Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study

In the analysis, four themes elucidating barriers to and facilitators of an ethical encounter in ABC emerged: (1) Coping with the impact of workplace demands; (2) Interacting by dialogue and communication; (3) Experiencing involvement in the provision of ABC; and (4) Adapting to good care and comfort (Table 3).

Table 3 Themes with examples of barriers and facilitatiors of ethical encounter

Lack of resources, organisational factors and the dilemma of not having enough time were frequently mentioned as being obstacles to ethical encounters. This affected residents’ sense of personal autonomy and became a barrier to their involvement in decision-making and in receiving person-centered care.

The organisation of the nursing home presented several demands that challenged ethical encounters. ANs claimed they had so many practical tasks to fulfil in a short time that it was difficult to give residents the necessary attention. ANs were constantly hurrying, perceiving this to be a considerable concern, as someone was always waiting. This prevented them from joining residents’ conversations and thwarted their ambitions to make residents feel seen. It hindered their aspirations to take residents out for much-wanted walks, as ANs needed to follow strict routines. ANs were often interrupted by alarms and telephone calls, which made them forget details in ABC. Further, they lacked time to read the nursing notes to learn about changes in residents’ condition. In all, they found this created an irritable atmosphere among residents and a personal stress of conscience. They feared unexpected events, i.e., falls, which forced them to re-schedule the routines, resulting in increased annoyance among residents, who were prevented from obtaining expected and demanded help. To facilitate communication with colleagues and to hear cries from other residents, ANs claimed it was necessary to keep the doors open while helping residents with personal hygiene. Hurrying entailed them standing next to residents who were using the toilet, transferring them through the room while positioned in lifting aid equipment, and applying double incontinence pads to save time when changing them. They preferred residents to sit on the toilet while showering, as the passing of stools during the shower was time-saving. When asked about the convenience of this, an AN answered:

Interviewer: Why does she sit on the toilet to shower? AN: It is easier if she sits on the toilet while we shower her. Interviewer: Isn’t it unusual to sit on the toilet and shower?AN: I don’t know (laughs) I can’t answer that. They are old routines or something, maybe the occupational therapist has said it? I don’t understand what is right or wrong. (Obervation 31)

In addition to insufficient time resources, ANs mentioned that staffing levels had been cut, that the nursing home manager did not understand the relational aspects of their work, nor had they listened to their views concerning the need to expand staffing. The manager also expected ANs to be flexible and work as temporary replacement for other units. ANs critisized this, as they did not know these residents well enough to provide safe, knowledgeable and personalised care. In summary, organisational obstacles drained ANs’ joy in their work, prolonged their recovery after hard working days, and urged some to seek other types of work. One AN, working an evening shift, expressed her feelings in this way:

Now when it is such nice weather in the evenings … instead of taking someone out for a walk to get some fresh air, we don’t have time. We just run around. I go to work happy, but come home with a bad conscience, I can’t give these people what they deserve. You can’t touch and hug or brush teeth as you should and if something unexpected happens, such as someone vomits, the other seven residents will also suffer. I am stressed almost to death. At some point we will all end up in these places, but they don’t want to improve it. I don’t want to live like this, I really don’t! (Observation 18)

Residents pitied ANs, who were always perceived to be in a hurry. They, too, found that time pressures and low staffing levels deteriorate ABC and negatively affect the atmosphere. They claimed that the routine of showering once a week is insufficient, but hesitated to disturb busy ANs with requests for additional help. However, the situation made them fear eventually needing an increased level of ABC.

Conversely, ANs suffered from lack of time and low staffing levels, as this prevented them from being attentive, meticulous and empathetic in ABC encounters. They tried to solve these problems by planning their time, i.e., preparing sandwiches for the evening in the afternoon, to release time for unexpected needs during the evening. This planning was constantly ongoing within mutual collaboration, where ANs agreed on how to work and helped each other when needed. Further, ANs independently redistributed staff resources when residents were about to die to secure extra attentiveness from ANs who were most familiar with them. When no residents had special needs, their ambition was to consciously distribute resources equally among all residents.

