The liver transplant
The narrator tells us:
“I was summoned together with one of my colleagues from the Resources Team to the ward where the male patient was hospitalised. The man had been hospitalised for a very long time, waiting for a liver transplant. For a long time he and his family were convinced that he was going to die. This was then replaced with a new perspective for his recovery. Thus, it had been a very long process with ups and downs depending on the perspectives for the transplant.
After a period of optimism and positive perspectives for the liver transplant, the patient for unknown reasons caught several consecutive infections, which prevented the transplant indefinitely. The doctors were confused and unable to explain why these infections occurred. The doctors failed to find a medical explanation.
Time passed by, and the patient began to change significantly – according to the experience of the professional staff. At times, the patient was withdrawn into himself and remote. It seemed difficult for the staff members to get in touch with him. In other periods he would act aggressively and externalise his frustrations.
The nurses and other staff members in the ward were actually shocked by these changes in the patient’s behaviour. Being unable to communicate with the patient, they all felt completely helpless and powerless in their approach to the patient, and consequently they called me and the Resources Team for a consultation. In this consultation it became clear to me from their report that according to their understanding and conviction, the patient´s reactions should be seen as culturally determined. Therefore, they were very confused and had no clue how to deal with the situation.
However, in addition to the confusion and helplessness, it also became clear that they were really annoyed with the patient’s day rhythm. He had this habit that he would sleep late in the morning, and this pattern didn’t fit very well with their procedures and routines around medicine distribution and meals etc.
After the consultation with the professional staff members, I paid a visit to the patient and talked with him for a long time. We were discussing all kinds of issues related to his uncertain situation – religious and spiritual questions as well as material questions about his wife, his family and their future after his death – if he was actually going to die. I could sense and hear, how he was emotionally full of all these existential and also practical concerns. No wonder, given his situation where he in reality didn’t know if he was going to live or die.
I also realised that he lacked basic information about the disease and the incomprehensible infections. None of the staff – be it doctors or nurses – ever tried to inform him. Nobody had talked or listened to him about all the uncertainty and troubling circumstances that affected his mental situation, state of mind and perhaps even his physical resistance.
After this first talk, I went back to the nurses and staff member and explained to them that the patient´s reactions had nothing to do with his ethnic and cultural background. He simply responded in a basic and ordinary human way of his anxiety and understandable concern – as most patients would do in his place, regardless of their background and origins. I pointed out that this was a relational matter where he – like other patients – would need their professional and clinical information as well as their relational and caring response on his anxiety and existential worries. His needs would be just like other patients´ needs.
My main point in this discussion was that this is about universal human reactions – but the expressions may be culturally conditional.
I also explained that the very simple reason why the patient was sleeping late in the morning was the fact that he worked nights as a taxi driver for ten years. Thus, he was used to sleeping in the mornings, and this pattern was deeply internalised. Once the nurses became aware of this explanation they could relax and find practical ways to adapt to his pattern.
The nurses and staff members were grateful for this conversation, and afterwards they actually took notice in their practice, so as to inform him that the doctors were very much in doubt as to why he kept having these infections. Even though they couldn’t take away the uncertainty and anxiety, they could treat him in an appreciative and equal way by expressing their own professional doubts to him. They realised that many of the challenges were actually due to their own fear to ask the wrong questions or to challenge some religious-cultural traditions etc. By doing so they actually treated the patient unequally.
We decided to keep in close touch with him. My colleague and I visited him several times as a kind of mediators and “bridge builders”. We also provided some personal support by one of our psychologists from the Resources Team for his wife…”
1. Identities of the actors in the situation
The narrator as a professional communicator and specialised mediator of culture shocks in the healthcare sector.
This incident has been communicated by a narrator, who is founder and coordinator of the special Resources Team, nowadays a large network of volunteers who offer special support to patients with an ethnic-cultural minority background when they are hospitalised in one of the Capital area hospitals. The Resources Team also provides guidance and supervision to the professional healthcare staff in order to strengthen the understanding and handling of intercultural encounters in the healthcare sector – especially in hospitals.
Besides the function as professional coordinator of the Resources Team, the narrator is also working as an Imam, doing services both in hospitals and in other communities. Thus, he is active in his Muslim faith and religious practice. He is also the vice chairman of the Islamic-Christian Study Centre. He is currently educating himself to be a prison and hospital Chaplain, following a training in UK. Thus, he will be the first trained professional spiritual adviser in DK.
