A Formative Mixed-Methods Study of Emotional Responsiveness in Telepalliative Care

Abstract

Background:

It is unknown whether telemedicine-delivered palliative care (tele-PC) supports emotionally responsive patient–clinician interactions.

Objectives:

We conducted a mixed-methods formative study at two academic medical centers in rural U.S. states to explore the acceptability, feasibility, and emotional responsiveness of tele-PC.

Design:

We assessed clinicians' emotional responsiveness through questionnaires, qualitative interviews, and video coding.

Results:

We completed 11 tele-PC consultations. Mean age was 71 years, 30% did not complete high school, 55% experienced at least moderate financial insecurity, and 2/3 rated their overall health poorly. All patients rated tele-PC as equal to, or better than, in-person PC at providing emotional support. There was a tendency toward higher positive and lower negative emotions following the consultation. Video coding identified 114 instances of patients expressing emotions, and clinicians detected and responded to 98% of these events.

Conclusion:

Tele-PC appears to support emotionally responsive patient–clinician interactions. A mixed-methods approach to evaluating tele-PC yields useful, complementary insights.

Introduction

Palliative care (PC) improves quality of life for people with serious illnesses.^1–3 However, access to PC in rural areas is limited.^4,5 Telemedicine-delivered PC (tele-PC) is one proposed solution to this problem,^6–8 and the coronavirus disease 2019 (COVID-19) pandemic has increased its use.^9–12

Several factors, however, may limit the feasibility, acceptability, and effectiveness of tele-PC, including limited technological proficiency among older patients,^6,13 limited broadband access in rural areas,¹⁴ and cognitive or physical limitations associated with serious illness. Furthermore, PC requires responsiveness to patients' emotions—a critical component of patient-centered communication,^15–17 especially for seriously ill patients.^18–22 However, little is known about the effectiveness of tele-PC in enabling emotionally responsive patient–clinician interactions. Few studies have addressed this question,²³ and the optimal methods of studying emotional responsiveness of tele-PC consultations remain unknown.

To address these knowledge gaps, we conducted a mixed-methods pilot study examining the feasibility, acceptability, and emotional responsiveness of tele-PC interactions involving seriously ill, home-bound patients. The study's overarching objective was to obtain preliminary evidence to guide more definitive future studies.

Methods

Study population and recruitment

We recruited seriously ill patients referred for initial PC consultations in two states: Maine and Vermont. Inclusion criteria included fluency in English and ability to provide informed consent. All participants gave informed consent and received $25 as incentive. This study was approved by the Maine Medical Center and Vermont Medical Center Institutional Review Boards.

Intervention

Between 6/2019 and 2/2020, a board-certified PC physician (n = 5) or nurse practitioner (n = 1) at each site conducted tele-PC consultations using two platforms—Health Recovery Solutions ClinicianConnect™ (n = 4) and Zoom™ (n = 7). Clinicians varied in age from 39 to 62, gender (4/6 women), and practice experience (1–14 years), and had no or moderate experience with tele-PC. Study personnel provided on-site facilitation and remained at patients' homes for the first few consults. However, their presence was perceived as distracting by participants, and the protocol was modified to have personnel leave the home. Consultations were video recorded and conducted according to usual practice.

Measures

Quantitative measures of feasibility, acceptability, and emotional responsiveness

Feasibility and acceptability measures were similar to those used in prior studies of palliative medicine interventions.^23,24 Feasibility was measured by counting the number of participants approached and consented, completed consultations, and technological interruptions in videorecordings.^23,24 Acceptability was measured by postconsultation questionnaires assessing patients' preferences for tele-PC and individual qualitative interviews.

Emotional responsiveness was assessed through questionnaires measuring: (1) patients' and clinicians' perceptions of emotional support during tele-PC, (2) patients' perceptions of feeling heard and understood,²⁵ and (3) patients' affective state before and during the consultation, assessed using a modified version of the Positive and Negative Affect Schedule (PANAS²⁶; Appendix A1). Emotional responsiveness was also assessed by structured coding of videorecorded tele-PC consultations. Two trained research assistants analyzed each videorecording using the Empathic Communication Coding System (ECCS)²⁷; to identify: (1) empathic opportunities (patient expressions of emotion or descriptions of disease progression),²⁸ and (2) providers' responses to empathic opportunities. Empathic opportunities were verbal, (e.g., a patient sharing they feel like a burden) nonverbal (e.g., facial expressions, body language), or both (Fig. 1). Coders met to compare analyses and adjudicate disagreements.

