Discussing Pediatric Palliative Care with Social Worker Barbara Acevedo
Spending intimate, one-on-one time supporting families with seriously ill children is something of a passion for pediatric social worker Barbara Acevedo.
A member of the pediatric palliative care team at Salah Foundation Children’s Hospital at Broward Health, she has been supporting patients and families in that capacity for more than 10 years.
"We are with them every step of the way,” Ms. Acevedo says. Because the trajectory of an illness and treatment can require a child to be in and out of the hospital, sometimes over many years, she has the advantage of really getting to know her patients.
"I see families going through a difficult time in their lives, but I also witness the good times in their lives—going back to school, doing well with their treatment, finishing treatment, having a birthday. Or, just when they come in and share something that happened to them at school or in their personal lives.”
Of course, there are also difficult times when families need someone to talk to, guidance from the team, or access to additional resources. "We have some families where, unfortunately, their child is not doing well. Families need someone to talk to, to process what they’re going through.”
Often, those conversations reflect the diversity of the families whose children are admitted to the hospital that attracts patients from around the United States, Latin America, and Europe to its south Florida location. Physicians and members of the palliative care team also come from multicultural backgrounds, which is a big advantage.
"It’s beautiful,” says Ms. Acevedo, who speaks Spanish and English. "We get patients from all over—the Caribbean, Latin America.” With such a variety of cultures and languages, she and other members of the palliative care team work with certified medical translators, either on staff or available by phone, to interpret.
How do you measure success?
"I’m usually involved at the time of diagnosis, throughout their treatment, until they complete treatment and in follow-ups, and on those sad occasions when they don’t make it. But I also get to see children who are graduating from school, getting married—it’s a long-term relationship. I see more positive outcomes than negative outcomes.”
Palliative care is becoming an integral part of patient care plans, but there are still challenges. Parents often connect palliative care with hospice care and resist the extra support because they think it means their child is going to die. This is not necessarily true, especially for children, whose diseases do not always progress in ways one might expect in adult patients.
"Pediatric palliative care can help patients and families improve their quality of life. So we work closely with the attending physicians or family pediatricians to make sure they’re getting all the resources they need, whether it’s in the community or medical or specialty care.” Sometimes, that means arranging art and music therapy, or finding respite care so parents can take a break from caregiving.
The social worker’s role can also involve helping families with difficult discussions they have to confront—with their child or other family members. Those conversations may take place with their child’s doctors—perhaps around pain management or comfort care. "The patient, parents, and medical team work together with the palliative team to meet the child’s needs,” Ms. Acevedo says.
In Her Own Words
Barbara Acevedo recalls one of her most memorable experiences.
There was a patient I had, maybe five or six years ago. She was two years old, and diagnosed with a germ cell tumor. Her mother worked as a nurse in the hospital’s adult ICU. Because her patients typically received palliative care at the end of life, she equated it to hospice care. In this mother’s mind, palliative services meant "my child is dying."
I respected that, but still hoped to make a connection to support this mother. Every day, I’d say hello to her and her daughter, just to build rapport. Little by little, I got to know her—she began to see me as part of the team, and accept the help I could offer.
Luckily, her daughter went into remission, and she is now doing well. I have seen them coming in for appointments and checkups. So I had a chance to ask this mother about how she got over her resistance. She told me, "I saw that you were there talking about quality of life for my child, and helping me cope. I saw the benefits. Now I promote this with my patients."