The Case of Mrs. Harrison: A Typical Transition?
Mrs. Harrison, a 75-year-old widow, entered an urban academic medical center through the emergency department after she fell in her garden and broke her hip. Once at the hospital, she admitted she had not been taking the best care of her diabetes, and her chronic obstructive pulmonary disease caused her trouble occasionally, especially with all the time she spent in her garden.
After five days as an inpatient at the hospital and a brief stay in inpatient rehabilitation, Mrs. Harrison returned home under the care of a home health agency, with directions to take ten medications—some of them new to her regimen. Mrs. Harrison’s goal was to be able to tend her garden again. The care team’s goals were to control her diabetes and ensure her recovery after hip surgery.
Once home, the situation deteriorated. Mrs. Harrison’s community primary care physician had no idea she had been hospitalized or what had happened with her in-hospital care. Mrs. Harrison’s two children—never the best of friends—couldn’t agree on how to manage her care, and her son, who serves as the primary caregiver, had to return to work even though he had been promised time off to care for his mother. As a result, Mrs. Harrison had no transportation to her follow-up medical appointments. Someone told her there might be a community agency with people who could drive her to the appointments, but Mrs. Harrison didn’t know who to contact or how to set this up.
Additionally, Mrs. Harrison’s home health agency caregivers didn’t show up on time, or as expected. When Mrs. Harrison left rehab for home, she had been given a list of medications, but now she wasn’t sure what medications to continue or stop taking. She didn’t particularly care anyway, since she couldn’t afford all of the medications.
Mrs. Harrison was especially confused when her medical bill began arriving: she didn’t know what her insurance would cover or where to turn for answers. She was having difficulty coping with post-surgery mobility changes, and was becoming increasingly depressed because she could not get around as she had before. Mrs. Harrison felt terribly isolated now that she was homebound; worse, she was terrified to go into her beloved garden because she thought she might fall again and have to return to the hospital.
Mrs. Harrison’s experience begs this question: Is this woman’s situation unique, or is this what a typical transition to home looks like for the nearly 1 million older adults hospitalized each year? Those experiencing our care system may find Mrs. Harrison’s situation familiar: the lack of communication between care providers and settings, the confusion about self-management tasks, the unpredicted complications once in the community, and the discrepancy between the older adult’s goals and those of the medical team.
While consumers, providers, policy makers, and other stakeholders are talking more and more about care transitions, the phrase does not mean the same thing to all people. The American Geriatrics Society (Coleman and Boult, 2003) defines care transitions as:
…a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location…. Transitional care is based on a comprehensive plan of care and the availability of health care practitioners who are well-trained in chronic care and have current information about the patient’s goals, preferences, and clinical status. It includes logistical arrangements, education of the patient and family, and coordination among the health professionals involved in the transition. Transitional care, which encompasses both the sending and the receiving aspects of the transfer, is essential for persons with complex care needs.
Much of the work on transitions of care has only just begun to evolve into care initiatives that seek to address transitions issues via systematized processes. Many models have been developed and researched to provide transitional care services and are described in great depth in this issue of Generations, including the Care Transitions Intervention (Coleman et al. 2006), the Transitional Care Model (Naylor et al. 2004), Project RED (Re-Engineered Discharge) (Project RED, 2012), the Enhanced Discharge Planning Program, also known as Bridge (Altfeld et al. 2012), and Better Outcomes for Older Adults through Supported Transitions, or Project BOOST (Williams and Coleman, 2009).
To understand the value and impact of these programs, it is important to examine how we got to this point in the care transition discussion; the present state of our healthcare system that makes transitions problematic; and what the future might hold, should care transitions improvements become commonplace.
The Healthcare System and the Evolution of Care Transitions
Traditionally, the U.S. healthcare system has been focused on acute care needs, which have been served with acute care tools. It was created to address time-limited and specific illnesses or injuries as they occur in episodes, driven by restrictions dictated by Medicare, Medicaid, and private insurance policies (Wagner et al. 2001). This medical system may have been adequate in past decades, when a diagnosis such as diabetes or congestive heart failure was a death sentence, but its structure fails to address the increasingly complex and long-term needs of people with chronic conditions. Four in every five older adults have at least one chronic condition; many will live with that condition for years (Centers for Disease Control and Prevention, 2003). While these individuals may experience acute illnesses throughout their lifetime, these episodes will be complicated by the presence of a chronic condition that must also be attended to by both the medical and long-term services and support systems.
Meanwhile, a robust network of LTSS providers exists that is capable of providing continuous, coordinated service. The need for, access to, and delivery of LTSS is related to, but distinct from, healthcare services. The Medicaid program formalized links between healthcare and LTSS by providing a funding stream for institutional care in 1965, but the development of the LTSS delivery system has occurred outside the healthcare system. Long-term services and supports have different providers, respond to needs of consumers for longer periods of time, have a different delivery system, and, with the exception of Medicaid (the primary payer), is largely paid for out of pocket and not through insurance, as is healthcare. As a result, LTSS providers work primarily outside the medical system and often are without adequate financial support.
