Karen Zrenda remembers the first time she took her newborn son Tommy outside.
Tommy's respiratory defect had kept him at Yale-New Haven Children's Hospital for nearly the first year of his life. The sun shined on him for the first time.
"It seemed like such a normal thing, but it was so exciting. It felt like a sign that we were going to be able to take him home," Zrenda tells WebMD.
These ordinary moments, like walks outside or cuddling in a rocker, kept Zrenda going.
"In the hospital, you get so wound up in the medical care. That's the focus 24/7. It's important to try to put a little bit of normalcy into the family's life," says Zrenda, who is now coordinator of the hospital's family connections program.
Bringing normalcy to families' lives is a goal of pediatric palliative care, also known as pediatric advanced care (PAC). Many families, however, resist palliative care because they think it's limited to end-of-life care.
"We're supporting the whole family, beginning at [the child's] diagnosis and following them through," Yale PAC team coordinator Cindy Jayanetti, NP, tells WebMD.
What is pediatric palliative care/pediatric advanced care?
Pediatric and neonatal palliative care include all measures taken to lessen suffering at every stage of a child's illness. The PAC team guides children and their families through the hospital experience.
The palliative care team doesn't replace the active treatment team. The two work side by side.
So what does palliative care add? Sick children and their families can suffer, physically and emotionally, at all stages of chronic and life-limiting conditions. The pain may come from symptoms of the child's condition, of course, but also from side effects caused by curative treatments, anxiety over diagnosis, or dread of an unsure future.
"Dramatic life changes are going to happen both for the child and the family, so we're brought in. When the child becomes stable or there don't seem to be those kinds of needs anymore, we can sign off," says Helene Morgan, LCSW, social worker on the comfort and palliative care team at Los Angeles Children's Hospital.
For parents who fear that the PAC team is only called in when there are no other options, Arden O'Donnell, LCSW, tells WebMD, "The team's job and the doctor's job is to save the patient. You do everything you can to save every single child."
O'Donnell, who is a palliative care social worker at Dana-Farber/Brigham and Women's Cancer Center, says when parents are being asked to make hard decisions, PAC should be there.
Sadly, children's health sometimes takes a turn for the worst. When curative treatment fails, the PAC team continues to work with the family to help identify the child's and the parents' wishes and goals of care.
"We had a little girl who desperately wanted to attend the Halloween parade in the hospital. So it became the focus of clinical decision making," says Megan McCabe, MD, director of the pediatric critical care fellowship program at Yale School of Medicine.
If a child dies, the palliative care team continues to support the family through the bereavement process.
"It's so important to have someone who already knows you, to keep the relationships you have, not to bring in somebody new at the time of death," Morgan tells WebMD.
For these reasons, it is ideal for palliative care teams to come in as soon as a child is diagnosed with a chronic or life-limiting condition. "The earlier you get a team in, the better -- even if you never use it. PAC has signed off on many people because they got better," says O'Donnell.
Coming in early, the team can learn the triggers of suffering for each family member as well as their sources of strength.
"We can build on them later when the going gets really tough," says Andres Martin, MD, medical director of Children's Psychiatric In-Patient Service at Yale-New Haven Children's Hospital.
A PAC team typically is composed of a doctor, a nurse coordinator, and one or more mental health specialists. The latter may be a social worker, psychologist, psychiatrist, child life specialist, or any combination thereof. Many children and families benefit from a nondenominational hospital chaplain as well.
Communication: The heart of pediatric palliative care
Effective, supportive communication is the heart of pediatric palliative care.
The more complicated a patient's condition, the greater the number of specialists who may be involved and the greater the number of decisions to be made. The palliative care team can serve as an objective third-party advocate for the patient and family and as a moderator of intense communications with and between the child's doctors.
Among the team's first objectives is to learn the goals, wishes, and values of the child and family. Later, if decision making becomes more difficult or heightened emotions cause parents to lose focus, the team can help keep treatment plans on track with the family's original wishes and goals. And the team helps families re-evaluate goals as circumstances change.
With pediatric patients, there may be parents, step-parents, and grandparents involved in decision making. "The majority of our job is being mediator among family members' multiple, conflicting perspectives," says Terri Major-Kincade, MD, who is a neonatologist with a specialty in palliative care.
The team also helps parents discuss difficult matters with children, whether it is breaking the news of a diagnosis, explaining a condition, or, if the time comes, explaining the possibility of death to the patient and the siblings. Social workers and child life specialists may also give presentations at patients' and siblings' schools, or work with school psychologists, so classmates and friends can understand.
"It's not easy for anyone to talk about," says McCabe. But parents don't have to do it alone.
Parents are always given the option of explaining their child's condition themselves, but they usually choose to have a specialist in the room who can take over if the conversation becomes too difficult, says Kendra Frederick, who is the certified child life specialist in the pediatric oncology unit at Yale-New Haven Children's Hospital.
There are precise ways to explain illness and death to children depending on their age. "[These conversations] are a lot like surgery. There's a specific procedure. There are questions you can ask that open a conversation up rather than shut it down," says O'Donnell. Social workers can help role play difficult conversations with parents before they occur or show them means of breaking the ice.
Few things could be more difficult than talking to a child about the possibility of not surviving an illness. All experts who spoke to WebMD agree that children usually know more than parents think.
"The kids know what's going on. No matter how hard parents try to protect them from the truth, they know," says McCabe.
Children often won't ask questions if they sense their parents don't want to talk about it. So open communication can relieve a great deal of children's anxiety and suffering.
Pediatric Palliative Care: Support for the Whole Family
The pediatric palliative care team works across disciplines to support the whole family and the whole person. It may be a doctor that offers emotional support rather than a social worker. It may be a chaplain who rocks a baby in neonatal ICU rather than a nurse.
As McCabe tells WebMD, having a seriously ill child "is a marathon," and families need to maintain some elements of normalcy in their lives in order to pace themselves and to cope with long hospital stays.
McCabe gives parents a couple of days to get used to being at the hospital before she reminds them that they need to have regular meals, go home for showers and clean clothes, and get outside for a walk or a cup of coffee from time to time.
Normalcy also means having normal moments with your child. "It's very easy to lose sight of that when you're in an intense medical environment, but it's so important," Zrenda says. She should know: Zrenda's son was 4 months old before she was alone with him for the first time.
"You always have a lot of time at home alone with your child, holding him. But I had never had that [with Tommy], so you realize how important it is. We need to make those moments happen for families," Zrenda says.
PAC teams help families have parent-child moments in the hospital by arranging alone time, walks outside, or family portraits with photographers.
"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."