Donors light up ill children’s lives

The brilliant glow of this year’s Union Square Christmas tree benefits UCSF hospital

For many, the holiday season in San Francisco is filled with warmth and cheer. Venture downtown, where rosy-cheeked visitors amble along Powell and Stockton Streets hunting for after-Christmas bargains, store windows are dressed in wreathes with red-velvet bows, and at the center of it all, an 85-foot-tall fir tree stands illuminated with 65,000 twinkling lights in Union Square.

For the thousands who pass the Macy’s holiday tree during this time, many probably don’t realize that each twinkling light represents a $10 donation to UCSF Children’s Hospital’s palliative program, which provides care to children facing life-threatening illnesses or those in need of end-of-life care.

At press time, the hospital has received approximately $175,000 from this year’s tree lighting — a major source in the program’s funding.

“Macy’s is one of the biggest, but we have many other donors who support us year after year,” said Robin Kramer, a trained pediatric oncology nurse who is the Compass Care’s program director. “The tree lighting helps us with a significant portion of our budget.”

The program, which Kramer launched at UCSF in November 2001, is run by a group of doctors, nurses, social workers and chaplains, who are trained to provide leadership to the members of the Children’s hospital’s specialized departments.

“Many people equate palliative with hospice care — but palliative care is a focus on quality of life and relief of suffering and care coordination and communication with families — especially when there are so many sub-specialists dealing with a child’s care,” Kramer said. “We care for many of these chronically-ill children for months and years — and we also help parents to transition back into a community after their child dies.”

“What we have found to be effective is to have resource staff in each unit — who have a special interest and help them get special training in palliative care,” Kramer said. “And then we have a core group — 10 to 12 active team members that provide compass care leadership. It really fits our model of helping individual staff developing skill and expertise. It’s a philosophy and approach to care.”

“We try to emphasize that we will always try to care for a child — if that goal isn’t possible, we will do our best to prolong their lives,” she added.

Every year UCSF Children’s Hospital cares for thousands of children; however, approximately 250 families experience either the death of their child or pregnancy loss. This number, Kramer said, doesn’t capture the hundreds of other children that have chronic life-threatening illnesses that the hospital’s Compass Care program serves.

“Many hospitals have a palliative consult service — we take a different approach in that we try to integrate palliative care so that it seems seamless — so we provide support in the team that is already caring for the child — for the child’s medical condition and care plan.”

“We are seeing wonderful signs of that happening,” she added. “The staff here is truly amazing and dedicated — they are so committed to enhancing their practice.”

Kramer said one of the cornerstones of the program is education — from providing medical providers with symptom management skill to running programsin music therapy, infant massage and knitting.

“We have checklists in terms of different pieces of care,” Kramer said. “From spiritual care to providing families with comfort care baskets with toys, slipper socks. Those are the kinds of resources that we put in place.”

“We also have memory boxes, and we do memory-making keepsakes for a family — such as impressions of the hand or foot or a lock of hair. Sometimes siblings create artwork or write letters — the team who takes care of them brings these resources to the family.”

“Maintaining hope is also a tool,” Kramer added. “Some children have a cure.”

“We try to emphasize that we will always try to care for a child. If that goal isn’t possible, we will do our best to prolong their lives,” Kramer said. “When it becomes apparent that a child is actively dying — then we may say our emphasis is that the child die as comfortable as possible.”

Supporting UCSF

Children’s Hospital’s Compass Care program

The UCSF Children’s hospital’s palliative care program is support by the UCSF Medical Center and private donors, said Robin Kramer, the Compass Care program director.

For those interested in making an end-of-year, tax-deductible donation to this program, it’s not too late. Proceeds from donations go directly to programs that support the children and their families faced with life-threatening illnesses. To make a donation:

» Call UCSF at (888) 689-8273

» Visit www.ucsfhealth.org/secure/tree.html

» Send a check to: Macy’s Annual Tree Lighting, UCSF Children’s Hospital, 500 Parnassus Ave., Room MU 529-E, San Francisco, CA 94143-0296

Serving women with high-risk pregnancies and children living with chronic life-limiting conditions where the prognosis is uncertain, the Compass Care program is a free-of-charge service to all patients and families.

For those interested in volunteering, or to learn more about the program, visit www.ucsfhealth.org/childrens/special/c/71361.html.

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