For studying this purpose, we applied the qualitative method Interpretative Phenomenological Analysis (IPA) [19]. IPA originates from health psychology but is used increasingly within health sciences. IPA is developed to examine how people create meaning based on their experiences and IPA is phenomenological in the sense that it can be used to describe experiences with the participants’ own words. Therefore, IPA seemed to be an appropriate approach for the purpose of the study. Based on an interview guide, we conducted 12 semi-structured interviews at Hospice Sydfyn on the South of the island Funen and Arresødal Hospice on the North of the island Sjaelland. Purposeful sampling was performed and participants were recruited in collaboration with the HCPs at the hospices [19]. Based on a personal knowledge and a clinical assessment of possible participants, the HCP on duty asked if the patient might be interested in meeting the first and the third authors, respectively. If the patient agreed to this, they were introduced to the purpose of the study and their possible participation in a qualitative research interview. Thereafter, the patient could either consent to participation or refuse to participate. All interviews were recorded and transcribed in a pseudomized manner, after which the audio files were deleted. The first author conducted three interviews with patients, while the last author conducted nine. The interviews lasted, depending on the patient’s condition, between 19 min and 56 min (average 36 min). The interviews took place in the patients’ rooms at the hospices. Eight women and four men participated, and the average age was 61 years. The patients were all diagnosed with different kinds of terminal cancer.

In addition to being a method of conducting research, IPA is also an analytical strategy for analyzing interview data [19]. The analysis was performed step-by-step. First, the interviews were transcribed by the first and last authors, respectively. Thereafter, data were provided with notes on both the content and structure of the interviews and an incipient interpretation of data took place. In the next step, data, which now consisted of both interview data and interpretive notes, were condensed into themes, which eventually became overarching themes and sub-themes. This process was conducted for all interviews separately. Finally, the interpretive, step-by-step analysis consisted of studying patterns across the 12 interviews and developing final themes for the entire dataset.

Theory

For interpretation of the findings, we used theory of theologian and philosopher K.E. Løgstrup [20], professor of nursing Kari Martinsen [21,22,23], and professor of psychology Bo Jacobsen [24]. Løgstrup describes how in all human encounters there is an unspoken demand to take care of the person who meets us. The demand stems from a basic interpersonal trust and in the encounter with another human being the most responsible way to respond to this trust is based on a belief in what is best for the other [820]. Kari Martinsen, like Løgstrup, also focuses on relational, interpersonal relationships, and the sensing that the human encounter brings about. She describes this as interpretation. Interpretation consists in sensing and interpreting the other human being in the relation through what the other expresses both verbally and bodily. Sensing makes us receptive to impressions from other people [21,22,23]. Bo Jacobsen’s existential psychology is based on existential philosophy and focuses on how humans think and relate to life and the basic conditions and questions in life (e.g. death, freedom, isolation, and meaning) in relation to their daily lives [24].

Findings

Through the step-by-step, interpretive analysis, three themes emerged: 1. When death becomes present, 2. Direction of the initiative, and 3. Bodily presence and non-verbal communication. Below we present these themes, and subsequently these are discussed in relation to the three theoretical perspectives.

When death becomes present

The patients all reflect on and want to talk about death, including their own impending death. Death becomes, so to speak, present for the patients. For example, a patient expressed how a gradual habituation takes place, where death becomes integrated as part of everyday life:

“And it [death] had a lot of focus for me in the beginning. I may have gotten use to it by now, I think. Although it doesn’t make it better, though. I think I have gotten use to it. A little bit of everyday life has come into it.”

This quote illustrates, on one hand, how death becomes a part of everyday life. Conversely, the quote supports that, although death is present for the patient, she also maintain the importance of everyday life containing more than illness and being a patient. Several of the patients emphasized everyday life and being self-reliant as important. One patient put it this way:

“I’m so tired of always being the weak one. And, I have been [weak] for so long. It happens when you are hospitalized often. Then you become nothing but a patient; anonymous. Education and personal interests, everything just disappears […] I get up every day, take a bath and get dressed… I need it to maintain myself […] my children, my family are important to me and I’m also very involved in my hobby. I still do all these things even though I’m here.”

