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Children’s Hospital and Regional Medical Center

Tragic deficiencies in the treatment of dying children in this country have been well documented, most recently in the Institute of Medicine’s July 2002 report, When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. Quite understandably, anxious parents resist acknowledging that their seriously ill child might succumb to disease. Young patients and their families face a host of difficult and complex medical and social challenges.

Too often, the health care system lacks the expertise and structures required to respond to the needs of seriously ill children, their siblings and parents in a coordinated manner—or in a setting conducive to comfort, personal control and quality of life. Because these children are often receiving curative treatment or experiencing an unpredictable trajectory, they do not meet requirements for either home health nursing or hospice care.

Children’s Hospital and Regional Medical Center, Seattle, Washington
The Pediatric Palliative Care Project
Principal Investigators: Ross Hays, MD, and Russell Geyer, MD
Focus: Collaborative statewide project to promote family-centered pediatric palliative care, enhance insurance benefit administration and create coordinated, home-based services for children with potentially life-limiting conditions and their families.

A palliative care project based at Seattle Children’s Hospital has thought "outside the box," bringing together clinicians, payers and hospice programs to implement a multi-faceted, collaborative, statewide initiative designed to improve continuity of service and quality of care for children with life-threatening illnesses and their families. The Pediatric Palliative Care Project (PPCP) succeeded in expanding access to home-based palliative care simultaneous with life-prolonging care while coordinating care across all settings, including the hospital. The project significantly improved the quality of medical decision-making as well as patients’ and families’ satisfaction. All of this was accomplished while achieving cost savings or, at least, budget neutrality for the collaborating partners

Building From a Broad Collaborative Base

PPCP began by convening the key partners, Washington’s Medicaid agency and Premera Blue Cross and Regence BlueShield, the state’s two largest private insurers, along with 10 hospice and home care providers from around the state. Together, they agreed on new “co-case management” protocols for palliative care and an approach of flexible benefit management under which the health plans would remove barriers between existing insurance benefit categories, allowing services the children needed to be managed effectively in the appropriate environment.

The PPCP team at Children’s identified potential clients and made initial home visits to assess patients and explain the program to them and their families. Eligible patients and families were then referred within the network of case managers at the hospice providers and insurance companies. From the beginning, the payers were full partners on the project team. Health plan pediatric case managers worked closely with their counterparts at the hospice agencies to develop and implement a patient- and family-centered plan of care to manage each child’s care and needs. The hospice case manager made palliative care visits to the home, reimbursed by the health plan, to assess and monitor the child’s care.

Many of the children served by the PPCP team were simultaneously receiving aggressive treatment for their potentially life-limiting conditions, while the home-based care coordination was provided by hospice nursing staff. Because the insurance companies allowed their case managers a more flexible approach of giving parents the care they wanted for their children without requiring a defined terminal prognosis, the project side-stepped much of the stigma that hospice holds for some parents.

Family-Centered Care Planning

Another key facet of the project was a Decision- Making Tool (DMT) developed by the Children’s Hospital team based on a well-regarded construct of ethical decision-making. This deceptively simple tool provides a guide for patients, families and clinicians to work together during meetings in which critical medical decisions and pragmatic considerations are discussed. It allows patients and families to weigh the relevant factors and make decisions that are best for them and their particular situation.

The DMT proved to be a powerful aid for bringing together key parties to the child’s care for a candid and respectful discussion of all aspects of the child’s life and care needs, leading to a plan of care that they all could own and endorse. This process promoted autonomy for patients and families, and its success in this domain of quality was recognized and valued by the insurance companies.

“The DMT provided a framework for sorting out the most vexing problems,” says Gerri Haynes, RN, the project’s first co-director and a chief architect of the tool. “Families love it. They get information from the doctor, they get to correct inaccurate information on the DMT, and they get a printed copy to take home.” However, Haynes emphasizes, proper use of the DMT requires time and experienced facilitation skills. These visits and clinical personnel time are not covered by insurance and must be subsidized by the hospital.

During the research phase of the project, 42 seriously ill children and their families were enrolled in the decision-making and co-case management process and its battery of research surveys. Follow-up surveys show clear improvements in patient/family satisfaction, health-related quality of life, functional wellbeing, and provider satisfaction with care.

Since completion of the Promoting Excellence grant, the partners have all advanced the work of pediatric palliative care, extending this more coordinated, personally satisfying way of meeting the quality-of-life needs of dying children and their families across all settings of care. Several of the participating hospices either added or expanded specialized pediatric services. Regence and Premera opted to continue their programs, based on high client satisfaction rates, improved quality of care, and at least budget neutrality. Children’s Hospital is preserving its PPCP team in a new form as a palliative care consulting service.

“There is at least anecdotal evidence to persuade those of us in the administrative ranks of this institution to open up the purse strings and continue to support this program.”
- Patrick Hagan, Seattle Children’s Hospital and Regional Medical Center

Payer Changes in the Wake of PPCP

Regence Blueshield formalized its “Palliative Care Option” for beneficiaries of all ages as an administrative benefit in July 2001. Regence is also giving strong consideration to including palliative care as part of its standard benefits packages. “The Palliative Care Option is based on the assumption that regular visits by a hospice case manager will reduce the need for emergency room visits and hospitalizations for preventable causes, thus increasing the patient’s quality of life,” says Dr. Mark Rattray, vice president of the company’s Health Care Services Division. “Considering all recipients of palliative care in the aggregate, it is anticipated that the cost will be, if not an overall saving, at least cost-neutral.”

