Table 4.
Coding Categories, Definitions, and Narrative Examples from Exit Interviews of Family Members of Hospice Patients Living in Nursing Homes
| Code | Definition | Example |
|---|---|---|
| Communication | Communication between nursing home staff or nursing home and family (not hospice related communication) | I sat down with the head of the nursing home, [staff name], at [nursing home name], and I said “it’s like your staff doesn’t know from one shift to the next shift. If you have an employee that works two days a week, how many days out of the nursing home, they don’t know what’s on the floor, what’s not on the floor. They don’t know what’s changed and what’s not changed. I don’t know if there’s some way you can come up with a piece of paper, that says these patients now get this and they need to read that before they go on their shift, or what. But it’s like, the helpers don’t know. And in a week’s time, the nursing home can vastly change if you’re only going to have a girl work two days a week or three days a week … you need to make sure that they understand what a patient can do and what it can’t do, and how to handle the patient”. 02-0468-0203 |
| Pain Management | Pain management issue that was related to the nursing home setting | But, in the absence of consistent caregivers, and that’s one of the problems we had out there, having three different caregivers a day and on a weekly basis, you know possibly twenty caregivers of people who didn’t know what my mom had been given the night before and what pain level she was having. 02-0252-0115 |
| Hospice Collaboration | Comments made pertaining to hospice involvement in the nursing home. Positive and negative comments related to collaboration between nursing home and hospice. | At any time, when we talked with hospice employees, we were able to get what we felt was the right plan of action. 01-0261-0085 |
| Positive Comment | A positive statement related to end of life care in the nursing home | I mean anything she wanted that the [care facility] people tried to provide to her. If it was not something that they could do, they would just call and say, “She would like to have whatever.” It was usually liverwurst or some disgusting thing. 01-0104-033 |
| Family Expectation and information needs | Family holds and expectation and points blame/praise specifically identifying what should/was or should not/was not done | But I kept track of my dad’s medication pretty well, and I think if they’re going to make adjustments, they need to let the caregiver know that they’re adjusting medication, oxygen, whatever. And honestly, that’s just for somebody that’s involved. If they’ve got a caregiver that doesn’t care, they probably don’t want to know the medication. But I did. 02-0458-0198 |
| Resident care issues | Instances brought up describing poor care by the nursing home. | …the nursing home was still trying to give mom pills. And she wasn’t able to swallow or anything and they were just sitting in her mouth. 01-753-0174 |