Background
Nursing homes and home care nursing must provide more end-of-life-care, due to the international trend of downsizing hospital units and cutting health care costs in secondary health care [
1,
2]. Henceforth, care workers in primary health care will increasingly encounter dying patients’ spiritual and existential suffering.
In 2010, managers in a leading hospice collaborated with primary health care administrators in a major Norwegian city, to create a pioneering “mobile hospice nurse spiritual and existential care teaching team”. Their aim was to teach and train care workers in spiritual and existential care for the dying in nursing homes and home care nursing. Nursing home and home care managers requested the mobile teaching team’s services to provide on-the-job-support and supervision for care workers who felt anxious and uncertain about engaging in spiritual and existential care for dying patients. The mobile teaching team supervised registered nurses as well as state enrolled nurses and unregulated nursing assistants, because care workers could be anxious and uncertain about spiritual and existential end-of-life-care, regardless of their professional status. The different categories of nursing staff will therefore be referred to as care workers in this paper.
Dying patients frequently experience severe spiritual and existential distress [
3]. Bruce et al. [
4] described existential suffering as a condition where morbid suffering may include concerns related to hopelessness, futility, meaninglessness, disappointment, remorse, death anxiety and a disruption of personal identity. Research indicates that a significant number of dying patients long for adequate spiritual and/or existential care and counselling [
5,
6]. Patients with advanced illnesses report that their medical caregivers infrequently provide spiritual care [
7]. According to Udo [
8] several studies show that many patients are dissatisfied with the emotional and existential support they are given.
According to Puchalski et al. [
9] most care settings fail to provide optimal spiritual care to those with serious illness and those at the end of life. Several studies show that registered nurses and other care workers often are inadequately prepared and feel anxious and uncertain about providing spiritual and existential care for the dying [
8,
10‐
14]. This may lead to unmet spiritual and existential needs, resulting in increased patient suffering [
7]. Henceforth, there is a widespread need for training in all aspects of spiritual and existential end-of-life-care [
7,
15].
Several nurse educators have grappled with the complex challenges of developing a curriculum and strategies to teach spiritual care [
16‐
19]. However, given the abstract nature of spirituality, teaching spiritual care is more complex than teaching concrete dimensions of care [
20]. Providing spiritual care is a process with no fixed answers [
8]. Care workers might therefore benefit from receiving spiritual and existential end-of-life-care training from expert nurse practitioners in the workplace [
21‐
25].
In 2014, Pesut et al. [
26] conducted a scoping review to summarize the available evidence concerning palliative care education for nurses and other nursing care providers. None of the references in their review explicitly mentioned training care workers in spiritual and existential end-of-life-care. This suggests that there exists a gap in the literature concerning this topic.
As there seems to be no single agreed definition of spiritual care in the research literature, the term is open to interpretation [
10,
13,
27‐
29]. This study has therefore adopted a pragmatic and functionalist epistemological point of departure since it is targeted at the practical implications of
the mobile teaching team’s experience, rather than the ontological questions related to the conceptual framework of spiritual care.
Aim
The aim of this study is to illuminate a pioneering Norwegian mobile hospice nurse teaching team’s experience with teaching and training care workers in spiritual and existential care for the dying in nursing homes and home care settings.
Results
Three themes emerged through the structural analysis: Fear and Uncertainty, Bedside teaching, Courage and Competency. In the text, citations are used to illustrate the results.
Fear and uncertainty
According to
the mobile teaching team, care workers often expressed that they felt reluctant to address dying patients’ existential and spiritual suffering.
The mobile teaching team said that care workers could be quite afraid of talking with patients about their existential and spiritual concerns. According to the team members, care workers could hesitate to ask how patients “
really felt”, because they were afraid of not being able to answer the patients’ spiritual and/or existential questions:
Nurse 1: “In my experience a lot of care workers are scared of death. They don’t dare to talk with the patients about dying, because they are so uncertain about what to say.”
Nurse 2: “You know, when you’re “out there” some of the care workers want us to deal with the patients’ spiritual needs for them. But my goal is to build up their courage and confidence so they can do it themselves. I try to show them how to create natural openings to talk with patients about these things”.
Nurse 3: “Yes, but there is also a lot of healing in sharing the silence. So I try to show them how important that is. But its really hard for some, because they are so scared of being with the dying that they try to avoid staying in the room with them.”
The mobile teaching team tried to help the care workers to understand that they could convey consolation, just by active listening and sharing moments of silence with the patients. Care workers were encouraged to do this. However, the mobile teaching team often experienced that “just being there”, could often be too challenging: “Many of them are afraid of silence and just being with the patient in the room of death. They need to be able to use themselves as an instrument, becoming more courageous, and daring to investigate how the patient experiences his situation.” In the team members’ opinion, care workers’ fear of exposing themselves to patients’ existential and spiritual suffering stemmed from personal insecurity as well as insufficient communication and listening skills.
