«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
And actually in (locality) we get assessed by a local authority and it’s all linked to how much we get paid. And they’ve had a big emphasis on end-of-life care plans and basically you get marked down if you don’t have one. So there has been an increase in endof-life care planning” The care home end-of-life care planning may be a more effective way of achieving a statement of preferences that are active in the minds of carers. A GP in FG3 stated that they felt potentially care home staff were better equipped to discuss end-of-life care with residents due to their experience of witnessing previous patients’ journeys through palliative and end-of-life care.
GP 6 (FG3): “Are we any more expert in discussing that (preferences) than you (care home staff)?... I mean you’ve seen patients who’ve come and gone through the home, you’ve seen good deaths and you’ve seen the benefits of having a care plan, you’ve seen the benefits of, the disadvantage of not having a DNAR, because they end up in hospital and things happen to them.
Maybe people like you are the best people (to implement advance care plans).” Another GP in FG3 felt that the use of end-of-life care planning by care home staff may provide them with more ownership of the plan (reasoning) and avoid crises of confidence in actions when medical emergencies occur, as they have a familiar, care home completed plan to refer to.
GP 4 (FG3): “That’s kind of giving the carers (care home staff) more ownership of this instead of being just medically driven.” As stated previously, the patient’s family is a strong source of support for care home workers when managing death. This end-of-life care plan is often carried out with family members present and thus may provide care home workers with more reassurance of their support. Furthermore, care home staff reasoning is being changed to have more ownership of a resident’s preferences for end-of-life care through use of the recently implemented end-of-life care plan (resource) in care homes. This makes the residents’ preferences more active in the minds of those who care for them (care home staff) than if preferences are discussed with a health care professional, thus increasing their understanding and ownership of the plan for an end-of-life situation. This increased ownership from the care home end-of-life care plan may reduce care home staffs’ fear of reprimand and would explain the substantial increase in care home deaths from 2011 to 2012 as it was implemented in 2011.
Context: Litigious society Health care professional-patient relationships produce potential civil, criminal and administrative liability (Selkin 2011). This poses an issue for those caring for palliative care patients, especially when they are caring in a professional setting and not regarded as a family member/carer (such as a care home worker). Discussions by participants in FG2 indicated that often emergency admissions are not initiated by a GP but by a member of the patient’s family or care home staff. This was highlighted as a concern, as when an emergency admission is initiated by anyone other than health care professionals that are significantly involved in the patient’s care, often important palliative care information is not conveyed to secondary care and patients receive unwanted procedures. FG2 and FG3 highlighted that care homes may initiate emergency admissions, as a result of staff shortages and lack of confidence to deal with end-of-life.
GP1 (FG2): “In some of the patients in care homes the reason it (emergency admission) happens is because of, erm, staffing levels on the weekend, and it can simply come down to that confidence and grade of staff in a nursing home who are not prepared to take responsibility and not paid to, and it can simply be down to that, a certain member of staff, on a weekend, in a care home, who doesn’t have confidence, and they ring, well they ring (emergency services) and then they’re triaged by the ambulance control…” GP 4 (FG3): “I think it also comes down to staffing levels in care homes because it does vary from home to home undoubtedly. I mean that would probably sway it one way or another whether people go to hospital or stay in the facility”.
The care home is a location where an emergency admission is more likely to occur, with the participants of FG2 identifying that many emergency admissions come from care homes in the locality. Within the care home there are several contexts which make an emergency admission more probable: the reduced number of staff in care homes at weekends and the competence, confidence or responsibility of care home staff. Most care home staff do not have expertise in palliative care, leaving them with low confidence to take responsibility in an end-of-life emergency situation with a resident. A care home staff member’s job is usually related to basic care needs as opposed to decision making surrounding whether to attempt CPR on site or call an ambulance. However these staff members are regularly confronted with the need to make such decisions due to the population that they care for, despite their lack of knowledge and expertise (context).
However, the introduction of the care home end-of-life care plan has lessened the effect of the litigious context; care home staff now have ownership of the end-oflife care plan and thus have a heightened awareness to patients preferences, as identified as crucial previously in CMOC2. They also have increased support from the family which can help them to keep the patient at home when an end-of-life crises occurs.
Figure 39: CMOC3, care home deaths It is important to note here the difference between CMOC1 and CMOC3, specifically the differences between paid carers and family members who act as carers. A family member who acts as a carer for a dying relative has less fear of reprimand than a paid carer. A paid carer is acting within a job role rather than as a loved one who values the patient’s interests above all else. Thus open communication strategies between patients, family members (who act as carers) and health care professionals have the potential to be less formal (preference discussions as opposed to ACP) and the patient may still die in their preferred place, as their family member will ensure that this occurs. However, a paid carer, despite knowing the patient’s wishes, may not have as strong a will or remit to provide the patient’s preferred care. Thus inherent in the contexts in CMOC1 and CMOC3 are that the carers are family members or paid, respectively.
It is important that the people who care for palliative care patients have this person’s preferences active in their mind and have some form of involvement and ownership of them. This means that if a crisis occurs, such as a sudden deterioration or collapse, the carer knows what to do. In care homes, staff need to have this heightened awareness. Care home staff have recently started to use end-of-life care plans (resource) which in a litigious society (context) gives them more ownership of the patient’s care in a crisis (reasoning), as they have use of a familiar, care home completed document. This may have accounted for the increase in care home deaths from 2011 (outcome). This is depicted in Figure 39. Despite often being young and not having a lot of training in palliative care, care home staff or one of their colleagues will have completed this end-of-life care plan with the patient which provides them with the patient’s family support and knowledge and ownership of patients’ preferences. The end-of-life care plan has only been implemented recently and may be the reason why care home deaths have increased a lot more between 2011 and 2012, in comparison to earlier years, despite the ICP being implemented.
