A special room, and a hospital program, for profoundly ill kids and their families

“Here’s our Jeffrey,” said Tarassa Humphrey, proudly pointing to a photo of her only son. In it, Jeffrey’s floating happily in a swimming pool, held up by a therapist, a huge smile spread across his face. The photo, carefully laminated by strips of clear tape to preserve its shape, is worn from being carried in Tarassa’s purse for so long after Jeffrey’s passing in 2009. He was only six years old.

The Humphreys and several other families who had lost a child to profound illnesses gathered with staff last week at Children’s Hospital & Research Institute in Oakland for the launch of the hospital’s new Pediatric Palliative Care program.

The opening of a Bay Area hospital-based facility was “the answer to our prayers,”  Tarassa Humphrey said — and had it been available to them as Jeffrey was nearing the end of his life, they added, they would have used it to care for him closer to their home in Suisun City. Born with cerebral palsy and afflicted with glaucoma, severe seizures, and other complications, Jeffrey spent his final days at the George Marks Children’s House in San Leandro, which provided the palliative care he and his parents needed.

“To have Jeffrey free of all machines, free of being poked, just free to die peacefully– that’s all we ever wanted for him,” Tarassa Humphrey said, taking a break in the cafeteria located down the hall from the new family suite that serves as the physical center of the new Children’s program.  Palliative care, she said, is “what we would like for other parents in that situation — just to have that time alone with their child before, during, and after their end-of-life process.”

Palliative care focuses on providing the best quality of life for people with serious illnesses, whether or not there is hope for a cure. It differs from hospice care in that the patient does not need to have a diagnosis of likely death within six months or less. Palliative care is appropriate at any age or any stage in a serious illness, even if patients are expected to recover fully. A doctor’s referral is all families need if they wish to stay in the Reflection Room, as the new Children’s family suite is called; or participate in special family-centered care or consultation services that offer a wide range of experts, including music and art therapists.

A mural painted by the mother of a terminally ill child, who was a patient at Children’s, lines the wall of the bedroom in the Reflection Room. 

“When I came in 12 years ago we had a huge feat ahead of us to get the word out about what palliative care is,” said Claire Vesely, the nurse who coordinates the Palliative Care Program coordinator for Children’s.  The concept has only recently gained recognition as an important service to families in the last ten years or so. In 2006, the passage of the Nick Snow Children’s Hospice & Palliative Act (AB 1745), co-authored by former Assembly member Wilma Chan (D-Oakland), former Senate President Pro Tempore Don Perata (D-Alameda), and former Sen. Deborah Ortiz (D-Sacramento), allowed children enrolled in Medi-Cal to receive funded palliative care at home. The Humphreys are among other families and hospital staff who have gone to Sacramento in years to share their story and speak to the legislature on the importance of supporting palliative care programs statewide.

Strong support also came from the End of Life Committee, a group of about a dozen Children’s Hospital and George Marks Children’s House staff, who have been working for years to start a palliative program at the hospital. “I said, ‘If I ever win the lottery, I’m going to do something to help these families,'” said Dr. Barbara Beach, a committee member and pediatric oncologist who has worked at Children’s Hospital for more than 30 years.

In 2004, Beach co-founded the George Marks Children House in San Leandro, the center where where Jeffrey Jr. finally died three years ago. “The last thing you want is to be in a hospital environment,” said Jeffrey Humphrey, the boy’s father.  Jeffrey Jr. had spent most of his life in a sterile environment already, Humphrey said; what they wanted for the final days was something that was medically safe, but felt more like home.

“It was clear we could do better,” Beach said. “It’s just fabulous that this program is here now, for families who can’t leave the hospital.”

Last Tuesday, after years of work, Children’s Hospital CEO Bert Lubin cut the Reflection Room Door’s ribbon to mark the official launch of the program – although more than a dozen families have already been invited to make use of it. “We were so appreciative that the room existed, at the time there were few decorations or comfortable seating yet it was still a haven,” said Jane Sbragia, grandmother to Gino Edward Sbragia, who was four months old when he died of SIDS (Sudden Infant Death Syndrome) in the Reflection Room this June. “The reflection room was actually a series of rooms which allowed our baby’s mother and father that most intimate of a time, holding our baby as he left his earthly body.”

The Reflection Room is a suite containing four rooms in total, each designed for the particular needs of families who may be spending their last days with their children. There is a refrigerator, to be stocked with snacks.  There’s a mural in the bedroom of a mountain range with butterflies flying overhead, painted by the mother of a terminally ill child who was a patient at Children’s.  There are flat screen televisions, cozy couches, kid-sized chairs, and beds that don’t look much like hospital beds at all, with yellow embroidered quilts donned over them.

Members of the Children’s Hospital End of Life committee gather in the Reflection Room – the result of years of hard work and planning a palliative care program finally realized.

Vesely has seen a variety of ways families choose to use the private space.

“Some families come in, they turn all the TVs on, they have music going,” she said.  “Others have a religious or cultural ritual we can accommodate, because there’s privacy and space.” Vesely said family members are often thankful to be able to have prolonged contact with their young relatives who are often monitored in a sterile environment. “When you go to the NICU (Neonatal Intensive Care Unit) there’s a dozen babies in a room with curtains, so there’s zero privacy,” she said.

According to Vesely, Children’s Hospital has about 100 deaths a year.  Another planned use of the Reflection Room is for helping families cope when that happens, too:  even after their children have died in the hospital, families from any department in the hospital can ask to have their children moved to this private space so that they can grieve for them there in a more homelike setting, for some an important part in the healing process.

Among the names of donors honored at the Palliative Care launch, was a group called Friends in Memory of Gino Edward Sbragia.  Adam and Kathy Sbragia, of Healdsburg, attended the opening and said they had asked their community for nothing but donations to the Reflection Room after Gino Edward died.

“I look forward to seeing the room where I know his name card will be on his chair,” said Adam, his voice quivering with emotion as he remembered his last moments with his son. “The staff let Kathy and me hold him without tubes. They let us take him outside and see the sun one last time …” said Adam, trailing off as people in the room struggled to remain dry-eyed.

“Its all about the little things,” said Vesely. “It doesn’t matter at that point you don’t even have to say anything. Just being there as a resource for a family, they’re happy that they can focus on being the parents – that’s the biggest thing.”

Donations to the Palliative Care program can be made online at www.chofoundation.org/give2care or by calling (510) 428-3814.