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«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»

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GP3: “A factor in the worldwide view is the mental capacity act, because I think that that is agonised over most and trying to do them (advance care plans), does this patient have the mental capacity to make these, these questions I was trying to ask them, so, but I mean, I would agree patient’s and carers, but the mental capacity act most certainly has an impact.” The quote above identifies that health care professionals are aware that the locality advance care plan (and all ACP) must be carried out with those who have capacity, and the MCA therefore has an impact on how they manage their use of locality advance care plans in practice. GP1 explains how this affects her use of ACP.

GP1 (FG1): “I go to the same care home every week and see little old ladies and not one of them recognises me, because they have dementia and therefore advance care planning is not feasible” The quote above highlights how GP1 feels that ACP is not appropriate for a proportion of the palliative care population.


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Figure 27: CMOC4, the MCA and the locality advance care plan A diagrammatic explanation of CMOC3 is provided (Figure 27). The underlying principles of MCA (Justice 2007) mean that individuals must have capacity for the decisions they make (context). This makes it difficult for health care professionals to carry out locality advance care plans or ACP in general (resource), as capacity can be unstable. This gives health care professionals a fear of repercussions (reasoning) suggesting that they have low confidence in assessing mental capacity.

This has resulted in no significant increase in the use of locality advance care plans from 2009 to 2012 (outcome).

CMOC5 – A change to the advance statement from Deciding Right CMOC 5 describes a change that occurred within the locality, partly as a result of the focus group discussions that took place as part of this PhD, and provided information on health care professionals’ perceptions of the locality advance care plan.

Outcome: The locality changed to the use of the advance statement The discussions with the Palliative Care Partnership and the focus groups prompted the change to the advance statement and the use of other tools from Deciding Right (NHS North East 2012). The use of the advance statement may potentially result in an increase in advance statements (previously the locality advance care plan) in the future.

Mechanism: The advance statement The focus groups identified that health care professionals were not comfortable using the locality advance care plan. Participants felt that it was time consuming;

they were confused about where to write and thought that a lot of the questions were unnecessary.

GP3 (FG1): “I would definitely vote for that because I was definitely put off by the amount of detail in the present (locality) advance care plan. I look at it and think where should I write? I mean the difficulty of mental capacity, the present document makes it even more difficult. Does this person have mental capacity for all of this document or for bits of it?” GP3 (FG2): “Our staff didn’t know where to write, and as a GP I would include myself in that, I used to write on any page I could find to write on.” A tailored, shorter version was required. This resource was offered in the form of the advance statement, one of the tools provided in the Deciding Right documentation (NHS North East 2012). Both myself and the PCP thought that the advance statement would be more user friendly and may encourage health care professionals to complete advance statements (reasoning).

Context: The locality advance care plan is not user friendly The locality advance care plan was not being used by focus group participants (health care professionals) as it was time consuming and not user friendly.


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Figure 28: CMOC5, a change to the advance statement from deciding right The advance statement is a shorter document which may mean that less paper work is generated for health care professionals. They may therefore be more likely to engage with it and use it as a tool to help patient plan their care, as opposed to relying on preference discussions. However, the change does not affect health care professionals’ fear of repercussions from assessing unstable capacity. Although, Deciding Right, the documentation that provides the advance statement, does offer clear instructions on assessing mental capacity and the health care professionals in the locality have now (post data collection) had workshops on using Deciding

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diagrammatically in Figure 28) indicates that the locality advance care plan was not user friendly (context). The advance statement (resource) was a more concise document that may encourage health care professionals to engage with it (reasoning). This resulted in a change to the advance statement (outcome). This CMOC is also presented to demonstrate how the ICP is not a static intervention, but in itself responds to evolving contexts and new mechanisms. Therefore, whilst this PhD is an evaluation of the ICP, it also contributed to its development over time.

Chapter Summary It has been highlighted that preference discussions are increasing (outcome) and often happen when patients’ condition or needs change (context). The increase in preference discussions may be due to the ICP framework (resource) which encourages health care professionals to engage in preference discussions, to be proactive and patient centred. Health care professionals have a desire to be patient centred and provide high quality palliative care to facilitate the patient’s good death (reasoning). However, preference discussions can happen late in the patient’s illness trajectory (outcome), as they approach end-of-life; this can happen when health care professionals feel that patients have false hope about their prognosis (context), which will often come from secondary care treatment providers. Preference discussions do not predict the use of the locality advance care plan (outcome). The decision by health care professionals not to use the locality advance care plan (resource) may be due to the amount of paper work it generates, which is not feasible to complete (reasoning) in a time constrained environment such as primary care (context). This is supported by no significant increase in use of the locality advance care plan from 2009 to 2012 (outcome). This could be partly explained by the need to complete the locality advance care plan with those who have capacity (context), when capacity can be unstable, as assessed by the MCA (Justice 2007) (resource). This results in health care professionals having fear of repercussions from inaccurately assessing the patient as having capacity and engaging in (documented) care planning with them. However, now the study and Palliative Care Partnership have prompted the change to the advance statement, and the locality has had workshops focusing on mental capacity and the use of Deciding Right (NHS North East 2012), there may be an increase in the advance statements (that replaced the locality advance care plan) completed.

