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Journal of Palliative Care 28:2 / 2012; 97 –104
© 2012 Institut universitaire de gériatrie de Montréal
Keywords: cancer, end of life, palliative, nursing care,
relationships, home
Abstract / Providing palliative care in the home pres-
ents a variety of challenges for nurses and other care
providers. As part of a focused ethnographic study
examining client/caregiver/care-provider relationships
within the socio-cultural context of home-based pallia-
tive care, this paper describes the provision of palliative
care to Canadian seniors with advanced cancer from
the perspective of nurses. Data were collected through
in-depth interviews (n=19) with three palliative care
nurses and participant observations in four households
over a six-to-eight-month period. Home-based palliative
care nursing was depicted in this study as a dialectical
experience, revealing three relational practice patterns:
making time-forfeiting time, connecting-withdrawing,
and enabling-disabling. Nurses attempted to negotiate
the tensions between these opposing approaches to
palliative care. Study findings suggest that the socio-
cultural context of palliative care is not conducive to
high-quality palliative care and provide several insights
related to future directions for practice, policy, and
research.
Résumé / La prestation des soins palliatifs à domicile
offre un nombre de défis aux infirmières et autres soi-
gnants. Cette étude de nature démographique portant
sur les relations client-soignant dans le contexte socio-
culturel des soins palliatifs à domicile, donne un aperçu,
selon la perspective des infirmières, de la façon dont les
soins sont prodigués aux personnes âgées atteintes de
cancer avancé au Canada. Les données ont été
recueillies par trois infirmières en soins palliatifs et un
observateur, sur une période de six à huit mois, lors
d’interviews en profondeur auprès de 19 participants
représentant quatre familles. Dans cette étude on définit
les soins palliatifs à domicile comme étant une expé-
rience dialectique reflétant trois modèles de pratique
relationnelle: prendre le temps/rationner le temps, créer
des liens/briser des liens, et offrir un support/restreindre
le support. Les infirmières tentent de gérer les tensions
entre ces approches opposées en soins palliatifs. Les
résultats de l’étude semblent suggérer que le contexte
socio-culturel des soins palliatifs ne favorise pas la
prestation de soins de haute qualité. Cependant, cette
étude nous offre plusieurs orientations susceptibles de
nous aider dans la direction future des soins palliatif,
dans sa pratique, ses politiques et ses recherches.
INTRODUCTION
As Barnard and colleagues aptly point out: “The
goals of palliative care are easy to state. Realizing
them is not so easy” (1, p. 1). One of the difficul-
ties in achieving these goals is that palliative care
involves complex, dynamic interpersonal relation-
ships between and among clients, their families,
and professional caregivers. Because palliative
care is provided within this relational context, it is
essential that we pay attention to how these mul-
tiple relationships promote optimal palliative care.
In this article, we explore these relationships in the
context of home-based palliative care.
Palliative care is a philosophy as well as a
model of care delivery (2), the goals of which are
to prevent and relieve suffering and to improve
the quality of life of persons living with a life-
threatening illness (usually at an advanced stage)
and that of their families (3). Many countries have
established interdisciplinary standards for pallia-
tive care provision that are consistent with these
goals. For example, the principles and standards
of hospice palliative care nursing in Canada (the
Canadian Hospice Palliative Care Association
[CHPCA] Nursing Standards of Practice [4]) are
based on holistic care and address the physical,
psychological, social, cultural, emotional, and
spiritual needs of each person with a life-limiting
illness and his or her family. Furthermore, the
CHPCA supports high-quality palliative care for
people living with a life-limiting illness and their
families in all clinical settings, including patients’
homes.
Although there is a growing commitment by
health professionals and families alike to accom-
modate the client’s desire to be cared for at home
as long as possible (5), there are many challenges
to achieving optimal home-based palliative care.
First, the transfer of care from hospital to home
has involved “sending care closer to home” (6, p.
