Support Care Cancer (2001) 9:625–633 DOI 10.1007/s005200100258
Susan Strang Peter Strang Britt-Marie Ternestedt
Published online: 23 June 2001 © Springer-Verlag 2001 This study was supported by Timmermansorden, Stockholm and the Cancer Foundation (Stiftelsen Jubileumsklinikens forskningsfond mot cancer) at Sahlgrenska University Hospital, Gothenburg. S. Strang (✉) Neurology Unit 15, Sahlgrenska University Hospital, 413 45 Gothenburg, Sweden e-mail:
[email protected] Tel.: +46-31-3426060 Fax: +46-31-412960 P. Strang Department of Oncology and Pathology, Karolinska Institute, Stockholms sjukhem, Mariebergsv. 22, 112 35 Stockholm, Sweden B.-M. Ternestedt Department of Nursing, University College, Ersta Sköndal, 116 91 Stockholm, Sweden
O R I G I N A L A RT I C L E
Existential support in brain tumour patients and their spouses
Abstract Caring for patients with brain tumours raises existential questions. The aims of this study were to describe the opinions of nurses, patients and next-of-kin on existential support and how this is prioritised. Patients and method: a total of 20 brain tumour patients, 16 family members and 16 nurses underwent explorative, tape-recorded, semistructured interviews about existential issues. Results: the nurses’ opinions about the importance and prioritisation of existential support could be divided into four main groups: 1) religion, 2) “a diffuse picture”, 3) conversation, and 4) questions of vital importance. They generally had a favourable attitude towards existential issues but thought those issues were difficult to deal with in practice due to lack of time, lack of knowledge and fear. Without exception,
Introduction Caring for patients with brain tumours is a difficult challenge. In addition to the fact that a malignant brain tumour is life-threatening, it also has a negative effect on intellect, emotional life and on the person himself or herself [23], irrespective of the location in the brain tumour [22]. Changes in condition are unpredictable and can occur rapidly. At present there is no curative treatment for high-grade malignant brain tumours and survival rate is very limited. This naturally constitutes a tremendous upheaval and a stressful situation for those affected. Over and above sound medical knowledge, the staff also need,
patients and family members were satisfied with the medical and physical treatment, but not with the existential support. They had, to a great extent, wished for existential support, and especially for the opportunity of talking about the existential threat that had arisen. Obstacles to this were thought to be due to the staff being under much stress, being afraid and unskilled. The importance of closeness and presence, which decreased existential isolation, was emphasised. Keywords Existential · Support · Brain tumour · Spouses
therefore, to be aware of the existential crisis such a diagnosis can produce in both patients and family members. When cure is no longer an alternative, the focus of care-related effort must move from curative to palliative care. Within palliative care, which then comes to the fore, emphasis is not only on physical, mental and social factors, but also on the importance of the existential/spiritual dimension to well-being [14, 16, 36]. This “fourth dimension” consists of both existential and spiritual aspects. All people in all phases of life have to struggle with existential and spiritual issues, but these come to a head when a person is afflicted with a severe illness, e.g. a brain tumour [1, 37]. However, giving priority to spiri-
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tual/existential issues is not a matter of course in either healthcare practice or quality of life measurements [9]. There is no uniform definition of “spiritual issues”. In the nursing literature a division can be seen between spirituality and religion. Religion comes from the Latin religio, which means to tie together, where life is bound to or is governed by a God. Religion is also a social institution that unites people around a belief and rituals [14, 31, 35]. For believers, a living faith in a God can function as an explanatory model for suffering and death, and create hope and security. “Spiritual” is derived from the Latin spiritus, which is to breathe or make living, and is ultimately a deep human dimension, irrespective of belief. It involves relationships to a higher power, to nature, to cycles and to other people [35]. Spirituality can be described as a conviction that gives meaning to life, illness and death, and that guides the individual. When discussing existential issues, existential philosophy, which sometimes, but not necessarily, contains spiritual or religious components, should also be mentioned. The leading representatives such as Kierkegaard, Sartre, Jaspers and Heidegger emphasise four existential issues with which man must struggle [40]. These issues are: 1. 2. 3. 4.
