Research
Swedish nursing students’ reasoning about emotionally demanding issues in caring for dying patients
Abstract
Aim: To describe nursing students’ reasoning about emotionally demanding questions concerning the care of dying patients. Methods: The Frommelt Attitude Toward Care of the Dying (FATCOD) Scale was completed by students at the beginning of their education, and there was great variation in the responses to five items. At a follow-up measurement in the second year, an open-ended question, ‘How did you reason when completing this question?’, was added to each of the these five items. Qualitative content analysis was used to analyse the responses. Results: Of 140 students who completed the FATCOD, 111 provided free-text responses. The analysis of these responses revealed three themes: death perceptions, the students’ understanding of their current situation, and the nurse’s responsibility. Conclusion: This study provides useful information on students’ reasoning about emotionally demanding questions relating to the care of dying patients. Such knowledge is valuable in helping students to overcome their fear and fulfil their expectations concerning their future proficiency. Key words: Death l End-of-life care l Nursing education l Nursing students l Perceptions
C
For a full list of author affiliations, see Box 1. Correspondence to: Susann Strang [email protected]
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aring for dying patients can be very rewarding (Charalambous and Kaite, 2013) and educational for nursing students, but it can also be emotionally demanding (Parry, 2011) and frustrating, especially if the student is unprepared to meet the dying patients’ needs (Sadala and da Silva, 2009). A study exploring nursing students’ first encounter with a dying patient showed that the students were emotionally influenced by the situation, lacked skills for the situation, were influenced by their mentor’s attitude, and lacked someone to talk to about the situation (Parry, 2011). Anxiety about caring for dying patients was provoked among students by the physical suffering of patients, especially younger patients, and sudden death was more difficult to encounter than older patients and expected death. Anxiety was also triggered by the caring role, such as taking care of the dead body, knowing what to do or say, and handling the fact that the relationship with the
patient was severed by death. Nurses often cope by suppressing their personal feelings and distancing themselves from their patients, which leads to a ‘conspiracy of silence’ about how deeply they are affected by caring for dying patients (Cooper and Barnett, 2005). Even qualified oncology nurses have acknowledged that they were not adequately prepared to care for dying patients (White and Coyne, 2011). This implies that students need more preparation for end-of-life care. Nurses in most settings will meet patients at the end of life and need to be prepared for this; furthermore, nurses acknowledge that it is their responsibility to care for patients at the end of life (Browall et al, 2010). Nurses sometimes try to develop trustful and communicative relationships to be able to meet patients’ needs in palliative care and to provide comfort and knowledge (Mok and Chiu, 2004; Johnston and Smith, 2006). However, without such preparation, they may try to withdraw from the patient and avoid contact in an attempt to protect themselves emotionally (Mallory, 2003; Mutto et al, 2010). Sweden is one of the most secularised countries in the world, and previous values are changing (Hornborg, 2012), at least with regard to active participation in church activities. Religion is separated from the traditional public domain and it has mainly been replaced by individual rites, such as seeking ‘inner potential or finding your inner self’ (Hornborg, 2012:403). Kübler-Ross stated in 1969 that modern society suffers from fear and denial of death, and in Sweden death is institutionalised and unfamiliar (Walter, 1994). It is very uncommon in Sweden for place of death to be anywhere other than a hospital or residential care facility (Jakobsson et al, 2006). Fear among nursing students of encountering death and dying might affect their readiness and confidence to deal with these issues. As they will probably never have met a dying person before and will probably have no traditional rites or beliefs to lean on, nursing students have to create
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Susann Strang, Ingrid Bergh, Kristina Ek, Kina Hammarlund, Charlotte Prahl, Lars Westin, Jane Österlind, Ingela Henoch
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their own readiness to act. Some efforts have been made to prepare nursing students for endof-life care. When undergraduate nursing students were given an education with self-reflection in palliative care, their attitudes toward the care of dying patients improved (Mallory, 2003). Furthermore, after an educational programme, US nursing students developed significantly more positive attitudes toward the care of dying patients (Frommelt, 1991).
Aim To prepare students to care for dying patients, it is important to explore how students reason about death and their encounters with dying patients. Therefore, the aim of the present study was to describe nursing students’ reasoning about emotionally demanding questions concerning the care of dying patients.
Methods This study was part of a longitudinal study exploring the development of nursing students’ attitudes toward the care of dying patients at three time points during their education: at the beginning of their education, at the beginning of their second year of education, and at the end of their education. The setting was three universities in Sweden, located in three cities of different sizes and locations. The data for the present study was collected at the introductory lecture at the beginning of the second year. By this point in their nursing education, the students at all three universities have received theoretical education about basic nursing concepts, e.g. anatomy, physiology, and pathophysiology, as well as minor clinical education with a focus on basic patient care. During the 3rd year, the students will receive a short course (1–2 weeks) of lectures and seminars on palliative care issues.
Participants
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In Sweden, nursing students must complete a 3-year bachelor of science programme in nursing before they can attain the status of registered nurses (RNs) from the National Board of Health and Welfare. All students starting their nursing education at the three participating universities during the autumn of 2011 were invited to take part in the study.
