Hospice has developed award-winning program for serving pediatric patients
Hospice has developed award-winning program for serving pediatric patients
First pediatric patient seen in 1980's
As community providers, managers at the Hospice of the Western Reserve in Cleveland, realized more than a decade ago that its community increasingly will include pediatric hospice cases, so something needed to be done to ensure this population was well served.
The hospice responded to local trends by implementing a pediatric hospice program after serving the first pediatric patients in the mid-and-late-1980's, says Mary Kay Tyler, MSN, pediatric team leader and nurse practitioner of the Hospice of the Western Reserve. The hospice received a Rose and Sam Stein Award, presented by the Ohio Hospice & Palliative Care Organization (OHPCO) of Dublin, OH, in 2004 for its perinatal palliative care program.
"In the late 1990's, across the country people started looking at pediatric palliative care and hospice movement, which has always been behind the adult movement," Tyler says. "At that time we were getting 20 to 24 new pediatric referrals a year, and we thought we should be getting more patients with the demographics of this area."
In 1999, the hospice conducted a feasibility study that looked at pediatric centers and found that there remained a need for pediatric palliative care, but the program needed to be structured in a different way in order to meet the need, Tyler says.
"We needed more staff to care for children, because their needs are different from adult needs," Tyler says. "We talked with physicians, nurses, and social workers about what types of patients they felt would benefit from palliative care and what were the barriers to palliative care and hospice services."
Hospice staff also surveyed families they had served previously and brought them together into focus groups, as well as talking to them in telephone interviews, Tyler notes.
"We also provided counselors just in case the focus group evoked any emotional responses that needed some counseling afterwards," Tyler says.
"The physician interviews were conducted by a pediatrician who was a pediatric oncology fellow," Tyler says. "I did the nursing interviews, and we had an outside consulting group do the parent interviews."
The consulting group was hired to provide some neutrality so that families could talk about issues that made them unhappy, but there also were counselors available at all sessions, in case anyone needed assistance, Tyler says.
"We took all of the feedback and received recommendations from the outside firm," Tyler says.
From this information, hospice managers decided to restructure the pediatric program to meet the community's specific needs, including having a strong nurse practitioner/physician component, Tyler says.
Before there were patients, the facility committed resources for the program, hiring two nurses and a social worker, she adds.
"We had to add staff at the front-end to meet the expectations," Tyler says.
The facility also found from its surveys that physicians and other referral sources expected the pediatric practitioners to be able to have a very fast response time, responding to a referral within a few hours instead of 48 hours, Tyler notes.
"They'd call in the morning and want someone sent to the clinic that day," she says. "They also expected to have a primary nurse who would be working with the family and who would open the case and be the first person to meet the patient."
Initially, the hospice had a program in which a team would open the case and then turn it over to a primary team, but physicians expected there to be a smaller group of individuals working with the family, Tyler says.
"That's challenging to provide because we service a large geographical area, and to serve them with a small group of people is very challenging," Tyler explains. "Physicians also expected us to be able to take care of patients even if they were still receiving very aggressive therapy, including chemotherapy and radiation."
This also posed a challenge, but the rationale was understandable, Tyler says.
"Families don't want to give up the aggressive therapy, and nor should they have to because aggressive therapy can buy a lot of quality time for the child," Tyler says.
The other expectations of physicians and referral sources were that the child would be brought back to the hospital as frequently as the family desired and that the physician would be managing the patient's care, she says.
"They were afraid we would take over and they wouldn't have the same level of control," Tyler says. "So we had to convince them that we wanted to work with them and had no intention of taking over their patients."
Tyler offers this example of a typical pediatric case:
A child of about age 5 has a brain tumor that is not operable, but does respond to radiation, Tyler says.
"So her parents decide they will proceed with a course of radiation, and we're not called initially on this particular case as the child receives six weeks of radiation," Tyler says. "But after one month of radiation treatment the girl starts to have problems and the tumor is growing again."
At that point the oncologist has a conversation with the parents, telling them that things are not going well, and he suggests chemotherapy, although it normally doesn't work. The oncologist also recommends calling the pediatric hospice program.
"The family was resistant, but they were open to hospice when she relapsed six weeks later," Tyler says. "We came in at that point in time and the family did not want any further treatment, instead wanting to focus on the quality of life with her and her two older siblings."
The hospice nurse saw the girl and family twice a week, checking vital signs and doing physical assessment, and helping the child with problems, such as unsteady gait. Also, a social worker met with the family to focus on concrete problems, including the family's reduced income from the mother's not working, Tyler recalls.
"We had a spiritual care coordinator working with the family to start focusing on how the parents were very angry," Tyler says. "They were very religious and couldn't understand how God would do that to them, so the spiritual care coordinator was working with the parents on this."
The little girl loved music, so the hospice brought in a music therapist, and the hospice provided staff to assist teachers and a guidance counselor at the girl's school, Tyler says.
The hospice sent out letters to the girl's kindergarten classmates to obtain parental permission prior to meeting with the students. There also was a parent meeting where the hospice worker went over what would be discussed with students, Tyler says.
In the classroom, the hospice worker would ask students about their own experiences with death, including the loss of a grandparent, and there's a discussion about how the child is sick and on some days won't be in the classroom, Tyler says.
"The child could be in the classroom when this discussion is going on—it's all geared toward the child," she says. "What you end up doing is take the lead of the child and when children ask questions you reflect the questions back and have a conversation, going in the direction the children lead you, stopping when they're done."
The hospice's caregiver guide assists family members and teachers with having these conversations at other times they might arise.
"We try to do as much education with the classmates as we can before the child dies to prepare the kids," Tyler explains. "Then once the child dies we also respond with a crisis type of response and help the children through an on-going follow-up."
The kindergarten class made a special wreath for the family in which each child wrote a memory on a piece of ribbon and the ribbons were tied to the wreath, which was given to the family at the funeral, Tyler says.
Need More Information?
- Mary Kay Tyler, MSN, CNP, Pediatric Team Leader and Nurse Practitioner, Hospice of the Western Reserve, 10645 Euclid Ave., Cleveland, OH 44106-2206. Telephone: (216) 502-4440.
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