Freedom Existential isolation Meaninglessness Death
According to Sartre, among others, the individual is “doomed” to freedom, must take responsibility for his or her own life and must always make choices, which create anxiety and, in certain cases, existential guilt. Free choice has obvious consequences, both good and bad, with respect to healthcare, where the patient’s free choice is emphasised. Existential isolation is the driving force that makes us value relationships. It is also the factor that often becomes visible in healthcare, when gravely ill people are, but should not be, alone. Meaninglessness compels us to find or construct meaning in our lives. In the final phase of life, quality of life is strongly affected by the patient’s feeling of meaningfulness or meaninglessness [4]. Anxiety about death is universal and painful, but proximity to death is also the driving force that can get us to live intensively in the present, and to value life [10]. Caring for gravely ill and dying individuals places great demands on healthcare staff. Price [30] asserts that continually dealing with dying people draws on the emotional reserves of the caregiver and can lead to “spiritual exhaustion”. Vachon [38] reviewed a number of articles in this area and emphasises the importance of developing personal strategies for coping with this work. One of the most important strategies was to develop a team feeling and attitude of collaboration in the work team. Simoni
[34] found that staff members who utilised direct and active coping strategies had the lowest risk of burnout, whereas those who attempted to ignore stress-producing situations were at higher risk. Barbosa da Silva [2] stresses that life-threatening illnesses often cause conflicting feelings in the staff As their education and training is usually of a biomedical nature, death can be seen as a failure. When cure is no longer a possibility, there is “nothing left to do”. This can be very difficult for the staff to handle. Having good self-knowledge about one’s own reactions and having already worked through one’s own existential anxiety become prerequisites for being able to help dying individuals [2]. Research on the quality of life of brain tumour patients is sparse and, to the extent that it does exist, the existential dimension is mainly lacking. Some studies on patient support have been carried out, however, in which the importance of support groups has been stressed [20]. Newton describes a patient case and concludes that patient education, support groups and discussion groups can help patients overcome the uncertainty with which they are struggling [27]. Fox interviewed a number of brain tumour patients and found issues of quality of life to be extremely important when a cure could no longer be offered [6]. However, research is lacking on how, why, in what form and to what extent spiritual/existential needs should be dealt with. What priority do patients and their relatives give to existential issues, and are staff members able and willing to offer such support?
Aims The aims were to describe similarities and differences as regards: ●
●
Nurses’ opinions about the need to offer existential support in life-threatening illness and how this is prioritised Opinions of brain tumour patients and their nextofkin concerning support in existential crises
Methods Data collection Initially, pilot interviews were conducted with four patients not included in the study. In that way, it was possible to test and rework the questions and reflect on reactions of the patients at the time of the interview. The interviewees were asked both in writing and verbally if they would consent to participate. After that the interviews were carried out in the form of explorative, semi-structured interviews that were tape-recorded and transcribed almost verbatim. The interviews lasted 30–80 min and were conducted either at the patients’ homes or at the hospital. Field notes were made directly after each interview [19, 24, 29]. The interviews dealt with the nature of the existential issues for patients with brain tumours and for their family members, and the importance attached to
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those issues. Nurses were interviewed in a corresponding way focusing on their opinions of existential support and the priority it is given.
rately by two of the authors (SS and PS). After reading each transcript several times to identify sentences, phrases and anecdotes relevant to the study questions, the researchers discussed salient findings in order to reach a consensus.
