«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
Context: Palliative care at the top of the political agenda Prior to the introduction of the ICP, there were gaps in care which resulted in hospital admissions, OOH services were not routinely informed about palliative care patients unless they were nearing end-of-life, and there were few alternative options to a home or hospital death apart from a hospice outside the locality. In 2008 the policy context for palliative and end-of-life care changed significantly, with the publication of the End-of-Life Care Strategy by the Department of Health (2008). This was the year the ICP was introduced to the locality. A policy push of this type, which occurs at the early implementation stage can facilitate an innovation’s chance of success (Greenhalgh, Robert et al. 2004). This change (context) resulted in a focus on equality of resource provision for all palliative care patients. Early identification of palliative and end-of-life care patients in the End-ofLife Care Strategy (Department of Health 2008) may have contributed to the commissioners’ decision to fund the ICP, and instigated a desire for change in health care professionals in the locality. Thus, the publication of policies in palliative and end-of-life care may have increased motivation to adopt the ICP in the locality (Greenhalgh, Robert et al.
Figure 4: CMOC1, ICP intervention use and preferred place of death Summary The publication of the End-of-Life Care Strategy (Department of Health 2008) identified a need for enhanced palliative care services and put palliative and end-oflife care at the top of the political agenda in health care (context). At the time of this policy publication the locality introduced the ICP to provide enhanced services for those with palliative care needs approaching the end of their life (resources). This improved perceived ability and capacity to provide palliative care in the community (reasoning), with incentive from political directives. The ICP provided commissioned services, interventions and a planned pathway (resources) for patients that health care professionals could readily use. This instigated a change in reasoning in health care professionals, enhancing their capacity to provide palliative and end-of-life care in the community. Increased intervention use has a strong positive correlation with increased presumed preferred place of death; a regression analysis identified that intervention use predicts presumed preferred place of death (outcome). This indicates that the ICP ‘works’ in terms of outcomes for patients, as most people would least prefer to die in hospital (Gomes, Calanzani et al. 2011).
CMOC1 (Figure 4) shows this in diagrammatic format.
CMOC2 – Commissioned services in the ICP Outcome: Variable commissioned service use Interviews with palliative care patients and bereaved relatives highlighted that use of the palliative care unit and the Hospice at Home service (commissioned services) was variable. However, variable uptake does not reflect lack of value, but rather highlights the breadth of what was on offer to supplement people’s natural support networks. Quantitative data was not available to support the qualitative findings from the interviews in relation to commissioned service use.
Mechanism: Increased support for palliative care patients who need it The commissioned services provided more support for palliative care patients and their family members (resource) and were highlighted in interviews with some palliative care patients and bereaved relatives. It is beyond the remit of this study to explain how commissioned services have been made use of and whether they have been effective. However, interviews with palliative care patients and bereaved relatives highlighted that use of the services was variable. This was often due to individual patients’ or family members’ reasoning.
Interviewees explained why they did not accept offers from health care professionals to arrange their end-of-life care in the palliative care unit. Linda (bereaved relative) described how the district nurse offered this service very early in Linda’s husband’s palliative care journey. However, Linda’s husband was very clear that he wanted a home death, therefore when the palliative care unit was offered, he refused it.
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 (name of palliative care unit)?” The health care professionals involved in Mark’s (bereaved relative) mother’s care mentioned the palliative care unit to Mark. However, he never took this offer further as his mother was content at her care home.
Mark (bereaved relative): “Yeah I’d heard of it and I was aware what they did and I have friends who, a very good friend who’s mother is there at the moment, erm, so, it was mentioned, erm, but I don’t think she’d have wanted to go there, I don’t think, she was very happy where she was.” The aforementioned participants’ loved ones were informed of the palliative care unit’s services early in their palliative and end-of-life care journey. Rachel (bereaved relative) was offered this service much later and it may be that the timing of this offer was inappropriate, as she felt that she and her husband had overcome the most challenging parts of her husband’s end-of-life journey.
Rachel (bereaved relative): “So that was, er 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.” However it must also be noted that similar to Linda’s husband, Rachel’s husband also had a strong wish to be at home and this may have contributed to her decision to refuse admission to the palliative care unit. A palliative care patient’s wife, Barbara, described how the palliative care unit had not been offered by primary care, but by secondary care.
Barbara (Michael’s wife): “Yeah, they mentioned that at the hospital to you, you know, they said do you want to go to the (palliative care unit) we said no. Yes we prefer to be at home. They did mention that at the (hospital in town), but we did say he wanted to be at home.” Again, a desire to stay at home prompted the refusal of the palliative care unit.
Another palliative care patient who was decreasing in physical wellness and starting to require social care help was asked about the palliative care unit.
Interviewer: “Yes and have you ever stayed there?” Doris (palliative care patient): “No.” Interviewer: “No. And has that ever been mentioned to you?” Doris (palliative care patient): “No.” Doris (palliative care patient) had not been informed about the palliative care unit.
However she too had a great desire to remain in her own home for as long as possible, which she stated, but which was also evident due to her decreasing health and wish for social care help as opposed to consideration of a care home.
Doris (palliative care patient): “Oh I’d stay at home as long as possible, definitely.” Similar to Doris, Janet (palliative care patient) and her daughter Jill had also not been informed about the palliative care unit. However, unlike Doris they felt the palliative care unit was something they would definitely consider for Janet’s end-oflife care.