This quote shows how the patient strive to integrate the presence of death, without it becoming overriding and dominant while maintaining herself and everyday life. It seems that having a daily life despite the presence of death is an essential need among the patients. Furthermore, it also appears as a significant spiritual need for the patients, that both themselves and their surroundings perceive them as more than just ill patients.

Just as the presence of death influences the patients’ everyday lives, it is seen that their perception of time, and the way they seem to be aware of their being in time, are affected by the presence of death. As an example, one patient stated:

“I don’t want to know,‘you have six month or you have this or that’. So, every time I meet a new doctor, I say, ‘no prognosis’.”

This quote illustrates how this patient reflects on the impact time has on her existence and on the conversations she has with the doctors. The impact time has on existence seems to facilitate a consciousness on the fact that the patients are forced to prioritize their time. Furthermore, time can also be perceived as a facilitator in relation to completing essential life tasks and making important decisions. One patient put it this way:

“I think it’s good to talk about it, because my son was really angry that we had to… or that we have talked about how I felt if I had a cardiac arrest. […] But, as I said, ‘it can’t help that we wait a month’.”

Another patient stated:

“There are many things I would like to finish. […] It is a recognition of the fact that I am, where I am, right? And, I’ll take it as it comes. There’s nothing else to do about it.”

These statements from patients illustrates how time, and especially the patients’ perception of their ‘limited’ time, affects their everyday lives and because their time is limited, time becomes a significant aspect of how death becomes present to them. The presence of death makes it difficult for the patients to maintain themselves in their daily lives. Patients experience that death becomes present in everyday life, but with a new understanding of time that is particularly characterized by time being limited. It is likely that the patients’ spiritual needs also include a desire to talk to the HCPs about how the presence of death influences and affects their perception of time, daily lives, and maintaining themselves.

Direction of the initiative

Another finding is the question of who should initiate conversations about spiritual matters and needs, for example, when death becomes present. We described this theme as ‘direction of the initiative’. The patients all expressed how they would like to talk about their thoughts and reflections of spiritual nature. However, we find a dilemma in the patients’ descriptions between, on the one hand, their wish to talk about spiritual issues and, on the other hand, uncertainty about who should initiate spiritual conversation. One patient said:

“Interviewer: What do you think, would it be okay with you if they [the HCPs] for example asked or told you what they believe in?

Patient: The staff? Yes. They are welcome to do so. However, I haven’t talked about these issues with any of them.

Interviewer: No. No? How can that be, do you think?

Patient: Well. We haven’t had any needs [for discussing these issues, because they as a family already have talked about it]. I don’t know why they haven’t asked. They don’t know that we have talked about it at home.”

This quote illustrates that despite the patient’s desire to talk about spiritual matters and having done so at home, she does not find that the HCPs verbally invite to these conversations, and a dilemma arises as to who should initiate spiritual conversation. We find that some patients find it easy to initiative conversations about spiritual matters, while others wait for the HCPs to initiate a conversation. Based on these patients’ statements, it seems, that both patients and the HCPs find it difficult to transcend the dilemma of who should initiate the conversation – what direction the initiative should take, so to speak. A patient stated:

“I feel like, if I’d like to talk, I’d almost rather ask them. Of course, they are welcome to ask me, if I would like to talk about it, then I could say yes or no, myself. But usually, I am very open to talk about it.”

This duality, in the patient’s statements, illustrates the dilemma of the direction of the initiative; some of the patients seem to prefer to take the initiative for conversation themselves, whereas other patients want the HCPs to take the initiative. If the patients themselves do not take the initiative and initiate conversation with the HCPs, our findings show that it is pivotal for the HCPs to listen to the patient’s non-verbal invitation, cues and clues, and then verbally seize the initiative and interrogate, if dialogues about spiritual matters are ever to emerge. For example, a patient said:

“So, I really like to talk, but I’m not always that good at starting conversations myself. It’s like someone has to get me started.”

