In 1998 the Robert Wood Johnson Foundation (RWJF) program entitled “Promoting Excellence in End-of-Life Care” issued a call for demonstration projects and four cancer centers were funded to bring hospice principles earlier into the disease trajectory. 25–28
These four centers pilot-tested different models of integrated care and were able to demonstrate feasibility and acceptance by both patients and clinicians.19, 20, 28, 29
Founded on these early successes, numerous cancer organizations have developed standards and guidelines that recommend COPC from the time of diagnosis of a life-limiting cancer.9, 30, 31
According to the National Consensus Project (NCP) for Quality Palliative Care and the National Quality Forum (NQF) Preferred Practices guidelines10, 18
model palliative care programs should address the eight domains of palliative care (see and ). However, it is generally not known to what extent palliative programs are consistent with these guidelines. A recent survey of 71 National Cancer Institute (NCI)-designated cancer centers and 71 non-NCI cancer centers was conducted to determine the availability of palliative care services in cancer centers. In that study the authors did not use the NCP guidelines, but rather defined palliative care services as “the presence of at least 1 palliative care physician”.32
(p. 1056) Using this definition virtually all NCI-designated cancer centers and 50 (78%) of the non-NCI cancer centers surveyed indicated that they had a ‘currently active’ palliative care program.
National Consensus Panel Eight Domains of Quality Palliative Care and Corresponding National Quality Forum Preferred Practices ([BOLDED] ENTRIES REFER TO CORRESPONDING DOMAIN FROM – see )
Consensus Recommendations for Operational Features of Palliative Care Programs
The Center to Advance Palliative Care (CAPC) is a national organization that assists hospitals and health systems nationwide to establish high quality palliative care programs (see www.CAPC.org
). They describe staff models (see ) that developing palliative care programs should consider with inpatient, outpatient, and community (home care) components. In Hui et al.’s survey (33), NCI-designated centers were more likely than non-NCI centers to have an inpatient consultation team (92% vs 56%; <.001) or outpatient clinic (59% vs 22%; <.001). However, few NCI and non-NCI-designated programs had dedicated acute care beds,(26% vs 20%, or institution operated hospice programs,31% vs. 42%, respectively.32
Palliative Care Program Model Options
At the Norris Cotton Cancer Center (NCCC), an NCI-designated comprehensive cancer center serving a mostly rural population in northern New England, a successful COPC program for patients newly-diagnosed with advanced cancer was introduced in 1999 as the RWJF-funded Project ENABLE (Educate, Nurture, Advise, Before Life Ends)
demonstration project. Over the past decade, this program has grown to a full service clinical and research program consistent with the eight domains of the NCP guidelines. From 1999–2001, Project ENABLE served 380 patients (and their caregivers) (deaths=268)12, 28
. The aims of the project were to determine whether: 1) a palliative care intervention could be implemented in three distinctly different cancer care systems (an NCI-designated cancer center, a community ambulatory private practice, and a rural cancer outreach clinic), and 2) 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 an advanced practice palliative care nurse (APPCN) and a series of in-person, group psycho-educational seminars called Charting Your Course (CYC). The APPCN 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 APPCN during cancer center visits and by phone until death. CYC was a four-session seminar series for patients and family members that covered a broad array of topics including learning problem-solving skills, managing symptoms, financial information, complementary therapies / nutrition, family issues, community resources, spiritual issues, decision making and advance care planning, overcoming barriers to communication with clinicians and family, and dealing with unfinished business, loss, and grief. The materials for the seminars were also available in a self-help, manualized format for patients who could not attend the seminars in person.
Despite positive results, a number of problems emerged. First, the authors discovered that one APPCN 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. Although many enrolled patients were interested in attending the CYC seminars, approximately 50% could not attend because of distance, lack of transportation or other limiting physical factors. Consequently, the essential content of the CYC intervention was provided by the APPCN over the phone and by sending materials via mail, both of which turned out to be effective strategies. Based on this experience and the success of other phone-based interventions being tested in the institution’s community practices,33, 34
the authors provided the intervention by phone in a subsequent randomized clinical trial (RCT)35
Second, the intervention was not designed to have the robust clinical interaction offered by an interdisciplinary team. So with generous support from a philanthropic donor, an internationally recognized leader in palliative medicine was recruited to construct an interdisciplinary palliative care clinical team. And finally, the original demonstration project was designed only as a feasibility project. To determine effectiveness relative to patient and family outcomes, the program was subsequently tested in the ENABLE II
RCT (R01 CA101704) (N=322; deaths=231).35
Although the clinical palliative care program at NCCC now extends to non-cancer patient populations this article focuses on the program as it relates to cancer patients.
