Mr. Charles C. didn't have the strength to fight the medical decisions, but in the end he understood that it was for his own good.

Il signor Charles C. non aveva la forza di opporsi alle decisioni mediche, ma alla fine capì che era per il suo bene.

No, l'unica cosa che ricordo è che ero di nuovo al (nome dell'ospedale) con un tubo nella gola, credo. Non ricordo i dettagli, ma lui voleva togliermelo e io dicevo: “No, la prego, non lo faccia, mi farà male”. E l'infermiera diceva: “No, no, dobbiamo farlo, dobbiamo farlo”. Mia moglie era lì con me e alla fine l'hanno fatto. Ma io non volevo davvero che lo facessero. Ma lui aveva ragione e doveva farlo, era l'unica cosa da fare. No, non riesco a pensare a un solo momento in cui hanno voluto fare qualcosa che io non volevo, in cui io avevo ragione e loro torto. Non c'è stato un solo momento, hanno sempre fatto la cosa giusta e l'hanno fatta bene.

Spiegare le decisioni

M. Charles C. n'a pas eu la force de lutter contre les décisions médicales, mais il a fini par comprendre que c'était pour son bien.

E : Non, la seule chose dont je me souvienne, c'est encore une fois à l'hôpital (nom de l'hôpital) quand on m'a enfoncé un tube dans la gorge parce que je crois que je ne me souviens pas des détails et qu'il voulait le retirer. Je ne me souviens pas des détails et il voulait l'enlever et je disais, vous savez, s'il vous plaît ne le faites pas, s'il vous plaît ne le faites pas, ça va faire mal. Et l'infirmière a dit non, non, nous devons le faire, nous devons le faire. Et ma femme était là aussi à ce moment-là, et ils l'ont fait. Mais je ne voulais vraiment pas qu'ils le fassent. Mais il avait raison et il devait le faire, vous savez, c'était tout ce qu'il y avait. Non, je ne peux pas penser à un seul instant où ils ont voulu faire quelque chose que je ne voulais pas qu'ils fassent, où j'étais, où j'avais raison et où ils avaient tort. Il n'y a pas eu un seul instant, ils ont toujours eu raison et ils l'ont fait gentiment.

Les décisions doivent être expliquées

Herr Charles C. hatte nicht die Kraft, sich gegen die medizinischen Entscheidungen zu wehren, aber am Ende verstand er, dass es zu seinem eigenen Besten war.

E : Nein, das Einzige, woran ich mich erinnere, war wieder im (Name des Krankenhauses), als mir dieser Schlauch in den Hals eingeführt wurde, weil ich glaube, ich kann mich nicht an die Details erinnern, und er wollte ihn herausnehmen, und ich sagte, bitte nicht, bitte nicht, das wird wehtun. Und die Krankenschwester sagte nein, nein, wir müssen das machen, wir müssen das machen. Meine Frau war zu der Zeit auch dabei und sie taten es. Aber ich wollte wirklich nicht, dass sie es tun. Aber er hatte recht und musste es tun, wissen Sie, es gab keine andere Möglichkeit. Nein, ich kann mich an keinen einzigen Moment erinnern, in dem sie etwas tun wollten, was ich nicht wollte, in dem ich recht hatte und sie unrecht. Es gab keinen einzigen Moment, sie hatten immer recht und sie haben es gut gemacht.

Entscheidungen müssen erklärt werden

Corine

E : No, the only thing I recall of that was again in the (name of the hospital) when I had this tube going down my throat because I think. I cannot remember the details and he wanted to take it out and I was, I was saying you know please don’t, please don’t, this is gonna hurt. And the nurse said no, no, we have to do it, we have to do it. And my wife was there as well at the time, and they did. But I really didn’t want them to. But he was right and he had to do it, you know, it was all there was. No, I cannot think of a single instant where they wanted to do something that I didn’t want them to, where I was, where I was right and they were wrong. There was not a single instant, they were always right and they did it nicely.

Decisions must be explained

Patients want to be involved in decisions, but they do not always have the capacity to understand and contribute. To gain confidence in the decision, patients want information about what is happening in the intensive care unit (ICU).

Share decision making process

Today's medical and technological advances allow patients to survive serious and life-threatening illnesses. Experiencing such a serious illness that requires intensive care treatment can have a profound impact on one's life.

In this section, you can learn how other people experienced their time in an intensive care unit. In short video or text excerpts, patients and their families share their experiences with a serious, often life-threatening illness and treatment in an intensive care unit. You can also learn about the changes those affected deal with after their time in the intensive care unit.

