Children's end of life is a spiritual journey
Parents draw on faith, religion to sustain them
Despite the dominance of technology and medical discourse in the pediatric intensive care unit (PICU), many parents facing the end of their child's life view the experience as a spiritual journey as well as a medical one. Those families rely on religious faith or spiritual support as they struggle to find meaning in their children's situation and make end-of-life decisions for them.
These were two of the findings that came from the study conducted by Elaine Meyer, PhD, RN, director of the Program to Enhance Relational and Communication Skills (PERCS) at Children's Hospital Boston, and Mary Robinson, MA, MDiv, director of Children's Hospital Boston chaplaincy. The study was an outgrowth of a survey Meyer conducted on the same group — parents whose children had died in PICU — in which she asked families what was important to them during their children's hospitalization and death. Many replied that their faith was an important resource, so Meyer and Robinson dug deeper.
"For many of us who work in the ICU, we view death as a medical event or course; but for many parents, they view it not only that way, but also as a spiritual journey, and they draw on their faith, their faith community, and religion as a source to draw on and to help guide their decisions," says Meyer.
The Parental Perspectives Questionnaire was designed to elicit parental ratings about the end-of-life care and experience, adequacy of pain management, decision making, and social support. The survey included five open-ended questions that were the focus of the analysis:
- What was most helpful to you in getting through the time at the end of your child's life?
- What was least helpful to you in getting through the time at the end of your child's life?
- How can the hospital staff improve their communication with parents at this difficult time?
- What advice do you have for hospital staff members in helping parents during this difficult time?
- What advice do you have for other parents who are facing a similar situation?
While the questions did not ask specifically about spirituality or religion, parents spontaneously offered spiritual/religious responses, Meyer says.
Parent-child bond transcends death
Spiritual and religious themes were included in the response of nearly three-fourths (73%) of the parents who were queried. When asked what had been most helpful to them and what advice they would offer other parents in the same situation, four explicitly religious themes emerged:
Prayer — When asked what was most helpful in coping with their child's final days, and what advice they might offer to other parents, several parents indicated prayer and urged other parents to pray often;
Faith — Many parents identified their faith in God when asked what was most helpful to them at the end of their child's life. Some specifically said they took comfort in their faith that their child would be cared for by God after his or her death, while others said their faith was central to their efforts to derive meaning from the event happening in their lives.
One parent, however, said faith was not the comfort she had hoped for, saying, "Just when I needed my faith, I hated it, for deceiving both my child and myself!"1
Access to and care from clergy — Several parents responded that ready access to their own community clergy, as well as the hospital chaplain, was important to them. One noted that a nurse had been instrumental in pointing out to the parents that bringing in a clergy member might be helpful;
Belief that the parent-child bond extends beyond death — Some parents offered heartfelt, emotionally charged advice to other parents, Meyer and Robinson say, and emphasized the transcendent nature of the parent-child relationship.
More than half of parents who shared their experiences with Meyer and Robinson identified other themes that Meyer describes as "implicitly spiritual" — wisdom borne of experience; guidance according to one's own values; and virtues such as trust, hope, and love.
"These implicitly spiritual themes most often emerged in the context of advice to other bereaved parents," Robinson stated. That advice included suggestions that parents make preparations for their child's death ahead of time; not second-guess decisions after they're made; to let time and acceptance help heal; and to believe in their abilities as "terrific parents."
The parents also urged their peers to trust that the medical staff are doing the best they possibly can for the child.
Many parents emphasized the need for privacy at end of life, asking for "quiet time" and private, intimate communication with their children.
"This study gave us a deeper look into the qualitative questions [raised in the initial survey]," Meyer says. "Now that we know what matters, we can better equip our staff."
Robinson and Meyer point out that one of the more striking points made was that parents were more open about spiritual and religious themes when addressing advice to other parents than they were when addressing advice to medical staff.
"This suggested that parents may be reluctant to share this perspective with health care providers for any number of reasons, including the fear that their spirituality may be misunderstood or judged," says Meyer. "Perhaps parents fear that their spiritual perspective might detract from the medical care of the child."
But to the contrary, Meyer says, "it's not so much what we [medical staff] think is important. If it matters to the parents, it should matter to us."
The findings, Meyer says, tell her that medical staff, hospital chaplains, and community clergy should make all efforts to be hospitable to parents' spirituality and religious beliefs and to integrate the spiritual perspective into the care of their child.
"It has taught us a lot about some of the social support aspects that are important in that intense setting," she adds.
Meyer and Robinson say hospitals can be sensitive to parents' spiritual and religious needs at their children's end of life by taking the following steps:
- Creating an environment that is hospitable to spirituality and prayer;
- Providing clinically trained, hospital-based chaplains as an integral part of the PICU care team;
- Offering a multi-faith chapel that has a flexible space, a variety of devotional materials, is convenient to the intensive care units, and is open at all times;
- Inquiring if parents are part of a faith community, and whether they wish to invite their clergyperson to the hospital;
- Encouraging clinicians, hospital-based chaplains, and community clergy to partner in caring for families in crisis; and
- Being open to diversity of spiritual beliefs, avoiding imposing their own meaning to explain a child's death, and refraining from proselytizing.
Sources/Resource
For more information, contact:
- Mary Robinson, MA, MDiv, director of pastoral care, Children's Hospital Boston (MA). Phone (617) 355-6664.
- Robinson MR, Thiel MM, Backus MM, Meyer E. Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics 2006 ;118:719-729.
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