Too many Americans die badly. Despite the best in medical science and technology, many patients with advanced, life-limiting illnesses suffer needlessly in the final stages of their lives— and die in ways that leave their families with legacies of pain.
A number of national research initiatives, including the Institute of Medicine’s report, Approaching Death: Improving Care at the End of Life, and the landmark SUPPORT project, have confirmed the serious, structural flaws in the way our health care system cares for those who are facing life’s end. The aging population and growing numbers of people living with chronic, incurable illnesses highlight the urgency of developing better ways for providing highquality care—while avoiding unnecessary and unwanted care—during the waning phases of life.
A social and professional movement is underway in response to identified shortcomings in the way we die. Initiatives spearheaded by The Robert Wood Johnson Foundation and other prominent health care philanthropies, and advanced by leading health care professional associations, have confronted specific inadequacies in training and practice.
Change of the magnitude required is, however, rarely simple or quick. There are many challenges to achieving the goal of reliable, high-quality care for our loved ones, and eventually for ourselves, as we die. Longstanding deficiencies in clinical training, clinical protocols and health service delivery, along with a paucity of tools and methodologies applicable to palliative end-of-life care, are among the reasons cited for the system’s inertial resistance to improvement. Deeper still is our collective tendency, as a culture, to avoid thinking and talking about dying, death and grief.
Psychology aside, one of the biggest factors underlying the current crisis involves financing. Barriers within the payment structures and mechanisms with which we pay for care for seriously ill Americans stand in the way of applying our finite health resources efficiently and effectively to maximize quality, value and responsiveness to the needs of the ill individual and his or her family. Misaligned incentives in the twin currencies of reimbursement and provider time influence patterns of care, encouraging aggressive treatment as the path of least resistance. It is often easier for a busy doctor to hospitalize a patient or institute treatment than to have an always difficult and poignant discussion acknowledging the possibility that the patient is dying, and discussing alternatives such as home care and hospice.
Existing payment mechanisms drive health service utilization, especially acute care, but often in ways that are not consistent with established domains of quality in end-of-life care. Clearly, large-scale solutions will require health system reforms that better align financial incentives with high standards of care. Correspondingly, health systems need to redesign routine operations to make it easier for providers to do the right thing, consistent with clinical realities and patients’ values and preferences. Major changes in policy and health care funding need to be based on evidence and solid programmatic experience.
The Relationship Between Access, Quality and CostPromoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation based at The University of Montana, Missoula, has been a leading national initiative to improve the quality of care for dying Americans and their families. Through its grant funding for innovative demonstration projects, technical assistance and consultation, and the convening of national experts from diverse fields to advise on key themes of end-of-life care, Promoting Excellence has pushed innovation and experimentation in support of new and better models of clinical care and health service delivery.
In 1998, after winnowing through almost 700 proposals, Promoting Excellence in End-of-Life Care awarded three-year grants to more than 20 highly innovative demonstration projects targeting care in a variety of challenging settings and hard-to-reach patient populations. These demonstration projects rank among the most ambitious and innovative palliative and end-of-life care projects undertaken to date. Collectively, they shed light on practical and effective ways for improving quality and access to care for incurably ill patients and their families. No surprise, since the projects selected for funding were painstakingly chosen based on high expectations of what they could achieve in those areas.
What is surprising is the degree to which the projects have shown that introducing elements of palliative care “upstream” in the course of illness, concurrent with life-prolonging treatment, is associated with controlling costs. As a group, the experience of the Promoting Excellence in End-of-Life Care projects suggests that substantial improvements in access to palliative service and quality of care for patients with high burdens of illness may be achieved without increasing total health care costs.
As the Promoting Excellence projects strived to expand access and enhance quality, they were also improving their health systems’ efficiency and health resource use. They achieved those results by coordinating care and facilitating communication between patients, families and providers; by enhancing patients’ autonomy and sense of personal control; and by assisting patients with advanced care planning and treatment decision-making that reflected their personal values and preferences. Through improved communication and coordination of services, the projects prevented medical crises or responded quickly and effectively to urgent problems when they arose, thereby diminishing emergency room visits, hospitals stays and days of care in the intensive care unit.
