Background

Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their values, goals, and preferences regarding future medical care [1]. Advance care planning is associated with increased hospice use, decreased hospital admissions, reduced medical care costs, and increased patient satisfaction [2, 3]. To increase participation in advance care planning, national recommendations suggest raising public awareness of advance care planning and enabling people to think about future medical care planning in their own life situations [4,5,6]. One strategy to increase community engagement and promote advance care planning is through non-medical laypersons such as volunteers, community health navigators, and peer educators [7, 8].

Trained laypersons have been involved in supporting advance care planning among general older adult populations and specific populations such as ethnic minorities with multiple comorbidities, patients with end-stage renal disease, and patients with cancer [9,10,11]. These layperson-based programs suggest that individuals value the opportunity to exchange stories with peers who belong to their community group, are a similar age, or share similar experiences [12]. The involvement of volunteers in advance care planning conversations is a natural extension of the long-standing role volunteers have played in interdisciplinary hospice and palliative care teams [13,14,15].

Laypersons in hospice and palliative care settings serve in multiple capacities, including providing physical, spiritual, and emotional comfort to patients and family caregivers; assisting with information exchange and referral support (e.g., acting as a “bridge to the hospice”); socialization; and companionship [16,17,18,19]. Layperson-to-peer communication related to living with serious illness occurs in multiple settings including hospitals and clinics, palliative care programs, hospice programs, and community settings [7, 11, 20,21,22]. Given the formal and informal involvement of laypersons in communicating with individuals with serious illness, the specific experiences that non-medical laypersons have related to end-of-life communication, including advance care planning conversations, warrants close examination.

Systematic reviews that summarize layperson perspectives on communication related to end-of-life situations are lacking. To address this gap, we performed a meta-synthesis of qualitative studies to address the study question: “What are the perspectives of laypersons on communication with individuals with serious illness or advance care planning?” The intention of this study is to provide a rich description of how trained non-medical laypersons engage in layperson-to-peer conversations related to advance care planning or end of life situations, including palliative care and hospice care.

Methods

Design

This study is an interpretive thematic synthesis which uses a structured team-based meta-synthesis approach consistent with the ENTREQ standards. Specifically, we extracted salient information about each study, developed descriptive data-driven themes, and then synthesized themes through a process called reciprocal translation [23, 24]. We conducted a comprehensive search to identify articles on non-medical laypersons (i.e., volunteers, patient navigators, peer educators) in communication related to serious illness or advance care planning. We use the term “layperson” to streamline presentation of the results, while acknowledging differences in how various non-medical trained laypersons may be compensated, trained, and integrated into community or healthcare-based programs. We use the term “peer” in recognition that some of individuals that laypersons interacted with were in community-based settings and could be considered a peer, even if they did not personally know them. We also use the term “patient” in recognition that some individuals were in a healthcare context. We chose to perform a meta-synthesis because it provides a mechanism for exploring layperson-to-peer communication across a variety of settings from multiple studies. As a rigorous systematic interpretive study of a defined body of qualitative research, this process produces new knowledge beyond the individual studies and does not include quantitative studies. The analysis involves an integrative synthesis with the following assumptions: 1) the whole published study, not just participant quotations, is treated as qualitative data for interpretation; 2) a multidisciplinary analytic team adds context variation to study interpretation, and 3) when qualitative studies include similar findings, they can be amassed to draw larger and different interpretative meaning [23, 24].

Search strategy and study selection

A comprehensive search was performed by a medical librarian (K.D.) on March 20, 2017. Table 1 summarizes the key search terms used. Relevant publications were identified by searching the following databases: MEDLINE, PsycINFO, CINAHL, Cochrane Library, and AMED. No limiters were used for language or publication date. Publication/source types were limited in PsycINFO and CINAHL to exclude dissertations, theses, and book chapters to improve efficiency of searching and to ensure all included studies had been peer-reviewed and were easily discoverable. Appendix 1 describes the comprehensive search strategies for each database. Reference lists of included studies were hand-searched for additional relevant studies.

Table 1 Search strategy and study selection
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The inclusion and exclusion criteria are presented in Table 1. One author (H.L./J.D./A.B.) examined titles for general relevance to the study question of layperson perspectives on communication with individuals with serious illness or advance care planning. One author (J.D./A.B.) examined study abstracts for relevance, and then two authors (H.L. and J.D.) independently reviewed full studies based on the inclusion and exclusion criteria. The final inclusion of nine studies in the meta-synthesis was confirmed by the study team.

Quality appraisal

The quality appraisal is an important first step in a meta-synthesis and is a process of immersion into the data. It provides a deeper understanding of each article and helps the team determine the relevance and value of each study toward understanding key findings of the meta-synthesis. To assess study quality (Appendix 2), all articles were independently reviewed using the McMaster University tool [25] by at least two members of an multidisciplinary team including a nurse researcher (U.S.), a palliative care-trained geriatrician (H.L.), and two hospital-based physician researchers (C.J. and K.B.). The tool assesses for the presence or absence of 17 quality domains, including additional subdomains, for a total of 22 items that together address study rigor and other qualitative methodological issues. Any appraisal differences were resolved by consensus and input from another team member (S.J.) who has expertise in qualitative methods. To aid in comparing study quality, each domain received 0 points for No, 1 point for Yes. Not applicable (N/A) ratings were excluded from the total possible score. Scores for each domain were summed and divided by the total possible score (22 minus number of “N/A”) multiplied by 100 to provide an overall quality score with a possible range of 0 to 100%. The appraisal was not used to exclude articles.

Meta-synthesis

Using a meta-synthesis approach based on Thomas and Harden, [24] we extracted study aim, design, methods, type of layperson participants, and main findings of the original studies. Three authors (H.L., J.D., A.B.) reviewed all articles, extracted layperson quotations, and coded meaningful ideas within and across studies. We used an inductive approach for thematic analysis to identify themes and analyze similarities and differences across the studies [24]. In studies with mixed methods, the analysis focused on the qualitative portion of the study. The process was iterative, building consensus through visual mapping of broader domains, themes, and subthemes; naming and renaming; and contextualizing themes through team discussion and re-immersion into the articles to determine whether the emerging results resonated with the original data. Congruent with a meta-synthesis approach, we then used a reciprocal translation approach to create a reciprocal theme table that displayed the synthesized domains and themes alongside themes from the original studies [24]. We maintained an audit trail of decisions and presented and received feedback from multidisciplinary palliative care researchers and clinicians on the derived themes and primary data to contextualize our findings and maintain a high degree of rigor.

Results

Among 1566 titles identified with the initial search strategy, 690 were duplicates. One additional study was found by hand searching. Of 877 titles screened for general relevance to the study question, 694 titles were removed. Next, 183 abstracts were screened based on the inclusion criteria, and an additional 98 were removed. The full text of 85 articles were assessed, and 76 were excluded (two were not in English, seven were not full studies, 26 did not have discrete qualitative layperson data, and 41 did not address communication). Nine studies remained eligible for inclusion in the meta-synthesis as shown in the PRISMA diagram (Fig. 1) [26].

Fig. 1
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PRISMA flow diagram

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Table 2 shows study characteristics. Studies were conducted in the United Kingdom (UK) or the United States (US) and published between 2002 and 2017. Most studies used a qualitative descriptive approach with interviews, focus groups, or a combination. Two studies included a participatory action approach and one study used ethnography. Four studies specifically focused on communication related to advance care planning; whereas, five studies addressed the role of laypersons in communicating with patients who were hospitalized at the end-of-life, had palliative care needs, or were receiving hospice care. Studies included laypersons as volunteers, peer educators, or lay health navigators. Sample sizes ranged from 8 to 351 participants. The combined qualitative data from the nine studies represent a total of 692 laypersons.

Table 2 Studies of layperson perspectives on layperson-to-peer communication related to serious illness or advance care planning
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In the initial immersion into the data and assessment of study quality, study quality varied with overall quality scores ranging from 50 to 95% (Appendix 2). Across the nine studies, areas of poor quality were description of sampling methods; description of study site; identification of researchers’ biases; and confirmability of data to minimize bias.

Meta-synthesis of themes

Across nine studies, five major domains with themes and subthemes emerged related to laypersons’ involvement in communication related to end-of-life or advance care planning conversations. The major domains were 1) layperson-to-peer communication, focusing on the experience of talking with peers, 2) layperson-to-peer interpersonal interactions, focusing on the entire interaction between the layperson and peers, excluding communication-related issues, 3) personal impact on the layperson, 4) layperson contributions, and 5) layperson training. Figure 2 provides a graphical representation of the domains and associated themes. Table 3 presents each domain, related themes, and subthemes, as well as themes from the original studies to provide additional context.

