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Communicating with terminally ill cancer patients and their families
Article
Communicating with terminally ill cancer patients and their families Elisabet Hjörleifsdóttir and Diana E. Carter
This qualitative study aimed to investigate whether 4th year undergraduate nursing students raise concerns about communication with terminally ill and dying cancer patients and their families. It focused on factors which could influence students’ feelings of insecurity/security when communicating with this group of patients and their families, factors which could influence communication, and whether students felt adequately prepared for this kind of nursing. The research involved interviewing 12 student nurses in their 4th year of their undergraduate education at a Scottish university using content analysis for analyzing the data. Five themes and 13 sub-themes emerged from this analysis. The findings revealed that communicating with terminally ill and dying cancer patients in the acute setting is difficult for student nurses and issues about death and dying tended to be ignored. While it was found that university lectures about death and dying were helpful, lack of support and guidance within the clinical setting was a major concern. © 2000 Harcourt Publishers Ltd
Introduction Elísabet Hjörleifsdóttir MN, BSc, RN, NBS DipN, Research Nurse, Palliative Care Nurse, Akureyri Regional Hospital, Eyrarlandsvegi, 600-Akureyri, Iceland. Fax: +354 463 0997; Tel.: +354 463 0155; E-mail:[email protected] Diana E. Carter MSc, RN, RM, RNT, Senior Lecturer, Nursing and Midwifery School, University of Glasgow, UK. (Requests for off prints to EH) Manuscript accepted: 18 May 2000
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Various authors have concluded that cancer patients express diverse opinions about the quality of communication in hospitals (Cella et al. 1990, Wilkinson 1991, Dennison 1996, Grahn 1996, Corner 1997). According to Doyle (1994), more problems and difficulties arise from poor communication than from anything else in all medical and nursing practice. Communication has received increasing attention over the last two decades (Reynolds 1978, Knight & Field 1981, Hargie et al. 1989, Cella et al. 1990, Richards 1990, Wilkinson 1991, Faulkner 1993, Dennison 1996, Corner 1997, Heaven & Maguire 1997). A range of issues is addressed within the literature about communication from defining the term therapeutic communication (Ruesch 1961, Kozier 1988) to blocking behaviours (Kozier 1988, Wilkinson 1991, Booth et al. 1996). To be able to meet the needs of cancer patients and their families and to enable them to identify and discuss the causes of their concerns and anxieties
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(2000) 20, 646–653
adequate skills in communication are required (Faulkner 1986, Heaven & Maguire 1997).
Literature review The majority of the literature regarding the cancer nurse, stress and the person with cancer points to the inadequacy of current nurse education in providing training for communication and counselling skills and most of this literature focuses on nurses rather than student nurses (Hunt 1991, Wilkinson 1991, May 1993, Hanson 1994, Dennison 1995, Wilkinson 1995, Evans & Payne 1997, Heaven & Maguire 1997). It has, however, been identified that student nurses may find it difficult to communicate with patients and their families (Knight & Field 1981, Melia 1982, Hockley 1989, Franks et al. 1994). Most of the studies of student nurses within cancer and palliative care emphasized student nurses’ education on death and dying rather than special focus on communication (Birch 1983, Field & Kitson 1986, Hockley 1989, Hurtig & Stewin 1990,
© 2000 Harcourt Publishers Ltd doi:10.1054/nedt.2000.00483, available online at http://www.idealibrary.com on
Communicating with terminally ill cancer patients and their families
Wilkinson 1991), student nurses’ accounts of their experience of being learners of nursing (Melia 1982), and student nurses perception of themselves and of the patients they nursed in various clinical settings (Seed 1994)
Student nurses and communication Knight and Field (1981) found that student nurses felt the relationship with dying patients particularly demanding, especially if patients were very anxious and in need of reassurance. In Melia’s (1982) study students reported difficulties when talking to patients and that poor quality of the hand-over report to the oncoming shift led to further difficulties in communicating with the patients. Hockley (1989), Franks et al. (1994) and Seed (1994) concluded that lack of time and no formal ward teaching on death but learning by observation influenced student nurses’ interpersonal relationships with their patients and was a concern to them.
Education Field and Kitson (1986) investigated the nature and extent of teaching about death and dying and found that most nursing schools in the UK use lectures (85%) and small group work (89–92%) when teaching this subject. Schools which provided teaching about death and dying reported students to be less anxious and better prepared to deal with death-related issues. However, it has been found that student nurses strongly emphasize the need for supervised clinical practice to be integrated with the process of death education (Degner & Gow 1988). Hurting and Stewin (1990) comment that there are no data available about the appropriate approach to this kind of learning process, and suggest that an experiential programme (personal focus) is more effective than a didactic programme (academic focus) in helping students with no personal death experience to confront their thoughts and feelings about the topic. In contrast, Coolbeth and Sullivan (1984) had earlier found that personal exposure to death had no significant effect on attitudes towards death while a didactic programme had a significantly positive effect on participants’ attitude toward death.
© 2000 Harcourt Publishers Ltd
Research approach Since the purpose of the study was to investigate whether any particular situations or factors influenced how student nurses communicate with terminally ill and dying cancer patients and their families, a qualitative ethnonursing method was chosen as the research approach for this study. The goal of ethnonursing is to discover new nursing knowledge as perceived or experienced by nurses and or consumers of the health service. The researcher’s aim is to obtain attitudes, meanings and experiences of the people so that truth and realities can be known (Leininger 1985). According to Miles and Huberman (1994) qualitative research is always interested in events, why things happen as they do, and even to assess causality in some instances. Emphasis is on people’s lived experience, which in turn makes this approach well suited for locating the meanings people place on events happening in their lives and for connecting these meanings to the social world around them (Miles & Huberman 1994).
