Intensive and Critical Care Nursing (2016) 33, 30—38

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ORIGINAL ARTICLE

Intensive care nurses’ experiences of end-of-life care Leah C. Kisorio ∗, Gayle C. Langley 1 Department of Nursing Education, Faculty of Health Sciences, University of the Witwatersrand, 7 York Road, Park Town 2193, Johannesburg, South Africa Received 14 March 2015; received in revised form 25 September 2015; accepted 20 November 2015

KEYWORDS End-of-life care; Intensive care; Nurses’ experiences of end-of-life; Palliative care; Withdrawal and withholding of treatment

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Summary Purpose: To explore intensive care nurses’ experiences of end-of-life care in adult intensive care units. Design and methods: An exploratory, descriptive qualitative approach was utilised. Purposive sampling method was used to select nurse participants (n = 24) working at the selected intensive care units in the three academic affiliated, tertiary specialist hospitals in the Johannesburg and Pretoria regions, South Africa. Using a focus group guide, three focus group discussions were conducted. Data were analysed using the long-table approach (Krueger and Casey, 2000). Trustworthiness of the study was ensured by following the criteria set out by Lincoln and Guba (1985). Findings: Five major themes related to nurses’ experiences of end-of-life care emerged. These included: ‘‘difficulties we experience’’, ‘‘discussion and decision making’’, ‘‘support for patients’’, ‘‘support for families’’ and ‘‘support for nurses’’. Conclusion: End-of-life care can be difficult and a challenging process. Nevertheless, this study has highlighted some of the interventions and support systems that could be incorporated for improved caring process. Whereas the dying patients and their families need to be continuously supported, critical care nurses too need to be taken care of for them to continue providing the best possible end-of-life care. © 2015 Elsevier Ltd. All rights reserved.

Corresponding author. Tel.: +27 766 813 094; fax: +27 11 488 4195. E-mail addresses: [email protected] (L.C. Kisorio), [email protected] (G.C. Langley). Tel.: +27 11 488 4270; fax +27 11 488 4195.

http://dx.doi.org/10.1016/j.iccn.2015.11.002 0964-3397/© 2015 Elsevier Ltd. All rights reserved.

Intensive care nurses’ experiences of end-of-life care

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Implications for Clinical Practice • Relieve the nurse of all other responsibilities in order for him or her to have time to focus on caring for the dying patient and the family. • As a form of collegial support, senior and experienced nurses should mentor the junior and newly qualified nurses to improve end-of-life care and enhance their coping abilities. • As a nurse’s coping strategy, let a group of nurses take turns caring for a dying patient by means of change of shifts on a daily basis.

Introduction Whereas critical care physicians and nurses care for critically ill patients with the primary goals of saving lives and restoring function (Festic et al., 2010), there is evidence that approximately 20% of intensive care unit (ICU) patients die in this setting each year (Coombs et al., 2012). Many of these deaths involve withholding or withdrawing lifesustaining therapies and, in these situations, the role of ICU nurses shifts from providing life sustaining measures to end-of-life care (Espinosa et al., 2010). ICU nurses’ involvement in end-of-life care differs from setting to setting. For example, in a European study that comprised of 162 respondents, the majority (n = 145/158, 91.8%) indicated direct involvement in end-of-life patient care, 73.4% (n = 116/158) reported active involvement in the decision-making process while 78.6% (n = 125/159) expressed commitment to family involvement in decisions (Latour et al., 2009). A South African study that involved 100 participants revealed that 76% (n = 68/90) of nurses had had direct involvement in end-of-life care of patients, 35% (n = 24/68) had been actively involved in the decision making process whereas 86% (n = 85/99) were committed to family involvement in decisions (Langley et al., 2013). In a study from Turkey, all (n = 602) nurse participants stated that they had had direct involvement in end-of-life care of patients. Of these nurses, 25.2% (n = 152) had been actively involved in discussions about end-of-life decisions while 78.4% (n = 472) were committed to family involvement in decisions (Badır et al., 2015). Nurses are in a central position to improve care for dying patients and their families by challenging current end-oflife practices in their settings (Zomorodi and Lynn, 2010). King and Thomas (2013) state that nurses accept the reality of death and express strong commitment to making it as comfortable, peaceful and dignified as possible. However, providing the best possible care at end-of-life is a challenge to intensive care nurses (Coombs et al., 2012). The care process exposes ICU nurses to grief and human suffering (Ranse et al., 2012), creates anxiety and uncertainty on how to cope with the procedures that surround death (Peters et al., 2013) as well as burnout and emotional exhaustion (Ryan and Seymour, 2013). While nurses play a pivotal role in helping both patient and family to have positive and meaningful experiences at the end-of-life (Ranse et al., 2012), nurses have reported difficulties in this role (Iglesias et al., 2013). They have expressed difficulty in balancing their professional role and personal feelings, leaving them questioning whether they are ‘doing the right thing’ (Efstathiou and Walker, 2014).

