One mother shares why the palliative care program has become a staple in her whole family’s care plan
Shayden, 14 – photo courtesy of Hudson family
By the time Jodi Kelley and Ken Hudson’s son Shayden was first admitted to Lucile Packard Children’s Hospital Stanford in 2009, he was critically ill. Shayden had spent the previous 12 months in and out of two different hospitals undergoing multiple surgeries and procedures, almost dying at one point.
Fourteen-year-old Shayden, who is nonverbal and uses a wheelchair, was born with lissencephaly, or a “smooth brain,” which is a rare brain malformation characterized by the absence of normal folds in the cerebral cortex. Children born with this condition may experience developmental delays, seizures and abnormal muscle tone and may have difficulty eating and swallowing. The outlook of individuals born with lissencephaly can vary significantly. Some individuals only reach the developmental capability of a 3- to 5-month-old infant, while others may have close to normal intelligence and development.
When Shayden was 6 years old, he underwent surgery to insert a feeding tube that would provide him with supplemental nutrition, as he was not growing and gaining weight at the expected rate for a child his age. Immediately following the surgery, Shayden experienced multiple complications, which led to more surgeries and ultimately resulted in a severe decline in his health and physical abilities. At this time, it was suggested that Shayden be transferred to Packard Children’s.
As Shayden was being evaluated and treated at Packard Children’s for his complex condition, the palliative care team was brought in. Jodi panicked, thinking the medical team wasn’t telling her everything about her son’s condition and fearing that he was dying. She quickly learned that palliative care wasn’t just hospice care and that the team’s priority was Shayden’s quality of life, not his death.
“I first spoke with the chaplain from the palliative care program, and I realized palliative care doesn’t mean that your child is going to die today or tomorrow or in 6 months,” Jodi said. “The team is there to make sure your child will have the best quality of life for however short or long a time he might have. It doesn’t have to be a terminal condition for the palliative care team to become involved.”
Barbara Sourkes, PhD, Kriewall-Haehl director of the Pediatric Palliative Care program, said it remains a common misconception that palliative care only encompasses end-of-life or hospice care.
“Most of our consultations with families are around decision-making in the present and into the future, establishing goals of care and ensuring that children are comfortable,” said Sourkes. “Regardless of what treatment pathway the child is on, it’s crucial that his or her symptoms are managed effectively.”
Jodi took advantage of all that the palliative care program had to offer. The team not only focused on Shayden’s well-being but on the family as a whole. Jodi was at Shayden’s bedside for months while her husband cared for Shayden’s twin brother and older brother at their home in San Jose.
“The palliative care team was a godsend. They really listened to me and valued my input,” Jodi said.
“They were also a very big help to my family, including my other boys. Dr. Sourkes constantly reminded me that I needed to balance my time between the hospital and home.”
Palliative care focuses on quality of life
Packard Children’s palliative care program was established in 2001. While it is involved in education, research and advocacy, the clinical program is at its core. The 14-person interdisciplinary team includes individuals specializing in pediatrics, nursing, psychology, social work, chaplaincy, child life, education and case management. In addition to decision-making and symptom management, the team assists in coordinating the patient’s care and offers psychological guidance to the parents, especially regarding the impact of the illness on the child and his or her healthy siblings. The palliative team also provides consultation in situations where there is conflict between the health care goals of the family and the medical team, and they offer support for the staff who care for these vulnerable children and families. The bereavement program, directed by Nancy Contro, MSW, is a crucial component and provides continuity of care and resources for families who have lost a child.
Shayden – photo courtesy of Hudson family
Sourkes said the new model of pediatric palliative care is “concurrent care,” meaning children living with a complex chronic or life-threatening illness may be treated on two parallel tracks at the same time. On one track, the medical team focuses on achieving a cure or prolonging life with disease-related treatment. On the other track, the palliative care team focuses on decision-making, symptom management and additional support.
Shayden’s story is representative of many children who have been helped by the palliative care team at Packard Children’s. The team consults on patients with a wide spectrum of diagnoses, including genetic disorders, neurological conditions, cancer, heart and lung diseases, and complications from extreme prematurity.
“There are treatments for children with diseases that are not necessarily curative but which keep children alive for longer periods of time,” said Harvey Cohen, MD, PhD, a pediatric oncologist and the Katie and Paul Dougherty medical director for the palliative care program. “As with Shayden, we often follow our patients for years and years. Although these children may never be cured of their problem, they still live for a significant period of time. So we work closely with the primary team that cares for them on an ongoing basis.”
Although Shayden is back in school and is currently growing at a healthy rate, the feeding tube that he relies on for nutrition can cause liver failure with prolonged use. Jodi acknowledges she isn’t certain what the future holds for her son. “Shayden’s condition will probably deteriorate at some point, but I hope he will live for as long as he’s enjoying it,” she said. So for now, they are taking it one day at a time and focusing on the quality of his life, not the length of it.
“It’s hard not knowing how much time you will have with your child and what life will be like when they go. We don’t want to lose him. Our family will be forever changed.”
Despite the uncertainty, Jodi is comforted by the fact that the palliative care team will be there for as long as her family needs them, guiding them through tough decisions and providing emotional support for the entire family.
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