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End of life decisions: Nurses perceptions, feelings and experiences
Intensive and Critical Care Nursing (2008) 24, 251—259
ORIGINAL ARTICLE
End of life decisions: Nurses perceptions, feelings and experiences Rachel E. McMillen ∗ Faculty of Health, Sport and Science, Glyntaff Campus, University of Glamorgan, Pontypridd CF37 1DL, United Kingdom Accepted 8 November 2007
KEYWORDS End of life decisions; Withdrawal of treatment; Intensive care; Nurses and decision making
Summary Decisions to withdraw treatment are made on a regular basis in intensive care units. While nurses play a central role in patient care, previous studies have found that they are not always involved in withdrawal decisions. Aim: To explore the experiences of ICU nurses caring for patients who have had their treatment withdrawn and to answer two research questions: what role do nurses play and how does this affect them? Method: Constructivist grounded theory was used to explore the experiences and feelings of ICU nurses. A purposive sample of eight ICU nurses participated and semi-structured interviews were used to collect data. Framework analysis was used to facilitate systematic analysis. Results: The analysis revealed two major themes (1) the nurse’s role: experience counts, not really a nurse’s decision, planting the seed, supporting the family and being a patient advocate and (2) perceptions of the withdrawal of treatment: getting the timing right and emotional labour. Conclusions: Nurses make an important contribution to end of life decisions and care. Guidelines recommend they have input into withdrawal decisions, therefore it is imperative that nurses are supported in this role and their responsibilities to continue to provide care during withdrawal. © 2007 Elsevier Ltd. All rights reserved.
Introduction Withdrawal of treatment is a contentious issue in intensive care because it is now possible to maintain life for long periods without hope of recovery. Decisions to withdraw treatment are made daily ∗
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in intensive care units (ICUs) around the country (Winter and Cohen, 1999). Current guidance is in the form of government documents, professional guidelines and local trust policy. While doctors have British Medical Association guidance (BMA, 2001), a General Medical Council (GMC) statement (GMC, 2006) and the Intensive Care Society guidelines (2004) (Cohen et al., 2004) there is no specific guidance for nurses (Pattison, 2006).
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252 The organisation of care in ICUs puts nurses in a unique position to contribute to decision making processes, for example high nurse/patient ratios, providing care daily and forming close relationships with the patient and/or family. This provides the opportunity to discuss the wishes of the individual regarding treatment, death and dying (Watson, 1993). However, despite these factors nurses are not always asked to contribute to end of life decisions (Viney, 1996). More recent work has shown that the whole team can be involved (Mercer et al., 1998; Pattison, 2006; Woolridge and Burrows, 1999) but this may differ between units. While legal responsibility rests with the consultant in charge, BMA guidelines recognise team working and particularly the role of nurses as important when it comes to making decisions about treatment withdrawal as all health professionals involved with caring for the patient have an important contribution to make in the assessment (BMA, 2001). Nurses are recognised to have particular insight into patients’ wishes as they spend most of their time with the patient and often have considerable contact with the relatives (BMA, 2001). There is evidence to show the burden end of life decisions place on doctors and nurses working in intensive care units (Oberle and Hughes, 2001). Several studies have examined the effects these end of life decisions have on nursing staff (Halcomb et al., 2004; Hov et al., 2007; Johnson, 2002; Schneider, 1997). Following a review of the literature it was found that when nurses do not contribute to these decisions it can cause feelings of anger, frustration and powerlessness (Erlen and Frost, 1991; Watson, 1993; Yang and Mcilfatrick, 2001). As nurses will often implement the decision to withdraw or withhold treatment it can be a cause of moral distress and difficulty especially if there is disagreement. Other stressful factors included situations where there were delays in decision making resulting in unnecessary suffering for the patient and family (Halcomb et al., 2004; Hov et al., 2007; Oberle and Hughes, 2001; Schneider, 1997). Anxieties occurred due to ethical unease about the mode of treatment withdrawal and the proximity of actions to euthanasia (Schneider and Young, 1998). This was particularly a concern of more junior nurses (Yang and Mcilfatrick, 2001). A number of positive aspects of these situations were identified. Nurses felt satisfied when they could be there for the family, when patient suffering was relieved and they were allowed a peaceful, dignified death. Good decisions were considered to be timely, collaborative and include patient and family views (Johnson, 2002; Jones and Fitzgerald, 1998).
R.E. McMillen In light of the lack of published guidance for nurses and the variation in nurses’ involvement in decision making it was felt that there was room for further exploration of the role of the nurse in end of life decision making and the effects this has upon them. The specific research questions chosen were: What role do nurses play in end of life decisions in the ICU in which I worked? How does their involvement affect them?
Method In order to explore these issues more deeply a qualitative research method was used. The research design chosen was a constructivist grounded theory (Charmaz, 2000). Constructivism is a theoretical approach to social science which is based on the assumption that people create their own social world. It acknowledges that there are multiple realities and recognises the mutual creation of knowledge by the researcher and participant. A constructivist approach necessitates a relationship with participants in which they can tell their stories in their terms, and it involves listening with openness to feeling and experience (Charmaz, 2000). Grounded theory is an approach to data collection and analysis initially developed by Glaser and Strauss in the 1960s. The aim of grounded theory research is to develop theory from the data collected by the researcher (Holloway, 1997). A constructivist approach to grounded theory requires adopting a position of mutuality between the researcher and participant in the research process which requires a rethinking of the grounded theorist’s traditional role of objective observer (Mills et al., 2006). This approach was chosen because as the researcher I worked with the participants on a regular basis and had experience of the issues being discussed so it would be difficult to assume the role of an objective outsider.
Participants and setting Purposive sampling was used for this study which is common in qualitative research. In purposive sampling generalisability is less important than collection of ‘rich’ data and an understanding of the ideas of the participants (Holloway, 1997). The sample comprised eight qualified nurses from one ICU in the north of England. There were three senior nurses (grades F/G) with up to 20 years experience and five E grade staff nurses with 6 months to 7 years experience. The researcher was working as
End of life decisions: Nurses perceptions, feelings and experiences an E grade staff nurse on the 6 bedded unit at the time of the study.
Ethical considerations Approval was obtained from the Local Research Ethics Committee and the clinical nurse manager for the unit prior to undertaking the study and approaching participants. Before each interview participants gave formal written consent. Due to the sensitive nature of the subject matter it was made clear that those who chose to take part in the study were able to withdraw at any time. Confidentiality was maintained by omitting names on the transcript or tape so that participants could not be identified. The interviews were labelled by number.
