Caring for the Caregivers: A Look at Improving Care After Discharge

By Matt Phillion

An estimated 47.9 million adults—more than 19% of the population—provide informal care for an adult in their lives. What goes on outside of the hospital or care facility is no small ask, either: Two CDC surveys have found that 40% of adult caregivers report symptoms of anxiety or depression, and 10% report suicidal ideation.

In short, these caregivers need help once their loved ones leave the healthcare facility, especially as the COVID-19 pandemic worsens isolation and other barriers to health and success.

“One of the most important things I’ve always believed is that the patient belongs to the family, not to the system or plan,” says Claudia Fine, LCSW, MPH, chief professional officer with eFamilyCare. “And the family needs to be empowered to maximize their ability to ensure that the patient is as well as possible and has access to as many resources as they are entitled to and that they need.”

Over her years in the industry, Fine observes, care management has shifted its focus from supporting the patient and family care experience to helping providers and payers deliver the most optimal health outcomes in the most efficient, cost-effective ways possible.

“Patients with multiple complex medical problems as well as physical and cognitive functional deficits are often not able to follow through on what the recommended treatment plans are once they are discharged from the hospital,” Fine says. Many also have limited access to social resources that are critical to their health and well-being.

The past 18 months, Fine notes, have shone a spotlight on the long-standing problems caregivers have faced when managing care for patients in the community.

“Access to resources, that’s not new, but what is new is the resources are fewer and compromised,” she says. “Caregivers think twice about allowing their loved ones to be transferred to an inpatient rehabilitation facility or a nursing home.”

COVID-19 has made it more difficult to bring assistance into the home, so much of the hands-on care for patients falls on untrained family or friends. To make matters worse, economic disparity means those with the least resources during the pandemic are often suffering the most.

“They have to work and have to leave their loved ones at home, and don’t have the support they need,” says Fine. “We’re hearing stories of 12-year-old kids taking care of 80-year-old disabled grandparents while their parents are at work at the hospital.” It’s an eye-opening experience for the industry.

“We’re not going to change healthcare overnight,” says Fine. “Where we stand now is we have an acute care system, where the job of healthcare is to make people better and send them home as quickly as possible. It’s expensive to get people better, and you can’t have someone convalescing in an acute care setting.”

What happens when they leave

The transition of care, and what happens after, will require a sea change.

“The healthcare system is going to have to get people out of the hospital as quickly as possible to control cost,” says Fine. “What happens when they leave? We have to invest in that. We have home care, but we invest very little in the training of paid home care. There are multiple, costly regulations, but the actual people who are being paid as home care workers are not well supported, supervised, or trained—they’re like the family members.”

State regulations vary regarding how often a licensed nurse must see a home care patient. Paraprofessional home care workers rarely conduct supervised visits more than once a month and often as infrequently as every six months. This often leaves complex cases in the hands of family members who don’t have the background to effectively provide for their loved one.

“Some of these patients are going home and the care falls onto, for example, their spouse. The patient is sent home and requires 24-hour care. They’re confused, they’re a fall risk, they’re on 16 medications,” says Fine. “But at the same time, the spouse is elderly with their own healthcare challenges.”

How does the industry support that spouse? Fine says existing, effective digital approaches can help control costs. She suggests offering a lifeline, something that enables the caregiver to receive asynchronous professional advice and support, someone to call when they are anxious or confused and need clarity.

“Telemedicine has been, for the most part, focused on the patient,” says Fine. “But the patient is often not able to manage the technology. They’re having enough difficulty staying alive and healthy.” Instead, technology needs to be directed at the caregiver who must assist with changes in status.

“It’s not just about monitoring the patient, but how we can help the caregiver respond when that monitoring identifies a problem,” says Fine.

This is not to say that plans don’t have strong care management programs, she says, but there is a limit to what can be done through reaching out to the patient or caregiver at a given time and day. “It’s better if the person can reach you when they need to,” says Fine.

There’s an app for that—or there should be

Younger caregivers are accustomed to electronic interactions, and organizations and plans can leverage this comfort to help them care for their family members. “As the population is aging, our caregivers are actually younger,” says Fine. “All of a sudden, we have caregivers who are Generation X and millennials.”

The old system of staying on hold until someone picks up just won’t work anymore. “We need to be nimble,” says Fine.

The industry also needs to recognize that ultimately, what happens in the home falls to these caregivers. “The healthcare system is not ready to be in the home yet because the home is not ready yet,” she says. “We have to make sure the home is ready by educating and supporting caregivers. You can say OK, we’re sending this person home instead of admitting them, but you don’t know what home looks like for them.”

That window into the home can be a digital connection between the caregiver and a dedicated person who will form a team with that caregiver. “The community and the hospitals are supposed to be connected, and they’re not,” says Fine.

It’s a philosophical change, and one that isn’t necessarily as far removed from the current culture as we might think. “I don’t think it’s about the extra cost,” says Fine. “I think plans see it that way because they look at it as adding something that doesn’t have an obvious return on investment. But that ROI might manifest in other ways.”

For example: A patient may not be following through on care, but with the right education and assistance from the caregiver, that patient can adhere to the health plan, maintain preventive care, stay on their meds, and show up for doctor visits—all of which leads to better measures, better CMS star ratings, and in the end, more money for the hospital.

Organizations have tried to maintain contact with the home, but a digital approach is “much cleaner, much more nimble, and certainly more cost-effective,” notes Fine. “You can be texting and managing caregivers frequently.”

There is evidence that the app approach works in other areas, from diet apps to exercise or meditation, Fine says. “There are a lot of examples of this,” she adds. “People need information, and these apps allow you to send a written message out and get a response.”

The responses must be tailored to the need, naturally, but having a touch point can lead to the right intervention in the right situation. “The most important thing is that health plans and providers need to acknowledge and act on the reality that people have to have a caregiver,” says Fine. “The caregiver is pivotal to the care team, and without that caregiver, you’ll fail.”

Better support for caregivers leads to better outcomes, and the industry needs to acknowledge this, Fine says.

“We have all these measures that we track, but we don’t recognize that a lot of these things can’t be done by the patient themselves,” she says. “Oversight, support, encouragement—even a ride to their doctor. Just getting them their medication. Those loved ones need to be included in the process.”

Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at