Article

Nurses perceptions of patient

participation in hemodialysis
treatment

Nursing Ethics
19(3) 419430
The Author(s) 2012
Reprints and permission:
sagepub.co.uk/journalsPermissions.nav
10.1177/0969733011429015
nej.sagepub.com

Elin Margrethe Aasen

Aalesund University College, Norway

Marit Kvangarsnes
Aalesund University College, Norway

Kare Heggen
Volda University College, Norway

Abstract
The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old
undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about
what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three
discursive practices are found: (1) the nurses power and control; (2) sharing power with the patient;
and (3) transferring power to the next of kin. The first and the predominant discursive practice can be
explained with an ideology of paternalism, in which the nurses used biomedical explanations and the
ethical principle of benefice to justify their actions. The second can be explained with an ideology of
participation, in which the nurses used ethical narratives as a way to let the patients participate in the
treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy
for the next of kin in the difficult end-of-life decisions.
Keywords
Hemodialysis, elderly, patient participation, critical discourse analysis, next of kin

Introduction
In newer public documents, we find an ideology that underlines the rights of patients to participate, to
influence and to make personal choices.1,2 According to Norwegian law,1,3 nurses are obligated to provide
an acceptable level of health assistance to patients and their family members and to allow patients and their
family members to participate in the planning of patient care and treatment. This article focuses on how
nurses perceive patient participation in dialysis units, that is the way in which patients over 75 years undergoing hemodialysis and their next of kin participate and interact with the clinical team.
Paternalistic ideology, in which patients are assumed to comply and play minimal and passive roles, has
dominated health care.4,5 Moving from a paternalistic ideology to one of participation involves establishing
a different type of relationship between patients and nurses, in which the nurses have to involve patients and

Corresponding author: Elin Margrethe Aasen, Aalesund University College, Box 1517, N- 6025 Aalesund, Norway
E-mail: ea@hials.no

420

Nursing Ethics 19(3)

share power with them.68 Participation requires, however, dialogue with shared information and knowledge and mutual engagement in intellectual and/or physical activities and shared decisions.67
Participation might be influenced by the illness, other characteristics of the individuals involved and the
context.7,912 Generally, nurses may use various strategies to promote patient participation, such as establishing close cooperation with patients, getting to know patients on an individual basis and reinforcing selfcare capacity. However, patients have identified several barriers to their participation, including their own
inability, lack of empathy and paternalistic attitude shown by members of the clinical team as well as structural barriers.11,13,14
Older patients are often described as frail with complex medical problems and stressors such as fluid
restrictions and fatigue,1517 and they are often depressed.18 Hemodialysis units have been described as
having dehumanizing effects on them.19,20 Research has indicated that nurses working in hemodialysis units
have a biomedical focus and that the complex needs of older patients undergoing hemodialysis are not often
met.21 A systematic review of studies published before 2009 found that there was a gap in the knowledge on
how to meet the decision-making needs of patients living with end-stage renal disease.22 Some recent studies have shown that shared decision-making is important from the time when renal failure is diagnosed to
when end-of-life decisions need to be addressed,23 and that patients are willing to make their own end-oflife decisions.24 The decision-making process for life-sustaining treatment for dialysis patients has been
characterized by nurses as being fraught with uncertainty and lacking in communication and collaboration.25 Murtagh26 states that patients with high co-morbidity should not be considered for dialysis but for
palliative treatment and care.
Studies have revealed that, according to nurses, the three moral problems most frequently encountered
with dialysis treatment are the following: (1) continuation/discontinuation of dialysis; (2) patient noncompliance; and (3) patients wishes versus caregivers professional expertise.27 However, research has
shown that nurses faced with ethical dilemmas tend to use conventional ways of thinking as their predominant decision-guided criteria rather than patients personal needs and well-being.28

Theoretical framework
The present study is based on Faircloughs29 statement that discourses not only influence social practice but
also are influenced by it. Fairclough30 defined discourse as a particular way of representing particular aspects
of social life. One assumption of critical discourse analysis is that language constructs how individuals think
about relationships, identity, knowledge and power,31 which are all central concepts, according to patient participation.6,7 This idea represents a social constructivist way of thinking. It claims that the social world is
socially constructed30 and that human beings do not find or discover knowledge but rather construct or make
it.32 Fairclough29,31 identified ideology and hegemony as central concepts of discourse. Ideology, defined as a
set of beliefs and attitudes shared by members of a particular group, refers to the dominant discourse in a field.
Hegemony refers to the social struggle for dominance as ideological meanings are established.
Allowing older patients to participate in the hemodialysis treatment might raise ethical questions. The
traditional principles of ethics are based on rational principles. Two important principles are (1) the principle of benefice, which is based on the acts of mercy, kindness and charity and (2) the principle of autonomy, which is based on equal respect for individuals.5 However, in some situations it is necessary to move
behind the principles of ethics to the situational ethics in which individuals are perceived as relational.33
Because individuals are particular, situated and self-interpreting, the most faithful way of knowing the good
they seek is through their own accounts, their personal narratives; that is, the ethical narratives created by
the patients and the nurses.33
The aim of this study is to explore how nurses perceive patient participation of older patients undergoing
hemodialysis treatment in dialysis units, and of their next of kin.