Data collection Data were collected using a semi-structured interview guide. Interviewing is a favoured method of data collection in qualitative research as it produces ‘rich data’ (Holloway, 1997). While collecting all the important information about the research topic participants can still be given the opportunity to describe their own thoughts and feelings. This method of data collection is useful because prior knowledge can be used to allow the interviewer to focus on issues of particular importance to the research question and clarify comments by the participants. The researcher’s background allowed insight into the participants’ experiences during the interviews in line with the constructivist approach to create a true dialogue and dismantle power imbalances. The interviews took place during the summer of 2002 and were arranged at a convenient time and place for the participants. They were conducted in the participants’ own time and lasted from 40 min to 1 h. All interviews were audio-taped and a consent form was signed with the assurance that confidentiality would be maintained and the interviews could be stopped at any point if the participant requested.
Data analysis Following each interview the tape recordings were transcribed verbatim by the researcher. Data collected through qualitative research is invariably unstructured and often text based. The qualitative researcher has to provide some structure and coherence to the large amount of data while retaining a hold of the original accounts and observations from which it is derived (Holloway, 1997). To facil-
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itate this framework analysis designed by Richie and Spencer (1994) was used. This method shares common features with thematic analysis. Framework analysis is designed to facilitate systematic analysis of the data. It is an inductive approach and uses the constant comparative method which is a key feature of grounded theory. This approach was chosen because it is systematic, easy to follow and consistent with a constructivist perspective. Five key stages to the process are identified: familiarisation, identifying a thematic framework, indexing, charting and mapping and interpretation (Richie and Spencer, 1994). It is possible either for all the data to be collected before analysis occurs or equally for data collection and analysis to occur concurrently (Lacey and Luff, 2001). The constant comparative approach was used so that in line with the constructivist nature of the inquiry some of the findings from earlier interviews could be fed into subsequent interviews by a process known as the hermeneutic cycle (Rodwell, 1998). Familiarisation with the data occurred by transcribing and reading the data thoroughly and repeatedly. During this process key themes emerging were identified and highlighted. This process of identifying a thematic framework is developed and refined during subsequent stages (Lacey and Luff, 2001). The process of indexing is similar to coding in other types of qualitative data analysis. Data were indexed by applying textual codes to specific pieces of data, grouping the themes together and then charting them using the headings from the thematic framework. Charting can be done by case or theme (Lacey and Luff, 2001). In this study case charts were created with quotes from each respondent across all themes. The final stage is where patterns, associations, concepts and theory are sought from the data. This is often generated when sampling has reached ‘theoretical saturation’ of the data where no new data were emerging and when the theory fully explains the variation in the data (Strauss and Corbin, 1990). Theoretical saturation did not occur in the study due to the small number of participants interviewed which was partly determined by limited resources. However, this does not mean that the findings cannot contribute to knowledge and practice (Parahoo, 2006). The results from this study could act as a pilot for a more robust future study.
Findings The themes from the data address the two research questions which were identified. They are presented under two main headings: the nurse’s role
254 and perceptions about the withdrawal of treatment.
The nurse’s role The following themes relate to the significant aspects of the nurse’s role in end of life decision making in ICU.
Experience counts Experience was a major factor in the differing responses to the questions asked at the interviews. One aspect of this was that senior nurses were recognised by the consultants and they seemed to listen to them: ‘‘It depends if they recognise you. The longer you’ve been there the more they value your opinion.’’ (Nurse 6) ‘‘I think I have a bigger say because people recognise that I am a senior nurse and recognise that I have had experience.’’ (Nurse 8) This is perhaps unsurprising as the senior nurses had more experience of dealing with end of life decisions and the consultants are likely to recognise this. Length of experience within ICU is evidently a factor in how much consideration is given to nurses’ views. More experienced nurses indicated the great caution with which they approached such decisions. This was influenced by their experience of looking after patients who had had their treatment withdrawn and then subsequently got better. Although rare, these situations had obviously affected their views. They alluded to the fact that junior staff had probably not seen this happen and therefore did not have the benefit of experience. Furthermore, it was more difficult for junior nurses to express their views. The junior nurses made reference to their lack of confidence and the expectation that they may not be listened to as they were not recognised as possessing enough experience.
R.E. McMillen
Not really a nurses’ decision All of the participants felt that the decision to withdraw treatment was not theirs. Rather it was the decision of the consultant anaesthetist. When asked if they played any part in the actual decision one participant replied: ‘‘No, and I don’t think I’d ever want to either because at the end of the day it’s somebody’s father, brother, mother whatever. No amount of money in the world could ever get me to make that decision I don’t think and I don’t know how they (the consultants) sleep at night sometimes.’’ (Nurse 3) However, there was some feeling that nurses should have a degree of input and be able to express an opinion as they spend most time with the patient and family and they pass on required information to the medical staff. Primary nursing and nurse led ward rounds were both mentioned as positive measures for nurses to get more involved in patient care and decision making. One of the senior nurses spoke of supporting the doctor in decision making, a theme which none of the other participants mentioned. This was achieved by giving different perspectives and making sure it was sound by questioning the rationale. ‘‘I think I have a role in supporting the physician who makes the decision because I think it’s unfair to leave someone lonely in that decision and I think it helps them rationalise. I think also to contribute in a way where the medic might not have thought of everything and to shed light on the compassion side.’’ (Nurse 8) Clearly although nurses do not actually make the decision to withdraw treatment, they can have an invaluable role in providing both clinical information and views of the family and they can have a significant input into the decision making process.
Planting the seed
‘‘I don’t say anything because presently nobody’s going to take me seriously because I’ve not been there long enough.’’ (Nurse 1)
This refers to the process of the nurse starting to hint to the medical staff that maybe it is time to think about withdrawing treatment. The consensus in the interviews was that nurses seem to think that it is appropriate to withdraw treatment on a patient before the medical staff, as one participant reflects:
Consultants were viewed as powerful people who by nature of their position have lots of experience and junior nurses were almost fearful to speak up around them.
