INTRODUCTION
The goal of this paper is to bring together the results of studies that have demonstrated how patients, and especially family caregivers, have benefited from the use of hospice palliative care volunteers, as well as how the volunteers themselves have benefited from their volunteer experiences. People tend to think of volunteers as being a source of support for the dying person only, forgetting that volunteer support extends just as much to the dying person's family members (or loved ones). As Weeks et al. (Reference Weeks, MacQuarrie and Bryanton2008) noted, “family caregivers do not often think of themselves as being the target of hospice palliative care interventions” (p. 86). This is a very important point to emphasize when promoting the value of hospice palliative care services, including the services of carefully selected and well-trained volunteers. Family caregivers devote a huge amount of time to caring for terminally ill loved ones, and receiving volunteer assistance with nonmedical care can help meet the needs of both the patient and family members. For an overview of the different kinds of support direct patient/family care volunteers can provide, see Claxton-Oldfield (in press).
Unfortunately, the offer of volunteer support is often rejected—“Why would I want a stranger coming to my house to help look after my terminally ill husband?” This is perhaps not an altogether surprising response, especially if people are not familiar with what a volunteer can do for them. Recent research suggests that there are many different reasons why the services of community-based hospice palliative care volunteers—volunteers who visit mostly in the dying person's own home—are underutilized in Canada, including not knowing about the volunteer program (“I didn't know there was such a program”), having enough support from family and friends already, and not wanting to hear the words “hospice” and “palliative” (Claxton-Oldfield & Marrison-Shaw, Reference Claxton-Oldfield and Marrison-Shaw2013). In addition, many healthcare professionals do not encourage their patients to take advantage of the support available from volunteers in their communities, often because they do not fully understand the role of the volunteer (e.g., “My patient doesn't want to sit around all day talking about his cancer”). Clearly, getting the word “out there” about who the volunteers are, the kind of training they receive, and what they can (and cannot) do for patients and their families is job number one.
Volunteers in Canada's community-based programs are available to provide support to dying persons in their own homes—the preferred place of death for most Canadians (Living Lessons, 2011). Unfortunately, for many reasons, it is not always possible for people to die at home. In some cases, family members may not be available to provide daily care to a loved one who wishes to die at home because they do not live close by or because they have too many other family responsibilities (e.g., working full time, raising young children) that prevent them from doing so. Other reasons why people might not be able to die at home include that the terminally ill person has no family, family members are not willing to provide care for the dying person at home, a lack of publicly funded home care, the fear of being a burden (e.g., emotionally, financially) on one's family members, and so on. In many cases, “the gap between preference [to die at home] and reality is the result of inadequate social and economic supports for terminally ill patients and their families” (Cairns & Ahmad, Reference Cairns and Ahmad2011, p. 1).
In many programs, community-based hospice palliative care volunteers in Canada can also provide their support in other care settings (e.g., hospital, nursing home). Large hospitals often have specialized palliative care units with a limited number of beds for terminally ill patients; these hospitals typically have their own pool of palliative care volunteers who are available to visit patients on the unit. Residential hospices in Canada also have their own volunteers who visit patients in the hospice and, in some cases, in the community as well (e.g., in patients' homes).
How Family Caregivers Benefit from the Use of Hospice Palliative Care Volunteers
For terminally ill persons who choose to die at home, hospice palliative care volunteers can make a real difference. They “bring unique skills and approaches to working with patients and families and in their role as regular and friendly visitors can often provide needed caring beyond the scope of the other hospice team members' contributions” (Dy et al., Reference Dy, Reder and McHale2003). The paid members of the hospice palliative care team simply do not have the same amount of time as volunteers do to visit with patients and families (Wilson et al., Reference Wilson, Justice and Thomas2005).
Weeks and coworkers interviewed 10 bereaved women who had utilized the services of a hospice palliative care volunteer while caring for their dying spouses and reported that “all of the women in this study had overwhelmingly positive experiences with the hospice palliative care volunteers” (Weeks et al., Reference Weeks, MacQuarrie and Bryanton2008, p. 88). Some of the specific ways in which the volunteers benefited family caregivers included occupying an “in-between” role (e.g., between husband and wife, between wife and other members of the family, and between the couple and the paid members of the hospice palliative care team), giving them emotional support (e.g., listening and being there), being available when needed (e.g., “just a phone call away”), and providing caregivers with a much-needed break from caring for their spouses.
