Promoting Excellence : Sustaining, Exporting & Elevating Grantee Innovations : Improvements in End-of-Life Care in Selected Populations

Name of Project: Improvements in End-of-Life Care in Selected Populations

Institution: University of California, Davis, School of Medicine, Sacramento, CA

PI: Frederick Meyers, MD

Abstract (as described by Project staff)
This project has two major goals. Goal One is to enhance the knowledge and improve the clinical practice of palliative care, resulting in expanded access for underserved populations in three isolated rural areas and in the state female correctional system. Goal Two is to provide palliative care to patients with life threatening malignancies while enrolled in a clinical trial program. These goals are operationalized through three distinct project components:

Rural Areas
Using telemedicine technology and on-site educational initiatives, this component addresses palliative care issues of rural health care professionals in northern California.

Women’s Correctional Facility
Based on a training program designed by the UC Davis palliative care team for the California Department of Corrections Medical Facility at Vacaville, the project is implementing a similar training program for prisons that provide medical care to female inmates.

Simultaneous Care
This component addresses the ethical and clinical dilemmas that arise when the benefits of investigational disease directed therapies are juxtaposed with the benefits of palliative care, through an integrated delivery of care provided by the clinical trials team and a palliative care team. This project is based in the University of California Davis School of Medicine, in collaboration with the West Coast Center for Palliative Education at Davis and the UC Davis Health Research Group.

Brief Synopsis of Program Successes and Challenges

Rural
Recognizing the unique challenges of providing state of the art palliative care in isolated rural areas, the project selected three diverse communities in northern California in which to assess end-of-life needs and implement educational programs to address them. The primary focus is educating geographically distant rural physicians in palliative care, using telemedicine to confer. The project sought to train teams of health providers, providing “live-in” training by a palliative care expert team, and training the providers to incorporate “telepalliation” into their practices. Secondly, the project is attempting to increase community awareness of end-of-life care through community education. Through the community assessment process, staff soon realized that the community’s needs were not always in sync with the goals of the project. And, they ran head-on into the challenges experienced nationally by rural health care delivery systems, including:

Staffing shortages and turnover, particularly for nurses;
Ruthless managed care markets;
Hospitals’ visions of palliative care programs being stifled by harsh economic realities; and
Reimbursement systems ill-designed to meet unique rural needs.

A tremendous amount has been learned in this process. Once analyzed, the ‘lessons learned’ will provide valuable information on why the project’s approach “took” in one community and not in the others. And, thanks to a recent HRSA grant for Telehealth, telepalliation conferences will continue, offering a viable way of providing education to geographically remote clinicians. The project should capitalize on additional opportunities for telehealth that will emerge with increased emphasis on requirements for pain management programs in hospitals.

Women’s Correctional Facility
After an implementation phase wrought with complications, this component of the UC Davis project has taken flight. The project is designed to meet the unique needs of female inmate and, thus far, 80 staff have been trained (custody and medical staff) in concepts of palliative care and 12 inmates have been trained as hospice volunteers. Project staff reports that their efforts have been extremely well received by inmates, with more cautionary acceptance by staff. As with the rural component of the UC Davis project, there is much to learn from the process of overcoming barriers inherent in providing palliative care in correctional settings.

Simultaneous Care
“Simultaneous Care” (a term coined by the project) is the strongest component of the UC Davis triad. Based on a hypothesis that palliative care and disease directed care can be provided simultaneously, the project has created an interdisciplinary team that includes palliative care staff and the investigational chemotherapy group. Achieving unity between these different disciplines has been key to the project’s success and has been accomplished with the strong leadership of Fred Meyers, MD, Chair of the Department of Internal Medicine and project PI. The team meets weekly; clinical trail associates attend and receive support on the provision of palliative care and symptom management. Staff reports that the physicians have favorably accepted program protocols and are starting to view Simultaneous Care as “usual care,” with oncologists embracing palliative care nurses and social workers as part of the team. Patient enrollment in the project has exceeded expectations, reflective of the deep sense of collaboration that has been established with the clinical care coordinators. Initial data indicates that patients enrolled in Simultaneous Care have higher scores in quality of life assessments than patients in the comparison group.