‘‘It’s generally the nurses that want to withdraw first before the doctors but that’s possibly because the nurses are there all the time with the patient and the relatives and the doctors aren’t, they just
End of life decisions: Nurses perceptions, feelings and experiences tend to come and look at the numbers at the end of the bed and some doctors are like that, others aren’t it depends.’’ (Nurse 5) As nurses spend most of their time at the bedside and with the relatives, they tend to be more aware of when a patient is not responding to treatment. This concept of planting the seed seems to be a subtle way for nurses to suggest a particular course of action. ‘‘We have a little bit of say on the ward rounds, if you paint a bleak picture the consultant can either listen to you or totally ignore you and look at the facts and figures for himself, and I think a little bit of experience counts here with the nurses because the consultants seem to listen a bit more to experienced nurses, and you know if you paint quite a bleak picture they will sit back and listen to you and you know the bleaker the picture the more they think, you know its probably just at the back of your mind, but you know you’ve planted the seed and they can do with it what they want really. They can either let it mature and go for the withdrawal process after they’ve spoken to the family or continue for another 24—48 h.’’ (Nurse 3)
Supporting the family All of the participants talked about their role in supporting the patient’s family during the time a withdrawal decision is being made. As nurses spend most time with the patient’s family they are the ones who provide support at this difficult time. Participants talked about their responsibility to find out the family’s views and to do the groundwork preparing them for bad news.
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Being a patient advocate Two participants spoke about their role as patient advocate and they were both very experienced nurses. It is evident that it is not a straightforward role when working with incompetent adults. ‘‘The only way to get a proper picture (of the patient) is by talking to the people who know them best, and then it puts you in a better position to be their advocate. I do think the role of being a nurse and being a patient advocate don’t interknit very well because I think you’ve still got your preconceived ideas, and your development as a person still affects how you look at somebody else and you can’t even in a fortnight with somebody who is unable to communicate with you, you’ve still got someone else’s interpretation of them which is what you’re going on.’’ (Nurse 4) One further aspect of the nurse’s role as patient advocate mentioned is the duty to protect the patient’s safety and legal position and to ensure the decision is a sound one. The themes presented here have shown how nurses are involved in decision making and what they perceive their role to be in the withdrawal of treatment from patients in ICU. The second heading relates to how nurses feel about the withdrawal process and how these decisions affect them.
Perceptions of the withdrawal of treatment These themes encompass many smaller themes which refer to the many personal feelings and experiences of participants about treatment withdrawal.
Getting the timing right ‘‘I always try to bring the relatives with us so that if their relative is deteriorating and is not going to get any better when the doctor does come round and speak to them the groundwork has been done, they are prepared for bad news.’’ (Nurse 3) Another participant saw their role as including seeing to the family’s practical needs. ‘‘Supporting the family, I think basically that’s what you have to do, the whole build up to it and the actual doing it if you like and getting the family there and the whole practical side as well, because there’s a huge practical side you know, where they can stay if they want to stay, there’s the car parking even, things like making sure they eat.’’ (Nurse 7)
The concept of timing emerged as an important factor in withdrawal of treatment decisions. Getting the timing right is important not only for the patient and relatives but also the staff. ‘‘We withdrew not soon enough, it was shocking. . .I just thought why couldn’t it have been done sooner because it seemed like at the end of it the man was just a corpse.’’ (Nurse 2) As well as the timing of the decision there is the timing of the actual withdrawal of treatment to consider which is crucial. From the relatives point of view it is important to give them sufficient time to accept what is happening. It is equally important for the nurses as if it is premature they may feel as if they have accelerated the patient’s
256 death, but if delayed it appears undignified and uncompassionate. One senior nurse reflects on her experience: ‘‘And sometimes we get conflict where I think people want to pull out too soon, although I know the patient is going to die and I know we’re going to withdraw I think we’re doing it too soon because I think the nurses aren’t ready, the doctors aren’t ready even if the relatives are ready. And I think it’s important for us as professionals to be alright with that because if not I think it will stress the workforce. And conversely, if we leave it too long it will stress the workforce so it’s not an easy timing thing, but I do think everybody has to be happy to say yes we’re of the same thought.’’ (Nurse 8)
Emotional labour All of the participants described the difficulties of looking after patients who had their treatment withdrawn. Nurses get emotionally involved when caring for dying patients especially when they have looked after the patient over time and have got to know the family. ‘‘I think if you’ve been looking after somebody for a long time and you’ve got to know them and you are involved with the family, I think the decision to withdraw treatment is more of a personal thing that you carry on your shoulders rather than when you’re nursing somebody who is acutely ill at that moment in time and need to respond by giving ABC drug and that’s not working so withdraw it, but you’ve not had the time to build up a relationship with the person or the family, I think you consider it very differently.’’ (Nurse 1) Nurses also describe being more upset when withdrawing treatment on a young patient or a patient with whom they can identify in some way: ‘‘I think people get more upset when it’s close to themselves, maybe they are a similar age or they do similar things.’’ (Nurse 5) ‘‘The other ones that stick in my mind are the young patients because it’s obviously more stressful for the nurse as well as everyone else. Not just for the nurse but the medics find it more stressful, you know I go home thinking about the patient and I don’t with people who are older because of the saying ‘they’ve had a good innings’ you know rings true somehow.’’ (Nurse 8) Many of the participants spoke of patients who they particularly remembered. It is often bad or upsetting experiences that people remember and
R.E. McMillen there is a need to note that not all of the situations described are necessarily typical. As well as a strong sense of the emotional labour of this work there was another aspect of nurses having to deal with these decisions and the actual stopping of treatment. It is generally nurses who actually turn off the inotropic drugs and decrease ventilatory support and this was found to be a difficult task particularly for junior nurses. ‘‘I don’t think a lot about it while I’m doing it because if I did then I wouldn’t do it perhaps. And also I can say that it isn’t my responsibility because I’ve passed it on to someone else but at the same time I am physically doing it, which is aiding someone’s death isn’t it?’’ (Nurse 1) It seemed that senior nurses who had more experience of these situations were more comfortable with the actual stopping of treatment whereas the junior nurses still had a fear that they were accelerating death. Support from senior staff was sought by junior staff in this situation. However, the provision of better support and training for junior staff was viewed as an area to be improved upon by several participants.
