Article
Ethical challenges when caring for dying children
Nursing Ethics 2015, Vol. 22(2) 176–187 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014533234 nej.sagepub.com
Lovisa Furingsten Dalarna University, Sweden
Reet Sjo¨gren Retired, Ma¨lardalen University and Linnaeus University, Sweden
Maria Forsner Dalarna University, Sweden
Abstract Background: Caring for dying children presents special challenges, according to the children themselves, their relatives and healthcare professionals. Objective: The aim of this study was to describe caring as represented in healthcare workers’ experiences of caring for dying children. Method: A phenomenological approach was chosen, in-depth interviews were carried out and data were analysed in four steps focusing on (a) open reading, (b) meaning units, (c) constituents and (d) essence. Ethical considerations: Four nurses in a general acute paediatric care setting in Sweden participated after providing written informed consent. Voluntary participation and confidentiality were ensured, and the study was ethically approved. Findings: The essence of caring for dying children was likened to a musically attuned composition, comprising five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. Presence was found to be a prerequisite for caring when a child is dying. Self-knowledge and support from others can be of help when struggling with emotional pain and injustice. Discussion: Caring for dying children has been found to be a delicate task for healthcare workers all over the world, and the ethical dimension is emphasized in international research. In this study, emotional pain and suffering accompanied caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient’s needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Conclusion: Caring in ethically demanding situations may be facilitated through presence, atmosphere, self-knowledge and time. The challenge does not demand highly technological solutions; these assets are readily available, no matter where on earth. However, there is a need to further investigate these prerequisites for caring, particularly when a child is dying. Keywords Caring, dying child, ethical demands, healthcare workers’ experiences, phenomenology
Corresponding author: Lovisa Furingsten, School of Education, Health and Social Studies, Dalarna University, SE-791 88 Falun, Sweden. Email: [email protected]
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Introduction Caring for dying children is complex and ethically demanding.1 Caring is about not only ‘doing’,2 that is, treating, alleviating, facilitating, promoting and preventing,3 but also ‘being’/‘being with’ and ‘becoming’2,4 – all this in love and compassion.4,5 One of many distinct differences between caring for dying children compared to adult patients is that the parents are natural caregivers and legal guardians with the responsibility for decisions regarding the child’s care.6 Parents, close relatives and healthcare workers (HCWs) are engaged in the care of the child side by side – the former by their close bonds to the child, the latter through employment.7,8 Roles alternate over time between parents and HCWs,7 and the transition process from curative to palliative care raises confusion, especially for parents, regarding responsibility.9 They need to be included in the decision-making and in honest relationships with the HCWs.10 Participating in the care, being physically present and close to the child, has been found to be of utmost importance for the parents’ wellbeing.11 Although long-term hospitalization engenders a special relationship between the family, the child and the paediatric nurse, it can also give rise to frustration and guilt for the nurse.7,8 Differences in life circumstances between paediatric intensive care nurses and families have resulted in cultural clashes, causing discomfort for nurses.12 Additionally, conflicts between parents and HCWs about end-of-life decisions are taxing.8,13 Both physicians and registered nurses have described emotional pain and lack of time as ethically demanding in paediatric care.14–17 Painful treatments and families’ emotional burdens have been linked to nurses’ burnout combined with compassion fatigue,18 and caring for a child who could not recover reportedly brought suffering.19 Occupational stress in children’s palliative care occurs regardless of location,1 both in cancer care20 and neonatal intensive care,21 but combining work with patients in both curative and palliative phases seems to be particularly challenging.22 The needs of a dying child depend inter alia on the child’s developmental stage. Nevertheless, regardless of age, fundamental physical, psychological and spiritual needs require attention.23 Children with life-limiting conditions are often cared for at home,24 but hospices, hospitals and schools are other settings of importance.6,25,26 Sometimes, dying children are cared for in intensive care units and acute wards. These units are often ill prepared to deal with the death of a child and can fail in readiness to care for dying children and their families.11,21,25,27 In summary, palliative paediatric care has been found demanding, not least for the HCWs, particularly when caring for dying children in units not specialized to their needs. Consequently, there is a need to further investigate HCWs’ experiences of caring for dying children in the specific context of general paediatric care units whose main focus is short-term illness and acute curative care.
Aim The aim of this study was to describe caring as represented in HCWs’ experiences of caring for dying children in a general, acute paediatric care setting.
Method A phenomenological approach28,29 was chosen, with the overlying principle of openness to the informants’ lived experiences.
Participants Registered and unregistered nurses in one acute paediatric ward in a larger city in Sweden were invited to join the study. The inclusion criterion was that the caregiver, in the last 5 years, had taken care of at least one 177
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dying child in the context of an acute paediatric ward providing care for children from 0 to 18 years of age. Two registered nurses and two paediatric nurse assistants joined the study.
Data collection To reach the unreflected natural position of the respondents, the first author collected data using qualitative in-depth interviews, starting with one opening phrase, ‘Tell me your thoughts about and experiences of caring for a dying child’, and continuing with follow-up questions consistent with responsive listening. The recorded interviews lasted 30–60 min and were transcribed verbatim.
Analysis Four steps following Giorgi and Giorgi28 guided the analysis. The first step was an open reading to capture the global sense, listening to and reading the interviews several times. The second step involved searching for meaning units; important words, expressions and emotions were noted, and as the process continued, various meaning units appeared. The third step was a transformation from implicit meaning to explicit constituents. The meaning units gradually grew into different patterns, the constituents. Finally, in the fourth step, the analysis intended to gain a general structure of the phenomenon, the essence, formed by synthesizing the analysis of the essential meaning of the phenomenon. In the quotations, the sign ‘//’ indicates a break in the text, and ‘ . . . ’ shows a pause. To ensure confidentiality, children are randomly called he and him or she and her, when informants talk about a specific child.
Ethical considerations Possible risks connected with the study were considered minor compared to the benefit. Although it can be upsetting to revive memories from distressing caring situations, it can also be beneficial to have the opportunity to be listened to and confirmed. The phenomenological emphasis on openness characterized the approach during the interviews, making room for the participants’ own memories and reflections. Written information about the study specified its voluntary and confidential nature, and written informed consents were obtained. The University of Va¨xjo¨, Sweden, gave ethical approval, and the head of the clinic concerned gave permission to conduct the study.
Findings From the synthesizing of the analysis, the essence of caring for dying children in an acute paediatric care unit is presented in the following metaphor: Caring for dying children is like a musically attuned composition. The ‘conductor’ depends on the ‘orchestra’ and takes responsibility for the ‘composition’, so the music can reach the dying child. The atmosphere is distinguished by compassion, trust, perceptivity, courage, and respect. The moments are fragile and could easily be disrupted and turn into disharmony. The ‘conductor’ moves carefully, uses knowledge, is flexible, and struggles to be true, sensitive, and in tune with the ‘orchestra’. When the child gets out of reach of the ‘composition’, it feels unfair that the child could not enjoy the music, anymore.
As a result of the analysis, the explicit meaning of caring for dying children was formulated in five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. 178
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Presence An atmosphere of presence, an approach of awareness and responsiveness, was mediated as important for caring: You might be a bit more cautious. // It’s not that I’m not insensitive to other children, but, like, I might be a bit more sensitive . . . // For example // there’s a lot to do and I have to give antibiotics to many patients, and then I get into a room where there’s a child // in the final stage of life, and I see that the parents aren’t at all prepared to let me in. They want to be by themselves, and don’t want to be disturbed. // Then I can back off a little, thinking that I can bring that antibiotic an hour later. But if I entered a room with another child who’s staying there (in the ward) just for a short time, having a short antibiotic treatment, I think I would be a bit pushier, saying that I am supposed to take care of your child, [and] could you please change that diaper later, or something like that. So, I’m a bit more patient . . . // Well, eh, I guess that’s because they have a hard enough time.
