assists children in developing their capacity for trust, for gratitude, for remorse or sorrow, and for their vitality in participating in life. We should never mistake not belonging to a faith community that has a particular story and language for a lack of spirituality.

Have you been with a 10 month old whose eyes grow as big as saucers at the sight of his first Christmas tree? Or shared a moment with a 6 year old who, with tears in her eyes and a huge smile, holds a butterfly on the tip of her finger? Or cared for a 90 year old whose last request is to watch the sunrise? That is awe, and it is the beginning, middle, and end of spirituality.

As human beings, one of our first tasks is to trust and to explore who we are in relationship to those we trust. The child who goes to sleep in a crib, in a dark room, is not only expressing trust in his parent, but also communicating a basic trust in the creation. As we grow and become more discerning and articulate, we begin to choose what it is in which we will have faith. A child makes choices about how open or closed she is to the world around her, to others, and to various concepts and practices offered by her family and communities. Children then begin to notice that what they receive is not to be taken for granted; they are able to express gratitude and desire the gratefulness of others. As trust and relationship are confirmed in the events of a child’s life, the child experiences and articulates what loss means, what regret and sorrow are, and how she or he is connected to, and a participant in, what the child believes to be the expectations and promises of living.¹⁰

Where trust and communion, being cared for, and caring for others are disrupted, every other aspect of the child’s psychosocial and spiritual development is also disrupted. A life- threatening injury or illness calls into question the intent or reality of something other or holy that is watching over the child. Every other concept which the child has integrated into his or her personal identity to this point will undergo some re-examination. What was easy, and practiced without much thought, such as gratitude, becomes difficult and problematic. Depending upon the cultures of the child’s community, the child may become more focused on remorse or responsibility. Children often return to earlier stages of psychosocial coping when feeling exposed and unsure; this may or may not be true of children and their faith-based, or spiritual, perspectives. Erikson emphasized that development is process not progress, at least not entirely, and that each stage holds the following ones in potential and the past ones as resource and unresolved issues. There are children of all ages who need the more concrete, me-oriented concepts and ideals. However, there are other children of all ages for whom concepts or symbols become transparent,¹¹ the universe suddenly coherent, and vision transformed. Neither is better.

The work of faith, or spiritual, development happens along two fronts. One is the cultures in which the child is embedded, and the other includes all the experiences and relationships which the child internalizes as her or his own particular world view. It is never enough to know the tenets of a child’s cultural and/or faith environment, one must know the child (Table 12-1).

Faith and/or Spiritual Screening and Assessment

Since faith and spirituality have become important aspects in the awareness of healthcare providers, the words screening and assessment have been used in various and often synonymous ways. This chapter encourages a separation of these very specific concepts. Screening can be done by any one of the interdisciplinary team members to identify a patient’s and the family’s relationship to their faith community, the beliefs and practices that they would like to continue and to have respected by the healthcare team; and any special needs for food, space, and male or female caregivers. Screening may also identify the need for additional support structures or personnel such as the professional chaplain. Assessment, however, is a much more abstract concept. A faith or spiritual assessment is ideally about describing a sense of self in relationship to the holy, in whatever way that is understood, the ways of making meaning and making decisions, what people understand to be community, and how they access their strengths and resources. Results of an assessment are unique. Assessments should always be completed by trained, professional chaplains.

Healthcare professionals should complete an appropriate spiritual screening with the patient upon admission to the clinical setting. Based on that information, clinicians can identify the presence of a spiritual issue and make the appropriate referrals to chaplains who will complete more thorough spiritual assessments. Clinicians should distinguish when the patient presents with emotional, psychosocial, spiritual issues, or a combination, and make the appropriate referral.

This model is based on a generalist-specialist model of care in which board-certified chaplains are considered the trained spiritual care specialists. Detailed assessment and complex diagnosis and treatment are the purview of the board-certified chaplains working with the interdisciplinary team as the spiritual-care experts.¹²

In short, screening answers the question, “Are there religious or spiritual issues or needs for this patient or family?” Assessment by the professional chaplain addresses the questions, “What are the religious and spiritual needs of this patient and family? How do they impact the living, the relationships, and the decisions of this family system? What are appropriate interventions to assist this patient and family?”

Screening tools presently available

There are several competent screening tools. One of the most familiar is the Faith and Belief, Importance, Community, and Address in Care (FICA) tool developed by Christina Puchalski, director of the George Washington University Institute for Spirituality and Health. There are two forms of this tool, one for use as a self-assessment the other for use by physicians. The patient and physician apply the answers to these questions to assist them in their partnership of care:

• F: Do I/you have a belief that helps in coping? If not, what gives my/your life meaning?

