«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
This chapter will describe CMOC in a different order to the other chapters in the thesis. The CMOC will begin with an explanation of the context and end with exploration of the outcome as this is how they were formulated. The chapter uses consultation recordings to test the impact of different combinations of contexts on the mechanism of ACP.
CMOC1 - High monitor and low blunter Context: Information seekers: GP-A and patient 1 (Mary) GP-A and Mary were both classified as high monitors and low blunters. High monitors are information seekers, those individuals who are likely to cognitively scan for, attend to and magnify threatening cues (Miller 1987). They have increased risk-related perceptions and higher levels of distress, regardless of their objective risk (Muris, de Jong et al. 1995, Schwartz, Lerman et al. 1995). Additionally, high monitors have increased anxiety about health risks and ruminate about information they perceive as threatening (Miller, Roussi et al. 1994, Muris, de Jongh et al. 1994, Miller, Rodoletz et al. 1996). Thus, it is likely that high monitors will wish to engage in preference discussions (seek information) and the ACP process in general.
Mechanism: Advance Care Planning Over a course of two consultation recordings GP-A and Mary review Mary’s locality advance care plan, which was completed prior to the recording. The GP
begins by seeking information on general well-being and function:
GP: “So are you having to get them (social care) to do any more for you?” Mary: “No. Empty the dishwasher and make the bed (laugh)” The conversation develops with Mary talking about her locality advance care plan.
The GP seeks information about who Mary feels is involved in her advance care plan. This is a way of ensuring that Mary understands the locality advance care plan and what has been stated on it. It also helps her to refine and develop it if and when her preferences change. Thus the GP is demonstrating their understanding that preferences and the locality advance care plan need to be reviewed regularly as patient’s preferences and needs are not static (resource). Mary explains that she prefers to stay at home and has all the support she needs.
Mary: “I feel safe here, I feel I know who I can call upon. And not just one person, two or three people I feel I could call upon. It gives me a great sense of security knowing all of the people who are involved in the, in the (advance) care plan really.” GP: “Sure ok. So who would you say is involved at the moment? If you were sort of to make a list.” Mary: “Well obviously you probably. Erm, the nurses. The community nurses, erm, the, Macmillan nurses, err…” Mary was very open to the notion of ACP when she found out about her terminal illness. This may have been due to her information seeking disposition (high monitoring score) and low information avoidance (low blunting score). Mary wished to know her options, discuss them and then have them formalised (reasoning).
GP: “So what difference do you think having that care plan or talking though the care plan actually makes, do you think it’s, do you think it’s a situation that you people knew about anyway, I think when we’d talked about it you’d already discussed it with your family.” Mary: “Yes I did. I did, as soon as I knew what the diagnosis was.
I felt, I don’t know how long I’ve got, I mean I might have a longer time or a shorter time but I just wanted something down in black and white.” Mary then states that she thinks the advance statement will need to be updated as time progresses and the GP reassures her that this can be completed as and when needed, indicating that the GP has a good knowledge of the ACP process (resource).
In this instance Mary is seeking information without asking questions.
Mary: “I mean obviously you don’t know what’s the future but you don’t know how much nursing care I might need (referring to hospice care), but I think I’ve got, yes. I’m very happy with (advance statement)…” GP: “And we can update it as things change, if things change.” Mary: “Yes, yes.” Discussions about the advance care plan between Mary and the GP then lead Mary to discuss other end-of-life issues, related to symptom management. She does this explicitly and implicitly, using questioning techniques and statements which seek confirming reassurance from the GP, respectively.
Mary: “Yes, as long as I’ve got a reasonably comfortable end, I’m sure I won’t be allowed to suffer unnecessarily will I?” GP: “Not if any of us have anything to do with it.”