Study methods Population and sample Thirty-three student nurses at one university in the west of Scotland served as the study population. A non-probability purposive sampling approach was utilized in the selection of the subjects. Eligible students were those in the 4th year of their undergraduate course, studying at a particular university for a degree in nursing, who had personal experience of communication with long suffering and dying cancer patients and their families within the hospital and/or community settings. Permission for access was sought and granted from the Head of the Nursing Department at the university where the study was carried out.
Data collection A semi-structured interview consisting of seven prompt questions was used to facilitate in-depth exploration of the students’ perceptions of their experience of working with terminally ill and dying patients and their families. A small pilot study was carried out to ensure that the design was feasible and see if it revealed any errors in
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the method. All interviews were tape recorded and each participant was interviewed once for approximately 1 hour. The purpose of the study, confidentiality of the information given, the freedom to withdraw at any time and to refuse to answer any questions was discussed prior to each interview. Every tape was labelled and dated after each interview and brief notes were made by the researcher for later analysis. Probe questions were used to elicit more useful or detailed information from the respondents. The prompt questions were: 1. Are there any particular situations which make you insecure in your work with terminally ill and dying cancer patients and their families? 2. Do you feel confident when you communicate with these patients and their families? 3. How would you say you managed questions from terminally ill and dying cancer patients and their families? 4. Are there any particular situations which make you feel secure in your work with terminally ill and dying cancer patients and their families? 5. Can you describe your feelings and your experience of caring for terminally ill and dying cancer patients and their families? 6. Can you identify any environmental factors that may influence your conversation with terminally ill and dying cancer patients and their families? 7. Do you feel that your undergraduate education has prepared you adequately to communicate with patients who are terminally ill or dying and their families?
Data analysis Content analysis with a specific focus on the work of Miles and Huberman (1994) and Leininger (1985) on data analysis in qualitative studies was utilized in this study. The researcher transcribed the tape recordings one after another as early as possible after each interview. Significant statements which were directly related to the student nurses’ experiences of caring and communicating with terminally ill and dying patients and their families were extracted from the transcribed interview. The next step was to link them together and find the meaning in
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them. The analyzed transcript allowed for further check of validity. When the meaning units had been labelled and divided up into clusters and themes, each theme was checked through to see whether or not the units of meaning really did fit in a particular theme (Burnard 1994). Some of the student nurses who participated in this study evaluated and gave feedback on the major findings. This should secure the internal validity of the study (Miles & Huberman 1994). Five broad themes were identified and 13 sub-themes around the student nurses’ feelings about communicating with terminally ill and dying cancer patients and their families (see Table 1). Permission to use direct quotations from the transcript was requested from all the participants. These quotes are intended to give a clearer picture of the students’ experiences and understanding of the areas explored.
Findings Table 1 identifies the themes which developed from the students’ responses to the prompt questions. These themes serve as a framework for students’ evaluation of what made them or could make them feel insecure or secure in their work with this group of patients. Table 1 also represents sub-themes which are interconnected and all describe factors which increase the students’ feeling of insecurity/security when interacting with terminally ill and dying cancer patients and their families. The answers to the prompt questions given by the student nurses tended to overlap and the themes are not listed in rank order. The first two themes which represent factors related to feelings of insecurity and security developed from the students responses to the first four prompt questions. However, lack of involvement in the total care of patients and families and lack of information are listed first as it became apparent that the remaining themes stemmed from these. All the students (n=12) expressed general dissatisfaction with not being adequately involved in nursing these patients. Difficult situations which made students feel insecure were described by many as incomplete information, absence of information or misleading information between all individuals concerned leading to a conflict. They were worried that they would give the patients wrong
© 2000 Harcourt Publishers Ltd
The role of university lectures Mentorship The acute setting and the time factor Lack of privacy Being with the patient It just so happened that I was there Sharing emotions with the patients Being able to establish a relationship with the patient and his family Being involved in the total care of the patient and his family
© 2000 Harcourt Publishers Ltd
Lack of involvement in total care of patient Lack of information Communicating with dying patients Being ‘just a student nurse’
Students experiences of communicating with terminally ill and dying patients Factors related to feelings of security Factors related to feelings of insecurity
Table 1
Events or states enhancing feelings of security/insecurity in student nurses: themes and subthemes
Factors influencing communication with terminally ill and dying patients
Ways of preparing student nurses for this kind of nursing
Communicating with terminally ill cancer patients and their families
information which would upset the patients. Many students (n=11) initially expressed that they were never really told what was going on and not really told throughout the shift what was happening. A majority of the participants consistently reported that both patients and families asked students a lot of questions and that they had been asked by dying patients if they were dying. Although some students expressed that they felt vulnerable because of the nature of the question there was little indication that any of these students felt that they could not deal with such questions provided they had been given information about how much the particular patient already knew and how the family was coping with the situation. That students have supernumerary status may result in them not being seen as part of the nursing staff which may influence the amount of information they are given about patients. Most of the students felt insecure and uncomfortable if they sat down and talked to the patients and some felt that they had to ask permission to talk to them. It was, however, often left to them to go and talk to, or just be with, the dying patient and his family. Furthermore students believed that when talking to patients they were not necessarily seen as working, they saw themselves ‘as messengers’. Several students reported that on many occasions when they were trying to have a conversation with patients they were asked to go and do something else: I have been in a conversation with somebody before [a patient] and I don’t know whether it is because I am a student nurse one of the nurses just came up and said ‘x’ are you busy? … and I said well … aha … I am talking to a patient … but we need somebody to go to pharmacy can you go now please … you should be able to say no … I feel very annoyed at that … I don’t think you should be interrupted. There is an obvious interconnection between being involved in the total care of the patient and that of establishing a relationship with the patient and his family. Five students clarified that being able to establish a relationship with patients, to lead them to talk about their emotions rather than their treatment, might influence their feeling of security, but being a student nurse was an obstacle. Only two students recalled that when
