End-of-life conversations about death and dying from volunteer perspectives: A qualitative study

Abstract

Objectives

Although often unrecognized, volunteers fulfill many essential roles in hospices and other end-of-life care settings. Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers and tidying bedsides. We explored end-of-life conversations about death and dying between hospice volunteers and terminally ill people, with a particular emphasis on any expressed desire to die. Our 2 research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients who are at the end-of-life?

Methods

We conducted semi-structured interviews using an interpretive phenomenological analysis. We recruited hospice volunteers from 4 hospices in Calgary, Edmonton, and Red Deer; 3 larger cities in the province of Alberta, Canada.

Results

We interviewed 12 participants to saturation. Four themes emerged: (1) trusting conversations about death and dying in the context of a safe place; (2) normalcy of conversations about death and dying; (3) building meaningful relationships; and (4) end-of-life conversations as a transformative experience. Our results emphasize the importance of preparing volunteers for conversations about death and dying, including the desire to die.

Significance of results

The safe environment of the hospice, the commitment to patient confidentiality, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be present without having formal care duties that need to be completed contribute to volunteers being able to participate in timely and needed conversations about death and dying, including the desire to die. In turn, hospice experiences and end-of-life conversations provide a transformative experience for volunteers.

Introduction

Volunteers fulfill many essential roles in end-of-life care settings (Delaloye et al. 2015; Luijkx and Schols 2009; Wilson et al. 2005). Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers to patients, tidying bedsides, telephone calling, writing, religious duties, helping patients eat meals, turning patients in bed, or helping with food preparation (Vanderstichelen et al. 2019; Wilson et al. 2005). Hospice volunteers may also provide companionship, friendship, and emotional support (e.g., a listening ear). In the context of end-of-life physical and psychological suffering, it is not unusual for hospice patients to talk to volunteers about their own death (Somes et al. 2018).

Death, even in privileged settings such as hospices and palliative care units in hospitals, is often still a taboo subject, as it is difficult to talk about it. Evidence has shown that health-care providers lack competencies to conduct conversations around death, terminal diagnoses, advanced end-of-life care planning, or patients’ possible desire to die (Crespo et al. 2021; Granek et al. 2013; Numico et al. 2009). Even if death occurs in a hospital or hospice, weeks or months of end-of-life care will normally have taken place in a home or another community setting such as a nursing home. It is therefore likely that these dying people will talk to family members, neighbors, and other laypeople, such as community organization volunteers, about their impending death, dying, and related matters such as a desire to die.

Not unsurprisingly, a systematic review highlighted that laypeople are frequently involved in sensitive end-of-life conversations (Somes et al. 2018). In any calm environment, death-related topics can emerge and be discussed. Our study explored end-of-life conversations between hospice volunteers and dying people about death and dying, including the desire to die, from the volunteer perspective. Additionally, we investigated the impact of these conversations on the volunteers. The research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients at the end-of-life?

Methods

Procedures

All methods were carried out in accordance with the principles of the Declaration of Helsinki. Research ethics approval for this study was received in advance of all research procedures from the University of Alberta’s Health Research Ethics Committee (Pro00087952). Forty-one hospice institutions were approached to gain organizational approval to approach volunteers for their participation in this study. The study was explained to hospice managers who were willing to take part in this study, and ultimately suggested volunteers for interviewing.

Participants

We recruited and interviewed volunteers from 4 hospices in Calgary, Edmonton, and Red Deer (3 cities in the Canadian province of Alberta). Purposive sampling was used to ensure ideal informants. The inclusion criteria were adult (18+ years old), fluent in English, current active hospice volunteer (inpatient or home), and a signed informed consent form after a discussion of the contents of a letter of information about the study had taken place. Thirteen volunteers were approached, and 12 participated to reach data saturation. No further hospices were then contacted to suggest volunteers for possible interviews. Data were collected over 1 spring and summer, at a time when Medical Assistance in Dying (MAiD) had just been made legal in Canada.

Data collection

The interview guide contained 3 core foci: (1) The nature of end-of-life conversations about death and dying; (2) Their experience with people expressing a desire to die; and (3) The impact of these conversations on them (see Table 1). Semi-structured interviews, based on these 3 questions, were conducted from March to May 2019. The participants were encouraged throughout each interview to add further information if they wished to do so and also to talk about what they were comfortable with sharing.

