Acute phase

Treatment in the intensive care unit

Sepsis patients often need to be treated in intensive care. This can take several days to several weeks, depending on the severity of the illness, the underlying diseases present and possible complications. Many of the patients are in an artificial coma for at least some time and have to be artificially ventilated. The duration varies greatly in this case as well.

Treatment in an intensive care unit is an exceptional situation for those affected, characterised by fears, pain and the unfamiliar surroundings. People who are in an artificial coma can often still perceive voices, sounds or even pain. For this reason, relatives should talk to the patient in an artificial coma during a visit and, if possible, also hold his or her hand. This can have a calming effect.

For the relatives, the situation is equally difficult to bear. They know their family member is in a life-threatening situation, connected to machines. Often a person's outward appearance changes due to the severity of the illness. Since the staff in intensive care units have a heavy workload to deal with and both the medical and nursing staff have to take care of many critically ill patients, conversations with relatives are sometimes abundantly brief. This often leads to incomprehension on the part of the relatives and stirs up additional fears.

In order to obtain up-to-date information on the state of health, it is advisable to discuss the procedure with the staff. Designate a person within the family who contacts the attending physicians once a day (by telephone or during a visit) and then shares the result of the conversation with the others. Avoid that each visitor individually asks about the current status. It is also recommended to write down the questions in advance so that nothing is forgotten in the short time of the conversation.

Recovery is not continuous in most cases. Often, after days of improvement, there are times when no progress can be seen or even regressions or renewed complications occur. Unfortunately, due to the severity of the disease, even doctors cannot avoid or foresee this. As soon as the patient has overcome the sepsis, he or she is transferred to a normal ward or, if possible, immediately to a rehabilitation clinic.

What is delirium and how can relatives deal with it?

Some patients develop delirium, acute confusion, during their stay. They experience a world that makes no sense to others but seems completely real to themselves. This can be frightening for both the patient and the relatives. A delirious patient may not believe their friends and family when they try to reassure them - even if they recognise them.

Delirium can show itself in two ways: quite obviously to outsiders or more hidden. Some patients are restless and agitated, which is particularly stressful for relatives. Mostly, however, delirium runs its course quietly, it may make patients very sleepy and is difficult for medical staff and relatives to recognise. Delirium is often an extreme condition: Either patients do not sleep at all or they sleep almost all the time; either they are constantly restless or they move extremely little. However it presents itself, delirium is a sign that the person's brain is not working properly because they are very ill.

Reasons for delirium can be infections, side effects of medication or malfunctions of individual organs such as kidneys, heart and lungs. Delirium is usually only temporary. It usually lasts a few days to a week. Sometimes, however, it can take longer before it disappears completely.

There are several ways to help patients with delirium:

• Talk to the affected person, hold his hand, try to reassure him.
• Regularly explain to him that he is in hospital and discuss the situation.
• If the patient is given sleeping pills and you are not sure what to talk about, you can, for example, read from a favourite book or newspaper.
• If it is possible for you, keep a diary in which you write down what happens every day.
• Use a smartphone to say goodnight in the evening. A familiar voice and a familiar face help the sick persons to get their orientation and get to rest.
• Record video messages on the smartphone/tablet that can be shown to the person concerned. Make reassuring, orienting statements, e.g.: "You are in hospital. We know about it. The nurses, carers and doctors are taking good care of you. Do what they tell you because they will help you get better. Our thoughts are always with you and we will visit you tomorrow. We love you.”

If you have any questions about delirium, you can contact Mr. Nydahl or the office of Deutsche Sepsis-Hilfe e.V.

Intensive care diary

Many patients do not remember the acute phase of the disease. Due to the artificial coma or delirium, they do not perceive the processes in the intensive care unit at all or only to a limited extent or can only assess them to a limited extent.

Their sleep rhythm is disturbed and their ability to perceive things is limited (lying down, partition walls to neighbouring patients, noises from other rooms). Therefore, patients misperceive many things and subsequently build up fears. These fears may continue to accompany them after their stay in hospital. An intensive care diary, which is kept during the acute phase of the illness, can clarify questions in retrospect and thus reduce fears.

Such a diary can help the relatives to structure the processes that have taken place, so that they can later reproduce them chronologically. Often, after longer stays, one no longer knows at what point in time which decisions were made and how the patient's state of health developed over time. If the patient then asks questions later, the relative may not be able to give correct and sufficient answers. As a result, it is more difficult for the patient to process and come to terms with what he or she has experienced.

For this reason, it may be advisable during longer stays of a relative in the intensive care unit to briefly write down a few lines about the course of events every day.

Examples of topics worth noting are:

• Important medical decisions or interventions (E.g.: Was surgery necessary today?)
• Unusual happenings in the room (Interventions at the neighbouring bed, restless fellow patients, etc.)
• What impression did the patient make that day? (Sad, confused, sleepy etc.)?
• What progress or regression was there?
• Were there any important personal, family decisions; What are the relatives doing??

These can only be suggestions. Naturally, it is up to you what you want to note down and report. Taking photos is also a very personal decision. The nursing staff involved in the treatment can also make entries in the intensive care diary. Many intensive care units in Germany already participate in such an approach.

If you have any questions about an intensive care diary, you can contact Mr. Nydahl or the office of DSH e.V.

Treatment in the normal care unit

Not all sepsis patients are treated in an intensive care unit. If the course is easier and the patient is stable, intensive medical treatment is often not necessary.

However, the medical team monitors the inflammation values as well as the vital parameters in order to be able to react immediately to changes. Antibiotics, fluids and oxygen can also be administered in the normal ward. Many sepsis patients spend some time in a normal ward of the hospital after their stay in the intensive care unit before they are discharged home or to a rehabilitation clinic for further treatment.

Discharge to home

After their stay in the clinic or rehabilitation facility, patients often return home after weeks of absence. In many cases, they are not yet able to perform activities of daily living as they did before the illness. In this case, you should discuss further treatment with your general practitioner.

It is conceivable, for example that you could jointly apply for inpatient rehabilitation, if you have not already done so. Outpatient physiotherapy and occupational therapy as well as psychological support are other ways to regain strength, endurance and resilience.