FIG. 1.

Emotional Responsiveness Outcomes. (a) The first figure displays the proportion of empathic opportunities that were identified through statements of emotions or illness-related challenges. The second figure shows the proportion of empathic opportunities that were verbal, nonverbal, or both. Verbal cues include patients sharing difficult news, such as “I feel like a burden to my family.” Nonverbal cues include sighing, looking away or frowning. (b) Displays clinicians' level of responsiveness to empathic opportunities. (c) Displays patients' self-reported emotional experience before and during the consultation, Emotions are split into negative and positive emotions with higher bars indicating greater intensity of those emotions. Dots and lines indicate individual participants. Bars represent mean and error bars indicate standard error of the mean.

Simple descriptive statistics were computed for all quantitative variables; study sample size precluded hypothesis testing.²⁹

Qualitative interview data

We conducted individual, semistructured interviews with patients, caregivers, and PC clinicians (Appendix A2). Interviews were audiorecorded, professionally transcribed, and analyzed using an inductive, constant comparative approach aimed at minimizing preconceptions and identifying key themes. Three investigators (R.N.H., E.C.A., P.K.J.H.) developed a preliminary codebook by independently reading three transcripts, categorizing participants' statements (open coding), and organizing emergent themes (axial coding).³⁰ Two investigators (R.N.H., E.C.A.) then applied the codebook to conduct software-assisted, line-by-line coding using MaxQDA,³¹ holding weekly meetings to discuss coding, identify new themes, and resolve coding disagreements.

Results

Feasibility and acceptability of tele-PC consultations

Eleven of 15 patients referred completed tele-PC consultations (73%). Mean age was 70.8 years; slightly more than half were women (Table 1), 30% did not complete high school, and 6/11 experienced at least moderate financial insecurity. Most had multiple serious comorbidities; 33% rated their health “good” or “very good.”

Table 1.

Patient Characteristics and Acceptability Outcomes from Telemedicine-Delivered Palliative Care

	Value
Patient characteristics
Consults completed	11
Vermont, N (%)	4/11 (36%)
Maine, N (%)	7/11 (64%)
Age (years), mean (SD)	70.8 (13.3)
Women, N (%)	6/11 (55%)
Primary English speaker, N (%)	11/11 (100%)
High school or above, N (%)	7/10 (70%)
Perceived income adequacy, N (%)	5/11 (45%)
Primary serious illness, N (%)
Heart failure	7/11 (64%)
Pulmonary disease	2/11 (18%)
Neurologic disease	1/11 (9.1%)
End-stage liver disease	1/11 (9.1%)
Multimorbidity, N (%)	9/11 (82%)
Good or very good rating of health,a N (%)	2/7 (29%)
Overall quality of life,b mean (SD)	5.6 (2.0)
Bothered by physical symptoms,c mean (SD)	3.0 (1.2)
Bothered by emotional symptoms,d mean (SD)	2.3 (1.1)
Prior palliative care encounter, N (%)	5/11 (45%)
Feasibility and acceptability
Consult duration, mean (SD)	55 minutes (15 minutes)
Consults with at least 1 technical interruption, (range)	5/11 (0–5)
Patient rates teleconsult overall as equal to, or better than, in-person visit,e N (%)	6/8 (75%)
Quantitative measures of emotional responsiveness
Patient felt completely heard and understood,f N (%)	3/8 (38%)
Patient rates teleconsult as equal to, or better than, in-person visit in providing emotional support,g N (%)	6/6 (100%)
Clinician rates teleconsult as equal to, or better than, in-person visit in providing emotional support,g N (%)	2/6 (33%)

N differed because some patients did not complete measures.

^a General health was assessed by asking patients an adapted version of question in National Health Interview Survey³⁶: “In general, would you say your health is?” (1 = Very Good, 2 = Good, 3 = Fair, 4 = Poor).