21), including palliative care. Even though health
and social care professionals are required to
support family caregivers (2, 4), the quality and
type of support is questionable. Home care nurses
Negotiating Relational Practice
Patterns in Palliative Home Care
Catherine Ward-Griffin, Carol McWilliam, and Abram Oudshoorn
C Ward-Griffin (corresponding author): Faculty of Health Sciences, Arthur Labatt Family School of Nursing, University of Western Ontario,
London, Ontario, Canada N6A 5C1; cwg@uwo.ca
C McWilliam,A Oudshoorn: Faculty of Health Sciences, Arthur Labatt Family School of Nursing, University of Western Ontario,
London, Ontario, Canada
Negotiating Relational Practice Patterns in Palliative Home Care
97
Negotiating Relational Practice Patterns in Palliative Home Care
98
are often pressed to ration and limit their services,
delegating care to families, which tends to create
an uneasy alliance between family caregivers and
professional care providers (7-9). When cost con-
tainment is the primary rationale for these shifts
in care, there is a risk of undermining the relation-
ships between and among clients, families, and
care providers in home-based palliative care.
If palliative care is to be optimized, then we
must better understand the ways in which clients,
families, and care providers relate to one another
and the contextual factors that shape their rela-
tionships. Although there has been unparalleled
growth in home-based palliative care (4), few
studies have explored the provision of palliative
care from the perspective of the home care
provider (10) within the socio-cultural context of
care (11). This article examines the provision of
home-based palliative care for Canadian seniors
with advanced cancer from the perspective of
nurses.
THEORETICAL BACKGROUND
This focused ethnographic study was guided by a
relational health promotion perspective. Relational
inquiry demands “a more in-depth examination
of the values, experiences, goals and concerns
shaping action within particular moments of prac-
tice and conscious consideration of possibilities
and intentional, responsive action” (12, p.198).
Much of the current nursing literature on relation-
ships tends to focus on the psychological attributes
and abilities of the nurse (for example, listening,
being there), reflecting autonomous ideologies of
nurses who either help or hinder the development
of trusting and respectful relationships (13). This
individualistic approach to relationships tends to
credit and/or blame nurses for “good” and “bad”
relationships (14) and affords little attention to the
socio-cultural context of those relationships (12). In
contrast, a relational view requires that we look
beyond these one-on-one encounters and examine
the socio-cultural context (for example, workload,
workplace policies) that brings nurses, clients, and
clients’ families together. Thus, we need an under-
standing of relationships in home-based palliative
care that considers the juxtaposition of personal
and contextual elements if we are to promote the
health of persons living with a life-limiting illness
and their families.
LITERATURE REVIEW
Overall, there has been little investigation of
client/family member/nurse relationships in
home-based palliative care. Those studies that
have explored palliative nursing care from the
perspectives of clients (15, 16), families (11, 17),
and nurses (10, 18) have focused primarily on the
personal qualities and care behaviours of nurses.
The centrality of knowing the patient and the
family has been identified as a key concept in the
provision of high-quality palliative nursing care
(10, 19, 20). For example, nurses who develop
trusting nurse-client relationships tend to demon-
strate a holistic approach to caring, convey an
understanding of patients’ suffering, appreciate
clients’ unvoiced needs, and provide comfort
without being asked (18). It is important, however,
to examine those broader contextual factors
within home-based palliative care, such as organi-
zational policies, that shape nursing relationships
with clients and families.
Understanding nurses’ relational experiences
and the contextual factors that help or hinder the
provision of optimal relational home-based pallia-
tive care is particularly important because nurses
identify themselves, and are identified by clients
and their families, as key players in providing
holistic care and emotional support for clients and
their families and in coordinating services for
them (21, 22). A number of researchers have exam-
ined the experiences of home-based palliative care
nurses in the United Kingdom, Canada, and else-
where (10, 23). Common findings include the
importance of developing relationships with
persons who are dying and the emotional difficul-
ties involved in caring for them. Yet research sug-
gests that while nurses have key skills in provid-
ing physical care and in coordinating the work of
others, they struggle with the psychological
aspects of care (24). Little is known, however,
about how the practices and policies of the organ-
ization, such as rigid regulations that pressure
nurses to shorten the length of visits (23), shape
the development of these nurse-client relation-
ships.
