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Table 4 Themes, sub-themes and representative quotations from qualitative analysis

From: Palliative care in the emergency department as seen by providers and users: a qualitative study

Themes
Sub-themes Representative quotations
Shared priorities in ED among professionals and patients
 Patients’ priority is being relieved from their physical suffering “We don’t see much of the patient when he/she isn’t feeling well” (physician). “If you ease at least some of the pain you can take away, they don’t ask you information...” (physician)
“The patient is in pain, so we administer an analgesic, or morphine...” (nursing assistant)
“I can’t really tell you they asked me any questions understand the problem, since, I was confused but I heard the nurse talking and asking about my problems. I practically had a foot in the grave … [omitted] I can’t explain. I felt I was going to die!” (patient)
“They didn’t give me information about my problems, but really I didn’t ask them anything. This is because I understood my trouble even before the doctors.” (patient)
“The assistance I received was great; I went in gasping for air and went out breathing!!” (patient)
 Being emphatic/ being perceived as emphatic “We struggle to put up a barrier between us and the patients. We experience death in the emergency room with multiple trauma. I don’t know if it’s just my personal opinion, but I have less issues dealing with a young patient with multiple trauma then with an oncological patient.” (nurse)
“[Patients] are people to whom I really don’t know what to say. I think: ‘I really don’t know what to tell you, and actually I just feel better if I didn’t see you!’ Not to mention when they ask questions... like “will I get better?” When will I get better? What happened to me?’ ‘Why don’t you ask my colleague, it’s better...!” (nurse).
“Sometimes we shield ourselves behind the fact we’re busy carrying out our work [omitted] trying to avoid that aspect, for many reasons; hoping the patient will get transferred as soon as a free bed comes available [omitted], so we get rid of the problem, for many reasons, because we’re uncomfortable, we don’t know how to act...”. (nurse)
“I felt everything was going well, that I was already under their protection!” (patient)
“They have acted kindly and professionally. [omitted] Anyway there were four or five doctors around my wife’s bedside, so I guess I should at least be happy because they were following her” (relative)
The information provided by professionals and that desired by relatives
 Relatives’ expectations towards ED professionals “... And when you hear them say “why aren’t you doing anything? Isn’t there anything left to do? You’ve got to do something! [omitted]There is this perception that no medical action is being undertaken to care for the patient who is suffering, because they cannot understand how far medicine can go and where it takes something else” (physician)
“When someone goes to the ED, he/she is convinced that a doctor could tell him/her: “You have a problem and I’ll heal you! Unfortunately, this is not always possible. But we, and the patients want to be cared for immediately, and want to be sure of healing. … Unfortunately, this is not possible in life…” (relative)
 Why do relatives repeatedly ask for the same information? “… Questions that make you understand that they really weren’t expecting it, and that they were absolutely unaware of the stage of the disease… or simply they need to ask questions hoping to hear you say that it’s not true, so you really don’t know what to reply...” (nurse)
“Many times the fact they say “we don’t have any information”, is not because they don’t have information, rather that they don’t not want to know the whole story, or they don’t want to remember it” (physician)
“We didn’t ask anything… [omitted] The moment we left home we felt it would be a last trip, so many times we didn’t want to ask to avoid bothering anyone…[omitted] “We were already prepared to this moment …so we didn’t need to ask …” (relative)
 Waits time before being informed/ receiving information “You have to repeatedly ask them [the physicians] 1,2, 3, 4 times … “Have you spoken with a relative?’ They are always so caught up in the scientific aspect alone...” (nurse)
“[the patient] came in and was really in bad shape, and I saw that we didn’t wait long. When we arrived he was already inside [omitted] They told us ‘a doctor come and call you now’, and indeed a doctor. Came soon after” (relative)
“In a second moment when [patient] became conscious they explained to us the first types of treatments that they had administered, and that they would have brought him up into the ward [omitted]. Not immediately, but as soon as he got things together… (relative)
Perception of environment and time
Spaces within the ED “The Emergency Room, per se, is perhaps the least appropriate place... to approach a topic like this in a complete manner. I’ve heard of that maybe the Short-stay Observation Unit offers spaces with better characteristics... at least on the layout they’ve got what are listed as rooms –although you really can’t call them ‘rooms’– but which in fact are dedicated to these types of patients... You’ve got a different, more direct contact with the family member.” (nurse). “You’ve got a little more time to dedicate the patient [omitted] and speak to him/her for a couple of minutes...” (nurse)
“I believe it’s matter of dignity being able to deal in a certain way with certain people. [omitted] if you have a place that is somewhat more intimate, it’s better.” (nursing assistant)
“In the Emergency Room, the only privacy patients have is provided by a curtain [omitted], while the patient’s suffering and has all the problems of the world –supposing he/she is even conscious enough to understand what’s going on-, in my opinion it’s a situation a human being does not deserve. (nurse)
“Even when you have to give bad news. Where is that given? I feel bad for them… in the hallway! If they give me such a news I’d fall on the floor! Where should I put them? Where should I take them? To the relax room, where we go to have a cup of coffee, which in most cases where is likely have someone walk-in laughing...” (nurse)
“The family members find themselves at the end of a painful path, [omitted] they’re quite exhausted and proven, therefore they need some privacy...” (nursing assistant)
Time devoted by ED professionals to patients and relatives “In my opinion we don’t give the patient the time he/she deserves [omitted] what I mean there’s a risk that… if one puts themselves in the shoes of this type of patient, that patients feel themselves abandoned!” (nurse)
“You’re there busy, feeling your patient’s abdomen, interacting with your colleagues, and meanwhile the family comes up to you for information … You’re doing three things at once!” (physician)
