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Project ENABLE (Educate, Nurture, Advise, Before Life Ends) brought palliative care to advanced cancer patients at a major cancer center, and it also showed that these services can be integrated into community-based oncology practices where most cancer patients receive their care. The program included workshops that gave patients and their caregivers tools to help manage their illness.
The project was a partnership of Dartmouth's Norris Cotton Cancer Center (NCCC), an NCI-designated Comprehensive Cancer Center that serves northern New England, and the Hospice of Vermont and New Hampshire (Hospice of VNH). NCCC treats about 2,000 new patients each year but, like many cancer centers, until recently offered few palliative care services. With a grant from the local Byrne Foundation, NCCC and Hospice of VNH formed an NCCC-based palliative care service with the long-term goal of expanding palliative care and hospice services to NCCC patients and others in the region. Project ENABLE was their first major effort to provide an integrated model of care.
Project ENABLE was integrated into NCCC and two community sites:
Project ENABLE was so successful in the physician practice and at the cancer center that those sites continued to provide concurrent care after the demonstration project ended. The rural hospital site encountered unanticipated obstacles, including the departure of the CEO, conflicting time demands on the palliative care coordinator and an economic downturn in the area, that kept the program from becoming well established there. Because of these difficulties, the question of whether such a program can work at a rural site, where there are relatively few patients with advanced cancer, remains unanswered.
The "either-or" choice between disease-modifying cancer treatment and palliative care to enhance comfort and quality of life has been proven to be arbitrary and unnecessary.
A New Model of Care Emerges
Project ENABLE targeted patients with the most common cancers and poor prognoses. Patients participating in the project had been newly diagnosed with advanced lung cancer, metastatic gastrointestinal cancer or metastatic breast cancer. All were expected to die from their disease, probably within two years.
These patients and their caregivers were given access to a broad range of education and palliative care, including services related to life completion, from the time of their diagnosis. Specifically, the program had three major components. First, it placed a palliative care coordinator (PCC) at each of the three sites to provide case management-like services. The PCCs were experienced advanced practice oncology nurses with training in palliative care who had ties to their practice site. Second, Project ENABLE aggressively addressed pain and symptom control with a baseline assessment and ongoing monitoring of all patients. Third, the project offered patients and caregivers a series of seminars, four in one month, called "Charting Your Course." The seminars were tailored to each site and aimed to enable participants to take charge of their illness, helping them navigate the health system, make decisions and better manage symptoms and emotional stress.
During a four-month pilot study preceding implementation of the program, staff tested proposed study procedures and made presentations to oncologists and oncology practice staff. They held nine focus groups, one each with patients, families and clinical providers at the three sites. They also collected data on 91 patients to serve as historical controls, according to Marie Bakitas, M.S., A.R.N.P., C.H.P.N., a PCC who was also on the management team of Project ENABLE.
Throughout the planning process and the project, the PCCs, who came from acute care cancer settings, and the hospice staff worked closely together to effectively integrate the hospice services at the sites. They learned from each other. For example, hospice staff helped the PCCs become more comfortable communicating about difficult topics, including fears of the future, loss and grief. In turn, the PCCs helped hospice staff become better informed about intensive cancer care. Bakitas recalls that some hospice staff initially thought radiation and chemotherapy were always aggressive treatment and questioned their use. Through "symptom of the month" seminars and a variety of teaching formats the PCCs explained that these treatments are often used to alleviate symptoms - a form of palliative care - so the goals for the oncologists and hospice staff were well aligned.
Palliative care coordinators identified potential patients for the project by attending tumor board meetings and disease management groups, reviewing daily appointment lists and asking physicians and nurses for referrals. The coordinators contacted patients by phone, at a clinic appointment or in the hospital within two weeks of identification to ask if they would like to participate, according to Bakitas. In all, the coordinators recruited 253 patients for the intervention.
Early on, the PCCs helped Project ENABLE patients identify their health care team, which included their oncologist, primary care provider and nurse practitioner as well as community resources, including social workers, spiritual support, hospice and home care and friends. By establishing a team at the beginning, project staff hoped to smooth the transition from one stage of illness to another. The PCCs maintained close contact with patients and their families. They assessed their needs and wishes and shepherded them through the complexities of their cancer care, including hospice and home care. The PCCs assessed not only for physical symptoms, but also for the patient's and family's psychological, emotional and spiritual issues. They attended oncology appointments with the patients and followed up with phone calls.
"Charting Your Course"
The "Charting Your Course" workshops were an important part of Project ENABLE. This self-care course helped patients and their families take charge of their illness and make choices reflecting their values and preferences. Staff modeled the workshops on childbirth classes, which over the last few decades have transformed the childbirth experience by enabling families to take control of the birthing process and by better preparing future parents. Most cancer patients have spent little time thinking about death and the practical steps they need to take, such as preparing a living will and signing a durable power of attorney, said Tim Ahles, Ph.D., one of the project's directors. "Prior to their diagnosis, patients haven't been thinking about how they're going to deal with advanced stage cancer," Ahles said. "Rather, they were thinking about their next vacation or retirement." The seminars helped people become prepared for the difficult new reality they faced.