Procedure and data collection In the longitudinal study, attitudes toward the care of dying patients were measured using the Frommelt Attitude Toward Care of the Dying (FATCOD) Scale (Frommelt, 1991; Henoch et al, 2013). This is a 30-item questionnaire in which
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Box 1. Author affiliations Susann Strang is Associate Professor, Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Box 457, SE-405 30 Göteborg, Sweden, and Angered Local Hospital, Sweden; Ingrid Bergh is Professor, Kristina Ek is Senior Lecturer, Kina Hammarlund is Senior Lecturer, and Lars Westin is Senior Lecturer, University of Skövde, School of Life Sciences, Sweden; Charlotte Prahl is Senior Lecturer and Jane Österlind is Senior Lecturer, Ersta Sköndal University College and Ersta Hospital, Palliative Research Centre, Stockholm, Sweden, and Department of Health Care Sciences, Ersta Sköndal University College, Sweden; Ingela Henoch is Associate Professor, Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Sweden, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Sweden
two-thirds of the questions concern attitudes toward caring for a dying person and one-third concern nurses’ attitudes toward the dying patient’s family. Items are rated on a five-point Likert scale in which 1=disagree, 3=neither/nor, and 5=agree. The published English version of the FATCOD has been translated into Swedish using recommended procedures for questionnaire translation (White and Elander, 1992; Maneesriwongul and Dixon, 2004). The first measurement was conducted at the beginning of the education, and a preliminary analysis of the items showed that there was great variation in the responses to five of the items (Table 1). Therefore, the data collection of the part of the study reported here was performed at the second measurement at the beginning of the second year: an open-ended question was added to each of the five items with great variation. The open-ended question was worded, ‘How did you reason when completing this question?’ This paper presents the analysis of the responses to this open-ended question.
Analysis Qualitative content analysis was used to analyse the students’ responses to the open-ended question (Graneheim and Lundman, 2004; Krippendorff, 2004). The students’ answers were read repeatedly to get a sense of the whole, and then the texts were reread word-by-word to derive similarities and differences and the data was sorted into main categories and subcategories. The analysis was carried out by three of the authors (IH, IB, and SS) and discussed among these authors until consensus was reached. The paper co-authors focused on validation of the results.
Ethical considerations The study was approved by the Regional Ethics Committee of the University of Gothenburg (Dnr 426-08) and the students were given verbal and written information and provided informed
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Table 1. Mean (SD) of the FATCOD items included in the study in the first and second year 1st-year scores
2nd-year scores
Items
Mean (SD), median, range
Mean (SD), median, range
P-value
3. I would be uncomfortable talking about impending death with the dying person.
2.76 (1.3), 3, 1–5
2.93 (1.2), 3, 1–5
0.153
8. I would be upset when the dying person I was caring for gave up hope of getting better.
2.26 (1.2), 2, 1–5
2.14 (1.1), 2, 1–5
0.227
11. When a patient asks, ‘Nurse, am I dying?’ I think it is best to change the subject to something cheerful.
2.19 (1.2), 2, 1–5
2.26 (1.2), 2, 1–5
0.490
13. I would hope the person I'm caring for dies when I am not present.
2.24 (1.2), 2, 1–5
2.26 (1.1), 2, 1–5
0.890
26. I would be uncomfortable if I entered the room of a terminally ill person and found him/her crying.
2.39 (1.2), 2, 1–5
2.36 (1.3), 2, 1–5
0.803
Range of responses is 1 to 5; 1=totally disagree and 5=totally agree. FATCOD, Frommelt Attitude Toward Care of the Dying Scale; SD standard deviation
Results Of 245 students invited to take part in the longitudinal study, 222 chose to participate in the first year (189 women and 33 men). There were 84, 70, and 68 students from the three universities. The mean age of the students was 24.7 years (standard deviation 6.8), with a median of 22 years (range 18–51). In the second year, 140 of the students completed the questionnaire. The variation in the students’ responses to the five selected FATCOD items was consistent at the second measurement (Table 1). Open-ended responses to any of the five instances of the open-ended question were made by 111 students. When the responses to the open-ended question concerning the students’ reasoning about emotionally demanding questions were analysed, three themes emerged that were fairly homogenous across the five items: death perceptions, the students’ understanding of their current situation, and the students’ expectations of their future proficiency. The subthemes varied more between the questions but could all be grouped
Table 2.Themes and subthemes of the students’ reasoning about emotionally demanding questions concerning the care of dying patients Themes
Subthemes
Death perceptions
Death is natural, death is frightening
The students’ understanding of their current situation
Being comfortable, being aware of their own limitations, experiencing identification, avoiding responsibility
The students’ expectations of their future proficiency
Having the courage to be present, having the skills to listen and support
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into the themes. The themes and subthemes are presented in Table 2.
Death perceptions Although many of the students considered death a natural part of life, there was a huge span of descriptions of the nature of death, ranging from death being a natural part of life to death being incomprehensible and terrifying. Death is natural Students who had previous experience of caring for dying people said they felt that it was natural to think and talk about death, even if these issues seemed remote. Death was reported as a learning opportunity and something one cannot escape. ‘There is something inevitable: death, then, for all of us at some point in life.’ ‘It may be valuable to see the person’s last minutes alive, both emotionally and as a learning opportunity. You bring this experience to the next dying patient you care for.’
The students said it was difficult to know how others think of death, because death could sometimes even be desired. ‘It’s hard to explain what death is … really. It is an unpleasant thing in some cases, though there may be people who long for death.’
There were also students who considered death a natural part of life, as they had religious answers to the patients’ questions: ‘I will say to the patient that it is God who decides for humans when to die. Death is a part of human life, and you should accept it. Perhaps it is difficult to handle this, but everyone is dying.’
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consent. Issues around death could raise uncomfortable feelings for the students, but as this was a part of their future proficiency it was considered not unethical to confront them with these questions.
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Death is frightening Death evoked many emotions, such as feeling helpless, uncertain and inadequate. The thought of caring for dying people evoked feelings of being very unprepared. Facing death was reported as being unpleasant because words, experience, and knowledge were lacking. Such situations were considered demanding, uncomfortable, and even terrifying. Death was considered by some the worst thing that could happen. ‘It scares me, and I was completely destroyed during practice when the patient died, even though I knew it would be so, and did not attend the last hour.’
The whole situation, including the dead body, was reported by some as being scary. ‘Because I think it’s so scary to take care of the cold body. Sitting vigil and being there as long as the patient breathes, I can handle, but then when they die, I think that it’s really hard.’
Some were emotionally engaged and felt pity and grief and were overwhelmed by the situation. There were even feelings of ‘survivors’ guilt’.