Grazie alle possibilità mediche e tecniche offerte dalla terapia intensiva, oggi un paziente può sopravvivere a malattie gravi che in passato erano mortali. L’esperienza di queste gravi condizioni di salute e l’esperienza della terapia intensiva possono cambiare la vita in modo radicale, sia ai pazienti che ai loro cari.

In questa sezione potete capire come altri pazienti hanno vissuto il loro periodo in un reparto di terapia intensiva. In brevi video o estratti di testo, i pazienti raccontano la loro permanenza in questo reparto, il modo in cui hanno gestito questo periodo della loro vita, e come questa esperienza li ha cambiati.

Esperienze in terapia intensiva

Les possibilités médicales et techniques permettent de plus en plus souvent aux patients de survivre à des maladies graves et autrefois mortelles. L’expérience par les patients de ces maladies graves et de leur prise en charge médicale en soins intensifs peuvent changer la vie d’une manière très mémorable.

Dans cette section, vous découvrirez comment d’autres personnes ont vécu leur séjour dans une unité de soins intensifs. Dans de courts extraits vidéo ou textuels, les patients rendent compte de leur séjour à l’unité de soins intensifs. Ils témoignent également des changements qui peuvent se produire dans la vie d’une personne après les soins intensifs.

Expérience en médecine de soins intensifs

Die heutigen medizinischen und technischen Möglichkeiten lassen Patient*innen schwere und lebensbedrohliche Erkrankungen überstehen. Die Erfahrung einer so schweren Erkrankung, die eine intensivmedizinischen Behandlung benötigt, kann das Leben sehr einprägsam verändern.

Wie andere Menschen die Zeit auf einer Intensivstation erlebt haben, können Sie in dieser Sektion erfahren. In kurzen Video- oder Textausschnitten berichten Patient*innen und Angehörige,  über die Erfahrungen einer schweren oft lebensbedrohlichen Erkrankung und einer Behandlung auf einer Intensivstation. Ebenso können Sie erfahren, mit welchen Veränderungen die Betroffenen sich nach der Zeit auf der Intensivstation auseinandersetzen.

Erfahrungen Intensivmedizin

Experiences in Intensive Care

Susanne

Despite the constant noise of the ICU, Mr. Charles C. felt safe and was impressed with the efficiency of the clinical team.

I remember unfortunate! No,  I remember the efficiency and the ease with which people operated. You felt that you were in very good and safe hands. That’s one impression that I have. The second impression is, it was frustratingly,  difficult to sleep at night because of the commotion going on,  because of the discussions outside the room and,  you know. I commented about it a few times. But. So two impressions: one, they really take care of you. Two, sound doesn’t seem to be an important thing. Because they got lots of things to do. And therefore, at night when you’re supposed to be asleep, you can’t be asleep, you know so two little things.

Mr. Charles C. talks about the efficiency of the ICU.

Patients generally have a good impression of the clinical team, which they consider professional and very active. They are often confused about what is going on, and tired because of the severity of their illness. Noise and lights may bother them, but they usually feel safe in this intensive care unit.

Patient’s typical perceptions

Mr. Charles C. used headphones to avoid being bothered by the noise.

E: And the only other negative that I have was  that a hospital functions 24 hours a day. Everyone is working and doing things 24 hours a day. The norm is that one tries to sleep during the night, but the people who are working 24 hours a day carry on as if there is no day and night. So noise disturbance is quite frequent. And I found that particularly in (location 1). And in the end, I would put on noise cancellation headphones if I was trying to sleep at night. Because, you know, whether it was two people outside in the common space who were talking at a distance and giggling and joking about things, the noise disturbance was there. And I mentioned it a few times and, you know, I got the feeling that I was just being a grumpy old man and maybe I was.

Mr. Charles C. used headphones against noise.

The intensive care unit is bustling with activity. Clinical teams are busy with intensive patient care and emergencies. The environment is dominated by machines and modern technology that enable survival in critical illness.  In addition, there are team conversations and sounds from neighboring patients. This leads to noise, light, which can be disturbing for the patients.

Perception of the environment of the intensive care unit

Mr. Charles C. remembers very unpleasant hallucinations of smell and taste.

