On June 7, 2008, over one hundred researchers, students, practitioners, and policymakers met in Washington, DC for the fifth annual Long-Term Care Colloquium. The colloquium is part of a project sponsored by The Commonwealth Fund and conducted by AcademyHealth that seeks to create a high-performing system of long-term care (LTC) by moving research into policy and practice. To achieve this end, the colloquium fosters conversation and collaboration on important questions among myriad long-term care stakeholders. To join our mailing list and learn more about ongoing activities of this initiative, please contact us at firstname.lastname@example.org.
Building on momentum generated by the first four colloquia, the 2008 colloquium addressed these critical issues:
Susan Reinhard, Ph.D., Rhonda Montgomery, Ph.D., and Mary Jo Gibson presented highlights from their background paper on informal caregiving. Tamara Konetzka, Ph.D. likewise presented key findings from her background paper—co-authored with Rachel Werner, M.D., Ph.D.—on disparities in long-term care. Following each presentation, experts representing providers, consumers, and state and federal policymakers placed the discussion in a real world context. Facilitated small groups then discussed questions raised by the papers and discussants' comments, bringing their conclusions back to the entire group in a plenary session. In addition, Edward Miller, Ph.D., presented preliminary findings from a survey of LTC opinion leaders, which was followed by an open plenary discussion.
Our hope is that the colloquium papers and discussions will stimulate collaboration among LTC stakeholders, timely research and the application of research to high priority areas of LTC financing and service delivery.
While their integral role in the delivery of long-term care often goes unrecognized, family members, friends, and neighbors perform a vast majority of the services required by chronically ill and disabled individuals. While most have no medical training, informal caregivers perform myriad medical tasks in addition to helping their loved ones with essential daily activities such as eating, bathing, and dressing, informal caregivers. Beyond these roles in the home, they are often responsible for coordinating care from a variety of formal medical providers, translating the information to their family members, and advocating for the best possible treatment.
Susan Reinhard, Ph.D., R.N., the director of the AARP Public Policy Institute, opened her presentation by briefly reviewing the immensely important role informal caregivers play in long-term care in the United States. She noted that, the economic value of informal caregiving in 2006 was estimated at $350 billion, almost as much as Medicare's entire budget. In addition, many studies have proven that the presence of informal caregivers can delay and even prevent the use of nursing homes and is closely associated with shorter hospital stays and fewer readmissions.
In order to preserve the supply of informal caregivers in the face of an increasingly insufficient supply of formal long-term care providers, Reinhard emphasized that policy must consider caregivers both as providers of care and as potential secondary patients. As such, informal caregivers must be provided with the tools to give quality care in situations that could “make nursing students tremble.” At the same time, formal long-term care providers need to support informal caregivers by treating them as integral members of the medical team.
Rhonda Montgomery, Ph.D., the Helen Bader Endowed Chair of Applied Gerontology in the Helen Bader School of Social Welfare at the University of Wisconsin, Milwaukee, built on Reinhard's introduction to the complexities of informal caregiving, addressing issues that arise for policymakers.
She believes that the American ideologies of “individualism” and “familism” subconsciously imposing heavy obligations on informal caregivers without affording them corresponding rights or tools to meet those obligations. She noted that current LTC funding mechanisms do not support informal caregiving, placing the financial responsibility on the shoulders of the patient's family.
Montgomery also identified the potential benefits of interventions designed to support informal caregivers, including stress reduction, skill building, cost reduction, and avoidance of premature nursing home placement. She went on to identify priority areas for researchers interested in building the evidence-base for policy changes, including:
Gail Hunt, CEO of the National Alliance for Caregiving, commented on the paper from her perspective as a researcher working in an organization that supports family caregivers and the professionals who help them. She identified additional areas where further research is necessary and suggested sources of funding for interventions to support caregivers, such as:
Hunt warned that, until further research identifies areas where interventions will be effective and cost-saving and informal caregivers identify themselves as members of a cohesive group, Congress will continue to avoid the issue, labeling it too complicated and expensive to change.
John Wren, Deputy Assistant Secretary for Policy and Management at the U.S. Administration on Aging, added to Gibson's comments about the implications of informal caregiving for public policy. He challenged policymakers to acknowledge the dominance of informal caregivers in the field of long-term care. Additionally, he argued that state and federal governments should shift their focus from creating specific service programs to supporting informal caregivers with integrated and flexible, consumer-directed service models. Reminding researchers of the importance of demonstrating the cost-effectiveness of supporting informal caregivers, he advocated shifting money from less-effective areas of long-term care financing into flexible support programs for informal caregivers.
