Research

Community nurses experiences of ethical dilemmas in palliative care: a Swedish study

Margareta Karlsson, Asa Roxberg, Antnio Barbosa da Silva, Ingela Berggren
(Randall and Downie, 1999; Koslander and Arvidsson, 2005, 2007; Palan Lopez, 2007). Erlen (2005) states that community nurses have the ability to identify ethical dilemmas, to create a relationship with their patients, and to act as their advocates in order to help and support them to make an autonomous decision. An ethical dilemma can be dened as a situation where a person experiences a conict where he or she is obliged to perform two or more duties, but realizes that whichever action he or she chooses will be an ethically wrong one (Barbosa da Silva, 2002: 154). Various ethical dilemmas experienced by community nurses have been reported, e.g. when nurses witness medically futile care (Ferrell, 2006), high-risk parenting (Duncan, 1992), experience of caring for a dying family member at home (Proot et al, 2003), and sexuality in palliative care (Woodhouse and Baldwin, 2008). Palliative care requires problem solving and ethical decision-making, where nurses are involved, as moral agents, in personal and interpersonal actions. Nurses in palliative home care make ethical decisions (Berggren, 2005). Health professionals come close to the patient in difcult situations when they are allowed to touch and be touched both physically and spiritually. Acting in such situations requires the ability to be present for the patient, and to distance oneself from the situation (Blomberg and SahlbergBlom, 2007). Wallerstedt and Andershed (2007) reported that nurses wanted to provide high quality care for patients at the end of life. However, they experienced lack of cooperation, support and time. This nding is in line with Hopkinson et al (2003), Tishelman et al (2004), Wilkes (1998) and Wallerstedt and Andershed (2007), who all stated that nurses have a multifaceted and complex role and function in the care of a dying person. In palliative care, the community nurse is the professional to whom the patient and next of kin turn when they have questions or want to discuss care and treatment options at a critical

Abstract
Aim: The aim of this study was to highlight community nurses experiences of ethical dilemmas in palliative care. Background: There are many studies on palliative care but research on how community nurses experience ethical dilemmas in palliative home care is lacking. The ethical dilemmas to which these nurses are exposed seriously challenge their ethical competence. Method: Seven community nurses described their experiences of ethical dilemmas in palliative home care. The data was analysed by means of qualitative content analysis. Findings: The core themes that emerged were: powerlessness, frustration, and concern in relation to ethical dilemmas in palliative care. The nurses were motivated and felt responsibility for their patients end of life, and their relatives, and took their duties seriously. They wanted to satisfy all parties; the patient, the relatives and other palliative care professionals. Conclusion: The study conrms the need for knowledge about how community nurses experience dilemmas in ethical decision-making. They have the freedom to act and the willingness to make decisions, but they lack competence and knowledge about how their colleagues experience and deal with such issues. Keywords: Concern Frustration Powerlessness Nursing Content analysis
ommunity nurses have a central role in caring for dying people in their homes, and create conditions that improve patients quality of life. They are close to the dying person and his or her next of kin, and cooperate with other professionals to achieve the best for the patient. Community nurses work in complex situations, whereby they have much involvement with the family, are dependent on other professionals, and do not have much time for reection. This situation can present community nurses, who are working as guests in their patients homes, with many forms of ethical dileamma. Vachon (1998) asserts that nurses personal lifestyles also affect how they cope with stressors in palliative care. This study will attempt to illustrate how community nurses experience ethical dilemmas in palliative care.

