Table 8.

Theme: Hospice and Nursing Homes

Sub-theme(s)	Phase 1: focus group		Phase 2: recommendations
	AA	White	AA	White
(A) Fears that hospice means death	“But when the hospice lady came, I would lock the gate. She called and I never let her in. She … called me on a Friday one day, she said, ‘I came to see G,’ I said, ‘Oh, we busy right now. I want you to come back in a few hours …. She said, ‘well, I'm here …’ I wouldn't let her. I just slammed the door. Yeah I did that for a long time.” “But we could never just say the word ‘hospice’ because hospice was death.”	“Hospice was a huge decision for me because if you sign for hospice, then you have to give up some things, like daily physical therapy… and the wrestling of having to make that decision ‘cos he was clear of mind the entire time and in pain… I didn't want him to give up hope.” “He stopped eating, and that was a big chore trying to get him to eat, but I—when I was aware that hospice was—that he was eligible for hospice, I started grieving then.”	See also section on Family Will Take Care of Loved One (1)Never mention the word “hospice” and do not raise the issue UNLESS the patient/caregiver raises the issue of hospice or expresses concern about burden of care OR asks about hospice. (2)Ask which family members are helping to take care of patient at home and if they are, what kind of care they are providing. If it is the kind of care home hospice provides, explain that this is the type of care that home hospice provides. (3)Ask whether there are any specific concerns (e.g., cleaning a port, bathing a patient with an open wound) about the family providing care, and discuss until all concerns are alleviated. (4)Make sure to emphasize that they are NOT there to take over; the family is the one who decides what and how it is done. (5)If open to it, talk about this is a helpful way to take care of the family at home. (6)Ask whether they have any concerns about this kind of home help. If yes, discuss until concerns are alleviated. (7)Whatever their response, acknowledge and respect their feelings/attitudes. (8)If, after this discussion, patient/family wants home health/hospice, ask whether they want you to make a recommendation for a referral to it. (9)Stress that all decisions are up to the patient/family. The PC physician is here to help, NOT to change the way family takes care of loved one.	(1)Assess how family and pt feel about hospice, but do NOT use the word “hospice.” Use “home health.” (2)Whatever their response, acknowledge and respect their feelings/attitudes. (3)If open to it, talk about how this is a helpful way to take care of the family at home. (4)Make sure to emphasize that this is an offer of help and assistance.
(B) Fears that hospice means taking change over the house	“It was like, well, maybe these people come in, talk about this man dying. I don't wanna’ hear this you know, so they don't come. That was my theory.” “Every time I look, there's a white person over this, there's a white person … look I gotta’ tell it like it is. Four of those people [from hospice] come to my house. All of them was Caucasian. Well, where are the black women? I find all of that … it really disturbed me. It really did. It got on my nerve.”	X	(1)Acknowledge and respect feelings. (2)Make sure to emphasize that this is an offer of help and assistance, but not taking charge or taking over. Explain that all decisions are ultimately up to the patient and family. “They are not there to change your home, your family, we are just her to say, ‘How can I help you?’ and then provide that help, and if the home help can't, then they will find out who can.”	X
(C) Our community needs to be educated about hospice	“But I had been educated about [hospice], then I could have, you know, I could have made better choices, and I would have been a nice person …. And I did apologize to them.” “Hospice … that was at the end of life. And I think its because of our upbringing, and I think if there was a way that we could educate … by means of seminars, or going into churches or whatever. If we could educate about what all hospice has to offer, and not see hospice as ‘they're coming, okay, they're gonna die.’ ”	X	(1)Recognize that rural AAs may not want to ask about hospice for a variety of reasons. (2)IF the patient/family do ask, explain about its services in the manner described earlier.	X
(D) Hospice support for patients	“And he was mouth open, everybody said they heard the death rattle … If he had a death rattle, I wouldn't have known. He wasn't eating anymore, and I said, ‘but he's hungry.’ She [hospice worker] said, ‘no, he's not hungry. He's not burning up no calories, not empty because he's not moving.’ She said. ‘And hospice, I love them.’ She said, ‘the body is shutting itself down,’ she said, ‘Mr. F. is not hungry.’ And I said, ‘but he ain't eating.’ She said, ‘mmm hmm.’ ” “So that's how hospice was …. I stand on the battlefield for them. They were just, … ‘what can I do?’ ‘what you need?’ ‘Do you need us to …’ Always treat you like you were the king of the hill like you were royal family. … I would never have enough to say about them ‘coz they played an important part in our lives. I told Mom, I said, ‘the minute anything happen to us, we going to hospice.’ ”	“And without her [hospice worker] help, and the last time N was in the hospital in Intensive Care, she met me, came that night, helped … and N was wanting a fan. I mean she raised holy heck with this nurse that said you did not need a fan, and she made sure he got a fan because he was burning up. So I mean, you know, the care that with the social workers and the nurses, they were awesome. I can't commend them enough, and they have been wonderful to me.” “[Hospice worker] was awesome at that. She also had the ability to give P a foot rub that would just calm him right down, and sometimes it was the case where we were upping the medication but the medication hadn't had time to take effect, we needed someone who could work a little miracle and buy us some time, and [hospice worker, bless her dear heart, could do … [Hospice worker] was awesome at that.”	(1) Those who received hospice care found it to be a source of support for patients.	(1) Those who received hospice care found it to be a source of support for patients.
(E) Hospice support for caregivers	“A lot of things were explained to me, and I thank God for that agency and the people who came into our lives were there, because if they weren't there, I wouldn't even know what to do. I wouldn't even know my head from my toes.” “They [hospice workers] wanna make sure not only the person that you're giving care to is being well taken care, but they want you to be well—and I don't know what it is, but seemed like you just—even the care with hospice people, seemed like you automatically became family. It wasn't like you were inviting some strange person that you never seen before when they come to your house, you know, like—it was none of that. They talked to my uncle like they knew him all his life. They talked to me, and I thanked God for hospice because if it was not for them, I wouldn't have a clue.” “But hospice—they helped—they was there for my mom, but it turned out, it ended up they were more there for me.”	“And I can't say anything but just accolades for them because I could not have done it, and I knew when my—when A. (Hospice Worker) was there, I could walk outta the house and I did not have to worry one minute.” “And so, you know, as I said, all the people that came into our house, even other certified nursing assistants, I was very pleased with them because they listened to what I was telling them.” “We had a social worker come in and spend a lot of time with us and they called several times. We were very impressed with the hospice that were involved with us.”	(1) Those who received hospice care found it to be a source of support for caregivers.	(1) Those who received hospice care found it to be a source of support for caregivers.
(F) Hospice care support by chaplain	X	“They were there every day, you know, and the chaplain stayed with me, and I did not need bereavement after. I mean, you know, it's very difficult, but they were there for me and I didn't need the bereavement group, but they had a memorial and I did go and they were so kind, even that night, to me and everybody else.” “The chaplain from the hospice that we, you know, he said he knew I wouldn't come … ‘cause she was taking … and he said you think she wants to talk to me. I said I will give her your number if she does. They reached out—they reached out to our family in New York for me, which …, but they did.”	X	Those who received hospice care received support from chaplain.
(G) Hospice care support after death of loved one	X	“[I] was holding him when he died, and when they came to get him, she—the hospice nurse—took me into the dining room and said let's sit down and just—do you wanna pray. And I said yes, but she wouldn't let me watch.” “The hospice nurse was there. We were changing the sheets when my husband started to pass, so she left me alone with my husband. She called the funeral home, she made the arrangements to have him picked up, and she stayed after he left, and she got everything out of the house. There wasn't a bedpan, there wasn't a bedside commode, there wasn't bed rails. He never had a hospital bed. He went very quickly, but the shower chair was gone, just everything that reminded me when I walked in our bedroom of it being a sick room. She took—and most of it, you know, of course, was donated to the hospice to be used again.” “The morning that he passed away, I had so much family there, children, brothers, the house was packed full. Everybody was sleeping anywhere they could find to sleep, but when it happened, we were all numb. There was so much emotion going on, and the hospice nurse, the head one, took over everything. All we had to do was just sit there ‘cause we were numb. She took over the whole thing. Everybody was called, taken care of, she got everything out of the house, and she stayed. She was wonderful. That's a hard—I could not have done whatever needed to be done. I could not have done that.”	X	(1) Those who received hospice care found it to be a source of support after the death of a loved one.

pt, Patient.