A few studies have examined the relationships
between nurses and family caregivers in home-
based palliative care (7, 25). While investigations
have illustrated that persons and their families
living with a terminal illness consider professional
support to be important (21), emotional involve-
ment with family members may be difficult for
nurses, eliciting feelings of inadequacy and help-
lessness (26-28). Furthermore, little is known
about the specific types of relationships home-
based palliative care nurses have with families.
Although trust, approachability, effective commu-
nication, and supportive relationships with clients
and families have been identified as valuable (10,
16, 18, 29), the supportive role in palliative care is
complex and includes multiple dimensions, such
as knowing, relating, and empowering (11, 25).
Additionally, nurses’ beliefs about families being
both a resource and a burden highlight the com-
plexity of nurse-family relationships in palliative
care (7). Given that some family relationships
deteriorate while others strengthen during end-of-
life care (30), further research is needed to under-
stand how nurses support and promote the health
of clients and their families during this challeng-
ing time. Nurses have also claimed that there is
not enough time to attend to the needs of both the
person with the life-threatening illness and the
family caregiver (24). Such findings raise ques-
tions about how nurses negotiate their relation-
ships within this socio-cultural context of pallia-
tive home care.
In summary, to date there has been limited
exploration of nurses’ perspectives on the
client/family member/nurse relationships within
the context of home-based palliative care. Further
understanding of nursing relationships in pallia-
tive care and how they support or promote the
health of clients and their families is needed.
METHODS
A focused ethnographic approach was used for
this study in order to explore relationships within
the socio-cultural context of home-based palliative
care. This approach — which typically involves an
exploratory study, including in-depth interviews
and participant observation, within a specific com-
munity (31) — was appropriate because it allowed
us to focus on how nurses negotiated their rela-
tionships within context-specific home-based pal-
liative care. The study was approved by the ethics
review board of the University of Western Ontario
and partner community health agencies.
Recruitment
Case managers for senior clients with advanced
cancer receiving end-of-life palliative care from
local community health agencies approached
their clients and asked them if they were inter-
ested in participating. If they were, the project
coordinator contacted them by phone. Once
the clients agreed to participate, their next of kin
and primary care nurses were contacted. Four
client/family member/ nurse triads ultimately
enrolled in the study.
Sample
The clients (two males and two females) receiving
in-home palliative care ranged in age from 67 to 75
and had a low-to-moderate income. Three were
foreign-born. Three of the family participants were
spouses (two wives and one husband); the fourth
was a daughter. The nurse participants were
English-speaking, White females born in Canada
and ranging in age from 44 to 57; they had worked
(two full-time and one part-time) in home care for
between 5 and 15 years. All were the client’s
primary care nurse; one was the primary care
nurse for two of the four households.
Data Collection
Data collection involved four to six in-depth, semi-
structured interviews with each member of each
client/family member/nurse triad as well as par-
ticipant observations in each of the four Canadian
households over a period of six to eight months in
2006-2007. Interviews were conducted at two-to-
four-week intervals, usually in a private area of the
family home or in the nurses’ offices. A total of 19
audiotaped in-depth individual interviews with
nurse participants, about one hour each, were con-
ducted. Open-ended questions were used to elicit
discussion of what nurses thought was important
and how they experienced palliative care relation-
ships.
Participant observations were also conducted.
One researcher visited each household sporadi-
cally for six to eight months, completing about 20
hours of participant observations. This provided
an opportunity to capture the nuances of commu-
nication (for example, discussion of pain manage-
ment), non-verbal expression, and caregiving
interactions in all participant groups. Immediately
after each interview, the researchers recorded their
perceptions, insights, and observations (32), which
added to the data’s richness and guided planning
for future interviews. Interviews and field notes
were transcribed verbatim and entered into
NUD*IST software.
Analysis
We used the guidelines established by Lofland
and colleagues (33). We coded the key phrases and
themes that emerged then compared them to
clarify interrelationships of concepts and themes.
The research team met monthly to combine their
analyses, explore and expand on the themes, and,
as additional data were acquired, create a holistic
conceptualization of the palliative care experience.
A team member subsequently checked with partic-
ipants to determine whether their perspectives had
been meaningfully captured.
