Children who have a life-limiting diagnosis and their families can now benefit from services available through the North Dakota Medicaid program.
The federal Centers for Medicare and Medicaid Services has approved the North Dakota Department of Human Services' Children's Hospice Program. Through the program, children can receive hospice services while continuing to receive treatment for their illness.
"Typically, individuals receiving hospice care had to essentially give up curative care and receive only palliative care," said Maggie Anderson, medical services division director for the department of human services.
Katina Tengesdal/MDN - - Registered nurse Terri Nelson, supervisor for Trinity Health’s Home Health/Hospice, holds a brochure about Children’s Hospice services.
Katina Tengesdal/MDN - - Registered nurse Terri Nelson, supervisor for Trinity Health’s Home Health/Hospice, spoke about options for children with life-limiting diagnoses and their families.
"We hope to serve families who have a child with a life-limiting diagnosis, and we so to meet their needs so they know their child can receive hospice services that they need and continue to receive curative treatments," she added.
Anderson said the program came about when a waiver for the service became available through the Centers for Medicare and Medicaid Services.
"We identified it as something we wanted to seek," Anderson said. "We felt it was important to families."
Lawmakers approved state matching funds for the program during the 2009 legislative session. Because the services supplement existing approved Medicaid services and serve a specific group of people, the state had to apply for a waiver and obtain federal approval.
The program is designed to benefit children who have a life expectancy of a year or less. It can serve up to 30 children in the state at a time and will cover qualifying children ranging in age from infants up to young adults age 21. Children with life-limiting diagnoses may qualify even if their families don't meet the regular income criteria for Medicaid coverage.
The program will offer options to families in a difficult situation, said registered nurse Terri Nelson, Home Health/Hospice supervisor for Trinity Health of Minot.
"It will allow parents the choice of continuing with treatment without giving up their hope for a cure, while also receiving the support of hospice and what we offer including equipment, medications and the security of having someone to call and discuss the emotional side of what's going on," Nelson said.
"Often we end up being a rescue service, and see families during the last few days of a child's life. Parents don't want to give up that hope," she added.
Continued hospice support alongside treatment could offer uncertain families more help, as well as support them in making decisions to stop treatments or to care for a loved one at home.
"Oftentimes when people hear the word 'hospice' they only think about dying," said licensed social worker Carol Mohagen of Trinity Home Health/Hospice. "But we talk a lot about living, and many want the option to go home. That's really our focus, to help people have the best quality of life in the time that they have left."
Mohagen added that in the past year, more people have had the option through private insurance to continue with hospice care and treatment at the same time. By having the two options side by side, patients and their families can feel freer to make decisions to continue or stop curative treatments without as much pressure.
"Having more options empowers people to make good decisions," Mohagen said. "In healthcare they often feel pushed one way or another."
Patients and their families may be afraid of stopping curative treatments for many reasons, among them the fear of losing contact with their primary physician who has been a source of support. The program will allow them to continue working with their primary physician and seek a cure.
Nelson and Mohagen said the program may also help alleviate some healthcare costs. Hospice services have support staff on call 24 hours a day, seven days a week to help patients in a pain crisis or to help answer a family's questions, and support staff can make families more comfortable caring for a loved one at home. The availability of support may prevent some ER visits or hospitalizations that can become costly.