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It was one of the worst clinical experiences that Marcia Levetown, MD, FAAP, can remember: During her fellowship at Children’s National Medical Center in Washington, DC, one winter, two sisters were rushed to the ED after being found in a freezing cold pond.
"They weren’t found for a number of hours, so it wasn’t clear how long they had been submerged," she recalls. "There was a 2½-hour attempt at reviving the dead children."
The mother was outside the door of the two crash rooms, the final resting places of her only two children. "She was screaming and wailing and wanted to come in to see her girls, but no one would allow her to," says Levetown, a member of the American Academy of Pediatrics (AAP) Committee on Bioethics.
When the children were finally declared officially dead, the mother was brought into a separate room to be calmed down, without ever having the opportunity to be with the girls or to ask questions of their health care team, says Levetown, "The memory of that still haunts me," she admits. "We could have been much more humane in this case."
New guidelines on palliative care for children from the Elk Grove Village, IL-based AAP call for new approaches to prevent these disturbing scenarios, says Levetown. "We need to change our paradigm in the ED when we encounter either children who have been mortally injured or children who are chronically ill with a life-threatening condition, to better meet the needs of children and families."
Of the 53,000 U.S. children who die annually, only 1,500 die of cancer, Levetown notes. "Half of these children die of trauma, which has clear implications for both prevention and preparation in the ED setting."
You’re in a key position to advance the use of the guidelines, stresses Darlene Bradley, RN, MSN, MAOM, CCRN, CEN, director of emergency/trauma services for University of California-Irvine Medical Center in Orange. "The ED nurse can manage the physical care given and augment this with the psychosocial care that is also needed."
Here are ways to improve palliative care of children and comply with the AAP guidelines:
• Focus on increasing the child’s comfort.
In the ED, efforts at prolonging and preserving life are the main focus, but avoiding unnecessary pain by using local anesthetics, keeping invasive therapies to a minimum, and aggressively treating discomfort and anxiety should be an equally important priority, encourages Levetown.
"Managing symptoms is an important part of what our goal and mission is," she says. "In the past, it’s taken a back seat to our efforts to prolong and preserve life. This weighting of priorities needs to swing to a more balanced approach."
• Ask children for input.
Giving children even a modicum of control can be helpful in decreasing their anxiety, says Levetown. "While very young children can’t make completely autonomous decisions, it is ethically imperative to solicit their preferences and try to honor them."
For example, a seriously ill child may need to have an IV placed, says Levetown. "If the child is still conscious, why not ask them if they want it in their right or left hand? What harm is there in doing that? It will make the child feel important," she says.
• Collaborate with others to give the best possible care.
View palliative care and bereavement support as a "team sport," suggests Levetown. "The idea is not for ED staff to be fully responsible for all aspects of care, but rather to be able to diagnose the need for these issues to be addressed."
Levetown recommends calling upon colleagues who have special training, such as social workers, hospital chaplains, or child-life therapists.
The AAP guidelines recommend a more holistic approach that is centered on the patient, the caregivers, and support personnel, Bradley notes. Work with programs that support the mission for caring for children, she urges. Pediatric specialists, chaplains, social service workers, case managers, medical and nursing personnel, child-life specialists, and counselors can be brought together to form a palliative care team, she suggests.
These teams would be most beneficial when they can begin care planning for patients right after the patient comes to the ED, says Bradley. "That care plan developed by the team could then become the treatment plan for all care providers both in the inpatient and outpatient settings," she says.
• Send a bereavement card.
At Santa Barbara (CA) Cottage Health Systems’ ED, a bereavement policy includes sending a card from the ED staff to the family of any patient who dies in the ED or soon after they are cared for in the ED, says Denise Huff, RN, BSN, CEN, director of emergency and trauma services. (See bereavement card policy.)
Courtesy of Santa Barbara (CA) Cottage Health System.
Huff checks daily for deaths using the ED log, which has four disposition choices: admit, home, transfer, or died. Huff places a sheet with the demographics and cause of death in a file, and nurses regularly check the file and send the card.• Learn from nurses who excel at helping grieving families.
Huff says that the staff have grown to realize that some nurses are better at this than others. "We move assignments around sometimes, because we know that the patient or child who will die will have better care," she says. "We learn from watching our peers who excel at this."
Be honest and show emotion, recommends Huff. "Just let them know you care and how sorry you are and help them through this," she says. "Assign someone to them until they physically leave the department."
• Review patient classifications.
Caring for the child with terminal illness, lethal congenital conditions, or heritable disorders presents challenges to ED nurses because they require more than just supportive care, Bradley notes.
Because of this, all patient classifications are important to address and review at least periodically in the ED, Bradley advises. "Patients that require palliative treatment could have prolonged stays beyond what is required to do supportive care, because the psychosocial issues of the patient and their family must also be addressed."
Streamlined pathways that assist nurses in addressing needs and expediting care would improve service delivery, she recommends.
• Give the family privacy.
Make a private room available for family members to be with the child after death occurs, for as long as they need to be there, Levetown urges. "Give them a place to stay until other family [members] are able to gather. They may want to take molds of the child’s hands, bathe the child’s body, change them into clean clothes, take pictures, or hold them one last time," she says. "All those things help to bring closure."
However, private space isn’t commonly available in the ED, Levetown notes. "Death in the ED is not unusual, so staff may question the need to have that kind of facility available," she says.
Bradley points to her ED’s designated "Special Care" unit, which has private rooms in a section that is quieter and has limited access. "Locations such as this are useful to ensure the privacy of these patients and their families," she says. "Family rooms, grief or meditations rooms can also be used to provide privacy for the family."
Providing privacy for families might not be easy in a busy ED, but it’s a necessity, Huff emphasizes. "Close doors, anticipate your need for privacy, and provide it," says Huff. "We are experts at setting priorities. This is a priority, and it can be done."
For more information about palliative care in the ED, contact:
• Darlene Bradley, RN, MSN, MAOM, CCRN, CEN, Emergency/Trauma Services, University of California-Irvine Medical Center, 101 The City Drive, Route 128, Orange, CA 92868-3298. Telephone: (714) 456-5248. Fax: (714) 456-5390. E-mail: firstname.lastname@example.org.
• Roxie Foster, PhD, RN, FAAN, University of Colorado Health Sciences Center, School of Nursing, C288-10, 4200 E. Ninth Ave., Denver, CO 80262. Telephone: (303) 315-6099. Fax: (303) 315-0619. E-mail: Roxie.Foster@UCHSC.edu.
• Denise Huff, RN, BSN, CEN, Emergency Department, Santa Barbara Cottage Hospital, Pueblo at Bath Streets, Santa Barbara, CA 93102-0689. Telephone: (805) 569-7879. Fax: (805) 568-8228. E-mail: email@example.com.
• Marcia L. Levetown, University of Texas Medical Branch at Galveston, 301 University Blvd., Route 0566, Galveston, TX 77555-0566. Telephone: (409) 747-2090. E-mail: firstname.lastname@example.org.
A copy of the American Academy of Pediatrics (AAP) policy statement, Palliative Care for Children (published in the August 2000 issue of Pediatrics) is available. AAP policy statements can be downloaded free from the Web site (www.aap.org/policy/re0007.html), or can be purchased for $1.95 each, including shipping and handling. To order materials, contact:
• AAP Publications Department, P.O. Box 747, Elk Grove Village, IL 60009-0747. Telephone: (800) 433-9016 Ext. 4086 or (847) 434-4086. Fax: (847) 228-5245.