“My background is in pain and symptom management and quality-of-life research. Everything I have done for the past 20 years has involved palliative care. I don't want to just give people treatments and watch how they react. I want to know what we can do proactively to help people."Institution
--Tim Ahles, PhD
Project ENABLE (Educate, Nurture, Advise Before Life Ends)
ENABLE cares for patients with advanced-stage lung, breast and colorectal cancers. Approximately 20 patients at any given time are enrolled; catching people at diagnosis means they phase in and out of the program. To date, approximately 230 patients have been enrolled in the program.
E. Robert Greenberg, MD
Marguerite M. Stevens, PhD
Program Mission and Objectives
To educate, nurture and advise based upon patient choice; to bring comfort care into every stage of life-limiting illnesses whether in hospital or in community settings; and to enable patients to die with dignity and grace.
The program will provide timely coordinated clinical care and appropriate palliative care and symptom management for cancer patients with advanced-stage lung, breast and colorectal cancers at three demonstration sites across New Hampshire by:
Program directors selected three diverse sites in which to house and assess ENABLE-a cancer center, a community-based oncology group, and a rural hospital. The sites were chosen for their geographic, clinical, and cultural diversity. An ENABLE palliative care coordinator is located at each site. A palliative care team composed of a pain management specialist, a psychiatrist or psychologist, a hospice or home health liaison, a social worker or case manager, and a pastoral caregiver operates at, or is available to, the three sites.
Patients enter the program in two ways. Physicians can refer patients to the program. ENABLE nurses attend weekly disease management meetings where a committee reviews newly diagnosed patients; the review committee now routinely assesses patients for ENABLE eligibility.
Presently, nurses serve in three different roles for the palliative care team: team leader, caregiver, and educator. As team leaders or nurse coordinators, nurses act as patients' "personal guides" through the system. Rather than concentrate on the patient's next treatment, nurses focus on what the patients need. Following the diagnosis, patients first meet with the nurse coordinator for an assessment of their symptoms, spiritual needs, and psychosocial needs. The patient and nurse develop a plan that stresses continuity of care. The nurses oversee the patient's care plan is carried forward and ensure smooth transitions.
ENABLE nurses are all Advanced Practice Nurses. In coordinating patient care, they manage pain and symptoms themselves, and refer patients to other members of the team as needed. Nurses also meet with each patient and family at every outpatient appointment and provide telephone consultations between appointments. The nurses arrange home care and hospice care. If other nursing services are not available, ENABLE nurses make home visits themselves.
Nurses also conduct "Charting Your Course" workshop support groups for patients and their families. ENABLE designed the workshops to teach patients how to navigate the healthcare system; to discuss advance care planning, individualized decision making and symptom and stress management; and to learn about the stages of dying and issues of life completion and closure.
The project is developing a self-directed version of the workshop for patients and families who cannot attend the sessions. The project will train course facilitators so that the palliative care nurses can spend all their time on patient care and coordination.
Principal Investigators developed Project ENABLE during a propitious time for the Norris Cotton Cancer Center: senior leadership at Dartmouth-Hitchcock Medical Center (DHMC) had just declared palliative care a priority for the institution. Leaders believed the cancer center would be an opportune place to start. They formed a working group and were investigating how to proceed when The Robert Wood Johnson Foundation funding opportunity arose.
Project ENABLE was funded as part of the Norris Cotton Cancer Center's (NCCC) Regional Palliative Care Initiative. The creator's of ENABLE designed the project to help cancer patients without putting an additional burden on physicians. Complicated symptom management can require psychosocial, spiritual and other types of care a physician does not have time to give; the ENABLE team is available to provide or arrange for these services. Instead of relying on one physician, patients rely on a team of experts.
E. Robert Greenberg, MD, Principal Investigator; Marguerite Stevens, PhD, Principal Investigator; and leaders from the Hospice of Vermont and New Hampshire spent significant time securing buy-in from physicians.
Project ENABLE has been well received by patients, oncologists, and DHMC administrators alike. Responding to a demand that is challenging the project's capacity to handle patients, DHMC administrators expanded the program. It is now fully integrated into the cancer center, and physicians from various disciplines have become certified in palliative medicine.
Project ENABLE is collecting outcomes data focused on symptom control and quality of life. Because the NCCC also collected these data before Project ENABLE began, researchers can make before-after comparisons. In addition, the project is conducting after death interviews with family members using a model developed by Joan Teno, MD, Associate Professor of Community Health at Brown University.
Project ENABLE brings in nationally known experts for Grand Rounds.
Project ENABLE works closely with the Hospice of Vermont and New Hampshire and with several local hospitals that have hospice rooms in their facilities; New Hampshire Oncology-Hematology Professional Association (Manchester site); and Androscoggin Valley Hospital (Berlin site). The project is also collaborating with the Foundation for Healthy Communities (Concord), which has a grant from The Robert Wood Johnson Foundation's Community-State Partnership initiative.
The ENABLE project director sits on the Board of Hospice VNH. Concurrently, the director of Hospice VNH attends project ENABLE meetings. ENABLE nurses provide monthly education sessions for VNA and Hospice nurses.
Marketing is still in the developmental stage.
Private philanthropy, grants, institutional support and patient revenue all help fund Project ENABLE.
Tim Ahles and his colleagues hope to expand Project ENABLE via the Hitchcock Alliance, an established network of regional, community-based, integrated health care organizations and professionals providing care in rural northern New England. During the final year of the grant, the team is also working toward integrating Project ENABLE into the Dartmouth-Hitchcock Medical Center's overall palliative care consultation service.
A National Perspective
Elements and Measures of Program Success
Buy-in from the top is key to implementing a successful palliative care program. Ahles notes that the value of Greenberg's commitment cannot be underestimated. Physicians and staff won't support what they don't believe in. They must see the value added for their patients and for themselves. Partnering with other groups-eg hospice-also is essential for success. Cancer centers need the palliative care expertise that hospice has.
What I Wish I'd Known Then
"I wish I'd known how well the program would work. We would have budgeted for more people."
--Tim Ahles, PhD
This descriptive summary is based on an interview conducted by Jane Grant Tougas with project staff in January and February 2001.
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