Nurses have also identified barriers to providing optimal care contributing to their frustrations (Espinosa et al., 2010; Festic et al., 2010). Critical care nurses report a lack of preparation in dealing with end-of-life care in the intensive care environment (Zomorodi and Lynn, 2010), a report that could be associated with inadequate education about end-of-life care at pre-registration level (Cavaye and Watts, 2014). The care patients receive in the ICU is highly dependent on the ICU nurse’s knowledge, skill and comfort level in caring for the dying patient and the family (Harris et al., 2014). For this reason, education and training opportunities are essential to ensure ICU nurses develop the right knowledge and attitude to provide high-quality end-of-life care (Efstathiou and Walker, 2014). There is a report that insufficient emotional and organisational support may influence the care provided and affect nurses’ experiences of end-of-life care, stress and ability to cope (Ranse et al., 2012). Harris et al. (2014) mention that nurses are the caregivers who provide the most direct care and spend the most time with patients and their families thus, it is essential that they feel empowered and are given the necessary support to provide optimal end-of-life care. Compared to the developed and other developing countries, South Africa has a quadruple burden of disease specifically because of its added burden of injuries and HIV/AIDS (Econex, 2009). An ICU mortality rate of 31.5% (De beer et al., 2011) shows that death and dying is a common occurrence in this setting. A previous study revealed that nurses have direct involvement in end-of-life care of patients and families in this setting (Langley et al., 2013). Despite of this, little is known about ICU nurses’ experiences of providing end-of-life care. This study thus aims to explore South African ICU nurses’ experiences of end-of-life in order to provide a basis for the development of interventions and support systems in the provision of quality end-of-life care.

Method Research design, setting, sampling and sample An exploratory, descriptive, qualitative design was utilised. Nurses working in general (medical—surgical), trauma and cardiothoracic adult ICUs at three academic affiliated tertiary (referral) hospitals in the Johannesburg and Pretoria regions were purposively selected. Three focus group discussions (one from each hospital) were conducted. In total, twenty-four nurses participated in the study. The inclusion criteria were: nurses who had more than six months’ experience in the unit, permanently working in the adult ICUs at

32 Table 1

L.C. Kisorio, G.C. Langley Table 2

Sample characteristics (n = 24).

Demographic information Gender Male Female Age group in years 31—40 41—50 51—59 60—69 Years of ICU experience 2—5 6—10 11—15 16—20 >21 Level of training Post basic diploma in critical care nursing Postgraduate diploma in critical care nursing Masters degree in critical care nursing

F (%) 2 (8.33) 22 (91.67) 7 (29.17) 6 (25.00) 9 (37.50) 2 (8.33) 1 (4.17) 9 (37.50) 8 (33.33) 4 (16.67) 2 (8.33) 14 (58.33) 8 (33.33) 2 (8.33)

the selected study sites and provided written consent to participate had been obtained. Refer to Table 1 for the sample characteristics.

Focus group discussion guide.

