I recently spoke with a woman whose husband contracted a serious, chronic illness that requires long-term use of a peripherally inserted central catheter (PICC) line.
As her husband’s primary caregiver, this woman is responsible for cleaning and flushing the PICC line three times a day. And while she knows how to carry out these functions, she nonetheless remains fearful of inadvertently introducing bacteria into the line and the consequences that could result.
For this woman, the issue is not simply a matter of not having received what, in her view, was adequate training, but also the anxiety she feels about potentially causing harm to her husband each time she carries out a skilled level of care that she believes would be better left to a qualified healthcare professional. She also expressed frustration with the often-conflicting information provided by her husband’s physicians, who cannot—or will not—communicate with each other, leaving her to coordinate his care.
This woman is not alone. Sadly, her experience—and that of millions of family caregivers like her—is all too common, especially at a time when so much focus is on “value-based care”—delivering quality care at lower cost.
Who Cares for the Caregivers?
Try Googling the word “caregiving.” Google doesn’t take you to a hospital website. It doesn’t take you to a health plan website. It doesn’t even take you to the Centers for Medicare & Medicaid Services (CMS) website. Instead, many of the search results direct you to sites for social services organizations, Alzheimer’s research, or associations for seniors, like AARP.
Virtually absent: services to address the needs of family caregivers, including expert advice on making clinical care decisions for their loved ones.
It’s true that chronically ill patients and their caregivers benefit from social services such as transportation and meal delivery. However, for the rising number of unpaid and untrained family caregivers, their most pressing need is for resources that strengthen the ability to make informed care decisions and improve quality of life—for their loved ones and themselves.
Consider that more seniors are aging at home or in their family members’ homes during the pandemic, especially as COVID-19 deaths in senior living facilities began to climb and facilities tightened visitor restrictions to avoid the spread of infection. Today, nearly 48 million people provided unpaid care for adults in 2020, up 16.6% since 2015, according to a recent report. About one in four provides care or support for more than one person.
As these numbers grow, there are signs that the pandemic has intensified stress on family caregivers:
– Nearly half of those who care for a parent say they receive less social support in their role than they did before COVID-19; 75% say navigating the healthcare system is more difficult, one recent study found.
– About 23 percent of caregivers say caregiving has made their own health worse, up from 17 percent in 2015.
To be sure, patients and their caregivers do get a modicum of assistance, usually at transition points from one level of care to another. At hospital discharge, a written discharge summary with instructions for what the patient needs to remain stable at home is provided. But there is rarely adequate time for discussion about possible barriers to carrying out these care recommendations or who to contact if there is confusion or a problem. At the doctor’s office, the patient receives a prescription with instructions to take two pills twice a day with water and not to eat tomatoes with that prescription. Perhaps the patient is counseled to be on “a low-salt diet,” but there is little discussion about how this may impact the patient’s current diet, which are better foods to eat and where to find them. The information provided is valuable, but most people do not fully comprehend new information the first time around. Nor do they comfortable asking questions or sharing their concerns—especially in time-limited, high-stress circumstances.
Add to this the fact that patients with multiple chronic illnesses see multiple doctors – all creating care plans and prescribing medications to address their specialized areas. The patient and caregiver go from one doctor to the next doctor, and the next doctor, until they lose track of who they’re supposed to see when, what to do or take next, when to address medical issues themselves and when to call which provider.
It is becoming abundantly clear that the healthcare establishment can and must do more to recognize and support—in tangible ways—the value that family caregivers bring to healthcare’s table.
Bad News, Good News
Sadly, there are reasons why it doesn’t. Among the most significant is the stress that has been placed on the healthcare system. The costs of providing care in general, much less home healthcare services, continue to skyrocket, particularly in this era of COVID-19. There continues to be overwhelming and seemingly never-ending competition for resources, posing serious challenges to our healthcare infrastructure.
