Here are some of the main features of Ohio hospice's pediatric program
Here are some of the main features of Ohio hospice's pediatric program
Neonatal services are included
The Hospice of the Western Reserve of Cleveland, has an award-winning pediatric hospice and palliative care program that integrates some of the same hospice elements of an adult program with services that are particular to a pediatric population.
The program has gained community-wide acceptance and enhances the hospice's reputation among referral sources and others, says Mary Kay Tyler, MSN, pediatric team leader and nurse practitioner for Hospice of the Western Reserve.
Here are some of the chief features of the pediatric hospice and palliative care program:
• It has a consortium of providers. "Instead of one pediatric medical director, we have a consortium of six pediatric physicians in the community," Tyler says. "They're all with competing health care systems that wouldn't normally be working together, but because they're all committed to pediatric palliative care, they put aside their differences."
The physicians rotate a certain number of weeks with the program and help the hospice provide care to children, regardless of where a particular child receives his or her medical care, Tyler explains.
"Each has a different area of expertise," she says.
One physician is a pediatric ethicist, another is a palliative medicine specialist, a third is a family practice physician, and another is a pediatrician who specializes in taking care of children with complex disabilities, including cerebral palsy and multiple systems problems, Tyler says.
Another physician is a medical director of a residential facility for children with multiple handicaps and disabilities, and another is one of the hospice medical directors, she adds.
"They each provide 24/7 back-up to the team, consulting from their particular institution and providing a presence at their institution for palliative care," Tyler says.
Some of the physicians had been through palliative care training prior to participating in the program, and the others have sought education in the field since then, she says.
• Work out reimbursement issues individually. "We work with private insurance case managers on a case-by-case basis, and we try to work with case managers to see if payers will pay us per visit, while continuing to pay for chemotherapy and radiation treatment," Tyler says.
"There is a hospice per diem reimbursement out there, and some patients are eligible for that," she says. "Sometimes chemo and radiation are appropriate on the hospice benefit, so you have to take each case and determine what's appropriate for that particular patient."
Unfortunately, the hospice does not receive reimbursement for all of the care it provides, so it does depend on donated funds and grants to sustain the program, Tyler notes.
"We grew from taking 20 to 24 new pediatric patients a year to having 70 new pediatric patients a year, so we're working with about 100 families a year now," Tyler says. "We have had a steadily increasing number of patients that we see each year since we changed our program, and we're very proud of that."
• Design a guide for caregivers. The hospice has a caregiver guide for parents. It explains how children view death according to different age groups, Tyler says.
"Kindergarteners, five and six year olds are very concrete when it comes to death," Tyler says. "So we explain to them in concrete terms what death is about."
For example, it would be a mistake to tell a kindergartener that someone who has died has gone to sleep, because then the child will be afraid each time he or she goes to sleep that he or she won't wake up, Tyler explains.
"Tell them the body stopped working because they'll understand that," Tyler suggests.
The caregiver guide's chart about general concepts of death has age category rows divided by ages 2-5, 5-8, 8-12, and 12-18. After each age category there are three columns with points, and these are common developmental characteristics, grief reactions, and helpful approaches.
For example, under grief reactions for ages 2-5, these items are listed:
- Confusion
- Agitation at night; afraid to go to sleep
- Able to appreciate a profound event has occurred, but may not understand permanence of death
- Seem unaffected
- Repeated questions
Also, under helpful approaches for ages 8-12, these items are listed:
- Answer questions directly and honestly
- Reassurance about the future
- Create times to talk about feelings and questions
- Offer physical outlets
- Reading
- Include in funeral plans and rituals
The caregiver guide also includes sections on patient care, emotional care, reference material and notes. Emotional care includes information on the special needs of siblings and school-age children and helping a child heal, as well as adult grief and relationship to your community.
• Help caregivers/parents cope with other people's expectations. When the hospice patient is a child, the caregivers sometimes have multiple burdens regarding their decisions.
For instance, they have to devote some of their energy to the dying child's siblings, who might feel anger and guilt, thinking they had something to do with their sister's illness because they had sometimes hated her for being a brat, Tyler explains.
Hospice workers can help the family reassure the siblings that they did not cause the sister's illness, and they can help the family recognize signs that the sibling is having problems coping, Tyler says.
Also, hospice staff can assist when the parents are having problems with their extended family.
For example, in one case the parents of a five-year-old hospice patient decided not to return the child to the hospital, but their extended family was having a hard time understanding their decision, Tyler recalls.
"They chose not to go across the country to seek experimental therapy, but family members couldn't understand why they weren't," Tyler says. "So they felt like they were not supported by their extended family members."
The parents had come to terms with the reality that no matter what they did, their daughter was going to die, so it would be better to make her comfortable and keep the family together, and they were well-educated in their decision, Tyler says.
"So we spent time with the extended family members to try to educate them and help them realize the stress they were putting those parents under," Tyler says. "When all was said and done, people came to terms with it and ended up being supportive to the family."
• Assist with funeral ceremony and aftermath. "Being able to put together a meaningful ceremony is difficult," Tyler says. "Most of these are young families who don't know how to put together a ceremony for a child, and hospice can help with that."
If the child is old enough to understand, then the child can participate in the planning, Tyler notes.
"Most of us forget that children have innate communication with a higher being, and spiritual care coordinators are very good at helping families recognize this," Tyler says.
Tyler recalls one case where a girl had a wisdom and sense of peace that was very apparent, and she could express this to others with a little bit of assistance.
After the child's death, the hospice will follow families for at least two years, recognizing that families need to be followed for a longer period of time after this kind of loss, Tyler says.
"Whenever we can we try to get our bereavement coordinator in to see the family before the child dies and establish that relationship," Tyler says.
"We also follow the family more frequently than we do in the adult model, and we have a number of support groups, including a monthly support group for both parents and siblings," Tyler says.
• Accept neonatal referrals. "We will take neonatal referrals, so we work with families who have been given a diagnosis while the mother is pregnant," Tyler says.
"We had one mother who had a routine prenatal visit and the ultrasound picked up that the baby had a cardiac defect," Tyler says. "It was the most severe heart defect there is, and there was no guarantee that the baby would live without a heart transplant, and the family was against aggressive therapy."
The family decided to continue the pregnancy and bring the baby home if the baby would live for more than a few hours, so hospice staff helped the parents develop a birth plan, including an outline of what they wanted done at the time of birth and how aggressive the therapy would be, Tyler says.
"We're one of the few hospices across the country that will take babies at that point in time, and sometimes they die before birth, but we give the same bereavement support as for any family," Tyler says.
Need More Information?
- Amber Jones, BA, M.Ed, Hospice Liaison Consultant, Center to Advance Palliative Care, Mount Sinai School of Medicine, New York City. Web site: www.capc.org. E-mail: [email protected].
- Cindy Marsh, Executive Director, Hospice of Texarkana, Inc., 803 Spruce St., Texarkana, TX 75501. Telephone: (903) 794-4263.
- LaDonna Van Engen, RN, CHPN, Hospice Program Coordinator, Saint Elizabeth Hospice, 245 S. 84th St., Suite 100, Lincoln, NE 68510. Telephone: (402) 219-7043.
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