Daughter, student, caregiver, nurse: Unpaid caregivers are finding their place in the healthcare system

Jasmine Pearlman was close to earning her associate's degree in 2004 when her mother, Celeste, developed non-Hodgkins lymphoma. The diagnosis dramatically changed the 21-year-old Jasmine's life.

In between classes, she escorted her mother to the oncologist, to radiation and chemotherapy treatments, and to checkups with her primary-care physician. She oversaw her mother's 15-pill daily regimen and assumed household responsibilities such as paying bills, grocery shopping and cleaning the apartment they shared in the Bronx in New York City. Her grades suffered, and she struggled with depression. Somehow, she managed to graduate.

In 2005, Celeste's cancer went into remission, but her health continued to decline. “She was just worn out,” the younger Pearlman said. “She needed me to take over everything.” And Pearlman was happy to do it, even as others urged her to live a more independent life.

Today, the younger Pearlman remains the duo's breadwinner. She continues to manage Celeste's medical affairs, which in 2014 involved five procedures, including a partial amputation related to a chronic condition.

In addition to worrying about mixing up pills and dosages for her mother's daily medications, now down to eight, she learned largely on her own how to clean post-surgical wounds, prepare her mother's foot for a partial amputation, and inject her mother with blood thinners—in her stomach.

“When I did her shot, she screamed,” Pearlman recalled. “I'm a novice to these types of things.”

Pearlman's experience, not unusual for someone caring for a family member, is the kind that is bolstering growing calls in the U.S. for providers and policymakers to formally recognize home-based caregivers' vital role in healthcare and to integrate them into care-coordination processes. Researchers, policymakers and healthcare providers are slowly recognizing that with training and education, these caregivers will be better equipped to handle the increasingly complex medical tasks being asked of them, less likely to make mistakes or cause or suffer injuries, and more likely to detect potential problems, such as the early signs of an infection.

For anyone paying for healthcare, family caregivers have financial appeal, too. Home is a far less expensive place for a patient to recuperate than a nursing home or other long-term-care institution.

Initiatives are underway to provide caregivers with training and resources. But caregivers are far from being fully integrated into care processes. Experts say this oversight exacts a heavy and worsening toll on caregivers and hinders efforts to keep patients out of the hospital or nursing home.

“We're missing an opportunity to improve care,” said Jennifer Wolff, an associate professor at Johns Hopkins University in Baltimore who studies family caregiving. “The family member is often the person who's responsible for helping the most complex, most costly patients after they leave the four walls of the hospital.”

Pearlman eventually built her very career around her decadelong role as caregiver for her mother. She went on to earn a master's degree in public administration in 2008 and started Caregiving & You, a community-based organization. The group offers financial and material assistance, support groups, and practical advice. It has also produced TV, radio and internet programming geared to caregivers.

The sheer scope of the issue, however, leaves groups such as Caregiving & You confronting an ocean of need. There were an estimated 43.5 million unpaid caregivers in the U.S. in 2011, over 40% of whom took care of a family member 65 or older, according to a report published this year by the National Academies Press. Roughly 8.5 million of them looked after “high-need” older adults, who have at least three chronic diseases and a limited ability to handle daily tasks.

Traditionally, caregiving involved helping a person with basic daily activities. But the work has grown more demanding. According to the AARP, more than three-quarters of caregivers help loved ones to fill and manage medications that often require juggling varying dosages for pills that can appear identical. They perform routine nursing work such as draining catheters. Caregivers also help loved ones navigate the healthcare system.

Another factor pushing more care into home settings is the ongoing shift to reward healthcare providers for the quality of care, including patient satisfaction and outcomes, and not its quantity. Providers are increasingly steering patients toward settings where they will heal from surgeries and treatments in comfort, with as little risk as possible—and for the least amount of money.

Often, instead of hospitals or post-acute care institutions, that place is home. And someone, typically a family member who is unpaid and usually female, has to be there to help.

For these individuals, caregiving can require substantial financial sacrifice. Conservative estimates by the insurer MetLife suggest a female caregiver loses $324,044 in wages and Social Security benefits while the typical male caregiver loses $283,716 over the course of a working life.

