The Caregiver Advise Record Enable (CARE) Act: an opportunity to provide family-centered care

Background

At least 53 million people in the United States (U.S.) are family caregivers, that is, family members and friends who provide unpaid care to patients with serious illnesses (1). This estimate includes approximately 3.4 million caregivers who are children or adolescents (1). Family caregivers across the lifespan form the largest, fastest growing, and potentially most important extension of the U.S. healthcare system. The number of family caregivers in the U.S. has grown by more than 33% since 2015 (2). This increasing reliance on family caregivers partly reflects the impact of the coronavirus disease 2019 (COVID-19) pandemic, which expanded ambulatory and telehealth services that rely heavily on family caregiver support (3).

Caregivers are the invisible backbone of our healthcare system, shouldering responsibilities that were once assumed primarily by trained healthcare professionals (4). Such responsibilities come at a significant cost. Caregivers are at risk for profound mental health challenges, including symptoms of anxiety and depression that are often more severe than those experienced by the patients for whom they provide care (5,6). They also experience disproportionately high rates of financial and employment difficulties because of their caregiver role. Furthermore, caregivers frequently experience their own medical problems that, when left untreated, put them at risk for chronic or life-limiting illnesses, most of which negatively impact women more than men (7,8). Importantly, though understudied (9), it is likely that family caregivers with intersectional identities may experience disproportionately negative consequences of caregiving. Prior research also reports that caregivers in households with low annual incomes disproportionately experience adverse financial and mental health consequences (10).

Multiple calls to action to address caregiver health and well-being exist, most notably, the 2022 National Strategy to Support Family Caregivers (11). Convenings such as the 2023 National Alliance for Caregiving’s Caregiver Nation Summit and the 2022 National Academies of Science, Engineering, and Medicine (NASEM) Workshop on Family Caregiving for People With Cancer and Other Serious Illnesses (12) have also drawn attention to the urgent need for services for caregivers and included concrete steps to implement support and training for caregivers. Despite these calls, our health systems have yet to prioritize widespread, systematic implementation of programs and resources for family caregivers (1).

Programs that identify caregivers early in their role, screen them for distress and preexisting health conditions, and triage them to psychosocial, financial, and wellness care, along with the identification of community resources, would mitigate many of the devastating outcomes caregivers experience. While screening for psychosocial distress and functional impairments is becoming standard practice for patients, especially within the setting of oncology (13,14), the identification and screening of such problems in family caregivers remains an uncommon practice.

The Caregiver Advise Record Enable (CARE) Act

The CARE Act (15) calls for caregiver identification, documentation, and training. The CARE Act requires hospitals to (16):

• Ask patients if they have a caregiver, and if so, to document the contact information of that caregiver in the medical record of the patient;
• Notify the caregiver in advance when the patient is to be discharged or transferred; and
• Provide instruction to that caregiver so that they can provide the care the patient needs after discharge.

The impetus for the CARE Act was a landmark study conducted by the American Association of Retired Persons (AARP) and the United Hospital Fund in 2012 (17). The survey of a nationally representative sample (N=1,677) of family caregivers examined their responsibility for complex medical and nursing tasks such as performing wound dressings, overseeing medication management, administering tube feedings, and managing home dialysis and mechanical ventilation. Of the nearly half of the sample who regularly performed healthcare tasks as a caregiver, 41% felt they lacked the training needed to competently perform those tasks. In a 2019 repeat of the Home Alone study (18), 40% of caregivers still reported lack of training by hospital staff in performing medical and nursing tasks. As of 2023, the CARE Act had passed in 45 states, Puerto Rico, the U.S. Virgin Islands, and the District of Columbia (15), but its implementation has fallen short (19).

With consistent and effective implementation, the CARE Act has the potential to ensure that patients receive adequate care upon hospital discharge by providing notice of discharge, improving caregiver instruction, and allowing caregivers to ask questions of the healthcare team. A significant boost to providing caregiver training, such as that recommended by the CARE Act, was announced in the 2024 Physician Fee Schedule, which introduced new Current Procedural Terminology (CPT) codes to pay for caregiver training either one-on-one or in groups in certain circumstances (20). Importantly, while the CARE Act requirement only applies to inpatient hospital services, identifying and providing instruction to family caregivers across all settings will improve care provision and patient outcomes across the illness continuum and should be considered a best practice in ambulatory care settings as well.