420

Nursing Ethics 19(3)

share power with them.68 Participation requires, however, dialogue with shared information and knowledge and mutual engagement in intellectual and/or physical activities and shared decisions.67
Participation might be influenced by the illness, other characteristics of the individuals involved and the
context.7,912 Generally, nurses may use various strategies to promote patient participation, such as establishing close cooperation with patients, getting to know patients on an individual basis and reinforcing selfcare capacity. However, patients have identified several barriers to their participation, including their own
inability, lack of empathy and paternalistic attitude shown by members of the clinical team as well as structural barriers.11,13,14
Older patients are often described as frail with complex medical problems and stressors such as fluid
restrictions and fatigue,1517 and they are often depressed.18 Hemodialysis units have been described as
having dehumanizing effects on them.19,20 Research has indicated that nurses working in hemodialysis units
have a biomedical focus and that the complex needs of older patients undergoing hemodialysis are not often
met.21 A systematic review of studies published before 2009 found that there was a gap in the knowledge on
how to meet the decision-making needs of patients living with end-stage renal disease.22 Some recent studies have shown that shared decision-making is important from the time when renal failure is diagnosed to
when end-of-life decisions need to be addressed,23 and that patients are willing to make their own end-oflife decisions.24 The decision-making process for life-sustaining treatment for dialysis patients has been
characterized by nurses as being fraught with uncertainty and lacking in communication and collaboration.25 Murtagh26 states that patients with high co-morbidity should not be considered for dialysis but for
palliative treatment and care.
Studies have revealed that, according to nurses, the three moral problems most frequently encountered
with dialysis treatment are the following: (1) continuation/discontinuation of dialysis; (2) patient noncompliance; and (3) patients wishes versus caregivers professional expertise.27 However, research has
shown that nurses faced with ethical dilemmas tend to use conventional ways of thinking as their predominant decision-guided criteria rather than patients personal needs and well-being.28

Theoretical framework
The present study is based on Faircloughs29 statement that discourses not only influence social practice but
also are influenced by it. Fairclough30 defined discourse as a particular way of representing particular aspects
of social life. One assumption of critical discourse analysis is that language constructs how individuals think
about relationships, identity, knowledge and power,31 which are all central concepts, according to patient participation.6,7 This idea represents a social constructivist way of thinking. It claims that the social world is
socially constructed30 and that human beings do not find or discover knowledge but rather construct or make
it.32 Fairclough29,31 identified ideology and hegemony as central concepts of discourse. Ideology, defined as a
set of beliefs and attitudes shared by members of a particular group, refers to the dominant discourse in a field.
Hegemony refers to the social struggle for dominance as ideological meanings are established.
Allowing older patients to participate in the hemodialysis treatment might raise ethical questions. The
traditional principles of ethics are based on rational principles. Two important principles are (1) the principle of benefice, which is based on the acts of mercy, kindness and charity and (2) the principle of autonomy, which is based on equal respect for individuals.5 However, in some situations it is necessary to move
behind the principles of ethics to the situational ethics in which individuals are perceived as relational.33
Because individuals are particular, situated and self-interpreting, the most faithful way of knowing the good
they seek is through their own accounts, their personal narratives; that is, the ethical narratives created by
the patients and the nurses.33
The aim of this study is to explore how nurses perceive patient participation of older patients undergoing
hemodialysis treatment in dialysis units, and of their next of kin.

Aasen et al.

421

Research question
How do nurses perceive the way in which patients over 75 years undergoing hemodialysis and their next of
kin participate in treatment and interact with the clinical team?

The study
Design
The study adopts an explorative qualitative approach using nurses stories and discourse analysis as outlined
by Fairclough.2931

Participants
Five hospitals in eastern and western Norway with 14, 14, 40, 60 and 60 patients, respectively, were
included in the study. Ten nurses were interviewed 1, 1, 2, 3 and 3 nurses respectively at each dialysis
units. The inclusion criterion for nurses was at least 2 years work experience in a dialysis unit. During
the period from January to December 2008, 10 nurses were interviewed: three were interviewed outside
the hospital and seven were interviewed in a suitable room in the hospital. A contact nurse selected
nurses to participate at the first authors request, based on the aim of including participants with different clinical experiences.

