"Impassioned" is the word that comes to mind when pediatric palliative care nurse Suzanne Gwynne describes her work. She has been helping cancer patients—children and teens, and their families—for more than 30 years in the U.S. and Canada.
A Balancing Act
According to Ms. Gwynne, families must often make extraordinary efforts to stay with their children during treatment—sometimes far from home—while continuing to work, maintain as normal a schedule as possible, and keep the family at home intact.
Balancing ongoing treatment needs with an attempt to keep a semblance of normalcy can be fraught with complications. Since children cannot make medical decisions on their own, parents must make them under very stressful conditions. Ms. Gwynne notes that the palliative care team can help families in weighing certain options, but that may not lessen the complexity of these decisions.
That is when the palliative care nurse and the rest of the palliative team do their best to make a difference. As Ms. Gwynne puts it, "I really think of us as embracing the entire family… We can create a circle of support around them, but the family will always be the layer around that child, even if he or she is a teenager."
Whether in a clinical setting or at home, pediatric palliative care’s multidisciplinary approach can help increase the quality of life not only for the patient, but for all members of the family.
Ms. Gwynne notes, "There are things we can do to make this journey more comfortable by tuning in to the family’s wishes. What are your goals of care? Are there specific milestones you want to reach? Are there dates you want to reach? How can we help you get there?"
And in the case of the loss of a child, the support doesn’t end. "We will be there for you, for your family and loved ones afterwards. Once you become part of our family," she says, "we won’t let go until you decide you’ve got what you need."
A Message to Families
A child’s illness affects everyone. So how does a palliative care nurse help a family hold on to hope?
"You don’t have to give families hope—you just have to not take that away," says Ms. Gwynne. "We can ask them how they see their child’s situation, and educate them as much as possible from the medical perspective. I can gently be there for a child’s mom or dad, and guide them through. Our job is to listen to what that family needs or wants for the child and do whatever we can to make it happen."
For Suzanne Gwynne, the big message for families is this: "You don’t have to do it alone. When you’re tired, let us be there for you; let us be your strength. Let us carry the weight of all this, and then, you guide us. We will help you as you define that need for help."
Ladybug House
Suzanne Gwynne was a nurse in the pediatric oncology unit at Fred Hutchinson Cancer Research Center when she had the idea for Ladybug House, a standalone pediatric palliative care home.
"One girl I treated was 12 and, in two years, she was only out of the hospital 72 days. Her dad stayed [in Seattle]; her mom and brother came in from Portland, Oregon, on weekends. They all sat in her hospital room, and it was so confining. I thought, these people need a place to come, even for a weekend, where they can stay and eat popcorn and watch movies together—not a motel, but a place where there are medical and other services to support them."
She also met families who traveled an even longer distance for care. In one case, a single mom journeyed from Germany to the United States with her five-year-old son who needed a bone marrow transplant.
These and other experiences led Ms. Gwynne to wonder, "what if there were a house near the hospital for families like this, who travel long distances for a child’s medical care?"
This idea of a special home offering a full range of palliative care services is now becoming a reality. When kids are in the hospital, families may be far from home and community supports, and when kids are home, they may not have access to all of the medical, emotional, and psychosocial support they need. "Ladybug House will be that bridge between home and hospital," says Ms. Gwynne.
