The elimination of suffering and the cure of disease are the fundamental goals of medicine.1 Although medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families.2 Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. Yet, multiple studies over the past decade suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems.3
Palliative care is interdisciplinary medical care focused on relief of pain and other symptoms and support for best possible quality of life for patients with serious illness, and their families. It is appropriate at the point of diagnosis of a serious illness.4 It goes beyond hospice care to offer patients and their families treatments focused on improving quality of life while they are receiving life-prolonging and curative treatments.3 Palliative care programs have been shown to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services.5–7 In the last 5 years alone the number of palliative care programs has more than doubled.8 This growth is in response to the increasing numbers and needs of Americans living with serious, complex, and chronic illnesses, and the realities of the care responsibilities faced by their families.
To ensure that all persons with serious illness and their families receive the quality of care they deserve, palliative care must become an integral part of the US healthcare landscape. Specifically, persons facing serious illness and their families must know to request palliative care, medical professionals must have the knowledge and skills to provide palliative care, and hospitals and other healthcare institutions must be equipped to deliver and support palliative care services. The Center to Advance Palliative Care (CAPC) (www.capc.org) and the National Palliative Care Research Center (NPCRC) (www.npcrc.org) work together to establish this 3-part mission by:
- Developing research to serve as the knowledge base for quality clinical care and the foundation on which to build palliative care programs and systems;
- Disseminating this knowledge to patients, families, professionals, and institutions throughout the United States and ensure that it is integrated within mainstream healthcare; and
- Influencing and collaborating with policy makers, regulatory bodies, and federal funding agencies (eg, the National Institutes of Health) to ensure that the healthcare infrastructure supports the continued growth and development of palliative care.
In this paper, we detail the development of these 2 centers and discuss the impact of their work on the development of palliative care in the United States.
WHAT IS PALLIATIVE CARE AND WHY IS IT NECESSARY?
Improvements in public health, the discovery of antibiotics, and advances in modern medicine have resulted in unprecedented gains in human longevity. Eventually however, most adults will develop 1 or more chronic illnesses with which they will live for years before death,3 and tragically over 25,000 children per year in the United States are born with or develop a serious or life-threatening disease such as cancer, cystic fibrosis, cerebral palsy, or muscular dystrophy.9 For both adults and children, the years after diagnosis are characterized by physical and psychological symptom distress; progressive functional dependence and frailty; and high family support needs. These patients and families confront a US healthcare system organized around specialists who are focused on acute (and narrow) episodes of care and who feel pressure to see more patients in less time. This approach results in care characterized by inadequately treated physical distress; incomplete care plans; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems.3
In response to the unmet needs of patients with serious illness and their families, the specialty of palliative care has emerged. Palliative care, delivered by teams composed of doctors, nurses, social workers, and chaplains, focuses on relieving suffering and achieving the best possible quality of life for patients and their caregivers. It involves symptom assessment and treatment; aid with decision-making and establishing goals of care; practical support for patients and their caregivers; mobilization of community support and resources to assure a secure and safe living environment; and collaborative and seamless models of care (hospital, home, nursing homes, and hospice). It is offered simultaneously with life-prolonging therapies for persons living with serious or complex illness.4
The development of the specialty of palliative care has been a critical step in addressing the unmet needs of patients with serious illness and their families and the growth of this field has been remarkable. Nevertheless, sizeable challenges remain if care for seriously ill patients and their families is to improve in the United States. Most patients and families who could benefit from palliative care do not know of its existence or confuse palliative care with end-of-life care and thus cannot or do not request palliative care when they need it.10 Unlike other areas of healthcare, the knowledge base to support the core elements of palliative care clinical practice (ie, pain and symptom management, communication skills, spiritual support, care coordination) is inadequate and care models developed to support the needs of patients and families have yet to be evaluated.3 That is, the evidence base to assure high quality clinical care and guide appropriate institutional and system benchmarks is lacking. Finally, although progress has been made, the majority of hospital, nursing homes, and home care agencies still lack integrated and adequately supported palliative care programs.
WHAT IS THE MISSION OF CAPC AND NPCRC?
The mission of CAPC and the NPCRC is to ensure that all persons facing serious or advanced illness and their families receive high-quality palliative care throughout the course of their illness. The goals of the Centers are to ensure that:
- Patients and families know what palliative care is and demand it from the health system
- Medical professionals have the knowledge and skills to provide palliative care
- Hospitals and other healthcare institutions are equipped to deliver and support palliative care services.
