We should stop making hospitalization an exercise in loneliness because of COVID-19
Gabe: My wife and I, both physicians, recently had a personal experience with the draconian hospital visitation policies brought about by COVID-19. It was eye-opening.
I am a pulmonary and critical care physician and my wife, Sarah, is a pediatrician. As the novel coronavirus was bearing down on us last winter, Sarah was diagnosed with breast cancer. The world turned sideways on us as we tried to navigate cancer treatment while trying to avoid the virus.
The following was written collaboratively by Sarah and I regarding a recent experience that made us realize the effect visitation policies have on patients, their family members, and the nursing staff.
We think that visitation policies should allow for reasonable family visitation, even during COVID. To us, the benefits far outweigh the risks.
Sarah: In early January, 2021, I had reconstructive surgery to finish up a long year of cancer treatment. This was a big one and required a three-day inpatient stay, with much of that time on complete bed rest.
The hospital did not allow any visitors with the exception of the immediate post-op period; Gabe could see me for an hour after surgery. Then I was on my own.
I have spent a year getting treatment on my own; every outpatient visit, every discussion with my surgeon and oncologist, chemotherapy infusions and pre-op visits, all of it. I was tired of doing this alone.
I woke up from surgery disoriented with numbness in my left hand and everything hurt. I developed a fever. Was this normal?
Normally I would rely on Gabe for this stuff. Gabe would ask. Gabe would be there to hold my hand and help reassure me. He knows my demeanor, when I complain and when I tend to shut down, what the nuances of my behavior are. He can interpret my actions to the care team and be my advocate. But COVID changed all that. I would be on my own.
Gabe: I spent 10 hours in the waiting room during Sarah’s surgery alone, trying not to think about things while watching Ted Lasso.
Finally they called me back to see Sarah as she was getting settled into her room. I spent the time arranging things- plugging in her phone so that she could reach it, adjusting pillows, discussing her expected course, and helping to get her settled in.
It was a lot, but something I enjoyed doing because it helped me to participate in a way that I felt helped communicate my care and support. It was important for me to be there.
10 pm came and I had to leave. Leaving her there was awful. I felt helpless. Her nurse did a terrific job, but she could have had Mother Teresa as a 1:1 nurse and it would have been miserable leaving that night.
Sarah: When Gabe left I remember doing a lot of self-talk, telling myself all would be fine and I could do this. But it was a long four days.
The nurses and staff did lots of things for me I normally would have asked Gabe for: adjusting pillows, getting me to the bathroom, and walking the unit with me. But there wasn’t always someone immediately available and I didn’t alway ask because I didn’t want to inconvenience the staff.
I wasn’t able to move my arms to reach above my shoulders, so I couldn’t get to the bed alarm or reach the nurse call button if it was placed along the pillows by my head. I struggled a lot more than I would have with a trusted love one at the bedside. Honestly, I took risks with mobility that I normally wouldn’t have.
The low point for me was the third night. I had a complete meltdown. Everything hurt and I was exhausted. I needed my husband. I needed to hold his hand and lean my head against his shoulder and hear from him that everything was going to be ok. The nurse that night was amazing, she did everything right. She sat down and talked to me, reassuring me. But she wasn’t my husband. I felt alone and isolated.
Gabe: I spent the days at home with our four kids trying to keep my mind occupied with laundry and meals and getting everyone to where they had to be on time. This was not easy.
Sarah and I would text and call throughout the day and she would update me often. But Facetime is no replacement for being there to help.
Sarah’s third night meltdown was not something I heard about until the next day. I slept with the phone beside the bed, but of course she did not want to disturb me. I think it would have helped her to hear my voice, but I know it would have rattled me and worsened my feelings of helplessness. But I would have rather she called anyhow.
Sarah: My discharge instructions were reviewed only with me (4 days post-op, drugged up and exhausted). I had to learn how to inject myself with a blood thinner every day. Thankfully we’ve done drain care before. And I think we did pretty well following the instructions. But damn.
A loved one at the bedside provides mental respite in addition to physical support. When Gabe is there, I can let my brain rest and allow him to listen, take notes, ask questions, and figure out logistics. Without him there, I had to concentrate HARD to make sure I understood. This level of mental effort takes away from the energy I can spend on just healing and resting.
I am not much of a cryer, but I sobbed with relief when they wheeled me out to the car to meet Gabe. I’ve never been so happy to see him.
Let me emphasize that my care was PHENOMENAL. There was not a need I expected from the hospital staff that wasn’t met.
But the hospital staff cannot also be my spouse, my emotional support, and my mental support.
We made it through this and I am recovering as expected. But it made us reflect on the effect not allowing ANY loved ones into the hospital has on all parties involved: patients, loved ones, bedside providers, and physicians.
Gabe: As an ICU physician, I thought I knew how hard these visitation policies are on families. I had no idea. Not sharing that lived experience is indescribable. I was without an emotional anchor for the effect the experience had on Sarah.
And Sarah was able to participate in her care. I can’t imagine the strain on the loved ones of a critically ill patient who can’t self-advocate. I see the effects of this in the ICU and it is distressing. Now, understanding it from the point of view of a family member, it is unconscionable. I feel bad it took this experience for me to see how horrible it is.
It is also hard on physicians and nurses. Loved ones at the bedside notice subtle needs and communicate important details to the care team. This is an important part of inpatient medicine that I miss greatly.
This is replaced very poorly by a phone call. It is impossible to use words to describe the visceral understanding of being present for a loved one’s illness journey.
Sarah: I am not a nurse or a bedside care aid, but I saw the effect this had on them. Things that families would normally help with- adjusting my pillows, giving sips of water, providing comfort- fell to them. At a time when they are already stretched thin as hospitals are bursting at the seams.
I realize these policies started as an effort to keep everyone safe. But knowing what we know now, I don’t see how these policies benefit anyone- not patients, not family members, not physicians, not nurses. There is little data that these policies help curb COVID disease or keep it from spreading to others in hospitals.
A few days after I was discharged, our hospital system changed the visitation policy to allow for a single visitor for each non-COVID patient, which is a welcome change.
Gabe: They still don’t allow visitors for patients with COVID-19, and I am not sure this is the right policy- these tend to be the sickest of the sick in the ICU, and it leaves families to struggle at home with all of the issues I wrestled with.
At this point in the pandemic we know how to be around patients with COVID-19 and reduce risk. I know it is controversial, but I feel strongly that patients with severe COVID disease, for whom ICU stays may be their last days, should be allowed visitors. Hospitals should provide personal protective equipment and allow family to sign a risk waiver to be there to provide comfort, care and company.
COVID-19 has changed a lot about how we care for patients in the hospital. For us, this experience emphasized the immeasurable benefit of allowing loved ones to participate in hospital care.
At this point in the pandemic, we should allow family members, with precautions, at the bedside.
UPDATE 1/27/2022: Visitation policies at our hospitals have been loosened, and even COVID patients can now have a visitor for a very short period of time each day. But we continue to be very restrictive with families at the time of death, allowing only a few family members to see dying patients. At this point, especially for patients who are critically ill and dying, we should allow families the freedom to don PPE and provide comfort as they would like. I understand the risks, but I don’t think the benefit outweighs the burdens on families. I think most family members would agree with this.
