Germs in the blood
The incident happened during the moving of a sick person by ambulance when I was working as a paramedic. It was my duty to fill out a questionnaire on the patient, taking down their name, age, insurance policy number and the reason (medical indication) for them being transported by an ambulance. This medical indication had to be communicated to the insurance company or without a recognised indication the patient would have had to pay €75 for the drive. This day a young, very friendly, yet pale and unwell-looking man was being transported. Our chat and the filling out of the questionnaire was very pleasant up to the point where I asked him, why he was being transported. Suddenly he made the situation very awkward by beating around the bush and becoming vague and evasive. I therefore told him that I did not want to interrogate him and that he just had to tell me something so that we could come up with some kind of medical indication together. Agonizingly he told me he had “an illness of the blood”. I asked him to specify, since that was no medically sound term or way of describing a condition. Worn out he said there were “germs in his blood”. I decided not to press him any further, even though “germs in the blood” was not a sound answer for the questionnaire either.
It made me wonder, since it had never happened before, if anybody else had reacted to the filling out of the questionnaire in this way. People would tell me the most intimate details or simply hand me their medical report. While his making the situation so awkward astonished me, I also felt that it was his duty to tell me his condition since I was a medical professional and I couldn’t let it be. When we arrived at the hospital I went up to the nurse and asked her if she knew of the patient’s condition. She answered without hesitation: “Oh him, he has AIDS.” After receiving this information, I was even more shocked that he would not tell me. Didn’t he know himself? Was AIDS still such a taboo that he wouldn’t even disclose it in a medical setting? How did he not trust me as paramedic to handle the situation in a way that was not uncomfortable for him?
1. Identities of the actors in the situation
The narrator of the incident is an Austrian-born, German-speaking male, who has been living in Vienna for his entire life. He identifies as heterosexual with politically liberal views. At the time of the incident he was twenty years old, a high-school graduate, working full-time as paramedic. His social background can be described as middle-class.
Patient being transported
The patient is male, presumably an Austrian national (he speaks German with no accent), in his 20s to 30s. He was pale looking and sickish when picked up for transportation. He is living in Vienna. Judging from the look of his apartment building, the area he is living in and his appearance he seems well off and presumably of a middle-class background.
There is no extensive information on the social identity of the patient. There can, therefore, only be speculation about the connection between the narrator and the patient, i.e. regarding sexual preference, political orientation or level of schooling. Both are male, Austrian and belong to a similar age category. The main difference between them are their roles i.e. a medical professional (who seems entitled to ask and know about the other person) and patient (who is expected to tell and share intimate details).
2. Context of the situation
A patient was being picked up in front of his house, an apartment building in Vienna, by an ambulance. The patient was to be transported to a hospital as part of a scheduled transport not an emergency ride. The vehicle was driven by one member of the paramedic team, while the other, the narrator, was riding inside with the patient. The drive was about 20 to 30 minutes long. In the beginning the narrator and the patient were making small talk and getting along quite fine. Then the narrator informed the patient that he had to ask him a couple of questions in order to fill out a questionnaire which was to be given to the insurance company. The completion of the questionnaire was mandatory. Questions included name, insurance policy and medical indication for being transported by the ambulance. Without a proper indication the patient would have had to pay €75 for the drive, with an indication the insurance company would pay.
Usually, patients being transported would just give the doctor’s letter to the paramedic. In his experience patients were not shy at all, but rather told him almost everything, even things he had never asked. He attributed that to the fact that he was a trained professional, a member of the medical system, thereby seen as reliable. Moreover, sharing medically relevant information is considered beneficial for treatment and general quality of care. It had never happened to the narrator before that answering the questionnaire was considered problematic.
AIDS treatment: history of prejudice and discrimination
Infection with HIV/AIDS is one of the most socially charged medical conditions, creating a broad spectrum of negative consequences for people infected with the virus. The term “social AIDS” points to the various social ramifications accompanying an HIV/AIDS diagnosis.
There is, unfortunately, a long ongoing history of people with HIV/AIDS being stigmatized and discriminated against in working life, but also in health care institutions. Patients report insults by medical staff, refusal of treatment as well as inferior treatment i.e. longer waiting hours. Even trained medical staff who work according to high hygiene requirements and know about myths of contagion may exhibit the view that caring for HIV/AIDS-patients is potentially dangerous.
3. Emotional reaction
The narrator was astonished and very curious at the same time. During the incident he also felt uncomfortable as this was an awkward situation.