Despite the care home end-of-life care plan not officially comprising part of the ICP its very existence contributes to care in this area. It is based on care planning principles and aims to identify patient preferences, thus it has the same ethos as the ICP. It is also in line with national and local policy (Department of Health 2008, NHS North East 2012). However, the crucial difference is that it is created for use by and implemented by care home staff. The reality of practice is complex and this CMOC recognises this.
Chapter Summary Three CMOCs have been established that result in varying outcomes. CMOC1 identified that home deaths are increasing in the locality (outcome), despite death being hidden from society in hospital in more recent history (context), due to the access carers had to immediate clinical advice (mechanism). CMOC2 identified that ‘home’ (own home and care home) deaths are increasing, with knowledge of patient preferences an essential context, which facilitates open communication strategies such as formal preference discussions and ACP (resources) that empower patients and their family members or carers (reasoning). However, if an emergency admission occurs, this CMOC is unable to ‘fire’ at all, as hospital is not a supportive context. CMOC1 and CMOC2 indicate that the ICP is achieving positive outcomes and keeping patients at home (care home and own home). However, CMOC3 indicates that care home deaths alone are not significantly increasing over time (outcome). This could be due to the litigious society context which results in care home staff having a fear of reprimand (reasoning) when confronted with end-of-life crises due to no ownership of patients’ preferences for end-of-life care (reasoning).
Yet, if the care home resident has a care home end-of-life care plan (resource) this can result in care home staff having a greater ownership of the residents preferences (reasoning) and less fear of reprimand. Thus the introduction of the care home endof-life care plan has resulted in less negative implications of the litigious context, as care home staff are now more likely to be aware of patients’ preferences with support from their family. This has contributed to an increase in care home deaths from 2011 to 2012 (outcome). The care home end-of-life care plan is based on the same principles as the locality advance care plan and aims to identify preferences to ensure a good death.
In answer to the research question initially posed, the ICP does work for patients who wish to have a home death. However, until 2011 the ICP may have worked better for those in their own homes (as opposed to care homes) due to factors such as easy access to palliative expertise and multi component open communication strategies involving family members which are stronger than with care home staff due to personal allegiances. The ICP works to keep patients at home through open communication strategies; in each CMOC this is the common theme.
Communication with expertise in OOH (CMOC1), use of preference discussions and the locality advance care plan as communication strategies (CMOC2), and care home staff’s increased understanding (ownership) of residents’ preferences due to use of the end-of-life care plan in care homes (CMOC3).
The programme theory initially stated was that the ICP can facilitate preferred place of death (outcome) and prevent emergency admissions (outcomes) by identifying patient preferences (context) and using ACP (mechanism). CMOCs identified that the ICP can facilitate home deaths, however, use of the ICP in care homes may have been laboured due to care home staff feeling disempowered to manage death and dying until implementation of the end-of-life care planning started in 2011. The programme theory should be modified to say that the ICP can facilitate ‘home’ death (outcomes) through use of open communication strategies (mechanism) in hospitable contexts (knowledge of patient preferences) that overcome societal issues related to palliative care (death hidden from community, social taboo of death and dying and litigious society).
This chapter concludes the results section of the thesis. The findings will be summarised in the next section and discussed in relation to relevant literature in the Discussion. Implications for practice and research will also be outlined.
In this discussion the overall programme theory of the ICP will be explored, which identifies the ICP as a translational tool to implement shared decision making, patient centred care and proactivity in practice. Study findings will then be discussed in terms of the existing literature on ICPs. Implications for practice, challenges, limitations and future research will also be considered.
The overall programme theory; the ICP as a translational tool The literature in the introduction highlighted translational problems between palliative care policies, the concepts they promote and practice (Chapter 1, p.6).
This thesis highlighted various constraints to implementing proactive care, patient centred care and shared decision making, including the ageing population, time constraints in primary care and definitions of palliative and end-of-life care.
Candidate theories that offer some explanation as to how translation might happen in practice despite these barriers were identified – CQI, diffusion of innovation and NPT. CQI was used to understand how the ICP worked in terms of PCQV; the visits provided motivation for health care professionals delivering the ICP and a nonjudgemental atmosphere to discuss and solve problems. The Diffusion of Innovation Theory offered exploratory avenues for embeddedness including relative advantage, opinion leads and champions. However, the NPT was not relied upon as this model focuses on the routinisation of a social programme and since the ICP had only been in place for 2 years when data collection took place its explanatory potential was limited. All of the refined programme theories were combined in order to create Figure 40; the overall programme theory of the ICP explaining its success. This programme theory highlights the ICP as a translational tool underpinned by three key mechanisms - proactivity, patient centred care and shared decision making.
Figure 40: The overall programme theory of the ICP.
The ICP is a tool that helps the translation of the political mandate into practice.
“Staff on the ground… do not stand to gain from pronouncements within policies and government reviews about the need for good communication. They also need to be provided with the resources… to implement good communication” (Parry 2013, p.