Anticipatory Caring

[This paper was originally published as Sandgren, A., Thulesius, H., Petersson, K. & Fridlund, B. (2007). Doing good care ? A study of palliative home nursing care. International Journal of Qualitative Studies on Health and Well-Being, 2:4, 227-235 and is reprinted here with the permission of the publisher]

Anna Sandgren, RN, MSc, PhD Candidate; Hans Thulesius, MD,
PhD; Kerstin Petersson, RNT, PhD; Bengt Fridlund, RNT, PhD

Abstract

Today, more and more people die in own homes and nursing
homes, which fundamentally affects community nursing. The aim
of this study was to develop a grounded theory of palliative home
nursing care and we analyzed interviews and data related to the
behavior of community nurses caring for palliative cancer
patients. Doing Good Care emerged as the pattern of behavior
through which nurses deal with their main concern, their desire
to do good care. The theory Doing Good Care involves three
caring behaviors; anticipatory caring, momentary caring and
stagnated caring. In anticipatory caring, which is the optimal
caring behavior, nurses are doing their best or even better than
necessary, in momentary caring nurses are doing best
momentarily and in stagnated caring nurses are doing good but
from the perspective of what is expected of them. When nurses
fail in doing good, they experience a feeling of letting the patient
down, which can lead to frustration and feelings of powerlessness.
Depending on the circumstances, nurses can hover between the
three different caring behaviors. We suggest that healthcare
providers increase the status of palliative care and facilitate for
nurses to give anticipatory care by providing adequate resources
and recognition.

Introduction

The demographics of dying have changed with more people
dying at home or in nursing homes. The number of hospital beds
has declined and homecare has increased, and more own home
deaths are expected in the future (Burge, Lawson & Johnston,
2003; Higginson, Astin & Dolan, 1998; Socialstyrelsen, 2006). The
extension of palliative care varies in different parts of Sweden
(Socialstyrelsen, 2006) and fewer hospital beds increases the
strain for both acute hospital care and homecare (Fürst, 2000).
The acute hospital care has a high pace and a “culture of
quickness” (Andershed & Ternestedt, 1997) and this high pace
was found to be one explanation to why nurses suffered emotional
overload while caring for palliative cancer patients in acute
hospitals (Sandgren, Thulesius, Fridlund & Petersson, 2006). In
the contrast to the high pace in the acute hospitals, the hospice
philosophy has a “culture of slowness” (Andershed & Ternestedt,
1997) and it has thus been suggested that the hospice philosophy
should be spread to all care settings with dying people (Clark,
1993). At the same time, it has been proposed that palliative care
should be available wherever the patient is. In addition, the
patients and their families should receive the same standard of
care irrespective of domicile and source of service delivery
(Dunne, Sullivan & Kernohan, 2005; SOU, 2001). In homecare,
the community nurses have a central position (Wright, 2002), but
their work is in a way an invisible work, predominantly
conducted in the patients’ homes (Goodman, Knight, Machen &
Hunt, 1998; Luker, Austin, Caress & Hallett, 2000). Community
nursing has shown to offer stimulation and appreciation,
especially from patients and relatives, but also a possibility for
nurses to use all their professional skills (Dunne et al., 2005;
Goodman et al., 1998). However caring for palliative cancer
patients in their homes has also been shown to be stressful
(Berterö, 2002; Dunne et al., 2005), emotionally burdensome
(Griffiths et al., 2007), and causing feelings of powerlessness (de
Schepper, Francke & Abu-Saad, 1997). The knowledge of
community nurses’ role has increased during the last years, but
there is a paucity of knowledge on community nurses in palliative
home nursing care.

Our aim in the present study was to develop a grounded
theory of palliative home nursing care. The research question
guiding the study was; what is the main concern for community
nurses caring for palliative cancer patients and how do they
resolve it?

Method

Classic Grounded theory is a general method, which means
that both qualitative and quantitative data can be used, since “all
is data” (Glaser, 1998, p.8). We chose classic grounded theory for
both data collection and analysis since it suited our basic
research question. Grounded theory aims at conceptualizing
patterns of human behavior (Glaser, 1978, 1998). In Grounded
theory categories and their properties emerge from data and
eventually become parts of hypotheses in a theory. The theory is
a probability statement explaining the behavior that accounts for
the resolving of a main concern for the participants (Glaser,
2003). In this study, the theory aims at explaining the patterns of
behavior that community nurses engage in while caring for
palliative cancer patients.

This study was carried out from 2004 to 2006 in seven
different rural communities with a population of 178,000 in the
south of Sweden. These communities lacked any organized form
of advanced palliative home care or palliative unit or hospice at
the time of the study. End of life care was provided mainly at
acute hospitals, in nursing homes and in the patients’ own homes.
A palliative care counseling team consisting of four nurses and
one physician was a link between the communities and the two
hospitals and supported the community nurses during office
hours.

