Mary Jo Gilmer
Children’s Hospital, VUSN examine end-of-life care
Prescribing treatment for dying patients has long been a part of the protocol for health care providers. With approximately 2.5 million adult deaths a year, focus on end-of-life care has gained more attention.
With a noticeable improvement in palliative care for adults, a consortium of hospitals, including Vanderbilt Children’s Hospital, felt it was time to look at a population many find difficult to study—children with life-threatening conditions.
Mary Jo Gilmer, Ph.D., assistant professor of Pediatrics at the Vanderbilt University School of Nursing, is a member of the Vanderbilt site team. The group seeks to enhance health care providers’ understanding and management of end-of-life care of children and their families.
The group is a part of a national effort called Enhancing Family-Centered Care for Children Living with Life Threatening Conditions. The project is funded by a $1.5 million gift from the Nathan Cummings Foundation, the Kohlberg Foundation, Inc. and the Open Society Institute’s Project on Death in America to the Education Development Center in Massachusetts. It brought together seven pediatric hospitals from across the county in hopes of offering better-coordinated services and education for childhood end-of-life issues.
“This is a fairly new concept because we don’t like to think of children dying,” Gilmer said. “We tend to deny it, but the fact is that children do die.
“I’ve been a nurse for 27 years working primarily with pediatric oncology patients and children in the PICU. I have seen a need for better-coordinated services and a more caring perspective in end-of-life issues.
“We hope to improve the comprehensive approach to care for children and their families. And we can’t talk about the care of children without identifying who they see as their support system, who they identify as their family,” she said.
Dr. Brian Carter, associate professor of Pediatrics, expressed interest in the initiative because of his longtime work with the Education Development Center. He said the focus of this movement stems from the successful work in the area of adult end-of-life issues.
“This is a response to the recognized need for improvements in end-of-life care across the board,” Carter said. “With improvements in the adult arena, it was only natural to improve care for dying children.
“Despite everyone’s best efforts, research and therapies, not all children will survive or benefit from life-extending measures that are provided. There will be an increasing role for palliative care as a curative role is not successful.”
The team’s objective is to explore Vanderbilt’s strength as an acute care delivery system as well as look at its emerging strength as a pediatric palliative care service. The group will seek input from the interdisciplinary members of the Palliative Care Steering Committee in its efforts to provide seamless continuity of care from diagnosis through survivorship and/or end of life.
The process is expected to take about two years. The first step is to review inpatient charts to assess pain and symptom management, when discussions of end-of-life decisions took place and if any interdisciplinary consultation for symptom management occurred. The team will simultaneously survey health care providers including social workers, chaplains and child life specialists about end-of-life processes. The last portion of the plan will involve interviews with families of children who have died.
With nearly 1 million children living with life-threatening conditions in the United States, the national initiative not only seeks to provide education for health care providers, but also improve the care for these children and provide family support.
Vanderbilt is an optimal setting to study and improve circumstances surrounding children’s deaths. The goals of the initiative are in line with the visions of Children’s Hospital, Carter said.
“Our goals are to improve the circumstances around dying, but also to improve palliative care of those living with life-threatening conditions,” Carter said. “We want the living to be as good as it can be for the patient and the families, too.
“There is a great need for the palliative care model to catch on. We want to achieve the best quality of life for patients and their families.
“By gaining an understanding of these issues, we will be able to improve the clinical care of the child and improve the ways we interact with and support the families. By asking questions about pain and symptom management and documentation and whether parental anxieties and fears were addressed, we will be able to target areas that need improvement,” he said.
Surveys will be distributed by the end of the year to staff working in NICU, PICU and pediatric cardiology and oncology. Although completion of the 23-item survey is voluntary and anonymous, staff members are strongly encouraged to assist with the initiative.
Carter said the hospital’s involvement is an excellent educational tool.
“As we get information we will share it with the other hospitals involved,” he said. “We hope to hold grand rounds, invite speakers, hold in-services and conferences focusing on providing palliative care for children living with life-threatening conditions.”