Introduction: Experience in caring for critically ill patients make you ‘experts’ in intensive care. 1. Today we are here to talk about end-of-life care in ICU. What comes to your mind when you think about caring for a patient at end-of-life? Probes a. I am sure you have an experience of patients dying in ICU, is it difficult or easy? b. How do you experience this process? (Stories of caring for patients and family elicited) 2. What would you recommend as absolutely important to ensure good end-of-life care? Probes a. Can you please elaborate? b. What about the family, what would be essential to ensure good family care? 3. What do you think the patients themselves would recommend? 4. What do you think the families would recommend? 5. How do you feel about their wishes? 6. What would be very helpful even if not imperative to assist you to render end-of-life care? 7. What would you need to support the care for you at this difficult time? 7. Would you like to add anything more? Thank you so much for sharing your expertise and experiences.

Ethical considerations Ethical approval and permission to conduct the study was obtained from the relevant university Ethics and postgraduate committees (reference M10525 and 209/2011), Department of Health and hospital authorities. Participation was voluntary with the right to withdraw at any time. Separate written informed consents were obtained for participation in the study and for the use of a tape recorder. To ensure anonymity, numbers were used instead of participants’ real names and data were kept in a password protected computer.

Data collection After obtaining permission from the respective hospitals, ICU nurse managers were approached and informed of the study including its procedures, invited to participate in the study, and, at the same time, their assent gained prior to approaching their staff. With their assistance, staff duty rosters were obtained and all nurses who did not meet the inclusion criteria excluded. Appropriate times to prevent nurses going off to interview whilst on duty were discussed. Following recommended strategies (De Vos et al., 2011), the researcher (L.K.C.) personally approached, invited and informed each potential participant about the proposed study and its procedures. Out of those who expressed an interest in participating, a total of twenty-four nurses whose time schedule permitted them to take part were chosen from the three hospitals. Three focus group discussions were

conducted comprising of: nine, seven and eight participants in groups one, two and three respectively. Focus group discussions were conducted four weeks apart during the day in a private room near the unit. Nurses were invited to the group interviews to share their experiences of end-of-life care in the ICU. To start with, the first opening question was posed as follows: ‘‘Experience in caring for critically ill patients make you ‘experts’ in intensive care, what comes to your mind when you think about caring for a patient at end-of-life in the ICU?’’ Participants were encouraged to share their views as much as possible. Where necessary, probes were used to deepen the response to a question or for clarification. To maintain the focus of the discussions, a focus group guide (Table 2) was used. The discussions lasted between one to one and a half hours. Trustworthiness of the study was maintained following criteria by Lincoln and Guba (1985). To ensure transferability, a detailed description of the methodology and process of data collection is provided so as to allow judgements about applicability to be made by the reader. Participants’ direct quotes have been provided when presenting the findings. To ensure an accurate reflection of the participants’ opinions, member checking was performed before the end of each interview. Conformability was attained by having transcripts analysed individually by both authors before meeting together to compare, correlate and discuss the emerging themes.

Intensive care nurses’ experiences of end-of-life care Table 3 Themes and sub themes emerging from focus group discussions. Themes

Sub-themes

Difficulties we experience

Psychological and emotional stress Tell or not Wanting to hear what they want to hear

Discussion and decision making

Told not involved Being on the same page

Support for patients

Spiritual support Until nature takes its course Presence Noise

Support for families

Support for nurses

Support person Respect Open access Staying with them Gradual preparation Just to talk with somebody Team work Training Shift changes Time to adjust

Data analysis Verbatim transcription was completed immediately following each focus group discussion in preparation for data analysis. Field notes were inserted in the transcripts. Each transcript was read and re-read in conjunction with the audio-taped recording and corrections made where necessary. Data were then analysed using the long-table approach which allows one to categorise results and identify themes (Krueger and Casey, 2000). A descriptive summary of each group’s responses was written so as to allow comparison and contrast, emphasising comments that were specific, detailed and frequently discussed. Following the descriptive summary for each of the questions, themes and sub-themes (Table 3) were developed by looking for things that came up repeatedly across the questions.

