Three major themes and three minor themes emerged from the interviews and are presented in Fig. 1. Symptom control was at the forefront of the major topics. Particularly in the physicians' statements, symptom control emerged as the dominant topic when unsatisfactory dying processes were described (key for the quotations: PH = physician, N = nurse, first number = number of the interview, second number = paragraph within the interview). In hospices, patients are usually referred to as guests, this is only mentioned in verbatim quotes.

Physicians speak of an unsatisfactory course of death when symptoms cannot be controlled or can only be controlled deficiently. Often, symptoms were mentioned that can be sorted according to the classic categories of hospice work:

A-1: Physical suffering: Here, nausea, shortness of breath and pain are mentioned as symptoms that cannot always be satisfactorily alleviated.

A-2: Psychological suffering: Not infrequently there are patients who.

"cannot develop this calmness at the end of their lives, which the companions can often manage so well, right? The ones who decompensate psychologically at the end, who develop psychiatric symptoms. Who are also negative, aggressive, who are simply, who are people you can't find access to. (N 12, 83)

A-3: Social suffering: Reticence, fear of rejection or fear of loneliness make the dying process more difficult. Patients are also burdened by the idea that their loved ones could suffer too much. Patients feel abandoned, superfluous, pushed away or to be a cost factor.

A-4: Spiritual suffering: The fear of being abandoned by God or being punished is mentioned, as well as "life guilt" (PH 9, 49) that burdens the patient.

Physicians speak of an unsatisfactory course of death even when staff and relatives are burdened, for example when someone dies under a "heavy symptom load" (PH 6, 77). A nurse comments: "It is difficult to see someone suffocate when the medication is no longer enough" (N 17, 22). This also applies to imposing symptoms such as bleeding, large wounds, vomiting blood after a fall or restlessness or a tendency to run away in the preterminal phase: A patient in the.

"pre-terminal phase, actually he was bedridden (...) got up, fell, head laceration, a lot of blood, restlessness, and that is, of course, quite unpleasant for everyone involved. And especially when, for example, relatives are present. (...) But, of course, it also puts a strain on the nursing staff, who are of course also directly onsite, right?" (PH 4, 36)

"Personality changes due to brain metastases" (PH 11, 76), for example, are distressing for relatives. This also applies to seizures or severe pain, which is why they often request sedation.

Physicians speak of an unsatisfactory death when symptom control remains deficient due to conflicting goals. For example, pain is not completely relieved in order to reduce the patient's fatigue or to maintain consciousness. A physician sees.

"the need to preserve the patient's consciousness as much as possible when administering medication but is willing to accept clouding of consciousness to relieve agitation." (PH 8, 28))

Especially palliative sedation does have, as another physician points out, desirable consequences for the professional environment, namely when.

"the patients are simply restless, where you then also have to walk this tightrope between sedation, but still somehow retain their personal rights, that is, their dignity. None of us should be sedated simply because of restlessness. After all, the dignity of care must somehow be preserved." (PH 12, 140)

The conflict between consciousness and self-determination on the one hand and their impairment by pain medication on the other hand can be "solved" by gradually adjusting the appropriate dose. This deliberation takes place even in the extreme situation in which a patient has smeared the environment with his excrement:

"We had a patient who really smeared the room with her excrement, daily. And you have to keep the nursing staff in mind. And to consider this tightrope walk, which restlessness do you allow, which not?" (PH 6, 74)

The challenge also for nurses is to keep freedom from symptoms and pain in balance with the patient's consciousness. It is perceived as difficult when the patient's wishes can no longer be ascertained. One nurse tried to gradually combine autonomy and patient care by giving patients the experience of having better life quality through pain medication:

"And then they try it out and realize they then feel much better, because the quality of life then increases and you are still present, etc." (N 7, 15)

Patients are often willing to endure pain in order to remain autonomous. Unsatisfactory situations arise when pain medication is refused by patients despite insistent and repeated recommendations from staff, partly out of fear of loss of autonomy or, related to this, fear of loss of consciousness, and in rare cases also the desire to feel pain for spiritual reasons. One nurse notes that it is difficult when patients.

