Table 5.

Bereaved Caregiver Interview Themes.

Theme 1: The lay health worker intervention helped caregivers to prepare for their loved one’s death.

The VA program, well, I don’t know what would’ve happened if we didn’t have it… but, it made a difference in how [patient] lived and how he died. We were all ready… and he was too.

We knew what [the patient] wanted. We knew when he would want to stop treatment and we knew that he didn’t want to spend his last days coming to the clinic. We were really prepared when it [death] got close because this program made us talk about it a lot

The lay health worker program made me feel more comfortable asking [the patient] those hard and tough questions. And, I am so glad I did. I think if we hadn’t done that we would have never gotten home hospice so early.

I think it made [the patient] live longer… I really do. The program made him seem more carefree. It got all of us thinking and talking and preparing for the end.

I go to a caregiver support group, and, I just think about how different my experience was and I think it’s because of this program. I felt like I knew what to expect and was happy that we had a chance to really talk these things through so I wouldn’t be blindsided at the end.

Theme 2: The lay health worker intervention assisted patients to engage in clear, honest discussions with their caregivers about their end-of-life care preferences.

I really didn’t want to face that [the patient] was going to be gone … you know for good. But he went through this program, and that [lay health worker] called and called and then he would get off the phone and start going through what he understood was happening, what he wanted when it happened, and when he would want to change his mind. And, he talked about it so matter offactly that I was just forced to have to go along with it and listen. I didn’t know that it would make such a difference at the end… knowing that he lived the way he wanted and died the way he wanted.

The first thing we talked about was that I would be his decision-maker when he was too sick to make decisions for himself. Then, we talked about what things would make him want to stop chemo. Then we talked about stopping chemo and then we talked about hospice and that he would rather go to the VA hospice and not be at home. There were no gray areas here… very decided and clear.

It was good that we talked about it in detail. I wouldn’t have known that he didn’t want to go to clinic every week had he not told me. We were pushing for him to go through all the treatments but when he told us what it was doing to him and how it wasn’t what he wanted, that he didn’t want to rely on us tor drive him back and forth, that he didn’t want to be a burden, that he really wanted to go to the lake one last time … well, that hit home for us.

I heard him talking on the phone several times, that he didn’t want to stop his boating business at all if he was going to die. He was trying to figure out how all of this—meaning life—was going to work out with the every week chemotherapy and every day radiation if he was really going to die in the next year. He really struggled about this and it was crazy that he was talked about his struggles with us and with the program that he was in at the VA. It was good to talk about some of these things we never probably would have talked about.

It’s so hard when they don’t talk about it and then you are left wondering what you should do in that situation when your dad can’t talk for himself. This program made us talk about it well before he died and it was not fun but now I am so glad we did it because I am not left wondering if l made the right decision for him.

I went through this with my mom and now with my step-dad. I don’t ever remember mom’s doctors asking these things. So, this was a totally different experience with my step-dad. The fact that my step-dad had a program to help him with all the decisions, and talking about what he wanted, and helping him at the end, also with the advanced directive forms … this was very very different than what I experienced with my mom. He had to make decision for himself and then talk to me about it and this was a big change from how I thought it had to be.

Theme 3: The care received by patients at the end-of-life matched their stated wishes.

He wanted to keep pushing—keep getting treated—hoping that he would be able to beat this thing. He made this decision knowing the treatments weren’t going to help and could even worsen things. But he wanted to keep pushing and he did until the very end.

I don’t think we would have ever known what he wanted at the end had it not been for this program. We are at ease knowing that the great care he got when he was dying was exactly what he wanted.

I am always hearing bad stories about people having these awful things happen at the end of their lives. I feel like we are lucky that this program helped my husband get what he wanted.

I wanted him to keep going because there was a research study that he could have joined up with but he didn’t want that He wanted hospice at home, wanted to spend time with his grandchildren, wanted to move his bed to the living room so he could be more a part of the family, and wanted to spend his remaining time like this. He died at home on Labor Day, surrounded by all of his family and friends, just the way he wanted.

I read all the time about how many patients with cancer never get the chance to tell their families what they want in the end. And when we joined this program, it was scary at first to talk about it, but, he had the chance to tell us what he wanted not once but many times. And, that’s what mattered the most because he was able to get what he wanted at the end and wouldn’t have been able to get that if he hadn’t spoken up and talked to us about it.

This program made a big difference for us, all of us, really, [the patient’s] family because we got to hear what he wanted at the end and got to see him get exactly that. I think we are all at peace and the grieving process was hard but we all know he went the way he wanted to.