GP: “Which we will.” *** Mary: “Well as you know I feel extremely calm about all that (death and dying).” GP: “Always been very calm.” Mary: “Because, erm, well I feel all the family, fortunately I’ve got a very loving family who know what my future’s going to be.” GP: “Sure.” Mary: “And what’s wrong with me. And also I have some good friends and neighbours and erm I don’t feel. I’m not afraid of dying. I’m just not afraid of it at all.” GP: “Mmm.” Mary: “As long as I’m not writhing in pain and they said oh well I don’t think I’ll be doing that.” GP: “No” *** Mary: “And as I say, I say I’m so lucky because I don’t have any pain and that’s the thing, I never have had and I still haven’t so.
But you don’t know do you? When it’s? what that’s? (laughs nervously).” GP: “Nobody knows.” Mary: “They don’t.” The GP then seeks information from Mary about how palliative and end-of-life care and her terminal illness affect her psychologically, in her thoughts and her decision making.
GP: “Have you been doing much thinking about what’s going to happen or what might happen?” Mary: “Erm, not, not a lot. Erm, I mean not so, not every day, particularly, sometimes, well sometimes when I’m awake in the night but no I don’t really worry about it if that’s, I’ve not got an anxiety about it.” In the quote above the GP seeks information to understand Mary’s psychological position in attending to her approaching end-of-life. This may help the GP to provide more sensitive or appropriate care (reasoning). The GP also seeks information about Mary’s decision making in relation to palliative care and investigative treatment. This demonstrates that the GP wishes to support Mary in her palliative care journey by avoiding aggressive treatment (resource).
GP: “So if he was to say to you at the clinic you know, we could do an endoscopy, we could… check this, what would you say?” Mary: “No thank you. I’ll be very grateful for what you’ve done, already to relieve the symptoms but no I don’t want any.” In summary, throughout the consultation recordings GP-A demonstrates that they have a good understanding of the ACP process (resource). Mary wished to know her options and have them formalised (reasoning) which was done through use of the locality advance care plan. Mary and GP-A have a good relationship, both seeking information from one another to aid understanding and facilitate conversations. This may be due to their matched high monitor and low blunter disposition (context).
Outcome: Locality advance care plan reviewed Mary demonstrates a strong ownership of her locality advance care plan throughout the consultation recording which may have resulted in her determined attitude towards palliative care, rejecting hypothetical investigative treatment. Mary and GP-A successfully review Mary’s locality ACP – a crucial step in the ACP process in order to ensure that preferences are current.
Figure 29: CMOC1, high monitor and low blunter.
Mary’s locality advance care plan was reviewed throughout this consultation recording (outcome) leaving Mary feeling in control of her care (outcome). It is reasonable to assume that this was due to the matched coping style, resulting in an inherent desire for information (context), the GPs efficient ACP skills (resource), and Mary’s desire to have her preferences formalised (reasoning). CMOC1 is displayed diagrammatically in Figure 29.
CMOC2 – High monitors and high blunters Context: Information seeker or avoider? GP-B and patient 2 (John) GP-B and John scored quite highly on the monitor and blunter scale. Blunters (also known in the literature as low monitors) are information avoiders and cognitively distract themselves from threatening cues. They tend to have low adherence to health behaviour regimes and therefore may underestimate their personal vulnerability for disease (Steptoe and O'Sullivan 1986). Individuals with a blunting coping style (low monitors) also use strategies such as distraction and denial when under stress (Miller 1980, Miller 1987, Bonk, France et al. 2001). Having a high score on the monitoring and blunting scales is unusual in that it means that GP-B and John both seek and avoid information. This makes it difficult to predict whether they will seek or avoid information. It could be that in different situations GP-B and John’s monitoring or blunting trait is prevalent.
Mechanism: Advance Care Planning In the two consultation recordings the GP does not broach ACP or discuss end-oflife issues (resource). Both John and the GP sought information from one another, but this was always related to generic care or social care rather than palliative or end-of-life care. For example, in the quote below John implicitly seeks information from the GP about a specific symptom he is experiencing when eating food.