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they were involved in the total care of a patient they enjoyed that and felt secure in what they were doing: The nurse — she was my mentor … just told me everything about every patient … and I could speak to them … because at least I could feel that I really knew what was going on … whereas at other placements it has always been that I have not known the full story and I have always, you know, hung back without saying anything … because I have felt I could say something wrong not knowing the full story. Eight students commented that being satisfied with the job they were doing made them feel secure in their work. In addition, all of them cited feedback on their performance from patients and families as being important. It was interesting to find that none of these eight students reported receiving positive feedback from qualified nursing staff, indicating that discussion of issues relating to death and dying tended to be ignored until the last day of the placement when they received their final assessment report. A third theme related to students’ experiences of communicating with terminally ill and dying patients emerged from the first prompt question and is based on the participants’ self-report about a specific event which had a significant meaning to them. Nine students had, by chance, experiences of being with patients after they had been told by a doctor about a cancer diagnosis or about a cancer recurrence ‘in the middle of a ward round’ or ‘in the middle of the ward’, ‘it just so happened that I was there’, and some of the students found it quite a shocking experience having to answer patients’ questions afterwards because in most cases they had not been with the doctor but just close by: This man had been told that he had lung cancer and also that it had spread … I was opposite giving somebody a bed bath … so I was behind the curtains but I could hear, I mean everybody in the room could hear what was said … and after the doctor had left I was moving round to this man, he was my next task … and he did not have a clue what he had been told, he did not understand them.
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All the students had experienced being with distressed dying patients or with an upset family member. They usually found it upsetting and felt helpless towards the patient or the family. Several students gave examples where they had shared emotions with patients where there ‘was lot of kind of emotions’. One said: We were sitting chatting away … which nobody had done with her … I was nearly in tears you know … she was saying … how she felt and she was asking me ‘do I have cancer? The fourth theme identifies factors which emerged from prompt questions five and six. It presents the main factors which students recognized as obstacles when it came to communicating with terminally ill and dying patients or their families. All students who participated had had experiences of caring for terminally ill and dying patients and their families in the acute setting. All the students highlighted that there was never sufficient time within the acute general wards to sit and talk to patients. Students could recall conversations where patients expressed their gratitude because students had given them time and had been with them. This was, however, not always possible: Even nowadays there is a definite culture in the wards … if you are not running around, you know, sweat dripping off you, trying to do ten things at once … if you are not doing that then you are not working. I think it is especially for students because we are being assessed while we are there … there is a worry that if you sit down and you are talking to patients you are not actually doing something, you are not getting your hands dirty, you are not working, if you know what I mean. All the students felt that the acute setting was an inappropriate environment for terminally ill and dying cancer patients and their families and some of the students had experienced that patients had been reluctant to ask for basic things such as a commode because staff were so busy. Students highlighted the lack of privacy in the general wards as the main communication barrier and commented that they felt curtains around the patient’s bed to be of little use, one student found the lack of privacy offensive:
© 2000 Harcourt Publishers Ltd
Communicating with terminally ill cancer patients and their families
I found it offensive to me … I felt it was a reflection of a standard of practice … I felt oh my goodness we had failed that family by not giving them the privacy. It kind of gave the impression that we had no respect for the patient and no respect for the family and no respect of death … but there was nothing we could do about it. The fifth theme, ways of preparing student nurses for this kind of nursing, is based on the participants’ own responses to the final prompt question. Lectures about communication and about death and dying at the university were viewed as beneficial to students (n=11). It helped the students to gain confidence in dealing with these issues. However, exactly how lecturers became useful for each individual student did vary. One student felt that when preparing students for this aspect of nursing the only way to make it useful was to have clinical supervision and support when they were actually in the placement and had to talk to dying patients. Therefore a mentor in such situations would be very useful. Two students had experienced having a mentor who discussed with them communication with terminally ill and dying patients, one while on clinical placement in the community, the other during practice in accident and emergency. The remaining 10 students had never had this benefit nor had they been encouraged by their mentors to communicate with these patients.
Discussion of study findings Lack of involvement (n=12) and lack of information (n=11) were reported frequently and were constantly reported as two intertwined issues. This study points to severe difficulties in this respect and are similar to difficulties identified by Knight and Field (1981) who found that when a breakdown of communication between health care professionals arises it is often the student nurses who suffer. The findings also mirror those of Melia (1982) which highlighted that student nurses suffer from little or no information about patients, which is largely caused by how senior staff communicate information. The students’ identification of not being part of the full picture appears to influence feelings of insecurity and dissatisfaction with the quality of
© 2000 Harcourt Publishers Ltd
care they provide and their communication with this group of patients. This supports findings which showed that student nurses were excluded from important decisions in the ward and that it caused them concern, especially if patients were not aware of their own condition (Franks et al. 1994). In addition, Melia (1982) found that students were worried about making mistakes and felt embarrassed if they were not put in the full picture about the patients’ total care. In both this and Melia’s (1982) study the clear indication from students was that often they did not know who knew what, who had been told what and by whom. The uncertainty the students in both studies experienced in relation to both their own knowledge and that of patients appeared to be of major concern. Findings in both these studies confirm that student nurses are asked a lot of questions by patients and families including whether the patient was going to die. Like Wilkinson (1995) and May (1993) this study found that the uncertainty experienced by the students derived from lack of information and inadequate communication down the hierarchy. One could question whether there is a connection between this little or total lack of information down the hierarchy of health care professionals and the diversity of opinions about the quality of communication in hospitals expressed by patients and families (Hilton 1993, Dennison 1996). However, students felt confident taking about patients’ imminent death if everybody knew what had been said and to whom. Such situations raise a number of dilemmas and should be considered as situations which could affect the quality of care provided by student nurses. They not only have the effect of making student nurses emotionally upset but patients and families alike could possibly experience similar feelings. Findings in this study suggest that there may be a need for restructuring the current supervision and support students are provided with while in their clinical placements. The overwhelming opinion of the students (n=11) reflect those identified by Degner and Gow (1988), in that university lectures were beneficial but in both studies the students emphasized the additional need for clinical supervision and support when they were actually there having a conversation with terminally ill or a dying patient. In this study none of the students had experienced encouragement to communicate
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with terminally ill and dying patients, neither had they experienced their mentors speaking to them about how to communicate with these patients with the exception of two students who had had positive experiences in this respect. It could be suggested that there are no ready solutions to how nurse educators can best help students to prepare themselves before they are actually in that situation. However, despite the fact that students in this study found lectures beneficial it was interesting to find that they felt it difficult to utilize their knowledge in the clinical placements. One way to enable them to utilize their knowledge might be that the teaching of communication skills could incorporate role playing teaching strategies as a means of helping to prepare the students for the types of situations they may encounter in practice.
