Project ENABLE (Educate, Nurture, Advise Before Life Ends)
- Need: To enhance palliative care access to rural patients with advanced cancer and their family caregivers.
- Intervention: Project ENABLE consists of: 1) an initial in-person palliative care consultation with a specialty-trained provider and 2) a semi-structured series of weekly, phone-delivered, nurse-led coaching sessions designed to help patients and their caregivers enhance their problem-solving, symptom management, and coping skills.
- Results: Patients and caregivers report lower rates of depression and burden along with higher quality of life.
Evidence-Based (About evidence-level criteria)
Palliative care is often limited in resource-scarce rural communities. While palliative care has traditionally been offered only after exhausting curative treatment options, a growing number of clinical trials demonstrate that offering palliative care at the time of diagnosis and concurrent with standard cancer treatments can help improve patients' symptoms and help them and their caregivers plan for an unpredictable future.
Project ENABLE (Educate, Nurture, Advise Before Life Ends) provides palliative care to patients with advanced cancer and their caregivers. The project began in rural New Hampshire and Vermont and has recently expanded to the South.
History of Project ENABLE:
Project ENABLE I (1998-2001) was a Robert Wood Johnson Foundation-funded demonstration project involving 380 patients at the Norris Cotton Cancer Center (NCCC) at Dartmouth-Hitchcock Medical Center in the rural community of Lebanon, New Hampshire. Its goals were to provide a supportive care intervention to patients at the time of advanced cancer diagnosis. A nurse coach met with patients to facilitate a 4-session seminar called Charting Your Course, which covered patients' and families' physical, spiritual, and functional needs. The nurse coach also coordinated care with the cancer center and in the community. A self-help manual was available for patients who could not attend the seminars. Family caregivers were invited but not required to attend.
ENABLE II (2003-2008) was a randomized controlled trial (RCT) funded by the National Cancer Institute (NCI). Building on ENABLE I, including adapting the in-person intervention to one delivered by telephone, the study's aim was to evaluate the efficacy of the ENABLE model to improve quality of life, symptoms, and mood for patients with advanced cancer compared to standard care. Over 300 patients enrolled over 4 years: Half of the patients received ENABLE and half received usual cancer care. Family caregivers did not receive a specific intervention but were invited to participate in patients' in-person palliative care consultations.
ENABLE III (2010-2013) was funded by the National Institute of Nursing Research (NINR). This RCT tested the timing of the ENABLE care model and included a parallel intervention component consisting of phone-delivered nurse coaching sessions for family caregivers. Patients and their caregivers were randomly assigned to receive the intervention immediately or 12 weeks after enrollment. Nurse coaches delivered a 6-session phone-based intervention to patients and a 3-session phone-based intervention to caregivers. The patient and caregiver each had a different nurse so that each participant could share questions or concerns freely. Nurses maintained monthly contact with patients and caregivers after the sessions were completed.
Nurse coaches provide Charting Your Course sessions for patients and caregivers. These sessions cover topics such as symptom management, self-care, decision-making, and advance care planning. While palliative care services are considered standardized, they can be tailored to meet the individual patient's and caregiver's needs.
- Compared to national and regional data, a larger number of participants in ENABLE died in their preferred site. (For many participants, this meant dying in their own home.)
- A higher percentage of ENABLE family members reported that the patient and providers worked to ensure that patient preferences for medical treatment were followed.
- Patients who received the intervention reported lower depressed mood and higher quality of life.
- The study was listed as a Research-tested Intervention Program (RTIP) by the National Cancer Institute.
- Kaplan-Meier survival rates one year after enrollment were 63% for those in the early intervention group, compared to 48% for those who began intervention 3 months later.
- Caregivers in the early intervention group had lower depression and stress burden scores.
Project ENABLE was recently adapted to provide palliative care to patients with heart failure and their caregivers. This ongoing NINR-funded study, called ENABLE: CHF-PC (Comprehensive Heartcare for Patients and Caregivers), is being conducted in Alabama but includes patient and caregiver participants across the Deep South.
