Alone and Confused: The Effects of Visitor Restrictions on Older Patients and Families

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It’s happening in hospitals across the world. Visitor restriction policies due to COVID-19 mean hospital patients are feeling increasingly isolated and alone with no family or friends at their bedside. For older patients with dementia, delirium, and cognitive impairment, the restriction of visitors is particularly distressing. And worse, for those critically ill and near the end of life, the idea of dying alone is simply so wrenching it is hard for us to accept as reality.

We must not turn away when older patients who are more vulnerable to complications from COVID-19 need the health care system now more than ever. We must find ways to attend to both virus-related risk and mental health and well-being. Mary Beth Kingston, chief nurse officer of Advocate Aurora Health, an integrated health system serving Illinois and Wisconsin, explained that “balancing infection risk with compassionate care requires deep exploration of the many facets of a restriction policy—all having a profound impact on patients, families and their providers.”

In other words, the issue requires all of our attention and energies.

The Care Conundrum
Visitor restriction policies have a worthy purpose critical to the nation’s health and safety—slowing the spread of COVID-19. In most hospitals, full restrictions mean visitors are not allowed in inpatient, outpatient, or emergency department areas, with exceptions for children, laboring mothers, and patients receiving end-of-life care. With COVID-19 cases now surging across southern and western states, many hospitals are seeing daily COVID-19 hospital admissions grow. “No visitor” policies, once eased, are now being reinstated in COVID-19 hotspots.

Some clinicians point out that restricting visitors feels counter to the principles of compassionate care normally championed by hospital leaders, clinicians, and staff. Dr. Kevin Biese, co-director of the Division of Geriatric Emergency Medicine at the University of North Carolina at Chapel Hill School of Medicine, argues that we need to regard family caregivers as being more than visitors; they are members of the care team, regardless of patient age. Whether the family member is a parent trying to support a child or an adult child trying to support a parent, he or she is an essential care partner who should not be excluded from the bedside.

Complications for Clinical Staff
Restricting visitors is not only an emotional hardship for patients and families. The absence of a family member or friend at the bedside is felt by clinical staff as well, sometimes getting in the way of their ability to deliver care. Providers report that, starting with hospital admission, they are experiencing critical gaps in information gathering—an area where family caregivers were once invaluable before the advent of visitor restrictions. Clinicians are stretched to triage patients and accurately assess their symptoms, pain levels, and mental health status without communication from a family caregiver.

Providers are further challenged at the time of patient discharge, when they have yet to establish the critical partnership with a family caregiver, as they work to ensure at-home care will be both appropriate and thorough. Research shows that 20 million family caregivers are already performing complex medical/nursing tasks at home with very little guidance—a problem only exacerbated by COVID-19 restrictions. Lastly, language barriers can be exacerbated. Without the presence of a family caregiver to offer quick translation or context, the clinician’s ability to address patient issues is often slowed and inhibited.

Those Most in Need of a Family Caregivers’ Presence
Then there’s the issue of delirium. A common and often unrecognized condition more often present in patients over age 65 diagnosed with Alzheimer’s or dementia, delirium involves severe confusion—typically caused by overmedication, lack of sleep, uncontrolled pain, or insufficient food and drink. New research reveals one in three caregivers are caring for a loved one with Alzheimer’s or dementia in the U.S.

The presence of a family member at the hospital bedside for those patients most at risk of delirium has proven to reduce delirium and functional decline. A recent AARP report outlines the costs of delirium. Patients who experience delirium in the hospital typically are sicker and end up extending their hospital stay. After discharge they typically need long-term care at a skilled nursing facility—all of this placing unnecessary burden on our already taxed health care system during the COVID-19 pandemic.

“Being in the hospital can bring out behavioral and psychiatric symptoms of dementia like fear and anxiety for older patients with cognitive impairment and lead to agitation on a normal day,” explained Maura Kennedy, division chief of geriatric emergency medicine at Massachusetts General Hospital. “During the pandemic, these issues are exacerbated especially when a family caregiver is absent.”

Dr. Kennedy recalled a patient with dementia who did not speak English who came to the emergency department in respiratory distress. Her care team struggled to decipher whether her breathing difficulties were related to COVID-19 or anxiety from the emergency department environment. After the patient was able to talk to a family caregiver by telephone the patient’s breathing improved.

Many hospitals have nimbly adapted, implementing new policies and practices to work around the negative effects of visitor restrictions. Family caregivers are brought into discussions with providers by telephone or iPad for video conferencing. The American Geriatrics Society’s Hospital Elder Life Program offers resources for providers to help older adults maintain cognitive and physical functioning and reduce delirium.

At the core of the Hospital Elder Life Program is a team of volunteers trained to provide daily activities to patients enrolled in the program. Activities include sharing meals, walking with patients, discussing current events, reading to patients, or playing games. Each patient has a customized activity plan developed by an Elder Life Specialist and delivered a few times a day by volunteers. At Advocate Aurora Health many of these activities were conducted by the nurses upon recommendation of the Elder Life Specialists while visitor restrictions were in place.

Solutions for the Whole Person
Those are just some examples of how the system is beginning to respond. A one-size-fits-all approach to restrictions is problematic. Clinicians and hospital leaders need to overlay the whole person approach when developing visitation guidelines. Special consideration needs to be made for those who have unique advocacy needs where family caregivers are essential care partners. Dr. Biese underscored, “We must reframe how we think about family caregivers to our older patients with dementia, delirium and cognitive impairment.”

When hospital leaders thoroughly assess the consequence of visitor restrictions on these older adults and their clinicians, the answer is clear. With thoughtful consideration, hospital leaders must craft visitor policies that support the emotional and physical health of older patients—particularly those with dementia, delirium and cognitive decline—and still offer a safe environment of care for everyone. In an upcoming post, we’ll look at some solutions that are emerging around the country.

This is the first post in a three-part blog series for health care leaders focused on the impact of hospital visitation policies on families and older patients during COVID-19.

The next post will feature practical solutions concerning this issue from hospital administrators and clinical leaders from across the country, including virtual and in-person practices to better support older adults with delirium, dementia, and developmental disabilities. The third and final post will address the implementation process, bringing hospital visitation policy change to scale, and implications at the state and system level.

AARP is soon to launch a larger initiative exploring trends across health care systems all focused on how to support family caregivers in getting more guidance and help from the hospital before the patient is discharged. The “Supporting Family Caregivers Providing Complex Care” series aims to share insights and promising practices from health care systems that are implementing the Caregiver Advise, Record, Enable (CARE) Act in support of family caregivers.