Table 6.

Theme: Discussing Death and Prognosis

Sub-themes	Phase 1: focus groups		Phase 2: recommendations
	AA	White	AA	White
(A) Death is not discussed	“And that was tough, because as a family unit we never discussed death. We never really sat around the dinner table and discussed death, and you know, really said, ‘well, this is what we're gonna’ do. We wanna’ make sure you're comfortable.’ … we just didn't talk about death, other than someone else's death.” “You know that [hospice] is the end of life, and I think that's because of our upbringing.” “As things progressed and he got more and more debilitated and weaker … and my concern was about him and did he have any fear about the end of his life. And so I never really did know how to approach him about it, but I just happened to be there one evening and we were talking, and he looked up at me and he said, ‘I'm not afraid to die,’ So when he said that to me, it gave me a calmness, a kind of peace within me.”	X	(1) Death is not discussed in our church or at home. Recognize that and approach this topic (death, impending death, possibility of death) with caution. (See section on prognosis for how to discuss prognosis.)	X
(B) Sharing prognosis in a negative manner	X	“But the way we found out was a nightmare, and I don't wish that on anybody, especially with a room full of people.” “All of these privacy things that everybody's so concerned about, and yet, at the same time, we have the entire waiting room being informed about your husband's, you know [health information] … And then earlier this afternoon, you [moderator] mentioned something again about HIPAA. So it's just—it's very frustrating that that's such a big deal and you have to sign these papers and all that stuff, and yet, when it's not convenient to the doctor, then [they disregard those procedures.]”	(1)Never share prognosis in a public space, and especially not in front of non-family members. (2)Never give date and time, always use range.	(1)Never share prognosis in a public space, and especially not in front of non-family members. (2)Never give date and time, always use range.
(C) Positive experience in sharing of prognosis	“The doctor explained it to me that the body is shutting down. He said, ‘You don't need to make him take him to the hospital and feed him, because the body is shutting down.’ He said, ‘Don't let them give you whatever to bring him back,’ he said, ‘because he is so frail, when they go down to press on him, they're gonna break the ribs.’ ” “I think when a person is understanding, then they're more accepting as to what is about to happen, and I think with him—both of us, it was comforting to know that we had that conversation … and it prepared us for what was gonna come.” “But Saturday morning, we went to see him and the doctor—one of the on-call doctors came by and he was telling him what was going on and how the lungs had really—were so compromised, that there was just nothing else they could do. So he, in his usual way, what is the prognosis. They with the military background, you know, he was always that. So the doctor was very honest. He says that is up to someone much higher than me, and I admire him for saying that because really, like he said, how do they know”	“The doctors were so caring and giving and hew was up one time and it was close to the end of life … and the doctors and the nurses were just crying with him and hugging him … just because he felt so bad and they were doing everything they could.” “The doctors at M hospital were wonderful. They told us, they confirmed that it was malignant, and then the doctor that was gonna’ do the surgery confirmed that it was very aggressive, but he said, ‘we can fight this together’ and he went on with encouragement … and the hope that you have to have… and they would get excited when we'd get a clear scan. So we all felt like it was a team effort and the doctor was working with us.”	(1)Explain in very simple and easy to understand terms. (2)Don't use medical language or terms. (3)Offer opportunity to ask questions. If family does not understand, explain it differently. (4)Physician responsibility to make sure he/she is clear and helps patient/family to understand.	As in (E) Who to share prognosis with, and how to do it
(D) Clinician specifying time to death	“I'm gonna touch on my grandfather because on a Friday afternoon, about—and the sky looked about the way it is now, we received—we—my mom and my sister and myself—received a phone call at the house that I'm staying in now, and that phone call told us that my grandfather had two and a half days to live. And I never, ever understood how a doctor can tell you two and a half days to live.” “and the doctor told me that they gave him three weeks to live. My husband lived three years after that. After three weeks, the VA doctor came to my house, the social worker came to my house, …. They came to see how my house was and if I was able to take care of him. … and after they checked and see everything and they had me to perform some things and they see that I was capable, they send him home. He stayed home about two years.”	X	X	X
(E) Who to share prognosis with, and how to do it	X	“I told the doctor, ‘don't tell her anything until you call me and tell me what the problem is.’ And when he did call and told me what it was, I says, ‘Please don't tell her. Let me tell her when she gets here,’ which would have been that day, but he did it anyways. So when they brought my mother to my house, she got out of the care, went straight to bed, and never got up again. And if he had listened to me that would not have happened. She gave up before she got here. So I really had some issues. It coulda’ been handled differently.” “My perspective is that … I had a good experience and I thought it was very loving, but the doctor saying it in front of the patient? Yes. Was that the right thing for my father? Yes. Would it be right for everyone? No, not necessarily.”	X	(1)Ask the family who to share the prognosis with. (2)Honor their decision. (3)Be a part of their journey.
(F) Miracles and hope	“As long as the patient is alive, there's always the possibility of a miracle.” “Only God knows when a person will die.”	X	(1)Ask family whether they want to know the prognosis. (2)Never be blunt. (3)Never tell the patient that they are dying. (4)Never put time and date on prognosis (always state as an estimated range). (5)Explain in VERY simple, non-medical terms what is happening in the body. (6)ALWAYS end by saying, “It's not in my hands; it's in God's hands.” If physician is not comfortable saying, “God” say, “It's in the hands of a Higher Power.”	X
(G) Bringing God into the sharing of prognosis	“So the doctor was very honest. He says ‘that is up to someone much higher than me.’ And I admire him for saying that because really, like he said, how do they know.” (God is the decision maker) “He had this wonderful doctor. All this man every talked about was God. That threw me off right there. I ain't never heard no doctor talking about God. Every time, you know, he's talking to me, he's saying something about God, and he said, ‘God got me her for this purpose, God got me here for this purpose, to make sure that he is well taken care of.’ And that is all he said.”	X	(1)If patient/family is religious, physician can say, “I see that you are a spiritual person. We are doing the best that we can and it's in God's hands.” (2)When sharing prognosis, always add that God is the decision maker, not the physician. IF not comfortable saying God, say “Higher Power.” for example, I don't decide, It is in God's hands OR if physician not comfortable, in the hands of a Higher Power. (3)If physician is comfortable, ask if you can pray with the patient/family.	X