The LTSS system most often attends to an older adult’s non-medical needs, focusing on the psychosocial, environmental, emotional, financial, and interpersonal issues that people encounter as they age (Woodstock, 2011). These service providers often forge long-term relationships with older adults and families and are a source for important details about the realities of an older adult’s life in the community. However, community-based LTSS providers are rarely called upon by the medical system to provide insight into an older adult’s situation. Likewise, LTSS providers don’t often ask for details on an older patient’s health from the medical team, relying instead on reports from the patient and their family.
America’s current health system, with its focus on medical care, often misses the psychosocial factors that affect an older adult outside of the healthcare system and influence the way the patient engages in their care within the medical system. When the LTSS system is not consulted, medical providers overlook issues like finances, transportation, literacy, and the existence of a support system (Payne et al. 2002). The older adult and their family are then left far from receiving the care they want and the care provided is more expensive, less effective, and less person-centered than it could be (Coleman, 2003).
Instead of bringing the medical and LTSS systems of care together in a collaborative relationship, building upon the experience with an older adult and their family that comes from the medical team and LTSS providers, the system responds to a long series of strung together acute care episodes. Vital information about the patient’s health, goals, and values is not carried over from episode to episode and must be recreated, despite the existence of perhaps a long history with both service systems. How can we put patients at the center of care when we forget everything we have already learned about them each time they come back for services?
The term “silos of care” is often used to describe this unique and disconnected network of providers, information, and payment systems developed to address a host of acute and postacute care issues (Siu et al. 2009). While an older adult may be served by an array of care providers across numerous settings—hospitals, skilled nursing facilities, home health care agencies, ambulatory care systems, inpatient rehabilitation, long-term acute care, home- and community-based services, and Area Agencies on Aging—these providers often don’t communicate, coordinate care, or even speak the same language, despite a shared goal of promoting the health and wellness of their charges. While silos persist, a siloed system is inadequate, inefficient, and costly.
A Further Distinction: What Care Transitions Are Not
While we have defined and described what care transitions are, we have not established what care transitions are not. As described closely in this journal, care coordination is long term and team-based, and does not require a transition to be engaged. Care transitions are a part of comprehensive care coordination, but are not comprehensive care coordination by themselves. They are a short-term response to the coordination needs of older adults at a particular point in their care. Care transitions are the acute care version of more chronic care coordination. While the focus of care transition is on preventing re-admission, care coordination seeks to prevent admission in the first
This all begs the question: If we had good care coordination, would a focus on care transitions even be necessary?
Also, care transitions are not just from hospital to home, despite emerging models’ overwhelming focus on this type. Older adults experience many other transitions—home to nursing home, from one home healthcare agency to another, or from nursing home to hospice. These transitions receive far less attention and are supported by far less evidence on best practices that ensure safe transfer of the person, information-sharing, and accountability. While the hospital-to-home transition offered an accessible place to start developing models of care, these models—and new ones—need to be expanded or developed to address all the transitional care needs of today’s older adults, in multiple settings.
Care transitions are also not “one size fits all.” Older adults belong to many diverse populations with different needs based upon community, culture, and condition. Urban, suburban, and rural transitions can be different. Older adults may have different language needs or a different understanding of their care goals based upon cultural values and norms. They may have different needs because of functional or cognitive declines. These are all situations in which the standardized transitional care models described in this journal may need to be adapted.
Standing at the Crossroads of Care: Challenges Ahead
Our medical system is at a crossroads where the growing need to focus on chronic care is at odds with its current focus on acute care. A large LTSS network is in place to meet the psychosocial and service demands of chronic care in the community, but it requires providers in the medical system and in the communitybased system to think and take action beyond their own silos.
As stated above, older adults’ chronic care needs are increasing because of growing rates of chronic disease. As well, financial incentives for the medical and LTSS systems are changing. These trends create a need for more coordinated care across all systems and between providers that are engaged in an older adult’s health and well-being. The Affordable Care Act (ACA) calls for an increased emphasis on avoiding thirty-day re-admissions as a measure of the medical system’s success. The impetus to avoid re-admissions is driven by a 2009 report by MedPAC (the Centers for Medicare & Medicaid Services’ independent advisory council), which stated that up to 76 percent of re-admissions may have been preventable, representing a potential annual savings of $12 billion (Medicare Payment Advisory Commission, 2009). The report drew a connection between chronic care, readmissions, and healthcare costs, which brought attention to the need for innovation outside the siloed acute care world, and made a case for many of the incentive changes we now see.
But, the medical and LTSS systems are only just now turning to coordination, and there is still much debate over the best and most efficient ways of doing this, as well as about the financial impact of improved coordination beyond reducing thirty-day re-admissions rates. There are, however, two first steps we can take.