"bear and endure their pain for so long, when there are such good remedies that could make it easier for them, but they just want to endure the pain at that moment, want to or have to, I don't know." (N 16, 27)

From the employees' point of view, patients then make it unnecessarily difficult for themselves and the employees feel helpless. Nevertheless, they want to maintain the patient's consciousness so that they can take the patient's wishes into account. A nurse expresses the following position: If patients refuse symptom treatment because they want to feel their pain, she feels "helpless" (N 19, 37), but she respects the autonomy of the person concerned.

It can be stressful for staff if patients or relatives do not accept the administration of pain medication. A patient does not want to take morphine, but has attacks of breathlessness, leading to unnecessarily difficult situations. (N 7, 81) A nurse remarks:

"So if someone is very restless and wants to get up again and again and falls down again and falls down again, then maybe you try to get him a bit calmer with medication, but sometimes the relatives don't want that. The patient may not want that and then we really have to live with the fact that he falls down four times a day. And that's a bit of a problem, you can't give them anything, no, they don't want to. And then, bang, he's lying on the floor again. A wound here, a wound there. That's sometimes difficult with people who are confused and have a tendency to run away." (N 17, 57)

But there is also an opposing tendency. One physician comments:

"If you reduce opiates, it's actually often the case that at the end of life, metabolic processes tend to lead to a relative overdose, and you then have to gradually reduce a little. This is sometimes difficult to discuss with patients because they are afraid that something will be taken away from them. And they don't see the benefit of less tiredness or less nausea or less constipation." (PH 2, 18)

Sometimes patients also want a higher dosage of painkillers, even though their pain is already sufficiently controlled, simply to cloud their consciousness.

Respect for patients' autonomy must respond to very different trajectories, which poses a particular challenge for nurses: Some patients simply wish to be able to sleep and "cross over", some wish to remain "present" and be able to "witness" (N 11, 15) and "reflect" on their dying. (N 19, 18) The nurse who expressed this would argue more for presence, admittedly not in a way that would require someone to "then endure pain". (N 14, 23).

A nurse tries to educate patients who want to endure their pain about symptom control options, but ultimately accepts the person's wish. (N 22, 41) In addition, there is a tendency to "dampen down" agitation (N 7, 50), although it is not always clear what the cause of the agitation is. Therefore, one would have to look more closely at what is important for each individual at that moment. There is a danger that "routines" (N 19, 11) creep in, which do not do justice to the patient or his individual well-being. Pain and symptom control is named by one nurse as a prerequisite for a calm and thus good death. At the same time, she is aware that it is not simply a matter of "subduing" agitation (N 5, 22), but of looking more closely at where the patient's restlessness specifically comes from and how it should be treated.

Behind some patients' desire to endure pain, there appears to be a certain notion of autonomy and consciousness. In individual cases, an autonomy overriding practice seems to be indicated, although the extent of this violation to the patient’s autonomy remains unclear or extremely small. One physician notes that successful symptom and pain control is not always easy, for example when a patient refuses to take painkillers:

"If she had taken her painkillers, she would have been pain-free. But because of her psyche structure, you had to talk to her every day with the tongues of angels. Until she was so somnolent at the end that they could give her a Perfusor, then there was good symptom control, then she also died peacefully, peacefully, so she died quietly." (PH 14, 19)

Here, the patient's wishes were considered for a long time, but were overruled in the end.

Another nurse remarks:

"Or if someone, well, can no longer assess his situation at all, then I also inject him with something if he, that is, if I have the feeling that it is necessary. I mean, of course, I also have an on-demand medication here. I don't just do something out of nothing or anything like that, right? But there is a situation where you can't always ask someone who has shortness of breath and is already on the way: May I inject you with morphine now? I always tell them what I'm doing. Right? I'll go now and get morphine, or: I'll be right back with you. I see you're having shortness of breath; I'll inject you now, okay? That's how I would do it." (N 3, 44)

Here it remains unclear whether this respects the patient's autonomy or not.

In another case, a patient wanted less medication, which was not granted, leading to her death from an overdose. In the case of prefinal agitation, medication is given as needed to help patients achieve a state of calm. The statement by a nurse leaves the question open of whether the administration of medication to calm patients overrides their autonomy or not:

Apparently restlessness contradicts the idea of a good dying process, as a nurse comments: "That is also a symptom, this restlessness, and often we know with this restlessness that it is a prefinal restlessness, and then we give what they need, and then they become peaceful right away. And we’re generous with this. So, if we now give them something and they aren’t calm after ten minutes, then we directly give something again. So, we are allowed to very quickly give them what they need again." (N 26, 25)

Due to the risk of falling, one patient was sedated because there was not enough staff available at night to monitor the patient. A nurse remarks:

"I don't know, the ALS patient we had the other day, going back to the issue of dilemmas, which ’I still see now, who, so to speak, gets multiple midazolam tranquilizers because for us’, or because we don’t allow her to, or we know that she is restless because she has to go to the toilet and she is incontinent and she feels the need to urinate and has to go to the toilet, but it’s just not possible - to somehow take this urge to urinate away because we can’t take her out alone during the night shift. That’s why she is sedated. That’s difficult for both sides, of course, because as a caretaker, you don’t want to ruin your back doing that, but at the same time you can’t be responsible for not fulfilling a patient’s need by sedating them, which is very tricky.” (N 7, 36)

Even in situations in which the possibility of self-endangerment is seen, a practice that overrides patient autonomy likely to occur.

"These are situations that we don’t cope well with. We have to manage it somehow, and then it’s usually just a case of giving midazolam, not us, the physicians. And that there’s no other way because it’s no longer controllable. Or someone who wants to endanger themselves. These are of course limits where you say: We won’t allow that here." (N 18, 30)

In the opinion of a nurse, the common practice is not questioned enough,

"there is always the medication that is used – it hardly differs. And we give that then. Because that's what has been ordered. In case of nausea, we give them the same thing, and whether someone then reacts to it in such a way that he sleeps for twelve hours, and the other person, however, only sleeps for two hours, the main thing is that the nausea is eliminated." (N 14, 44)

Conflicts arise when relatives demand therapies that physicians refuse because they are not indicated. For example, as one physician reported,

"The wife here called the emergency physician when her husband had the slightest problem, which is completely contrary to the hospice idea, and she demanded treatments. ... I then explained why the treatment was useless. I think it was about infusion therapy. And I explained why it wasn’t good. And she said: 'Yes, I understand. But I know it’s helping him.’ We didn’t come to a consensus." (PH 3, 43)

The same physician notes that he was once "very harshly accused" of "letting his father die of thirst and torturing him and sending him to his death in a very unfortunate way.” (PH 3, 43) The physician.

"was ultimately only able to resolve the situation by hanging up an infusion and letting it drip so slowly that it ultimately had no effect at all. But of course I failed in my arguments. I didn’t get through to them. So that wasn’t good." (PH 3, 57)

Another physician reported that relatives even wanted to force therapy:

"And relatives would always stand in the doorway in front of the nurse and threatened to call the police and use physical violence. That was a troubled dying process." (PH 4, 58)

In another case, relatives demand sedation for a patient with only mild symptoms. The physician refuse and is met with hostility by the relatives. In some cases, it is reported that relatives give the patient food, even though this s harmful to him.

Occasionally, relatives do not want therapy, even though it is considered indicated by the physicians:

"I think a medication was given that they didn't want to be given. It could have been something like that, yes. And then they called the police, yes. Or because they thought we were torturing the residents." (N 2, 65)

We also observed conflicts between patients and relatives, especially concerning potential therapies. One woman.