The 2 Centers work in close collaboration. CAPC was established in 1999 as a National Program Office of the Robert Wood Johnson Foundation to provide operational and technical assistance to hospitals developing palliative care programs to improve the care of patients within the healthcare system. CAPC has developed an array of pragmatic technical assistance products that provide hospital leaders with the tools and support needed to establish sustainable palliative care programs (see www.capc.org). The NPCRC was established in 2006 by the Emily Davie and Joseph S. Kornfeld Foundation to help assure that palliative care teams and programs deliver quality care that is evidence-based and effective. The NPCRC is building a generation of expert researchers addressing the most pressing problems faced by seriously ill patients—their symptoms, the quality of their communication with their doctors, and the responsiveness of their healthcare systems. The NPCRC supports investigators to develop the pilot data and analytical tools necessary to compete successfully for major National Institutes of Health (NIH) grants whose results will provide the evidence base necessary to support and grow the field.
WHY WERE CAPC AND THE NPCRC DEVELOPED?
Effecting change in healthcare (eg, improving care for seriously ill patients and their families) requires that new knowledge be developed and that this new knowledge is then translated, disseminated, and incorporated into routine clinical practice. Yet, in our current healthcare system, researchers (those that develop knowledge), full-time clinicians (those that deliver care), and administrators and policy makers (those that oversee and regulate healthcare) form distinct and isolated communities that influence each other. It is perhaps not surprising that the typical lag between an initial research finding and its incorporation into routine clinical practice (eg, aspirin after myocardial infarction) is on the order of 10 years, given the passive manner by which new research is translated to the bedside.11 Efforts to “speed up” this process through continuous quality improvement programs, mandated dissemination plans in NIH grants, or promoting open exchange between researchers and clinicians at national meetings have been ineffectual, largely because these activities require individual clinicians and institutions to adopt, adapt, and operationalize findings and measures developed in research settings to the real world of clinical practice.11
Understanding the factors that promote effective social change—particularly the principles of social marketing that successful change requires outreach and communication that is relevant, meaningful, and important to the audience we are trying to reach—led to the formation of CAPC and the NPCRC. Whereas the 2 Centers share the same overall mission, work collaboratively to translate palliative care research into effective clinical practice, and together influence policy makers and regulators, they provide discrete national homes to 2 fundamentally different but absolutely essential palliative care communities—researchers and direct care providers.
The recognition that the target audiences for knowledge development (academic researchers) and research funding (NIH) are fundamentally different from the target audiences that provide direct clinical care (full-time clinicians) and develop and organize healthcare delivery (hospital administrators) has allowed each of the Centers to develop audience specific messages; carefully defined activities and scopes of work; and audience-specific technical assistance that have been instrumental to the rapid growth and development of the field of palliative care. Neither CAPC nor the NPCRC alone is sufficient to effect the change that is needed. Technical support for diffusion of innovation (CAPC) that is based on valid research evidence (NPCRC) is necessary to achieve our mission: that all patients and families in the United States have access to quality palliative care throughout the course of their illness.
HOW DO THE CENTERS WORK COLLABORATIVELY TO EFFECT CHANGE?
The work of the Centers is highly audience-specific and driven by the needs and interests of each group. In the case of CAPC, the primary audiences are hospital administrators, clinicians, and policy makers. In the case of the NPCRC, the audiences are researchers from a range of different disciplines as well as the major national funders for research such as the NIH. Our focus on mission alignment for these distinct audiences—academic researchers and direct care providers—has resulted in the development of a united community of dedicated palliative care professionals that, although strongly identified with the goals of the individual Centers—knowledge development and research for the NPCRC, clinical care and healthcare delivery for CAPC—are united in the commitment to the field of palliative care and to the overall mission of the Centers.
The Centers leverage each other’s work by:
- Promoting and conducting pragmatic clinical research (NPCRC)
- Translating these research findings into practical technical assistance for clinicians, hospitals, and health systems (CAPC, NPCRC)
- Disseminating this assistance throughout the United States (CAPC)
- Evaluating the effect of these efforts (NPCRC)
- Working with policy makers, regulators, and government agencies to promote the growth, development, and sustainability of palliative care throughout the United States (NPCRC, CAPC)
- Enhancing consumer knowledge and education (CAPC)
Figure 1 displays the collaborative relationship of the 2 Centers.
WHAT IS THE CORE STRATEGY OF CAPC AND THE NPCRC?
