The analysis of the interviews generated the following themes: The primary aim of advance care planning is to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with sensitivity during the conversations. ii) the answers from residents as well as next of kin regarding future treatment were often hesitant and unclear.
The primary aim of ACP: to build alliances with next of kin to avoid misunderstandings and future conflicts
Even though residents and next of kin were asked about future preferences, exploring resident preferences was not the main motivation for facilitating conversations concerning end-of-life care. Instead, nearly all participants described that the most important aim was to build alliances and come to some kind of agreement on future treatment with next of kin. The use of metaphors such as team, supporters and walking together (B44, E25, G18) underlines how much emphasis staff put on agreement with next of kin in order to avoid conflicts (G18), illuminated by the following quote: This is a conversation where we present how we see the resident’s state, and where we present how we think about medical treatment. I present some arguments about why we should change from active to palliative care…The aim is to find, or come to a common view about the resident, with the next of kin. To us, everything is logical and clear, but family members do not necessarily think the way we do. The conversation prevents misunderstandings and accusations between staff and next of kin when the time comes. We ask whether they agree with our understanding (C5, C9, C40).
Obtaining shared views could, however, take some time. Next of kin were described as needing time to digest information (F25), and as ‘ready’ if they have seen the same as us, have the same thoughts (C23). However, some family members never accept that their loved ones are dying: you may have told them, but the message is not received…it is difficult if your view is not shared with close family members. Some need a long time even if the time is limited (D 44).
The staff also found disagreement among next of kin difficult to handle: you are talking to one family member today, and another tomorrow, and he or she might think quite differently. That is a challenge. It is essential to talk to the right person (E26). According to one physician, next of kin could also have problems understanding their role and responsibility in the decision-making process: …and we talk to them (next of kin) face to face, and explain what their role in the decision-making hierarchy is and who makes the final decision. We find that some become somewhat unsure about their role; they become angry and we often have many discussions with them. This might lead to a difficult terminal phase; it can become a nightmare (B40).
Main experiences with ACP
Balancing directness with sensitivity
The physicians described how they had developed their own, personal way of raising the question about future life-prolonging treatment, shaped by experiences and feedback from next of kin: My experience is that next of kin appreciate that physicians are direct and concrete because many health care professionals are not. They like that someone dares to talk about it (E39). And: I want it to be clear what we are talking about; no one should wonder after the ACP-conversation; what were we talking about? I find that people appreciate that I am clear (A36). However, being direct and clear had to be balanced with sensitivity and openness to diversity: Residents are very diverse people, and some know what they want and some do not (G9). Physicians described how they tried to perceive the situation: sense where the resident and next of kin ‘are’, and feel how the conversation is going (G2, A35). The questions that residents had to answer were described as sensitive (B62), and one physician talked about this heavy stuff when reflecting on what kind of information he needed from residents (B56).
In general, all staff members expressed that they found being part of and facilitating advance care planning stressful, hard and demanding, but particularly for the physicians (B16, F78, D 36). Even if the physicians had years of experience with communication about end-of-life care, they expressed how ACP takes a lot of doing (G33) and how one feels put out of action in such situations (F27).
Hesitant and unclear answers
The staff members shared the view that clear preferences or wishes from the residents who participated in ACP were rare. Particularly when residents were asked if they wanted to go to the hospital in the case of serious illness, or when they were asked questions about future medical treatment, answers from residents could be hesitant and unclear. The professionals told that: Often, we do not get clear answers from these conversations (F6). Some have clear opinions about end-of-life care, but in this conversation; she did not tell us much about what she wanted. She wanted to be safe and to be cared for, but she did not have any opinions yet (G9, G14). Interestingly, even if the resident in the last quote expresses views concerning her well-being, it seems like this is not understood as relevant for staff, who want ‘opinions’ on treatment alternatives.
According to the nursing home professionals, usually residents with mild dementia were involved in ACP, but one physician stated: I am sorry to say, but patients are too ill and too impaired to take part in ACP. They are not able to. Our ambition is that they should take part in planning for the future, but it hasn’t happened once (C32). In addition, residents with aphasia could be particularly challenging to understand: First, I thought that she was positive, but then she started to cry which made me think – what does she want? I agree that her answer is in a grey area…it was difficult to read her (A18–19). Trying to understand what the residents wanted, the staff would interpret residents’ body language (F10), facial expressions, as well as moods (B 23, D32). Hesitant and unclear answers also came from next of kin. The participants described next of kin as being in a very difficult position when asked for views and preferences on behalf of their loved ones: it is not easy for them. They wonder if they have contributed to the right decision. They want to wait – they want to postpone the conversation about future decision-making until the dying process has started (F31, F 80). And: There are many people who haven’t discussed these matters, and as her husband said: we have never talked about this, and the son says that he has to think through what he would have wanted for himself. It is difficult to answer for a mother or a spouse. I think we have to accept that clear answers are rare (C28).