Major themes and subthemes
| Themes . | Exemplar quote . |
|---|---|
| 1. SICs can be conducted via telehealth | |
| Telehealth may increase patient comfort | Oncology clinician 1: “I think it’s a great idea to have – I think it’s good that patients are in their home environment to have that conversation. I think it’s probably a more comfortable environment for them to be in and have that kind of conversation. I think it’s a perfect visit to do over telehealth because you don’t need a physical exam.” |
| Oncology clinician 2: “I think it probably has a place and I think that whether that’s – again, because of time issues in the clinic, it probably would open up some additional time venues where this could be done…I think that can be valuable because most of these conversations do not require a physical exam, so I think they can be accomplished by telehealth.” | |
| Oncology clinician 11: “They might feel safer doing it over Zoom because they might feel like they have more control, and they are not sitting there in that stark exam room having this depressing conversation. They are in their own home with their wife on the couch next to them. So, I think it’s a good thing to do.” | |
| Oncology clinician 16: “I think that it could be a useful tool and it could engage more people beyond just the patient too, which could be helpful.” | |
| Palliative care clinician 8: “I’ve realized it’s a really good resource. I don’t think it should be used as the sole resource with all of our patients, but certainly there’s a time and place for telehealth. A lot of times our folks are very weak or symptomatic. For some of my folks, before telehealth, it would be all that they could do to muster up the energy and come in and then they’d be shot for the rest of the day and that’s not fair.” | |
| Patient 8: “Thank heavens for Zoom and the phone because I’m in my own little bubble here because I have to be careful with this leukemia. I can’t, I will not go in crowds. I will go to the store, but my big thing is not going in crowds because I don’t know who’s been vaccinated.” | |
| Caregiver 4: “I’ve been on several of the telehealth appointments…and without any other options during the COVID, it was great. It was great to be able to see a face of the person that’s caring for your spouse, and to be able to ask some questions as well, that sometimes it’s hard when you’re on the phone and you get cut off and all of that, so you could put a face to the name. They’ve all been positive experiences.” | |
| Telehealth may make interpretation of body language difficult | Oncology clinician 3: “If I’m doing it, I prefer to have it by video because I think that I kind of shaped my tone and my conversation topics based on a lot of what people’s expressions are, their body language, do they seem comfortable? Do they seem engaged?” |
| Palliative care clinician 3: “And at the same time it’s harder to pick up people’s body language a little bit. You know, there’s somebody off camera that’s giving them a look and I can’t see that.” | |
| Palliative care clinician 9: “I do think sometimes with telehealth and this allowing of multiple people to be involved, it can be overwhelming at times, I think another challenge is all of a sudden now you have 12 voices. All of those voices might not be on the same page and maybe they don’t even all carry the same weight, but you’re now kind of dealing with all of these voices.” | |
| Patient 2: “That was kind of scary to me because to me, when you see a doctor, I think a lot of times they can kind of read, for one, your appearance, maybe your skin color or your speech or your attitude, and I felt as if you’re doing that virtually and everything, there might be something missing.” | |
| Patient 4: “You can tell by somebody’s eyes, their gestures or something like that if they’re uncomfortable with something. They may want to talk about something they’re very hesitant about, you can see that in somebody and feel it, but you can’t do that by computer or phone.” | |
| Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table. And the other thing is with masks. With telehealth, you don’t need a mask. So, you’re able to see the full face, the expressions, where with a mask on it’s tough to tell expressions.” | |
| 2. Older patients have limited experience with technology but are willing and able to learn | |
| Patients’ current experience with technology is limited | Oncology clinician 5: “The other one is sometimes they need somebody who is young, you know, more, you know, in touch with technology to make the arrangements and then things just don’t work.” |
| Oncology clinician 6: “This is an older patient population and doing these things over the phone is not optimal. Many of our patients don’t have video so that’s not always helpful. So, that has become a barrier.” | |
| Oncology clinician 9: “The technical difficulties that tend to arise, especially in that demographic. They’re not the most tech savvy…it would be frustrating for the patient to try and have this sensitive of a conversation if there were technical issues.” | |
| Palliative care clinician 7: “I think it may be a little bit more difficult on the phone and I understand that technology may be a barrier for the geriatric population.” | |
| Patient 5: “I’m pushing 77 and I do computer, but I don’t have a smart phone. Now as things traveled on the road and the people that are now in their 40s and 50s get to be 70 and 80, they canprobably handle it, but I think our generation right at the moment, that is probably the most critical in health care are not quite as savvy. I think people now that are like myself, my age group, and so on are just kind of ‘Well, I guess I can.’” | |
