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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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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 restated below.

 Programme theory 3: There will be an increase in the use of preference discussions and use of the locality advance care plan (outcome), as health care professionals become more confident with broaching the subject of death and dying with patients (mechanism) and aware of the importance of having and documenting preference discussions, which has been highlighted by recent policy (context).

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patients increasing and if so why?

- Do preference discussions predict the use of advance care plans?

CMOC1 explains the increases in informal preference discussions between health care professionals and patients, prompted by changes in condition or need. CMOC2 identifies why these preference discussions may sometimes occur late in a patient’s illness, even when their illness trajectory is predictable. The time constraints in primary care are discussed in relation to the use of the locality advance care plan in CMOC4 and the change to the advance statement from the locality advance care plan is detailed in CMOC5.

CMOC1 – Markers for initiating preference discussions Outcome: Increase in preference discussions A one-way repeated measures ANOVA was conducted to compare numbers of preference discussions that occurred and were recorded on MIQUEST in 2009/10, 2010/11 and 2011/12. The means and standard deviations are presented in Table 10;

the means show an increase in preference discussions over time. Mauchly’s Test of Sphericity was not significant so sphericity was assumed. There was a significant effect for time on preference discussions (F(2, 22) = 15.95, p.001,  p =0.59).

Using the guidelines proposed by Cohen (1988) for the  p (0.01 = small, 0.06 = moderate, 0.14 = large effect), this result suggests a large effect size. Post hoc tests revealed a significant difference between 2009/10 and 2011/12 (p.001) and a significant difference between 2010/11 and 2011/12 (p.005) in preference discussions. There was no significant difference between 2009/10 and 2010/11 (p.05), although it was close to significance (p =.08). Therefore it can be concluded that the GP practices are significantly increasing their use of preference discussions since the introduction of the ICP, with these increases being significant from 2009/10 to 2011/12 and 2010/11 to 2011/12. It may have been that in the first year (2009/10 – 2010/11) the ICP had not become embedded enough yet to yield a significant increase. The increases over time in preference discussions are represented in Figure 21.

Table 10: Preference discussions over time, using MIQUEST data.

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The number of practices involved in the analysis (N) is twelve instead of fourteen as SPSS accounts for there being no data for two of the practices in 2009/10 as they joined the ICP at a later date. These missing values are not regarded as an issue as the reason they are missing is not related to the data or intervention.

Figure 21: Mean number of preference discussions between 2009/10 and 2011/12, using MIQUEST data.

In addition to the statistical outcomes, the QDDM identified that preference discussions that are taking place are holistic. Planning for a funeral can be a very important aspect of preference discussions, and all GPs and bereaved relatives who answered the question relating to funeral planning scored it very highly, suggesting that the GP did broach funeral plans within preference discussions with the patient and their family.

Mechanism: Health care professionals’ desire to be patient centred Through using the ICP framework, health care professionals know that they have a responsibility to document patients’ preferences (resource). Following from this they need to ensure that these preferences will be adhered to, to ensure a preference based, patient centred, death. The ICP framework (resource) has always promoted the use of preference discussions through educational events, PCP meetings, PCQV and its underlying principle of proactive care and early intervention. Preference discussions provide patients with the opportunity to discuss concerns that may not otherwise be addressed. These discussions help patients to express where they would wish to be cared for and die if their condition worsens. Although preference discussions can sometimes be difficult to broach, they help patients to plan holistically for a good death, assessing spiritual, emotional and physical needs, and they are therefore a necessity. The increase in preference discussions is a combination of factors: the ICP’s framework (resource) which is enhancing health care professionals patient centred practice (reasoning).

Social care team lead: “I think it’s about empathy as well, I think gosh if that was me, what would I want? You can, you know, if you’ve got lots of management and skills around that area you want that person to have the best because that’s what you would want. Erm, and I think that we can’t underestimate the value of planning and if you can plan that pathway for that person and so they have a you know smooth and… that’s being kind and empathetic and person centred isn’t it.” Health care professionals have increased their use of preference discussions due to the ICP framework (resource), which focuses on proactivity and patient centred care, thus resulting in health care professionals’ drive to be patient centred and proactive (reasoning). Supporting this, all participants who answered the QDDM question referring to the opportunity to discuss funeral plans scored this as a 9 or 10 meaning that they felt this experience was almost perfect. This suggests that preference discussions are holistic, proactive and patient centred, including conversations about the patient’s funeral and not just assessing physical aspects of palliative care.

Context: A change in condition or increased needs Some patients have very clear end-of-life care preferences but they often rely on health care professionals to initiate discussions about this (Hanson, Danis et al.

1997). However, few health care professionals agree on a clinical marker as to when preference discussions should be initiated (Quill 2000, Thoonsen, Groot et al.

2011). A national questionnaire answered by multiple health care professionals identified the lack of prognostic indicators and clinical triggers for initiating palliative care, which appeared to be the main missing link in applying palliative care in primary care (Shipman, Gysels et al. 2008). Thus, if a palliative care framework is adopted at a late stage then preference discussions can often occur late or in crises (Quill 2000). However, in FG3 health care professionals stated that a change in a patient’s condition often resulted in them broaching preference discussions. This included a deterioration of condition, a formal terminal diagnosis or inappropriate hospital admission.

