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Pediatric patients are more than 'little adults'
Social, clinical issues require different approach
Caring for a pediatric hospice patient requires more than just a knowledge of hospice care, says Sarah Friebert, MD, director of the Haslinger Family Pediatric Palliative Care Division at Akron (OH) Children's Hospital and consulting medical director to National Hospice and Palliative Care Organization (NHPCO).
"Children are not little adults," she says.
Social issues are different because there is a much larger, more diverse community affected by a child's life-limiting illness, says Friebert. "You also have to look at payment strategies, legal and ethical issues, and bereavement issues that are more complex than those you encounter with adults," she says. Legal and ethical issues are more complicated for pediatric patients because the goal of hospice is to respect the patient's wishes, but some children are not able to verbalize their wishes, or parents are reluctant to give children the opportunity to provide input, Friebert says. A hospice has to be prepared to present options to parents, and include patients as much as reasonably possible, in making decisions.
Managing a patient's symptoms is also more of a challenge when the patient is a child, says Mary Kay Tyler, CNP, MSN, director of pediatrics and clinical support teams at the Hospice of the Western Reserve in Cleveland, OH. "The initial assessment is more time consuming for a pediatric patient because asking a child to rate their pain on a zero to 10 scale doesn't work as it does for adults," Tyler says. The nurse must be able to perform an assessment that includes the child's feedback as well as observations of behavior, she explains. "We also ask children to use a scale that has faces on it to indicate pain level, or we ask them to color pictures that describe their pain," Tyler adds. (For a copy of a pediatric pain scale, go to www.partnersagainstpain.com/printouts/A7012AS6.pdf.)
A nurse cannot rush a pediatric visit, says Tyler. "There are times that we have to examine the favorite stuffed animal before we can check the patient's blood pressure and other vital signs," she says. Hospice managers need to keep the extra time needed for a pediatric assessment in mind when scheduling nurses, she suggests.
Administering medication differs from child to child, says Tyler. "I like to let children participate in decisions about their care, but there is a delicate balance between giving the patient some control and the parents' desire to protect the child from having to make tough decisions," she says. Determining how the medication will be administered is often a choice that patients can make, Tyler says. "I'll ask the patient if they want their medication as a pill or injected into their port," she says. "We also talk about how sleepy the medication makes the child, especially if they are trying to go to school, and adjust it if needed."
Helping families deal with their grief differs from family to family when a child dies, says Tyler. "In one family, a 17-year-old girl lost her twin sister," she says. The girl helped the nurse wash her sister's body, then she applied makeup to her face, Tyler says. "She felt like she was doing something for her sister that was important to her sister, because she never left the house without makeup," she says.
For more information about the National Hospice and Palliative Care Organization's (NHPCO's) pediatric standards of care, contact:
Sarah Friebert, MD, FAAP, FAAHPM, Director, Haslinger Division of Pediatric Palliative Care, Akron Children's Hospital, One Perkins Square, Akron, OH 44308. Telephone: (330) 543-3343. Fax: (330) 543-3539. E-mail: firstname.lastname@example.org.
Susan M. Huff, RN, MSN, Director, Pediatrics at Home, Johns Hopkins Medicine, 5901 Holabird Ave., Baltimore, MD 21224. Telephone: (410) 288-8009. Fax: (410) 282-8451. E-mail: email@example.com.
Mary Kay Tyler, MSN, CNP, Director of Pediatrics and Clinical Support Teams, Hospice of the Western Reserve, 300 E. 185th St., Cleveland, OH 44119. Telephone: (216) 486-6007. E-mail: MKTyler@HospiceWR.org.