In another Canadian study by Claxton-Oldfield et al. (Reference Claxton-Oldfield, Gosselin and Schmidt-Chamberlain2010), 22 family members responded to a brief survey designed to assess their satisfaction with the services provided by their deceased loved ones' volunteers. The focus of the survey was on how the volunteers had helped and supported them (the family caregivers) as well as their impressions of the volunteer. The results revealed that family members had a very positive impression of the volunteers, rating them highly on a number of personal characteristics (e.g., compassionate and caring, respectful, empathic and warm, good listener) and adding several of their own. The types of volunteer support that received the highest mean importance ratings included allowing them to take breaks from caregiving, providing then with emotional support, and spending time with them, echoing the findings of Weeks et al. (Reference Weeks, MacQuarrie and Bryanton2008). Additionally, Claxton-Oldfield et al. (Reference Claxton-Oldfield, Gosselin and Schmidt-Chamberlain2010) found that most family members felt that their volunteer respected their privacy (95%), was well trained (85%), and would recommend the volunteer service to others (95%). In terms of their overall satisfaction with the quality of support and care provided by their volunteer, family members gave it a mean rating of 8.6 out of 10.
Another study that directly examined the impact of hospice volunteers on patients' families was conducted in The Netherlands by Luijkx and Schols (Reference Luijkx and Schols2009) and employed a combination of focus groups, survey, individual interviews, and an internet panel. The 75-item survey they used focused on “the situation in which palliative care was given, the nature of the volunteer support provided, and family caregivers' evaluation of this support” (p. 33). In terms of overall satisfaction, family caregivers were very satisfied with the support provided by volunteers, giving it a mean satisfaction rating of 8.7 out of 10. The main kinds of support volunteers provided consisted of “being there” (e.g., giving time and attention to patients/family members, watching over patients at night). “Volunteers were particularly appreciated for their emotional support and a little less so (but still to a considerable degree) for their practical support” (Luijkx & Schols, Reference Luijkx and Schols2009, p. 35).
Jack and colleagues (Reference Jack, Kirton and Birakurtaki2011) examined the impact of palliative care volunteers in the developing African nation of Uganda. Community volunteer workers, as they are known, were trained to “identify and care for people needing palliative care in their own homes, offering support and advice to patients and their families” (p. 707), thereby acting as a “bridge to hospice” in rural communities. The positive impact of these volunteers on patients and their families in terms of practical help, physical care, and education and counseling was “widely stressed” by the patients, volunteers, and the hospice staff who participated in the study.
As can be seen from these few studies, volunteer support can make a real difference in the lives of both dying patients and the patients' family caregivers. There is even some evidence to suggest that hospice volunteers can actually increase how long terminally ill patients survive. Herbst-Damm and Kulik (Reference Herbst-Damm and Kulik2005) found that patients who received visits from hospice volunteers lived, on average, nearly 3 months (80 days) longer than those who were not visited by volunteers. It was inferred that the involvement of volunteers might have had both a direct effect on patients (e.g., strengthened their emotional well-being) and an indirect effect (e.g., decreased family members' burden of caring for their dying loved ones, which, in turn, enabled them to provide a better overall quality of care and support). Block and coworkers (Reference Block, Casarett and Spence2010) found that greater use of direct patient care volunteers was associated with higher levels of satisfaction with the quality of hospice services received, as rated by bereaved family members in the United States.
In addition to the empirical studies demonstrating families' appreciation for volunteer support (e.g., Claxton-Oldfield et al., Reference Claxton-Oldfield, Gosselin and Schmidt-Chamberlain2010), anecdotal evidence, in the form of cards and letters of thanks from family members, also show how much families valued the volunteers for their caring and compassionate support and for the void they were often able to fill (e.g., Gerber, Reference Gerber2013). As Brazil and Thomas (Reference Brazil and Thomas1995) noted, “The content of these letters [of thanks] consistently described the volunteers as providing support, comfort, empathy, and acceptance, augmenting volunteer and staff reports that volunteers contributed to the program by providing nonprofessional social support to patients and family members” (p. 42).
Promoting the positive impact that hospice palliative care volunteers can have on patients and their families may be helpful when it comes to “selling” the volunteer program to those (e.g., patients, families, and healthcare providers) who may not otherwise realize the benefits of utilizing a volunteer (Claxton-Oldfield & Marrison-Shaw, Reference Claxton-Oldfield and Marrison-Shaw2013). To summarize, the benefits for family caregivers include (but are not limited to):
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■ respite or breaks from their caregiving role
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■ emotional support (e.g., empathy, someone to listen to them)
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■ social support (i.e., someone to talk to)
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■ advocacy (i.e., someone to speak up for them or act as a link between them and the professional [paid] members of the hospice palliative care team)
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■ practical assistance (i.e., an extra pair of hands, someone to run errands for them)
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■ spiritual/religious support (if that is what they want)
These benefits can help family members better cope with the demands of caring for a dying loved one (i.e., help them manage their caregiving situation). Hospice palliative care volunteers can also provide bereavement support both before and after a patient's death. Following a death, bereavement support volunteers are often available to provide telephone support, in-person one-to-one support, and group support. For more information about the role of bereavement support volunteers, see Payne (Reference Payne2001).
