Abstract
Family meetings are a cornerstone in intermediate care (IC) and a powerful tool in achieving patient participation. Staff in IC are nevertheless uncertain about how to run these meetings. This study explores the negotiation of patient participation in 14 family meetings by observing the interactions between patients, relatives, and staff. Using Goffman’s dramaturgical theory, supplemented by positioning theory, we illustrate, through four cases, how the participants negotiate their opinions by enacting positions like performer, director, audience, and nonperson. Patient participation takes place when the family meetings are characterized by respect and empathy, when the staff restore and elicit patients’ and relatives’ preferences, and there exist real alternative outcomes of the meetings. The emphasis should be on meeting structure, group composition, and preparation of the patient team. The findings are valuable for staff, patient organizations, and policy makers responsible for program development and tools to optimize patient participation within family meetings.
Keywords
Introduction
Despite the fact that the population is getting older, with accompanying multiple and chronic diseases and high degree of frailty (Clegg, Young, Iliffe, Rikkert, & Rockwood, 2013), the length of stay in hospitals in the Western world is significantly reduced (Deniger, Troller, & Kennelty, 2015; Organisation for Economic Co-operation and Development [OECD]/European Union [EU], 2016; van Vliet, Huisman, & Deeg, 2017). The intermediate care (IC) services provide short-term support to frail, older patients following an acute hospital admission, or to patients admitted from their homes, to allow further recovery and decision making (Godfrey & Townsend, 2008; Johannessen, Werner, & Steihaug, 2013; National Health Service [NHS] Benchmarking Network, 2015). The IC services thus fill a gap in treatment between hospital and home for older, frail patients (Pearson et al., 2015; Young, 2009).
As an upcoming practice and research field, patient participation implies that the patients’ resources, goals, and needs should be the guiding principle in service delivery (Castro, Regenmortel, Vanhaecht, Semeus, & Hecke, 2016). Patient participation in IC means “seeing the patient as a whole,” with emphasis on a team approach involving the relatives, while focusing on individual information and knowledge exchange to ensure reciprocal engagement within flexible organizational structures (Kvæl, Debesay, Langaas, Bye, & Bergland, 2018). Thus, patient participation in IC can be placed in the tradition of person-centered care, with an emphasis on the persons’ meaningful life. Person-centered care is a development of patient-centered care, which focuses mainly on the patients’ functional life (Eklund et al., 2019). Family meetings are a cornerstone in IC services (Milte et al., 2015). An interdisciplinary team, patients, their relatives, and the municipal district coordinator (DC) meet to make important group decisions about goals, follow-up services, and length of IC stay (Griffith, Brosnan, Lacey, Keeling, & Wilkinson, 2004). The aim is to make a rehabilitation plan and to capture the patients’ and the relatives’ voices. As such, they are asked: “What is important to you?”
The emphasis on cost-effective services along with the policy of “aging in place” has led to a demand for more coordinated patient pathways. Thus, a purchaser-provider model has been developed in Oslo to ensure a distinction between those who assess and those who provide the services (Rostgaard, 2012; Vabø, 2012). This implies that the purchasers (the municipal DCs) assess and approve the services, while the providers (the staff in IC) perform the services ordered on behalf of the patients. Within this model, IC staff may experience constraints that prohibit them from using professional discretion, which is perceived as a threat to patient participation. Furthermore, in balancing work between the patient’s needs, available resources, and regulatory constraints, they may adopt routines that simplify their interactions with patients (Kvæl, Debesay, Bye and Bergland, 2019). Research reveals that older patients often do not feel involved in their own rehabilitation process (Benten & Spalding, 2008; Trappes-Lomax & Hawton, 2012) and, further, that staff need education and training to implement patient participation in a way that empowers patients (Dyrstad, Testad, Aase, & Storm, 2015). Used effectively, the family meeting could be a powerful tool in achieving patient participation (Vahdat, Hamzehgardeshi, Hessam, & Hamzehgardeshi, 2014; van Dongen, Habets, Beurskens, & von Bokhoven, 2016).
Although the family meetings are described as important and worthwhile, it is not clear how, and by whom, the voices and wishes of older people are given due priority. In fact, they are organized and run differently between the districts, thus staff in IC are uncertain about these meetings regarding roles and functions (Kvæl, Debesay, Bye, & Bergland, 2019). Studies of patient participation in geriatrics are scarce (Milte et al., 2015), and there is little research concerning the processes around family meetings in IC (Griffith et al., 2004; Milte et al., 2015). The present study addresses a research gap by exploring the negotiation of patient participation in these meetings, by observing the interactions between the older patient, relatives, and the staff in IC.
Theoretical Framework
Drawing on Goffman’s dramaturgical theory, supplemented by positioning theory (Davies & Harré, 1990), we demonstrate the multiple roles and positions the participants play to negotiate their opinions and values. In his dramaturgical theory of human interactions in everyday life, Erving Goffman (1990) argues that we display a series of masks to others in acting roles, controlling and staging how we appear, being concerned with how we come across, constantly trying to set ourselves in the best light. Roles are patterns of behavior that are representative of the person’s social status, for example, the role as patient or nurse, that fit the social norms of society. However, we might wear different personality masks within the same role, for example, we can be deadly serious or likewise laugh with joy. We might be “sincere” or “cynical” in what we say and do, and even switch mask as a tactic. We play a range of different parts, determined by the situations we take ourselves to be in and how we think we present ourselves in the room of negotiation. We adjust our behavior, depending on whom we are interacting with (Goffman, 1990).