Furthermore, he is also taking an active part in public debates and social media on integration, diversity, religious minorities – always from a humanist and equality perspective, for instance at the Danish website religion.dk. As an Imam, he has openly stated that faith is something that transcends our sexuality, our culture and our identity. Thus, it is possible from this point of view to be Muslim and gay at the same time. Faith doesn’t mean that you have to follow the sexual orientation of the majority, he claims.
He is in his early thirties, married and the father of 2 children.
The incident involves a number of people apart from the narrator:
The professional staff in the hospital and in the ward where the patient is staying, especially the nurses being around him around the clock. The number of staff members in the ward would probably be at least 10 people. Apart from the nurses, the staff would also include healthcare assistants, who usually are in close contact with the patients in daily life. In addition there are doctors, usually only being present at the daily ward rounds.
A male patient being in hospital for a long period of time, waiting for a liver transplant. The patient has Pakistani origins and migrated to Denmark around 20 years ago. He worked for at least 10 years as a taxi driver. He speaks and understands Danish sufficiently for everyday use. He may, however, have difficulties in understanding medical concepts and explanations.
The patient is a devout Muslim. In the light of his severe disease, he is very occupied with questions about death from the spiritual point of view. But at the same time, he is also occupied with death from the more practical and material point of view, especially what is going to happen to his family – wife and 3 teenage children.
Indirectly also the patient´s wife, who visits him as often as she can, works fulltime and being the only parent left to take care of the 3 teenage children at home. The wife speaks Danish very well, but like her husband, she is confused and anxious about his disease and the uncertain prospects of his recovery. However, is seems to be difficult for the professionals as well as the husband to communicate through the wife.
2. Context of the situation
The incident takes places in one of the major hospitals in the Copenhagen/Capital area. The incident is located in a surgery ward.
The narrator is in charge of the socalled Resources Team at the hospital and can be summoned in situations, where patients and relatives need a special religious care or in cases where staff members need advice and guidance in their relationship with patients and relatives in terms of cultural and religious questions and issues. Thus, the narrator is communicating the incident on behalf of the staff members who experienced the shock and called him for help – but also on behalf of the patient, who caused the shock.
3. Emotional reaction
From the perspective of the staff members:
The staff member reacted with contradictory and ambiguous feelings:
- A common feeling of inability to “read” and understand the patient´s behavioural “codes”.
- A common feeling of powerlessness and inability to carry out the usual professional procedures and methods.
- A common feeling of irritation and impatience with the lack of contact and incomprehensible communication.
From the perspective of the patient (and indirectly his wife):
The patient also reacted with contradictory and ambiguous feelings:
- Confusion, uncertainty, anxiety and acute distress and despair
- Isolation and loneliness
- Lack of care for basic spiritual and religious needs
- Lack of emotional and intellectual recognition from staff
- Embarrassment of being difficult and inconvenient for the staff
- Impatience, agitation and anger
4. Representations, values, norms, ideas, prejudice: The frame of references of the person who experienced the shock.
Professionalism in care and treatment.
The professional staff members share a strong professional culture to show the utmost professionalism in all care and treatment. Medical professionalism comes before anything else in this culture. But increasingly, over the years, awareness of patients´ mental and psychological wellness has been an integral part of the medical professionalism – at least on paper and regulations. As a part of this, intercultural communication and understanding is also a focus in hospitals and the healthcare sector generally. Thus, the staff members are concerned about this patient´s failure to thrive. To some extent, their professional self-understanding is jeopardised, because they are not in a position to comply with their own professional values. They are bewildered and unable to help the patient in this case.
Culturalisation and cultural determination as a normative approach.
Being short of medical and professional methodical grip and solutions, the staff members tend to find other, compensational explanations for their own confusion and helplessness in the situation. In doing so, they resort to cultural explanations, thus explaining the patient´s reactions as culturally determined and therefore out of professional reach. From their professional perspective, cultural determination is not a condescending attitude. On the contrary, cultural differences and culturally determined behavioor are seen as factual circumstances. In order to cope with such circumstances, one should achieve factual knowledge about different cultures and cultural behaviour. Cultural knowledge is considered to be much more important than communication skills. In summary, the culturalisation and cultural approach to the patient´s reactions could almost be described as a diagnostic process. Cultural determination would in this case rank as a kind of diagnosis.
Taboos about religious and spiritual practice.
The culturalisation process can also be seen as the result of other values about touching religious taboos. The staff members express their discomfort to articulate and talk about religious matters with the patient. To discuss religiosity and faith are particularly taboo, while the patient is a Muslim and seems to be very devout.