How Hospice Palliative Care Volunteers Benefit from Their Work
Given the paucity of published research on patient and family caregivers' satisfaction specifically with hospice palliative care volunteer support, the remainder of this paper focuses on the benefits that volunteers receive from working with terminally ill patients and their families.
“I couldn't do that; I'm too sensitive.” “Isn't it depressing?” These are the types of comments people frequently make when asked if they would be interested in becoming a hospice palliative care volunteer. According to those who do it, however, volunteering in hospice palliative care is far from being depressing. In fact, most volunteers will tell you that it is one of the most important and rewarding things they have ever done and that they get far more out of volunteering than they ever give. Volunteering in hospice palliative care can be a transformative experience as volunteers come to realize the “gift” they have been blessed with by being able to accompany or “journey” with patients at the end of their lives. These gifts come in many forms, including meaningful conversations and lessons learned as patients open up to them and share life stories, discuss religious topics, and talk about death and what comes next (Planalp et al., Reference Planalp, Trost and Berry2011), personal growth (Andersson & Ohlen, Reference Andersson and Ohlen2005; Arnup, Reference Arnup2011; Guirguis-Younger & Grafanaki, Reference Guirguis-Younger and Grafanaki2008), gaining valuable life skills (e.g., Letizia et al., Reference Letizia, Zerby and Hammer2000), using the skills they (the volunteers) already have (Arnup, Reference Arnup2011), having the privilege of making a difference or positive contribution in the lives of others (Arnup, Reference Arnup2011; Phillips et al., Reference Phillips, Andrews and Hickman2013), enhanced self-esteem (Korda, Reference Korda1995), high levels of personal pride (Jack et al., Reference Jack, Kirton and Birakurtaki2012), forming deep, personal connections with patients and their families (Guirguis-Younger & Grafanaki, 2007), appreciating their own lives more (Arnup, Reference Arnup2011; Guirguis-Younger & Grafanaki, 2007), accepting death as an inevitable part of life and planning for their own death (Wittenberg-Lyles, Reference Wittenberg-Lyles2006), and being able to educate others (friends, family members) about death and dying based on their volunteer experiences (Wittenberg-Lyles, Reference Wittenberg-Lyles2006). It is no wonder that volunteers often say they get more out of their volunteer experiences than they give.
Claxton-Oldfield and Claxton-Oldfield (Reference Claxton-Oldfield and Claxton-Oldfield2007) interviewed 23 direct patient/family care volunteers in Canada in order to examine the impact that their volunteer experiences have had on their lives. Their findings suggest that volunteers rarely come out of this work unchanged. Most of the volunteers reported that they were different now from when they started volunteering in hospice palliative care (e.g., they had grown in some way, had learned how to keep things in perspective). In addition, most volunteers felt that their outlook on life had changed since starting volunteering (e.g., they were more accepting of death, they learned the importance of living one day at a time).
Hospice palliative care volunteers generally find their volunteer work highly satisfying (e.g., Black & Kovacs, Reference Black and Kovacs1996; Reference Black and Kovacs1999; Chevrier et al., Reference Chevrier, Steuer and MacKenzie1994). As Arnup (Reference Arnup2011) notes, volunteering in hospice palliative care changes volunteers: “more open, less judgmental, they [the volunteers] have learned the importance of living in the present moment, by sitting at the bedside of people who are dying” (p. 12). Highlighting the rewards of volunteering in hospice palliative care may be a powerful tool when it comes to recruiting new volunteers and keeping existing ones on board (Korda, Reference Korda1995). The benefits of volunteering include (but are not limited to):
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■ personal growth
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■ making a difference for patients and their families
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■ learning what is really important in life (i.e. to not “sweat the small stuff”)
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■ a greater acceptance (less fear) of death
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■ feeling connected to others (patients, families, and other members of the hospice palliative care team)
Using the services of a hospice palliative care volunteer and being a hospice palliative care volunteer is a win–win situation. The rewards go both ways—caring for people at the end of their lives is immensely rewarding (a great gift for volunteers), and volunteers can help family caregivers better cope with their loved one's illness and lessen the demands of caregiving (a great gift for patients and family caregivers). More needs to be done to promote the value of hospice volunteers to those who can benefit from their services (i.e., terminally ill patients and their families) and also to promote the importance and rewards of becoming a hospice palliative care volunteer. Everybody wins.