Janet (palliative care patient): “That sounds interesting actually I might…” Jill (Janet’s daughter): “I’ll ask about that.” Jill explained that she hadn’t known about the palliative care unit, but then blamed herself for not investigating available palliative care and just presuming there was only the one well-known hospice in the city centre 20 miles away.
“Jill (Janet’s daughter): Yeah, I mean, I, I, you know you mentioned a few, a few things about the (palliative care unit), I didn’t realise that, I didn’t realise” Janet (palliative care patient): “No, no, that is interesting” Jill (Janet’s daughter): “But you probably should go and find out about it anyway.” The interviews highlighted that the palliative care unit (resource) commissioned by the ICP was being offered to patients from both primary and secondary care, which is extremely important as it shows cohesion between services. Refusal of the palliative care unit was often due to the desire to remain at home (reasoning).
However, the inappropriate timing of offering the palliative care unit could also be a factor, with relatives feeling they have experienced ‘the worst’ of their loved one’s end-of-life care journey and not wishing to give up on their aim to enable a home death. Furthermore, it is very difficult for a relative to deny a dying person their preferred place of death (home) and resort to a palliative care unit, particularly when it is unplanned. This is even in the case of respite as often this can result in full endof-life care due to an unexpected decline in symptoms making it unfeasible for the patient to be transported back home, in case of death during the journey. However, two current palliative care patients had not been informed about the palliative care unit, one of whom was very interested in their services and planned to investigate it after the interview. It must be noted that despite people’s strong preferences to die at home it is to their advantage to be aware of other options excluding hospital.
However, it must also be noted that all of the patients who participated in the interviews or were discussed in the interviews (by bereaved relatives) were living or had lived at home or in a care home with strong support networks around them;
therefore they may have had less need to plan for a death elsewhere. The data indicates that the offer of care from the palliative care unit (resource) is often not taken due to personal circumstances including a strong will to die at home (reasoning).
Hospice at Home Service A Hospice at Home service was commissioned by the ICP and available for those patients living in their own home. Two of the bereaved relatives who cared for their husbands at home had very different experiences with the Hospice at Home service, one having contact from the start of her husband’s palliative care journey and the other not being aware of the service.
Linda (bereaved relative): “Erm, I could have done, they were very good, they did ring me up.” Rachel (bereaved relative): “I’ve never been in contact with (Hospice at Home), they’ve never been in contact with me.” Linda used the Hospice at Home’s night sitters in her husband’s end-of-life period, as did Caroline. However, Caroline had night sitters for around two weeks prior to her mother’s death, whereas Linda only had them on the evening of her husband’s death. Both bereaved relatives had a positive experience with the Hospice at Home night sitters and appreciated their efforts to prognosticate the dying process so that they could be with their loved ones when they passed away.
Linda (bereaved relative): “I did have them at the last day, the last night, they sent a, because I’d been up the night before, and friends and myself had, erm, kind of, did a shift during the night because (husband) was unconscious so we kind of err had no sleep that night, and as Dr. (name) said, he thought it was a good idea that, somebody from the hospice came out, and I had a nurse on the night (husband) died. There was, there was a nurse sitting with him while I was in another room but getting up at a you know, sort of at an interval, and she got me in time to be with him. So yes the (Hospice at Home).” Caroline (bereaved relative): “Um and it was a lady from the (Hospice at Home) who was there when mummy died who woke me so I was there for her last minutes and that was very, wonderful. Absolutely wonderful.” Doris, a palliative care patient explained how she had used the Hospice at Home’s transport service to get to her hospital appointments. Doris really valued the one to one nature of the transport service and the way it allowed her to attend appointments without using an ambulance. Doris evaluated the Hospice at Home transport service positively, describing how she has never felt the need to use another transport service.
Doris (palliative care patient): “I tell you they’ve (Hospice at Home) been very very good that way. Very good… I have always, always used them I haven’t ever used anybody else actually.” One of the palliative care patients interviewed had not been informed about the Hospice at Home service, but the other two palliative care patients interviewed were aware of it. Three out of four of the bereaved relatives were aware of the Hospice at Home service. Reasons for not using the service included personal circumstances, as Rachel, Linda and Barbara (palliative care patient’s wife) explained.
Rachel (bereaved relative): “Right, right then, well to be fair I used to, well I was still sleeping with (husband) I slept in the bed with him every night because that was the way he wanted it. Erm, even the night before he died I was still in the bed with him so that would never have worked really because he wouldn’t have let us go into another room you know, because he was frightened. So that (night sitters), that wouldn’t have worked I don’t think.” Linda (bereaved relative): “So yes the (Hospice at Home). I could have used them more, but, I didn’t have the need to. I had friends, and family around me. I didn’t, you know, if I needed them to sit in with (husband), because he was never left, I would have used them more, my only reason for not using them was because I had other support.” Barbara (palliative care patient’s wife): “Ah the neighbours, you know, they come in and, yesterday, last week, and there’s a one coming tomorrow afternoon, just, erm as I say we’ve got good neighbours, there’s a gentleman along the street and there’s a lady along the other side. They’re all, they’re all good.” A perceived strong home support system was pivotal in not requiring Hospice at Home services, as highlighted by Linda and Barbara above. Personal circumstances and preferences (reasoning), as Rachel explains, are also very important in reference to uptake of the service.