• I: Is this important to me/you? Does it influence healthcare decisions?

• C: Do I/you have a community that is important? Should I/you do more with this community? If I/you do not belong to a community should I/you find one?

• A: What is my action plan; what do I need to change/develop?/ How would you like me to address these issues in your healthcare?

A second familiar screening is HOPE, developed by Gowri Anandarajah, Professor of family medicine (clinical) and residency director for the Brown Family Medicine Program at the Warren Alpert Medical School of Brown University, and Ellen Hight, of the Brown University School of Medicine. HOPE stands for:

• H: identify sources of hope, strength, comfort, meaning and peace

• O: organized religion’s role

• P: identifies personal spirituality and practices

• E: explores the effects on medical care and end-of-life decisions

The Spiritual Competency Resource Center has a lengthier Spiritual Assessment Interview that covers religious background and beliefs, six questions, spiritual meaning and values, two questions, and prayer experiences, three questions. (This interview technique was instituted by David Lukoff at The Institute of Transpersonal Psychology, Palo Alto, California.) These questions are primarily focused toward the quantifiable, but several yield more descriptive information such as “What have been important experiences about God/higher power? How has prayer worked in your life?”

Many professionals, chaplains, and other clinicians have attempted to create a succinct and effective assessment tool. Evidence, particularly in the field of pediatric care, is that these continue to rely heavily on data instead of narrative. This may be why there is no effective validated tool. Each individual’s story and needs are unique. The most effective assessment is the narrative. The questions are not “do you go to church, synagogue, or mosque, and how often?” but “Can you tell me what you like the best or least about going to church, synagogue, mosque, or other?” The more open-ended the inquiry, the more one can learn about those things in the life and experience of the patient, and the patient’s family, that assist them in making meaning, decisions, and assessing resources.

It is also important to emphasize that the most effective assessment is not a form or checklist that can be completed in one visit by the professional chaplain. If we take it seriously as narrative, then it requires being both told, and heard, over a period of time. The telling occurs in differing chapters to various members of the interdisciplinary team. As the patient and family tell the story of their faith and/or spirituality as it is rooted in their existence, they hear it again themselves as a defining aspect of their being and living. They may even uncover some facets of it which are no longer as vital, perhaps even troubling. As the interdisciplinary team member listens, he or she encourages the telling, demonstrates respect for the value system of the patient and his or her family, and skillfully learns more about how all of the interdisciplinary team may provide important services and support for the family.

The system of collecting a formal spiritual assessment or narrative that works best is the one which the professional chaplain on the interdisciplinary team uses most effectively. The process of spiritual and/or faith assessment is also just that, a process. While the child and family are receiving palliative care services, collecting the narrative is ongoing. This continues to be the most important role of the professional chaplain on the team. Unfortunately, care delivery systems frequently do not provide budgetary support for a full-time professional chaplain, and also frequently underestimate the services this person can provide not only to the patient and family, but also to the interdisciplinary team.

The chaplain on the interdisciplinary care team does not replace the religious clergy with whom a family has a personal relationship, but is one of the value-added personnel who assists the patient and the family and other staff determine what services are needed, when they are needed, and why.

There is another characteristic of the faith and/or spiritual assessment when the patient in palliative care is a child. In almost all other health care situations, patients are the primary decision-makers as long as they are competent to make informed decisions. This is not true for pediatric patients. Not only are children not their own primary decision makers, but also they, or their hopes, wishes, and concerns, may fall far down the family’s list of what is important. This refers not only to the child’s parents, but also to extended family members, and/or community members depending on the culture and/or ethnicity of the patient/family. Therefore, the effective faith and/or spiritual assessment is one that takes into account the entire family system.¹³ It weakens the effectiveness of the child’s narrative as a means to assist the child if we do not understand how other family members narratives may either subvert or overpower the child’s. As the team gathers the narratives, the chaplain, team members, and perhaps the family’s personal clergy, can evaluate where there may be power struggles in the family, whether keeping secrets may impact how the child understands his or her circumstances, and if this will affect the care being provided by the interdisciplinary team. Many other aspects of how the family functions, or does not function, may also be instrumental in planning appropriate care. Ideally, for work in pediatric palliative care, the professional chaplain should have some training in family systems theory across cultures, child, and spiritual development so that her or his evaluation is grounded and not merely guesswork. To provide this training could be an important commitment of a palliative care program.

