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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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The whole ICP can be construed as a CMOC encompassing the findings of all the programme theories refined throughout this thesis. A good, preference based death with the holistic needs of a palliative care patient addressed (outcome) is achieved when patients are identified early by a GP practice that collectively has a good comprehension of curative care, palliative care and end-of-life care (context). In Chapter 5 (p.162), CMOC 1 highlighted the importance of having consensual definitions within a GP practice in order to provide high quality palliative care and this was reflected in the refined programme theory for the chapter. This consensual definition is an essential context, as it allows palliative care patients to be identified early in their illness and have the input required for a good death. Furthermore, this context allows for the use of shared decision making in open communication strategies between health care professionals, patients and their family members, which results in planning for end-of-life and appropriate documentation (resources).

This was exemplified in Chapters 7 and 8 (p.231 and p.262, respectively). Chapter 7 highlighted how health care professionals’ attempts to engage patients in shared decision making can be blocked by the patient or their family members. In this circumstance no planning for a preference based death can occur. In Chapter 8 the refined programme theory highlighted the importance of shared decision making as an open communication strategy involving more than two experts - the patient’s family or carers should also be included to make it multi-component shared decision making. Furthermore, Chapter 4 (p.117) highlighted that communication between health care professionals could also be considered as shared decision making. These resources allow for enhanced operationalisation of proactivity and patient centeredness (reasoning). In the context described above with the overall mechanisms described, a preference based death is more likely to occur. Thus, the initial programme theories have been refined throughout the study and in combination have contributed to this final overall programme theory (figure 40).

Pragmatically, the overall programme theory was developed by undertaking a review of all the CMOC diagrams throughout the thesis and the final five refined programme theories from the end of each chapter. Commonalities and differences were searched for in order to find the overall ICP programme theory, which focusses on the implementation of national policy into the locality. The operationalisation of shared decision making, proactivity and patient centred care has been identified as difficult in the literature (see Chapter 1, pg.6). The overall programme theory for the ICP can be seen as a translational tool to convert national policy into local practice. The role of proactive care, patient centred care and shared decision making in the overall programme theory of the ICP are discussed further below.

Shared Decision Making As with most practice development efforts, interpersonal relationships between health care professionals and patients embody the intervention and have the ability to bring about change (Entwistle and Cribb 2013). Accordingly, shared decision making has been referred to as the crux of patient centred care (Institute of Medicine 2001, Godolphin 2009, Ferrer and Gill 2013) and appears throughout the findings of this thesis. Policies to promote shared decision making are prominent in the United States, Canada and the UK (Elwyn, Laitner et al. 2010), thus the characteristics of shared decision making have been well documented (Charles, Gafni et al. 1997, Godolphin 2009). It is known that most patients and their relatives prefer shared decision making over strict autonomy or health care professional directed decision making (Shields, Morrow et al. 2004, Murray, Pollack et al. 2007, Coulter 2010). Furthermore, the literature has indicated that involving patients in care decisions makes a potentially significant and lasting difference to health care outcomes (Stewart 1995, Elwyn, Edwards et al. 2000), as supported by this thesis (Chapter 8, p.262). However, the literature also highlights that quality shared decision making only occurs about 10% of the time (Braddock, Edwards et al. 1999, Godolphin 2009) and that it is often poorly implemented (Campion, Foulkes et al.

2002, Elwyn, Edwards et al. 2003, Towle, Godolphin et al. 2006, Young, Bell et al.

2008). This may be because shared decision making has been conceptualised and driven through a top down approach from national policy or (previously) a PCT.

The shared decision making mechanism in the overall ICP programme theory is different; it is a local initiative implemented and driven by local health care professionals who appreciate the locality and its unique features, thus it is more likely to be used due to local ownership. Shared decision making can face difficulties in practice due to personal characteristics; Chapter 7 (p.231) highlighted that it is not only health care professionals who can form a barrier to shared decision making but patients also. Patients must be able to articulate their health problems and feelings and communicate with the health care professional in order to understand and share relevant information (Towle and Godolphin 1999). The consultation recordings evidenced that this is not always easy for patients, even when given the opportunity to engage in a preference or end-of-life conversation.

Research has previously identified that successful communication is often frustrated by deficiencies in the patient’s ability to comprehend information presented to them due to anxiety (Ley, Bradshaw et al. 1973) or denial (Gattellari, Butow et al. 1999).

These are two psychological dispositions that can feature heavily in palliative care and featured in the thesis findings. Engaging patients in shared decision making in this context is very difficult. It is important to understand and explore the underlying associates of denial and information avoidance in palliative care as a shared decision making model in which one party pre-dominates (in this case the health care professional as the patient does not wish to engage) may result in a suboptimal decision. This is because neither partner (the health care professional or the patient) has the essential and adequate expertise required for making a shared decision (Gattellari, Butowa et al. 2001).

