You can watch the presentation by Joanne Lynn, MD, on improving care for our frail elderly given at the 2013 Bioethics Symposium.
By Anne Montgomery
Leaning into the podium at the Graduate Center of the City University of New York on May 14, Judy Feder, professor of public policy at Georgetown University, is poised and intent. She is speaking to a room full of researchers, advocates and academics who are hoping to ignite a national conversation about why now is the right moment for family caregivers to underscore their importance to the U.S. health and long-term care system.
But first, Feder administers a reality check: Despite ”overwhelming evidence” that caregivers are “the essential glue” in our health care system, they are often met with “disregard” or “disrespect” by large institutions and individual practitioners, she said. Moreover, the very fact that family caregivers are the “dominant source” of help for 80% of ill, frail and disabled individuals living at home and in the community contributes to concerns about so-called “crowd-out” costs: The “fear of replacing” unpaid family caregiver labor, she said, has led policymakers and providers to count on their support as a “fiscal convenience.”
A classic example of this overreliance on family caregivers, according to Feder, is the massive (though rarely discussed) shift of responsibility that occurred following implementation of Medicare’s prospective payment system (PPS) for hospitals during the 1980’s. As hospitals realized that it was in their financial interest to discharge patients more rapidly (often referred to as “quicker and sicker”) under a PPS system, the result for family caregivers was that they were asked to take on much more – often without any discussion, and with no preparatory training or sustained support. “All of this happened with no thought,” Feder said.
Concurrently, a growing body of evidence — including a recent survey conducted by AARP and United Hospital Fund (UHF) – has established that family caregivers are routinely undertaking ever-more complex medical and nursing tasks. For example, it is now common for caregivers to be expected to assist with ostomy and wound care, administration of intravenous fluids and injections, preparation of foods for individuals on special diets who have trouble chewing or swallowing, and management of ventilators and tube feeding systems. The net outcome, Feder observed, is that family caregivers find themselves under increasing pressure to “turn their homes into hospitals.” Changing this dynamic, she added, will require serious work. In a call to action, Feder declared: “The support of caregivers should not be merely “assumed,” but rather it must be “thoughtfully considered….We need to turn this around and get past the lip service.”
Others at the UHF conference, titled “Transitions in Care 2.0,” (which culminated in the release of a ten-step action agenda) were in full agreement. Susan Reinhard, Senior Vice President of AARP’s Public Policy Institute, observed that the recent AARP-UHF survey documents that more than two-thirds of respondents report significant difficulty with certain tasks — notably wound care, assisting with the use of incontinence equipment and preparation of special diets. Helping a family member or friend cope with a colostomy is not a traditional ADL,” [Activity of Daily Living] Reinhard said. The ADL assessment instrument, which focuses on basic, non-medical assistance with eating, dressing, toileting, bathing and transferring, was originally developed in the 1950’s as a way of measuring the help that patients recovering from hip fractures needed.
Mary Naylor, a professor and researcher at the University of Pennsylvania School of Nursing, argued that in the era of the “age wave,” providers should reframe their professional perspective to see themselves in part as “enablers of patients and family caregivers.” Both Eric Coleman, professor of medicine at the University of Colorado and Luke Hansen, professor of medicine at Chicago’s Northwestern University, noted that it is still uncommon for physicians and hospitals to collect any data on family caregivers — and even rarer to train them. This presents problems, they acknowledged, in making various improvements in the care system “stick.” Feminist author and caregiver Alix Shulman suggested that it is precisely the lack of “anticipatory guidance,” or training, which individuals who choose to make major changes to their lives in order to assist a seriously ill or disabled loved one find most difficult of all. “Specific conversations are needed,” she said. “Not just a list of websites or a stack of brochures.”
UHF’s David Gould and Carol Levine urged researchers and policymakers to join together to support caregiver assessments that include documentation of both the needs and limitations of caregivers as part of the routine delivery of health and long-term care services. Also needed, they said, are regular surveys of both the patient and the family caregiver’s experience with services, as well as a more sophisticated and systematic approach to identifying the networks of family, friends and neighbors who come together to form a “caregiver corps,” or circle of support, that can be assembled to collectively provide the right level of help at the right time.