Findings Five major themes describing ICU nurses’ experiences of end-of-life care emerged from the focus group discussions. These included: ‘‘difficulties we experience’’, ‘‘discussion and decision making’’, ‘‘support for patients’’, ‘‘support for families’’ and ‘‘support for nurses’’. Each of these themes will be described and illustrated by means of extracts as follows. Difficulties we experience Participants reported that caring for patients at end-of-life is, in various ways a challenging and a difficult process. Regarding psychological and emotional challenges, caring for the dying patients was considered to be painful,

33 touching, traumatic, heartbreaking, depressing, draining, disturbing and stressful. It was more traumatising if the patient was either of a younger age or had built a relationship with the nurses. For example, ‘‘the age of the patient is touching and has got effect; the young ones touch me the most because they still have the future’’ (nurse 20). Nurse 14 added: ‘‘The most stressing thing is when you have built relationship with the patient. Then you have to go through looking at hemodynamic going down until the end. Unlike the patient who comes in with MVA or PVA and things happen quickly and it’s over’’. Disclosing information to the family was one of the challenging issues participants reported. They stated that sometimes they are not sure whether ‘to tell’ or ‘not to tell’ because telling could ‘‘put them in a tight corner’’ (nurse 19) as families could use their (nurses’) words against them: ‘‘You don’t know what to tell them. Others want you to make promises. They want to find something to blame you; I don’t talk to them a lot. I refer them to the doctor’’ (nurse 2). The other challenge was dealing with families in denial. Nurse 13 said: ‘‘I have seen some of them respond with anger, anxiety and are trouble makers’’. Others said that families respond differently to bad news and their harsh reactions could be due to their emotional distress. Nurse 17 explained: ‘‘. . .difficulty we get is denial from the families who will tell you what you are telling us is not right. When you talk to them you will hear them, they want to hear what they want to hear. But as a nurse you know we have stages of grieving, they will deny/cry/shout/blame and eventually accept. So you take it as one of those steps and deal with it as it comes’’. Discussion and decision making When asked whether they are involved in discussion and decision making processes, the majority said no. Nurse 23 said, ‘‘. . .we don’t get involved, they (doctors) discuss, we don’t decide, they decide and then they come and tell us we are going to do this. . . and that is it’’. In a few cases where the doctors sought the nurses’ opinions on already made decisions, the participants reported that they would give their views and advocate for the patient if necessary. Nurse 24, the most experienced participant said: ‘‘. . .we don’t do the decisions. It depends on the doctors, others will just come and turn the knob but others do discuss. At times they accept what we tell them’’. Participants mentioned that they would like to be involved so that ‘‘everybody is on the same page’’ (Nurse 16). They felt that, apart from enhancing team work, they spent the longest time with the patient and they believed that they should contribute towards decisions regarding patient care; raising their concerns and advocating for the patient where necessary. Nurse 6 said:

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L.C. Kisorio, G.C. Langley ‘‘. . .it is team work in the ICU and I am most of the time with the patient. Whatever decisions, I should also be part of the team so that we discuss it together. I am part of it and want to know where they (doctors) are coming from’’.