Table 1. Semi-structured interview guide

Participants chose a preferred time and location for their interview. Each interview was audio-recorded and then transcribed for data analysis. All interviews were performed by the same researcher, a person with experience in qualitative data collection and analysis.

Data analysis

Interpretative phenomenological analysis (IPA) (Smith et al. 2009), a qualitative approach designed to understand individual feelings and thoughts pertaining to the studied phenomenon, was used for this study. This approach was considered and found to be ideal for understanding individual experiences and thoughts about end-of-life conversations. IPA enabled us to focus on interpreting and revealing the implicit meanings of the participants’ experiences.

We analyzed the data from an initial descriptive approach to a more in-depth interpretative outlook. All transcriptions were read and manually coded line by line to identify significant statements and the meanings associated with them. Codes were assigned to each meaning that emerged. These codes were classified into categories based on conceptual similarity and ultimately grouped into subthemes and then themes. Triangulation within the research team corroborated the interpretation of the data. The methodological quality of the study was verified using the Standards for Reporting Qualitative Research (O’Brien et al. 2014). The interview transcripts were managed using Atlas.ti v.9 qualitative data analysis software.

All interviews were anonymized, and only 2 researchers had access to the recordings. We created a chart showing the categories that emerged from the studies (more descriptive level), and this served as the basis for developing themes from the interviews (more interpretative levels that encapsulated the categories found in different interviews).

Results

Of the twelve12 participants, all were female. Their differing sociodemographic characteristics are described in Table 2.

Table 2. Characteristics of the participants

Table 3. Main themes and categories

The data analysis identified 137 codes that were grouped into categories, and then classified into 4 themes: (1) Trusting conversations about death and dying in the context of a safe place; (2) Normalcy of conversations about death and dying; (3) Building meaningful relationships; and (4) End-of-life conversations as a transformative experience. Table 3 shows the categories and themes that emerged from the studies, and Table 4 contains representative quotations.

Table 4. Significant quotations

Theme 1. Trusting conversations about death and dying in the context of a safe place

All the volunteers considered that the special environment of a hospice generates trust and security that facilitates honest conversations with patients. Training to perform tasks as end-of-life volunteers and the unconditional support of hospice managers provided the volunteers with the necessary tools to manage their work, including having end-of-life conversations with patients who initiated such conversations. Some participants referred to the fact that outside the hospice context, it is difficult to have conversations about death or the end-of-life. The fact that death and dying are normalized in the hospice and that death is not seen as a taboo subject favored open conversations on these issues.

All participants affirmed that due to the commitment to confidentiality, the patients felt safe sharing intimate aspects of their lives with them. Hospice was a safe place in terms of allowing feelings to be aired without judgment.

Being previously unknown to the hospice patients was another communication facilitator. Wanting to protect already grieving family members led patients to avoid topics of conversation that could hurt them. Because volunteers were commonly seen as not being involved in direct care, patients could also think of them as people with whom they could discuss any topic without fear of the impact on the volunteers. Moreover, almost all participants advised that, in their experience, they thought the patients could be more open up with volunteers than with some health-care professionals.

Many discussions emphasized the normalization of death, which fostered an appropriate atmosphere for spontaneous end-of-life conversations between volunteers and hospice patients, as illustrated by the following quote:

We are allowing a safe place for someone to express their feelings of loss without any judgment, which I think for individuals who are having a hard time sharing with outside members who don’t understand that they can come here. […] People just get it because everybody is there because they can’t share with anybody else; that’s the issue, why people come to us. (P3)

All interviewees referred to their hospice as “my place to volunteer,” not only because of the support they received there but primarily because of the special mission of the hospice to help people in their last life moments. They could offer support, presence, and love through small gestures that convey dignity in these circumstances of maximum fragility, such as singing, offering warm sheets, or simply being silent and holding patients’ hands. This context of normalcy, naturality, and care contributed to patients viewing hospice as a safe place for serious end-of-life conversations where volunteers have time to “discover each person.” Volunteers experienced hospice as a place where patients are treated as people (as whole persons) who are loved and cared for as they deserve, where death is conceived of as a normal and expected part of life, and where life and death can be discussed naturally without making loved family members suffer. Hospice was also seen as a place where everyone can be her/himself beyond their illness.