Cost savings were never the motivation for the initiative, adds project administrator Patricia Emerick, MSW. “We’re doing this because it’s the right thing to do for our members at a difficult time in their lives, when coverage limitations are no longer serving a useful purpose,” she explains. “I think it’s looking at members’ needs; it’s helpful to members while being cost-effective. It breaks down barriers to care, and it’s good patient care.”

BlueShield actuaries and epidemiologists took a look at claims data comparing the handful of children enrolled in the palliative care demonstration with similar patients receiving standard care. Essentially, cost differences were negligible, Emerick says, while family satisfaction surveys showed dramatic improvements for the palliative care group. Regence’s administration is “very enthusiastic about the whole thing” and has submitted the project to a national Blue Cross/Blue Shield association “Best of Blue in Medical and Pharmacy Management” quality award competition.

Premera Blue Cross, the state’s other major private insurer, is making co-case management and its flexible benefit administration system standard operating procedure for children identified by the PPCP team, says Premera medical director Dr. Peter West. Since the project began, Blue Cross has enhanced its “care facilitation” function, named for its focus on facilitating the best standard of care. For Premera, it is not a question of quality versus costs. “We assume that the best standard of medical practice is also less costly care—along with making for a pleased and a healthier consumer,” West explains. “We would expect the return to be both economic and in higher quality of life.”

Premera has not conducted a formal cost analysis of the children involved in the palliative care demonstration project. Based on the company’s experience with case management services overall, “We were convinced that palliative care was the right thing to do. We don’t have any reason to believe case management and care facilitation would be less effective for this population,” West says. The company’s internal estimates suggest a six-to-one return on investment—six dollars in reduced health care costs for every dollar spent on case management and related case finding.

Blue Cross actuaries might quibble with that total, West adds, but they agree that it achieves at least a four-to-one return.

What makes the extrapolated cost savings even more attractive to the company is that palliative care “is well-received by our members. Case management is a very positive experience for everyone. It facilitates access to the right kind of services and gives the case manager the ability to adjust services as needed,” West says. “In end-of-life care for children, the complexity of care is great. When you apply case management to these kids, it achieves more appropriate service settings, and you get better satisfied customers.”

Washington Department of Social and Health Services’ Medical Assistance Administration (MAA) is also continuing what it calls its “pre-hospice” service agreement with hospice agencies under authority of the Early and Periodic Screening, Diagnosis and Treatment services program (EPSDT), a federal Medicaid mandate designed to deliver accessible and comprehensive health care to children. Eligible patients are under age 21, covered under Medicaid fee-for-service, and reviewed by the PPCP team at Seattle Children’s Hospital. “This program is for the sickest kids, not those with stable chronic illness,” says MAA’s Phyllis Coolen.

“When we go into a project like this, we try to look at all facets,” Coolen says. “In Medicaid, our funding is limited and shrinking. Hospitalization continues to be our top expenditure, so any time we’re looking at alternatives to hospitalization, we’re interested— especially if the case is complex and the client is going in and out of the hospital,” she relates. Based on a recent analysis of six high-cost children participating in the program, DSHS concluded it saved an average of $3,652 per client per month. Although the number of cases is small, palliative care offers great potential for cost-effectiveness for this difficult and complex population.

Children’s Hospital preserved the nucleus of its PPCP team by absorbing the staff’s salaries and incorporating the positions into a multi-disciplinary palliative care consulting service launched in October 2001 to continue coordination, assessment and educational activities throughout the medical center. The new consulting service has already experienced greater demand than expected, with 60 referrals for consultations in the first six months—quadruple the projection.

According to executive vice president Patrick Hagan, Seattle Children’s Hospital entered the palliative care project “predisposed to be supportive of it.” The Promoting Excellence grant thus pushed the facility in a direction it was already inclined to go, becoming more family-centered and patient-focused. The project was an opportunity “to see if our predisposition was correct—that this approach would provide a better experience for patients and maybe a cost-effective one, as well.” The potential for cost-effectiveness, Hagan says, comes from helping families transition away from treatments that are becoming ineffective, wasteful, painful and unnecessary while maintaining intensive care focused on comfort and quality of life.

“The data so far have demonstrated much greater satisfaction with this approach. Can we go to the next step and say we have evidence of savings?” he asks. “There is at least anecdotal evidence to persuade those of us in the administrative ranks of this institution to open up the purse strings and continue to support this program.” The hospital will continue to track satisfaction and cost data on the program, but the palliative care staff positions have been approved for a second year. The next challenge, Hagan adds, will be to spread PPCP’s influence throughout the institution so that the palliative approach becomes more standardized.

“Palliative care is just good care,” observes Children’s Hospital palliative care social worker Bonnie Shultz. “All of us have talked about the barriers to hospice referral long enough. Now we need to stop talking about the barriers,” she says. “Hospices do great work—we need to join with them so that they can do what we need them to do, and we need to find a way to support them and pay them to do it—breaking them out of the box and becoming their partners.”

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Promoting Excellence in End of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit for more resources.

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