Margareta Karlsson is a Lecturer at the Department of Nursing, Health and Culture, University West, Trollhttan, Sweden; sa Roxberg is Senior Lecturer, School of Health Sciences and Social Work, Vxj University, Vxjo, Sweden, and Associate professor at the University College of Haraldsplass, Bergen, Norway; Antnio Barbosa da Silva is Professor of Mental Healthcare, Professor of Systematic Theology and Professor of Ethics and Philosophy of Sciences, College and Tehological Seminary, Kristiansand, Norway, and Ingela Berggren is Senior Lecturer at the Department of Nursing, Health and Culture, University West,

Background
Nurses manage a patients suffering from a physical, psychosocial and spiritual perspective

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time in the patients life when personal assistance is required (Erlen, 2005). Palliative care can involve the whole family, which can make the nurses work difficult (Ahlner-Elmqvist, 2001; Berggren, 2005) owing to, among other things, being faced with ethical dilemmas as a result of the close relationship with the parties involved (Huycke and All, 2000; Rajput and Bekes, 2002; Gallagher et al, 2002). According to Breier-Mackey (2001), caregivers must respect the patients autonomy. However, nurses in palliative care strive to help patients experience a comfortable death but lack time for ethical reection. It may cause unease if there are concealed, or open, conicts between the next of kin and nurses about how to best care for the patient (Dahlin, 2004). Blasszaur and Pal (2005) state that nurses in palliative care lack autonomy, because the physician is the sole decision-maker. Therefore many nurses feel powerless and frustrated because of their inability to solve ethical problems (strm et al, 1995; Leners and Beardslee, 1997; Vachon, 1998; Georges and Grypdonk, 2002). However, Ofstad (1961) explains how ethical decisions are made on a continuum that varies between low- and high-integrated decisions. Low-integrated decisions do not require special consideration and are not based on the values and intrinsic properties of the decision-makers personality. High-integrated decisions, on the contrary, are based on individual ethical value systems and intrinsic properties of ones personality (Ofstad, 1961). A description of Ofstads theory is presented in Figure 1. If nurses had more training on ethics and ethical problems, it would be easier for them to raise various issues and be more tolerant to different values, which can provide valuable information about the others strengths and weaknesses in decision-making related to ethical dilemmas. This, in turn, could improve cooperation in palliative care decision-making (BreierMackey, 2001). Although there are a number of studies looking at palliative care, there is lack of research on how community nurses experience ethical dilemmas in palliative home care. The ethical dilemmas to which these nurses are exposed seriously challenge their ethical competence. The dying patient is vulnerableas are the next of kin who are about to lose a loved one. Nurses have to collaborate with other professionals in palliative care. In order to positively face this challenge it is necessary for community nurses to be aware of what it means to be in an ethical dilemma and to collaborate with other health professionals.

The study
Aim
The aim of the study was to illuminate community nurses experiences of ethical dilemmas in palliative care. The research question was: How do community nurses describe their experiences of ethical dilemmas in relation to patients, relatives and other professionals when caring for dying persons?

Methodology
A qualitative content analysis was used to describe and analyse the collected data. Berg (1995) stated that content analysis can be helpful in many types of exploratory or descriptive studies. According to Polit and Beck (2008) qualitative content analysis aims to identify themes and patterns. It involves breaking down data into smaller units, coding and identication, and taking into account the content they represent. In this study the researchers coded the openended text from the narratives independently in order to ensure validity. The ndings from the coding and the classication scheme were then compared and discussed by the researchers and agreed upon.

Participants
The study comprised seven nurses in municipal care, all women, with experience of nursing and palliative care (range 415 years). They were taking part in an optional course on the subject of palliative care at a Swedish University. During

Figure 1. The interaction between a decision and the decision-makers beliefs, desires, norms, and values. Any factor in the gure may interact with any other
Beliefs The use of attention

Desires

Decision Effort to decide Environment

Norm system

Value system

Modied from: Ofstad, 1961: 157

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the course they studied and discussed ethical dilemmas. The inclusion criteria were: employed as a community nurse, and experience of palliative care.

Ethical considerations
The head of department at the university approved the study, and the Helsinki guidelines were followed (World Medical Association, 2008). Nurses who attended a course on the subject of palliative care were asked to participate in the study. Those who agreed gave their informed consent. They were informed that participation was voluntary, that condentiality was guaranteed and that they were free to withdraw from the study at any time without any negative consequences for them. The rst author was a teacher on the course, and the other three authors had no connection with the participants. The fourth author informed the participants orally about the study and distributed a letter of invitation.

each participant contributed about two pages. No definition of the concept of ethical dilemma was provided but Barbosa da Silvas description, above, was used to explain what is meant by an ethical dilemma (Barbosa da Silva, 2002: 154). The nurses therefore had to decide for themselves what they perceived to be, and experienced as, a dilemma. The participants submitted their narratives anonymously by placing them in the fourth authors university post box after completion of the course, when they were no longer dependent on the authors.

Data analysis
Three core themes emerged from the analysis of the narratives: powerlessness, frustration, and concern. In this study the analysis refers to the search for main themes and sub-themes in the qualitative material. Some of the situations the participants wrote down were similar in terms of their experiences of ethical dilemmas in relation to patients, relatives and other professionals when caring for dying persons. The descriptions of the situations are presented in Figure 2. The narratives were read to get an understanding of the nurses experiences of ethical dilemmas in palliative care, and their ethical decision-making in such situations. The text was then divided into meaning units in accordance with the aim of the study. Each meaning unit was condensed and abstracted, after which they were related to each other and divided into subthemes and themes. While the main themes and sub-themes that emerged were logically interrelated, they could be seen as separate. These themes mirror the differences in nurses experiences of ethical dilemmas in palliative care. An example of analysis of community nurses experiences of ethical dilemmas in palliative care is presented in Table 1.

Data collection
Of the 16 nurses who attended the course, seven agreed to participate in the study and gave their informed consent. The fourth author contacted them and asked them to write down one specic ethical dilemma they had experienced when caring for dying patients in the community. The second question concerned how they managed it. The third question was whether or not they experienced support in their practice, and if so, what kind of support they received and from whom. It was assumed that it might be easier to write an account of an ethical dilemma than to tell it to anyone. All the narratives were handwritten and

Figure 2. A summary of the situations the participants experienced as ethical dilemmas

Relatives want the patient admitted to hospital against patients and nurses wishes

Rigour
The study has a thread going from the aim, through to the theoretical conceptual framework and the methodology, to the interpretation. The validity of this study was ensured by the researchers independently coding and comparing the themes (Baxter, 1991). Through this internal validity process, the researcher discussed and developed a description of the ethical approach to illuminate community nurses experiences of ethical dilemmas in palliative care.

The patient refuses necessary care

Being obliged to continue Summary of the nurses treatment when the patient is experiences too ill of ethical dilemmas

Knowing that the patient needs more pain relief and the physician and colleagues do not agree

Findings
Table 2 presents an overview of the main themes and sub-themes formulated on the basis of the

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analysis of the community nurses experiences of ethical dilemmas. The main themes that emerged from the narratives during the analysis were: powerlessness, frustration, and concern.

Table 1. An example of the structural analysis of community nurses description of ethical dilemmas in palliative care
Meaning unit When I offered to help him he quickly rejected my offer out of hand Condensation My attempts were rejected Sub-theme Disappointment Main theme Frustration

Powerlessness
The community nurses experienced powerlessness when caring for dying patients owing to demands from relatives. They felt powerless when obliged to continue treatment and tests, and were dependent on the physician with regard to the patients pain relief.

We received instructions from the hospital that we need not follow standard check-ups, as the welfare of the patient was paramount. But the physician felt uncertain and was fully convinced that weight, blood pressure and uid records were to be adhered to. (Nurse 2)

Being subjected to demands

Community nurses experienced powerlessness when the patient was dying and could no longer be cared for in the home. In one case, when a husband insisted on his wife being moved to a nursing home and threatened to leave the joint home if this did not happen, the nurse felt exposed to demands, stress and pressure. One of the nurses experienced powerlessness when the wife complied with the husbands wish:
We helped to arrange short-term accommodation for her in the municipality. We told them that we would try it for a couple of days and then she could return home again. The patient died on the ward within a week, she was not entirely happy but accepted it for her husbands sake. (Nurse 1)

When the patient lacked the energy to refuse treatment, nurses felt powerless, since they found it difcult to discuss the situation with others. In view of the hospital policy of focusing on the patients quality of life in the end-of-life phase, nurses experienced a sense of inadequacy owing to lack of support from and their inability to influence the physician. They also felt powerless when they understood that the dying patients quality of life no longer had priority.

