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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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DNACPR forms had not been filled in despite one patient specifically telling a GP that she did not wish to be resuscitated. The qualitative data analysis supports the quantitative GP practice data; preference discussions are increasing; however the quantitative data alone did not highlight that preference discussions are still occurring very late in the illness trajectory.

Mechanism: Preference discussions can dash patients’ hopes for recovery GPs 4 and 5 stated that they felt patients often had false hope from secondary care treatment options.

GP4 (FG3): “I think sometimes with cancer patients there is an element of possibly being given false hope by the cancer specialists in terms of what treatment is available and continuing treatment till quite late in an illness. And I think it’s quite hard as a GP to come in and dash those hopes.” GP3 (FG3): “I think (GP4’s) point about conflicting advice is one of the difficulties, be it oncologists or surgeons or haematologists.

Then how can you have a conversation with somebody when somebody else is saying we’re going to add in drug y to drug x and Z that you’ve already got. It makes it a very difficult conversation to have.” GPs 4 and 5 stated in FG3 that they found it difficult to broach preference discussions when patients were being given false hope from secondary care and pursuing aggressive treatment. They felt that if they broached preference discussions (resource) it might affect patients’ hopes that had been raised in secondary care consultations (reasoning).

Context: False hope from secondary care Receiving realistic information about the different treatment options and the likelihood of successful treatment or adverse effects and symptoms is difficult for palliative care patients (Matsuyama, Reddy et al. 2006). The literature indicates that patients would have chemotherapy for much smaller improvements in outcome than would health care professionals (Matsuyama, Reddy et al. 2006). However, patient autonomy and choice should always be valued and thus patients’ options should always be presented in a balanced manner (Earle 2006). However, there is a subjective discrepancy in how aggressive palliative treatment is viewed by patients, bereaved relatives and health care professionals. Both bereaved relatives and health care professionals who have experienced aggressive treatment for palliative care patients would avoid it, giving more time to plan hospice and end-of-life care (Earle 2006). However, in focus groups, terminally ill cancer patients who by virtue of still being alive had not experienced the whole course of their illness were more inclined to consider aggressive palliative treatment (Earle 2006). This discrepancy suggests that there is a gap between the informed opinions of bereaved relatives and health care professionals, and the decisions of patients. Slevin, Stubbs et al. (1990) make this more explicit, stating that 53% of cancer patients are willing to contemplate aggressive chemotherapy if chances of a cure were increased by as little as 1%.

Furthermore, patients have stated that they would accept chemotherapy or radiotherapy despite being aware that it would have no clinical benefit and no gain in survival chances (Palda, Llewellyn et al. 1997, Jansen, Kievit et al. 2001). This could be due to explanations from those providing the treatment being unclear. A quote from de Haes and Koedoot (2003) suggests that oncologists prefer to give treatment as opposed to deny it, despite doubtful expectations about a positive result.

“Giving chemotherapy, rather than watchful waiting, is what I have been educated to do; that’s what I have to sell in my shop.” (de Haes and Koedoot 2003, p. 45).

Another explanation of preference discussions not being broached with those who are receiving aggressive palliative treatment is that primary care professionals do

not feel comfortable in communicating this information. This could be attributed to:

a lack of tools in conveying pros and cons; the subject being too emotionally distressing to discuss; patients being unable to comprehend the realistic outcomes;

an attempt to not be totally honest in order to preserve hope (Earle 2006).

Although aggressive treatment can sometimes be inappropriately offered to noncancer patients experiencing exacerbations, it is more often offered to those with cancer in the form of chemotherapy, especially those in the later stages where it could be considered to be inappropriate (Mayor 2008). Furthermore, when health care professionals were discussing false hope it was in reference to those patients who have cancer. The CMOC is therefore more relevant to cancer patients, as is the literature discussed surrounding the pursuit of aggressive treatment.


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Figure 23: CMOC2, false hope can prevent preference discussions As displayed in Figure 23, patients are often given false hope from secondary care and offered aggressive treatment when they are approaching end-of-life (context).

This makes it difficult for health care professionals to broach preference discussions (resource) due to a fear of affecting their hope about prognosis (reasoning). This has resulted in preference discussions sometimes occurring late in the locality. CMOC2 can be construed in a positive way. If patients remove themselves from aggressive treatment from secondary care or if it is not offered (change in context), then health care professionals might be able to be open about illness progression and broach preference discussions (resource) without the fear of destroying patients’ hope (reasoning). This would result in preference discussions being viable earlier in the patient’s palliative care journey.

CMOC3 – Time constraints in primary care Outcome: Preference discussions do not predict use of the locality advance care plan Preference discussions and the locality advance care plan are both part of the ACP process. It is assumed that if a locality advance care plan has been completed with a patient then they have engaged in the ACP process. This is more of a robust process than preference discussions alone. A Spearman’s rank correlation co-efficient was used to see whether there was a relationship between preference discussions and the locality advance care plan (documentation) as the data was not linear. The correlation showed that preference discussions and the locality advance care plan (documentation) have a significant positive relationship (r = 0.55, n = 14, p.05), the least squares regression line (line of best fit) in Figure 24 displays a large strength positive trend (Cohen 1988). This suggests that practices that do more preference discussions also use the locality advance care plan documentation more often.

Figure 24: A correlation between preference discussions and locality advance care plans.

The correlation prompted a multiple regression, a stronger statistical test that identifies not only a relationship, as a correlation does, but whether one factor predicts another. Thus it was used to assess the ability of preference discussions to predict the use of the locality advance care plan (document). Preliminary analyses were conducted to ensure no violation of the assumptions of normality, linearity, multicollinearity and homoscedasticity. The model was not significant (F(1,12) = 3.35, p.05) thus meaning that preference discussions do not predict the use of the locality advance care plan.

