«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
The initial programme theory (4) stated that innate coping style of the GP and patient (context) facilitates a consultation if matched (mechanism), making preference discussions and use of the locality advance care plan more likely to occur (outcome). The findings did not fully support the programme theory. Matched coping style may facilitate consultations including ACP when both the GP and patient are high monitors and low blunters. However, as discussed, patients are individual and their reasoning changes; as does health care professionals’ (as described in relation to preference discussions in the previous chapter) in response to a change in context, when the patient’s condition, needs or psychological acceptance of their illness changes. This can affect whether they broach preference discussions and their monitoring and blunting can offer little facilitation to preference discussions and ACP in practice. Furthermore, the previous chapter suggests that health care professionals struggle to implement the locality advance care plan, thus this may not be the most effective tool to evaluate consultations with.
In conclusion, the analysis offers interesting insights into attempts at and reviews of an advance care plan. The results of this analysis are limited by the low participant numbers. However, although the study suggests that the MBSS does not provide any coherent framework to improve consultation recordings, it does offer information on how we can understand communication issues better in a society that struggles to discuss death and dying, even in the health care domain. Palliative care consultation recordings are also rare in the literature. This chapter offers key insights into how flexible tools such as ACP need to be and how difficult they are to implement in practice, where each and every patient is unique and varies over time.
Difficult conversations must take place in order to plan for a good death that is patient centred. ACP can help patients to identify where they wish to be cared for if their condition is to deteriorate and where they wish to die. Gomes, Calanzani et al.
(2011) have identified that in the North of England and across England as a whole the most preferred place of death is in the person’s own home. The next chapter focuses on facilitating home deaths for patients in the community and in care homes (which are considered as their own home).
Chapter 8: Facilitating a home death This chapter describes CMOCs in relation to home deaths and avoidance of emergency admissions. In order to avoid unplanned admissions, a lot of responsibility is placed on those around the patient in their home environment, whether this is care home staff, carers or family members. This chapter will focus on facilitating a home death due to it being a preferable location of death. It will consider a home death as a quantifiable measure of the effectiveness of palliative care services in primary care, as others in the literature have done (Agar, Currow et al. 2008, Bower, Roderick et al. 2010).
Initial question asked of the data The programme theory and subsidiary questions that this chapter focuses on were
first stated in the methodology chapter as:
Programme theory 5: The ICP can facilitate preferred place of death (outcome) and prevent emergency admissions (outcomes) through identifying patient preferences (context) and using the locality advance care
The CMOCs in this chapter focus on open communication strategies. CMOC1 explains the increase in home deaths in the locality in reference to easily accessible palliative care expertise. CMOC2 explains the increase in both home and care home deaths using a multi component communication strategy, whereas CMOC3 elucidates why care home deaths may not have increased significantly until 2011.
CMOC1 – Caring for a loved one who is dying Outcome: Increase in home deaths A one-way repeated measures ANOVA was conducted to compare numbers of 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 the relevant values are reported. There was a significant effect of time on home deaths (F(5, 55) = 2.47, p.05, p = 0.18). Using the guidelines proposed by Cohen (1988) for the p (0.01 = small, 0.06 = moderate, 0.14 = large effect), this result indicates a large effect size. The means and standard deviations for home deaths from 2007 to 2012 are presented in Table 14; the means show an overall increase in home deaths from 2007 to 2012, however there is not a steady increase in home deaths over time.
Table 14: Descriptive statistics for home deaths in the participating GP practices
Figure 32: Mean number of home deaths in the fourteen GP practices between 2007 and 2012, using Death Audit data.
Figure 32 shows increases in home deaths in the year that the palliative care pathway was introduced (2008); this then plateaued from 2009 to 2010, followed by a substantial drop from 2010 to 2011. Home deaths then increased from 2011 to 2012.
Mechanism: Easily accessible palliative expertise Rachel (bereaved relative) was provided with an OOH district nursing service immediate contact telephone number (resource) after she expressed her anxieties to health care professionals. This telephone number provided her with quick access to palliative and end-of-life expertise and eased her anxieties. She needed to know that she could telephone someone who knew about the process of dying, who could reassure her that the symptoms her husband had were normal, or do something about them by coming to her house and providing treatment (reasoning). Similarly, during the day she explained that her anxiety was eased by the knowledge that she could go to her local GP practice for immediate help (resource) if she were to need it, in the village where she lived.
Rachel (bereaved relative): “And that was better because then I knew I could ring them at any time, through the night, because everything’s always worse through the night. And it was, you felt, alone, you know, on your own. Well when you had this number (OOH immediate contact) at least you knew you could ring somebody and you could speak to somebody straight away […] Erm, as I say it was mainly through the night the support, there was nothing till the last week, or until the Thursday. And that was when as I say I got a mobile number and that was when you felt better, I didn’t need to ring it on the Thursday night but definitely on the Friday night when he was pulling the drip out.” Rachel (bereaved relative): “Because at least you knew you could just go up (to the GP surgery) and, and I didn’t do that even. It was just knowing that you could, yes.” Rachel (bereaved relative): “You know, so. So there’s just nothing from the surgery closing to the next morning, it’s just gone completely.” Rachel highlights that it was not just loneliness at night and weekends that caused her fear and anxiety by stating that contacting her family did not ease her negative emotions. It was the knowledge of easy access to palliative and end-of-life advice (resource) she craved, the knowledge that she had it if and when she needed it was sufficient to ease her anxieties (reasoning).
