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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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Normalisation Process Theory The Normalisation Process Theory (NPT) (May and Finch 2009) is a sociological theory that has been extensively promoted as a way to understand implementation, embedding and integration of innovations, especially in health care settings (McEvoy, Ballini et al. 2014). Thus it has been advocated as a means of bridging the translational gap between policy and practice (Murray, Treweek et al. 2010, Morrison and Mair 2012, McEvoy, Ballini et al. 2014). The NPT emphasises the fluid, vigorous and interactive processes between context, actors and objects and is consequent of studies aiming to understand implementation of complex interventions in health care settings (McEvoy, Ballini et al. 2014). The NPT has four main theoretical constructs – coherence, cognitive participation, collective action, and reflexive monitoring.

Coherence refers to the development understanding that individuals and organisations must work to achieve in order to promote or inhibit the routine embedding of a practice (Finch, Mair et al. 2012). Cognitive participation refers to the work that individuals and organisations have to do for individuals to register and engage with the new practice (Finch, Mair et al. 2012). Collective action is the work that individuals and organisations have to do to enact the new practice (Finch, Mair et al. 2012). Finally, reflexive monitoring is the appraisal of a new practice once it is in use, to assess its advantages and disadvantages.

NPT is not concerned with the relationships between individual attitudes and intentions and behavioural outcomes and thus does not focus on how knowledge is created within or across professional groups (McEvoy, Ballini et al. 2014). However, similar to the Diffusion of Innovation (Rogers 1995), the NPT focuses on the legitimacy of the intervention and the role of opinion leads. Thus it explores understanding, trust and interpersonal relationships within social networks as they impact on the implementation of an intervention (Doumit, Wright et al. 2011, Harris, Provan et al. 2012).

Summary of aids to translate policy into practice CQI, diffusion of innovation and NPT are all concepts that can explain, and in some cases, aid the diffusion of policy into practice. They offer explanatory potential as to why some interventions are not adopted by practice or why they are only adopted by some organisations and not others.

Chapter Summary Palliative care has been termed since the 1970s and is gaining increasing significance in health care. However, there are still prominent barriers to the implementation of palliative care in practice related to disease type (cancer or non-cancer), health care professional ethos and the constraints of systems created to ‘cure’ people. This is understandable given the complexities of palliative and end-of-life care (Vissers, van den Brand et al. 2013). It is currently not explicitly known how these barriers affect the care that is provided in practice. However, in order to provide preference based palliative care, these barriers must be overcome. The literature indicates that most patients would prefer to die at home. However, a home death requires discussions and planning, which are often stunted by the societal taboo of death and dying. Efforts have and are still being made in breaking down this taboo by the public, through the media and policies related to palliative and end-of-life care. National guidance strongly advocates the use of proactive care, patient centred care and shared decision making to provide high quality, preference based palliative and end-of-life care. Although these philosophies are of good standing and can result in positive outcomes for patients, they can be difficult to implement in primary care. There are some theories and tools that can be used to understand and, in some cases, improve, the implementation of interventions into practice including CQI, diffusion of innovation and NPT.

The next chapter describes how ICPs can structure palliative and end-of-life care and aim to provide proactive, patient centred care using shared decision making. The chapter will describe an ICP and explore one of the most well-known ICPs related to end-of-life care. ICPs in palliative care will be described and the ICP under study in this thesis will be explored in detail.

Chapter 2: Integrated Care Pathways A detailed explanation of ICPs will be provided including how they are defined and described in the literature. Following this, the ICP implemented in the locality will be described in full, including the locality and GP practices’ characteristics, the commissioning process and all the tools that can be used within the pathway. Published research will then be used to highlight what is known about ICPs in palliative care and identify a clear gap in the literature regarding underlying generative mechanisms.

What is an integrated care pathway?

To meet patients' needs as stated in national policy, a whole-systems approach is required which co-ordinates care across professional and organisational boundaries (Addicott and Ross 2010). ICPs offer a system of multidisciplinary care planning based around the principle of clinical audit and on the understanding and practice of clinical staff, which facilitate the management of defined patient groups with a specific clinical problem (Hotchkiss 1997, Campbell, Hotchkiss et al. 1998, Atwal and Caldwell 2002).

They have been formulated as a strategy, thus provide a potential link between the publication of national guidelines and their implementation in local clinical practice (Campbell, Hotchkiss et al. 1998). Therefore an ICP can reasonably be expected to constitute an effective tool for the translation of proactive care, patient centred care and shared decision making into practice.

ICPs aim to: reach or exceed existing quality standards; improve multidisciplinary communication, health care professional-patient communication and patient satisfaction; reduce unwanted practice variation; and enable new staff to learn key interventions for specific conditions quickly (Campbell, Hotchkiss et al. 1998).

Furthermore, they are a strategy for improving the collection and analysis of clinical data from practice in order to promote change (De Luc 2001). ICPs are primarily considered to be tools for designing care procedures, implementing clinical governance, unifying delivered care, improving the quality of clinical care, and ensuring that clinical care is based on current evidence (Riley 1998, De Luc 2001). They can consist of one document acting as a care plan, detailing the essential steps in the care of patients with a specific clinical problem, and offering description of expected progress (Campbell, Hotchkiss et al. 1998, Chan and Webster 2010). However, a palliative care ICP of this format would be very difficult to formulate for all palliative care patients due to the great variety of conditions and needs. Yet all palliative care patients have underlying similarities in needs that require attention from health care professionals; most prominently the need to plan for a good death which can be achieved through the use of proactive care that is patient centred through use of shared decision making. Thus the ICP studied here uses an advance care plan as one of a number of potential resources (as described in full later in this chapter). Although it is not validated, Croucher’s work (2005) provides a helpful set of criteria to frame the service provided in this study. To

be considered an ICP a service must be:

A plan of expected clinical care – this is in all the documentation and • information in the service being evaluated

• On some form of timeline, whether that is days, hours or stages.

