The National Task Force for End-of-Life Care in Managed Care: Meeting the Challenge

Executive Summary

The nation is mobilizing. In 1997, the Institute of Medicine called for national action to improve the care of patients near the end of life and to provide more adequate support to their families. Special task forces have been created in many states. Numerous professional medical and nursing societies, including the American Academy of Hospice and Palliative Medicine, the American Association of Colleges of Nursing, the American Board of Internal Medicine, the American College of Physicians, the American Geriatric Society, the American Medical Association, the American Nursing Association, the American Pain Society, the American Society of Clinical Oncology and the Oncology Nursing Society, began efforts to improve the skills of health care professionals and revise the ways in which care is delivered to patients in the final phase of life. At the same time, the U.S. Supreme Court declined to recognize a constitutional right to physician-assisted suicide, but simultaneously laid down a gauntlet before the American health care establishment, challenging it to provide better care to the terminally and chronically ill.

The reason for this concern is two-fold. First, numerous research studies have documented major inadequacies in the care that patients and families receive:

Too many patients die in physical pain and discomfort, despite the fact that we have the technical know-how to control most symptoms near the end of life.
Technologies are imposed upon patients that merely prolong the dying process, while simpler acts of care and support are not provided.
Continuity of care is lacking.
Depression, emotional suffering and grief go unnoticed.
Patients' and families' wishes are commonly ignored.
Burdens on family caregivers are having profound effects on emotional well-being, health, and workplace productivity.
The financial impact on families caring for a loved one in the last years of life is often devastating.

Secondly, health care consumers are concerned. They are organizing themselves into advocacy organizations and creating public forums for discussion of the issues. These consumers are worried about how they and their loved ones will be cared for in a system that has focused nearly exclusively on the provision of life-prolonging technologies and very little on the physical comfort, psychosocial, spiritual, and everyday care needs of patients in the final phase of life and their families.

Clearly, problems with end-of-life care are endemic throughout the American health care system and will be difficult to fix. These problems have been particularly intractable in fee-for-service health care, where reimbursement patterns have privileged high technology care over primary care and home care services. The fee-for-service system has also resulted in highly fragmented care, with many patients and families finding little continuity between care settings and sometimes virtual abandonment by their health care professionals in the final days and weeks of life.

In the face of these problems, the Robert Wood Johnson Foundation awarded a grant to Education Development Center, Inc. to form the National Task Force on End-of-Life Care in Managed Care, whose recommendations are presented in this report.

The task force's vision is simple and straightforward: All persons should be confident of receiving humane and effective end-of-life care.

However, making this vision a reality is not so simple. All sectors of American society will have to work on behalf of better end-of-life care, including fee-for-service medicine, academic health centers, and medical and nursing educators. Consumer groups and perhaps most especially churches, synagogues, and community-based organizations will also have to get involved. Purchasers of health care insurance, particularly employers, also have a key leveraging role in promoting this vision. As a society, we must actively discuss our cultural attitudes toward frailty and death. Moreover, we need a frank and public dialogue on the best ways to fulfill our community obligations to people at the end of life and to their families.

Although many of us must become involved in numerous ways on multiple fronts, managed care forms of health care delivery present special opportunities for reform that hold great promise for realizing the vision of humane and effective end-of-life care. Managed care represents a new and important opportunity to improve end-of-life care in the United States because it has special tools and strategies that can be brought to bear on the problem, including the ability to:

institute systems of accountability
conduct population-based health studies
disseminate clinical guidelines
educate clinicians and patients
motivate improvements in clinical practice through performance measurement
monitor outlier practices
provide incentives to reduce inappropriate variations in practice patterns
develop interdisciplinary, team approaches to patient and family care
provide comprehensive, continuous care across the lifespan, from birth through death.

These opportunities have not existed on so large a scale before. They hold great promise for making a significant impact on the quality of end-of-life care in the United States. And, if the opportunities are used wisely, they could lead to innovations in care delivery that could serve as exemplars of optimal practice in fee-for-service settings as well as managed care environments.

Moreover, it is in managed care's interest to tackle this national problem. When care is fragmented or inappropriate, patients and families suffer. Their satisfaction with their health care organization and their plan loyalty are likely to diminish. Furthermore, managed care organizations have, historically, served relatively young, healthy populations. Yet, by 2015, a full 14.7 percent of Americans will be 65 years of age or older, and by the year 2030, one in five Americans will be in this age bracket. The aging of America will bring far greater numbers of people with chronic, degenerative diseases than ever before into managed care organizations and there will be a need to develop responses to this demographic shift.

If managed care organizations take up this challenge, there is much they can offer. Managed care's typical emphasis on preventive care and early detection, when applied to seniors, can lead to earlier, aggressive interventions in chronic conditions, thereby improving symptom control and reducing disabilities near the end of life. This emphasis on prevention, coupled with managed careÕs ability to enhance continuity of care and create systems of accountability, could be a powerful asset for enhancing the quality of life of its oldest and sickest members.

Recognizing the opportunities that managed care can provide for alleviating problems with end-of-life care in the United States, the National Task Force on End-of-Life Care in Managed Care is proposing 12 recommendations for managed care leaders, health care policy makers, and purchasers of managed care services. These recommendations address three needs that are inextricably linked:

access to comprehensive, high-quality care near the end of life
accountability to determine whether such care is being delivered
payment methods to ensure that financial incentives are aligned with the provision of humane and effective care

It is the task force's view that all three of these conditions must be met and that it is possible to build systems of care that take all these dimensions into account.

The task force recommendations are summarized in Figure One on the next page and appear again with more supporting detail in Chapter Two of this report. Chapter One reviews current problems in end-of-life care and explains why managed care is a promising setting in which to address these challenges in concert with other crucial stakeholders such as policy makers, purchasers, nursing and medical school educators, and community leaders. Chapter Three proposes action steps that managed care leaders, policy makers and purchasers of managed health care can take to ensure that these recommendations are adopted and implemented. The appendices include annotated references for key documents, ongoing initiatives, recommended competencies for clinicians in training reprinted with permission from the American Association of Colleges of Nursing and the Institute of Medicine, as well as biosketches of task force members.

Figure One

Summary of Task Force Recommendations

Improve Access

Provide managed care insurance products that cover humane and effective end-of-life care for patients and families.
Create specific programs for patients dying of chronic, degenerative conditions and their family caregivers.
Base access to hospice care on severity of need, not estimated life expectancy.
Ensure continuity of care for patients and families across different providers and care settings.

Strengthen Accountability

Focus continuous quality improvement efforts on end-of-life care.
Develop valid, standardized measures to assess the quality of end-of-life care.
Report on quality of care to Medicare, Medicaid, commercial purchasers, and consumers.
Improve the clinical competence of physicians, nurses, and other health care professionals providing care to patients near the end of life.
Reach out to patients and families as partners in end-of-life care.

Develop and Evaluate Payment Methods

Test new methods for aligning financial incentives with the provision of humane and effective care.
Ensure access by developing risk-adjustment strategies or other payment methods that properly compensate managed care providers and plans for the costs of caring for patients near the end of life.
Develop and study the effects of alternative reimbursement methods capable of enhancing coordination between managed care organizations and hospice programs.