Rachel (bereaved relative): “You were just left as I say with this person that was dying and you didn’t know symptoms to look for, or, ahhh, I cannot explain it. Alone. That’s the feeling that you got.
Alone. You know I had me family I could ring but they couldn’t diagnose anything or tell us what to do.” The family member’s reasoning was changed, as her anxieties were eased in response to the knowledge of easily accessible palliative and end-of-life advice: the GP surgery during the day and the OOH nursing telephone number (resources). This helped Rachel to keep her husband at home and not call the emergency services.
This is supported by the literature; carers and patients take reassurance from knowing that they will receive skilled support quickly if they need help OOH (Ellershaw and Ward 2003, Eyre 2010).
Context: Death is hidden Several of the participants discussed death and dying in their interviews and its relation to society, in terms of how death is often hidden away from the public.
They also offered reasons as to why this might be and demonstrated that they themselves had difficulty in discussing death and dying, which may be related to this taboo.
Caroline (bereaved relative): “And, but there is, people don’t, because we hide the old away, urm, people don’t understand that people aren’t just alive and then die, you know there is this period of deterioration, and we’re not very good at it.” In the quote above Caroline describes how death is hidden from the public. She then states how she feels that the past has had an influence on how society deals with death and dying. She felt that prior to World War I death and dying was not as much of a taboo in British society, especially because death was experienced more often at younger ages and in the home.
Caroline (bereaved relative): “The first World War resulted in us all not wanting to think about death. And there are lots of poetry about death, but the Victorians were very into death. I’ve got some wonderful mourning jewellery that (my husband’s) mother has given me that was her grandmothers, and people would wear specific types of of jewellery and, and there was a much, you know, because life was much, you know, life was hard and life was earnest. What is it, ‘Nasty, British and short’. Who was that? […] And so, families were always experiencing the loss of life, and the loss of life amongst lots of different ages and so death was very much a part of life. And death has become something that doesn’t happen at home, it happens in a hospital, it happens somewhere away, we don’t see it, we’re protected from it. And we need to debunk that somehow, without going back to the point of, you know, what was she called? Miss Havisham, who, you know. The rooms don’t change because somebody’s died, and, no body would move and we don’t need to go back to that but we do need to erm, accept that most of us don’t want to have that stroke and then shuffle round an old peoples home for the next 5 years, 10 years, 15 years, whatever it is, not able to live our life to the full.” In the above quote Caroline provides an explanation as to why death may have become hidden, referring to World War I.
Caroline explains how death is hidden, which means that people are not used to providing care for dying relatives. However, the achievement of a home death heavily depends on a carer’s ability and willingness to provide home care (Gomes and Higginson 2006, Grande and Ewing 2008). Informal carers are essential to the achievement of end-of-life care and death at home, and to policy aims of facilitating patient choice towards end-of-life (Department of Health 2008, Grande, Stajduhar et al. 2009). However, since death has been removed from the community and hospitalised, the general public can be anxious about death and often have no experience of caring for a person whose care is being shaped by an understanding that they are dying. A GP in FG3 commented on how family carers assume a lot of responsibility for which they have no training when caring for a dying loved one.
GP5 (FG3): When you’re talking about proactive-ness, you’re talking about giving someone some confidence which you cannot put on a tick box, you’re trying to give someone confidence to manage someone close to them dying, which is a huge achievement when they actually achieve it, if you think about it, dying in their own home, especially with difficult symptoms. So and to do it successfully and feel like they’ve been supported and dignity and you know, Macmillan nurses train for years to be able to do that and we’re expecting someone to do it in the space of a few months with all the emotions going on. So I think there’s this huge amount of subtlety about how you empower someone, how you get them confident.” Although health care professionals try to empower carers to look after their loved ones at home, anxiety and fear can increase as end-of-life approaches and symptoms worsen.
Rachel (bereaved relative): “So you’re sent home with this person that’s dying and you don’t know what to do, at the weekend. So that’s another thing that you know that, there could be a little bit more help there. Erm, cos I said to the nurse in the hospital well what do I do if anything happens and she says well what do you mean if anything happens?” Weekends were referred to by both Rachel (above) and Linda (below) as particularly fear and anxiety-provoking times. In both cases this was due to reduced health care professional contact.
Linda (bereaved relative): “I’d say that’s the only time I felt vulnerable. Weekends.” Linda (bereaved relative): “That (weekends) was the only thing that rocked the boat a bit. At the end.” Linda (bereaved relative): “Yeah you feel vulnerable and I, during the week they came in three times a day, weekends it’s down to two.” Linda (bereaved relative): “But, erm, I would say the only thing in this whole, this… looking after someone at home, as the only breakthrough in that is weekends. Because weekends, obviously people are off, and they have err, a backup, or somebody who’s on call at week… or it’s the weekend nurse, or whoever and they don’t come in as often. And I had to call out at the end somebody in the middle of the night and they had to come from (name of place far away).” In the quote above Linda refers to the difficulties of not having easily accessible palliative expertise at the weekend and throughout the night. Rachel also felt vulnerable through the night.