• A multidisciplinary document.

• The actual clinical record.

• Based on evidence-based guidelines.

• A system to review performance.

• Able to cross organizational boundaries.

• An evolutionary and dynamic tool that is therefore never cast in stone (Croucher 2005).

Thus the palliative care ICP in this study is a long term integrated service that includes aspects of the traditional ICP but has been edited to work with the palliative care patient population. Due to meeting most of the criteria described by Croucher (2005) and the term ICP encompassing the general approach of the service this study evaluates, the service will be referred to as an ICP throughout the thesis.

ICPs provide benefits which lead to patient centred care, increased patient satisfaction, a reduction in documentation and inappropriate lengths of stay in secondary care (Kitchiner and Bundred 1996, Hotchkiss 1997). Use of ICPs can reduce errors and ineffective clinical practice, therefore improving outcomes (Kitchiner and Bundred 1996). However, there are concerns about ICPs and barriers to their implementation.

These include discouragement of clinical judgement of individual cases, restriction of innovation, and the requirement of guidance, energy, high quality communication and time for successful implementation (Campbell, Hotchkiss et al. 1998). Other barriers to implementation include reluctance to change, lack of suitable evidence based guidelines, inadequate resources to develop guidelines locally, disruptive interpersonal politics, lack of recognition of the need for improvements in the quality of care, difficulty in identifying cost savings, insufficiently informed leader or a leader who is not of high enough standing within the organisation (Campbell, Hotchkiss et al. 1998).

ICPs for palliative and end-of-life care management are used widely around the world and have been regarded as the gold standard (Chan and Webster 2010). They have also been set as the main part of the End of Life Care Strategy in the UK (Department of Health 2008) and are part of the NHS’s GSF (Thomas 2003). ICPs provide a key tool in translating policy into practice but practitioners nevertheless have been reported to face some implementation barriers (Campbell, Hotchkiss et al. 1998).

The Liverpool Care Pathway for the Dying Patient Historically dying patients received insufficient attention from senior medical staff and nursing staff, and experienced inadequate symptom control (Mills, Davies et al. 1994).

This prompted the development of the LCP, the most well-known ICP in palliative and end-of-life care in the UK for the dying phase of palliation (Chan and Webster 2010).

The LCP was developed by the Royal Liverpool University Trust and the Marie Curie Centre Liverpool to transfer the high standard of hospice care to secondary care (Ellershaw, Foster et al. 1997, Ellershaw and Ward 2003). It is a standardised approach to care for dying people which is intended to ensure that consistently good care is given to everyone considered to be dying within a maximum of three days, regardless of location (hospital, nursing homes, own home) (Ellershaw and Murphy 2005, Neuberger, Aaronovitch et al. 2013). The LCP monitors not only the physical care of a dying patient, but also addresses their psychosocial and spiritual needs such as the religious and spiritual aspects of care (Ellershaw, Gambles et al. 2007, Veerbeek, van Zuylen et al. 2008) Other objectives of the LCP are to encourage cost-effective health care through appropriate prescribing, and avoiding crisis interventions and inappropriate hospital admissions (Chan and Webster 2010). The document was developed from surveys, focus groups, expert opinion and consensus on best practice, with an aim of being patient centred and addressing holistic care needs. The LCP defines nineteen goals considered essential in the management of dying patients and for the care of their relatives and carers after death (Ellershaw, Foster et al. 1997, Ellershaw and Ward 2003). After the development of the LCP numerous other groups developed ICPs for the dying based on similar principles (Pooler, McCrory et al. 2003, Fowell, Russell et al. 2004, Bookbinder, Blank et al. 2005). Due to substantial criticism including claims of premature diagnosis of imminent death, the LCP masking signs of improvement in patients, and dissatisfaction from carers and family members (Delvin 2009, Smith 2009), the LCP was subject to an independent review in 2013 (Neuberger, Aaronovitch et al. 2013). This report concluded that there was poor understanding among health care professionals of existing guidance in care for the dying and a need for improved skills and competencies was identified. Furthermore, there was a reluctance to discuss the prospect of death and its clinical uncertainties with patients, their relatives and carers (Neuberger, Aaronovitch et al. 2013) due to a lack of openness and candour among clinical staff. A lack of compassion was also highlighted, and a need to put the patient, their relatives and carers first, treating them with dignity and respect was elected as pivotal for future care of the dying. This echoes the principles explored in the previous chapter (Chapter 1, p.6) regarding the difficulties of translating policy and evidence in to practice due to difficulties surrounding communication in palliative and end-of-life care.

The difficulties described resulted in the decision to ‘phase out’ the LCP across the NHS, with a replacement service for end-of-life care currently being developed. The national and regional guidance for the care of patients in the last three days of life is that the ‘proper’ use of the LCP (or its equivalent) should continue until new care planning tools are introduced (Appendix 1). Thus, the locality health care professionals now explain the pros and cons of the LCP to patients and their family members and they make a decision as to whether they would like to have the LCP or not. If the patient or their family members (making a decision through best interests) chooses not to have the LCP, health care professionals ensure that the patient still receives the same standard of care (that identified within the LCP) and discuss all relevant care decisions with relatives. This illustrates the highly sensitive national debates which form the backdrop to this study.

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