^b Overall quality of life assessed by asking patients: “Considering all parts of your life—physical, emotional, social, spiritual, and financial—over the past 2 days, how would you rate your quality of life?” (0 = Very bad, 10 = Excellent).³⁷

^c Bothered by physical symptoms assessed by asking patients: “Over the past week, how much have you been bothered by physical problems such as pain, upset stomach, or difficulty breathing?” (1 = Not at all, 5 = Extremely).³⁷

^d Bothered by emotional symptoms assessed by asking patients: “Over the past week, how much have you been bothered by emotional problems such as feeling anxious, depressed, irritable, or downhearted and blue?” (1 = Not at all, 5 = Extremely).³⁷

^e Patients' overall perceptions of tele-PC consult was assessed by a novel question asking patients: “How would you compare having a conversation with the palliative care clinician using TeleConsult compared with an in-person conversation?” (1 = TeleConsult much better, 5 = Office visit much better).

^f Felt heard and understood assessed by asking patients “Thinking about the TeleConsult conversation yesterday, how much did you feel heard and understood by the palliative care clinician?” (1 = Not at all, 5 = Completely).^25,37,38

^g Patients' and clinicians' perceptions of emotional support in tele-PC consult was assessed by novel questions asking: “Compared with an in-person conversation, how effective was the TeleConsult at giving you [the patient] the emotional support you [felt the patient] needed?” (1 = TeleConsult much better, 5 = Office visit much better).

SD, standard deviation.

Mean duration of the 10 successfully recorded consults was 55 minutes (standard deviation 15, ranging from 41 to 90 minutes). One encounter was not recorded due to technical problems, and one was conducted over the phone because video connection was unsuccessful. Five of 11 consultations had at least 1 technical issue, and 1 had 5 disruptions due to connectivity problems. Three-quarters of patients (6/8) rated the teleconsult as equal to, or better than, an in-person visit.

Emotional responsiveness of tele-PC consultations

Overall, negative emotions decreased while positive emotions increased following the consultation (Fig. 1c); the small sample precluded testing for statistical significance.²⁹ Thirty-eight percent of patients reported feeling ‘completely’ heard and understood. All patients rated the teleconsult as equal to, or better than, an in-person visit at providing emotional support; however, only one-third of clinicians gave a similarly positive rating (Table 1).

Coding of video recordings using the ECCS identified 114 empathic opportunities. Most empathic opportunities were expressed verbally and nonverbally by the patient (88%). Clinicians responded to almost all empathic opportunities (98%; 112/114). Coders showed high agreement on type of physician response; differences requiring adjudication occurred in 12% of coding decisions. The most common coded response was “pursuit” (43/114) (e.g., the clinician explicitly acknowledged and pursued the topic by asking questions or offering advice or support). The next most frequent response was “confirmation” (31/114) [e.g., the clinician explicitly acknowledged the legitimacy of the emotion (Fig. 1a)].

Qualitative interview findings

Identified advantages of tele-PC included improved access to care, reduced preparation for visits, and added value of video. Disadvantages included technical interruptions, other interruptions, and negative impact of seeing oneself. Moderating factors included computer literacy and size of the tablet screen used for the consults. Clinicians identified several clinician strategies for recovering from technological issues, including humor (Table 2).

Table 2.

Themes and Illustrative Quotes from Qualitative Interviews (N = 14)