FINDINGS
Home-based palliative care nursing was portrayed
in this study as a dialectical experience, revealing
three nursing relational practice patterns: making
time-forfeiting time, connecting-withdrawing, and
enabling-disabling. While making time, connect-
ing, and enabling reflected an empowering prac-
tice approach to palliative care, forfeiting time,
withdrawing, and disabling reflected a self-protec-
Negotiating Relational Practice Patterns in Palliative Home Care
99
Negotiating Relational Practice Patterns in Palliative Home Care
100
tive approach that tended to disempower clients,
families, and nurses alike. However, study find-
ings demonstrated that palliative care nursing is
not a dualistic, mutually exclusive practice that is
either empowering or disempowering — it is
dialectical. In other words, the nurses in this study
simultaneously had both empowering and disem-
powering practice patterns. For this reason, they
were attempting to negotiate the tensions between
these opposing approaches to palliative care.
Making Time-Forfeiting Time
The first pattern, making time-forfeiting time,
illustrated the importance of having the time for
relationships in palliative care nursing to occur.
The most revealing aspect was the way in which
nurses saw time as both a resource and a con-
straint. Viewing time as a resource, they talked
about creating time for terminally ill clients and
their families. Essentially, they created a dialogical
space among themselves, their clients, and the
clients’ families in which to share important infor-
mation, make decisions about care, talk over con-
cerns, and grieve actual and anticipated losses
associated with the client’s prognosis. They per-
ceived time as key to the development of relation-
ships in palliative care — the backbone of pallia-
tive nursing practice. One nurse explained how
she purposely spent time with clients and families
so that she could be responsive to potentially
divergent issues:
“I spend all the time with the wife, kids, and every-
body together and answer every question, every
concern, and everything from that point of view
because my goal is to get the person through to the
point where they’re comfortable...If I get the impres-
sion that Fred [the client] is feeling one way and
Andrea [the client’s wife] is feeling another, or she’s
not coping with [Fred’s terminal illness], well, then,
I would take her aside; I would definitely give her
some time so that she can express how she feels.”
Another nurse managed her time by prioritiz-
ing the needs of clients and their families, but she
made sure she was available when necessary:
“They all know after a certain amount of time that if
they really need my time, I will be there. Some days
I may not be able to be there as long because there is
someone else whose needs will be greater...But when
they need me, I just stop and stay.”
In contrast, nurses also experienced time as
something that had to be forfeited. They saw it as
a persistent internal and external constraint that
forced them to ignore certain aspects of palliative
nursing, such as offering emotional support. Time
was always in short supply, and thus it had to be
parcelled out judiciously. This quote also reflects a
focus on quantifying care as a means of coping
with the increasing size of nurses’ caseloads:
“I have people on my list. [For] two of them, I said
that I can’t come and see you today. I ask, ‘Do I
really need to come today?’ I really would have liked
to, but you constantly have to prioritize. I just figure
if there’s not a lot of symptom management issues,
then what am I coming in for? If I am not doing
anything [that is] nursing, then they want us to be
mindful of money and reduce people if we can,
reduce visits.”
Connecting-Separating
The next practice pattern, connecting-separating,
illuminated the nature of the relationships experi-
enced in palliative care nursing. Relating to clients
and coping with physical, emotional, social, and
spiritual issues was very challenging for nurses.
Although they reported that relationships are an
essential component of palliative care nursing,
they also noted the tension involved in connecting
with clients while attempting to set boundaries on
those relationships.
The time nurses invested in getting to know the
needs, personal life experiences, and preferences
of clients and families yielded positive, nurturing
relationships. Nurses’ willingness to truly connect
with clients as human beings helped to develop
these relationships. Connecting meant more than
spending time, or being merely a physical pres-
ence; it meant forging an emotional link with
clients and their families.
“I find out who they are, what they’ve been doing all
their lives, all the relationships in the family, [their]
common interests. They start to have a sense of their
importance, that it’s not only them, but their whole
life that is important.”
Within this practice pattern, nurses embraced a
holistic approach to palliative care instead of
setting boundaries. They acknowledged that their
own experiences, values, and beliefs entered into
their care relationships and helped them to foster
close connections with their clients.