The economic value of caregiving, which ranges from short-term post-acute assistance to long-term care, was estimated at $470 billion in 2013. In 2011, the Congressional Budget Office estimated, family members provided 55% of the value of long-term elderly care services, or $234 billion a year.

Despite the value of their work, these unpaid caregivers often lack the skills and support needed to properly care for their loved ones. And as the medical complexity of patient cases escalates, so do concerns about safety.

If family caregivers are trained, supported and educated, advocates say, dangerous mistakes such as giving the wrong medicine or overlooking a sign of infection could be prevented.

The National Academies report, issued prior to the November elections, called for the next administration to “develop and execute a National Family Caregiver Strategy that, administratively or through new federal legislation, explicitly and systematically addresses and supports the essential role of family caregivers to older adults.” It pointed out that by 2030, 72.8 million Americans will be 65 or older.

This demographic shift is one the healthcare system and long-term services are not prepared for—and caregivers tend to agree. “We're not treated as part of the team,” said Suzanne Mintz, president and co-founder of the National Family Caregivers Association. She has cared for her husband, who is wheelchair-bound, since his diagnosis of multiple sclerosis in 1974.

“If you think about it, who is spending the most time with the patient? It's the person who's caring for them, not their multiple doctors,” Mintz said. “What we see on a regular basis is very important to be able to share.”

Caregivers expressed concerns that without training, they would accidentally mix up medications, hurt themselves trying to lift a patient, or miss critical signs that something was wrong. “Untrained family members are automatically assumed to be able to do this kind of work,” said Carol Levine, director of the Families and Health Care Project for the not-for-profit United Hospital Fund in New York City.

Integrating them into healthcare system processes may hold the key to overcoming these problems. Research has shown that when caregivers are included in hospital discharge process, lengths of stay are shortened and readmissions decrease, according to the National Academies report.

Although online advice for caregivers abounds, this wealth of information may be excessive, experts say, because not all of it is useful or relevant. It is hard for caregivers to gauge the value before clicking.

The United Hospital Fund has Next Step in Care, a website with guides, checklists and videos—in four languages—covering care transitions. The AARP recently piloted an interactive website called CareConnection that provides caregivers with detailed answers to common questions.

“They search the web and get lost,” said Sanjay Khurana, vice president of caregiving products and services at AARP. “The solutions are not tailored well, or they're not taking caregiver needs into account.”

Caregivers are already vital to efforts to improve quality and patient safety, advocates say. But if they are formally recognized as such and integrated into the care-coordination process, they could be even more effective. Efforts to achieve this are underway in a variety of areas.

Some healthcare systems have experimented with integrating family caregivers into formal care processes. Meanwhile, 35 states have enacted versions of the AARP-drafted Caregiver Advise, Record, Enable (CARE) Act, most recently Ohio. Both chambers of its Republican-controlled Legislature voted unanimously to pass a version of the bill on Dec. 12.

Under the CARE Act, hospitals must record the caregiver's name on a patient's medical record if the patient requests, inform caregivers when that patient is discharged, and instruct caregivers in relevant medical tasks.

One avenue for integrating caregivers into the formal healthcare system is through electronic health records. In 2013, Geisinger Health System, an integrated system in central Pennsylvania, began looking into granting caregivers shared access to physicians' visit notes via the online portal OpenNotes.

Wolff, of Johns Hopkins, studied the effectiveness of this approach and found that caregivers reported better communication with providers after using it.

But even as experts laud these efforts, they emphasize just how much further supporting and integrating caregivers have to go. “People want to get paid,” Levine said. According to her, that issue is a priority for caregivers.

A handful of policy proposals—paid leave, Social Security credit and tax credits for caregiving—would mitigate the financial strain of caregiving, but only modestly, Levine said. At the federal level, these ideas remain proposals, not policies. (In some cases, family caregivers can seek caregiving-related tax credits by claiming relatives as dependents or by claiming medical expenses.)

In some states, Medicaid may pay family members to care for beneficiaries. Cash & Counseling, a grant program in 15 states, gives people with severe disabilities a budget to hire personal-care workers. Medicare does not pay for long-term, community-based care, and few homebound elderly have private long-term-care insurance policies, which vary in what they'll cover.

“Policies and practices have to become much more open about, 'Yes, we're depending on you, so we owe you something,' ” Levine said.