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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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GP1 (FG2): “The thing about the high interventions is that it makes it really difficult for the GPs because the, we, we don’t want them to be admitted but they get admitted, somehow, lots and lots and lots is done and they get sent home, so when they deteriorate again, it changes the, the families view of your ACP, because they suddenly want to like ditch it and say they want more of that, high input, intense, you know, it makes it very difficult to sell, sell your stall, because, (inaudible) in a whole host of people that admission shouldn’t have happened and yes we’ve prolonged life but so what, we’re going for quality here … it can skew the families ownership of the ACP because now they think that admission is a good thing because they can do things and they did live.” The related outcomes of prolonging life may not be appreciated as much in secondary care due the short term basis of interactions, thus primary care may be more focused on quality of life for patients. Secondary care has more of a curative focus than primary care. Thus primary care has an appreciation of a longer journey due to extended patient contact; they develop long term relationships with patients as they treat them over a longer period of time, in some cases a lifetime.

Thus, knowledge of a patient’s preferences is an essential context in facilitating a home death. This allows preference discussions to open communication surrounding end-of-life care and ACP to occur (resources) which generates deeper understanding about palliative care and illness progression (reasoning) for all three parties involved: patient, carer and health care professional. However, if an emergency admission does happen, the hospital is not a favourable context for open communication strategies, as it is not equipped to take into account the resources (preference discussions and ACP) provided by primary care and changes the patient’s and family’s ownership (reasoning) of the ACP. Thus, preference discussions and ACP are integral in the community setting: they can prevent an emergency admission, and once an emergency admission has occurred they cannot be enacted due to the inhospitable context of hospital.

Context: Family and carers knowledge of the patient’s preferences The knowledge of patient preferences is an essential part of the ICP. Rachel and Linda (bereaved relatives) both explained how their husbands had expressed a strong preference to die at home and how these were stated very early in their palliative care journey.

Linda (bereaved relative): “No, he made it very clear from the first visit of the, of the nurse, because she, the district nurse pointed out that there was erm, very nice 24 hour doctors beds in (local palliative care unit)? But he made it very clear from that moment that was not for him, he wanted to die at home. If we could manage that, then that’s where he wanted to be.” Rachel (bereaved relative): “Ah when the, the night he was diagnosed he just turned to me and said I want to be at home.” Both women refused to accept any form of help that would result in their husband changing location, despite the difficulties they faced. Rachel turned down the offer of the palliative care unit when she was exhausted from caring for her husband;

Linda refused to consider planning her husband’s death elsewhere despite the anticipation of difficult symptoms.

Rachel (bereaved relative): “There was twice Dr. (name), she was lovely, she said, erm, it was the Saturday night she said would you like us to get him into (palliative care unit) for a couple of nights and I said no not now I've done the worst, you know.” Linda (bereaved relative): “But I don’t feel any resentment about what I didn’t do. Erm, I made it very clear, they were worried he was going to have a bleed, I said whatever he’s going to have he can have here, I’ll cope with it.” Both Rachel and Linda (bereaved relatives) explained that their dedication to their husbands’ home death was in part due to a pressure they felt to fulfil their dying husbands’ wishes.

Rachel (bereaved relative): “Aha, that was his wish. Yes because it, you felt as if you were doing whatever you could for him, you know? […] Ah yes that was what he wanted. You know, but. That still isn’t the national health’s fault. That was what he wanted. But then I suppose it comes back to when somebody’s terminally ill, their last wishes is what they want so you’ve got to work round, yes […] That was his choice, it was probably harder for me but it was his choice. But what do you do? Do you go against their wishes when they’re dying? You can’t can you.” Linda (bereaved relative): “That’s… I feel, erm, that was what (husband) wanted, and, I had to do everything I could to make that alright for him […] But he made it very clear from that moment that was not for him, he wanted to die at home. If we could manage that, then that’s where he wanted to be. And from that moment I realised how much it meant to him, so there was no way anybody was going to change that.” The experience described by the bereaved spouses - pressure, personal responsibility, dedication and loyalty - may not be felt as much by care home staff;

although it is possible that they may develop relationships and bond with long term residents. Regardless, the dedication family members feel to their loved one’s dying wish to remain at home is a context that discourages emergency admissions and facilitates a home death.


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Figure 37: CMOC2, open communication strategies to increase ‘home’ deaths Having preference discussions and ACP (resources) as part of the ICP encourages discussions about care, including place of care and what kind of care a person wishes to receive which empowers them to adhere to their palliative care plan (reasoning). These discussions can take place between a triad of people, health care professionals, the family and the patient. If a family member or carer knows the palliative care persons preferences (context) and the patient remains in their own or care home (context), open communication strategies can be used with the GP and more ‘home’ deaths occur, as shown in Figure 37.

CMOC3 – Care home deaths Outcome: No significant increase in care home deaths In order to find whether care home deaths were increasing, a one-way repeated measures ANOVA was conducted. This compared numbers of 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 thus sphericity assumed values are reported. There was no significant effect of time on care home deaths (F(5, 45) = 1.78, p.05,  p = 0.17).

The means and standard deviations for home deaths from 2007 to 2012 are presented in Table 16; the means show an increase in care home deaths since preICP implementation (2007) to most recent data (2012), but with variation between these two dates.

Table 16: Care home deaths in the participating GP practices using Death Audit data.

