More and more people being cared for on ventilators are conscious during the treatment, but what is it like to be fully conscious without being able to communicate with the world around you? A thesis from the Sahlgrenska Academy at the University of Gothenburg, Sweden, has lifted the lid on a world of panic, breathlessness and unheard pain.
It has been far more common since the beginning of the 21st century for patients to be conscious during ventilator treatment. There are medical benefits to be gained from not sedating patients, not least when it comes to shortening the amount of time spent on ventilator treatment as well as in hospital.
But lying fully conscious on a mechanically ventilator is a traumatic experience, reveals a thesis from Veronika Karlsson at the University of Gothenburg's Sahlgrenska Academy, where she interviewed patients and relatives during and after ventilator treatment.
Panic and breathlessness
"The studies show that many people who are conscious while ventilator treatment experience feelings of panic," says Karlsson. "Many describe being breathless, and pain from the tube and probes makes it hard for them to relax and sleep.
"After breathing, the most difficult thing was not being able to talk. All of the patients who were interviewed communicated by nodding or shaking their head, but also developed individual communication patterns using facial expressions, looks and body language to express their suffering."
Attentive carers important
The 14 patients who were interviewed were in ventilator treatment between 2 and 88 days. Regardless of the duration they all stated that they felt helpless and powerless in relation to the ventilator treatment, and completely dependent on the carers' ability and willingness to help them. However, the ventilator treatment was perceived as less unpleasant if carers were attentive in their communication and actively "there for" patients, in other words concentrated all of their attention on the patients when they needed help.
New set of demands
"Having patients conscious during ventilator treatment brings a new set of demands in terms of the care given and the environment that the patients are in," says Karlsson. "For example, it's very important that nurses are attentive and present, use a friendly tone of voice, have the ability to read patients' facial expressions and body language, and adopt a warm approach. When it comes down to it, they need to be able to get across to patients that they are in it together."
Preferred to be conscious
The negative experiences were still perceived as such a week after the patients had left intensive care. However, when subsequently asked whether they would have chosen to be conscious or sedated, eight out of 12 patients said that, in spite of everything, they would have preferred to have been conscious. "My interpretation is that those who chose consciousness had nurses who were standing by" says Karlsson.
Ambivalence among relatives
The patients' relatives also showed a degree of ambivalence towards sedation where they could see that the patients were suffering. Furthermore, many did not have the opportunity to talk to the carer in private without the patient being able to hear. "The results show that it is difficult and painful to be cared for while conscious during ventilator treatment, but that by actively 'being there' for patients, nurses can alleviate the situation and help patients to get through it," says Karlsson.
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The thesis was successfully defended on 20 January 2012.