We interviewed 32 female nurses and one male nurse, and
30 of them had more than 10 years of working experience at
hospitals or/and in homecare. The interviews began with: “Tell
me what it’s like to care for palliative cancer patients”. Ideas
emerged of what to ask next while interviewing, and more
specific questions for later interviews while analyzing such as
“Tell me about a difficult caring situation”, “How do you handle
difficult situations?” and “Tell me about a caring situation that
went well”. This procedure is a property of theoretical sampling.
“Theoretical sampling is the process of data collection for
generating theory whereby the analyst jointly collects, codes, and
analyzes his data and decides what data to collect next and where
to find them, in order to develop his theory as it emerges” (Glaser,
1978, p.36). The first ten interviews were tape-recorded and
transcribed, but for the later interviews, only field notes were
taken according to classic grounded theory (Glaser, 1998, 2001).
Interviews lasted between 45 and 90 minutes. By the end of the
study, interviews were shorter owing to the delimiting properties
of grounded theory.

We analyzed the transcribed interviews and the field notes
line by line after each interview. Incidents articulated in the data
were analyzed and coded. During the open coding, the basis for
concept generation, we asked a set of questions to our data: What
is this data a study of? What category does this incident indicate?
What is actually happening in the data? What is the nurses’ main
concern? How do they continually resolve this concern? The
purpose of these questions is to keep the analyst theoretically
sensitive and to avoid description, when analyzing, collecting, and
coding data (Glaser, 1998). We compared open codes with each
other followed by comparing newly generated concepts to new
open codes and then concepts to other concepts and eventually
the core concept Doing Good Care emerged. Hereafter, selective
coding was done to delimit the coding to variables related only to
the core concept. The core concept was thus a template for further
data collection and theoretical sampling (Glaser, 1978, 1998;
Glaser & Strauss, 1967). During the selective coding, secondary
analysis was also done on data that had been collected in our
earlier studies. We chose the interviews that were most
comprehensive; 11 formal interviews with community nurses and
3 focus group interviews with 5 community nurses, 3 surgeons,
and 10 general practitioners (Thulesius, Håkansson & Petersson,
2003) and 16 nurses in acute hospital care caring for palliative
cancer patients (Sandgren et al., 2006). The purpose of the
secondary analysis was to refine the categories and delimit the
coding only to variables related to the emerged core concept. We
also analyzed documents from an education for community
nurses and the palliative counseling team. At the same time we
analyzed field notes and memos from informal interviews,
participant observation at cancer care conferences, and grounded
theory seminars. We compared these data with the formal
interview data, consistent with the grounded theory concept “all
is data”. Our selection of data was guided as much as possible by
theoretical sampling and we stopped collecting data when a
saturation point was reached (Glaser, 1978). Saturation was
reached when the most recent interviews and field notes did not
contribute with any further categories or properties in relation to
the core concept. The theory Doing Good Care focuses on the
properties that repeated themselves across the majority of the
data.

During the whole analytic process, we wrote theoretical
memos in the shapes of text and figures. Memos are the
“theorizing write-up of ideas about substantive codes and their
theoretically coded relationships as they emerge during coding,
collecting and analyzing data and during memoing” (Glaser,
1998, p. 177). We also wrote memos on memos, and developed a
rich memo bank. Through the sorting of memos, we sought
relationships between categories and the core concept, and put
aside time, place, and individuals in the theoretical coding as this
stage indicates. During the analysis, typology emerged as the
most suitable theoretical code and the theory is therefore built up
as a typology, which is one theoretical code out of many
theoretical coding families (Glaser, 2005). We finally wrote up the
memos to a theory as a last stage of the grounded theory
methodology. According to classic grounded theory principles, a
literature review was done after the substantive theory was
formulated, using the literature as another source of data
integrated into the constant comparative process (Glaser, 1998).

A grounded theory should be judged by fit, relevance,
workability and modifiability. Fit is an aspect of validity and
depicts how the concepts match the incidents they represent.
Relevance means that the concepts relate to what is really going
on and how it is continually resolved. A theory that works
explains how a main concern is resolved with variation. The
theory should be modifiable by comparing new relevant data to
existing data. A grounded theory, therefore, should be judged
according to these principles, but a grounded theory is never right
or wrong, the theory only has more or less fit, relevance,
workability and modifiability (Glaser, 1998). The theory Doing
Good Care is modifiable since there are many properties of the
core concept yet to be discovered. The literature review that we
did gave indications of our theory’s relevance, workability and
modifiability. When lecturing on the Doing Good Care theory to
caregivers and researchers, we received approval pertaining to
fit, relevance and workability.

This study was approved by The Regional Ethics Committee
of Lund University, Sweden (LU 680-3) and by those responsible
for home care in the municipalities involved. We obtained written
informed consent from the 33 participants before the interviews.
At the end of each interview, we assessed possible needs for
emotional support and provided each participant with
information about where they could find this if they wished or felt
upset about issues that taking part had raised for them.