The carer’s approach transformed to a ‘softer’ and ‘gentler’ touch. To keep out the stress from the surrounding ward, it was important to wind down and enter the room peacefully. A balance in the relationship with the dying child, between confirmation and boundaries, characterized presence: Like what a child stated one time when I was about to take a sample and he called me: ‘I don’t want to, you poop’, he said , yes, and I said: ‘It doesn’t matter if you think I’m a poop or not’, I said, ‘We still have to . . . ’
Presence was broadened and deepened through mutual trust. Essential in the relation was to focus on ‘the lifeworld’ of the dying child, as when the child’s ‘joie de vivre’ spilled over to the HCW, facilitating presence in the caring situation: Yes, I was so happy in a way. She did look like a little troll when she was jumping around in that corridor. // Well, I thought, Oh, how nice to see that she still has some kind of happiness and shows it. // Then one day later she died. Yes . . . it was like . . . well, kind of, the memory I still have is this, when she’s jumping around in that corridor and was so happy.
Own needs were put aside, to promote presence It felt so good to do all this, and dinner was not on my mind. It was more important to be with this little girl. // Had she not been so terribly ill, I wouldn’t have been in there so much with her, I wouldn’t have . . .
and altruism evoked: At times we are pulling in beds so that we can hardly get around them, but we do it for their sake and it feels good that we can do that.
Presence depended on an honest relationship with those involved, requiring courage to involve and support the immediate family, as well as to set limits. Sometimes, the participants even had to go against their own convictions in meeting the families’ wishes. Patience, tact and flexibility were vital, waiting for the right moment to reach the dying child: Sometimes it can be harder not to make the bed than to do it; that’s a fact, so you have to accept the situation nicely. You can’t just move on, // because it was their wish, it was the mother’s wish. 179
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Caring for a dying child was about seeing and allowing, making room for all those who together shared the presence. Besides providing space for the dying child himself or herself, participants highlighted the emotional needs of the relatives, the importance of allowing them to safely show and express their feelings: You try to make the parents feel comfortable and that they, so to speak – like, there’s nothing wrong with crying. It’s OK to cry and to show emotions, it’s OK to be sad, it’s just natural. It is // well, I’ve also been standing in a room when . . . and I’ve also been crying myself. I don’t think anyone gets upset about that, not even the parents.
Presence meant to be courageous, to be honest and to show one’s own feelings, but was simultaneously characterized by caution, not disturbing their own relations with the family or interfering in relationships between the parent and child.
Self-knowledge The participants expressed the importance of being aware of their own needs, strengths and limitations; processing their own fear of death brought both personal and professional growth. To support the parents, they had to balance their own emotional expressions. Sometimes, it felt right to cry; sometimes, the heavy burden was about carrying on alone inside, without becoming insensitive. The unique and unpredictable meeting with the dying child and family brought humility You’ll never get used to taking care of someone dying, because none of them is like the other one, not the family situation, or the child’s age, or the relation to the deadly disease.
as well as having to admit shortcomings, to both parents and colleagues: I don’t know the answer to this one, but I’ll try to find out.
Recognizing one’s own limitations accentuated support from colleagues: At the start of my work here we had a child with (a particular disease) and it was really hard for me to walk into the room of this child, but I talked about it, so I, like, I took another (colleague) with me because I thought: I’m, like, going to start wailing when I walk in there, because I was, like, kind of feeling, it was so much. I had so many flashbacks when I saw this child.
Self-esteem was strengthened by ‘some form of supervision’ and awareness of own resources emerged when reflecting over how hard shifts had been managed: It feels good indeed to walk home when you know that you’ve done everything you can do – that there’s nothing more you can do. And make them healthy, well, I can’t do that, but I’ve done . . . to make it easier for them . . . yes, I have to put in more effort and change the beds more often and empty the wastebaskets and this that you’re kind of responsible for the nursing around the clock. // Those shifts give a good feeling indeed.
Self-knowledge was shown in being aware of the risk of favouring some families: It’s easier, though, to do more for those who appreciate it // but // there you have to reconsider and show your professionalism, trying to be equally helpful to everyone. 180
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Injustice in dying The process of a child’s dying seemed unfair and difficult to reconcile. Participants felt it unfair that a child’s life should end so soon: It’s always harder when a child dies than if an adult dies. // I think it’s so unfair. Life ends so fast. They haven’t been here for so long. I could wish that every person could live a little bit longer, particularly the children.
A sense of injustice was experienced when previously healthy children suddenly turned out to be severely ill and dying. Instead, it was expressed that healthy children ought to live a long life. Known, existing, lifeshortening conditions were experienced as easier to accept: At an emergency ward for children it’s // not quite as acceptable to die. // Well, for severely handicapped children, when you already expect from birth that the child will not reach adult age, then it’s more accepted // – for everyone, for the parents and, well, for the medical staff. Yes, in most cases, I think so. You already know that it’s going to happen and have been living with that fact for a long . . . but when a child in full health is taken ill, then the situation turns completely different. // Healthy children should live into old age.
In a field focused on curing, death was unaccustomed and difficult to respond to It feels unusual, because you work in the medical field to get everyone in good health, but, unfortunately, it’s not like that with everyone and that . . . Actually, we should maybe talk more about it, because it is so unusual to talk about these conditions, about death, and – what will happen next?
and when the dying child brought up death, things came to a head: ‘Then I die!’ . . . [Informant renders the words of the child.] ‘Yes’, I said, ‘if (the organ) doesn’t work, then . . . then that’s what happens’. I had a hard time saying: ‘Yes, then you die’. I couldn’t make myself do it.
The injustice felt towards dying awoke miserable feelings; however, the participants attempted to find meaning and explanation by gaining knowledge about the disease and degradation process, and furthermore, to appreciate the child’s short life for its own sake: I tend to tell myself that maybe there’s some kind of meaning in the fact that this child will . . . during her/his short life, make the parents see things in another light.
Moreover, in faith, mourning could be appreciated as valuable in itself, putting death beyond meaning, explanations and understanding: It’s not always that you’ll understand what’s happening, and maybe it’s not meant for us to understand it anyhow, but . . . sometimes things happen that are terrible, and you’ll have to try to reconcile yourself to them, and try . . . It’s important to mourn, and to get help to mourn, if you feel you can’t manage on your own.
Own suffering The participants expressed feelings of sadness when caring for a dying child, finding this early death meaningless. Furthermore, feelings of inadequacy evoked emotional pain. Lack of time affected the possibility for calmness, quiet and peace, hindering them from dealing with existential questions and preparation for death. Lack of time for reflection created dissatisfaction and frustration: 181
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What I kind of miss, particularly at the acute ward, is giving a sense of safety, peace, and time to talk and ask questions, or just sit down and be silent together. Eh, that kind of time isn’t there. // I guess, that’s when I feel this frustration, that I’m not . . . My nursing work doesn’t measure up to what I wanted to achieve.