Theme 2. Normalcy of conversations about death and dying

The volunteers stated that many topics of conversation about end-of-life concerns and impending death emerged during their volunteer work. One of the greatest concerns shared by patients was about how loved ones would carry on after they had died. Being a burden on loved ones was thus revealed as a major source of suffering for them. Not being present during significant future moments of their loved ones’ lives was another recurring concern among hospice patients. Yet, some hospice patients had no family members, or none who were obviously present, and the participants felt that these patients suffered from this lack. Moreover, some volunteers had patients who barely mentioned relatives throughout their hospice stay. The volunteers respected that they did not want to talk about their families, potentially due to unresolved or unresolvable family problems.

The conversations included many end-of-life topics that ranged from accepting death and being prepared to die, to fear of death. Conversations about faith, religion, and personal spiritual beliefs were also frequent. Some volunteers facilitated contact with a spiritual leader when a patient belonged to a religious group. Others encouraged patients to contemplate the meaning of their life. All listened attentively as they recognized that hospice patients would naturally talk about death and dying. When asked specifically whether they had experience with patients who had expressed a desire to die, 9 of the 12 interviewees answered yes, at least once. The expressed desire to die ranged from the natural acceptance of impending death and the desire to see loved ones who were already deceased to a direct request for death by euthanasia or assisted suicide (MAiD). The wish to hasten death was viewed by the hospice volunteers not only as a way of expressing end-of-life suffering or as a manifestation of hopelessness but also as a form of self-determination and control, as illustrated in the following quotation:

He was just ready; he just said, “I want this over. I am not going to make it out of this. Can I just go to sleep? Why can’t I just make it happen?” This was the conversation with him every day.… I don’t know. Maybe you are here for a reason, maybe you are here to talk to me, maybe you are here to figure my life out like … you know, we have lots of conversations. (P7)

This talking about the desire to die was experienced in different ways by the volunteers. For some, it was a difficult or sad occasion, while others said they felt comfortable with these conversations. For instance, 1 reported that these conversations made her feel privileged, which strengthened her sense of belonging to the hospice:

Maybe [she talked to her about her desire to die]… because she didn’t know me. I wasn’t part of her family. Maybe she just felt really free. And I don’t really know if she was asking me … necessarily why she wasn’t gone. But she was making sure that I realized that she was annoyed’ cause she was ready. I can almost imagine myself, ok, I’ve wasted a lot of time, come on, and I’m ready. I think that they are even more comfortable with someone maybe even more than with their family. […] Which makes me feel very privileged. (P5)

Theme 3. Building meaningful relationships

The most prominent communication facilitator was thought to be an empathetic and compassionate volunteer presence. The volunteers explained that investing time with the patients allowed them to establish a bond of trust that often ended in strong friendships. In explaining their tasks, many stated that their role sometimes consisted of simply “being there” unconditionally and with no self-serving end. They did not have professional care duties that had to be fulfilled. Another important category related to the power of presence was attentive listening. The volunteers reported that allowing silence, actively listening to patients without judging them, and letting them express themselves freely facilitated a high level of communication:

I think it’s really meaningful for me to just sit with people in silence sometimes and just kind of feel their presence to be really grounded in my own presence, and I feel like there is just the connection that happens in that silence, so I found that very meaningful. There was one case recently … with a patient that was really, really anxious, and he was crying out loud […]. A couple of the nurses asked me to sit with him, and so I did, and he was really anxious; he was breathing very rapidly, and I just sat with him. And I didn’t say very much, and then, all of a sudden – he had been kind of unresponsive – he sat up and looked at me and goes, “Who are you?” and […] I feel he was just kind of opening himself up in a way that he hasn’t for a while […] so he started to tell me about his life […]. He had just completely changed, and I was quite moved by just the change in his breaths come down and seemed more settled, and he was able to sleep […] I was moved by that. (P11)

Another common denominator was the importance of accommodating each person so that every individual could talk freely about what they wanted to express:

The conversations can just really be small talk … if I get the sense that they wanna have more of an in-depth conversation, I would sit with them, and I’d have a conversation about their life, their work, how their family is like, reminiscence about the past; sometimes they would like to talk about end-of-life, and so … yeah … it really depends on the situation. I usually let … the patients kind of dictate more, take the conversation; I don’t try to direct at all. (P11)

Finally, the volunteers thought that the hospice patients could simply be themselves with the volunteers. They did not have to act brave or be good patients. The patients could go beyond their role as patients to speak openly about death, with some even talking humorously about death and dying. They could be treated as ordinary people in this favorable context where they could open up and talk freely. This context of friendship, compassion, and permission to express and share thoughts and feelings about any topic including end-of-life concerns favored the building of deep personal relationships between patients and volunteers. Although it was not always easy to identify the limits of these relationships (3 participants stated that they had some moments of uncertainty about their role), the support of the hospice workers was stated as crucial in managing these situations. Building meaningful relationships was described as one of the most enriching experiences for a hospice volunteer.

