While it might be expected that communication would be more straight-forward between staff members, as they share a background in healthcare and are used to the hospital environment and routines, it appeared that differences in interpretation of clinical situations could occur frequently between staff members too.
I asked Susan, a staff nurse on ward A, about whether she had ever disagreed with the doctor’s perspective, or felt that the doctors were continuing active treatment when she felt the patient was dying:
“Very rarely. But I have mentioned it to one of the consultants before when I thought that was happening……….I remember the consultant telling me why he felt it wasn’t the right time to stop it, or that we shouldn’t stop it right now. And what he said, I hadn’t actually thought about, you know what I mean? So there was a medical reason that perhaps as a nurse I hadn’t thought of straight away. But the medical reason he gave was, I thought ‘oh yeah fine, I didn’t think of that’, you know? That’s fine. So yes, so often I think, and maybe from more junior nurses as well, they don’t always think of the medical side of things. Which obviously that’s why there’s doctors and that’s why there’s nurses, you know?”
Interview with Susan, senior staff nurse on ward A, 20/08/14 p3
Susan’s account highlights the significance of staff relationships which enable dialogue, sharing of opinions and understanding. On first inspection of the situation she had not understood the doctor’s perspective. But once the doctor explained further information about the situation, she agreed with the doctor’s management. She suggested that she had simply not had all of the relevant clinical information.
On other occasions it appeared that varying perspectives were not always due to a lack of information alone. Instead varying values underpinning perspectives about how deteriorating patients ought to be managed could be thrown into sharp relief. I asked Anne, one of the staff nurses on ward A, whether she felt able to speak to a consultant if she disagreed with their management of a dying patient. Anne described what she felt was a particularly problematic area - patients approaching end-of-life on NIV:
“A lot of the nurses will say to the doctors, you know, you need to either do something about it or the NIV needs to be taken off so that the patient can actually die
comfortably. Especially when you know they’re going to die. It’s not nice having the NIV machine on if you know they’re going to die. So I think it’s difficult though, because even if we suggest that, nobody stops you suggesting how the patient should
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be cared for, but it’s whether you’re listened to or not. And a lot of the time I don’t think you’re listened to as a nurse. In regards to that, anyway. Because the doctors are so passionate about making them better, and doing everything they can to give them the best fighting chance. I don’t think they necessarily like to hear us say, we think you should, we think you should withdraw”.
Interview with Anne, Staff Nurse, Ward A, 03/03/15 p7
Though Anne did not mention conflicting values as a cause of the difficulty, they were implicit in her account and concerned how staff members recognised ‘dying’, what appropriate care involved once ‘dying’ had been recognised and the role of the
healthcare professionals in caring for deteriorating patients. Anne implied that at times it was possible to know when patients were going to die and her frustration seemed to spring from her belief that doctors, even when they knew the patient was going to die, would continue invasive treatments. In an interview with Pam, a staff nurse on ward B, she expressed similar concerns and opinions as Anne regarding deteriorating patients:
“I’ve had a couple where I actually challenge the doctor, and I do because I just think it’s absolutely ridiculous to be going on with active treatment, you can see the
patient’s deteriorating. And yes, I know people have a duty of care to sort of sustain life, but it’s when it’s, when do you not play God? When do you say, okay this patient is dying, they’re coming to the end of their life, enough is enough?”
Interview with Pam, senior staff nurse on ward B, 28/04/15 p3
Yet when I spoke to doctors about patients deteriorating, they spoke of the real difficulty in knowing when a patient might deteriorate and die, or respond and recover:
“I think people who die from non-malignant disease can be tricky. So, for instance, people with COPD. Prognosticating in them is really difficult, and there is no tool to do it. Physician assessment is wildly inaccurate, it’s been shown to be wildly
inaccurate in studies. So there’s no reliable way. You know, if someone’s got cancer, you can pretty well judge their prognosis, particularly lung cancer. But people with non-malignant disease is really difficult. So COPD, really difficult. And other
conditions like pulmonary fibrosis, heart failure, again, really difficult because the focus is always very medical, very proactive, very much in terms of treating things, eh and I think we miss a trick with these people sometimes, cause often they are dying, at the end of their life, but we find it very difficult to be precise about things like we are with cancer”.