In the NCCC ENABLE COPC model, illustrated in , patients are managed throughout the cancer trajectory within the context of primary care (A, the outermost area of the diagram). Although oncology care (i.e., anti-cancer treatments) predominates (B, the darker shaded section of the diagram), COPC is introduced at the time of an advanced cancer diagnosis (C, light-colored inner section of the diagram). The theoretical orientation of ENABLE was based on the principles of prevention,36, 37
the World Health Organization (WHO) Continuum of Care model,11
and the team’s prior research using the Chronic Care Model (CCM) to develop ‘informed, activated patients’.34, 38, 40
A CCM-based telephone intervention that focused on patient activation or empowerment, an essential element of a productive clinical interaction, was successful in improving rural primary care patients clinical care and outcomes.34
Consequently, the authors adapted and tested it in the palliative cancer population in the RCT called ENABLE II.25, 28, 35
The ENABLE II intervention targeted the CCM “5 As” of behavior change (a
ssist, and a
In ENABLE II, specially-trained palliative care advance practice nurses implemented a manualized curriculum to educate patients in problem-solving and communication skills. The goal was to empower patients to: 1) share their personal values, life circumstances, and expectations for care with their clinicians; 2) achieve their desired level of participation in decision-making;43
and 3) identify needed information for symptom self-care to manage the predictable biopsychosocial challenges of advanced, life-limiting cancer. As seen within section C of , the CCM “5 As” comprise the palliative care counseling domains: patient activation, decision support, goal setting, problem-solving, and coordination.41
A Model of Concurrent Oncology Palliative Care
As the effectiveness of disease-modifying anti-cancer treatments lessen (section B), the use of palliative care strategies increases (section C). If complex palliative care issues arise, other specialists may be consulted (e.g., Pain Service for placement of an intraspinal pain pump) (section D in the diagram). Towards the end of life, hospice services (section E in the diagram) may be integrated to provide more intensive support in the home and community including bereavement support for family members following the patient’s death. Finally, as family members transition back to primary care, hospice support decreases. Dashed lines in the diagram signify ‘porous’ boundaries between different care systems.
The ENABLE II RCT outcomes showed that compared to a usual care control group, intervention participants had higher quality of life (QOL) and mood on the assessments following the intervention and prior to death. Post-hoc analyses revealed an unexpected finding--intervention participants had a lower risk of death in the year after enrollment (hazard ratio 0.67 [95% CI, 0.496–0.906] p
= 0.009) and a median survival of 14 vs. 8.5 months (p
Although the ENABLE COPC model preceded publication of the NCP guidelines,10
all eight NCP domains were addressed in the model. The program now consists of integrated, interdisciplinary clinical and research teams that provide care via outpatient and outreach clinics, phone-based prospective and follow-up care, and inpatient consultation, including oversight of EOL care on an inpatient oncology/hematology special care unit. As a tertiary center in a predominantly rural environment, the palliative care service collaborates closely with dozens of community-based hospice programs across Northern New England. Additionally, a focused effort, called the North Country Palliative Care Collaborative (NCPCC) (funded by the Tillotson Foundation)44
is comprised of 150 individuals, representing hospitals, home health and hospice agencies, nursing homes, physicians’ practices, community pharmacies, and other social service providers. The goal of the NCPCC is to raise community awareness and to provide palliative and EOL care expertise to address the specific challenges of providing palliative care in rural communities. The knowledge and specialized resources developed will contribute to national standards for best practices in serving rural populations.
The next stage of development for the program is to expand this care model to other oncology patients including those who are not based exclusively at the cancer center, but rather receive their oncology care primarily in their own communities. Although this intervention was originally tested in ‘poor prognosis’ solid tumor patients, a follow up RCT is now testing this approach in patients with hematological malignancies. Research indicates that palliative care is frequently not offered to this population.45, 46
Despite many successes, the program has faced a number of challenges. The three challenges that have been of greatest concern and are common among both developing and mature COPC programs are: 1) establishing structures and processes to identify all appropriate patients and overcome so called ‘gate-keeping’ whereby patients are not referred early for COPC; 2) maintaining consistent, expert palliative care across multiple transitions of care from diagnosis to EOL; and 3) establishing relevant quality indicators to measure outcomes of providing integrated COPC. Each of these challenges is described below in more detail.