4. Representations, values, norms, ideas, prejudice: The frame of references of the person who experienced the shock
- The patient made it impossible for the narrator to fulfil his task.
- Not fulfilling his tasks might be associated with fear of making a mistake; the culture of making mistakes within medicine / in hospital contexts not being a well-established one.
- Furthermore, the patient was challenging him as professional, by not following his requests, thereby not accepting his position and professional duties.
- Finally, the behaviour was unexpected because it almost never happens that patients withhold required information from paramedics. Consequently, the narrator was unsure of how to act and what to put on the form.
Value of information and disclosure:
- Especially in the health care sector disclosing information contributes to the quality of care but also protects the professionals working in this area (i.e. protocol for infectious diseases).
- The medical system, and the people working in it, exert control over the patients, generating a hierarchical system in which it is normal for one party to open up, while the other shares no personal information, but guides the actions of the former.
- The narrator further exhibits an orientation towards curiosity; This being associated with a necessary precondition for learning, gaining knowledge and making sense of the world.
- Value of Authenticity: The narrator felt that something was off because of the patient’s evasive and awkward behaviour.
Orientation towards order, structure and bureaucracy: The form needs to be completed even when an individual feels uncomfortable during this process. There should not be any individual change in the process. While pointing to the narrator’s values this also sheds light on the functioning of the Austrian medical system, which does not accept incomplete forms. There is no sidestepping of bureaucratic procedure.
Being helpful; orientation towards individual negotiation:
While completion of the form was mandatory, the narrator would have been happy to bend the rules a little or to format the patient’s answer to fit the criteria of medical indication. Despite this the patient did not play along and did not seem appreciative of his efforts and his offer to help was rejected.
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?
Holding back information, defensive, evasive, incomprehensible, yet friendly and likeable.
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
Fear of being discriminated against due to the stigma associated with AIDS:
- AIDS is still associated with groups of people considered high-risk such as homosexuals, drug users or people who are sexually adventurous (whatever that may mean). Thus, disclosing that one has AIDS might lead to being thought as belonging to one of these groups. On the one hand, membership in these groups is often associated with negative stereotypes and forms of discrimination, which the patient could try to avoid. On the other hand, he could also reject being labelled as a member of a specific group altogether.
- Stigma: Negative conversations on AIDS further identifies it as death sentence. People diagnosed with AIDS are viciously blamed to have brought on the disease themselves by engaging in risky behaviour. Lastly, the spectre of infectious diseases is painted, positioning AIDS patients as risk to other members of the society.
- The patient might have been trying to avoid a negative reaction by the paramedic. The incident appears to symbolically put the narrator on the side of those who are prejudiced – against homosexuals and against people with AIDS.
- The patient could also have been fearful of the information not remaining confidential, ensuing in being discriminated against by neighbours, colleagues or anyone who might find out: fear of social impact – especially whenever more people know.
The patient adheres to his right of privacy, of not having to disclaim personal matters to strangers. Maybe he also values his anonymity and does not want to have his name and his disease combined on a form. He could be skeptical about where the form will go and who will see it. This points to him not trusting the individual paramedic or the medical system to keep his information safe. The incident could also stand for the patient’s priority of exerting control over who he discloses information to in relation to a general openness regarding his condition.
He does not show an orientation towards hierarchy simply to following the paramedic’s request. It can be questioned, though, whether he perceives the paramedic to be an authority figure.
7. Does the situation highlight any problem concerning the professional practice, or in general about the respect of cultural differences in intercultural situations?
- How can patients’ information really be protected especially when personal data and data on disease is linked, as is common procedure within the Austrian medical and insurance system?
- Is it safe to tell patients that their information will remain confidential?
- How can patients reasonable concern for the protection of their data be aligned with willingness to share information relevant to quality of care and protection of health care professionals?
Complexity of insurance system
- There are bureaucratic processes in place for accounting, which are not likely to be changed or maybe impossible to change and adapted to individual patient needs.
- Negative effects of bureaucratic processes on individualised approaches and treatment: little wiggle room for professionals who try to accommodate individual needs
Combating the stigma of HIV/AIDS
- Alleviating people’s suffering due to irrational fear and negative stereotypes associated with HIV/AIDS.
- Professionals addressing the social ramifications of certain medical conditions, bearing in mind general prejudice and discrimination patients might face.
Training in communication and establishing trust for paramedics
- Professionals reflecting on the very hierarchical nature of the care/treatment-process and their expectation that patients easily give away control