Palliative and End-of-Life Care Issues: Policy Perspective
Jeri L. Miller
A FRAMEWORK FOR SCIENCE POLICY IN PALLIATIVE AND END-OF-LIFE CARE
Better care is possible now, but we also need better data and scientific knowledge to guide efforts to deliver more effective care, educate professionals to provide such care, and design supportive public policies. (Field & Behrman, 2002, p. 3)
Since the publication of Shaping Health Policy Through Nursing Research (Grady & Hinshaw, 2011), a significant number of evidence-informed health policies have been implemented that affect the care of individuals approaching the end of life. Nursing science has played a critical role in shaping the evidence base of many of these new efforts through the establishment of a compelling and informative research literature. The impact made on health care policy by the field of end-of-life and palliative care science is evident in many renewed discussions of what it means to experience a serious, advanced illness in today’s health care environment. End-of-life and palliative care science has also strengthened the public consciousness of the important role of nursing science to substantiate the evidence within many health care initiatives that place value on high-quality, effective, and meaningful care. End-of-life and palliative care science, both in the past and in the present, has elevated and strengthened national recognition that the care of those at the end of life is a significant issue and a public health care priority (Morhaim & Pollack, 2013). New, informative, and persuasive data from a growing body of studies have demonstrated the significance of research in shaping policy efforts and influencing thought leaders, and many new research findings from the nursing science community have stimulated national media attention on the need for and continued support of end-of-life care. Evidence-informed conversations about end-of-life care are now being underscored by scientific data that serve as the underpinning for polices designed around the central premise of an individual’s preferences, goals, and values for end-of-life care.
Research evidence remains a mainstay of many of issues found in today’s public discourse surrounding end-of-life care and subsequent efforts in new health care policy development. Data-driven information continues to inform difficult policy discussions on issues such as pain management and opioid misuse, use or lack of use of advance directives, and withdrawal from life-sustaining treatments. New research findings continue to draw attention to the identification and treatment of advanced symptoms and the need for quality standards of clinical practice. A growing research literature has substantiated new legislative and regulatory policies that affect the provision of hospice and palliative care (Lorenz, Shugarman, & Lynn, 2006, p. 731). In addition, data from numerous studies have reinforced palliative care as a mainstay of health care with demonstrated value in improving health outcomes and health care utilization (Kamal et al., 2015).
Because of nursing science, the evidence base has significantly contributed to an increasing national awareness of end of life as a public health issue in terms of suffering and illness burden. For nurse scientists, health policy issues in end-of-life and palliative care extend into numerous areas that are well known in the community, from equitable access to comprehensive quality care, practice metrics and outcomes, reimbursement, and workforce needs, among others (Dubois & Reed, 2014; Paice et al., 2006). Nurse scientists identify and develop the new evidence-based improvements to end-of-life care, which are adopted into clinical practice through policy change across the entire health care system (Institute of Medicine [IOM], 2011, p. 222). In the complex and ever-changing area of palliative and end-of-life care, today’s scientists must be policy-savvy and ever cognizant of the many health, social, and political implications of translating and implementing new evidence in a manner that is shared effectively with health policy communities (AcademyHealth, 2015a).
Recognizing the importance of end-of-life and palliative care science in health policy requires an awareness of the complexity of the policy world and an understanding of assumptions underlying divergent processes of policy framing, agenda building, and consensus building (Prewitt, Schwandt, & Straf, 2012, p. 6). This chapter provides an overview of the interaction between science and policy in end-of-life and palliative care and the fundamental components of how this science has evolved to shape and inform a number of new and emerging health care initiatives. The chapter begins with an historical overview of the early contributions of the scientific community toward creating an infrastructure for research that provided a rich evidence base to generate data that has influenced health policy programs. Portraits of nursing science that have informed both policy and practice are highlighted along with resources that can strengthen the scientist’s understanding of health policy in end-of-life and palliative care. The chapter focuses on how nursing science has played a key role in informing end-of-life health care, and concludes with a discussion of strategic areas that future researchers may consider in ensuring that their work remains relevant to policy makers and public stakeholders.
BUILDING THE SCIENCE: AN INFRASTRUCTURE FOR POLICY CHANGE
Science contributes to knowledge, which serves as a critical component in shaping policy making and influencing emerging political decisions (van den Hove, 2007). The IOM 1997 report, Approaching Death: Improving Care at the End of Life, called for the collective efforts of policy makers, consumer groups, and health systems to work with researchers to increase knowledge and improve the quality of the experiences of individuals at the end of life. This landmark report was incentivized by a series of public and private initiatives to improve the care of dying patients and to respond to a growing awareness of deficiencies in end-of-life care that was emerging from a new body of compelling scientific data (Field & Cassel, 1997, p. 32). The 1995 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT; The Writing Group for the SUPPORT Investigators, 1995) served as a trigger point in singularly escalating the national discourse and raising the political awareness of the numerous shortfalls in the care provided to those at the end of life. Amid the subsequent public and political outcry to address the gaps in and dissatisfaction with the experiences of end-of-life care identified by the study, SUPPORT also served as an affirmation of the significant contribution that scientific research provides to inform and to guide quality health care services throughout the entire spectrum of living with and dying from an advanced illness (NINR, 2013).