The students’ understanding of their current situation Being comfortable Some students, especially those who had previous experience of caring for dying patients, said they felt comfortable and considered it natural to talk about death, even if it seemed remote to other students. They felt that conversations with dying patients were not scary and that issues around death were worthwhile, interesting, and important. They also felt that the more they communicated, the more comfortable they would be. Some students felt that their religious faith made them feel secure in encountering dying patients.
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‘I do not feel uncomfortable when it comes to spending time with a dying person. But I am not sure how I will talk, what questions I will get. I do not have much experience of having pastoral conversations with dying persons.’ ‘Then I have a deep-rooted Christian faith and many times have talked about death, and what happens afterwards is not a subject that is uncomfortable.’
Being aware of their own limitations Most of the students were aware of their own limitations, owing to their lack of knowledge and
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experience of caring for dying people. The students wanted to have ‘deep conversations’ but did not know what to say or how to act. These unfamiliar situations made some of the students feel awkward and stressed, but many hoped that it would become easier with more experience. ‘I would constantly think, “Did I say something inappropriate?” Does the patient suffer? How am I supposed to able to provide enough help?”’
Experiencing identification How the students characterised the death of a patient could sometimes be affected by the patient’s age, in that the students assumed that it is easier for an older person to die. Sometimes the students could easily identify with patients, especially young patients, and be very sad when they realised that a patient was dying. This identification could also hinder the students in supporting the patients. Some students also felt that it could be difficult to comfort an unknown person, while others thought it could be inconvenient if they knew the patient.
❛Fear of encountering death and dying among nursing students might affect their readiness and confidence to deal with these issues.❜
‘It depends on the situation, whether it is a person who is young and has his whole life ahead of him or a 95-year-old on dialysis.’ ‘I guess I’m not really comfortable with death and probably need to learn to “go out of myself” to understand that it is not mine, my mother’s, my child’s death.’
There was concern that the patient’s feelings of severe anxiety would affect the students, who could become emotionally involved and feel sad and uncomfortable, especially in the beginning of their careers. These feelings could influence their ability to support the patient. Avoiding responsibility Some students said they tended to change the subject when patients them asked questions about death or they were unable to give honest answers to the patients’ questions; they wanted to refer to someone else, i.e. a doctor, social worker, or priest. ‘[When the patient asks, “Nurse, am I dying?”] it is a very difficult situation, and many times, I would not answer it but talk about positive things and refer to the doctor, but when you know [that the patient is dying] it’s hard to lie and deny the truth.’
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The students’ expectations of their future proficiency Many students said they felt an obligation to be strong in front of the patients. Caring for dying patients seemed to be very difficult, but something that they had to manage. They referred to nurses’ responsibilities, felt obliged to support the patients, and hoped it would get easier as time went by. Although the students reasoned that talking with dying patients could be very demanding and that it was difficult to talk about death, it was still regarded as part of the nurse’s role. The students stated that it is their responsibility to care, to give support, and to comfort. Being a good listener is an unavoidable task, although in conversation it is difficult and emotionally demanding to find the right words. These demands sometimes urged the students to refer to someone else. Having the courage to be present Some students hoped that they would someday be brave enough to take care of a dying patient. ‘It is important to be able to handle a situation such as that; it’s your job as RNs and it is an obvious task.’
Death and dying are reminders of the shortness of life. The patient’s perception and response is crucial for how the nurse experiences the conversations. It is difficult to support people in severe crisis, but it is still necessary. ‘My role as a caregiver is to support patients in the situation they are in. My values and beliefs have to stand aside; the patient is the priority. What matters is that the caregiver does not give up but offers peace or strength as much as possible to the patient.’
The students reported feeling it is important that a patient should not die alone; however, they felt it could be uncomfortable to be near a dying person owing to their lack of experience. Some students wanted to be present when a patient they had cared for was dying, to know that all went well and that good care was given. The students reported that what it would be like to encounter death anxiety in a patient depended on whether the patient was prepared to die. It was perceived as more difficult if the patient was unprepared for death. The students reported an obligation to be present at the moment of death and understood this to be part of the duty of caring for the patient.
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‘As a nurse, you have to be strong. Maybe it will be sad to see a person that you took care of die in front of your eyes. Maybe you become emotionally sad. But I’ll be comforting for the dying patient and the patient’s family. But then I have to be strong as well.’
Having the skills to listen and support Some students considered talking to dying patients a natural part of the nurse’s role. They said it could be very demanding and difficult to talk about death, but that it is nonetheless an imperative task. The students wanted to be able to communicate about essential issues. Some felt that there was nothing scary about talking about death; instead, it could be interesting and important. It was said to be vital that the patient’s perception guide the discussions. ‘I am open and responsive to a patient’s wish to talk about his death. I want to be able to listen and even help.’
The students reasoned about the importance of being responsive and sensitive to the patients. The responsiveness to the patients concerned respecting the patient and being vigilant concerning their wish to talk, being honest, and recognising that the patient has the right to know the truth about his or her situation. The students also reasoned that it was important to preserve the patient’s hope. ‘It would be quite natural to lose hope sometimes when you’re dying. The main thing for me would have been to make the patient feel as good as possible and try to bring back hope.’