Making the necessary adaptations to our rapidly evolving health and long-term care services systems in order to cost-effectively train large numbers of people who may be willing to volunteer some of their time to assist those who wish to age in place is not a simple matter. Perhaps one way to move a conversation forward is to consider whether the Center for Elder Care and Advanced Illness concept of a Caregiver Corps of trained volunteers can be created to help teams of health care practitioners and direct care workers deliver a more seamless array of services and supports – while also giving families the confidence that they will be able to sustain assistance for the millions of frail elders and individuals with disabilities who want to remain a vital part of the community right up until the ends of their lives. Such a Corps, which would recruit volunteers young and old, would be a step toward addressing workforce shortage issues, and might give communities ideas and strategies they can adapt to solve pressing concerns. Now is the right time for family caregivers and their many allies to work together to think through the possibilities.
Key words: United Hospital Fund, care transitions, family caregivers, Caregiver Corps, Mary Naylor, Eric Coleman
By Dr. Joanne Lynn
The latest issue of JAMA features our paper describing an exciting and successful initiative from the Centers for Medicare and Medicaid Services (CMS) and fourteen of its quality improvement organizations (QIOs). Grounded in quality improvement methodology—plan-do-study-act–this unusual project offers many insights for those aiming to reduce avoidable readmissions. And its raises a number of important question about how we measure progress in reducing readmissions. (For more on that topic, see our earlier MediCaring blog, https://medicaring.org/2013/01/07/readmissions-count-should-cms-revise-its-calculations/ )
A Medicare patient’s ability to receive successful treatment during care transitions from one setting to another has a crucial effect on the overall cost and efficiency of the Medicare system. Errors in information transfer, care planning or community support can cause hospitalizations, rehospitalizations and unnecessary costs to the Medicare program.
This project involved a three-year, community-based effort to improve the care transition process for fee-for-service Medicare beneficiaries. Participating QIOs facilitated cooperation among providers, health care facilities, and social services programs, such as Area Agencies on Aging. They centered their efforts around each community’s unique needs. QIOs worked with communities to understand their own particular causes of readmissions, and to implement appropriate, evidence-based models to address them. Communities analyzed results of the intervention along the way, and changed course to stick with interventions most likely to work.
The results, when compared to 50 comparison communities, showed significant reductions in hospitalizations and rehospitalizations, both by an almost 6% average, saving Medicare $3 million in hospitalization costs per average community per year.
This correlation has already led to new national efforts such as Partnership for Patients and the Community-based Care Transitions Program. In addition, in the 10th Scope of Work, all 53 QIOs are leading community projects nationwide (so far, in more than 400 communities).
This paper may be the first time one of America’s leading medical journals has published a report based on QI methods. Doing so represents a profound change in the openness of American medicine to learn not only what works for a patient, but works for the delivery system, too.
key words: quality improvement, care transitions, CMS, CFMC, Joanne Lynn, readmissions, community coalitions, JAMA
by Dr. Joanne Lynn
When community coalitions apply for funding from the Community-Based Care Transitions program of the Centers for Medicare and Medicaid (CMS), they have to show that they will reduce hospital readmissions by 20% and will save money for Medicare. Funding recipients will be held to those two outcomes in evaluating the contract.
In general, CMS intends to evaluate these programs by applying the 20% reduction to the rate of rehospitalization: that is, rehospitalizations/[live discharges]. If a community’s baseline rate in 2010 was 15%, then 20% of 15% is 3% and they’d have to reduce rehospitalizations to 12%.
If hospitalization itself remains stable, these are the same goal numerically.
However, much of what is done to reduce 30-day rehospitalization also reduces hospitalizations beyond 30 days, and sometimes even hospitalizations without antecedent hospitalizations. If patients learn more self-care, use more hospice, obtain more support in the community, and so forth, then the use of hospitalization outside of that 30-day window may decline as well. And it does not take a lot of decline in that rate to mimic the decline in 30-day rehospitalization, making it a challenge to change the rate of rehospitalization/hospitalization.
