Name of Project: Supporting Children at the End of Life: Improving Access and Quality of Care (The Pediatric Palliative Care Project)
Institution: Children's Hospital and Regional Medical Center, Seattle, WA
PI: Russ Geyer, MD and Ross Hays, MD
Abstract (as described by Project staff)
The Pediatric Palliative Care Project (PPCP) provides family-centered comprehensive care planning and coordination of services for children with potentially life-limiting conditions through use of a co-case management model and a unique ethics-based communication tool - the Decision-Making Communication Tool. Evaluation of the success of this project will be achieved through the use of tools developed or adapted by project staff. Additionally, use of pain and symptom algorithms created by project staff will be evaluated through this project.
Brief Synopsis of Program Characteristics, Successes and Challenges
The Pediatric Palliative Care Project represents a unique collaboration: Children's Hospital and Regional Medical Center (the only pediatric referral center in a large four-state area and the institutional base for the University of Washington School of Medicine's Department of Pediatrics) partnered with Washington's two largest insurers (Premera and Regence Blue Shield), with Washington State Medical Assistance Administration, and with local home care providers to create a system of providing palliative care to children. A third insurer, Northwest Medical Bureau, recently joined the partnership.
The partnership is built on a commitment from all parties to design flexible benefits that allow payment for palliative care for children with potentially life limiting illnesses. As a result of complex negotiations and teamwork, the insurers "unbundled" hospice services and contrived methods of paying for case management, and a waiver was awarded by the Washington Medical Assistance Administration that allows pre-hospice case management for children with fee-for-service Medicaid.
The heart of the model is a co-case management approach wherein a case manager from the home health/hospice agency involved in caring for the child teams with the insurance company's case manager. The Pediatric Palliative Care Project is, in essence, the broker that pulls together these case managers while providing palliative care expertise. The result is collaboration between payer and clinician, working together to arrange the appropriate care through flexible administration of benefits.
The centerpiece of the Pediatric Palliative Care Project is a unique ethics-based Decision Making Tool (DMT), a comprehensive approach to care planning which integrates medical indicators with patient preferences, quality of life issues and contextual issues in order to formulate a balance care plan. The plan, jointly created by the patient, family, health care providers, home health/hospice case manager, and insurance company case manager, encourages advance and long-term planning.
The project has faced many challenges, not the least of which is the deep-rooted reluctance in our culture to accept the fact that children die. Additionally, the project enrolls children from across Washington, requiring staff to cover a vast area to provide education about the program to providers with widely varying levels of experience with and exposure to children with life limiting illnesses. And, arranging care for children in rural areas with a paucity of services has proven to be vexing. Patient enrollment has been slower than expected, primarily because only those patients who are covered by one of the project's insurance partners and have purchased the right blend of insurance are eligible to participate.
Despite these challenges, the PPCP has forged ahead, thanks to a particularly cohesive, committed project staff, led by Russ Geyer, MD, Director of Hematology & Oncology and Ross Hays, MD, Associate Director of the Department of Rehabilitation Medicine. Other members of the team include a project manager, nurse practitioner, part time physician and social worker, researchers and a pharmacist. (Of note, in Washington State, pharmacists have prescriptive authority under protocol. The pharmacist on the project team was instrumental in receiving approval from the state Board of Pharmacy for palliative care protocols, thus enabling pharmacies to be, in essence, care sites that radically expedite the delivery of needed medications).
Because of the lack of existing pediatric palliative care clinical and evaluation tools, PPCP staff devoted tremendous time to developing tools:
Project staff identified policy issues as follows:
Project staff, aware of the importance of educating legislators about the work of the PPCP and about the policies that impede the provision of end-of-life care to children, plans to host legislative luncheons in the upcoming year.
The diversity of project partners and components makes the Pediatric Palliative Care Project ripe for myriad dissemination efforts! Examples include professional audiences in pediatrics, pharmacy and hospice; state Medicaid directors; and insurers. The pharmacist involved in the project has been presenting information about PPCP at pharmacy conferences; the insurance partners should follow suit, talking and writing about the project through the appropriate avenues in their industry. In addition to professional publications, the story of this project should be told to lay audiences; doing so will help create public demand for accessible palliative care for children in need.
The project currently publishes a newsletter three times a year and has a website.
Generalizing the Model
This project has created tools and acquired knowledge that can be of immediate value to the field of pediatric end-of-life care. Various components of the project are ideal for exportation, particularly the DMT and family and provider manuals. The field would also greatly benefit from a "How To" manual that describes the process of negotiating with insurers that staff engaged in that resulted in a system of flexible benefit administration and co-case management. Both PIs work at hospitals throughout the four-state area served by Children's Hospital and are therefore in a position to spread the concepts and practices of PPCP to the facilities where they consult.
Generalizing PPCP also entails extending the model to other insurers. Key staff from Premera has presented at several palliative care conferences, but presentations need to be given to audiences of insurers, as well.
In general, this project is prime for multi-site model testing. Project staff indicates that a key issue in being able to generalize this model is gaining a clearer understanding of which patients are good candidates for the program, and they advocate for additional research to better identify the range of health conditions representative of children needing palliative care.
When project staff was asked what it would take to generalize what they have learned, they replied:
Words of Wisdom from the Project
When project staff was asked what advice they would offer other institutions interested in developing a palliative care program, they replied: