Palliative Medicine 2005; 19: 602 !/609
Being a hospice volunteer
Birgit Andersson Institute of Nursing, Sahlgrenska Academy at Gothenburg University, Gothenburg and
Joakim Öhlén Institute of Nursing, Sahlgrenska Academy at Gothenburg University, Gothenburg and
Department of Nursing, Karolinska Institutet, Stockholm
The aim of this study was to obtain an understanding of what it means to be a hospice
volunteer in a country without a tradition of hospice or palliative volunteer care services.
Ten volunteers from three different hospices in Sweden were interviewed. Their
narratives were interpreted with a phenomenological hermeneutic method. Three themes
were disclosed: motives for becoming involved in hospices, encountering the hospice and
encountering the patient. The interpretations disclose a need for the volunteer to be
affirmed as a caring person and received in fellowship at the hospice. Positive encounters
with a hospice are closely related to personal growth. Volunteers feel rejected if their need
for meaning and for belonging to the hospice is not satisfied. This shows that hospices
need to set goals in terms of volunteer support, particularly regarding existential
issues following the encounter with the hospice and the patient. Palliative Medicine
2005; 19: 602 !/609
Key words: hermeneutics; hospice volunteer; palliative care; phenomenology; volunteering
Introduction and aim study into existential meanings of being a volunteer
within hospice or palliative care.
Previous research on volunteering in palliative care has, Volunteers are considered a unique resource in the
to a large extent, been concerned with issues of organiza- palliative care team, completing and enhancing the value
tion, such as economics, recruiting, education, the role of of the professionals.3,14,15 In different places throughout
the volunteer and their support.1 ! 7 Volunteer experience the world, the most common tasks for the volunteers are
has also been explored, including the type of stress housekeeping, assisting in personal care, shopping and
associated with this kind of volunteering,8 and the help with transportation. They are also given indirect
tasks, such as fundraising and office work. Further,
motives behind volunteering.7 Jeppsson and Grassman,9
volunteers support the family in their process of mourn-
assert that there are many reasons for working as a
ing both before and after the death of a patient.7,15 This is
volunteer. Both pure altruism and individualistic self-
the situation in many western countries which have a
interest are listed. The most important reasons, however,
strong volunteer program tradition. Nevertheless,
are the welfare of the other person, the task in itself or
although the philosophy and care approach of palliative
the mutual exchange. Roessler et al .,10 probed into the
care is well established in Sweden, organized volunteer
motives, among other things, of the volunteers who are services in this sector are not widespread.
active within hospices. Emerging motives included help- Elements that are important for the work of the
ing others, giving of their free time to work they believed volunteers in hospice organizations include recruiting
in, personal experience of the death of close relatives, self- and education, contacts with patients, relations with
fulfilment and personal growth, and learning more about employees and other volunteers, and the level of involve-
life and death. These motives are verified in other ment the volunteers themselves experience in the hospice
studies,2,7,11,12 as well as, for example, by Claxton-Old- organizations.2 For a volunteer to identify with and be
field et al. ,13 who describe such motives as leisure, integrated in the hospice organization, they must ac-
personal gain, altruism and civic responsibility. Franzén’s quaint themselves with its purpose and goals and with the
study,12 into volunteer experience in Swedish hospice care people working at the hospice. They will also need time
describes volunteer activities and role issues. Although to adjust to the organization, and will need ongoing
activities at a hospice include, explicitly or implicitly, support to be able to maintain their identification with
encounters with death and dying, we have not found any the hospice.11,15 As a member of the team, the volunteer
must be given such information about the family or the
patient as is necessary for them to be able to fulfil their
Address for correspondence: Joakim Öhlén, Department of
Nursing, Karolinska Institutet, 23 300, SE-141 83 Huddinge, tasks.3,8 The volunteers also need to share their thoughts
Sweden. and feelings with personnel and with other volunteers in
E-mail: order to feel part of the team.11
# 2005 Edward Arnold (Publishers) Ltd 10.1191/0269216305pm1083oa
, Being a hospice volunteer 603
The personal benefits of working in the non-profit an occasional introductory followed by ad hoc support,
sector, as reported by Field and Johnson,2 are that you to comprehensive, continuous support programs. The
feel you are doing something important and you come participation of volunteers within hospices in Sweden has
out of yourself to experience a lot of things from other caused discussions with the unions, because of the
perspectives. In exchange for the time that the volunteers supposed risk of volunteers replacing employees.4
give to hospices, they receive appreciation, gratitude and
friendship. This also constitutes a reason for continuing Participants
as a volunteer. Reasons for discontinued involvement Three hospices in central and western parts of Sweden
with a hospice may be that the volunteer feels taken for with three to ten years of volunteer experience were
granted by staff, experiences a change in personal strategically sampled for the study, and were chosen
relationships and is disappointed with the lack of relevant because of their different styles of organization (public
information and support from hospice personnel. health care as well as non-profit foundations) and extent
The aim of this study is to obtain an understanding of and orientation of volunteer services. The nursing
what it means to be a hospice volunteer in a country managers at each of these hospice units were contacted
without a tradition of hospice or palliative care volunteer for permission to interview volunteers, who they con-
services. tacted utilizing convenient sampling. The managers
started out by verbally describing what participation in
the study entailed, after which the volunteers in each
Method hospice were provided with written information and
asked to participate. The ten volunteers, nine women
A qualitative design was chosen for the study. Since the and one man, who were asked to participate, accepted.
focus was on meanings in personal experiences including All had Swedish as their first language and were aged
existential dimensions, we chose a phenomenological between 30 and 70. Three were retired, one had retired
hermeneutic approach,16,17 out of the interpretation prematurely because of illness, and the remaining six
theory of Ricoeur.18,19 This approach facilitated explora- were active in their professions. These professionals
tion of how the phenomenon of being a hospice volunteer worked within hospitals, churches and schools, with
in a certain context is lived, and in what ways it might be students and in the service sector. The interviewees had
interwoven with different aspects from the life-world, been active as volunteers for between six months and ten
such as life history, actual situation, and anticipated years.
future. Interpretation of meanings thereof aims to
enhance future understanding of volunteer experience. Ethics
The study was approved by the Ethics Committee at the
Context of the study Medical Faculty, Gothenburg University, Sweden (Ö 081-
In Sweden, where this study was performed, palliative 02) and informed consent preceded participation. The
care generally belongs to the public sector in home care anonymity of the volunteers was guaranteed as otherwise
settings,20 complemented by palliative consulting teams the volunteers may not have felt entirely open because of
and a few independent hospices.21 Sweden has a century- their loyalty to the hospice. Volunteers were also told that
long tradition of voluntary work, though not within they could stop participating at any time.
palliative care. The mindset of voluntary work has been
shaped by the traditions of the non-profit sector, includ- Interviews
ing for instance, independent churches and cultural The first author (BA), experienced within hospice care,
groups, or various organizations working for specific conducted the narrative interviews. The participating
interest groups, such as pensioners, or for the promotion volunteers were asked to suggest a place for the interview,
of sports. Voluntary work also features strongly in the and all took place in their respective hospices. Eight
social sector, providing support and help of various volunteers gave their consent to tape-record the inter-
kinds, for instance, programs targeted at helping drug views. Two did not want to be recorded, but accepted that
addicts or homeless people.9,22,23 written field notes would be taken during the interview.
The hundred or so volunteers that were involved with The opening question of the interview was: what made
15 Swedish hospices in 1999 are viewed as a complement you become a volunteer here? Then the volunteers were
to professional palliative care.24 The objective of includ- asked to describe personal experiences from their volun-
ing volunteers in services is usually stated as ‘to enrich tary work. The interviewer assumed the stance of a
life and bring a sense of ‘‘nonmedicalization’’ to hospice reflective listener,25 interrupting only when clarification
care’. Activities provided by volunteers are usually was needed for comprehension. In this way, the partici-
diverse. What presently differs between hospices is the pants related personal stories from their volunteer
structure of volunteer co-ordination and support; from experience. The interviews lasted between 30 and
Being a hospice volunteer
Birgit Andersson Institute of Nursing, Sahlgrenska Academy at Gothenburg University, Gothenburg and
Joakim Öhlén Institute of Nursing, Sahlgrenska Academy at Gothenburg University, Gothenburg and
Department of Nursing, Karolinska Institutet, Stockholm
The aim of this study was to obtain an understanding of what it means to be a hospice
volunteer in a country without a tradition of hospice or palliative volunteer care services.
Ten volunteers from three different hospices in Sweden were interviewed. Their
narratives were interpreted with a phenomenological hermeneutic method. Three themes
were disclosed: motives for becoming involved in hospices, encountering the hospice and
encountering the patient. The interpretations disclose a need for the volunteer to be
affirmed as a caring person and received in fellowship at the hospice. Positive encounters
with a hospice are closely related to personal growth. Volunteers feel rejected if their need
for meaning and for belonging to the hospice is not satisfied. This shows that hospices
need to set goals in terms of volunteer support, particularly regarding existential
issues following the encounter with the hospice and the patient. Palliative Medicine
2005; 19: 602 !/609
Key words: hermeneutics; hospice volunteer; palliative care; phenomenology; volunteering
Introduction and aim study into existential meanings of being a volunteer
within hospice or palliative care.
Previous research on volunteering in palliative care has, Volunteers are considered a unique resource in the
to a large extent, been concerned with issues of organiza- palliative care team, completing and enhancing the value
tion, such as economics, recruiting, education, the role of of the professionals.3,14,15 In different places throughout
the volunteer and their support.1 ! 7 Volunteer experience the world, the most common tasks for the volunteers are
has also been explored, including the type of stress housekeeping, assisting in personal care, shopping and
associated with this kind of volunteering,8 and the help with transportation. They are also given indirect
tasks, such as fundraising and office work. Further,
motives behind volunteering.7 Jeppsson and Grassman,9
volunteers support the family in their process of mourn-
assert that there are many reasons for working as a
ing both before and after the death of a patient.7,15 This is
volunteer. Both pure altruism and individualistic self-
the situation in many western countries which have a
interest are listed. The most important reasons, however,
strong volunteer program tradition. Nevertheless,
are the welfare of the other person, the task in itself or
although the philosophy and care approach of palliative
the mutual exchange. Roessler et al .,10 probed into the
care is well established in Sweden, organized volunteer
motives, among other things, of the volunteers who are services in this sector are not widespread.
active within hospices. Emerging motives included help- Elements that are important for the work of the
ing others, giving of their free time to work they believed volunteers in hospice organizations include recruiting
in, personal experience of the death of close relatives, self- and education, contacts with patients, relations with
fulfilment and personal growth, and learning more about employees and other volunteers, and the level of involve-
life and death. These motives are verified in other ment the volunteers themselves experience in the hospice
studies,2,7,11,12 as well as, for example, by Claxton-Old- organizations.2 For a volunteer to identify with and be
field et al. ,13 who describe such motives as leisure, integrated in the hospice organization, they must ac-
personal gain, altruism and civic responsibility. Franzén’s quaint themselves with its purpose and goals and with the
study,12 into volunteer experience in Swedish hospice care people working at the hospice. They will also need time
describes volunteer activities and role issues. Although to adjust to the organization, and will need ongoing
activities at a hospice include, explicitly or implicitly, support to be able to maintain their identification with
encounters with death and dying, we have not found any the hospice.11,15 As a member of the team, the volunteer
must be given such information about the family or the
patient as is necessary for them to be able to fulfil their
Address for correspondence: Joakim Öhlén, Department of
Nursing, Karolinska Institutet, 23 300, SE-141 83 Huddinge, tasks.3,8 The volunteers also need to share their thoughts
Sweden. and feelings with personnel and with other volunteers in
E-mail: order to feel part of the team.11
# 2005 Edward Arnold (Publishers) Ltd 10.1191/0269216305pm1083oa
, Being a hospice volunteer 603
The personal benefits of working in the non-profit an occasional introductory followed by ad hoc support,
sector, as reported by Field and Johnson,2 are that you to comprehensive, continuous support programs. The
feel you are doing something important and you come participation of volunteers within hospices in Sweden has
out of yourself to experience a lot of things from other caused discussions with the unions, because of the
perspectives. In exchange for the time that the volunteers supposed risk of volunteers replacing employees.4