Theme 4. End-of-life conversations as a transformative experience

Hospice volunteering and accompanying people who are engaged in end-of-life processes were described by the volunteers as a transformative experience for them, in which they had learned a lot about life and death, and it allowed them to consider their own future mortality and life situation. Moreover, it changed their perspective on important issues, as well as priorities (such as friendship, life objectives, and spending time with family and loved ones). Some of them also remembered and thus were struck by particular conversations that they had had with patients. These volunteers described such experiences as “an opportunity to embrace life.” Many quotations reflect these and other benefits of volunteering. For example, P12, who had worked in the oil and gas industry, stated, “I found that there was no sense of reality working downtown (at my oil and gas job), so I wanted to, I guess, get more in touch with what reality is, which is here [in the hospice helping dying people].”

Others affirmed that it was an honor and a gift to be a witness to the life and death of another. Accompanying someone in the last moments, even being present in the final dying process under a “no one dies alone” policy, was a unique experience.

Participants described this end-of-life process experience in terms of “beauty” or “privilege.” For instance, P1 said, “I was there just to comfort him, but it was a very moving experience, and he did it [died] with such ahh … [takes time to think] beauty; it was amazing.” Volunteers also affirmed their learning through their hospice work; P7 said, “I’ve got a whole different perspective on that from him. I learned a lot from him.”

Some volunteers affirmed that the death of a hospice patient, when there was a certain relationship, was a personal loss for them. In these cases, hospice professionals supported the volunteers in handling these difficult situations, both in advance of the death and afterward when the volunteers were grieving.

Three of the volunteers reported hearing explicit requests by patients of a wish for help to end their lives or hasten their death. Ultimately, 2 of the hospice volunteers’ patients died of their illness, before Medical Assistance in Dying (MAiD) had become legal in Canada. The remaining volunteer accompanied a patient who had asked for MAiD and then died of it, after it had become legal and available in Canada for those who qualify. None of the volunteers experienced moral distress or other concerns in talking with patients about their wish to hasten death, nor were the volunteers uncomfortable talking about this or any other end-of-life topics. All subjects discussed were relevant to the patients, so they were considered acceptable and worthwhile topics of conversation.

Discussion

This study explored end-of-life conversations between hospice volunteers and dying people about death and dying, including an expressed desire to die, from the volunteer perspective. We also explored the impact of these conversations on the volunteers.

The first theme, trusting conversations in the context of a safe place, showed, in the terminology of Wong et al. (2013), that contextual influences generate certain outcomes. This explains that in terms of our research question on the nature of end-of-life conversations, many participants alluded to the “hospice” context as a safe space where the presence and “free” work of volunteers and recognition of the special humanity and dignity promoted by the hospice philosophy favored the emergence of conversations about the end-of-life.

We learned from the hospice volunteers, in line with some other studies (Somes et al. 2018), that the patients perceived them as peers and that they had time for “unhurried conversations,” which facilitated openness to spontaneous, confident, and insightful end-of-life conversations.

This study provides valuable additional information, however, on end-of-life topics of conversation that occur between volunteers and hospice patients. To our knowledge, this is the first study to address the experience of volunteers with patients who express a wish to die. Consistent with the framework proposed by Schroepfer et al. (2009), the volunteers identified different intentions in patients’ expression of this wish. Most volunteers said that conversations about wishing to die occurred naturally within the framework of impending death and thus were an accepted reality. As previous studies have revealed, the participants carried out routine tasks of hospice volunteers (Bloomer and Walshe 2020), but one of the most important actions reported by all volunteers in our study and others (Dodd et al. 2018) was just being present, listening to and to some extent participating in any talks about the end-of-life.

In keeping with a previously proposed death wish taxonomy (Ohnsorge et al. 2014; Rodríguez-Prat et al. 2017), we identified various meanings of the wish to hasten death. One of the main identified meanings is when suffering is intense, the patient wants it to end. This wish may not be a genuine desire to die (nor suicidal ideation) but rather an illustration of suffering that has not been addressed (Kremeike et al. 2018).