Being dependent
The nurses had a feeling of dependency when they wanted to provide adequate pain relief to patients whose pain was insufferable, and it was often difcult to convince the physician to prescribe it. In the following quote, a nurse describes how a patient did not receive the pain relief that she considered necessary.
I felt that the patient did not receive the help he needed. Another nurse helped me to make it clear to the doctor that the pain was not under control. (Nurse 7)

This nurse was also powerless when the patients husband became agitated and demanded that the dying patient should be moved to a hospital instead of receiving home care. She was aware that the transport and change of care environment would probably hasten the patients death. In such cases, the doctors attempts to explain the situation to the relatives were usually unsuccessful. Nurses were frustrated when the dying patients wish to be cared for at home was ignored by the family. The nurses experienced an ethical dilemma when the relative was satis ed, whereas they themselves, and the patient, were not.

This nurse felt powerless and obtained support from colleagues in order to inform the physician about the patients situation. This constituted an ethical dilemma because the nurse had knowledge

Table 2.Themes and sub-themes from the analysis of the narratives (n=7)
Main themes Sub-themes Being subjected to demands Feeling inadequate Being dependent Lack of condence Disappointment Being worried Lack of consensus Powerlessness Frustration Concern

Feeling inadequate
The nurses experienced inadequacy when it was decided to continue tests and treatment in spite of the fact that the patient was too weak to undergo such procedures. They felt stress when they questioned whether such procedures constituted quality care for the dying person. One nurse described how she perceived contradictory messages in palliative care:

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{ Frustration emerged when the nurses felt that the patients relatives lacked condence in them

of pain relief but did not receive support from the physician to give pain relief to the patient.

Frustration
Frustration emerged when the community nurses felt that the patients relatives lacked condence in them. They reported being disappointed when they could not help the dying patient. The nurses were also frustrated when they did not receive support from the physician for their experience of dilemma by the physician.

how much she tried to motivate him to accept her help. The nurse felt that she had violated the patients integrity; at the same time she experienced frustration at not being allowed to satisfy his needs. She was aware that he was in need of care, but his strong sense of integrity prevented him from accepting her help.

Concern
The community nurses became worried when they experienced lack of consensus among colleagues about how to care for the patient. Being worried refers to the nurses concern about the patients pain relief.

Lack of condence
Nurses felt that patients relatives lacked condence in them when they became anxious, and wanted the patient to be cared for in hospital. In such cases, the nurses tried to explain that they could care for the patient at home. Although this was in line with the patients wishes, the relatives exhibited uncertainty, and the nurses became frustrated when they were unable to convince the relatives to accept their proposal, as one of the nurses describes:
The wife insisted that her husband be admitted to hospital, I tried to explain that we could handle his anxiety. She was unsure and close to panic. I explained again. (Nurse 6)

Being worried
Nurses were worried when the patient did not receive adequate pain relief. In one case, when a relative at a critically ill patients bedside stated that the pain relief was insufficient, the colleague did not dare to administer an additional dose. One nurse describes her colleagues lack of knowledge about pain relief in palliative care:
My colleague assessed that he was not in pain. The relative became very agitated. (Nurse 4)

Nurses expressed that in such delicate situations they would do everything in their power to relieve the patients fear. The patients wanted to die in their own home but nurses became uncertain about how to act, as they knew that the relatives did not believe that they could care for the patients at home.

The colleague who did not dare to administer an additional dose came into conict with the patient and next of kin.

