“It is precisely in the midst of great pain and suffering
where one finds the greatest examples of compassion in action.”
Jon Kabat-Zinn, Ph.D., author and founder of the
Center for Mindfulness in Medicine, Health Care and Society
Shariya Johnson is just like any other bright-eyed 15-month old girl. She laughs, she smiles, she likes to play with her toys. However, little Shariya also has a struggle ahead of her that most children do not have to contend with – a rare mitochondrial disorder that affects muscle and motor function development.
Shariya’s grandmother, Larhonda Johnson of Magee, Mississippi, reflects: “The day after she turned three months old, she just started shutting down. Everything just shut down. She sat looking at me and she couldn’t move. She couldn’t do anything. We rushed her to the doctor and he said it was bad. He arranged for a chopper to get her to Batson Hospital for Children in Jackson. Shariya was in intensive care for two months and two weeks. It was then that we were told the extent of her condition.”
Bewildered and grieving, the family faced a challenging reality, and many questions. What would be required medically? How would this affect them financially? How would they be able to care for Shariya at home while juggling other demands of daily life? How would the situation impact their family as a whole? Where could they turn for support?
Answering these kinds of questions, offering families the support they need, and providing care to medically challenged children – each step of the way – is the focus and mission of the Pediatric Pain and Palliative Medicine Program at Batson Hospital for Children. For the Johnson family – and numerous families like them – specialized care of this kind makes all the difference.
“Everyone has been so helpful. We have received a lot of emotional support and guidance about Shariya’s condition,” says Johnson. “I’m happy to say she is making some progress now. We have gone from her not being able to hold her head up or to be able to turn over, and now she can do both of those things. It is just going to take time. The situation is reversible, but she could be three years old before she is able to crawl and walk. Naturally, this has been terribly hard for all of us. We have a long road ahead of us, but thanks to the palliative care team, we’re going to make it.”
THE PALLIATIVE CARE TEAM
Twenty four hours a day, seven days a week, members of the pediatric palliative care team undertake one of the most challenging and rewarding tasks in modern medicine: managing the pain, minimizing the suffering, and enhancing the quality of life for children facing long-term battles with chronic, complex, and life-threatening illnesses. Dr. Rick Boyte, M.D., M.A., Professor of Pediatrics at University of Mississippi Medical Center, leads the team.
Before launching the pediatric palliative care program in July of 2009, Boyte practiced pediatric critical care. In time, he began to seek out educational opportunities that would enrich his growing interest in palliative and end of life care; this included study in the Harvard Medical School Program in Palliative Care Education and Practice, and gaining certification through the American Board of Medical Specialties in Hospice and Palliative Medicine. Now in his seventeenth year with Batson Hospital for Children, Boyte brings a unique perspective to his role.
“When I was an ICU doctor,” Boyte recalls, “my singular focus was on ensuring that kids left the ICU alive. A child would make it through a critical illness or situation, transfer out of the ICU, and, for the most part, my job was done. In pediatric palliative care, the goals and daily demands are very different from those in critical care. We manage what are often long-term, painful situations – children with a broad spectrum of complex, chronic illnesses, and a wide range of possible outcomes. Naturally, circumstances such as these have an enormous impact on the family. Our task, then, is to get in as early as possible, to meet the families and the children, and see what we can do to support all of them through the experience.”
As one listens to Dr. Boyte and his colleagues speak about palliative care, it is easy to discern the passion they feel for the work they do and the roles they play. Nonetheless, they are also quick to emphasize a vital fact, which they are reminded of each day: they can’t accomplish everything alone.
“There is a lot more that goes into a person’s distress and suffering than just physical pain or symptoms such as nausea or vomiting,” Boyte points out. “There is also spiritual pain. There is social pain for the family as they sort through how circumstances will affect their finances, their marriage, other children in the family, and so on. These things aren’t tended to unless they are made a priority. In palliative medicine, we make it a priority, and the range of different needs these children and families have demands a range of creative responses, different resources, and support.”
Jacqueline “Jackie” Carrillo, a 29-year veteran nurse (six of which have been dedicated to pediatric medicine), nursing school instructor, and the only full-time staff member on the core team, helped Boyte to launch the palliative care program. Since its inception in July 2009, close to 200 children have been seen as palliative care consults. Additionally, eight to ten children with chronic, complex conditions that require prolonged hospitalizations are monitored at any given time.
“As practitioners of pediatric palliative care, we try to address the broad range of physical, psychosocial, and spiritual needs that a patient and their family may have. However, no one individual can do all of it,” Carrillo emphasizes. “Effective palliative care requires a holistic approach, and it is imperative to have a solid interdisciplinary team. For this reason, we [the core team] must draw upon the expertise of chaplains, counselors, child life specialists, respiratory therapists, art therapists, pharmacists, teachers, and others at Batson. The difficulty is that most of the talented people we rely upon to help make the resources of palliative care comprehensive also juggle duties in other parts of the hospital. As we move forward, we really hope to expand the number of full-time staff dedicated solely to pediatric palliative care.”
Another important core member of the palliative care team is certified nurse practitioner Jodee Newell. Having worked with Boyte in the pediatric ICU for ten years, medical care for children has always been her focus. However, providing care for children with complex, chronic, and terminal medical conditions became even more personal for her in 2006. Newell’s daughter, Taylor, was born with Lissencephaly – a severe neuromigrational disorder that prevents healthy brain development.
“Basically, with Lissencephaly, Taylor’s brain has not developed beyond that of a 5-month old infant.” Newell explains. “She is now seven years old.” Like many of the children who require palliative care at Batson Hospital for Children, Taylor faces challenging conditions of physical and mental impairment, a requirement for specialized care at home, and an uncertain outcome.
Dealing with many of the same challenges faced by other parents of severely disabled children has given Newell an unparalleled perspective in her role as a nurse on the palliative care team: “Quite simply, Taylor’s presence in my life has helped me as an advocate for special needs populations. My own situation has also given me insight into how to support the parents. Parents of the children we work with in palliative care are stretched thin. They really are the unsung heroes. If there is a silver lining to all of this with my own daughter, it is that I’ve noticed a wall comes down for parents when they find out that I, too, am dealing with many of the same kinds of issues with my child at home. They immediately know I am an ally for them.”
THE FUTURE OF PEDIATRIC PALLIATIVE CARE
Being a support to children and families dealing with long-term, complex medical situations is at the heart of everything the Pediatric Pain and Palliative Medicine Program at Batson Hospital for Children does. However, despite a deep desire to fulfill this important mission, the pediatric palliative care team faces some real obstacles in being able to assist specific populations. One of these populations is ventilator dependent children.
“As it stands,” Dr. Boyte points out, “the state of Mississippi does not have a dedicated pediatric long-term care facility for children. For those children whose families are not able to care for them at home, the weight of this falls on the hospital, or the children are forced to go out of state, away from their families. Likewise, the state does not have a comprehensive home ventilation program to train those parents who are able to care for a terminally impaired child at home. Many of them have to travel out-of-state to get that training. We are aware of these challenges and hope to address them in the future. Developing a full-fledged home ventilator program, for instance, would ease some of the burden on both the hospital and on parents.”
Palliative care team member Jackie Carrillo adds, “With Batson operating at full capacity since November 2010, and some of our ventilator dependent patients living full-time in the hospital for seven or more years, the dynamic needs of these special kids are all too clear. This is why the program was established. There is much to do, and much that still needs to happen, but we’re just getting started and eager to expand this mission. None of us is short on inspiration. We have all had rewarding careers in medicine, but serving these special children in the palliative care program is the most rewarding.”
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