Name of Project: FOOTPRINTSSM
Project PATHS: Pediatric Approach To Hospice Support
Institution: SSM Cardinal Glennon Children's Hospital, St. Louis, MO
PI: Suzanne Toce, MD
Abstract (as described by Project staff)
FOOTPRINTS helps children with life threatening illness live well until their journey ends. Through an innovative program of advanced care planning and care coordination, FOOTPRINTS respects the goals and values of the child and family and honors the sacredness of the journey while addressing the child's comfort and the spiritual and psychosocial needs of the family. Through our research and education, we impact attitudes and behaviors around end-of-life care for children through in-service education, seminars and workshops, and publications and presentation.
Through advanced care planning and care coordination, FOOTPRINTS supports the child, family and health care providers in obtaining family centered, community based, ethically sound pediatric palliative care, often concurrently with life prolonging treatments. This model of care supports provision of services by those health care providers already caring for the child and family. The project resides within Cardinal Glennon Children's Hospital, was designed by the Ethics committee and is currently associated with the Pastoral Care Department. The future of the program will continue to be with the Pastoral Care Department.
Educational programs are held in-hospital and in the community in the form of in-services, seminars, and workshops. It is based partly on information from parent and health care provider focus groups and health care provider needs assessment.
Brief Synopsis of Program Successes and Challenges
The program was designed with a great deal of input from families, clinicians, and representatives of community based agencies, via extensive surveys and focus groups. (In fact, the name "FOOTPRINTS" came as a result of feedback from a focus group that noted resistance to words that imply loss of hope, such as ‘hospice.') The project combines clinical, research and education components. The clinical component involves care coordination and advance care planning. The project's educational efforts include "real time" training as children leave the hospital and care is transferred to community-based agencies. Staff have also done extensive in-hospital training, including inservicing all departments in the hospital on FOOTPRINTS, in an attempt to change the culture of the institution. They report difficulties having nurses participate in training, due to staffing shortages.
As of early Spring 2001, 22 children are enrolled in the project and an additional 35 have been enrolled and since died, dating from the project's beginning in January '99. Project staff report some difficulties having children enroll sufficiently early to derive maximum benefit from the program. They see this improving as the project becomes increasingly known and accepted by referring providers.
NOTE: Project tools may be viewed on the main SSM Cardinal Glennon Children's Hospital page under "Products".
As the project was developing, staff identified the need for clinical triggers that help define when a child is dying. In response, they are creating a list of triggers to be used by the hospital nursing staff to identify children who are appropriate referrals. The nurses will also help refine the list of clinical triggers; the final product could be a valuable tool for other pediatric institutions.
Project staff have developed educational modules to train health care providers in the principles of pediatric palliative care; the educational component is designed to be tailored to the discipline and identified need in the community.
Due to their extensive focus group work at the onset of the project, the project has developed and tested workable formats for focus groups for pediatric end-of-life care. This model will be of value to other communities.
The project has developed a protocol for sending annual Mother's Day/Father's day message to families of children who have died.
They have developed a database of literature and tools about pediatric palliative care.
The project has identified significant reimbursement issues as they try to implement seamless care from hospital to community and home. Medicaid does not cover the private duty nursing that allows the seriously ill child to remain at home. Also, the project had a dream of enabling the hospital nurse to transition with the child to the home, but they have not discovered a way to pay for this service.
The Cardinal Glennon project has recognized the importance of targeted communications. They have developed a communications plan; they have a well-designed brochure with pull-out sheets on various aspects of the program. They have a Web site. They have also received some good local media coverage.
For the project to be sustained internally, the project staff report that it's imperative that the hospital administration incorporate the program into routine hospital operation. They also see as essential the on-going education of physicians, residents, nurses, both in-hospital and in the community; planned community education opportunities provided on a continuing basis; incorporation of program education into mandatory education requirements: staff orientation, review classes for experienced staff, Resident education, and Grand Rounds opportunities. They also need the ability to provide Palliative Care Home Care in order to preserve essential continuity of care.
Generalizing the Model
When the project staff was asked, "What will it take to generalize what you have learned?" they replied:
In addition, they stress the need for future grants to sustain the research necessary to continue to identify aspects of "good death" and quality of care for children at the end of life.
Words of Wisdom from the Project
When project staff was asked, "What advice would you give to another institution/team wanting to attempt a project like yours?" their reply included:
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Promoting Excellence in End-of-Life Care is a national program of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.