Lack of consensus
The effect of lack of consensus within the team on the meaning of palliative care was experienced as an ethical dilemma, which worried the nurses. In one nurses description, a patient had been assured that he would be given the necessary painkillers. The nurse came into conict with her colleagues concerning the patients pain relief. One nurse described how the patients relatives came to her and asked for an additional dose
A colleague refused to administer an additional dose of pain relief medication. The relatives came to me and asked for an additional dose for the patient. (Nurse 4)

Disappointment
The nurses experienced disappointment when they could not help patients whose condition deteriorated rapidly, and also when they had to administer pain relief or change continence pads, and the patient declined the care offered. In one description, a patient pulled the blanket over his head, refused to show himself, and rejected all help. Another nurse described her disappointment at having failed to help:
He was awake when we came and pulled the blanket over his head. I introduced myself and asked how he was. When I offered to help him he quickly rejected my offer out of hand. All my attempts were rejected in the same way. He had a very strong sense of integrity. (Nurse 3)

The nurses colleagues stated that they were worried about her knowledge of pain relief in palliative care and lack of sensitivity towards the dying patients need because she did not administer it.

Discussion
The aim of this study was to illuminate community nurses experiences of ethical dilemmas in palliative care. When the nurses personal values

It was disappointing for the nurse that she was not allowed to help the patient, no matter

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were incompatible with those underlying a decision, they described powerlessness, frustration and concern. The analysis revealed that community nurses focus on high-integrated decisions (Ofstad, 1961). The environment, i.e. the home of the dying person, is a place where the nurse is invited as a guest under special circumstances. This can make things more difcult for the nurse, especially when it comes to ethical decision-making, and can be related to the environment factor according to Ofstads (1961) concept of freedom of decision, which is relevant to nurses decision-making ability. However, nurses are free to search for information about the consequence of a decision in a specic situation and to evaluate its moral rightness (Ofstad, 1961). The description of powerlessness resulted from having to face the demands of, and feeling inadequate, in relation to both the patient and his or her relatives. The nurses dependency on the physician became evident in the area of treatment and symptom relief. Ofstad (1961: 202) argues that while a person may be free to make decisions, the person can be prevented, either physically or mentally, from acting freely. An individual can also be forced to carry out actions that are in conict with his or her own fundamental values or conscience, as was sometimes the case with the nurses in this study (Ofstad, 1961: 202). It is reasonable to say that they described powerlessness when caring for the patient, as they did not have the freedom to make high-integrated decisions. When it came to actions, they perceived limitations that prevented them from acting in a way that was beneficial for the patient. How nurses make high-integrated ethical decisions depends on their fundamental value system, freedom to act and willingness to make decisions. The nurses feelings of powerlessness, frustration and concern in connection with ethical dilemmas in the care of dying people show that they take their duties seriously. According to Ofstad (1961), being moral means taking serious things seriously, which is in accordance with the views of the nurses in the present study. The nurses felt worried when they described lack of consensus in the team about how to care for the dying patient. They described powerlessness when the relative made demands that conicted with their views on how the patient should be cared for. Sometimes the relatives disagreed with each other, therefore making the situation even more complex. To provide good palliative care and be present, nurses need to feel safe in the relation-

ship with the patient and relatives. When the nurses experience security in the patients home and have the necessary time for care, it allows them to be present for that person. It is important for nurses to demonstrate solidarity with the patient and the relatives, as this helps them to experience the situation more positively. The nurses themselves determined what they perceived as an ethical dilemma. The findings demonstrate that the community nurses experienced powerlessness, frustration and concern due to ethical dilemmas in palliative care, which is in line with other studies (strm et al, 1995; Leners and Beardslee, 1997; Vachon, 1998; Georges and Grypdonk, 2002). The study reveals that the nurses experienced being obliged to consider patients and relatives needs and wishes as well as following doctors ordersthis was experienced as a dilemma. The nurses described powerlessness when the relatives made demands that conicted with their views on how the patient should be cared for. Sometimes the relatives disagreed with each other, therefore making the situation even more complex. As nurses are intimately involved in the patients care, they are aware of the complexity of ethical situations when patient and next of kin do not agree (Erlen, 2005). Brnnstrm et al (2007) described the situation of relatives in palliative care at home and found that they were always worried, they struggled to keep daily life as normal as possible and felt condent with the help they received from an advanced home care team. It is important for nurses to record the goal of the care for each patient in palliative care as well as to discuss it with other professionals and caregivers. Dunne et al (2005) found that different opinions about end-of-life care and gaps in communication between nurses and other professionals were a source of stress for community nurses. Nurses describe ethical dilemmas in relation to both the patient and relatives. Ethical dilemmas are followed by ethical decisions, and nurses can acquire the ability to make these decisions with the support of clinical nursing supervision. This type of support allows the nurses to reect on different situations and view them from a broader perspective (Berggren et al, 2002). This can reduce their feeling of powerlessness, frustration and concern, which in turn may increase the nurses courage to remain close to the dying person. Vachon (1998) described stress factors such as grief among nurses who care for dying people. Being constantly confronted by death reminds the nurses of their own mortality. The nurses in this study experienced grief when their patients did not have a

