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It is that feeling that hits you, getting you right at the pit of your stomach to make it roll and then clench. It is the news that leads to the feeling that causes your body to chill, nausea following close behind. It started when I looked down at my cell phone and the text my father just sent me. As I read the 2 simple, blunt sentences, the feeling hit me with a force I did not expect.
“Your mother is in the ICU [intensive care unit]. She had bleeding in her brain.”
As an internal medicine physician who works in both outpatient and hospital settings, I feel fairly comfortable with many complex and serious medical illnesses, both acute and chronic. After practicing medicine for more than 15 years, there is not much that shocks me. But, that text? That text sent my medical brain down an alarming pathway of differentials, treatments, and potential prognoses, most of them not good. In reality, I am not sure much can prepare you for the news of a loved one with an acute serious medical illness. After some immediate telephone calls with family and the hospital, I quickly learned the facts. My mother had experienced an acute subarachnoid hemorrhage for reasons as of yet unknown. The hemorrhage was moderate in size and my mother was intubated, admitted to the ICU for monitoring.
When my father found my mother incoherent in their bathroom, he called 911 and she was taken to a hospital nearest to their home in the suburbs of Chicago, Illinois. On the day her blood vessel spurted her precious blood into her brain, I was in a state almost 1000 miles away. Understandably but also unfortunately, the coronavirus disease 2019 (COVID-19) pandemic had forced that hospital’s hand, like so many across the country, to restrict any and all visitors from entering the building for fear an asymptomatic friend or family member would unknowingly infect staff members or patients. The decision not to immediately hop on a plane or get in my car headed to Chicago was gut wrenching. Everything about the decision felt horribly wrong, but I also knew that I would not be able to do anything if I went to Chicago. After all, the hospital was not my hospital, and I would be denied entrance, just as any other family member. As a nonpatient, I would be unwelcome there. A trespasser. All of a sudden, the most recent petty argument I had had with my mother flew to our past, and ahead of us was simply a very sick woman and her helpless daughter, who was unable to provide any aid, stuck at the mercy of an infectious disease pandemic.
So, I stayed home and relied on the physicians, nurse practitioners, and nurses to provide us with updates and information. Instead of being on the floors and intimately knowing reassuring details such as blood pressures and hemoglobin and sodium levels, I was cast in the role of an outsider as I anxiously waited by the telephone, hoping and placing my trust in health care professionals I did not know to care for my mother.
And I waited for them to call me.
And I waited.
And sometimes I waited some more.
No, the hospital had not implemented tablets so family could video chat with the health care professionals or patients temporarily housed in their solitary beds. Nor did the hospital seem to have a communication policy or expectation to keep the family updated on a daily basis since no visitors were allowed in the building. No, they could not page the clinicians directly, but I was informed the nurse could leave a message for the clinician who would then not call me back. And, finally no, a change in clinical status did not necessarily warrant a call to the family to make them aware. I learned all of this as the days passed and I stayed home.
COVID-19 has completely changed our world. It tore through our society, uninvited and like a massive wildfire, leading to an upside-down new reality of home schooling, telehealth visits, and a seemingly constant fear of developing fevers and coughs. The mask and shield I now wear to protect myself and my patients in the clinic and hospital are not the only shifts in medicine due to the deadly virus. Early in the pandemic and at the US Centers for Disease Control and Prevention’s urging, health care systems and hospitals recommended restricting visitors into their facilities to limit potential exposure to the virus.1 In the US, hospitals across the country had almost universally introduced some type of limited or no-visitor policy at some point this year. While these no-visitor policies absolutely make sense in a time of contagion, there are unfortunate and inadvertent but serious consequences that occurred as a result.
While my mother miraculously retained full neurologic function after the hemorrhage requiring only a short intubation period, her hospital course was rocky, with spikes of head pain so severe at times that she would revert back to her native language of Spanish, unable to think enough to form words or sentences in her adopted accented English. With no one at her bedside to advocate for her, her medical team made decisions about her care that implied they did not believe her degree of pain. Even after repeated telephone calls to her medical team from her physician daughter, she was denied any further evaluation or escalation of her pain medications. Rather, they felt she was doing well, improving even, perhaps falsely assuming that she was just an overly dramatic, elderly Hispanic woman who had trouble communicating in general. They did not know my mother so they could not realize that she previously could understand and speak fluent English and her inability to do so could be a sign of deterioration. They did not call her family so they were not getting that important piece of information from us. It came to a head the night she was transferred to the hospital’s inpatient rehabilitation floor, pronounced to be in good condition. Despite her crying and moaning throughout the night, her complaints were dismissed by the staff who had their hands full taking care of a busy unit. In the morning, she was found covered in her own vomit and obtunded. A computed tomography scan revealed an acute reaccumulation of her cerebrospinal fluid and hydrocephalus, requiring a new drain to be inserted to relieve the pressure that had built up.
“This is not enough. If this is our new reality, then we must do better,”2 argues Daniela J. Lamas, MD, of the difficulties in communication between health care professionals and families when there is a no-visitor policy in her opinion piece published in the New York Times in March 2020. Although COVID-19 has necessitated severe precautions in our health care institutions, Lamas has rightly recognized the potential for tragedy that comes along with the change in visitor policies. Now, uninvited and unwelcome, family members are left out, helpless, and unable to advocate for their loved ones.
They necessarily and desperately depend on the hospital and its staff to provide the vital and precious information of their loved ones’ well-being and hospital courses. When hospitals fail to communicate, not only are families left to scramble and put together stories on their own, but hospital staff miss valuable opportunities to learn more about their patients. The abrupt disruption of this 2-way communication has the potential of putting patients at risk and of causing increased stress and frustration for all. The families left out have now become yet another of the hidden and sometimes forgotten victims in this new COVID-19 life.
The summer lull and decline in COVID-19 hospitalizations in many US cities and towns allowed hospitals to relax the strict no-visitor policy that was so necessary in the spring. However, as our country now heads back into another frightening surge of COVID-19 cases, hospitals will very likely need to reinstate such policies for safety once again. With it comes an additional but incredibly important responsibility that will get heavily placed on the shoulders of already overworked staff. Health care workers will once again be asked to be the only delicate thread that can connect a sick patient to their frightened and desperate family members. And yet, this exact responsibility we all must don like our freshly laundered scrubs before we enter onto the COVID-19 ward is a task that fundamentally embodies the very ideal of what drove so many of us into the field of medicine in the first place. It asks of us to connect, to help, and to relieve pain.
“Your mother is back in the ICU.”
It was just 1 sentence this time, the text I received from my father 2 weeks after the first one. Upon reading it, my skin chilled, the nausea set in, and my stomach rolled and clenched yet again.
We have learned a lot over the last several months. This time, we must do better.
Corresponding Author: Elizabeth Cuevas, MD, Center for Inclusion Health, Allegheny Health Network, 1503 Abby Rose Ct, Pittsburgh, PA 15237 (email@example.com).
Published Online: March 1, 2021. doi:10.1001/jamaneurol.2021.0050
Conflict of Interest Disclosures: None reported.
Additional Contributions: I thank my parents for granting permission to publish this information.
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Cuevas E. No Visitors Allowed. JAMA Neurol. 2021;78(4):381–382. doi:10.1001/jamaneurol.2021.0050
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