Discussion These findings are the result of a small scale study exploring the perceptions, feelings and experiences of nurses relating to end of life decision making in one ICU in the United Kingdom (UK). The themes identified in this study are comparable with the findings of previous studies undertaken both nationally and internationally. A number of the roles of the nurse were identified in the study. It was clear that the decision to withdraw treatment rests with the consultant in charge of the patient which is consistent with national guidelines (BMA, 2001; GMC, 2006). The magnitude of that decision was realised and a degree of sympathy felt for the doctors who do have to make the ultimate decision (Oberle and Hughes, 2001). However, the respondents felt that nurses should have input into the decision and a team approach was thought to be most appropriate (BMA, 2001; Mercer et al., 1998; Viney, 1996). The nurses’ input could be facilitated by primary nursing and nurse led ward rounds. Length of intensive care experience was found to be a major factor which affected participants’ level of input into decision making. This was partly due to the fact that doctors recognised the experienced nurses’ knowledge and expertise. Junior nurses found it difficult to express their views and
End of life decisions: Nurses perceptions, feelings and experiences this meant their input was limited. This could contribute to the stressful nature of these situations for inexperienced staff. The theme of ‘planting the seed’ was an interesting one which emerged from the data. Many of the participants commented that they start thinking about the appropriateness of treatment withdrawal before the doctors, due to the amount of time the nurse spends at the patients’ bedside and with relatives (Halcomb et al., 2004). This subtle action on the part of the nurse may be fairly common but not openly documented. Once the seed was planted it was for the doctors to decide whether to let it ‘mature’ or not. This type of interaction is described in Stein’s doctor—nurse game whereby nurses communicate recommendations and courses of action without appearing to do so (Stein et al., 1990). While this work was originally undertaken in the 1960s there is evidence that this game is still being played as described by nurse 3 who talked about presenting a bleak picture. The role of being an advocate was discussed in two of the interviews involving senior nurses. Evidence suggests that many nurses feel inadequately prepared and do not act as advocates for patients because of the complex decisions and ethical principles involved (Bertolini, 1994; Mercer et al., 1998). ICU nurses do not necessarily adopt this complex role, as many patients remain sedated and ventilated it is generally not possible to determine their wishes regarding treatment. In the United States (US) a patient’s named surrogate can make decisions on their behalf, although this role is not recognised in the UK. However, the Lasting Power of Attorney will influence relatives’ contribution to decision making in the UK under the Mental Capacity Act (2005). Supporting relatives was viewed as a vital aspect of the nurse’s role in end of life decisions and care. Intensive care nurses can spend a considerable amount of time with relatives due to extended visiting hours and the severity of illness. This can provide an opportunity to get to know more about the patient. Nurses felt satisfied when they were able to give timely care to the patient and family. However, this role can be stressful when conflict or misunderstandings occur or when breaking bad news (Hardicre, 2003). In terms of nurses’ feelings about the process, timing was an important factor in withdrawal of treatment decisions. Nurses experienced frustration and distress when decisions were made too quickly or conversely when they were prolonged. The family and staff required time to get used to a change of emphasis in the patient’s care from actively treating the illness to ensuring a comfort-
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able and dignified death. One of the themes from Jones and Fitzgerald’s (1998) study was ‘being in time’. Here the nurses described the burdens they felt when their patients experienced prolonged dying processes. Schneider (1997) found that a positive aspect of a withdrawal decision for nurses was the right decision being made at the right time. It would perhaps be helpful if there was a forum for the multi-disciplinary team to discuss the patient with the opportunity for everybody involved to express an opinion based on clinical information to enable a greater understanding of each other’s perspectives. This may help to contribute to timely treatment decisions. All of the participants described experiences where their emotions were involved. Nurses who had got to know patients and relatives described feeling sad and upset when their treatment was withdrawn and sometimes took things personally (Halcomb et al., 2004). One aspect to this was when staff felt morally or ethically uneasy about the discontinuation of treatment. This is common with findings from other studies where particularly junior nurses worried about the closeness of their actions to euthanasia (Schneider, 1997; Schneider and Young, 1998). It is imperative that these anxieties are dealt with at local level as they can cause undue stress to the staff concerned. Due to the emotional labour that accompanies this work a recommendation for practice would be that support mechanisms are in place for nurses and other members of the multi-disciplinary team to discuss these issues when they occur. One method could be through informal peer debriefing and support. This study has served to increase the awareness of some of the complex issues intensive care nurses regularly face. Caring for a patient during the withdrawal of active treatment is a demanding nursing role as the focus of care changes from giving intensive life sustaining therapies to keeping the patient comfortable and ensuring a good death (Halcomb et al., 2004; Jones and Fitzgerald, 1998). Nurses experience both moral and ethical issues which may make them feel quite uneasy. Therefore, it is important for nurses to feel comfortable with the decision making processes and the timing of the withdrawal of treatment otherwise it can cause undue distress.
Rigour It is important to consider the findings of this study in the light of the limitations of the methods employed (Davies, 2001). Constructivist research quality is judged by trustworthiness and authenticity. Trustworthiness is concerned with the
258 quality of the research product, while authenticity attends to quality in the inquiry process (Rodwell, 1998). Trustworthiness can be determined via four main elements: credibility, transferability, dependability and confirmability (Lincoln and Guba, 1985). In qualitative research multiple realities are recognised and the researcher’s job is one of reporting the perspectives of the informants as clearly as possible (Field and Morse, 1994). Credibility was sought in this study by carrying out extended interviews and transcribing them in full using systematic analysis to report the perspectives of the informants clearly and reduce the potential for bias. Some peer debriefing was undertaken by the researcher with colleagues and academic supervisor to minimise the likelihood of potential stress. Transferability refers to the equivalent concept of generalisability in quantitative research. Qualitative research often uses smaller sample sizes due to the nature of the research but this does not mean that the theories or concepts cannot be of use elsewhere. Although caution should be taken by qualitative researchers in making claims for other settings (Crookes and Davies, 1998), this does not mean that the findings are not of value beyond the sample studied (Parahoo, 2006). The findings from this study could be used by others to explore practices on their own units for example, as a subject for further study it would be interesting to explore doctors’ perspectives and feelings regarding end of life decision making and care.
Conclusion The frequency of end of life decisions in intensive care has increased in recent years as modern technology enables lives to be prolonged in the face of severe illness. This is not without effect on the staff involved in making and implementing such decisions. This study has demonstrated the important contributions that nurses can make to end of life decision making and care in intensive care and how this affects them. It is clear that the senior nurses in particular wished to be included in the decision making process. It is important that nurses feel adequately supported in these roles and responsibilities so that they can continue to provide the best quality care to patients and their families.
Acknowledgement I would like to thank the participants for sharing their experiences and Dr. Sue Davies and Dr. Allyson Lipp for their encouragement and support.
