A survey of parents indicates that they not only want the best medical care, but also seek out 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, finding meaning in their loss and sustaining them emotionally.
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, which prepares clinicians to have difficult conversations with parents.
They administered anonymous questionnaires to 56 parents whose children, newborn to age 18, died in pediatric intensive care units at Children's, Massachusetts General Hospital or Tufts-NEMC Floating Hospital for Children after families decided to withdraw life-sustaining therapies.
Although not asked explicitly about religion or spirituality, 73 percent of parents offered responses related to those topics when asked what helped them most in getting through the end of their child's life, and when asked what advice they would give other parents. Prayer, faith, access to clergy and the belief that the parent-child relationship endures beyond death were common themes. Regarding withdrawal of life-sustaining therapies, one parent commented, "A discussion with our pastor confirming we had the scriptural authority to make these decisions was very helpful." Another advised parents, "Keep talking to your child—let your child know that you are OK. That it is OK for them to go on."
Interestingly, parents wrote much more freely about spiritual/religious themes when advising 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. They reconcile with God, and it's a very powerful experience to witness."
Meyer and Robinson urge hospital workers to be sensitive to parents' spiritual needs by creating environments hospitable to spirituality and prayer, keeping a multi-faith chapel open at all times, and integrating clinically trained hospital chaplains—and community clergy if applicable—into ICU care. They also advise clinicians and chaplains to refrain from proselytizing and to avoid imposing their own meaning on a child's death.
Asthma is becoming more and more common, and hitting minority groups especially hard. Children's Hospital Boston pulmonologist Robyn Cohen, MD, has found differences in the way two ethnic groups access asthma care that she believes warrant further investigation.
Cohen and her colleagues analyzed data from more than 6,500 low-income children in Hartford, Conn., more than 2,900 (45 percent) of whom were diagnosed with the disease. The Puerto Rican children had worse asthma than their African-American peers, and made almost 30 percent more clinic visits for asthma, but the African-Americans spent three times as many days in the hospital for asthma treatment.
"Are we not reaching out enough to make all families feel comfortable about coming to the clinic?" Cohen wonders. "Do Puerto Rican children get more care early in their illness? Are we not teaching families to recognize asthma symptoms? We don't know the answers to these questions."
Many studies have compared asthma care between whites and African-Americans, but relatively few have looked at Hispanics and even fewer have looked at Hispanic groups individually—despite noted differences in asthma frequency and severity between Puerto Ricans and Mexican-Americans, for example.
Elizabeth Woods, MD, director of Children's Community Asthma Initiative, speculates that cultural factors may influence families' willingness to take medications preventively, a cornerstone of good asthma treatment. Overall, only 18 percent of the children with persistent asthma filled their prescriptions for preventive medications like inhaled steroids, but Puerto Rican families were more likely than African-American families to do so.
"We want patients to preemptively treat symptoms so they don't have severe exacerbations that require emergency room visits and hospitalizations," says Woods. "We also need to help people understand the idea of taking preventive medication before they're sick."
Cohen's study appears in the August issue of Chest.