Demographics
The study included 29 participants. Qualitative saturation was recognized after the first 19 interviews; however, the study continued in order to ensure maximum variation. The interviews were conducted with 19 patients who had suffered from medical, surgical or neurological conditions, 3 patients with a Covid infection requiring mechanical ventilation, and 7 relatives. Table 1 shows the demographic data.
Findings
The interview data are rich and go beyond the scope of a single publication. The focus in this paper is on categories that could evoke a notion of coercion or risk of coercion as expressed by the patients themselves or alternatively their relatives. The perspective is that of the patients or their relatives and not that of the health professionals. The thematic analysis identified five themes that highlight the perception of patients and relatives regarding the different possible forms of coercion in the ICUs and introduce possible improvements in the practice.
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1.
Memory issues/gaps
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2.
Interviewees’ experiences of restricting measures and coercive treatment
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3.
Patients’ negative perception of situational and relational dependency with the risk of informal coercion
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4.
Patients’ perceptions of good care in a context of perceived dependency
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5.
Progression from perception of coercion and dependency to respect for the person
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1.
Memory issues/gaps
Most of the patients were in a comatose state, a few because of their illness, but most often they were put into an artificial coma or deep sedation within the care process in the ICU. One of our interviewees did not even know she was in the hospital. She remembers becoming aware that she did not know where she was:
[…] where am I? I couldn't understand it at all, where they then told me I was in the hospital. (CMI 16).
The absence of memories is itself a source of insecurity for patients who gradually discover part of their history through their entourage. This was also the case for another interviewee, who was only able to make connections six months after his hospitalisation as to what had happened during his stay at that time:
And then [six months later, assessment appointment] I discovered things that I didn't remember or maybe I wasn't aware of at the time. I was surprised to learn that. (CMI 01).
There is an intertwining of subjectivity and objectivity in the reported experiences. As a result, what patients remembered about their stay in the ICU is incomplete, or for some of them mixed up with dreams, hallucinations and delusions. One patient speaks about the difficulty distinguishing between reality and hallucinations:
I don't know if it was my imagination or if they really tied my arms… So I don't know if it's my imagination or if it was/it really happened. (CMI 17).
When they remember dreams, a restlessness, it is overall a “not so good experience". One of our interviewees clearly says that it was not "easy", quite the opposite:
I was just dreaming…And for me it was always a restlessness and just not necessarily such good experiences… Not easy - yeah, it's just… for me it's been a bit of a pain. (CMI 19).
Patients do, however, report certain experiences, which although possibly related to hallucinations, give rise to a memory of feelings that were real, even several months after hospitalisation. One patient was remembering changes in taste and smell; from today's perspective, he can attribute this to the morphine and tell retrospectively:
And I was on morphine quite heavily. And that gave me all sorts of problems, uhm one, the most severe, was the sense of smell and of taste.
This also led to quite unpleasant experiences, such as nausea and vomiting:
And each time I would take a glass of even (water) down, orange juice, I would be vomiting, because of the strength of the taste (CMI 03).
In summary, we can state that all our interview partners have/had to struggle with memory gaps. This means that reproduction of the details and contexts of their stay in the ICU is anything but trivial for them. Their stories are a mix of what they seem to have experienced themselves, what was added afterwards by relatives or doctors, or feelings/emotions to which they give words retrospectively. Regardless of these limitations, it is important to remember that these memories represent real experiences for the patient.
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2.
Interviewees’ experiences of restricting measures and coercive treatment
We grouped under this theme all patient perceptions of restriction of their freedom of movement (also affecting the freedom to rest and sleep).
Physical restraints are closely related to the loss of freedom of movement because the patient really is tied up, or because medical devices prevent movement.
If you can't move anymore, then it's similar to being tied down. (CMI 08).
One patient uses the metaphor of a prison:
They tied my hands…It's like being in prison. (CMI 09).
One of our interviewees mentions this inability to move and clearly makes the link with the ties and the discomfort of tracheal intubation:
I was strapped down, so I literally couldn't move at all…Because you got tubes and stuff sticking everywhere and/and the tube in my throat was REALLY annoying. (CMI 22).
Another explains how the gloves were such a nuisance that he still felt it in his dreams.
Yes, the gloves were hell. I have long struggled with the fucking gloves in the dreams. They must have haunted me for three dreams. (CMI 20).
Some patients do remember physical restraints in context with their agitation. For instance, this patient was able to understand the situation:
So, in the end they had to tie me up a little bit so they could (-) do their job. (CMI 23)
Relatives feel the vision of their attached relative in an unpleasant way, even if they can understand it.
