“Viewpoints” | How Health Reform Can Improve End-of-Life Care
Health care reform offers significant opportunities not only to improve the quality of end-of-life care, but to apply the principles of good end-of-life care to improving our health care system. Since an estimated 25 percent of Medicare dollars are spent in the last year of life — and much of this spending is not on symptom management, communication, or caregiving but on procedures and treatments unlikely to be beneficial — health care reform cannot be effective unless it specifically addresses issues around serious and terminal illness.
Unfortunately, quality end-of-life care is not a priority for the current health care system; it is not built into the way that services are provided or reimbursed. Indeed, our health care system offers many barriers to good end-of-life care. Physicians and hospitals are reimbursed highly for providing chemotherapy and procedures even when they are clearly unlikely to be effective and not supported by evidence. However, there are no penalties for failures to provide care — for failing to provide good communication or discuss end-of-life issues, for repeatedly admitting patients unnecessarily to the hospital, or for not referring patients to hospice care in an effective and timely manner.
To truly improve end-of-life care, health care reform must address a number of issues that currently impede the quality of care. These issues include improving research in end-of-life care, including comparative effectiveness research; reforming the hospice benefit and demonstration projects for more flexible hospice care; and increasing accountability of providers for quality through performance assessment, not just reimbursing them for the quantity of health care that they provide.
Improving funding and research in end-of-life care is an especially critical need. Health care reform can improve this process both by increasing the priority and improving mechanisms for funding end-of-life research and by including evaluation of models of care delivery relevant to end-of life care in comparative effectiveness research. A National Institutes of Health State-of-the-Science Conference on Improving End-of-Life Care and an accompanying systematic review of the end-of-life literature found that many end-of-life care interventions, even for basic needs such as the management of pain and shortness of breath, have not been evaluated in well-conducted research studies. End-of-life care research is particularly challenging in our decentralized health care system due to difficulties in recruiting patients and completing data collection — most studies are very small and conducted at a single site.
Adequately funding good basic and clinical research will require making research on these issues a priority at the National Institutes of Health (such as setting aside a percentage of funding). We also need a structure for ensuring high-quality review and management of research proposals, as well as a structure for promoting cooperative research between institutions. Large national studies focusing on end-of-life care, or the inclusion of end-of-life issues in large studies on relevant topics, would greatly help to advance the field. One example, the National Mortality Followback Survey, has not been conducted since 1993.
Health reform must also address the inflexibility of the Medicare hospice benefit. Hospice is provided only as a comprehensive benefit under Medicare that is limited to patients with a prognosis of six months or less and often requires that patients forgo expensive treatments such as chemotherapy. Although the benefit has not changed substantially since its creation more than 25 years ago, the health of the population whom it covers has changed dramatically. This population now often has multiple chronic illnesses, and patients may live for many years with life-limiting conditions and despite significant medical needs.
The rigid nature of the Medicare hospice benefit has a number of negative effects. Many patients simply do not take advantage of it, and many who currently receive hospice care are not those who would benefit the most. The nature of the benefit has also meant that hospice is not integrated into the health care system, so its valuable symptom management and support are often not available until the very end of life. The current benefit also does not work well for the patient with serious chronic illness and significant needs who may prefer a comfort care, home-based approach but may live for many years in relatively stable condition until an acute illness intervenes. Demonstration projects to provide flexible and expanded care models to such patients are essential. These demonstration projects must include a strong evaluation component to demonstrate what works and what does not and how to continue to improve care delivery models.
Although initial Institute of Medicine priorities for comparative effectiveness research listed a number of health care delivery models for evaluation, initial requests for proposals have focused on traditional clinical questions on treatment of acute and chronic conditions. Comparative effectiveness research must include funding innovative models for good end-of-life care, such as comprehensive home-based palliative and geriatric care. Good end-of-life care for these patients is not part of our current health care system and will need models that include the comprehensive, coordinated approach of hospice but can be more flexible to include different kinds of care and providers and apply across health care settings.
Finally health care reform proposals must move us toward a system that focuses on the quality, not just the quantity, of care provided. Performance assessment has been a recent focus at the Centers for Medicare & Medicaid Services (CMS), including end-of-life care issues both for physicians and in hospice. A number of recent projects have shown that elements of end-of-life quality of care can be reliably and feasibly measured, and further work by researchers, CMS, and the National Quality Forum is continuing. Much more research is needed into how best to measure quality to improve patient care while minimizing potential harm and burden. For example, while good and timely care planning by skilled providers can improve patient outcomes and the likelihood of receiving care consistent with preferences, will a quality measure on the rate of completion of advance directives achieve this? Is the key piece of the intervention the completion of the documents or the meaningful conversations that providers have with patients and families? How can we measure this in a way that addresses the quality of the conversations and whether it occurs at an appropriate time in the patient’s illness?
Quality must also be integrated into the culture, documentation, and process of the health care system, and redesigned systems that can provide the continuity and communication needed will be essential. In a recent symposium on improving quality measurement for end-of-life cancer care, participants emphasized the need to start widely measuring quality now using instruments that we know work. However, standard, high-quality symptom assessment; documentation of communication; and delivery systems that cross settings (such as hospitals and physician offices) will be essential to significant advances in the quality of care.
Good end-of-life care cannot be marginalized. Many of the principles in good end-of-life care are needed throughout the health care system, and many patient needs, such as pain management and communication, are critical throughout the continuum of care of a serious illness such as cancer. Patients and providers must be able to expect that the principles of good end-of-life care will be provided to all patients throughout the course of a serious illness. Not treating pain, not addressing symptoms, poor communication skills, and not providing information and counseling to patients must be unacceptable.
Both health care reform and good end-of-life care require moving toward a health care system that is available to all; is integrated; and has value and quality, rather than quantity, of care as central tenets. The current health care reform legislation is at least a start toward developing a health care delivery system that works and will provide the care that patients with life-limiting illnesses need, but it’s just that: a start.
There is still much left to be done.
“Viewpoints” blog postings are intended to allow non-Altarum Institute authors to pose their own opinions and policy positions in the realm of health care and health policy. As a leading nonprofit health care research and consulting institute dedicated to improving human health, Altarum encourages open discussion and debate about the many challenges in health care today. All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions, or policy positions. Read more.
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