Hospitals need to offer caregivers more training

Millions of Americans are serving as caregivers for loved ones, and too many aren’t getting the preparation they need.

Many caregivers face difficult responsibilities after a family member has had a hospital stay or is dealing with a long-term illness. Susan Reinhard, senior vice president and director of the AARP Public Policy Institute, says caregivers aren’t getting as much help as they should.

“I was a visiting nurse a long time ago, and a visiting nurse does a lot of that training going into the home,” Reinhard tells Chief Healthcare Executive®. “But most people don't get a visiting nurse. And they need information. They need to actually perform the task.”

Nationwide, there are 40 million Americans serving as caregivers for loved ones. Half of those caregivers - 20 million people - are performing complex medical tasks with little training or guidance, AARP estimated in a 2019 report.

“Over 20 million people are doing pretty complicated things,” Reinhard says.

Caregivers aren’t just driving loved ones to doctor’s appointments or helping around the house. Four in five caregivers are helping their loved ones manage medications, AARP says.

Some caregivers are also performing wound care and managing medical equipment, including ventilators and feeding tube systems. Some caregivers have to prepare special diets.

In an interview with Chief Healthcare Executive®, Reinhard sheds more light on the challenges caregivers are facing, and how hospitals and health systems can provide more help.

(See part of our conversation in this video. The story continues below.)

‘You’re not a nurse’

Anyone who has had to care for a loved one with chronic illness knows how difficult it is. Many caregivers are working, and some say they aren’t getting the support or help they need from their employers, AARP found in a recent survey. Plus, some caregivers are also raising children.

Providers should realize that managing medication shouldn’t be taken for granted, especially for those who are taking a host of prescriptions, Reinhard says.

“That is not easy,” Reinhard says. “You have to know what they're for. You have to know whether they have food or they don't have food. Can they give it with this? How many hours apart? What if you missed one? Do I give two the next time? And most people are on multiple medications if they have complex care, so they're not just taking one pill or taking a lot of them. And they may have an injection to boot.”

When it comes to wound care, caregivers are more likely to get instruction than for medications, but some say they had no instruction, according to AARP. Reinhard says some may be getting guidance, but it was insufficient or they didn’t remember it. But whether they get no training or inadequate instruction, either way it’s a problem, she says.

Reinhard also stresses the importance of repetition in showing caregivers tasks, including the “teach back” approach.

“Have somebody say, ‘Do it, don’t just watch me. But let me watch you so that I can see if you know what you're doing and have confidence.’”

Caregivers need “emotional preparedness” for tasks such as wound care or other needs, Reinhard says. That goes beyond knowing the process but feeling comfortable, and knowing they can perform the task without hurting their loved one.

Clinicians need to remember that most caregivers haven’t had medical training. As someone who worked as a visiting nurse and taught caregivers, Reinhard always remembered that she was “shook” the first time she had to perform many tasks as a nurse, and she drew on that in training.

“Hopefully, we don't get so comfortable that we forget that this is not something that you would know how to do,” she says. “You're not a nurse or a physician or some other healthcare professional.”

As a nurse, she sought to reassure caregivers, but also encouraged them to speak up if they didn’t understand.

“I've learned over the years that a nurse or anyone who's teaching should not say it's going to be easy,” she says. “Not a good thing to say. And I used to think that was a good thing to say, ‘Oh, don't worry, it's going to be easy. You're going to be great at this.’ Because the family caregiver then feels they can't say anything.”

If family members are fumbling over a task that’s supposed to be easy, they are less likely to acknowledge a problem.

“You don't get taught this,” she says. “This isn't something that nursing schools and medical schools spend a lot of time on.”

Guidance for hospitals

While there remains plenty of room for improvement, hospitals and health systems are beginning to pay more attention to the needs of caregivers, Reinhard says.

More than 40 states have passed a version of the CARE Act, which requires hospitals to identify caregivers and help them understand the medical tasks they need to perform.

Of course, hospitals have financial incentive to ensure patients are ready for discharge and caregivers are equipped to help them. Hospitals face financial penalties from the federal government if they have higher readmission rates, and Reinhard says better instruction can help reduce the chances of a return trip to the hospital.

A University of Michigan study found some hospitals aren’t falling short in some areas in helping patients make the transition to home, including a lack of follow-up calls or unclear instructions if there are questions.

• Read more: Many hospital patients aren’t getting good instructions before being discharged

Better instruction for patients and caregivers “can cut down on readmissions, which is real money that affects a hospital's bottom line,” Reinhard says. Plus, she notes, that’s also a good way to improve patient satisfaction scores, which can also have a financial benefit.

Hospitals and health systems need to ask patients questions before sending the patient home. They need to make sure caregivers are available, first of all, and that they have a good idea of what they need to do, or if they are going to need more guidance.

“For too long hospitals and their employees have only thought about the care they're giving in the hospital,” Reinhard says.

Providers can also give patients and their caregivers good explanations on all of their prescriptions, with clear instructions on dosages.

Hospitals should also see if the patients and caregivers are facing any other challenges, including social factors affecting their health. Reinhard adds that doctors and nurses can also work to connect patients with social services for additional help.

Reinhard would like to see hospitals allow caregivers to record steps such as wound care, so they could have a reference for doing those tasks later. Some hospitals take that step routinely, but Reinhard says some hospital staff don’t feel comfortable being recorded.

“I think we ought to be moving more in that direction,” Reinhard says. (AARP offers a series of instructional videos for caregivers.)

Hospitals also need to make sure caregivers have the supplies they need for their loved ones.

Reinhard recounts a story involving a friend whose loved one was leaving the hospital with a complicated wound and needed regular changes of dressings. Her friend knew the procedure but wasn’t sure which specific dressings were needed for the wound, and she was amazed that offering an initial supply of dressings wasn’t part of the hospital’s routine.

Hospitals need to think about the needs of patients, and caregivers, as they recover at home.

“This person has a lot of needs when they leave here,” Reinhard says. And she adds that hospitals should ask, “How can I set you up for the best possible experience once you leave here?”