Suppose, for example, that a community had 10,000 hospitalizations and 1,500 30-day rehospitalizations in 2010. Suppose the CCTP work changed the rehospitalization number by a full 20% – cutting it to 1200 per year by 2014. But that good work also cut down on hospitalization by 10% — yielding 9000 for the denominator. Then 1200/9000 would be just a 13.3% rate, and the team would have missed the goal of 12% — even though it had actually done a terrific job.
It is always risky to use a rate where the denominator is presumed to be stable but actually can respond to some of the same interventions as the numerator.
Using the N of 30-day rehospitalizations has its risks also – a bad flu year or a decline in community-based support could push it up, as could an influx of patients that increases the denominator. It can also have spurious improvement if many patients are moved from FFS to managed care.
For now, it seems that the prudent thing to do is to convince CMS that they should keep the question open and make it legitimate for CCTP and providers to pursue the reduction in numbers only rather than the reduction in the rate.
key words: CCTP, readmissions rates, CMS, care transitions
The P2 Collaborative of Western New York [name was changed to Population Health Collaborative in 2017] represents a different spin on the Community-based Care Transitions Program (CCTP) model. It is unique in its focus on a very rural area of Western New York, and is unusual in that it is one of a few community-based organizations in CCTP that is NOT an Area Agency on Aging. P2 is a non-profit regional health improvement collaborative, with origins as a Robert Wood Johnson-funded Aligning Forces for Quality community project. Through that work, it has engaged in various activities within eight counties in Western New York.
As Megan Havey, Manager of Care Transitions, explains, “P2 doesn’t provide direct services, but acts as a facilitator to members of the collaborative.” The scope of the project really called for coordination by a regionally based group, one that could work with and understand the diversity of partners, and that could offer the sort of infrastructure support that such a collaborative would require.
The collaborative is one of the largest in the CMS CCTP portfolio. It includes eight local community-based organizations (CBOs) and ten hospitals, and works with other community agencies, organizations, and foundations including the Health Foundation for Western & Central New York, IPRO (the QIO), the Alzheimer’s Association, local hospice organizations, and county health departments. The work sprawls across seven counties, with programs that aim to serve more than 2,600 patients annually. The diversity of participating organizations is remarkable, ranging from a 5-bed to a 150-plus-bed hospital.
Over the last six years, many of the participating organizations had participated in pilot programs to improve care transitions. Other groups had little experience, but, Havey says, “…were in a great position to be mentored by groups that had experience.” In building the application, IPRO helped with many tasks, such as creating templates to conduct the required root-cause analysis, analyzing admissions data, and convening partner organizations. Havey says that although IPRO has now “stepped back” from the project, P2 continues to solicit IPRO for technical assistance and support.
The application process was instructive, Havey says, in helping the partners to appreciate just how flexible the project would need to be. “Each county had a very different target population and model,” she says. “It was important to be able to engage partners and obtain their buy in, but also to be realistic about what we could achieve in each county. We could not create a cookie cutter model.” All of the local CBOs and hospitals are using the Coleman model, the Care Transitions Intervention™, and are targeting Medicare Fee-For-Service patients.
Havey says that developing a web-based data platform that all partners could use has been an essential step. The platform had to accommodate the range of reporting capacity partners bring to the project. To that end, P2 worked with a software company to invest in and develop a platform all hospitals could use to enter data about eligible patients. The system operates within the context of the Care Transitions Intervention, and allows care managers to document data about home and hospital visits, as well as follow-up calls and evaluation information.
Havey notes special challenges in serving a rural population, particularly in terms of accessing care. There are not enough providers, she says, and transportation to get to them can be difficult. “Rural counties have very poor health outcomes, with many medically underserved areas and populations. Our goal is to reduce readmission rates with an intervention that leads to better health outcomes and improves quality of life.”
