Abstract
Family caregivers are integral to patient care. However, a combination of systemic forces places enormous pressure on family caregivers, while simultaneously devaluing them. Recently, more public attention has been paid to caregivers’ importance, prevalence, and needs, generating supportive responses by government, employers, and the media. As of yet, there has not been a commensurate response by health care institutions. We identify four key challenges to building comprehensive cancer caregiver support and propose five necessary components for future programs that cancer centers and organizations can adopt. Comprehensive cancer caregiver support is attainable but national organizations need to lead the effort through standardization of guidelines and metrics for cancer centers.
Family caregivers supporting individuals with cancer are integral, but often invisible members of the care team. These caregivers manage patients’ clinical care needs, help coordinate care, emotionally support patients, improve patient-provider communication, and guide and ensure that patients’ medical decisions align with their values.1-3 Caregivers spend, on average, 33 hours/week caregiving, often while simultaneously fulfilling other work and childcare obligations.4,5 Unsurprisingly, nearly half of cancer caregivers experience significant anxiety and depression along with negative impacts to their financial and physical health (e.g., increased risk for cardiovascular disease), which ultimately can have spillover effects for patients’ physical and mental health.6-8 In cancer care, reliance on caregivers continues to grow as more treatments are delivered in the outpatient setting with monitoring at home, and decreasing mortality rates accompanied by increases in long-term treatment effects on patient functioning and well-being prolong the need for caregiving. Without adequate support for these cancer caregivers, their health and the health of the patients they care for are at risk.
Despite acknowledgment of cancer caregivers’ importance and unmet needs, resources to support them are not widely available. Recognition and support of all caregivers (e.g., paid caregivers, parents of children, caregivers for other serious illnesses) has gained national attention in the United States since the COVID-19 pandemic revealed critical shortages and insufficient supports for caregivers across care settings. 9 Buoyed by media attention, employers, policymakers, and legislators have taken notice. This attention has created the long-awaited momentum for activists to successfully champion solutions including childcare subsidies, employer- and state-based paid family medical leave, and legislation that increases monitoring and regulation of long-term care facilities.10-12
These efforts have likely provided some benefits to family caregivers of individuals with serious illnesses like cancer. However, caregivers also need programs focused on supporting their psychosocial, physical, and financial health as well as specific training to manage complex illnesses at home. 13 While these types of programs would be most at home within cancer clinics, where patients and caregivers spend much of their time, few clinics have the infrastructure to support caregivers and even fewer have comprehensive supportive care service lines. Most recently, Odom and colleagues attempted to measure the status of caregiving support programs across the United States, but only a quarter of all Commission on Cancer-accredited cancer centers responded to their survey. 14 Of those who responded, less than half had infrastructure or services for caregivers beyond redirecting them to external resources and information. We identify the following challenges to advancing comprehensive support programs for caregivers and suggest potential solutions.
Ongoing Challenges for Funding and Reimbursing Caregiver Support Services
A primary reason that caregiver programs are not widely available is the lack of reimbursement and thus funding for services provided to caregivers. Recent changes to Center for Medicare Services’ coding, however, now enable reimbursement for caregiver training services that aim to improve the patient’s ability to perform activities of daily living (ADLS) and instrumental ADLS. 15 This type of change is critical to incentivizing health care systems to provide caregiving services. Yet, these codes are limited to physical, occupational, and speech therapists and the potential reimbursement is relatively small. Expansion of existing reimbursement codes to other professionals (e.g., nurses and home health aides) who regularly engage with caregivers is also needed. In addition, we need to advocate for other reimbursement codes that not only expand the types of services that make caregivers better caregivers, but also directly benefit caregivers’ physical and mental health needs.