Conclusion Fourth year undergraduate student nurses are in the final stages of their education and will be entering the nursing profession in a short time and it is to be expected that they will have encountered problems in communicating with this group of patients and their families. All the students in this study viewed communication with patients as an important part of nursing, however, deficiencies exist in relation to how students are supported and/or encouraged by their supervisors within the clinical setting with respect to the type of communication under study. Issues about death and dying tended to be ignored and discussed only in relation to students’ assessment on the ward. The literature review had revealed that in general student nurses do experience difficulty communicating with patients and their families. However, no studies were found which focused exclusively on students’ concerns about communicating with termincally ill cancer patients and their families. This small study has shown that 4th year student nurses appear to express similar concerns to those that research has shown qualified nurses express over this aspect of nursing.
Limitations of the study and future research The study involved only 12 student nurses from one educational institution, thus the findings may
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not be representative of a larger student nurse population. To investigate this problem, in addition to interviewing students, the methodology of direct observation in order to identify both students’ and their supervisors’ behaviour on wards where there are terminally ill and dying cancer patients could be useful. A larger sample would be preferable to allow generalizability, replicability and the ability to compare findings with similar groups. References Birch J A 1983 Anxiety and conflict in nurse education. In: Davis B D (ed) Research in Nurse Education. GroomHelm, Kent p26–47 Booth K, Maguire P M, Butterworth T, Hillier V F 1996 Perceived professional support and the use of blocking behaviours by hospice nurses. Journal of Advanced Nursing 24:522–527 Burnard P 1994 Searching for meaning: a method of analysing interview transcripts with a personal computer. Nurse Education Today 14:111–117 Cella D F, Mahon S M, Donovan M I 1990 Cancer recurrence as a traumatic event. Behavioral Medicine Spring: 15–21 Coolbeth L A C, Sullivan L I 1984 A study of the effects of personal and academic exposures on attitudes of nursing students towards death. Journal of Nursing Education 23(8):338–341 Corner J 1997 Beyond survival rates and side effects: cancer nursing as therapy. Cancer Nursing 20(1):3–10 Degner L F, Gow C M 1988 Evaluations of death education in nursing. Cancer Nursing 11(3):151–159 Dennison A 1996 Uncertain journey: women’s experience of living with cancer. Orkney Chronicles, Cornwall Dennision S 1995 An exploration of the communication that takes place between nurses and patients whilst cancer chemotherapy is administered. Journal of Clinical Nursing 4:227–223 Doyle D 1994 Domiciliary palliative care a guide for the primary care team. Oxford University Press, Oxford Evans A L, Payne S 1997 Light-hearted death talk in a palliative day care context. Journal of Advanced Nursing 26:1091–1097 Faulkner A 1986 Talking to patients: human interest. Nursing Times 82(33):33–34 Faulkner A 1993 Helping relatives to cope with a diagnosis of cancer in a loved one. Journal of Cancer Care 2:132–136 Field D, Kitson C 1986 Formal teaching about death and dying in UK nursing schools. Nurse Education Today 6:270–276 Franks V, Watts M, Fabricius J 1994 Interpersonal learning in groups: an investigation. Journal of Advanced Nursing 20:1162–1169 Grahn G 1996 Coping with the cancer experiences I. Developing an education and support programmed for cancer patients and their significant others. European Journal of Cancer Care 5:176–181
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Communicating with terminally ill cancer patients and their families
Hanson E J 1994 An exploration of the taken-for-granted world of the cancer nurse in relation to stress and the person with cancer. Journal of Advanced Nursing 19:12–20 Hargie O, Saunders C, Dickson D 1989 Social skills in interpersonal communication, 2nd ed Routledge, London. Heaven C, Maguire P 1997 Disclosure of concerns by hospice patients and their identification by nurses. Palliative Medicine 11:283–290 Hockley J 1989 Caring for the dying in acute hospitals. Nursing Times 85(7):47–50 Hunt M 1991 Being friendly and informal: reflected in nurses’ terminally ill patients’ and relatives’ conversations at home. Journal of Advanced Nursing 16: 929–938 Hurtig W A, Stewin L 1990 The effect of death education and experience on nursing students’ attitude towards death. Journal of Advanced Nursing 15:29–34 Knight M, Field D 1981 A silent conspiracy: coping with dying patients on an acute surgical ward. Journal of Advanced Nursing 6:221–229 Kozier B 1988 Concepts and issues in nursing practice Addison Wesley, Menlo Park Leininger M 1985 Ethnography and ethnonursing: models