Feasibility and acceptability of tele-PC consultation
Advantages/pros
Improved access to care	Well for me, it's hard for me to get into the doctor's. It's an hour away. And until just recently I had an old vehicle, which we had no heat in and the tires are bald. So, during the winter it is very difficult to get in and see the doctor. And then they get angry that you schedule an appointment 3 or 4 months in advance because doctors are just so booked, and then it snows that day or something and then you've got to schedule in another 3 or 4 months. (Patient 3)
	My mother wouldn't have participated if she had had to leave home. She's comfortable here. And I think she only agreed to this because we could stay here and do this. (Caregiver for Patient 2)
Reduced preparation for visits	But just the absolute ordeal, and it sounds ridiculous I know, but it takes me 45 minutes usually, just to get out of this house … and you've gotta change [the oxygen tank], … How do I get them down to the car? It just is so much easier to dial a phone (Patient 4)
Enhanced efficiency of visits	And [telehealth is] different than if you were sitting in the office because there are too many other things in the office to distract you. But when you're looking right at the screen she's right there (Patient 1).
Use of video	I feel lucky that I can at least see patients … I think [video is] better than the phone. (Clinician 4)
Disadvantages/cons
Technical interruptions	Well we froze a couple of times. But we just waited a few minutes and it came back (Patient 1)
Other interruptions	I really feel badly because I know her time is important too. I have difficulty trying to focus on what she was trying to say to me with all this stuff going on around me. The stuff with trying to fix the equipment and the oxygen guy coming in. And he's got this cart, clang, clang, clang. It's very loud. A lot of activity. People at the door I wasn't anticipating. (Patient 4)
Seeing self	I was very much aware of the way I was looking the whole time. And how old I am looking. So, it would distract me. (Patient 3)
Moderating factors
Computer literacy	I do [have worries about using the computer] because I'm not very good with it and I don't use a computer a lot (Patient 3).
Size of screen	I think the telehealth tablet is very small. I think if it was … larger, it might not have been quite so intimidating. Because the tablet is really small. (Caregiver for Patient 2)
Clinician strategies	Interviewer: And did you have any strategies for like recovering with a patient after a technical glitch? Clinician: Yeah, just humor usually. Or, I think just relating, like, “Hey, we're in the same boat, just is sort of weird for both of us.” So I felt like just instead of, -like it's a shared experience. So that's a good way to recover. (Clinician 2)
Emotion responsiveness in tele-PC visit
Conversation process
Turn taking	Interviewer: Do you have difficulties with turn taking? Clinician: Yes. … It's hard to remember because I continue to have that over Zoom. I think that's part of the body language thing, is just, you can't really read when people are going to talk. Same with on phone conversations, quite as well, and you don't know the person. So when you're in person you can sort of judge from their body language and how the conversation is going better. But it's definitely hard over the phone and over Zoom. It's still happening all the time. (Clinician 5)
Use of humor	I also, I use a lot of humor in in-person encounters to kind of sort of check to see that we're all on the same page. And I don't probably do that as much in telehealth encounters. (Clinician 3)
Silence	And I think that the other big piece that allows for silence that I mentioned. You can certainly do that through a computer screen. But it gets trickier because then I worry that they wonder like, oh is there a glitch? Did we lose connection? Why are they so quiet? (Clinician 5)
Body language and gestures	Well for one thing, I use my hands a lot. And that doesn't show, just your face. I really don't know. I really don't know what it is. It just seems a little bit, -maybe I'm just a little bit old fashioned, wanting to be right there, right in front. (Patient 5)
Eye contact	I think I get more out of it talking in person than I do on computer. … That's just me. It's the way I was brought up. Always look at the person face-to-face, eye-to-eye. (Patient 6)
Touch	I think a lot of it probably depends on practice style and how hands-on you are. So, I'm kind of a hugger. So, I do miss being able to hug my patients. (Clinician 4)
Conversation content
Facilitating the consult	I think that the biggest change honestly, for me, is that I find it more difficult to kind of control the sort of pace of the conversation and the flow. I find the conversation turn-taking or interrupting patients to be more challenging. It just feels more abrasive to me over telehealth than it does in person. And so because of that, if you have a more talkative patient, I find that they can go on for quite a while. And you end up spending the time in their sort of train of thought rather than what you need to know to help them with whatever medical decision-making or improving their disease or prognostic understanding. And so that I think ends up impacting what you cover in the conversation if that makes sense. It's like you just have less ability to direct what happens, I find. (Clinician 3)
Talking about death	Clinician: No, I think that sometimes in person you can get a better sense of if it's okay to jump into a tougher conversation because body language and facial expressions… But I can see holding back and little bit more, because you can't read the language as well, you might not take the opportunity to say something that, -often you'll judge whether the person is ready to talk about. Interviewer: Can you give me an example? Clinician: Yeah, definitely like what we call the “D word.” Like we're talking about death. Sometimes you judge whether they're ready for you to say that word or not. I always try to say it, but I definitely feel like using body language is something I use a lot to tell if they're ready. Or if it's going to burn the bridge or not sort of. Because sometimes that word is helpful and helps people feel relieved or more open so they can talk more openly. Sometimes they pull back. So I don't know that I used it in any of those interviews, actually. I might have. But I feel like in person I know I use it. (Clinician 1)
Emotional support
Comfort with conversation and setting	I think the tablet made it a little more uncomfortable for her because she doesn't understand how it all works. So, if we had been in a doctor's office or if the doctor had been here talking to her face-to-face, I think it would have been a little more comfortable for her, just because she finds all this computing stuff kind of unnerving. (Caregiver of patient 2)
	Yeah, because I think … he feels more comfortable here to say everything right out that's bothering him, or that he thinks is b, -you know. Than being in the doctor's office. I actually think that's probably so with nearly everybody. You're sitting in your chair. Even though you can see them you'll probably feel more at home so that you can speak more freely. (Caregiver of Patient 5)
	I also think, so if you're having a prognostic conversation and the prognosis is not good, maybe it's nice to be in your home environment. Maybe it's nice to be in a familiar setting and not in a cold sterile exam room. And you have, like I have a lot of patients who have support animals. And I know they're allowed to bring them in, but some people they're not certified support animals and they're just like, their cat is very comforting to them. Or whatever animal it is. But just being able to be in your recliner with your cat, with your favorite blanket, in your home environment. And to potentially be able to have support people who might not be able to be there otherwise is a big deal. I think it makes a difference. So, I don't think it's worse. It doesn't feel, -to me it feels in some ways less cold than having to have that conversation in an exam room with, that's cold with the big fluorescent lights. And the smell of sanitizer all around you. (Clinician 4)
Empathic communication	[Telehealth was] A cold way to be interacting on a very sensitive subject. But like I said, she was very compassionate and she helped get through that. And also the fact that I'd never met her before. That was a little hard at first to open up and talk to her about things that are really important to me, or that are hard for me to deal with. (Patient 3)
	Interviewer: Did you feel like she [the doctor] cared about you? Patient: Absolutely Interviewer: And what gave you that impression? How did she demonstrate that? Patient: The warmth in her voice. The not sharp. Sometimes when you ask your doctor something and they're trying to figure it out, they can be a little sharp. They don't mean to be, I don't think. At least that's what I tell myself. But they don't always have an answer for you, I guess. Maybe that's what I'm saying. But there's not that hearing. She's very into her job and you can tell. Just the way she talks about it. Just the way she asks the questions. She's not pounding you for an answer. She's willing to wait that extra second while you think about it. (Patient 1)
Decreased presence	It's like watching TV, it doesn't seem the same as being right there. (Patient 5)
	And I think that some patients, -I don't want to stereotype, but I've noticed this more with some of my more like gruff male patients, they actually tend to open up a bit more when it's not face-to-face. Like when you're not directly with them, for whatever reason. Just something I've noticed. So I think for some people it could actually be like a preferable mode of communication. (Clinician 4)

