«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
Rachel (bereaved relative): “You just felt by, it got dark and that was it. It was the weirdest feeling you could ever have, you were alone with this person that was gunna die and you didn’t know, quite know when, or what was gunna happen. And if he was gunna take bad what was gunna happen when he took bad, you know nobody explained that, what could happen, if he did take bad.” The literature identifies death and dying as a social taboo that is still prominent, despite its diminishing presence in comparison to the past (1980s). Interviewees discussed how death and dying was often hidden away from the public view, supporting the literatures’ claims. These societal factors create anxieties for those providing home care for relatives (context). These anxieties are heightened when access to palliative expertise is not available, in OOH times such as weekends or overnight. In order to facilitate home deaths, the ICP must provide patients with reassurance and confidence to provide palliative care at home.
Figure 33: CMOC1, caring for a loved one who is dying As displayed in Figure 33, CMOC1 identifies that the context of the social taboo of death and dying does make family members anxious about managing death at home.
However, the data suggests that easily accessible palliative and end-of-life expertise (resource) which eased anxiety (reasoning) may have contributed to the increased numbers of home deaths. Thus it is important when preparing for a home death that carers are assured of where they can find easily accessible palliative and end-of-life help and expertise in order to reduce inappropriate hospital admissions. Although carers’ needs have been identified in the literature (National Cancer Research Institute (NCRI) 2004), there is a lack of good evidence on how these should best be addressed (Grande, Stajduhar et al. 2009). CMOC1 identifies that providing a telephone number for easily accessible palliative advice could address carers’ needs and reduce hospital admissions.
CMOC2 – Open communication strategies to increase ‘home’ deaths Outcome: Increase in ‘home’ deaths Chapter 6 (Preference discussions and the locality advance care plan, p.199) identified that the patient’s own home or their care home can be considered as settings that are hospitable to open communication strategies (as opposed to hospital, where communication strategies can often break down). Therefore, it is important to include care homes in the outcome analysis. Thus, assessing how many ‘home’ deaths, where ‘home’ refers to care home and own home deaths, is essential in this section of outcome analysis. Furthermore, death in the usual place of residence has been highlighted as an important proxy marker for quality (National End of Life Care Intelligence Network 2013).
A one-way repeated measures ANOVA was conducted to compare numbers of ‘home’ (own home and care home) deaths from 2007 to 2012, using Death Audit data. Mauchly’s Test of Sphericity was not significant (p.05), meaning that sphericity was assumed and relevant values are reported. There was a significant effect of time on ‘home’ deaths (F(5, 60) = 3.64, p.05, p = 0.23). 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. The means and standard deviations for ‘home’ deaths from 2007 to 2012 are presented in Table 15 and show a distinct increase in ‘home’ deaths from 2011 to 2012, which is expected from the previous analyses. Figure 34 also indicates that increases in home deaths each year have not been consecutive.
Table 15: Descriptive statistics for ‘home’ deaths in the participating GP practices.
Figure 34: Mean number of ‘home’ deaths in the fourteen GP practices between 2007 and 2012, using Death Audit data.
Figure 34 shows a sharp decrease in the number of ‘home’ deaths from 2010 to 2011 and a sharp increase from 2011 to 2012. Hospital deaths have not significantly increased or decreased (F(2.63, 31.6) = 0.49, p.05, p = 0.2) between 2007 and 2012; Figure 35 highlights this steady trend. Thus hospice deaths (including the commissioned local palliative care unit and other local facilities) were investigated.
