The results describe how nurses engaged with patient integrity at the end of life and how they tried their best to respect and maintain integrity in ICU care. When asked, they found it difficult to define integrity and to explicate what respecting integrity entails in the daily care of dying patients. They nonetheless repeatedly used notions associated with respect and patient-centred attitudes, such as: listening and being sensitive or they tried to describe good care.
We identified respecting patient integrity as a central theme and a fundamental precondition for the nurses to have integrity. This theme was built up by five categories: seeing the unique individual; sensitive to patient vulnerability; observant of patients’ physical and mental sphere; perceptive of patients’ religion and culture; and being respectful during patient encounters (Table 2).
Seeing the unique individual
The nurses often equated integrity with respecting the individual and described their strong commitment to carefully seeing the patient through the entire process, from ICU admission to the process of dying. Most dying patients in the ICU are sedated and not fully oriented to time and place. In such a situation, the nurses said that it was important not to lose sight of the patient as a unique person in order to maintain the integrity of the patient:
“Respecting the person, if any preferences or information about the person have been made known via relatives or the patient, then you have to have them in mind when treating the patient (Nurse 13).”
Some nurses mentioned that it was important to see the person as unique, also at the end of life in the ICU, because patients without a voice or the opportunity to communicate risk being left out, looked at or talked to, but not communicated with. This might threaten their integrity.
One way to show respect and to cater to the integrity of the individual patient is by focusing on good, safe care. Nurses often stressed that they must be responsive to the needs of the patients to maintain good, safe care at the end of life. Many nurses also stressed that they wanted patients to be awake and involved because the patients knew themselves best.
“You tried everything, you struggled with everything, but it wasn’t possible, and the treatment was discontinued. He was sedated, but our doctor turned off his sleep medicine in consultation with the relatives and told the patient that we had tried everything possible. He understood that these were his last moments. He was allowed to hug his family. Everyone came to him, but then he decided to be sedated again. (Nurse 12).”
The close nurse–patient relationship was often based on the nurse's willingness to get to know the patient. During conversations (which often took place on night shifts), nurses gathered information about patients’ values and beliefs on dying and death. These conversations helped the nurses to perceive the patient as a person and to preserve the integrity of the patient.
Furthermore, to maintain the integrity of the patient, nurses often tried to interpret how the patient experienced the relatives who visited and, if necessary, used medical reasons to create undisturbed time for the patient. According to the nurses, good care that maintains integrity includes understanding the situation of the patient and their relationships with their dear ones. Sometimes this involved the nurses stepping in to be the patient’s voice and explain the patient’s perspective to family members:
“We’re very used to dealing with different kinds of family situations, and it’s more a rule rather than the exception that families have problems … some patients even say that they [family members] are not welcome here before they arrive … But that’s something we’re seldom aware of (Nurse 8).”
Another nurse described situations when relatives unwanted by the patient visited:
“Sometimes there is a large family that would like to visit, but I [the nurse] have no idea what their relationships are like. The patient may not be able to say: “I don’t want to deal with that aunt”, and then she is standing at their bedside, for example. This could greatly violate the integrity of the patient, or what you say (Nurse 1).”
In situations like this the nurses were powerless because they did not know what the relationship was like between the patient and the visitor and could thus not fully conclude whether integrity was at risk.
Sensitive to patient vulnerability
Nurses saw patient vulnerability as related to the patient´s strong dependency on the staff when critically ill, their inability to meet their own basic needs and to preserve integrity. This extreme dependency was also related to being at the end of life and not being able to exercise autonomous choices directly. As a result, the nurses found that protecting patients from harm and reducing their vulnerability was important and a way to uphold integrity. Nurses mentioned both physical and emotional vulnerability and that the integrity of the patient was nearly obliterated in the ICU. One nurse said:
“I think it’s something that everyone has [integrity], more or less, but it’s something that is almost wiped out when you’re an ICU patient. They still possess their integrity of course, but the boundaries are very much … You can compare it to a yellow onion. Usually, you have several layers, and you may not want some people to come in contact with the outermost layer, while dear ones might be allowed to come closer. In the ICU as a patient you have to let go of integrity. People who don’t know you wash your genitals and you lie naked and are very exposed. Nevertheless, there’s some integrity, I think (Nurse 1).”
