Mr. Igor I.  was reassured. He knew that his wife was involved in medical decisions.

Il signor Igor I. si sentiva rassicurato. Sapeva che sua moglie era coinvolta nelle decisioni mediche.

I : Ma era, per così dire, questo conflitto tra 
E : Sì. Tra il voler parlare e non poterlo fare. Qualcuno ti fa delle domande, ma tu non riesci a rispondere, anche se vorresti. Non ci riesci.
I : Ok. È stato coinvolto nelle decisioni? Se lo ricorda? Le è stato chiesto?
E : Da quando sono qui: sì. Prima no.
I : Ok. Quindi nell'altro reparto di terapia intensiva, cioè nel reparto per casi gravi, non è stato coinvolto?
E : No.
I : Chi ha deciso per lei?
E : Non lo so.
I : Mhm.
E : Non ne ho idea. È anche la parte francofona, la Francia e 
I : Lei parla francese?
E : Sì. Mia moglie parla solo francese.
I : Mi scusi. Sì. Sua moglie è stata coinvolta nelle decisioni?
E : Sì.
I : Ne avete mai parlato?
E : Sì, ne parliamo molto. Sì.
I : Sì. Ok.
E : In realtà eravamo già d'accordo prima dell'incidente. Siamo molto, molto d'accordo. Ne abbiamo parlato molto. Non servono altre parole.
I : Ok.
E : So cosa vuole lei. Lei sa cosa voglio io. 
I : Mhm.
E : E il 99,99% delle volte siamo compatibili.

Coinvolgere i parenti

M. Igor I. était rassuré,  sa femme participait aux décisions médicales.

I : Mais c'était pour ainsi dire ce conflit entre 
E : Oui. Entre être muet et vouloir parler et ne pas pouvoir le faire. Quelqu'un vous pose des questions, mais vous ne pouvez tout simplement pas y répondre, même si vous le voulez. Ce n'est pas possible.
I : D'accord. Avez-vous été impliqué dans des décisions ? Vous en souvenez-vous ? Vous a-t-on demandé votre avis ?
E : Depuis que je suis ici : Oui. Avant, non.
I : D'accord. Donc dans l'autre unité de soins intensifs, c'est-à-dire à l'hôpital de soins aigus, vous n'avez pas été impliquée ?
E : Non.
I : Qui a décidé pour vous ?
E : Je ne sais pas.
I : Mhm.
E : Je ne sais pas. C'est aussi la partie francophone, la France et 
I : Vous parlez français ?
E : Oui. Ma femme ne parle que le français.
I : Excusez-moi. Oui. Votre femme a-t-elle été impliquée dans les décisions ?
E : Oui.
I : En avez-vous déjà parlé ?
E : Oui, on en parle beaucoup. Oui.
I : Oui. D'accord.
E : En fait, nous sommes déjà d'accord sur ce point avant l'accident. Nous sommes très, très d'accord. Nous avons beaucoup parlé ensemble. Il n'y a plus besoin de mots.
I : D'accord.
E : Je sais ce qu'elle veut. Elle sait ce que je veux. 
I : Mmm.
E : Et c'est généralement compatible à 99,99%.

Impliquer les proches

Herr Igor I. war beruhigt, da seine Frau an den medizinischen Entscheidungen beteiligt war.

I : Aber das war sozusagen dieser Konflikt zwischen 
E : Ja. Zwischen stumm sein und sprechen zu wollen und es nicht können. Jemand stellt Ihnen Fragen, aber sie können diese einfach nicht beantworten, obwohl sie wollen. Geht nicht.
I : Okay. Sind Sie in Entscheidungen eingebunden worden? Erinnern Sie sich daran? Hat man Sie gefragt?
E : Seit ich hier bin: Ja. Vorher nein.
I : Okay. Also in der anderen Intensivstation, d.h. im Akutspital, sind Sie nicht eingebunden worden?
E : Nein.
I : Wer hat für Sie entschieden?
E : Ich weiss es nicht.
I : Mhm.
E : Keine Ahnung. Es ist auch der französischsprechende Teil, Frankreich und 
I : Sprechen Sie Französisch?
E : Ja.Meine Frau spricht ja nur Französisch.
I : Entschuldigung. Ja. Ist Ihre Frau in Entscheidungen eingebunden worden?
E : Ja.
I : Haben Sie darüber mal geredet?
E : Ja, wir reden viel darüber. Ja.
I : Ja. Okay.
E : Das sind wir eigentlich auch schon vor dem Unfall einer Meinung. Wir sind uns sehr, sehr einig. Wir haben sehr viel miteinander gesprochen. Da braucht es eigentlich keine Worte mehr.
I : Okay.
E : Ich weiss, was sie will. Sie weiss, was ich will. 
I : Mhm.
E : Und das ist meistens zu 99,99% kompatibel.

