Discussing Pediatric Palliative Care with Hospital Chaplain Mark Brown
One might imagine a job tending to the spiritual needs of young cancer patients and their families to be a sad experience, especially when the patients are children with brain tumors.
Not so, according to The Reverend Mark Brown, a chaplain working in the Brain Tumor Program at St. Jude Children’s Research Hospital, and past-president of the Pediatric Chaplains Network. "St. Jude is a place where the environment is positive and people are hopeful,” says Mr. Brown.
At St. Jude, a pediatric palliative care team known as the Quality of Life Service employs a multidisciplinary approach to provide young patients and their families with comprehensive care.
"I work closely with physicians and nurses and other medical staff, but I also work with other psychosocial team members who are social workers and child life specialists, and psychologists, and our wonderful rehab folks,” Mr. Brown explains.
"I meet our brain tumor patients when they first get here, and follow them through their treatment time, and through their time of getting good news and going home, or getting not-so-good news, and beginning to prepare for what that might mean for the family and the child. My job is to offer spiritual support and comfort to patients and their families as best as possible,” he says.
For all of the differences between and among families, Mr. Brown finds a universal thread. "There’s a great deal of commonality among all people whose children are suffering: We love our children. We are devastated. We are afraid.”
Every Journey Is Different
Of course, patients and families come from all walks of life as well as religious and non-religious backgrounds. "Faith is not always part of the picture,” says Mr. Brown. In such cases, he believes the chaplain’s role is that of companion, respectful listener, and conversation-starter. Chaplains can invite families to reflect on questions such as: What are the implications for my child, me, my family? How are we going to get through this?
"We’re here to support their journey, whatever that looks like,” he comments. "With adults, I listen for unique cultural features, that I may not be familiar with, that may help me lead them to additional resources…besides a chaplain.”
Part of the job is also to help young patients make sense of what is happening. "With children, especially younger children, I try to be aware of what children know about their disease process, and later on, about their prognosis for recovery. I listen to see if anybody is opening a door for them to ask the questions that they would like to have answered.”
Mr. Brown says that kids will often feel afraid to ask, "Am I going to die?” They don’t want to "make my mom and dad cry.” They want to protect their parents, and he says "we run the risk of not being able to answer their questions at all, or answering them in a way that’s just not developmentally sensitive, in a way they’re able to handle it.”
Notes Mr. Brown, "Parents make the decisions, but at the same time, I believe a child’s own autonomy should be respected as best we can within the limits of their own maturity. We owe it to kids to ask questions and… [give] them honest information that’s developmentally appropriate.”
Love, Faith, and Family
Pediatric Chaplain Rev. Mark Brown discusses the many layers of support for families and siblings.
With palliative care, families have a whole team to support them. "They can tap into whatever resources work for them—they may be spiritual, they may be friends from work, they may be family relationships—that help them stay faithful to the child and meet the challenge. But more than anything, our caregivers love their children so deeply that there’s no choice but to get through the experience in a way that tries to honor this deeply important relationship.”
When there are siblings involved, another level of support and engagement may be necessary—and it is often a reminder that continuing to be a family, and all that that involves, is important.
"I’ll often watch as brothers and sisters create projects, and act like families do,” he says. "One meaningful activity I’ve seen: they will make collages together. It allows the sick child to understand that the collage—and their centrality in it—ensures that they will remain part of the family.”
To draw meaning from such a difficult event in a family’s life, Mr. Brown feels that the work he is doing at St. Jude is sacred. "I feel privileged to work here.”