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New palliative care guidelines from the American Academy of Pediatrics draw attention to aspects of care that are not routinely focused on in the ED, reports Darlene Bradley, RN, MSN, MAOM, CCRN, CEN, director of emergency/trauma services for University of California-Irvine Medical Center in Orange.
"When we care for children, we generally think of injury that is trauma-related and illnesses that are part of growing through the stages of child development," she says. "Our focus for education is generally on injury prevention."
Palliative care provides for the relief of symptoms resulting from the physical ailments and from conditions that might interfere with the child’s ability to enjoy life, Bradley explains. There is a lot you can do in the ED to make these children comfortable, she urges. Here are ways to increase comfort of dying children:
• Increase your knowledge of pain management.
You might have misconceptions about the use of opioids for both pain management and dyspnea, warns Marcia Levetown, MD, FAAP, a member of the American Academy of Pediatrics Committee on Bioethics. "I exhort nurses to understand that these symptoms can be controlled safely. If you feel you lack knowledge in this area, you need to take every step to remedy that."
One study asked ICU nurses given orders to administer opioids to patients who remained on ventilators whether they felt they were committing euthanasia.1
"A huge percentage said yes, when in fact studies have shown that patients are not only more comfortable, but live longer when given opioids,"2 says Levetown.
The dangers of pain medications are overblown, Levetown emphasizes. "This common exaggeration of the risks may prevent us from giving the humane care that is at our disposal to give, that does not compromise our ethics. By giving medications and alleviating suffering, we have the power to make patients comfortable until the very last moment of their lives."
Sophisticated knowledge of pain management helps to ensure that children will never suffer needlessly, says Roxie Foster, PhD, RN, FAAN, associate professor at University of Colorado Health Sciences Center School of Nursing in Denver. "Our goal must be to relieve as much pain as possible."
Comfort is one of the few aspects within our control when caring for a terminally ill child, says Foster. "Parents tell us that it makes a tremendous difference to know their child did not suffer," she says. "Optimal pain management can ease not only the immediate loss but also assists families as they relive the experience in the long process of recovery."
• Accept that symptom management is an important goal.
Not every patient benefits from the most aggressive therapies possible, argues Levetown. "We need to consider the context of the whole person and think about whether or not it’s reasonable to do our normal’ things to this patient. We shouldn’t use technology simply because it’s available."
Whenever a child develops a life-threatening condition, turn your attention to the physical, psychosocial, and spiritual comfort of the child, urges Levetown. "Do this whether the goals of the present moment are life extension or increasing the child’s comfort, regardless of the length of life."
• Use alternatives.
This is an opportune time to utilize alternative therapy concepts such as music therapy and distraction techniques, says Bradley. "In a chaotic ED, I have seen a container of aromatherapy oils put out that had a calming effect on the staff."
Similarly, patients that are tachycardic, anxious, or nervous benefit from music therapy, Bradley notes. "There is music that beats at a rate of 60 per minute, and this musical rate has been documented to lower the patients heart rate and promote relaxation.3 Some facilities have a central system piped in to patients’ rooms that provides music."
Music that is quiet and calming in nature might have positive effects on the staff as well as the patients and family members, Bradley suggests. "Music can also be used as a distraction where children that are chronically ill can be entertained or encouraged to sing along with Disney songs, for example."
There also are many published studies on touch that includes massage, Bradley says. "Chronically ill children seem to be comforted by the touch of the caregiver. There is also a published study demonstrating satisfaction with care when sometime during the care, a gentle touch was given to the patient by the caregiver."
Alternative approaches are sometimes limited by the attitudes and beliefs of parents and professional staff, says Foster. "In high-tech settings, parents may expect high-tech approaches," she explains. "They may need gentle encouragement to see the value in traditional comfort measures and alternative measures."
Research about alternative therapies can help professional staff decide which measures are most appropriate, Foster suggests. "Parents may be reassured when they know alternative approaches have a research base."
Foster cautions that family beliefs and values are paramount, however. "Ask, Are there are pain relief measures you wish to avoid for personal or religious reasons?’" she recommends. "Also ask what comfort measures parents use at home. Then manipulate the environment to allow these mutually comforting activities in the emergent setting."
1. Asch DA. The role of critical care nurses in euthanasia and assisted suicide. N Eng J Med. 1996; 334:1,374-1,379.
2. Partridge JC, Wall SN. Analgesia for dying infants whose life support is withdrawn or withheld. Pediatrics 1997; 99:76-79.
3. Good M, Picot BL, Salen SG, et al. Cultural differences in music chosen for pain relief. J Holistic Nurs 2000; 18:245-261.