Article Figures & Tables
Tables
Characteristic No. (%) of participants
n = 21Age, yr Mean ± SD 36 ± 1 Median (range) 37 (32–58) Gender Female 13 (62) Male 8 (38) Specialty* Critical care 5 (24) Internal medicine 5 (24) Palliative care 11 (52) Time since training completion, yr, mean ± SD 6 ± 4 Note: SD = standard deviation.
↵* Several participants had mixed practices but were identified by their primary practice; 2 internists also acted as palliative care consultants, and 1 palliative care specialist also worked as an intensivist.
Subtheme Participant quotes Provider consequences Increased time and effort on communication and need to establish limits “I think that the main thing with families was that we would essentially have daily conversations with families, going over clinical status and changing it in accordance with just daily conversations of 15 to 30 minutes, multiplied by the number of patients that we have. So it was really just a huge increase in the work volume. And I think for family members there was just such a need to have that dialogue because they couldn’t see or participate in the care in any other way.” — GIM3 Male
“I did notice at the beginning, families were just very happy to get any communication at all. But as months went on that changed from gratitude to just anger and not being able to come in and not getting daily updates and I would perpetually explain to the families that my practice is to update them multiple times a day at the bedside and to talk to anybody who’s there, but because … if I’m on the phone all day and this takes me away from the patient’s bedside, I’m not able to always promise to call every single day even though I want to because I can’t be in 7 places at once and if their loved one needs me or needs resuscitation or anything like that … I can’t be on the phone to someone else’s family. And I think once I framed it like that — I want to call you and I want to be on the phone with you, but it’s taking me away from them if they need me. Then that helped change their mind frame, but I did my best to try and set expectations with that family member.” — ICU5 MaleIncreased efforts to establish trust and connection to family “I mean, there’s no substitute for being in person with someone. When you’re with someone and they’re not there, you’re basically doing it blind when you’re on the phone, you’re robbing yourself of one of the most important senses, which is your visual, your body language. And body language gives off an energy where you can connect with someone you. It’s easier to empathize with someone when you can see what they look like and over the phone you just can’t, it’s a voice. It’s impersonal. You can say any … it’s almost like a conversation on the internet, your username. But when you’re in someone’s face, when you’re sharing a space that are 4 walls around you’re together, you’re present. So it makes a huge difference.” — GIM3 Male
“Very difficult to establish a relationship because they were not in the unit. I usually, in normal times … I advocate for patient presence during patient rounds because I think it’s saving me time. It is creating trust. It is transparency. They realize that we don’t hide information or whatever. There is a lot of information communicated during the rounds so they are aware of changes, minimizing the time and spending on phone calls and updates and when we have a more rearranged family meeting, they already [have] a lot of information already incorporated. So it’s think there’s only benefit to have the family presence during rounds and the pandemic cancelled all of it. Horrible. Honestly it’s horrible.” — ICU2 MaleDecreased input from family on patient status and response to treatments “I think that this has been so used to having family as people who help with identifying symptoms, quantifying, improvement with treatment; being able to have them nearby and easily accessed so that the ongoing psychoemotional spiritual support can be provided them and their families. And in their absence, that that became a little bit more difficult from the point of view of assessing the severity of symptoms, the effectiveness of treatment and certainly being able to provide the emotional support is necessary”. — PC5 Male Supporting patient–caregiver communication and being a surrogate for family “Sometimes we … I would go, and I and our nurses would go into the rooms because these people are alone and it was … didn’t … it was not the best that they were alone for their last hours and days all the time because, again, the nurses were going less frequently and the MRP wasn’t going in at all at that point.” — PC9 Female “I called his family and to say, you know, he’s awake, he’s interacting and he’s articulated that he wants to stop. This is too much for him. And so we’re purely just going to focus on symptoms and comfort and pain, and they said they weren’t going to come in, but then they gave me all these messages to tell him and so that aspect … most of the patients we’re palliating with families that come to the bedside; they are comatose, likely can’t have awareness of what’s going on. But in this situation, there was kind of the anguish associated with me having to portray the final thoughts of their loved ones and then me not knowing what he’s thinking … like maybe he understood why they weren’t coming in, but I didn’t know that and it’s enough for him to realize that he’s dying and I just didn’t want to ask the questions of … So that was awful … that was probably the worst experience of anything.” — ICU3 Female The emotional toll of being in the role of advocate, gatekeeper or enforcer of visitor policies, which was exacerbated by lack of evidence and inconsistent enforcement “It’s like there is this inhumanity to the whole interaction where you are speaking to someone who you’ve never met over the phone. And telling them and you’re acting as the gatekeeper, you no, no you can’t come in. No. No, yes. Only one son can come in but the other no.” — PC4 Female
“There was one patient on one unit and they had 6 visitors at one time, and then they would go to another unit and be told no visitors allowed. This would be 12 hours apart. It was incredibly difficult. Some units would say no visitors whatsoever, some would say one at a time, some would say one per day, some would say no one under 18. So it’s incredibly inconsistent and when patients who moved from unit to unit, that was so challenging to try to tell families why there’s no visitors.” — PC12 MaleSystem consequences Changes in occupancy, length of stay and place of death “Everyone wanted to be discharged yesterday. Patients wanted to stay home to die there.” — PC12 Male
“I think that was one of the biggest, not COVID but COVID-related, shifts was people dying at home. I know this happened everywhere. I think we had an extra 100 people die in Q1, or Q2 I should say. In [region], when compare[d] to the year before, Our PCU had been 15 beds, we are now 10. We gave up 5 because we couldn’t fill them. Oncology needed isolation and private rooms. And even the 10 that we had there was a reasonable balance. There was a while it was hard to fill even 10 … So that shift of people choosing to go die at home. Really. I mean, it was driven by people’s strong desire to be with the family. To be able to have visitors.” — PC8 Female
“I guess it also changed how, you know, about disposition planning, especially at the peak of COVID because we were mindful of what other services would have been impacted by COVID. So, you know, some families were concerned about going to hospice because they wouldn’t … the visitor restrictions would still be in place versus they may be more motivated to get home for end-of-life care.” — PC6 FemaleNote: ICU = intensivist, GIM = internist, MRP = most responsible provider, PC = palliative care physician, PCU = palliative care unit.
