Findings: To choose or not to choose – choice, recovery, or coercive treatment
In the analysing process, we found the following coding frame and themes inductively emerging from the text concerning communication, choice, treatment components, and recovery processes:
Table 2 Relevant codes and themes from the analysing process:
Codes
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Basic themes
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Organizing themes
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Global themes
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Information
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Communication
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Treatment components: communication skills and choices to make
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To choose or not to choose; Personal recovery processes and patient choices
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Doctor
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Power play
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Take you seriously
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Safe
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Choose the unknown
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Factors influencing choices
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Choice and experience
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Choice and medication
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Choice and stigma
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Choice and insight
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Choice and coincidence
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Choice and coercion
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Choice and pressure
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Freedom of choice and responsibility
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Freedom of choice and human dignity
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Do it myself
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Getting experienced with life with an illness
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Personal recovery in process
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In recovery
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Worked well
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Do stupid things
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Coping
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The findings concerning the topic of choice and treatment experiences using key quotes from the basic themes are described in the following:
Communication: the key to a good relationship between professionals and patient
Generally, a feeling of trust and confidence in the therapists were dominant experiences shared by the informants. One described the characteristics of a good relationship with the therapist and other health care professionals as: “…it’s people who take you seriously, and see your abilities beyond being a patient, and try to figure out how they best can help you.”
On questions about who they would trust getting advice from concerning their treatment choices, all mentioned their current therapist, along with other key persons in their life. Availability was another important issue mentioned regarding trust and communication. One participant described his psychiatrist as very available and easy to reach, and he felt he took part in the decisions concerning his treatment:
“I really like that here. I can talk with (name) in the hallways, and if I have to schedule another appointment, or… Yes. Very easy (…) Sometimes we talk for ten minutes without having an appointment, and I get a new prescription, and just talk. We do talk about different mood stabilizers, and what he recommends, and such. So it might be that I will start a new medication again that I told him that I wanted to consider.”
The participants mostly described an open and dynamic dialogue with the therapists, however, these perceptions were dependent on both characteristics of the therapists and participants. The same participant as above continued with how he didn’t like this same psychiatrist at all in the beginning of the relationship, talking about how important it was to trust the therapist: “Yes, well, he has been there quite long, through the worst of times, I mean … the psychiatrist. It’s quite special. Now I think he is nice, but in the beginning I didn’t think he was nice at all (…) I didn’t like him.”
Asked if he thought this had any connection with his symptoms, he confirmed this, and said he was very sceptical towards strangers when he was ill. In this way, the participant’s illness and change of symptom severity might affect the experience of the quality of the communication.
There were also examples of distrust and choosing not to mention sensitive issues to avoid uncomfortable situations. This could be talking about worsening of symptoms, or wishing to change or discontinue a medication. One informant described powerlessness in the relationship and the communication as a “game,” especially when she wanted to change her medication: “So I kind of picture that ‘NO’ ahead of me. And then I think, is it any use to bring it up, they decide. So, it’s kind of a game, I feel, where he has the power and I don’t have much to say.”
Despite mostly having confidence in the therapist, the imbalance of power sometimes described complicated communication. Some participants seemed to lack self-confidence in their meetings with the therapist, describing a feeling of hopelessness. Another participant talked about how choices, in this case about how to discontinue her medication, would be made during a communicative session with her therapist: “the impression I get is that, I will be allowed to be psychotic if I want to, but then I have to do other stuff, in order to maintain wellness in the psychoses. So then she talked about music therapy, and that it would be a good way to stay in therapy.” Her choice can be seen as the result of a negotiating process, in which the therapist wants her to stay in therapy if she wants to discontinue the medication, and only then “be allowed to be psychotic.” The patient does not want to disappoint the caretaker, and takes her advice.
Factors influencing choices: to choose the unknown
Some topics were more often mentioned by the informants than others, like choosing treatment without knowing what would heal them. One informant described the task of choosing both for himself as well as for his next of kin as hard: “I don’t know what they would have chosen for me. It’s hard to say. If you don’t completely understand, or if you don’t know exactly yourself, what actually helps.” Choosing seemed to be particularly difficult for those new to the health care system, like the young patients experiencing their first episode of psychosis. They did not know what would help, which of course made the task of choosing the unknown very difficult.
