Dehumanising the patient

This category was built on three substantive codes:

1. “Not finding out where the patient is”

According to the informants, AHC could signify several things:

Not to imagine what the patient is going through: You have to imagine, and understand the things you say; what are the consequences…what do you do and what will be the consequences. How will it be in this situation? For sometimes an act can be rather innocent, and in some situations, [certain] behaviour can be completely catastrophic.

To belittle a patient's problem by comparing with other patient's problems: Yes, to listen to what the other is talking about…to be focused on the one in front of you. Yes, seriously, even [when you] think that's a silly little thing compared to the death [a dying person] …in the next room.

To be judgmental: If someone is admitted, there are not so many of them here but, gipsies…Have you locked away your handbag? Where is my purse? They are judged awfully hard.

Lack of cultural awareness:

Expecting that patients with a foreign background live by and accept Swedish norms like in the following example might also render in AHC, according to one informant who had had to console a crying patient after an examination. When she came it was a shock for her [that it was a male gynaecologist] and she told them that…she was going to see a female [gynaecologist] and then they had answered her that well but you can't always get…what you ask for…if you seek help at such short notice then you have to take what you can get. Everything was supposed to be quick and she just felt that she was just…trouble for them… And she was…so sad afterwards. 2. “Saying things that are very abusive”According to the informants, AHC can be something you say or the way you say it; a few words may turn a situation into a disaster for a patient.

One example: a patient with cancer was constantly throwing up. Staff had provided her with bags and bowls but nothing helped, repeatedly there was vomit everywhere: on the bedside table, in the bed and all over her things. Staff thought that she was capable of using the bags and bowls, and discussed between them if she did it on purpose. There were sighs among the staff, sometimes even audible to the patient, according to the informant. One day, a staff member asked the patient if she was going to continue like this when she would go home.

Another informant remembered her own first delivery: the baby's heart sounds were getting worse, the suction cup did not work, she had intravenous fluids running in both arms and she was screaming in pain. Then the doctor came up to her and said, ‘Are we going to cooperate for hell's sake!’ Afterwards she felt abused and despite her longing for another child it took years before she decided to have a second baby.

Informants said that they used to think that AHC had to be a major thing, but that they now realised that AHC was often an unexpectedly small thing, and that a good situation could turn into a disaster because of a small thing. As aforementioned, the sex of the examiner might sometimes be crucial for the patient for religious or other reasons, while some staff members may consider it a small thing.

3. “They must have felt very vulnerable”

An informant told us about a patient that she had known for a long time whom she thought of as extremely nervous and inadequate. The patient had told her that she was afraid of hospitals. Later she also told her that she had been forced to go through a gynaecological examination when she was a child, on suspicion that she had been sexually abused by or involved with an older boy. … she [the mother] only said, ‘now we are going to town’. And then they brought her to the gynaecological ward and then they held her tightly and she was examined. And she screamed and she kicked and she was struggling with them. And she said that she can't forget this …it is stuck with her that…that they pushed her down and forced her, and so on. So I think that's a typical example of abuse in the health care and for ten years I've been wondering what's wrong with this girl.

Power and power imbalance in relation to AHC was mentioned in several ways, for example, the exposed position a woman has during a gynaecological examination or the patients’ dependency on staff's willingness to help and to be gentle to them: “You are not your own master then.”

One informant was also pondering about her ability to really understand what it meant to be dependent and exposed as a patient: …I still think that I can feel…that you can imagine…the dependency…get an understanding about how it is…I can never understand, but I can feel humble…I can share it…I can have respect and understand that she has something else with her that I haven't got.

AHC could also mean that advantage is taken of the power inherent of one's position, symbolised by, for example, the uniforms: “…when you put on your work clothes, then you have a kind of…how to say it, a power position.”

Unacceptable: you are bound to act!

The informants were prone to positioning themselves against AHC by, for example, talking about how they had (re)acted against AHC, and that it could be done in a good way, “…but then I think you have an obligation… to rebuke. In a loving way.” They also emphasised that the bystander had a very important role in noticing and stopping or preventing AHC, “because sometimes I think that it is the person who stands by…maybe more often senses when something goes wrong than the person who is [active] in the situation”.

There were different strategies for intervening against potentially abusive situations.

One informant was concerned about open doors and meant that staff leaving doors open jeopardised a patient's integrity. She was struggling with this problem: …it is an indication that you probably can't miss [with laughter in her voice]. No, but sometimes when you have been sitting in the auxiliaries’ expedition, there is just a sliding door…there are patients sitting right outside and then I close the door…or when you…hear…that they…are in a room talking and so on. Close the doors…and I close that door [the sliding door] and then it's open again! And I close it.

Practical arrangements for preventing AHC were discussed: …there are more discussions about this [now]. About…for example, open the door into a room where a patient is and…how to place patients in a room, and how many really have to come into a room. So, these kinds of questions.

It was also put forward that small talks over a cup of coffee could raise awareness about AHC among staff, but to talk to the patient, either before or after AHC had occurred, was seldom mentioned as an intervention. One informant interpreted this particular kind of silence as fear: It must be some kind of …fear to…realise that you are not perfect. Maybe! …Of course if you ask then you have to be prepared…to do something about what the patient might bring up.