However, it may be that the GP and the patient together still do not have adequate expertise for making a decision. A systematic review of the effects of shared decision making on patient satisfaction, treatment adherence and health status by Joosten, DeFuentes-Merillas et al. (2008) states that “the involvement of family members in shared decision-making may be important” (p.220). Godolphin (2009) suggest that shared decision making may also involve a team of health care professionals working collaboratively or significant others including family members and carers. Despite this, the literature still has a strong focus on shared decision making between only two experts – the patient and the health care professional (Charles, Gafni et al. 1997, Charles, Gafni et al. 1999, Murray, Charles et al. 2006). Evidence in the literature argues that health care professionals in primary care see an individual in the context of their family and wider social network and are thus aware of the impact of ill health on one individual on the rest of the patient’s social network (Cartwright and Anderson 1979, Murray, Charles et al. 2006), yet there are still no strong claims for family members (or significant others providing care) to be involved in shared decision making about treatment decisions. Arguably, this might have particular significance in palliative and end-oflife care. The findings from this study indicate that the involvement of the family and other significant individuals, such as care home staff, in shared decision making in palliative care can be crucial (Chapter 8, pg.262). A multi component communication strategy that involves not only the health care professional and patient but also those in close proximity is indeed essential in achieving patient focused palliative care aims, such as a home death. This shared decision making also needs to be placed in a context where the decisions reached are documented and communicated more broadly to those who are not so proximate but also require this valuable information - the OOH service, secondary and social care teams, for example. A partnership between the health care professional and patient only can result in family members or carers not being informed or consulted about plans or decisions. This can be detrimental as it is often family members or paid carers who provide the majority of care and thus may have a significant input into whether the plan is feasible. This study indicates that multidimensional shared decision making may be more effective as a mechanism in palliative and end-of-life care than the traditional model. Patients do not live in isolation and thus the family members and carers they live with are also experts who need to be involved in the shared decision making process. The need for paid carers’ involvement in shared decision making was further exemplified in that care home deaths increased when paid carers implemented the end-of-life care plan (Chapter 8, pg. 262), which involves patients making decisions about preferences for end-of-life, similar to the locality advance care plan. Although a health care professional was not present when the end-of-life care plan was completed, it meant that an open communication strategy was created between the care home resident (patient), their family members (if present) and the carer. Furthermore, the patient may have then had their preferences discussed with a health care professional, thus reinforcing the decisions that they have previously made using the end-of-life care plan. Therefore it can be taken that shared decision making may benefit from being as multipartite as possible in order to constitute a successful mechanism in palliative care that triggers enhanced patient centeredness and proactivity.

Policy makers perceive shared decision making as necessary due to its potential to sustain the health care system (Coulter 2006) and promote the right of patients to be involved in decisions concerning their health (Straub, Nebling et al. 2008, Légaré, Ratté et al. 2010). However, this thesis highlights that understanding the conversations that take place between health care professionals as shared decision making can play a crucial role in care planning. Chapter 4 (Embeddedness of the ICP as a new initiative, p.117) highlighted the importance of having the nursing team on site at the GP practice as it promotes informal contact, enhances professional relationships and facilitates MDT meetings. This communication between professionals is a crucial part of the shared decision making mechanism in the overall programme theory, as it allows for shared decision making to occur between health care professionals in relation to patients. Enhanced professional relationships mean that health care professionals work more comfortably with one another. This is enhanced by informal contact (short conversations in between surgeries) and more formal, frequent MDT meetings. Chapter 5 (p.163) highlighted that shared decision making between health care professionals is facilitated by use of the palliative care register as a framework, providing a structured way to discuss palliative care in MDT meetings, facilitating proactivity and patient centeredness (reasoning). This also contributed towards three of the practices being identified as ‘high performers’ in Chapter 4 (p117). Shared decision making between health care professionals has also been a facilitator in generating a shared understanding of the definition of ‘palliative care’, ‘end-of-life care’ and ‘curative care’, which forms the overall programme theory context. Once health care professionals in the locality were sensitised to the appropriate definitions through the creation of a consensus (context), they could then use their strengths in practice to improve palliative care registrations. This is extremely important as palliative care registrations can be the first step in using a palliative care framework with a patient. Thus, if a consensual definition is not present, palliative care registrations will not take place and the ICP is not implemented, hence making consensual definitions the essential overarching context for the overall programme theory of the ICP.

This thesis thus highlights a new understanding of shared decision making, that between health care professionals. A lot of the same principles apply - the meeting of experts; developing a partnership; determining and acting in response to the other person’s ideas; identifying relevant choices and evaluating research evidence for the most appropriate course of action; making or negotiating a decision in partnership;

and resolving conflict, agreeing an action plan and completing arrangements for follow up (Godolphin 2009).

Although the ICP had some implementation tools (CQI PCQV, Palliative Care Partnership) more could have been provided to ensure it was implemented fully into all GP practices. Practices in which the overall programme theory carried more explanatory potential were those that had strong leaders and peer support (champion or opinion leads) and were therefore influenced to see the relative advantage of the ICP. Thus it is reasonable to assert that shared decision making between health care professionals in these practices may have been more likely. Thus, the programme theory mechanism was more likely to fire. Strong communication within practices was through a cascade of information, dissemination of this information and knowledge transfer. A diagram outlining the types of implementation possible is provided from Greenhalgh, Robert et al. (2004). Their ‘Conceptual and Theoretical bases for the spread of innovation in service organisations’ figure can be used to help understand the findings related to implementation in this thesis.

Figure 41: Greenhalgh, Robert et al., (2004) - Conceptual and Theoretical bases for the spread of innovation in service organisations, reproduced with permission from Wiley (Appendix 36).

The Greenhalgh, Robert et al. (2004) diagram (Figure 41) explains how innovations may be implemented more readily when a technical or managerial factor is present.

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