R.E. McMillen
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ORIGINAL ARTICLE
End of life decisions: Nurses perceptions, feelings and experiences Rachel E. McMillen ∗ Faculty of Health, Sport and Science, Glyntaff Campus, University of Glamorgan, Pontypridd CF37 1DL, United Kingdom Accepted 8 November 2007
KEYWORDS End of life decisions; Withdrawal of treatment; Intensive care; Nurses and decision making
Summary Decisions to withdraw treatment are made on a regular basis in intensive care units. While nurses play a central role in patient care, previous studies have found that they are not always involved in withdrawal decisions. Aim: To explore the experiences of ICU nurses caring for patients who have had their treatment withdrawn and to answer two research questions: what role do nurses play and how does this affect them? Method: Constructivist grounded theory was used to explore the experiences and feelings of ICU nurses. A purposive sample of eight ICU nurses participated and semi-structured interviews were used to collect data. Framework analysis was used to facilitate systematic analysis. Results: The analysis revealed two major themes (1) the nurse’s role: experience counts, not really a nurse’s decision, planting the seed, supporting the family and being a patient advocate and (2) perceptions of the withdrawal of treatment: getting the timing right and emotional labour. Conclusions: Nurses make an important contribution to end of life decisions and care. Guidelines recommend they have input into withdrawal decisions, therefore it is imperative that nurses are supported in this role and their responsibilities to continue to provide care during withdrawal. © 2007 Elsevier Ltd. All rights reserved.
Introduction Withdrawal of treatment is a contentious issue in intensive care because it is now possible to maintain life for long periods without hope of recovery. Decisions to withdraw treatment are made daily ∗
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in intensive care units (ICUs) around the country (Winter and Cohen, 1999). Current guidance is in the form of government documents, professional guidelines and local trust policy. While doctors have British Medical Association guidance (BMA, 2001), a General Medical Council (GMC) statement (GMC, 2006) and the Intensive Care Society guidelines (2004) (Cohen et al., 2004) there is no specific guidance for nurses (Pattison, 2006).
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252 The organisation of care in ICUs puts nurses in a unique position to contribute to decision making processes, for example high nurse/patient ratios, providing care daily and forming close relationships with the patient and/or family. This provides the opportunity to discuss the wishes of the individual regarding treatment, death and dying (Watson, 1993). However, despite these factors nurses are not always asked to contribute to end of life decisions (Viney, 1996). More recent work has shown that the whole team can be involved (Mercer et al., 1998; Pattison, 2006; Woolridge and Burrows, 1999) but this may differ between units. While legal responsibility rests with the consultant in charge, BMA guidelines recognise team working and particularly the role of nurses as important when it comes to making decisions about treatment withdrawal as all health professionals involved with caring for the patient have an important contribution to make in the assessment (BMA, 2001). Nurses are recognised to have particular insight into patients’ wishes as they spend most of their time with the patient and often have considerable contact with the relatives (BMA, 2001). There is evidence to show the burden end of life decisions place on doctors and nurses working in intensive care units (Oberle and Hughes, 2001). Several studies have examined the effects these end of life decisions have on nursing staff (Halcomb et al., 2004; Hov et al., 2007; Johnson, 2002; Schneider, 1997). Following a review of the literature it was found that when nurses do not contribute to these decisions it can cause feelings of anger, frustration and powerlessness (Erlen and Frost, 1991; Watson, 1993; Yang and Mcilfatrick, 2001). As nurses will often implement the decision to withdraw or withhold treatment it can be a cause of moral distress and difficulty especially if there is disagreement. Other stressful factors included situations where there were delays in decision making resulting in unnecessary suffering for the patient and family (Halcomb et al., 2004; Hov et al., 2007; Oberle and Hughes, 2001; Schneider, 1997). Anxieties occurred due to ethical unease about the mode of treatment withdrawal and the proximity of actions to euthanasia (Schneider and Young, 1998). This was particularly a concern of more junior nurses (Yang and Mcilfatrick, 2001). A number of positive aspects of these situations were identified. Nurses felt satisfied when they could be there for the family, when patient suffering was relieved and they were allowed a peaceful, dignified death. Good decisions were considered to be timely, collaborative and include patient and family views (Johnson, 2002; Jones and Fitzgerald, 1998).
R.E. McMillen In light of the lack of published guidance for nurses and the variation in nurses’ involvement in decision making it was felt that there was room for further exploration of the role of the nurse in end of life decision making and the effects this has upon them. The specific research questions chosen were: What role do nurses play in end of life decisions in the ICU in which I worked? How does their involvement affect them?
Method In order to explore these issues more deeply a qualitative research method was used. The research design chosen was a constructivist grounded theory (Charmaz, 2000). Constructivism is a theoretical approach to social science which is based on the assumption that people create their own social world. It acknowledges that there are multiple realities and recognises the mutual creation of knowledge by the researcher and participant. A constructivist approach necessitates a relationship with participants in which they can tell their stories in their terms, and it involves listening with openness to feeling and experience (Charmaz, 2000). Grounded theory is an approach to data collection and analysis initially developed by Glaser and Strauss in the 1960s. The aim of grounded theory research is to develop theory from the data collected by the researcher (Holloway, 1997). A constructivist approach to grounded theory requires adopting a position of mutuality between the researcher and participant in the research process which requires a rethinking of the grounded theorist’s traditional role of objective observer (Mills et al., 2006). This approach was chosen because as the researcher I worked with the participants on a regular basis and had experience of the issues being discussed so it would be difficult to assume the role of an objective outsider.
Participants and setting Purposive sampling was used for this study which is common in qualitative research. In purposive sampling generalisability is less important than collection of ‘rich’ data and an understanding of the ideas of the participants (Holloway, 1997). The sample comprised eight qualified nurses from one ICU in the north of England. There were three senior nurses (grades F/G) with up to 20 years experience and five E grade staff nurses with 6 months to 7 years experience. The researcher was working as
End of life decisions: Nurses perceptions, feelings and experiences an E grade staff nurse on the 6 bedded unit at the time of the study.
Ethical considerations Approval was obtained from the Local Research Ethics Committee and the clinical nurse manager for the unit prior to undertaking the study and approaching participants. Before each interview participants gave formal written consent. Due to the sensitive nature of the subject matter it was made clear that those who chose to take part in the study were able to withdraw at any time. Confidentiality was maintained by omitting names on the transcript or tape so that participants could not be identified. The interviews were labelled by number.