A Theory of Doing Good Care

A genuine desire of doing good is the motivation for caring
and the main concern for the nurses. Caring takes time and the
nurses just cannot leave the patient, walk away, and hope that
someone else will take over. The nurses thus feel a responsibility
towards the patients and their relatives. When nurses sense that
they fail in doing good, they also feel that they are letting the
patient down, which may lead to frustration and powerlessness. A
failure in doing good can come from not having the right
resources, either internal or external. Therefore, a lack of time or
knowledge, limited access to physicians, lack of feedback, no
advance planning, and lack of emotional competence are some
reasons for this perceived failure in caring. When nurses cannot
do what is best for the patient, this may also lead to ethical
stress, for example knowing what to do, but not being able to do it
is distressing and leads to feelings of guilt. Nurses are dealing
with this in different ways depending on their type of caring
behavior.

The theory Doing Good Care involves three different caring
behaviors based on the nurses’ desire of doing good (Table 1).
Anticipatory caring emerged as the optimal way of giving
palliative care and means positioning future and doing ones best
or even better than necessary. In momentary caring nurses are
doing best momentarily and in stagnated caring nurses are doing
good but from the perspective of what is expected of them. Which
caring behavior they choose depend on external or internal
factors such as the organization, resources, personality, emotional
competence, knowledge, but also the nurses’ personal life
situation. This means that the nurses can hover between the
three different care types depending on the circumstances.
Elsewhere emotional energy drains, for example from the nurses’
family lives, may also affect the caring behavior. This energy loss
decreases the nurses’ emotional competence and is most common
in momentary caring and stagnated caring. Momentary caring
can also result in good palliative care, but this is contingent on
the individual nurse who gives the care. Stagnated caring on the
other hand may cause a distance or a cold shield towards the
patients and relatives and with this shield; it can be difficult to
create trust.

Table 1. The theory Doing Good Care as emerged from data in
palliative home nursing care (cannot be shown, see pdf version)

Anticipatory Caring

The optimal home care orientation for patients, their
relatives, and for the nurse herself, is anticipatory caring. It is
done by advance care planning through foreseeing trajectories,
creating trust and safety, collaborating and prioritizing. Driven
by their intention of doing their best or even doing better than
necessary, the nurses have a strong interest in palliative care
caused by their personality and their attitude to life.

Foreseeing Trajectories

Foreseeing trajectories is done through predicting and being
one step ahead. Predicting means fore-sighting using knowledge
and experience to predict what might happen; “It is an ability to
foresee what might happen, even if it’s not possible every time”.
With experience, the nurses develop a “clinical gaze” that
promotes safety when facing strange and unexpected situations.
During the whole caring process nurses continually are assessing,
predicting, planning and solving different issues. This is often
considered as a challenge done to the best of their abilities. To
facilitate this process and to be able to plan ahead, nurses
encourage “cutting point talks” with patients and relatives to
inform and elucidate what is happening and what might happen.
In addition, nurses may run an errand without any medical
cause, just to see a patient to form their own opinion about the
patients’ future.

Being one step ahead involves planning and organizing on
the basis of what can be predicted; “You have to think one step
further and plan for what might happen”. By being one step
ahead, nurses are “creating future” and striving forward. Patient
issues are often discussed with colleagues in order to find out
what care the patients should receive. Sometimes nurses are
trying to do more than possible under the circumstances. This is
caused by their strong objective of doing best all the time. They
are trying to overcome obstacles that arise since they can see the
existing possibilities and potentials to render good palliative care.
It is emotionally demanding when foresight does not work and
nurses cannot do enough to help the patients. This can be
experienced as a defeat, for example, when a patient unwillingly
is transferred to hospital just because the foresight was lacking.
When caring for patients in their own homes, therefore, nurses
anticipate what might happen. It could be an extra prescription
for pain relief, or a preplanned direct transfer to a nursing home
if home care does not work. With a flexible planning, the patient
can stay at home during daytime and spend the night at a
nursing home.

Creating Trust

Creating trust is done by cultivating relationships with
patients and relatives and it promotes safety; “You have to get to
know the patient to be able to create trust”. This becomes easier
with experience and knowledge, but the nurses’ personalities are
also important in the process. Actually, the “personal chemistry”
between the nurse and the patient or relative can sometimes be
more important than experience to create trust. Nurses with high
emotional competence can show empathy and be honest with the
patient and relatives and this increases trust. The first meeting is
important since the first impression of the nurse and her attitude
affects how much the patient and relatives will trust her in the
future. It is easier to create mutual trust with patients and
relatives if nurses are engaged early in the palliative phase.
Therefore, the nurses, if possible, visit the patients in the hospital
before they return home. Insecurity is the biggest obstacle to
home care perceived by patients. If the patients do not feel safe,
anxiety will take over. The insecurity of relatives can also make it
impossible for patients to stay at home. This insecurity can be
prevented by the access to competent staff whenever the patient
or the relatives need them.