According to Goffman (1990), a performance can be defined as a transient activity by a person during an interaction with a particular intent of influencing others. A performance assumes a physical location/stage, props, and costumes. Front-stage is when the performance takes place in front of an audience, while back-stage is when the performer retreats from public gaze and privately receives assistance. Props are objects for performers to use or abuse while enacting their positions, for example, the room’s furniture, while costumes means the way we dress, for example, business suit or the white lab coat. In our case, the family meeting’s location may be considered to be front-stage, where the performers enact different parts. The back-stage might be in the medical room where the staff discuss patients. A team is a group of people who collaborate to define the situation, for example, the IC team or the patient-relative team. However, one person might also function as a team: the patient as a single performer. The team controlling the stage is the performance team, while the audience listens. Different parts are enacted in our interactions, some more influential than others. “Directors” possess great power and can control the positions of the other performers. The nonperson is positioned by the audience and the performers as someone “who isn’t there.” In addition, Goffman argues that secrets might be used to maintain a performance in the team. Inside secrets imply knowledge shared only by team members, whereas strategic secrets mean future intentions of the team kept hidden in the present. In this article, we consider communication as both expressions given and as expressions given off, the latter being nonverbal and unintentional (Goffman, 1990).
As a supplement to Goffman, we add the concepts of “positioning” and “discursive practices” to grasp some of the structures behind the interactive performances in everyday life. Positioning, as introduced by Davies and Harré (1990), is the discursive process whereby people are positioned through conversations in jointly produced story lines. “Positions” are dynamic “roles,” and in line with the use of masks. During a conversation, a person can say something that positions another, called interactive positioning. However, a person can also position oneself, called reflexive positioning, for example, the patient who positions herself/himself as a nonperson or as a director. Each position entails moral rights and duties that determine what can be said and done in the given context. A discourse is to be understood as an expression of social practices including beliefs, knowledge, religion, norms, and values and as an institutionalized use of language and language-like sign systems (Davies & Harré, 1990). Thus, wearing different masks in their interactions, the participants in the family meetings are either positioning themselves or being positioned, which is both a logic strategy to coming across but also an expression of the associated discursive practice.
Method
Context of the Study
To meet demographic changes, the city of Oslo, Norway, has synchronized all municipal short-term and rehabilitation services into four major institutions, organized and managed by The Nursing Home Agency in Oslo. The study was conducted in three of these IC institutions, serving three quarters of the districts in West, East, and North of Oslo, with a total of 350 beds. To meet the complex needs of geriatric patient within IC services, the care is usually organized as an interdisciplinary team approach. The IC institutions aim to deliver geriatric rehabilitation, support timely hospital discharge, and prevent unnecessary hospital admissions to fulfill the policy of “aging in place,” which implies being able to live at home for as long as possible. Patients in IC typically receive rehabilitation after hospitalization to manage activities of daily living (ADL), a home visit with an occupational therapist, and follow-up services from the district after discharge to home.
Defining the Situation
We observed 14 family meetings within IC services. The initial family meeting is supposed to take place within the first 2 to 3 days of the patient’s IC stay. As a standardized routine, the aim is to voice the patient’s needs, make a rehabilitation plan, and discuss follow-up services. Although the meetings are organized in different ways, the patient, relatives, the IC team, and the municipal DC are usually present. The 14 participating patients were of an average age of 87 years (range: 74–97 years), nine women and five men. The most common diagnoses were fractures (hip/femoral/rib/arm), osteoporosis, heart and lung conditions, cancer, neurological conditions, infections, frailty with malfunction, and fall issues. According to medical records, six of the patients showed clinical signs of initial cognitive impairment, that is, memory loss situations and confusion in relation to time/place. Thirteen of the patients needed municipal home care after discharge, and 14 used a zimmer frame. The relatives were present at nine of the family meetings, were aged between 50 and 87, respectively: daughters (7), sister (1), daughter-in-law (1), and sons (4). The IC-team present were most commonly a nurse or a nursing assistant, a physical therapist, and an occupational therapist. The DCs attended 10 of the family meetings. Overall, the meetings lasted between 10 and 56 min, with an average of 32 min, and were held the fifth to sixth day of the patient’s IC stay. Eight of the meetings took place in the patient’s room, whereas the others were held in a conference room. The negotiations conducted in the meetings were mostly about defining the patient’s goals and needs, discussing appropriate interventions within IC and follow-up services after discharge. Another aspect of great relevance was the length of the patient’s IC stay. The patient and relatives frequently tried to convince the staff about the need for an extended stay in IC.
Data Collection
The manuscript is based on observational data consisting of meeting notes and audio recordings. In the first step, we included the patients, a strategic sample to embrace the diversity in IC. Patient inclusion criteria: age > 65 years, admitted to IC from hospital or home due to acute or chronic disease and/or frailty, and dependent in ADL but with an objective of being able to live at home. Participants meeting the inclusion criteria were informed about the project by staff working in the three IC institutions. Patients who agreed to participate were then given additional information and, with their consent, their chosen relative was contacted and asked to participate by Linda Kvæl. Furthermore, the IC team and the municipal DC were informed and asked to participate. Thus, the researcher was introduced to all the participants in advance of the meeting observations. Linda Kvæl then observed all the initial family meetings, nonparticipating, positioned in the background, while taking notes. The meetings were also recorded and transcribed verbatim by the same researcher to process sensitive data. The family meetings took place between April and December, 2017. The researcher present at the meetings has a background as a physical therapist and broad experience within geriatric rehabilitation and IC services.
