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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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Chapter Summary The ICP has embedded into GP practices to varying degrees. Peer support and CQI are essential to ICP embeddedness, with those who have a strong peer support using more ICP interventions and getting better outcomes for patients in terms of place of death. CQI has contributed to practices significantly increasing their palliative care registrations, preference discussions and LCP use across the locality. Thus the ICP works as it is increasing intervention use (apart from ACP and anticipatory medication which will be discussed elsewhere in the thesis) and it works particularly well for those practices that have strong peer support mechanisms and CQI sessions. Furthermore, the ICP itself is a mechanism which provides interventions; intervention use predicts some of the variance in place of death, thus showing that the ICP works as a palliative care pathway. Finally, interviews highlighted that uptake of commissioned services was variable. This was attributed to personal circumstances and needs yet does not necessarily reflect lack of service value.

Programme theory 1 stated that some GP practices will have better outcomes in terms of place of death than others (context) due to use of interventions (mechanism). This programme theory has been expanded and refined. Some GP practices (Practices D, E and I) do have better outcomes than others in terms of place of death, which is predicted by intervention use. However, there are also other essential mechanisms such as peer support and CQI.

The next chapter focuses on the first intervention in the ICP, palliative care registration. This intervention is crucial, as it allows health care professionals to identify appropriate patients and work within a palliative care framework and to administer further interventions from the ICP such as preference discussions, ACP and LCP.

Chapter 5: Identifying and registering

–  –  –

Palliative care registration is the first step in engaging with the ICP and allows access to further appropriate interventions; palliative care registrations can thus be considered as a measurable proxy for early identification and ICP use. In line with national policy (Department of Health 2008) one of the key aims of the ICP was to identify palliative care patients within 6 months of the end-of-life and place them on the practice palliative care register. This leads to the use of ICP interventions such as OOH notifications and ACP. It also allows health care professionals to use the traffic light system to identify when patients are declining and allows for more responsive, comprehensive and individualised care in the patient’s preferred setting, where possible. In turn, this early identification can lead to a good death (Department of Health 2008). A second aim of the ICP was to identify and register all palliative care patients, regardless of diagnosis, with a specific focus on increasing the registration of non-cancer patients. This was due to the acknowledgement within the locality that non-cancer palliative care patients were rarely identified early. This is also particularly important as population based studies using random samples of deaths and bereaved carer reports indicate that there are more symptom issues in the last year of life in those suffering from progressive non-cancer diseases than those suffering from cancer (Higginson 1997).

This is due to the more extended trajectory of decline in non-cancer illnesses (Murray, Boyd et al. 2005). This suggests that non-cancer patients will rely heavily on palliative care symptom control; the palliative care register identifies these patients and highlights them to health care professionals who can meet their needs.

This chapter will describe CMOCs focused on the registration of palliative care patients in order to address the research questions and programme theory below.

Initial questions asked of the data The programme theory and subsidiary questions that this chapter focuses on were first stated in the methodology chapter and are reiterated below.

 Programme theory 2: Palliative care registrations should increase (outcome) due to a focus on identifying patients early using the palliative care register (mechanism) in a health care domain that appreciates the palliative care needs of patients (context).

- Are palliative care registrations increasing in the locality and if so

–  –  –

- Are both cancer and non-cancer patients appropriately put onto the palliative care register?

CMOC1 focuses on palliative care registrations for all palliative care patients regardless of disease type and explains how this is affected by the consensus of a palliative care definition in the locality. CMOC2 investigates the differences between cancer and non-cancer deaths on the palliative care register and the stress associated with non-cancer registrations. Supporting CMOC2, CMOC3 elucidates the anxieties health care professionals have about over populating the palliative care register with elderly and frail care home residents who have non-cancer illnesses.

CMOC4 explains the recent increase in non-cancer registrations from 2011 to 2012.

CMOC1 – Palliative care registrations Outcome: Increase in all palliative care registrations from 2008 to 2012 As discussed in relation to the embeddedness of the ICP, palliative care registrations are significantly increasing over time; a one-way repeated measures ANOVA was conducted to compare numbers of palliative care registrations from 2008 to 2012, using Death Audit data. Mauchly’s Test of Sphericity was significant (p.05), meaning that sphericity was not assumed and Greenhouse-Geisser values are reported. There was a significant effect of time on palliative care registrations (F(2.74, 30.17) = 9.93, p.001,  p = 0.47), indicating a large effect (Cohen 1988).

The means showed an overall increase in palliative care registrations from 2008 to 2012, therefore it can be concluded that palliative care registrations have increased.

Mechanisms: The decision to register patients Presented below are two mechanisms which work at different levels – the individual level, which contributes to the second mechanism which is at the team level.

