Table 2.

Themes

Theme	Representative Quote
QOL comprises multiple domains for patients with blood cancers	“At this point—the key thing so far is about energy…I can be feeling without energy whatsoever. I have a long list of things to do and they don’t get done.” P2 “I wanted to be able to be independent around the house…I can remember when I first started treatment. It was during the winter. And I emotionally got totally distraught because my wife had to go clean off the car from a snowstorm. That just bothered me to no end.” P11 “I was going through a rough patch so it was a bit difficult and quality of life wasn’t really good. However, I got to—I didn’t get to eat with my family and kids because I couldn’t, and I didn’t get to open gifts or maybe go do things with them.” P17 “I think independence is the thing I cherish the most. I like to do things for my myself, by myself, not have other people do them for me.” P3 “he was pretty beat up from - between the leukemia and some of the treatment, so he was definitely struggling to do day to day - like getting out of breath walking up the stairs, that type of thing. Like if we could go for a walk around the block, that was - a nice day.” BC2 “And my father used to always feel better after his appointments because he would leave there and say we know what’s happening for the next six days. Let’s go. That and just as we needed it, pain management. That was important for us.” BC8
Patients and caregivers value transfusions	“But when I get a blood transfusion, I can - I have a little more spunk.” P15 “I’ve had platelets and hemoglobin - platelets more often than hemoglobin. And I consider them lifesavers…they enable me to feel better physically and emotionally.” P1 “So for me, it [transfusions] absolutely—it sustains my life…It’s both lifesaving ad I do feel better in the short realm. When I need the transfusion, it’s because my energy level is low…So it has a direct impact on every aspect of my life really.” P2 “And so the transfusions don’t seem to have any—it’s not like chemo where you think I wish I hadn’t done this because it’s destroyed my quality of life. And what I’ve experienced was that after transfusion, I actually felt better. So, I just can’t see any downside to it.” P7 “I’ll get petechiae and I know I need platelets or I can’t - I’m winded and can’t do a whole lot and I know I need blood, and I do feel much better after I get blood.” P17 “You are here all day if you need all the blood transfusions and stuff like that…But my biggest problem is the transportation getting back and forth…” P18 “when he was so ill, I mean, it’s not like a choice. Would you like a bag of platelets? It’s like you need a bag of platelets now.” BC1 “I feel like my husband could usually tell when - like if his crit was really low, he could usually tell or if his platelets were low enough that he would need a transfusion, likely he’d be bruising or bleeding. So it was obviously helpful to get that when he needed it. But there were so many times where it was like well, you had the chemo on whatever day, so you have to come in to get the labs to see if you need a transfusion. And it just felt like a waste of time honestly. And he got a ton of transfusions, so obviously it helped.” BC2 “I think it [transfusions] added to the quality of life…I mean, my husband would be - you know, he’d be pretty logy and then he’d get the transfusions and it’d perk him up. He was good - much better.” BC5 “We always thought they [transfusions] were positive. On the days that he got the transfusions, we would always plan a big dinner that night because he’d have more energy. So that would be a night we’d get together and have like a little mini party…it gave him strength so we looked at it positively. BC8
Standard elements of hospice and other services have high utility for patients with blood cancers	“Well, getting back to the list, I prioritized the top two - home health aide and visiting nurse. I’m lucky enough that I don’t need either of those right now. But I get the sense everyone here is married or was married. I’m not. And so, it’s going to come a time when I’ll be relying on services like that.” P6 “I put down access to transfusions [as a high priority service], simply because sometimes it’s just simply a necessity.” P11 “In my case, my mom takes care of me. I can’t do housework. I can’t cook. I can’t clean. I can’t go to stores, so I can’t grocery shop. I can’t - so I see her tiring and tiring and tiring. And the level of stress of dealing with her daughter having leukemia is just - and she doesn’t get a break. I was looking at the respite care. That would be good if she could have a break.” P17 “I think it would be very helpful to talk about peer to peer whenever—to also on occasion be able to talk to someone who can empathize with what you’re going through. And I’m not talking about a medical professional. I’m talking about somebody who’s digging dirt while you’re digging dirt.” P3 “One downside of…creating a relationship is that the people that you’re dealing with are very fragile, as are you…There was a man…who had the same kind of transplant situation I did. And I would call him every now and then, but then…his health deteriorated, and he passed away.” P7 “She [social worker] would speak with him very candidly about his fears of dying and what was his biggest fear about dying” BC5
Hospice positively influences EOL care for patients with blood cancers	“I’m going to this hospice now for grief counseling…it is just like a beautiful place for families and the patients with their families.” BC3 “my husband was only on hospice one day, but it was amazing—it made the difference in our lives…so hospice I thought was awesome. And we would have had it, but you can’t have it while you’re having treatment. So - but even for one day, it was amazing.” BC5 “I had some wonderful [hospice] nurses. I do have to say that. The nurse that came was on a daily basis twice a day. She was very good. I loved her.” BC4 “We had hospice…and they did an awfully good job. They kept us at peace.” BC9 “I was just so scared because I was the one giving him [medications] because he was agitated and thrashing in the bed and he was just doing everything that he never had done before. And I kept thinking oh, my…I can’t do this. And I just kept thinking - they [hospice] kept saying to me, if you need us, call us. Well, what was I going to do, call them every hour because I was having a hard time giving him the morphine and all of that?…I was so overwhelmed that I didn’t know what to do.” BC4 “…It was kind of like falling off a cliff because you’ve been working with a great class A medical team for years, and the switch to hospice was just dramatic, and I think some helping with that transition would be helpful. Though hospice is good and what they do is great, it’s just such a big change from coming to Dana-Farber” BC7
Caregivers desire early goals of care discussions	“I don’t think the doctors talk about death, so the patients don’t talk about death. It’s the elephant in the room.” BC1 “Well, she was very candid. She would speak with him very candidly about his fears of dying and what was his biggest fear about dying…It’s the elephant in the room. There’s no point in not talking about it.” BC5 “We ended up finding a hospice. But I think I would have liked hospice discussed earlier in the process, because that last round of chemo really changed the way her mind was able to work and not work…if we had stopped [chemo] earlier, we would have gotten a better quality of life” BC6 “If I could have one thing to help, it would be to have a frank discussion of what’s important to the patient and what’s a top priority to still be able to do and what they really don’t want to go through and have that inform the treatment. It would be really nice to have a frank conversation early about like if you can’t walk, what makes your day good? What makes your day worth having? And if you’re not going to be able to able to have that day, how quick do you want it to be over.” BC6 “So, the whole approach to living with serious illness and the conversation - who is spearheading? Who is able to have conversations with the patient-any of us- about what matters to us now? In the context of people who are ill and getting sicker, who says so, what’s it worth to you now? What makes meaning for you at this moment in your illness?” P2 “Who do I turn to and ask for - excuse me - end-of-life type of help? Because that’s the situation I’m in right now. I’ve tried to do everything I can on my own as far as setting things up for my [family]. But I still have to contact a funeral home. I guess what I’m saying - I guess who to talk to - to somebody about the situation that I’m in that my time is limited. Where do I go? Who do I talk to? Who do I see?” P5