Project ENABLE I: A Demonstration Project of Cancer Center and Hospice Collaboration
(Completed, 1998-2001)
Project ENABLE was a demonstration project funded by the Robert Wood Johnson Foundation, designed to improve end-of-life care by "up-streaming" palliative care for cancer patients. The aims of the project were to determine whether:
- A palliative care intervention could be implemented in three distinctly different systems of care (cancer center, community ambulatory private practice, rural hospital).
- The intervention could be initiated at the time of diagnosis of advanced stage cancer. Patients with advanced lung, gastrointestinal, and breast cancer were eligible to participate.
The ENABLE intervention consisted of a palliative care nurse and a psycho-educational seminar, Charting Your Course. The palliative care nurse met with each patient to conduct a broad palliative care evaluation that covered physical, psychosocial, spiritual and functional needs of the patient. She was then responsible for coordinating care within the cancer center and in the patient's community in order to meet these needs. Patients were followed by the palliative care nurse during cancer center visits and by phone until death.
Charting Your Course was a four-session seminar for patients and family members that covered a broad array of topics including managing symptoms, financial information, complementary therapies/nutrition, family issues, community resources, spiritual issues, decision making and planning, communication with physicians and other health care providers, unfinished business, grief and loss, and overcoming barriers to communication. The materials for the seminars were also available in a self-help, manualized format for patients who could not attend the seminars.
Results
The feasibility of implementing Project ENABLE was strongly supported. Comparison of patients enrolled in Project ENABLE with historical controls revealed:
- A larger number of patients dying in their preferred site (primarily home).
- A higher percentage of family members reporting that the patient and providers made plans that ensured that preferences for medical treatment were followed and that these conversations influenced the care provided.
- An increase in the number of patients referred to hospice and a four-fold increase in the average length of stay in hospice. The outcomes demonstrated that an early intervention palliative care program could be implemented in a comprehensive cancer center that focused on aggressive, clinical trials-oriented care.
Despite these positive results, two problems emerged.
- We discovered that one palliative care nurse could not evaluate and follow all eligible patients on a face-to-face basis. The number of patients who were interested in participating in the program and the hectic nature of the oncology clinics made one-to-one interactions for all patients impossible. The palliative care nurse adapted by working with many patients by phone, and this turned out to be an effective strategy. Based on this experience and the success of phone-based interventions in community practices we provided the intervention by phone in our subsequent randomized clinical trial.
- Although many enrolled patients were interested in attending the Charting Your Course seminars, approximately 50% could not attend because of distance, lack of transportation, or limiting physical factors. Consequently, the essential content of the Charting Your Course intervention was provided over the phone and by sending materials via mail.