Interview with Dr Purple, consultant on ward A, 03/03/15 p4
Dr Purple described the difficulty of making accurate prognoses at end-of-life yet he also implied that often he felt their approach was too medical. It appeared that in these kinds
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of situation, there could be both a lack of awareness of the values held by fellow staff, as well as an assumption that other staff members’ values would be the same as the
participant’s. This has been described as both values blindness and values myopia40. In
Anne’s account, she seemed to assume that both she and the doctors could be sure when a patient was dying, yet Dr Purple was not so certain about this. I observed that when conflicting values went unrecognised staff could feel ignored and as though their perspective was undervalued. It seemed that explicit recognition of conflicting values might facilitate team discussion and deliberation about patient care. Indeed this was illustrated to some extent by the following account from Lisa, a staff nurse on ward B. For while Susan and Anne felt able to voice their different perspectives and concerns to doctors, I found that other staff felt less confident to do so. Lisa described her
perspective on how she felt when she disagreed with a doctor’s perspective:
L: I think as well, just being able to say to doctors, sort of now being able to a little bit sort of kind of say, oh why are we still doing this? But I don’t think I’d have the guts to say it to a consultant yet, who would be the one who would make the decision. But we say it to the junior doctors now, but I then wouldn’t say it to the consultant, well I don’t think we’re doing the right thing. But again I don’t know if that comes with experience, or if it’s just not something nurses would say, but then I think we’re the ones who are in and out [of the patient’s room] for a longer stretch of time, that our opinion [I: what stops you saying it to the consultant?]. Cause they’re scary, and they’re consultants. I’m just a nurse. They’re a consultant. So it’s kind of like, oh they know best, they know best in everything.
I: What do you think they might do?
L: I don’t know. Cause like especially on this ward, our consultants are all really lovely. But I just think that my opinion wouldn’t be that valid, cos they’re like a consultant, and I shouldn’t like say anything, I should just do what I’m told to do [L laughs].
Interview with Lisa, Staff Nurse on Ward B, 21/11/14 p10-11
Lisa was a relatively junior nurse on the ward and though she got on well with the consultants she lacked the confidence to share her opinion with them. Lisa perceived a hierarchy of perspectives on the ward, with the opinions of consultants of greatest importance, while hers were much less important. This implicit hierarchy stopped her from sharing her concerns with consultants perhaps for fear of looking stupid or
40 Fulford refers to this as ‘values myopia’, which is the idea that people may assume that other people’s values
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impertinent. I asked Lisa about what had happened when she had shared her concerns about patients with the junior doctors on the ward:
“They’re actually generally really understanding, they, like cause we’re the ones who are in and out of, if they’re in a side room, in and out all the time. And we’re seeing how distressing doing hourly obs can be for the patient, and then how for us it’s a losing battle, cos we’re doing them but then you don’t want us to do anything with the obs, so why should I disturb that patient? I want to go in and see that patient, but I don’t necessarily want to make them uncomfortable, and bother them. So they [junior doctors] generally are really understanding and they sort of take a step back and reassess the situation and kind of reflect on what we are doing and what the plan is”.
Interview with Lisa, Staff Nurse on Ward B, 21/11/14, p3
Though Lisa did not mention values her language implied them. She felt that when a patient was dying they should not continue to perform regular observations which were not being acted upon and could be uncomfortable for the patient. The doctors may well have agreed with her or they may have believed that the patient was not dying and did require ongoing observations. Either way, Lisa explained that by raising her concern the doctors stopped to consider her perspective and their management of the situation afresh. When Lisa spoke her concerns out loud to her medical colleagues it was no longer just a matter for her but something for them to consider together as a team. However, I also observed situations when for varied reasons, staff members did not speak with each other to share information and perspectives.
Dr Pearl [junior doctor] told me about a patient who had been transferred up to the ward in the early hours of the morning. He had acute leukaemia and he had been receiving chemotherapy. He had been very unwell and the consultant, Dr Cobalt, had spoken to the patient and his family. Dr Pearl said that she had been on a ward round with another consultant when Dr Cobalt went to speak to them. She said she wished he had asked her to go with him because later on she had to go in and introduce herself and ask how they were not really knowing what had been said. Dr Pearl said the patient’s wife was really upset because he was agitated and in pain and nothing had been sorted out. Dr Pearl explained to me that the management plan was to give him platelets, which she felt were useless given that he was dying. Dr Pearl said she reviewed the patient and told his wife she would try and get him more comfortable. She called Dr Cobalt and he said he was happy for her to prescribe prn drugs for end-of-life care. However, Dr Pearl said that they gave the patient medication for his symptoms and then about half an hour later he died. She felt bad that he had died so quickly, but was happy that his family had seen him settled before he died. She said that she felt there were loads of gaps in
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Field Notes Ward A, 19/08/14 p2
Dr Pearl and Dr Cobalt reviewed the same patient and family but appeared to interpret the situation differently such that they formed very different management plans. Dr Cobalt was keen to treat the patient’s low platelet count, while Dr Pearl felt he was dying and wanted to focus on keeping him comfortable. Because they had not reviewed him together there had been no opportunity to discuss their varied opinions and later on Dr Pearl explained that she felt that this had delayed the initiation of good symptom control. Furthermore she felt that it made it much harder for her to establish a rapport with the patient and family when she didn’t know what they had been told.