The 1997 IOM report, the SUPPORT study, and subsequent IOM initiatives (e.g., Field & Behrman, 2002) helped to amass the existing data into informative messages that shaped national reconsideration of health policies in end-of-life care. The 1997 IOM report’s inclusion of research data substantiated the enormity of the issues that needed to be understood. The data also served as talking points in a collaborative “call to action” by national leaders, policy makers, and the broader scientific establishment to develop new and evidence-informed care for those at the end of life. As a result, numerous research funding opportunities were created by both the public and the private sectors to build a stronger research base in end-of-life science (NINR, 2013). In 1997, the National Institute of Nursing Research (NINR, 2015) at the National Institutes of Health (NIH) held the first federally cosponsored workshop on symptoms of terminal illness, in an effort to bring together leading experts in the field to evaluate the breadth of current research and to define the scope of future scientific inquiry. The workshop laid the foundation for a standing program in end-of-life science at NIH and NINR’s designation by the director of the NIH to serve as the lead institute on research in end-of-life care. NINR followed with a program announcement soliciting research on the Management of Symptoms at the End of Life and in 1999, a second request for applications targeted continued development of evidence in end-of-life care. These NINR efforts were the basis for subsequent directed funding by NIH and other federal agencies to define the scientific focus for end-of-life care and to identify areas for future research investment and health care policy development. NINR, along with the Office of Medical Applications of Research (OMAR), sponsored the NIH State-of-the-Science Conference, Improving End-of-Life Care (Grady, 2005), which resulted in consensus of priorities for building research networks, funding research training and career development, and collaboration across interinstitute, interagency, and public–private programs (Grady, 2005; Lorenz et al., 2006).
Other U.S. Department of Health and Human Services (HHS) agencies responded to the State-of-the-Science recommendations with a number of initiatives focused on increasing research translation and informing the public. The Agency for Healthcare Research and Quality (AHRQ) developed several evidence-based reports, including a critical analysis of the existing literature’s impact on quality improvement strategies for transforming health care quality (Dy et al., 2012). The National Center for Health Statistics (NCHS) actively engaged in the development of critical data briefs (Bercovitz, Sengupta, Jones, & Harris-Kojetin, 2011) and the HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE) produced a Report to Congress on Advance Directives and Advance Care Planning that emphasized a national need for continued attention to these issues (U.S. Department of HHS, 2008).
The accumulating data became part of federal policy language. For example, research data were important in shaping several bipartisan efforts in the U.S. Congress pertaining to legislation to promote research, professional training, and public awareness around palliative and end-of-life care (e.g., the Personalize Your Care Act of 2013, H.R. 1173; the Care Planning Act of 2015, S. 1549). Bills included language on advance care planning (e.g., the Physician Orders for Life-Sustaining Treatment [POLST]) whose relevance to health care was based on research evidence (Hickman, Keevern, & Hammes, 2015). Support for provider–patient advance care planning discussions, through tools such as the POLST paradigm, became part of proposed legislation to reduce health care costs through Medicare reimbursement under the Patient Protection and Affordable Care Act (ACA, 2010) which, when first introduced, resulted in significant public and political debate over the influence of so-called “death panels” on decisions to avoid medical care. Though first defeated as part of the introduction of the ACA legislation, the issue was revisited and in 2015, the Centers for Medicare and Medicaid Services (CMS) released final payment rules for advance care planning reimbursement—an effort that rose out of a wide range of stakeholder support, professional input, research evidence, and bipartisan congressional recommendations (CMS, 2015).
Other new legislative efforts were shaped by a growing awareness of new data focused on individual and family caregiver education and support, professional training, workforce development, payment reform, and the need to increase palliative and end-of-life care research. The Advance Planning and Compassionate Care Act (S. 1150, H.R. 2911) and the Critical Care Assessment and Improvement Act (H.R. 2651) called for an NIH central coordinating entity for end-of-life and palliative care research—an initiative that NINR had independently and proactively pursued in 2013 through the establishment of the NINR Office of End-of-Life and Palliative Care Research (OEPCR), whose mandate includes the support of research to inform health policy. The importance of research in shaping health policy reached full circle in the 2014 IOM report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, which noted the progress of the research community to build a substantial body of evidence to support broad improvements to end-of-life care. At a subsequent NINR-hosted briefing of the IOM Committee at the NIH in 2015, members of the IOM Report Committee reemphasized the continued need for such research development and for science to further advance evidence-based models of seamless, high-quality, integrated, and culturally appropriate palliative and end-of-life care.
