Table 2.

Tensions Experienced by Patients and Family Caregivers during the Covid-19 Pandemic

Tension: The strain that occurs in a situation of high patient/family need and low hospice and palliative care resources.
Type	Subtype (need/resource)	Illustrative Quote
Care resources/Care delivery	Heightened care needs of COVID patients/Limited hospice and funeral services	We didn’t know enough about COVID at that time and we didn’t have the measures that we have today. So, these bodies could not be safely transported into uncontaminated areas. So now, we have to tell the family, “Your loved one has died. You have not seen them, but we cannot bring them home.” And now, we try to help them- try to coordinate getting them to now be buried, and the funeral homes were not taking any more bodies. They could not take them. They could not bring them into their facilities anyway because these were COVID-positive individuals. (P16, Community Health Worker)
	Heightened psychological distress/Inadequate psychological support	…it does make me think of psych care during COVID, which has just gone to pot completely. I mean, we used to have at least some people that would go to the home to provide psych care, and it’s very limited now, and it’s telephone only, which a lot of our patients don’t really want. And it’s been really challenging to get psych care for our patients since COVID. (P8, Registered Nurse)
	Hospital-home transitions/Shortage of caregivers and resources for home care	So if our patients were in the home and now they tested positive when in the hospital and then they wanted to send them home, the hospitals were stuck because they were like, ‘I can’t bring this patient anywhere.’ The nursing home’s not going to take them. The hospice organization will not go into the house or the home health organization. So, where do we go? And then the patient was being sent home with not a continuity of care, with nurses going in to assess them. (P5, Nurse Practitioner)
	Need for hospital care/Overwhelmed medical system	The hospital system was very overwhelmed, and at that time, because of the PPE shortages, hospices were not able to carry on as usual. (P11, Physician)
Communication	Need for telehealth/Limitations of telehealth	There are many times, for example, when our patients are close to death, and families, they don’t all live nearby. But their mom is dying or their dad is dying, or they want someone to talk to. They want to be filled in, and you have a whole conversation with them over the phone, you educate, and you provide support… I was informed that you can use telehealth for those visits, but it’s not something that can be ongoing. You can’t open a case per se on a telehealth visit. It has to be an in-person. So, there are certain things… I think can definitely need more work on. (P29, Social Worker)
	Need for quick decision-making/Inadequate communication	The turnover was super quick because most of the patients… came in and crashed and burned. They just came in really sick and got even sicker and died. Sometimes they came in really sick, stayed really sick, and then died. But that was, you know, a week or two. It was unusual for somebody to be in the hospital for a month during the surge. And so, the turnover was rapid. You could have one or two conversations with patients and family– or usually not patients. Mostly families trying to make high-stakes decisions and then either the patient’s condition made the decision for you or not. (P22, Physician)
Policy/Guidelines	Need for home visits/Home visitation restrictions	So, when the surge occurred, the providers, the MDs, and nurse practitioners, all homecare visits have been stopped. That is a challenge for us, because all we can rely on is calling the patient to get information and also relying on the visiting nurse. So, we weren’t able to send a doctor out. Let’s say a patient has a new wound or they’re having shortness of breath. We weren’t able to send a doctor in the next day. That was stopped for quite some time. (P23, Registered Nurse)

P= Participant