In looking across these programs, discernable patterns have emerged from the preliminary results. To the extent that costs could be accounted for, the programmatic innovations have translated into enhanced efficiency, diminished use of resources and savings in overall health care expenditures. Most of the available data needs to be viewed as preliminary; final cost accounting of the projects will require a year or more to complete.
The Promoting Excellence national initiative focused on "model-building." Project evaluation therefore emphasized assessment of the feasibility and acceptability of these new clinical and health service delivery models. Methodological challenges in documenting and quantifying actual costs—and potential cost savings—from the experimental models of palliative care have proven more daunting. In many instances, methods of cost accounting have not kept pace with the innovations. Palliative care often does not get “credit” for the systemic efficiencies it generates because of the compartmentalization of health care in distinct “silos” corresponding to reimbursement streams and direct budget line items. The projects often lacked capability to track total costs of their care or to compare those costs with costs in the baseline system.
However, as the cases described in this report make clear, despite the difficulties of accounting, the sites have amply demonstrated clinical value and cost-controlling potential worthy of subjecting their approaches to larger-scale national demonstrations. Despite the difficulties of delivering care within current reimbursement structures, service codes and payment silos, the Promoting Excellence projects provide provocative evidence of their ability to streamline health service delivery to patients with the highest burden of illness, diminish utilization of more costly hospital and critical care settings, and relate health care interventions to patients’ actual needs and desires.
Concurrent Approaches to End-of-Life CareThe highlighted box below outlines a number of common elements of successful palliative care approaches found in many of the Promoting Excellence projects. One of the most important themes to emerge from the projects is the provision of concurrent care: palliative care focused on comfort and quality of life simultaneous with aggressive, life-extending or disease modifying treatment for patients with chronic, advanced and life-limiting illnesses. The projects not only demonstrated the feasibility of this approach and its acceptability to patients and clinicians; they also showed its potential for containing costs.
Hospice programs have been the primary drivers of improved end-of-life care in this country over the past 25 years, bringing national attention to the system’s deficiencies and the needs of patients with life-threatening conditions. Comprehensive hospice care at its best is the gold standard for end-of-life care in America and it also provided a benchmark for the Promoting Excellence projects. The Medicare Hospice Benefit has supported the growth and maturation of hospice care—which now reaches about 700,000 patients and families every year. However, during the past three decades, medical treatment and patients’ and their families’ needs have changed.
In 1982, when Congress enacted the Medicare Hospice Benefit, political considerations demanded budget neutrality. Statutory provisions were added, first to require eligible recipients to give up life-prolonging care in order to qualify for the support of hospice and second, to base eligibility on a prognosis of six months or less to live. The arbitrary six-month requirement has been shown to have no clinical basis. The either-or dilemma confronting patients has come to be known as “the terrible choice” and is regarded as the predominant barrier to hospice access currently. Because of advances in medical science, there is no longer—if there ever was—a clear distinction between living and dying. Correspondingly, distinctions between life-extending and palliative treatments have also been blurred.
As you will read in this report, new modes of delivering palliative services, in amounts and intensities that respond to patients’ and families’ actual, evolving needs, have emerged. They are innovative, designed to fit within existing systems and settings of care. They are less restrained by restrictions imposed by the Medicare Hospice Benefit, but many of them represent uncompensated care due to barriers in existing reimbursement structures and thus may not currently be financially supported in a sustainable manner.
The following program descriptions offer snapshots of a half dozen new models for delivering palliative care. They are typical of the other Promoting Excellence projects in terms of their creativity, persistence and flexibility in responding to changes in their local environments. Each operates in a different setting for a distinct patient population, and each offers a unique set of experiences and insights. As a whole, they offer great promise in revealing viable, real-world models for aligning improvements in access, quality and cost-containment. Their experience provides health policy-makers with important lessons. Together, they point toward effective strategies for addressing the current critical national challenges of caring for people who are nearing life’s end.
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