Ethical Considerations
The Norwegian Center for Research Data (No. 53013) preapproved and registered the study. All participants in the family meetings gave their informed consent after receiving oral and written information, which included the assurance that they could withdraw their consent at any time without consequences. In compliance with Norway’s Privacy and Electronic Communication Directive, the audiotapes were secured in Services for Sensitive Data.
Data Analysis
Data were first analyzed using thematic analysis based on Braun and Clarke (2006). This resulted in three main themes, presented in Table 1, representing all the 14 family meetings. Initially, all the authors read the transcribed data from the meetings in an open way, searching for meaning and patterns. Linda Kvæl then listened to all the audiotaped meetings again and, in combination with the meeting notes, wrote up the essence of what occurred in the meetings. In the following discussions in the author team, it became apparent that patient participation in the meetings often implied negotiation, the use of different strategies or positions to get one’s point across. Accordingly, we realized that Goffman’s dramaturgical theory, supplemented by some of the concepts from the positioning theory, could serve as a suitable framework for the ongoing analysis. Consequently, all the data material was coded by Linda Kvæl, and organized into themes, moving back and forth within the material to ensure that the themes were supported by quotes from the family meetings. The authors’ backgrounds are within physical therapy, nursing and nutrition, including extensive research and/or clinical experience within the field of health care for older people. The process of identifying, collapsing, and reviewing themes led to an extensive discussion among the authors to preserve variability and reflexivity and to establish credibility (Morse, 2015). To enhance validity, Linda Kvæl talked to the patients and relatives about the observations (reported in another article: Kvæl Debesay, Bye, Langaas, & Bergland, 2019) and further discussed the analyzed findings in a stakeholder group in IC. During the analysis, four of the meetings stood out as representative of all the 14 family meetings to convey the complexity of positions found within our data. We have thus chosen, rather than breaking our data into incoherent fragments from the family meetings, to present the four cases in the demonstration of the three main themes (Yin, 2011). We believe that the decision to use subcases as a way to convey more general findings can be helpful to other researchers, as it overcomes some limitations of thematic analysis, particularly the fact that it tends to violate the integrity of the situations that qualitative researchers observe in the field.
The Results of the Analysis.
Results
The thematic analysis of the 14 family meetings resulted in three main themes (Table 1): “The patients’ need for masquerade to participate,” “The strategies of relatives in coming across,” and “The professionals’ parts in defining the situation.” Commonalities were found across the 14 family meetings’ dramaturgical setup, each consisting of a unique performance and characteristics defining the situation. To participate in the family meetings, patients, relatives and health care professionals were all putting on different masks. The force of discursive practices was identified. At times, there were multiple positions being played out by the same person within a single meeting, for example, patient as a performer, as a director, and as a nonperson. Secrets, costumes, and props were used to reinforce the positions taken.
To report our findings in a concise manner, four of the meetings or cases are used in the further presentation, named “Knowledge is power,” “The broken dialogue,” “Best of both worlds,” and “Play to the gallery.” The four cases were chosen to illustrate the full range and complexity of masks and positions in our data and how the three main themes interact with each other in order to include or exclude the patient in the room of negotiation.
Case 1—Knowledge Is Power
The first family meeting took place in the patient’s room 1 week after patient admission. The highly educated female patient (90 years) was sitting as a “queen” in the room’s only armchair, functioning as a prop. Her hair was freshly prepared, her clothes clean, and she expressed a sense of control. On the bed, her two daughters were sitting, wearing fashionable costumes as well: One of them lived next door to her mother. The nurse and the municipal DC arrived 5 minutes late, which clearly irritated the patient as she looked at her watch and then at her daughters with a strict facial expression. The patient had previously met the nurse but did not know her function, while the coordinator was new to her. As a relatively healthy woman, the patient had not received home services in the past. The atmosphere in the meeting was initially tense, with the patient starting out by saying “Ok, so who is leading this meeting?” thus actually positioning herself as the “director”:
Ok, so who is leading this meeting?
That’s me. Welcome, ehhm, now we’re going to have a start-up conversation, it’s about the goals of your stay, and how to make it in the way you want it . . .
Yes.
Well, I’d hoped that the physiotherapist should be here, but he is . . .
He is sick!
He is sick. So then, it’ll just be us.
So, you are the one representing the doctor?
No, I am representing the nurses.
The nurses . . . ?
Because I am a nurse.
Yes, I know that.
So, I am not representing the doctor. But I represent the department. And I’m the nurse responsible for you.
It . . ., they . . ., we should . . ., it should have been written her (holding up an information brochure with an empty space under the line “responsible nurse”).
Hmmm . . . ?
When I arrived here, I got this (showing the information brochure once more).
There should have been some names here (pointing at the empty line).
Yes, we don’t always . . ., actually we don’t do it.
No . . . ?
No, but you can always ask, and usually you will be told . . .
You know, when you arrive at a place like this, you are pretty exhausted, you can’t ask about everything . . .
That’s the reason it’s okay not to be given too much information the first days.
