Promoting Excellence : Sustaining, Exporting & Elevating Grantee Innovations : Project ENABLE

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Name of Project: Project ENABLE (Educate, Nurture, Advise, Before Life Ends)

Institution: Dartmouth-Hitchcock Medical Center, Norris Cotton Cancer Center, Lebanon, NH

PI: E. Robert Greenberg, MD

Abstract (as described by Project staff)
Project ENABLE provides integrated clinical care for cancer patients based on ongoing needs assessments that pay careful attention to palliative options as well as offering patient support seminars at three demonstration sites in New Hampshire. Each site has developed its own clinical palliative care team (either on site or through distance-intervention strategies) that serves patients according to their preferences, values and expressed needs, including transition and continuity of care.

Project ENABLE combines the clinical expertise of NCCC with Hospice of Vermont and New Hampshire to empower patients and their families to take full advantage of clinical and other palliative services from the time of diagnosis.

Brief Synopsis of Program Characteristics, Successes and Challenges
This well-run project is located in a strong institution, with capable research and program staff, and with supportive, influential institutional leadership.

Project ENABLE is implementing a similar model in three distinct venues selected for geographic, clinical and cultural diversity. The venues are NCCC itself, a community-based oncology group, and a geographically remote rural community several hours from, but served by, NCCC. The staff has flexibly adapted the program in these various communities, respecting community patterns and team dynamics.

The heart of the model is the Palliative Care Coordinator (PCC), a nurse who is involved in the patient’s care from their entry into NCCC and who is viewed as part of the treatment team. Of note, newly designed Disease Management Group brochures mention palliative care as part of their service package and the palliative care staff is included in the team picture in the brochure. This is indicative of the extent to which palliative care is now viewed as regular care for patients with advanced lung, GI and breast cancer at NCCC.

The project has attempted to restructure how care is delivered by infusing palliative care into existing practice patterns whenever possible. For example, palliative care coordinators attend the time-honored weekly disease management meetings, thus encouraging palliative care to be part of business as usual rather than an add-on service. This weaving of palliative care into usual care, with PCCs available to assist clinicians with day-to-day patient needs, has served to significantly increase physician buy-in.

The project has a strong emphasis on patient education and empowerment. They have developed a 4-part educational program, “Charting Your Course: A Whole Person Approach to Living With Cancer” to assist patients and families navigate through the health care system, open meaningful dialogue between patient and provider, and assist with advance care planning. Staff has recently expanded this concept by developing self-directed modules for those patients/families unable to attend the workshops.

Program outcomes were originally designed to be assessed according the four-points of the Dartmouth CQI “Value Compass,” which looks at clinical outcomes, quality of life, satisfaction and cost. Referrals to the project exceeded projections.

Exportable Products/Tools
In addition to “Charting Your Course,” project staff has developed:

Policy Issues
ENABLE staff collaborates with hospices throughout Vermont and New Hampshire and, in doing so, report challenges inherent in the provision of end-of-life care in rural areas: Several communities in the catchment area do not have sufficient hospice coverage to ensure that patients can be cared for at home; some hospice nurses lack specific skills or expertise; rural hospices have precarious financial situations due to insufficient reimbursement.

Reimbursement issues also affect community-based oncology providers who note that the current payment structure dissuades them from devoting time to palliative care. Dr. Danny Simms stated, “There are more incentives to give chemo than to give care.”

Staff has echoed concern raised by other Promoting Excellence cancer center grantees: It is neither ethical nor acceptable for IRBs to approve Phase 1 and Phase 2 studies without offering palliative care as a treatment option. It is not acceptable for patients volunteering for science to have to choose between participation in clinical trials to the exclusion of hospice care.

Project staff stresses the need for NCI to fund research in palliative care and to place palliative care experts on proposal review panels.

Communications
NCCC has a page on its website devoted to Project ENABLE: www.dartmouth.edu/~nccc/palliaitve.htm. The Winter ‘99 edition of Dartmouth Medicine featured a story on the project.

This project is nested in a large network that can replicate aspects of ENABLE. The lessons learned and best practices from this project can likely be marketed and exported to other venues in the large Hitchcock Alliance. Marguerite Stevens plans to present information on ENABLE at a meeting of Hitchcock Alliance CEOs.

A remarkable aspect of this project is the involvement of community-based oncologists. In addition to addressing sustainability of the project within NCCC, it is equally important to discuss prospects for sustaining palliative care services at New Hampshire Oncology-Hematology Professional Association. It’s crucial to broadcast the experiences of these community physicians to other community oncologists and to discover whether other community-based oncology groups can feasibly adopt the model.

When project staff was asked what it would take to sustain what they have learned, they replied:

Generalizing the Model
When project staff was asked what it would take to generalize what they have learned, they replied: “Money to lobby for better funding and money for social marketing to other institutions and also larger studies to get statistical proof of efficacy.”

Words of Wisdom from the Project
When project staff was asked what advice they would offer to another institution considering implementing a similar project, they replied:

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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 PromotingExcellence.org for more resources.

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