Key words: care transitions, CCTP, Section 3026, rural residents, readmissions
By Dr. Kyle Allen and Susan Hazelett
The Summa Health System/Area Agency on Aging, 10B/Geriatric Evaluation Project(SAGE) is a collaboration between an integrated health system and the local Area Agency on Aging which was begun in 1995. SAGE provided the organizational structure to develop the resources and processes needed to effectively integrate geriatric medical services and community-based long-term care services. Such integration is essential to bridging gaps between acute medical care and community-based care, enabling medical and social services providers to reach frail older adults living in the community with multiple chronic conditions, and to improve their quality of life. The SAGE project, which operates in the Akron, Ohio, metropolitan area, has managed to do just that. Results of the 17-year collaborative indicate that consumers, health care systems, health care providers, and payers have all benefited from the focus on integrating service delivery.
In the early 1990s, Summa Health System (SHS), an integrated not-for-profit health delivery system, had launched several projects aimed at improving care for frail elders. Summa comprises six community teaching hospitals with more than 2000 beds, as well as its own health plan, skilled home care, hospice, and a foundation. Summa’s insurance plan has 150,000 covered lives, including a Medicare Advantage Plan of 23,000.One of the projects being tested at Summa was the ACE (Acute Care for Elders) model, a model of hospital care delivery aimed at improving the functional status and clinical outcomes for hospitalized older adults. Recognizing that this model did not have the necessary patient connection in the outpatient setting, Summa realized it would need to expand its reach to elderly patients across the continuum of care. To this end, it created the Center for Senior Health (CSH), an outpatient consultative service that supports primary care providers by offering an interdisciplinary, comprehensive geriatric assessment; high-risk assessment; a geriatrics resource center; a clinical teaching center; inpatient geriatric consultation and outpatient consultation followup. The CSH attempts to treat and reach the whole patient by addressing acute and chronic medical needs, psychosocial needs, and family concerns. Despite the range of services provided, the CSH continued to be limited in its scope because it did not have access to patients in their homes, nor could it provide long-term case management. As a result, it began to rely increasingly on community-based long-term care agencies for this kind of information and management.
At about the same time, the Area Agency on Aging 10B, Inc. (AAA) found itself managing a growing number of consumers with functional decline, geriatric syndromes, and multiple chronic illnesses. The AAA, which serves more than 20,000 elders in Northeast Ohio, recognized that it needed to be better integrated with the acute medical sector if it were to achieve its goal of delaying and preventing nursing home admissions.
Leaders from Summa Health and the AAA recognized the challenges and deficits each one faced in providing continuity of care to patients/consumers, and began meeting to discuss how they could build a new, integrated model of care. They realized that they shared a common goal and vision to improve care for frail elders, and launched SAGE, which provided the organizational structure needed to effectively integrate their services. SAGE had no grants or funding, just a spirit of collaboration and cooperation, and a common desire to do more than just business as usual.
A SAGE task force was created comprised of staff from both organizations, including physicians, nurses, and social workers, as well as senior leaders, to promote communication, provide feedback, and create initiatives that linked the two. The group met monthly for two years, and now meets quarterly. Among its early objectives were the development of protocols to screen and identify at-risk older adults, to establish mechanisms for information sharing and resources, to identify gaps and duplication in service delivery, to locate a AAA case manager at the CSH, to educate staff from both organizations, to collect data and information, and to identify and address barriers to implementation.
Eventually SAGE created an RN care manager assessor program, in which placed an AAA assessor in the acute care hospital. The assessor works closely with the ACE team to identify hospitalized patients who can benefit from community-based programs, as well as patients who are eligible for PASSPORT, the state’s Medicaid waiver program. This was a new initiative for the AAA, which had traditionally conducted these assessments post-discharge, in the patient’s home. That assessment now occurs before the patient is even discharged from the hospital, thus helping to determine needs for community based services and facilitating the process for eligibility and approval for Medicaid long term care benefits. This is beneficial because patients will typically receive Medicare covered services for skilled needs but long term care needs are not addressed as well and the Medicare skilled benefits are provided for only a limited time usually < 30 days. Without the other supports this vulnerable population is at risk for poor health care access, emergency department visits and hospital readmission. The AAA then assumes case management for the consumer, and offers periodic geriatric follow-up.