Fig. 2
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Layperson perspectives on layperson-to-Peer communication related to training, experiences, and outcomes

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Table 3 Domains and themes exploring layperson perspectives about communication in serious illness or advance care planning
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I. Layperson-to-peer communication

The domain of layperson-to-peer communication includes six key themes: a) building rapport, b) talking about sensitive issues, c) listening and allowing silence, d) responding to patient and family emotions, e) communication facilitators, and f) communication barriers. These themes describe the layperson’s process of engaging in conversations with a seriously ill peer or initiating advance care planning conversations.

Laypersons focused on building rapport, which included building trust and developing relationships over time. They noted that longitudinal relationships over multiple encounters allowed for time and space to have unhurried discussions about sensitive subject matter. One volunteer described the process as follows,

“You just … need to hit the ball back over the net when you’re talking to someone… who has that disorder. You’re not seeking things, you’re not negotiating a peace treaty here, and you’re not making a business deal here... All you need to do is just hit the ball back over the net. They’re gonna hit it right back to you, you just hit it back” [27].

Moreover, laypersons noted that being perceived as a “peer” enhanced trust; “I think she sees me as a friend, also someone to maybe pass on some of her wisdom” [28]. Laypersons often felt most comfortable focusing on life-related subject matter through “life review” conversations.

Layperson-to-peer communication involved talking about sensitive issues, such as advance care planning, prognosis, death, family and caregiver issues, bereavement, and suicide. Laypersons were able to engage in these diverse conversation topics because of their training and by overcoming their own obstacles, such as initial avoidance of death-related subjects and lacking sufficient knowledge of a peer’s medical or social situation. When laypersons did initiate difficult conversations with a peer, it was ultimately met with a sense of relief. Through discussions with laypersons, hospice patients and loved ones often overcame denial of death and were able to address end-of-life practicalities, such as funeral planning and care of pets.

Listening and allowing silence was another theme of layperson communication. Some laypersons indicated that silence was anxiety-provoking because initially they worried about their contribution to the conversation and how the patient would perceive them. They reported that over time, they relinquished their self-concern and focused on the patient. They learned that listening, and being present or “in the moment,” were the greatest gifts they could give because patients often needed someone to listen without judgement.

Responding to patient and family emotions was another theme of layperson-to-peer communication. Laypersons perceived several negative emotions experienced by patients including fear, anger, regret, guilt, loss of dignity, and feeling like a burden to their families. Laypersons also described that families appeared to experience grief, fatigue, discouragement, feeling trapped, and feeling guilty for wanting the process to be over. Families were fearful of losing their loved one, fearful of not being present at the time of death, and concerned about the loved one’s pain and not being able to alleviate it. Laypersons wanted to learn how to sensitively and appropriately respond to these emotions.

Laypersons identified communication facilitators of layperson-to-peer communication, including physician endorsement and healthcare team involvement. For example, they felt that physician endorsement of layperson-led advance care planning conversations would help to reinforce its importance. They also felt that the support and involvement of healthcare team members helped when a patient’s questions surpassed the layperson’s role. One volunteer noted,

“If they start askin’ questions that I’m not sure of, then I’ll get a nurse. I’ll ask her questions, and I’ll come back to ‘em. I’ve had one that would ask about, well, how long would they keep feeding me before they would turn me off or whatever...I wasn’t sure, so I went and got an MD to answer the question for me” [11].

Laypersons also identified several communication barriers. Laypersons noted peer-related obstacles to conversations, including denial of death, lack of readiness, limited health literacy, and family conflicts. Specific barriers included physical or cognitive impairments, such as Parkinson’s disease or dementia, or the active dying process. In these situations, non-verbal communication became even more important when a patient’s disease made verbal communication difficult. Patients seemed to be reassured by the layperson’s presence. Specific to advance care planning conversations, laypersons noted health literacy limitations, including how the peers they were supporting seemed overwhelmed by medical information and jargon provided by the healthcare teams. At the broader community or healthcare system-level, a lack of time and space for advance care planning conversations, lack of widespread healthcare provider support, and cultural suspicion about talking about death and dying were the primary communication barriers. A volunteer in an advance care planning program stated, “I found it stressful with the pressure of completing an advance care planning quickly. It was like hitting a target” [29].