{ How nurses make highintegrated ethical decisions depends on their fundamental value system

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{ Sometimes the relatives disagreed with each other, making the situation even more complex

good death. The opportunity for reection can reduce the stress factors involved in caring for people who are seriously ill. Reection and discussion together with other palliative care professionals provide strategies for how to act in relation to the patient (Sexton-Bradshaw, 1999). Furthermore, Hyrks et al (2002) highlighted the fact that the relationship between different professionals also had an impact on the psychosocial environment. The nurses describe powerlessness, frustration and concern in connection with ethical dilemmas in the care of dying people show that they take their duties seriously. They were motivated and had knowledge of palliative care. According to Ofstad (1961), to be moral means taking serious things seriously, which is in accordance with the views of the nurses in the present study. The nurses felt worried when they experienced a lack of consensus in the team about how to care for the dying patient. Therefore, community nurses need support to reach consensus on what constitutes good palliative care. Ofstads ethical theory can form the basis for nurses actions, in general, as well as the way in which they experience ethical dilemmas in caring.

rich information. However, it is possible that some valuable data have not been captured, which could have been captured if participants were interviewed face-to-face.

Conclusion
The ndings may contribute to knowledge of how community nurses in general experience decision-making when confronted by ethical dilemmas. The study confirms the need for knowledge about how nurses in palliative care experience dilemmas in ethical decision-making. As the result demonstrates, in order for palliative care nurses to have the freedom to act and the willingness to decide, they need ethical competence and knowledge of how their colleagues experience and deal with ethical dilemmas and ethical decision-making. Community nurses in palliative care need support in this demanding and complex area, where an ever increasing number of seriously ill and dying individuals are cared for in their homes. It is also necessary for nurses to discuss fundamental values and ethical dilemmas with other professionals in order to gain a better grasp of each others role, skills, experience and personality. This will facilitate understanding of the powerlessness, frustration and concern that form part of nurses experience of caring for seriously ill and dying patients. This study can contribute to nurses ongoing reections on ethical dilemmas in nursing and increase their ability, will and freedom to act. Ofstads (1961) theory can be useful for community nurses decision-making in palliative care. More knowledge is needed about how nurses dene and deal with ethical JPN dilemmas in palliative care. I

Limitations of the study

Seven community nurses narrated an ethical dilemma that they had experienced when caring for dying patients in their own homes. All participants attending a palliative course (n=16) were invited to take part in this study. It is debatable whether the nurses felt obliged to participate or not. They might not have felt able to decline because they felt dependent on the course instructor, despite the fact that the study took place after the course. The ndings may be applicable to nurses who work in other palliative care settings. Illuminating palliative care nurses perceptions of an ethical dilemma raises awareness of their competence and desire to perform the right actions. Data collection comprised asking the community nurses to describe a story of a situation in which they had experienced an ethical dilemma when caring for a dying person. A limitation of the study is that the participants had no opportunity to respond to questions such as What do you mean?. Other limitations include the fact that the participants had a special interest in palliative care that might have inuenced the ndings in a positive way. The participants may also have had greater ethical decision-making ability compared to nurses from other specialities. Although the data only comprised two pages of text from each nurse, they contained

Contributions
Study design: IB; Data analysis: MK, IB; Manuscript preparation: MK, R, ABS, IB

Acknowledgements
The authors are grateful to the participants in the study and to Gullvi Nilsson and Monique Federsel who revised the English language.

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