Pediatric Palliative Care Project
Pat Emerick, MSW
"What has surprised me was the number of hard-core business people who wanted to do this program because it was the right thing to do. Because they wanted to help."
— Pat Emerick, MSW
The mission of the Pediatric Palliative Care Program is to increase access to an improved quality of comprehensive pediatric palliative care and end-of-life services for children and Their families. The project is designed to meet the following objectives:
Regence BlueShield joined this project in hopes of finding a better way to address the needs of the dying child and his or her family. They were aware that hospice was a rarely used, but much needed benefit for children.
This three-year demonstration project was designed to address access and care barriers through fundamental changes in benefit administration. The Project is designed to serve children under the age of 21 who have potentially life-limiting conditions for which palliative care is the most appropriate form of treatment. Any patient is eligible if his or her plan includes a benefits management clause, as most contracts do. A benefits management clause allows Regence, under certain circumstances, to use an existing benefit to pay for services that would not be covered under the member’s contract.
Joint case management between hospice nurses and case managers at the insurance company is key to this program. The hospice nurse acts as the eyes and ears, learning the family’s needs, and the case manager knows how to use existing benefits to maximize services.
Regence has provided flexibility in providing care to these patients. With a benefits management clause, the usual home health requirements, such as being homebound, can be ignored. For example, under existing home health standards, if a parent can take a child to the doctor, the child is not eligible for home health services, because services can be rendered in the doctor’s office. This program rejects that idea. Pat Emerick, MSW says, "it puts less emphasis on service limitations and more emphasis on an effort to maximize existing benefits to honor patient preferences, and to reduce the need for hospitalization."
The case nurse can accompany the family to the doctor’s office, which focuses the conversation between physician and parents around what the treatment goals are and how to go about achieving them. Through this program, patients can receive physical or occupational therapy as well as intermittent nursing visits, whatever the care managers agree might help to increase quality of life, reduce pain and suffering, and enable patients to live as fully as possible until they die.
The Decision Making Tool (DMT) tracks goals and plans of care to focus thinking on what the patient truly needs. It was based on an ethical model developed at the University of Washington by Albert Jonsen, PhD, Mark Siegler, MD, and William Winslaide, PhD, JD, leaders in the field of medical ethics. It takes a look beyond the medical side of decision making, and includes patient preferences, quality of life and socio-economic factors. There have been some adaptations to fit pediatric needs in a plan for decision making. The family, doctors, hospice nurse, and program all receive a copy of the plan. This keeps everyone focused on the same goals. Parents like this tool because it reduces ambiguities and they feel their wishes are being heard.
Nurses and social workers in the medical management departments of Regence BlueShield and Premera Blue Cross are involved with the project. For out of contract requests they may seek the opinion of a medical director, a physician licensed in the State of Washington. No special staff has been hired by Regence to manage the project. "The great message here," says Emerick, "is that this is a version of business as usual. This is not a big scary new initiative that is outside the projected budget."
Each year in Washington State approximately 1,100 children and adolescents die. Of these, about one-third die of conditions known to be life limiting. Yet the rapid growth of adult hospice care has no equivalent in pediatric practice. Few children access hospice or receive comprehensive, coordinated, resource-efficient care at the end of life.
The Pediatric Palliative Care Project was funded through a grant from The Robert Wood Johnson Foundation issued to Regence BlueShield, Premera Blue Cross, and The Center for Children with Special Needs Program, a department of Children’s Hospital. The Center has primary responsibility for the program.
The woman who first held the position of project administer, Rhonda Jack, MSW, MPH was interested in children with special needs. She was working with Regence to expand Healthy Options, the Medicaid program in Washington for disabled children. When she was approached by The Children’s Center to be a part of the grant, she immediately saw the potential and necessity for the program.
Many people, including Jack, have acted as champions for the program. Physicians have been enthusiastic. "These people are effective at promoting the program," says Emerick, because they are "an intelligent, persuasive, moral, and ethical group of people whose knowledge of medicine and insurance speaks to the full scope of issues."
The program has not been without challenges. One has been getting people to think outside the box, including the case managers and hospice workers. Defining the "co" of co-management was another challenge. Initially, some of the participating hospice agencies thought there were no constraints on patient services. It was the adversarial concept of "battling the insurance company" except this time the insurance company could not say "no." The concept of shared decision making was difficult to grasp.
Regence has tried to overcome obstacles that have arisen by keeping all lines of communication open. It is also worth noting that when it came down to "this child needs this program," Regence did not turn down any child. They have enrolled twenty-four children so far. Although the original goal was fifty children for the life of the project, this number was harder to reach than project designers thought it would be.
The Center for Children with Special Needs at Children’s Hospital is tracking several things, but only preliminary data is available. Evaluation components will include quality of care, quality of life, and cost. Early examination of this data shows that peoples’ attitudes toward the insurance company are positive, and that Regence is perceived as an advocate. Initial reports show customer satisfaction has risen substantially.
Regence has publicized The Pediatric Palliative Care Program in the provider newsletter. They’ve sent letters to physicians that explained the Project, asking if the option would be beneficial for a particular child. Doctors’ responses have been enthusiastic.
Funding for this project came from a grant from The Robert Wood Johnson Foundation through Promoting Excellence in End-of-Life Care.
"Our vision for this program goes in so many directions. So few children ever receive the benefit of hospice, because of the difficulty of facing the fact that a child is dying. To get services to people who are suffering is such a positive thing," Emerick said. "Many good things could come from this project."
Under a standard benefit structure, patients usually have access to home health and hospice benefits, although not all plans feature both. The Regence Medical Management department is creating a palliative care policy "add-on." As an add-on, the insurance components of the PPCP will be available to members who need palliative, rather than curative, care. Within a couple of years Regence will consider formalizing the add-on into the benefits package. The palliative care policy will be available to people of all ages, since it is illegal to discriminate based on age. As a result, Regence will have progressed from participation in a study grant for the benefit of dying children to an opportunity to provide palliative care to all ages, whether death is imminent or not.
This program has the potential to change the current structure and orientation of hospice agencies. Hospice nurses have experience providing the kind of care such illness requires. It is possible that hospice agencies will want to expand hospice-style care beyond the six months now allotted to care for the dying.
Key Elements of Success
Pat Emerick quotes one of the nurses at the Center for Children who is fond of saying, "When people of good will decide to do something, there’s nothing they can’t do."
Measures of Program Success
The realm of communication and sensitivity to issues is primary. There must be sensitivity to the fact that people’s feelings are not clearly defined about signing a document that says "I understand that this child has six months or less to live" in order to qualify for hospice services. This program offers a better option in this regard. On a national basis, Emerick believes we need to continue working to change people’s attitudes about the end of life. "We need to get death out of the failure category. We need to have a paradigm shift in people’s minds," she says.
Denying experimental care that people requested for their children was difficult. Regence has implemented an experimental, investigational component to their case management options. In some circumstances, Regence will pay for a child’s participation in a clinical trial. If the trial meets criteria for rigorousness of research study, they will give it real consideration.
What I Wish I ’d Known ...
"I wish I’d known more about the medical policy allowing clinical trials earlier. That might have helped one family on the project get a curative treatment they wanted to try. I wish I had been more thorough about documenting, and kept a more careful journal from the beginning. I wish we had more organized, and defined feedback about insurance from families. We only asked three questions, because we did not want to make participation in the project burdensome with long questionnaires." — Pat Emerick, MSW
This descriptive summary is based on an interview conducted by Susan Butler with Pat Emerick, MSW, June 13, 2001.
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