This program has facilitated improved capacity management for complex patients in the acute care hospital. It improved AAA communication with primary care and hospital staff, reducing repeat hospitalizations, ED visits, and nursing home placements. It improved outcomes for complex patients, and decreased discharges from PASSPORT to nursing homes. During the pilot period, referrals to and enrollments in the PASSPORT program doubled. The AAA was also successful in replicating this model at other hospital systems in the Northeastern Ohio AAA service area. A more recent positive outcome related to this collaboration work was the awarding for AAA 10b Inc. one of the first seven Community Based Care Transitions projects from CMS/CMMI as part of the The Community-based Care Transitions Program (CCTP), created by Section 3026 of the Patient Protection and Affordable Care Act
In developing SAGE, several barriers had to be overcome, primarily those affecting leadership of the program, development of an effective multidisciplinary workgroup, and resources (in terms of staff time). The program can be adapted by other communities around the country, offering their acute medical system and community-based programs a way to align their services and collaborate in ways that better address the needs of frail older adults.
Key words: community collaboration, SAGE Project, ACE Units, CCTP, 3026, pilot programs
Older residents (with fee-for-service Medicare) of a four-county region around Rochester, New York, are likely to benefit from the innovative programs being launched by a community-based care transitions project (CCTP) in that region. The “Community-wide Care Transitions Intervention” is anchored by Lifespan of Greater Rochester, a non-profit organization funded mostly by the Administration on Aging. The collaborative effort includes four acute care hospitals , two home health care agencies, and the regional independent health planning organization.
Of particular interest to MediCaring readers may be the involvement of the hospital pharmacist in this endeavor, which seems to be a key development to addressing the common problems of medication mismanagement. MediCaring talked to pharmacist Andrew Smith of Strong Memorial Hospital, and Brenda Bartock, RN, MPA, director of program development for Visiting Nurse Service of Rochester and Monroe Co., Inc.
Smith explained that he receives a daily list of hospital admissions from which he selects the best candidates for the pharmacist intervention. The “best” candidates include those with what the program characterizes as an active Preventable Quality Indicator (PQI) diagnosis, or characteristics that put them at risk for re-hospitalization, such as comorbidities, polypharmacy, previous hospital admissions in the last year, or other risk factors such as living alone, absent social supports, or no transportation. Smith then follows these patients during their hospitalization, meeting with them as soon as possible to discuss the enhanced hospitalization program and his availability to help them with medication. He will meet with them again near discharge, when he reviews medications with each patient (and family), focusing on what’s changed during the admission and what’s new, and letting them know that he is available to answer their questions. Using software called the Medication Action Plan, Smith gives patients an easy-to-read yet comprehensive medication list that they review together. He makes sure that prescriptions match insurers’ formularies and that schedules are workable for patients and family caregivers. Five days after discharge, he calls patients to follow up, making sure that they have not run into problems obtaining or using prescribed medications.
This is quite different from the usual process, in which there is no formal discharge planning with the pharmacist. Ordinarily, hospital pharmacists review what a patient has been prescribed during the stay, and not what was being used before the hospitalization. And although the pharmacist might occasionally see patients, that is not the norm.
Smith told MediCaring that, just three weeks into the program, he has seen some changes being made. He offers services that the medical team often simply does not have time to address, such as helping patients to understand the need for a new medication and helping them to reconcile pre-hospitalization medication routines with post-hospitalization routines.
Because the program was just launched in June, Smith says there has not really been an opportunity to see its effect on patients. He is not yet sure that the five-day follow-up call is the best timing. Smith also notes that the process enables him to work more closely with physicians to develop medication management plans, providing doctors with information they welcome because it helps them to ensure that patients have workable routines.
According to Bartock, the pharmacy intervention helps to strengthen the program, and the case management it provides. She says patients coming into the transitions program who have received the pharmacy intervention tend to be “in better shape than those who don’t have it.” In general, patients who are offered the intervention agree to participate in it. In just under three weeks, Smith says, he had seen approximately 20 patients.
Those interested in learning more about the Lifespan work can contact Mary Rose McBride at 585-244-8400, ext. 112 or 585-787-8376.
