Table 3.

Roles of family members and friends were shaped by the needs of the health care system (Theme 2)

No.	Quotation	Subject	Relationship to Patient
1	When she was in assisted living, she falls and they want to call 911. She’ll say, “call my daughter and ask her.”	Subject A, woman in her 60s	Daughter of a woman in her 90s not on dialysis
2	I’ve been working on my mother for years over these things! You know little bits and pieces … I finally even said “where are you going to be buried?” … she is a veteran obviously … and I would say, “do you want to be buried with your parents?” And she said “Well, I don't know, I don’t know.” Finally, I said to her one time, my friend is going to be cremated so they can be put in The Wall (this was in San Diego) … And her time in the Navy … it was the best time of her life. And so, that finally rang a bell and she said, “That wouldn’t be a bad idea!”
3	And he was so sick that he didn’t take any identification with him … he just went to the hospital. And he wasn’t able to tell them about his history. He was that sick. So … when my daughter came home from work that night, the house was unlocked, his truck was here, he wasn’t here and there were signs in the living room that there had been a problem … She searched all around the house and all around the yard for him in the neighborhood. And then she finally called 911 … and found out that he was in the hospital … she went to the hospital and kind of explained to them his history and also that he was being treated at the …VA. And the hospital called the VA to get his history and they didn’t get any response from the VA for 2 days!	Subject E, woman in her 80s	Mother of a man in his 50s not on dialysis
4	So, sometimes I get really mad at the VA. Sometimes when he will have an appointment with the VA and I’ll say (I had to get really upset with him one day) “I don’t particularly care about prying into your affairs, but as far as the medical thing is concerned, I need to know what is going on … just so that I can deal with it.” … Oh, boy! If you have someone that won’t communicate with you, that’s pretty hard. But I think if people were encouraged to involve the family a little bit more. I don’t know how much … I know that the doctors and the staff, they are busy people, they don’t have time to just sit and talk to somebody but I am sure (there must be) someone from social services there? … That’s why I say I get upset with the VA, because I think … either they should contact me … maybe they don’t even know that I exist, they must because you are calling me. So, I feel that the family should be involved in all of this.
5	I think having the opportunity to meet with his doctor earlier in the process would have been helpful … I was sending him (with) questions to ask but sometimes he would ask them and sometimes he wouldn’t, and I didn’t have a way to get information, especially being the VA. I would have had to have been with him, but he wasn’t always sure when he was going in if he was going to see his doctor or if he was just going to have some lab work or a check-up or just go to the appointment. So being a family member but also being a mother and I have to work outside of the home as well. So it would have needed to be something that I could schedule and then planned to be at, rather than just start going with him to all his appointments … he goes downtown to the Seattle VA for his appointments, so those are not quick appointments … But when we were actually in the program and I was with him for that 2-week training, everyone was very generous with the “Here’s my card, call me if you need anything or if you have any questions.” And so by that point I did feel connected into the system, where at least I knew the initial call of who I could get a hold of. But prior to that, not. That would have been helpful.	Subject F, woman in her 40s	Daughter of a man in his 60s on peritoneal dialysis
6	I think they fell in love with me, because I finally told the truth. Yes, they (could) get their job done.	Subject C, woman in her 60s	Bereaved wife of a man in his 80s who had been on peritoneal dialysis
7	I told him “if you don’t do it you are going to die.” And I told him he should do it and he said, “Ok, I’ll do it. I don't want to” but I said “Dad, you need to do it. You either do it or you die!” And he did it. I'm glad he did.	Subject G, woman in her 40s	Daughter of a man in his 70s on hemodialysis
8	A cousin of mine just went through this. Her father got sick, and she was in Detroit. So he was on dialysis (when) he went out. Her sister was 16. He called her in Detroit to tell her she had to make decisions on what to do next … she got him down here just two days before he died. It put her at a disadvantage, you know. She didn’t even know she was next in line … Well, when they figured it out, it couldn’t be the sister because he had a daughter, he didn’t have a wife, so it fell to her. And that’s a bad time to have to hunt people down, you know, for that.	Subject H, woman in her 50s	Sister of a woman in her 50s on peritoneal dialysis

VA, Department of Veterans Affairs.