From the analysis it appears that health care professionals engage in preference discussions more readily than they use the locality advance care plan. This may be due to issues surrounding the implementation of the locality advance care plan.

Health care professionals felt that using the locality advance care plan was difficult, due to capacity issues and time constraints. Time to complete advance care plans has previously been highlighted as an issue in the literature (Seymour, Almack et al.

2010). In a study on advance directives it was found that nursing staff had very low rates of advance directive completion despite most nurses feeling that advance directives were valuable to the patient (Duke and Thompson 2007). This was attributed to the need for more resources including administrative support and time to engage in the process. Similar results were found in this study, with health care professionals seeing the need and value of the locality advance care plan, but not having the time or administrative support to carry it out. Without the resources to implement documented care plans, despite the potential of the tool to empower patients, health care professionals will not feel able to use it and therefore will have no ownership of it.

Programme theory 3 stated that there would be an increase in the use of preference discussions and the locality advance care plan (outcome), as health care professionals become more confident with broaching the subject of death and dying with patients (mechanism), and aware of the importance of having and documenting preference discussions, which has been highlighted by recent policy (context). This programme theory is not wholly supported by the findings. Preference discussions are increasing (outcome) but can sometimes occur late in a patient’s illness (outcome), when they are approaching end-of-life. A change in the patient’s condition or need (context) would prompt health care professionals to broach preference discussions with the desire to be patient centred (mechanism). When preference discussions occurred late it was due to patients having false hope (context). Thus, in order for preference discussions to occur (outcome), health care professionals seem to need some reassurance that they initiate this delicate conversation at the appropriate time: a change in condition or need, or the patient’s acceptance that they are in their final illness (refusing aggressive palliative treatment from secondary care). This allows the health care professional to then work within a palliative care framework, being patient centred and broaching preference discussions. Thus, a refined programme theory can be created for preference discussions. A change in the patient’s illness progression, in terms of condition deterioration, increased need or psychological acceptance (context), allows health care professionals to be patient centred and address sensitive issues at an appropriate time for the patient (reasoning), using preference discussions (resource). This has resulted in an increase in preference discussions from 2008 to

2012. Health care professionals also noted that often patients themselves would broach conversations about their preferences and wishes for end-of-life, but data was insufficient to support a CMOC for this. However, the programme theory (3) does not support the findings for use of the locality advance care plan. Use of the locality advance care plan has not increased from 2008 to 2012 (outcome), and preference discussions do not predict the use of the locality advance care plan (outcome). The explanation for this is related to the pragmatic issue of the time consuming paper work the locality advance care plan generates (mechanism), and difficulties in assessing capacity (which can be unstable) using the MCA (mechanism).

This chapter has identified that documenting patients’ preferences can be difficult.

The next chapter will explore the potential of an information seeking and avoiding explanatory framework (monitoring and blunting) in facilitating consultations about palliative and end-of-life care, which often include preference discussions and ACP.

Chapter 7: Facilitating difficult conversations in palliative care Clinicians need to create several opportunities for patients to engage in discussions about their future and end-of-life care (Barclay 2010). These discussions need to be guided by the patient as to timing, pace, and content. However, GPs must also be respectful of the wishes of those who do not want to discuss such matters but continue to give opportunities at different consultations to engage in discussions about end-of-life care (Barclay 2010). Thus, health care professionals must be respectful of those who both seek and avoid chances to engage in information sharing about end-of-life care.

Initial questions asked of the data The programme theory and subsidiary questions that this chapter focuses on were

first stated in the methodology chapter as:

 Programme theory 4: Innate coping style of the GP and patient (context) will facilitate a consultation if matched (mechanism), making a preference discussion and use of the locality advance care plan more likely to occur

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- Are matched coping style consultations more successful (in terms of producing outcomes such as preference discussions and advance care plans).

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This chapter focuses on the micro, concentrating on interactions between one patient and one GP in each CMOC to unpack the effects of coping style. From the programme theory and knowledge about monitoring and blunting styles a CMOC matrix was devised (Table 11).

Table 11: CMOC matrix, matched monitoring and blunting health care professional-patient interactions and the outcomes they can result in.

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Consultations were recorded between three patients and their GPS. MBSS scores are out of 16 for both monitoring and blunting and are displayed in the table below (Table 12). A score of 10 or above for monitoring is considered a high monitor, thus two of the GP and patient pairs were high monitors (GP-A and Mary, GP-B and John) and one of the pairs were low monitors (GP-B and Susan). However, the same low monitor pair also had low blunter scores, as did GP-A and Mary. GP-B and John who had high monitor scores also had high blunter scores. The MBSS creators do not provide a score to define high and low blunters but in comparison to the other patients, GP-B and John have much higher blunting scores (8/16 and 9/16, respectively).

Table 12: Monitoring and blunting scores out of 16 for GPs and patients.

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Table 12 indicates that the patients and health care professionals are quite well matched in terms of their monitoring and blunting scores. Thus if the programme theory is correct, it would be predicted that GP-A and Mary are most likely to have a consultation that includes ACP (preference discussions and use of the locality advance care plan), as they both have a high monitoring score and low blunting score. GP-B and John have high monitoring scores but also have high blunting scores. GP-C and Susan have slightly lower monitoring scores than the other two GP-patient partnerships but also have low blunting scores.

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