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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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Thus, it explains why in some practices the overall programme theory worked better (due to enhanced shared decision making facilitated by peer opinion leaders and a champion). The champion and opinion leaders can be considered as technical and managerial – they have an expert knowledge of palliative care and are respected within their organisations so could be considered within a managerial role which pushes the palliative agenda at MDT meetings. The need for not only clinical expertise in palliative care but also administrative and policy leadership in the implementation of new initiatives has been identified in the literature (Weissman 2003, Murray, Barclay et al. 2008, Walshe, Caress et al. 2008). However, there is currently no literature on the effect that champions or peer opinion leads have on professional or clinical outcomes in palliative care provided by primary care, only the description of the need for them. The findings of this study contribute to the Greenhalgh model (Figure 41) in that they highlight the importance of champions and opinion leads in palliative and end-of-life care. The practices that had a champion or opinion lead had implemented the ICP in a more structured way; they can be considered to be closer to the ‘Make it happen’ end of the scale (Figure 41) and may have used shared decision making within the practice more frequently (in part also due to more frequent MDT meetings). Alternatively, the practices that did not have strong peer support can be considered to be in closer proximity to the ‘Let it happen’ end of the scale. Thus it is vital to understand as much as possible about opinion leaders and champions who have the potential to persuade other health care professionals to change their practice and how they work to aid implementation and embeddedness of new initiatives (Locock, Dopson et al. 2001). The presence of opinion leads or champions may mean that the overall programme theory can work better because shared decision making between health care professionals is improved and the agenda is directed to include discussions about the ICP. Shared decision making between health care professionals warrants further investigation and understanding in terms of the positive results it can have in practice.

Shared decision making was conceptualised and implemented around twenty years ago and constituted one of the biggest reforms of the 1990s (Balster Liontos 1994).

However, it has been developed and understood more in recent times, with previous forms of shared decision making being more health care professional focused as opposed to an equal input from two experts. However, this thesis highlights that shared decision making in palliative care could advance further (to acknowledge the role of significant others surrounding patients and to recognise shared decision making between health care professionals) and is an essential mechanism in the overall programme theory for the ICP.

Patient centred care Research focusing on advance directives and living wills (that are no longer in use now but have the same principles as ACP) has shown that although patients have positive attitudes towards these tools, they seldom complete them (Joos, Reuler et al. 1993, Kelner and Bourgeault 1993, Singer, Choudhry et al. 1995). The findings from this thesis support this, in that preference discussions occur more than is formally documented (Chapter 6, p.199). Furthermore in the past, interventions to increase advance directives only had modest effects (Luptak and Boult 1994, Markson, Fanale et al. 1994, Hanson, Tulsky et al. 1997). Related to this, ACP interventions have been found to have no impact on the number of DNACPR forms completed; patient-health care professional agreement on treatment options; days in the intensive care unit; pain or use of hospital resources (The SUPPORT Principal Investigators 1995). Furthermore, a review of ACP and advance directives concluded that advance treatment preferences are difficult to form, communicate and implement (Miles, Koepp et al. 1996). ACP is underpinned by theoretical concepts from law (Justice 2007) and ethics (autonomy and beneficence) (Gillon

1994) and has a focus on stating preferences for those who may lose capacity (Department of Health 2008, Robinson, Bamford et al. 2010). Thus the difference between ACP and care planning more generally is that ACP will usually take place when there is an anticipation of deterioration in the individual’s condition in the future, with associated loss of capacity for decisions and/or ability to communicate choices to others (Department of Health 2008). However, this thesis highlights that ACP was carried out with people who were unlikely to lose capacity, including those with cancer diagnoses, despite its main aim to capitalise on autonomy whilst it is present. This study suggests that preference discussions and use of the locality advance care plans were resources of the mechanism, to implement patient centred care into practice, through a multi component communication strategy that should include the patient’s family and/or carers. A model by Martin, Thiel et al. (1999) can be used to explain the mechanism of the programme theory. This model found that from the perspective of participants, the primary goal of ACP was preparation for death which consisted of three facets. Firstly, ACP was a way of facing death, it provides a tool to confront and accept death, plan goals and outline situations that the patient might wish to avoid. This provides the patient with a sense of fulfilment.

Secondly, it allowed patients to express their treatment preferences, regardless of whether it was predicted that they would lose capacity, and provided patients with a sense of control. Finally, it allowed patients to communicate with loved ones about their death and relieved the burden of them potentially witnessing a prolonged death or having to make decisions for the patient (Martin, Thiel et al. 1999). The findings from this thesis suggest that a multi component communication strategy using ACP is the overall effective mechanism of the ICP which allows health care professionals, patients, family members and carers to plan for a good death.

Although the findings suggested barriers to using the locality advance care plan (time constraints and fear of incorrect assessments of capacity), the model has explanatory potential as to why preference discussions are sometimes perceived as sufficient for patients, as they allow for the three stages to occur without formal documentation. Additionally, the overall programme theory stated above (Figure 40), with open communication strategies using shared decision making as a crucial mechanism would also support this, suggesting that preference discussions may (in some cases) be sufficient to support open communication strategies without formal documentation. Whilst it is recognised that documenting preferences (using the locality advance care plan or advance statement) is important in order to inform other care providers of patients’ preferences (for example, OOHs and ambulance services) and may strengthen the multicomponent shared decision making mechanism, it could be that the formal documentation of preferences may be more important for those at risk of losing capacity. Thus, the model by Martin, Thiel et al.