Data collection
Data were collected through the use of qualitative interviews in the form of narratives. Polkinghorne34 made
the term story equivalent to narrative and pointed out that narrative is the primary form by which human
experiences are made meaningful. The concept of narrative is a collective term about data as life stories and
descriptions of situations and ethical dilemmas.35
The nurses were first asked to speak about themselves and the structure of the dialysis units. Then the
nurses were asked, with respect to the rights of patients and family members,1 to describe what happened
in the dialysis units and how they cared for and treated those patients undergoing hemodialysis specifically those who were over 75 years old and were not to be transplanted and their family members. The
information gathered from the interviews covered the patients entire course of treatment, from the beginning of hemodialysis to the end of life. From the information gathered about practical events/situations that
occurred in the dialysis units, we obtained data about the nurses description of the interaction between
nurses and patients and their next of kin.
The interviewer herself had extensive experience in hemodialysis nursing for 15 years, and was
familiar with the terminology of dialysis. The interviewer followed up by going after the structure
of the stories34 and helped the nurses to construct their stories by asking open-ended and critical questions36 such as Can you please tell me more about this event?, What happened then? and Did you
ask for the patients opinion? In that way the possibilities of asking leading questions were minimized. However, the researcher is always part of the interview process and certain events might
receive greater attention than others. The first author of the present study conducted and taperecorded all of the interviews and then transcribed, word for word, the interviews shortly thereafter.
The interviews were critically evaluated throughout the creation of the data and the analysis process
by listening to the stories several times and by discussing the interpretation with the other authors,
who also listened to parts of the stories.

422

Nursing Ethics 19(3)

Ethical considerations
This study was conducted according to the rules of the Helsinki Declaration of 2002. Permission to carry out
the research was granted by the Regional Committee for Medical and Health Research Ethics of MidNorway and by the participating hospitals. Data collection followed the guidelines of the Data Inspectorate
of Norway. The nurses gave written consent to participate and to allow the interviews to be recorded. The
researcher assured the participants by letter that the tape-recorded interviews would be deleted after
transcription.

Data analysis
Critical discourse analysis was applied to describe, interpret and explain the data.2931 The analysis was
conducted in a three-step process:
Description of the text. The transcribed interviews were first analyzed linguistically30,31 using the following questions: What words did the nurse use to describe the situations and the interaction between
actors? Did nurses use words of appraisal, or plus and minus words? What modalities (e.g. modal auxiliary
verbs such as must and can) and metaphors were used? The modality in the sentences expresses the level
of power in the interaction between individuals. Metaphors, along with our systems of knowledge and
beliefs, structure the way we think and act in a pervasive and fundamental way.30 The text was then examined for themes.
Interpretation of the discursive practice. The themes were interpreted on the basis of the linguistic
analysis, the perspective of the concept of participation, the processes of the qualitative interview and the
researchers understanding.29,31 Then the interdiscursivity was analyzed by examining the particular mix of
genres and styles of discourses,30 that is how different discourses were expressed in the text. In the present
study the modality in the sentences indicates the power in the interaction between the nurses and the patient
or the next-of-kin, and when the power changed, the style changed.
Explain the discourse as social practice. Finally, the relationship between the discursive practice and the
social practice was explained,29,31 guided by social theories. In the present study, these theories are based
on the concept of participation,6,7 the concept of ideology and hegemony in Faircloughs theory of discourse29,31 and ethical theory.5,33
The description of the text and the interpretation of the discursive practice are presented in the Findings
section, and the discursive practice is explained as a social practice in the Discussion section.

Findings
Three of the nurses were aged between 30 and 39 years and seven were aged between 40 and 50 years. Six
had worked for 614 years and four had worked for 1525 years in a dialysis unit. Two of them had, at the
time of interview, a leading function. Each nurse was responsible for three to five patients. Lying side by
side, the patients were connected to the dialysis machine for 24 hours, two or three times a week. The
nurses treated the patients during daytime hours 6 days a week. Four of the five dialysis units offer a kidney school for patients and their families to attend before the patients begin dialysis.
From the perspective of participation, the following three styles of discursive practices were found: (1) the
nurses power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin.

Nurses power and control

Frail older patients in the context of the dialysis units. The following excerpt is a typical description of the older
patients in the context of the dialysis units:

Aasen et al.