give to hospices, they receive appreciation, gratitude and
friendship. This also constitutes a reason for continuing Participants
as a volunteer. Reasons for discontinued involvement Three hospices in central and western parts of Sweden
with a hospice may be that the volunteer feels taken for with three to ten years of volunteer experience were
granted by staff, experiences a change in personal strategically sampled for the study, and were chosen
relationships and is disappointed with the lack of relevant because of their different styles of organization (public
information and support from hospice personnel. health care as well as non-profit foundations) and extent
The aim of this study is to obtain an understanding of and orientation of volunteer services. The nursing
what it means to be a hospice volunteer in a country managers at each of these hospice units were contacted
without a tradition of hospice or palliative care volunteer for permission to interview volunteers, who they con-
services. tacted utilizing convenient sampling. The managers
started out by verbally describing what participation in
the study entailed, after which the volunteers in each
Method hospice were provided with written information and
asked to participate. The ten volunteers, nine women
A qualitative design was chosen for the study. Since the and one man, who were asked to participate, accepted.
focus was on meanings in personal experiences including All had Swedish as their first language and were aged
existential dimensions, we chose a phenomenological between 30 and 70. Three were retired, one had retired
hermeneutic approach,16,17 out of the interpretation prematurely because of illness, and the remaining six
theory of Ricoeur.18,19 This approach facilitated explora- were active in their professions. These professionals
tion of how the phenomenon of being a hospice volunteer worked within hospitals, churches and schools, with
in a certain context is lived, and in what ways it might be students and in the service sector. The interviewees had
interwoven with different aspects from the life-world, been active as volunteers for between six months and ten
such as life history, actual situation, and anticipated years.
future. Interpretation of meanings thereof aims to
enhance future understanding of volunteer experience. Ethics
The study was approved by the Ethics Committee at the
Context of the study Medical Faculty, Gothenburg University, Sweden (Ö 081-
In Sweden, where this study was performed, palliative 02) and informed consent preceded participation. The
care generally belongs to the public sector in home care anonymity of the volunteers was guaranteed as otherwise
settings,20 complemented by palliative consulting teams the volunteers may not have felt entirely open because of
and a few independent hospices.21 Sweden has a century- their loyalty to the hospice. Volunteers were also told that
long tradition of voluntary work, though not within they could stop participating at any time.
palliative care. The mindset of voluntary work has been
shaped by the traditions of the non-profit sector, includ- Interviews
ing for instance, independent churches and cultural The first author (BA), experienced within hospice care,
groups, or various organizations working for specific conducted the narrative interviews. The participating
interest groups, such as pensioners, or for the promotion volunteers were asked to suggest a place for the interview,
of sports. Voluntary work also features strongly in the and all took place in their respective hospices. Eight
social sector, providing support and help of various volunteers gave their consent to tape-record the inter-
kinds, for instance, programs targeted at helping drug views. Two did not want to be recorded, but accepted that
addicts or homeless people.9,22,23 written field notes would be taken during the interview.
The hundred or so volunteers that were involved with The opening question of the interview was: what made
15 Swedish hospices in 1999 are viewed as a complement you become a volunteer here? Then the volunteers were
to professional palliative care.24 The objective of includ- asked to describe personal experiences from their volun-
ing volunteers in services is usually stated as ‘to enrich tary work. The interviewer assumed the stance of a
life and bring a sense of ‘‘nonmedicalization’’ to hospice reflective listener,25 interrupting only when clarification
care’. Activities provided by volunteers are usually was needed for comprehension. In this way, the partici-
diverse. What presently differs between hospices is the pants related personal stories from their volunteer
structure of volunteer co-ordination and support; from experience. The interviews lasted between 30 and