In some situations, nurses tried to adapt to the situation that emerged and acted as a moral agent on behalf of the patient. One nurse described a situation in which she acted resolutely to uphold integrity once she became aware of the patient’s powerlessness and dependency. In the situation she expressed a desire to protect the integrity of the patient during a clinical round since she sensed that the patient was exposed and thus acted on behalf of the patient:
“… I had a patient with a lot of hallucinations who became worried when encountering people [the patient] did not recognise. When the doctors came [to the patient’s bedside] … to give the staff a report in the evening, 15 people came in. There’s one person who reports to the 15 others [staff] who are listening. So I also drove them all out; it’s forbidden, 15 people can’t stand here, for the sake of the patient (Nurse 2).”
Nurses also described an awareness about the effects of being confined to bed, machines and tubes. Being involved in both medical and nursing care made nurses more familiar with the patient, mostly because they spend much more time with the patients than the doctors do, putting the nurses in a special situation from the perspective of integrity:
“…. I think that as an intensive care nurse I have much greater knowledge [of the patient´s needs during the ICU period] than the doctors. Mostly because I see the patient a lot more than the doctors do – I’m there all the time (Nurse 2).”
Our study indicates that the nurses spend a great deal of time protecting patients and guarding their vulnerability by creating good conditions for proper care that preserves integrity.
Observant of patients’ physical and mental spheres
Not knowing what would happen to them, being subject to others’ care decisions and having no control over the time or place during ICU stay easily triggered feelings of anxiety and stress in the patients, both physically and mentally. Several nurses noted that the design of the ICU possibly played an important role in affecting the integrity of patients. The nurses stated that they had to remember not expose patients to fellow patients when caring for them and thus safeguarding their personal sphere.
“Yes, but integrity is all about understanding and protecting their sphere, eliminating not only physical, but also mental and emotional, exposure (Nurse 5).”
Providing good care that preserved and maintained integrity could nevertheless be difficult at the ICU due to the prominence of the technical aspects of the care and care being performed in open spaces with little privacy.
The nurses mentioned various aspects of the integrity of patients that were challenged in typical high-tech care, such as being unable to choose the care provided, or the inability to cover parts of their bodies.
“There are various types of integrity, even in the patient. So I think integrity involves not exposing people … having all these cords and stuff on them somehow infringes on their body and sphere … (Nurse 2).”
Further, nurses strived to uphold integrity by being observant of the patient´s behaviour during nursing care, a task they found challenging. This included, for example, interpreting what patients experienced as positive, e.g. when changing their position.
“So it’s a challenge to find a balance that’s right for the patient, and I think you have to try to interpret their body language. And you have to try to interpret gestures and you have to try to interpret the response you get from the patient (Nurse 6).”
Most of the nurses considered themselves aware of the patient experience in managing their personal sphere in an effort to create continued good care that maintain integrity.
Perceptive of patients’ religion and culture
Culture and beliefs were another recurring theme that was identified in the analysis as affecting integrity. Due to migration and globalisation, the nurses increasingly encountered cultural issues involving faith and religious beliefs that they considered as central to the integrity of the dying patient and as having a significant impact on relatives. As a result, the nurses struggled to understand the patients' cultural values, preferences and beliefs. Respecting their integrity was a challenge if relatives and staff were unaware of the preferences of ICU patients at the end of life. Sometimes, taking action on the specific religious needs of patients for the sake of integrity was difficult because they were not identified until a relatively late stage in the process of dying. The nurses had consequently become more perceptive to cultural issues. For example, with the cessation of medical interventions, the nurses found that having a dialogue with relatives was essential to be sure that they had understood what was going to happen. In some cultures, ending treatment is challenging to accept:
“Well, it’s registered as life-sustaining care. The problem with this is, I believe … that we have many patients from various cultures, and in some cultures the next of kin request that the patient be given treatment, while the patient does not want [treatment]. That indeed makes the situation more complicated (Nurse 10).”
In such situations, nurses tried to show respect for the integrity of the patient by asking relatives about their culture and beliefs regarding death and dying. In some cultures, there is a strong sense of duty to look after ill family members, and the nurses were sometimes concerned about the integrity of the patient when relatives were active in their care, since the relatives and nurses have a divergent understanding of the concept of integrity. Also, there are cultural differences in terms of how many people visit the patient, which can be challenging because ICUs are not designed to receive large numbers of visitors. The following excerpt provides an example of this from a nurse who took care of a dying patient with a prominent social status in his cultural setting:
“A man from a different cultural context, a cultural clan leader of his family, suffered cardiac arrest, causing such severe injuries that he would not survive … and there were many relatives who wanted to come … the day he passed away there were so many relatives in the ICU that the police were also present … we had to close parts of the ward … neither the doctor nor I could be in the room because it was so full of people, so … we had to stand outside with the door … It was hard to protect his integrity; you just hoped he wanted to be part of what happened (Nurse 4).”
