The Friends of Children’s Hospital, an organization of volunteers who support Monroe Carell Jr. Children’s Hospital at Vanderbilt, has made its largest single gift — $1 million over three years — to be split between two Children’s Hospital programs: the Program for Children with Medically Complex Needs and Pediatric Cancer.
The Friends organization selected the two areas — one relatively new and the other well established — as the focus of their gift because they felt that’s where they could most directly impact patient and family care.
Navigating a complex system
The three-year-old Complex Care program serves a group of Children’s Hospital patients who have a longstanding medical problem involving multiple systems, yet don’t have a specific program to oversee their care, as might be the case in children with cancer, cystic fibrosis or other well-defined chronic conditions.
These children, who see several subspecialists, may be dependent on medical technology such as feeding or tracheostomy tubes or ventilators, are leading longer lives due to medical advances. Most are characterized by high health care use and functional limitations.
The Complex Care team includes two physicians, a nurse practitioner, two nurses, a program coordinator and a shared social worker, nutritionist and pharmacist.
The Friends gift will allow the program to hire another nurse practitioner and a part-time case manager to take care of the growing number of patients and help their families navigate the health care system.
The program is already near capacity, with about 270 children enrolled.
“There have been many advances to help these children survive and we have a responsibility to take care of them,” said David Hall, M.D., professor of Clinical Pediatrics and director of the program.
Children enrolled in the Complex Care program may require intensive medical management for years and their care is often confusing and frustrating for their families, as well as for time-stressed medical providers.
Although specialists can treat the problems that relate to their specialty, it can be difficult for parents to find a provider who is willing to take ownership and provide oversight for all of their problems.
“These are children who easily fall through the cracks in our health care system,” Hall said. “The parent, the expert on their child, can end up directing the overall care because nobody else is doing it. Although parents are certainly the experts on their child, they don’t have the medical training to assume this role effectively. And although many primary care providers do the best they can to oversee care, in many cases they do not have the time or resources to serve in this role for the sickest patients.”
In addition, the schedules of attending physicians and residents don’t always provide for optimal continuity of care in highly complex cases. And medications and procedures to correct one problem can cause adverse effects in another.
Care for the medically complex patient has become more tailored and less frustrating for families thanks to the new program, part of the Division of Hospital Medicine. Hall directed a similar program at Cincinnati Children’s Hospital before coming to Vanderbilt.
To be eligible for the program the child must be a patient of at least three subspecialty groups and be admitted at least twice to the hospital or once to the intensive care unit in the year prior to enrollment. Some exceptions may be made. The Complex Care team partners with the child’s primary care provider to supplement their care and help families navigate through complicated care plans.
The program is showing strong results, reducing the amount of time children have to spend in the hospital. Hall collected data that compares hospital stays for those in the Complex Care program six months before enrollment to six months after. Days in the hospital decreased 50 percent, admissions decreased 33 percent and readmissions within seven days decreased 50 percent.
“We’re here because of the good graces of Children’s Hospital. We’re grateful for the support of Children’s Hospital and the Friends of Children’s Hospital for allowing us to expand. This is the most gratifying thing I’ve ever done in my career,” Hall said.
Making the Most Impact
The 3,000-member Friends organization, established in 1972, is no stranger to making gifts that will have a significant impact on patients and families at Children’s Hospital. In the spring of 2010 the Friends organization funded the Friends Prematurity Prevention Endowment and made a significant gift to support the expansion of Children’s Hospital through the Growing to New Heights Campaign.
Friends’ president Tricia Ericson said the organization’s leaders met with Children’s Hospital’s leadership last summer and asked where their gift could make the most impact. They were given several options, but the group ultimately chose the Complex Care program and Pediatric Cancer Care as the beneficiaries of their latest pledge because they wanted to make sure that their gift impacted patients and families directly.
“We wanted to make sure that the circumstances these families are facing are more bearable,” she said.
The Friends’ mission is to impact the hospital through fundraising, patient service and outreach. Fundraising events include An Evening with Friends in the fall; the Holiday Project; and Sunday with Friends and Friends & Fashion in the spring.
“We raise money through things like ticket sales and auction items, and it’s a strong community effort. I can’t say enough about the impact that Monroe Carell Jr. Children’s Hospital at Vanderbilt is making on generations of families,” she said.
Ericson, the mother of 13-year-old Hannah and 9-year-old Ava, who have needed the services of Children’s Hospital in the past, said that her family’s association with Children’s Hospital began 43 years ago with the birth of her husband, Eric. He was born prematurely and taken care of in the Children’s Neonatal Intensive Care Unit.
Eric’s mother, Janice Wendell, became involved with Children’s Hospital as a volunteer and served as the Children’s Hospital Board chair in 1996-97. Now Eric is a member of the hospital’s advisory board.
“I wanted to get involved too. I’m passionate about children and wanted to give back.”
Cancer and Mental Health
The Pediatric Cancer program at Children’s Hospital will use their portion of the Friends’ gift to add dedicated psychological services to the comprehensive cancer care offered to the region’s youngest cancer patients.
With the help of the Friends’ gift, they are adding a program coordinator and a psychologist who will help patients and their families work through the impact of the child’s illness on family life and school.
“Our patients and families are dealing with life-threatening illnesses,” said Debra Friedman, M.D., director of Pediatric Hematology/Oncology, associate professor of Pediatrics and E. Bronson Ingram Professor of Pediatric Oncology. “It’s not just the illness itself, but the impact of the illness on their entire life, which can get turned upside down. With the addition of the behavioral health component, we will offer a more holistic approach to helping them with their challenges.”
It’s well documented that children and families have issues that require assistance by mental health professionals during and after cancer treatment, Friedman said.
But services can be hard to find, both at an academic medical center, like Vanderbilt, or in the community. Finding professionals who really understand the specific challenges for the family is key, Friedman said.
Vanderbilt-Ingram Cancer Center (VICC) is the only National Cancer Institute-designated Comprehensive Cancer Center in Tennessee that treats both pediatric and adult cancers.
Children’s Hospital and VICC work closely together to provide exceptional care to these children who are living with, through and after a diagnosis of cancer.
More than 15,700 children and teens in the U.S. were diagnosed with cancer last year. In the past 20 years, the cure rate for childhood cancers has more than doubled, increasing from approximately 30 percent to 80 percent.
Despite these advances, cancer is the second leading cause of death in children, after trauma, and survivors have many ongoing health concerns, including depression and anxiety, which are common in parents as well, especially mothers.
“Cancer treatment is not kind and gentle by any stretch of the imagination,” Friedman said. “It makes children very ill and that can be exhausting for them and for their parents. Even after therapy, both children and their mothers have a higher incidence of post-traumatic stress disorder than the general population – the stress being the cancer and its treatment.”
Friedman said beyond providing behavioral therapy for cancer patients, the new psychologist and the program coordinator will work with families to find additional needed resources in the community.
“Those services are also very hard for families to find on their own.”
Friedman said offering behavioral care has been on the Pediatric Cancer program’s wish list for some time.
“This is something we’ve wanted to do for quite a while. Up until now we’ve utilized social workers, developmental pediatricians, psychiatrists and psychologists at Vanderbilt. We’ve cobbled together resources but haven’t had anyone dedicated to this population of patients.
“This is the kind of program that needs a fairly substantial upfront investment to get it going. This gives us what we need to go forward and we’re so grateful to the Friends’ organization for providing it,” Friedman said.