John: “Well it’s funny because this (inaudible) mentioned about erm not being able to control me temperature when, when I’m eating food.”
John: “I’ll be sitting there, I’ll be eating a meal and, just little meals you know, by normal standards and me temperature goes through the roof. And I suddenly get this, you know this sort of, this dark area around me vision. Like I was getting when I had low blood pressure, we’ve checked the blood pressure once or twice and it aint, it aint that.”
John: “And then, then just as soon as you get back on the air again its five minutes and you’re fixed. So it’s psychological ish but I’m not really convinced.” *** John: “No, exactly. There was something, I seem to just pass water (urine) or some kind of mucus-y stuff.”
John: “I dunno if that’s worthy of worrying about or if it’s just the fact that there’s just nothing to come out.” GP: “Clear or?” John: “Clear, yeah.” GP: “I suspect its ok, just one of those things”.
The GP also seeks information from John in order to provide individualised care that is most appropriate. An example of this is in reference to contact with the Motor Neurones Disease (MND) team.
GP: “I mean, do you feel you want to be in contact with the (MND team) again or do you feel really, they’re not really going to add much more?” John: “It’s hard to say after, after this time. I mean I wouldn’t be (inaudible) because she was very good. But she’s come, she’s hiding very low isn’t she (asking wife to confirm)?” At one point in the first consultation John seems to attempt to discuss end-of-life issues, or certainly the deterioration of his condition. However, the GP gives him the opportunity to not discuss this any further (resource). Unfortunately a section of the transcript is inaudible and the GP cannot recall what John said. However, both John and his wife clearly do not wish to engage in discussions about end-of-life care (reasoning).
John: “That’s what the, really, what you’ve really gotta ask. I mean has a, has there been a deterioration, yes there has obviously. That’s what it (MND) does. (Inaudible).” GP: “We don’t need to talk about that today if you don’t want to.”
John’s wife: “No” It may be that the MND team have addressed palliative and end-of-life care issues with John and thus the GP feels that this aspect of care has already been addressed.
However, it would be presumed that end-of -life care would be provided by the GP and community nursing team, if a home death was desired. Thus, communication about end-of-life care with primary care is essential. GP-B does not attempt to engage John in preference discussions (resource) and John and his wife do not wish to discuss death and dying (reasoning). This may be due to their blunting scores (despite their equally high monitoring scores) and the associated tendency to avoid stressful information. Therefore, in this case, combined high monitoring and high blunting styles did not provide a favourable context for ACP to be initiated or reviewed.
Outcome: Advance care planning does not occur No preference discussions occurred and the locality advance care plan was not used.
John and GP-B have a good relationship and discuss general health care, but neither approach end-of-life care discussions, and both avoid this topic when it comes up spontaneously in the consultation.
Figure 30: CMOC2, high monitor and high blunter.
As displayed in Figure 30, neither preference discussions nor use of the locality advance care plan has occurred as the context was not as fertile for these important conversations to take place. Furthermore, the GP did not broach preference discussions when they occurred spontaneously in the consultation (resource) thus questioning his understanding of repeated attempts to engage patients in ACP.
Finally, the GP and the patient did not wish to discuss end-of-life care issues (reasoning), actually preferring to avoid these conversations.
CMOC3 - Low monitor and low blunter Context: Low monitoring and blunting scores: GP-C and patient 3 (Susan) Susan and GP-C were both classed as low monitor and low blunter. Therefore it is difficult to predict whether they will seek or avoid information about end-of-life care.
Mechanism: Advance Care Planning (not firing) Throughout the consultation the GP broaches preference discussions and the locality advance care plan several times (resource), where he sees appropriate opportunities to do so. Susan distracts herself from this as she wishes to avoid information about palliative and end-of-life care (reasoning).
Susan: “Listen, I’ve had friends ring me up or come and say “You’ve got your funeral arranged?”