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Table 3 Domains and themes exploring layperson perspectives about communication in serious illness or advance care planning

From: Perceptions of trained laypersons in end-of-life or advance care planning conversations: a qualitative meta-synthesis

Derived domains, themes and subthemes

Theme from primary study (# refers to Table 2)

Exemplar layperson quotations for each subtheme (# refers to Table 2)

Domain 1. Layperson-to-peer communication

 Building rapport (Subthemes: Building trust; Developing relationships over time)

Benefits as an advance care planning: Positive interactions (5); Difficult communication: Volunteer’s role (6); Navigator-level facilitators to advance care planning (8)

Of course, all of these patients have a relationship with me. Have rapport with me. I have seen them several times previously before I bring it up, so they know who I am and what I look like. They trust me. (8)

I’ll explain the type of services I can offer. The first time I may just mention it and tell them that one of the things that we can offer is advance care planning and we can talk about that another time if you’re more interested. (8)

 Talking about sensitive issues (Subthemes: Advance care planning; Prognosis; Death; Family/caregiver issues; Bereavement; Suicide)

Patient care and family concerns (1); Suicide and Hastening Death (1); End-of-Life Care Training Needs: Symptoms; Communication skills (2); Training encouraging action (3); The Patient is Alive (4); Personal Impact (5); Difficult communication: Denial; Dealing with pain/discomfort; Negative feelings of caregiver/family (6); Meaningful conversations: Life stories; death and spirituality; families and relationships; unfinished business (7); Patient-level barriers to advance care planning (8); Increased confidence in the topic (9)

Before [advance care planning] always felt like a major topic, you know ‘Oh how am I going to raise this?’ … [the training has] made it seem like something more natural to talk about, not to feel so awkward about discussing end-of-life matters and decisions … so that was really helpful. (9)

It was just…had I known how serious the prognosis was, I would have handled the situation much differently. So, you know, it is very difficult going in cold sometimes because you can end up really putting your foot in your mouth. (2)

It means that you have the opportunity to say to a family member who is quite distressed, ‘Actually, it is okay. This is all that’s happening’, and that can be the most powerful thing you can possibly say, to know that actually that’s okay. It is not anything out of the ordinary. (2, discussing dying)

The most meaningful conversation was with the mother and the young kids. The topic was her concerns and fears about her family. (7)

The most difficult thing seems to be business-type problems that need to be dealt with prior to or after the death. Families seem to find it an insensitive topic but usually recognize the necessity. (6)

She was so miserable, she wanted me to contact this Dr. Kevorkian, and so trying to talk her out of it without disparaging her wishes, or you know, disappointing her…she wanted to be right with God, but she was talking about having, you know, ending her own life. It was her discussion, and I didn’t promote it or anything. It was just a discussion to talk about, so I guess talking about that with somebody would be considered...kind of like I shouldn’t be doing it, but it interested me to talk to her about it, and she was a very open person. (1)

 Listening and allowing silence

End-of-Life Care Training Needs: Communication skills (2); Being There (4); Shared interests (5); Difficult communication: Physical/mental impairment (6); Meaningful conversations: Life Stories (7)

Most striking was how much he needed somebody to listen and not judge. (7)

 Responding to patient and family emotions

End-of-Life Care Training Needs: Communication skills (2); Difficult communication: Negative feelings (6)

[The patient] was in one of the rooms where you have to wear extra protective clothing as well, and I remember his children there. And they were really upset, and obviously me and him were having…He is telling me about times he went to Jamaica, and we’re talking, but I could see that his children were visibly upset. So I asked them if they wanted me to leave, and they were like no, no, no. To them, they are seeing their dad, someone who has looked after them, in an ill position, but I didn’t really know what to say to them. (2)

 Communication facilitators (Subthemes: Physician endorsement; Healthcare team involvement)

System-level facilitators to advance care planning (8)

I want to get into the clinics and I want to have the doctor say to the patient, ‘Your navigator is gonna come in, and they’re gonna cover all of this, including advance directive, and I think that everybody should get it done.’ (8)

 Communication barriers (Subthemes: Physical or cognitive limitations; Health literacy limitations; Limited time for advance care planning conversations; Cultural norms)

End-of-Life Care Training Needs: Communication Skills (2); It’s Not About Me (4); Personal Impact (5); Difficult communication: Physical/mental impairment; Religious differences (6); Patient-level barriers to advance care planning (8); System-level barriers and facilitators to advance care planning (8)

I think the hardest issue for me was when my lady couldn’t think of the word she wanted to say. She would get very frustrated and would cry. The best way I could get through this was to try to understand the concept of what she was talking about, then redirect the conversations. Sometimes I would use humor or we would listen to her favorite music. (6)

Sure, they’re anxious about whether or not they want to be on what they deem to be life-supportive equipment or whether they want a CPR. It kinda gets into the medical jargon. (8)

I found it stressful with the pressure of completing an advance care planning quickly. It was like hitting a target. (5)

It’s just hard to deliver given our time with the patient and actually space to actually have a private conversation with them. (8)

There’s a cultural suspicion about it … they call people who would discuss these things like death panels…I don’t know if that’s just our region or whatever…the difficulty is, I think, getting people to understand this is for their benefit. (8)

Domain 2: Layperson-to-peer interpersonal interactions

 Discomfort with peer’s situation (Subthemes: Witnessing symptoms; Witnessing family distress)

Patient care and family concerns (1); End-of-Life Care Training Needs: Symptoms; communication skills (2); Being There (4); Difficult communication: Denial; Dealing with pain and discomfort; Family issues (6)

I actually thought he was dead because he didn’t say anything for a while, and I was like ‘Oh no, what am I going to do’. Because he had really heaving breathing, I don’t know what was actually wrong with him. Air would get caught in him and it seemed like he was choking, so I told the nurse straight away. And she was like, ‘No, don’t worry.’ (2)