When a child was dying, it was considered ideal to offer a beautiful, peaceful and harmonious environment. However, instead of continuity, the dying children met a variety of caregivers, and preparation prior to procedures was not always fulfilled. The tensions between knowledge and the ‘complex reality’ created frustration, and to some extent guilt, when having a desire to do more for the dying child than was possible. Moreover, it hurt knowing more about the child’s condition than could be revealed: It was a horrible feeling, just to . . . but I tried to be very careful, not to give any false hope, and I would only listen. // I tried to stay calm, but it was tough, it was extremely tough. Just that feeling that I knew more than I had told them.
Emotional pain emerged in conflicts between what was experienced as the right thing to do and what was prescribed: I felt like: You can’t do that, I thought. It didn’t feel natural. // . . . I got along well with the doctor. He said like this: ‘We do this in order to calm the parent down’ . . . but it was not necessary. For me, it didn’t feel quite OK to do what was not necessary. Maybe I was foolish and maybe I should have accepted an attempt to give . . . ? But, when I handed out that [medicine], it didn’t feel all right.
It was painful not being able to fully share the presence, but rather being distanced from the child: I was never allowed to see that child naked. I could never see if he had any wounds. I was never allowed to see him. I didn’t know, I could only guess. I never knew what he looked like, how his body was functioning. // I wanted to see his body, so . . . yeah, so I knew if he had some big wounds and if they were healing. I knew nothin’ . . . No, but [the parent] didn’t want me to unwrap his . . . and when he was naked in the shower [the parent] was there. We were never allowed to come in and see. // But it was their wish, it was [the parent’s] wish. Then you sort of have to adjust and compromise.
When the child’s dying process was denied by the parents’ hindering influence on the caring situation, a sense of powerlessness emerged; openness and presence were replaced by a feeling of being ‘shut out’: You were not allowed to do your best . . . You had to refrain.
After the child’s death, emptiness ‘like a vacuum’ was experienced, in relation both to the child and to the parents: Yes, it feels a bit like, having had a child, cared for a child, for a long time, you would have liked to, how awful that ever might sound, have been there when the child passed away, to kind of say goodbye . . . // Because you have made contact in a sense, you have been so close to the parent. You never get used to a child dying.
Emptiness also occurred when there was no chance to take farewell. The relationship was unfinished, and respondents expressed having difficulty adjusting: It felt awkward. // There I had some trouble: ‘Oh yes, he hasn’t gone home, oh no, he died’ . . . So, it took a while before I sort of came . . . could take it in. 182
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In need of others Caring for dying children awoke a need of comfort, support and relief from others. Together with colleagues, it was possible to go through the unbearable We went in together, so that [the colleague] was standing behind to support me when I asked if there was something they needed and things like that, and that was so comforting. It was so good to have my colleague by my side. // It was just that, that I felt like I was going to scream when I got into that room, but that [my colleague] kind of was standing there. I would, I said: ‘If I break down, I nudge you and you’ll take over, then I’ll go out and stand crying by the sink’. So that you had some kind of support and like, if I would be all silent, [the colleague] could kind of take over, and yet as I went in there and [the colleague] helped me so that I got over it, I could process the things from my own childhood.
and the atmosphere around the dying child was easier to endure: It’s somewhat easier [when there are two of us] to encounter and kind of carry the mood in the room.
It was highly valued to be able to share the suffering. At the end of the shift, it felt good and safe to turn over the responsibility to the following colleague, convinced that the child would not be forgotten. Representatives from other professions were helpful and supportive: ‘pain team’, ‘play therapy’ and ‘counsellor’ were mentioned. To have a supportive management was also appreciated: ‘a manager going in the same direction // as, of course, there is an added workload’. Furthermore, it was described as invaluable to have partnership and reach agreement with parents and relatives: Things get easier if you come closer to one another and you understand the language of the other.
A desire for supervision during and after a child’s death came up: I would have appreciated some kind of supervision. Like, when I felt that I didn’t do a very good job, or I might have been able to convey that differently, or I could have been able to support [the child] in some other way.
At death, it felt important to conclude the situation together, preferably across professional boundaries. Comfort appeared when others were close at hand; the opposite appeared in solitude, bringing up questioning thoughts and reflection after the child’s death about the importance of support: Maybe I already, in the time when she was living, would have had a chance to address that again, and get some support in how to express myself.
Discussion The essence of caring for dying children emerged as akin to a musically attuned composition where the ‘conductor’ took responsibility for the ‘composition’, so the music could reach the dying child. It meant tuning in to the needs of the child and the family and involving the parents as well as other HCWs when striving towards harmony. Presence appeared as prominent, and the involvement when caring for dying children in this study was similar to that expressed when caring for children with special needs in Australia,7 as well as critically ill children in Swedish intensive care.3 According to Arman and Rehnsfeldt,30 unselfish love and caring presuppose each other in a ‘presence of love’. Altruism and honesty, as well as responsiveness, were revealed in this study, similarly expressed by Younger,31 who likened responsive care to a dance, beginning with presence. Erichsen et al.32 emphasized that honesty is essential when caring for dying 183
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persons, and Kane et al.33 likewise found it important to create an atmosphere to give room for everyone involved to be both social and spiritual. Consequently, presence may fail to materialize if the caring situation is not given time, or if honesty is missing. Knowledge about one’s own strengths and weaknesses was found to empower and facilitate the managing of demanding situations. Self-knowledge was essential for caring, making room for presence as well as engagement beyond the actual task, found by Arman and Rehnsfeldt34 to be experienced as the ‘little extra’ in care. However, a bad conscience, tiredness and burnout followed when unregistered nurses in an acute ward experienced that the ‘little extra’ had to be omitted because of time limits.35 There is a fine balancing act in not ending up overinvolved, a factor found to increase the risk for burnout.7 On the contrary, acceptance of oneself – one’s limits and abilities – is an important factor in preventing burnout;36 therefore, space for personal development cannot be overestimated when caring for dying children. The injustice in dying expressed in this study might be linked to the prevailing view in Western societies that it is unnatural for a child to die, in accordance with ‘the life cycle of nature’ (p. 86),13 and the grief over a child is often long lasting and intense.37 Regardless, HCWs are challenged to cope with childhood deaths. At the same time, it might be that the feeling of injustice is a prerequisite for being compassionate towards the parents, and the management of the process around a dying child can be a way to protect HCWs against their own discomfort with death.8 As found in previous research,8,13,19,38 caring for dying children was associated with emotional pain and suffering. The interviews revealed that feelings of inadequacy and time constraints led to powerlessness and frustration. This could be compared to registered nurses feeling forced to prioritize medical routines before the needs of the child15,16 and to follow medical prescriptions, rather than providing a comfortable death20,39 – focusing on medical efforts, rather than on the patient.37 Inadequacy in pain management and lack of preparation can lead to feelings of failure as well as despair.40 Consequently, it seems that suffering follows, when HCWs feel hindered in meeting the needs of the dying child. Likewise, emotional load and ethical conflicts, consuming relationships, maintaining control in an unpredictable context and lack of support led to stress among palliative nurses in Northern Ireland.1 Moreover, combining patients in both curative and palliative phases increases stress,22 and when honesty has to be put aside, moral conflicts arise.32 In this study, feelings of forced aloofness came up when HCWs were not allowed to fully take part in the presence. Suffering arose when openness was thwarted and when HCWs had to act against their professional knowledge and inner feelings.19 The ethical dimension when caring for dying children is of great importance to consider, since conflicts about moral issues can affect not only the individual HCW but also the whole organization.41 When HCWs are absent during the moment of death, parents’ experiences are negatively affected.26 It is interesting that HCWs in this study were similarly affected with emptiness and emotional pain, when they were not present at the moment the child died. Overall, time is essential when caring for dying children, not having time to grieve could disturb the future ability to care for dying patients.22 Papadatou37 showed that HCWs’ grief was neglected in paediatric care and that their feelings had to be repressed or ignored. This study reports that feelings of emptiness – like a vacuum – occurred, when death became a fact and long relationships were broken, as well as when it was not possible to bid farewell. It seems important to keep in mind that HCWs need ‘a period of healing’7 before entering into a new relationship with a dying child. Caring for dying children awoke the need of others. Paediatric oncology nurses’ grief has been associated with stress and burnout,20 but ‘peer-supported storytelling’ helped both the storyteller and the listener to find meaning. Similarly, both support from colleagues and guidelines were reported by nurses in a neonatal intensive care unit to be helpful as facilitators for end-of-life care.21 A Swedish government report proposed continuous education and supervision for all HCWs working in palliative care, emphasizing dedicated time for reflection and the importance of interdisciplinary collaboration.42 Following these guidelines might give room for ‘presence’, regardless of where the dying child is cared for. 184
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Methodological considerations Although these findings apply to a specific context, participants’ experiences of caring for dying children in one acute paediatric ward, this perspective might shed light on and enrich the understanding of caring. In this study, experiences from both registered and unregistered nurses was sought, related to the fact that they are engaged, side by side, in the care of dying children. Although unregistered nurses have been found to have a somewhat different perspective from registered nurses on ethical problems,35,43 our intention was not to compare experiences but to enrich data. To prevent unreflected pre-understanding in the research process, an open-minded approach was sought, and questions throughout the interviews aimed at a deeper understanding of the informants’ experiences of the phenomenon. Furthermore, with the intention of describing the phenomenon at hand, data were carefully and critically reviewed during the analysing process. The analysis was discussed within the co-author group and with other researchers skilled in the method. The constituents are, in fact, intertwined, but for clarity, described separately. The essence is a result of a holistic perspective of the findings, where the constituents and the relationships among them are formulated as a metaphor. The essence is, as expressed by Giorgi and Giorgi,28 ‘not universal, but . . . general because of the role of context’ (p. 45). Quotations are presented in the results to ensure transparency.
