Promoting Excellence : Living and Dying Well with Cancer : What Have We Learned?

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Patient in bed surrounded by caregivers who are touching him.The success of these projects summons us to a new era in cancer care. It is a future in which attention to comfort, quality of life and family support is simply part of comprehensive cancer treatment. This vision of a seamless continuum of care has been elaborated by the Institute of Medicine and leading professional organizations, such as the American Society of Clinical Oncology. These innovative demonstration projects, supported by The Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care program, have now shown that this bright vision is achievable and well within reach.

The four Promoting Excellence projects featured in this report were conducted in state-of-the-art academic cancer centers and included community oncologists and local home health and hospice providers. They integrated key services of palliative care within busy oncology practices. Although the project designs varied across sites and were matched to the needs of local partners, they had important elements in common: At each site an expanded interdisciplinary team of clinicians attended to physical symptoms and psychosocial distress and helped develop a plan of care consistent with the patient’s and family’s values and treatment preferences. Plans of care included a crisis prevention and early crisis management plan, and a team member was available 24 hours a day to respond to questions or problems and provide support to family caregivers. Cancer patients and their families were offered spiritual support and counseling with issues of life completion and life closure and families were extended bereavement support.

Differences between these two modes of care were not insurmountable, as some may have suspected. Indeed, the clinician-researchers found that palliative care and oncology treatment are more effective together than either is alone. Providing psychosocial and spiritual support, including discussions of issues pertaining to the end of life, did not detract from patient compliance with ongoing anti-tumor treatments. On the contrary, several clinicians observed that intervention group patients seemed better able to tolerate the rigors of both therapeutic and cancer research protocols.

Concerns that the expanded menu of services of these integrated models would prove too costly also were not borne out. Instead, although the results are all preliminary, they have consistently been in the direction of cost savings, largely corresponding to diminished use of hospitalizations.

Referrals to hospice and length of hospice service rose at all sites. This is a positive outcome, reflecting expanded access to an array of palliative services for which patients and their families are eligible.

Conclusions

These projects each built new delivery models that proved to be feasible, well accepted and clinically effective. Although results are still emerging, an important conclusion can be drawn. 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.

"These results demonstrate that concurrent palliative care and treatment are possible, are desirable, are implementable and they work," said Dr. Kathleen M. Foley, Professor of Neurology at Cornell University and attending Neurologist at Memorial Sloan Kettering Cancer Center, who is a member of the Institute of Medicine and co-author of the NCPB report.

The message from the Promoting Excellence cancer projects is hopeful, and it is clear. As Ellen Stovall, President and CEO of the National Coalition for Cancer Survivorship, states: "The simplicity of these lessons poses a question about providing care any differently."

"These results demonstrate that concurrent palliative care and treatment are possible, are desirable, are implementable and they work."
- Dr. Kathleen M. Foley, Memorial Sloan Kettering Cancer Center

Where Do We Go From Here?

These projects build on a foundation of clinical best practices and a vision defined by leading voices in American health care. In turn, the success of these projects provides a foundation of experience from which to expand. These institution-based demonstrations form a springboard for larger, population-based studies into the clinical and health service delivery impact of concurrent oncology treatment and palliative care.

Of course, regulatory and reimbursement change will also be required in order to realize the potential revealed by these demonstrations. As the NCPB report Improving Palliative Care for Cancer recommended, the Centers for Medicare and Medicaid Services can now support larger demonstration projects aimed at identifying reimbursement structures that support integrated care.

The findings from these four demonstration projects also add fuel to other recommendations of NCPB’s seminal report that called on the National Cancer Institute to assume a central role in advancing palliative care. Many cancer care providers say they would like to integrate palliative services into their cancer care but need the kind of support and training that NCI can provide. The National Cancer Institute has shown a new openness to support research into palliative domains of care, as reflected in the recent NCI grants awarded to the project teams reported here. Much more is needed, and the NCPB report offers a roadmap for work ahead.

"The simplicity of these lessons poses a question about providing care any differently."
- Ellen Stovall, National Coalition for Cancer Survivorship

As critically important as research and changes in regulations and reimbursement are, the principal challenges and core changes required are cultural. Oncology and palliative care have been assumed to be diametrically opposite approaches for so long that many professionals in both fields assume they are incompatible. We know now that apparent clinical or service delivery barriers to comprehensive palliative and oncology care are all surmountable. A vision of integrated whole person and family care must guide future work in clinical care, in health service delivery, in quality improvement, in research, in policy work and in public education and consumer advocacy.

"We worked hard to build a platform for future population-based research and policy initiatives to expand access to services and improve quality of care," said Dr. Ira Byock, Director of Promoting Excellence in End-of-Life Care. "This base of programmatic experience and early evidence presents both challenges and opportunities that are broadly shared,” he added. “Barriers can be overcome with creative, collaborative efforts."

These demonstration projects offer an enticing glimpse of truly comprehensive cancer care – care that offers cutting-edge anti-cancer treatment while addressing with equal intensity patients’ comfort and well-being. The hopeful results from these models encourage us to collaborate in creating a future in which oncology care encompasses and routinely provides a continuum of palliative services. By expanding and refining the work reported here, we can advance along this high road and realize this bright future.

10 Essential Ingredients for Building Successful Palliative Care Programs

  1. A well-defined vision that
    • Advances the institution's mission
    • Encompasses a comprehensive definition of palliative care

  2. A well-planned implementation strategy that is
    • Manageable in scope
    • Consistent with available human and financial resources

  3. Unwavering support from clinical and administrative leaders willing to
    • Champion the program
    • Help secure operational resources

  4. Ongoing efforts to bridge the differences between palliative and acute care clinical cultures that
    • Entail learning on both sides
    • Integrate experienced staff with diverse expertise, including psychosocial and spiritual care

  5. A focus on making "the right way the easy way"
    • Responding to workday needs of time-pressured clinicians and management
    • Redesigning operations to embed and trigger palliative practices in daily routines

  6. Ongoing education, support and attention to team building for clinicians and system personnel to
    • Ease adoption of innovation
    • Strengthen clinical interventions

  7. An assurance that palliative care teams have authority to carry out their clinical recommendations and interventions for patient care and have safe havens to discuss problems and ideas


  8. Attention to diverse ethnic and religious cultures of individual patients and families through
    • Sensitivity to the uniqueness of individuals and their preferences
    • Careful selection of language to convey program elements

  9. Targeted data collection focusing on
    • Increased access to palliative care
    • Improved quality of care
    • Resource utilization and cost
    • Patient/family/clinician satisfaction

  10. A communications strategy for succinctly presenting relevant data to stakeholders

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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 persons and their families. Visit PromotingExcellence.org for more resources.

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