"every ten minutes actually accused the nurses of killing her husband. And the man wanted painkillers. So that was clearly not what the patient wanted. And then, the wife then called the emergency number several times. So, it was a difficult situation. It couldn't be resolved." (N 18, 37)

Sometimes relatives use violence if they have been treated badly all their lives. Conflicts within a family can increase pain and anxiety in patients, as physicians have repeatedly stated.

Not dying well means completely repressing an illness, denying it:

"And patients who you can tell are not ready to die. That somehow, as I said before, they haven't finished yet. Still holding on to something. I just find that, that's difficult." (N 27, 61)

Some patients completely suppress their suffering and dying:

"Or now recently we had a patient who simply didn't let anything be done to her. Nothing at all. With a large wound. And who was always convinced that if you don't do anything, you negate its existence, so to speak. If you don't do anything, then there is nothing. And who also died with this denial." (PH 12, 43)

Other patients want therapy because they still have hope and are disappointed when nothing more is done. Staff feel helpless in such situations.

According to a nursing director, whether a death is peaceful or not is related to the issue of processing or repressing an illness: If the illness is pushed away until the end, this is "difficult to bear" for all involved, thus especially for the nursing staff. (N 24, 31)

When the conscious confrontation with the illness or the acceptance of the illness does not take place, it is manifested as restlessness:

"There were already many cases who really did not want to talk about their illness, neither with the family, nor with anyone, and who were then simply extremely restless and no longer responsive, where one then tried to really give something sedating and painkillers and they needed much higher doses than with other patients to accompany the symptoms." (N 28, 49)

However, there is also the opposite attitude among staff, who show understanding for patients to not want to accept their death:

"And I therefore also accept when there are guests here, because there are also guests who do not want to accept it until the end. And that makes me angry when they have to. (...) But I would say that most of them cannot. And that something is interpreted into it. That somehow they should. They're supposed to be able to. Because they are here." (N 9, 34)

A patient is shielded by relatives who give her hope, and the staff lose access to her.

The course of death is perceived as unsatisfactory if it takes too long and is agonizing or comes surprisingly quickly. Whether the course of death was good or bad depends on the point of view and is judged by the feeling of whether it was right or appropriate, as one nurse explains:

"For me, it is quite often the case that I somehow decide based on my feelings. I can't say, for example, that we had a woman who quite suddenly, quite unexpectedly for all of us, just died. And now you can say, oh, that was good for her, because she had such terrible wounds, and she didn't have to, well, that was somehow good. But for me it doesn't feel so good. So, I don't know. And then there are other guests who are really prefinal and you have the feeling that everything drags on insanely long and yet I have the feeling that in the end it somehow fit, yes. (...) It must also be right from the feeling, and it must also, you must also feel that it was somehow right for the guest." (N 2, 90)

Staff feel helpless in such situations, they seem to have failed:

"I've experienced a situation like that. It happened so quickly, the on-demand medication couldn't take effect that quickly, even though I administered it immediately. In that situation, the patient choked on his blood, and he was fully conscious, he was completely aware of what was happening." (N 29, 18)

This can also be difficult for relatives. It is also perceived as unsatisfactory when a patient is found dead because nothing could be done.

"One thing is when we find someone dead. It's always a bit like, we weren't there. And it's a recurring theme, even in the handover. Yes, then we found him dead, I say, okay, then he died alone. --- is perceived as a failure." (PH 12, 35)

An unsatisfactory course of death is described when a patient felt deceived about her state of health, i.e. lied to, and died "disappointed, bitterly disappointed". (PH 3, 21) A case is also mentioned in which a patient deceived the physicians by double-crossing them with opioids, thereby destroying the trust in their relationship.

Sometimes patients deny their illness until the end so that physicians are unable to communicate with them.

"But of course there are many, sometimes even the young patients, who deny that they are ill, even completely deny they are dying. I've seen that very often, and it's sometimes very, very difficult for us to deal with, because then it's often the relatives who have the problem, who have never talked about it and often suppress the illness. And it's only at the end that they are blindsided by how badly their relative is perhaps doing." (PH 7, 37)