Collaborating

Collaboration with colleagues to discuss and assess the needs
of patients and relatives is essential when giving anticipatory
care; “You can’t do everything by yourself, you have to collaborate
when giving palliative care”. Sometimes nurses collaborate with
experts such as the oncology counseling team. They support
nurses in difficult situation of either a practical or of a more
psychosocial nature. The availability of the counseling team
increases nurses’ self-confidence and trust, which improves the
care. The continuity and availability of physicians increase trust
for both nurses and patients. Reciprocal respect between nurses
and physicians, therefore, is a prerequisite for Anticipatory
caring. When physicians and nurses do not share the same caring
perspective, this causes conflicts and difficulties in giving high
quality palliative care. Different opinions about the patients’ care
in the team can cause Momentary caring or even cause Stagnated
caring outcomes.

Prioritizing

Prioritizing is a prerequisite for Anticipatory care. Limited
caring resources leads to down prioritizing tasks that can wait
and patients not dying, and up prioritizing dying patients that
now become priority one. Time prioritizing is often done while
Anticipatory caring. Taking the time that does not exist may
increase the workload for other team colleagues although it is
considered legitimate to take more time with palliative patients;
“It causes a burden for my colleagues, but they know that it will
save them time in the future, because the patient will be
satisfied”. Investing in tasks that take more time momentarily
will eventually save time in the future.

Flexibility in the nurses’ daily work is important, but also
team flexibility, for example when a nurse does not have the
energy or the competence to care for the dying patient this can be
done by another nurse in the team; “When a nurse is in a
personal life situation that makes it difficult for her to care for
dying persons, we are flexible and change patients”. However,
there is thus a risk that flexibility decreases continuity of care for
the patients.

Emotional Survival Strategies while Giving
Anticipatory Care

The nurses’ desire of doing best or even better is emotionally
demanding, and creating trust requires dedication. Also, the
closeness to the patient and relatives can negatively affect the
nurses’ emotional health. Professional Shielding is used as a
protective attitude towards emotionally difficult situations. There
is a risk of loosing this professional shield and getting too close in
the patient-nurse relationship. The closeness limit can be subtle
and sometimes the relationship is taken over by the nurses when
their own private issues come in focus and not the patients’.

When nurses give Anticipatory care and experience feelings
of letting the patient down, this is mostly caused by unpredictable
situations out of the nurses’ own control. If the nurses did
everything in their power to do good, but it did not help the
patient this causes frustration, guilt and a sense of
powerlessness. These emotions are managed through Emotional
Processing, for example by using the strategies Self-reflecting and
Confirmation-seeking. When nurses reflect over what happened
in the trajectory of a dying patient in relation to doing best they
are Self-reflecting. They feel satisfied when they have done all
they could and this makes it easier to move on. Finishing a
trajectory is important to be able to move on. Finishing means for
example being present when the patient dies or talk about what
happened later with colleagues. When Confirmation-seeking,
nurses look for recognition from professional counseling,
colleagues, patients, relatives, and from their own family.
Recognition is necessary for building up self-confidence in order
to do best all the time. Without recognition, it is impossible to
keep on doing best and Anticipatory caring is turned into
Momentary caring.

Momentary Caring

Momentary caring involves temporary solutioning, which
means solving problems when they arise. The nurses are doing
best momentarily, which means doing as good as possible in every
situation. Momentary caring with a future view is used when
nurses have an anticipatory thinking but lack the resources to
render anticipatory care.

Temporary Solutioning

Temporary solutioning entails momentary prioritizing and
sporadic collaborating. Momentary prioritizing is often done
because of inadequate resources, which makes it difficult to be
one step ahead and plan for what might happen. In some
workplaces, it is not allowed to take the extra time that palliative
care requires. Therefore, nurses are momentarily prioritizing
without any future planning. Solving a problem when it arises
and if necessary, using their professional contacts to get
momentary help; “When a problem arises, we try to solve it and
do as good as we can”. They are doing as good as they can under
the circumstances and use temporary solutions, which can lead to
patients not receiving optimal care.

Sporadic collaborating is done if necessary, but nurses
often handle problems themselves. The uncertainty is a thrill and
it is a challenge that motivates them because “you never know
what will happen”. Nurses may have tried collaboration before,
but not succeeded. This in turn can be explained by incoherent
care goals. By sporadic collaborating with the palliative
counseling team, some temporary solutioning facilitates for the
nurses. Sporadic collaborating with physicians is often caused by
a lack of continuity of physicians and unclear patient
responsibilities. Sometimes the nurses feel trapped between the
hospital physician and the general practitioner. A limited
sporadic collaboration may lead to a decreased understanding
and communication between the communities and the hospitals.
Sporadic contacts might not be enough, for example, to prevent
an unnecessary hospital admission. Nurses giving Momentary
care also create trust and promote safety. However, it can be
difficult to create trust when collaboration is sporadic and
patients do not know what to expect. It is often difficult to create
trust when patients return home from hospital in a late palliative
care phase, and without anticipatory care planning.