Conclusion Caring for dying children has been found to be a delicate task for HCWs to face all over the world, and the ethical dimension is emphasized in international research. In this study, caring is described as a musically attuned composition, where presence as well as self-knowledge is emphasized. Emotional pain and suffering accompany caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient’s needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Thus, it is suggested that caring in ethically demanding situations can be facilitated through presence, atmosphere, self-knowledge and time. This challenge does not demand highly technological solutions; these assets are readily available no matter where on earth. However, since the findings in this study are associated with the context, that is, one general acute paediatric care setting in Sweden, there is a need to further investigate these prerequisites for caring when a child is dying. Acknowledgements With grateful thanks to Margaretha Ekebergh, Fredricka Gilje, Kerstin Hopstadius and Marcus Furingsten for valuable contributions. Conflict of interest The authors declare no conflicts of interest. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. McCloskey S and Taggart L. How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. Int J Palliat Nurs 2010; 16(5): 233–240. 185
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2. Ranheim A. Caring and its ethical aspects – an empirical philosophical dialogue on caring. Int J Qual Stud Health Wellbeing 2009; 4: 78–85. DOI: 10.1080/17482620902727300. 3. Mattsson J, Forsner M, Castre´n M, et al. Caring for children in pediatric intensive care units: an observation study focusing on nurses’ concerns. Nurs Ethics 2013; 20(5): 528–538. DOI: 10.1177/0969733012466000. 4. Arman M. Bearing witness: an existential position in caring. Contemp Nurse 2007; 27(1): 84–93. DOI: 10.5555/ conu.2007.27.1.84. 5. Eriksson K. Caring science in a new key. Nurs Sci Q 2002; 15: 61–65. DOI: 10.1177/089431840201500110. 6. McQuillan R and Finlay I. Facilitating the care of terminally ill children. J Pain Symptom Manage 1996; 12(5): 320–324. DOI: 10.1016/S0885-3924(96)00186-8. 7. Ford K and Turner D. Stories seldom told: paediatric nurses’ experiences of caring for hospitalized children with special needs and their families. J Adv Nurs 2001; 33(3): 288–295. DOI: 10.1046/j.1365-2648.2001.01678.x. 8. Klein SM. Moral distress in pediatric palliative care: a case study. J Pain Symptom Manage 2009; 38(1): 157–160. DOI: 10.1016/j.jpainsymman.2009.04.014. 9. Monterosso L and Kristjanson LJ. Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliat Med 2008; 22(1): 59–69. DOI: 10.1177/0269216307084608. 10. Lundqvist A, Nilstun T and Dykes AK. Both empowered and powerless: mothers’ experiences of professional care when their newborn dies. Birth 2002; 29(3): 192–199. DOI: 10.1046/j.1523-536X.2002.00187.x. 11. Rini A and Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs 2007; 22(4): 272–282. DOI: 10.1016/j.pedn.2006.08.008. 12. McKinley D and Blackford J. Nurses’ experiences of caring for culturally and linguistically diverse families when their child dies. Int J Nurs Pract 2001; 7(4): 251–256. DOI: 10.1046/j.1440-172x.2001.00288.x. 13. Morgan D. Caring for dying children: assessing the needs of the pediatric palliative care nurse. Pediatr Nurs 2009; 35(2): 86–90. 14. Sørlie V, Førde R, Lindseth A, et al. Male physicians’ narratives about being in ethically difficult care situations in paediatrics. Soc Sci Med 2001; 53(5): 657–667. DOI: 10.1016/S0277-9536(00)00368-3. 15. Sørlie V, Jansson L and Norberg A. The meaning of being in ethically difficult care situations in paediatric care as narrated by female registered nurses. Scand J Caring Sci 2003; 17(3): 285–292. DOI: 10.1046/j.1471-6712.2003. 00229.x. 16. Sørlie V, Lindseth A, Førde R, et al. The meaning of being in ethically difficult care situations in pediatrics as narrated by male registered nurses. J Pediatr Nurs 2003; 18(5): 350–357. 17. Sørlie V, Lindseth A, Ude´n G, et al. Women physicians’ narratives about being in ethically difficult care situations in paediatrics. Nurs Ethics 2000; 7(1): 47–62. DOI: 10.1177/096973300000700107. 18. Maytum JC, Heiman MB and Garwick AW. Compassion fatigue and burnout in nurses who work with children with chronic conditions and their families. J Pediatr Health Care 2004; 18: 171–179. 19. Perkin RM, Young T, Freier MC, et al. Stress and distress in pediatric nurses: lessons from Baby K. Am J Crit Care 1997; 6(3): 225–232. 20. Macpherson CF. Peer-supported storytelling for grieving pediatric oncology nurses. J Pediatr Oncol Nurs 2008; 25(3): 148–163. DOI: 10.1177/1043454208317236. 21. Wright V, Prasun MA and Hilgenberg C. Why is end-of-life care delivery sporadic? A quantitative look at the barriers to and facilitators of providing end-of-life care in the neonatal intensive care unit. Adv Neonatal Care 2011; 11(1): 29–36. DOI: 10.1097/ANC.0b013e3182085642. 22. Wallerstedt B and Andershed B. Caring for dying patients outside special palliative care settings: experiences from a nursing perspective. Scand J Caring Sci 2007; 21: 32–40. DOI: 10.1111/j.1471-6712.2007.00430.x. 23. Heilferty CM. Spiritual development and the dying child: the pediatric nurse practitioner’s role. J Pediatr Health Care 2004; 18(6): 271–275. 24. Surkan PJ, Dickman PW, Steineck G, et al. Home care of a child dying of a malignancy and parental awareness of a child’s impending death. Palliat Med 2006; 20(3): 161–169. DOI: 10.1191/0269216306pm1139oa. 186
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25. Watterson G and Hain RDW. Palliative care: moving forward. Curr Paediatr 2003; 13(3): 221–225. DOI: 10.1016/ S0957-5839(03)00002-2. 26. Kreicbergs U, Valdimarsdo´ttir U, Onelo¨v E, et al. Care-related distress: a nationwide study of parents who lost their child to cancer. J Clin Oncol 2005; 23(36): 9162–9171. DOI: 10.1200/JCO.2005.08.557. 27. Dussel V, Kreicbergs U, Hilden JM, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 2009; 37(1): 33–43. DOI: 10.1016/j.jpainsymman.2007.12.017. 28. Giorgi A and Giorgi G. Phenomenology. In: Smith JA (ed.) Qualitative psychology: a practical guide to research methods. London: Sage, 2003, pp. 25–50. 29. Dahlberg K, Drew N and Nystro¨m M. Reflective lifeworld research. Lund: Studentlitteratur, 2001. 30. Arman M and Rehnsfeldt A. The presence of love in ethical caring. Nurs Forum 2006; 41(1): 4–12. 31. Younger JB. The alienation of the sufferer. ANS Adv Nurs Sci 1995; 17(4): 53–72. 32. Erichsen E, Danielsson EH and Friedrichsen M. A phenomenological study of nurses’ understanding of honesty in palliative care. Nurs Ethics 2010; 17(1): 39–50. DOI: 10.1177/0969733009350952. 33. Kane JR, Hellsten MB and Coldsmith A. Human suffering: the need for relationship-based research in pediatric end-of-life care. J Pediatr Oncol Nurs 2004; 21(3): 180–185. DOI: 10.1177/1043454204264393. 34. Arman M and Rehnsfeldt A. The ‘little extra’ that alleviates suffering. Nurs Ethics 2007; 14(3): 372–386. DOI: 10. 1177/0969733007075877. 