Potential benefits of the CARE Act beyond caregiver instruction

Beyond instruction and training, the CARE Act represents an opportunity to improve caregiver psychosocial health and well-being. While instruction in caregiving skills is an important start, the CARE Act does not require healthcare systems to address financial, physical, and emotional health needs. The Home Alone studies (17,18) noted that family caregivers, including those who received training, experience considerable stress related to providing complex care. The CARE Act could encourage healthcare professionals to improve care for family caregivers by implementing distress and health/functional screening for all family caregivers. Specifically, the CARE Act’s required points of contact (i.e., when patients are transferred or discharged) with caregivers represent opportunities for hospital staff to screen caregivers for distress and unmet needs, provide support and training, and facilitate internal and community-based referrals when additional services are needed beyond what can be provided by staff members initially interfacing with caregivers.

When paired with triage and referral processes, screening procedures may prevent many of the well-documented poor outcomes among caregivers (21). Once a caregiver is identified early in the patient’s stay, a brief distress, functional, and financial screening can be administered by a nurse, care manager, or navigator to identify needs and develop a plan of care to address those needs. Caregivers experiencing moderate symptoms of anxiety and depression, who endorse functional and home safety issues, or whose financial concerns impact their capacity to provide care can then be referred to services. For example, those reporting psychiatric symptoms can be referred to mental health professionals and caregiver psychosocial support programs when available. One exemplar program is the Caregivers Clinic at Memorial Sloan Kettering Cancer Center (MSK), which is used as a model for providing psychosocial support within cancer centers and hospital settings more broadly (22). Similarly, caregivers with functional impairments that impede their ability to care for their loved one can be referred to rehabilitation and home modification services. Those experiencing financial hardship or who need assistance with home care can receive timely referrals to patient financial services and social work, respectively. While most interventions aimed at reducing financial hardship are targeted toward patients, caregivers may similarly benefit. Health insurance coverage is the greatest protection against financial risk but is often tied to employment for people younger than age 65 years. Therefore, sources of affordable insurance coverage outside employer-based mechanisms are needed. Other interventions such as financial navigators, better communication about expected out-of-pocket costs, and employer-based protections including paid sick time and extending accommodations afforded to caregivers under the Americans with Disabilities Act are likely beneficial but remain understudied for caregivers (23,24). Overall, the earlier caregivers are connected to necessary services and support, the greater the likelihood they will provide high-quality care to patients and avoid unnecessary distress (25).

A parallel opportunity for expanding care under the CARE Act involves the creation of health records for family caregivers. While the CARE Act requires caregivers’ contact information to be documented in patient records, concerns around privacy and confidentiality and ethical and legal billing practices arise when caregivers’ health status is comingled with that of the patient. Results of caregiver-specific distress screening protocols and needs assessments can be more ethically stored in separate medical records (26), so that caregivers’ privacy and confidentiality are maintained. The use of separate medical records can then support many facets of caregiver well-being, including long-term care and follow-up of caregivers; implementation of ethical billing practices when caregivers receive services from healthcare professionals; completion of disability claims and Family Medical Leave Act (FMLA) paperwork by caregivers who require time off from work for caregiving responsibilities; and continuity of care into bereavement for caregivers whose care partners die. Such records can also facilitate the establishment and maintenance of hospital-based caregiver support programs, such as the Caregivers Clinic at MSK referenced above, and the Family Caregiver Advocacy, Research, and Education (CARE) Center in the gynecologic oncology clinic at the University of Pittsburgh Medical Center Magee-Womens Hospital (27). The CARE Center identifies and assesses each caregiver and implements a plan of care to address physical, psychosocial, financial, and educational needs. To date, however, there are few examples of parallel caregiver medical records implemented in clinical practice.

The CARE Act presents an invaluable opportunity to intervene on the psychosocial, functional, and financial challenges caregivers experience. However, its uptake and implementation remain limited, and its narrow focus on discharge preparedness rather than broader considerations of caregiver health and well-being represent missed opportunities toward delivering optimal care for caregivers.

Challenges to implementing the CARE Act and potential solutions

While there is no “one size fits all” solution that is viable to address all caregivers’ needs, systemic barriers to identifying caregivers and assessing, documenting, and intervening on their behalf must be overcome. For example, many caregivers may not identify as “caregivers” (28), preferring to think of themselves in terms of their relationship to the care recipient (29), such as “parent” or “partner” or “child”. Such lack of identification as a caregiver may contribute to under-documentation of caregiver status and delivery of support services. Therefore, health systems may need to explore alternative terminology to facilitate self-identification. For example, one caregiver support program asks patients to identify their “primary support person” (27), a phrasing that supports patient autonomy and a relationship-oriented identification (28).

