Pediatric Palliative Care: Easing Your Child's Suffering
A team approach sees kids and families through illness.
Pediatric Palliative Care: Support for the Whole Family continued...
"If your child never leaves the hospital, we need to make those things happen for families, to give them some of those memories. Because that's what will get you through later," Zrenda says.
Child life specialists help patients and siblings make memories together and express anxiety-causing emotions through guided art and play activities. They also help demystify the hospital experience for patients and siblings by always preparing them for what's next.
Before a sibling enters a hospital room for the first time, Frederick might take a photograph of the room and explain to the sibling everything he or she will see in the room. "I talk to them about the pumps they might see, the tubes, what bags of fluid and medication are hanging, so they're not overwhelmed when they come in," she says.
Frederick tells WebMD that siblings need a lot of attention at this time. Depending on age, they can feel grief or guilt over the sibling's condition or anger over the attention the sibling is getting. Many hospitals offer groups and activities for siblings. Experts advise parents to accept help from friends and neighbors to help keep siblings' lives as normal as possible by keeping them in their regular routines.
Pediatric Palliative Care: Managing Symptoms
PAC teams help primary care teams manage the symptoms of illness and the side effects of treatments, such as pain, nausea, vomiting, loss of appetite, sleeplessness, and anxiety. Symptom management often requires "thinking outside of the box," says Yale's Jayanetti.
Most pediatric and neonatal palliative care programs offer patients and families alternative therapies, such as aromatherapy, reiki, massage, hypnosis, reflexology, acupuncture, and guided imagery.
Massage has helped relieve pain in children with sickle cell disease. Reiki has relaxed children who are having trouble sleeping and eating. Reflexology has stimulated appetite, and aromatherapy has relieved nausea, Jayanetti tells WebMD.
In some neonatal ICUs, parents learn to use massage to ease their babies' pain. The aroma of a lemon-scented cotton ball has helped ease infants' pain as well, says Major-Kincade.
Where/When to Get Pediatric Palliative Care/Pediatric Advanced Care
Experts agree it is ideal to integrate pediatric palliative care with curative treatment at the first diagnosis of a chronic or life-limiting condition. If that does not happen, O'Donnell says there are other points when PAC should be brought in:
- If first treatment is unsuccessful
- If symptoms worsen, or if previous symptoms recur
- If parents are being asked to make increasingly difficult choices
- If parents feel they need more support
Doctors may suggest a consultation with the PAC team, and parents may also request it.
Pediatric palliative care is a relatively new medical specialty available in all major children's hospitals, academic hospitals, and in many mid-sized children's hospitals. But it is not available everywhere.
If a hospital does not have a palliative care program:
- Primary caregivers will perform some palliative tasks.
- You could ask your primary caregivers if it is possible to be referred to an outside facility for palliative care services.
"Parents need to know they can ask for palliative care and it does not mean giving up on treatments," McCabe says. "We work with the treating teams to get the best care possible for their children."