Participants
The qualitative methodology used in this study was to gain an in-depth understanding of bereaved family experiences of care for their relative in the RAC setting. In keeping with that approach, demographic data were collected in the context of the interviews. A brief overview is provided. Eight interviews with bereaved family members (7 women, 1 man) were conducted before SHARE. Interviewees were most often between the ages of 70-79 and the majority (8) identified as NZ European and reported Christianity as their religion (4). Five of the decedent residents had diagnoses of dementia (Table 1). Ten interviews post-intervention bereaved family member interviews were completed. The majority of participants were of European ethnicity (8) and female (7). Half of the participants were between the ages of 70-79 years (Table 1). Half of the deceased relatives post-SHARE had a diagnosis of dementia. The majority of deceased residents both pre and post SHARE had been ill for less than one year (Table 1). To protect the confidentiality of both participants and the residential aged care facilities, quotes from participants were assigned pseudonyms based on a colour (e.g. emerald, garnet, etc.).
Themes
Three themes outlined key components of palliative care that were important to relatives’ experience: communication with staff, systems of care, and hospice involvement. Comparisons in the above themes between the experiences of bereaved families at the start of SHARE and the finish are represented as subthemes (Figure 1). A fourth theme, entitled ‘challenges’ outlined issues that persisted across SHARE. Subthemes included relationship with GP’s, staff shortages, and turnover. These issues were perceived by families as continuing barriers to achieving better palliative care for their relatives.
Communication of resident condition:
Start-SHARE
Lack of awareness. A key part of the SHARE intervention was teaching nurses how to effectively communicate with families about the transition to a palliative care approach and what to expect. Some family members described not finding out their family member was approaching the end of life until days before their relative’s death.
Right, did the staff explain to you what might happen, the process of his dying? Did they talk to you about that, you might expect this or he might do this?
No, nothing like that.
Interviewer: So you had no idea what was going to happen, or how?
No, none at all, none at all. (Emerald)
Finish-SHARE
Greater Awareness. At the end of SHARE, however, while most of the relatives had no knowledge of any pathways (e.g. Liverpool Care Pathway) that their relatives might be on, they did know when they were dying. Many family members recalled making advance care plans, alongside an RN and their relative. Many also recall being told their relative was heading towards the end of life. For many families, this allowed them to organise family before their relatives died and created an environment that was less distressing before death. The following quote outlines the planning and communication between RAC staff and the family member that allowed for a better-perceived death.
But you know, they took me aside and made sure that I understood what the, what the process was and how it would work. And to make sure that I actually understood - I guess that’s before them starting the morphine, it was pretty obvious by then… And they got her stable and I wasn’t going to go home, but they got her stable and she was quite good. And I went home, I’m one of five so I contacted all my siblings and said, look Mum’s not in a good space but she’s stable, but I just think you need to know this. You know, if you’re available to come in tomorrow that would probably be a good idea to see her. (Alba)
Systems of Care
Start-SHARE
Systems failures. Systems of care sometimes let families down, especially when it came to caring for people with dementia:
He had a fall in the bedroom, that’s right, he fell and hit his mouth on the dressing table. And of course, there was blood and everything, so I took him down to [urgent care], that was it, and they said they couldn’t do the plastic surgery. So we went out to [hospital], I took him out to [hospital], so they examined him out there. They said they couldn’t do anything that night because he was on Warfarin, so we were sent home from [hospital] and then told to come back the next morning at seven. Am I allowed to say haha? (Emerald)
Finish-SHARE
Increased Attention. Many families felt like their relative was well cared for at the end of SHARE. All commented that the actual end of life moments were peaceful and calm. This is a change from the start of SHARE and may be attributable to the increased attention that has been placed on the end of life processes and improved communication. Staff were well versed in the care of their relative, as well as relaying meetings with doctors and changes in medication: One family commented on the increased attention and open lines of communication:
They were good. Very good. Like change of medicine or anything, I’ll always get a phone call...
Oh, the Doctors gone to see [resident] and we’re changing his medication. Or we’re doing something. So, no they, they kept me up in touch all the time. (Azure)
One daughter commented on the quality of care and the peace of mind gained:
I mean I really do feel that she had the best care and the best dying experience…. And it makes me feel so good to be able to go to bed at night and she’s, she’s had that. (Violet)
Hospice Involvement
Start-SHARE
Lack of input. Another key aspect of SHARE was a collaboration between Hospice Nurse Specialists and RAC staff, particularly RNs and formal caregivers. At the start of SHARE, family members did not report Hospice having any input in their relative’s care, or that this was even an option for them.
Interviewer: And hospice wasn’t involved with your Dad?
No.
Interviewer: No, no, okay.
No, we didn’t have any hospice people at all.
Interviewer: And you weren’t asked about it?