(1999) switches the primary focus of the goals of ACP from ethical and lawful (where capitalising on capacity is the priority) to psychosocial. Using this model, and the overall programme theory stated at the beginning of this chapter, ACP is a translational tool/mechanism to encourage patient centred care through multipartite shared decision making. Furthermore, the Martin, Thiel et al. (1999) model is more in tune with the psychosocial ethos of palliative care. It has explanatory potential as to why GPs and patients often have positive attitudes towards advance care plans but do not complete one, as they can achieve their psychosocial goals without documenting them formally (just through preference discussions). Furthermore, Martin, Thiel et al. (1999) suggest that the goal of ACP should be to strengthen relationships with loved ones, not necessarily the health care professional – thus substantiating the claim earlier that shared decision making should be understood as a multi component communication strategy, which plays a key role as a mechanism in the overall programme theory. Thus the findings and overall programme theory from this thesis build upon the Martin, Thiel et al. (1999) model, indicating that ACP is a tool to provide patient and family centred palliative care. As identified in this study, the reasoning behind initiating preference discussions was health care professionals’ desire to enhance their patient centred practice rather than to prepare for loss of capacity (Chapter 6, p.199). It is reasonable to assert that now that the use of the advance statement is in place (overcoming some time constraints) and training on capacity assessment has been provided, the reasoning behind the use of the advance statement will also be to provide patient centred care. The overall programme theory highlights that having preference discussions and completing a locality advance care plan, advance statement or DNACPR (collectively known as using ACP) is not an end in itself. It can be considered as a mechanism that can facilitate palliative care discussions and meet the overall psychosocial goals that the patient may have (Martin, Thiel et al. 1999), which then facilitates proactive and patient centred care. This model supports the mechanism of the overall programme theory in this study suggesting that ACP is a translational shared decision making mechanism for patient centred and proactive care. The thesis contributes to this model suggesting that patients’ family members and carers should always be involved in shared decision making and ACP.

Proactivity The use of multicomponent shared decision making that includes ACP (mechanism) is also a way for health care professionals to work proactively as it allows for them to put in place the relevant requirements for the patient’s preferences. There is an inherent need for palliative care to be proactive through early identification and impeccable assessment and treatment (Froggatt and Hoult 2002, Norton, Hogan et al. 2007, Burns, Johnson et al. 2008). Proactivity was identified as a common theme throughout the findings (for example, Chapter 4, Embeddedness, CMOC3 context focused on the drive to provide patient centred and proactive care; Chapter 5, Identifying and registering palliative care patients, CMOC2, health care professionals found it difficult to work proactively with those who had non-cancer illnesses; Chapter 6, Preference discussions and the locality advance care plan, CMOC1, the reasoning behind initiating preference discussions was to provide proactive care) and can be considered as an integral part of the mechanism in the overall programme theory; thus it is essential in the provision of successful palliative and end-of-life care. The GSF is centred on proactive and patient centred care (Thomas 2003, The National Gold Standards Framework Centre 2009) and the ICP uses some of the same tools. However, the GSF relates the tools’ beneficial effect to enhanced coordination and communication rather than proactivity (Hansford and Meehan 2007). However, the reasoning that these tools trigger in health care professionals has previously never been explored – the overall programme theory highlights that they provide enhanced confidence that a patient is appropriate for palliative care. Thus they are tools that can enhance proactive working in palliative care.

The findings also identified barriers to working proactively: complexity of noncancer illnesses, time constraints, the avoidance of diminishing patients’ hopes, and lack of confidence in assessing capacity. All of these barriers have an impact on whether the overall programme theory mechanism can fire and thus could be considered as inhibiting contexts.

The unpredictable trajectory of non-cancer illnesses was a barrier to working proactively and the risk of ‘prognostic paralysis’ (Stewart and McMurray 2002), as described in the literature, was confirmed in this thesis. Prognostic paralysis is exhibited by health care professionals for patients with uncertain illness trajectories and involved prevarication when considering palliative care issues (Stewart and McMurray 2002). Although estimating prognosis is an inexact science, health care professionals must avoid not prognosticating at all (prognostic paralysis) (Murray 2005). The unpredictable trajectory of non-cancer patients is recognised in the literature and in practice; however this has not been related to the difficulties of placing palliative care patients on a register. Related to prognostics, health care professionals in this study identified a marker for change from curative care to palliative care; a change in patients’ condition or needs. The context of the overall programme theory requires healthcare professionals to have consensual definitions of active care, palliative care and end-of-life care. This marker can only be used in this conducive context. A change in the patient’s condition or needs is a non-time dependent marker that has not previously been explored in relation to how this affects the use of proactive palliative care tools (such as ACP). This marker allowed for national policy (palliative care for all regardless of diagnosis) (Department of Health 2008) to be translated into practice in a context conducive to the shared decision making mechanism. Thus, this informal marker, based on well-developed knowledge of a patient and their overall trajectory, is a valuable part of the context which allows palliative care conversations to be initiated and timely progression from curative care.

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