Residents observed ANs’ situation with understanding, referring to their heavy workload. They expressed awareness of all residents’ similar needs of ABC, particularly during mornings and evenings. When possible, residents with fewer needs of ABC helped other residents, and did what they could to provide for themselves, i.e., making their beds. They did this not only to be active, but also to facilitate the ANs’ situation.

Interacting by dialogue and communication

The daily dialogue between residents and ANs during ABC could pose barriers to ethical encounters, for instance, when ANs spoke to each other without including residents. These conversations concerned their ongoing working tasks or the planning of work with other residents. They also included derogatory comments about the residents’ bodily constitution, ridiculing or scoffing at them, laughing at their expense, and questioning their habits. They sometimes made derogatory comments about the residents’ significant others. When ANs were observed alone with residents, communication was hampered when residents spoke without receiving an adequate response, here illustrated in their communication after a shower:

AN: Picks up the large towel and dries hair, face, and armpits. She asks: Do you feel dry now? The resident answers: What? and continues the story about rapes in 1940s (name of war-torn city). She says: I got through it. AN answers: Hhmm. The resident closes their eyes. AN squats and pulls on knee high socks. The resident continues their her story: I can honestly say that I pulled through it, I was never raped, but most were. They never told me, but I knew it happened, even though I was only a child. AN takes off her apron, opens the door and stuffs it into the waste basket just outside, saying: I’ll get a jumper. (Observation 20)

ABC was rarely preceded by questions regarding residents’ perceived needs, nor questions about their preferences. If questions preceded actions, residents were not always given time to answer before the action was performed. ABC was defined by ANs commanding residents what to do, when to bend forward or lift an arm. Communication regarding the next step in the ABC-process was lacking, as was information about how long residents could expect to wait for help. ANs lied to residents by not fulfilling promises, i.e., when an AN promised a resident they would wash her genitals in the shower but immediately informed her colleague that they would not, as this had already been done in bed before the shower. Further, ANs and residents argued about drugs, i.e., concerning whether or not it was time to take medication for bowel function, or concerning the choice of clothes, where ANs neglected residents’ expressed preferences.

ANs’ communication with residents was sometimes harsh and dismissive, and they appeared to be annoyed. An example of this was when a resident asked to stay up late to watch a programme on TV but was told that this could just as well be done while lying in bed. In interviews, residents commented that reprimands and negative attitudes from ANs were humiliating, while ANs claimed to be aware that their negative attitudes in communication caused anxiety for the residents.

Conversely, a polite and mutual relationship between residents and ANs facilitated an ethical encounter in ABC. For example, when ANs posed questions about residents’ condition and asked whether they wanted help, or when asking for residents’ preferences in ABC before acting, followed by clear instructions on how they could collaborate. Here, ANs carefully informed residents of planned actions, and included opportunities for shared decision-making.

In interviews, ANs emphasised the need for having relaxed conversations with residents to strengthen their mutual relationship. They described intimate moments characterised by trust and confidentiality as a privilege in their work. Mutual relationships were observed when residents and ANs performed confidential conversations on topics chosen by the residents. This was strengthened when a warm and lighthearted conversational tone with humourous elements created a dialogue where the residents were listened to. Smiles and eye-contact occurred frequently, as did ANs’ encouragement when residents performed actions they perceived to be difficult.

ANs were seen to comfort residents when they expressed sadness. They equalised their relationship with residents by paying attention to new haircuts, or joking about their own bodily signs of ageing. ANs communicated empathy for the residents, and demonstrated an interest in their feelings by asking whether performed actions were satisfactory. In mealtime situations, ANs facilitated residents’ communication by including silent residents. This was claimed to be important for making residents happy. An AN expressed her devotion for communication with residents in this way:

This is the world’s best job!! I say this to all our students. In what other place can you laugh so much, sing, dance, tell cheeky stories? You’ve got the lot…all these positives you get with this job. (Observation 9)

Within this facilitating dialogue, residents performed as active and equal partners, who announced their preferences in ABC, told ANs when to stop an activity and clearly announced discontentment with the performance of ABC. They encouraged and praised ANs’ work.