No, no we weren’t. I don’t know, is that an option, can you get that? I wouldn’t have a clue. No, we were never, that was never offered or asked. (Grey)
Finish-SHARE
Input. Having the SHARE intervention integrated into palliative care provision within RAC facilities meant there was a collaboration between Hospice Nurse Specialists and RAC staff. As a result, some families were aware of Hospice involvement in their care, although this was still primarily for residents with cancer diagnoses. More generally, however, the presence of the Hospice Nurse Specialists seemed to aid families in feeling more aware of the process of dying and offered them extra support for what would happen after death. In this way, families felt looked after and involved in their relative’s passing.
According to Mrs. H, she remember [Nurse X] and some other Nurses, they are coming from Hospice, have talked to her about [resident] is dying, what she need to do. They have people talk to her about making an arrangement for the funeral. She even remembers they have explained to her a few days before [resident] died they are going to give him a small dose of… to five milligrams of morphine, how they going to care for him. So those parts she was very much involved and have a conversation. (Navy)
Continuing Challenges to the Culture of Care
Relationship with GP. Overall the relationship with the GP was a concern. One participant was so angry with the GP’s attitude towards her and her father that she made an official complaint. This seemed to be the result of the doctor and nursing staff not communicating well and this resulted in the GP writing an apology to the daughter. Another felt that the GP just went through the motions and did not show any concern for her mother’s welfare:
Interviewer: On a scale of 1-5?
She would be on the lower [end], she might have been an efficient person, but mum couldn't stand her. She was absolutely useless in end of life care; she didn't care less about mum.
Oh we complained, my daughter complained badly about the doctor’s attitude, etc, etc, so we’ve got a big, long letter of apology from her, and why she did what she did. (Indigo)
The above respondent talked about the lack of communication between the staff and the GP. There appeared to be no syringe driver on site and there were difficulties getting one as well as the medication to put in it; finally, this was completed through advice from the hospice GP and the facility.
GP Communication. GP’s communication skills continued to be variable in quality from the families’ perspective. One participant had moved her mother from one facility (A) to another facility (B). In facility (A) the resident had been on iron tablets for a long time. The GP in facility (A) had not communicated clearly with the daughter concerning the treatment decisions, leaving her concerned. In Facility (B) the GP felt further investigation was required. The quote illustrates the damaging result of an inadequate discussion of the care options with the mother and daughter.
As soon as she got into facility (B) the Doctor there said her bloods aren’t right, which I’d known from the one up in facility A, but they just kept giving her iron tablets. And she and the Doctor at facility (B) said, no, we need to find out why her bloods aren’t right. So they sent her to Hospital, so within a week of her coming down here she was sent to the Hospital. (Garnet)
Many did not see the GP at all and relied on communication and information through the nurse manager. Some participants found their lack of interaction with the GP worrying and disturbing:
Interviewer: Did you see the Doctor at all?
Nope. Had no faith in him.
Interviewer: Did you not?
Yeah. There were, there were many times I asked, when does he visit this place? Can I make an appointment please to see him? I’d like to sit with him and my sister. The only, the only medical professions I had, had face to face consultation with was the hospital. [Family member] and I said, yay, we’d like to speak to her Doctor. Nothing. (Cyan)
Fewer Staff. A private funding model for the facilities in this study created increasing challenges for the implementation of SHARE. Three of the participants talked about staffing levels, and two had relatives at the same facility where there was an obvious shift in the numbers of staff and also the culture of care. Both interviewees noted that staff suddenly had less time for their relatives, and while they did their job satisfactorily, it was completed quickly with less time allocated and less conversation. One relative specifically went in to feed his father because he knew that the staff did not have time:
Even his, like at the end he needed to be fed. So I’d go and make, I always went over and well I left here about 10:30, 11 so I was there for lunch, give the staff some time. And they, they appreciated it. You know.
Interviewer: Did you notice that? That they were pressed for time.
Oh yeah, well I know that, so that’s why I did it. I know that they have, well I know, 60 was it, 65 there and there’s three girls at lunch trying to get them all fed. So they haven’t got time to feed each and everyone that required it. (Azure)
Definitely fewer staff. And that was a large part of it too. They always, you know, would be like, oh we’re so understaffed and, I didn’t often have a need to ring the bell but on a couple of times that I did, you know, it might be a toileting issue that I, I needed help with… And in situations like that, you would wait you know, to the point where like just sit there Mum and don’t move. And I’d go off looking for somebody. They hadn’t come to answer the bell. (Alba)
Turnover. Some commented that the staff would change continually, especially for those residents who had been at the facility over several years. This became confusing for next of kin, who dealt with it by by-passing the health care assistants and going to the nurse manager for any information:
Because they were so different, different people there all the time and I’d ask where’s such and such? Where’s so and so? And, and John would be doing the same, and it got to the stage where we didn’t want to ask, you know. So if we had a problem we’d go and see the manager. (Cyan)