Children with life-threatening illnesses often travel from communities across Oregon to receive specialty care at OHSU Doernbecher Children's Hospital. When no cure is available, however, many families prefer to take their child home and care for them with support from loved ones and community hospices. But for those who don't feel well enough to make the trip to OHSU Doernbecher, or for those who live outside the Portland metro area, this means leaving behind the specialized pediatric palliative care they receive at Doernbecher.
Soon, families with a seriously ill child won't have to choose: They can have both the comfort of home and pediatric palliative care. Through a $195,000 Regence Foundation grant to OHSU Doernbecher Children's Hospital Foundation, a telehealth project will expand access to palliative care for seriously ill children throughout Oregon and Southwest Washington, in both metro and rural areas. The project will be run by the Bridges Palliative Care Program at OHSU Doernbecher in partnership with community hospices throughout Oregon and Southwest Washington.
Palliative care is a multidisciplinary specialty focused on reducing the pain and suffering associated with serious and life-limiting diseases. Goals of palliative care include addressing both the physical and emotional symptoms of illness, providing support to patients and their families, and respecting patients' wishes for care at the end of life. Palliative care can also be provided in conjunction with curative treatment.
"Our goal at The Regence Foundation is to ensure people who are seriously ill have access to the care they need to live well at the end of life," said Peggy Maguire, Regence Foundation board chair. "While it's never easy to think about children being so sick, palliative care can truly make a difference in the quality of life for children and their families. That's why it is critical they have access to it in their own communities."
The Bridges Palliative Care Program plans to use The Regence Foundation grant funds to hire staff to launch and sustain its telehealth program, purchase iPads for secure video conferencing for Doernbecher staff and hospice partners, cover travel costs associated with set-up and training, and offer ongoing pediatric palliative care education for participants. The iPads will be equipped with special encryption software to ensure confidential, HIPAA-compliant communication between clinicians and patients.
"We're caring for children and families at a very difficult time in their lives, and we develop strong relationships with them," said Bridges program director Kathy Perko, P.N.P. "Although we often provide telephone support after they leave the hospital, we're really limited by what we can't see. The telehealth program will enable us to give medical and emotional support to these families, as well as resources to their local hospice provider. Oregon and Southwest Washington hospices are excited about this program and will come online as they have patients in their community."
Current participants include:
- Dr. Davis Wilkins, Medford
- Hospice Southwest, Vancouver
- Little Stars, Sacred Heart Hospice, Eugene
- Partners in Care, Bend
- Serenity Hospice, Portland
- Willamette Valley Hospice, Salem
Regence BlueCross BlueShield of Oregon and The Regence Foundation have been longtime supporters of the Bridges Palliative Care Program. In 2005, Regence BlueCross BlueShield helped launch the Bridges Program with a three-year $150,000 grant. In 2009, The Regence Foundation provided the program with a $52,000 grant to survey pediatric palliative care training needs among community hospice nurses throughout Oregon and Southwest Washington and develop a pediatric hospice training curriculum and DVD.