More than Medicine
Packard Brand of Care Encompasses Diverse Needs of Children and Their Families

BY CARYN HUBERMAN YACOWITZ

Jessica, Heather, and Jakob Zermeno enjoy playing a game in the Forever Young Zone during one of of their yearly two-week visits to Packard for Jessica's kidney transplant follow-up clinic.

Fall 2003 - What does it take to heal a child? Exceptional medical care; a highly trained, efficient, and compassionate medical staff; the best and latest technology? Well, yes -- but that's not all. At Lucile Packard Children's Hospital, the care goes far beyond these expected norms to encompass the individual needs of children and their families.

This Packard brand of care includes a wide array of in-hospital services that not only provide support to families and patients, but also are designed to include the family in a child's care. Child life services, interpreter and chaplaincy services, social services, a parent-mentor program, and a family advisory council are some of the many programs that are part of this spectrum. The result is wellsupported, well-informed families who form productive partnerships with caregivers.

To enhance trust and cooperation among families and staff, Packard has developed a unique mode of family-centered care. The program includes formal training for medical staff, parent education and advocacy, and parent-to-parent support.

"We are creating an environment in which each family can choose how to best partner with caregivers and thereby get the best care for the child," says Karen Wayman, Ph.D., director of family centered care at Packard. Wayman points out that what different families want and need is often culturally driven. For example, some families feel staff know best. Other parents want to be part of every step, she emphasizes.

Packard's commitment to this kind of care isn't just about making a child's or family's experience more staff. "This is what we think children require to heal in the best possible manner."

Sunshine Sam

Sam is the happiest person I know!" says Sarah Jones of her bubbly, active son. Sam was born with Treacher Collins Syndrome, a congenital condition in which the lower half of the face -- including jaws, cheekbones, ears, and palate -- are not fully developed. All of Sam's cognitive skills are normal.

"Twenty years ago, Sam would have been institutionalized. Packard's staff has allowed us to enjoy a normal life with Sam at home," says Jones. At 2 years old, Sam already has had two major reconstructive surgeries on his jaw and palate, as well as six other procedures. "Each time we come to the Hospital we know it won't be the last," says Jones, "yet Sam loves the staff, loves the trains. He knows all the doctors and nurses."

Sam's 5-year-old sister, Rachel, also enjoys visits to the Hospital. "Rachel is treated the same as Sam when she comes along for his clinic appointments. She is not side-lined because she isn't a patient," says Jones.

The Joneses are advocates of Packard's family-centered approach. Two-year-old Sam (far right) spent his first nine weeks in the neonatal intensive care unit and requires ongoing care.

Jones credits her nurse case manager, from patient and family support services, with making everything work while Sam was in the Neonatal Intensive Care Unit (NICU) for the first nine weeks of his life. "Your family's life still goes on even when your child is in the hospital. Our case manager organized all nursing care, equipment, and insurance. Once we could take him home, we were taught how to care for Sam. You can never make parents too prepared -- they need help."

Because of her experiences with Sam, Jones decided to become a parent-mentor in the NICU. Interested parents receive training so they can mentor other families. Jones recalls the fear she felt when Sam required a tracheotomy. "We met another family who had gone through this with their child. It changed my view of how I was going to be able to handle it. I saw them and thought ‘I can do it.' "

Spanish, Por Favor

I understand a little English, but when I come here I want complete and accurate information," explains Maria Teresa Medina through David Peschard, her translator. According to Patricia Wilder, director of patient and family support services, almost 40 percent of the families served by Packard require a translator. "There's so much I must know,"Medina continues, "and must understand."

Medina has been bringing Jazmin, her now 13- year-old daughter, to Packard for 10 years. Jazmin was born with hydrocephalus, a condition in which excessive fluids collect inside the brain ventricles causing damage. Jazmin requires extensive home care and regular clinical check-ups through Packard's general pediatrics and acute care clinics. These services, which are critical parts of Packard's continuum of care, allow the Hospital to meet the needs of any child in the community, including those without a private pediatrician or health insurance.

Jazmin is able to live at home because her mother has been trained to use the four different machines she needs to help control Jazmin's asthma, to breathe and to eat. "The staff taught me how, and I care for her under their guidance," says Medina. "I simply don't have words to describe the complete care I receive here."

Mary Medina (left) says she feels fully supported at Packard by a team that includes physicians, interpreters, nurses, and social workers. She is able to care for her daughter, Jazmin (right), at home under the guidance of Packard staff.

Social worker Kim Allard is in regular communication with Medina to help with the hardships brought on by Jazmin's constant medical needs. "I receive food vouchers when Jazmin is hospitalized and when Jazmin has required intensive care, I can stay in a room close by her free of charge," says Medina.

Packard's department of social services helps eligible patients and their families with food, lodging and transportation, insurance, and other needs.

"Staff here is never satisfied until they know I've gotten help," says Medina of the 10 years she and Jazmin have been coming to Packard. "This is where we receive all the care we need."

Learning to Trust and to Hope

Steve and Georgia Zermeno come to Packard with twin daughters Jessica and Heather and younger brother Jakob from Canyon Lake in Southern California. Jessica, who received a kidney transplant at Packard in 1998, requires two weeks of clinical visits once or twice a year.

"We'd been through so much before coming to Packard," says Steve Zermeno "Three times we were told to let this twin go -- but the staff here gave us hope. We were completely exhausted when we first arrived. We were happy the staff allowed us to just be parents for a while."

Five years later, Jessica is doing well, and the Zermenos still appreciate the care Packard offers their family. Having laundry and cooking facilities available to them during the weeks of clinical visits makes them feel welcome and cared for. "I can cook the foods for Jessica's special diet," explains Steve, a firefighter and the family chef.

Also important during these visits is the fact that Jessica, Heather, and Jakob all attend school at Packard, which is taught by teachers from the Palo Alto Unified School District. "Their teachers here make sure they don't fall behind in their studies," says Georgia Zermeno.When the children are not in classes, the whole family enjoys being creative in the Forever Young Zone. "We wish it were open more hours -- it's our sanity spot!" she says.

All facets of the Packard Brand of Care are vital to help families be informed, active participants in their children's ongoing medical treatment -- a partnership that leads to improved care for critically-ill children. From parent mentoring training, to translation services, to food vouchers, to staffing the Forever Young Zone, these programs are an integral part of what makes Packard a place of healing and hope.

	The Campaign The many services that make up Packard's high touch Brand of Care are vital to patients and families, yet few are covered by insurance or receive any clinical revenue. For funding, these programs rely on community donations. Through the Campaign for Lucile Packard Children's Hospital, donors have chosen to support the Packard Brand of Care with gifts to areas such as child life services, palliative care, emergency services, pain management, chaplaincy services and general pediatrics. Gifts such as these are integral to Packard mission of providing the highest quality care that is both child-friendly and family-centered. Lead donors include: Davies Family Directorship for Pediatric Emergency Medicine Charles L. Dostal Jr. Chaplaincy Kimball Clinical Endowment for Pain Management John A. Kriewall and Elizabeth A. Haehl Directorship of Palliative Care SUN Microsystems - Recreation Therapy and Palliative Care Mary Zelencik Endowment for Recreation Therapy Gift Opportunities Named Endowed Funds for any specific or general Packard Brand of Care program can be endowed for a minimum of $250,000. For more information, please call (650) 498-7641 or e-mail campaign@lpfch.org.