Parents Speak Out on End-of-Life Decisions for a Child

BOSTON, Sept. 8 -- There is no easy way for parents to make a termination-of-care decision for a dying child, but parents who have been there have offered some advice to physicians and nurses in the pediatric ICU.

In an analysis of questionnaires from 56 families (36 mothers and 20 fathers), the parents identified six priorities for end-of-life pediatric care, reported Elaine Meyer, Ph.D., R.N., of Harvard. and colleagues, in the September issue of Pediatrics.

These were honest and complete information, ready access to staffers, communication and care coordination, emotional expression and support by staffers, preservation of the parent-child relationship, and spiritual or religious support.

The findings came from a three-site study including Children's Hospital, Massachusetts General Hospital, and Tufts New England Hospital. The children, newborn to 18 years, had died in pediatric ICUs 12 to 45 months earlier, after withdrawal of life support.

"Despite recognition that children have significantly different causes of death and special developmental considerations, the unique palliative care needs of dying children and their families have received less empirical inquiry," wrote Dr. Meyer and colleagues.

The parental priorities were:

• Give honest and complete information. The parents' advice was to listen, answer all questions, and give all information because "parents can handle it."
• Provide ready access to staff members. Many parents emphasized ready access to staff members as a means not only to gain information but also to foster reassurance, trust, and emotional peace of mind. "Set a regular time for 'office hours at bedside,'" they suggested. The perception that staff members, especially the primary doctor, were in a hurry and could not spend more time talking to parents produced considerable stress.
• Communication and care coordination. Many parents identified the sheer number of professionals and the coordination of communication and care as a problem. Some families preferred a single familiar figure to serve as spokesperson; others wanted to hear it all.
• Emotional expressional and support by staffers. Parents strongly endorsed staff members' genuine expression of kindness and compassion. "Be compassionate and ask how parents are," they advised, and "don't fall into that detached type of working. Parents need to feel that people care, not that it's just a job."
• Preservation of the integrity of the parent-child relationship. In general parents want to be recognized for their vital role, responsibility, and contribution to the child's care. Most parents expressed a strong need to be physically close and to care for the child, including death.
• Faith. Many parents acknowledged their faith as central to their efforts to making meaning of the situation, to provide guidance, and permission around end-of-life decision-making. Of the parents who reported their faith as being important, most, but not all, emphasized its positive aspects.

Commenting on the findings, Dr. Meyer's team offered some suggestions. Although there was variability, most families wanted a voice in their child's end-of-life care rather than specific control over each life-sustaining treatment decisions.

In addition, may parents emphasized that information should be communicated in a manner that "connects the dots." Several parents reported being overwhelmed by the sheer number of staff members, and being uncertain about how to integrate the output of these consultants. Physicians are urged to assess and accommodate parents' preferences for how information should be communicated, the researchers said.

Addressing the preservation of the parent-child relationship, the investigators emphasized the parents' need for privacy and the right not to be "hovered over."

Many parents emphasized the need for privacy at end of life, asking for "quiet time" and the wish to be in private intimate communication with their child.

"We speculate," they said, "that the tension that staff may experience between staying close to provide support or offering privacy reflects the complexity of family needs and clinical circumstances and requires gentle inquiry and clinical judgment to discern."

In reviewing the limitations of the study, the researchers noted that the sample was relatively small, white, and English-speaking, and the findings were self-reported. Furthermore, the participating institutions came from the same Northeastern city, and thus generalizability could be limited.

Other limitations included the fact that it was not possible to determine the difference between responders and non-responders, and the differences in diseases processes and bereavement periods.

These parental priorities and recommendations "offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research," the researchers concluded.

In a second survey of the same 56 parents, also reported in Pediatrics, the researchers narrowed their focus. This time their goal was to assess the role of spirituality in helping parents make difficult end-of-life decisions.

Overall, they reported, spiritual and religious themes were included in the response of 73% (41 of 56) of parents. The parents were asked what had been most helpful to them and what advice they would offer to others. Four explicitly religious themes emerged, Dr. Meyer and colleagues reported.

These were prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. Overall, spirituality helped guide these parents in making the end-of-life decision, in making meaning of the loss, and in sustaining them emotionally, the researchers said.

The responses were not unanimous, however. For example, one mother stated, "Just when I needed my faith, I hated it, for deceiving me and my child."

Parents also identified several implicitly spiritual/religious themes, including insight and wisdom, reliance on values, and virtues such as hope, trust, and love.

One of the most striking patterns of the data was that parents wrote more freely about spiritual and religious themes when they offered advice to other parents rather than to clinicians. "This suggested that parent 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," Dr. Meyer said. "Perhaps parents fear that their spiritual perspective might detract from the medical care of the child."

Despite the dominance of technology and medical discourse in the ICU, many parents experience their child's end of life as a spiritual journey, the researchers said. Staff members, hospital chaplains, and community clergy are encouraged to be explicit in their hospitality to parents' spirituality and religious faith, to foster a culture of acceptance and integration of spiritual perspective, and to work collaboratively to deliver spiritual care.