35. Sørlie V, Kihlgren AL and Kihlgren M. Meeting ethical challenges in acute care work as narrated by enrolled nurses. Nurs Ethics 2004; 11(2): 179–188. DOI: 10.1191/0969733004ne682oa. 36. Gustafsson G and Strandberg G. Meanings of staying healthy in a context where others developed burnout – phenomenological-hermeneutic interpretation of healthcare personnel’s narratives. Scand J Caring Sci 2009; 23(3): 456–464. DOI: 10.1111/j.1471-6712.2008.00641.x. 37. Papadatou D. Training health professionals in caring for dying children and grieving families. Death Stud 1997; 21(6): 575–600. DOI: 10.1080/074811897201787. 38. Klick JC and Hauer J. Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 2010; 40(6): 120–151. DOI: 10.1016/j.cppeds.2010.05.001. ¨ zden D, Karago¨zoglu S and Yildirim G. Intensive care nurses’ perception of futility: job satisfaction and burnout 39. O dimensions. Nurs Ethics 2013; 20(4): 436–447. DOI: 10.1177/0969733012466002. 40. Contro NA, Larson J, Scofield S, et al. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004; 114(5): 1248–1252. 41. Wlodarczyk D and Lazarewicz M. Frequency and burden with ethical conflicts and burnout in nurses. Nurs Ethics 2011; 18(6): 847–861. DOI: 10.1177/0969733011408053. 42. Socialdepartementet [Ministry of Health and Social Affairs]. Do¨den anga˚r oss alla: va¨rdig va˚rd vid livets slut – slutbeta¨nkande [Death affects us all: dignified care at the end of life – final report]. SOU 2001:6. Stockholm: Socialdepartementet [Ministry of Health and Social Affairs], 2001, http://www.regeringen.se/sb/d/108/a/2782 43. So¨derberg A and Norberg A. Intensive care: situations of ethical difficulty. J Adv Nurs 1993; 18(12): 2008–2014. DOI: 10.1046/j.1365-2648.1993.18122008.x.
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Ethical challenges when caring for dying children
Nursing Ethics 2015, Vol. 22(2) 176–187 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014533234 nej.sagepub.com
Lovisa Furingsten Dalarna University, Sweden
Reet Sjo¨gren Retired, Ma¨lardalen University and Linnaeus University, Sweden
Maria Forsner Dalarna University, Sweden
Abstract Background: Caring for dying children presents special challenges, according to the children themselves, their relatives and healthcare professionals. Objective: The aim of this study was to describe caring as represented in healthcare workers’ experiences of caring for dying children. Method: A phenomenological approach was chosen, in-depth interviews were carried out and data were analysed in four steps focusing on (a) open reading, (b) meaning units, (c) constituents and (d) essence. Ethical considerations: Four nurses in a general acute paediatric care setting in Sweden participated after providing written informed consent. Voluntary participation and confidentiality were ensured, and the study was ethically approved. Findings: The essence of caring for dying children was likened to a musically attuned composition, comprising five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. Presence was found to be a prerequisite for caring when a child is dying. Self-knowledge and support from others can be of help when struggling with emotional pain and injustice. Discussion: Caring for dying children has been found to be a delicate task for healthcare workers all over the world, and the ethical dimension is emphasized in international research. In this study, emotional pain and suffering accompanied caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient’s needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Conclusion: Caring in ethically demanding situations may be facilitated through presence, atmosphere, self-knowledge and time. The challenge does not demand highly technological solutions; these assets are readily available, no matter where on earth. However, there is a need to further investigate these prerequisites for caring, particularly when a child is dying. Keywords Caring, dying child, ethical demands, healthcare workers’ experiences, phenomenology
Corresponding author: Lovisa Furingsten, School of Education, Health and Social Studies, Dalarna University, SE-791 88 Falun, Sweden. Email: [email protected]
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Introduction Caring for dying children is complex and ethically demanding.1 Caring is about not only ‘doing’,2 that is, treating, alleviating, facilitating, promoting and preventing,3 but also ‘being’/‘being with’ and ‘becoming’2,4 – all this in love and compassion.4,5 One of many distinct differences between caring for dying children compared to adult patients is that the parents are natural caregivers and legal guardians with the responsibility for decisions regarding the child’s care.6 Parents, close relatives and healthcare workers (HCWs) are engaged in the care of the child side by side – the former by their close bonds to the child, the latter through employment.7,8 Roles alternate over time between parents and HCWs,7 and the transition process from curative to palliative care raises confusion, especially for parents, regarding responsibility.9 They need to be included in the decision-making and in honest relationships with the HCWs.10 Participating in the care, being physically present and close to the child, has been found to be of utmost importance for the parents’ wellbeing.11 Although long-term hospitalization engenders a special relationship between the family, the child and the paediatric nurse, it can also give rise to frustration and guilt for the nurse.7,8 Differences in life circumstances between paediatric intensive care nurses and families have resulted in cultural clashes, causing discomfort for nurses.12 Additionally, conflicts between parents and HCWs about end-of-life decisions are taxing.8,13 Both physicians and registered nurses have described emotional pain and lack of time as ethically demanding in paediatric care.14–17 Painful treatments and families’ emotional burdens have been linked to nurses’ burnout combined with compassion fatigue,18 and caring for a child who could not recover reportedly brought suffering.19 Occupational stress in children’s palliative care occurs regardless of location,1 both in cancer care20 and neonatal intensive care,21 but combining work with patients in both curative and palliative phases seems to be particularly challenging.22 The needs of a dying child depend inter alia on the child’s developmental stage. Nevertheless, regardless of age, fundamental physical, psychological and spiritual needs require attention.23 Children with life-limiting conditions are often cared for at home,24 but hospices, hospitals and schools are other settings of importance.6,25,26 Sometimes, dying children are cared for in intensive care units and acute wards. These units are often ill prepared to deal with the death of a child and can fail in readiness to care for dying children and their families.11,21,25,27 In summary, palliative paediatric care has been found demanding, not least for the HCWs, particularly when caring for dying children in units not specialized to their needs. Consequently, there is a need to further investigate HCWs’ experiences of caring for dying children in the specific context of general paediatric care units whose main focus is short-term illness and acute curative care.