With white stuff there around the wrist attached to the bed actually. So that she can't pull the tubes out simply… it was like for the crazy people that we have to tie up… I thought to myself but my God, but what a horror she must be suffering so much. (CMI 04, relative)
One relative explains the need for gloves:
Then he panicked so much that he extubated himself…After that, he also got gloves like that. (CMI 20 relative). Another one thought that these measures of physical restraint could be hidden from the family.
That is also a point that I would have liked to know, I was not told … I overheard that by chance. From a nurse who said: Yes, we put gloves on him at night. (CMI 22 relative).
Chemical restraints when mentioned are usually associated with a bad memory. It is difficult to establish coercive treatment from the patient's perspective alone, but it cannot be ruled out.
You're so stuffed with drugs…I didn't like that at all. (CMI 10)
Some patients make the connection afterwards with the medication they received.
I guess due to the fact that they used barbiturate to slow down your brain. (CMI 22),
the morphine, that was also very uncomfortable. (CMI 09).
One of the relatives also comments these measures.
Haldol®, which pretty much sedated him…He only had it at night. (CMI 21 relative)
Combined physical and chemical measures are quite usual, with chemical restraints permitting better acceptance or lightening of physical restraints. Some patients can make the link:
I fought against the gloves so often. But I just couldn't get them off. And um, yeah. Then I always felt the tingling in my head and then I fell asleep. (CMI 20).
Some relatives are aware of this link, too. A daughter was musing about the use of sedative medication despite her mother's refusal:
She [her mother] said she couldn't stand sleeping pills…So why did they have to give it? …because they had to tie her up at some point, I think. (CMI 04 relative)
Psychological restraints cover a very broad spectrum of perceptions. Among them is the feeling of "total pain", which one patient expresses unambiguously:
It's very painful everywhere. And not only the pains of the body, in my psychic mentality, it's not good. (CMI 02).
Another perception is that of being "overruled" or “guilty”:
He [nurse] told me “I have the order to do it, so I'm doing it”. He didn't give me any explanation why he was doing it. …Well, my anger, it even made me feel guilty afterwards, since I apologised. (CMI 05).
Environmental restraints are linked to the machines and the medicalised environment that is unfamiliar and stressful. Most patients describe devices as an obvious cause of restriction.
Machines that with me, all tubes here, the thing under the nose and cables here. (CMI 02);
One is connected to machine… Helpless. (CMI 08)
One interviewee explains how seeing all the tubes can be stressful:
There are tubes everywhere and yes that was … stressful. (CMI 14)
Another one experiences being linked to machines and oxygen as a shock:
In a few days we're like that … That was the shock. (CMI 17)
There are also ICU environmental issues, such as noises and lights, that patients must tolerate with no choice. As it is possible to act on these aspects by improving the environment (e.g. ICU architecture, layout, team behaviours [24]), we have classified as environmental restrictions those which are perceived as restraints when patients complain about them, as in this patient's example:
the noise in the whole building / so in the whole room… That was quite massive. And that had disturbed me … it was very unpleasant. (CMI 14)
Some patients were really bothered by voices coming from other rooms in the ICU, and from other patients:
But there was one patient who was in such a state that he was screaming. And that was painful. So of course, you are full of compassion for the person in question, but at the same time there are moments when you say to yourself but if he could just shut up… On the one hand, compassion and on the other hand, but if he would just shut up! (CMI 01)
Coercive treatment, a treatment against the expressed or shown (natural) will, is used to maintain or restore health under coercion, especially when there is a risk of self-harm or danger to others [16, 23]. In the absence of a medical file, we can only refer to it with caution, for instance through the administration of medication, transfusions against the (natural) will of the patient, as in the examples above of a patient refusing blood transfusion (CMI05) and of a relative not understanding why sleeping pills were given to her Mum who had said she could not stand them. (CMI 04).
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3.
Patients’ negative perception of situational and relational dependency—with the risk of informal coercion
When asked about moments of helplessness, one patient (CMI 22) answers:
Every minute I was there [in the ICU].
Another (CMI 26) concludes:
a feeling of loss of autonomy.
This state of dependence can be experienced negatively by patients through feelings such as helplessness, shame, not being involved in the decision or being misunderstood. Many patients complain about the difficulty of having to bear situational and relational dependency, which can lead to a feeling of loneliness or, on the contrary, aggressiveness:
On one night, I just could not get anyone to come… That was a time when I felt alone, there was nothing I could do. (CMI 03);
I then made myself understood in writing by nodding my head and shaking and striking. Then FINALLY they understood. (CMI 09).