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and modes of qualitative data analysis. In: Leininger M (ed) Qualitative Research Methods in Nursing. Grune & Stratton, New York p 33–71 May C 1993 Disclosure of terminal prognoses in a general hospital: the nurse’s view. Journal of Advanced Nursing 18:1362–1368 Melia K M 1982 ‘Tell it as it is’ qualitative methodology and nursing research: understanding the student nurse’s world. Journal of Advanced Nursing 7: 327–335 Miles M B, Huberman A M 1994 Qualitative data analysis: a sourcebook of new methods, 2nd edn. London, Sage Reynolds M 1978 No news is bad news: patients views about communication in hospitals. British Medical Journal June: 1673–1676 Richards T 1990 Chasms in communication. British Medical Journal 301:1407–1408 Ruesch J 1961 Therapeutic communication, 2nd ed New York, W W Norton Seed A 1994 Patients to people. Journal of Advanced Nursing 19:738–748 Wilkinson S 1991 Factors which influence how nurses communicate with cancer patients. Journal of Advanced Nursing 16:677–688 Wilkinson S 1995 The changing pressure for cancer nurse 1986–93. European Journal of Cancer Care 4: 69–74
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Communicating with terminally ill cancer patients and their families Elisabet Hjörleifsdóttir and Diana E. Carter
This qualitative study aimed to investigate whether 4th year undergraduate nursing students raise concerns about communication with terminally ill and dying cancer patients and their families. It focused on factors which could influence students’ feelings of insecurity/security when communicating with this group of patients and their families, factors which could influence communication, and whether students felt adequately prepared for this kind of nursing. The research involved interviewing 12 student nurses in their 4th year of their undergraduate education at a Scottish university using content analysis for analyzing the data. Five themes and 13 sub-themes emerged from this analysis. The findings revealed that communicating with terminally ill and dying cancer patients in the acute setting is difficult for student nurses and issues about death and dying tended to be ignored. While it was found that university lectures about death and dying were helpful, lack of support and guidance within the clinical setting was a major concern. © 2000 Harcourt Publishers Ltd
Introduction Elísabet Hjörleifsdóttir MN, BSc, RN, NBS DipN, Research Nurse, Palliative Care Nurse, Akureyri Regional Hospital, Eyrarlandsvegi, 600-Akureyri, Iceland. Fax: +354 463 0997; Tel.: +354 463 0155; E-mail:[email protected] Diana E. Carter MSc, RN, RM, RNT, Senior Lecturer, Nursing and Midwifery School, University of Glasgow, UK. (Requests for off prints to EH) Manuscript accepted: 18 May 2000
646
Various authors have concluded that cancer patients express diverse opinions about the quality of communication in hospitals (Cella et al. 1990, Wilkinson 1991, Dennison 1996, Grahn 1996, Corner 1997). According to Doyle (1994), more problems and difficulties arise from poor communication than from anything else in all medical and nursing practice. Communication has received increasing attention over the last two decades (Reynolds 1978, Knight & Field 1981, Hargie et al. 1989, Cella et al. 1990, Richards 1990, Wilkinson 1991, Faulkner 1993, Dennison 1996, Corner 1997, Heaven & Maguire 1997). A range of issues is addressed within the literature about communication from defining the term therapeutic communication (Ruesch 1961, Kozier 1988) to blocking behaviours (Kozier 1988, Wilkinson 1991, Booth et al. 1996). To be able to meet the needs of cancer patients and their families and to enable them to identify and discuss the causes of their concerns and anxieties
Nurse Education Today
(2000) 20, 646–653
adequate skills in communication are required (Faulkner 1986, Heaven & Maguire 1997).
Literature review The majority of the literature regarding the cancer nurse, stress and the person with cancer points to the inadequacy of current nurse education in providing training for communication and counselling skills and most of this literature focuses on nurses rather than student nurses (Hunt 1991, Wilkinson 1991, May 1993, Hanson 1994, Dennison 1995, Wilkinson 1995, Evans & Payne 1997, Heaven & Maguire 1997). It has, however, been identified that student nurses may find it difficult to communicate with patients and their families (Knight & Field 1981, Melia 1982, Hockley 1989, Franks et al. 1994). Most of the studies of student nurses within cancer and palliative care emphasized student nurses’ education on death and dying rather than special focus on communication (Birch 1983, Field & Kitson 1986, Hockley 1989, Hurtig & Stewin 1990,
© 2000 Harcourt Publishers Ltd doi:10.1054/nedt.2000.00483, available online at http://www.idealibrary.com on
Communicating with terminally ill cancer patients and their families
Wilkinson 1991), student nurses’ accounts of their experience of being learners of nursing (Melia 1982), and student nurses perception of themselves and of the patients they nursed in various clinical settings (Seed 1994)
Student nurses and communication Knight and Field (1981) found that student nurses felt the relationship with dying patients particularly demanding, especially if patients were very anxious and in need of reassurance. In Melia’s (1982) study students reported difficulties when talking to patients and that poor quality of the hand-over report to the oncoming shift led to further difficulties in communicating with the patients. Hockley (1989), Franks et al. (1994) and Seed (1994) concluded that lack of time and no formal ward teaching on death but learning by observation influenced student nurses’ interpersonal relationships with their patients and was a concern to them.