423

[In] the last years, there has been an explosion in the number of dialysis patients . . . and there are a lot of older
patients. Older patients are particularly difficult to treat in dialysis . . . They have so many additional diagnoses
. . . and to remove fluid is difficult . . . Many of them are very frail when we start dialysis . . . maybe critical ill,
and then all the decisions are done, and thats the way it is.
(N4)

When the nurses talked about older patients undergoing hemodialysis, they often used the personal pronoun
them and the term older people; they refer to the patients as a group and never use the word we when
referring to the patients and the nurses. When referring to these older patients they employed words of
appraisal, such as difficult and frail. The patients frailness and age were used as arguments for not
involving them in decision-making processes. The nurses power and control are especially visible in the
strong modality of the expression thats the way it is.
The nurses were also focused on finding ways to improve their patients quality of life in the context of
the dialysis units.
Older people will be here until they die . . . . We should make this world meaningful for them; it requires
resources. It should not only be a storage space . . . a postponement of death but an extension of life in a positive
way. It should be quality of life . . . Some days I feel that we are just running the factory.
(N1)

This nurses use of certain words of appraisal, such as quality of life and meaningful, were connected to
interpersonal modality; that is, we should make, with the personal pronoun we referring to the nurses. It
also seems that the nurses tried to exercise control over the patients subjective feelings. The use of the
metaphor factory and the word resources suggests that nurses endeavor to work for their patients but
encounter some obstacles. One of the nurses (N1) used the metaphor factory to describe the context of the
dialysis unit. A factory will usually focus on production, not human relations.
Dealing with patient passivity. Several of the nurses classified older patients undergoing hemodialysis as a passive group. One (N8) commented, When you are 75 years, you accept what you get, and you do not
demand. Should you have a transplant, you are more active. Another (N3) remarked, I think they adapt
to what we say . . . very few who have special wishes. Several nurses talked about how difficult it was
to get patients to understand their treatment. One (N2) stated the following: It is to explain and explain and
explain, and its not so easy with the elderly . . . It is not so many who want to learn. One (N5) explained the
situation as follows: We have the responsibility, and we decide . . . I think they hand over a great deal to us.
The passivity of the patients is visible in the nurses use of words of appraisal, such as accept and do not
demand and in minus words, such as few. The interpersonal modality the nurses power is visible in
the nurses use of the personal pronoun we and the verbs explain and decide when referring to themselves and their actions, respectively.
We become people of power. The nurses tried to take control over their patients treatment, but not all of
the patients passively accepted the treatment that was set for them. To gain control over the patients
treatment, the nurses might sometimes override the patients wishes. One nurse (N3) described the situation as follows:
There is a man who needs more dialysis because he has so much fluid to be removed. And with a sick heart, it is
hard to remove enough water . . . Weve tried to tell him that it can become . . . too much for his heart . . . He
expresses that he does not want more hours in dialysis and sighs, Yes, yes, you get what you wish . . . It is not
the way it should be . . . It is a treatment offer, but he gets overridden . . . and that is so wrong . . . We become
people of power who dispense our knowledge, without listening to the patient.

424

Nursing Ethics 19(3)

This patients situation is typical of most of the stories. The nurses explained and justified their actions
based on the seriousness of their patients illness: more dialyses, sick heart and so much fluid. However, the modality of the sentence (you get what you wish, person of power, overridden, it should be a
treatment offer) and the negative words (that is wrong) show that some of them reflected on their power as
professionals.
Getting patients bodies in physiological balance. The nurses in the present study took control and got their
patients bodies in physiological balance. One (N9) remarked, I used to say we dont play store . . .
when the patients ask, Can I get only two hours today . Patients lack of choice is also visible in the
following comment by another (N2): The number of hours a week is constant . . . If he has less than that,
he gets a poor quality of life . . . Youll be sicker and frail . . . We tell them . . . they really have no choice.
The issue of dry weight also showed the lack of choice for patients. One (N5) described the dry weight
issue as follows:
This with the dry weight is difficult . . . Many do not want to remove fluid down to the dry weight . . . But to
ask them What do you think we shall do today? I think is difficult. And you can see they are breathing heavily.

Patients undergoing hemodialysis require either a fistula or a catheter. All of the nurses interviewed for this
study noted that they preferred patients with a fistula because the rate of infection is lower. One (N7) stated:
We prefer fistula. We try to sell it as well as we can. This nurse used the word sell as a metaphor for how
she tried to convince the patients; that the patients did not have a real choice. The nurses control and power
and the patients powerlessness are visible in the interpersonal modality in sentences such as we tell them
and they really have no choice. The nurses justify their actions with words of appraising such as difficult
and poor quality of life.
Interacting with the next of kin. Because the next of kin were not present in the nurses stories, the researcher
(R) had to ask for them. The nurses remarked that they had very little contact with the next of kin and that,
when they did, it was almost always with the wives. In the following excerpt, one (N7) describes the involvement of the next of kin:
R: The next of kin, are they there?
N7: Very different. You have next of kin who are very visible . . . and call us. We have a communication book that
we have used for some patients when the patients do not take care of themselves . . . The next of kin is almost a
wife . . . We see . . . wives who are so actively involved in their husbands treatment that they almost kill themselves. One wife called us and said, I give up. I hear him locking himself in the bathroom, and he is drinking
water. She runs and looks after him all along. Then we [the nurses] thought that she should not have to do it
[anymore]. We stopped telling her . . . and then she felt that we have bad communication.