Aim The aim of this study was to describe caring as represented in HCWs’ experiences of caring for dying children in a general, acute paediatric care setting.
Method A phenomenological approach28,29 was chosen, with the overlying principle of openness to the informants’ lived experiences.
Participants Registered and unregistered nurses in one acute paediatric ward in a larger city in Sweden were invited to join the study. The inclusion criterion was that the caregiver, in the last 5 years, had taken care of at least one 177
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dying child in the context of an acute paediatric ward providing care for children from 0 to 18 years of age. Two registered nurses and two paediatric nurse assistants joined the study.
Data collection To reach the unreflected natural position of the respondents, the first author collected data using qualitative in-depth interviews, starting with one opening phrase, ‘Tell me your thoughts about and experiences of caring for a dying child’, and continuing with follow-up questions consistent with responsive listening. The recorded interviews lasted 30–60 min and were transcribed verbatim.
Analysis Four steps following Giorgi and Giorgi28 guided the analysis. The first step was an open reading to capture the global sense, listening to and reading the interviews several times. The second step involved searching for meaning units; important words, expressions and emotions were noted, and as the process continued, various meaning units appeared. The third step was a transformation from implicit meaning to explicit constituents. The meaning units gradually grew into different patterns, the constituents. Finally, in the fourth step, the analysis intended to gain a general structure of the phenomenon, the essence, formed by synthesizing the analysis of the essential meaning of the phenomenon. In the quotations, the sign ‘//’ indicates a break in the text, and ‘ . . . ’ shows a pause. To ensure confidentiality, children are randomly called he and him or she and her, when informants talk about a specific child.
Ethical considerations Possible risks connected with the study were considered minor compared to the benefit. Although it can be upsetting to revive memories from distressing caring situations, it can also be beneficial to have the opportunity to be listened to and confirmed. The phenomenological emphasis on openness characterized the approach during the interviews, making room for the participants’ own memories and reflections. Written information about the study specified its voluntary and confidential nature, and written informed consents were obtained. The University of Va¨xjo¨, Sweden, gave ethical approval, and the head of the clinic concerned gave permission to conduct the study.
Findings From the synthesizing of the analysis, the essence of caring for dying children in an acute paediatric care unit is presented in the following metaphor: Caring for dying children is like a musically attuned composition. The ‘conductor’ depends on the ‘orchestra’ and takes responsibility for the ‘composition’, so the music can reach the dying child. The atmosphere is distinguished by compassion, trust, perceptivity, courage, and respect. The moments are fragile and could easily be disrupted and turn into disharmony. The ‘conductor’ moves carefully, uses knowledge, is flexible, and struggles to be true, sensitive, and in tune with the ‘orchestra’. When the child gets out of reach of the ‘composition’, it feels unfair that the child could not enjoy the music, anymore.
As a result of the analysis, the explicit meaning of caring for dying children was formulated in five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. 178
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Presence An atmosphere of presence, an approach of awareness and responsiveness, was mediated as important for caring: You might be a bit more cautious. // It’s not that I’m not insensitive to other children, but, like, I might be a bit more sensitive . . . // For example // there’s a lot to do and I have to give antibiotics to many patients, and then I get into a room where there’s a child // in the final stage of life, and I see that the parents aren’t at all prepared to let me in. They want to be by themselves, and don’t want to be disturbed. // Then I can back off a little, thinking that I can bring that antibiotic an hour later. But if I entered a room with another child who’s staying there (in the ward) just for a short time, having a short antibiotic treatment, I think I would be a bit pushier, saying that I am supposed to take care of your child, [and] could you please change that diaper later, or something like that. So, I’m a bit more patient . . . // Well, eh, I guess that’s because they have a hard enough time.
The carer’s approach transformed to a ‘softer’ and ‘gentler’ touch. To keep out the stress from the surrounding ward, it was important to wind down and enter the room peacefully. A balance in the relationship with the dying child, between confirmation and boundaries, characterized presence: Like what a child stated one time when I was about to take a sample and he called me: ‘I don’t want to, you poop’, he said , yes, and I said: ‘It doesn’t matter if you think I’m a poop or not’, I said, ‘We still have to . . . ’
Presence was broadened and deepened through mutual trust. Essential in the relation was to focus on ‘the lifeworld’ of the dying child, as when the child’s ‘joie de vivre’ spilled over to the HCW, facilitating presence in the caring situation: Yes, I was so happy in a way. She did look like a little troll when she was jumping around in that corridor. // Well, I thought, Oh, how nice to see that she still has some kind of happiness and shows it. // Then one day later she died. Yes . . . it was like . . . well, kind of, the memory I still have is this, when she’s jumping around in that corridor and was so happy.
Own needs were put aside, to promote presence It felt so good to do all this, and dinner was not on my mind. It was more important to be with this little girl. // Had she not been so terribly ill, I wouldn’t have been in there so much with her, I wouldn’t have . . .
and altruism evoked: At times we are pulling in beds so that we can hardly get around them, but we do it for their sake and it feels good that we can do that.
Presence depended on an honest relationship with those involved, requiring courage to involve and support the immediate family, as well as to set limits. Sometimes, the participants even had to go against their own convictions in meeting the families’ wishes. Patience, tact and flexibility were vital, waiting for the right moment to reach the dying child: Sometimes it can be harder not to make the bed than to do it; that’s a fact, so you have to accept the situation nicely. You can’t just move on, // because it was their wish, it was the mother’s wish. 179
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Caring for a dying child was about seeing and allowing, making room for all those who together shared the presence. Besides providing space for the dying child himself or herself, participants highlighted the emotional needs of the relatives, the importance of allowing them to safely show and express their feelings: You try to make the parents feel comfortable and that they, so to speak – like, there’s nothing wrong with crying. It’s OK to cry and to show emotions, it’s OK to be sad, it’s just natural. It is // well, I’ve also been standing in a room when . . . and I’ve also been crying myself. I don’t think anyone gets upset about that, not even the parents.
Presence meant to be courageous, to be honest and to show one’s own feelings, but was simultaneously characterized by caution, not disturbing their own relations with the family or interfering in relationships between the parent and child.
Self-knowledge The participants expressed the importance of being aware of their own needs, strengths and limitations; processing their own fear of death brought both personal and professional growth. To support the parents, they had to balance their own emotional expressions. Sometimes, it felt right to cry; sometimes, the heavy burden was about carrying on alone inside, without becoming insensitive. The unique and unpredictable meeting with the dying child and family brought humility You’ll never get used to taking care of someone dying, because none of them is like the other one, not the family situation, or the child’s age, or the relation to the deadly disease.
as well as having to admit shortcomings, to both parents and colleagues: I don’t know the answer to this one, but I’ll try to find out.