The study group Ethics Data was collected at a university hospital in western Sweden and the study group consisted of patients with brain tumours, their family members (mainly spouses) and nurses. A total of 20 patients, 16 relatives and 16 nurses were interviewed. The nurses who were interviewed worked with the brain tumour group at the acute care hospital, both in neurology and in oncology. All nurses who participated in the study had experience with brain tumour patients but the amount of experience varied. Patients with grade II as well as grades III–IV tumours at different stages were included. Patients who were affected cognitively or mentally in such a way that the interview was rendered impossible were excluded. The ages varied from 23 to 70 years. As existential needs can probably vary greatly, we aimed at a maximum variation sampling, with respect to age, sex, ethnicity and education. The number of interviews was not determined upon beforehand and therefore the study continued until saturation was reached (i.e. until new descriptions no longer appeared) [29]. Spouses (n=14) or children (n=2) were interviewed close to the time of the respective patient’s interview. Data analysis Analysis of the data was inspired by phenomenography, a qualitative method which was developed in Sweden during the 1970s [25]. It emphasises the difference between the first order perspective, which describes how things actually are, and the second order perspective, which describes how people conceive and describe the world around them. As a scientific method, phenomenography uses the second order perspective. Today there are several variants of the methodology [8]. Regardless of variant, phenomenography is intended to describe similarities and variations in conceptions of individuals, with focus on people’s understanding of their experience of a certain phenomenon. The categorisation in this study was inspired by the seven steps of Dahlgren and Fallsberg [5] and recently described in detail elsewhere [7]. In short, the material was carefully read. Comments were made in the margins, with the researcher’s direct associations, but without any detailed strategy at this stage. Then significant statements were selected and compared in order to find sources of variation or agreement. Answers in the same area of interest were put together, based on the previous comparison and questioning. The statements within respective preliminary groups were critically analysed and compared in order to find the central content within each group of answers. Finally, the constructed categories were compared with each other. Data analysis focused on identification of key variables contributing to the meaning and impact of spiritual/existential support, to the obstacles to getting/giving it, and to how it affects the person. As three different groups of respondents were approached (patients, next-of-kin and nurses) data were also structured and summarised using a cross-case analysis technique [26] and presented in a content-analytic summary table. Trustworthiness A dialogical validation [24] was made with the respondents to ensure their genuine perception by addressing similar questions several times during the interview,. A dialogical intersubjectivity was used [19] according to which the transcripts were analysed sepa-
The interviewer was not the nurse providing care. As existential issues are deeply personal, the ethics involved were thoroughly discussed with the Ethics Committee and the authors’ research group prior to starting the study. The study is in compliance with and was approved by the regional Ethics Committee.
Results Nurses Description and importance of spiritual/existential support Nurses’ opinions on the importance and the prioritisation of existential support varied from never having reflected on this before the interview to considering existential support to be the most central factor in nursing. Four main themes emerged from nurses’ descriptions of what existential support dealt with: 1. 2. 3. 4.
Religion “A diffuse picture” Conversation Questions of vital importance
See also Table 1. Religion The spontaneous general opinion among the nurses was that existential support dealt with religious issues such as conversations with a clergyman, prayers and Holy Communion. The nurse’s task was to respect patients’ rituals and customs and not prevent them from practising their beliefs. “Existential issues have to do with the person praying, maybe morning prayers or evening prayers. That you pray, I can’t say anything else.” Many thought that existential issues mainly concerned foreign patients, and that Swedes were seldom expected to have specific spiritual needs. Furthermore, it was not a matter of course to offer support from the hospital chapel except when a patient explicitly requested it, which was clearly very rare. On the other hand, nurses could envisage directing patients to an almoner, psychologist or doctor for existential conversation if the need arose. “Well, it’s that if you practise a religion you should still be able to do so, if you have rituals or want a clergyman
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Table 1 Definitions of existential support and obstacles to existential support according to nurses, patients and relatives Nurses
Patients
Relatives
Definitions of existential support
1. Religion 2. Diffuse picture 3. Conversation 4. Questions of vital importance
1. Conversation – about the existential threat 2. Comfort 3. Holistic way of thinking 4. Being seen
1. Conversation – about the chaos 2. Information 3. Presence of the staff 4. Being seen
Obstacles to existential support
1. Lack of time 2. Not included in the nurse’s duties 3. Nurses lack knowledge, their own existential base, guidance 4. The work is draining
1. Staff are under stress 2. Patient feels in the way 3. Staff lack knowledge
1. Lack of holistic view 2. Fears that staff have 3. Lack of time
or lay welfare worker. When there are foreign patients it’s so easy to ask about religion, but Swedes aren’t often that interested. You usually don’t ask them.”