In the following interview excerpt, a nurse (N5) describes a lack of communication with the next of kin:
We have a patient . . . had to remove a lot of fluid . . . His blood pressure has fallen many times. The wife called
us and was angry because we do not care for her husband. I understand how she feels from the outside it looks
bad . . . There has not been any dialogue or call from them for meetings to get them to understand why things are
as they are.

In both interview excerpts, the nurses noted the extent of dialogue with the next of kin, and the interpersonal
modality expressed in the expressions we thought and to get them to understand shows that the nurses
had control and decided when the next of kin should be included or excluded.

Aasen et al.

425

Sharing power with the patients

However, some of the nurses texts have another style, where the perspective shifts from the nurses actions
to the patients wishes and actions.
Actively involved patients. In the following interview excerpt, a nurse (N4) describes one of her actively
involved patients:
She is extremely determined. She marks down the weight, how much fluid we have removed . . . She is extremely
interested and asks about the blood pressure and fluid removed, and she tells us when she feels cramp[s] and so
on . . . The machine is okay, but what we do with her body, she says, It is me who is ill. She is very
determined . . . She says, Today, I think we have to do it this way because last time I was like that . . . She wants
to participate, and we must listen to her.

When describing one of her actively involved patients, she (N4) used positive phrases, such as extremely
interested and very determined. The interpersonal modality of the expression we must listen to her
reveals that the power has shifted from the nurse to the patient.
Another nurse (N2) observed that actively involved patients share some common characteristics:
Those who are a little higher up in the social stratum, they impose more requirements . . . They ask more
questions . . . communicate clearly . . . what they expect and what they want.
Sharing knowledge and trusting the patient. Nurses who talked about actively involved patients also commented on how they get their patients to participate. In the following interview excerpt, one (N8) describes how
one patients ability to communicate influenced aspects of her treatment, and she uses the personal pronoun
we about nurse and patient:
One lady said, Today, I will not have removed more than 700 mL. She was very decided. And I accept . . . when
patients know their own body and as long as they have some insight into the illness. I will say that we accept the
fluid removed they want, or we together [with the patients].

Another nurse (N10) described a similar type of interaction with patients:

To get them to speak and tell a bit about how they feel with the disease, about what they understand about blood
pressure, water, food and pee, and that everything is [tied] together . . . I think they have everything they should
have said . . . I feel that the patients know . . . maybe better than us.

In this specific example, the patients power is visible in the interpersonal modality of the nurses use of
expressions, such as we ask, they have and I accept, and in the use of positive words, such as everything and better. By encouraging patients to share their knowledge and feelings, nurses begin to trust their
patients.

Transferring power to the next of kin

The third style of the nurses stories shifts the focus from the patients to the next of kin involvement. All of
the nurses interviewed for this study mentioned the difficulty associated with end-of-life decisions. One
(N3) commented, It is always difficult when the patient gets worse, when shall we stop the dialysis?
Another (N1) described the end-of-life decision-making process as follows:

426

Nursing Ethics 19(3)

I verify that I hear what the patient says and ask him to tell more, if he knows what it means not to be treated, and
talk about if he really does not want to live anymore . . . And we tell the physician . . . It is obviously difficult for
the physician.

In the following interview excerpt, a nurse (N2) describes how the conflicting opinions of those (i.e.
the patient, the nurses and the physician) involved in end-of-life decision-making can affect a
patients dignity:
I have treated a dying patient who was angry . . . he should [continue to] have dialysis. He said, I have said that
I do not want dialysis. The doctor said that he should be treated . . . We were angry because the doctor was not
present . . . And it happened again last time I was working with another patient [N2 sighs] . . . Is this a dignified end
of life?

The word of appraisal difficult was used by all of the nurses interviewed for this study when they
talked about end-of-life decision-making. These difficult situations created certain feelings. The nurses
used the word of appraisal angry and negative words, such as not present, when they talked about collaborating with physicians about when to stop dialysis. Avoiding the situation seemed to be considered the
easiest approach. One (N8) remarked, you . . . have to be a strong person . . . if you . . . deny treatment.
It is easier for the nurses and doctors to just treat the patients. However, someone has to make a decision.
According to the nurses interviewed for this study, patients typically approach the nurses and express their
wish to stop dialysis. The nurses then convey this wish to the physicians, who often leave it up to the next
of kin to make this decision.
In the following interview excerpt, a nurse (N8) describes how difficult the end-of-life decision-making
process becomes when the next of kin and the patients do not agree:
N8: A patient said he did not want dialysis . . . He had been treated a while and knew what it was. He refused the
dialysis again and again . . . but he had a wife and children . . . who wanted him to continue . . . It was difficult to
override the patients will; he expressed it clearly.
R: And the patient was competent?
N8: Yes, I think so . . . and he said it several times . . .
R: What happened?
N8: The patient lives, and the next of kin are very tired . . . The patient has struggled, but he has resigned, I feel.