And there, it was a more difficult thing. I was in a coma for four days and I was losing weight and it was difficult to feed me. And I was on morphine quite heavily. And that gave me all sorts of problems: one, the most severe, was the sense of smell and of taste, which I reckon was augmented a hundred times. So, one little grain of sugar in water was impossible to drink. Smells, I could / I felt I could smell like a wolf smells. I could / I knew what was happening around me, not from a directional point of view, but that was very difficult.  And,  the only problem I had there then, was getting over to the people who were dealing with me:   that I couldn’t eat these things or drink these things, because the taste was too strong. And each time I would take a glass of even water, or orange juice, I would be vomiting, because of the strength of the taste. That was something that I found in, you know. It was I guess about a day and a half before I really managed to convince someone that I wasn’t exaggerating. And we think that the reason was the morphine, but it may not have been. It may have been swollen mouth or whatever.

Mr. Charles C. suffered from an olfactory hallucination.

Many patients report experiences that can be associated with hallucinations and confusion. These  memories are often present for months after hospitalization.

Delusion/hallucination/ dreams/anxiety.

Because he was not in a coma, Mr. Charles C. remembered his ICU stay.

I: What do you remember, is really what you remember yourself or it’s what people have said to you after? 
E: No, it’s what I remember myself. I usually write up these experiences and just keep a note what I need to remember. And then afterwards of course, a year later you still have impressions of what happened, which is what I gave you to start with. But it’s what I remember, not what other people were telling me. 

I: And so you told me you have taken some notes. 

E: Yes, I was reading them earlier this morning for the intensive care that I had in 2012 in the (name of the hospital) and there, it’s, I made more precise notes. This time, in (location 1) it was really not necessary because there wasn’t very much to write down. It was just a matter of keeping a check on the monitors behind me and it was that sort of thing that I was doing.

Mr. Charles C. remained awake in the ICU and remembers well.

Our interviewees often have to deal with memory gaps. Their descriptions are a mixture of what they experienced themselves,what is added afterwards by relatives or team members, or feelings/emotions to which they give words afterwards. Regardless of these limitations, it is important to note that these memories represent real experiences for the patient.

Forgetting: remembering with the help of other people.

Mr. Charles C. sometimes felt lonely and insecure at night because the team did not come immediately.

E : Isolated and / isolated would also mean a little bit insecure, but there was one incident at the (name of the hospital). I was there in intensive care at the same time as (-) someone whose name I will mention, because he was outside and everyone knows it, XXXX  who was the mastermind of the Montreux festival, had had a bad skiing accident and he was in intensive care next to me at the same time and in fact he died while he was there. So, I think that he was I think he was a much more difficult case to deal with than me and required quite a bit of attention as they were trying to save him. And I // on one night, I just could not get anyone to come. I sounded, and sounded, and sounded, I forget what it was, the reason I wanted someone. But no one came. And I could actually / I have a memory, I could see (them) in the next room, but // that was a time when I felt alone, there was nothing I could do. I wasn’t allowed to get out of bed, nothing I could do about it. But it happened just once.

The team did not come quickly enough

Readiness to communicate from the team: Patients have the feeling of being ignored, isolated,  considered as not being to able understand.Sometimes the patients had the feeling that the team was arrogant and felt threatened.

Readiness to communicate from the team

Mr. Charles C. says that he sometimes found it difficult to make the clinical team understand that what he was feeling, whatever the cause, was powerful and disturbing.

E : Yeah, 2012 was burned. My hands and a little bit my face. And that was more serious, because I was affected physically. I mean I was in (location 1), but I didn’t feel it at all. And the (-) there, it was a more difficult thing. I was in a coma for four days and I was losing weight and it was difficult to feed me. 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, which I reckon was augmented a hundred times. So, one little grain of sugar in water was impossible to drink. Smells, I could / I felt I could smell like a wolf smells. I could / I knew what was happening around me, not from a directional point of view, but uhm that was very difficult and it // and the only problem I had there then, was getting over to the people who were dealing with me (-) that I couldn’t eat these things or drink these things, because the taste was too strong. 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. That was something that I found in you know / it was I guess about a day and a half before I really managed to convince someone that I wasn’t exaggerating. And we think that the reason was the morphine, but it may not have been. It may have been swollen mouth or whatever.
I : You were able to speak?
E : Oh I was able to speak, yes. Yes, I had no problem with that. I was fully / when I’d come out of the coma, I was fully conscious and alert. But I had problems with the taste and the smell (-) and the nights with hallucinations all the way through the nights, ugh awful! But apart from that, the physical support was fabulous. I mean, I had never been through that experience before, but the // being in soins intensifs in the (name of the hospital), was very very good.

Misunderstanding is disturbing

Patients sometimes find it difficult to organise their information because their situation in the ICU is not properly explained. The result is a feeling of uncertainty and sometimes panic.

Charles C.

Decisions must be explained

Video Interview

Related experiences

Other experiences by Charles C.

Charles C.