Published on October 18, 2018
“It’s hard to convey how much I laughed with our doctor and nurse, how much delight they took in Kate being silly. It couldn’t change the outcome, but the process was so much more powerful having hospice care. It was all very much about more life, even though, for my children, more life was not going to be a long life.”
– Alison Kirk, mother of Caroline (9) and Kate (13) who passed under Alive’s care.
Families with young children in hospice care have special needs. Each situation and child are unique. This year Alive conducted focus groups with physicians and families to discuss these issues and receive recommendations for enhanced care delivery. We are incredibly grateful for this level of community engagement.
Leslie Baker, RN, CHPCA, Administrator of Homecare at Alive, leads the pediatric team at Alive, which comprises two dedicated nurses and a doctor (Dr. Peter Swarr) in addition to the rest of the hospice interdisciplinary team.
Baker has been providing pediatric care to hospice families for more than 20 years. She says the most important thing to remember is that every family and child is unique.
“We provide individualized care. Our goal is to be the source of strength and education for each family and to address their needs in the way that works best for them,” Baker says.
Dr. Swarr directs the medical care of Alive’s pediatric patients, acting as a liaison between Alive and outside providers to ensure that families receive seamless and comprehensive care.
“Our team is extremely adept at comforting and alleviating all types of physical and emotional pain. We walk the journey with them every step of the way,” Dr. Swarr explains.
Preparing for the death of a child may be the greatest challenge a parent will ever have to face. Dedicated pediatric nurse Kellye Byrn wants families to know they are not alone and not without hope.
“Choosing hospice does not mean ‘giving up hope.’ It may mean refocusing what our hopes are, but we never lose hope,” says Byrn.
With the help of Alive’s expert and compassionate pediatric team, families can focus on what matters most, being together.