Overall, from 2007 to 2012 hospice deaths have decreased significantly (F(5, 60) = 2.57, p.05, p = 0.18). However, there was a nearly significant increase in hospice deaths from 2010 to 2011 (F(1, 13) = 3.78, p =.074, p = 0.26), and a significant decrease in hospice deaths from 2011 to 2012 (F(1, 13) = 5.02, p.05, p = 0.28). Thus the newly commissioned option available through the ICP (the palliative care unit) may be giving patients extended choice and affecting the numbers of people who died at ‘home’ in 2011 and 2012; as when ‘home’ deaths decrease from 2010 to 2011, hospice deaths increase, and as ‘home’ deaths increase in 2011 to 2012, hospice deaths significantly decrease. The nearly significant increase in hospice deaths from 2010 to 2011 and the significant decrease in hospice deaths from 2011 to 2012 are displayed in Figure 36.
Figure 35: Mean number of hospital deaths between 2007 and 2012, using Death Audit data.
Figure 36: Mean number of hospice deaths between 2007 and 2012, using Death Audit data.
Data from the QDDM indicated that all GPs and bereaved relatives were very pleased with the location of their patient’s or loved one’s death. All patients’ deaths were at home, suggesting that this had been their desired place to die and this had been planned and executed well. This may be due to the GP’s knowledge of the patients’ preferences.
To conclude, hospital deaths are not increasing or decreasing, but ‘home’ (own home and care home) deaths are increasing overall since ICP implementation.
Hospice deaths including the locality palliative care unit may account for significant changes in the years 2011 and 2012. Location of death (home) was considered as extremely good by both GPs and bereaved relatives in the QDDM.
Mechanism: Open communication strategies (preference discussions and ACP) ACP (including preference discussions, the advance statement, DNACPR, EHCP, LPA-HW) is based on shared decision making. All the component parts of ACP can be considered as open communication strategies (resources) and are part of the ICP.
They promote discussions about care with patients, such as what care they would like to receive and where they would like to be cared for. Discussions are open and comprehensive and can include the patient, their family and health care professionals. These discussions empower patients and their family members (reasoning) to have ownership of their palliative care plan. A ward staff nurse asked why people from nursing homes are admitted to hospital in FG2 and was answered by a GP.
GP1 (FG2): “One of the reasons I would suggest is that the advance care plan discussion hasn’t happened.” The above quote highlights how preference discussions and ACP (resources) are integral to avoiding emergency admissions and facilitating a home death. A Macmillan nurse described how the process of ACP can result in patients having a better understanding about their care and they therefore feel more empowered to direct it (reasoning). This prompts them to ask questions and review their decisions, engaging in effective shared decision making.
MacMillan nurse (FG1): “So if it’s (advance statement) in the house it gives them a chance to sit and read through it as well you know? Often people don’t like to look through things when someone’s, a professional’s there, but if they’ve got it to look at you can encourage them, and if they’ve got more questions they can understand more about what’s going on.” Supporting the MacMillan nurse, GP1 described how communication about appropriate actions was essential, to enable planning.
GP1 (FG2): “I suppose it’s really difficult to, to give one example, because all cases are so unique and so different and we’re coming to the story at all different places, it’s hard to really say isn’t it?...
But in essence you want discussions and action that’s appropriate and timely, that’s what we’re trying to achieve isn’t it? So communication and appropriate action to ensure a good death is what all of this is trying to achieve” Comprehensive communication strategies such as ACP were also seen as an anticipatory mechanism that reduces patient and family stress.
GP1 (FG2): “It’s what we expect to happen, this is what we, this is what we can do, if it’s like this, if it’s like that, and it takes the pressure off them, you’ve talked to the families, you’ve said remember when we talked about the plan, and remember when we said if, and they go, ah yeah, yeah.” Therefore, patients’ understanding of their illness, their preferences (reasoning) and their palliative care are enhanced through use of preference discussions and ACP (resources) which is likely to lead to less emergency admissions but clearly facilitates home deaths.
However, if an emergency admission occurs, this three way open, honest and comprehensive communication system between the GP, patient and carer breaks down. The primary care health staff are not significantly involved during the patient’s hospital stay, patients are usually in a position where they are not able to comment on the care they receive as they are so unwell, and families become emotional, scared and disempowered. Supporting this, Ned and Caroline (bereaved relatives) explained how their mother had gone into hospital after a brain haemorrhage and had remained there for some time having futile investigative tests, against their will.