Talking to the patient back-stage after the meeting, she revealed that there was a lack of information the initial days, that is, she did not know that the nurse in front of her was her responsible nurse. Furthermore, she did not feel confident about the medical follow-up, asking the nurse in a critical tone if she was representing the doctor. Finally, she was dissatisfied with the fact that she had not received any physical training. Overall, the patient and her daughters were angry but had decided to keep this as a strategic secret. As a response to the patient’s critical director position, the nurse seemed to put on the mask as a system defender, having an answer to all the indirect accusations instead of apologizing for the lack of follow-up services. In what followed, the patient and her daughters continued to clearly voice their needs in a systematic and competent way as a team, using medical terms, referring to props like the medical journal and the oxygen machine, the hospital doctor and professionalism. Precisely, with few words, they expressed that they knew the patient’s rights:
I don’t know if I’ll be well enough at that time (next week), feel strong enough, I don’t know that . . ., and then the question is, what are we going to do . . . ?
Yes . . ., we have been talking, and we see . . ., ehh . . ., that mother is very tired, her muscles are weak, her strength is limited. She feels dizzy . . ., she lives alone, she has never had any home services, ehh . . ., been independent, but this situation has become quite serious, at the hospital, last week, so she is greatly reduced, and the COPD (chronic obstructive pulmonary disease) is getting worse. It has now reached stadium 3 . . . (?).
4–5 (correcting her daughter).
Says the medical report.
Yes, 4–5.
Yes, so it has become significantly worse, and ehh . . ., so what I’m thinking, is to receive some help to get stronger . . . I don’t mean like treadmill and bicycle and stuff like that, but just some systematic physical activity, maybe someone could just walk with her, encourage her . . ., or she will just remain sitting in the chair . . . And that is understandable, because you (looking at her mother) are too tired to take the initiative by yourself . . ., ehh . . ., but she really needs that.
The atmosphere of the meeting gradually became more positive as the DC responded to the needs of the patient team at all points, expressed as an overall more relaxed tone. Accordingly, the case illustrates all the three main themes from the thematic analysis. Using his position as gate-keeper, the coordinator promises that they will work better in the unit from now on, reflecting the purchaser and provider positions. Within this meeting the coordinator entered a position as facilitator, apologizing for the initial lack of services:
So . . ., let’s summarize. You are here, you will get physical training. It’s regrettable that you have not started yet, but they will figure it out . . . And . . ., you will not be discharged to home before your O2-saturation is stabilized, and you will get training in order to live at home. Also, a home visit will be made.
But not just the saturation, now I think . . ., I can make it without that, but it’s about feeling safe . . . ! I am a little dizzy . . . Yeah, I’m not like I used to be . . .
I understand. But with a little more physical activity, and the doctor will check out your medications, then you will get back on your feet we hope . . .
But does that mean . . ., just in case I need a little more time, I might stay her during Easter for example . . . Are there opportunities for that?
Yes, there might be.
Thus, having started out as three teams, they end up as one team where the patient has been successful in her wishes, being a competent patient and, with help from her daughter, an advocate of care, demonstrating that knowledge is power and clearly an advantage in the masquerade to participate. Positioning herself as the director of her own care, she can thus be placed within the discursive practice of the upcoming active user with knowledge, challenging the traditional medical model and the passive patient just receiving health care.
Case 2—The Broken Dialogue
At the second family meeting, also held in the patient’s room, there was no family member nor any DC present, only the patient and the IC team. The IC team faced the patient in line, like a panel. This female patient (94 years) had applied for a stay in nursing home three times as her health declined. However, the care services claimed that she was not sick enough, even though she had been in and out of hospital with subsequent IC three times over the past months. Furthermore, the patient had recently moved from another unit within the same IC institution. Thus, she was a bit disoriented, and due to short notice, her daughter was not able to participate in the family meeting. In addition, the nursing assistant (NA) started out, using a checklist as a prop, with no initial small talk, to establish a frame or purpose of the meeting. There were two performance teams in this meeting, the IC team asking the questions and the patient as a single performer, trying to answer as best she could, initially forced to choose a rather defensive mask within the apparently unfamiliar setting:
I’m going to ask you a question. What’s important to you, while staying here?
What . . ., yes . . ., to get food (insecure laughter).
What more can we help you with?
Help me with . . . ? I find it a bit difficult with the clothes. I’d like that it was not . . ., a lot of money . . ., and that we needed clothes. Because my children, they live so far away, and I can’t . . ., no one can bring me clothes . . . And the fact that we can’t wash our clothes here . . .
But if it’s so hard for your kids, then we can help you, washing. Mmm.
Patient: [. . .] I just think it had been easier to just wear institutional clothing . . .
Due to observed hesitation and flickering eyes, it seemed that the patient did not understand the initial questions, felt uncomfortable and that she was not adequately informed about the purpose and function of the meeting. There was a lack of dialogue. Thus, the patient was assigned the position as the vulnerable patient, not able to communicate her real issues. This case illustrates the masks of patient and staff, including the lack of a relative position. The patient was concerned about her clothes. However, at the end of the meeting she reveals her secret, that she is sitting next to an elegant woman with expensive clothes and jewelry. Her real concern was not clean clothes, but being good enough. The patient was also expressing concern regarding the lack of physical activity in the ward. As the meeting unfolded, the physical therapist (PT) took over the director position, asking the patient in a slightly hard and annoyed tone about her physical goals, underlining that everything you do is training.
But Jenny, everything you do is considered as training. Walking to the dining room, that’s also a part of the training, isn’t it?
Yes . . .
Or do you think that it’s not?
I have not thought about that, because that is something you do all the time.
Yes . . ., that’s true. But what would you like to focus on during physical activity? What would you like to achieve?