Following the speakers' presentations, colloquium participants engaged in lively debate of policy issues, research questions, and potential funding solutions for reform in long-term care within their small groups. They then identified the most important points from their discussion and shared them with the large group.
The participants suggested setting policy priorities to target the structural and financial needs of informal caregivers. To inform such policies, they stressed the need for rigorous cost-effective analyses of specific interventions over time. They suggested looking into capitated models of funding, such as PACE, as potential funding alternatives to direct cash incentives for informal caregivers. Many participants discussed the need for informal caregivers to develop a strong political voice, and encouraged research on the effects of informal caregiver unions and other frameworks for organizing informal caregivers.
Tamara Konetzka, Ph.D., Assistant Professor in the Department of Health Studies at the University of Chicago, presented highlights from the paper she co-authored with Rachel Werner, M.D., Ph.D., synthesizing research on disparities in long-term care and identifying remaining research and policy issues.
The authors used the definition of disparities (as opposed to differences) developed by the Institute of Medicine (IOM) for its study of disparities in overall health care. The 2002 IOM report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, defined disparities as “racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriateness of intervention.” Konetzka and Werner use a modified version of that definition to frame their exploration of disparities in access, quality, and use of long-term care along racial, ethnic, and socioeconomic lines
In their review of the literature on disparities in LTC, the authors found dramatic evidence of disparities in the different groups' use of LTC as well as in the quality of the care they received. Nevertheless, they determined that disparities in quality of care were overwhelmingly the result of segregation—where people go for long-term care—rather than individual discrimination within particular nursing homes or agencies.
Noting that most efforts at quality improvement in long-term care have utilized market-based incentives, Konetzka and Werner hypothesized that increasing information and competition among long-term care providers might inadvertently increase disparities. For example, more educated or wealthy residents might have more access to and understanding of publicly available quality information. The authors also point to evidence that disparities in use of information technology on a whole may be increasing, which could be reflected in increased disparities in the use of quality information.
The researchers also found that market-based incentives might disproportionately help high-performing providers who already have the capital necessary to invest in quality improvements. Furthermore, market-based incentives for quality improvement could force low-quality providers out of the market, exacerbating existing access issues.
Likewise, the authors observe that consumer-directed care could increase disparities if low-income groups are less able to navigate the system to access high-quality providers, or if those groups are unable to take advantage of those services for reasons of cost.
Nevertheless, consumer-directed care could decrease disparities by increasing the choice among individuals of low socio-economic status. The greater choice within low-income communities could potentially induce an increase in supply of providers where there formerly were few options, as well as create jobs in those neighborhoods by paying informal caregivers.
Based on their review of the entire body of literature on disparities in long-term care, Konetzka and Werner identify research priorities to further understanding of disparities, their causes, and their solutions. They encourage researchers to focus their efforts on:
Laura Trejo, the General Manager for the Los Angeles Department of Aging, spoke from a local policy perspective on disparities in access, quality, and use of long-term care services. She noted that utilization of services depends on the availability, accessibility, and acceptability of care. Trejo urged researchers to consider the wide diversity of the aging population and to include ethnic diversity in their studies of long-term care.
Konetzka identified six potential policy modifications to consider in the discussion about how to eliminate disparities in long-term care. They included:
Ultimately, Konetzka reminded colloquium participants that improving overall quality and decreasing disparities do not have to be mutually exclusive campaigns. Both efforts will be more effective if policies are developed with both ends in mind.
In her comments on the paper, Laura Trejo challenged policymakers to design culturally-competent policies that take into account the cultural needs, as well as the financial and service needs, of a diverse aging population. She called for effective outreach to help the entire community take advantage of available resources for long-term care. To that end, she reminded the participants not to assume that immigrant populations are invariably literate in their native tongue. Rather than simply making use of printed materials or the internet, to really reduce disparities in long-term care, outreach must include face-to-face contact with the most vulnerable populations.
Clari Gilbert, the Executive Vice President of Beth Abraham Family of Health Services, spoke on the topic of long-term care disparities from her perspective as a provider. She emphasized that patients and their families come to nursing homes at an extremely vulnerable time of life. They often lack awareness about what kind of care they should be receiving, inhibiting their ability to demand appropriate and high-quality care.
