Meet the Nurse Who's Changing Palliative Care As We Know It
By Charlene Platon, MS, RN, FNP-BC
Suzanne Gwynn, a critical care nurse from Seattle, has met many patients throughout her career. Several times while caring for these patients, she's thought, “There has to be a better way.”
One of those moments was with Junior, a 5-year-old bone marrow transplant patient.
While in the hospital, Junior’s family visited often, traveling far from their home to stay with him. When Junior passed, his family wanted to bring him home to say their goodbyes.
Junior’s parents didn’t want to say goodbye in the hospital -- they wanted a better experience. Having their last moments with their beloved child in that environment would just feel too detached and rushed.
Suzanne carried Junior’s body out and placed him on the laps of his family members as they sat in their truck. She watched as they drove away for the three-hour trip home, wishing she could have done something more for them.
“That’s how I’ve spent my career: trying to figure out ways to make better goodbyes,” Suzanne said. “These kids, these families, deserve better.”
Making Moments Count
Working in oncology and hospice for over 30 years, Suzanne has seen cases like Junior's far too often. She has seen the heartbreaking effects that terminal illnesses have, not only on the patient but also on the patient’s family.
After several conversations with mothers of children who have died from devastating illnesses, she noticed a unifying theme:
“They felt like they were robbed those last hours, days, weeks [with their child] because they were busy being a caregiver,” Suzanne explained. “They didn't have time to just love their family, love their child and make memories because they were physically caring for them.”
Rather than focusing on the sadness of death, Suzanne has become an advocate and pioneer for hope. And that’s where her Ladybug House Initiative comes in.
“It isn’t about building a hospice for end-of-life support,” Suzanne said. “It’s about building a home for life support for these families. It’s about the quality of life and making memories.”
A Home Away From Home
Pediatric palliative care often takes place in the cold, clinical environment of a hospital. But Suzanne is reimagining all of that.
Ladybug House is a nonprofit organization based in Seattle, Washington, dedicated to providing relief and refuge for children, adolescents, and young adults with terminal illnesses, as well as support for their families.
But it’s much more than an organization – it’s a home away from home. Ladybug House’s goal is to build Seattle’s first palliative care home for children, equipped with 12 family suites and comprehensive palliative care services, including pediatric end-of-life care, respite care, and family lodging.
Motivation and A Mission
Although Suzanne’s goals seem ambitious, her experience with Junior, his family and other patients like him keep her motivated.
One such patient was Bill, who spent 285 days in the hospital while battling leukemia. Despite all the hardships he faced, he inspired Suzanne with his optimism and perseverance. He would tell her, “Quitting is not an option.”
“We need people to help tell stories. We need to bring these stories to light, to bring the need to light,” Suzanne urged.
Beyond spreading awareness, we can also push for legislative action by lobbying and advocating for beneficial hospice policies for children in the United States. As Ladybug House’s mission states, “If we cannot add days to the life of a child, we will add life to their days.”
Suzanne is a nurse on a mission to make Ladybug House a reality. Let’s join her in being pioneers of hope by turning her ideas -- and our own -- into realities.
“Even if it would help one family, it would be worth it,” Suzanne said.
Next Up: True Stories From The NICU
Charlene Platon, MS, RN, FNP-BC is a family nurse practitioner, emerging nurse leader, blogger, and aspiring podcaster. Her coworkers dub her the “techie nurse.” Reach her on Twitter @CharlenePlaton.
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