The core strategy of CAPC and NPCRC is depicted in Figure 2. Specifically, both Centers employ a bottom-up and top-down strategy. Bottom-up initiatives focus on helping researchers develop the evidence base of palliative care and on helping professionals in hospitals and other care settings to establish and sustain quality palliative care programs. Top-down initiatives support policy, accreditation, regulation payment, research, and educational change necessary to embed and formalize palliative care in the nation’s healthcare system.
WHAT ARE THE CORE ACTIVITIES OF CAPC AND THE NPCRC?
Research Development: NPCRC
The goal of the NPCRC is to improve care for patients with serious illness and their families by developing a solid evidence base in palliative care for guidance of healthcare professionals and healthcare delivery by hospitals and other healthcare institutions. To achieve this goal, the NPCRC currently undertakes the following activities:
- Career Development Awards for Junior Investigators: These awards promote the development of new leaders in palliative care research by supporting promising junior faculty through career development awards.
- Pilot and Exploratory Grants: These grants assist experienced investigators in competing successfully for federal research grants by funding pilot and exploratory studies that are a requirement for successful NIH applications.
- Palliative Care Research Community: The NPCRC is developing a vital community network of palliative care researchers through its website and by hosting an annual research symposium to convene researchers for presentation of cutting edge research, establishing research priorities, and promoting collaboration.
- Clearinghouse and Tracking: The NPCRC monitors NIH, Veterans Administration, and philanthropic funding of palliative care research and tracks palliative care research publications to benchmark and influence allocation and priority setting at the NIH and elsewhere.
- Research Support for Investigators: One of the major challenges of palliative care research is not only conceptualizing and posing important research questions, but also in designing the studies, developing the instruments, and employing analytic techniques that will accurately answer the questions being posed. Many institutions conducting research in palliative care lack faculty and colleagues with the expertise in these key areas of research infrastructure. In recognition of this fact, the Center employs consultant experts in instrument design, research design, and analytic techniques that are available to and shared by Center investigators across the country.
Knowledge Dissemination and Technical Assistance: CAPC
The goal of CAPC is to assist leaders in hospitals and other healthcare institutions across the United States to develop effective palliative care programs through technical assistance. This specific and practical assistance focuses on operational, financial, and marketing approaches to successful program formation. CAPC and its tools, seminars, outreach, and publications have been incredibly successful. Hospital palliative care programs in the United States have more than doubled in number to almost 1600 programs since the year 2000.12 Currently, according to the American Hospital Association, more than 60% of US hospitals report the presence of a palliative care program and over 80% of the nation’s mid-large size hospitals (over 300 beds) report the presence of a palliative care program.12
CAPC has learned that palliative care programs need different kinds of technical assistance, depending upon their stage of program development and the nature of their institutional home. In response, CAPC developed 4 major technical assistance products to address these varying needs and stages of change. These products have incorporated state-of-the-art research and focus on a strong business case, clear and practical operational technical assistance, and sophisticated social marketing techniques to promote palliative care to key audiences. CAPC’s activities include:
- National Seminars: CAPC conducts national training seminars that assist hospitals to establish new and strengthen existing palliative care programs to assure that palliative care programs are both high quality and sustainable. These national seminars also create a professional community and provide much-needed leadership training, and practical and moral support to palliative care professionals often working in relative isolation within their institutional settings.
- Palliative Care Leadership Centers: In 2004 CAPC developed, and now supports and administers the 9 Palliative Care Leadership Centers (PCLCs). The PCLCs are 9 diverse centers of hospital palliative care excellence around the nation that serve as site visit centers and mentors for newly forming hospital palliative care teams, and include several academic medical centers, faith-based hospitals, a cancer center, pediatric programs, and a community healthcare organization to reach the widest possible audience. The PCLCs have hosted over 452 institutions and 2425 professionals in the last 4 years and boast an unusually high (680%) success rate in establishment of a new palliative care program at the 2-year mark after the site visit.
- Professional Website (www.capc.org): CAPC has developed and maintains an interactive website (www.capc.org) that provides individuals and programs with operational technical assistance and tools (eg, marketing brochures, template business plans, and clinical assessment tools) so that no one needs to reinvent the wheel and so that the opportunity costs of establishing a new program are maximally reduced.
- The Guide: CAPC developed and distributes a comprehensive operational desktop book, the Guide to Establishing a Hospital-Based Palliative Care Program, containing a set of clear and straightforward steps to establishing a successful hospital palliative care program.
- Consumer Website (www.getpalliativecare.org): CAPC launched a consumer website (www.getpalliativecare.org) and is aggressively promoting palliative care through web, print, and broadcast media. Getpalliativecare.org explains that palliative care is not hospice care and provides information to patients and families about palliative care from the time of diagnosis, and throughout the course of a serious illness, not just at the end of life. Over the past year, there were 189,203 visits to the site.