What to receive?
No, what would you like to focus on during physical activity?
Well . . ., I don’t know . . ., I don’t know anything . . .
No . . ., but what is difficult for you now?
Walking.
Then you are exercising when you are walking.
Previously, the patient went to church and to the day center to socialize. When asked about why she had stopped doing this by the occupational therapist (OT), she pointed out that she did not want to be a burden. She stated: “That’s the worst thing about being old, you don’t want to bother other people.” Overall, the meeting was mostly about physical goals. However, the patient revealed at the end of the meeting that she felt lonely, and experienced a lack of social activities as well. She described the IC unit as “quiet as in the grave.” Although in a nice way, the IC team defended their practice, revealing their focus solely on the physical aspects of function:
But it is . . ., and you can’t do anything about that, the loneliness . . . And there is nothing going on here! In the past, there were choirs . . ., singing . . ., something that gathered people in the living room. Now . . ., in the living room, it is quieter than in here (the patient room). Even though there are two people sitting there, they do not say a word to each other. You’ve seen it too?
Mmm. Yes . . . (seems a bit surprised).
Somebody here has to take the initiative . . . . Yes.
But it’s not all . . ., not everyone here is interested either . . . [. . .]
No . . ., it varies a bit. But it happens, that there is quite a lot of life out in the living room or by the elevator.
I have never experienced that.
No, but you are not there all the time. You are often in here . . .
The patient, raised during the Second World War, had low education, was not sure if she had nice enough clothes, afraid of being a burden. During conversation the patient expressed several times that the staff were the experts regarding her condition. Thus, the patient is not only positioned as the vulnerable patient, but she also positions herself within the discursive practice of the traditional passive patient who adapts and with a strong belief in authorities.
Case 3—Best of Both Worlds
The next family meeting took place in a conference room 1 week after patient admission. The female patient (86 years) brought her daughter and her son to the meeting. The son came a little late: He was tall with fancy clothes, with the appearance of a successful businessman.
We usually gather the troops in order to agree on the way forward, uncover previous function and how it is now. To make a plan. Then we would like to hear from all parties, what you are thinking . . . And what to do in the future. Starting with you, how do you think it’s going? (looking at the patient)
I think it’s going great. I have even tried the stairs. [. . .] That went really well. So, there is no problem. No problem!
This is rehabilitation, and you are making the most of it, attending groups . . .
Yes, I think you are great in helping me back on my feet. I think so . . . (smiling).
The PT started out as the director, highlighting the patient’s motivation and her intention of getting well. The patient was very pleased, stressing that she had nothing to complain about, smiling, with a positive attitude. Thus, the patient took the position as the conforming patient who fits within the system, adapting to routines, following the schemes. Two teams were playing their roles and positioning each other, trying to define the situation: the patient team (patient and relatives) and the IC team. At the same time, there was a good atmosphere throughout the meeting with laughter and an easy tone. As the play unfolded, the son took over the director role, expressing that the family has large financial resources:
My sister and I have been in contact with a private company as well. So, we’re thinking, to facilitate . . ., our mother is very physically and mentally healthy in all ways, but our father has become an old man . . . So, it’s important that you (looking at his mother) don’t have to take all the responsibility . . ., so delivery of dinner and . . ., things like that. We will buy some private services [. . .].
Mmm, that’s right. But that is . . ., I mean . . ., I don’t know what they offer, I don’t have that overview, so I can’t tell you that, but buying services is only possible from the private ones. You can’t buy services from the district.
No, ok, right, I see.
No . . ., but it’s about making use of what the municipal district can offer, and then we will supplement that with private services.
In addition, yes.
That is great!
Mmm. That will work.
In the further negotiation with the DC, the son discussed the services offered by the district, and what to order from private services to get the best of both worlds. While the son was talking, all the others, the audience, were listening with respect. The patient in this meeting was definitely involved, although presented through her son, who did indeed show her great respect and asked her several times about her opinions and wishes. In the further meeting, the DC was very accommodating in every way, entering a role as a salesperson, service minded, celebrating the idea of using private services. In addition, she gave detailed information about follow-up services in the community, pleasing the customer, even though she at times was talking down the district’s services.
Because at home . . ., what the district can offer related to food delivery, is making sandwiches based on what is in the fridge. However, in order to serve dinner, that’s clearly a weakness, they just warm up food . . .
Right, but then we can fix . . . [. . .]. The food has to be good.
We have already discussed this with a private service, and . . ., your finances are sound you know (looks at his mother), so that is a wish . . .
Finally, when the son stated that the patient wanted to be discharged to home the coming Friday, the coordinator recommended waiting until the following Tuesday. The community is better staffed Monday to Friday, so to obtain a high-quality transition, this is better done during the middle of the week. To summarize, the two teams ended up as one team, where the conforming patient and her director son have, through a tactical choice of masks, gained the best from both worlds, demonstrating the strategies of relatives in coming across. In addition, all the participants are coming from the same district with a high socioeconomic status, the patient team, as well as the IC team and the coordinator. The conversation is based on what the patient wants, to obtain a meaningful life, with no restrictions in terms of money. They all can be placed within the same socioeconomic discourse, they understand each other.