Education Field and Kitson (1986) investigated the nature and extent of teaching about death and dying and found that most nursing schools in the UK use lectures (85%) and small group work (89–92%) when teaching this subject. Schools which provided teaching about death and dying reported students to be less anxious and better prepared to deal with death-related issues. However, it has been found that student nurses strongly emphasize the need for supervised clinical practice to be integrated with the process of death education (Degner & Gow 1988). Hurting and Stewin (1990) comment that there are no data available about the appropriate approach to this kind of learning process, and suggest that an experiential programme (personal focus) is more effective than a didactic programme (academic focus) in helping students with no personal death experience to confront their thoughts and feelings about the topic. In contrast, Coolbeth and Sullivan (1984) had earlier found that personal exposure to death had no significant effect on attitudes towards death while a didactic programme had a significantly positive effect on participants’ attitude toward death.
© 2000 Harcourt Publishers Ltd
Research approach Since the purpose of the study was to investigate whether any particular situations or factors influenced how student nurses communicate with terminally ill and dying cancer patients and their families, a qualitative ethnonursing method was chosen as the research approach for this study. The goal of ethnonursing is to discover new nursing knowledge as perceived or experienced by nurses and or consumers of the health service. The researcher’s aim is to obtain attitudes, meanings and experiences of the people so that truth and realities can be known (Leininger 1985). According to Miles and Huberman (1994) qualitative research is always interested in events, why things happen as they do, and even to assess causality in some instances. Emphasis is on people’s lived experience, which in turn makes this approach well suited for locating the meanings people place on events happening in their lives and for connecting these meanings to the social world around them (Miles & Huberman 1994).
Study methods Population and sample Thirty-three student nurses at one university in the west of Scotland served as the study population. A non-probability purposive sampling approach was utilized in the selection of the subjects. Eligible students were those in the 4th year of their undergraduate course, studying at a particular university for a degree in nursing, who had personal experience of communication with long suffering and dying cancer patients and their families within the hospital and/or community settings. Permission for access was sought and granted from the Head of the Nursing Department at the university where the study was carried out.
Data collection A semi-structured interview consisting of seven prompt questions was used to facilitate in-depth exploration of the students’ perceptions of their experience of working with terminally ill and dying patients and their families. A small pilot study was carried out to ensure that the design was feasible and see if it revealed any errors in
Nurse Education Today
(2000) 20, 646–653
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the method. All interviews were tape recorded and each participant was interviewed once for approximately 1 hour. The purpose of the study, confidentiality of the information given, the freedom to withdraw at any time and to refuse to answer any questions was discussed prior to each interview. Every tape was labelled and dated after each interview and brief notes were made by the researcher for later analysis. Probe questions were used to elicit more useful or detailed information from the respondents. The prompt questions were: 1. Are there any particular situations which make you insecure in your work with terminally ill and dying cancer patients and their families? 2. Do you feel confident when you communicate with these patients and their families? 3. How would you say you managed questions from terminally ill and dying cancer patients and their families? 4. Are there any particular situations which make you feel secure in your work with terminally ill and dying cancer patients and their families? 5. Can you describe your feelings and your experience of caring for terminally ill and dying cancer patients and their families? 6. Can you identify any environmental factors that may influence your conversation with terminally ill and dying cancer patients and their families? 7. Do you feel that your undergraduate education has prepared you adequately to communicate with patients who are terminally ill or dying and their families?
Data analysis Content analysis with a specific focus on the work of Miles and Huberman (1994) and Leininger (1985) on data analysis in qualitative studies was utilized in this study. The researcher transcribed the tape recordings one after another as early as possible after each interview. Significant statements which were directly related to the student nurses’ experiences of caring and communicating with terminally ill and dying patients and their families were extracted from the transcribed interview. The next step was to link them together and find the meaning in
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them. The analyzed transcript allowed for further check of validity. When the meaning units had been labelled and divided up into clusters and themes, each theme was checked through to see whether or not the units of meaning really did fit in a particular theme (Burnard 1994). Some of the student nurses who participated in this study evaluated and gave feedback on the major findings. This should secure the internal validity of the study (Miles & Huberman 1994). Five broad themes were identified and 13 sub-themes around the student nurses’ feelings about communicating with terminally ill and dying cancer patients and their families (see Table 1). Permission to use direct quotations from the transcript was requested from all the participants. These quotes are intended to give a clearer picture of the students’ experiences and understanding of the areas explored.