A diffuse picture The second prominent characteristic was that there was a clear awareness about psychosocial support, although many had a diffuse conception of what was involved in spiritual/existential needs. They could be placed on a par with mental needs, feeling good, receiving support with practical tasks, security, something generally good, terminal care etc. Others stated clearly that they had never reflected on this issue and therefore had no words to explain spiritual/existential needs, but suggested that they could involve giving good advice, letting the patient talk, or offering an opportunity of conversation with the doctor or almoner. An obvious pattern was for new nurses to have more difficulty seeing spiritual needs because they were fully occupied with ordinary routines. “I’ve never thought about anything spiritual, I mean there’s a lot mentally. Of course you can ask how they’re feeling, you try to help them with practical things, or talk with the almoner. Sometimes they say that they don’t sleep at night, or something like that.” Conversation A general opinion among the nurses was that existential support meant listening to the patient. That involved being sensitive and letting the patient direct the conversation without supplying ready-made answers. The conversation should be held at “the right level”, meaning a person-to-person conversation that was not of a therapeutic nature. If therapeutic needs arose, other professional assistance had to be obtained. Three of the nurses described in more detail how the content of conversations was of an existential nature, when the emphasis was on letting the patients express their uncertainty and anxiety
about the future and talk about questions of vital importance. “Well, it’s important to help the person accept the situation that has arisen and to soothe and give crisis aid, to listen and be sensitive. Especially to listen, it’s hard to have answers. And to take them and their thoughts seriously.”
Questions of vital importance A small group thought existential issues had to do with life and death, principles of life, questions of “why?” or “is there any meaning?”, the soul and the inner person. Offering existential support involved meeting both the patient and relatives on a deeper level, taking into account the vulnerable position of the people involved and trying to understand their suffering. Since the patients suffered from life-threatening illnesses, important elements were to show sympathy, acknowledge the patient’s anxiety, provide hope and comfort, and help the patient and relatives accept the death process.
Obstacles to existential support according to nurses Many thought it was of extreme importance to support patients and relatives in the existential crisis that had arisen. A lack of time was reported to be the reason this happened so rarely. This was why nurses did not dare to begin a supportive conversation; they were unable to complete such a conversation because practical routines consumed all their time. Some thought that existential support was not included in a nurse’s duties. One nurse thought that existential conversations were a luxury activity and that they should not take place at a hospital. Some pointed out that patients seldom raise existential issues because they come to the hospital for cure and treatment. One nurse thought that some patients “just whine” simply to get attention, but that listening and being with the patient could sometimes be justified anyway.
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“The patients are fantastic because they don’t ask any questions...” A general opinion was that many nurses lacked knowledge about existential issues and were therefore unwilling or unable to talk about existential or religious matters. “I feel that this matter of existential issues is extremely important but we, as caregivers, are inadequate. It’s not that common that you’ve reflected about yourself and your relationship to life and death. We aren’t used to talking about difficult things, despite the fact that we work with gravely ill patients.” Many were deeply affected emotionally by working with gravely ill people, especially when children or young families were involved. It was easy to have problems with identification and to be infected by patients’ terror concerning approaching death. Many nurses confirmed that they lacked an existential base of their own and felt insecure about how to deal with people in an existential crisis. Working in the proximity of death awakened feelings of fear, anxiety, powerlessness and inadequacy. Because of this they had difficulty offering existential support and, instead, played a waiting game with the patient. “Well, I thought it was just horrible. The patient was admitted for dizziness and then suddenly found out he had an incurable tumour. I felt so cold, it was so painful. My God, what a horrible diagnosis! I really wanted to support him but he didn’t want that, it was a very charged situation.” The lack of guidance and education concerning these difficult issues also contributed to the fact that nurses dissociated themselves from the patients. It was easy to accumulate too much human suffering and then to take these feelings home, which made their work burdensome and draining. “It was terrifying for me when the patient died. When I got home I cried for 2–3 hours. I felt that it created such anxiety and we didn’t do anything about it at work... Why should I escape? Will I be the one who’s stricken next time?” At the same time as experiencing the work with gravely ill patients as burdensome, many nurses felt an extreme sense of gratitude and stimulation from their work. Many had re-evaluated their own lives as a result of their contact with gravely ill people. They had learned to see and appreciate what is important in life, to think about the meaning of life and to value their own immediate family and other close relatives. “This work raises questions and also causes me to think about my own life; how I live my own life. I value my family very highly after having worked here so long. What’s most important is that you’re together and feel good.”
