«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
Susan: “Have you decided what you’re having? I says I’m not going anywhere (laughs). I thought they were friends?” GP: “Yeah but it’s interesting because people deal with things in different ways.”
Susan: “Oh well we’ve got enough to cover a funeral.” GP: “Yeah.” In the above quote Susan avoids focusing on preference discussions in relation to health care by turning the conversation to an unemotionally charged issue, finances.
The GP recognises this and doesn’t persist with this line of inquiry (resource). This is important as preference discussions must be entered into mutually. In the quote below Susan refers to the locality advance care plan which the GP had given her to look at (uncompleted) in a previous consultation. Susan avoids approaching information about the plan by changing the focus of the conversation to generic physical symptoms (reasoning). The GP persists in pursuing Susan’s preferences on this occasion by asking how her husband would feel about the locality advance care plan (resource). It is highlighted that Susan’s husband may also have a low monitoring style or a high blunting style.
Susan: “But never mind I’m still here.” GP: “You are still here.” Susan: “I’m still here and that’s the main thing.” GP: “And your positive thinking has been a real feature in how you’ve dealt with it you know, it’s the…” Susan: “You’ve got to be. As I say I was on a bit of a downer yesterday after I sat and read that and I’d been busy and err, but today I’m fine. I just put it away out of my mind.”
Susan: “So, but I’ve got no other problems apart from me tongue and my fingers, that’s all.” GP: “Yeah. What would, what would (husband) think about a conversation along those lines? Would he be the same as you, would he not want to get involved or?” Susan: “I don’t know. I know he gets anxious. And he gets angry, with me.”
Susan: “Very impatient. But he doesn’t talk about it.” The consultation also reveals that Susan’s daughter may have a low monitoring or high blunting style, as she too does not wish to discuss palliative and end-of-life care with her mother.
GP: “Right. And what, what, conversations you’ve had with your daughter, have you had conversations about what happens if?” Susan: “No.”
Susan: “No. She’ll just say I don’t want to know mam.” GP: “So you’re all doing the I don’t want to know bit? (laughs).” Susan: “Yes (laughs).” The consultation indicates that Susan has had few opportunities to discuss her palliative and end-of-life care preferences with her family, but she also does not currently wish to engage in these discussions with the GP (reasoning). The GP attempts to explain the concept of ACP to Susan, as an attempt to allow her to engage with it and discuss her preferences (resource).
GP: “So just thinking about that, one of the, one of the things that we don’t want to do is cause you any more distress in any way, in any point in the future. And, and sort of, one of the ways that we can help with that is sort of through this advance care planning idea, thinking about how we want things to go for you and work if and when.” Susan: “If and when. Might get knocked over.” GP: “So, it’s more, it’s more about that and just ensuring things and I, I don’t necessarily want to talk about that in detail today…” Susan: “No, course not.” GP: “But if you, it’s just a few things to, to think about and so that we know what you want.” GP: “Erm, because I think it’s sort of, it’s awful if you get there too late and there’s a panic situation, something happens that somebody wouldn’t have wanted, and again, this isn’t going to happen to you, but they become demented and they can’t make a, make a decision…” Susan: “A decision.” GP: “…at that point. So we’re just trying to get in there and find out what people’s views are. What they feel. So that we can look after that and make sure that it’s written down. And the different aspects of that to think about are, sort of where you’d like to be at the end of your life, whether it’s at home...” Susan: “Mmm.” GP: “…In a hospice, or in a hospital, or in a nursing home, where would you like to be? Err in the understanding that we can make any of those things happen quite easily.” Susan: “Mhm.” Susan seems to display characteristics of denial (reasoning) when the GP tries to explain ACP, stating that she may not die of cancer but in an accident. Throughout the interview Susan makes many statements that could suggest that she is experiencing denial about her terminal illness and approaching end-of-life.
Susan: “And I’ve never shed a tear.” GP: “No I know you haven’t, and that’s quite unusual. Are you proud of that or is that sort of something you feel?” Susan: “No. I just don’t feel like it.” GP: “Just don’t feel like it.” Susan: “No.” GP: “Yeah. OK.” Susan: “She would have been in floods of tears this friend of mine.” GP: “Do you feel like it’s (upset) there waiting or do you just not feel like it’s there?” Susan: “Once or twice I’ve thought, oh, you know, I could sit down and cry but I don’t.”
Susan states that she has never become upset about her condition or prognosis. It may be that Susan avoids information due to her denial or a fear that information may upset her (reasoning). Susan also shows denial when discussing the type of tumour she has, indicating that she still believes there is a chance that her cancer is not terminal (reasoning).