Emotional Survival Strategies while Giving
Momentary Care

The nurses’ desire to do good care drives them to try to
change the circumstances. Their intentions are good but they
cannot do all they want due to limited resources, a lack of
guidelines and so on. Instead, they increase their palliative care
knowledge by education or reading literature. Feelings of letting
the patient down often depends on knowing what should have
been done, but because of lack of knowledge or lack of resources
the patients did not receive a good enough care. This can lead to
giving up the struggle to improve the care and risking burnout
symptoms. They feel that it does not matter what they are doing
any more. Nurses giving momentary care sometimes have the
tendency to take over the relationship to become the patients’
favorite nurse. Therefore, at the same time as they feel that they
have to give a lot and sometimes sacrifice themselves, they think
it is worth it.

In momentary care, nurses also use the strategy of
professional shielding as an emotional protection, but they risk
loosing the shield if recognition is lacking. Receiving recognition
and confirmation is necessary for continuing momentary care.
Emotional processing while momentary caring is mostly done
through confirmation-seeking and chatting. Chatting means
taking a break just to chat with colleagues or someone else
shortly after a difficult situation to get some confirmation. To
hear that they are doing good and that their care giving is fine is
vital in momentary care. Lack of confirmation and recognition
leads to “future fear” and “future neglect”. This means that
nurses neither have the energy nor the motivation to think of
what might happen in the future, and they are afraid of what the
future might bring. This reduces the possibility of advance
planning and results in feelings of resignation. If the nurses at
the same time consider that they could not give the care that they
wanted they get more and more frustrated. To deal with this
frustration they may start to ruminate, which means pondering
the situation without any positive results or they postpone the
emotions with or without the intention of dealing with them later.
Using these two strategies eventually leads to a stagnated caring
behavior.

Stagnated Caring

Stagnated caring entails avoiding changes and resigning.
Stagnated caring can be a consequence of decreased recognition
when giving momentary care making the nurses resign and give
up. It can also be caused by the nurses’ low emotional competence
and their own fear of death. Nurses giving stagnated care are
doing what is expected of them. They are also driven by a desire
of doing good, but they are satisfied with the care they give and
cannot see any reasons for changing it.

Avoiding Changes

By avoiding challenges, nurses avoid changes in order to
protect themselves. Challenges often cause changes both for the
nurse herself, for example her attitudes, and for the organization,
for example work changes. Nurses giving stagnated care protect
themselves against changes or challenges since this requires
more effort than the nurses can handle. In addition, nurses lack
the capacity to deal with the consequences of the changes. This
lack of capacity can be caused by own fear and lack of selfconfidence,
but also by lack of emotional competence, experience
and palliative care knowledge. A pending attitude of suspicion or
distrust towards new technical equipment and new techniques is
common. Nurses in stagnated care do problem solving on their
own because they do not see any reason for involving other
people; “We have always managed this by ourselves before. Why
do we need experts now?” This is often related to decreased
communication with the hospitals, which may lead to reduced
trust and quality of care for the patients.

Resigning

Resigning is part of stagnated caring. Resigning can be
caused by either giving up, or a lack of emotional capacity to care
for dying persons. Giving up is a more common cause of stagnated
care than lack of emotional capacity. Giving up means that
nurses have gone from anticipatory or momentary caring to
stagnated caring. This is often caused by a lack of recognition or
adequate resources leading to frustration, powerlessness and
decreased energy; “It’s no use to try anymore. I have tried before
but without any success”. Without energy, it is easy to give up
and resign, which may lead to cold shielding, an unconscious
emotional protection with a cold distance to the patients and
relatives. A lack of emotional competence to care for dying is a
more rare cause of resigning. Without the emotional sensitivity
necessary to care for dying persons it is hard to create trust and
predict what might happen. Lack of emotional competence leads
to difficulties to receive critique and causes emotional fear, which
then leads to postponing emotions.

Emotional Survival Strategies while Giving Stagnated
Care

When nurses think they are doing as good as they can and
are not trying to do more or to change their way of caring, they
are doing what is expected of them and nothing more. They do
not believe that they can do anything different and that it does
not matter what they are doing. The attitude of not having the
responsibility of life and death becomes a false safety protection.
This can also be an excuse for not involving oneself more than
necessary, which can lead to a routine manner care.

Nurses in stagnated caring are normally less emotionally
involved in their patients than nurses who give anticipatory or
momentary care. When stagnated care nurses are emotionally
processing what happened, they believe they did what was
expected and that they could not influence the situation. They
lack the energy or emotional competence to deal with difficult
emotions that arise. Postponing emotions without processing
them leads to cold shielding. This in turn leads to a false sense of
satisfaction where nurses sincerely believe that there is nothing
more to improve. They are not aware of this cold distance that
may decrease the quality of the given care. Therefore, they do not
take advantage of resources that may exist to improve the care
quality. Either they do not have the emotional competence or the
knowledge to improve the care, or they have resigned from
Momentary caring and have no energy left.

