Table 3:

Patient and caregiver consequences of restrictive visitor policies

SubthemeParticipant 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 Female
Caregiver 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 Female
Perceived 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.