Subtheme Participant quotes Patient consequences Isolation and dying alone “The constant conversations around visitor policies is heart-wrenching. The number of people that I have watched die alone because we didn’t get the timing right on the end of life.” — PC8 Female Lack of caregiver support, advocacy and care “Patients would benefit the most from having families around when they are able to interact with them, where they can advocate for them … And again the need to gain comfort from their family.” — PC13 Female Prioritization of family presence over other aspects of care “Thinking of the one who had a new diagnosis of cancer, it became very complicated to try to ascertain what kind of … what she wanted … She really wanted to see her family and her kids were not being allowed to visit in the hospital. So I think she decided to be discharged home. She subsequently came back with symptoms but she wanted to see her family and she figured, you know, this is maybe the only way to do it is just go home. You know, I’m not sure if that goal would have been different had her family been allowed to visit.” — PC1 Female
“There was a case … where essentially a decision was made to remove a patient’s oxygen in order for the family to actually be virtually present for end-of-life because otherwise they were concerned that they wouldn’t be able to predict when that would happen and they would miss the moment and … they really wanted to be there for the final breath and it just really struck me that it was a decision that … I mean, maybe they would have made in different circumstances that maybe not and it may have just totally drastically changed what this person’s end-of-life looked like and even their length of life and the end of life because of just the circumstances around COVID.” — PC3 FemaleCaregiver consequences Caregivers were felt to be unable to provide care or personally assess patient health, leading to difficulty with decision-making “The other aspect is usually in discussions about … how someone is declining … I commonly ask patients’ family what they have seen in like the last days … in the last week … and getting them to explain that as a sort of a way to advance the conversation … But in these situations they haven’t seen the decline. They have not been able to see their loved one who is dying and so it made it a little bit harder, and so they sort of have to trust what you’re saying because they are not there.” — PC11 Male
“I think it was difficult for them to appreciate the patient’s clinical status without seeing them… knowing how short of breath they were or how sick they appear to us clinically. I think it was harder for them to have a grasp on that. Whereas other family members that are able to see, you know, family members suffering right in front of them. It’s easier for them almost to make that decision. In that, you know, my family member is suffering and this is not an appropriate quality of life for them. I feel like it was a little bit more challenging to have families really appreciate how sick patients were.” — GIM7 FemalePerceived inadequate communication “Probably the greatest challenge for us was COVID related to communications and I just, to put it into context that all of the patient relations complaints that I received — and I’ve never received patient relations complaints before COVID — but all of the ones that I received were related to communication and a perceived inadequate communication.” — ICU1 Male Family access to supports “When I would call all the families at the end of the day. I was concerned about the support that they had, so when their loved one was kind of sedated and paralyzed and probably … hopefully had minimal awareness of what was going on. I’ve heard there was like so much anxiety and grief and PTSD associated with being at home and terrified like not actually knowing what’s going on.” — ICU3 Female Increased risk of complicated grief “So much more challenging largely because of the 2 factors I already outlined — the rapid deterioration with lack of preparation for sort of an end-of-life course, which is a risk factor for complicated grief, and also the inability to be present with their family members.” — PC3 Female Note: ICU = intensivist, GIM = internist, PC = palliative care physician, PTSD = post-traumatic stress disorder.
- Table 4:
Populations at greatest perceived risk of being disproportionately affected by restrictive visitor policies
Population Participant quotes Older adults “I mean many of these patients had older partners who don’t use computers and know … You can’t see them and they can’t see you and they’re just hearing another voice on the other side, you know, as you’re standing there and telling them like, you know, like this is the choice … the choice is you know, that they’re gonna die. You have to say goodbye and your loved ones dying and no you can’t come into the hospital.” — PC4 Female Non-English-speaking patients and caregivers “Some of the patients who are admitted couldn’t speak English or were elderly and patient families were absolutely terrified. So keeping patients updated on COVID was exceedingly difficult during this time.” — GIM2 Female Note: GIM = internist, PC = palliative care physician.
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