Improving Transitions in Care for Patients and Family Caregivers Living in Rural and Underserved Areas: The Caregiver Advise, Record, Enable (CARE) Act

ABSTRACT

In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care. It may fall short, however, in addressing the unique needs of family caregivers living in rural and underserved areas. We contend that to realize the intended safety, cost, and care quality benefits of the CARE Act, especially for those living in rural and underserved areas, states need to expand the Act’s scope. We provide three recommendations: 1) modify hospital information systems to support the care provided by family caregivers; 2) require assessments of family caregivers that reflect the challenges of family caregiving in rural and underserved areas; and 3) identify local resources to improve discharge planning. We describe the rationale for each recommendation and the potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.

Key Points:

1. Recent state laws aim to support family caregivers of hospitalized patients.

2. These laws do not account for the unique needs of rural caregivers.

3. Expanding laws to address rural caregiver needs may improve patient outcomes

KEYWORDS:

• Family caregivers
• policy
• care transitions
• health services research
• hospitals

Based on insights from a randomized controlled trial (RCT) testing the efficacy of a nurse-led, video intervention for family caregiver (FCGs) living in rural and underserved areas and caring for hospitalized patients with life limiting conditions who are transitioning home or to other settings (Holland et al., 2020a), we contend bold action is needed to improve transitions for patients and their family caregivers (FCG) living in these areas (Hudson et al., 2020). In this perspective, we describe the Caregiver Advise, Record, Enable (CARE) Act, groundbreaking state laws intended to provide FCGs of hospitalized patients with knowledge and skills needed for safe and efficient transitions. We maintain that there is an urgent need to expand the Act so that its intended benefits for patient safety, costs, and care quality are realized, especially for aging patients and family caregivers (FCG) living in rural and underserved areas. We provide three recommendations for the expansion and elucidate potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.

For patients with multiple and complex conditions, transitions in care are known to be periods of high risk for re-hospitalization, escalation of patient symptoms, safety issues, and problems with medication administration and dosing errors (Coleman & Roman, 2015; Levine et al., 2010). Interventions to minimize these risks, especially hospital re-admissions, are now touchstones for health-care quality improvement (Levine et al., 2013; Rodakowski et al., 2017). FCGs serve an essential function in health-care systems and are increasingly becoming the target of these interventions, as they often are expected to take on medically related care to assure effective and safe transitions. Surveys show 16–19% of FCGs live in rural or underserved areas, and transitions in care are especially complex for these FCGs to manage (Henning-Smith et al., 2019; Rosenberg & Eckstrom, 2020). In addition to distance from health-care services and access to primary and specialty care, they have fewer options for long-term services and supports, such as home care and respite support (Bouldin et al., 2018). They are more socially isolated, have worse health (Crouch et al., 2017), live in areas with greater poverty, and are more likely to manage caregiving with paid work (Rosenberg & Eckstrom, 2020). Lastly, they often have cultural norms that favor independence and stoicism over reliance on others or showing signs of vulnerability (Duggleby et al., 2010; Henning-Smith et al., 2019; Magilvy & Congdon, 2000).

Since 2016, the CARE Act has been enacted in over 40 states and territories. It aims to assure that hospitals have processes in place for successful transitions out of the hospital (Bangerter et al., 2019; Mason, 2017). Although each state and territory has tailored the statutory language to meet local needs and requirements, each state has retained a common set of CARE Act requirements for hospitals. Hospitals are required to ask patients to: 1) identify a FCG at hospital admission, 2) record the name of that FCG in the electronic health record (EHR) (or record no FCG if the patient cannot identify someone); 3) inform the FCG when the patient will be discharged; and, 4) provide the FCG with education and instruction of the medical-related care responsibilities needed at home (Coleman, 2016). The CARE Act broke ground as the first piece of legislation to formalize the role of the FCG in the health record.

The CARE Act’s implementation and uptake, however, have been challenging for hospitals (Leighton et al., 2019; Rodakowski et al., 2021). Studies examining the law’s implementation have found that hospitals have revised their standing procedures to adhere to the law but have stopped shortat modifying processes to ensure FCGs are engaged in transition planning and receiving necessary education, thus limiting the intended benefits (Fields et al., 2020; Leighton et al., 2019). These same challenges are magnified in hospitals serving patients and FCGs in rural and underserved areas, where health care and public health systems have unstable funding, chronic workforce shortages, and limited access to post-discharge services (Adler-Milstein et al., 2015, 2017; Beatty et al., 2020; Drew et al., 2019).

With the majority of states having passed the CARE Act, states need to invest in addressing the challenges associated with its implementation. Investment may include formal incentives for health systems adherence as well as incentives for evaluations to assess the extent of its implementation and effectiveness (Leighton et al., 2019). To meet the unique needs of patients and FCGs living in rural and medically underserved areas, states should consider expanding the CARE Act to include: 1) modifications to information systems that support the care provided by FCGs; 2) assessments of FCGs that reflect the challenges of FCGs in rural and underserved areas; 3) identification of localized resources to improve discharge planning.