The interpersonal modality of the expressions to override the patients will and he has resigned illustrates how patients feel powerless in this type of situation. The power of the next of kin is seen in the interpersonal modality of the words wanted him to continue.
One (N10) points to the fact that dialogue is the key to dealing with this type of situation: I often think
that we nurses mean it in one way, and the doctors, in another way . . . It is a difficult situation, and you need
experience to handle it . . . We must talk with each other. This nurse usually used the personal pronoun we
when referring to nurses. However, she changed to use the personal pronoun we when referring to the
entire healthcare team and she used the word communication when she talked about dealing with the difficult end-of-life decision.

Discussion
Three discursive practices are found: (1) the nurses power and control; (2) sharing power with the patient;
and (3) transferring power to the next of kin. The predominant discursive practice, the nurses power and

Aasen et al.

427

control represents a social practice in which nurses know what is best for patients. This is a paternalistic
discourse that has traditionally been the ideology of the healthcare system.4,5 The second discursive practice, sharing power with the patient, seems to be a hegemonic social struggle29,31 to establish a new social
practice in dialysis units. This is a participation discourse in which patients and nurses engage in dialogue
and share power and decisions.6,7 The third discursive practice concerns the role of the clinic team and the
next of kin in the end-of-life decision-making process.
The nurses used both the patients ages and the seriousness of the patients illnesses as arguments for not
letting them participate in making decisions about their treatment. Changing the social practice from paternalism to participation, and allowing older patients undergoing hemodialysis to participate in decisions
regarding their care and treatment, might present some challenges. It is well known that the context, the
illness and personal characteristics could be hindrances to participation.7,10,12 Other hindrances to patient
participation might include the frailty of the patients and the complexity of their medical problems.1517 The
dialysis units have also been described as dehumanizing places to stay.19,20 In the present study, one nurse
described the dialysis unit where she worked as a factory, some days.

Paternalism versus participation

The nurses used a biomedical explanation to justify the paternalistic attitude and to argue for the nurses
power and control. They used their professional knowledge and endeavored to keep their patients bodies
in physiological balance; in doing so, they believed that they were providing their patients with a better
quality of life. Most of the nurses spoke in a style as though they knew what was best for their patients, and
let their patients have little influence over the treatment. These nurses used their knowledge, an objective
rationale33 and the ethical principle of beneficence.5 However, research has revealed that the complex needs
of older patients undergoing hemodialysis are often not met.21 It is interesting to note that the nurses who
discussed the issue of control also talked about the passivity of patients. The ideology of paternalism has
been described by patients as a barrier to patient participation.11
The second discursive practice, sharing power with the patients, is a practice of participation,68 a social
practice involving active patients in which nurse and patients engage in dialogue and shared decisionmaking. Some nurses trusted the patients and thought that they knew their own bodies and what was best
for them. Moral problems such as non-compliance and patients wishes versus caregivers professional
expertise27 were not present in those nurses stories. The nurses who talked about the social practice of
patient participation used relational narratives. They helped their patients to describe their perceptions of
the illness and to engage in shared decision-making. In that way, they shifted from using principle ethics
to relational ethics. By contrast, an earlier study showed that nurses used an accepted way of thinking when
they encountered moral problems.28 Traditionally, the accepted way of thinking has been paternalistic.4,33

The difficult end-of-life decision

The law regulates the rights of patients and their next of kin and the responsibility of members of the healthcare team.1,3 If the next of kin shall participate in decision-making, the patients have to give them permission to do so.1 In terms of end-of-life decision-making, it seems as though the next of kin have greater
autonomy than the patients. Nurses in this study seem more focused on collaborating with the physician
than on interacting with the competent patients. However, according to the law,3 nurses have an independent responsibility to ensure that patients are in a position to make an autonomous decision.
Research has indicated that, from the time when renal failure is diagnosed,23 patient participation is
important in terms of end-of-life decisions. Patients who are actively involved seem more willing to make
their own end-of-life decisions.24 In the present study, the predominant social practice seems to be