ENABLE: CHF-PC combines an in-person palliative consultation with a palliative care specialist and phone-based intervention sessions: 6 for patients and 4 for caregivers. The sessions also follow "Charting Your Course," and services can be tailored to meet a family's unique needs.
For more information about Project ENABLE:
Bakitas, M.A. (2017). On the Road Less Traveled: Journey of an Oncology Palliative Care Researcher. Oncology Nursing Forum, 44(1), 87-95. Article Abstract
Bakitas, M.A., Elk, R., Astin, M., Ceronsky, L., Clifford, K.N., Dionne-Odom, J.N., ... & Smith, T. (2015). Systematic Review of Palliative Care in the Rural Setting. Cancer Control, 22(4), 450-464.
Bakitas, M.A., Tosteson, T.D., Li, Z., Lyons, K.D., Hull, J.G., Li, Z., ... & Ahles, T.A. (2015). Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. Journal of Clinical Oncology, 33(13), 1438-1445.
Dionne-Odom, J.N., Azuero, A., Lyons, K.D., Hull, J.G., Tosteson, T., Li, Z., ... & Bakitas, M.A. (2015). Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients with Advanced Cancer: Outcomes from the ENABLE III Randomized Controlled Trial. Journal of Clinical Oncology, 33(13). 1446-1452.
Dionne-Odom, J.N., Kono, A., Frost, J., Jackson, L., Ellis, D., Ahmed, A., ... & Bakitas, M. (2014). Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers. Journal of Palliative Medicine, 17(9), 995-1004.
Bakitas, M., Lyons, K.D., Hegel, M.T., & Ahles, T. (2013). Oncologists' Perspectives on Concurrent Palliative Care in a National Cancer Institute-Designated Comprehensive Cancer Center. Palliative & Supportive Care, 11(5), 415-423. Article Abstract
Maloney, C., Lyons, K., Li, Z., Hegel, M., Ahles, T.A., & Bakitas, M. (2012). Patient Perspectives on Participation in the ENABLE II Randomized Controlled Trial of a Concurrent Oncology Palliative Care Intervention: Benefits and Burdens. Palliative Care, 27(4), 375-383.
O'Hara, R.E., Hull, J.G., Lyons, K.D., Bakitas, M., Hegel, M.T., Li, Z., & Ahles, T.A. (2010). Impact on Caregiver Burden of a Patient-Focused Palliative Care Intervention for Patients with Advanced Cancer. Palliative & Supportive Care, 8(4), 395-404.
Bakitas, M.A., Lyons, K., Hegel, M., Balan, S., Brokaw, F., Byock, I., ... & Ahles, T. (2009). Effects of a Palliative Care Intervention on Clinical Outcomes in Patients with Advanced Cancer: The Project ENABLE II Randomized Controlled Trial. Journal of the American Medical Association, 302(7), 741-749.
Bakitas, M., Stevens, M., Ahles, T.A., Kirn, M., Skalla, K., Kane, N., & Greenberg, E.R. (for Project ENABLE staff). (2004). Project ENABLE: A Palliative Care Demonstration Project for Advanced Cancer Patients in 3 Settings: One Project of the Robert Wood Johnson Foundation's "Promoting Excellence in End-of-Life Care." Journal of Palliative Medicine, 7(2), 363-372. Article Abstract
One barrier for a palliative care program is the difficulty in securing buy-in from patients and providers. Some providers, for example, worry that starting a conversation about palliative care will make patients believe that the provider is giving up on them. Educating patients and providers about the benefits of early palliative care is an important part of Project ENABLE.
A large American Cancer Society-funded implementation study is currently in place to better understand how to best integrate the ENABLE model of early palliative care. Early lessons learned from this study include:
- The importance of administrative and palliative care leadership buy-in, support, and commitment
- The need for oncologist champions
- Protected time for coaches to deliver the program
- The need for strategically incorporating ENABLE model elements into existing work-flow patterns
- A referral trigger that does not rely solely on oncologist referral
Hospice and palliative care
National/Multi-State, Alabama, New Hampshire, Vermont
May 19, 2017
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