Angehörige einbeziehen

Susanne

I : But that was, so to speak, this conflict between 
E : Yes. Between being mute and wanting to speak and not being able to. Someone asks you questions, but you simply can't answer them, even though you want to. You can't.
I : Okay. Have you been involved in decisions? Do you remember that? Have you been asked?
E : Since I've been here: Yes. Before that, no.
I : Okay. So in the other intensive care unit, i.e. in the acute hospital, you were not involved?
E : No.
I : Who made the decision for you?
E : I don't know.
I : Mhm.
E : I have no idea. It's also the French-speaking part, France and 
I : Do you speak French?
E : Yes.My wife only speaks French.
I : Excuse me. Yes. Has your wife been involved in decisions?
E : Yes.
I : Have you ever talked about it?
E : Yes, we talk about it a lot. Yes.
I : Yes. Okay.
E : We actually agreed on that even before the accident. We are very, very much in agreement. We've spoken to each other a lot. We don't really need any more words.
I : Okay.
E : I know what she wants. She knows what I want. 
I : Mhm.
E : And that's usually 99.99% compatible.

Involve relatives

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

Corine

Mr IGOR I. could only see the ceiling of the room. He was very sensitive to the various sounds and noises.

I didn't see any windows either. Nothing at all. 
I: What did you see? 
E: Only the lights from 
I: ceiling. 
E: From the ceiling, yes. And sometimes the faces of the staff. 
I: How was it with hearing? 
E: Almost everything. 
I: How was that for you? 
E: Partly it was almost painful in the ears at the beginning. Especially the high-pitched sounds.  When they put down tweezers or scissors or something, there was a resonance. In the head afterwards, which was not very pleasant.  Also paper. When someone wrote, it rustled like that. 
I: Yes. 
E: When someone wrote something down or partly wrote on the laptop, that annoyed me. 
I: Yes. Did that bother you when you were sleeping or was it just annoying? 
E: No, it also disturbed when I was sleeping. 
I: Yes. Were you able to sleep well? 
E: No. Not at all.

Mr. IGOR I. remembers the ceiling of the room and a lot of 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. Igor I had unpleasant dreams during the artificial coma.

I: Are they dreams like that?
E: Yes, such flash dreams and actually something / I don't know how to explain it. / Partly terrible / once I dreamt in such a way that you can imagine like a circle. 
This circle is split up into many small parts. And there I saw my trike again and again. But always only small sections on / split. 
When I woke up, I was soaking wet.
And completely [confused].
A real nightmare. 
I: Yes. 
E: That then repeated itself almost the whole night. 
I: And this dream came over and over [again? 
E: Yes. Yes. Yes.

In Mr. Igor I. sedation causes dreams.

Many patients in the ICU experience the state of coma or sedation. Coma can be caused by changes in metabolism, the severe illness, or sedating and pain-relieving medications. Thus, patients often experience their time in the ICU in a fragmented way and forget much of the experience.

Coma/Sedation

Mr. Igor I. explains how he was talking with hands and feet.

E : I then made myself understood in writing by nodding and shaking my head and writing it down.
E : Then they FINALLY understood. Then I was very happy when they stopped the morphine.    
I : Can I ask you a quick question? How long were you intubated? Or did you also have a tracheotomy?
E : No, I didn't have a tracheotomy. I was intubated. I was in a coma for a month and then the (?) was another month.
I : But by then you no longer had a breathing tube?
E : I had it for two months.
I : Sorry, just to be clear. Because this incision is often made via the trachea.
E : No. I didn't have anything.
I : Okay. Thank you.
E : That was also very bad. Not being able to speak.
I : Yes. Tell us a little bit. How did you communicate?
E : Yes, either with my hands or by shaking my head.
E : Then I tried to speak again and again. But that didn't work.
I : I know.
E : I think two months is an incredibly long time. I didn't realise very much in the first month, but I did in the second month.

Bodylanguage

Most patients can't speak and have to communicate with their hands, lips or by writing on tablets. They can often hear, however, which can lead to frustration at not being understood. They talk about the need of different means for being understood by the team , for communicating with their families and receiving the moral support they need. Their experiences show the importance of knowing the right tools and ways to communicate with the patient.

Means of communication

Mr. Igor I. remembers the experience of not being able to move.

E : Especially the nailing when you come back. What is that supposed to be? 
I : By nailing you mean tying? 
E : The tying down. Not just the tying down, but the whole body somehow tied down. Although it (the body) wasn't.

Recall the weakness.

Memories of physical constraints and frustration linger on.

Igor I.

Involve relatives

Related experiences

Other experiences by Igor I.

Igor I.