Findings Table 1 identifies the themes which developed from the students’ responses to the prompt questions. These themes serve as a framework for students’ evaluation of what made them or could make them feel insecure or secure in their work with this group of patients. Table 1 also represents sub-themes which are interconnected and all describe factors which increase the students’ feeling of insecurity/security when interacting with terminally ill and dying cancer patients and their families. The answers to the prompt questions given by the student nurses tended to overlap and the themes are not listed in rank order. The first two themes which represent factors related to feelings of insecurity and security developed from the students responses to the first four prompt questions. However, lack of involvement in the total care of patients and families and lack of information are listed first as it became apparent that the remaining themes stemmed from these. All the students (n=12) expressed general dissatisfaction with not being adequately involved in nursing these patients. Difficult situations which made students feel insecure were described by many as incomplete information, absence of information or misleading information between all individuals concerned leading to a conflict. They were worried that they would give the patients wrong
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The role of university lectures Mentorship The acute setting and the time factor Lack of privacy Being with the patient It just so happened that I was there Sharing emotions with the patients Being able to establish a relationship with the patient and his family Being involved in the total care of the patient and his family
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Lack of involvement in total care of patient Lack of information Communicating with dying patients Being ‘just a student nurse’
Students experiences of communicating with terminally ill and dying patients Factors related to feelings of security Factors related to feelings of insecurity
Table 1
Events or states enhancing feelings of security/insecurity in student nurses: themes and subthemes
Factors influencing communication with terminally ill and dying patients
Ways of preparing student nurses for this kind of nursing
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information which would upset the patients. Many students (n=11) initially expressed that they were never really told what was going on and not really told throughout the shift what was happening. A majority of the participants consistently reported that both patients and families asked students a lot of questions and that they had been asked by dying patients if they were dying. Although some students expressed that they felt vulnerable because of the nature of the question there was little indication that any of these students felt that they could not deal with such questions provided they had been given information about how much the particular patient already knew and how the family was coping with the situation. That students have supernumerary status may result in them not being seen as part of the nursing staff which may influence the amount of information they are given about patients. Most of the students felt insecure and uncomfortable if they sat down and talked to the patients and some felt that they had to ask permission to talk to them. It was, however, often left to them to go and talk to, or just be with, the dying patient and his family. Furthermore students believed that when talking to patients they were not necessarily seen as working, they saw themselves ‘as messengers’. Several students reported that on many occasions when they were trying to have a conversation with patients they were asked to go and do something else: I have been in a conversation with somebody before [a patient] and I don’t know whether it is because I am a student nurse one of the nurses just came up and said ‘x’ are you busy? … and I said well … aha … I am talking to a patient … but we need somebody to go to pharmacy can you go now please … you should be able to say no … I feel very annoyed at that … I don’t think you should be interrupted. There is an obvious interconnection between being involved in the total care of the patient and that of establishing a relationship with the patient and his family. Five students clarified that being able to establish a relationship with patients, to lead them to talk about their emotions rather than their treatment, might influence their feeling of security, but being a student nurse was an obstacle. Only two students recalled that when
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they were involved in the total care of a patient they enjoyed that and felt secure in what they were doing: The nurse — she was my mentor … just told me everything about every patient … and I could speak to them … because at least I could feel that I really knew what was going on … whereas at other placements it has always been that I have not known the full story and I have always, you know, hung back without saying anything … because I have felt I could say something wrong not knowing the full story. Eight students commented that being satisfied with the job they were doing made them feel secure in their work. In addition, all of them cited feedback on their performance from patients and families as being important. It was interesting to find that none of these eight students reported receiving positive feedback from qualified nursing staff, indicating that discussion of issues relating to death and dying tended to be ignored until the last day of the placement when they received their final assessment report. A third theme related to students’ experiences of communicating with terminally ill and dying patients emerged from the first prompt question and is based on the participants’ self-report about a specific event which had a significant meaning to them. Nine students had, by chance, experiences of being with patients after they had been told by a doctor about a cancer diagnosis or about a cancer recurrence ‘in the middle of a ward round’ or ‘in the middle of the ward’, ‘it just so happened that I was there’, and some of the students found it quite a shocking experience having to answer patients’ questions afterwards because in most cases they had not been with the doctor but just close by: This man had been told that he had lung cancer and also that it had spread … I was opposite giving somebody a bed bath … so I was behind the curtains but I could hear, I mean everybody in the room could hear what was said … and after the doctor had left I was moving round to this man, he was my next task … and he did not have a clue what he had been told, he did not understand them.
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All the students had experienced being with distressed dying patients or with an upset family member. They usually found it upsetting and felt helpless towards the patient or the family. Several students gave examples where they had shared emotions with patients where there ‘was lot of kind of emotions’. One said: We were sitting chatting away … which nobody had done with her … I was nearly in tears you know … she was saying … how she felt and she was asking me ‘do I have cancer? The fourth theme identifies factors which emerged from prompt questions five and six. It presents the main factors which students recognized as obstacles when it came to communicating with terminally ill and dying patients or their families. All students who participated had had experiences of caring for terminally ill and dying patients and their families in the acute setting. All the students highlighted that there was never sufficient time within the acute general wards to sit and talk to patients. Students could recall conversations where patients expressed their gratitude because students had given them time and had been with them. This was, however, not always possible: Even nowadays there is a definite culture in the wards … if you are not running around, you know, sweat dripping off you, trying to do ten things at once … if you are not doing that then you are not working. I think it is especially for students because we are being assessed while we are there … there is a worry that if you sit down and you are talking to patients you are not actually doing something, you are not getting your hands dirty, you are not working, if you know what I mean. All the students felt that the acute setting was an inappropriate environment for terminally ill and dying cancer patients and their families and some of the students had experienced that patients had been reluctant to ask for basic things such as a commode because staff were so busy. Students highlighted the lack of privacy in the general wards as the main communication barrier and commented that they felt curtains around the patient’s bed to be of little use, one student found the lack of privacy offensive:
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I found it offensive to me … I felt it was a reflection of a standard of practice … I felt oh my goodness we had failed that family by not giving them the privacy. It kind of gave the impression that we had no respect for the patient and no respect for the family and no respect of death … but there was nothing we could do about it. The fifth theme, ways of preparing student nurses for this kind of nursing, is based on the participants’ own responses to the final prompt question. Lectures about communication and about death and dying at the university were viewed as beneficial to students (n=11). It helped the students to gain confidence in dealing with these issues. However, exactly how lecturers became useful for each individual student did vary. One student felt that when preparing students for this aspect of nursing the only way to make it useful was to have clinical supervision and support when they were actually in the placement and had to talk to dying patients. Therefore a mentor in such situations would be very useful. Two students had experienced having a mentor who discussed with them communication with terminally ill and dying patients, one while on clinical placement in the community, the other during practice in accident and emergency. The remaining 10 students had never had this benefit nor had they been encouraged by their mentors to communicate with these patients.