Experiencing involvement in the provision of ABC

Situations preventing residents from involvement in ABC were observed. This hindered ethical encounters, for instance, when ANs knocked on residents’ doors without awaiting an answer before entering. Likewise, when residents aimed to act but were preceded by quicker ANs, or when residents refused food or medications but were fed anyway, not knowing that the drugs were hidden within the food. This also occurred when residents had decided what clothes to wear but were dressed in other garments chosen by ANs. Prevention of involvement could entail physical inconvenience to residents, here exemplified by a resident getting helped to get dressed:

AN: I couldn’t find any cotton knickers/…/ she squats, puts on a pair of incontinence pants, pulls them up. /… / She supports the resident who gets up. AN pulls up the pants. Resident: I can’t wear these, they are too tight. AN: I can cut them open a bit, there aren’t any others. She pulls up the skirt and fastens it. Resident: It’s a bit tight. She tugs at the pants, saying: These aren’t right, they’re way too small. AN: Yes. The resident goes out from the toilet, towards the armchair. She says: I can’t sit down, that’s how tight they are. She sits down. AN brushes her hair /… / Resident: You must ask if they have any underwear for me. AN answers: Yes. AN goes in the bathroom and comes back with the upper set of false teeth. A: Here are your teeth. (Observation 20)

Residents expressed their lack of influence on decisions about meals, as their desired food was not always available. Shower routines entailed that residents who declined a planned shower had to accept that it would be postponed until next week. Likewise, residents being prepared to shower had to accept it was cancelled altogether when unexpected events forced ANs to re-schedule their tasks.

The residents’ approach to this was cautious. They accepted their inhibited involvement, did not remind ANs when they forgot certain personal routines, such as applying deodorant. This cautiousness is exemplified by a resident who experienced tenderness in her genitals, wishing ANs to arrange her trousers loosely:

Resident: If there is something that is sitting against (the groin), it hurts. You have to take your trousers and try to shape them so they don’t hurt you, but they are all different too, the staff. Some are careful and gentle, but some are not… Interviewer: Do you say anything? Resident: No /… / some won’t believe it hurts (Observation 7).

Residents also refrained from being involved by transferring decisions to ANs, such as a resident who wanted her stoma bag emptied but instead accepted keeping it full, as the AN disagreed with the need. Residents claimed that their approach depended on their unwillingness to be a burden to ANs.

Again, situations characterised by resident involvement may be described as those that facilitate an ethical encounter in ABC. This was observed when residents decided how to perform ABC-situations, according to who does what, and what soaps and lotions to use. ANs claimed to respect residents’ desires to accomplish certain moments independently, although difficult and time consuming, as resident involvement was considered important and beneficial. Thus, they strived to preserve their abilities and skills for as long as possible. To further facilitate residents’ involvement, ANs asked residents to judge the water temperature when showering, and were willing to help when residents wanted to make appointments with the hairdresser or podiatrist.

Residents’ involvement comprised performing activities in ABC, doing all that they still could, such as holding a paralysed arm during transmissions. They claimed to enjoy making decisions for themselves, concerning what to wear and when to attend social events. Involvement provided them with a feeling of luxury, here described by a resident who had chosen to join a tour in a carriage behind a bicycle:

Resident: I can tell you, it was lovely! We were by the pool where we used to bathe, many times. It was lovely! Interviewer: How did it feel to sit there? Resident: It was nice… You just can’t understand it is real. It just feels good to be out in nature… when you used to cycle so much before. (Observation 12)

An ethical encounter in ABC could also be facilitated when ANs inhibited residents’ involvement. For instance, residents who found it difficult to choose what to wear gratefully transferred this task to ANs. Another way of inhibiting residents’ involvement positively was when ANs found time to aid residents with minor help needs, to make them feel cared for and a bit spoiled.