Bedside teaching
The mobile teaching team taught care workers to identify patients’ spiritual and existential suffering, initiate existential and spiritual conversations and convey consolation through silent presencing and active listening. They transferred their personal spiritual and existential care knowledge by participating actively in patient care together with the care workers. The mobile teaching team gave care workers supervision, and feedback directly related to these situations. They called this “bedside teaching”. Bedside teaching could take place during many kinds of patient encounters, such as giving physical care, conducting nursing procedures, or just taking part in conversations with patients.
Inspired by their holistic hospice values, the mobile teaching team strove to teach care workers to “work from the heart”, emphasizing the relational aspect of care and each patient’s uniqueness. Using their practical understanding and experience, the team members taught care workers to integrate the physical, social, psychological and spiritual dimensions into a holistic approach to spiritual and existential care: “…- You can’t talk about spiritual or existential warmth when the patient lies there in spasms of pain. If the pain isn’t relieved, − forget it!”
The mobile teaching team was frequently summoned to help care workers in nursing homes and homecare to communicate more skillfully in “the difficult conversations around death and dying-“where they didn’t know what to say”. By acting as role models in these situations, the mobile teaching team showed care workers how they could encourage patients to vent their spiritual and existential distress: “Sometimes they need to hear the kind of questions I ask and see how I relate to the patient”. “Did you see what I did? “Did you notice how straightforward I was?” Did you notice how the patient reacted?
The team members also demonstrated how they used natural opportunities during physical care to assess spiritual and existential needs and integrate appropriate spiritual and existential care. Simply asking, “How are you?” could be enough to “open the door to meaningful and safe dialogues with patients about their thoughts and feelings”. The mobile teaching team taught care workers to listen actively and pay attention to the patient’s facial expressions and body language.
In addition to role modeling, they also supervised and encouraged care workers to gradually conduct the patient conversations independently. Care workers were encouraged to enter the room with the simple question“What do you need from me today?” The team members provided support by accompanying care workers in the conversations, albeit staying in the background as much as possible. In the mobile teaching team’s opinion some care workers underestimated themselves: “Many just need a “little push” and encouragement to talk with the patient alone, using me as a conversation partner to help them reflect on how they handled the situation”.
In the mobile teaching team’s early days, the team members had tended to “take over too much”, eagerly demonstrating “how to do it”. However, as the team members gained experience, they gradually learned to “walk in step with the care workers”, and communicate on their “wave length.” Acting less as instructors and more as supervisors, the mobile teaching team encouraged “learning by doing” to help care workers develop their courage and competency to alleviate spiritual and existential suffering.
The mobile teaching team stressed that critical reflection was an important part of “learning by doing”, and initiated reflective dialogues with the care workers about their spiritual and existential care challenges, before and after patient encounters. The mobile teaching team experienced that these conversations often evolved around the challenges of: “finding out how the patient really is, talking about the painful and difficult things related to death and suffering, providing hope in hopeless situations, becoming aware of and talking with patients about their religious or spiritual concerns, collaborating with the chaplain, how they could endure in their work, being present in the “room of death” and in the patient’s suffering, daring to sit down and be quiet together with the patient, being a fellow human being and using oneself as an instrument”.
Courage and competency
The
mobile teaching team reflected on their experiences with teaching and training care workers in spiritual and existential end-of-life-care through situated bedside teaching. Drawing on care worker feedback and their own observations, they considered that situated “bed-side teaching” had proven to be an important tool to develop care workers’ courage and competency to provide spiritual and existential care for the dying:
“When I have accompanied the same care workers to the same patients several times, I’ve noticed that they have gradually become braver, because they actually dare to ask their patients some of the difficult questions.”
The mobile teaching team observed that care workers became more involved and willing to expose themselves to their patients’ spiritual and existential suffering. They thought that this indicated that the care workers had become more courageous: “I see that they dare to involve themselves more in these situations, exposing their vulnerability. I see that they have become braver.”
The mobile teaching team said they experienced that many care workers became more frustrated because they saw the patients’ needs more clearly after receiving situated bedside teaching. Based on their observations, the mobile teaching team thought that care workers had become more engaged in alleviating their patients’ suffering: “You see, when they learn from us, they become frustrated, saying things like:” But we don’t have enough room! We don’t have the resources we need”. Then I answer: −Well, have you used your knowledge to ask for more time and resources? - Have you documented that the patient has existential or spiritual concerns, and needs someone to talk to? - And then they have gone and done that. So you see, I think it’s rewarding, when they vent their frustration during supervision, because I think this shows that they have become more involved. And then I’ll ask them to reflect: “What do you think you can do? So I dare say that their competency has improved.”