Discussion of study findings Lack of involvement (n=12) and lack of information (n=11) were reported frequently and were constantly reported as two intertwined issues. This study points to severe difficulties in this respect and are similar to difficulties identified by Knight and Field (1981) who found that when a breakdown of communication between health care professionals arises it is often the student nurses who suffer. The findings also mirror those of Melia (1982) which highlighted that student nurses suffer from little or no information about patients, which is largely caused by how senior staff communicate information. The students’ identification of not being part of the full picture appears to influence feelings of insecurity and dissatisfaction with the quality of
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care they provide and their communication with this group of patients. This supports findings which showed that student nurses were excluded from important decisions in the ward and that it caused them concern, especially if patients were not aware of their own condition (Franks et al. 1994). In addition, Melia (1982) found that students were worried about making mistakes and felt embarrassed if they were not put in the full picture about the patients’ total care. In both this and Melia’s (1982) study the clear indication from students was that often they did not know who knew what, who had been told what and by whom. The uncertainty the students in both studies experienced in relation to both their own knowledge and that of patients appeared to be of major concern. Findings in both these studies confirm that student nurses are asked a lot of questions by patients and families including whether the patient was going to die. Like Wilkinson (1995) and May (1993) this study found that the uncertainty experienced by the students derived from lack of information and inadequate communication down the hierarchy. One could question whether there is a connection between this little or total lack of information down the hierarchy of health care professionals and the diversity of opinions about the quality of communication in hospitals expressed by patients and families (Hilton 1993, Dennison 1996). However, students felt confident taking about patients’ imminent death if everybody knew what had been said and to whom. Such situations raise a number of dilemmas and should be considered as situations which could affect the quality of care provided by student nurses. They not only have the effect of making student nurses emotionally upset but patients and families alike could possibly experience similar feelings. Findings in this study suggest that there may be a need for restructuring the current supervision and support students are provided with while in their clinical placements. The overwhelming opinion of the students (n=11) reflect those identified by Degner and Gow (1988), in that university lectures were beneficial but in both studies the students emphasized the additional need for clinical supervision and support when they were actually there having a conversation with terminally ill or a dying patient. In this study none of the students had experienced encouragement to communicate
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with terminally ill and dying patients, neither had they experienced their mentors speaking to them about how to communicate with these patients with the exception of two students who had had positive experiences in this respect. It could be suggested that there are no ready solutions to how nurse educators can best help students to prepare themselves before they are actually in that situation. However, despite the fact that students in this study found lectures beneficial it was interesting to find that they felt it difficult to utilize their knowledge in the clinical placements. One way to enable them to utilize their knowledge might be that the teaching of communication skills could incorporate role playing teaching strategies as a means of helping to prepare the students for the types of situations they may encounter in practice.
Conclusion Fourth year undergraduate student nurses are in the final stages of their education and will be entering the nursing profession in a short time and it is to be expected that they will have encountered problems in communicating with this group of patients and their families. All the students in this study viewed communication with patients as an important part of nursing, however, deficiencies exist in relation to how students are supported and/or encouraged by their supervisors within the clinical setting with respect to the type of communication under study. Issues about death and dying tended to be ignored and discussed only in relation to students’ assessment on the ward. The literature review had revealed that in general student nurses do experience difficulty communicating with patients and their families. However, no studies were found which focused exclusively on students’ concerns about communicating with termincally ill cancer patients and their families. This small study has shown that 4th year student nurses appear to express similar concerns to those that research has shown qualified nurses express over this aspect of nursing.
Limitations of the study and future research The study involved only 12 student nurses from one educational institution, thus the findings may
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not be representative of a larger student nurse population. To investigate this problem, in addition to interviewing students, the methodology of direct observation in order to identify both students’ and their supervisors’ behaviour on wards where there are terminally ill and dying cancer patients could be useful. A larger sample would be preferable to allow generalizability, replicability and the ability to compare findings with similar groups. References Birch J A 1983 Anxiety and conflict in nurse education. In: Davis B D (ed) Research in Nurse Education. GroomHelm, Kent p26–47 Booth K, Maguire P M, Butterworth T, Hillier V F 1996 Perceived professional support and the use of blocking behaviours by hospice nurses. Journal of Advanced Nursing 24:522–527 Burnard P 1994 Searching for meaning: a method of analysing interview transcripts with a personal computer. Nurse Education Today 14:111–117 Cella D F, Mahon S M, Donovan M I 1990 Cancer recurrence as a traumatic event. Behavioral Medicine Spring: 15–21 Coolbeth L A C, Sullivan L I 1984 A study of the effects of personal and academic exposures on attitudes of nursing students towards death. Journal of Nursing Education 23(8):338–341 Corner J 1997 Beyond survival rates and side effects: cancer nursing as therapy. Cancer Nursing 20(1):3–10 Degner L F, Gow C M 1988 Evaluations of death education in nursing. Cancer Nursing 11(3):151–159 Dennison A 1996 Uncertain journey: women’s experience of living with cancer. Orkney Chronicles, Cornwall Dennision S 1995 An exploration of the communication that takes place between nurses and patients whilst cancer chemotherapy is administered. Journal of Clinical Nursing 4:227–223 Doyle D 1994 Domiciliary palliative care a guide for the primary care team. Oxford University Press, Oxford Evans A L, Payne S 1997 Light-hearted death talk in a palliative day care context. Journal of Advanced Nursing 26:1091–1097 Faulkner A 1986 Talking to patients: human interest. Nursing Times 82(33):33–34 Faulkner A 1993 Helping relatives to cope with a diagnosis of cancer in a loved one. Journal of Cancer Care 2:132–136 Field D, Kitson C 1986 Formal teaching about death and dying in UK nursing schools. Nurse Education Today 6:270–276 Franks V, Watts M, Fabricius J 1994 Interpersonal learning in groups: an investigation. Journal of Advanced Nursing 20:1162–1169 Grahn G 1996 Coping with the cancer experiences I. Developing an education and support programmed for cancer patients and their significant others. European Journal of Cancer Care 5:176–181
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