Parents describe their spiritual needs when facing a child's death

A survey of parents indicates that they not only want the best medical care, but also need spiritual care when facing the death of a child.

The findings, published in the September issue of Pediatrics, indicate that spiritual/religious support is helpful to many parents in making end-of-life decisions for their child, in finding meaning in their loss, and for emotional sustenance.

The study was led by Rev. Mary Robinson, MA, MDiv, of Children's Hospital Boston's Chaplaincy, and Elaine Meyer, PhD, RN, director of Children's Program to Enhance Relational and Communication Skills (PERCS), which helps clinicians practice difficult conversations with parents. They administered anonymous questionnaires to 56 parents whose children had died in one of three pediatric intensive care units (ICUs) in Boston after the parents decided to withdraw life-sustaining therapies.

The deceased children ranged in age from newborn to 18 years, and represented the full range of medical and surgical diagnoses. Parents completed the questionnaires 12 to 45 months after their child's death.

The researchers focused on five open-ended questions:

1. What was most helpful to you in getting through the time at the end of your child's life?;
2. What was least helpful?;
3. How can the hospital staff improve their communication with parents at this difficult time?;
4. What advice do you have for hospital staff members in helping parents during this difficult time?;
5. What advice do you have for other parents who are facing a similar situation?

Although not asked explicitly about religion or spirituality, 73 percent of parents offered religious/spiritual responses when describing what had been most helpful to them and what advice they would give other parents. Four spiritual/religious themes emerged:

• Prayer ("Be strong and pray" was a typical response)
• Faith ("Put your faith in God" was a typical response)
• Access to clergy – the family's own as well as hospital chaplains. (One parent wrote, regarding withdrawal of life-sustaining therapies, "… a discussion with our pastor confirming we had the scriptural authority to make these decisions was very helpful.")
• Belief that the parent-child relationship endures beyond death. (One parent wrote,"Keep talking to your child - let your child know that you are OK. That it is OK for them to go on." Another wrote, "[Remember that they are] up in heaven happy and always watching over you like you watched over them.")

Parents also emphasized being guided by insight and wisdom, inner values, and spiritual virtues such as hope, trust, and love.

Of note, parents wrote much more freely about spiritual/religious themes when offering advice to other parents than when offering advice to hospital staff.

"Some parents may be reluctant to share their spirituality without being invited, because they fear it may be misunderstood or judged in the scientific culture of the hospital," Meyer notes. "But many parents experience their child's death as a spiritual journey, not only as a medical event."

The researchers call on hospitals to be explicitly sensitive to parents' spiritual and religious needs. Specific suggestions include:

• Create an environment that is hospitable to spirituality and prayer.
• Provide clinically trained, hospital-based chaplains as an integral part of the ICU care team.
• Offer a multi-faith chapel that has a flexible space, provides a variety of devotional materials, is convenient to the intensive care units, and is open at all times.
• Inquire if parents are part of a faith community, and whether they wish to invite their clergyperson to the hospital.
• Encourage clinicians, hospital-based chaplains and community clergy to partner in caring for families in crisis.
• Clinicians and chaplains should be open to diversity of spiritual beliefs, avoid imposing their own "one size fits all" meaning to explain a child's death, and refrain from proselytizing.

For more on Children's Program to Enhance Relational and Communication Skills (PERCS), visit: http://www.childrenshospital.org/percs.