Recognizing one’s own limitations accentuated support from colleagues: At the start of my work here we had a child with (a particular disease) and it was really hard for me to walk into the room of this child, but I talked about it, so I, like, I took another (colleague) with me because I thought: I’m, like, going to start wailing when I walk in there, because I was, like, kind of feeling, it was so much. I had so many flashbacks when I saw this child.
Self-esteem was strengthened by ‘some form of supervision’ and awareness of own resources emerged when reflecting over how hard shifts had been managed: It feels good indeed to walk home when you know that you’ve done everything you can do – that there’s nothing more you can do. And make them healthy, well, I can’t do that, but I’ve done . . . to make it easier for them . . . yes, I have to put in more effort and change the beds more often and empty the wastebaskets and this that you’re kind of responsible for the nursing around the clock. // Those shifts give a good feeling indeed.
Self-knowledge was shown in being aware of the risk of favouring some families: It’s easier, though, to do more for those who appreciate it // but // there you have to reconsider and show your professionalism, trying to be equally helpful to everyone. 180
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Injustice in dying The process of a child’s dying seemed unfair and difficult to reconcile. Participants felt it unfair that a child’s life should end so soon: It’s always harder when a child dies than if an adult dies. // I think it’s so unfair. Life ends so fast. They haven’t been here for so long. I could wish that every person could live a little bit longer, particularly the children.
A sense of injustice was experienced when previously healthy children suddenly turned out to be severely ill and dying. Instead, it was expressed that healthy children ought to live a long life. Known, existing, lifeshortening conditions were experienced as easier to accept: At an emergency ward for children it’s // not quite as acceptable to die. // Well, for severely handicapped children, when you already expect from birth that the child will not reach adult age, then it’s more accepted // – for everyone, for the parents and, well, for the medical staff. Yes, in most cases, I think so. You already know that it’s going to happen and have been living with that fact for a long . . . but when a child in full health is taken ill, then the situation turns completely different. // Healthy children should live into old age.
In a field focused on curing, death was unaccustomed and difficult to respond to It feels unusual, because you work in the medical field to get everyone in good health, but, unfortunately, it’s not like that with everyone and that . . . Actually, we should maybe talk more about it, because it is so unusual to talk about these conditions, about death, and – what will happen next?
and when the dying child brought up death, things came to a head: ‘Then I die!’ . . . [Informant renders the words of the child.] ‘Yes’, I said, ‘if (the organ) doesn’t work, then . . . then that’s what happens’. I had a hard time saying: ‘Yes, then you die’. I couldn’t make myself do it.
The injustice felt towards dying awoke miserable feelings; however, the participants attempted to find meaning and explanation by gaining knowledge about the disease and degradation process, and furthermore, to appreciate the child’s short life for its own sake: I tend to tell myself that maybe there’s some kind of meaning in the fact that this child will . . . during her/his short life, make the parents see things in another light.
Moreover, in faith, mourning could be appreciated as valuable in itself, putting death beyond meaning, explanations and understanding: It’s not always that you’ll understand what’s happening, and maybe it’s not meant for us to understand it anyhow, but . . . sometimes things happen that are terrible, and you’ll have to try to reconcile yourself to them, and try . . . It’s important to mourn, and to get help to mourn, if you feel you can’t manage on your own.
Own suffering The participants expressed feelings of sadness when caring for a dying child, finding this early death meaningless. Furthermore, feelings of inadequacy evoked emotional pain. Lack of time affected the possibility for calmness, quiet and peace, hindering them from dealing with existential questions and preparation for death. Lack of time for reflection created dissatisfaction and frustration: 181
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What I kind of miss, particularly at the acute ward, is giving a sense of safety, peace, and time to talk and ask questions, or just sit down and be silent together. Eh, that kind of time isn’t there. // I guess, that’s when I feel this frustration, that I’m not . . . My nursing work doesn’t measure up to what I wanted to achieve.
When a child was dying, it was considered ideal to offer a beautiful, peaceful and harmonious environment. However, instead of continuity, the dying children met a variety of caregivers, and preparation prior to procedures was not always fulfilled. The tensions between knowledge and the ‘complex reality’ created frustration, and to some extent guilt, when having a desire to do more for the dying child than was possible. Moreover, it hurt knowing more about the child’s condition than could be revealed: It was a horrible feeling, just to . . . but I tried to be very careful, not to give any false hope, and I would only listen. // I tried to stay calm, but it was tough, it was extremely tough. Just that feeling that I knew more than I had told them.
Emotional pain emerged in conflicts between what was experienced as the right thing to do and what was prescribed: I felt like: You can’t do that, I thought. It didn’t feel natural. // . . . I got along well with the doctor. He said like this: ‘We do this in order to calm the parent down’ . . . but it was not necessary. For me, it didn’t feel quite OK to do what was not necessary. Maybe I was foolish and maybe I should have accepted an attempt to give . . . ? But, when I handed out that [medicine], it didn’t feel all right.
It was painful not being able to fully share the presence, but rather being distanced from the child: I was never allowed to see that child naked. I could never see if he had any wounds. I was never allowed to see him. I didn’t know, I could only guess. I never knew what he looked like, how his body was functioning. // I wanted to see his body, so . . . yeah, so I knew if he had some big wounds and if they were healing. I knew nothin’ . . . No, but [the parent] didn’t want me to unwrap his . . . and when he was naked in the shower [the parent] was there. We were never allowed to come in and see. // But it was their wish, it was [the parent’s] wish. Then you sort of have to adjust and compromise.
When the child’s dying process was denied by the parents’ hindering influence on the caring situation, a sense of powerlessness emerged; openness and presence were replaced by a feeling of being ‘shut out’: You were not allowed to do your best . . . You had to refrain.
After the child’s death, emptiness ‘like a vacuum’ was experienced, in relation both to the child and to the parents: Yes, it feels a bit like, having had a child, cared for a child, for a long time, you would have liked to, how awful that ever might sound, have been there when the child passed away, to kind of say goodbye . . . // Because you have made contact in a sense, you have been so close to the parent. You never get used to a child dying.
Emptiness also occurred when there was no chance to take farewell. The relationship was unfinished, and respondents expressed having difficulty adjusting: It felt awkward. // There I had some trouble: ‘Oh yes, he hasn’t gone home, oh no, he died’ . . . So, it took a while before I sort of came . . . could take it in. 182
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In need of others Caring for dying children awoke a need of comfort, support and relief from others. Together with colleagues, it was possible to go through the unbearable We went in together, so that [the colleague] was standing behind to support me when I asked if there was something they needed and things like that, and that was so comforting. It was so good to have my colleague by my side. // It was just that, that I felt like I was going to scream when I got into that room, but that [my colleague] kind of was standing there. I would, I said: ‘If I break down, I nudge you and you’ll take over, then I’ll go out and stand crying by the sink’. So that you had some kind of support and like, if I would be all silent, [the colleague] could kind of take over, and yet as I went in there and [the colleague] helped me so that I got over it, I could process the things from my own childhood.
and the atmosphere around the dying child was easier to endure: It’s somewhat easier [when there are two of us] to encounter and kind of carry the mood in the room.
