The results are supported by quotations described within brackets by type of profession and FG in the main category and potential hindrances sections. The core process describes how HCPs strove to establish a trusting relationship as a prerequisite for existential conversations in PC and how the core category of maintaining presence was central to every aspect of the communication process. The process involved professionals’ different challenges and strategies when engaging in these conversations. The following specific strategies were noted during the conversation process: initiating early discussions about death (starting conversations about thoughts concerning death), capturing wishes and needs (talking about memories and showing an interest in a patient’s life story), guiding the next-of-kin through the dying process (actively showing the next-of-kin how to participate in the care of the dying person and the dead body) and upholding the professional role in the team (contributing with specific skills, values and attitudes during existential conversations and collaborating with other disciplines). If a trusting relationship was not established due to potential obstacles, then meaningful existential conversations involving life, dying and death did not occur (Figure 1).
Establishing a trusting relationship – the primary concern
Establishing a trusting relationship is a prerequisite for engaging in existential conversations with severely ill patients and their next-of-kin, and it emerged as the main concern for the HCPs in PC. The HCPs were primarily concerned with establishing a relationship and strove to enable this using different strategies. They were attentive to patients’ existential concerns and made time to listen to their thoughts and requests. However, sometimes, they did not know how to meet expressions or were afraid to make mistakes when discussing life and death with a patient and their next-of-kin. In these instances, ANs would leave a brochure or call for the RN. Our results showed that a trustful connection was required to discuss sensitive and challenging concerns with patients and their next-of-kin. If trust was not established, it constituted a potential barrier to existential conversations and meaningful conversations about death and dying.
Maintaining presence – the core category
Maintaining presence emerged as the core category (i.e. remaining steadfast regardless of circumstances). In encounters with patients and next-of-kin, HCPs stayed physically close by and were present in moments of silence. Staying nearby in daily care fostered a comforting and welcoming atmosphere. Maintaining presence also enabled existential conversations to take place that involved closure, sharing memories and supporting quality of life, even if the patient and next-of-kin were in a crisis or felt fear. When professionals upheld a state of being present, calm and friendly (as opposed to being strained), they perceived themselves as receptive to facilitating trusting, existential conversations.
Main categories comprising interprofessional strategies
The resultant grounded theory comprised four inter-professional strategies: initiating early discussions about death, capturing wishes and needs, guiding the next-of-kin through the dying process and upholding professional roles and collaboration.
Initiating early discussions about death
This strategy was based on the understanding that HCPs should initiate and conduct existential conversations about death as soon as a patient is admitted to a ward. This was achieved by openly inquiring about patients’ emotions and sensitively exploring their thoughts regarding the future and their hopes and fears. If the patient’s preferences were supported and expressed early in the illness trajectory, it allowed for the dissemination of knowledge to all involved professionals concerning the patient’s unique existential needs. For example, during initial conversations, professionals initiated discussions concerning the preferred place of death, i.e. if the patient desired to be transferred to a hospital near the end-of-life or remain at a nursing home. If the patient indicated a need to hold an existential conversation by sharing their thoughts on life and death, the professionals often endeavoured to pause and listen attentively.
‘For the most part, I listened and listened present. It was their moment, and I existed for them. The most important thing, I think, is listening’ (RN, FGIV).
Capturing wishes and needs
Initiating early discussions about death is a complex issue in PC, but it can be an entry point for enabling communication and facilitating the possibility to capture the wishes and needs of the patient. HCPs sought to establish trust and initiate existential conversations by demonstrating their availability, dedicating time and letting the patient and next-of-kin know they were open to discussions whenever desired. One strategy to capture wishes and needs was to talk about memories.
‘We talked a little bit about what they had done when they were young and looked at photographs, and then we said: “If there is anything, we are here ‘…’ and if you want to talk, we're here”’ (AN, FGV).
Sometimes, professionals received direct questions from a patient who wanted help to end their life in advance. In these instances, the professionals would meet these questions by initiating dialogue focused on the fact that no one could tell when death would come, and they would do everything to make the patient’s remaining time as comfortable as possible without shortening it. Another strategy was to provide medical information about their diagnosis and describe how symptoms can/will be alleviated if they become overwhelming.