Gilbert highlighted differences in payers within her own organization, Beth Abraham Family of Health Services. At their facilities in Brooklyn and the Bronx, where there were many more nonwhite residents than white residents, a vast majority of both white and nonwhite residents relied on Medicaid to fund their long-term care. In Queens and Westchester, nonwhite and white populations were much more balanced, still with a majority of residents benefiting from Medicaid. Nevertheless, the proportion of Medicaid to other payers in those areas was much less drastic than in Brooklyn and the Bronx. These statistics illustrate the tendency of residents in nursing homes to reflect the makeup of the communities where they are located, supporting Konetzka and Werner's observation that disparities in the quality and use of long-term care services is tied much more closely to segregation across nursing homes along racial, ethnic and socioeconomic lines, rather than specific discrimination within a given facility.
Gilbert also warned that a diminished workforce will remain a crucial issue for the future of long-term care and challenged educators to broach the topic of disparities in their classrooms.
The presentations inspired a spirited debate among colloquium participants about the merits of different approaches to reducing disparities in long-term care. When they reported on their discussion to the larger group, a number of the small groups observed that some measure of ethnic segregation might be valuable for creating culturally-competent long-term care environments. Even if the concentration of people from similar cultural backgrounds might be desirable, however, they emphasized the need to improve provider performance in underserved communities. In terms of funding, some participants suggested that the government subsidize quality improvements in inner city long-term care institutions and agencies; others suggested scaled pay for performance systems giving greater incentives for quality improvements in low-performing providers. On the research front, participants suggested looking into differences between short-term and long-term nursing home users, assessment of waiver programs, and the effects of person centered care as a way to alleviate disparities.
Edward Miller, Ph.D., Assistant Professor of Public Policy, Political Science, and Community Health, and Faculty, Center for Gerontology and Health Care Research at Brown University, presented preliminary findings from the Long-Term Care Opinion Leader Survey sponsored by The Commonwealth Fund. The survey was designed to assess LTC opinion leaders' views on the current state of LTC in the United States and potential areas and strategies for reform.
Miller, together with co-investigators Vincent Mor, Ph.D. and Melissa Clark, Ph.D., also at Brown, approached 2,577 leaders in the field of long-term care. They obtained a response rate of 44.5 percent. Among the respondents, 10.6 percent were consumer advocates, 25.9 percent provider representatives, 31.8 percent public officials, and 24.3 percent academics and other policy experts. There were varying levels of consensus among stakeholder groups vis-à-vis the questions asked.
Respondents felt that workforce recruitment and retention, along with financing and quality of care, is among the most pressing challenges facing long-term care. Furthermore, some provider types (hospice, adult day care) were viewed much more favorably than others (nursing homes).
The survey addressed both the paid and unpaid workforce. All agreed that improved work environments and compensation would be effective approaches for recruiting and retaining nurse assistants, home health aides, and other paraprofessional workers. Approximately two thirds felt that care-coordination and counseling, respite, and adult day care would be effective strategies for supporting informal caregivers. There was slightly less enthusiasm for paying family members, though consumer advocates strongly supported this strategy as well.
To better finance long-term care, a large majority felt that payment should be a shared responsibility. Approximately half thought that government programs should cover most costs, or, perhaps surprisingly, that employers should share in the burden. Comparatively few felt that individuals should pay most costs, and even fewer that adult children should contribute. Most favored adding a new long-term care benefit to Medicare, financed by a premium, and almost as many supported government incentives to promote greater savings and long-term care insurance purchases.
Though a large percentage was familiar with resident-centered care or culture change, few believed that more than one quarter of nursing homes had fully adopted it. The most frequently cited barriers included cost, resistance on the part of senior leadership, and regulation. Few felt that the federal government was doing well or very well regulating nursing homes or home health care agencies. However, large percentages believed that aspects of the nursing home model of long-term care regulation should be applied to assisted living as well.
A majority of respondents believed that payment incentives such as pay-for-performance would be the most effective way of ensuring and improving quality in long-term care. Consumer advocates were much more likely to favor more aggressive regulatory enforcement and higher staffing requirements, while provider representatives were much more likely to favor increased payment rates. Disagreement in this and other areas shows where consensus building efforts are especially necessary, not only to meet the demographic challenges ahead but also to provide higher quality, more preferred, and appropriate care to the current population of elders.
David Grabowski, Ph.D., Associate Professor of Health Economics in the Department of Health Care Policy at Harvard Medical School and incoming Building Bridges Chair, closed the colloquium with thoughts for researchers and policymakers to consider as they return to their work in long-term care. He challenged the long-term care community to think holistically about care in research and policy instead of fragmenting it into informal and formal sectors. He encouraged participants to continue to disseminate new knowledge about long-term care into broader public consciousness in order to allow the research and ideas generated at the colloquium and elsewhere to truly inform health policy. Finally, he challenged the colloquium participants to think strategically about how to address disparities as an integral part of quality improvement efforts.