In other words, asking a patient about AHC might force staff to take action, for example, towards a colleague. Some informants stressed the importance of being earnest in such situations and talk directly to the staff involved as soon as possible. This was what the informant did who told us about the patient who expected to be examined by a female gynaecologist. When she had comforted the patient she asked her if she could talk to the staff member who had examined her, and if the patient wanted to participate in such a meeting. The patient declined …I was allowed to tell…how she had experienced it…I was so disturbed by what she told me. So I felt that I had to find out if that was how it had happened. But he had not really experienced it that way…

Furthermore, there was a possibility to report upwards in the hierarchy: “I would not hesitate to…contact… [silence] a foreman, my bosses [if a patient was abused].” And there was a consensus on having an open climate at the clinic, and that it was important to be made aware when a patient was abused. Speaking up against AHC was considered an option for most informants: That you say,’ you can't behave like that’. So I believe that…people would tell you…I believe that there are few who would not dare to speak up…I believe they would speak to a colleague.

Ubiquitous

AHC was often described in a broad sense as something that can happen to anyone at any age: patients, staff, relatives and friends to the patient. Anybody can become a victim or an agent (actor or bystander) of AHC: “…we are abusing each other…all the way down to the patient…”

AHC was also interpreted as staff being abusive against other staff, for instance, by making remarks in a harsh way. It was also pointed out that a patient who had witnessed staff treating each other badly might feel hesitant to ask even important questions for their own sake.

One abusive situation between members of staff described as common was when a midwife called for a doctor and that doctor called for another doctor, and the two of them did not involve the midwife when they discussed the patient.

It was also hypothesised that staff experiencing abuse from other staff might subconsciously take it out on someone else: “…if I am abused then I will look for someone…that…I have power over.” And that someone is likely to be a patient: “…it is easier to abuse when there is some kind of power relation… and when there is a kind of malady between us.”

However, patients abused by staff were considered the most serious kind of AHC: “…the most serious is if we, the staff…abuse patients or relatives. That is another situation I believe.”

Informants also agreed that patients were the most common victims of AHC, and that if patients abused staff it should be understood differently: “Because there might be…patients who abuse staff in many ways, so to say. But on the other hand, they are in another position…worry can turn you…rather nasty, really.”

Unintentional

AHC was believed to be a common experience among patients. Most informants said that AHC was usually unintentional on behalf of the staff, and that often involved staff was not even aware that it had happened. “…they are not aware, surely. But then I have to…become aware of how people might experience what I do.”

A variety of explanations of the occurrence of AHC were brought forward, and it was pointed out several times that AHC did not come from evilness in staff members, but rather from a lack of consideration and empathy.

Not being reflective could result in a routine manner or performance. One example given was that of an authority, like the gynaecologist who was often believed to be under time restraints, who simply follows an old habit: focusing on getting things done instead of on the patient. “…it's so easy to follow… the same footsteps all the time…”

Another example of unintentional AHC was when staff members made jokes among themselves about, for example, someone being fat, and other staff members were laughing without reflecting on what they were laughing at, or if they ought to put an end to it.

It was also brought forward that unawareness of AHC could be due to inadequate communication skills, for example, if staff was not sensible enough to read the patient's body language.

The uniqueness in each and everyone's characters was appreciated, but sometimes, if a colleague was known to be harsh without meaning it or even noticing it herself or himself, there was a moral conflict. A bystanding staff member would in such a situation understand that the patient might feel abused, and at the same time know that the ‘harsh’ staff member did not mean to abuse the patient. This was considered a difficult situation, but as one informant concluded …it's about personality, too, so it's really difficult to know how to tackle it. It's interesting that people are different, but on the other hand you don't want those differences to befall the patients so that they feel abused, or maltreated.

Relative

The informants were provoked by the word ‘abuse’ in AHC, and prone to take a defending position against it. They thought of ‘abuse’ (kränkning in Swedish) as a very strong word, that was sometimes used too often and in an inappropriate way. The informants thought that, especially in the rest of the society (outside the hospital), the word ‘abuse’ had suffered inflation. “I think that ‘abuse’ may be a tough word…It's a worn out word or a word that is used incorrectly…”

Informants agreed that AHC was a difficult concept to define. On the one hand, AHC was considered a strong word, and yet AHC could be a small thing. “…there is no such…scientific quantitative concept [saying] that this is abuse.”

The wording seemed important to the informants and a more neutral word for AHC was desired by some of the informants, for example (negative) encounters (bemötande in Swedish).

AHC was considered a personal experience, and it was expressed that patients were more or less vulnerable to this experience. It was also brought forward that there were reasonable experiences that made some patients more vulnerable to AHC than others, for example, through a history of abuse.

Core category

The three categories ‘Dehumanising the patient’, ‘unacceptable: you are bound to act!’ and ‘ubiquitous’ are strongly linked to each other in many ways, not the least because of their potentially patient protective components. The category ‘Dehumanising the patient’ implies not being seen as a human being, stripped of human value. The codes that filled out this category were characterised by moral imagination and respect for the patient's situation. The informants showed great insight into patients’ vulnerability and their own responsibility in relation to AHC. The fact that the informants gave several detailed examples of AHC underlined their emotional engagement. This engagement was a strong reason for staff to adopt a clear position against AHC, expressed in the category ‘unacceptable: you are bound to act!’ It was also made clear that acting against AHC was beneficial not only for the patient but also for staff: “…that's what we really ought to do [talk to each other when we think a patient might feel abused] …we take responsibility for each other that way.”

The category ‘ubiquitous’, indicated that the informants were now more prone to recognise AHC. This openness could be seen as a mediator that enabled staff to talk about AHC, which probably contributed to a milieu where staff felt some pressure to also act against AHC. However, there were contradictions in the staff's definitions of AHC. To claim that AHC was ‘unintentional’ was a way to describe a fact, and at the same time make AHC trivial. Likewise, the discussion that rendered a ‘relative’ definition of AHC could be seen as a diversion from a topic that provoked awkward feelings. Both of these categories could be used to legitimise AHC.