Three themes emerged regarding the emotional responsiveness of tele-PC consultations: conversation process, conversation content, and emotional support. With respect to conversation process, participants reported that tele-PC created challenges for turn-taking, use of humor, silence, interpretation of body language, eye contact and use of touch. One physician described how strategic use of silence to respond to emotions might be misinterpreted by patients as a technological problem. Regarding conversation content, clinicians identified several challenges: controlling the conversation, difficulty talking about death, providing emotional support, being comfortable with conversation and setting, providing empathic communication, and diminished presence.

Discussion

In this mixed-methods pilot study, we explored the feasibility, acceptability, and emotional responsiveness of tele-PC consultations. Consistent with past research, we obtained evidence suggesting that tele-PC consultations are feasible and acceptable to patients and clinicians.^{6,8,10,22,23,32} We also obtained initial evidence on the level of emotional responsiveness supported by tele-PC consultations.

Notably, most patients in our study—almost half of whom had prior in-person PC encounters—reported that tele-PC supported their emotional needs as well as, or better than, in-person consultations. This finding suggests that tele-PC consultations may be effective in meeting patients' emotional needs. Clinicians, in contrast, reported that tele-PC was less effective in supporting these needs. More research is needed to understand the reasons for these discordant perceptions. Possible explanations include clinicians' greater experience with in-person PC consultations, or patients' valuation of other beneficial aspects of tele-PC (e.g., ability to remain in their own home and/or avoid travel burdens).