The good news is that support for family caregivers appears to be growing among public and private healthcare payers. Thanks to the pandemic, for example, Medicare and most private insurance payers now cover telemedicine services, making it easier for patients and their caregivers to consult with their providers. In addition, President Biden’s $1.9 trillion COVID-19 emergency relief package includes $145 million in funding for the National Family Caregiver Support Program, under which Medicaid home and community-based services would allow low-income older adults and people with disabilities to receive care at home with their families instead of in a nursing home.
But as the saying goes, the devil is in the details, and details regarding which types of services will be covered to support care at home—and which will not—have yet to be revealed.
Our nation has a vital opportunity to unleash the potential of family caregivers to improve health outcomes. Research shows that when family caregivers have the guidance, education and resources to make informed care decisions, this reduces readmission rates by 25% over 90 days. Further, the right support eliminates unnecessary emergency department (ED) visits. At a time when hospitals and physicians are increasingly paid by insurers based on their ability to improve patient outcomes and reduce healthcare costs, family caregivers are a critical link in the move toward value-based care. Yet too often, their value is unexplored—and their needs aren’t being met.
More Can—and Must—Be Done
It is true that licensed nursing agencies are available to take much of the burden off family caregivers, but the cost of such services is beyond the reach of many of those who need it most. Additionally, given the current shortage of home care workers, trained aides are hard to come by. Moreover, in the current environment, patient home care providers primarily consist of attendants who can do little more than help patients use the bathroom, get dressed, and complete other basic tasks. For example, in the state of New York, home care attendant who work with a licensed homecare provider are not permitted to administer insulin or eye drops or even to cut a patient’s fingernails or toenails.
Think of the irony: It is OK for an otherwise unqualified family caregiver to clean and flush their loved one’s PICC line, but it is not OK for a home health aide from an outside agency to do so. How does that make sense?
Family Caregiver Support Is a Requirement, Not a Want
Patients and their family caregivers, by definition, are “weaker” than their providers. Both are completely dependent on their provider’s decisions and actions. They can rarely walk into their physician’s office with a sense of confidence that their expectations for high-quality, smoothly delivered care and treatment will be met. No wonder they struggle and often fail to carry out the care recommendations required to keep their loved ones safe.
A care adviser can help family caregivers understand and act on managing medications, evaluating care and treatment options, and other aspects of healthcare. The care adviser not only provides support to patients and caregivers but also can elevate the role of the caregiver and empower them to be an important part of the health care team. By incorporating family care advisers, healthcare providers and payers will experience the secondary gain of improving health outcomes and reducing the costs of caring for the elderly and other vulnerable populations.
Caregiving encompasses more than providing patients with transportation and meal delivery. It involves maintaining seniors’ health and ensuring the right care is provided in the right settings—efforts that avoid expensive ED visits and hospitalizations. But facilitating value-centered care for seniors in the home depends on recognizing family caregivers’ role in maintaining seniors’ health. It also demands that the healthcare establishment support these caregivers’ needs for real-time education, consultation, and resources so that they may improve seniors’ health outcomes and quality of life.
The time is long past due for the healthcare establishment to regard family caregiving support as a foundational aspect of value-based care, with benefits not only for patients but also the healthcare system as a whole.
About Claudia Fine
Claudia Fine is Chief Professional Officer at eFamilyCare, a digital platform to connect family caregivers of chronically ill loved ones with any time, anywhere access to experts. Ms. Fine, LCSW, MPH is a pioneer in the field of geriatric care management and has served in many industries and community leadership roles. She served as an Executive Vice President of SeniorBridge Family Companies and subsequently Chief of Professional Services at Human At Home after Humana’s acquisition of SeniorBridge in 2012.
Ms. Fine has worked in the field of eldercare for over 30 years and was a founding partner with the New York City-based Fine & Newcombe Associates, a pioneering firm in the private eldercare field that was acquired by SeniorBridge in 2000. She is the former President of the National Association of Professional Geriatric Care Managers. She is the recipient of the prestigious Hunter College School of Social Work Award for Outstanding Service to Social Work in Aging. Claudia obtained her BA at Brandeis University and her Master of Social Work at the Hunter College and Master of Public Health from Columbia University.