428

Nursing Ethics 19(3)

paternalistic; however, the social practice of the end-of-life decisions seems to involve the principle of
autonomy more for the next of kin than the patient.
According to previous research, stopping or continuing dialysis has been described by healthcare team
members as a moral problem27 that is characterized by uncertainty and a lack of communication and collaboration.25 Our findings suggest that healthcare team members avoid becoming involved in end-of-life
decision-making as long as possible. However, one nurse in the present study mentioned that she used to
help the patients to construct stories about what will happen if they stop dialysis. Ethical narratives might
be one way of constructing the good they seek.33 This is a social constructivist way of thinking, in which
the nurses and the patients used the language to construct their knowledge.32

Limitations
This study adopted a constructive approach. The stories will never be a correct representation of the real
world, but were constructed by the nurses in dialogue with the researcher. The stories represent the nurses
views at the time of the interview. However, rich stories give many data, and noticing how the nurses used
their language gives information about the practice that other methods do not. The interviewers preunderstanding as an earlier dialysis nurse might be a weakness that might influence the stories, but could
also be a strength. The saturation of the data was difficult to ascertain; after 10 informants, the nurses had
described the activities in many ways. However, the analysis shows that the nurses with the same style of the
discursive practices came from the same unit. Perhaps other dialysis units might have revealed another style
if they could tell their stories. The present study cannot, however, be generalized to other dialysis units.

Conclusions and implications for nursing practice

The predominant discourse in the dialysis units in connection to older patients undergoing hemodialysis
treatment and their next of kin seemed to have an ideology of paternalism. The nurses generally used a biomedical explanation and the ethical principle of beneficence to justify their actions. However, the perceptions of some of the nurses suggest that establishing the social practice of participation might be possible.
These nurses show support for engaging in dialogue and shared decision-making and for using ethical narratives as a way of allowing older patients undergoing hemodialysis to participate in their treatment. The
present study also finds that the social practice of the end-of-life decision-making seems to involve the principle of autonomy more for the next of kin than the patients.
These findings are important and relevant for clinical practice when the intention is to let the patients and
their next of kin have their rights to participate in hemodialysis treatment. To change the social practice in
the dialysis units from paternalism to participation, the nurses need to discuss amongst themselves their
beliefs and attitudes connected to allowing the older patients and their next of kin to participate in the care
and treatment. Establishing good dialogue among members of the clinical team might be beneficial in dealing with the difficult end-of-life decision-making process. However, this topic needs further research.
Acknowledgements
We are grateful to the nurses who participated in this study and openly shared their perceptions from the
dialysis units.
Author contributions
The study is designed by all authors. The data collection, analysis and interpretation were accomplished by
Elin Aasen and supervised by Kare Heggen and Marit Kvangarsnes. The drafting of the manuscript was
done by all authors.

Aasen et al.

429

Funding
We would like to thank Aalesund University College and Volda University College for their support.
Ethical approval
Permission to carry out the research was granted by the Regional Committee for Medical and Health
Research Ethics of Mid-Norway, reference number 4.2007.1947, and by the hospitals. Data collection
followed the guidelines of the Data Inspectorate of Norway.
Conflict of interest
The authors declare that they do not have any conflicts of interest.
References
1. Pasientrettighetsloven [Law on patients rights]. Oslo: Ministry of Health and Social Affairs. http://www.lovdata.
no/all/hl-19990702-063.html#3- (2001, accessed 01 February 2011).
2. Stortingsmelding Nr. 25 Mestring, muligheter og mening [White paper no. 25. Coping, possibility and meaning].
Oslo: Ministry of Health and Social Affairs. http://www.regjeringen.no/nb/dep/hod/dok/regpubl/stmeld/20052006/
stmeld-nr-25-2005-2006-.html (2005, accesssed 01 February 2011).
3. Helsepersonelloven [Health care personal act] (2001). Oslo: Ministry of Health and Social Affairs. http://www.
lovdata.no/all/hl-19990702-064.html#4 (2001, accessed 01 February 2011).
4. Collins S, Britten N, Ruusuvuori J and Thompson A (eds). Patient participation in health care consultations. Qualitative perspectives. New York: Open University Press, 2007.
5. Beauchamp T and Childress JF. Principles of biomedical ethics, 6th ed. New York: Oxford University Press, 2009.
6. Sahlsten MJ, Larsson IE, Sjostrom B and Plos KA. An analysis of the concept of patient participation. Nurs Forum
2008; 43: 211.
7. Thompson AGH. The meaning of patient involvement and participation in healthcare consultations: A taxonomy.
Soc Sci Med 2007; 64: 12971310.
8. Hook ML. Partnering with patients a concept ready for action. J Adv Nurs 2006; 56: 133143.
9. Larsson IE, Sahlsten MJ, Sjostrom B, Lindencrona CS and Plos KA. Patient participation in nursing care from a
patient perspective: a Grounded Theory study. Scand J Caring Sci 2007; 21: 313320.
10. Tutton EM. Patient participation on a ward for frail older people. J Adv Nurs 2005; 50: 143152.
11. Larsson IE, Sahlsten MJ, Segesten K and Plos KA (2011). Patients perceptions of barriers for participation in nursing care. Scand J Caring Sci. DOI: 10.1111/j.1471-6712.2010.00866.x
12. Sahlsten MJ, Larsson IE, Plos KA, et al. (2005). Hindrance for patient participation in nursing care. Scand J Caring
Sci 19(3): 223229.
13. Sahlsten M, Larsson IE, Sjostrom B and Plos KA. Nurses strategies for optimising patient participation in nursing
care. Scand J Caring Sci 2009; 23: 490497.
14. Sahlsten MJ, Larsson IE, Sjostrom B, Lindencrona CS and Plos KA. Patient participation in nursing care: towards a
concept clarification from a nurse perspective. J Clin Nurs 2007; 16: 630637.
15. Logan SM, Pelletier-Hibbert M and Hodgins M. Stressors and coping of in-hospital haemodialysis patients aged 65
years and over. J Adv Nurs 2006; 56: 382391.
16. McCann K and Boore JR. Fatigue in persons with renal failure who require maintenance haemodialysis. J Adv Nurs
2000; 32: 11321142.
17. Brown WW. Hemodialysis in elderly patients. Int Urol Nephrol 2000; 32: 127135.
18. Kimmel PL. Depression in patients with chronic renal disease: what we know and what we need to know. J Psychosom Res 2002; 53: 951956.
19. Bevan MT. Dialysis as deus ex machina: a critical analysis of haemodialysis. J Adv Nurs 2000; 31: 437443.