Using the faith/spiritual assessment

As a member of the interdisciplinary team, the professional chaplain provides insight to other team members about the strengths, weaknesses, and values of the patient and the patient’s family that will assist them in coordinating care. One’s faith and/or spiritual perspective, which provides a context for making meaning, is of paramount influence to decision-making. It is the way by which persons assess risk versus benefit; it shapes the understanding of quality of life. All members of the interdisciplinary team can provide spiritual care.

Providing Spiritual Care: A Theological Concept

The word theology comes from the Greek theos, God, and logos, word—therefore, words about God. For our purpose we focus on God as the being, or the concept, which assists humans in making meaning of their lives, believing that there is purpose in life, and encourages relationship to others individually, and to community. For some children and their families God may be very real: present, experienced, and holy. For others, presence, experience of the holy, providence, and other theological concepts are found in the midst of human relationships and events. Both are spiritual.

Spiritual care is provided by every member of the interdisciplinary team according to his or her own expertise. Following are some descriptions of the spiritual needs of children, and their families, in palliative care. Case examples highlight interventions that can be offered by many members of the care team. There is an emphasis on the importance with which the care team should consistently involve, as an equal partner in planning, the board-certified professional chaplain who has been trained in pediatric care. This person can not only provide support and service to the child and family, but also will be an important guide for the care team in assessing and addressing spiritual care. Every member of the interdisciplinary team brings her or his own particular authority to the relationship. Typically, families want to hear medical details from the physician, concrete support and strategies from the social worker, and faith and/or spiritual perspectives from one trained and vested with the authority of the faith or spiritual community. The professional chaplain also may assist the family’s own clergy in assessing and providing care. We emphasize that a family’s relationship with their personal clergy is to be respected and supported. However, the community clergy is not a member of the interdisciplinary team. A community clergyperson may not be familiar with medical processes or language and may not be comfortable in the clinical environment; in addition, he or she is not authorized to access medical records.

The list of spiritual needs is extensive. Children and adults need to receive, and share with others, the gifts of faith, hope, and love that are the heart of spirituality. Faith describes the need for safety, protection, and trust, as well as the desire for an experience of the Holy. Hope brings the ability to dream, to wish, and to make meaning out of one’s life story. Love encompasses the relationships we cultivate, the value that we feel as unique individuals, and the legacy we leave with those whose lives we touch. The list includes, but is never limited to:

• Making meaning in the context of one’s own value and/or religious system,

• Experiencing the world as a safe place,

• The need for protection or to protect others,

• Legacy making,

• Need for others to bear witness,

• Finding a place in community,

• Reconciliation or making amends,

• The many forms of ritual,

• Presence or accompaniment

• Parenting,

• Sharing fear,

• Evidence of the Holy,

• Fulfilling wishes and hopes,

• Staying in the ambivalence.

The care team participates in all of these areas by interacting with the child and the family. In an extremely important way, the care team is the community for this child and his or her family. Children who are sick may have lost their sense that the world is a safe and caring place. Bearing witness to the unfairness of suffering is perhaps the single most important spiritual act that any caregiver can provide. All caregivers need to eliminate the phrase “I understand” from their vocabulary. Each one must know, for themselves, what they are willing and not willing to do. For instance, a caregiver may be uncomfortable with the family’s definition of miracle and their language of prayer. Admit it, but only to one’s self. However, take seriously how this is assisting the child or family in making sense of the senseless. The presence of the caregiver is vital. Presence is not merely showing up to perform tasks. It is being able and willing to learn about the values, needs, and feelings of this particular child and family. Sit down. Listen. Use touch gently and compassionately. Illness is isolating and a patient’s pain sometimes discourages family members from touching for fear of distressing the child. But being touched is a deep human need. Interdisciplinary care team members can model touching and/or holding, which decreases pain and anxiety. If caregivers communicate a willingness to stay, to be a compassionate and constant presence, they will have provided important spiritual care.

Children faced with serious illness have a need to express the powerful emotions that they may not be able to articulate. They also may not feel comfortable talking with their parents. In order to feel safe, children need to know that they are parented, that someone particular puts them first. If the parent is unable to care for the child because of his or her own distress, then the child will, at the least, experience fear. Yet children need to express what troubles them.

Sally,¹⁴ 14, expressed to a nurse; “I know I’m dying, but, please, don’t tell my mom, ‘cause she can’t handle it.” Sally and her mother never had a conversation about what Sally wanted for her death, although the case team attempted to facilitate it. Sally’s mother was intent on protecting her daughter; Sally was intent on protecting her mother. Sally, fortunately, was able to talk with one nurse and the social worker about her beliefs, her fears, and what she wanted for herself. Her mother excluded herself from that gift. However, the team respected Sally’s mother’s values, which was essential to her being able to cope. For patients who have difficulty talking about their feelings, art, music, and play therapy can provide powerful outlets for creative expression. Therapists and psychologists, in providing therapeutic interventions, become spiritual caregivers (Figs. 12-1 and 12-2).