A closely related barrier to identification is caregivers’ tendency to prioritize care recipients’ needs over their own. Caregivers may be reluctant to self-identify or endorse distress and other needs because they feel their attention should be focused on their care partner (30). Moreover, clinicians may assume that the person accompanying patients to appointments is their caregiver, but this person may not be the patient’s primary source of support or identify with the caregiver role. Importantly, caregivers who are minors are especially likely to be missed.

Once caregivers are identified, there remains the significant challenge of meeting their educational, psychosocial, financial, and wellness needs (21). Indeed, a foundational challenge to CARE Act implementation is resource and infrastructure limitations—namely, a limited number of available healthcare professionals with the time and capacity to carry out the mandate of the CARE Act. In the absence of hiring additional staff, identifying a staff member to serve as the point person for caregiver instruction may help to ensure that CARE Act procedures are more consistently implemented. Moreover, there are a limited number of dedicated psychosocial service programs for family caregivers housed within hospital systems (27,31), and even when programs are available, wait times are a barrier to care. Long wait times from referral until initial appointment (e.g., a month or more) are the norm for physical therapy services for caregivers who need to improve their own function to assist them in caring for patients at home, resulting in poorer long-term outcomes (32). Wait times for psychosocial support services are even more protracted, resulting in lack of timely counseling services for caregivers (33). As such, in addition to meeting the urgent need for dedicated staff members to expand our capacity to address caregivers’ unmet needs, hospital systems will need to maintain a comprehensive list of community-based resources available to caregivers in need if wait times are long.

The net result of these challenges is a fundamental lack of change in care delivery processes, despite CARE Act legislation. While some hospitals have added new fields in the electronic health record for documenting designated family caregivers, in a multisite study of CARE Act implementation, staff exhibited low awareness of the new requirements; even among those who were aware of the CARE Act, there was little change in care delivery (34). Further, some nurses noted that the family caregiver designation was not easily visible or accessible in the health record, hindering their ability to ensure that discharge instruction or other critical communication was provided to the appropriate person. Staff interviewed also noted the challenges of coordinating with caregivers’ schedules to ensure caregivers are present when staff are available to provide training, impeding compliance with the law (34).

Conclusions

For decades, the U.S. has been moving away from facility-based care, in response to bottom-up preferences of patients and top-down pressures of costs, workforce reduction, and technology (35). More than in countries with socialized health systems that tend to offer robust paid family leave plans and other job protections, the U.S. is continuing to shift profound caregiving responsibilities and cost burden to families. In this setting, addressing the needs of the U.S. family “careforce” is urgent. From an ethical perspective, not identifying, engaging, and supporting family caregivers risks causing harm not only to caregivers, but also to patients and our healthcare system more broadly. Without support from caregivers, patients are more likely to experience adverse health events and rehospitalization, resulting in greater burden to the healthcare system and increased costs. While policy makers, healthcare professionals, and payers are recognizing the enormous value of family caregivers, as well as their profound unmet needs (5,12), strategies and infrastructure are needed to address caregivers’ needs. The passage of the CARE Act and adoption of the 2022 National Strategy for Family Caregivers are crucial steps, but they are just starting points. Efforts to capitalize on the CARE Act as an opportunity to screen caregivers for distress and unmet needs and triage them to appropriate support will address the poor outcomes widely documented among caregivers. Such efforts will require widespread and committed prioritization and implementation by healthcare staff and commitment from hospital systems to expand staffing so that adequate support is available for caregivers. Until such changes are made, the intended aims of the CARE Act and additional policies aimed at supporting family caregivers will remain unrealized.

Acknowledgments

The authors are grateful to Rebecca Gebert who assisted with the preparation of this manuscript.

Footnote

Peer Review File: Available at https://amj.amegroups.com/article/view/10.21037/amj-24-49/prf

Funding: This project was supported, in part, by the National Institutes of Health (No. P30CA008748; PI Vickers).

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://amj.amegroups.com/article/view/10.21037/amj-24-49/coif). A.J.A. received support from Blue Note Therapeutics and Beigene. G.C. received 30% salary support through Betty Irene Moore Fellowship for Nurse Leaders and Innovators, paid to Duquesne University School of Nursing from Gordon and Betty Moore Foundation and 15% salary support for the National Center on Family Support at University of Pittsburgh from National Institute on Disability, Independent Living, and Rehabilitation Research. She is the national President-Elect and for 3 years prior was the Secretary-Treasurer of Association of Rehabilitation Nurses and the Guidelines Development Committee and Quality Coach for the Quality Training Program of American Society of Clinical Oncology. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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