Can your hospice extend care to kids?
Can your hospice extend care to kids?
PA hospices makes this a priority
Hospice officials have long found themselves caught in a dilemma when it comes to treating terminally-ill children.
Children’s families and physicians traditionally are not willing to give up on curative treatment until the child is within days of death. By the time hospice is referred the case, it’s too late for an agency to provide many of its supportive services to the family and patient.
"Most of the children we’re referred live [less than] a week, and one recent referral was for a child who died 45 minutes after we received the initial call for an evaluation," says JoAnne Reifsnyder, MSN, RN, director of supportive care division for the Visiting Nurse Association (VNA) of Greater Philadelphia. VNA, which was founded in 1886, serves southeastern Pennsylvania, southern New Jersey, and northern Delaware.
Problems associated with handling pediatric patients underscore a bigger hospice concern, Reifsnyder says. "Right now, the hospice industry is facing some real challenges in the type of care we provide," she explains. "The industry has a declining length of stay, which is troublesome, because it means patients who were eligible for much longer service instead received a couple of days of care or a couple of weeks of care from a hospice team."
Reifsnyder refers to a 1986 study that reveals how more than half of the terminally ill children studied received curative therapy right up until their death.1
"That’s a very important consideration because generally, that is not the case with adults," she says. "Once death is anticipated for adults within a week or two, therapies frequently are stopped."
The VNA of Greater Philadelphia has a supportive care division to address this problem for both adults and children. The division includes both a home care program as well as a Medicare-certified hospice, and they operate under different conditions of participation for federal funding. The supportive care program is for patients who may not yet be medically or emotionally ready to receive hospice care, Reifsnyder says.
"It’s a way of providing their home care through our specialty team of nurses, social workers, and other clinicians," she says. Reifsnyder gave a lecture about the program’s focus on improving end-of-life care for children at the recent National Association for Home Care (NAHC) conference in Atlanta.
The program has had limited success with children since it began in August 1997. Twelve children have benefited from the program, and all but one died.
Although the services are designed for families who may still be seeking cures, many parents have a natural bias against anything having to do with the word "hospice," Reifsnyder says. "They hear the H’ word and think, My child’s not ready for that,’ or the physician says, I don’t want to bring this up with them now.’"
Still, Reifsnyder says she believes the program is a much-needed service for these families; eventually more people will seek it out, because it offers so many benefits in the forms of support services. For example, a child enrolled in the program celebrated some major milestones of his brief life with hospice professionals. When he lost his first tooth, hospice workers were there to help the family celebrate and be happy about this developmental mile marker. "That was a life moment, not a death moment," Reifsnyder says.
The program gives hospice professionals extra time with the terminally ill children. "We get into celebrating the day-to-day triumphs and focus less on preparing for the disaster," she says.
Reifsnyder explains how the program works by answering these questions:
• How do you find terminally ill children?
"That’s our ongoing challenge. What we’ve begun to do is move away from traditional settings, such as acute care settings," Reifsnyder says.
Physicians and other traditional gatekeepers might say the program sounds terrific, but they continue to refer children at very late stages of their disease. The agency has begun to reach out to community agencies and schools that provide support to chronically ill children. The program is looking for children who may have more than six months to live, but not expected to live past childhood.
"Once we identify children who need care, then we’ll go to their doctors and say, Here’s a program we have for children, and you don’t have to sign that they have a life expectancy of less than six months,’" Reifsnyder says.
The agency also markets the program to the public through public service announcements and information distributed through United Way.
• Where do you find funding?
Foundations have helped fund the program’s start-up and special projects and supplies. Some children have received Medicaid funding, which covers the program as a home care and not a hospice service. The children can become eligible for hospice services once their families abandon curative treatment and their life expectancy is less than six months.
Also, commercial payers have paid some of the services.
Still, the program’s services often are not covered by governmental or commercial payers, so the VNA has picked up some of the cost."What we’re trying to do is reach beyond this handful of children who meet the strict hospice eligibility criteria; it’s not that I have all the answers, but we’re asking the questions," Reifsnyder says.
• What kinds of benefits does the program offer?
The program gives nurses, counselors, and other hospice therapists an opportunity to meet with terminally ill children and their families months before they die. This allows enough time for building trust and rapport, which are essential to bereavement counseling, Reifsnyder says.
"You need to establish a trusting foundation or relationship as the basis of this ongoing care," she explains. "If you’re only seeing kids or adults in the last two or three weeks of their lives, it’s going to be very difficult to establish this kind of bond you need to provide ongoing care."
The VNA has a maternal and child health division with many services for chronically ill children. This division existed before the supportive care division. The pediatric services are available to more families as part of the agency’s end-of-life program for children.
The agency brought in new staff and cross-trained existing hospice staff who had experience working with children. Also, the agency trained some of the pediatric staff to become comfortable with end-of-life care for children.
"Then, we tapped into additional therapists on a contract basis, including art therapy, play therapy, and those types of things," Reifsnyder says. The program also offers nursing services, social work care, speech therapy, and chaplains.
The program also may help a family buy equipment that is needed to help the child attend school. These are the types of things that hospice normally would not provide.
"This agency has a commitment to this program, and I know there are children who could use this kind of help and aren’t getting it," Reifsnyder says, adding that its services will continue whether or not funding covers everything. "This agency existed in 1886 before Medicare and before anybody thought of third party payment for home care," she says. "The care was provided then and somehow it worked."
Reference
1. Lauer, ME, Mulhern RK, Hoffmann RG, Carmitta, BM. Utilization of hospice/home care in pediatric oncology. Cancer Nursing. 1986: 9(3);102-107.
Source
• JoAnne Reifsnyder, MSN, RN, Director, Supportive Care Division, Visiting Nurse Association of Greater Philadelphia, Monroe Office Center, One Winding Drive, Philadelphia, PA 19131. Telephone: (215) 581-2046.
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