Fig. 12-1 Tissue Paper Collage by a 12-year-old girl who was not able to talk with her mother about dying. Children’s National Medical Center (CNMC), Washington, DC.

Fig. 12-2 An example of a child’s will, this one belonging to a 7-year-old at Children’s National Medical Center (CNMC), Washington, DC.

Children want to know that their lives mattered. Constructing a legacy that expresses the child’s values can be aided by any member of the care team. Children may want to make a video of them reading their favorite story, talking about their favorite family experiences, sharing how they hope they will be remembered. Children may also want to make their own will, leaving their special treasures to the people who have been important to them. Perhaps instead of one video, the child makes his own movie involving everyone in the family. A child can also write letters to each family member to be delivered on the family member’s birthday, a special holiday, or the child’s birthday and/or the anniversary of his or her death day. Child-life specialists have particular training in making legacies, and can assist the family in working together to create memories.

The need to feel the presence of a power greater than ourselves, an experience of the Holy, is as important to a child as it is to an adult. Prayer, sacraments, and other familiar religious practices can provide reassurance and peace for many children. For concrete thinkers, a symbol or ritual may represent the presence of the Divine.

Amy, 12, had end-stage osteosarcoma and went home with hospice care. Before she left the hospital, the chaplain came and said prayers at Amy’s request, and anointed her with special oil. Amy asked if she could take the oil home with her. She knew that she was nearing death and had been asking many questions about the Christian tradition in which she had been raised. She also asked the chaplain, “How do I believe in God?” The chaplain told Amy that she didn’t have to work at believing because faith was a gift she already had been given. A few days later the chaplain spoke to Amy by telephone. ”Can you send me some more of that oil?” Amy asked. ”When I rub it on my leg, it makes the pain go away. I know that God is with me. … I do believe!” For Amy, the ritual of anointing herself with oil and experiencing a relief from her pain was the evidence that she needed to realize God’s presence.

Rituals and sacraments are extraordinarily important when patients and families are facing life-threatening or life-limiting situations. The rituals assist not only in making meaning, but also in making decisions. These rituals are the purview of religious professionals such as the chaplain. Other rituals such as bedtime stories, afternoon snacks, playing games, decorating the room, tea parties, using social media websites, involve many individuals and maintain familiar context and content for the child.

It is vital that every member of the interdisciplinary care team tries to comprehend what defines quality of life for the child and the family. The religious, spiritual, and ethical values of a family will dictate much. At a time when families are asked to make decisions about changing the course of treatment from aggressive cure to compassionate care, their core beliefs about death, salvation, the afterlife, and punishment and sin are as authoritative as medical information and advice. Families will frequently resort to theological language to express their hopes and fears. The team’s chaplain brings theological expertise to these discussions.

Jimmy’s mother asked the chaplain, “If I remove the ventilator, will I go to hell for killing my son?” The chaplain assured the mother that her decisions, based in love, would be understood by her God. Only the chaplain brings the authority of the religious community during these times. The physician, who may be an individual of faith, does not represent the theological establishments that have endorsed the chaplain.

Other members of the care team can assist the many individuals in the family in describing what they want most for themselves and for the child. The team members can ask questions such as, “Tell me what good living means to you?” and “What do you hope for most?”

In the late 1990s, a family had a 1-year-old boy in the hospital’s Pediatric Intensive Care Unit (PICU) with spinal muscular atrophy. He was without any muscle tone, he could not even blink his eyes. Yet the family insisted on intensive interventional care. They asserted that “God is merciful.” This was not quality of life according to the medical staff, but it was for the family. The child smiled with his eyes. He experienced loving care, and is still alive—tended by a family who still asserts that “God is merciful.”

Theologians often avow that there is a significant difference between hopes and wishes. Hopes, they maintain, have to do with the transcendent and eternal; while wishes are worldly and refer to one’s particular desires. This chapter asserts that, for children, wishes are just as important as hopes. Everyone wants to experience a full life, and a child’s wishes are about filling up his or her life with every possible experience. Clearly, the Make-a-Wish Foundation has taken this seriously. Care team members can also assist a child in making real some long-held wishes.