Case 4—Play to the Gallery
The last family meeting presented here took place in the patient’s room 6 days after admission to the IC unit. The patient (88 years) was an intense woman, although funny, with a sharp tone, using a lot of words to express herself. Her daughter was also present at the meeting, in addition to the PT, the DC and a nursing assistant. The patient had had an experience of being discharged to home too early 1 year ago, which can be considered as an inside secret of the patient-relative team:
This is a start-up conversation, we usually have it early in the process, in order to agree on goals and the further tasks, and . . ., yeah . . ., what is needed for you to get home . . . ? That’s the main idea. Mmm.
Yes. Mmm.
So, what are you thinking? (looking at the patient).
Well, I think I’ve benefited greatly from the days I have been here [. . .].
But if we think about the goal . . ., or . . ., what will it take for you to get home?
More of the treatment I get here . . .
Taking on the role as director, the patient was in a good mood, satisfied with the help she had received in the IC unit so far, both from the nurses, the assistants, and the physical therapist. She felt she had been treated with respect. The IC team asked her initially “what is important to you now?” and in trying to convince the coordinator that she needed more time, she took on a mask as the dutiful patient by explaining in detail how she exercised and utilized the stay as the exemplary patient. However, during her strategy of describing the good effects of IC, she presented a picture of herself as too fit or healthy:
Mmm. But you walk in and out of the dining room?
Yes.
You use the zimmer frame alone?
Yes.
Yes. And then I do . . ., in the evenings, when I watch TV, I do exercises with my feet like this (showing with her legs), I count to one hundred, and then I use my knees, and then . . ., I go for a walk, several distances with the zimmer frame, before I go to bed.
The DC and the IC team had had a meeting in advance, back-stage, before entering the stage, and had already decided that the patient should go home, based on physical criteria. That was their strategic secret. And when they revealed this secret, the patient changed her tactic completely, from being a good or dutiful patient, to being the demanding patient with rather impolite behavior. Despite the switch of mask, the patient still did not come across to change the opinions of the DC and staff.
No, so there is no way she might stay another week . . . ? You have decided that before you entered the room?
Yes, we have . . ., because of . . ., made . . ., due to feedback regarding what we have seen, functionally, then we have considered that she must try being at home with home care services and physiotherapy (from the day after).
This is a big disappointment.
Like I said . . ., I should have shoved my head in a flour sack, and I should have gotten . . ., should have gotten so sick . . ., that I couldn’t do anything!
The daughter eventually accepted the decision, but the patient did not. Thus, when the IC team and the daughter further planned her discharge, the patient faded out, positioned by herself (she lost interest in the conversations) and the other participants (they ignored her) as a nonperson. Here, the coordinator took on the mask as the strict purchaser, and due to everything already decided back-stage, she just provided the information without negotiation. The physical therapist took on the role, seemingly, as the server, asking the patient about her goals. However, due to the predetermined meeting outcome (discharge next day), that was a play to the gallery. The patient started out by positioning herself as the director. However, the coordinator neglects what she says, drawing on the medical discourse with an emphasis mainly on physical function, leaning toward professional expertise, assuming to know what is best for the patient. Thus, the patient is positioned as powerless, which shows the staffs’ enactment in defining the situation. This family meting can be placed within a bureaucratic discourse celebrating efficiency and standardization at the cost of patient participation.
Discussion
Drawing on Goffman’s dramaturgical theory, supplemented by positioning theory, we have presented how negotiation of patient participation takes place in the interactions between the older patient, relatives, and staff in IC. In the family meetings, the roles of patients, relatives, and staff were dynamically shaped through subtle patterns of interaction. The participants enacted different positions including performer, director, audience, and nonperson within and across the meetings. Secrets, costumes, and props were used to negotiate the patient participation. Distinct characteristics within discursive practices included the active involvement of the competent patient (Case 1), the vulnerable patient not able to communicate her needs (Case 2), the conforming patient and the director son with large financially resources (Case 3), and the locked negotiation with a back-stage predetermined secret (Case 4). Research states that family meetings are highly appreciated by both patients, relatives, and staff and, used effectively, and promote patient participation (van Dongen et al., 2016).
Goffman (1990) stated that performances might suffer from inadequate dramaturgical directions, for example, the family meetings are held too late in the process or lack relevant members. Both Case 1 and Case 4 took place 7 days after admission, which was too late considering IC’s standard procedure for conducting family meetings. The competent patient (Case 1) “arrested” the IC unit for not having provided any suitable interventions. However, this was initiated immediately after the meeting, promised by the “gate-keeper,” due to the patient and her competent role, positioning herself within the discursive practice of the modern patient. The too healthy patient turned into the demanding patient (Case 4) when the professionals dropped their strategic secret that the patient had to go home the next day, even though she did not feel ready. Accordingly, and supported by research (Kvæl et al., 2018; van Dongen et al., 2016), it is important that these meetings are held early in the process to initiate relevant treatment, to plan follow-up services, and to prepare the patient for discharge to the home.
In addition, to stimulate negotiation at all, the right members must be present. Thus, the family meetings cannot be organized at a very early stage. As illustrated in Case 2, there were neither relatives nor DC present at the meeting, as it was held on the second day. The vulnerable patient at this meeting thus had a restricted negotiation room, apart from discussing possible physical goals, which apparently were not her main concern. Functioning as a gate-keeper, the DC holds power and responsibility in the process of negotiation and should thus be required to participate in the initial family meeting to obtain real patient participation, and act as a facilitator and not a strict manager. In addition, the relatives must be given a realistic chance, and time, to be present. van Dongen et al. (2016) stated that it is crucial that everyone involved in the patient’s rehabilitation process is present and aware of the current situation and new developments.