A patient expresses his distress during the whole stay:
It was difficult to find out what they did to you…I got almost zero information about you know why there are 15 tubes stuck into my neck and my arm and everywhere else. Why / what had happened to me during the two weeks that I've been dreaming. Why/why was that happening? (CMI 22)
Such negative narratives in a situation of dependency deserve special attention in that they may be signs of a risk of informal coercion. One of the patients uses the metaphor of war by saying that he had to surrender.
Before, you stood on your own two feet. You did everything on your own. It’s brutal to be so dependent… The worst thing is that you can't talk. You can't communicate… And then you just surrender. (CMI 10)
Even small measures, such as eye drops, can increase the perception of coercion in this situation:
the fact that they would put drops in my eyes and a little bit of cream occasionally, I couldn't see very well. I had/and I really // other than the fact that I (couldn't) see, I was strapped into a bed, it was difficult to um see where I was, … (CMI 22)
Most patients suffer from being medically dependent and powerless because they lose control over the decision-making process:
I was intubated … The woman told me that I wanted to rip the stuff out and so on … All I know is that she was very rude. And that I couldn't articulate myself either. (CMI 18).
Most patients report a sense of frustration with the feeling of dependency:
I was very frustrated because I was getting used to taking these drugs and my psychiatrist [his regular doctor] told me not to stop … so I felt a little powerless. (CMI 06).
It is about feeling powerless, helpless:
I was helpless because I simply could not speak. I could not express myself… Terribly annoying. Terribly effortful in the sense of, yes, it takes effort too. (CMI 11);
for me the worst thing was to be so helpless. It breaks you. (CMI 20).
For some patients the perception of dependency and loss of control is associated with a feeling of fear:
The fear … That was the worst thing for me…But just the fear that someone will hurt me. (CMI 09);
Aggression comes from fear…You are not taken seriously by these people. (CMI 08).
A few patients feel ashamed:
a shameful feeling… I should regain my independence as quickly as possible (CMI13).
Others have a sense of dehumanisation and overruling:
So, what shocked me a bit is, in the ICU, they… when the patient is awake and he's reasonably there, they don't take him seriously. The one doctor, well… this, I really have to say, this is patient-UNWORTHY. (CMI 19)
I am simply no longer perceived as a person. (CMI 24)
Finally, some patients associate dependency and frustration with aspects such as thirst, physiotherapy, noise, sleeplessness: all elements that make them think they are not being taken into consideration.
I almost died of thirst. (CMI 18);
And they'd SPRAY some water in your mouth, but not give you a real drink of water, which only irritated me more. (CMI 22);
They always ignored me, the nurses. They made jokes on the side, and I was lying there so helpless. (CMI 16)
Communication is a major theme in our interviews. Withholding communication or not tailoring information to the patient's level of awareness and understanding can result in a form of informal coercion. Examples are discussed in theme 5, which links this perception of informal coercion to respect for the individual.
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4.
Patients’ perceptions of good care in a context of perceived dependency
Most patients appreciate the benefit of the care and acknowledge being treated with respect. Some patients report positive or even pleasant memories in an attitude of gratitude to the team:
well, they do it very well, it was admirable, and they really did everything they could to avoid making me feel indebted or whatever. (CMI 01);
The nursing staff, etc., motivated persons who fought, who did everything to make us feel comfortable and especially helped us to get out of the situation. (CMI 26).
These good memories reveal a trusting relationship. One patient uses the word confidence:
I had very many interventions that …I could co-decide …but I have to say I am absolutely/I have confidence in our medical system. (CMI13).
Other patients perceive positively the relational dependency with the medical team in an attitude of acceptance of the situation:
Once you get into the feeling, into the knowledge that you are fairly immobilised, you accept it. (CMI 03);
Since it was to promote my own healing …I applied the instructions. I was a good student. (CMI 07).
One patient expresses the link between accepting the situation and understanding it:
But the nurses took great care of me…I was sweating so much…. They said it was normal because the body must process it and flush out all the medication. …That's how they explained it to me. I don't know if that's true. It sounded logical to me. (CMI 20)
In the context of perceived situational and relational dependency as considered in themes 3 and 4, it should be noted that the patients’ negative or positive perceptions are not exclusive. For instance, patients can remember in the same interview that they felt helplessness and shame and that they received good care. The interviewees often remembered those circumstances in detail, which may either worsen (if perceived as difficult) or alleviate (if perceived as good) their experience of ICU and especially a situation of coercion.
