Mr. Klaus K. distinguishes the possibility of shared decision-making on a social level, as opposed to the medical decision where his opinion was not taken into account.

Il signor Klaus K. distingue la possibilità di una decisione condivisa a livello sociale, in contrapposizione alla decisione medica in cui la sua opinione non è stata presa in considerazione.

E : Sì, sì. Ad esempio, il trasferimento dall'ospedale 1 all'ospedale 2, in cui sono stato chiaramente coinvolto.
I : Mhm.
E : Mi hanno parlato e mi hanno detto chiaramente che l'ospedale 2 era la scelta migliore. Che secondo loro, dato il mio stato di invalidità (paraplegia), l'ospedale 2 era l'unica possibilità per la mia guarigione. Ho dovuto concordare con loro, perché sono sostenitore dell'ASP (Associazione svizzera dei paraplegici) da diversi anni. In realtà ho anche compreso questa decisione a favore dell'ospedale_2 ed ero favorevole. Da questo punto di vista, sì, sono stato coinvolto in questa decisione relativamente importante. Credo di aver dovuto semplicemente lasciare che tutto il resto, dal punto di vista medico, andasse come doveva andare. In quel caso non c'è un «lo vuole o non lo vuole».

Mancanza di una decisione condivisa

M. Klaus K. distingue la possibilité de prise partagée de décision au niveau social, à l’opposé de la décision médicale où son avis n'était pas pris en compte.

E : Oui, oui. Par exemple le transfert de l'institution de santé_1 vers l'institution de santé_2, là j'ai été clairement impliqué.
I : Mhm.
E : Ils m'ont parlé et m'ont clairement dit et se sont clairement exprimés sur le fait que l'institution de santé_2 serait le meilleur choix. Qu'en tant qu’incomplet (paraplégique), il n'y avait selon eux rien d'autre à faire pour me soigner que l'institution de santé_2. Je ne pouvais qu'être d'accord, car je suis donateur de l'ASP (Association suisse des paraplégiques) depuis plusieurs années déjà. J'ai également compris cette décision en faveur de l'institution de santé_2 et l'ai saluée. De ce point de vue, oui, j'ai été impliqué dans cette décision relativement importante. Je pense que tout le reste de ce qui s'est passé sur le plan médical, je l'ai laissé faire. Là, il n'y a pas de « vous le voulez ou vous ne le voulez pas ».

Absence de prise de décision partagée

Herr Klaus K. unterscheidet die Möglichkeit der gemeinsamen Entscheidungsfindung auf sozialer Ebene von der medizinischen Entscheidung, bei der seine Meinung nicht berücksichtigt wird.

E : Jaja. Zum Beispiel die Verlegung von der der Gesundheitsinstitution_1 in die Gesundheitsinstitution_2, da wurde ich ganz klar involviert.
I : Mhm.
E : Sie haben mit mir geredet und haben mir klar gesagt und sich klar dazu geäussert, dass die Gesundheitsinstitution_2 die beste Wahl wäre. Dass es für mich als Inkompletten (Paraplegie) ihrer Meinung nach für das Heilen eigentlich nichts anderes gibt als die Gesundheitsinstitution_2. Ich musste dem beipflichten, weil ich schon seit mehreren Jahren Gönner der SPV (Schweizer Paraplegiker Vereinigung) bin. Ich habe diesen Entscheid für die Gesundheitsinstitution_2 eigentlich auch begriffen und habe sie begrüsst. Von dem her, ja, in diesem relativ wichtigen Entscheid, war ich involviert. Ich glaube, alles andere was so medizinisch gelaufen ist habe ich einfach so laufen lassen müssen. Dort gibt es kein, "wollen Sie es oder wollen Sie es nicht".

Fehlende gemeinsame Entscheidungsfindung

Susanne

E : Yes, yes. For example, the transfer from health institution_1 to health institution_2, I was clearly involved in that.
I : Mhm.
E : They talked to me and clearly told me and clearly stated that Healthcare institution_2 would be the best choice. That for me as an incomplete person (paraplegia), in their opinion, there is really nothing else for healing but Healthcare institution_2. I had to agree because I have been a donator of the SPV (Swiss Paraplegic Association) for several years. I actually understood this decision in favour of Healthcare Institution_2 and welcomed it. From that point of view, yes, I was involved in this relatively important decision. I think I just had to let everything else that happened medically go. There is no ‘do you want it or don't you want it’.

Lack of shared decision making

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. Klaus K. explains that he had to read lips to communicate and vice versa, and this required a lot of energy.

Of course, I have a problem with the fact that I can't defecate.
I can't talk. I can't express myself.
That I can't say "I would like to" or "please do something" or whatever.
I can remember having to read lips.
But they also had to do that with me, i.e. read my lips when I said something.
For a long time, that was the only form of communication you could have with me.
Terribly annoying. Terribly time-consuming in the sense that, yes, it also takes strength.
Sometimes you have to say it two or three times before they understand it to some extent.
Yes, of course that wasn't so nice. It really wasn't.
But I actually realised it here.
I think that's when the dreams started a bit.

Reading lips

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. Klaus K. found it very distressing that he did not quickly regain clear, intelligible speech after the tracheal cannula was removed.

Yes, actually / the time in the intensive care unit was not a pleasant one. Actually never. In no case. I couldn't talk. When I could start talking with the appropriate cannula, i.e. with the language / I don't remember how to say it. You had an expression for it. It was exhausting, crazy. I would have preferred not to have talked at all. Of course, I'm not necessarily the most communicative person either. But I don't like it when I'm not heard. And of course being heard means / or of course also says that I have to have a certain quality of speech and not just anything and half of it is then air and yes, you still have to / yes. It wasn't pleasant. You could talk, but just not really.
That was one thing. The other thing, of course, was moving when you realised that wasn't possible. Um. Yes. Being immobile. That's always the case, but of course that alone causes panic from time to time. When I realise that I don't have the option of running away. I feel like jumping away.
I : Mhm.
E : It's enough to make you want to run away. Quite simply. Because I can't. How could I? So you want to run away but can't. That's not nice either.

Unable to speak

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.

Possible misunderstandings

Mr. Klaus K. was pleased to know that his partner was kept informed.

E : She (partner) still says today that the information was great. The doctors spoke on the phone from time to time. One of them even phoned and said: ‘Listen, I'm going down to the operating theatre now. I'm going to operate on your partner for the next six hours or so.’ But he didn't know whether I would still be around afterwards.
I : Mhm.
E : Because it was a relatively delicate operation. She always knew that.
I : Mhm.
E : She always knew whether it was a delicate operation or a relatively simple one with good prognoses. She always knew that. She was well informed. Yes.

Keep relatives informed

Family and friends are helpful during the ICU stay. But patients want to be able to choose their visitors. It is therefore important that the team informs and involves the family.

Klaus K.

Lack of shared decision making

Video Interview

Related experiences

Other experiences by Klaus K.

Klaus K.