TABLE 2.

Themes and Illustrative Quotes from Qualitative Interviews

Looking Out: Caregiving Support in Hospice Care

“If there is lack of family support, which happens a lot in my community and my population of patients…they kind of panic faster. They’re home alone, having trouble breathing, and sometimes they won’t call hospice, they’ll call 911…it’s fastest…it’s three digits...that’s it. It’s all this hysteria. Oftentimes they’re all alone or immediate family will show up…maybe, if they like. It’s like they’re left there.”

What it Really Means: Patients’ Knowledge and Understanding of Hospice

“Their physicians say you need extra support at home, so we’re sending you on hospice. People who have no clue what hospice is think, ‘Oh, I am just going to get a nursing visit.’ They don’t understand the prognosis that if your disease progresses the way that it should or the way it has been you have less than six months to live. That is something I have been trying…I always try to do that from the beginning, like ‘Do you know why you’re here? Sometimes they don’t know what program they’re on. Sometimes the doctor might tell them ‘We’re putting you in something to manage your pain.’ They’re not really clear.”

On Board: Acceptance of Death and Alignment with Hospice Goals

“Sometimes there’s just complete discord, disagreement among themselves, and maybe generally. I mean, sometimes you can’t understand why they came on hospice to begin with, because no one seems to be on board with it…and there’s no requirement that they are. I mean people who don’t sign resuscitation, there’s no requirement. We hope that they’ve come to us when they’re ready, so clinically, they have to be ready. But there’s a level of emotional readiness or openness to where—’this sounds like my choice now’”

On the Same Page: Communication with the Hospice Team

“We had to [rely on an interpreter line], and it’s not really comforting for the patient or the family to have that. We’re not really bonding. I develop really deep connections with all of my patients, because we talk a lot, you know, we speak the same language, and it’s easy for us to communicate – I understand them and they understand me…The language barrier is really an issue as far as calling 911, especially at night because most of the [hospice] nurses are English-speaking. ”

Like a Good Student: Symptom Management and Risk Reduction Practices

“The family was very involved and they were able to really manage and communicate with us exactly on the symptoms, and her husband had a very good… he was like, searching and informing himself of the care, and she knew how to manage her medication with a lot of teaching from us, and everything, to the point that she became very, very, very well-managed.”