Data collection Data were collected using a semi-structured interview guide. Interviewing is a favoured method of data collection in qualitative research as it produces ‘rich data’ (Holloway, 1997). While collecting all the important information about the research topic participants can still be given the opportunity to describe their own thoughts and feelings. This method of data collection is useful because prior knowledge can be used to allow the interviewer to focus on issues of particular importance to the research question and clarify comments by the participants. The researcher’s background allowed insight into the participants’ experiences during the interviews in line with the constructivist approach to create a true dialogue and dismantle power imbalances. The interviews took place during the summer of 2002 and were arranged at a convenient time and place for the participants. They were conducted in the participants’ own time and lasted from 40 min to 1 h. All interviews were audio-taped and a consent form was signed with the assurance that confidentiality would be maintained and the interviews could be stopped at any point if the participant requested.
Data analysis Following each interview the tape recordings were transcribed verbatim by the researcher. Data collected through qualitative research is invariably unstructured and often text based. The qualitative researcher has to provide some structure and coherence to the large amount of data while retaining a hold of the original accounts and observations from which it is derived (Holloway, 1997). To facil-
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itate this framework analysis designed by Richie and Spencer (1994) was used. This method shares common features with thematic analysis. Framework analysis is designed to facilitate systematic analysis of the data. It is an inductive approach and uses the constant comparative method which is a key feature of grounded theory. This approach was chosen because it is systematic, easy to follow and consistent with a constructivist perspective. Five key stages to the process are identified: familiarisation, identifying a thematic framework, indexing, charting and mapping and interpretation (Richie and Spencer, 1994). It is possible either for all the data to be collected before analysis occurs or equally for data collection and analysis to occur concurrently (Lacey and Luff, 2001). The constant comparative approach was used so that in line with the constructivist nature of the inquiry some of the findings from earlier interviews could be fed into subsequent interviews by a process known as the hermeneutic cycle (Rodwell, 1998). Familiarisation with the data occurred by transcribing and reading the data thoroughly and repeatedly. During this process key themes emerging were identified and highlighted. This process of identifying a thematic framework is developed and refined during subsequent stages (Lacey and Luff, 2001). The process of indexing is similar to coding in other types of qualitative data analysis. Data were indexed by applying textual codes to specific pieces of data, grouping the themes together and then charting them using the headings from the thematic framework. Charting can be done by case or theme (Lacey and Luff, 2001). In this study case charts were created with quotes from each respondent across all themes. The final stage is where patterns, associations, concepts and theory are sought from the data. This is often generated when sampling has reached ‘theoretical saturation’ of the data where no new data were emerging and when the theory fully explains the variation in the data (Strauss and Corbin, 1990). Theoretical saturation did not occur in the study due to the small number of participants interviewed which was partly determined by limited resources. However, this does not mean that the findings cannot contribute to knowledge and practice (Parahoo, 2006). The results from this study could act as a pilot for a more robust future study.
Findings The themes from the data address the two research questions which were identified. They are presented under two main headings: the nurse’s role
254 and perceptions about the withdrawal of treatment.
The nurse’s role The following themes relate to the significant aspects of the nurse’s role in end of life decision making in ICU.
Experience counts Experience was a major factor in the differing responses to the questions asked at the interviews. One aspect of this was that senior nurses were recognised by the consultants and they seemed to listen to them: ‘‘It depends if they recognise you. The longer you’ve been there the more they value your opinion.’’ (Nurse 6) ‘‘I think I have a bigger say because people recognise that I am a senior nurse and recognise that I have had experience.’’ (Nurse 8) This is perhaps unsurprising as the senior nurses had more experience of dealing with end of life decisions and the consultants are likely to recognise this. Length of experience within ICU is evidently a factor in how much consideration is given to nurses’ views. More experienced nurses indicated the great caution with which they approached such decisions. This was influenced by their experience of looking after patients who had had their treatment withdrawn and then subsequently got better. Although rare, these situations had obviously affected their views. They alluded to the fact that junior staff had probably not seen this happen and therefore did not have the benefit of experience. Furthermore, it was more difficult for junior nurses to express their views. The junior nurses made reference to their lack of confidence and the expectation that they may not be listened to as they were not recognised as possessing enough experience.
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Not really a nurses’ decision All of the participants felt that the decision to withdraw treatment was not theirs. Rather it was the decision of the consultant anaesthetist. When asked if they played any part in the actual decision one participant replied: ‘‘No, and I don’t think I’d ever want to either because at the end of the day it’s somebody’s father, brother, mother whatever. No amount of money in the world could ever get me to make that decision I don’t think and I don’t know how they (the consultants) sleep at night sometimes.’’ (Nurse 3) However, there was some feeling that nurses should have a degree of input and be able to express an opinion as they spend most time with the patient and family and they pass on required information to the medical staff. Primary nursing and nurse led ward rounds were both mentioned as positive measures for nurses to get more involved in patient care and decision making. One of the senior nurses spoke of supporting the doctor in decision making, a theme which none of the other participants mentioned. This was achieved by giving different perspectives and making sure it was sound by questioning the rationale. ‘‘I think I have a role in supporting the physician who makes the decision because I think it’s unfair to leave someone lonely in that decision and I think it helps them rationalise. I think also to contribute in a way where the medic might not have thought of everything and to shed light on the compassion side.’’ (Nurse 8) Clearly although nurses do not actually make the decision to withdraw treatment, they can have an invaluable role in providing both clinical information and views of the family and they can have a significant input into the decision making process.
Planting the seed
‘‘I don’t say anything because presently nobody’s going to take me seriously because I’ve not been there long enough.’’ (Nurse 1)
This refers to the process of the nurse starting to hint to the medical staff that maybe it is time to think about withdrawing treatment. The consensus in the interviews was that nurses seem to think that it is appropriate to withdraw treatment on a patient before the medical staff, as one participant reflects:
Consultants were viewed as powerful people who by nature of their position have lots of experience and junior nurses were almost fearful to speak up around them.