Invest in information systems to support transitions in care in rural areas

Documenting the FCG in the EHR is a marker for CARE Act adherence and a key step for coordinating efforts across complex systems of care (Applebaum et al., 2021; Leighton et al., 2019). Rural hospitals are far less likely than urban hospitals to have a comprehensive EHR system (Adler-Milstein et al., 2015). For those that do, the system’s capabilities for documenting FCGs are not universally available and often needs to be added into EHRs at an additional cost. Given the strength of evidence showing the importance of FCG engagement prior to discharge in reducing re-admissions and costs (Rodakowski et al., 2017), incentives and financial support for adopting EHRs and universal capabilities to document FCG information are imperative. In the interim, hospitals serving rural communities that do not have these capabilities should adopt lower-cost alternative electronic methods for systematic capture and retrieval of FCG information that can be shared across hospital care providers and with patients’ local providers (e.g., spreadsheets or databases).

Embedded in the EHR or alternative capture methods should be flexible options for documenting multiple FCGs, their roles, and capabilities. In rural areas or ethnic cultures where extended families live in close proximity and share care responsibilities, caregiving is often delegated to multiple people. Different family members may be directly involved in care (e.g., providing hands-on care) or indirectly (e.g., assisting with childcare). Choosing one FCG often falls short of capturing the reality that care is provided by multiple people. Likewise, at hospital admission, it is not yet fully understood what tasks patients will need assistance with at discharge, making it difficult to choose the most appropriate person to manage the tasks. Patients may not consider which family members are capable and willing to provide care or who can best manage post-discharge services with local providers. Having a system that is flexible and able to capture multiple FCGs using a systematic method can inform hospital staff about the availability of capable FCG support at discharge.

In addition to having the flexibility to designate multiple FCGs, the expansion of EHR systems should be designed with clear explanations on what patients should consider when designating a FCG, the potential expectations for care responsibilities and an initial assessment of a designated FCG’s willingness and capacity to provide care (Wolff et al., 2017, 2016). Ensuring that a demographically diverse group of FCGs and patients is authentically engaged in this design will be critical to assure acceptability, appropriateness, and identify unique concerns for those living in rural and underserved areas.

Tailor needs assessments to reflect challenges faced by rural family caregivers

We recommend that needs assessments for FCGs living in rural and underserved areas 1) be tailored to reflect the challenges faced by rural FCGs; 2) occur at least 24 hours before discharge; 3) be captured electronically; and, 4) address adequate social support, medication and medical equipment availability, financial support and other local resources needed for successful transition, in addition to comprehensive planning and care explanations (Levine, 2011; Levine et al., 2010, 2013). In our study we have observed that successful transitions in care require an assessment of short- and long-term capacity and willingness to provide care and an assessment of available local resources salient to rural FCGs navigating transitions.(Holland et al., 2020a, 2021)

Implicit in the CARE Act is that discharge coordinators or the hospital nursing staff responsible for transitions in care have assessed FCG’s capacity and willingness to take on care tasks, explained the expected responsibilities a FCG will have, and identified resources that are readily available to help FCGs manage care. When working with patients living in rural areas, ample time is needed to coordinate necessary post-discharge care, especially if the designated FCG is not able or willing to provide care. Local resources in rural communities, such as pharmacies, access to the internet for education and health information, durable equipment suppliers, social support for respite, home health and hospice services are often scarce or limited. Therefore, working with FCGs to assess access and availability well ahead of discharge could help reduce risks associated with transitions in care.

Assessments may at first glance appear to add complexity and additional work for discharge planners and the nursing staff most familiar with patients and FCGs, but the benefits of assuring a prepared transition may, indeed, reduce downstream work by avoiding unnecessary utilization and readmission and ensure patients receive proper care and the FCG, proper support. Hospital administrators should assess their investment in discharge planning in light of these additional responsibilities and their potential downstream cost savings. Data captured electronically will allow for an evaluation of any benefit from this added step and serve as a means of oversight to assure adherence to the practice.

Identify and connect to local or alternative resources to improve discharge planning

Our final recommendation is for state policies to encourage alternative payment models, such as bundled payments, that allow hospitals to match resources to FCG’s unmet needs (Gottlieb et al., 2017). Assessment without connection to the resources that address FCGs needs would undermine the benefits of identifying potential risks associated with transitions in care.

Connecting FCGs to resources would include providing timely communication with local providers about treatment plans (Kripalani et al., 2007), confirming rural pharmacy’s access to all prescribed medications, and identifying in-person and on-line support services that are accessible to rural FCGs. Resources could also include a list of local services, such as food assistance, legal advice, and mental health counseling available through state units on aging or social care networks (e.g., www.findhelp.org). Although historically, FCGs in rural and underserved areas have been more reticent to use resources such as support groups, respite services or adult day centers, resources tailored to FCGs in rural and underserved communities may be better received. Additional research is warranted to determine if, indeed, that is true.

Conclusion

Aging patients and FCGs living in rural or medically underserved areas face unique challenges when transitioning out of the hospital. With state policy modifications to the CARE Act, solutions to these challenges are possible and may allow hospitals serving rural and underserved communities to realize the financial and care quality benefits of the CARE Act.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The study is funded by the National Institutes of Health - 5R01NR016433.