Age appropriate language essential for pediatric patients

Let the child dictate conversations

[Editor's note: This is the second of a two-part series that looks at communicating with patients who have difficulty communicating. Last month, we looked at innovative and proven strategies to communicate with patients who have dementia. This month, tips and strategies for communicating with pediatric patients, and their families, are offered.]

Caring for children in any segment of health care presents special challenges because your care extends not only to the child who is the patient, but also to all members of the family. Hospice staff members are accustomed to providing family support for all patients but pediatric patients and their families require specific skills not normally associated with hospice care.

"The biggest challenge is cultural," says Kathy Perko, MS, PNP, CPON, director of the Bridges Palliative Care program at Doernbecher Children's Hospital in Portland, OR. An 85-year-old at the end of life is acceptable and understood, but a 12-year-old in hospice care is not as easy to understand, she explains. "When the child is dying of a genetic disease, we are also working with parents who are dealing with the guilt of passing the disease on to the child," she adds.

Hospice nurses working with pediatric patients find themselves in the position of teaching parents and family members how to interact with the child, says Perko. "They must model best practices for family members because this is not a situation they've faced before."

One way to teach family members how to talk with the patient and to read their symptoms is to conduct all assessments out loud, suggests Perko. A nurse assessing pain might comment on the wrinkled brow or slight grimace and state the last time pain medication was used. She can then give pain medicine and notice, out loud, that the grimace or wrinkles are gone so the pain must be lessened, she explains. "Let parents see what you do and talk through your thought process so they can better understand their child's condition," she adds.

Be sure to find out what the family and child know about the child's condition before starting care, suggests Marion Taylor, RN, MSN, CPNP, director of Kid's Path at Hospice and Palliative Care of Greensboro in Greensboro, NC. "Have a private conversation with the parents to find out what they know and what the child knows," she says. Sometimes parents have not told the child, or siblings, that he or she is dying, so the nurse needs to know this upfront, she explains. "When we encounter this situation, we tell parents that we will not introduce the topic of death until they are ready, but if the child asks us directly, we will not lie," she adds. "We advise the parents to talk to the child and we offer support and advice on how to tell the child or the other children in the family." Although parents are reluctant to talk with children about death, the reality is that the child is ready before the parent, she adds.

When talking with pediatric hospice patients or their siblings, let the child dictate how much he or she wants to talk, suggests Perko. "Children will only talk about death as long as they can handle it. Your patient may ask a question or two about death, then stop and ask if you want to play Nintendo," she says. "When the child changes the subject, stop the conversation but be ready to pick it up again when the child shows interest."

Age appropriate language is key to all communications with a pediatric patient, parents, and siblings, says Perko. "If the family uses the phrase "pass on" instead of "die" and the child is old enough to have heard and understood the phrase, it can be used," she says. Be careful, however, of using phrases such as "he went to sleep" or "we lost ..." especially when talking with siblings because younger children might ask when their brother might awake, or when they can look for him, she explains. "We never use those phrases in pediatrics."

Incorporate play into communications with patients or their siblings whenever possible, suggests Taylor. "This is effective if the patient or sibling is non-verbal, or if you want to establish rapport," she says. Puppet play is one way to hold conversations, or you can talk while you work on a puzzle, she suggests. "Drawing is another good way to communicate so I always keep a pad of paper and markers with me," she adds.

With siblings, remember that children grieve differently, says Perko. "When a 3-year-old patient died, his sister was a kindergartner and grieved as a kindergartner," she says. "When she was in high school, she grieved for him again because as she was preparing applications for college she realized that her brother never got to go to college," she says. Preparing parents for different types of grief at different times of the siblings' lives is an important role for hospice staff, she adds.

Hospice nurses who don't normally care for pediatric patients are often apprehensive when they have a child as a patient, admits Perko. To alleviate some concern, two nurses can share the care of the child so they can each talk to the other for support, she suggests. "I always tell nurses they can take care of a pediatric patient," she says. "Although the patient is a child, compassion is compassion, and hospice nurses are great at showing compassion."