“They immediately put on the oxygen mask so he immediately received all the care needed!” (relative)
“You are welcomed, everyone takes care of you dance by you to do anything they can. And this it is what I believe to be ‘Quality of care’, it’s not just the treatment but also the way you are treated as a person. Because if you just administer medication and then you leave the patient there… They often come there and stay with you, sometimes pampering you, and it really means a lot to me!” (patient)
Availability of medical devices “Sometimes that happened to go out in the oncology ward to get some medication and not even know what was inside... (nurse)
“The bed is uncomfortable. The stretchers are uncomfortable. Patients have this little stretcher... But then if they need to turn around they can’t because it’s painful. And maybe they might even have sores...” (nurse)
“Actually [my wife] was on the stretcher from 8 o’clock to 3.30 in the afternoon. And with the problems that she has and back pain and sore legs, she could not bear it any longer …” (relative)
Limitations and barriers to the continuity of care
Interprofessional communication outside the ED “Inside the ED you don’t really diagnose, so you don’t even know the underlying information process...” (nurse)
“We work h24 well and oncologists much less, and you don’t even know what has been said to the family, or to the patient. Many times the patient comes in, and 10 min later we’re told ‘the patient doesn’t know anything’” (physician)
“Sometimes we received a call from the oncologist who tells us ‘there’s a patient coming in from home’, and most of the cases they don’t bring any medical records, and the oncologist doesn’t provide us with any information” (physician)
“Many times we say: [the patient] he’s going to be back tomorrow! Because if he’s not part of a network, or if he has not a support that helps him outside, after the acute episode, he’ll return... (physician)
“We work by pre-established patterns…But [omitted] the patient must be considered as a whole, and not just as a part alone” (nurse)
“The problem is that’s the kinds of patients are changing. We have to change our way of working, approaching patients, of setting priorities, but there isn’t anything [in the system] that changes and allows us to do this in a simpler way” (nurse)
“…Pathways that in my opinion are not always correct. I mean these patients arrive from home and are in pain… the burden of a lifetime. They arrive to the oncology day hospital and they stay there all day, being promised that they will be found a bed. Then they are taken to the Emergency Department and they spend a whole afternoon waiting for a bed, and then they’re taken to the Short Stay Observation or in the ward... [omitted] And patients go through all this to achieve… what? In my opinion these pathways are not always appropriate” (nurse)
“And what about patients from facilities with multiple comorbidities? You can’t find a thing on what the facility and the doctor decided for the patient! What are the family members waiting on??” (physician)
“They have little knowledge of the person … as soon as they know about your problems… there isn’t much that they can do …” (patient)
Interprofessional communication inside the ED “The family members come to speak with the doctors... They go there and you really don’t know what they were told [omitted] so then not even we can have a contact with the family members. You are afraid to go into the room and tell them something different! [omitted] What’s missing is the contact. Maybe even our fault. But what’s missing is the communication between nurses and physicians. This approach is currently lacking” (nurse)
“When doctors change shifts and update their colleagues, it’s not that they come over to you and ask you ‘what do you think about patient?’ ‘Is he in pain?’ Isn’t he in pain? (nurse)
“They [the doctors] come and tell us what they decided, but there should be more interaction with nurses to do things well.”(nurse)
“It’s not even easy for them, because they don’t know the persons…” (relative)
The contrasting interpretations of giving and receiving PC
Management of pain and other physical symptoms “it’s like being in a Third World country. Especially for us, as we don’t even have any instructions to carry forth. It kind of activate instinct...” (physician) “with your own personal experience” (physician)
“The first issue is the pain, because after a first attempt –which is mostly based on FANS or paracetamol or when we exaggerate tramadol–using more potent and effective medication takes repeated requests to physicians” (nurse)
“[the doctors] are afraid... they administer one cc of morphine at a time...” (nurse) “I believe their fear is linked to the lack of competence” (nurse)
“In order to set up a CPAP [omitted] you need the patient’s collaboration first of all; otherwise you need to sedate the patient. And in this place we don’t have sedation [omitted] Instead of sedating them we tie them... [omitted] Poor patients, let’s just sedate them!” (nurse)
“What can you expect… they’ve administered some painkiller…[omitted] They didn’t do things sloppily… because they don’t know the person…” (patient)
“I saw that they really put much effort in dealing with this problem… [omitted] I did notice that they are there when there is a need …” (relative)
Training needs “We’re in 4, 5 different physicians, each being used to manage pain treatment in their own way. Perhaps, it would be better if there were a more standardized approach...” (physician)
“I feel a bit inadequate... [omitted]. I follow my instinct, I mean when I’m in front of the patient I look at the way he/she reacts, I try to avoid saying nonsense.. But I really feel I am not prepared...” (nursing assistant)
“We lack the training on the relational aspect more than on the practical tasks. Because after so long we know how to manage the patient. But we don’t know how to manage the relationship, to what extent we can engage with them... And at what point should someone else intervene?” (nursing assistant)
“We only have our human nature to support them [omitted] it’s the situation where one human being is telling another that the person they love is about to leave us and there is nothing you can do about that [omitted] We communicate directly that the person has passed... We don’t prepare them to the event” (physician)
“Training on the multidisciplinary aspects of oncological patient, that means enteral nutrition as well since these cases occurs up frequently” (nurse)
“They have all been great, they did what they could, but it’s clear that if you have a severe problem they’ll send you to the ward” (patient)
“They worked well…nobody can fight against death…” (relative)