Susan: “You just, as I say, you’ve just got to take what comes. And then send it back.” GP: “No, you can’t.” Susan: (Laughs) “Well they are doing experiments on me tumours so.” GP: “Yeah they keep them for a while. Especially, tumours like yours that are quite rare and quite unusual.” Susan: “I’m different.” GP: “And present in a different way and have them puzzled for a bit. Yeah, those, those, they’ll want to do a bit of that.” Susan: “Yeah she said, she says that I’m unique.” GP: “Yeah. That’s good (laughs).” Susan: “Course it is, one off (laughs). I’ll surprise them all yet. I hope.” GP: “Well yeah. And there’s no reason why, why you, why you shouldn’t. And sort of talking about things doesn’t make things happen, you know.” Susan: “Course it doesn’t.” GP: “And I know you know that. But it’s all that kind of, sometimes there’s that kind of block.” (Susan changes the topic of conversation) This relates to CMOC2 in chapter 6 (Preference discussions and the locality advance care plan, p.199), which identified that health care professionals often find it difficult to broach preference discussions as this may destroy patients hopes that can often come from secondary care. In Susan’s situation it seems that secondary care have told her that her tumour is unique, rather than being explicitly over optimistic about prognosis. Yet Susan has construed this information as good news about her illness, that it may potentially be treatable. The transcript highlights how difficult it is for health care professionals to engage patients in ACP when they have false hope. Despite this the GP gives Susan several opportunities to engage in preference discussions and enter the ACP process (resource). Feeling at peace with dying was scored variably by GPs and bereaved relatives who answered the related question in the QDDM (Curtis, Patrick et al. 2002). Palliative care, preference discussions and ACP are difficult frameworks to operate within due to the sensitive nature of death and dying. However, if patients and their family members are able to express their holistic hopes and fears about death and dying through palliative preference discussions and use of the locality advance care plan this may start a process of acceptance. However, Susan is currently not ready to engage in this process. The GP therefore cannot currently help Susan in accepting her terminal diagnosis. Yet it is important that the GP continues to give Susan opportunities to engage in preference discussions (resource), as he does throughout the consultation.
Susan does not seek information about her palliative or end-of-life care (reasoning), which is stereotypical of the blunting trait, as opposed to monitoring. Thus since Susan scored low for both monitoring and blunting it may be that her blunting trait is more predominant in this situation. As aforementioned, individuals with a blunting coping style use strategies such as distraction and denial when under stress (Miller 1980, Miller 1987, Bonk, France et al. 2001), thus Susan’s denial may be related to her predominant blunting trait (context). Susan may be worried that information will upset her or may not wish to be given information as she will not accept it due to the denial she is experiencing about her prognosis (reasoning).
Outcome: Advance care planning does not occur Susan does not engage in preference discussions or the ACP process in general and therefore makes no plans for her end-of-life care.
Figure 31: CMOC3, low monitor and low blunter Susan’s blunting trait seems predominant in this consultation (context). The GP makes repeated and varied efforts to broach important preference discussions (resource) but Susan avoids the information (reasoning). This may be due to her denial. Therefore, in this context no ACP occurs (outcome). This CMOC is displayed diagrammatically in Figure 31.
Formulation of a new CMOC The data offers a valuable and rare insight into difficult conversations surrounding palliative and end-of-life care but is still very limited. However, from the data discussed the CMOC matrix can be revised (Table 13). This table takes into account that some of the patients and GPs scored high on both the monitoring and blunting scale (GP-B and John), or low on both the monitoring and blunting scale (GP-C and Susan). It would seem that this shouldn’t be possible, as high monitors would seek information and high blunters would avoid information. However, it may be that classifying people as either high or low is unhelpful, it may be that one trait is stronger in some circumstances than others, as in Susan’s case. Furthermore, it must be noted that the blunting score is not validated but the monitoring score is. This would suggest that participants’ monitoring scores are a more valid and robust representation of their disposition due to the scores predictive validity (Petersson, Nordin et al. 2002). Susan still scored low on the monitoring score so it may be that she would still avoid information.
Table 13: CMOC for monitoring and blunting based on data from the study.
Chapter Summary This analysis indicates that GPs and patients who are both low blunters and high monitors may be more successful in partnership at engaging with preference discussions and using the locality advance care plan. Although a CMOC can be formed based on monitoring and blunting scores and consultation outcomes, they offer little final explanatory potential. This is because patients are individual and their reasoning behind whether they wish to engage in ACP may change as their illness progresses. Alternatively, they may be open to ACP when it is first broached.
Classifying patients as monitors or blunters does not allow for changes in context.
Dr. Miller stated that monitoring and blunting are traits but that patients can be affected by situational factors (p.107). It may be that blunters are not willing to engage in ACP early in their terminal diagnosis but will become more open to information as their illness progresses. Thus classifying patients as monitors or blunters masks how context can change and impact on reasoning and thus patients’ behaviour changes over time. Furthermore, classifying patients poses the inherent risk of ignoring the individuality of patients; although information seeking and avoidance is important, the context of the person’s illness, their background and their general personality are also all important. GPs must react to the patient’s reasoning (which can change over time) and use this as a trigger for their own reasoning in order to ensure that ACP is entered into mutually. Monitoring and blunting scores may provide a framework to inform whether patients and GPs are likely to engage with or broach ACP when they are first presented with it, but they are not informative past this point due to interactive factors between the GP and patient and individual differences of both parties. Furthermore, it is unknown how many times these patients had been approached with ACP before the consultation recordings. It may be that the recording was taken when preference discussions were first broached, thus some patients (John and Susan) may not have been ready to engage; alternatively Mary may have had ACP attempted several times before she engaged and then reviewed them in her consultation recordings. Also, as discussed in a previous chapter (Chapter 6: Preference discussions and the locality Advance Care Plan, p.199), health care professionals do not have a strong ownership of the locality advance care plan due to issues surrounding time constraints and capacity. Therefore the outcomes of consultations may also be affected by this lack of ownership.
The findings do highlight the difficulties in being proactive and in engaging patients in shared decision making. Although shared decision making is promoted by the NHS there are difficulties in implementing this in practice that are not only attributable to professionals’ willingness to do so. Patients are sometimes not willing to engage and this may be due to their monitoring or blunting characteristics. However, repeated opportunities for patients to engage in ACP are crucial, as despite personal characteristics, desire for information is not static.
The MBSS scale is subject to several different interpretations. If the MBSS creators’ standard approach is used, that of only using the monitoring scale and classifying participants as either high or low monitors, then the study results are extremely difficult to interpret given the literature base about information seeking and avoiding related to the disposition. For example, John is classified as a high monitor but avoids information.