Discussion
In this study the mobile teaching team narrated about their experiences with teaching and training care workers in spiritual and existential care for the dying. To develop a critical comprehension (the last step in the analysis), the text was read as a whole, taking into account the authors’ preunderstanding, naïve reading, structural analysis, previous research and relevant theory.
The mobile teaching team experienced that care workers’ main obstacle to engage in spiritual and existential care was their fear and uncertainty of facing dying patients’ suffering. It seems reasonable to believe that the care workers’ fear and uncertainty was driven by their own feelings of anxiety related to the unpredictable reality of illness, suffering and dying [
56]. According to Popovic [
57], anxiety can be seen as an affective expression of our awareness of uncertainty. Our results are supported by Bruce et al’s [
4] study. They found that caring for patients with irresolvable suffering exposed the care workers to their own anxiety of experiencing fear, pain and suffering. This made them vulnerable to their latent fear and anxiety of death and dying:
” The struggle in someone else’s life opens up fears and anxieties about the transient nature of our own lives on earth…. Maybe not just the fact that we will die, but the fact that we may suffer or face fear and pain”[
4 p.3]. This anxiety is understandable in light of Yalom’s [
58] groundbreaking work on existential psychiatry. According to Yalom [
58], death is a primordial source of anxiety: “
Occasionally some jolting experience in life tears a rent in the curtain of defenses and permits raw death anxiety to erupt into consciousness. Rapidly however, the unconscious ego repairs the tears and conceals once again the nature of the anxiety” [
58 p.44]. This suggests that care workers’ reluctance to be with patients
“in the room of death” was generated by a need to distance themselves (in Yalom’s words), to prevent
“raw death anxiety from erupting into consciousness”.
This seems reasonable considering that death is a taboo subject in our society [
59]. Philippe Aries points out that western culture marginalizes death and dying [
60,
61]. Western society’s view that nature exists for us to use and control makes it more difficult for people to experience and accept severe illness and functional decline as a part of life [
62]. Due to increased institutionalization and medicalization of the suffering and dying, fewer people have experiences with death and therefore fear it more [
62,
63]. Western medicines’ advances and preventive care practices have spawned unrealistic expectations of mastering suffering and dying. Moreover, the unaesthetic aspects of aging, suffering, and dying stand in stark contrast to western society’s beauty and body worshipping [
63]. As a consequence, we live in a society where many people are psychologically unprepared and fearful of facing the existential uncertainties that accompany aging, suffering and dying [
62,
64].
Nevertheless, encountering work related existential uncertainty is a reality in the lives of care workers involved in end-of-life-care. According to Penrod [
65] experiencing uncertainty is a discomforting feeling that can be mediated by feelings of confidence and control. However, existential uncertainty is a fact of life that cannot be solved or controlled “
by becoming more certain” [
33 p. 44]. Care workers must therefore learn to live with existential uncertainty in order to endure bearing witness to dying patients’ spiritual and existential suffering.
Vaismoradi et al. [
66] point out that uncertainty is an inescapable and omnipresent fact of decision-making in nursing because people experience complex life events surrounding health. In health care as in other areas of human activity, judgment and decision tasks are uncertain. Professionals are therefore legitimately unsure and uncertain about what is the right or best thing to do. Nevertheless, care workers must make choices in almost every patient encounter [
4]. Courage is therefore demanded, because a window is opened to the unknown [
67]. In this light, alleviating dying patients’ spiritual and existential suffering can be understood as acts of courage [
68].
The mobile teaching team considered that bedside teaching was an essential means to enable the care workers to become more courageous “to be with patients in the room of death”. According to them, bedside supervision had strengthened the care workers’ courage and skills to alleviate their patients’ spiritual and existential suffering, because they had observed that care workers gradually became more daring and willing to involve themselves in the patients’ situation and to talk with them about their concerns related to suffering and dying.
Ohlén [
69] points out that suffering patients can receive both comfort and strength, and thereby courage to face life, from fellow human beings who are present, and who show, through their actions, that they will be by his or her side and try to share the hard times.
According to Aristotle, human action is a practical skill. From this perspective, knowledge can be understood as
episteme (theoretical knowledge),
techne (hands on skills) and
phronesis (the personal ability to take action in a wise and prudent manner) [
69‐
71]. Ohlén [
69] states that all three knowledge forms are each other’s prerequisites. Any one of them alone is not enough. The ability to act prudently and wisely
(phronesis) presumes theoretical knowledge
(episteme) about suffering and alleviating suffering as well as hands-on nursing skills to alleviate suffering
(techne). However, Ohlén [
69] emphasizes that neither theoretical knowledge nor hands-on skills can alleviate suffering unless they are applied with sensitive judgment and prudence
(phronesis). In the setting of caring for the very ill and dying
“phronesis” or
practical wisdom understood as the care workers’ ability to meet the suffering person and to act with sensitivity and openness becomes important [
69]. This is in line with our results. For
the mobile teaching team, teaching spiritual and existential care involved more than conveying theoretical principles
(episteme) and practical nursing skills
(techne). The mobile teaching team placed great importance on teaching care workers to
“work from the heart”, emphasizing the relational aspects of care and each patient’s uniqueness. To alleviate spiritual and existential suffering, care workers must learn to be responsive and open in encounters with dying patients and their families [
69]. In acting sensitively and openly, there is an implicit acceptance of the moral responsibility for the other person as a basis for the relationship. This kind of sensitivity and openness is characterized by the care workers’ actions that arise from proper and appropriate intentions [
69,
72].