In summary, the statistical tests indicated that there was a significant strong positive correlation between preference discussions and the use of the locality advance care plan, using 2011 data; however preference discussions do not predict the use of the locality advance care plan.

Mechanism: Additional paper work generated from the locality advance care plan In FG1 the community matron stated that she felt the locality advance care plan was difficult to use.

Community Matron (FG1): “The prin, the principle of the document is great and very, very sound. But it really needs to be made more, erm, more user friendly.” If a document is difficult to use then it is likely to be time consuming, which in the time constrained environment of primary care (context) makes the document less likely to be completed. Three of the GPs in FG3 commented on how much paper work the advance care plan generates.

GP4 (FG3): “It comes down to communication skills and time.

That’s one of the biggest constraints, not having the time to do advance care planning. You know, the days are just getting more and more hectic so there’s less and less time to effectively do things like this.” GP6 (FG3): “I mean undoubtedly there a huge work load there, in paper work… So it’s an issue over, as a format it’s a good thing, but it has to be built on communication and that’s a timely thing.

And maybe that’s the issue. With care planning and with end-oflife advance care planning. Maybe that’s the issue… It’s resource, and the biggest resource we don’t have is time.” GP3 (FG3): “Certainly when I was in practice it was the time consuming paper work that was the problem”.

The GPs may have opted to not use the locality advance care plan due to the extensive amount of paper work it generated (reasoning), especially due to the time constraints in primary care (context). The social care team lead described how time constraints became stressful for health care professionals in primary care.

Social care team lead (FG3): “And that’s stressful, because you know what you should be doing but it’s, and how you should be doing it, but it’s just so difficult when you’re stretching yourself ever so thinly.” Context: Time constraints in primary care The literature in the introduction highlighted that health care professionals in the UK have time constraints with patients (Elwyn, Edwards et al. 1999). Both the social care team lead and a GP commented on how time pressured they felt in practice.

Social care team lead: “We need more hours in the day” GP6 (FG3): “An 8 day week would just about cover it (tasks to be completed)” The quotes above highlight that health care professionals using the ICP feel pressured to complete all the necessary tasks they have to do in the short time they are given.


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Figure 25: CMOC3, time constraints in primary care The decision not to use the locality advance care plan (resource) may be due to the time consuming paper work it generates (reasoning), which is not feasible in a time constrained primary care setting (context), as shown in Figure 25. This has resulted in preference discussions not predicting the use of the locality advance care plan.

However, engaging in preference discussions can make the use of a locality advance care plan more likely, as demonstrated by the correlation showing a positive relationship between the two tools.

CMOC4 – The Mental Capacity Act and the locality advance care plan Outcome: No significant increase in locality advance care plans from 2009 to A one-way repeated measures ANOVA was conducted to compare numbers of advance care plans completed in 2009/10, 2010/11 and 2011/12. There was no significant effect for time on locality advance care plans completed (F(2, 22) = 0.21, p.05,  p = 0.2). This means that the number of locality advance care plans being carried out since the introduction of the ICP has not significantly increased. Figure 26 depicts this.

Figure 26: The mean number of patients who had locality advance care plans from 2009 to 2012, using Death Audit data.

Mechanism: The mental capacity act and instability of capacity The impairment that causes a lack of capacity can be temporary or permanent. A person must be assumed to have capacity unless it is established that they do not have capacity to make a certain decision about a certain matter (NHS North East 2012). This means that a lack of capacity does not apply to all decisions but only the one in question at that current time. Thus, capacity is unstable, as it relates to the decision that is being made and the functionality of the person at the time of the decision. This instability of capacity (resource) was commented upon in FG3.

GP4 (FG3): “It’s (capacity) is individual and it’s time specific.” GP3 elaborated on GP4’s comments, stating that capacity is very difficult to decipher and with is comes a fear of litigation from families (reasoning), suggesting that health care professionals have low confidence in their capability to efficiently assess capacity.

GP3 (FG3): “It’s the variability of capacity, erm, and in certain ways that can point to litigation. You see somebody you thought on this day seemed to understand and have capacity but then in three days time they may not even remember that they had the conversation and then if you’re certain you’ve got their preferences for do not resuscitate etc. and then the family say well they clearly couldn’t make that decision… Society believes that you never die. And that if you do then it’s someone’s fault.” GP3 also felt that the lengthy locality advance care plan made completing it with someone who’s capacity was questionable even more difficult.

GP3 (FG1): “I would welcome it (a shorter advance care plan). I am put off by the amount of detail present (in the locality advance care plan). The locality advance care planning document makes a difficulty of assessing mental capacity. For example, does this person have mental capacity for all of this document or just bits of it? I think a shorter document would be more defined.” Health care professionals have a fear of repercussions (reasoning) from assessing patients’ capacity which can be unstable (resource). This results in less use of the locality advance care plan.

Context: The locality advance care plan is to be used with those who have capacity to engage Most patients on the palliative care register have cancer diagnoses. However, some have non-cancer diagnoses which can result in cognitive impairment. A large proportion of patients with non-cancer diagnoses in the locality are in care homes and some do not have capacity to make decisions about their health care. However, in an increasingly patient-centred health service, individuals wish to make independent judgements about their care (Kon 2012), which can cause issues. The MCA (Justice 2007) provides a legal and clinical framework that health care professionals should adhere to when assisting patients in making treatment decision.

GP3 highlighted the MCA as an important context (using SSM) in FG2.

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