Karl, 17, was in a clinical trial for a very aggressive cancer. One of his wishes was to have a California beach party. The 3000 mile trip was impossible, but one of the care team members brought in an inflatable child’s pool, a bag of sand, a container of Pacific Ocean water (courtesy of a colleague and the UPS), a sun lamp, virgin piña coladas, a video of the Pacific coast, and a CD of the Beach Boys. Other members of the staff got in on the party. The attending physician dropped by wearing flip-flops and a Hawaiian shirt. What a wonderful time they had all one long afternoon.

Children also need permission to die. This is often something families have difficulty granting.

Andi, 4, was dying from acute sickle cell crisis. Her mother would stand at the side of the bed and watch the monitor. As Andi’s blood pressure dropped, her mother would say, “Andi, get that blood pressure up! You’re not going to leave me alone here.” And Andi’s blood pressure would climb. This went on for days. Some of the care team tried to press Andi’s mother into telling the girl that it is all right to die. But Andi’s mom angrily resisted, saying, “It’s not all right!” Finally a nurse who had known Andi and her mom a long time sat down quietly at the bedside…. She agreed that it was not “all right” for Andi to die, no one wanted that. But she wondered aloud with Andi’s mom what it might be “all right”for Andi to hear from her mother. Could mom say, “It’s all right for you not to hurt anymore”? Or could she say, “I’ll always love you, you never have to be afraid”? The nurse left and Andi’s mother sat for a while watching Andi instead of the monitor. A few minutes later the mother asked the chaplain to come and say a prayer. Andi’s mom bent over her and whispered to her daughter, and Andi died.

Tommy, 10, was hospitalized while waiting for a liver transplant. It was clear to the care team that he was very frightened, although he did not want to talk about how he was feeling. His mother was a single parent and could not spend the night with him very often. Tommy had trouble sleeping and would often wake from nightmares. These behaviors reflect the spiritual needs and/or distress of feeling secure, having agency, and trusting in a world that has a purpose for one’s self and others. Tommy came from a very religious Christian family and enjoyed going to church and saying prayers. He was also a talented and creative artist, and a bright and gifted student. One of his favorite activities in the hospital was playing video games. The care team met to discuss how they might best support Tommy during his hospital stay (Table 12-2).

TABLE 12-2 Care Plan for Addressing Spiritual Needs

Discipline	Role In providing spiritual care
Physicians	Encourage Tommy to ask questions about his medical condition. Spend a few extra minutes playing video games with him when possible.
Nursing	Spend time sitting with Tommy at bedtime reading a favorite story when possible.
Social work	Connect Tommy and his family with a former transplant patient who is doing well. Offer emotional support for Tommy’s mother through supportive counseling. Be a supportive presence for Tommy by regular visits.

Psychology

Provide play therapy for emotional expression.

Practice relaxation techniques.

Art therapy Provide a variety of art materials and work with Tommy in creating art for enjoyment and emotional expression. Music therapy Provide quiet meditative music on CD for Tommy to listen to when he is feeling distressed. Sing some of his favorite Sunday School songs with him. Child life Provide age-appropriate information about medical procedures, including pictures and dolls. Pastoral care Offer to pray with Tommy, provide appropriate religious materials such as music and bedtime prayers. Learn, through family spiritual assessment, about experience and beliefs surrounding illness and death in order to facilitate conversations with Tommy and to equip other team members to do the same.

Meeting spiritual needs is never about fixing anything. Caregivers cannot, and should not, attempt to fix another’s value system. That system which gives patients and their families meaning and purpose, alleviates fear and anxiety, and provides a sense of belonging. But each caregiver can consistently respect, ask about and listen to what motivates another and helps that person make sense of their world, be present, be creative, participate as we are comfortable and engage others when we are not, and acknowledge that our value system may not harmonize with those for whom we are caring.

When we offer palliative care to a child and his or her family it is always, in some sense, theological: Faith, hope, love, trust. Believing in something, anticipating some good, being cared for and caring for others, relying upon something or someone is somewhat theological. Medicine and spirituality walk hand in hand. The book known now as Sirach, or Ecclesiasticus, begins Chapter 38 with “Honor the physician with the honor due him, according to your need of him, for the Lord created him; for healing comes from the Most High, and he will receive a gift from the king. The skill of the physician lifts up his head, and in the presence of great men he is admired. The Lord created medicines from the earth, and a sensible man will not despise them.” Neither can the physician or care team “despise,” or in other words, scorn, the spiritual, religious and moral values –that are the foundation of a child’s and family’s life. Caregivers can stand, sit, and dance with others during the most intimate moments of living. Each member of the interdisciplinary team can offer care which leads to healing, if not always to life.

References

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9 Ting-Toomey S. Communication across cultures. New York: Guilford Press, 1999.