While necessary to help prevent the spread of COVID-19, an unintended side effect of barring hospital visitors during the pandemic has been families’ loss of learning how to care for ill or injured loved ones at their bedside.
In collaboration with a large team of researchers, doctors, nurses and health care providers, the University of Michigan’s Richard Gonzalez is studying how family caregivers are impacted by losing this bedside education. The study is called HEART.
Gonzalez is the center director of the Research Center for Group Dynamics at the Institute for Social Research and the Amos N. Tversky Professor of Psychology and Statistics and professor of marketing, and integrative systems and design.
Hospitals have restricted family members from visiting their loved ones. What effect does this have on patient outcomes?
Under normal circumstances, when families are allowed to be at the bedside, they are able to watch how different professional care staff come in, whether it’s nursing staff or respiratory care or the physician. They get to see how to help someone sit up in the bed, how to help them get up to go to the bathroom, and how to determine if they’re experiencing some discomfort.
Being by the bedside also allows the family to acclimatize to the patient’s changing condition, so when the patient comes home, the family can better manage care. When the patient comes home, if the family wasn’t at the bedside, they might not know which symptoms are serious, which ones are expected or which ones are signals that something else is going on.
There are also advocacy roles that families play when they’re at the bedside. They learn effective strategies to get help in the hospital, so when the patient comes home, the families can then apply that learning, whether it’s on a web-based health care portal or on a phone call.
The pandemic has also changed the discharge process. There used to be an elaborate discharge procedure where the family as well as the patient would sit down with the discharge nurse. These discussions might last an hour and a half, and during these discussions, patients and caregivers are given all kinds of information and the ability to ask questions. Now under COVID, these conversations have been altered, in some cases, dramatically. For some patients, this might mean receiving one sheet of paper with a phone number to call if they have any questions. The pandemic has undermined the traditional discharge process. Without the right resources, patients might be more likely to end up back in the hospital.
Can you talk about how COVID readmissions might affect the health care system?
Research shows that 40% of people who’ve been on a ventilator in ICU-for any reason-will end up back in the ICU within 30 to 90 days, and 60% will end up back within a year. This is in the best-case scenario in which patients are getting the assistive care they need, and getting home visits from health care professionals as well as being able to meet with the primary care physicians. Now under COVID, they’re not going to get assistive care and aren’t getting the same frequency of visits with professional staff-or they’re having to use telemedicine instead of face-to-face visits.
If 40%-60% of COVID patients return to the hospital, we worry that these readmissions will coincide with a second wave of COVID.
How is caring for a COVID patient at home different than caring for family members with different kinds of illness?
If you’re caring for someone who was hospitalized for a broken hip, you don’t need to worry about contracting the condition. But for COVID family caregivers, there is anxiety around contracting COVID yourself. You’re supposed to be giving care but you’re also putting yourself at risk, as well as other people in the household. COVID patients and their caregivers also report facing a surprising amount of stigma-which means they are hesitant to disclose their condition to receive the care or help they need.
What particular challenges do health care systems face with COVID?
COVID seems to behave very differently than any other disease. If you look at graphs of mortality for diseases such as measles, smallpox or tuberculosis, there’s a rapid rise that looks exponential. Then, it decreases at about the same rate that it increased. These diseases tend to have that kind of symmetric curve. You either die within five days or you recover. But COVID shows a different pattern.
COVID shows the characteristic rise and peak of deaths, but then it has a more gradual decline. One reason may be the way COVID affects people. With COVID, you could be in the ICU for five weeks on a ventilator, continue to experience repercussions after leaving the hospital and die three months later. COVID can be a very slow killer.
The way this disease behaves is different and none of our existing health care delivery models are set up for it. Right now, our health care apparatus is centered around the idea that patients will recover and be on a specific curve of improvement. And we’re just not set up for infectious diseases that linger for months, with a roller coaster of improvement and decline.