What’s scarier than being in the hospital? Being there alone. During the COVID-19 pandemic, more often than not, family members are not allowed at the bedsides of loved ones even when they’re dying.
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While hospitals are limiting visits to protect everyone, these restrictions create hardship for patients and their loved ones. They can also impact medical care, which has always been collaborative. Doctors and nurses have long depended on visitors to lift their patients’ spirits, tend to their emotional needs, and tether them to their community.
How can clinicians fulfill their medical responsibilities and at the same time play more of this needed nurturing role? In this time of uncertainty about the virus, how can we keep people safe and also harness what we know about love and family to help people heal?
To learn more, I reached out to health professionals at nearby hospitals and a heart patient who recently returned home after a harrowing three-week hospital stay.
A Couple's Hospital Experience Without Visitation
Retired gastroenterologist Dr. Burt Goldfine entered California Pacific Medical Center hospital in San Francisco for a heart problem in late March, after California became the first state to lock down because of the coronavirus.
He is now back home with his wife, Deborah Birnbaum, who worked as a marriage and family therapist for more than 40 years. I spoke with them on the phone in mid-May.
Can you tell me about your hospital experience?
Burt: I have a history of heart disease with a leaky heart valve, but what actually put me in the hospital was a blood infection that morphed into kidney failure. I pretty much came back from the other side.
Deborah: There’s no question that Burt’s illness was severe, but by far the most difficult part was that he was in the hospital for three weeks, and I was not permitted to see him at all.
Even though he was near death?
Deborah: It’s all relative. What they told me is if he was actively dying, they would allow me to come, but if he was not actively dying, I could not. It was a no-win situation — I could see him to say goodbye if he was almost gone, but if he was fighting for his life, trying to heal, then my support, my connection was not permitted. It was a traumatic experience for both of us.
How did you communicate?
Burt: Mostly by telephone, and often through my heart doctor, my kidney doctor, my hematologist, the nurses.
When I was first in the hospital, I was in shock and had little blood pressure. I wasn't lucid enough to miss anybody. She was missing me. But it wasn’t until they stabilized me and my brain started working better that I got in touch with how alone I was.
When I was out of it, it wasn’t so bad. They were trying to save my life. But the isolation got more traumatic, more intense as I was improving. The doctors and nurses were great, but not present in the same way as my wife would have been.
Deborah: We understand the need for caution. We are supportive of all the measures that have to be taken. But there are trade-offs. The isolation Burt was experiencing at a time of trauma only increased the trauma, increased his emotional vulnerability. Our separation also increased my feelings of isolation and made it more difficult for me to advocate for him.
It also seemed like the doctors and nurses were under more pressure. Because I couldn’t visit, they had to devote more time to communicating with me. I called often, itching to know how Burt was doing.
Burt: When you look at the amount of time with doctors and nurses compared to the number of hours I was in the hospital, it’s not much. The doctors’ visits came to about an hour a day. The nurses were around more, but they had other patients to see.
So you were by yourself most of the time?
Deborah: We had the phone and the iPad. The iPad belonged to the hospital, so someone had to bring it into his room.
Was there more of a connection when you could see each other?
Deborah: Definitely. It put a familiar face on the screen. But we still couldn’t touch each other. Keeping us apart rather than together was contradictory to the healing process physically, mentally, and emotionally.
It seems like it was almost as hard on Deborah, who wasn’t in the hospital, as it was on Burt.
Deborah: Well, we had different experiences. What we wished for above all else was that he could come home. And now he has.
How long have you been home?
Deborah: Three weeks.
Burt: This doesn’t apply to everybody, but Deborah is a strong advocate for justice, for care. After being married to a doctor for a long time, she probably could have become a doctor herself, without ever going to medical school. There were a lot of important decisions to make. I missed her being there to advocate for me.
And despite their best efforts — nice paintings on the walls — hospitals are cold places. Cold institutions. Especially if you’re isolated. You’re in a deep freeze.
You were in a private room?
Burt: It’s a new hospital and most of the rooms are private, so that under ordinary circumstances, the patients’ family members can have their private time. But without visitors, it can be so lonely.
It’s interesting what you say about hospitals being cold and impersonal. Twenty years ago, I was in Northern Ireland with my mom and she fell and was in a hospital for a week. She was in a ward with about a dozen beds and it always seemed to be full of visitors, nurses, priests. She had a great time making friends with all these strangers.