| Patient 10: “I’m 73, technology is a mystery to me.” | |
| Caregiver 3: “You’re also going to be dealing with people that are much older that have no clue how to navigate this. If you were to tell my mom right now that her only option in dealing with this is to do it via Zoom or via Teams meeting, she’d be like, ‘What the hell are you talking about?’” | |
| Patients are willing to learn how to use telehealth | Patient 6: “After I figured it out, it was good that I didn’t have to travel 3 hours to a follow-up. It was nice to be able to actually see him and him see me and to actually see his expressions. I think it’s awesome.” |
| Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table.” | |
| 3. Patients feel that SICs will help them better understand their AML or MDS diagnosis and prognosis | |
| Patients should be prepared to have a SIC | Oncology clinician 6: “It’s usually the very early stuff that I find is the most tricky to walk. Not always, but in general that’s when tensions are highest and the relationship is the newest and they’re trying to sort, you know, they’re engaging you, you’re trying to get through it.” |
| Oncology clinician 16: “I think patients need to understand what they’re about to discuss.” | |
| Patient 5: “There’s also things like these documents, I can sit down on my desk and read them over and absorb a lot more from the document than having them throw it at me in the hospital bed.” | |
| Patient 13: “The conversations, I think they’re valuable because it opens things up. You have a better understanding [of] what to expect and what to do. There’s no questions because you know what to do, because I have told you, or I have indicated that this is what I want done or not done depending on the situation.” | |
| Patient 13: “I want to know what’s going on. What are we talking about here? What’s the long-term prognosis? What’s the short-term prognosis? I want to know these things. I want to be prepared. I want to know what to expect.” | |
| Caregiver 4: “And again, huge communication. It helps so much, it helps that patient, it helps the caregiver, and I’m sure it helps the health care team when they know they’ve got everybody, you try to all be on the same page, the best that you can. I think that’s only going to help the patient going forward.” | |
| Positivity is important when communicating with patients about their illness | Oncology clinician 14: “I think early on I can send a message of not distrust, but skepticism. I think you can potentially fracture that partnership that you have with the patients.” |
| Patient 4: “Don’t look at the patient like, ‘you’re going to die.’ That’s too bad. I’m here to help you. Let’s walk through this together.” | |
| Patient 6: “You need to keep in these papers to try to have a positive outlook – don’t give up, don’t let this consume you, understand your illness or the diagnosis, but you’ve got to work at it.” | |
| Patient 10: “I think you shouldn’t take it for granted that if a person is ill, they don’t want to hear ‘worried’ or ‘days,’ ‘months;’ they want the truth, but they want to have it put to them in positive ways.” | |
| 4. SICs should be common and routine, not extraordinary | |
| All clinicians should be comfortable having SICs with patients | Oncology clinician 4: “Trying to adopt a more uniform approach…would be a great place to start.” |
| Oncology clinician 7: “Universal application across the provider group.” | |
| Patient 6: “You have to portray when you talk to somebody about it, this is very scary to me because you’re talking about all this right now and I’m trying to get better and trying to go into remission and all that. But it needs to be portrayed as in the event that, rather than you need to do this now, because.” | |
| Patient 8: “Not at the end, when a person is so sick that they can’t speak. When they’re more healthy than down the road when they might not be able to answer those questions that should be done early on.” | |
| Palliative care clinician 4: “When patients are getting roomed, part of rooming them is the nurse checks whether they have a health care proxy on file, and we’ll flag anyone who doesn’t have one. Or a MOLST on file, and it flags people who don’t have one. Finding ways to routinely bring to the attention of the person that something hasn’t gotten done or needs to be done.” | |
| Palliative care clinician 6: “If it’s part of our culture and part of our workflow to know what matters most to the patient, every visit every time, then the stuff that’s already been done doesn’t get missed. But in our system, we do have a pretty standard way to document and track ACP. Again, it’s just a matter of, do you bother to access it? Do you know what’s there?” | |
| Palliative care clinician 7: “Even with a guide like this, I think it would be hard, but I’m thinking about more of the medical oncologists. This should not be a specialty skill. This should be a general skill that everybody has, talking about ACP and goals. It shouldn’t be special. It should just be good care, not special care.” | |
| Patients want their oncologist to lead their SIC | Patient 13: “The doctor would be the one because he has all the facts, and he has the background and expertise. I prefer a doctor that is going to be very direct with you about it and on the other side is not going to make you feel bad about having to do it.” |
| Themes . | Exemplar quote . |
|---|---|
| 1. SICs can be conducted via telehealth | |