Support for patients Support for patients implied care which would promote comfort as they approach death. Even though they all believed that spiritual and religious support is necessary, not all participants were ready to offer this support as nurse 2 said: ‘‘It is not our specialty to pray for them, there are people who are there to pray for them’’. In most cases the families organised for a spiritual leader to pray for the patient. Where the patient did not have either a spiritual leader or family around, nurses contacted either a support organisation or a spiritual leader for the service as nurse 19 said: ‘‘we usually call somebody from HospiVison’’. However, it was reported that this was not always easy. Nurse 13 explained: ‘‘We had to organize for another patient but it was difficult. They were asking us from which parish, diocese, church, all those complications. To make our work easy, the hospital should organize specific leaders on standby to contact when needed’’. Keeping the patient as comfortable as possible ‘‘until nature takes it course’’ (nurse 18) was another form of patient support. In terms of maintaining basic nursing care, nurse 11 pointed out: ‘‘we do all nursing care that you do to a person who has a potential to live. We don’t stop, we bath, turn, suction, change. . .’’. To ensure that the patient remained as pain free as possible, nurse 21 explained: ‘‘usually they don’t remove sedatives and analgesics; as a nurse, you ensure that this patient is not in pain by administering these medications as needed’’. A flaw reported affecting patients’ comfort was that noise had become normal in the ICU and needed to be rectified: ‘‘. . .noise is like normal, everybody is making noise. Noise level needs to be down, even the people with the presentations around the ward, they mustn’t make noise. You hear somebody shouting as if in the streets’’ (nurse 12). Encouraging and allowing families to be present at the patient’s bedside acted as a form of support in that patients felt comfortable with their families around. Nurse 13 stated: ‘‘. . .most patients prefer the love and support of the family. They look at the family with those eyes that they feel safe and secure. Hearing their voices make them stronger. We encourage them to come just to hold hands; we need somebody to be at peace’’. Although not commonly practiced, participants supported the wish for those families who were willing to take part in direct patient care. This was considered as a way to calm the family, a source of fulfilment and a means of

encouraging communication between the family and the patient. Nurse 18 reported: ‘‘. . .if they want to have direct care, we allow them, they interact that way. That is what we did last week, they combed her hair, tied ribbons. . .. it also calms them down, they feel they have seen her, they get fulfilment’’. When asked whether they always stay with the patient at the bedside when death is about to occur and where the family is not present as a form of support, nurse 22 said: ‘‘. . .because of shortage of staff, there is no much time to spend with them. There are other things to do’’. Support for families This theme highlighted some of the supportive services for the families with dying patients. In as much as the families’ initial contact in the ICU would be the nurses and the doctors, the participants reported that they would wish to offer as much support as they can but felt they don’t have much time for the family due to their other responsibilities. While they can do the little they can, participants suggested that there should be specialised persons in the units assigned to offer various forms of support to the family: ‘‘. . .other disciplines such as social workers, psychologists, counsellors, church leaders can come and assess, support, reassure, pray and calm the situation because somebody feels so helpless’’ (nurse 22). Respecting the patient’s and families’ cultural practices and rituals was also reported as an important form of family support, provided these practices were not hazardous to patients, staff or institution. Nurse 6 said: ‘‘We respect their culture and beliefs. If they believe in inyangas (traditional healers), let them have them around, not only the religious people. We give them opportunity to practice their beliefs as long as they don’t give anything orally or affect other patients’’. Supporting families through open visitation was reported. In all the participating hospitals, families of dying patients were allowed an unrestricted access to the unit except during a procedure that needed privacy. Nurse 4 said: ‘‘. . .if they want to come in 24 hours it is allowed. We frequently tell them to come and stay with the patient as they wish. It might be their last moments together’’. Another form of family support considered was nurses’ presence. Staying with the family for longer periods was not possible but most participants mentioned that it was necessary to create some time to be present for the family while they visited the patient because ‘‘if the relatives find a nurse in the patient’s room, they will have confidence that the patient is being looked after than not to find somebody there’’ (nurse 15). Nurses could also use their presence for reassurance. Nurse 11 expressed, ‘‘sometimes they are anxious, shocked, they don’t know what to do. If they find me in the room, I always explain or refer them to the doctor’’. Nurse 23 said:

Intensive care nurses’ experiences of end-of-life care ‘‘The relatives won’t understand, the nurse has to be there to orient them about the patient’s surroundings, monitors, lines and how it works’’. Although the nurses’ presence was valued, the participants reported that frequently, some nurses especially the junior nurses would leave the family alone in the room intentionally because they are not prepared to handle the family. Nurse 14 explained: ‘‘. . .sometimes when relatives come in, the nurses, especially juniors disappear. They don’t want to be asked questions. Some say this family is very difficult, they like asking questions. They are not yet competent but experienced nurses will be able to stand with the family’’. There were divided opinions concerning nurses staying with the families when the patient’s death neared. Nurse 4 said: ‘‘there is no time; I cannot be with them because I have to get ready for an admission coming on this bed’’. Despite of their inability to stay with the family for a longer period of time, some participants advocated remaining with family members: ‘‘I stay if they are comfortable, I ask them, do you want me to stay with you or should I leave you alone? Sometimes families want quiet moments alone with the patient. Others want to do their last respect and may need privacy’’ (nurse 11). Participants had observed that families were not prepared in advance concerning the patients’ prognosis and progress. Preparing the family gradually in terms of information giving was a support that nurses and more so doctors needed to ensure. Nurse 21 said: ‘‘I have realized that the family is not prepared days before. They will just be called on that particular day when the decision has been made and the patient is going to die. They need to be told from day one by the doctor. Explain every day about the prognosis. Just to prepare them for that. Even the language must be understood’’. It was noted that nurses do not attend family meetings. Nurse 10 admitted, ‘‘we rarely attend’’. A suggestion was that ‘‘even nurses need to come in during the explanation’’ (nurse 12). The attendance could ensure nurses’ contributions, enhance their awareness of information given to the family and enable them to easily respond to any concerns raised by the families thereafter in lay terms without contradictions. Support for nurses Participants asserted that the experience of caring for the patients and families at end-of-life is difficult and challenging. They mentioned that these challenges could be reduced if they received various forms of support during the caring process and after the patient’s death. Support is, however, not available. Nurse 18 said ‘‘we need counselling or debriefing sessions, just to talk with someone’’ because ‘‘the things we get exposed to on a daily basis are deep but we survive, we get desensitized, nothing is done to us’’ (nurse 2).

35 Participants also mentioned that team work, as a means of support, is lacking in most of the units. There was a need to assist each other and do away with discrimination which was found to be common in the units among the nurses. Nurse 20 explained: ‘‘Others will work because they have their team/favourites, when their favourites are not on duty, they switch off. Favouritism must be resolved so that we can support each other in caring and ensure quality care because you won’t be struggling or fighting alone, others will boost you when you need them’’. As was mentioned by nurse 13 ‘‘most of us (nurses) don’t have substantial experience of caring for the dying patients and how to deal with families’’. Training was thus suggested as the other form of support on not only how to help patients and families but also on how nurses can cope with the challenges in the caring process, especially for the junior nurses who find the whole process stressful. Nurse 20 said: ‘‘. . .offer training on how we can handle families and patients. With us seniors we are much better but junior nurses get a lot of stress and trauma. They need somebody to support them’’. Although some patients die within a few hours of the move to palliative care, in some instances a patient could live for days. It was suggested that ensuring that nurses cared for different patients rather than one patient exclusively would prevent their being emotionally drained. Nurse 11 expressed: ‘‘. . .they can be gasping even for two days. If yesterday you looked after this patient and you are emotionally drained, let somebody take over and see how they cope. If you are not coping, they should change you to another patient because other people we are so weak emotionally we just break down’’. There was a need to consider nurses who have been recently bereaved when delegating duties. As suggested, these nurses should not immediately be allocated to care for dying patients. Nurse 22 said: ‘‘Consider which patient to allocate to the bereaved, nursing such like patient affects emotionally. We differ, others will forget all about it and carry on while it will be hard and a constant reminder for others. You see them going to the toilet several times and they come out wiping their eyes (crying), red eyes’’. Due to increased patients’ severity of illness and high demand for ICU beds, nurse 14 reported that in most instances, ‘‘Seeing the patient going down until the end is the most draining part but you are expected to admit another patient as soon as possible and just carry on as if nothing has happened’’. It was the participants’ wish to be given some time to adjust after death and before the next admission. Death was considered as a source of psychological distress and admitting yet another patient immediately without being given time to adjust was particularly disturbing. Nurse 21 said: ‘‘. . .after it has happened (death), there is an admission. They need this bed for another patient and you find

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L.C. Kisorio, G.C. Langley you are not alert. Your brain goes back, you slow down, because you are still disturbed, you were not given time to adjust’’.