430

Nursing Ethics 19(3)

20. Bevan MT. Nursing in the dialysis unit: technological enframing and declining art, or an imperative for caring.
J Adv Nurs 1998; 27: 730736.
, Nortvedt P, et al. Priority dilemmas in dialysis: the impact of old age. J Med Ethics 2008;
21. Halvorsen K, Sletteb A
34: 585589.
22. Murray MA, Brunier G, Chung JO, et al. A systematic review of factors influencing decision-making in adults
living with chronic kidney disease. Patient Educ Couns 2009; 76: 149158.
23. Noble H, Kelly D, Rawling-Anderson K and Meyer J. A concept analysis of renal supportive care: the changing
world of nephrology. J Adv Nurs 2007; 59: 644653.
24. Baharoon SA, Al-Jahdali HH and Al-Sayyari AA, et al. Factors associated with decision-making about
end-of-life care by hemodialysis patients. Saudi J Kidney Dis Transpl 2010; 21: 447453.
25. Silen M, Svantesson M and Ahlstrm G. Nurses conceptions of decision making concerning life-sustaining treatment. Nurs Ethics 2008; 15: 160173.
26. Murtagh FE, Marsh JE, Donohoe P, et al. (2007). Dialysis or not? A comparative survival study of patients over 75
years with chronic kidney disease stage 5. Nephrol Dial Transplant 22(7): 19551962.
27. Hermsen M and van der Donk M. Nurses morals problems in dialysis. Nurs Ethics 2009; 16: 160173.
28. Dierckx de Casterle` B, Izumi S, Godfrey N and Denhaerynck K. Nurses responses to ethical dilemmas in nursing
practice: meta-analysis. J Adv Nurs 2008; 63: 540549.
29. Fairclough N. Discourse and social change. Cambridge: Polity, 1992.
30. Fairclough N (ed). Analysing discourse: textual analysis for social research. New York: Routledge Taylor & Francis Group, 2003.
31. Fairclough N. Language and power, 2nd ed. Edinburgh: Longman Group, 2001.
32. Schwandt T (ed). Three epistemological stances for qualitative inquiry: interpretivism, hermeneutics, and
social constuctonism. In: Denzin N and Lincoln Y (eds). Handbook of quality research. Thousand Oaks: Sage
Publications, Inc., 2000: 189215.
33. Gadow S. In: Reed PG, Shearer NC and Nicoll LH (eds). Relational narrative: The postmodern turn in Nursing
Ethics. Perspectives on nursing theory. London: Lippincott Williams & Wilkins, 2004: 375385.
34. Polkinghorne DE. Narrative knowing and the human sciences. Albany, NY: State University of New York Press,
1988.
35. Mishler EG. The analysis of interview-narratives. In: Sarbin TR (ed). Narrative psychology: the storied nature of
human conduct. New York: Praeger, 1986: 66117.
36. Fontana A and Frey JH (eds). The interview from structured questions to negotiated text. In: Denzin N and Lincoln Y
(eds), Handbook of qualitative research. Thousand Oaks: Sage Publications, Inc., 2000: 645673.