Patients Description and importance of spiritual/existential support The patients emphasised that the answer to what is included in existential support had to do with the opportunity of talking about the existential threat that had arisen. Existential conversations could deal with getting adequate information to give them the tools for managing the threat of death, or with being able to talk about death, to sum up one’s life and to strive, to a certain extent, for acceptance. The prerequisite was that one could talk openly and trustingly with staff who were not afraid but had the courage to remain with the patient. The illness created both chaos and uncertainty, and there was a need to put into words what they were experiencing. The active presence of the staff was therefore important since their existential isolation could be decreased somewhat through being seen and acknowledged. A holistic view was emphasised by many of the patients. Some patients mentioned the need for comfort, when physical contact could be a part of that support. It could be enough for someone just to be there and to hold them when thoughts and feelings became too difficult. “Well, an overall picture is important, it’s people they’re working with. Otherwise a nurse could just as well stand there and pack sardines. They do a very fine job but there aren’t any thoughts about the poor sardine...” (40-year-old man who has had a brain tumour for 2 years) Obstacles to existential support according to patients An immediate opinion expressed by many patients was that they were satisfied with the staff in general. They thought the staff were positive, proficient and nice. Upon more in-depth questioning, however, it was found that they were surprised at the lack of support from the staff. The greatest obstacle to existential support was that the patients felt the staff were under great stress and were, therefore, also unapproachable. Patients were afraid to burden the staff with their problems; they felt sorry for the staff. The body language of the staff, the pressured existence and emphasis on medical/practical duties resulted in the patients feeling rejected and in the way. Patients did not want to “bother” the staff with their anxiety and their questions because the staff seemed to lack time, resources and interest in them, which thus meant that the patients kept their questions to themselves. Conversations with the doctor, accessibility and information were also felt to be largely in short supply, which thereby made it more difficult to work through the stressful situation and could give rise to existential anxiety. Am I going to die? What’s going to happen to my family?
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“I haven’t wanted to delay them with my questions. But you can’t complain too much because the staff have a stressful situation... I feel sorry for them...” (35-year-old man with a glioblastoma) Some patients reported a lack of competence on the part of the nursing staff as an obstacle to obtaining existential support. Patients felt it important to be able to talk about these difficult issues, but they chose not to do so. However, the nurse should be able to become aware of existential issues, offer supportive conversation and, when necessary, direct the patient to a psychologist, almoner, hospital priest or other more competent individual. “Healthcare should see that spiritual issues are handled in some way. They must do so, because body and spirit go together, so you can’t take one and not the other if you’re going to have complete care. Then I don’t know if the staff are capable of doing this or if they should pass it on to the hospital priest or psychologist.” Next-of-kin Description and importance of spiritual/existential support For most of the next-of-kin, existential support involved conversation, particularly with the doctor, in order to be able to work through their own crisis caused by their spouse’s illness. Family members needed to know what was to be expected, what they should say to the children, how things would be when or if the patient dies. This was made difficult without adequate information. Support was also based on a holistic perspective, where body and spirit are connected and where sensitivity, respect and human feelings are the most important ingredients. It should be a matter of course to take spiritual values into account in healthcare, and the initiative should lie with healthcare. “Well, I think the technical aspects have been totally correct, but not otherwise. I don’t think I would have been sick-listed so much if I’d received better support. The doctor was very nice, but he didn’t see me. I sat and cried but no one talked with me. The staff should be extremely attentive and ask patients and relatives how they are. They should ask.” Offering existential support has to do with setting priorities and with awareness. You have to take your time, see the person, not be afraid and listen to what the patient and relatives have to say. On some occasions help is needed in establishing contact with other professionals such as psychologists and almoners. “You should talk with the person in the way he or she wants to talk about it. Because actually, everyone wants to talk about it. It’s enough just to be there, to sit with