In light of Goffman (1990), we identified barriers to patient participation through the front-stage and the back-stage, typically bounded visually (taking place out of sight of others). In the first family meeting (Case 1), the patient and her daughters had had a meeting in advance, back-stage, to prepare themselves for applying the correct strategy when entering the front-stage. Apparently, they were informed about the purpose and function of the meeting, which also was the situation in Case 3 and Case 4. Research states that preparation of the patient and relatives back-stage before the meeting, about the purpose and function, appears to lead to increased patient participation (Griffith et al., 2004; Gulbrandsen et al., 2016; van Dongen et al., 2016). However, this was not done in Case 2, which revealed that the patient had no clue what the meeting was about. The staff consequently placed the patient in a degrading and powerless situation, with little emphasis on restoring the patient’s autonomy (Elwyn et al., 2014). At the same time, the observations in Case 2 suggest that the patient equally embodied herself within the discursive practice of the traditional passive patient. Some studies suggest that older patients may have an increased preference for passive roles and make a choice to “leave it to the experts” or relatives (Milte et al., 2015; Pearson et al., 2015; Rosenbaum, 2015). In this respect, to avoid manipulation, consultation with patients and relatives, even about their preferences for participation, is crucial (Levinson, Kao, Kuby, & Thisted, 2005). Furthermore, staff must be aware of how patients might position them and how they are positioning others through their interactions and use of masks.
Completely crucial for promoting patient participation is that the staff are open-minded when they enter the stage, collaborating without prearrangement. In Case 4, the staff had a meeting in advance back-stage, deciding that the patient was leaving the next day, based solely on physical criteria. Thus, no negotiation took place within this meeting where the IC team had a rigid script and were not prepare to improvise with the patient and her daughter. Despite decades with the policy of patient participation, the approach is still not part of mainstream practice (Dyrstad et al., 2015; Kvæl et al., 2019). The patient in Case 4 changed her mask from being the dutiful patient to the demanding patient, and finally to what Goffman defines as a nonperson, totally withdrawn from the interaction. Although she had had a bad previous experience, the patient’s voice was not heard. As stated by Gulbrandsen et al. (2016) previous negative experiences may reduce the patient’s capacity to manage uncertainty and the sense of self-determination, which might explain the shift of performance strategy within this family meeting.
The way we dress and what we wear are regarded as costumes, and costumes set the actors aside from one another (Goffman, 1990). In Case 3, the son entered the meeting, or front-stage, as a successful businessman: tall, well-dressed, eloquent, expressing authority. Research also highlights the crucial contribution of relatives (Strøm, Andersen, Korneliussen, & Fagermoen, 2015; Tønnessen, Førde, & Nortvedt, 2011), being the patient’s advocate of care (Dyrstad et al., 2015). At the same time, the patient showed off as a positive and likable woman, motivated by an intention of getting well, with an uncomplicated diagnosis, thereby entering the role as the conforming patient who fits the system. Together, the patient and her director son gained indeed everything the way they wanted, with the health care professionals “dancing to their direction,” all placed in the same socioeconomic discourse. Our results are in line with previous research, indicating that motivated, positive, and conforming patients may receive higher levels of rehabilitation and attention (Maclean & Pound, 2000; Wiles, Postle, Steiner, & Walsh, 2003). A system where the conforming patient receives more, as well as patients with strong relatives, conflicts with the idea of equality and will eventually affect the weakest groups (Tønnessen et al., 2011), for example, the patient in Case 2.
We are not always aware of how the masks taken are perceived by patients or families, due to traditions and restrictions imposed on us when enacting positions within discursive practices. An increasingly specialized welfare state with principles like efficiency and competition may conflict with the policy of patient participation (Christensen & Fluge, 2016; Freidson, 2001; Hasenfeld, 2010; Mik-Meyer, 2017). In Case 4, the DC was the strict gate-keeper and had already decided on the outcome of the meeting based on physical criteria. However, it is important to mention that the DCs work under a constant pressure from their own leaders to be strict with regard to granting places in IC. As a leader, you must sometimes make unpopular decisions and are forced to take on the role as the strict manager. Thus, a standardization of health care services can be seen as a strategy for surviving the balancing of work between regulatory constraints, limited resources and patients’ needs (Johannessen, Tveiten, & Werner, 2018; Lipsky, 2010). In addition, as a nurse or a physical therapist within IC, you do not have any administrative authority, which constitutes a structural restriction regarding available masks (Rostgaard, 2012; Vabø, 2012). This being said, masks are also used strategically, and there are several ways to be a strict manager.
Goffman (1990) considers communication as both expressions given and expressions given off, the latter being nonverbal and unintentional. Thus, informing and exploring the patients’ preferences are not enough: It is about how this is done in practice (Gulbrandsen et al., 2016). As revealed in both Case 2 and Case 4, there was great emphasis solely on physical criteria. For the patients to have a real voice, the staff must listen and act on what the patients are actually saying. Thus, patient participation in light of a dramaturgical perspective might not always be favorable in a context like IC. Gulbrandsen et al. state that vulnerability, caused by illness and frailty, expose existential aspects of physical, social, and psychological dimensions. Human beings are social beings, implying that autonomy is relational, and more like a capacity than an individual status (Gulbrandsen et al., 2016). This suggests a more flexible use of masks, which allows to break the predefined rules of conduct, to empower the patients. Within patient participation, power and trust are essential attributes, and depending on the circumstances, patient participation can be conceptualized as empowering or disempowering (Dent & Pahor, 2015). Most patients in IC have multiple and chronic diseases and a high degree of frailty, requiring a holistic approach (Clegg et al., 2013; Covinsky et al., 2003; Heiberg, Bruun-Olsen, & Bergland, 2017). Within IC, we thus call for greater attention to the emotional/relational aspects of care (Elwyn et al., 2014; Kvæl et al., 2018). This is in line with Gulbrandsen et al., who propose that the aim of patient participation should be restoration of the patient’s autonomous capacity (Gulbrandsen et al., 2016).