Discussion The discussions highlighted a number of important issues that nurses come across while caring for the dying patients and their families. These ranged from difficulties encountered during the caring process to ways which can be used to offer support to the patients, families and the nurses. Literature indicates that end-of-life care is challenging and a major source of stress for ICU nurses (Iglesias et al., 2013; Peters et al., 2013). In the current study, participants found it challenging psychologically and emotionally when they had to care for dying younger patients or those that they had bonded with. Similar findings have been reported (Espinosa et al., 2010; Vouzavali et al., 2011). While communication is a cornerstone and a fundamental skill in nursing practice (Malloy et al., 2010), participants in our study were hesitant as to whether to talk to family about the patient’s poor prognosis as was evident in a study by Gaeeni et al. (2014). Despite the availability of communication strategies for approaching difficult conversations with families (Shannon et al., 2011), nurses in our study still struggle dealing with difficult conversations and most would prefer to refer the family to the doctor for any explanations needed. Similar to previous findings (Iglesias et al., 2013), dealing with families in denial was mentioned to be a challenge in the current study. Some families wanted to hear what they wanted to hear, a behaviour reported by Schenker et al. (2013). Despite their direct involvement in the care of the patients at end-of-life, our participants stated that they are not often involved in the decision making process, a similar finding as that of Langley et al. (2013). The desire for nurses to be involved in the whole process of end-of-life decisions in our study agrees with those in a study by Albers et al. (2014). Consistent with the reports from a few of the most experienced participants in our study, it is documented that senior experienced nurses are recognised by the consultants and are likely to be involved in end-of-life decisions (Coombs et al., 2012). The other significant finding was the need to support patients in ways that could ensure their comfort in the dying process. Reported was religious and spiritual support, a vital aspect of holistic nursing care which has been associated with a peaceful death (Petersen, 2014). In line with our findings is the documentation that religious support should be offered (Labram and Hughes, 2010). Even though spiritual support is frequently cited as part of holistic nursing care, this was not always possible in our study, a finding that could be associated with lack of spiritual care training (Balboni et al., 2013). In most cases, our participants preferred to ask families to bring their own spiritual leaders or organise outside ministers of religion to offer spiritual care. Nurses reported that for comfort measures, they do perform basic nursing care to dying patients; in the same manner as that given to all patients who are deemed likely to survive. Related findings have been reported by Ranse

et al. (2012) where nursing interventions ensured that the patient was kept as comfortable as possible. Family presence and participation in direct patient care was regarded as a form of patient support. Williams et al. (2012) found, as in the current study, that family presence was considered as not only a way to ensure that the patient is not alone during the dying process but also a way of gradually preparing the family for the imminent loss. Despite the fact that intimate involvement in the terminal care may allow the family to come in terms with the patient’s impending death and can provide solace, similar findings to our study have revealed that unless relatives express an interest, very few are asked whether they would like to participate in direct patient care (Labram and Hughes, 2010). In spite of the importance of a nurse’s presence with a dying patient (Tornøe et al., 2014), this was rarely practiced in our study because of lack of time, a factor that has been cited as preventing the ICU nurse from providing quality end-of-life care (Harris et al., 2014). Congruent to our findings is that noise is a common problem in ICUs (Tegnestedt et al., 2013) and has, as well been identified as a barrier to providing quality end-of-life care (Zomorodi and Lynn, 2010). Our participants acknowledged the need for support to the families who had dying patients. Because nurses are mostly busy, the need to have specialised support persons for the families was raised, a finding supported by Bloomer et al. (2010). In our multi-cultural society, participants mentioned that patients’/families’ wishes regarding cultural or religious practices and rituals should be respected, a finding that concurs with that of Langley et al. (2013). The importance of open family visitation at end-of-life has been documented (Iglesias et al., 2013). In agreement with our findings, participants in a previous study felt that the family of the patient should visit any time of the day without restrictions (Langley et al., 2013). Families experience nursing presence as a comforting embrace that sustains them before, during and after the patient’s death (Williams et al., 2012). In spite of this, most of our participants reported that it was not always possible to accompany the family because of other duties that needed to be accomplished. Nevertheless, a few created some time to stay with the family, as advocated by Ranse et al. (2012). Of concern is that other nurses, especially the junior nurses were reported to leave the families alone in the patient’s room, a finding that could be associated with their fear of death, inability to cope and negative attitudes towards end-of-life care (Peters et al., 2013). This is an area that could benefit from further research in the clinical practice. Similar to the current findings, inadequate family preparation has been documented (Zomorodi and Lynn, 2010). While avoiding medical jargon (Shannon et al., 2011), family meetings with the multi-professional team should begin soon after ICU admission and repeated frequently as dictated by the patient’s condition (Gaeeni et al., 2014). In accordance with the study by Lind et al. (2012), our participants stressed the importance of nurses’ attendance during family meetings however, this was not commonly practiced. To overcome the difficulties associated with end-oflife care, our participants mentioned that they need to be supported. They mentioned that debriefing sessions