Burt: You know, it makes me wonder about our society and our need for privacy. There are benefits, of course, but all that privacy leads to less of a sense of community, like what you described your mom experienced in Ireland.
A Doctor and a Nurses's Perspective Perspective
The night before talking with Burt and Deborah, I spoke with a doctor at the hospital where Burt had been.
How do you tell people they can’t visit?
Doctor: It’s an art to deliver that news. How do you say that in a polite way? It’s for your own safety, we say. Nurses do most of that. Our patients tend to be older, and usually their spouses or siblings are older too, so they’re in a high-risk group.
But we’re using technology, like FaceTime on the iPad, in ways we never have before. It’s not the same as in person, but it makes a positive difference.
But we got a family member on the screen, and that helped orient him.
The doctors and nurses are usually the ones talking with family members about care decisions. Now we do almost all that on the phone instead of in person.
Are you talking to one person at a time?
Doctor: Yes, usually. Back in the day — it sounds funny to say that — we would often see large groups of family members, five, six, even more than a dozen. When we made treatment decisions, it was often with many members of the family present. When decisions were being discussed, I would see family members look at each other for corroboration. I could see the family dynamics playing out.
Now, we talk with one family member at a time, mostly on the phone, and sometimes they’re wondering how other family members are doing because they’re not seeing each other like they would have in the past.
Has it changed your role as a doctor? Do you need to respond in a different way emotionally? I’ve read about people who’ve died alone.
Doctor: For people who are at the end of life, we greatly appreciate the assistance of the palliative care team. There’s always a nurse around. There are spiritual care services as well. B
But mostly, they’re there one at a time. The important thing is that we tell the patient that we’re communicating with their loved ones.
Everyone is wearing masks now, right? Nurses, doctors, visitors. How is it for you wearing a mask all the time?
Doctor: I can breathe OK. The days are long. When I’m alone in a break room, I take it off. We’ve restructured how we do so many things, like our protocol for wiping down rooms. It’s become the new normal. Many of us wear goggles as well. Our expressions are hidden. We have to communicate more with our eyes.
I also reached out to a nurse who works at another nearby hospital. She asked that her name not be used.
Can you tell me about the visitor policy at your hospital?
Nurse: Currently, with COVID-19, there are no visitors allowed, with three exceptions.
If you’re going in for a procedure, surgery, or hospital admission, there’s only drop off and pick up. No visitors.
If you are going to the ER, they screen you at outside tents before you’re allowed to enter the hospital. If a patient is to be admitted, they are COVID-tested and only after the results, which we get back within an hour, are they allowed into the hospital.
All staff is only allowed inside with a mask.
What are the exceptions?
Nurse: One, if the patient is a minor, one parent or guardian may accompany him or her. Two, if someone is giving birth, one partner may accompany her. Three, we allow limited visitors if the patient is at the end of life.
All those visitors are screened for symptoms of C19 and they must wear a mask.
For the patient at the end of life, is there a limit to the number of visitors?
Nurse: A couple weeks ago, I had an intubated patient in the ICU. Her tube was removed and I FaceTimed her family member so they could see each other.
That is what staff is doing for critical patients who cannot use a phone themselves. The next day, I was not there, but that same person was about to pass away, and her husband and son were let in to her bedside — she was not COVID — and were given PPE (personal protective equipment) to wear because it was the ICU.
I can’t speak to other hospitals in the area, but I have a good nurse friend working a COVID unit in New York and my cousin is an ER doctor in southern California and they say their hospitals are doing what mine does.
While some restrictions are likely to be lifted in the coming weeks and months, it’s also likely that it will be a long time before hospital policies and practices regarding visitation go back to the way they were. If they do.
One group addressing the problem of hospitals not allowing family members to be at the bedside of dying loved ones is the newly formed Virtual Funeral Collective, which recently published Death, Grief and Funerals in the COVID Age.
It’s an online guide of rituals and resources to honor those who die during this pandemic and help the living grapple with the crisis. It includes suggestions to help foster connection, like sending cards and letters, which are physical reminders of love. It also provides guidelines on conducting funerals and memorials amid physical distancing.
“How we survive this pandemic depends on how well we take care of each other,” said Dr. Candi Cann, lead editor of the white paper.