- Audio Conferences: CAPC conducts a monthly audio-conference series led by national experts providing guidance on specific program development topics such as quality improvement methods, pediatric palliative care, and models for small and rural hospital settings. Each audio conference provides opportunity to interact with the speaker through a Q&A format. Since 2005, there have been over 29,150 audio-conference attendees.
Knowledge Translation and Evaluation of Impact: NPCRC and CAPC
CAPC and the NPCRC work collaboratively to translate cutting edge research into practical technical assistance and to evaluate the impact of CAPC’s programs.
- Practical Tool Development: CAPC and the NPCRC have developed a series of practical tools to conduct financial impact analyses, assess clinical outcomes, and measure quality using state-of-the-art evidence developed by NPCRC investigators and staff and then pilot tested by CAPC. These tools include downloadable files and instruments and interactive spreadsheets based upon programmatic data analyzed by the NPCRC and operationalized by CAPC. (See http://www.capc.org/tools-for-palliative-care-programs/).
- Tracking Growth of Hospital Palliative Care: CAPC and the NPCRC have documented the growth of palliative care programs in the United States and identified hospital factors that have been associated with the successful development of palliative care programs.8 For example, teaching hospitals, faith-based hospitals, and not-for-profit hospitals are more likely to report a palliative care program than other hospital types.
- Palliative Care and Hospital Costs: The NPCRC has rigorously evaluated the cost savings associated with hospital palliative care programs and CAPC used these data to develop interactive “cost savings” calculators and downloadable spreadsheets to assist new and established programs in their business planning13,14 (see http://www.capc.org/building-a-hospital-based-palliative-care-program/financing).
- Impact: The NPCRC has evaluated the impact of CAPC’s programs on the growth and development of hospital palliative care programs and used these data to continuously fine-tune CAPC’s product line and develop new programs and products.
- Public Awareness and Knowledge: CAPC and the NPCRC, in collaboration with the American Cancer Society and Public Opinion Strategies recently conducted a nationally representative mixed methods survey of Americans’ knowledge and attitudes about palliative care. The results will be used to develop a national public awareness campaign as to the benefits of and need for universal access to palliative care for persons with serious illness and their families.
Influence on Health Policy:NPCRCandCAPC
The Centers have worked actively with policy makers and regulators to promote palliative care throughout the United States. Examples of activities undertaken include:
- The National Consensus Project for Quality Palliative Care: The National Consensus Project for Quality Palliative Care (NCP) was organized by CAPC. The NCP was composed of a consortium of the 5 leading palliative care organizations in the United States and developed the first quality guidelines for palliative care programs. The NCP guidelines served as the basis for the newly developed National Quality Forum’s (NQF) Framework and Best Practices for Quality Palliative Care. The NQF is the nation’s leading entity for establishment of definitions and measures of healthcare quality. Each of these initiatives were initiated, heavily influenced, and supported by CAPC and are critically important for the growth of palliative care as they establish a framework for quality standards for regulators, payers, and program leader.
- The NQF: The NPCRC and CAPC have been active partners with the NQF in its mission to approve quality metrics for palliative care programs and to promote the development of palliative care as a national quality issue through its Priority Partners Initiative. In addition, the NPCRC recently coordinated the submission of palliative care measures from experts in the field for the NQF’s call for quality measures.
- The Joint Commission: CAPC has collaborated with the Joint Commission in the development of a certification program in palliative care for US hospitals. This voluntary program will ensure that participating hospital palliative care programs now meet rigorous and standardized quality guidelines and will further the development of high-quality hospital palliative care.
Care for persons with serious illness and their families needs improvement. Untreated physical symptoms, poor communication between providers and patients, and treatment decisions in conflict with patient and family preferences characterize the current standard of healthcare for our sickest and most vulnerable patients. Surveys of patients and their families have identified relief of suffering, practical support needs, open communication, and opportunities to relieve burdens on and strengthen relationships with family, as the top priority needs from the healthcare system. The field of palliative care was developed in direct response to the unmet needs and wishes of patients and their families and the accomplishments of this brand new interdisciplinary specialty over the past decade have been remarkable. The CAPC and the NPCRC are committed to ensuring that all persons facing serious illness and their families will know to request palliative care, healthcare professionals will have the knowledge and skills to provide palliative care, and hospitals and other healthcare institutions will be equipped to deliver and support quality palliative care services.
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