Joan Wilder: Journalist, Writer, Editor

Being present in the present

The responses to a survey completed by parents who experienced the death of a child in a pediatric ICU have prompted hospitals to encourage nurses to offer spiritual comfort to bereaved parents.

The questionnaire was sent to nearly 100 parents whose children (newborn to 18 years old) died in one of three pediatric ICUs in the Boston area within the previous four years. Five questions sought to uncover what had helped the parents the most while their children were dying. And, although the words “spiritual” or “religious” did not appear in the questions, 73% of responding parents referred to such experiences.

The parents’ emphasis on the value of spiritual/religious experience was so pronounced that a team led by Elaine Meyer, RN, PhD, director of the Children’s Program to Enhance Relational and Communication Skills at Children’s Hospital Boston, and Rev. Mary Robinson, MA, a Children’s Hospital chaplain, conducted research to analyze the survey responses. The results of their study were published in the September 2006 issue of Pediatrics in an article titled “Matters of Spirituality at the End of Life in the Pediatric Intensive Care Unit.”

The paper’s advocates are calling for clinicians to recognize the value of spiritual caregiving and the importance of teaching caregivers, especially nurses, skills they can use to administer it.

“There’s so much of an emphasis on the technical expertise of the treatments, yet there’s a whole other language here — spirituality and faith — that people really draw on in these difficult times,” says Meyer.

The study defines spirituality as distinct from religion. The importance of prayer, faith, access to clergy, and beliefs in the transcendental nature of the parent-child relationship emerged as themes among the parents. They also cited insight, wisdom, values, hope, trust, and love as sources of spiritual sustenance. Parents said that family, friends, ideals, nature, and health care teams served as spiritual resources.

The study’s authors believe that a nurse’s religious or spiritual life should not affect his or her ability to respond to a parent’s or patient’s spiritual needs. The authors advise nurses to avoid disclosing or “selling” their personal beliefs.

“We offer ways that nurses can model hospitality for all religions and spiritual practices,” says Robinson. “This is really about learning how to be a spiritual generalist with clinical skills to offer.”

Fundamental to a nurse’s necessary skills is the ability to be present in the moment.

“One of the most important roles of the bedside nurse is to listen carefully, be observant, and notice things,” says Meyer. “This can cue nurses as to when and if to inform parents about various hospital resources such as a multifaith chapel or the chaplaincy. In other cases, close observation reveals a parent’s need for privacy or someone to listen. Often, the only support a parent may be able to receive is the sense of not being alone — a resource that caregivers can create through their physical and emotional presence to help guide parents to appropriate action.

“Remaining present in the ICU can be very difficult — it’s a big and busy unit,” says Maggie Geller, RN, who has worked in Children’s pediatric ICU for nearly 20 years and is committed to what she calls “modeling presence” as a spiritual caregiver. “When parents get angry, just stay there and hear what they’re saying. You can be empathetic and affirm what they’re feeling.”

“The most important way we can help is to recognize that the process and journey for every person is different and our role is to step on the path with them,” says Nancy Sherman, LCSW, director for the Center for Grief and Healing at Hospice of the North Shore in Beverly, Mass.

A gentle approach communicates to the parent that they are in control of the direction any spiritual considerations will take. “At its best, I have seen spiritual care providers be comfortable with silences and provide comfort with their physical presence,” says Stacy Orloff, EdD, LCSW, cochair of the Children’s Project on Palliative/Hospice Services, an initiative of the National Hospice and Palliative Care Organization Advisory Council. “At its worst, I have seen spiritual care providers struggle and give reasons and explanations that don’t provide any solace.”

Sometimes good spiritual caregiving may be as subtle as a look of compassion when catching a parent’s eye or simply clearing the room when privacy is needed. Sometimes it entails offering to help wash an unconscious child’s hair or shave her legs — and laughing with a mother about how her daughter would be ostracized if seen with her hair unkempt.

No one can tell a parent how to come to terms with the death of a child. But there are many ways in which nurses can gently comfort parents through an awareness of the strength of shared humanity.

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