The family wouldn’t mention that the patient is dying in front of him and refused to discuss it. They were really in denial. I told them that he knows he is dying - they were shocked that I knew because the patient told me. This opened up dialogue between them. We all felt some relief. (6)

 Uncertainty of layperson role (Subtheme: Responding to patient/family requests; Gifts; Responding to symptoms)

Patient care and family concerns (1); Dilemmas about Gifts (1); Volunteer roles and boundaries (1); Difficult communication: Conflicts about patient care (6)

The person asked me if I would…If I would stay 8 h - for the day, and I told ‘em, “Now, that’s really not my job.” I said, “It’s a four-hour shift and I’ll be glad to do that, but 8 h…that’s really a lot.” (1)

…and I said, “I really can’t accept that.” She says, “You will hurt me if you don’t accept that.” So I thought, “What do I do? What do I do? It’s almost like a gift.” And I know it didn’t cost her anything, but that’s not the principle, and I said, “Do I give it away?” And she was very adamant that I accept it, and so I didn’t want to hurt her feelings, so I took it, right or wrong or indifferent… (1)

 Interpersonal differences between layperson and peer (Subthemes: Cultural/religious differences; Socioeconomic differences)

End-of-Life Care Training Needs: Understanding spiritual diversity (2); The Patient is Alive (4); Difficult communication: Religious differences (6)

The one that stood out for me the most is understanding spiritual, cultural, and environmental aspects of dying because nowadays we are living in a society where people are very religious. And even though there may be some patients that aren’t religious, you just have to respect what somebody believes. (2)

Domain 3: Personal impact on the layperson

 Building meaningful relationships (Subthemes: Learning from the peer; Receiving gratitude; Experiencing loss)

End-of-Life Care Training Needs: Self-care (2); The patient is alive; Being There (4); Benefits as an advance care planning volunteer: positive interactions; gratitude shown by peers; personal impact (5); Peer loss (6); Meaningful conversations: Shared interests; Gaining life lessons (7); Implications of being a peer educator (9)

Some things I don’t understand and he explains to me. He wants to be informed about the future. He’s not - he doesn’t stop living here in the present. He makes me understand that, too, the way he talks about politics. He’s all into that. I’m ashamed sometimes, I think, “Gosh, you know, I’m 23 and I don’t know that a bomb exploded here or there.” I think he keeps his life, very simple, day-to-day, to live in the moment. Maybe that’s a lesson I’m supposed to learn. (4)

The benefits are the gratitude for engaging with people to discuss such delicate issues at this very sensitive time in their lives. (5)

 Gaining awareness of end-of-life (Subthemes: Personal reflection; Personal application; Personal difficulty with mortality)

Training encouraging action; training enhancing awareness (3); It’s Not About Me (4); Difficult communication: Denial (6); Navigator-level barriers to advance care planning (8); Implications of being a peer educator (9)

The subject of dying and death is very delicate and how it is presented makes a difference. Over the months, the training we received has helped me become comfortable with the subject and, to a certain extent, more knowledgeable. (3)

It certainly brought home to me that I myself might find this situation occurring in my life and yet I’d not done anything about it. So it made me think a lot and it made me talk to my family about it. (3)

The difficulty is just dealing with somewhat your own - not issues, but your own reserves about this. (8)

Domain 4: Layperson contributions

 Educating others

Training encouraging action (3); Training enabling action (3);

I certainly didn’t feel fazed by any of the questions that we were asked and, fortunately, other people participating in the group also answered questions, it wasn’t just left to us as the leaders. (3)

Older people have always been good educators for younger people but with support we can educate each other on more serious issues like these. (3)

 Engaging in community outreach

Community engagement activities (9)

I’ll be quite frank, I certainly wouldn’t have got as involved as I am if I hadn’t done it (the training). After the last training day we had a meeting [and] said well okay, we’ll go and meet these people and see what they’re doing ... one thing we found was who knows what is out there as far as care provision. So we went and saw the hospice. We went and saw the PCT [Primary Health Care Trust]. We went and saw the Council. ... We literally pressed our PCT to get an (end-of-life) care strategy together because we went and saw them and we said okay we’re going to hold an information day and we will invite them to come and talk. So it pressurized them into having something ready. (9)

Domain 5: Layperson training

 Strategies (Subthemes: Experiential learning; Meetings over time; Supervision; Group-based learning)

Learning preferences (2); Program development process; Training encouraging action (3); Helpful additional supervision (5); Personal and emotional implications of being a peer educator (9)

If I know that it actually happens and this was the scenario that someone actually faced, it makes it seem more than just an exercise [sounds of agreement]. (2)

I think role play is probably one of the best ways. So do I, because it puts you on the spot. (2)

We’ve had a chance to take things in and think about it and then come to another meeting and that’s been helpful, I think. (3)

Actual structured supervision with feedback. (5)

 Instructional personnel

Learning preferences (2); Training encouraging action (3)

I think both [staff and volunteers], because you will get the professional experience or the professional knowledge of the situation and they might have been dealing with it for years, so their training, and then a bit from the volunteers because they are hands on also. So I think both is important. (2)

There were three groups. In each, there were 6–8 people from various backgrounds, and then two peer educators supported by a researcher. We rotated roles within the group, taking turns to be a facilitator, co-facilitator and observer. (3)

 Materials

Learning preferences (2); Reviewing training materials (3); Suggestions for programme improvement (5)

The material is too detailed for use in a peer education guide. Most people, myself included, would find it most daunting to prepare an advance directive after reading the book. The subject presentation is too complicated for a peer guide where simplicity should be of the essence. (3)

General information about what is available locally so we can signpost more effectively. (5)