Caroline (bereaved relative): “If you like that’s a bit like what they were doing with (Ned’s mother), to say well we know this lady’s had a brain haemorrhage, we want to know what’s happening, well we know there is something going on in her head that involves blood pressure and, so probably this but we need to prove, we need to prove what’s happening so we can do nothing.” Caroline and Ned were extremely upset by their mother’s extended hospital stay and futile tests but felt that they did not have the experience, knowledge or empowerment (reasoning) to challenge the medical staff at the hospital and request their mother’s discharge.
Caroline (bereaved relative): “(You have less experience) than the medics do, and so inevitably you are going to be slightly shocked, and not certain whether there is going to be the possibility of, erm, some form of effective treatment, and, it was, it was clear when she came out four days later that no one had done anything, apart from, apart from find out what was happening.” Caroline (bereaved relative): “Perhaps we weren’t strong enough (to take her out of hospital). But realistically we have less experience of how someone is in that situation… Ned (bereaved relative): It’s knowledge, it’s coming back to knowledge.” Hospitals are not a favourable context for challenging discussions to happen. They have a dominant curative culture (context). In such an emotionally charged situation and with inevitably less technical knowledge than the medical staff, families rarely feel confident enough to challenge a consultant’s decisions about treatment and request their loved one’s discharge or refuse curative intervention. Furthermore, families may not be given the chance to engage in decision making (as above with Ned and Caroline). Hospitals can be disempowering places which have a curative focus and less long term contact with patients. The structure means that symptoms are not reported by the patient or family, a very different approach to care compared to that of palliative care provided in the community, where there is increasing demand to be patient centred, and acknowledgement of the family and the patient’s expertise is paramount. Although patient centred care and shared decision making are aspired to in secondary care, they are more difficult to deliver. Supporting this, GP1 explained how she did not challenge the consultants when her own father was ill, thus questioning how families with no medical knowledge are supposed to be confident and empowered enough to challenge hospital procedures and the staff administering them.
GP1 (FG2): “Well once you’re in a technical setting it’s very difficult to keep your brain straight. My dad was on ITU for 6 weeks with an open abdomen, that’s crackers isn’t it? That’s crackers. But I lost the plot as well because you’re in such a technical setting that you lose the plot. I mean, I look back and I think, he was a corpse, for goodness sake what was anybody thinking, but you’re in a high tech setting where everybody’s doing things constantly for 6 weeks. You lose the plot, you really lose the plot. So I wish somebody would have given me some, some sort of common sense, but you do lose the plot yeah. I think families do that.” This GP was not given the opportunity to think about the situation in a rational way and was not consulted on her opinion about her father’s care, similar to Ned and Caroline. No options were presented for shared decision making to occur (resource) and therefore the open communication strategies mechanism did not ‘fire’. Thus hospital is an inhospitable context for this mechanism. Furthermore, the open communication strategies such as ACP are not recognised or used in hospitals, suggesting fragmentation between primary and secondary care which can cause issues.
Social care team lead (FG2): “I can’t help but think that there could be loads and loads of great work done before that person ends up in emergency care and then admitted, and they could have all of that bumf with them but unless someone at the receiving end takes the time to look and read and find out, all of that could have just been a waste of time. So it feels as if, we need more than just a document, there’s got to be a buy in to be discussing between professionals and I suppose who’s responsibility is that, is it the GP, is it the…?” Ward staff nurse (FG2): “If we had this (information, ACP) as the patients came through the door that would be really, really useful.” Additionally, if the patient does not die in hospital and is discharged, the ownership of the resources (ACP) can change. Patients and their family have been subjected to competing discourses about palliative care, and the predominant curative context has suggested that a high level of intervention is viable.