Over the past few months, I have been living two lives: one as a doctor in a neurology department, and the other as a family member caring for an aunt whom I can’t see because she is on a ventilator with COVID-19. On certain days, I have trouble keeping them apart.
Due to COVID-19, there are strict visitor-limitation policies in hospitals for the safety of patients and health care workers, even for those of us who aren’t treating coronavirus patients. What that means for doctors like me is that we try to update every family at least once per day over a phone call, rather than at the patient’s bedside. While the calls fill the void of information, they fail as an adequate substitute for in-person interactions.
And those calls don’t always fill that void: I have grown accustomed to dial tones, busy tones and the robotic voice that repeats, “The number you have reached is not available. Please try your call again.” I have learned to hate leaving voicemails. They feel fraught because we can’t provide any real information, so families don’t know why the doctor called and can’t have a dialogue.
But as a family member of someone in the hospital, I know that a voicemail is better than nothing; silence is thunderous when you cannot be together. It is hard to navigate being separated from our sick family members and one another, often struggling to understand what a doctor is telling us and sometimes missing those phone calls and updates that are our only source of information.
There was one time, recently, when my two identities came too close together. “Hi, Mrs. S.,” I said on the phone, “This is Dr. Budhu, calling from the neurology department. I want to share with you an update about your husband. His condition remains stable, but we’ve been having some trouble with him at night. Unfortunately, he gets quite agitated and we think part of this is related to his strokes. It could also be sundowning, where he becomes confused at night.”
“Oh, don’t worry, that’s how he normally is,” she replied. “He always has nightmares. Did I tell you about what happened to him in Vietnam?”
She then shared with me her husband’s experience serving in the Vietnam War, including his post-traumatic stress disorder. Before I knew it, 45 minutes had passed on the call. It helped me understand that, for my patient, it was disconcerting to wake up in the middle of the night in an unfamiliar place and without his wife of 52 years.
Likewise, it was a harrowing experience for his wife to leave her husband at the hospital, when he was unable to walk on his own and they were both uncertain when they would be together again. I did my best to maintain some modicum of normalcy in the doctor-patient family relationship; she recounted stories from his life, and I informed her of his daily progress as he recovers from the stroke. It went unsaid, but we both longed for a day when these phone calls were no longer necessary because he was home with her.
My next call was a different experience. The voice on the phone said, “Good evening, is this Joshua?” I responded affirmatively and then asked my aunt’s doctor to hold for a minute while I conferenced in my uncle and cousins so they could participate.
Once everyone was dialed-in, the doctor began: “She is not doing so well today. Her airway pressures continue to remain elevated, and we are not able to wean her off the ventilator. She is now on day 24 and soon we are going to have to make a decision about the next steps.”
“The next steps — do you mean a tracheostomy or withdrawal of care?” I responded, making a mental note that I needed to translate those terms and their implications for my aunt to my family afterward.
“That’s exactly what we mean,” he said. “Are you available for a family meeting tomorrow?”
“Yes, of course.” l put a reminder on my calendar for 3 p.m. because, as the only health care professional in my family, I had tried to be present at every meeting to help interpret the medical jargon and guide my family’s decisions.
It was a luxury my family had after I became a physician, but that luxury weighed heavily on me as I thought about the countless other families — particularly Black and Latinx families, who have been disproportionately affected by COVID-19 — who do not have a personal advocate to navigate them through this novel disease and its courses of treatment.
After hanging up, I continued to make phone calls to my other patients’ families.
The next day, I received a critical test result for Mr. S.: His echocardiogram showed a large mass in his heart — the cause of his stroke. If not removed, it would cause more strokes and could lead to heart failure. We coordinated an impromptu family meeting for 3 p.m.; he would need emergency surgery.
My cell phone vibrated shortly before 3 p.m. that day through my hospital scrubs and disposable yellow gown. After I removed them, I checked my phone and saw a reminder for a “family meeting.”
I paused: Was this about the family meeting for my patient? Or the one for my aunt?
Staring at the alert on my phone, I realized that it didn’t matter: I could not attend both.
The duality is not lost on me: I spend my days making phone calls to the families of my patients, while waiting for update calls from the doctors taking care of my family.
I long for the moment when we can invite patients’ families and caregivers back into the hospital without fear or restrictions, though I know we have to continue these precautions until the country has gained control over the virus. Still, it can be hard to see that bigger picture, whether when asking Mrs. S. to make the decision to send her husband to open-heart surgery without seeing him or when advising my family about whether to withdraw care for my aunt without seeing her.
As COVID-19 cases continue to surge in states that reopened prematurely, countless other families will have similar conversations all around the country. There is, and will be, no easy solution ahead for families or for doctors like me, but we are all doing the best we can.
This reflection is dedicated to my aunt, Salema Persaud, who died of COVID-19 shortly after this was written.