Discussion The main finding of this study was that there is large variation in Swedish nursing students’ reasoning about caring for dying patients. There was also great variety in how the students reasoned about their understanding of their current situation and the ideal image of a skilled nurse’s competence. When the students encountered questions about death and dying, they described their thoughts as hovering between duty, demands, their own insufficiency and lack of experience, and the fear of death. Although they had a cognitive perception about ideal nursing close to death, the vision of death and dying scared them. The results from this study are similar to those of Smith-Stoner et al (2011) concerning students wanting to care for patients with respect, lacking experience, and seeing death as a natural part of
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❛Although many of the students considered death a natural part of life, there was a huge span of descriptions of the nature of death ...❜
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life. However, the students in the present study also acknowledged that caring for dying patients is the nurse’s responsibility and hoped that they could fulfil this responsibility. According to Charalambous and Kaite (2013), nursing students perceived the nurse’s responsibility in palliative care to encompass the provision of emotional and physical comfort as well as the alleviation of symptoms. In nursing education, this sense of responsibility could be used to motivate students to be involved in the care of dying patients. Death was seen as natural and inevitable, but the students also expressed that facing death was difficult and emotionally demanding, as acknowledged by others (Cooper and Barnett, 2005; Sadala and da Silva, 2009; Huang et al, 2010). When the dying patient was old, the students were able to see death as a natural part of life, which was not the case when the patient was their own age. This way of rationalising death was also seen in other studies (Cooper and Barnett, 2005; Smith-Stoner et al, 2011). Although it is natural to die in old age, there is a risk that nurses will not acknowledge that dying can be frightening, unknown, and challenging, even for an old person. Such reasoning could lead old people to not receive appropriate end-oflife care. Some students had experience of caring for dying patients and reasoned in a more confident way when a patient was dying than students without this experience, who tended to be more frightened. Similar findings have been reported previously in studies where nursing students were interviewed about their experiences caring for dying patients (Huang et al, 2010; Smith-Stoner et al, 2011). In nursing education, it is important to find these students who are scared and help them to become more comfortable in the care of dying patients. For a nurse, it is almost inevitable to meet dying patients; therefore, these students need sensitive guidance in these matters. One way of achieving this is for the students to share their personal feelings with experienced nurses who can affirm their concerns (Cooper and Barnett, 2005; Huang et al, 2010). Cooper and Barnett (2005) suggest it is important to recognise that it is natural for caring for dying patients to provoke anxiety and that such feelings are also experienced by RNs. The study also shows that students felt a strong inner demand and duty to be brave and supportive. This has also been found in other studies; students would do everything they could physically and mentally to comfort, show consideration to, and encourage the dying patient, to
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promote a sense of security and calm (Smith-Stoner et al, 2011). This implies that nursing students need to overcome their fear and devote themselves to this during the dying period. It has been suggested that one way to provide students with this competence is to use supervised reflection in caring science throughout nursing education (Mallory, 2003; Johansson et al, 2006; Arvidsson et al, 2008; Berglund et al, 2012). Other ways could be to use simulated situations (Gillan et al, 2013) or training by drama (Ekebergh et al, 2004). Both supervised reflection and drama help students to dare to approach demanding situations in safe surroundings, with support and guidance from experienced teachers and fellow students.
Limitations The sample included students from only three universities, and the respondents were predominantly female. Therefore, the data should be interpreted with caution. Written responses to open-ended questions present no opportunity to develop the answers through follow-up questions. Such an opportunity could have been valuable as the topic is sensitive and complex and difficult to express briefly in written text.
❛Both supervised reflection and drama help students to dare to approach demanding situations in safe surroundings, with support and guidance from experienced teachers and fellow students.❜
Future research Future research is needed to explore whether the students are well prepared for their future proficiency concerning end-of-life care after the limited 1–2 weeks of education they receive in their third year. Such research could be conducted before the students’ graduation by posing questions similar to those in the present study.
Conclusion This study provides useful information concerning students’ reasoning about emotionally demanding questions in the care of dying patients. Such knowledge is valuable for teachers to help students to overcome their fears by means of supervised reflection, simulated situations, or drama. This might support scared students who are avoiding lonely, dying patients, and improve their ability to provide support. They might thereby become more confident to fulfil their expectations concerning their future proficiency. I● JPN Funding Funding for this project has been gratefully received from the Gunvor & Josef Anérs Fund and the Assar Gabrielsson’s Fund. Declaration of interests The authors have no conflicts of interest to declare.
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Arvidsson B, Skärsäter I, Oijervall J, Fridlund B (2008) Process-oriented group supervision implemented during nursing education: nurses’ conceptions 1 year after their nursing degree. J Nurs Manag 16(7): 868–75. doi: 10.1111/j.1365-2834.2008.00925.x Berglund M, Sjögren R, Ekebergh M (2012) Reflect and learn together—when two supervisors interact in the learning support process of nurse education. J Nurs Manag 20(2): 152–8. doi: 10.1111/j.1365-2834.2011.01368.x Browall M, Melin-Johansson C, Strang S, Danielson E, Henoch I (2010) Health care staff’s opinions about existential issues among patients with cancer. Palliat Support Care 8(1): 59–68. doi: 10.1017/S147895150999071X Charalambous A, Kaite C (2013) Undergraduate nursing students caring for cancer patients: hermeneutic phenomenological insights of their experiences. BMC Health Serv Res 13: 63. doi: 10.1186/1472-6963-13-63 Cooper J, Barnett M (2005) Aspects of caring for dying patients which cause anxiety to first year student nurses. Int J Palliat Nurs 11(8): 423–30 Ekebergh M, Lepp M, Dahlberg K (2004) Reflective learning with drama in nursing education—a Swedish attempt to overcome the theory praxis gap. Nurse Educ Today 24(8): 622-8. doi: 10.1016/j.nedt.2004.07.011 Frommelt KH (1991) The effects of death education on nurses’ attitudes toward caring for terminally ill persons and their families. Am J Hosp Palliat Care 8(5): 37–43 Gillan PC, Jeong S, van der Riet PJ (2013) End of life care simulation: a review of the literature. Nurse Educ Today [epub ahead of print] doi: 10.1016/j.nedt.2013.10.005 Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24(2): 105–12 Henoch I, Browall M, Melin-Johansson C et al (2013) The Swedish version of the Frommelt Attitude Toward Care of the Dying scale: aspects of validity and factors influencing nurses’ and nursing students’ attitudes. Cancer Nurs 37(1): E1–11. doi: 10.1097/ NCC.0b013e318279106b Hornborg AC (2012) Designing rites to re-enchant secularized society: new varieties of spiritualized therapy in contemporary Sweden. J Relig Health 51(2): 402–18. doi: 10.1007/s10943-010-9356-5 Huang XY, Chang JY, Sun FK, Ma WF (2010) Nursing students’ experiences of their first encounter with death
