New Bridges program, supported by Regence BlueCross BlueShield of Oregon, is first to help Doernbecher and community pediatricians support children with life-limiting illnesses
The Kerns family of Eugene, Ore., never gave up hope that their 9-year-old daughter, Mary, would survive her battle with leukemia, but they also knew that talking about how she wanted to spend her final days was important. A specially trained palliative care team at Doernbecher Children's Hospital helped her family get through that difficult time in her life. Palliative care enhances comfort and improves the quality of life for children and their families during the last phase of life.
"We can look back on our experience of her dying with warm feelings. It's still sad, but we're not regretful. They helped us meet her needs and desires," said Joan Kerns, Mary's mom.
Doernbecher Children's Hospital's special team is expanding this care and assistance to all children at Doernbecher and throughout the state, thanks to a unique collaboration with Regence BlueCross BlueShield of Oregon. Bridges - Doernbecher Children's Hospital's new Pediatric Palliative and Comfort Care Program - is the first program of its kind in Oregon for children with life-limiting illnesses, their families and the professionals who care for them.
Regence is championing Doernbecher's Bridges program with a three-year $150,000 grant. The funding allows Doernbecher's specially trained palliative care team to expand its services and support to all children, not just those with cancer, and their pediatric caregivers in the community.
"There is nothing more difficult for a parent than to watch their child struggle with illness or even the possibility of death. The Bridges program is an excellent example of the work health care professionals in our community are doing to support families in their time of need. Regence is proud to partner with Doernbecher and contribute to the improvement of health care and quality of life for children and their families," said Mark Ganz, president and chief executive officer of The Regence Group.
Bridges' multidisciplinary team includes a physician, nurse practitioner, registered nurse, social worker, child life therapist and chaplain.
The team meets with families and caregivers to determine how to provide the best quality of life for children with life-limiting illnesses. Some of the services include providing pain and symptom management; psychological, social and spiritual support; and facilitating support from community services.
For Mary Kern's family, the meeting also included her teacher, priest, family members and physicians from Seattle, Portland and Eugene. Together the team helped the Kerns decide to schedule weekly coffee visits with their big family at Mary's home during her last few weeks of life so everyone could enjoy time with her.
In addition to cancer patients, this new program will benefit children with illnesses such as cystic fibrosis or severe cerebral palsy, which may limit their lives to days, weeks or years. About 80 children receiving services from Doernbecher die every year. However, palliative care is not only about planning for death, it is about improving the quality of life for children and their families during a difficult time. The team's aid doesn't stop when the child dies. "Often we follow families for a year - calling to offer words of support on the child's birthday or on Mother's Day," said Kathy Perko, pediatric nurse practitioner and Bridges program director.
The Bridges team will also provide education, leadership and innovation in comfort care and bereavement follow-up to community health care providers. The team is already scheduled to begin providing pediatric palliative care education to health care providers throughout Oregon.
"Bridges is a unique collaboration between Doernbecher and Regence. We are very thankful for Regence's generous support and honored to partner with them on this valuable, compassionate program," said Peter Kohler, M.D., OHSU president.
Mary's dad, Pete, said the palliative care team played a vital role in their healing process. "It wasn't just good for Mary, it was good for all of us. It was tragic in the short term, but her siblings can look back on their time with her fondly."
DOERNBECHER CHILDREN'S HOSPITAL
Doernbecher Children's Hospital, an integral part of Oregon Health & Science University, is a world-class academic health center that cares for children from around the United States. Doernbecher provides more than 40,000 children each year from all corners of the country with outstanding cancer treatment, specialized neurology care, highly successful heart surgery, and care in many other specialties of pediatrics. In addition, Doernbecher's expert staff travels around Oregon and southwest Washington providing pediatric care through 16 outreach clinics. For more information, visit www.ohsudoernbecher.com.
REGENCE BLUECROSS BLUESHIELD OF OREGON
Regence BlueCross BlueShield of Oregon provides medical, dental and related coverage for about one million members in Oregon and in Clark County, Washington. It's part of the Regence Group, the largest affiliation of health plans in the northwest and intermountain states, collectively covering nearly three million people. The Regence Group and its affiliates are not-for-profit independent licensees of the Blue Cross and Blue Shield Association. Nearly one in three Americans has health care coverage through Blue Plans. For more information, visit www.or.regence.com.