“I think if you have a strong religious background,
that would help, especially if it’s similar to the
client’s…then it really matches well…As we
journey together, I seem to know more [about] his
heart and soul, and he knows that I know. It’s a two-
way street. You can’t just say, ‘Tell me everything.’
They want to know who you are and what you do.”
Nurses also noted that both clients and their
families are service recipients, and all are deserv-
ing of their care.
“I always go up to her [a family member], touch her,
put my hand out, and ask her, ‘Are you okay? Any-
thing that you need, anything that you want?’ And
that’s all you can do, really, just be there...There’s a
lot of deep affection for them, for them both.”
In contrast, when nurses did not spend time
getting to know clients and their families, or when
they prioritized physical care over emotional care,
they were less likely to forge connections. At
times, they said, they were more comfortable
dealing with the physical aspects of palliative care
than the emotional or spiritual aspects. They
acknowledged that preparing for the death of a
client was a particularly challenging and emotion-
ally draining phase of the relationship.
“So, all of a sudden, I really am internally preparing
myself, and it becomes a lot more difficult to talk
about some things with them.”
Even though the importance of connecting with
clients and their families was a philosophy that
palliative care nurses shared, they also sometimes
had a tendency to protect themselves from becom-
ing too close.
“After a certain amount of time, I start to feel like
withdrawing. I have that ball of tension in me, the
same as what [clients] feel. You never know when
the day is [going to arrive]...It takes a lot of energy;
it’s a heavy-duty thing.”
At times, this emotional distancing or separat-
ing was compounded by decreasing staff-client
ratios and organizational support.
“They can’t keep putting us in the situation, with 9
or 10 people a day, and going in just to focus on the
physical things: ‘Are your bowels going? Are you
throwing up?’ There is more to it than that — there
is the whole family...Why do we have to be so cold
and dissociate from everything so completely that we
can handle 10 people a day?”
Enabling-Disabling
The final practice pattern, enabling-disabling,
revealed the potential for empowerment or disem-
powerment within the client/family member/
nurse relationship. Power and control were key
components of this practice pattern, reflecting
a caring-with or caring-for health promotion
approach within palliative care. Nurses collabo-
rated with clients and their families to promote
health by engaging in caring-with empowering
strategies; they helped clients and families to cope
with the day-to-day challenges of living with a
terminal illness. One nurse explained:
“If you run in and you just totally do everything for
somebody, I think it makes them weaker all the way
through. So I really do encourage them to try to
gather up the information if they learned something
that I may not know, and I’ll tell them, ‘Great’...
We work together that way.”
Another nurse talked about supporting clients
and families facing an uncertain future.
“He still knew I was there and he grabbed my hand
and he held it. He held my hand the whole time and
it was, there’s not a whole lot you can do, but you
focus on making the person whole…That gives them
hope, and it gives them faith, and it gives them trust
that there’s going to be a tomorrow and a tomorrow
after that.”
At the same time, however, there was a need to
ensure the right balance of support or risk com-
promising clients’ perceptions and experiences of
power and control over their lives:
“If you’re visiting too frequently, it might affect
their life. [For example], if they sense that you’re
there too often, and they’re not really feeling that
sick — you don’t want to do that. You want to just
be a support to them, as long as they know that
they’re not alone and there’s somebody to be with
them.”
In contrast, nurses also enacted a disabling
pattern, primarily as a means of survival. Faced
with heavy caseloads, unrealistic expectations,
and staff shortages, they provided the bare
minimum of care in order to keep up with the
demands placed on them.
“In the back of my mind, there’s always…that
nagging from [the community agency] — cut costs,
cut visits…everybody [is] trying to do things on a
shoestring budget. This is what’s designated: 45
minutes, period, bang, cut and dried, box [it]...that’s
your allotted time; if you can’t do [the care] in that
[time], that’s your problem.”
This pattern was also disabling to clients and
their family members:
“[The family member is] going to want more from
me than I can give...because I feel like I’m all wiped
out…all it takes is one night on call where you have
to go out late, but you are still expected to see nine
people the next day. And they keep saying. ‘Well,
there is nobody else to give [the care].’”