during clinical practice in Taiwan. J Clin Nurs 19(15-16): 2280–90. doi: 10.1111/j.1365-2702.2009.03090.x Jakobsson E, Johnsson T, Persson LO, Gaston-Johansson F (2006) End-of-life in a Swedish population: demographics, social conditions and characteristics of places of death. Scand J Caring Sci 20(1): 10–7. doi: 10.1111/j.1471-6712.2006.00374.x Johansson I, Holm AK, Lindqvist I, Severinsson E (2006) The value of caring in nursing supervision. J Nurs Manag 14(8): 644–51 Johnston B, Smith LN (2006) Nurses’ and patients’ perceptions of expert palliative nursing care. J Adv Nurs 54(6): 700–9 Krippendorff K (2004) Content Analysis. An Introduction to its Methodology. Sage, London Kübler-Ross E (1969) On Death and Dying. MacMillan, New York: Mallory JL (2003) The impact of a palliative care educational component on attitudes toward care of the dying in undergraduate nursing students. J Prof Nurs 19(5): 305–12 Maneesriwongul W, Dixon JK (2004) Instrument translation process: a methods review. J Adv Nurs 48(2): 175–86 Mok E, Chiu PC (2004) Nurse-patient relationships in palliative care. J Adv Nurs 48(5): 475–83 Mutto EM, Errázquin A, Rabhansl MM, Villar MJ (2010) Nursing education: the experience, attitudes, and impact of caring for dying patients by undergraduate Argentinian nursing students. J Palliat Med 13(12): 1445–50. doi: 10.1089/jpm.2010.0301 Parry M (2011) Student nurses’ experience of their first death in clinical practice. Int J Palliat Nurs 17(9): 446–51 Sadala ML, da Silva FM (2009) [Taking care of terminal patients: nursing students’ perspective.] [In Portuguese.] Rev Esc Enferm USP 43(2): 287–94 Smith-Stoner M, Hall-Lord ML, Hedelin B, Petzäll K (2011) Nursing students’ concerns about end of life in California, Norway, and Sweden. Int J Palliat Nurs 17(6): 271–7 Walter T (1994) The Revival of Death. Routledge, London White KR, Coyne PJ (2011) Nurses’ perceptions of educational gaps in delivering end-of-life care. Oncol Nurs Forum 38(6): 711–7 White M, Elander G (1992) Translation of an instrument. The US-Nordic Family Dynamics Nursing Research Project. Scand J Caring Sci 6(3): 161–4
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Swedish nursing students’ reasoning about emotionally demanding issues in caring for dying patients
Abstract
Aim: To describe nursing students’ reasoning about emotionally demanding questions concerning the care of dying patients. Methods: The Frommelt Attitude Toward Care of the Dying (FATCOD) Scale was completed by students at the beginning of their education, and there was great variation in the responses to five items. At a follow-up measurement in the second year, an open-ended question, ‘How did you reason when completing this question?’, was added to each of the these five items. Qualitative content analysis was used to analyse the responses. Results: Of 140 students who completed the FATCOD, 111 provided free-text responses. The analysis of these responses revealed three themes: death perceptions, the students’ understanding of their current situation, and the nurse’s responsibility. Conclusion: This study provides useful information on students’ reasoning about emotionally demanding questions relating to the care of dying patients. Such knowledge is valuable in helping students to overcome their fear and fulfil their expectations concerning their future proficiency. Key words: Death l End-of-life care l Nursing education l Nursing students l Perceptions
C
For a full list of author affiliations, see Box 1. Correspondence to: Susann Strang [email protected]
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aring for dying patients can be very rewarding (Charalambous and Kaite, 2013) and educational for nursing students, but it can also be emotionally demanding (Parry, 2011) and frustrating, especially if the student is unprepared to meet the dying patients’ needs (Sadala and da Silva, 2009). A study exploring nursing students’ first encounter with a dying patient showed that the students were emotionally influenced by the situation, lacked skills for the situation, were influenced by their mentor’s attitude, and lacked someone to talk to about the situation (Parry, 2011). Anxiety about caring for dying patients was provoked among students by the physical suffering of patients, especially younger patients, and sudden death was more difficult to encounter than older patients and expected death. Anxiety was also triggered by the caring role, such as taking care of the dead body, knowing what to do or say, and handling the fact that the relationship with the
patient was severed by death. Nurses often cope by suppressing their personal feelings and distancing themselves from their patients, which leads to a ‘conspiracy of silence’ about how deeply they are affected by caring for dying patients (Cooper and Barnett, 2005). Even qualified oncology nurses have acknowledged that they were not adequately prepared to care for dying patients (White and Coyne, 2011). This implies that students need more preparation for end-of-life care. Nurses in most settings will meet patients at the end of life and need to be prepared for this; furthermore, nurses acknowledge that it is their responsibility to care for patients at the end of life (Browall et al, 2010). Nurses sometimes try to develop trustful and communicative relationships to be able to meet patients’ needs in palliative care and to provide comfort and knowledge (Mok and Chiu, 2004; Johnston and Smith, 2006). However, without such preparation, they may try to withdraw from the patient and avoid contact in an attempt to protect themselves emotionally (Mallory, 2003; Mutto et al, 2010). Sweden is one of the most secularised countries in the world, and previous values are changing (Hornborg, 2012), at least with regard to active participation in church activities. Religion is separated from the traditional public domain and it has mainly been replaced by individual rites, such as seeking ‘inner potential or finding your inner self’ (Hornborg, 2012:403). Kübler-Ross stated in 1969 that modern society suffers from fear and denial of death, and in Sweden death is institutionalised and unfamiliar (Walter, 1994). It is very uncommon in Sweden for place of death to be anywhere other than a hospital or residential care facility (Jakobsson et al, 2006). Fear among nursing students of encountering death and dying might affect their readiness and confidence to deal with these issues. As they will probably never have met a dying person before and will probably have no traditional rites or beliefs to lean on, nursing students have to create
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Susann Strang, Ingrid Bergh, Kristina Ek, Kina Hammarlund, Charlotte Prahl, Lars Westin, Jane Österlind, Ingela Henoch
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their own readiness to act. Some efforts have been made to prepare nursing students for endof-life care. When undergraduate nursing students were given an education with self-reflection in palliative care, their attitudes toward the care of dying patients improved (Mallory, 2003). Furthermore, after an educational programme, US nursing students developed significantly more positive attitudes toward the care of dying patients (Frommelt, 1991).