Key words: CCTP, care transitions, pharmacist, polypharmacy, frail elders, discharge planning
Since 1995, Ohio-based Summa Health System and its partners have led a collaborative, the SAGE Project (Summa Health System/Area Agency on Aging, 10B/Geriatric Evaluation Project), which has worked to improve care for the state’s most vulnerable elders by integrating the aging network, and its social services, with health and medical care. The project aims to integrate a comprehensive hospital-based clinical program with the community aging network to improve the health and functional status of older adults, and prevent institutionalization for those at risk for nursing home placement.
More recently, members from the SAGE project have been working on the PEACE Trial (Promoting Effective Advanced Care for Elders), an initiative funded by the National Palliative Care Research Center and the Summa Foundation. In addition to Summa and the AAA, the project involves the University of Akron, Kent State University, and the Northeastern Ohio Universities Colleges of Medicine and Pharmacy. The randomized controlled pilot study features a geri-palliative care case management intervention for Ohio consumers who are participants in the state’s long-term care Medicaid waiver program, PASSPORT. The intervention involves collaborative care between a hospital-based interdisciplinary care team, the AAA, and the consumer’s own primary care provider.
Like other older adults throughout the nation, Ohio’s community-dwelling patients who had poor symptom control and coordination of care often experienced exacerbations that led to hospitalizations. Frequently, these elders have not documented their advance care preferences, and so arrive in the hospital, where family members are left to make critical decisions for which they are unprepared.
The PEACE Trial seeks to change this dynamic by focusing on health coaching and patient activation for self management, while promoting advance care planning discussions with primary care providers. The target population includes new PASSPORT enrollees over the age of 60 who are living with one of 9 life-limiting conditions. Nurse assesssors—care managers—from the AAA screen patients at the time of their initial PASSPORT assessment; patients are then randomized to the control or intervention group.
AAA nurse or social worker care managers engage with consumers in a variety of activities. Care managers make two home visits, for example, centered on symptom assessment and advance care planning. They review findings with an interdisciplinary team, which makes appropriate recommendations for the patient and the primary care provider. The care manager next accompanies the consumer to one visit with the primary care provider to discuss advance care goals. Following this, the care manager and the palliative care nurse supervisor make an additional home visit to begin to implement the care plan. The consumer then receives up to one year of monthly follow-up visits from the care manager.
Researchers are tracking outcomes, measured at 3-, 6-, 9- and 12- month intervals. Outcomes include symptom management, quality of life/death, relationships, patient activiation and decision making, and depression and anxiety.
An initial challenge was in getting buy-in from care managers, and in changing the culture of the AAA. However, all care managers eventually expressed their appreciation of the value of the project for improving consumer outcomes. The project is working to get more “top-down” support from the AAA so that participating care managers receive the support they need to work with consumers, including education and skills to engage them. The researchers and case managers also realized they needed more formal curriculum to teach effective methods and skills for advanced care planning discussions and goal settings. A second project was developed to create an online learning curriculum through the support of the First Merit Foundation and led by the University of Akron College of Nursing. A key challenge has been to avoid “medicalizing” the care plans, making sure that they attend to human/emotional factors as well as health and medical status.
The program’s strength lies in the strong working relationship among all the partners, particularly in the commitment of the AAA to improve care for frail elders. Partners report that they are “becoming bilingual”, that culture sensitivity and knowledge sharing between the aging network and acute care providers has grown.
For more information, see Results of the promoting effective advance care planning for elders (PEACE) randomized pilot study (2014) by Dr. Skip Radwany et al.
Key words: PEACE trial, palliative care, geriatrics, AAA, collaboration
Your 80-year-old mother, who can’t recognize you due to severe Alzheimer’s dementia, has developed pneumonia after being hospitalized with a broken hip. Her doctor has told you that she might pull through and that the medical team needs your input on how and where she will live after this episode: at home, or at a nursing home, and with what help—family, home care agency, and/or hospice. You realize that you don’t know what her wishes are—and that she can no longer express them. You also don’t know how you, as her sole family caregiver, will be able to take care of her or afford professional help in doing so. Meanwhile, the doctor is asking what measures should be taken, and for how long, to keep her alive. You don’t have the answers to those questions either. Suddenly, you feel very much alone, bewildered and overwhelmed.
