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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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Data from the 2011 and 2012 Death Audit allowed more refined questions to be answered by the data sets; allowing the number of people who died of cancer and non-cancer that were on the palliative care register to be identified. Two ratios were made for each year (2011 and 2012) and for each GP practice using their cancer deaths on the palliative care register divided by the total cancer deaths that year and the non-cancer deaths on the palliative care register divided by all non-cancer deaths that year. The mean and standard deviations for these ratios are presented in Table

8. The cancer ratios for 2011 and 2012 were then compared, and the non-cancer ratios were then compared with each other. Ratios were created in order to account for differences in practice population sizes.

A paired samples t-test was conducted to compare the ratios of cancer deaths on the palliative care register between 2011 and 2012. There was no significant effect of time on cancer death palliative care registrations (t(13)= -1.06, p.05, two tailed).

The means and standard deviations of the palliative care registered cancer deaths to all cancer deaths ratio are displayed in Table 8 and indicate an increase from 2011 to 2012.

Table 8: Ratio of registered cancer deaths to total cancer deaths in 2011 and

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A paired samples t-test was conducted to allow a comparison of the ratios of noncancer deaths on the palliative care register between 2011 and 2012. There was a significant effect of time on non-cancer death palliative care registrations (t(13) = p.05, two tailed). The means and standard deviations are presented in Table 9 and show an increase from 2011 to 2012, meaning that GP practices are significantly increasing the number of non-cancer palliative care registrations they make. Increases appear small due to the data being in ratio form, where 1 would mean that all patients who died of cancer were on the palliative care register. The eta2 statistic (0.34) indicated a small effect size, according to Cohen (1988).

Table 9: The ratio of non-cancer deaths to total non-cancer deaths in 2011 and 2012.

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These two statistical tests indicate very important outcomes; between 2011 and 2012 practices did not significantly increase the number of cancer patients they registered but did increase the number of non-cancer patients they registered. The lack of increase in the number of cancer patients registered who died could be attributed to most practices being quite competent in registering them.

However, it is not possible to know whether non-cancer registrations have been increasing since ICP implementation (2008) or whether they have just started to increase from 2011 to 2012. This is due to data restrictions explained earlier; the tools that collect data only asked more refined questions about disease type from 2011.

Mechanism: Legitimation through education Discussions in FG3 highlighted that health care professionals now had more informal education about non-cancer diagnoses and their relevance and need for appropriate palliative care. This was following the publication of national policy such as the End of Life Care Strategy (Department of Health 2008), educational events, PCQV and informal learning from the ICPs founder.

GP4 (FG3): “I think it’s more that we’ve been legitimised to put palliative care patients on the register, you know, through educational events and people like (founder), the End-of-Life Care Strategy and things such as that.” GP3 (FG3): “I think its education, really. We’ve been educated that we can now think that non-cancer patients require palliative care. And the permission, it’s the permission that you can consider non-cancer patients as palliative.” Health care professionals felt that these forms of education (resource) had legitimised their decision to put palliative care patients on the register (reasoning) which increased their self-efficacy to provide high quality palliative care to all.

Health care professionals also felt that as their experience built in providing palliative care for cancer patients, so did their self-efficacy in providing palliative care for non-cancer patients.

GP6 (FG3): “Experience wise, you start feeling, maybe there’s a confidence thing there as well. We’re starting to build more confidence in cancer deaths and as a result of that we’re thinking this is quality (care), and actually why shouldn’t that person there have the same bit of me or the same pathway. I mean that is a significant challenge due to prognostics, that’s really difficult isn’t it. So maybe our reasoning is, why not? Why not this group of people, if cancer patients get it, but also as a confidence thing as well maybe. I feel happy I could manage these kind of dying patients so why can’t I manage all my dying patients rather than just a select few?” GP6 highlights how health care professionals in the locality have increased their self-efficacy to provide palliative care to non-cancer patients.

Context: Changes in cause of death and palliative care for all The literature highlighted that non-cancer illnesses such as dementia are expected to increase, from 800,000 in 2012 to 1,000,000 in 2021 (Alzheimer's Society 2013).

This evidence, alongside the knowledge that the population is aging (Caley and Sidhu 2011) and cancer treatment is advancing (Costanzo, Ryff et al. 2009), suggests that cancer deaths will continue to decrease and non-cancer deaths will increase in the future. The participants in FG3 commented upon the changes in cause of death in the UK.

GP5 (FG3): “Also, I think there’s less, less, some cancers that people aren’t dying from that much now. Breast cancer for example, we’re just better at treating it. They’re just not coming through the door quite so regularly.” GP4 (FG3): “I think the other thing as well is that people, not just cancer patients but patients with other terminal illnesses such as heart failure due to modern medicine are living longer than they ever did and this has kind of filtered down, as in days gone by hospices would only take cancer patients whereas now hospices will take people with end stage heart failure or end stage COPD and things and that’s because they’ve lived longer than they would have done historically.” The increasing numbers of non-cancer deaths mean that the identification of noncancer palliative care patients needs to be of the same standard as the identification of cancer patients (via palliative care registration) and non-cancer patients need to be considered as appropriate for palliative care. However, FG2 highlighted that some health care professionals still have uncertainties about palliative care and its applicability to all terminal illnesses.