DISCUSSION
The study findings reflect the relationship experi-
ences of three palliative care nurses. These find-
ings afford a human understanding that is not
generalizable beyond our study participants;
Negotiating Relational Practice Patterns in Palliative Home Care
101
Negotiating Relational Practice Patterns in Palliative Home Care
102
however, they do provide us with knowledge that
we can use to help develop care in a number of
palliative contexts. Although it has been well
established that palliative care nurses should
provide supportive care to dying clients and the
family members of these clients (2), the study
findings suggest that the quality and type of
support they give is sometimes suboptimal. Using
a relational lens provided a rich, contextualized
understanding of nursing practice patterns in pal-
liative care that can help nurses become aware of,
and perhaps counter, the restrictive policies that
shape their practice. The study findings offer
several insights on which to base future directions
for home-based palliative care practice, policy, and
research.
First, the findings depict the culture of home-
based palliative care as one in which the day-to-
day experiences of nurses are focused on time,
both as a resource and a constraint. Time is well
documented as an important consideration in pal-
liative care. Clients, families, and nurses have all
reported that nurses’ lack of time is a significant
barrier to optimal palliative care (16, 34). Yet orga-
nizational policies that restrict the frequency and
duration of nursing visits prevail, in spite of posi-
tive effects from nurses spending time with clients
(16). Home care nurses continue to work under
great strain, with caseloads that are too large to
allow them to spend adequate time with clients
and families (35); this often leads to feelings of
frustration and helplessness (36).
If the quality of home-based palliative care is to
be optimized, core values such as alleviating suf-
fering and preserving dignity (5) must be made
central to this care. It is imperative that nurses
view the time they spend with clients and families
as a resource, as an opportunity to be with and
bear witness to another’s end-of-life passage (37).
True connection with another person (38, 39) gives
meaning and purpose to the practice of palliative
care nurses who spend time with people at the
end of their lives. However, nurses need both
administrative and collegial support in order to
practice in this manner and create a context for
change. Further research guided by a relational
lens would shed light on new ways of being with
persons who are dying and their families, on the
nature and process of nursing relationships, and
on ways of addressing some of the constraints of
the current home care system.
Second, study findings suggest that developing
supportive, nurturing nurse-client and nurse-
family relationships is a complex process, one that
involves engaging in emotional labour (40) and
valuing relational practices in home-based pallia-
tive care. As have participants in other studies
(41), the nurses in our study spoke about the
importance of connecting with and supporting
clients, maintaining that they could not provide
optimal care without a therapeutic relationship.
However, although the nurses claimed that the
nurse-client relationship (5, 42) and client-centred,
empowering care partnerships (43)are key to pal-
liative nursing care, they did identify some barri-
ers to enacting these beliefs and values within the
current context of palliative home care. The nurses
in this study spoke about fiscal constraints on
home care that force time restrictions on them.
Furthermore, the current approach to care tends to
focus on the physical tasks involved in caring for
individual clients and pays little attention to rela-
tional care (12, 39, 44) or the needs of family
members (25). The nurses in our study were dis-
tressed when they were expected to separate
physical care from emotional care and clients from
families, and when they did not feel supported by
their organization in attempting to provide
optimal care. They, as have participants in other
studies (23), attempted to maintain professional
boundaries and control their feelings or curtail
their emotional involvement with clients and fam-
ilies as a self-protective measure. Further investi-
gation is needed to better understand the different
types of relational nursing practices within pallia-
tive care and to identify the home care policies
required to support rather than limit nurses’ emo-
tional work.
Optimal end-of-life care also involves relation-
ship building between families and care providers
(12). Like those in other studies (45), the nurses in
this study reported that their relationships with
family caregivers were important, but, due to time
constraints, they were often torn between meeting
the needs of their clients and those of the family
caregivers. It has been suggested that the needs of
the family caregiver can exceed those of the client
(46); therefore, nurses and other health care
providers ought to openly support caregivers as
clients in their own right (47), listening to them
and empathizing with them. It is thus essential to
allocate time at the beginning of, and throughout,
the care trajectory for nurses and family caregivers
to develop trusting, collaborative relationships.
We must acknowledge and value such relation-
ships as the core of palliative care.