‘‘It’s generally the nurses that want to withdraw first before the doctors but that’s possibly because the nurses are there all the time with the patient and the relatives and the doctors aren’t, they just
End of life decisions: Nurses perceptions, feelings and experiences tend to come and look at the numbers at the end of the bed and some doctors are like that, others aren’t it depends.’’ (Nurse 5) As nurses spend most of their time at the bedside and with the relatives, they tend to be more aware of when a patient is not responding to treatment. This concept of planting the seed seems to be a subtle way for nurses to suggest a particular course of action. ‘‘We have a little bit of say on the ward rounds, if you paint a bleak picture the consultant can either listen to you or totally ignore you and look at the facts and figures for himself, and I think a little bit of experience counts here with the nurses because the consultants seem to listen a bit more to experienced nurses, and you know if you paint quite a bleak picture they will sit back and listen to you and you know the bleaker the picture the more they think, you know its probably just at the back of your mind, but you know you’ve planted the seed and they can do with it what they want really. They can either let it mature and go for the withdrawal process after they’ve spoken to the family or continue for another 24—48 h.’’ (Nurse 3)
Supporting the family All of the participants talked about their role in supporting the patient’s family during the time a withdrawal decision is being made. As nurses spend most time with the patient’s family they are the ones who provide support at this difficult time. Participants talked about their responsibility to find out the family’s views and to do the groundwork preparing them for bad news.
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Being a patient advocate Two participants spoke about their role as patient advocate and they were both very experienced nurses. It is evident that it is not a straightforward role when working with incompetent adults. ‘‘The only way to get a proper picture (of the patient) is by talking to the people who know them best, and then it puts you in a better position to be their advocate. I do think the role of being a nurse and being a patient advocate don’t interknit very well because I think you’ve still got your preconceived ideas, and your development as a person still affects how you look at somebody else and you can’t even in a fortnight with somebody who is unable to communicate with you, you’ve still got someone else’s interpretation of them which is what you’re going on.’’ (Nurse 4) One further aspect of the nurse’s role as patient advocate mentioned is the duty to protect the patient’s safety and legal position and to ensure the decision is a sound one. The themes presented here have shown how nurses are involved in decision making and what they perceive their role to be in the withdrawal of treatment from patients in ICU. The second heading relates to how nurses feel about the withdrawal process and how these decisions affect them.
Perceptions of the withdrawal of treatment These themes encompass many smaller themes which refer to the many personal feelings and experiences of participants about treatment withdrawal.
Getting the timing right ‘‘I always try to bring the relatives with us so that if their relative is deteriorating and is not going to get any better when the doctor does come round and speak to them the groundwork has been done, they are prepared for bad news.’’ (Nurse 3) Another participant saw their role as including seeing to the family’s practical needs. ‘‘Supporting the family, I think basically that’s what you have to do, the whole build up to it and the actual doing it if you like and getting the family there and the whole practical side as well, because there’s a huge practical side you know, where they can stay if they want to stay, there’s the car parking even, things like making sure they eat.’’ (Nurse 7)
The concept of timing emerged as an important factor in withdrawal of treatment decisions. Getting the timing right is important not only for the patient and relatives but also the staff. ‘‘We withdrew not soon enough, it was shocking. . .I just thought why couldn’t it have been done sooner because it seemed like at the end of it the man was just a corpse.’’ (Nurse 2) As well as the timing of the decision there is the timing of the actual withdrawal of treatment to consider which is crucial. From the relatives point of view it is important to give them sufficient time to accept what is happening. It is equally important for the nurses as if it is premature they may feel as if they have accelerated the patient’s
256 death, but if delayed it appears undignified and uncompassionate. One senior nurse reflects on her experience: ‘‘And sometimes we get conflict where I think people want to pull out too soon, although I know the patient is going to die and I know we’re going to withdraw I think we’re doing it too soon because I think the nurses aren’t ready, the doctors aren’t ready even if the relatives are ready. And I think it’s important for us as professionals to be alright with that because if not I think it will stress the workforce. And conversely, if we leave it too long it will stress the workforce so it’s not an easy timing thing, but I do think everybody has to be happy to say yes we’re of the same thought.’’ (Nurse 8)
Emotional labour All of the participants described the difficulties of looking after patients who had their treatment withdrawn. Nurses get emotionally involved when caring for dying patients especially when they have looked after the patient over time and have got to know the family. ‘‘I think if you’ve been looking after somebody for a long time and you’ve got to know them and you are involved with the family, I think the decision to withdraw treatment is more of a personal thing that you carry on your shoulders rather than when you’re nursing somebody who is acutely ill at that moment in time and need to respond by giving ABC drug and that’s not working so withdraw it, but you’ve not had the time to build up a relationship with the person or the family, I think you consider it very differently.’’ (Nurse 1) Nurses also describe being more upset when withdrawing treatment on a young patient or a patient with whom they can identify in some way: ‘‘I think people get more upset when it’s close to themselves, maybe they are a similar age or they do similar things.’’ (Nurse 5) ‘‘The other ones that stick in my mind are the young patients because it’s obviously more stressful for the nurse as well as everyone else. Not just for the nurse but the medics find it more stressful, you know I go home thinking about the patient and I don’t with people who are older because of the saying ‘they’ve had a good innings’ you know rings true somehow.’’ (Nurse 8) Many of the participants spoke of patients who they particularly remembered. It is often bad or upsetting experiences that people remember and
R.E. McMillen there is a need to note that not all of the situations described are necessarily typical. As well as a strong sense of the emotional labour of this work there was another aspect of nurses having to deal with these decisions and the actual stopping of treatment. It is generally nurses who actually turn off the inotropic drugs and decrease ventilatory support and this was found to be a difficult task particularly for junior nurses. ‘‘I don’t think a lot about it while I’m doing it because if I did then I wouldn’t do it perhaps. And also I can say that it isn’t my responsibility because I’ve passed it on to someone else but at the same time I am physically doing it, which is aiding someone’s death isn’t it?’’ (Nurse 1) It seemed that senior nurses who had more experience of these situations were more comfortable with the actual stopping of treatment whereas the junior nurses still had a fear that they were accelerating death. Support from senior staff was sought by junior staff in this situation. However, the provision of better support and training for junior staff was viewed as an area to be improved upon by several participants.