The "Charting Your Course" workshops provided information and practical tools for dealing with the health care system in a supportive, interactive environment, said Bakitas. "For example, in our session on symptoms, I asked patients and their families to talk about symptoms they experienced or were fearful of having and then asked them Ďare you heard when you bring these to the doctor's office?'" She said the workshops taught patients strategies for communicating with their health care providers about their symptoms. All participants received diaries to monitor symptoms and learned ways to rate discomfort and language to use in reporting symptoms that would be heard by their providers. "Our message was that you need to communicate to your providers that this is important to you and get the resources to deal with it," said Bakitas.
"Charting Your Course" participants enthusiastically endorsed the workshops, giving them an average score of 1.5 on a scale of 1-5, with 1 being "excellent." When asked in a separate evaluation if they were likely to use the information they acquired, most answered, "Yes, definitely." Comments were also positive. One participant wrote, "Keep those workshops going. They made us talk about things we never would have touched. They really helped."
Not all patients were reached by the workshops. Only about a third - or 90 - of the eligible patients and families participated. A few patients were too ill to attend, and because New Hampshire is a rural state, many lived far away from the workshop sites. The PCCs were able to provide the material one-to-one to some people who could not attend. Project staff also created a CD-Rom with material from the workshop and put it on the Web to make the information accessible to more patients and caregivers.
Integrating Palliative Care Within Community-Based Oncology Practice
Although most cancer patients receive their treatment from oncologists in the community rather than at comprehensive cancer centers, community oncologists traditionally are not able to offer comprehensive palliative care. Therefore, the results of Project ENABLE's community oncology practice site provide especially important and heartening news.
The Project ENABLE palliative care coordinator at the six-physician practice based in southern New Hampshire - NHOH - was familiar with the practice and quickly became an integral part of the oncology staff. "This integration of care was really innovative for a private practice," Bakitas said. "Patients and families communicated about what a benefit it was to have a person who could spend more time with them, and someone who could follow up even after the last chemo treatment when patients weren't coming to the office much anymore."
Dr. Danny Sims, an oncologist at NHOH and medical director of a hospice in Manchester also observed the project's positive effects on patients. "People who have a great deal of anxiety around certain issues could get help either through the coordinator or the workshops. Patients really need this type of support. If we don't provide it, it can interfere with their care." He said it also helped him do his job. "In many ways, it made my life easier. Ultimately, it helps us as oncologists because patients can be more focused on their treatment, and we aren't also dealing at the same time with all of the other outstanding issues."
Sims and his colleagues were so impressed by the project that they continued to pay the salary of the palliative care coordinator after the Promoting Excellence grant ended. The coordinator recently left for another position, but the practice plans to maintain the position. Since the physicians feel they have capacity to address pain and related symptom management using clinicians in their practice, Sims said they may try filling the position with a social worker who can bring needed expertise in psychosocial issues. Project ENABLE staff feel that the professional discipline of a palliative care coordinator, such as whether the person comes from a nursing or social work background, must be matched to the particular circumstances and practice setting.
Integrated Care at the Cancer Center
The intervention was also well received at the Norris Cotton Cancer Center. A key factor there, too, was employing familiar, experienced, respected ENABLE staff, Bakitas said. "These were people the doctors had worked with and trusted so there was credibility when we approached doctors."
Some clinicians had reservations at the start of the study, Ahles said. "Some staff were concerned that talking about end-of-life issues with patients would upset and depress them because they're not thinking about dying. In reality they are thinking about it. One of the most important things we learned is that patients do know what's going on, and they can be realistic. They want treatment for their cancer and also want to plan ahead for themselves and their families."
Project ENABLE patients told their providers that they valued the interventions. "Our best press was the patients," Ahles said. "Most liked the program and many went back to their doctors and thanked them for getting them involved."
Palliative care services have found a place at the NCCC. Cancer center providers and administrators expanded the program from the palliative care coordinators to a new palliative care consultation service that has a team of two full-time nurse practitioners and six part-time physicians. The care team provides inpatient and outpatient consultation and palliative home and hospice care - 24 hours a day, seven days a week - to patients with life-limiting cancer at NCCC and throughout the Dartmouth-Hitchcock Medical Center. The palliative care consult service is supported primarily by the grant from the Byrne Foundation with 10% of its revenues coming from third-party reimbursements.
NCCC received a follow-up five-year $1.8 million National Cancer Institute grant in January 2003 to continue their work in providing concurrent care.
"This project was part of a very important mix that got Dartmouth off the mark to decide to sustain and carry the cost of a palliative care program for the whole institution," said Dr. E. Robert Greenberg, principal investigator and former director of the Norris Cotton Cancer Center. "Now the institution is committed to funding this long term. There is recognition that it is not going to make money, but it is something that we need to do to provide good care."
The four Charting Your Course workshops address such issues as:
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.