12 Faith, Hope, and Love

An Interdisciplinary Approach to Providing Spiritual Care

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 interrupts⁸ 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 cultures⁹ 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?

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