Communication is key
The first step is communication, which up to this point has been complicated by the two systems’ inability to find a common platform for communicating. Effective communication requires both systems to become bilingual: to not only learn the other system’s language, but also step into that system’s “shoes” and understand the other system’s value—as well as its bottom line. We have the tools to do more to support our nation’s older adults within and across both systems, but we are only now learning how to bring the two systems together effectively, beginning with the care transitions models mentioned in the previous section.
These care transitions models take different approaches, but they all adhere to the same principle: care transitions are more than just a person moving from one setting or provider to another; they also encompass the transfer of information and the need for accountability.
Accountability is of the utmost importance in achieving smooth care transitions. Currently, the responsibility for care transitions is diffuse—ownership of a successful care transition can fall to everyone involved in an older adult’s care, or to no one. More often than not, the responsibility is that of the older adult and their family, who may not be prepared to navigate the complicated networks involved in any transition. The shifting financial incentives brought forth by the ACA through provisions such as accountable care organizations, the Hospital Readmissions Reduction Program, and patient-centered medical homes address many issues of accountability from the medical system’s perspective, but they may not provide enough incentive to engage LTSS providers and other entities currently providing chronic care coordination.
Ongoing challenges to successful care transitions
Institutional barriers stand in the way of successful, safe care plans when patients’ needs require LTSS. Right now one of the most significant barriers to coordination is fragmented data; if information does not transfer between providers with each transferring older adult, each provider must start their assessment and care planning over at the beginning. This applies across settings, and may also be a barrier for different episodes within the same setting where patient records are not electronic, or available in real time. Other challenges include inappropriate end-of-life care resulting in unnecessary, expensive procedures; medication issues; reduced quality of life; and patients leaving the hospital quicker and sicker.
Often, at-risk patients are not properly identified at discharge, and the lack of coordinated post-discharge follow-up allows small issues to become crises. This is exacerbated by older adults and families taking on more serious self-management responsibilities because of earlier and earlier hospital discharges, which creates greater opportunity for complications once a patient returns home. These challenges represent an opportunity for collaboration between the medical and LTSS systems.
System Change: Improving Care for the Future
America’s medical system, not designed to serve chronic care needs, is now attempting to take on this role without quickly or adequately adapting its tools, innovating its systems, or using resources available in the community. This does not need to be the case. Programs emerging now will improve the system’s capacity to engage in both care transitions and more holistic and chronic care coordination. However, true change will require a ground-up redesign beyond the medical model.
Outcomes from federal and local demonstration projects and provisions of the ACA (explained in this issue) will provide further evidence to support the widespread adoption and maintenance of these programs. This will ensure that even organizations that do not take part in the early phases of these programs will benefit from the evidence they generate, the attention they bring to care coordination, and their future integration into routine care.
Without addressing the obstacles outlined above, we will continue to move forward with a partial view of older adults—one seen through an acute and medical lens, rather than seeing a person with a story, a family system, and a community. Community-based organizations, the LTSS system, and the medical system will continue to speak different languages. We will continue to struggle to know who, what, and how much we should intervene to ensure the health and well-being of America’s older adults.
If done right, older adults will experience a more holistic care system—one that integrates medical providers and community-based organizations, providing comprehensive care coordination that includes care transitions as a vital component to ensure elders’ health and safety. But we have to demand it from our healthcare system because it does not yet exist.
In an ideal system, healthcare professionals will work across the care continuum, with older adults being better supported in the community where they live and only being admitted to hospitals when their medical needs are complex. They will understand that different populations encounter different transitions and need different care during those transitions, and that family caregivers are an integral part of the transition team. Electronic medical records will work across silos, and so will people, using increasingly available technology in every other facet of life to share information seamlessly across settings and time. There will be a system built on the skills and knowledge of an inter-professional team, which includes home- and communitybased service providers of LTSS, and that fully engages patients and their families.
But this ideal will not evolve without thoughtful dialog and considerable work. This issue of Generations starts this conversation by providing a comprehensive look at care transitions. Articles herein discuss how transitional care interventions have emerged as an important strategy in improving health outcomes and in preventing adverse events for older adults.
What is the role for the aging services network, which is inching its way to the table to become a player in the systemic change needed to address these issues? When we collaborate to figure out the answer, people like Mrs. Harrison will be able to attain the goals that matter most to them—like spending more time in their gardens and less time as patients.
Robyn Golden, M.A. L.C.S.W. a former chair of ASA’s Board of Directors, is director of Health and Aging, Rush University Medical Center, Chicago, Illinois. Gayle Shier, M.S.W. is program coordinator, Health and Aging, Rush University Medical Center.
Editor’s Note: This article is taken from the Winter 2012-2013 issue of ASA’s quarterly journal, Generations, an issue devoted to the topic “Care Transitions in an Aging America” ASA members receive Generations as a membership benefit; non-members may purchase subscriptions or single copies of issues at our online store . Full digital access to current and back issues of Generations is also available to ASA members and Generations subscribers at Ingenta Connect. For details, click here.