Discussion

In this grounded theory, we found that the main concern for
nurses caring for palliative cancer patients in basic homecare is
their desire of doing good care. The nurses use different caring
behaviors to handle this “do-good-desire” with anticipatory caring
as the optimal behavior. However, the most common caring
behavior is momentary caring. Stagnated care is less common but
can cause serious consequences for the nurses, patients and
relatives. When nurses fail in doing good care, depending on their
caring behavior, they use different strategies such as emotional
shielding, emotional processing and emotional postponing as seen
in a previous study (Sandgren et al., 2006). Yet, this triad
typology of caring behavior does not represent the nurses’ entire
being or doing. The nurses are surely engaged in other patterns of
behavior that need to be further explored. It should also be
emphasized that the context in this study was nursing in basic
homecare, not advanced palliative homecare, which has a
different caring philosophy (Andershed & Ternestedt, 1997). The
prerequisites for palliative homecare differ from place to place,
but there are commonalities. Community nurses usually care for
only a few cancer patients at a time and therefore have more time
for dying patients. Goodman et al. (1998) found that it is
legitimate to take extra time and ask for more resources when
caring for dying patients. With more and more people wanting to
be cared for and also die in their own homes (O’Neill & Rodway,
1998; Socialstyrelsen, 2006), homecare eventually will involve
more palliative care in the future (Fürst, 2000). To meet this
demand basic homecare need input from the hospice philosophy
and other resources to give high quality palliative care.

Doing good is indeed a common nursing concept (Avis,
Jackson, Cox & Miskella, 1999; Freeman, Ekins & Oliver, 2005;
Tishelman et al., 2004). The need to “do good” or act for what was
deemed the best, could actually be in conflict with the patients’
wishes (Tishelman et al., 2004). This could be compared with
anticipatory caring when nurses want to do their best or even
better but feel that it does not work out. The risk of feeling that
one has “let the patient down” is greater when giving anticipatory
care or momentary care than when giving stagnated care,
depending on the use of cold shielding during stagnated care.
Giving momentary care requires lots of commitment and without
recognition there is a great risk of stagnation or burnout
symptoms. Other studies also found frustration and
powerlessness while nursing (BerterÖ, 2002; de Schepper et al.,
1997) and among relatives caring for patients at home (Milberg,
2003).

Anticipatory care has earlier been addressed in studies in
nursing, cancer care, and primary care but with various
definitions (Crebolder & van der Horst, 1996; Howarth &
Willison, 1995; Kearney, 1999; Pridham, Hansen & Conrad, 1979;
Wros, Doutrich & Izumi, 2004). To be able to give Anticipatory
care, both internal and external resources are needed, but
Tishelman et al. (2004) found that there is a tension between care
giving ideals and the problematic realities of daily work, for
example limitations in time and space for the staff. In our study,
we found that early contact with the patient is essential and that
homecare nurses sometimes contact the patient already in the
hospital. Griffiths et al. (2007) also showed the importance of an
early contact. Yet, Pateman, Wilson, McHugh and Luker (2003)
found that patients could experience this early contact as
negative. Our concept of creating trust and safety therefore, plays
an important role in the early contact to avoid the negative
aspects of an early contact. Appelin and Berterö (2004) found that
patients felt secure when they sensed that nurses created safety
by being sensitive, competent, and professional. O’Neill and
Rodway (1998) showed that patients were more likely to seek
admission to hospital if they were insecure or lacked confidence
in their support network at home. Patients were also admitted to
hospital as a result of inadequate management of symptoms
(Addington-Hall, Altmann & McCarthy, 1998) or inadequate
practical help at home (O’Neill & Rodway, 1998). Dunne et al.
(2005) argue that if nurses were more aware of how to control
symptoms, the patients could remain in their own environment to
die. Yet, we found that in momentary caring many nurses could
not manage this without collaboration with physicians. Adequate
resources therefore seem essential so that nurses stay in
anticipatory caring and decrease the risk of switching to
momentary or stagnated caring.

Avis et al. (1999) found that caregivers were often anxious
about not ‘doing enough’ for the dying patients. To minimize
feelings of guilt, Irurita and Williams (2001) saw that some
nurses ignored cues given by patients and only approached
patients when necessary. This behavior resembles the cold
shielding strategy (Sandgren et al., 2006) used in stagnated care.
Momentary caring is an emotionally demanding behavior with
risk of loosing the professional shield if recognition and resources
are lacking. Luker et al. (2000) claim that it is more emotionally
demanding to get to know patients and relatives in their own
homes than in hospitals. However, we found in an earlier study,
that hospital nurses were constantly at risk of emotional
overload, not because they got to know patients too well, but
rather too little (Sandgren et al., 2006). Öhman and Söderberg
(2004) found that homecare nurses were invited to share patients’
intimacy and their experiences of being ill which led to close
relationships. De Schepper et al. (1997) suggested that nurses
should stand back when getting too close and let someone else
take over. In anticipatory caring there is an awareness of the risk
of getting too close while Momentary caring often lacks this
awareness. Therefore, there is a higher risk of burnout or a
transfer to stagnated caring from momentary caring than from
anticipatory caring.