Home care organizations also need to play an
active role in supporting nurses and other pallia-
tive care providers by formally adopting the
CHPCA standards of practice and providing in-
service and other educational opportunities. This
type of organizational support is essential if we
are to shift from restrictive policies to policies that
will enable rather than disable nurses in develop-
ing an empowering care practice. Also important
are home care policies that support palliative care
nurses and other home care providers in taking a
family-centred approach to their practice (8, 9, 12).
Finally, the socio-political context is important
to our understanding of the enabling-disabling
nursing practice pattern. As other authors have
found (23, 48, 49), nurses who adopted an en -
abling pattern enhanced clients’ capacities and
growth, helped clients to make informed deci-
sions, and promoted family health within the
context of a terminal illness. In essence, these pal-
liative care nurses made a commitment to clients
and their families to support them, to respect their
autonomy, and to optimize their health. However,
because the current levels of home care services
and nursing support tend to be inadequate to
meet the needs of palliative care clients and their
families (50), the nurses in this study, as have
others (51), also expressed their sense of frustra-
tion and powerlessness. Furthermore, the current
tendency to equate empowerment with promot-
ing independence from the health care system (48,
52) and delegating care work to clients and their
families (25) illustrates the impact that cost-cutting
measures have had on the delivery of home care
in Canada and elsewhere. As have other study
participants (53), the nurses in this study increas-
ingly rationed their care in ways that marginal-
ized meaningful relational engagement. It is not
surprising, then, that the emotional and physical
intensity of palliative care nursing, coupled with
inadequate time and administrative support for
such nursing, can give rise to a disabling practice
pattern, one that undermines true empowerment
and health promotion (54). One example of such a
pattern — others have called it “stagnated caring”
(55) — is when nurses do only what is expected of
them, avoid difficult situations, and become
resigned to their lot. It is important, however, for
palliative care nurses to reflect critically on their
ethical obligations within socio-cultural circum-
stances and on how they practice in relation to
those circumstances (12). The current study helps
us to contextualize a disabling type of nursing
practice and begins to suggest ways in which we
can prevent it from developing.
Major shifts in health care financing and home
care reforms have reduced home care services at a
time when nurses and other palliative care
providers have larger caseloads and clients with
more complex needs. Study findings have illumi-
nated common themes of competing priorities
and the quiet struggle of care providers as they
respond to shrinking formal care resources (56). In
this study, nurses employed certain strategies to
get around the perceived unjust policies inherent
in the system. However, nurses are obliged to
attend to issues of workload, availability of
resources, and organizational policies (12), which
may lead to a disabling pattern of practice. It is
important that through nursing practice and
research we explore how policies and other barri-
ers prevent nurses and other home care workers
from practising according to the standards of pal-
liative care. A better understanding of the link
between nursing practice relational patterns
within a socio-cultural context will ultimately help
palliative care practitioners and the organizations
in which they work to advocate for, and collabo-
rate in creating, policies that support an empow-
ering palliative care practice.
CONCLUSION
The current home care context in Canada poten-
tially undermines nursing practice and places pal-
liative care nurses in a precarious situation. The
nurses in this study portrayed the provision of
end-of-life care as a dialectical experience, both
empowering and disempowering. They also
reported that their lack of control over caseload is
counterintuitive to the goals of palliative care.
Although attention to the ongoing processes of
relating and being is particularly important to
optimizing end-of-life care (39), equal attention
must be given to the multiple contextual factors
that lead to the empowerment-disempowerment
of clients, families, and nurses. Clearly, the current
palliative care model needs to be transformed into
one that reflects the values and supportive rela-
tionships so widely espoused in palliative care.
Only then will optimal home-based palliative care
be realized.
ACKNOWLEDGEMENTS
This research was funded by the Canadian Institutes of
Health Research (CIHR-PEP67460). The findings and
conclusions contained in this paper are the authors’.
No official endorsement by the CIHR is intended, nor
should it be inferred. The authors also wish to acknowl-
edge the contributions of the Community Care Access
Centre of London-Middlesex and the Victorian Order of
Nurses, their partner in-home service agencies, and the
clients, family caregivers, and nurses who participated
in this study.
Received: August 13, 2011
Final version accepted: December 20, 2011
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