The handling of dead bodies is deeply ingrained in culture and reflects various beliefs and values. In some cultures, according to the nurses, before allowing family and friends to view the body, making the corpse more presentable is important for the patients’ integrity to be maintained. The nurses focused on being perceptive of the relatives’ wishes and values in terms of behaving professionally and were prepared to break rules to grant those wishes, for example:
“… they had one last anointing with a priest, and we broke a rule forbidding the use of lit candles in the hallways, but we allowed it because we thought it was important for the family … They went downtown and bought a suit and shoes, and they came back and dressed him. They played his favourite music. We helped and dressed him in this nice suit. So it was vastly different from what normally happens. But it felt very good afterwards. That we could help them, so the patient was not wearing a diaper under his suit. Because he had hated that (Nurse 1).”
Being respectful during patient encounters
The nurses often mentioned that having a professional and respectful encounter with dying ICU patients and relatives was one way to maintain the integrity of patients. When a decision to switch from life-sustaining treatment to palliative care was imminent, the situation was made easier if a good relationship had been established with both the patient and the family. A good relationship between the nurse and relatives was seen as contributing to increasing the integrity of the patient, according to the nurses, because it gave relatives a greater understanding of the patient´s situation. As relatives could vary in age, ranging from young children to the elderly, a major challenge mentioned was speaking with the patient’s dear ones and helping them understand that their loved one was near death. The following excerpt is a nurse’s description of just such an encounter with a patient’s young son:
“I had a great conversation with the 10-year-old son of a terribly ill father. So, we knew it just wasn't going to happen [that he would survive] … It was probably the hardest thing I said, that "No, I don't know. We are doing everything we can, but your dad is the sickest patient in the entire hospital”. It was extremely difficult to say that (Nurse 3).”
Being engaged in the patient and the family, and at the same time maintaining a calm professional manner where integrity was safeguarded, could sometimes be demanding. Nevertheless, nurses often stressed that open and honest dialogue was important for the dying patient as it allowed the patient to participate in their care, contributing to a respectful approach to their integrity.
“… it can be good, or it can also be bad that you get so close psychologically in some way … but one aspect is that you don’t withhold from the patient what is actually happening as well (Nurse 2).”
Not all patients have close relatives, and sometimes relatives are not available in the patient’s final days. According to nurses many patients are alone, with no contact with relatives, and their loneliness often makes feelings of vulnerability even more intense. This situation could often create an environment that threatened the integrity of the patient, as one nurse explained:
“You may have relatives; you may have many relatives and not just one. If they exist, and if they want to be there (Nurse 6).”
Mostly, relatives were seen as a positive factor for protection of integrity by the nurses when caring for the dying person. The relatives were viewed as a significant resource because they are often familiar with the earlier wishes and behaviour of the patient and can share that information and interpret the patient’s behaviour for the nurses. But sometimes the relatives were seen as having a negative influence on the integrity of the patient. Some nurses were concerned that relatives did not always know what the best interests of the dying person were and sometimes acted in their own interests, thus jeopardising the integrity of the patient. In such cases, the nurses must rely on what the family tell about the patient because many patients are unable to communicate their will. Nevertheless, the nurses also used their own assessment of the patient’s needs to determine how to best maintain the integrity of patients.
“Everyone is afraid of an undignified death. But then the question is how many people have enough knowledge to be able to decide what is good and what is not good for them. It’s clear that you have to respect what people say and what people want, but at the same time we must, of course, give them correct information so that they can base their decisions on the right foundation (Nurse 16).”
When the nurses felt that the relatives did not act in the best interest of the patient, it made it harder for them to protect the integrity of the patient, contributing to an already difficult situation. However, the nurses tried to follow the family’s will to the extent possible, as what happened would form their final memories of a close relative. The purpose of the nurses was to meet the relatives where they were and, in all situations, to make an effort to contribute to providing a good memory while maintaining the integrity of the patient.