In one sense, you’re not alone, as five prominent women writers recently explained during a roundtable discussion that Altarum Institute’s Center for Elder Care and Advanced Illness held on April 13. During the roundtable discussion, “The Last Word: Influential Women Discuss What Matters When Loved Ones Face Aging,” (watch it online on YouTube) the presenters—three of them geriatricians, and all of them influential social commentators and family caregivers—discussed their experiences in caring for aging loved ones and patients. The writers warned that the number of aging Americans who are struggling with these issues, along with their families and friends, is already substantial and growing rapidly.
Pulitzer Prize winning columnist Ellen Goodman introduced the panel with an overview of the state of aging in America, noting that the first members of the huge baby boomer generation will turn age 85 in 2031. This demographic “cannonball” is already hurtling toward us: each day, 10,000 baby boomers are turning 65. Goodman described her own experiences as a caregiver to her mother and related the constant and seemingly impossible decisions she had to make on her mother’s behalf. She noted that her experience has led her to develop a soon-to-be-launched program, The Conversation Project, aimed at encouraging people to think and talk about their preferences and priorities for the end of life.
Indeed, many of us haven’t given any thought to how we want to live out our final months; nor what role loved ones are likely to play during this final phase of life. Without such planning, the last months, when they come, are likely to be disorienting, frightening and overwhelming.
Geriatrician and family caregiver Cheryl Woodson, M.D., speaking from a decade of experience caring for a sick and aging parent, urged caregivers not to feel that they are not doing enough. Many have unrealistic expectations about what they can and should do, and failing to live up to these expectations can leave many feeling guilty and alone.
In fact, Dr. Woodson said, caregivers need to recognize and understand that we are facing social, cultural and demographic times unlike any in our history. We are facing a future with millions more “old old” people who will be more disabled and frail for longer than any previous generation. Caring for these aged loved ones, Woodson said, means “This is not your mama’s caregiving.” Indeed, it is a whole new world.
Dr. Muriel Gillick, a Harvard professor and geriatrician, addressed other unrealistic expectations many hold: The notion that if we simply eat well, exercise plenty and live right, we will live to a ripe old age and die in our sleep. That scenario is not likely to play out for the majority of us, who will, in fact, grow old and sick and die after many years of living with a serious chronic condition.
Author Susan Jacoby echoed this sentiment, pointed to the ways in which we deny the realities of aging and instead rely on the images we see in Viagra ads: That we will all be paragliding in our old age, living out fantasies and walking into the sunset hand-in-hand with our equally spry spouse. Instead, Jacoby suggested, we must pay attention to what we really face and acknowledge the hard realities of that future and find ways in which we can cope with frailty, illness and death.
Journalist Francine Russo gave a slightly different take on the world of caregiving during the roundtable, describing the dynamics of sibling relationships in the context of caring for aging parents. She noted that many of us will revert to roles we played as children, and that those old roles will not serve us well in our efforts to serve our parents—indeed, they can tear families apart.
Finally, geriatrician Joanne Lynn described her experiences as a physician and a family caregiver, noting that in the years when she herself cared for a very sick child and a very frail in-law, she could always find people willing to support her in the former work, but very rare to offer help in the latter. She spoke of the need for neighborliness in the future, for finding ways that communities and individuals can come together to share the common work of caring for the aged. She suggested that reforms must come at the local level and that communities need to set priorities for elder care and advanced illness and determine the shape and course of their own programs and services for frail elders.
The panelists agreed on various steps proposed—ranging from policy changes to discussions families can and should conduct—to plan for the provision of supportive services that preserve the comfort and dignity of frail elders. Such steps should also take into account both the elder’s and their caregivers’ emotional wellbeing and financial solvency from the onset of aging-related disability through death.