–  –  –

The means show small variation between years, with a large increase in the most recent data, 2011 to 2012. The standard deviations are increasing steadily for care home deaths from 2007 to 2012 (excluding 2010 to 2011). This means that the spread of numbers is becoming wider; they are not all as closely clustered around the mean as they were at the beginning of data collection (2007). Thus some practices have very few care home deaths, for example Practice M who had no care home deaths in 2012, and some practices have a lot more care home deaths in comparison, for example, Practice D who had 48 care home deaths in 2012. There is a wide range of values in the data, which increases with time. This could be attributed to some GP practices providing medical cover for more care homes than others. For example, Practice D provides the majority of care for residents in several care homes, whereas Practice M does not provide care for a specific care home in the locality. Thus as the negative contexts are replaced with more hospitable contexts (support from the family and deeper understanding about palliative care due to the ICPs efforts to discuss and plan death) and care home deaths increase, the mean increases (more patients die in their care home) and the scores vary more drastically, as practices who do not cover care homes cannot increase their score, whereas practices that do cover care homes increase their score substantially.

Despite care home deaths not showing a statistically significant increase from 2007 to 2012, they do show a large increase from 2011 to 2012, as shown in Figure 38.

This may be due to the recently implemented end-of-life care plan in care homes.

Figure 38: Mean number of care home deaths in the fourteen GP practices between 2007 and 2012, using Death Audit data.

Mechanism: Fear of reprimand and consequences of a ‘wrong’ decision Care home staff in the locality have a fear of reprimand. This was exemplified when a care home staff member explained how he and his colleagues feel that it is safer to call an ambulance in case of future questioning about their decision.

Care home staff member (FG3): “Erm, but I guess it is a bit like litigation in that you’ve got to cover yourself and when somebody comes to you and says well why didn’t you get emergency (services), I mean it’s like erm, resuscitation. Years ago we wouldn’t have even considered resuscitating any residents but now you resuscitate somebody unless you’ve been told otherwise not to.” A GP from the locality also commented upon care home staff members’ fear of reprimand and consequences, using recent examples.

GP1 (FG2): “The ambulance control have very strict criteria, with you know, they start resuscitating and get them in an ambulance, you can’t say excuse me they’re very old and palliative, I mean there was a case, there’s been a case recently in (name of care home) of a very old lady who dropped down, and the staff got in trouble for not resuscitating her. It’s difficult.” GP1 (FG1): “There was a case in a nursing home of, I’ll just tell you briefly so you understand my issue, a colleague who was working in a nursing home was looking after a lady who was clearly very elderly, clearly very ill and the family said they would not want her to be resuscitated… but the lady did not have capacity, and the GP quite rightly was worried about signing the DNR, because she wasn’t imminently about to die but he could hear the families views that they would not want her resuscitated.

He chose not to sign the DNR. Erm, because if you look at all of our GMC guidelines we are supposed to, erm, talk to the family about it and talk to the patient about it, and he sort of dilly dallied around, well lo and behold didn’t she go and literally clutch her chest and drop to the floor in the nursing home. The carer knew that the family has said that they wouldn’t want her resuscitated so she hesitated, phoned the ambulance and said this lady has arrested, but I know the family don’t want her resuscitated. The man, it was all recorded, and the operator said does this lady have a signed DNR? Well no she doesn’t but, well you will start CPR.

The poor lady, the poor lady survived the CPR, ended up in hospital and died. The nurse was arrested and disciplined for not starting CPR. Erm, and the family were up in arms that she had been resuscitated.” The GP also stated that patients’ family support is extremely important when a crisis occurs and care home staff need to manage death in the care home as opposed to calling for an ambulance and having the patient admitted.

GP1 (FG2): “I mean, it is part of the education we do with them (care home staff), but you have to remember some of the staff that, some of the staff are not, they’re just not paid to take that level of responsibility, because you’re actually deciding to, they can be, they can be just teenagers and it’s a hell of a responsibility isn’t it to ring up someone’s family and say your patient, you know, your mums deteriorated but we’re not doing anything, you know it’s very difficult for them, and I think, I think your back up then is the family. It’s the family that need to be saying to the staff, please do not, you know, we’ve already discussed this and this is what we want to happen. Your protection is the family.” Fear of reprimand and responsibility for death were also commented upon by one of the bereaved relatives, Ned. He also felt that these two factors played crucial roles in the high number of emergency admissions for palliative care patients from care homes. He referred to reprimand being not only institutional but also public, through the media.

Ned (bereaved relative): “And, err, your mother. Erm, but then, then you’ve got this terrible fear, you know of, of, I’m gunna get sued or am I going to get in the Newspapers you know, somebody died at (residential home) that should have gone to hospital and that, also the impulse of the carers to… to care! To worry… to care… Ring an ambulance! You know? Let’s see if we can get her fixed.” Ned (bereaved relative): “And nobody wants to be responsible (for death) either.” Although it is not a formally recognised version of ACP as stated by Deciding Right (NHS North East 2012) (such as a locality advance care plan, advance statement or DNACPR), in 2011 care homes started to implement their own form of end-of-life care planning (resource) when people first become residents at the care home. This incentivised end-of-life care plan (Appendix 35) is completed with the resident and their family members whilst they complete their initial general care plan. This care plan asks residents to state their preferences surrounding location of end-of-life care, their preferences for medical intervention, if residents have a DNACPR form, a LPA-HW and also addresses spiritual requirements and funeral arrangements.

Care home staff member: “There has been more emphasis on doing end-of-life care plans in the past few years (in care homes).

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