It was highly valued to be able to share the suffering. At the end of the shift, it felt good and safe to turn over the responsibility to the following colleague, convinced that the child would not be forgotten. Representatives from other professions were helpful and supportive: ‘pain team’, ‘play therapy’ and ‘counsellor’ were mentioned. To have a supportive management was also appreciated: ‘a manager going in the same direction // as, of course, there is an added workload’. Furthermore, it was described as invaluable to have partnership and reach agreement with parents and relatives: Things get easier if you come closer to one another and you understand the language of the other.
A desire for supervision during and after a child’s death came up: I would have appreciated some kind of supervision. Like, when I felt that I didn’t do a very good job, or I might have been able to convey that differently, or I could have been able to support [the child] in some other way.
At death, it felt important to conclude the situation together, preferably across professional boundaries. Comfort appeared when others were close at hand; the opposite appeared in solitude, bringing up questioning thoughts and reflection after the child’s death about the importance of support: Maybe I already, in the time when she was living, would have had a chance to address that again, and get some support in how to express myself.
Discussion The essence of caring for dying children emerged as akin to a musically attuned composition where the ‘conductor’ took responsibility for the ‘composition’, so the music could reach the dying child. It meant tuning in to the needs of the child and the family and involving the parents as well as other HCWs when striving towards harmony. Presence appeared as prominent, and the involvement when caring for dying children in this study was similar to that expressed when caring for children with special needs in Australia,7 as well as critically ill children in Swedish intensive care.3 According to Arman and Rehnsfeldt,30 unselfish love and caring presuppose each other in a ‘presence of love’. Altruism and honesty, as well as responsiveness, were revealed in this study, similarly expressed by Younger,31 who likened responsive care to a dance, beginning with presence. Erichsen et al.32 emphasized that honesty is essential when caring for dying 183
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persons, and Kane et al.33 likewise found it important to create an atmosphere to give room for everyone involved to be both social and spiritual. Consequently, presence may fail to materialize if the caring situation is not given time, or if honesty is missing. Knowledge about one’s own strengths and weaknesses was found to empower and facilitate the managing of demanding situations. Self-knowledge was essential for caring, making room for presence as well as engagement beyond the actual task, found by Arman and Rehnsfeldt34 to be experienced as the ‘little extra’ in care. However, a bad conscience, tiredness and burnout followed when unregistered nurses in an acute ward experienced that the ‘little extra’ had to be omitted because of time limits.35 There is a fine balancing act in not ending up overinvolved, a factor found to increase the risk for burnout.7 On the contrary, acceptance of oneself – one’s limits and abilities – is an important factor in preventing burnout;36 therefore, space for personal development cannot be overestimated when caring for dying children. The injustice in dying expressed in this study might be linked to the prevailing view in Western societies that it is unnatural for a child to die, in accordance with ‘the life cycle of nature’ (p. 86),13 and the grief over a child is often long lasting and intense.37 Regardless, HCWs are challenged to cope with childhood deaths. At the same time, it might be that the feeling of injustice is a prerequisite for being compassionate towards the parents, and the management of the process around a dying child can be a way to protect HCWs against their own discomfort with death.8 As found in previous research,8,13,19,38 caring for dying children was associated with emotional pain and suffering. The interviews revealed that feelings of inadequacy and time constraints led to powerlessness and frustration. This could be compared to registered nurses feeling forced to prioritize medical routines before the needs of the child15,16 and to follow medical prescriptions, rather than providing a comfortable death20,39 – focusing on medical efforts, rather than on the patient.37 Inadequacy in pain management and lack of preparation can lead to feelings of failure as well as despair.40 Consequently, it seems that suffering follows, when HCWs feel hindered in meeting the needs of the dying child. Likewise, emotional load and ethical conflicts, consuming relationships, maintaining control in an unpredictable context and lack of support led to stress among palliative nurses in Northern Ireland.1 Moreover, combining patients in both curative and palliative phases increases stress,22 and when honesty has to be put aside, moral conflicts arise.32 In this study, feelings of forced aloofness came up when HCWs were not allowed to fully take part in the presence. Suffering arose when openness was thwarted and when HCWs had to act against their professional knowledge and inner feelings.19 The ethical dimension when caring for dying children is of great importance to consider, since conflicts about moral issues can affect not only the individual HCW but also the whole organization.41 When HCWs are absent during the moment of death, parents’ experiences are negatively affected.26 It is interesting that HCWs in this study were similarly affected with emptiness and emotional pain, when they were not present at the moment the child died. Overall, time is essential when caring for dying children, not having time to grieve could disturb the future ability to care for dying patients.22 Papadatou37 showed that HCWs’ grief was neglected in paediatric care and that their feelings had to be repressed or ignored. This study reports that feelings of emptiness – like a vacuum – occurred, when death became a fact and long relationships were broken, as well as when it was not possible to bid farewell. It seems important to keep in mind that HCWs need ‘a period of healing’7 before entering into a new relationship with a dying child. Caring for dying children awoke the need of others. Paediatric oncology nurses’ grief has been associated with stress and burnout,20 but ‘peer-supported storytelling’ helped both the storyteller and the listener to find meaning. Similarly, both support from colleagues and guidelines were reported by nurses in a neonatal intensive care unit to be helpful as facilitators for end-of-life care.21 A Swedish government report proposed continuous education and supervision for all HCWs working in palliative care, emphasizing dedicated time for reflection and the importance of interdisciplinary collaboration.42 Following these guidelines might give room for ‘presence’, regardless of where the dying child is cared for. 184
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Methodological considerations Although these findings apply to a specific context, participants’ experiences of caring for dying children in one acute paediatric ward, this perspective might shed light on and enrich the understanding of caring. In this study, experiences from both registered and unregistered nurses was sought, related to the fact that they are engaged, side by side, in the care of dying children. Although unregistered nurses have been found to have a somewhat different perspective from registered nurses on ethical problems,35,43 our intention was not to compare experiences but to enrich data. To prevent unreflected pre-understanding in the research process, an open-minded approach was sought, and questions throughout the interviews aimed at a deeper understanding of the informants’ experiences of the phenomenon. Furthermore, with the intention of describing the phenomenon at hand, data were carefully and critically reviewed during the analysing process. The analysis was discussed within the co-author group and with other researchers skilled in the method. The constituents are, in fact, intertwined, but for clarity, described separately. The essence is a result of a holistic perspective of the findings, where the constituents and the relationships among them are formulated as a metaphor. The essence is, as expressed by Giorgi and Giorgi,28 ‘not universal, but . . . general because of the role of context’ (p. 45). Quotations are presented in the results to ensure transparency.
Conclusion Caring for dying children has been found to be a delicate task for HCWs to face all over the world, and the ethical dimension is emphasized in international research. In this study, caring is described as a musically attuned composition, where presence as well as self-knowledge is emphasized. Emotional pain and suffering accompany caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient’s needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Thus, it is suggested that caring in ethically demanding situations can be facilitated through presence, atmosphere, self-knowledge and time. This challenge does not demand highly technological solutions; these assets are readily available no matter where on earth. However, since the findings in this study are associated with the context, that is, one general acute paediatric care setting in Sweden, there is a need to further investigate these prerequisites for caring when a child is dying. Acknowledgements With grateful thanks to Margaretha Ekebergh, Fredricka Gilje, Kerstin Hopstadius and Marcus Furingsten for valuable contributions. Conflict of interest The authors declare no conflicts of interest. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. McCloskey S and Taggart L. How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses. Int J Palliat Nurs 2010; 16(5): 233–240. 185
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