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Ending at the Beginning — Social Work in Pediatric Hospice and Palliative Care

By Sue Coyle, MSW

When most people hear “hospice,” they think of an elder woman struggling with one or several age-related diseases or a middle-aged man in the end stages of cancer. They think of an adult. But terminal illness and what follows—death—are not reserved for the aged.

Many children contract, develop, and/or are born with life-limiting or life-threatening conditions that often require palliative care, if not hospice. When that occurs, social workers are key members of the team that treats them, providing much-needed emotional support not only to the young patients but their families as well.

Palliative and Hospice Care
Palliative care and hospice care are similar. Both are designed to provide comfort to the patient. However, palliative care often leaves more doors open in terms of treatment and can begin as early as diagnosis. Hospice care occurs when treatment stops and the patient prepares for the end of life, acknowledging that survival is unlikely.

“Palliative care is for families who are going to still want to seek treatment,” says Pamela Ruzi, LMSW, ATR-BC, pediatric social worker for Hospice of the Valley in Arizona. “They may choose to have more aggressive care. But it gets to a point that they’ve done everything they can do. We [hospice] may enter their life at that point. We’re there to listen to them, to hear them, and to let them know that they do have choices.”

For adults, the move to hospice care is more definitive than it is for children. Adults in hospice, be it at home or inpatient, will not receive treatment for their condition. However, children, thanks to the Affordable Care Act, are able to pursue concurrent care—receiving both hospice and ongoing treatment, if desired. The children are still approaching the end of life but, if, for example, the parent chooses to return to the hospital with the child, they can do so without losing end-of-life services.

“It is a beautiful thing because a lot of families are starting to pull back on treatment but want to keep it open as an option,” says Marion Kimmerly, MSW, LSW, senior social worker in the home care and hospice program through Jefferson Health in Pennsylvania. “In the adult world, we would not be doing that.”

Kimmerly adds that the ability to provide such care can be difficult for traditional hospice workers when they first come to pediatrics. “It is hard for anybody who comes strictly from hospice to do that mind switch.”

The Role of Social Work
When hospice services are sought, a team comes in. Kimmerly and Ruzi both provide care in the community, meaning they go to the family’s home. The team that arrives with them always consists of a registered nurse and, in some cases, a home health aide. Organizations may also but do not necessarily employ occupational, speech-language, art, and music therapists when possible.

“The nurse I work with is wonderful,” Ruzi says. “For our hospice kids, we’ll try to go out together. She’ll do all the medical pieces, and together, we do a delicate dance, exploring exactly what the family’s health care goals are. The whole thing is a delicate dance.”

The social worker’s role in this dance varies, but what is consistent is the support that the social worker provides to the parents of the child. “When talking with the child’s parents, I hear stories about the child, their medical story; listen to the parents’ worries, hopes, and fears; discover the ways they cope; and learn about the people and things that bring them comfort and support,” says Marina Ceballos, MSW, LCSW, social worker at St. Louis Children’s Hospital. The hospital’s Wings program not only offers support when the child is dying but also provides services for up to 13 months after the child has passed.

The bond that is formed between parent and social worker is strong, as the social worker becomes a professional presence the family can rely on. Ruzi recalls a family with a young daughter who suffered with spinal muscular atrophy. When the father had a cardiac event and was rushed to the hospital, the mother called Ruzi.

“I went to the hospital,” Ruzi says. “I called his family.” The mother had been forced to leave the daughter with a home nurse whose shift was up, and Ruzi worked to ensure that the nurse was able to stay with the couple’s daughter until relief was available. “He was on life support,” Ruzi says of the father. “But he ended up living. Two weeks later he walked out of the hospital. Last week, he had major heart surgery.

“I am so honored that these families I work with feel comfortable to reach out in times of need, and open up for me to provide support that may be needed at difficult times.”

In addition to the parents, the social worker will provide support to siblings and, when possible, the child. “It depends on the age of the child and the cognitive capabilities of the child,” Kimmerly says. “If it’s a newborn, [the work] is with the family. Certainly with toddlers, it’s mostly with the parents and the siblings. But we have kids all the way up until their early 20s. If they have the cognitive ability, we talk about it.

“They [the children] are more worried about their parents and how their parents are going to be after they’re gone. These kids are wise souls. They’ve been dealing with this illness for years. They have a whole different maturity.”

As one would expect, working in the pediatric hospice field involves a great deal of challenges. For one, the social worker has to maintain enough boundaries that they are able to provide services without the emotional toll of those services seeping into their personal life and burning them out.

Kimmerly notes that her team is small and that many who have joined it have left, unable to separate themselves from what they were seeing on a daily basis. Often, these difficulties arose as the nurses and other providers saw glimmers of their own children and grandchildren in the patients. “The hardest cases for me,” says Kimmerly, who has a son, “are the teenage and young adult boys. I do have to step back and clear my head and try not to overidentify.”

Ruzi agrees that boundaries are crucial yet difficult to maintain. “Knowing when to put my work phone away and practice good self-care is the biggest challenge for me,” she says.

She also adds that being able to listen to the family—to what they want and what they need—can be a struggle. “You have to tuck your biases away and you really have to listen,” Ruzi explains. “I might ask a question five different ways and get five different answers before I really understand.”

One of the instances where understanding and accepting can be hardest is when the family is choosing what treatment to pursue. In those cases, each family is different. For example, “One might choose to not have a trach placed, and another will do everything possible,” Ruzi describes. The social worker must support the family regardless of where on this spectrum their decision falls and must do so without offering undue opinion or judgment.

While the challenges are very real and very prevalent in the pediatric hospice field, the benefits are as well. For one, the children that the social workers are able to work with are, as Kimmerly says, wise beyond their years. “I learn so much from these kids,” she says. “They’re fabulous; they’re absolutely fabulous. They have inspired and changed people’s lives.”

By way of example, Kimmerly reflects on a 10-year-old boy whose family had chosen to accept the home health aide services available to them. The aide who worked with them had been considering a career change, planning to leave health care and pursue other avenues. “This kid changed her life,” Kimmerly says. “[The aide] is going to go into nursing now. That’s how inspiring he was.”

Ruzi adds that the families as a whole inspire her. “I learn so much more from everybody I work with, every family that allows me to enter their life. I am coming into their lives as a stranger at a really emotional time,” she says. “I think it humbles you quite a bit. It opens me up to learning that there are all different kinds of people out there, making all different kinds of choices.”

What then does it take to be a social worker in this setting? “You must be flexible, creative, and go where the need takes you,” Ceballos says.

Kimmerly notes that the social worker should be open minded, resilient, and, similarly to Ceballos, prepared to provide support in whatever way is necessary. “A lot of times, it’s just sitting there and listening to them cry,” she says.

But more than anything, being a social worker in the pediatric hospice field takes a willingness to do it. “It’s not a matter of a drive or a trait,” Ruzi says. “You know if it’s for you or if it’s not. You just have to try it.”

— Sue Coyle, MSW, is an award-winning freelance writer, a social worker in the Philadelphia suburbs, and a frequent contributor to Social Work Today.