Strengths and Limitations
To capture the negotiation of patient participation within family meetings in IC we used nonparticipant observation, offering a nuanced and dynamic appreciation of the family meetings that cannot be as easily captured through other methods (Liu & Maitlis, 2010). The overt observations took place in three different IC institutions, and all observations were conducted by the same researcher, with broad experience within geriatric rehabilitation and IC. To promote reflexivity, the author responsible for data collection wrote memos throughout the whole period, in addition to taking field notes and audio recordings from all the meetings. All the authors read the transcriptions and the field notes and took active part in all the steps of the analysis. The themes were discussed moving back and forth in the material until agreement was reached and attempted presented with clarity (Morse, 2015).
Although Goffman (1990) provided an interesting lens for understanding the interactions within family meetings in IC, there are aspects of the findings that somehow escape the framework: the premeeting, back-stage decision that one patient should leave (Case 4), and the fact that one family could buy private services on top of the public assistance (Case 3). Both are examples of structural, material conditions that directly shape the content and dynamics of the meetings. Administrative pressure upon care providers limits their ability to give patients a voice. Favorable economic conditions allow a family to obtain the best of both worlds, even beyond the masks they used in the interaction. However, to glimpse behind these structural boundaries to a certain extent, we included concepts such as “positioning” and the force of “discursive practices” (Davies & Harré, 1990). Through discursive practices, people reproduce preexisting social values by positioning themselves, forces that may be supported, resisted, or transformed in the meeting with other individuals.
The researcher’s presence at the meetings may have influenced the participants’ action, for example, the staff may have increased patient participation to provide a good impression of their practice. Linda Kvæl’s background and knowledge within IC services were helpful to access the field in the first place. To obtain trust and a deeper understanding, she spent a certain time in the IC units ahead of the meetings, balancing a close with a distant role to avoid overempathizing with the participants. Each of the 14 family meetings consists of a unique performance and characteristics defining the situations. The low number of observations per IC institution might be a limitation. However, after analyzing all the family meetings, it became clear that the main roles identified within the different institutions were comparable, thus we assume sufficient information power or data saturation (Malterud, Siersma, & Guassors, 2015). Another limitation might be the overrepresentation of the “children’s role” among the relatives. Due to the case study design, the issue of transferability looms larger than with other types of qualitative research. However, much can be learned from a particular case. Erickson argues that since the general lies in the particular, what we learn in a particular case can be transferred to comparable situations (Erickson, 1986). Thus, we believe our findings will have great implications for staff in similar IC units.
Conclusion
Using Goffman’s dramaturgical theory, supplemented by positioning theory, we have identified different positions enacted through subtle patterns of interaction within family meetings in IC. Patients, relatives and health care professionals were all taking on different masks. In addition, secrets, props, and costumes were used to reinforce the roles taken. Our four cases illustrate how the different roles interact with each other to include or exclude the patient in the room of negotiation. First of all, staff must be aware of their positions and how they are positioning others within these family meetings. As a professional, how you express yourself, where you sit, what you say, and how you say things will directly affect the patient in the room of negotiation. For the patients to have a voice, the staff have to listen and act upon what the patients are actually saying. Our data disclosed that the competent patient with knowledge and strong relatives will have an advantage in this system: This will also be the case for the conforming patient who nicely fits into the standardized routines or having large financial resources. The family meetings can be seen as crossroad for several discursive practices and story lines. Thus, it is important to recognize the force of discursive practices that construct our reality and understanding of a given situation. Consequently, we can never control the content of these meetings only with a checklist. However, awareness and knowledge of ourselves in the face of others appear to be central. Accordingly, a more flexible use of masks, which allows to break the predefined rules of conduct, may position patients and relatives as more active contributors in the negotiation.
It seems like strong family meetings operate like an improvisation scene where all players are listening and building the scene together. They are live, uncertain, and require adaptability and flexibility. However, good preparation is necessary in organizing a successful family meeting: The performances might otherwise suffer from inadequate dramaturgical directions. This includes informing patients and relatives back-stage about the purpose of the meeting, in addition to an emphasis on meeting structure and group composition. The family meetings must be held early in the process to clarify expectations and develop a rehabilitation plan. Furthermore, it is crucial that the municipal DC is present to negotiate. Finally, the state of vulnerability in geriatrics imbues patient participation with a deeper existential dimension. Within family meetings in IC, we thus call for a greater attention to the emotional and relational dimensions of care, a person-centered care. Patient participation takes place when the family meetings are characterized by respect and empathy, when the staff restore and elicit patients’ and relatives’ preferences, and there are real, alternative, potential outcomes of the meetings. The study highlights the complex process of patient participation. Accordingly, the findings are valuable for staff, patient organizations, and policy makers who are responsible for the development of programs and tools to optimize family meetings and for the overall implementation of patient participation into clinical practice.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