II. Layperson-to-peer interpersonal interactions

The second domain describes the nature of the layperson-to-peer interactions, going beyond communication. The themes included: a) discomfort with the peer’s situation, b) uncertainty of the layperson role, and c) interpersonal differences between layperson and peer. Discomfort with the peer’s situation encompassed witnessing symptoms and witnessing family distress. Laypersons described feeling helpless when observing patients’ symptoms and not knowing what to do. Some were upset when witnessing a patient’s distress over not being able to communicate, and felt unsure of how to help a patient with dementia. Witnessing a patient’s or family’s denial about death, hurtful family interactions, or emotional distress also caused discomfort. Laypersons identified these circumstances as opportunities for further training and desired clear preparation for encounters with distress, the dying process, and death.

A second theme that characterized interpersonal interactions was laypersons’ uncertainty of their role. This theme included uncertainty regarding responding to patient/family requests, gifts, and responding to symptoms. A commonly cited reason for this uncertainty was the position of being neither friend nor provider. Laypersons felt that they were in a nebulous in-between role. One volunteer described:

“[The patient] was in pain, and made it very clear that he wanted his morphine, which is an absolute…you know, no-no. I’m not supposed to be dispensing medication. It was, for me, a very uncomfortable and difficult situation to be in, ‘cause on the one hand, you don’t want to watch a human being suffer. On the other hand, it was made very clear to me that, you know, ‘this is something you don’t do!’” [30].

Laypersons recounted requests from patients and families that were inappropriate for this in-between role, such as dispensing pain medications, staying at the facility beyond their volunteer shift, or performing conspiratorial favors, such as throwing away an item that the patient didn’t want his family to see. This nebulous role also meant receiving gifts put them in an awkward position. If the layperson was a personal friend, they would have no problem receiving gifts. If they were a healthcare team member, they would have clear boundaries for declining gifts. Laypersons’ uncertainty also related to responding to symptoms or the peer’s self-care needs. They were uncertain about their role when advocating for the patient when concerns about a patient’s care or needs were raised. Laypersons often needed to navigate their role with the peer, family members, and healthcare team members, each of whom may have had different expectations of the layperson’s role and appropriate level of involvement.

Interpersonal differences between layperson and peer was a third theme and included the subthemes of cultural or religious differences and socioeconomic differences. Some laypersons perceived that religious differences could be a barrier. For example, some laypersons described feeling disconnected from a peer whose beliefs contradicted their own, while others admitted it was difficult to refrain from sharing their own beliefs. Awareness of these differences, however, did not necessarily cause a rift between the layperson and peer. One layperson recalled a patient with whom she connected despite their very different socioeconomic backgrounds:

“We instantly connected because we left out all the bullshit and just connected on a human level. And there’s a lot of female connection that we have, too. We connect as two women. We can talk about men, our husbands, what society expects of us as women, and what we want out of life. So she, I realized, shares the dreams and desires and aspirations that I have. We’re sisters under the skin” [28].

III. Personal impact on the layperson

The third domain is the personal impact on the layperson as they engaged in training, meeting peers with serious illness, or initiating advance care planning conversations. A key theme of this domain was building meaningful relationships, including learning from the peer, receiving gratitude, and experiencing loss. Laypersons describe “enriching” and “rewarding” experiences, gleaning wisdom from their patient as a “living history.” They felt rewarded by gratitude from the patient, which they felt accounted for the challenges of discussing death and dying. By forming strong connections with patients, however, they also experienced loss. Laypersons commented on the difficulty of letting go of friendships that had formed, stating:

“It does affect you at times when you know someone, you may be seeing them… [and] during two or three weeks you get to know them, and then they are gone” [20].