Aim To prepare students to care for dying patients, it is important to explore how students reason about death and their encounters with dying patients. Therefore, the aim of the present study was to describe nursing students’ reasoning about emotionally demanding questions concerning the care of dying patients.
Methods This study was part of a longitudinal study exploring the development of nursing students’ attitudes toward the care of dying patients at three time points during their education: at the beginning of their education, at the beginning of their second year of education, and at the end of their education. The setting was three universities in Sweden, located in three cities of different sizes and locations. The data for the present study was collected at the introductory lecture at the beginning of the second year. By this point in their nursing education, the students at all three universities have received theoretical education about basic nursing concepts, e.g. anatomy, physiology, and pathophysiology, as well as minor clinical education with a focus on basic patient care. During the 3rd year, the students will receive a short course (1–2 weeks) of lectures and seminars on palliative care issues.
Participants
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In Sweden, nursing students must complete a 3-year bachelor of science programme in nursing before they can attain the status of registered nurses (RNs) from the National Board of Health and Welfare. All students starting their nursing education at the three participating universities during the autumn of 2011 were invited to take part in the study.
Procedure and data collection In the longitudinal study, attitudes toward the care of dying patients were measured using the Frommelt Attitude Toward Care of the Dying (FATCOD) Scale (Frommelt, 1991; Henoch et al, 2013). This is a 30-item questionnaire in which
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Box 1. Author affiliations Susann Strang is Associate Professor, Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Box 457, SE-405 30 Göteborg, Sweden, and Angered Local Hospital, Sweden; Ingrid Bergh is Professor, Kristina Ek is Senior Lecturer, Kina Hammarlund is Senior Lecturer, and Lars Westin is Senior Lecturer, University of Skövde, School of Life Sciences, Sweden; Charlotte Prahl is Senior Lecturer and Jane Österlind is Senior Lecturer, Ersta Sköndal University College and Ersta Hospital, Palliative Research Centre, Stockholm, Sweden, and Department of Health Care Sciences, Ersta Sköndal University College, Sweden; Ingela Henoch is Associate Professor, Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Sweden, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Sweden
two-thirds of the questions concern attitudes toward caring for a dying person and one-third concern nurses’ attitudes toward the dying patient’s family. Items are rated on a five-point Likert scale in which 1=disagree, 3=neither/nor, and 5=agree. The published English version of the FATCOD has been translated into Swedish using recommended procedures for questionnaire translation (White and Elander, 1992; Maneesriwongul and Dixon, 2004). The first measurement was conducted at the beginning of the education, and a preliminary analysis of the items showed that there was great variation in the responses to five of the items (Table 1). Therefore, the data collection of the part of the study reported here was performed at the second measurement at the beginning of the second year: an open-ended question was added to each of the five items with great variation. The open-ended question was worded, ‘How did you reason when completing this question?’ This paper presents the analysis of the responses to this open-ended question.
Analysis Qualitative content analysis was used to analyse the students’ responses to the open-ended question (Graneheim and Lundman, 2004; Krippendorff, 2004). The students’ answers were read repeatedly to get a sense of the whole, and then the texts were reread word-by-word to derive similarities and differences and the data was sorted into main categories and subcategories. The analysis was carried out by three of the authors (IH, IB, and SS) and discussed among these authors until consensus was reached. The paper co-authors focused on validation of the results.
Ethical considerations The study was approved by the Regional Ethics Committee of the University of Gothenburg (Dnr 426-08) and the students were given verbal and written information and provided informed
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Table 1. Mean (SD) of the FATCOD items included in the study in the first and second year 1st-year scores
2nd-year scores
Items
Mean (SD), median, range
Mean (SD), median, range
P-value
3. I would be uncomfortable talking about impending death with the dying person.
2.76 (1.3), 3, 1–5
2.93 (1.2), 3, 1–5
0.153
8. I would be upset when the dying person I was caring for gave up hope of getting better.
2.26 (1.2), 2, 1–5
2.14 (1.1), 2, 1–5
0.227
11. When a patient asks, ‘Nurse, am I dying?’ I think it is best to change the subject to something cheerful.
2.19 (1.2), 2, 1–5
2.26 (1.2), 2, 1–5
0.490
13. I would hope the person I'm caring for dies when I am not present.
2.24 (1.2), 2, 1–5
2.26 (1.1), 2, 1–5
0.890
26. I would be uncomfortable if I entered the room of a terminally ill person and found him/her crying.
2.39 (1.2), 2, 1–5
2.36 (1.3), 2, 1–5
0.803
Range of responses is 1 to 5; 1=totally disagree and 5=totally agree. FATCOD, Frommelt Attitude Toward Care of the Dying Scale; SD standard deviation
Results Of 245 students invited to take part in the longitudinal study, 222 chose to participate in the first year (189 women and 33 men). There were 84, 70, and 68 students from the three universities. The mean age of the students was 24.7 years (standard deviation 6.8), with a median of 22 years (range 18–51). In the second year, 140 of the students completed the questionnaire. The variation in the students’ responses to the five selected FATCOD items was consistent at the second measurement (Table 1). Open-ended responses to any of the five instances of the open-ended question were made by 111 students. When the responses to the open-ended question concerning the students’ reasoning about emotionally demanding questions were analysed, three themes emerged that were fairly homogenous across the five items: death perceptions, the students’ understanding of their current situation, and the students’ expectations of their future proficiency. The subthemes varied more between the questions but could all be grouped
Table 2.Themes and subthemes of the students’ reasoning about emotionally demanding questions concerning the care of dying patients Themes
Subthemes
Death perceptions
Death is natural, death is frightening
The students’ understanding of their current situation
Being comfortable, being aware of their own limitations, experiencing identification, avoiding responsibility
The students’ expectations of their future proficiency
Having the courage to be present, having the skills to listen and support
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into the themes. The themes and subthemes are presented in Table 2.
