End of life
A woman was in ITU (Intensive Care Unit in acute hospital) following a heart attack. Her partner of 2 decades was with her and distraught. The healthcare team explained that the woman would die when the machines were turned off. I spent an hour or so with him, sometimes at the bedside, sometimes in a private room. The staff encouraged him to leave the bedside while they turned the machines off. He found this time very difficult. I then returned to the bedside with him, and his partner took her last breath almost immediately. She was still surrounded by machines and charts, on a busy ward, and her partner had very little experience of this environment. I encouraged him to hold her hand as he was hesitating. He turned to me and asked, ‘Is it ok for me to kiss her on the lips?’ I was so shocked and said that he didn’t need to ask. He felt so disempowered and alienated by the environment.
1. Identities of the actors in the situation
Narrator: White British woman, Church of England priest but was not born into a particularly Christian family background. Worked in a hospital environment for 8 years, working with people and a huge part of her job is end of life care and is used to the hospital/ward landscape of tubes, and beds and relatives coping in different ways. Aged 46 at time of incident.
Husband of the patient: Male, White British, late 50’s/early 60’s, working, Church of England but not particularly religious.
2. Context of the situation
The situation takes place in the Intensive Care Unit, which is a very busy department of the hospital, limited number of patients but lots of staff, machines, monitoring noises, emergency care, sterile environment to avoid infection, patients critically ill, lots of tubes and lifesaving equipment, staff dressed in formal clothing.
3. Emotional reaction
The narrator was shocked that the husband needed permission to kiss his wife, like she didn’t belong to him anymore. Sadness that the husband was so unprepared for the death of his wife and he was obviously so alien to the whole hospital setting so was confused as to what was going on. Having to deal with the sad news as well as what he was and wasn’t able to do.
4. Representations, values, norms, ideas, prejudice: The frame of references of the person who experienced the shock.
Religion and death
Even if we know that we are eventually going to die each person can have a different way of approaching this concept, some people decide not to think about it unless they are confronted to it, others find some answers in spiritual beliefs, etc.…
The narrator does not come from a religious family but she decided to become a priest and to work during the past 8 years supporting patients and their families on the end of life care. The death seems to be a familiar concept for her and we can think that she feels comfortable accepting the end of life and the proposed answer given by her faith.
Working with death
As we mentioned before the narrator has been working in the same hospital for many years and this place became a natural habitat for her. The patients and their relatives perceive this space as visitor or foreigners and do not know how to behave, which are the rules what they can or cannot do. To explain the shock of the narrator we can also think about this “natural” environment for her and the obvious ways to behave, to say good bye to a love one, and holding hands, kissing or touching the dead body of a loved one is part of this ritual. The relatives are allowed to show and express feelings without asking permission for it.
5. What image emerges from the analysis of point 4 for the other group (neutral slightly negative, very negative, "stigmatized", positive, very positive, real, unreal) etc?
Not positive or negative, more empathy that he is so confused and upset at the situation and there is a sense of trying to protect him as it is clear that he is in an alien atmosphere and needs guidance and support.
6. Representations, values, norms, prejudice: The frame of references of the person or group that is causing the shock / that caused the shock in the narrator.
The relative of the patient seems to be under the shock of the unexpected death of his companion. As the incident was described we can understand that the time passed in the hospital wasn’t enough as a transition to accept or realise that coming death. This short time between the heart attack and the recommendation of the medical staff of stopping the artificial support life (“unplugged”) didn’t allowed the husband to process what was going on and might have been perceived as confusion and incertitude.
This situation might of trigger different threats for the man: first a loss of autonomy when the medical staff decided that they couldn’t do more for the wife and that it was time to unplugged her; then being confronted to solitude after 20 years of common life with his loved one; dealing with an unknown situation on how to face death and the pain related to it.
Death in a medicalized environment
As we mentioned in question 4 the codes of the ICU unit might not been comprehensive for the husband. This unnatural environment surrounded by machines, monitoring noises, emergency care material, sterile environment to avoid infection, patients critically ill, lots of tubes and lifesaving equipment, staff dressed in formal clothing might have a high impact on the stress of the patient. It is in this unnatural situation that he is asked to say good bye to his wife. The atmosphere or the mood set by the ICU might of cause the confusion on how he could behave.
It is recommended that the family waits outside when taking a patient off a life support machine as there could be distressing scenes that follow and it is not always the case that the patient just passes away peacefully.
7. Does the situation highlight any problem concerning the professional practice, or in general about the respect of cultural differences in intercultural situations?
The staff wanted to do everything right, e.g. music whilst they turned the machine off, they wanted to protect him and do it without him but he felt he was being excluded. For some this would have worked, but in other situations the partner needs to be involved even if shocking.
Reinforced that for hospital staff the environment is a workplace, but for anyone else, that the hospital environment is SO very different from normal everyday life and patients need extra support at end of life.
The staff can also anticipate that each person reacts different to death and they have to be ready to hear all kind of questions from the part of the relatives as they might be in shock or confuse about the procedure.