Personal impact on the layperson also included gaining awareness of end-of-life. Laypersons elaborated on this awareness in subthemes of personal reflection, personal application, and personal difficulty with mortality. Several laypersons commented that death became less daunting as a result of their experiences, especially when seen through the eyes of a peer with a positive outlook. They gained a better appreciation of how others approach end-of-life issues, and a deeper understanding of loss. They applied these lessons to their own lives, feeling better prepared to support those who had lost someone and how to advocate for their own wishes. One layperson commented that his experience had been a “re-education,” and he had become more compassionate as a result. Not all experiences were positive. Some laypersons discussed their own anxieties about mortality limited their ability to help patients.

IV. Layperson contributions

The fourth domain is layperson contributions and includes the themes of educating others and engaging in community outreach. Through effective training programs, laypersons discovered that they were able to educate their peers about end-of-life issues or advance care planning. They felt satisfaction when seeing the results of their hard work, such as completing a workbook for advance care planning with a peer. Some felt emboldened to engage their own families in end-of-life care discussions and even expanded their work into the wider community. For example, some trained peer educators hosted information sessions and meetings with local community stakeholders. They became further involved in local and national organizations aimed at increasing awareness of death and advance care planning.

V. Layperson training

The final domain is layperson training. Several studies described the processes of preparing laypersons to be peer navigators, educators, or hospice or hospital-based volunteers to support individuals with serious illnesses or to initiate advance care planning conversations. Layperson training focused on communication skills and provided laypersons with knowledge, experience, and confidence to address specific communication issues, as well as the broader role of supporting a peer. In addition to the content-focused suggestions that laypersons had related to the aforementioned domains, layperson input specific to training included strategies, instructional personnel, and materials. Suggestions for training strategies included experiential learning, meetings over time, supervision, and group-based learning. Laypersons preferred experiential learning, using real case examples and role playing, over computer-based “e-learning” or virtual classrooms. In terms of timing, they valued attending trainings that continued after starting the layperson role because they were able to learn from their real-life experiences, reflect between sessions, and receive on-going support from other laypersons. Structured supervision with feedback was another training need. Lastly, laypersons felt co-leading a group discussion related to advance care planning, rather than independently leading groups, helped peer education to go more smoothly.

A second theme related to layperson training was instructional personnel. Laypersons found that the most effective training was provided by experienced lay volunteers and healthcare professionals (e.g., palliative care providers), in addition to the program coordinators. The third training suggestion related to materials. Laypersons felt that simpler, more layperson-friendly materials were more effective than advance care planning printed materials that used complicated jargon. They also suggested that advance care planning materials for peers be based on stories or examples to make the concepts more understandable.

Discussion

Main findings of the study

This meta-synthesis addresses the study question: “What are the perspectives of laypersons on communication with individuals with serious illness or advance care planning?” We provide an integrated synthesis of the thoughts and experiences of non-medical laypersons as they communicate with peers experiencing serious illnesses, end-of-life care, or related to advance care planning conversations. In focusing on layperson-to-peer communication, this analysis describes commonalities in how trained laypersons approached and experienced conversations. It also highlights the variety of interactions, social or clinical context, benefits, and challenges of those conversations. The findings provide additional support to the role of laypersons in having meaningful conversations, though healthcare provider or physician endorsement of the layperson role may improve their effectiveness [8, 14]. Together with specific input from laypersons on their training needs, these findings can inform best practices for training and ongoing support systems for community or healthcare system-based programs that involve lay individuals. The synthesized results provide a foundation for the design and adaptation of peer-based programs that focus on communication skills and training.

This study offers insight into the benefits and challenges of laypersons’ engagement in advance care planning conversations. While other research studies focus on advance directive documentation, this study describes how engaging with seriously ill patients or peers in advance care planning conversations can be a challenging yet rewarding experience from the layperson’s perspective [31]. A future analysis should also include perspectives of the peer/patient and family caregivers [32]. Laypersons also shared similar sentiments regarding end-of-life communication: being with the patient and his/her loved ones and talking about death could be anxiety-provoking or uncomfortable, especially with inadequate training. Many laypersons and patients still found the experience to be positive. Laypersons specifically described increased awareness of end-of-life issues for themselves and, in turn, initiated conversations with families, friends, and sometimes their broader community. Thus, the investment of training a layperson for involvement in palliative care, hospice, or other programs to support seriously ill individuals may yield community-level benefits related to discussions about death and dying. Additionally, for programs that utilize older adult volunteers, this analysis aligns with a theoretical benefit between volunteering and successful aging through opportunities for communication [33, 34].

