Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

9. Spiritual Dimensions

227 Some of the most profound encounters with dying children and their families center on questions of spirituality and faith: Why? What happens? How will we survive? For many clinicians, responding appropriately to utterances of such transcendent gravity is perceived as extremely challenging. How, for example, should one react when a parent declares to the bedside nurse, “I can’t stand it when people say this is all part of God’s plan!” or when a young adolescent boy says quietly to a physician, “I wonder whether I am good enough for God,” or when a teenage girl struggles, in a time of crisis, to decide whether she feels more at home in the faith community of her mother or her father, who come from different religious backgrounds? We hope in this chapter to encourage clinicians to engage children and families in discussions about matters of spiritual or religious importance, and to do so by providing some concrete guidance. Our suggestions and the suggestions of the experts we cite regarding these conversations are not the only possible questions and responses, but rather a starting point to allay the fears of clinicians who are hesitant to begin such discussions: a gentle inquiry from a concerned clinician is almost always preferable to leaving a child and family alone in their distress. By entering into these conversations , we trust that dedicated clinicians over time will develop their own repertoire of tactful queries concerning spiritual issues, as well as certain common heartfelt responses to the difficult questions that inevitably arise for anyone confronted with the possibility of a child’s death. 9 Spiritual Dimensions Dexter Lanctot, M.Div., B.A.Ph., Wynne Morrison, M.D., M.B.E., Kendra D. Koch, and Chris Feudtner, M.D., Ph.D., M.P.H. 228 the cycle of care Acknowledging Spirituality and Engaging in a Spiritual Journey Crossing the threshold of the patient’s room and walking toward the broad window seat, the physician approached the mother and father who held in their arms their son, who had taken his last breath just minutes ago. The doctor crouched next to the parents, who were crying quietly. After a few moments, the mother said: “Right before he left us, the sunlight broke through those clouds and came down and shined on him. I never knew that someone dying could be so beautiful.” Broadly speaking, both religious and spiritual beliefs and practices help human beings to mediate between worldly and transcendent concerns (fig. 9.1) (Feudtner, Haney, and Dimmers, 2003). Said somewhat differently, the conversations we have with ourselves and others about the meaning of life, the nature of our faith or devotion, feelings of awe and sacredness, the relationship we have with God or a higher power, beliefs regarding morality, and questions about mortality, death, and the afterlife are often (but not always) couched in religious or spiritual terms, as are thoughts and feelings of how these transcendent issues are connected to our everyday lives. If we want to enter into this conversation with our patients and families, we need Figure 9.1. Spirituality, religion, and other beliefs and practices WORLDLY TRANSCENDENT MEDIATION Spiritual Religious Non-Spiritual, Non-Religious Beliefs or Practices Social & Cultural Relationships & Roles Mind & Emotions Physical Body Meaning of Life Morality Faith & Devotion Sacred,Holy,& Numinous God,Higher Power, & Universe Mortality & Death Afterlife spiritual dimensions 229 to gain a certain comfort and fluency in talking about spiritual and religious concerns. We should maintain as wide and inclusive an understanding of the terms “religion” and “spiritual” as we can. Religion usually implies specific structures , doctrines, narratives, beliefs, practices, and rituals that connect an individual or community in its day-to-day life with ultimate or transcendent concerns such as ultimate meaning, purpose, ground of being, God, creator, or the supernatural. The term spiritual, while also embracing the many nuances associated with questions of ultimate meaning and transcendence , is broader in scope than the term religion because spiritual includes those who do not necessarily belong or subscribe to a formal, structured belief system involving doctrines and rituals (Stuber and Houskamp, 2004). Spirituality has been more broadly defined as “that which brings significance , purpose, and direction to people’s lives” (Cohen, Wheeler, and Scott, 2001) or “one’s relationship with the transcendent questions that confront one as a human being and how one relates to these questions” (Sulmasy, 2006). For young children in particular...