Our novel videorecording data suggested a relatively high level of clinicians' responsiveness to empathic opportunities, compared with prior studies (all of which used recordings of in-person encounters) of both hospice clinicians²⁸ and oncologists.³³ Our small sample size limits more definitive conclusions, but these findings suggest that observational analysis using the ECCS is a promising approach to investigate emotional responsiveness. Furthermore, this approach may be applied to audio recordings alone, which may be more acceptable to patients.³⁴

This study had several limitations. The small sample size, opportunistic recruitment strategy, and lack of in-person PC consultation comparator group precludes definitive inferences about the comparative effectiveness of tele-PC. Research personnel were present in the participants' home during our first few consultations, which may have influenced the interactions between patient and clinician. Additionally, participants were recruited from two health care institutions within two Northeastern U.S. states that lack racial/ethnic diversity, limiting the generalizability of our findings.

Despite these limitations, our study provides preliminary evidence supporting the feasibility, acceptability, and potential value of tele-PC consultations, as well as methodological insights on investigating emotional responsiveness. Our preliminary findings suggest that tele-PC consultations are feasible, acceptable to seriously ill patients, and emotionally responsive, although several barriers to implementing and studying tele-PC in rural areas exist. Limited Internet access is a well-known barrier¹⁴ that rural states are working to address.³⁵ Furthermore, we also observed that some patients needed help using tele-PC technology, raising the need for patient and caregiver education¹³ as well as studies to clarify how patients' and clinicians' digital fluency might impact outcomes. Ultimately, our study endorses the value of further efforts to disseminate and implement tele-PC and to understand its strengths and limitations.

Appendix A1. Qualitative Interview Guide for Patients

Thank you so much for talking with me. I'd like to remind you that your participation in this interview is completely voluntary. You can choose not to answer any question that you don't wish to answer. You can also stop this interview at any time if you don't want to talk further.

• 1.First, I'd like to hear how you feel generally about technology and how it felt to use the computer to talk with the doctor.

Possible prompts:

1. Did it make it harder to communicate? If so, how?

2. Did it make it easier to communicate in any way? If so, how?

   • (i)Can you tell me about any benefits that you noticed to having the conversation in your own home?

3. Did it make it harder or easier to share your feelings with the doctor? If so, how? What kind of feelings?

4. Do you think you changed what you said or talked about because this is a research study? If so, how?

• 2.Now, I'd like to hear if you had any problems using the computer.

  1. Were there any problems with getting the connection to work?

  2. Did you have any trouble hearing or seeing the doctor?

• 3.I'd like to know how willing you would be to use the computer to talk with the doctor in the future.

  1. Do you think computers should be used more often, or even all the time, for patients like you? Why or why not?

     • (i)Would you prefer using the computer to talk to the doctor or going to an office to see the doctor?
     • (ii) How would you feel if you talked to a palliative care doctor from one of your primary care doctor's offices instead of from your home?
       • 1.How might it be helpful or harmful if you were to have your primary care doctor or cardiologist present during your conversation with the palliative care doctor?
       • 2.How would this compare to being able to do this from your own home?

  2. What can we do to make it easier for patients to use computers to talk to doctors?

  3. Would you be willing to talk to a doctor using the computer again? Why or why not?

• 4.During the study, you wore a wristband. I'd like to hear how you felt wearing this wristband.
• 5.Now, I'd like to ask about your talk with the palliative care doctor.

  1. What did you talk about?

  2. Did you learn anything new?

  3. Was it helpful? If so, how?

  4. Was it difficult? If so, how?

  5. Was there anything you wished the doctor asked you?

  6. Was there anything you wished you asked the doctor?

• 6.Did the doctor seem like he/she cared about you? What makes you say that?
• 7.Next, I'd like to ask you about your understanding of your illness.

  1. What do you understand about your illness?

  2. How serious do you believe things are?

  3. What have you been told?

  4. If patient has gotten prognostic information, probe:

     • (i)Who has told you this?
     • (ii) Did the palliative care doctor talk with you about this?
     • (iii) How did you feel getting this information?

  5. Do you wish your doctors talked more with you about what to expect in the future? Why or why not?

• 8.Finally, I'd like to ask you a few questions about the surveys you took as a part of this study.

