Bioethics Forum Essay
I Was Never “Just” a Visitor
Caregivers are not visitors. This powerful statement is the title of a recent editorial in the Journal of the American College of Emergency Physicians that commented on a study of hospital and emergency department visitor restrictions during the pandemic and their impact on patients with cognitive and physical impairments and those receiving end-of-life care. Using a nationally representative random sample of 352 hospitals and emergency departments during the first wave of the pandemic, the study showed that 93% of hospitals had hospital-wide visitor policies and 47% had emergency department-specific policies. Only about one-third of these policies made exceptions for patients with cognitive and physical impairments, and 58% for those receiving end-of-life care. These results underscore a painful reality: visitor restriction policies adopted to minimize Covid-19 exposure undermined care for many of our most vulnerable patients by excluding their caregivers.
Like caregivers who have received support through the Caregivers Clinic at Memorial Sloan Kettering Cancer Center, a program I began in 2011, and like the 53 million American caregivers in the United States today, I played a key role on my dad’s treatment team.
From 2011 to 2019, I spent approximately 321 days by my dad’s side in emergency departments and hospitals, serving as his eyes, ears, and voice while he lay on stretchers, often unable to communicate or advocate for himself. My dad had Lewy body dementia, a progressive neurodegenerative disease that can lead to fluctuations in consciousness. For him, these fluctuations meant visual and auditory hallucinations that were disturbing and often accompanied by life-threatening changes, like sudden drops in blood pressure or temperature. One moment we would be discussing a piece of classical music and the next he would be unable to focus, distracted by a false perception of three men standing by his bed about to attack.
His Lewy body dementia was diagnosed after an antipsychotic medication used to treat delirium put him into a coma. When he emerged, he was a bedbound, deconditioned, frail version of the dad I knew, reliant on others for help with all activities of daily living. He eventually recovered and we got his disease under control to the point that he could enjoy days, weeks, and even months without significant impairment, but Lewy body dementia meant additional neurological changes that made him susceptible to infections requiring hospitalization.
On most occasions when we arrived at the emergency department, he was unable to communicate with the health care team without me by his side. In addition to being his surrogate communicator and decision-maker, I was also his most available aide, assisting him with eating and drinking and helping him to turn from one side of the stretcher to another to prevent bedsores. I remained on high alert for adverse events, urging staff to change diapers to prevent infections, consulting about drug side effects I had witnessed firsthand, and, once, identifying the signs of an oncoming seizure and helping him to receive timely intervention. And, undoubtedly, I provided emotional support. I was his lifeline.
Had I not been there, the health care team would have likely relied on age-related assumptions to determine what care was appropriate. Without me by his side to share his health history and—perhaps more importantly—convey who my dad was in terms of his drive for life and goals for whatever time he had remaining, there was no way for anyone to know him, let alone provide him with person-centered, value-driven care. My absence would have meant the possibility of immediate and sustained assaults on his dignity. In fact, had I not been there, I’m certain he would have died in 2011, and likely alone.
Since long before the pandemic, emergency departments have been congested settings with constantly changing shifts of doctors and nurses. Depending on when patients arrive and the nature of their ailments, they can be seen by upwards of five rounding teams. Just one handoff between the day and night teams poses a risk for miscommunication and mistakes. It was a regular occurrence during shift changes for me to correct potentially dangerous errors to my dad’s medication list. My presence promoted a continuity of care that was otherwise missing and allowed for more rapid triaging and transition out of the emergency department. In effect, as my dad’s caregiver I compensated for many of the limitations of the emergency department. I would spend hours standing by his stretcher, fearful to leave for the bathroom or food. I knew that missing a rounding team’s visit could delay his care, possibly even by days. And I wasn’t alone. Throughout the emergency department were exhausted and anxious caregivers, striving to do exactly what I was doing. Back then I thought that we should be given a badge, something to identify us as caregivers. Instead, we were often overlooked.
The Covid-19 pandemic has highlighted a national caregiving crisis that has existed for decades. Caregivers shoulder tremendous responsibilities, frequently without formal training and support, and at the expense of their own physical and psychological well-being. The pandemic presents an opportunity to learn and take concrete steps to address caregivers’ needs. Not only must we differentiate caregivers from visitors, but we require an infrastructure that supports caregivers, in emergency departments and hospitals and at home.
The only regulation to mandate routine identification of caregivers is the CARE (Caregiver Advise Record Enable) Act, which requires hospitals to document caregiver information and provide training to facilitate care of patients upon discharge. The CARE Act is a start, but more is needed. Let’s give caregivers ID cards that allow easy entry in and out of emergency departments and hospitals; let’s give them pagers so that they can be notified when the rounding team is en route to the bedside. My colleagues and I have suggested that caregivers should receive their own medical record, a step that would facilitate communication, data collection, and the provision of necessary education and support. Many actions are required to address our caregiving crisis, including implementing an urgently needed national paid family and medical leave plan that would prevent caregivers from choosing between caregiving and work. Let’s take actionable steps to acknowledge what caregivers truly are—an essential extension of the health care team.
My dad died in February 2019 in an ICU. During lockdown, through continuing intense grief, I imagined being separated from him, like many of my patients had been from their loved ones. I thought about how helpless he would have been without me by his side, and what a gift it was that I was there, with my hand holding his and my lips to his cheek, as he took his last breath. I was never “just” a visitor.
Allison J. Applebaum, PhD, (@DocApplebaum) is director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center and author of a forthcoming book on caregiving to be published by Simon Element, a division of Simon & Schuster.