Religious practice is generally a private affair among Danes and not a matter for the public sphere – like in a hospital. The general norm would be that one shows his respect for other people’s religiosity by not talking about it. This standard also applies to the staff.
Those norms may perhaps be even more emphasized in the healthcare system, being strongly characterised by an empirical-scientific approach to human life and bodily issues. It is measurable facts about the body’s reactions that counts. Thus, a spiritual approach to the body and to life may seem strange and difficult to handle as part of the professional work.
5. What image emerges from the analysis of point 4 for the other group (neutral slightly negative, very negative, "stigmatised", positive, very positive, real, unreal) etc?
On this background, the staff members would regard the patient as difficult and strange because of:
Linguistic barriers: they cannot communicate in the usual way, ie in “plain” Danish.
Cultural differences: they perceive him as strange, partly because of his Pakistani origins and partly because of his Muslim background. They have an expectation that these ethnic-religious differences will automatically mean that he perceives everything differently than they do themselves as Danes. He would be part of another kind of cultural community with other values and norms.
Behavioural barriers: they are increasingly annoyed by his circadian rhythm which breaks with their daily procedures and apparently differ from other patients.
But despite the negative feelings, they also have empathy for his isolation and despair. This is the reason why they ask for the narrator’s advice and help.
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.
Values of commitment to religious and spiritual issues of life and death.
According to the narrator, religiousness and spiritual issues mean a lot to the patient. Especially in a situation with serious and potentially life-threatening illness, he has a great need to discuss such issues with peers who understand this need – or at least would show interest and responsiveness to his needs. From his point of view, he cannot satisfy this requirement by talking to the staff. Thus, he is increasingly isolated and tends to act in various desperate manners.
Patriarchal values of being head of the family.
According to the narrator, the patient considers himself to be the head of his family, and this position implies that he must be able to protect and take care of his wife and his children. Apparently this is not challenged by the fact that his wife is working fulltime in the Danish labour market – or the fact that she speaks Danish better than he does. In summary, a part of his despair is caused by the fact that he is not capable of filling his responsibilities as head of the family in the current situation. He also fears that he will not be able to protect his family in the future.
Values of equality in professional treatment
According to the narrator, the patient is aware that he is actually causing some trouble to the professional staff. However, from his perspective, they are not behaving professionally in his case. This is especially evident when he does not receive any information about his illness and the prognosis for his recovery. His experience is that due to his ethnic background, he is not treated equally compared to the Danish patients. He notices that the staff are communicating much more with the other patients, even though all patients have a right to be properly informed about their situation. Thus equality, recognition, respect are values which were actually violated in this incident.
7. Does the situation highlight any problem concerning the professional practice, or in general about the respect of cultural differences in intercultural situations?
Human reactions across cultures.
As expressed by the narrator in the end of the description, a main point would be that the patient´s reactions should be recognised as human reactions. But at the same time the narrator underlines that human reactions on common difficult situations like severe disease, may be culturally conditional, thereby being also culturally different.
The professionals pay attention to the emotional changes that the patient is undergoing. However, instead of being considerate, empathetic and sensitive about his difficult situation – using their professional knowledge – they give up and claim that it is a cultural reaction that they do not understand and would not be able to solve. As if he were an alien.
As a matter of fact, professionals would in general be much more observant about the patient´s mental situation and reactions. Nowadays, it is natural to understand and react to patient´s mental changes within the reference frame of anxiety, uncertainty, fear and insecurity. These values were also violated in the incident.
In summary: the professionals in this incident still use the old concept of culture, which in DK is called ”the descriptive concept of culture”. This concept is based on the early functionalist anthropology, according to which culture was homogeneous: all members of a nation share ideas, values and norms.
The professionals in this incident are automatically looking for a cultural explanation, when a patient has Pakistani origins.
Now the “complex concept of culture” is widely accepted in DK, according to which it is always necessary to perform an analysis of the specific situation to determine, whether and how cultural factors influence a situation instead of using generalisations concerning nationalities.
The incident shows how an outdated understanding of culture can be a barrier to adequate medical treatment. The notion that as a professional you have to have special knowledge about different countries and cultures in order to be able to communicate – is also outdated. This notion points to the need for training intercultural communicative methods and techniques. But it also reveals the need to emphasise that all communication is based on the ability to relate to the other person and his or her perspective in the situation.