| Telehealth may increase patient comfort | Oncology clinician 1: “I think it’s a great idea to have – I think it’s good that patients are in their home environment to have that conversation. I think it’s probably a more comfortable environment for them to be in and have that kind of conversation. I think it’s a perfect visit to do over telehealth because you don’t need a physical exam.” |
| Oncology clinician 2: “I think it probably has a place and I think that whether that’s – again, because of time issues in the clinic, it probably would open up some additional time venues where this could be done…I think that can be valuable because most of these conversations do not require a physical exam, so I think they can be accomplished by telehealth.” | |
| Oncology clinician 11: “They might feel safer doing it over Zoom because they might feel like they have more control, and they are not sitting there in that stark exam room having this depressing conversation. They are in their own home with their wife on the couch next to them. So, I think it’s a good thing to do.” | |
| Oncology clinician 16: “I think that it could be a useful tool and it could engage more people beyond just the patient too, which could be helpful.” | |
| Palliative care clinician 8: “I’ve realized it’s a really good resource. I don’t think it should be used as the sole resource with all of our patients, but certainly there’s a time and place for telehealth. A lot of times our folks are very weak or symptomatic. For some of my folks, before telehealth, it would be all that they could do to muster up the energy and come in and then they’d be shot for the rest of the day and that’s not fair.” | |
| Patient 8: “Thank heavens for Zoom and the phone because I’m in my own little bubble here because I have to be careful with this leukemia. I can’t, I will not go in crowds. I will go to the store, but my big thing is not going in crowds because I don’t know who’s been vaccinated.” | |
| Caregiver 4: “I’ve been on several of the telehealth appointments…and without any other options during the COVID, it was great. It was great to be able to see a face of the person that’s caring for your spouse, and to be able to ask some questions as well, that sometimes it’s hard when you’re on the phone and you get cut off and all of that, so you could put a face to the name. They’ve all been positive experiences.” | |
| Telehealth may make interpretation of body language difficult | Oncology clinician 3: “If I’m doing it, I prefer to have it by video because I think that I kind of shaped my tone and my conversation topics based on a lot of what people’s expressions are, their body language, do they seem comfortable? Do they seem engaged?” |
| Palliative care clinician 3: “And at the same time it’s harder to pick up people’s body language a little bit. You know, there’s somebody off camera that’s giving them a look and I can’t see that.” | |
| Palliative care clinician 9: “I do think sometimes with telehealth and this allowing of multiple people to be involved, it can be overwhelming at times, I think another challenge is all of a sudden now you have 12 voices. All of those voices might not be on the same page and maybe they don’t even all carry the same weight, but you’re now kind of dealing with all of these voices.” | |
| Patient 2: “That was kind of scary to me because to me, when you see a doctor, I think a lot of times they can kind of read, for one, your appearance, maybe your skin color or your speech or your attitude, and I felt as if you’re doing that virtually and everything, there might be something missing.” | |
| Patient 4: “You can tell by somebody’s eyes, their gestures or something like that if they’re uncomfortable with something. They may want to talk about something they’re very hesitant about, you can see that in somebody and feel it, but you can’t do that by computer or phone.” | |
| Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table. And the other thing is with masks. With telehealth, you don’t need a mask. So, you’re able to see the full face, the expressions, where with a mask on it’s tough to tell expressions.” | |
| 2. Older patients have limited experience with technology but are willing and able to learn | |
| Patients’ current experience with technology is limited | Oncology clinician 5: “The other one is sometimes they need somebody who is young, you know, more, you know, in touch with technology to make the arrangements and then things just don’t work.” |
| Oncology clinician 6: “This is an older patient population and doing these things over the phone is not optimal. Many of our patients don’t have video so that’s not always helpful. So, that has become a barrier.” | |
| Oncology clinician 9: “The technical difficulties that tend to arise, especially in that demographic. They’re not the most tech savvy…it would be frustrating for the patient to try and have this sensitive of a conversation if there were technical issues.” | |
| Palliative care clinician 7: “I think it may be a little bit more difficult on the phone and I understand that technology may be a barrier for the geriatric population.” | |
| Patient 5: “I’m pushing 77 and I do computer, but I don’t have a smart phone. Now as things traveled on the road and the people that are now in their 40s and 50s get to be 70 and 80, they canprobably handle it, but I think our generation right at the moment, that is probably the most critical in health care are not quite as savvy. I think people now that are like myself, my age group, and so on are just kind of ‘Well, I guess I can.’” | |