Individual level ‘Would you be surprised if this patient was to die in the next 6 months?’ (The National Gold Standards Framework Centre 2009) (resource) is used by health care professionals in the locality to assess suitability of a patient for the palliative care register. This resource increases individual health care professionals’ confidence to suggest palliative care patients for registration at the MDT meeting (reasoning).

GP2 (FG2): “I think it’s one of the things that the palliative care pathway helped us with, in creating our palliative care registers we had to question, we had to ask ourselves, would you be surprised if this person died within six months? And that most certainly helped me define who I had previously would not have defined as palliative care… so I think that the pathway has helped that definition but that’s a local phenomenon I think.” The surprise question is a resource that health care professionals can use in isolation to make decisions about individual patients. If a health care professional believes that the patient may die in the next 6 months then they should suggest them for registration at the next MDT meeting.

Team level The surprise questions prompts individuals to make a decision about whether to suggest a patient for palliative care registration at the MDT meeting. The support that these meetings provide for health care professionals was evident in FG2. The social care lead in FG2 described how she felt that MDT meetings provided support by providing safety.

Social care team lead (FG2): “I think it’s strength in numbers isn’t it, with support for each other as well as safety. It, it’s safer, it’s a safer way to practice all round if you’re making multidisciplinary decisions.” In FG3 support in the palliative care MDT meetings was also described as nonhierarchical; with nurses sometimes providing support for GPs. Palliative care MDT meetings (resource) provide non-hierarchical support for health care professionals which they value highly. Decisions about palliative care registrations take place in these supportive MDT meetings, thus enhancing the confidence of health care professionals in deciding that the patient is appropriate for palliative care registration and removal from unhelpful life prolonging treatment (reasoning).

GP1 (FG1): “And what I think is you grow in confidence as a GP with your team and if the whole teams saying the same thing you feel more empowered to take control and confidently disconnect them from unhelpful (life prolonging) hospital appointments” Community matron (FG1): “I think it (MDT meeting) gives you that permission to say, right where do we stop, you know? And it’s about quality of life, not length of life and it’s about having that conversation with the patient to say, you know what do you want out of this? You know, the chemotherapy isn’t going to make you better? You know? It, it’s going to make them feel rotten anyway, so what do they want out of it? …But I think it allows you to, like GP1 says, (MDT working and meetings) gives you that confidence to have those conversations.” Community matron 2 (FG1): “I think as a primary health care team member, when we meet and discuss our patients who are on that register, it makes, makes you talk about them a bit more than you would have done without it. You know you, it allows you to, erm, you know, once a week or once a fortnight, depending on how often you hold your meetings, it allows you to bring those patients and to, you know, and they’re not forgot about, and both the GPs and the nurses and everybody that’s involved with it can share their views and concerns in a structured way, so I think in that way its good.” The GP and community matron felt that MDT meetings gave them confidence to operate within a palliative care framework where appropriate (reasoning). Thus, health care professionals’ reasoning is being changed in response to the MDT meetings that the ICP provides (resource), to have increased confidence that a patient is appropriate for palliative care (reasoning) and registration.

To summarise the mechanisms, at the individual level the surprise question (resource) increases health care professionals’ confidence to suggest a palliative care patient for registration at the MDT meeting (reasoning). This mechanism triggers the next, which operates at the team level; MDT meetings (resource) then provide additional support and further enhanced confidence that a patient is appropriate for palliative care (reasoning). Health care professionals’ reasoning is being changed to be confident that the patient is appropriate for palliative care in response to resources that the ICP provides, both for the health care professional working in isolation (surprise question) and then as part of a MDT (MDT meeting).

Confidence can be related to self-efficacy, which is the perceived ability to perform a task (Bandura 1977). It has been shown to be an underlying mechanism in a wide range of behaviours (O'Leary 1985, Strecher, DeVellis et al. 1986, Yalow and Collins 1987, Bandura 1991) and can reasonably be linked to the increase in confidence seen in health care professionals in this CMOC.

The ICP offers many resources which can be used in different ways – for example in isolation (the surprise question) or collaboratively (the MDT). Thus it is sometimes impossible to disentangle the different elements of the ICP because they have a synergistic effect on one another. For example, in isolation, the surprise question or MDT meetings may not result in a sufficient increase in confidence to register a patient. Therefore either the surprise question or MDT meetings in isolation provide limited explanatory potential for the increase in all palliative care registrations.

Context: Consensual definitions In 2008, the End of Life Care Strategy (Department of Health 2008) was published which made palliative and end-of-life care a priority. The locality absorbed this information and made it applicable through the design and use of the palliative care registers. The publication of this policy and implementation of the ICP prompted the need for enhanced understanding of the definitions of palliative and end-of-life care. Individuals living with progressive and complex illnesses eventually experience the transition from treatment focused on stabilisation, even remission of their disease, to treatment focused on palliation (Thompson, McClement et al.

2006). FG2 highlighted that some health care professionals are still not confident in identifying when curative care should become palliative care, resulting in less palliative care registrations.

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