Death perceptions Although many of the students considered death a natural part of life, there was a huge span of descriptions of the nature of death, ranging from death being a natural part of life to death being incomprehensible and terrifying. Death is natural Students who had previous experience of caring for dying people said they felt that it was natural to think and talk about death, even if these issues seemed remote. Death was reported as a learning opportunity and something one cannot escape. ‘There is something inevitable: death, then, for all of us at some point in life.’ ‘It may be valuable to see the person’s last minutes alive, both emotionally and as a learning opportunity. You bring this experience to the next dying patient you care for.’
The students said it was difficult to know how others think of death, because death could sometimes even be desired. ‘It’s hard to explain what death is … really. It is an unpleasant thing in some cases, though there may be people who long for death.’
There were also students who considered death a natural part of life, as they had religious answers to the patients’ questions: ‘I will say to the patient that it is God who decides for humans when to die. Death is a part of human life, and you should accept it. Perhaps it is difficult to handle this, but everyone is dying.’
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consent. Issues around death could raise uncomfortable feelings for the students, but as this was a part of their future proficiency it was considered not unethical to confront them with these questions.
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Death is frightening Death evoked many emotions, such as feeling helpless, uncertain and inadequate. The thought of caring for dying people evoked feelings of being very unprepared. Facing death was reported as being unpleasant because words, experience, and knowledge were lacking. Such situations were considered demanding, uncomfortable, and even terrifying. Death was considered by some the worst thing that could happen. ‘It scares me, and I was completely destroyed during practice when the patient died, even though I knew it would be so, and did not attend the last hour.’
The whole situation, including the dead body, was reported by some as being scary. ‘Because I think it’s so scary to take care of the cold body. Sitting vigil and being there as long as the patient breathes, I can handle, but then when they die, I think that it’s really hard.’
Some were emotionally engaged and felt pity and grief and were overwhelmed by the situation. There were even feelings of ‘survivors’ guilt’.
The students’ understanding of their current situation Being comfortable Some students, especially those who had previous experience of caring for dying patients, said they felt comfortable and considered it natural to talk about death, even if it seemed remote to other students. They felt that conversations with dying patients were not scary and that issues around death were worthwhile, interesting, and important. They also felt that the more they communicated, the more comfortable they would be. Some students felt that their religious faith made them feel secure in encountering dying patients.
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‘I do not feel uncomfortable when it comes to spending time with a dying person. But I am not sure how I will talk, what questions I will get. I do not have much experience of having pastoral conversations with dying persons.’ ‘Then I have a deep-rooted Christian faith and many times have talked about death, and what happens afterwards is not a subject that is uncomfortable.’
Being aware of their own limitations Most of the students were aware of their own limitations, owing to their lack of knowledge and
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experience of caring for dying people. The students wanted to have ‘deep conversations’ but did not know what to say or how to act. These unfamiliar situations made some of the students feel awkward and stressed, but many hoped that it would become easier with more experience. ‘I would constantly think, “Did I say something inappropriate?” Does the patient suffer? How am I supposed to able to provide enough help?”’
Experiencing identification How the students characterised the death of a patient could sometimes be affected by the patient’s age, in that the students assumed that it is easier for an older person to die. Sometimes the students could easily identify with patients, especially young patients, and be very sad when they realised that a patient was dying. This identification could also hinder the students in supporting the patients. Some students also felt that it could be difficult to comfort an unknown person, while others thought it could be inconvenient if they knew the patient.
❛Fear of encountering death and dying among nursing students might affect their readiness and confidence to deal with these issues.❜
‘It depends on the situation, whether it is a person who is young and has his whole life ahead of him or a 95-year-old on dialysis.’ ‘I guess I’m not really comfortable with death and probably need to learn to “go out of myself” to understand that it is not mine, my mother’s, my child’s death.’
There was concern that the patient’s feelings of severe anxiety would affect the students, who could become emotionally involved and feel sad and uncomfortable, especially in the beginning of their careers. These feelings could influence their ability to support the patient. Avoiding responsibility Some students said they tended to change the subject when patients them asked questions about death or they were unable to give honest answers to the patients’ questions; they wanted to refer to someone else, i.e. a doctor, social worker, or priest. ‘[When the patient asks, “Nurse, am I dying?”] it is a very difficult situation, and many times, I would not answer it but talk about positive things and refer to the doctor, but when you know [that the patient is dying] it’s hard to lie and deny the truth.’
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The students’ expectations of their future proficiency Many students said they felt an obligation to be strong in front of the patients. Caring for dying patients seemed to be very difficult, but something that they had to manage. They referred to nurses’ responsibilities, felt obliged to support the patients, and hoped it would get easier as time went by. Although the students reasoned that talking with dying patients could be very demanding and that it was difficult to talk about death, it was still regarded as part of the nurse’s role. The students stated that it is their responsibility to care, to give support, and to comfort. Being a good listener is an unavoidable task, although in conversation it is difficult and emotionally demanding to find the right words. These demands sometimes urged the students to refer to someone else. Having the courage to be present Some students hoped that they would someday be brave enough to take care of a dying patient. ‘It is important to be able to handle a situation such as that; it’s your job as RNs and it is an obvious task.’
Death and dying are reminders of the shortness of life. The patient’s perception and response is crucial for how the nurse experiences the conversations. It is difficult to support people in severe crisis, but it is still necessary. ‘My role as a caregiver is to support patients in the situation they are in. My values and beliefs have to stand aside; the patient is the priority. What matters is that the caregiver does not give up but offers peace or strength as much as possible to the patient.’