Discussion These findings are the result of a small scale study exploring the perceptions, feelings and experiences of nurses relating to end of life decision making in one ICU in the United Kingdom (UK). The themes identified in this study are comparable with the findings of previous studies undertaken both nationally and internationally. A number of the roles of the nurse were identified in the study. It was clear that the decision to withdraw treatment rests with the consultant in charge of the patient which is consistent with national guidelines (BMA, 2001; GMC, 2006). The magnitude of that decision was realised and a degree of sympathy felt for the doctors who do have to make the ultimate decision (Oberle and Hughes, 2001). However, the respondents felt that nurses should have input into the decision and a team approach was thought to be most appropriate (BMA, 2001; Mercer et al., 1998; Viney, 1996). The nurses’ input could be facilitated by primary nursing and nurse led ward rounds. Length of intensive care experience was found to be a major factor which affected participants’ level of input into decision making. This was partly due to the fact that doctors recognised the experienced nurses’ knowledge and expertise. Junior nurses found it difficult to express their views and
End of life decisions: Nurses perceptions, feelings and experiences this meant their input was limited. This could contribute to the stressful nature of these situations for inexperienced staff. The theme of ‘planting the seed’ was an interesting one which emerged from the data. Many of the participants commented that they start thinking about the appropriateness of treatment withdrawal before the doctors, due to the amount of time the nurse spends at the patients’ bedside and with relatives (Halcomb et al., 2004). This subtle action on the part of the nurse may be fairly common but not openly documented. Once the seed was planted it was for the doctors to decide whether to let it ‘mature’ or not. This type of interaction is described in Stein’s doctor—nurse game whereby nurses communicate recommendations and courses of action without appearing to do so (Stein et al., 1990). While this work was originally undertaken in the 1960s there is evidence that this game is still being played as described by nurse 3 who talked about presenting a bleak picture. The role of being an advocate was discussed in two of the interviews involving senior nurses. Evidence suggests that many nurses feel inadequately prepared and do not act as advocates for patients because of the complex decisions and ethical principles involved (Bertolini, 1994; Mercer et al., 1998). ICU nurses do not necessarily adopt this complex role, as many patients remain sedated and ventilated it is generally not possible to determine their wishes regarding treatment. In the United States (US) a patient’s named surrogate can make decisions on their behalf, although this role is not recognised in the UK. However, the Lasting Power of Attorney will influence relatives’ contribution to decision making in the UK under the Mental Capacity Act (2005). Supporting relatives was viewed as a vital aspect of the nurse’s role in end of life decisions and care. Intensive care nurses can spend a considerable amount of time with relatives due to extended visiting hours and the severity of illness. This can provide an opportunity to get to know more about the patient. Nurses felt satisfied when they were able to give timely care to the patient and family. However, this role can be stressful when conflict or misunderstandings occur or when breaking bad news (Hardicre, 2003). In terms of nurses’ feelings about the process, timing was an important factor in withdrawal of treatment decisions. Nurses experienced frustration and distress when decisions were made too quickly or conversely when they were prolonged. The family and staff required time to get used to a change of emphasis in the patient’s care from actively treating the illness to ensuring a comfort-
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able and dignified death. One of the themes from Jones and Fitzgerald’s (1998) study was ‘being in time’. Here the nurses described the burdens they felt when their patients experienced prolonged dying processes. Schneider (1997) found that a positive aspect of a withdrawal decision for nurses was the right decision being made at the right time. It would perhaps be helpful if there was a forum for the multi-disciplinary team to discuss the patient with the opportunity for everybody involved to express an opinion based on clinical information to enable a greater understanding of each other’s perspectives. This may help to contribute to timely treatment decisions. All of the participants described experiences where their emotions were involved. Nurses who had got to know patients and relatives described feeling sad and upset when their treatment was withdrawn and sometimes took things personally (Halcomb et al., 2004). One aspect to this was when staff felt morally or ethically uneasy about the discontinuation of treatment. This is common with findings from other studies where particularly junior nurses worried about the closeness of their actions to euthanasia (Schneider, 1997; Schneider and Young, 1998). It is imperative that these anxieties are dealt with at local level as they can cause undue stress to the staff concerned. Due to the emotional labour that accompanies this work a recommendation for practice would be that support mechanisms are in place for nurses and other members of the multi-disciplinary team to discuss these issues when they occur. One method could be through informal peer debriefing and support. This study has served to increase the awareness of some of the complex issues intensive care nurses regularly face. Caring for a patient during the withdrawal of active treatment is a demanding nursing role as the focus of care changes from giving intensive life sustaining therapies to keeping the patient comfortable and ensuring a good death (Halcomb et al., 2004; Jones and Fitzgerald, 1998). Nurses experience both moral and ethical issues which may make them feel quite uneasy. Therefore, it is important for nurses to feel comfortable with the decision making processes and the timing of the withdrawal of treatment otherwise it can cause undue distress.
Rigour It is important to consider the findings of this study in the light of the limitations of the methods employed (Davies, 2001). Constructivist research quality is judged by trustworthiness and authenticity. Trustworthiness is concerned with the
258 quality of the research product, while authenticity attends to quality in the inquiry process (Rodwell, 1998). Trustworthiness can be determined via four main elements: credibility, transferability, dependability and confirmability (Lincoln and Guba, 1985). In qualitative research multiple realities are recognised and the researcher’s job is one of reporting the perspectives of the informants as clearly as possible (Field and Morse, 1994). Credibility was sought in this study by carrying out extended interviews and transcribing them in full using systematic analysis to report the perspectives of the informants clearly and reduce the potential for bias. Some peer debriefing was undertaken by the researcher with colleagues and academic supervisor to minimise the likelihood of potential stress. Transferability refers to the equivalent concept of generalisability in quantitative research. Qualitative research often uses smaller sample sizes due to the nature of the research but this does not mean that the theories or concepts cannot be of use elsewhere. Although caution should be taken by qualitative researchers in making claims for other settings (Crookes and Davies, 1998), this does not mean that the findings are not of value beyond the sample studied (Parahoo, 2006). The findings from this study could be used by others to explore practices on their own units for example, as a subject for further study it would be interesting to explore doctors’ perspectives and feelings regarding end of life decision making and care.
Conclusion The frequency of end of life decisions in intensive care has increased in recent years as modern technology enables lives to be prolonged in the face of severe illness. This is not without effect on the staff involved in making and implementing such decisions. This study has demonstrated the important contributions that nurses can make to end of life decision making and care in intensive care and how this affects them. It is clear that the senior nurses in particular wished to be included in the decision making process. It is important that nurses feel adequately supported in these roles and responsibilities so that they can continue to provide the best quality care to patients and their families.
Acknowledgement I would like to thank the participants for sharing their experiences and Dr. Sue Davies and Dr. Allyson Lipp for their encouragement and support.
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