Lack of emotional competence is one cause of stagnated
caring. Nurses can see the symptoms and practical things that
have to be done, but are avoiding the emotional needs. This can
be compared with seeing the diagnosis but not the whole person
behind the diagnosis, which can depend on a lack of energy or
competence to handle the emotions (Georges, Grypdonck &
Dierckx de Casterle, 2002). Dunne et al. (2005) also found that
some community nurses had difficulties in communicating with
dying and relatives. We found that lack of emotional competence
can cause cold shielding, a cold distance towards patients and
relatives. Through professional counseling and continual
feedback, the emotional competence can increase, which may lead
to a transfer from stagnated caring over to momentary caring.

Conclusion and Implications

Our study contributes to existing knowledge with a theory
presenting a typology of caring behaviors, which provides a
comprehensive framework for understanding how community
nurses give palliative care in basic homecare. Although the
theory emerged from data concerned with community nursing,
the theory might well be expanded to other areas, contributing to
a general understanding of how people deal with their desire to
do good. The theory “Doing Good Care” is a complex theory and
further research is needed to understand how nurses’ caring
behaviors affect patients and relatives.

All nurses should have the opportunity to give anticipatory
care, which is the optimal way of caring. Health care providers
thus need to increase palliative homecare resources as well as the
status of caregivers through adequate recognition. The first step
could be helping nurses to avoid stagnated caring by giving them
recognition. Then with the right resources, both internal and
external, anticipatory caring is possible.

Acknowledgements

This project was funded by “Cancerstiftelsen i Kronobergs
län”, the Kronoberg County Research Center, the Regional
Council of Health Care in Region Skåne and “Stiftelsen Ulrika
Cronés fond”. The authors wish to thank Dr Barney Glaser for
invaluable support.

Authors

Anna Sandgren,RN,MSc
PhD Candidate
School of Health Sciences and Social Work
Växjö University and
Kronoberg County Research Center
Växjö, Sweden

Hans Thulesius, MD, PhD
Kronoberg County Research Center
Växjö, Sweden

Kerstin Petersson, RNT, PhD
Associate Professor
Kronoberg County Research Center
Växjö, Sweden

Bengt Fridlund, RNT, PhD
Professor
School of Health Sciences
Jönköping University, Sweden

 

References

Addington-Hall, J., Altmann, D., & McCarthy, M. (1998). Which
terminally ill cancer patients receive hospice in-patient
care? Social Science & Medicine, 46(8), 1011-1016.

Andershed, B., & Ternestedt, B. M. (1997). Patterns of care for
patients with cancer before and after the establishment of
a hospice ward. Scandinavian Journal of Caring Sciences,
11(1), 42-50.

Appelin, G., & Berterö, C. (2004). Patients’ experiences of
palliative care in the home. A phenomenological study of
a Swedish sample. Cancer Nursing, 27(1), 65-70.

Avis, M., Jackson, J. G., Cox, K., & Miskella, C. (1999).
Evaluation of a project providing community palliative
care support to nursing homes. Health and Social Care in
the Community, 7(1), 32-38.

Berterö, C. (2002). District nurses’ perceptions of palliative care
in the home. American Journal of Hospice & Palliative
Care, 19(6), 387-391.

Burge, F., Lawson, B., & Johnston, G. (2003). Trends in the place
of death of cancer patients, 1992-1997. Canadian Medical
Association Journal, 168, 265-270.

Clark, D. (1993). Whither the hospices? In: Clark, D. (Ed.). The
future for palliative care. Issues of policy and practice (pp.
167-177). Philadelphia: Open University Press.

Crebolder, H. F., & van der Horst, F. G. (1996). Anticipatory care
and the role of Dutch general practice in health
promotion–a critical reflection. Patient Education &
Counseling, 28(1), 51-55.

de Schepper, A. M., Francke, A. L., & Abu-Saad, H. H. (1997).
Feelings of powerlessness in relation to pain: Ascribed
causes and reported strategies. A qualitative study among
Dutch community nurses caring for cancer patients with
pain. Cancer Nursing, 20(6), 422-429.

Dunne, K., Sullivan, K., & Kernohan, G. (2005). Palliative care
for patients with cancer: District nurses’ experiences.
Journal of Advanced Nursing, 50(4), 372-380.

Freeman, R., Ekins, R. & Oliver, M. (2005). Doing best for
children: an emerging grounded theory of parents’
policing strategies to regulate between meal snacking.
The Grounded Theory Review, 4(3), 59-79.

Fürst, C. J. (2000). Perspectives on palliative care: Sweden.
Support Care Cancer, 8(6), 441-443.