These examples provide a broad overview of the important influence that the palliative and end-of-life research institution has played in building an infrastructure that continues to generate science that informs health policy. Since the early SUPPORT trial, the efforts of the research community have resulted in numerous publications and initiatives that have exemplified the important underpinning of “best” evidence to ensure that quality care is a priority for advanced illness. The significance of end-of-life and palliative care science—from building strong integrative research programs that provide the evidentiary impetus for change to the dissemination of results into meaningful health care policies and practices—remains unparalleled in its capacity to demonstrate the necessity for high-quality end-of-life care. Today, there is a new and evolving landscape associated with recent health care reform (Kamal et al., 2015). Palliative care has grown rapidly in the United States (Meier, Casarett, von Gunten, Smith, & Porter Storey, 2010) and is now recognized as a subspecialty certification in both nursing (Hospice and Palliative Credentialing Center, 2016) and medicine (American Board of Medical Specialties, 2016). Leaders in the field have created the National Consensus Project for Quality Palliative Care (2013) as a process to define quality care, and the National Quality Forum (NQF, 2006) has been created to generate preferred practice frameworks for providers. End of life is now a consistent contemporary issue in the popular press, such as Being Mortal: Medicine and What Matters in the End (Gawande, 2014), and the social media continue to inundate the public with informative and compelling information from numerous studies that draw attention to end-of-life care.
In summarizing both the past and the present progress on building science not only to improve the care of those approaching death, but also to create an impetus for change, it is clear that research remains a key proponent in shaping health care policy, and that nursing science continues to play a critical role in advancing this agenda. Going forward, it is an important time for science in end-of-life and palliative care and a “new era” for research as a critical component in shaping future policy. An important task for forthcoming health policy will be to continue to substantiate needs and solutions through an evolving and pragmatic evidence base (Taylor, Bhavsar, Harker, & Kassner, 2015) and to reframe scientific thinking to encompass a cognizance of how decision makers look to research results to improve the processes of policy making (Prewitt et al., 2012). The next section describes how science, and in particular nursing science, can be shaped to influence health policy decisions and how researchers should conceptualize their science to support tangible changes in palliative and end of-life care.
BRIDGING THE GAP
For those in end-of-life and palliative care science, the nature of the topic area and its highly political and public profile require adeptness at bridging the gap between scientific information and policy implementation. The processes that connect this gap, however, may not be linear. Science can both influence and be influenced by politics and policy and in many ways have different purposes:
Scientific knowledge often raises more questions than it answers. Policy formation, on the other hand, is inherently inductive and aimed at concrete solutions. This difference in purposes often leaves policymakers frustrated with the inability of science to provide clear answers to political questions. (Neal, Smith, & McCormick, 2008, p. 13)
Thus, bridging the gap between science and policy is a responsibility of the research community that produces the data and those who use it (AcademyHealth, 2015a).
Historically, health policy in end-of-life care emerged from a number of sources, including research, clinical practice, the community, and changing political influences and high-profile issues. Today, ever-changing political contexts require scientists to continuously consider how research may be formulated to play a role in health policy discussions and how research may be interpreted and used by various political or social entities (World Health Organization, 2007). At the onset of research formulation, investigators must consider how their science may contribute to policy processes such as problem identification, formulation of new strategies or new options for health care, the creation of new standards for care, or opportunities for program evaluation (Norse & Tschirley, 2000). A number of policy reviews specific to palliative and end-of-life care highlight how scientific data can be formulated to play an important role in bridging policy concerns such as advance care planning, metrics, outcomes, payment reform, workforce, and training issues (e.g., Morhaim & Pollack, 2013; Reb, 2003; Tilden & Thompson, 2009; Wiener & Tilly, 2003). Professional organizations such as the American Nurses Association (2016), the Hospice and Palliative Nursing Association (2016), and the Oncology Nursing Society (2014), among others, provide position statements, policy briefs, and advocacy resources on a number of advanced care concerns. These associations feature profiles of political candidates or pending legislation that can inform nurse scientists about the viewpoints of those within policy circles and activities in policy development or implementation. Other resources that help connect science to policy include the Center to Advance Palliative Care (CAPC), leading health policy journals (e.g., Health Affairs) or popular blogs (e.g., GeriPal or PalliMed), all of which routinely discuss palliative care matters that help one form perspectives on how policy pundits view evidence gaps or social issues. In addition, attendance at national conferences often features regulatory or advocacy updates on palliative or hospice care—and the proceedings and the press releases from these events often are informational resources for policy makers (e.g., the National Hospice & Palliative Care Organization Public Policy Committee Legislative Agendas for Congress). Emerging nurse scientists can also obtain policy training through various academic programs or private foundations (e.g., the Robert Wood Johnson Foundation). These, and other opportunities, allow scientific engagement by the research community on health care issues that are impacting palliative and hospice care (IOM, 2011), and help to create an awareness in the research community of processes to consider in designing research that has the potential to shape future health policy. These include issue framing, agenda setting, and context messaging which are described in the following sections.
The eventual fate of a policy proposal is also a function of how it is formulated in the first place—how it defines the problems to be attacked and what it offers in the way of policy solutions. (Porter, 1995, p. 15)