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5.
Progression from perception of coercion and dependency to respect for the person
Beyond the perception of liberty-restricting measures and feelings of dependency, patients and relatives share experiences directly related to a sense of respect for them. We report interviewees’ insights of what is respect for a person from their perspective. The interpretation is sometimes complex. For instance, statements may express a feeling of gratitude, while at the same time implying what should have been done and yet was not. The data include important hints at details in the care and surroundings of ICU that may be relevant regarding a possible feeling of coercion which can persist as reminiscence, i.e. an account of a memorable experience that can change a person's sense of identity even weeks or months after hospitalisation.
Many patients have very positive memories of the team with the respect to their situation and their person:
Infinite gratitude for the surgeon and the doctors who took care of me at that time, not to mention all the nursing staff, nurses. I would go so far as to say the cleaning staff who are always very pleasant. (CMI 01).
They express gratitude for the care they received in their critical situation and emphasise the professionalism of the team:
Gratitude… and I experienced a lot of beautiful humans, interpersonal beauty. (CMI 13);
And I've never had such good care…I felt I was in good hands. (CMI 18).
Most patients appreciate being reassured, a feeling that they link to a clinical team acting with empathy:
There is a lot of empathy…I think if you need something you can disturb them without it creating a problem. (CMI 17);
you don’t find this sort of team spirit […] outside. (CMI 03).
One of the patients appreciates feeling the positive team spirit:
And these nurses, when they were in the corridors outside the rooms, we could hear them sometimes, if you'll pardon the expression, messing around, eh? They were laughing and all that, and I told them that, that for the patient it does a lot of good. (CMI 23).
Some patients find it useful to write down their experience, to obtain psychological support or to make conscious efforts to think positively because they have survived.
Some kind of debriefing that might have been helpful…maybe a psychologist or a psychologist. (CMI 17);
Just see the positive. You're still alive. (CMI 08).
Other interviewees express their need for an improved communication and wishes for more humane care of a “medical case”, i.e. respect for the person. Communication problems are widely reported by the caregivers themselves. In our patients' interviews, it is possible to capture a demand that is more than communication, that is, attention. Some patients need more attention from the team, which means better interaction, communication or gentleness. A few patients feel neglected or not taken into consideration as a person. Each patient appears to be a person with different needs to care for.
One of the interviewees advises the healthcare professionals on how to approach a patient:
They should approach people slowly… And speak a little slower. And not too loud. Because that scares the hell out of you… And if touch, then please touch on the hands, so that one can also see it. And say, I'm touching you or I'm touching you on the hand now…Don't just come and touch somebody. That scares you and then you switch to defence. (CMI 09).
Another patient regrets that there is not more discussion with the health care team due to lack of time:
But sometimes you should have a little more…to talk, just a little time, but they probably have no time. (CMI 15).
The quality of the presence is also important as it helps most patients to feel secure.
The nurse holding my hand and saying that I was fine… and that calmed me down a lot, to feel that presence at my side. (CMI 23).
Some patients report, in contrast, a presence that ignores them:
they were discussing, these two girls [nurses], without talking to me… I thought it was weird, I said what am I doing here. (CMI 05).
This means that the clinical team should act as if patients were aware of everything, whatever their level of sedation or wakefulness. More generally, what reassures patients is to feel part of the whole process:
That was not discussed with me at all. I think that very little information is passed on here in general anyway. Especially medical information… I would prefer absolute transparency and openness. (CMI 11)
In the interviews with relatives, the same ambivalence is found in the assessment of how attentive and respectful the clinical team was. Some relatives found that the team was very responsive to them, which also can help the patient (CMI 12). Other relatives say that they suffered from a lack of understanding and good communication at the beginning of the hospitalisation in the ICU. One relative regrets not having been included in the care process:
I would have expected a bit more from the hospital. That you as a relative would be supported in such situations… I really felt neglected as a family member…I really would have hoped for more help there…is there someone in the hospital who is there for these situations and would accompany the relatives? (CMI 21 relative).
One relative would like to have more time at first to understand what was going on:
Basically, you arrive at the ICU and walk into the room with no warning. You've never been up there before. You don't know how he's lying there. You don't know how many tubes he has. You don't know what he even looks like. You don't know what he can do, what he can't do. You walk into the room, there is a nurse who says: Can you see him like this? You say: Yes. You don't have any other choice. What other choice do you have? And that's the end of it. No one asked me afterwards. Nobody asked me in the meantime. I didn't even think about psychological care because I didn't have time. (CMI 20 relative).