them and show that you really understand how horrible things are. That’s also a way to communicate with people, to show that you understand what a catastrophe it is and ask how the person feels and not evade the issue by talking about something totally different.” (40-year-old relative)
Obstacles to existential support according to family members Many family members had not expected support with existential issues, but were satisfied that the staff devoted their energy to curing and operating and concerned themselves only with medically-related duties. On the other hand, family members who had wished for support concerning existential issues were extremely upset at the lack of it. That there was no existential support on the ward was thought to be due to the following reasons. A prevalent opinion was that the staff have received education in medical and technical areas and therefore easily forget how the patient and relatives feel. The staff lack a holistic view, and sometimes people are looked upon as being almost without spirituality. “They don’t have that overall view. They rely all the time on technology. If the test results are good, then you’re good and then the patient is healthy.” Some relatives reported that they had suffered from depression after their spouse’s diagnosis and they asserted that the depression was a direct consequence of the fact that nobody had talked with them in this situation of life and death. Instead, the relatives had been rejected and felt they were in the way, and the staff did not seem to understand that the relatives’ lives had also been shaken to their foundations by the threat of death in the family. “If I’d been able to talk with someone then, then I wouldn’t have had any depression at all. No, no one asked any questions about anything. Nobody at all asked if I wanted to talk.” (35-year-old man). It was perceived that the staff have their own anxiety that has not been resolved, which makes the staff unable to deal with gravely ill patients. This causes them to talk about technical factors, and they do not dare to pause. Training in handling crises is lacking, as is guidance. “When the staff realise there is a gravely ill patient in the room, they all act differently, they’re so afraid. This makes the person feel as if they’re a bother. I remember that everyday my wife said, ‘we’ll go home, because I’m nothing but a bother’. She said that constantly.” (50-year-old man whose wife died several weeks after she had said this) There was a general perception that there is a fast, intense tempo at the hospital. Poor staffing and overwork
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result in the situation where staff do not have time for their duties. This rubs off on the patients and relatives, who therefore avoid asking questions for as long as possible. Many felt sorry for the staff.
Discussion The study showed that nurses seldom reflected on existential support and therefore did not have a clear picture of what it involved. The lack of awareness emerges, for example, when an experienced nurse states that patients who never ask any questions are so fantastic. The fact that the majority of nurses gave existential support a religious meaning can explain in part why this issue was not given priority. In a secular country like Sweden, few (about 5%) practise their religion, and in this respect nurses are no exception [13]. This is very much different from the situation in the USA, for example, where King and Bushwick reported that 48% of hospital inpatients wanted their physicians to pray with them [15]. If existential support (in a secularised society) is merely conceived as religious rites which one neither shares nor understands, it is not surprising if one has difficulty seeing the point of spiritual/existential support. Despite this, the staff pursued the “right things” many times, even if the description lacked awareness. The importance of closeness and presence was emphasised, which may decrease the feeling of existential isolation. Furthermore, there was an ambition on the part of some nurses to give patients the opportunity for conversation and information, which increases the patient’s manageability and sense of control, and which in turn could reduce anxiety. Many nurses did not think that providing support in spiritual/existential crises was included in their duties, while such a duty was taken for granted by the majority of patients and relatives, many of whom had wished to talk with the staff about these issues. This is in agreement with a recently published pilot study in which nine of ten cancer patients in a terminal stage had wanted to talk about existential/religious issues with their oncologist, while the oncologists themselves were somewhat hesitant [28]. Without exception, the medical and physical treatment was felt to be satisfactory, but this was not the case for existential support. Being afflicted with a life-threatening illness means that one must seriously confront inevitable death. Existential philosophers maintain that there is nothing that causes a person to experience existential isolation to such a great extent as the proximity of that person’s own death [40]. Even if brain tumour patients seldom express death anxiety explicitly, it is still prevalent in this patient group, although it is expressed in contradictory forms, strong emotional reactions and denial [1]. When, as a patient or relative, one