The project is also studying the psychological aspects of investigational disease directed therapy patients willingness to engage in end-of-life discussions. This work is spearheaded by social worker John Linder, LCSW, a recent PDIA scholar.

Project staff is interested in expanding Simultaneous Care in various ways. They envision exporting the model to non-cancer patients. And, they clearly recognize their current project as a pilot project (with intervention and comparison groups) and wish to expand upon their current study by designing a randomized control study to obtain more quantitative data.

Policy Issues
Various policy considerations have been raised by the three project components:

The need to amend current hospice policy to enable hospice to be more adequately adapted to rural health care systems;
The need to create a national ‘think tank’ on rural medicine and end of life care, involving rural health economists and palliative care experts;
The need to develop an agenda for the future of simultaneous care in conjunction with other cancer centers.

Perhaps the strongest policy implication to emerge from this project is recognition that it is neither ethical nor acceptable for IRBs to approve Phase 1 and Phase 2 studies without offering palliative care as a treatment option. It is not acceptable for patients volunteering for science to have to choose between participation in clinical trials to the exclusion of hospice care.

Exportable Products/Tools
The project recently submitted a proposal to use their $15,000 communications grant to develop a manual to be shared with other cancer centers regarding their experience with their Simultaneous Care program. The manual will include both the standardized nursing intervention and the social work intervention, as well as a training plan that describes the project’s educational component, which other cancer centers can use to train their staff in the model. The manual will also include a history of the measurement tools used in the project, including the selection process of the domains to be measured, the scripts developed for administering the tools, and the results from field-testing of the various instruments.

They are also planning to use the funds to compile data on the fiscal impact of their program, including a comparison of length of stay of intervention patients and comparison patients in hospice, comparison of the time spent receiving therapy on clinical trials of both groups, billable revenue generated by nursing and social visits, and the utilization of hospital resources by both groups.

Internal Sustainability
When project staff was asked, “What will it take to sustain what you have learned?” they responded:

Our project needs time to analyze our experience over the course of the grant period. Based on our findings, sustainability will occur once we have had the opportunity to develop manuscripts and articles that will inform our colleagues and institutional leadership of our experiences.
In that our projects are demonstration or pilot studies, it would be interesting to have a longer funding period to develop the project that has the most potential.
To sustain what we have learned we need to continue to identify physician, nursing, and social work champions at our institution who are interested in joining us to carry forward our work in the field of end-of-life care.
To sustain our project, we need a combination of extramural and institutional support.

Generalizing the Model
When project staff was asked, “What will it take to generalize what you have learned?” they replied: Through ongoing evaluation and analysis of our projects, we have identified several concepts and experiences that can be generalized to other situations and settings. Areas that we have findings include: rural outreach, education of rural practitioners, hospices in correctional settings, working with correctional administrators, pilot project design and methods, end-of-life measurement instruments, and data collection methods.

Words of Wisdom from the Project
Rural Projects

Target areas if possible where you have ties to physicians - you need a physician advocate on site to open doors for you;
Train entire practices in end-of-life care;
Provide follow-up reinforcement of ideas using unique models - we followed up with each community with Telemedicine Case Conferences; and
Allow rural communities to develop agenda for training; to provide case conference material; to play a major role in the training provided to their community; to plan and carry out subsequent training.

Corrections

Determine early on in the project who is an ally for your cause;
Do not delay training or any other activity (strike when the iron is hot);
Know that when there is change in governorship that you may have to start over again with agency administrators; and
Small successes working with a correctional system are actually huge successes - celebrate and write-up your accomplishments.

Simultaneous Care

Institutional leadership was the key to our success in this area;
Communication that took place with various groups within our Cancer Center, and the one-on-one communication was extremely valuable to the project. The project was presented at Grand Rounds, various Journal Clubs, and staff meetings. Also, each oncologist met with our simultaneous care team to discuss the project;
Three months of planning assisted us in fine-tuning the project prior to it being implemented on a larger scale; and.
The UC Davis Center for Research in Primary Care provided us with expertise in both quantitative and qualitative research design.

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Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.