Guiding the next-of-kin through the dying process
During this process, professionals supervised the next-of-kin by engaging with their different questions, thoughts and feelings as their loved one approached death. In these situations, the next-of-kin could be worried, angry and/or frustrated. Thus, the HCPs aimed to support them by responding to their feelings and managing them with confidence and expertise. This involved not interpreting threats and criticism personally and by behaving calmly and acknowledging the concerns expressed by the next-of-kin. They also supervised the next-of-kin by providing clear and concrete information about potential future scenarios. For instance, when breathing became irregular, or if the next-of-kin wanted to connect an intravenous drip, they would explain the danger of giving an intravenous infusion to a dying person. HCPs took the initiative to prepare the next-of-kin by practically guiding and cooperating with them, i.e. by actively showing them how to participate in the care of a dying patient and taking care of the dead body, and by supporting and guiding them to say goodbye in peace (for example, by encouraging them to touch the patient).
‘I've been on occasions where the next-of-kin ... have never seen a dead person, and then they stand there helpless. So it becomes my job to guide them: “Yes, but maybe you should hold your mum's hand”. “No, I don't dare”, “No, but I can hold her for you”… and so on’ (RN, FGV).
Upholding the professional role in the team
By upholding the professional role in the team, all HCPs contribute their specific competence, values and attitudes when communicating with patients and their next-of-kin. If a next-of-kin was upset and worried, the RNs would arrange a meeting in a secluded area on the care unit. However, PTs found it challenging to motivate patients to embrace living rather than merely existing (for instance, when a patient expressed that exercising was futile due to their impending death). According to the HCPs, availability and easy access to each other created a familiar and safe atmosphere that paved the way for existential conversations. For example, a strategy used by the PTs was to stay and talk about the patient’s previous activity habits.
‘Meeting the ill person as a human and not just that I want the patients to get up and exercise’ (PT, FGII).
Existential conversations often occurred when talking to a patient about returning home and receiving home healthcare. The OTs found that during home visits, it often became obvious what kind of problems the patient had and what assistive devices they needed. These conversations could awaken many emotions and frustrations revolving around the patient’s circumstances in daily life.
‘It´s a balancing act depending on which patient you meet and treat, and it is then important to get to know the ill person’ (OT, FGII).
One strategy was to collaborate with other professionals when they needed to reflect on demanding existential conversations. This depended on an understanding and openness in the team, where the professionals supported each other after having conversations about end-of-life care with patients and their next-of-kin. In particular, the RNs and ANs often felt alone when engaged in existential discussions. Furthermore, some RNs believed RNs and ANs often lacked education and training and consequently lacked a PC approach in daily care or did not regard existential conversations as an integral part of PC. Hence, the RNs’ strategy was twofold: to supervise the ANs in PC and to ask for their help and support, as they typically had more extensive knowledge about the patient and their next-of-kin. RNs and ANs worked as an informal team and mutually benefited from one another’s competencies.
Potential obstacles preventing existential conversations
Meaningful existential conversations with patients and their next-of-kin included aspects that HCPs perceived as hindrances, including fear of making mistakes; next-of-kin’s worries, anger and frustration; lack of time and feeling strained; lack of training in PC; and a lack of support from colleagues.
Fear of making mistakes
Fear of making mistakes may involve avoiding in-depth dialogue, emotional closeness, or physical contact.
‘I think that as a staff member, I wouldn't bring it up, but I think that it's up to the next-of-kin and patients to bring it up if they want to talk about existential issues. I don't think I would sit down and start talking about it if I don't notice that the person wants to or sort of opens up to it’ (AN, FGV).
Fear of making mistakes also meant that the professionals did not always actively listen or be receptive to conversations by making eye contact or being attentive to the signals that the patient or next-of-kin communicated in the form of questions or cues. Limited hospital stays were another obstacle to building trusting relationships and getting close to patients and their next-of-kin.
Next-of-kin’s worries, anger and frustration
At times, the next-of-kin were perceived as aggressive towards HCPs, which was interpreted as being afraid that death was near and that the next-of-kin were about to lose their loved one. According to the HCPs, the next-of-kin sometimes expressed worry or anger that no one was at hand for the patient or feared that the patient would be left to suffer and die alone. If the family could not talk to each other about their fears or had conflicted relationships, this was seen by the professionals as an obstacle to letting the patient go and allowing them to die peacefully.
‘Today, the next-of-kin don't always want to let their mum, dad, grandma, grandpa, or anyone in the family pass away in peace. They want the ill family member to go to the hospital and do all the examinations imaginable.... even if you are 103 and a half years old; you should have done it....’ (RN, FGIV).