Just as Dr Cobalt and Dr Pearl interpreted the above situation differently, I observed that staff often held differing opinions about when to use the term ‘dying’. On the wards patients described as ‘dying’ were those who were felt by staff to be deteriorating due to conditions no longer reversible or treatable, which would inevitably lead to their death. Yet the way staff members interpreted patients’ clinical conditions varied. One of the junior doctors on ward B, Dr Coral, told me about Emily Brown, a patient who she thought was dying:
Dr Coral explained that she was a very frail, elderly lady who was dying of frailty, but had deteriorated overnight and was now dying of something.
Field Notes Ward B, 10/04/15 p1
A few minutes later I observed her conversation with another junior doctor who had just reviewed Emily:
Dr Coral asked him what he thought. Dr Ivory had written his impression in the notes and I listened as he explained that Emily was septic, had acute kidney injury, faecal impaction and overflow diarrhoea, low phosphate and low magnesium levels. But he said that mostly she was just incredibly frail……… I asked Dr Ivory if he thought Emily was dying. He replied that she was not yet dying, but was right on the edge. I noticed that Dr Coral frowned at this as if in disagreement. She then
commented that she had thought Emily was dying yesterday.
Field Notes Ward B, 10/04/15 p1
Dr Ivory listed many serious medical problems but from his perspective these did not equate with ‘dying’, whereas Dr Coral had interpreted the patient’s gradual
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arrived to do his ward round and he reviewed Emily Brown. Afterwards I made the following field notes:
Emily responded when Dr Yellow said hello and said no, when he asked if she had any pain. But she then started groaning and mumbling and seemed to be delirious. After examining her and explaining that she had a very severe chest infection, Dr Yellow left the bay and we followed. Outside the bay he commented that she was clearly dying.He read through her notes again and commented that she had chest sepsis and evidence of multi-organ failure……….
Dr Yellow advised that they continue the IV fluids and antibiotics until the afternoon, so that she had had 24 hours of treatment. He felt it was highly likely she would deteriorate and then they would change their management to palliate her symptoms and focus on keeping her comfortable. In the meantime, if her cannula came out he said not to replace it. He prescribed some Midazolam for her distress and agreed that she should be moved to a side room.
Field Notes Ward B, 10/14/15 p2
When Dr Yellow described Emily as dying his management strategy for her care
changed. His words created a new reality which provided a new direction for treatment. The focus became keeping her comfortable and active treatments were gradually
withdrawn. A few days later I saw Dr Ivory again and I asked what had happened to Emily Brown:
Dr Ivory told me that he had reviewed her again early in the evening. He said she was much worse, and was unresponsive, so they palliated her. I asked him if he thought she was dying when he saw her in the evening. Dr Ivory said yes, and that it was obvious then because she was unconscious.
Field Notes Ward B, 13/04/15 p2
Dr Ivory seemed reluctant to label Emily as ‘dying’ until she was unconscious and it was beyond all clinical doubt that she would indeed die. Though clinical terms like ‘dying’ or ‘deteriorating’ can appear to be objective descriptions of patients, I observed that these descriptions were staff members’ interpretations of reality. In this sense, making meaning is a subjective process through which people use their experiences, feelings, understanding, language and interactions with others to form meaning about the world around them.
183 8.5 Conclusion
In this chapter I have considered the role and work of language and meaning in communication during end-of-life care. From the data it appears that language has many roles: first, it works to make explicit the details of a situation and help to formulate the perspectives of participants as they speak their thoughts and feelings out loud. Second, by expressing their thoughts, opinions and views out loud, language can place matters in the ‘public space’ where they can be openly reflected upon by participants. This shared language can work to establish relationships and build rapport between participants. Third, language provides a medium through which participants express their perspectives and understandings about situations. While participants often agreed on the processes and practices of care on the ward, when conflicts of opinion occurred, another role of language could be seen, that is, to express participants’ values and moral concerns. Yet even when seemingly appropriate language was used misunderstandings could still occur. In order to investigate this further, I considered how meanings are