Adapting to good care and comfort

ANs’ lack of adaption to good care challenged an ethical encounter in ABC. Even long after residents’ admission to the nursing home, ANs lacked knowledge of residents’ preferences, finding it difficult to interpret their behaviour. This was exemplified by an AN, commenting on a resident:

AN: I think I had worked here for one or two weeks before I realised that [Resident] could actually talk, because she didn’t say a word. I like thought she just couldn’t speak. (Observation 16)

ANs’ attitudes could also entail the perception that residents lacked an opinion of their own, i.e., concerning what to wear, thus it was unnecessary to ask them about such things. Alternatively, it urged residents to continuously repeat information about their preferences. ANs’ ignorance was observed when residents’ health status changed more rapidly. For instance, in an observation of a dying resident who was semi-conscious, incessantly groaning and calling out from her bed from the early morning, the ANs assumed this resident was about to die soon but did not prioritise contacting a nurse until their workload was expected to lighten soon after lunch. Nor did they search for knowledge about the resident in the nursing notes. Instead, they woke her up to wash her, administrate medicines orally, and feed her, which resulted in the resident vomiting. Afterwards, they left her alone, expecting her to press the alarm button if needed. Other examples of lacking adaption were when ANs washed residents with cold washcloths or initiated ABC-activities on residents who were still asleep. Further, when they omitted to wipe the bottom of residents who had micturated while showering. Sometimes, ANs were heavy-handed and did not adapt their behaviour until residents groaned or gasped. Lack of attentive adaption also negatively affected residents who had limited need of ABC, here exemplified by a resident:

Resident: They completely forgot me. Because I am not that unwell, I am actually here because I’m just old and they forgot to come and say anything. I didn’t know what to do, I was upset that they never came… Yeah, you feel a bit worthless when they never come. (Observation 32)

Residents appeared to facilitate ANs’ lack of adaption by not opposing them in their ABC-activities. If the shower water was too hot, they claimed that they reminded themselves that their main goal is to become clean. Moreover, residents described a voluntary adaption to the routines, i.e., by going to bed early, while plenty of help was available in the ward, and by accepting prolonged waiting times when ANs were busy helping others.

Conversely, an ethical encounter in ABC situations was facilitated when ANs knew how to provide good care, were aware of residents’ preferences and abilities, and compliantly adapted their provision of ABC, for instance, when residents performed certain moments independently, such as eating or brushing teeth, and ANs calmly awaited the moment of further needed help, or when they efficiently passed soaped washcloths to residents who independently washed easily reached body parts in the shower. Adaption also included ANs altering their actions during ongoing ABC, i.e., by fetching alternative clothes that the residents asked for. Thus, they used their knowledge to adaptively collaborate with residents.

ANs’ adaption comprised attentiveness to variations in residents’ daily status, such as preventing accidents by reaching out a hand to residents who wobbled, or steadying residents’ feet during transmission. ANs underlined a need to attentively and efficiently support residents’ wishes by interpreting their varying moods. Thus, they noticed signs of stiffness, chills, tiredness or loneliness and unsolicitedly adjusted residents’ positions in bed or in wheelchairs, fetched blankets, postponed breakfast, or provided extra touch and company. This was also shown by personalised preparations, i.e., putting pieces of tissue in strategic places for a resident who was affected by a dripping nose. Again, ANs claimed such tasks were important to respect and perform, as they assumed residents missed their ability to manage independently. Their adaption also included overruling their norms, i.e., performing showers very quickly with residents who preferred it that way, irrespective of their own ambitions to perform them more slowly. Also, they avoided changing scheduled shower times for residents with cognitive failure, as they might not comprehend the reason. Moreover, they were seen to adapt to residents’ unique interests, i.e., when helping them complete forms concerning political elections, or by being compliant with residents’ preferences of appearance, i.e., folding up long sleeves or applying nail polish. The adaptiveness also comprised guarding integrity, by closing doors when residents were naked, or looking away while shy residents undressed.

Residents described ANs’ adaptiveness as an attentive kindness and cheerfulness that made them feel as though they were being taken seriously. This loving encounter could compensate for losses experienced earlier in life, here described by a resident:

Resident: You get love from the girls here, you know. They come and cuddle you and… Mother wasn’t very generous with that. We never got to sit on our mother’s lap and cuddle, she had too much to do. Interviewer: But you get to now? Resident: Yes, now I do! Now I do with the girls here. (Observation 16)

Residents were also adaptive by accepting that staff would see them naked in vulnerable situations, and by carefully attending and following ANs’ instructions in ABC-situations.

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