| Patient 10: “I’m 73, technology is a mystery to me.” | |
| Caregiver 3: “You’re also going to be dealing with people that are much older that have no clue how to navigate this. If you were to tell my mom right now that her only option in dealing with this is to do it via Zoom or via Teams meeting, she’d be like, ‘What the hell are you talking about?’” | |
| Patients are willing to learn how to use telehealth | Patient 6: “After I figured it out, it was good that I didn’t have to travel 3 hours to a follow-up. It was nice to be able to actually see him and him see me and to actually see his expressions. I think it’s awesome.” |
| Patient 12: “If it had to be a conversation as things are progressing, I think I could accomplish as much telehealth-wise as being across the room or across the table.” | |
| 3. Patients feel that SICs will help them better understand their AML or MDS diagnosis and prognosis | |
| Patients should be prepared to have a SIC | Oncology clinician 6: “It’s usually the very early stuff that I find is the most tricky to walk. Not always, but in general that’s when tensions are highest and the relationship is the newest and they’re trying to sort, you know, they’re engaging you, you’re trying to get through it.” |
| Oncology clinician 16: “I think patients need to understand what they’re about to discuss.” | |
| Patient 5: “There’s also things like these documents, I can sit down on my desk and read them over and absorb a lot more from the document than having them throw it at me in the hospital bed.” | |
| Patient 13: “The conversations, I think they’re valuable because it opens things up. You have a better understanding [of] what to expect and what to do. There’s no questions because you know what to do, because I have told you, or I have indicated that this is what I want done or not done depending on the situation.” | |
| Patient 13: “I want to know what’s going on. What are we talking about here? What’s the long-term prognosis? What’s the short-term prognosis? I want to know these things. I want to be prepared. I want to know what to expect.” | |
| Caregiver 4: “And again, huge communication. It helps so much, it helps that patient, it helps the caregiver, and I’m sure it helps the health care team when they know they’ve got everybody, you try to all be on the same page, the best that you can. I think that’s only going to help the patient going forward.” | |
| Positivity is important when communicating with patients about their illness | Oncology clinician 14: “I think early on I can send a message of not distrust, but skepticism. I think you can potentially fracture that partnership that you have with the patients.” |
| Patient 4: “Don’t look at the patient like, ‘you’re going to die.’ That’s too bad. I’m here to help you. Let’s walk through this together.” | |
| Patient 6: “You need to keep in these papers to try to have a positive outlook – don’t give up, don’t let this consume you, understand your illness or the diagnosis, but you’ve got to work at it.” | |
| Patient 10: “I think you shouldn’t take it for granted that if a person is ill, they don’t want to hear ‘worried’ or ‘days,’ ‘months;’ they want the truth, but they want to have it put to them in positive ways.” | |
| 4. SICs should be common and routine, not extraordinary | |
| All clinicians should be comfortable having SICs with patients | Oncology clinician 4: “Trying to adopt a more uniform approach…would be a great place to start.” |
| Oncology clinician 7: “Universal application across the provider group.” | |
| Patient 6: “You have to portray when you talk to somebody about it, this is very scary to me because you’re talking about all this right now and I’m trying to get better and trying to go into remission and all that. But it needs to be portrayed as in the event that, rather than you need to do this now, because.” | |
| Patient 8: “Not at the end, when a person is so sick that they can’t speak. When they’re more healthy than down the road when they might not be able to answer those questions that should be done early on.” | |
| Palliative care clinician 4: “When patients are getting roomed, part of rooming them is the nurse checks whether they have a health care proxy on file, and we’ll flag anyone who doesn’t have one. Or a MOLST on file, and it flags people who don’t have one. Finding ways to routinely bring to the attention of the person that something hasn’t gotten done or needs to be done.” | |
| Palliative care clinician 6: “If it’s part of our culture and part of our workflow to know what matters most to the patient, every visit every time, then the stuff that’s already been done doesn’t get missed. But in our system, we do have a pretty standard way to document and track ACP. Again, it’s just a matter of, do you bother to access it? Do you know what’s there?” | |
| Palliative care clinician 7: “Even with a guide like this, I think it would be hard, but I’m thinking about more of the medical oncologists. This should not be a specialty skill. This should be a general skill that everybody has, talking about ACP and goals. It shouldn’t be special. It should just be good care, not special care.” | |
| Patients want their oncologist to lead their SIC | Patient 13: “The doctor would be the one because he has all the facts, and he has the background and expertise. I prefer a doctor that is going to be very direct with you about it and on the other side is not going to make you feel bad about having to do it.” |
MOLST, medical order for life-sustaining treatment.