The students reported feeling it is important that a patient should not die alone; however, they felt it could be uncomfortable to be near a dying person owing to their lack of experience. Some students wanted to be present when a patient they had cared for was dying, to know that all went well and that good care was given. The students reported that what it would be like to encounter death anxiety in a patient depended on whether the patient was prepared to die. It was perceived as more difficult if the patient was unprepared for death. The students reported an obligation to be present at the moment of death and understood this to be part of the duty of caring for the patient.
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‘As a nurse, you have to be strong. Maybe it will be sad to see a person that you took care of die in front of your eyes. Maybe you become emotionally sad. But I’ll be comforting for the dying patient and the patient’s family. But then I have to be strong as well.’
Having the skills to listen and support Some students considered talking to dying patients a natural part of the nurse’s role. They said it could be very demanding and difficult to talk about death, but that it is nonetheless an imperative task. The students wanted to be able to communicate about essential issues. Some felt that there was nothing scary about talking about death; instead, it could be interesting and important. It was said to be vital that the patient’s perception guide the discussions. ‘I am open and responsive to a patient’s wish to talk about his death. I want to be able to listen and even help.’
The students reasoned about the importance of being responsive and sensitive to the patients. The responsiveness to the patients concerned respecting the patient and being vigilant concerning their wish to talk, being honest, and recognising that the patient has the right to know the truth about his or her situation. The students also reasoned that it was important to preserve the patient’s hope. ‘It would be quite natural to lose hope sometimes when you’re dying. The main thing for me would have been to make the patient feel as good as possible and try to bring back hope.’
Discussion The main finding of this study was that there is large variation in Swedish nursing students’ reasoning about caring for dying patients. There was also great variety in how the students reasoned about their understanding of their current situation and the ideal image of a skilled nurse’s competence. When the students encountered questions about death and dying, they described their thoughts as hovering between duty, demands, their own insufficiency and lack of experience, and the fear of death. Although they had a cognitive perception about ideal nursing close to death, the vision of death and dying scared them. The results from this study are similar to those of Smith-Stoner et al (2011) concerning students wanting to care for patients with respect, lacking experience, and seeing death as a natural part of
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❛Although many of the students considered death a natural part of life, there was a huge span of descriptions of the nature of death ...❜
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life. However, the students in the present study also acknowledged that caring for dying patients is the nurse’s responsibility and hoped that they could fulfil this responsibility. According to Charalambous and Kaite (2013), nursing students perceived the nurse’s responsibility in palliative care to encompass the provision of emotional and physical comfort as well as the alleviation of symptoms. In nursing education, this sense of responsibility could be used to motivate students to be involved in the care of dying patients. Death was seen as natural and inevitable, but the students also expressed that facing death was difficult and emotionally demanding, as acknowledged by others (Cooper and Barnett, 2005; Sadala and da Silva, 2009; Huang et al, 2010). When the dying patient was old, the students were able to see death as a natural part of life, which was not the case when the patient was their own age. This way of rationalising death was also seen in other studies (Cooper and Barnett, 2005; Smith-Stoner et al, 2011). Although it is natural to die in old age, there is a risk that nurses will not acknowledge that dying can be frightening, unknown, and challenging, even for an old person. Such reasoning could lead old people to not receive appropriate end-oflife care. Some students had experience of caring for dying patients and reasoned in a more confident way when a patient was dying than students without this experience, who tended to be more frightened. Similar findings have been reported previously in studies where nursing students were interviewed about their experiences caring for dying patients (Huang et al, 2010; Smith-Stoner et al, 2011). In nursing education, it is important to find these students who are scared and help them to become more comfortable in the care of dying patients. For a nurse, it is almost inevitable to meet dying patients; therefore, these students need sensitive guidance in these matters. One way of achieving this is for the students to share their personal feelings with experienced nurses who can affirm their concerns (Cooper and Barnett, 2005; Huang et al, 2010). Cooper and Barnett (2005) suggest it is important to recognise that it is natural for caring for dying patients to provoke anxiety and that such feelings are also experienced by RNs. The study also shows that students felt a strong inner demand and duty to be brave and supportive. This has also been found in other studies; students would do everything they could physically and mentally to comfort, show consideration to, and encourage the dying patient, to
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promote a sense of security and calm (Smith-Stoner et al, 2011). This implies that nursing students need to overcome their fear and devote themselves to this during the dying period. It has been suggested that one way to provide students with this competence is to use supervised reflection in caring science throughout nursing education (Mallory, 2003; Johansson et al, 2006; Arvidsson et al, 2008; Berglund et al, 2012). Other ways could be to use simulated situations (Gillan et al, 2013) or training by drama (Ekebergh et al, 2004). Both supervised reflection and drama help students to dare to approach demanding situations in safe surroundings, with support and guidance from experienced teachers and fellow students.
Limitations The sample included students from only three universities, and the respondents were predominantly female. Therefore, the data should be interpreted with caution. Written responses to open-ended questions present no opportunity to develop the answers through follow-up questions. Such an opportunity could have been valuable as the topic is sensitive and complex and difficult to express briefly in written text.
❛Both supervised reflection and drama help students to dare to approach demanding situations in safe surroundings, with support and guidance from experienced teachers and fellow students.❜
Future research Future research is needed to explore whether the students are well prepared for their future proficiency concerning end-of-life care after the limited 1–2 weeks of education they receive in their third year. Such research could be conducted before the students’ graduation by posing questions similar to those in the present study.
Conclusion This study provides useful information concerning students’ reasoning about emotionally demanding questions in the care of dying patients. Such knowledge is valuable for teachers to help students to overcome their fears by means of supervised reflection, simulated situations, or drama. This might support scared students who are avoiding lonely, dying patients, and improve their ability to provide support. They might thereby become more confident to fulfil their expectations concerning their future proficiency. I● JPN Funding Funding for this project has been gratefully received from the Gunvor & Josef Anérs Fund and the Assar Gabrielsson’s Fund. Declaration of interests The authors have no conflicts of interest to declare.
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International Journal of Palliative Nursing is very grateful for the advice provided by its pool of dedicated volunteer peer reviewers and always appreciates new offers from experienced clinicians and academics interested in helping out.
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