experiences that one’s needs are not met and one is not even seen, the feeling of isolation is accentuated [40] Why was it that patients and family members did not get the support they needed? This can be due to the difficulty of delivering bad news, to stress, and to the feeling of inadequacy on the part of the staff, as well as their lack of knowledge and their own fears, or because of the particular care culture. Next-of-kin, in particular, experienced difficulties in working through the chaotic situation due to insufficient information and sympathy from the doctor. The fact that it is difficult to deliver bad news is well known. Ptacek analysed 67 articles dealing with the breaking bad news; it was found that doctors have their own fears and uneasiness when faced with breaking bad news [32]. This fear creates insecurity both in patients and relatives. Ptacek’s review is summarised with some concrete advice, including how to support the family emotionally and how to maintain hope even in hopeless cases. Family members and patients requested this emotional support because the lack of information delivered with empathy made it more difficult to resolve the existential crisis. Repeated information is essential in order to make the situation comprehensible and manageable and to increase the well-being and sense of coherence of tumour patients [37]. Patients, relatives and staff all clearly experienced a lack of time. A young dying woman with a brain tumour asked her husband to take her home from the hospital as she did not want to be in the way of the staff who had so much to do. One must ask what this is really all about. All staff have a certain amount of work time and how that time is allocated is a matter of prioritisation, both for the individual caregiver and the care culture in question. The fact that existential needs were not prioritised can to some extent be due to a lack of time. Another probable reason is the fear that staff have in the face of suffering and death and their inadequate knowledge about people’s existential needs. Working with gravely ill and dying patients is draining in terms of the capacity of the staff. To protect themselves from emotional burnout, it is not surprising that staff try to keep a certain distance from patients and the patients’ relatives. The support and guidance that the staff get in the demanding work involved in palliative care can be a decisive factor in being able to support patients and their relatives [30]. Indeed, a theoretical understanding of spiritual needs and its impact on well-being and health has emerged in recent decades [12, 15, 17, 21]. A number of nursing researchers have shown that this is seldom practised, however [3, 11, 33]. In a study of oncologists and oncology nurses it was found that 37% and 47%, respectively, felt that they themselves were responsible for meeting patients’ spiritual needs. In practice, when spiritual needs were weighed against other needs such as financial needs, physical status and depression, only 11% and 8%,
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respectively, thought that spiritual needs had high priority in the care of gravely ill patients [18]. When many nurses in the present study felt uncertain about the meaning of existential support and whether it is included in their duties, it is hardly surprising that existential needs are not provided for. When the prevailing culture of acute care promotes a purely medical way of thinking at the expense of other needs, it is not surprising that the staff carry out duty-orientated functions where existential issues have no place [2]. Watson [39] describes another point of departure, where existential issues are conceived as central and as the basis of all nursing care. The aim of nursing should be to support the individual in attaining greater harmony in spirit, body and soul, and to contribute so that the patient can find meaning to his or her existence and discover inner strength and opportunities for self-healing and transcendence [39]. This view was shared by the nurses in this study who stressed the importance of existential support. They therefore did not think of existential support as “extra work”, but as something that encompassed everything they did, i.e. their approach.
Conclusion The individual has the greatest responsibility for his or her own life. However, healthcare has a situation-dependent responsibility as it is often in charge of gravely ill and dying people. Staff should be able to strengthen the patient’s awareness of meaning, to identify existential crises, to deal with those crises themselves in some cases, and also to know when it is time to call for expert assistance such as from the hospital chapel. In order to maintain as good a quality of life as possible and to increase well-being, it is important that we do not medicalise existential issues but instead that we deal with them and provide the support the patient needs. Through knowledge, guidance and education, which can lead to a change in care culture in the long term, it will be easier to deal with gravely ill and dying people and to offer care that embraces the whole person, where existential needs are also taken into account. Acknowledgements Jane Wiegertz is acknowledged for the linguistic revision.
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