Intensive care nurses’ experiences of end-of-life care during/after end-of-life care could be helpful, a finding supported by Pattison (2011). Even though teamwork between ICU staff members is recognised as an integral component of optimal end-of-life care (Festic et al., 2010), this was lacking in some of our participating units. Lack of collaboration in palliative care has been associated with several risks including burn out (Foxman, 2013). The participants suggested that nurses do not have adequate experience in end-of-life care and that some nurses, especially junior nurses, may find it difficult to deal with psychological needs of families. There is evidence that little end-of-life content is included in most nursing education programmes (Harris et al., 2014) therefore, staff working in the ICU often feel inadequately prepared to care for dying patients and their families (Cavaye and Watts, 2014). To improve end-of-life care and the ability of nurses to cope with death and dying, there is a need to integrate end-oflife education at undergraduate and post-registration levels (Peters et al., 2013). Related to our study, participants in a study by Espinosa et al. (2010) reported that there may be times when a nurse will not be able to provide terminal care because of situations in their personal lives. Should this be the case, special consideration should be afforded to nurses to allow them to opt out of caring for the terminal patients. Moreover, our participants raised the need of maintaining shift changes as a source of providing emotional respite. Ryan and Seymour (2013) state that ICU nursing is associated with emotional labour because nurses look after dying patients and their families on a regular basis which can result in experiencing deep emotional reactions as well as grief. Furthermore, in between a patient’s death and a new admission, our participants stated that they needed time to adjust. Comparable findings have been documented (Fridh et al., 2009). It is clear that when nurses do not have the opportunity to resolve their grief or articulate their feelings, the grief reactions accumulate and this could result in stress and burnout (Ryan and Seymour, 2013). One of the limitations is that this study was conducted in adult ICUs from three hospitals in one province hence these findings can only be limited to similar contexts. Further research is needed in other sectors such as private and paediatric ICUs. Of concern was the report that nurses may lack expertise on how to deal with patients and families hence the need for continuous end-of-life education at the clinical areas. Development of practice guidelines on end-of-life care may help to curb some of the challenges experienced by nurses in the caring process.

Conclusion It is evident that end-of-life care can be challenging to ICU nurses. Nevertheless, this study has highlighted important issues that could be incorporated during end-of-life care for improved caring process. Nurse participants raised the need for patients to continue receiving interventions that promote comfort until death. These, ranged from meeting the patients’ physical, social, emotional and spiritual needs. Apart from their best interest in the care of the dying patients, nurses’ thoughtful attention to families was also emphasised. It is apparent that for nurses to cope and

37 be able to render the best possible end-of-life care to the patients and their families, they too need to be nurtured. Nurses’ voices of the need for support during this process suggest the necessity to reinforce or institute relevant forms of support in the intensive care units.

Conflict of interest The authors have no conflict of interest to declare.

Acknowledgement We would like to thank the ICU nurses who participated in this study.

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