  1. Were there any questions on the surveys that were difficult to answer? Which questions? What was difficult?

If patient is having difficulty answering, can probe – there were questions about what your life is like now and also questions about what the future holds with your illness. Were any of these more or less difficult to answer? Appendix 1b. Qualitative Interview Guide for Clinicians

• 1.I'd like to start by hearing how you felt about using the computer to do palliative medicine consultations?

  Possible prompts:

  1. Do you think it changed the conversations in any way, compared with a face-to-face conversation?

     • (i)Did it change the things you discussed during the consultation? If so, how?
       • 1.Do you think that using the computer made you focus more or less on symptoms versus goals of care?
       • 2.Did it change the amount of detail of information?
       • 3.Did it change the sequence of information, or how much time you spent?
       • 4.Did it make it harder or easier to talk about emotions or difficult topics?

  2. Are there things that were harder to discuss over the computer? What things?

  3. Are there things that were easier to discuss over the computer? What things?

  4. Did it make it harder to communicate? If so, how?

  5. Did it make it easier to communicate in any way? If so, how?

  6. Did it make it harder or easier to respond to the patient's emotions? If so, how? What kind of feelings?

  7. Do you think it changed the way you and the patient “took turns” talking during the conversation? If so, how?

  8. How did you feel generally about having prognostic conversations over the computer?

• 2.Next, I'd like to explore how your interactions with caregivers or family members went. Was there ever a caregiver or family member present during your consultations? If yes:

  1. Were you able to interact with the caregiver over telehealth?

     • (i)How was the interaction different over telehealth than it may have been in person?
• 3.Last, I'd like to hear about technical problems during any of your consultations.

  1. Do you remember having times when it was difficult to establish a connection?

  2. Did you have times when you had trouble hearing or seeing the patient? The caregiver?

  3. When you did have technical difficulties, how did you recover with the patient?

• 4.Finally, I'd like to know how willing you would be to use the computer to talk with patients in the future.

  1. Do you think telehealth should be used more often? Why or why not?

  2. What can we do to make it easier to use telehealth for patient visits?

Appendix A2: Additional Methodological Details

We recruited seriously ill patients referred for initial or follow-up PC consultations at two clinical sites in two rural states: Maine Medical Center (Portland, ME) and the University of Vermont Medical Center (Burlington, VT). Inclusion criteria included fluency in English and ability to provide informed consent. Patients recruited in Maine had a primary diagnosis of heart failure and were receiving home visiting nursing services. These patients were identified by one of three sources: (1) referral by home visiting nurses; (2) referral by an inpatient PC team for outpatient tele-PC follow-up; or (3) referral by an outpatient advanced heart failure cardiologist. Once referred, patients were given information by their home-care nurse and were contacted by a member of the study staff, who explained the study. Patients in Vermont were eligible if they were receiving local home health PC nursing services or previously participated in a consultation with a specialty PC physician or advanced practice provider.

Tele-PC Consultations were conducted using a tablet and videoconferencing software (Health Recovery Solutions ClinicianConnect or Zoom).

Several patient characteristics were collected through questionnaires and medical record review: age, gender, education, income, health status, global quality of life and symptom burden, serious illness diagnoses, and prior history of in-person PC encounters.

The Positive and Negative Affect Schedule (PANAS) was modified to include the following 20 emotion adjectives. Positive items: joyful, cheerful, happy, lively, proud, hopeful, serene, confident, content, and determined. Negative items: miserable, mad, afraid, scared, sad, disappointed, surprised, guilty, lonely, and anxious. Positive and negative emotion scores were created by calculating the mean of 10 positive and 10 negative emotion adjectives. Before the consultation, participants were asked, “indicate to what extent you feel this way currently.” After the consultation participants were asked, “indicate to what extent you felt this way during the consultation.” The Likert scale response options ranged from 1 = “Not At All” to 7 = “Extremely.”

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Funding Information

This research was supported by a pilot grant through U54 GM115516 from the National Institutes of Health for the Northern New England Clinical and Translational Research network. Additional support was provided by the National Center for Advancing Translational Sciences, National Institutes of Health, Grant Number KL2TR002545.

Author Disclosure Statement

All authors of this article directly contributed to the final product; they have no conflicts of interest to disclose.