Parents whose children died in PICU share end-of-life advice
Honest, emotional care by staff helps bolster parents
Parents of children who died in pediatric intensive care units want doctors and nurses to know that they respect and appreciate care providers' technical skills, but what they need more of is a personal, emotional connection with their children's medical providers.
"It's surprising, the depth of the relationship that can grow between caregivers and family," says Elaine Meyer, PhD, RN, an associate professor of psychology at Harvard Medical School and director of the Program to Enhance Relational and Communication Skills (PERCS) at Children's Hospital of Boston. "Families said emotional expressions from the staff were important to them."
Meyer and her colleagues asked 56 families of children who had died in pediatric intensive care units (PICU) in the 12 to 45 months prior to tell them about what was important to them as they were making end-of-life decisions for their children. The families, providing information via a questionnaire, identified six priorities for end-of-life care in children:
- honest and complete information;
- ready access to staff;
- coordination of communication and care;
- emotional expression and support by staff;
- preservation of the parent-child relationship; and
- spiritual or religious support.
"The death of a child is an unexpected and unimagined event for most families. Even families of children who are born with life-shortening conditions cannot truly be prepared, because the death of a child inherently violates the natural order and is always out of season," wrote Meyer in her report on the study, which appeared in 2006 in Pediatrics. Still, she added, "questions about what constitutes and how best to provide end-of-life care for children remain inadequately answered."
Physicians and nurses mostly agree — having conversations about end of life with the parents of a child is hard. One thing that might make it easier is that parents want the truth — honest and complete information.
"Some parents advocated that the 'big picture' be presented, to the extent possible, noting that the broader clinical perspective aids with end-of-life decision making and psychological adjustment after the child's death," Meyer wrote.1 "Listen. Answer all questions. Give all information — parents can handle it. What we cannot handle is not knowing what is going on."
Meyer says parents sometimes feel that technology and science sweep aside the personal and emotional segments of their child's care.
"I think that really, so much of our education resources and emphasis reflects our technical expertise, and it needs to, but I think what this [study] does is it reminds us of the importance to the families of our interpersonal skills and relational skills, and our ability to establish relationships and communicate well," she says.
In other words, parents want health care providers to keep in mind their "pure vocation" — the reasons that most of them entered health care — to help others and bring comfort to those in need.
Parents said that rather than shielding them from painful truths, medical staff should put all the information in context and be as open and honest as possible. Meyer writes in the journal article that knowing the truth is key to relieving some of the parents' guilt that can come if difficult end-of-life decisions, such as termination of care, need to be made.
"These parents had experienced end of life in a pediatric ICU, so we asked them to reflect back so that we could understand from their perspective what made for meaningful care," Meyer says. "They were quite poignant in their responses. The one thing they really felt was that staff had the capacity to really enhance those final days or hours, especially if we could be mindful of their parenthood even at the end of life and, to the extent we could, help them be the best parents they could be, even at the end of life."
Emotional expression, support wanted
Meyer says while parents want the best medical and technical care for their child, they want it to come from people with whom they can establish personal connections. Parents often had the feeling that staff — especially the primary care physician — were hurried and had little time to spend talking at the child's bedside.
"This takes us back to the purity of the original vocation — the reason you wanted to be a doctor, nurse, psychologist, chaplain," she explains. "The vast majority is because they wanted to help people. But sometimes the way we're socialized in medicine takes us away from that, with the demands and the paperwork.
"This is a call to come back to that. The things we associate with good bedside manner — our therapeutic use of self; here, we consider that an asset rather than a liability."
Developing — or rediscovering — those interpersonal skills is the goal behind PERCS, an educational initiative that trains staff on how to have difficult conversations with families dealing with end-of-life issues.
"I think [the survey] was important, because it put [parents] in the position of expertise," Meyer explains. "Rather than us telling them what was important, we wanted them to tell us what was important."
Sources/Resource
For more information, contact:
- Elaine Meyer, PhD, RN, director, Program to Enhance Relational and Communication Skills (PERCS); associate professor of psychology, department of psychiatry, Harvard Medical School; medical surgical intensive care unit, Children's Hospital Boston. E-mail: [email protected].
- Meyer EC, Ritholz MD, Burns JP, et al. Improving the quality of end-of-life care in the pediatric intensive care unit: Parents' priorities and recommendations Pediatrics 2006; 117:649-657.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content