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Case management is a dynamic part of patient care, serving as a communication link for the interdisciplinary team and an advocate for the patient in a complex, high-technology world. I was privileged to be the case manager of a pilot palliative care team project at Children’s Hospital in Omaha, Neb.
I was somewhat familiar with the emerging world of palliative care in pediatrics, but this was new ground. My initial work included research, learning about the grassroots effort at the hospital, meetings, planning, approvals and team-building. From this we formed the Hand in Hand team, which consists of a social work coordinator, medical director, chaplain, child life specialist and case manager.
One of the first children helped by Hand in Hand was an unforgettable 11-year-old adopted boy, Lane, who had Down’s syndrome. He admitted to the pediatric intensive care unit with flu-like symptoms and septic shock. He was diagnosed with Norwalk virus and influenza. Lane remained critically ill for days with the complication of infarction to his spinal cord. This left him ventilator-dependent, a quadriplegic and led to the amputation of his right upper limb.
Our team began to walk “hand in hand” with Lane’s family, which tested my case management skills to ensure he would receive the best outcome under difficult circumstances.
The Hand in Hand team helped facilitate weekly parent conferences where we discussed goals and quality-of-life needs for Lane. His parents clearly articulated their goal: Get Lane back home to live as normally as possible. Meeting these goals required interdisciplinary facilitation, planning, advocating, collaboration and critical thinking.
Since Lane was a pediatric patient with ventilator dependency, finding the best acute rehabilitation bed proved difficult. Lane was transitioned to an acute rehabilitation hospital in Minneapolis, Minn., for four weeks.
While Lane was in acute rehabilitation, we facilitated home equipment set-up, home readiness and waiver implementation. Lane returned to Children’s for continuation of parent training, home-care readiness, private-duty nurse training and coordination of this complex case.
A community care conference was held for Lane and his family. In attendance were the Hand in Hand team, teachers, service coordinator, DME company, home nurses, pastor, Sunday school teacher, OT rehabilitation specialist, and the entire interdisciplinary team from Children’s. Lane, sporting a new racing shirt, was able to attend even though he required tracheostomy and ventilator support. His bright smile and wink to the team brought everyone to tears. When one person said, “I’m not sure how we can do that,” someone else answered assuredly, “We can.” Collaboration united us as we addressed Lane’s individualized care needs while keeping the family’s goal in mind.
Lane was home for 11 days but returned to Children’s with a fever and urinary tract infection. He passed away very suddenly.
With the success of the pilot program, we have implemented Hand in Hand hospital-wide. Each new case challenges me to reach high in the practice of case management to meet the unique needs of pediatric patients such as Lane.
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