GP4 (FG3): “A deterioration in their condition (would prompt preference discussions), no possibility of further treatment, so end of the line… It’s sometimes a hospital admission that you consider to be inappropriate as well. You think, they probably shouldn’t have gone in, can we prevent this happening again, should we have a chat with the patient” Consensus has evolved among health care professionals that meaningful end-of-life discussions often occur too late. Quill (2000) suggests that if a patient has recently had an admission to hospital then a preference discussion can be prompted, but that this is too late. This is especially the case if the patient has had repeated admissions to hospital for severe progressive illness. This may be why most preference discussions in the locality are occurring at the amber stage of the traffic light system, as opposed to the green stage (verified by health care professionals in the locality and the founder of the ICP). However, this is an improvement from preference discussions occurring only in the red stage (end-of-life care being implemented and use of the LCP).

Another GP went on to elaborate that not only deterioration in condition but also an increase in needs could prompt him to broach preference discussions with a patient.

This included increased use of service such as social care and district nurses.

GP6 (FG3): “I think also, when someone’s needs are, what can we, what can we provide for someone’s needs and (inaudible) from the community, so carers are going in, the DNs are going in, their nursing needs are escalating… they’d been in hospital several times and you think, hang on here, do we need to wrap this up and start to put a pathway in?” GP6 highlights how an increase in a patient’s needs can trigger a change to palliative care from a previously curative framework.


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Figure 22: CMOC1, markers for initiating preference discussions Deterioration of a condition, increase in need (due to deterioration), or inappropriate hospital admission(s) are hospitable contexts for the ICP framework (resource) to be used which results in an enhancement in health care professionals’ proactive and patient centred care (reasoning) through preference discussions (outcome). CMOC1 is displayed diagrammatically in Figure 22. This CMOC does not infer that health care professionals were previously not operating within a patient centred framework; it explains that the ICP’s framework enhanced their patient centeredness.

CMOC2 – False hope can prevent preference discussions Outcome: Preference discussions can occur late Interviews identified that preference discussions often occurred late, even with patients who had cancer and a predictable disease trajectory. All of the palliative care patients interviewed had engaged in preference discussions with their GP but this was at a very late stage, when they were very unwell and bed bound.

Richard (Doris’s son): “Dr. (name) did ask when you were really poorly.” Doris (palliative care patient): “Yeah, yes he did, yeah.” Richard (Doris’s son): “And, and you said home. Yeah” Janet (palliative care patient): “It was a particular, that doctor, because I remember her standing at my bedside looking directly at me and she didn’t exactly say you know, what would you like to end, happen at the end. But I think that the way she used her words, I think I realised what she was getting at.” Michael (palliative care patient): “Yes, Dr. (Name) asked (where he’d like to be cared for), erm, it’d be last week, last Tuesday. We had Dr. (name) and 2 student doctors here… And he did ask, and we said at home.” All of these patients were cancer patients, which suggest that the prognosis of their condition would have been quite clear. Despite this, these quotes suggest that GPs have initiated preference discussions when patients become very unwell and bed bound, as opposed to in advance of a significant deterioration in health due to their terminal illness.

None of the palliative care participants interviewed had a locality advance care plan (the predominant form at the time, before it was replaced with the advanced statement from Deciding Right (NHS North East 2012) or any other associated care planning forms (DNACPR form, EHCP) and only one of the bereaved relatives recalled their loved one having a formal document (Caroline). The others just had informal preference discussions with their GPs.

Richard (Doris’s son): “No it was just general conversation I wasn’t there at the time, he did come and mention it to me.” Doris (palliative are patient): “Yes he did, he came and had a word with you.” Barbara (Michael’s wife): “We’ve had it (preference discussion) yeah.” Interviewer: “But you just haven’t got it written down?” Barbara (Michael’s wife): “No, that’s right.” The quotes above indicate that these palliative care patients and their relatives had not been asked to engage in the formal ACP process, thus meaning that late preferences discussions (discussed above) were the only form of eliciting preferences for these patients. This was despite one of the patients, Janet, specifically stating to a health care professional that she did not want to be resuscitated, which should have prompted the use of a DNACPR form but did not.

Janet (palliative care patient): “I do remember people asking me, erm, I don’t know the way she put it, she didn’t put it to me directly you know, do you want to carry on, but you know I made it quite sure and quite certain, hoped I had, have, but you know I don’t want resuscitation, I don’t want anything, I just want to go.” Jill (Janet’s daughter): “You haven’t filled one (DNACPR) in. It’s just been, it’s, it’s been said but you haven’t put anything into writing or filled… no.” Janet (palliative care patient): “No I haven’t signed anything or… I don’t want, I don’t want to be resuscitated.” The QDDM (Curtis, Patrick et al. 2002) results support this outcome in that some GPs and bereaved relatives had markedly different perceptions on preference discussions. Three out of four of the matched GP and bereaved relatives had very different scores; GPs scored 8-10 indicating an ‘almost perfect experience’ of preference discussions and bereaved relatives scored zero to three, indicating a ‘terrible experience’. This could be due to preference discussions occurring late.

However, this questionnaire asks bereaved relatives to answer on behalf of their loved ones, thus it may be that preference discussions occurred when relatives were not present, or relatives could feel that their own needs in terms of end-of-life preference discussions were not met. Again, this could be because they were not involved in preference discussions or because their loved one did not wish to engage in them, potentially due to their false hope for recovery.

To conclude, preference discussions with palliative care patients can still occur very late in the palliative care process, often when a GP believes that the patient is nearing end-of-life. This is evident by the participants’ statements about when they were asked about their preferences; all of the patients were bed bound at the time.

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