Minimal Dissemination of Evidence-Based Cancer Caregiver Interventions
Among caregiver support programs that are available in cancer clinics, only 8% of clinics reported that their program was evidence-based. 14 Dissemination issues rather than program scarcity contribute to the lack of proven programs: approximately 75 cancer caregiver interventions have been developed and tested over the past several decades. Most of these interventions have shown moderate efficacy in improving caregiver quality of life, anxiety, and depression. 16 While the National Cancer Institute’s Evidence-Based Cancer Control Programs (EBCCP) Database 17 is a key resource for disseminating evidence-based intervention, EBCCP only provides partial or third-party access to just six programs, and virtually no transparency on the cost of implementing these programs. Streamlined mechanisms are needed to support investigators to add their interventions to the EBCCP and to update existing interventions when new data or modifications are available.
Caregivers and Caregiver Support Programs Remain “Hidden”
Caregivers, long referred to as the “hidden patient,” 18 remain invisible due to lack of identification both by themselves and by medical teams and clinics. This invisibility extends to their support programs, creating an illogical and complex situation where a hidden patient must be connected to a hidden program. While the CARE Act mandate for systematic screening and identification of caregivers helps in the hospital setting, it does not apply to outpatient settings like cancer clinics. 19 Instead, efforts to implement caregiver documentation have varied significantly and primarily relied on grassroots efforts by independent actors. 17 We therefore not only need caregiver documentation, but established leadership and champions within cancer care systems and related clinics to lead these efforts and the strategic campaigns necessary to improve awareness of programs across clinics.
As the “hidden patient,” the responsibility of caregiver well-being is unassigned within cancer health care systems. Thus, providers must also play a role and need training to identify and direct caregivers to programs. Since providers are, necessarily, focused on patient outcomes and already have limited bandwidth, this training should be part of a larger goal to situate the caregiver as integral part of patient care. By emphasizing the caregiver as both an important care team member and part of the patient’s unit of care, providers could better understand the importance of assessing caregivers’ needs. We therefore recommend palliative care approaches that prioritize patient and caregiver as the unit of care and foundationally aim to improve collaboration and communication between health care teams and caregivers. Every touchpoint of communication with a caregiver is an opportunity to assess and address their needs.
No Standards for Caregiver Support Services
Although national organizations and offices like the American Society of Clinical Oncology, National Cancer Institute Office of Cancer Centers, and the Commission on Cancer provide guidelines and metrics to screen, assess, and provide care for various patient psychosocial needs, they are non-existent for parallel caregiver programs. Without quality metrics that outline what is expected and needed for comprehensive caregiver support, caregiving research and support will continue to be siloed. We believe that national organizations and offices are ideally positioned to create the necessary guidelines and metrics for excellence and urge incorporating the following goals from the 2022 National Strategy to Support Family Caregivers:
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• Advance Partnerships and engagement with family caregivers. • Strengthen services and support for family caregivers. • Expand data, research, and evidence-based practices to support family caregivers.
Reflecting on the challenges facing progress in caregiving support in cancer, we urge the following efforts: 1. Uptake of current reimbursement and advocacy to expand reimbursable services for caregivers including those that directly benefit caregivers’ wellbeing. 2. Simplified processes to help investigators add and update their interventions to the EBCCP and provide cost transparency. 3. Systematic identification of caregivers in electronic medical records in standardized locations 4. Development of clinic-level leadership positions and champions to create, implement, and maintain caregiver support programs along with strategies that make programs and caregivers visible cancer system-wide. 5. Implementation of provider trainings that emphasize the caregiver as both an important team member and unit of care. 6. Efforts by national cancer organizations and offices to develop guidelines and metrics for caregiver support programs to establish and ensure quality standards.
Comprehensive cancer caregiver support can only be achieved by changing the culture and expectations for supporting caregivers through multi-level collaborations to standardize data collection, creating funding pathways for caregiver support, increasing availability of evidence-based interventions, and most importantly, through prioritization of caregivers by cancer organizations across all levels of society.
Footnotes
Author Contributions
All authors (KRT, ATF, CK) contributed to the conceptualization, drafting, final approval of the submitted work
Declaration of Conflict of Interest
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Drs Kelly Tan and Charles Kamen have no conflicts of interest to declare. Dr Anny Fenton advises Mellie, a caregiver mobile app.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