Our study suggests that this exactly point is of great importance because the patients’ need for conversations about spiritual matters often comes to their awareness, when the HCPs takes the initiative to conversation.

Bodily presence and non-verbal communication

In the encounter with the HCPs, the patients described how they relate to some bodily and sensory dimensions. The patients use a sort of decoding in which they try to sense and decipher whether they will be accommodated, if they initiate a conversation about spiritual matters. One patient explained it this way:

“Interviewer: You said that about chemistry before? That there is someone you talk to better than others?

Patient: Yes. Yes.

Interviewer: What do you think makes the difference?

Patient: There are just some, where there is such a little more… not ten steps’ distance, but where I feel like, it is not her. Though… I have only experienced it with one here [at the hospice], where I thought our chemistry was not the best. She is nice when we talk about how I feel, and she has helped me to take a bath and she is really nice. But those slightly deeper issues – it’s not with her I would like to discuss them.”

This quote illustrates that, in the encounter between patient and HCP, the patient is balancing which thoughts and matters the patient choses to share with the HCP. There is, so to speak, a modulation in the situation, where the patient’s spiritual reflections and thoughts appear to be more private than the caring situation itself. The patient’s decoding and sensing of the HCP becomes crucial to the extent to which the patient feel accommodated, and in confidence choses to share issues of spiritual nature with the HCP. When patients were asked to elaborate on why they felt some HCPs were better at encountering them existentially than others, they described how a bodily and non-verbal dimension particularly affected their experience of the HCPs’ availability and presence. One patient stated:

“Well, it’s just their way of being. Their way of entering the door and sit down, maybe, next to me on the bed, and putting their hand on my hand. Or, take me by the shoulder. And the way they can then ask, ‘how are you?’. And then I can hear, it’s not just, ‘do those pills work?’. Then, that’s the whole thing they’re thinking about.”

This quote illustrates how the patient decodes the bodily actions of the HCP. Through the bodily element, the patient senses that the HCP cares for her as a whole human being. This can be described as bodily and non-verbal language, which the patient decodes and interprets. The patient feels accommodated and taken care off, because the HCP enters the door as she does, sits down, touches the patient’s hand or shoulder, and asks for her well-being in the way, she does. What the patient senses when encountering the HCP is of great importance as to how the patient experiences the relationship with the HCP. The patients describe a relational presence and a kind of connectedness in the situations where the HCPs, for example, probes not only their somatic well-being but also some more existential issues. This perceived connectedness may also illuminate the dilemma surrounding the direction of the initiative, because the way the patient senses and decodes the HCP has an impact on whether the patient opens up about thoughts and needs of a spiritual nature and thereby initiates a conversation. From the patients’ perspective, it seems that the non-verbal language with the bodily sense of presence takes precedence over the verbal dimension of communication. Also, we found that the patients gave the impression of sending some sort of signals, cues, or clues that called for the HCPs’ perception, decoding, and response. When HCPs responded to these signals, the patients experienced themselves as seen and understood, without necessarily being verbally explicit about their wishes and needs. One patient expressed this as follows:

“And I’m not sure, that I thought the need [to talk] was there, but then they might ask me and we’ll talk anyway.”

The patient expresses that the HCPs senses some non-verbalized needs, and when they ask deeper into what they sense, conversations of a spiritual nature can arise. This can be interpreted as an expression of the fact, that when the HCPs dares to ask to their sensation of the patient, then the patient is left with a feeling of being seen and understood. By extension, it seems that the patients emphasize the human qualities of the HCPs when describing the experience of spiritual care. One patient said:

“They are so nice… and I also think they like me. I like to talk… that’s how I’ve always been […] they are good to me and very nice.”

This quote supports that the human qualities of the HCPs and the patient’s experienced relation with the HCPs seems to be of great importance, and that the sensing and the decoding of non-verbal communication that takes place between the patient and the HCP, is significant to the patient’s experience of spiritual care.

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