Project ENABLE: A Palliative Care Demonstration Project for Advanced Cancer Patients in Three Settings

Abstract

At the end of the 1990s, based on data from two major studies of end-of-life (EOL) care, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), and the Hospitalized Elderly Longitudinal Project (HELP), a consensus panel report documented the problems and needs of patients with cancer and other life-limiting diagnoses at end-of-life. A national program of The Robert Wood Johnson Foundation (RWJF), Promoting Excellence in End-of-Life Care, attempted to address these needs by funding demonstration projects to test various approaches to improve identified deficits. In 1998, Project ENABLE (Educate, Nurture, Advise Before Life Ends), one of four RWJF-funded cancer center/hospice collaborations of the Promoting Excellence program, began to address these issues. The jointly sponsored Norris Cotton Cancer Center (NCCC)/Hospice of Vermont and New Hampshire (Hospice VNH) program provided an integrated approach to the management of life-limiting cancer. Project ENABLE was aimed at alleviating the symptoms of disease and treatment, enhancing clinician and patient/family communication, offering support for families, friends and other caregivers, addressing emotional and spiritual needs of dying people and providing conceptual and administrative structure to provide EOL care consistent with patients' values and preferences. Although patient symptom data is not yet available, other measures of success included improved access to hospice and palliative care services from the time of diagnosis and a sustained palliative care program at two of the three sites in which the program was implemented.

Proxy perspectives regarding end‐of‐life care for persons with cancer

“…22 As a quality improvement initiative, the project was designated as exempt from requiring approval by our institutional review board; however, verbal consent of the family proxy was obtained before conducting this telephone-based interview.…”

Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

“…Patient and caregiver efficacy outcome domains and measures were selected based on our prior cancer clinical trials; 46,47 however the quality of life and symptom burden tools were replaced by ones that were HF specific. Participants completed outcome measures by telephone at enrollment (baseline) and again at approximately 12 and 24 weeks after enrollment.…”

“…1), we embarked on translating our successful early, concurrent PC model, ENABLE (Educate, Nurture, Advise, Before Life Ends) [32][33][34] for the HF population. ENABLE is a phone-and manual-based intervention conducted by advance practice PC nurse coaches with patients and their primary family caregivers.…”

“…3). Because ENABLE is based on the CIC, which is also the basis of some of the most successful HF disease self management programs demonstrating improved disease-focused HF self-management and survival outcomes, 30,[33][34][35][36][37][38][39][40][41][42] we were confident that it would be adaptable to this very different illness trajectory.…”

Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning

“…As the U.S. population continues to age, there is a growing need to improve the process and technologies of advance care planning for older adults with chronic disease to ensure that the care they receive is aligned with their personal preferences, priorities, and values (Sherbourne & Stewart, 1991;Bernard, 1994;Doing Qualitative Research: Methods for Primary Care, 1999;Kroenke & Spitzer, 2002;Horsman, Furlong, Feeny, & Torrance, 2003;Bakitas et al, 2004;Patel, Sinuff, & Cook, 2004;Callahan et al, 2005;Katon et al, 2005;Austrom et al, 2006;Callahan et al, 2006;Spitzer, Kroenke, Williams, & Lowe, 2006;S. R. Counsell et al, 2007;Department of Health, 2008;Steven R Counsell, Callahan, Tu, Stump, & Arling, 2009;Glaser & Strauss, 2009;Baughman et al, 2012;Working Group on Health Outcomes for Older Persons with Multiple Chronic Conditions, 2012;Cottingham AH, 2014;Kirolos et al, 2014).…”