Community Matron (FG2): “And I think that erm, maybe sometimes we do tend to, when you say palliative care, you do think of cancer diagnoses whereas your COPD and heart failures and things like that, and I think they’re quite difficult from our perspective to know when, you know if they have an exacerbation then yes they’re really struggling but the next week they could be fine so at what point do you think well, they might be ready for the pathway (ICP)?” This nurse refers to an important context when registering a non-cancer palliative care patient, the inequality between cancer and non-cancer diagnoses due to the association cancer has with palliative care. The nurse explicitly states that palliative care still has strong associations with cancer. However, health care professionals are increasingly viewing non-cancer patients as appropriate for palliative care. In FG2 most health care professionals selected palliative care for those with non-cancer diagnoses as an important context for palliative care registrations. This suggests that they are aware of the difficulties associated with non-cancer diagnoses and the need for and importance of palliative care for non-cancer patients. In FG3 a GP referred to the increasing recognition of non-cancer patients requiring palliative care.

GP4 (FG3): “That’s why more non-cancer patients are being registered. And because historically we wouldn’t have thought of it, palliative meant cancer patients. I think that’s the biggest factor.” Summary

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Figure 20: Recent increases in non-cancer registrations Health care professionals have an increased recognition that causes of death are changing and that palliative care should be inclusive of non-cancer patients (context). The education the ICP has provided (resource) through several mediums has legitimised registering non-cancer patients and the experience with cancer patients has built self-efficacy in registering non-cancer patients (reasoning) and providing them with the same high quality palliative care. The outcome of this is that more non-cancer registrations are increasing from 2011 to 2012, as displayed in Figure 20.

It is important to note the impact of CQI efforts in the ICP, in the form of PCQV.

They not only impacted on the embeddedness of the ICP (Chapter 4, CMOC3, p.133) but have also aided in increasing the registrations of a difficult population (non-cancer patients).

Chapter Summary Putting patients on to the register is an essential step when health care professionals assess a patient as requiring palliative care. It prompts the use of other ICP interventions and helps health care professionals to work within a palliative framework. Although all palliative care registrations are increasing (from 2008 to

2012) due to resources the ICP provides (the surprise question and MDT meetings – CMOC1) there are still significantly more people with cancer diagnoses registered than non-cancer diagnoses. This is because health care professionals feel the unpredictable prognosis of non-cancer illnesses makes registering patients a stressful process; they are unconfident with it (CMOC2). Providing palliative care in care homes to frail elderly people with non-cancer illnesses can also be particularly difficult (CMOC3). However, from 2011 to 2012 registrations of noncancer patients have increased. This is due to the increased recognition of change in cause of death and of non-cancer patients requiring palliative care (context) formal and informal education provided by the ICP and experience from providing high quality palliative care to cancer patients (resource) (CMOC4). These factors are slowly building confidence in health care professionals to place more non-cancer patients on the register. Throughout all of the CMOCs reasoning is related to confidence or self-efficacy (the perceived ability to carry out a task) which is related to confidence. Health care professionals need to have confidence to provide

palliative care for non-cancer patients. This can come from a variety of sources:

MDT meetings (peer support), ICP tools (the surprise question, the traffic light system), education (formal and informal), experience from providing palliative care to cancer patients.

Programme theory 2 stated that 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). The registration of all palliative care patients is increasing (outcome) due to the use of ICP tools such as the surprise question, the traffic light system and MDT meeting (resources) and a consensus of the definition of palliative care. However, data has shown that there are difficulties in providing palliative care for all patients who need it, due to the difficulties of prognostication with non-cancer illnesses (context), which causes stress in decisions about registering patients; this results in less people with non-cancer illnesses being registered (outcome). Elderly people who live in care homes with non-cancer illnesses (context) also posed a difficulty for health care professionals in terms of palliative care registrations. However, the health care professionals in the locality are increasing their use of palliative care registrations for non-cancer patients (outcome). They felt that this was because they were building confidence in registering non-cancer patients (reasoning) from education and experience of registering cancer patients (resources) and a legitimisation of non-cancer patients as appropriate for palliative care. Thus the programme theory (2) described is generally supported, as all palliative care registrations are increasing from 2008 to

2012. However, there are underlying facets to this general CMOC that are extremely important to equality of care.

Once patients have been identified as requiring palliative care and registered as such, health care professionals may wish to broach preference discussions and offer the use of the locality advance care plan to the patient. The next chapter focuses on these difficult conversations and their documentation.

Chapter 6: Preference discussions and

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One of the crucial roles health care professionals have throughout a patient’s palliative care is to try to assess preferences for end-of-life care, specifically regarding the type of care they would wish to receive and where they wished to be cared for (Department of Health 2008). These preferences are important for patient centred care and planning, but also in case a patient loses capacity and therefore is unable to express a preference in the future. Even though preference discussions are of high importance they need to be entered into mutually by health care professional and patient. Thus they require skill and sensitivity, and the health care professional may have to approach the subject several times before the patient is willing to engage; but providing the opportunity to engage as early as possible is crucial, to avoid loss of capacity issues. The outcomes of preference discussions should be documented, regularly reviewed and communicated to other relevant people involved in the patient’s care: family members, carers and other health care professionals (Department of Health 2008). This process is referred to as ACP.

Until April 2012, a locality advance care plan was in use to document patient preferences. This was then replaced with the introduction of Deciding Right (NHS North East 2012), which explained ACP as an umbrella term, with several potential formal outcomes: the advance statement, the DNACPR form, the ADRT, EHCP or PW-LPA including health (all of which were described fully in the introduction chapter).

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