Children with fatal illnesses given chance to be at home

New program uses technology to link ill with specialists

By Marissa Harshman, Columbian health reporter

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Many children facing cancer or other life-limiting diseases without a cure would rather spend their remaining time in the comfort of their homes rather than a hospital.

But for children who live in Clark County and other outlying areas, that also means leaving behind the Portland care providers on which they and their families have spent weeks or months relying.

That's about to change.

Thanks to a $195,000 grant from the Cambia Health Foundation (formerly The Regence Foundation), providers from Doernbecher Children's Hospital will, in a way, go home with their patients. The Oregon Health & Science University's children's hospital will use the money to launch a program using iPads to connect the hospital's specialized palliative care providers with children, their families and their community hospice care providers.

"We see this as very innovative and potentially game-changing in terms of expanding access to people who don't have access to a Doernbecher-type facility," said Maddie Andrews, the foundation's palliative care program officer.

The telehealth program will be operated by Doernbecher's Bridges Palliative Care Program in partnership with community hospices throughout Oregon and Southwest Washington, including Hospice Southwest in Vancouver.

The Doernbecher pediatric palliative care staff work as a team to provide emotional, physical and spiritual care for children and their families while they're receiving treatment at the hospital. People with serious illnesses can receive palliative care at any point in time, including in conjunction with curative care.

Hospice is essentially palliative care but only during the last six months of life. When it's time for patients to transition from palliative to hospice care, they usually choose to do so in their own communities, said Kathy Perko, Bridges Program director.

The community hospices participating in the telehealth program will, in the next few months, each be given an iPad equipped with software to ensure the device and Internet connection are secure. The hospice care provider will take the iPad with him or her during home visits. The provider and family can then use Internet video chats to connect with the specialists at Doernbecher, Perko said.

The telehealth program offers numerous benefits to the patients, their families and local hospice providers, she said.

For patients, seeing the familiar faces of the Portland-based providers eases the transition. The specialists are also available to answer questions and help parents engage in difficult discussions with their children, Perko said.

In addition, many community hospices only have a handful of pediatric patients a year, whereas the Bridges Program staff work with children regularly. The iPads will give local hospice caregivers direct access to the specialists, who can assist with symptom management, offer education and training, and provide support for the hospice care providers, Perko said.

"It's hard to maintain a pediatric expertise," she said. "This allows the expertise of the children's hospital to reach out through community hospice programs."

Marissa Harshman: 360-735-4546; http://twitter.com/col_health; http://facebook.com/reporterharshman; marissa.harshman@columbian.com.