Lack of time and feeling strained
Existential conversations with severely ill patients or their next-of-kin were not always possible due to the HCP’s lack of adequate communication skills or time. When patients or next-of-kin initiated existential conversations, it was not always possible for the HCPs to respond immediately, as they were busy or involved with other challenging care situations. The professionals also found it stressful and time-consuming to engage in conversations with patients who had not yet come to terms with the reality of their death. Furthermore, HCPs found it challenging to communicate with next-of-kin who lacked acceptance that death was imminent for their ill family member. In these conversations, the communication could become complicated and stressful by denials or attitudes that ‘no one must die’ or a sense that there was a lack of trust in the HCPs.
‘Two daughters said that if we didn't send their mom to hospital, they would report us to the police. Yes, that conversation about end-of-life was very demanding’ (RN, FGV).
Feelings of stress were also created when the HCPs realised there was a conflict between the next-of-kin and the patient. In these situations, the professionals were negatively affected emotionally.
Lack of continuous training in PC
Addressing existential concerns in conversations with patients was not universally perceived as an integrated and seamless aspect of caring across different contexts. Frequently, HCPs felt uncertain about how to talk to severely ill patients who expressed hopelessness and meaninglessness at the end-of-life. The RNs perceived the entire team to lack continuous training in existential conversations in PC.
‘... when you are new, i.e. new employees, there should be more training there directly in this [existential dialogue] than that you should learn the first time you stand there....’ (RN, FGVII).
Colleagues whose perspectives differed from those of the patient and next-of-kin due to cultural differences or a lack of strategies were challenging. This meant that HCPs who avoided talking about death and dying with patients or next-of-kin did not conduct any existential conversations. To learn and better respond and converse with patients and next-of-kin about existential issues, the HCPs expressed a need for continuous training. They also lacked training in basic conversation techniques, conducting conversations with people in crisis and grief and handling existential issues. Furthermore, the HCPs did not have access to continuous joint team supervision. While some professions such as physicians and hospital social workers had separate supervision sessions, RNs and ANs did not. Education and training in communication are crucial:
‘[To learn about communication] it is important to make it as dignified and nice as possible when next-of-kin come ... if they choose to come and say goodbye.’ (RN, FGVI).
Lack of support from colleagues
At times, HCPs felt there was a lack of support from the rest of the team and felt alone in conducting existential conversations with patients and next-of-kin, while temporary workers would ask someone else on the team to conduct existential conversations:
‘… if you work with temporary workers, they ask you: “Can you go and talk to the next-of-kin” because they may not know the patient as I do, so then I become the main person responsible for talking to the next-of-kin and so on’ (RN, FGVI).
The physicians were considered important for explaining medical issues and being part of existential conversations, but they did not always accept that responsibility. Instead, that rested primarily on RNs and ANs who lack the medical and professional mandate of physicians. The HCPs described different professions as having different roles in PC. For example, it was common for the ANs to refer to the RNs if they could not answer or handle questions from patients or next-of-kin. However, the HCPs were, for the most part, uncertain about how the healthcare organisation could assist regarding professional support. Consequently, they experienced a sense of being left to handle much on their own.
The emergent theoretical model for meaningful existential conversations in PC
The proposed model was developed from the data and captured the process of establishing a trusting and dignified relationship as a prerequisite for existential conversations in palliative care. The core category of maintaining presence was central to every aspect of the communication process (Figure 1). The process involved the different challenges and strategies professionals faced in existential conversations. Specific strategies were distinguished during the conversation process including: initiating early discussions about death (starting conversations on thoughts about death early), capturing wishes and needs (talking about memories and showing an interest in a patient’s life story), guiding the next-of-kin through the dying process (actively showing next-of-kin how to participate in the care of the dying person and the dead body) and upholding the professional role in the team (contributing with specific skills, values and attitudes in existential conversations, and collaborating with other disciplines). This could be going on in a process leading to new existential conversations, as long as the four inter-professional strategies to maintain the presence were activated. Certain hindrances were also noted throughout the conversation process, including: fear of making mistakes (not being attentive to the patient’s signs), next-of-kin’s worries, anger and frustration (when the next-of-kin feel that no one is available for their ill family member), lack of time and feeling strained, (engaged in many different, challenging situations), lack of continuous training in PC (needing supplementary education about existential conversations and lack of support from colleagues (feeling alone in carrying out existential discussions). If a trusting and dignified relationship was not established due to potential hindrances, meaningful existential conversations involving issues of life, dying and death did not occur.