Another identified meaning of the wish to hasten death is to end the suffering of others, such as beloved family members who were already grieving in advance of the death. Other qualitative studies have similarly described this desire to avoid being a burden to others as a trigger for a wish to hasten death (McPherson et al. 2007; Rodríguez‐Prat et al. 2019). In our study, volunteers often self-identified as crucial in allowing patients to see that their life – in line with logotherapy (Frankl 1991) – still had meaning, not only for themselves but also for their loved ones.

Only 3 of the 12 participants had heard explicit requests for death or a wish to hasten death. In 2 of these cases, the patients who verbalized this wish died because of their illness, as the decriminalization of MAiD in Canada had not yet come into effect, and these requests were made before that date. However, after MAiD was legalized in Canada, 1 of the volunteers had a patient who requested and received MAiD. In this case, the participant had developed a close relationship with this patient, and her death had a great impact on the volunteer. However, most participants indicated that they had developed close relationships with a number of patients, and so all deaths of these people had a great impact on them.

Another crucial finding of our study was that volunteers built meaningful relationships with patients. This was done in part through discussions but also by silence. “Just listening” may be one of the greatest gifts that one person can give another. Unlike the findings of Somes et al. (2018), none of our participants reported anguish or distress when sitting in silence with hospice patients. Rather, they considered listening by being silent as being valuable work.

Similar to the results of other studies, volunteers did not find it upsetting to talk about the desire to die (Crespo et al. 2021). They stated that this type of conversation could arise naturally due to the relationship of trust between them and more broadly at the hospice, where it was clear to everyone that the patients were dying. In no case was this conversation or the desire to die uncomfortable for either party. A study that compared the fear of death among paid staff and volunteers found that this fear was lower in volunteers (Zana et al. 2020). This difference can be explained by the altruistic motivation of volunteers in comparison to the professional duties of staff. Not having as much direct and daily contact with the burden of the disease and with death through full or part-time employment may also explain why the experience and well-being of volunteers could be described as better (Zana et al. 2020).

We also found beneficial and transformative effects of end-of-life conversations on the volunteers themselves. Similarly, in a study by Beasley et al. (2015), some participants referenced how participating in a hospice, and specifically talking with dying people, helped them grow personally. Other researchers mentioned that being with these people had helped volunteers in their own personal process of mourning or regarding their own mortality (Claxton-Oldfield et al. 2007).

One limitation of our study is that only female volunteers were interviewed. However, this circumstance is understandable, as Bloomer and Walshe (2020) found most people who perform this type of service are women. We were unable to recruit any male volunteers, in large part because so few are hospice volunteers. Their experiences and perspectives are therefore not identified, a gap for future research to address. Another limitation is that only English-speaking volunteers in 1 Canadian province were recruited. Other volunteers elsewhere may have different feelings and experiences.

Regardless, this study demonstrates the value of end-of-life volunteers as well as their need for initial and ongoing in-service education so they can perform a range of needed and highly valuable end-of-life duties. End-of-life conversations should be viewed as a major duty of hospice volunteers. In our study, all participants received an initial training that also included how to approach end-of-life conversations. Hospice volunteers felt prepared to participate in these conversations and valued the support received from hospice managers and health professionals if they did not know what to do. However, it is important to note that hospice volunteers in Canada are not to initiate conversations with patients about MAiD (Canadian Hospice Palliative Care Association 2017). Thus, it is necessary for them, not only to learn how to manage conversations about an eventual desire to die but to know the boundaries of what is permitted for them as volunteers. In this vein, in-service training about what is the desire to die, and what this desire can mean should be mandatory for those in contact (volunteers, health-care professionals, and family members) with people nearing the end-of-life.

Future research should address the value of silence and active listening, as well as helpful conversations. Moreover, research should determine what is most helpful when dying people are at odds with or not in touch with their families. Many people, when dying, have some form of conflict with their families (Wilson et al. 2020).

Conclusions

End-of-life volunteers clearly do essential work in hospices. The safe environment of the hospice, the volunteers’ commitment to care and confidentiality in relation to hospice patients, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be there contribute to volunteers having the potential to conduct timely and helpful conversations about death and the dying process, including the desire to die. These experiences and end-of-life conversations are also transformative for volunteers.