As a meta-synthesis, this study included individual studies that involved laypersons in highly varied settings, including hospices, hospitals, and community-based outreach programs to enhance advance care planning conversations. There were diverse types of non-health laypersons, including hospital volunteers, hospice volunteers, lay health navigators, and peer educators. The laypersons may have been part of a specific communication-based program or may have had opportunities for communication as part of their broader role. Although this meta-synthesis provides access to context variation within and across studies, the application of the key findings must be re-contextualized to the particular type of layperson, type of peer/patient, and program implementation setting. The laypersons’ suggestions on training, planning for program sustainability, and legal and ethical aspects of the involvement of laypersons in communication-based roles need to be adapted to regional or national policy considerations. The unique position of laypersons may require training measures specific to them because laypersons experienced uncertainty in their role, being neither a caregiver nor a health care professional. However, laypersons reported building and using communication skills such as building rapport, responding to patient and family emotions, and talking about sensitive issues which are skills also used by health care professionals. Because these skills are commonly used by health and social care professionals, there may be opportunities to adapt existing training models for use in layperson programs. Additionally, further study could evaluate the potential benefit and challenges of shared training, at least in part, for health care providers and laypersons in communication skills for a particular program. Given the significant difference in the role of a healthcare provider and a trained layperson, skills which may seem transferable between the two may still require different training methods and would require further evaluation.

Further research on the impact of laypersons in advance care planning or end-of-life conversations is warranted. This meta-synthesis focuses on the perspectives of laypersons, but future work should focus on the perspectives of patients, family members, and members of the healthcare team regarding the role and impact of laypersons. Prior to widespread adoption of laypersons in this role, specific evaluation of the safety and potential effectiveness of trained laypersons on communication and other meaningful person-centered outcomes is needed.

Limitations of the study

This study has several limitations. As a meta-synthesis, we did not have access to the original data sets, including complete transcripts or field notes, and were limited in our ability to interpret the linguistic and cultural context of the published quotations. Additionally, the focus on qualitative studies, inclusion criteria, and exclusion criteria resulted in unintentionally limiting the geographical location of the studies to the US and the UK. For example, in choosing to exclude grey literature such as dissertations, theses, and book chapters, we may have biased the findings toward established programs that had desire and ability to publish in peer-reviewed journals. The literature search yielded studies involving laypersons in palliative care or end-of-life settings conducted elsewhere, such as Canada and Uganda, but those studies did not specifically examine communication or use qualitative methods [18, 35]. Still, the majority of studies relating to volunteer or other layperson experiences are based in the US, Canada, or UK, making it difficult to broadly apply the findings of this meta-synthesis beyond these regions. Future work should include grey literature as this literature may have insights from additional settings, making the results of a meta-synthesis more broadly applicable. Additionally, the scope of this study did not include quantitative outcomes related to advance care planning programs involving trained laypersons [31]. An additional limitation to the study is that there was no layperson on the research team contributing to the analysis of themes.

Conclusions

The findings from layperson perspectives on communication with peers experiencing serious illness or related to advance care planning have practical implications. Since volunteers are more likely to commit to an activity that is personally satisfying, volunteer laypersons may constitute a reliable and cost-effective way to enhance advance care planning efforts and support individuals with palliative care needs, especially in community-based settings [35]. Training, and even paying, laypersons could be a viable alternative to training existing healthcare providers in specific advance care planning communication skills, especially in resource-limited settings. Moreover, because laypersons may have more time or common life factors on which to establish rapport, laypersons are uniquely positioned to engage in end-of-life conversations with peers experiencing serious illnesses.

In conclusion, we synthesized the perspectives of a diverse group of laypersons who were involved in communicating with individuals with serious illnesses or as part of advance care planning programs. Together the studies described the involvement of laypersons in meaningful conversations with their peers and outlined interpersonal interactions, personal impact, contributions, and training that laypersons experienced. Laypersons may complement and potentially enhance the work of healthcare providers in meeting the educational and psychosocial needs of individuals and their family caregivers in palliative care settings. Programs that involve laypersons should include training specifically for layperson-to-peer conversations related to the end-of-life period, as well as a mechanism for providing ongoing support to maximize and sustain the impact of the layperson’s role.