According to Eraut [
23] efficient work place teaching schemes allow practitioners to teach staff to integrate several different forms of knowledge and skills, applying a holistic approach to knowledge. By sharing their practical wisdom and experience with the care workers, the team members demonstrated how to integrate the physical, psychological, existential and spiritual dimensions in a holistic and sensitive approach to spiritual and existential end- of- life care.
One of the features of learning in a practice context is that experts are able to guide novices through the complexities of practice [
73]. According to Lave & Wenger [
74] situated learning is central for becoming proficient. Learning in practice is a matter of acculturation, of joining a community of practice, rather than the application of decontextualized skills and principles.
The mobile teaching team’s bedside teaching approach provided the care workers with situated learning experiences in spiritual and existential care. Brown et al. [
75] describe the way novices learn from experts as a “
Cognitive apprenticeship”. One of the defining characteristics of cognitive apprenticeship is that experts make their situational and tacit knowledge explicit as they coach the learner. Much clinical knowhow can only be demonstrated as the particular situation arises. The variety and exceptions in actual clinical practice elude textbook descriptions but gradually yield to the experienced nurse’s fund of past similar and dissimilar situations. It is this demonstration that is so essential to the novice [
76]. According to Brown et al. [
75] experts make use of the following strategies to support novices as they develop their competence. These include
modeling, scaffolding, fading, articulation, reflection and exploration. All of these strategies were found in
the mobile teaching team’s bedside teaching practice.
Modeling involved showing care workers how they communicated with the patients:
“Sometimes they needto hear the kind of questions I ask and see how I relate to the patient”. Afterwards, the team members would draw attention to key features from the conversation:
“Did you notice how straightforward I was?” Did you notice how the patient reacted?
Scaffolding involved supporting the care workers by being present during the conversation, keeping in the background as much as possible. As the care workers became more competent the team members would withdraw (fade) the support (scaffolding) and transfer the responsibility to the care workers: “Many just need a “little push” and encouragement to talk with the patient alone” As the mobile teaching team saw that the care workers increased their competency, they used articulation, reflection and exploration, by initiating dialogues to help the care workers to reflect and explore how they handled the situation.
Although developing individual care workers’ spiritual and existential care competency is important, the quality of spiritual and existential care also rests on other variables, such as the general work place culture, philosophy, leadership and organization of care [
77]. Henceforth,
the mobile teaching team’s descriptions of individual care workers’ competency improvement does not provide a picture of the overall impact of their situated bedside teaching in the nursing homes and home care settings [
26].
A less qualified workforce increasingly dominates nursing homes and homecare nursing at a time of increasing prevalence of complex heath concerns [
59,
78,
79]. Our results suggest that developing mobile expert nurse teaching teams in other relevant fields of nursing (such as hospice, dementia and geriatric care) may be a pedagogically effective and practical means to redress the widening gap between work force quality and the demand for care in primary health care [
78]. Compared to the expenses of arranging education sessions and releasing staff to attend them, workplace learning under the guidance of mobile expert nurses may be a time and cost efficient means to improve the quality of nursing care in primary healthcare. Henceforth, Nicole and Reid [
80] recommend employers to consider educational approaches that encourage workplace learning.
Competing interests
The authors declared that they have no competing interests.
Authors’ contributions
KT, VS, and LJD designed the study. KT and VS collected the data. KT, VS, KK, LJD performed the structural analysis. KT transcribed the interview and drafted the manuscript. KT, VS, LJD, KK contributed to the interpretation of the results and critical review of the manuscript. All authors read and approved the final manuscript.
KT, RN., RNT., PhD. student, MF Norwegian School of Theology and Center for the Psychology of Religion, Innlandet Hospital Norway, Associate Professor Lovisenberg Diaconal University College, Norway.
LJD Professor, Dr. Theol., MF Norwegian School of Theology and Director of The Center for the Psychology of Religion, Innlandet Hospital, Norway.
KK Professor, PhD., RN., RNT. Department of Nursing and Mental Health, Hedmark University College, Norway and Department of Nursing, Nesna University College, Norway.
VS Professor, PhD., RN., RNT. Lovisenberg Diaconal University College, Norway.