Georges, J. J., Grypdonck, M., & Dierckx de Casterle, B. (2002).
Being a palliative care nurse in an academic hospital: A
qualitative study about nurses’ perceptions of palliative
care nursing. Journal of Clinical Nursing, 11(6), 785-793.

Glaser, B. (1978). Theoretical sensitivity. Mill Valley, CA:
Sociology Press.

Glaser, B. (1998). Doing grounded theory: Issues and discussions.
Mill Valley, CA: Sociology Press.

Glaser, B. (2001). The grounded theory perspective:
Conceptualization contrasted with description. Mill
Valley, CA: Sociology Press.

Glaser, B. (2003). The grounded theory perspective II. Mill Valley,
CA: Sociology Press.

Glaser, B. (2005). The grounded theory perspective III. Theoretical
coding. Mill Valley, CA: Sociology Press.

Glaser, B., & Strauss, A. (1967). The discovery of grounded theory:
Strategies for qualitative research. Mill Valley, CA:
Sociology Press.

Goodman, C., Knight, D., Machen, I., & Hunt, B. (1998).
Emphasizing terminal care as district nursing work: A
helpful strategy in a purchasing environment? Journal of
Advanced Nursing, 28(3), 491-498.

Griffiths, J., Ewing, G., Rogers, M., Barclay, S., Martin, A.,
McCabe, J. & Todd, C. (2007). Supporting cancer patients
with palliative care needs. District nurses’ role
perceptions. Cancer Nursing, 30(2), 156-162.

Higginson, I.J., Astin, P., & Dolan, S. (1998). Where do cancer
patients die? Ten-years trends in the place of death of
cancer patients in England. Palliative Medicine, 12(5),
353-363.

Howarth, G., & Willison, K. B. (1995). Preventing crises in
palliative care in the home. Role of family physicians and
nurses. Canadian Family Physician, 41, 439-445.

Irurita, VF., & Williams, AM. (2001). Balancing and
compromising: nurses and patients preserving integrity of
self and each other. International Journal of Nursing
Studies, 38, 579–589.

Kearney, N. (1999). New strategies in the management of cancer.
Cancer Nursing, 22(1), 28-33.

Luker, K. A., Austin, L., Caress, A., & Hallett, C. E. (2000). The
importance of ‘knowing the patient’: Community nurses’
constructions of quality in providing palliative care.
Journal of Advanced Nursing, 31(4), 775-782.

Milberg, A. (2003). Family members’ experience of palliative home
care. Doctoral dissertation. Division of Geriatrics,
Department of Neuroscience and Locomotion, Faculty of
Health Sciences and Division of Oncology, Department of
Biomedicine and Surgery, Faculty of Health Sciences,
Linköping University, Sweden.

O’Neill, B., & Rodway, A. (1998). Abc of palliative care. Care in
the community. British Medical Journal, 316(7128), 373-
377.

Pateman, B., Wilson, K., McHugh, G., & Luker, K.A. (2003).
Continuing care after cancer treatment. Journal of
Advanced Nursing, 44(2), 192-199.

Pridham, K. F., Hansen, M. F., & Conrad, H. H. (1979).
Anticipatory problem solving: Models for clinical practice
and research. Sociology of Health and Illness, 1(2), 177-
194.

Sandgren, A., Thulesius, H., Fridlund, B., & Petersson, K. (2006).
Striving for emotional survival in palliative cancer
nursing. Qualitative Health Research, 16(1), 79-96.

Socialstyrelsen. (2006). End of life care. [Vård i livets slutskede.
Socialstyrelsens bedömning av utvecklingen i landsting
och kommuner]. Stockholm: Socialstyrelsen.

SOU. (2001). Death concerns us all – care with dignity at the end
of life. [Döden angår oss alla – värdig vård vid livets slut].
Stockholm: SOU 2001:6.

Thulesius, H., Håkansson, A., & Petersson, K. (2003). Balancing:
a basic process in end-of-life cancer care. Qualitative
Health Research, 10, 1353-1377.

Tishelman, C., Bernhardson, B. M., Blomberg, K., Börjeson, S.,
Franklin, L., Johansson, E., Levealahti, H., Sahlberg-
Blom, E., & Ternestedt, B.M. (2004). Complexity in caring
for patients with advanced cancer. Journal of Advanced
Nursing, 45(4), 420-429.

Wright, K. (2002). Caring for the terminally ill: The district
nurse’s perspective. British Journal of Nursing, 11(18),
1180-1185.

Wros, P. L., Doutrich, D., & Izumi, S. (2004). Ethical concerns:
Comparison of values from two cultures. Nursing and
Health Sciences, 6(2), 131-140.

Öhman, M., & Söderberg, S. (2004). District nursing – sharing an
understanding by being present. Experiences of
encounters with people with serious chronic illness and
their close relatives in their homes. Journal of Clinical
Nursing, 13, 858-866.

Facebooktwittergoogle_plusredditpinterestlinkedinmail