Demonstration projects funded by Promoting Excellence in End-of-Life Care strived to expand access to palliative services and improve comfort and quality of life for people with the highest burden of chronic, incurable diseases. Collectively, they focused on those in hard-to-serve and previously underserved populations— whether or not they were pursuing curative or disease-modifying treatment. As the projects described here illustrate, they succeeded in those primary objectives. They proved to be feasible and heartily accepted by clinicians, health system managers, payers, and, most importantly, patients and families.
At the same time that patient and family satisfaction with care received and provider satisfaction with care delivered both increased, there was yet another important and hopeful trend. Improved access to services and quality of care seem to be well-aligned with system efficiency and cost containment. Particularly striking is the impact on decreased hospitalizations during the last year of life, resulting from enhanced coordination, advanced care planning and crisis prevention—along with increased hospice referrals and enhanced opportunities to be cared for and to die at home.
While these programs have achieved impressive outcomes in a wide variety of settings, sustaining them has proven difficult in the current health care environment. That is especially true for programs operating in a fee-for-service setting where incentives tend to encourage utilization over continuity and efficiency. Those in safety net settings or other contexts with global budgeting more readily recognize that incentives for improving access and quality are in line with preventing hospitalizations and better managing limited resources. Programs in systems such as the VA medical center had an easier time making the case to their parent organizations that palliative care returns dividends to the system far beyond the required investment because they can more clearly see the results in reduced hospital expenditures.
These results hold important lessons and potential implications for health policymakers. Foremost is the need for large demonstration projects of concurrent palliative and life-prolonging care that incorporate coordinated services to improve comfort and quality of life for patients with advanced illnesses and their families. Further research is needed to examine potentials for improved system operations, decreased service utilization, prevention of caregivers’ burden and secondary health costs, and, most tantalizingly, positive impact on survival.
Preliminary results from the projects profiled in this report suggest that the savings, particularly in unplanned hospitalizations, will exceed the invested costs of care coordination, symptom control, crisis management and other elements of palliative care. That is what now needs to be tested. Leading clinician researchers among the Promoting Excellence projects agree on the need for larger-scale research. They call for population-based or multi-site studies of patients with multiple life-limiting diagnoses, accompanied by rigorous evaluation of quality and costs.
This is only the beginning—but it is a solid beginning. While the findings are preliminary, they are positive and hopeful. Well-designed, large-scale studies may enable our national health care system to remove the artificial distinctions between living with serious illness and dying and, in the process, to remove unnecessary impediments to improving comfort, ensuring family support and enhancing the quality of life’s end for all Americans.
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