CJE SeniorLife, a community-based organization that serves some 18,000 older adults annually, is among the first cohort of recipients for Section 3026 or Community-Based Care Transition Program (CCTP) funding from the Centers for Medicare and Medicaid. One of seven early awardees, CJE will anchor a project that includes three large hospitals in Northern Chicago, as well as long-term services and supports organizations that serve frail older adults.
Medicaring talked to Heather O’Donnell, JD, LLM, CPA, then CJE’s Director of Planning for Healthcare Reform. She said that the process that led to funding has been underway for more than a year, and began when the group first began to consider opportunities that were arising as a result of health care reform, and how it might further its effort to bridge gaps between social services and medical care.
CJE, which had already been involved in care transitions improvement efforts, began to reach out to hospitals in its community, approaching them to find out whether they would be interested in partnering for the CCTP opportunity. Ultimately, three hospitals were selected: Northwestern Memorial Hospital (a major academic medical center), Provena-Resurrection Saint Joseph Hospital, and Provena-Resurrection Saint Francis Hospital. The team also includes Telligen, the Illinois Quality Improvement Organization and local Care Coordination Units. These state-run units, housed in communities throughout Illinois, address the needs of older adults who have complex, ongoing health care needs. Patients who have diagnoses of pneumonia, congestive heart failure, or AMI are targeted, as well as those who have complex conditions or take multiple medications.
The intervention is based on Eric Coleman’s model, which focuses on coaching patients and families to improve self-management skills for chronic conditions and medication management. The 30-day intervention aims to help people access home and community-based services and features a follow-up home visit by a transitional care nurse within 72 hours of discharge. These nurses, who have participated in the Care Transitions Intervention training program, help patients and families to set 30-day post-discharge goals, and to make and keep followup appointments. In addition, CJE received foundation funding which is enabling it to include a social work intervention; very high risk patients are identified and receive followup with a social worker for six months post-discharge.
“We had to adapt the Coleman protocols,” says O’Donnell. “We felt that for some patients, those with chronic conditions and psychosocial problems, thirty-days of followup were insufficient. We found that about 10 percent of the patients in our program would need more support services. That part of our program is not covered by CMS but is funded with private foundation funds.”
O’Donnell says that pulling the project together has taken a great deal of collaboration with the participating hospitals—from the on-the-ground work of finding the right contact people to developing specific strategies for the intervention. “But we felt that this was a good fit with what the hospitals were already doing,” she said. “It is very exciting work, getting every provider in the community to think about the quality of care from the standpoint of preventing an unnecessary readmission.”
Asked whether there had been any problems in bridging the divide between social services agencies and hospitals, O’Donnell said there had not. “This isn’t about us versus them. This is about everybody pulling together and undertaking a new initiative that’s good for everybody—good for the hospital, the nursing home, the patient. It’s a new approach.”
CJE meets regularly with its partners at each participating hospital, although the three are some miles apart and there is no reason to try to pull them all into one meeting. Orchestrating such a meeting, O’Donnell said, would be quite difficult, given how busy people are, and how hard it is to accomplish specific tasks when so many people are involved. “We’ve found it’s more effective to address each hospital and their concerns and our strategies individually.” CJE is, however, convening quarterly meetings of participating nursing homes, at which it hopes participants will talk about their successes, challenges, and processes. CJE is also mindful of the role to be played through partnerships with its local AAA (Area Agency on Aging), which is in the midst of applying for separate CCTP funding. It is also keeping the Department of Health Care and Family Services apprised of its work.
The process of actually launching the program took several months of work with CMS to address questions and concerns and finalize a contract. The application, submitted in August, received final approval in November. The first wave of projects will begin in one hospital on March 1, with other hospitals launching in April and May; ultimately, the project anticipates serving some 2,700 people each year. As O’Donnell notes, “It is a significant undertaking, and there are lots of details to be sorted out.”
She also noted that the relatively quick launch can be attributed in part to ongoing planning for implementation, addressing in advance issues that were likely to come up as the project rolled out. “We had these conversations internally and with hospitals before the application was even approved.”
Key words: care transitions, Section 3026, CCTP, CMS, Coleman model, CJE