Participants in this study also could choose between several additional important treatment components, such as cognitive therapy, illness management and recovery skills training, individual job placement and support, music therapy, exercise, and one or several families in group therapy. Many of these services were unfamiliar to them, which also made it hard to choose something you don’t know much about. Participants reported perceiving it as rather arbitrary as to what type of service one could get, and not so much as a ‘real choice’ that they had made. Not all services were available instantly, and furthermore, not all services were equally often suggested by the therapists. Said one person: “I feel it’s kind of random which services you are offered, and where you wind up, really. And if you get a service that helps, in a way, but it is of course difficult to know what helps.”
Some of the informants did not want any treatment regardless of whether the different services offered were purported to be relevant or not. One participant illustrated this point when he said: “They do seem nice and everything, but to me the main goal is to get out of this outpatient clinic. It doesn’t matter if they do sports, it doesn’t matter if… I’m done, I want to be over with this.”
This choice may have been influenced by the desire not to be sick and to go back to life as it was before being affected by illness. Other external factors influencing choices are pressure from one’s family or work situation: Said one person: “But I can’t risk getting ill again, since I have a job now … So I can’t risk losing my job … As long as I get just a little bit of Abilify, I’m safe. It might be that I could have coped on an even lower dose … we’ll see. I might consider that.” This informant discontinued her medication in collaboration with her psychiatrist, but became ill again. Her present choice was influenced by this experience of her not managing well without medication, as well as her wish to stay well in order to keep her new job.
Factors influencing choices: the process of becoming experienced using medication
Navigating medication is difficult in many senses, as suggested by one participant:
“But there is no definite answer to what happens when you are taking a pill. And I think it affects what you think, what happens. Like, compared to forced medication, and voluntarily medication, or voluntary, you might feel a bit of pressure, that matters. Because … then you might think all your problems are due to the medication. And then you think they will go away when the medicine is gone, and then you quit on your medication, and then they don’t go away.”
This informant described a complex relationship with his medication, to a certain extent characterized by fear of unknown effects of a pill, and a fear of side effects shared by most of the informants. Also, the description of how medication can get the blame for all the problems in a person’s life, but then finding that discontinuing the medication doesn’t make the problems disappear, was also familiar to several informants. Quitting medication was not described as an easy way out of a life with illness.
Another informant explained how he knew his delusions included medication in a way that led him to discontinuation, feeling the pills were poison, or pains and aches in his body were perceived as severe side effects killing him. He continued to explain his thoughts about forced medication: “And … I don’t think I would have taken any medication if I just got forced to do it. I think I would have become very sceptical if I were … That is, I would have had delusions about it, being forced to take medications I did not think were good for me.”
The informants often described the effect and side effects different medications had, and sometimes symptoms that they felt they could live with. Having no symptoms might not be the ultimate goal for all patients, like the one who said: “Perphenazine works too well. It removes too much of the psychosis … When I’m psychotic I’m more friendly. I get more … naïve? I become … they called it pronoid. … I sort of haven’t said completely goodbye to the psychosis yet.”
Gaining experience with the various effects medication has on your body makes you perhaps more capable of choosing. Some informants described how hearing voices made them feel accompanied, and how they felt lonely without them. These symptoms were an integrated part of the person, and it felt wrong suddenly to live without them. In this case, choice is influenced by a person’s goal of keeping “the good part” of the illness.
Some of the informants aborted the medication free treatment. This means that they had started or completed the discontinuation of the medication, but then they went back on it later. Learning to understand what works for the individual is often done by practical experience. One informant discontinued his medication, but felt he needed it again; as he said: “I think that someday I can stop. I think that if I discover the right sort of evidence then I can quit the medication. But I know it is smart to use medication too. It sort of soothes the psychosis, so it makes it easier to cope, and do stuff. So the medication helps, no arguing there.”
Factors influencing choices: coercion and freedom of choice
All of the informants emphasized the value of having a choice in their treatment when asked directly if they felt this was important. One informant said:
“It means so much, for me, to have a choice. Yes. To choose. To choose in psychiatry is incredibly important. And that they see possibilities. That it is not always that particular intervention, that one and only particular medication, you know! Because … they have to see the human in a wider perspective.”
In contrast to having the freedom to make choices, involuntary admission to the hospital was a treatment component the informants frequently described in various ways:
“Then I was admitted, because they noticed I had one of those episodes again. And it was still like I was kind of absentminded. A bit … paranoid tendencies again, sceptical towards people around me. But I wonder if the psychosis would have lasted a shorter period of time if I hadn’t been admitted. Because that made everything more stressful. When you are admitted, you are locked up, sort of. And I think I really need to feel free when I’m psychotic, that I can do as I please.”
Another participant described her admission as: “So then I just had to be there, and I didn’t feel it helped being there, because I had no problems, so … Those people in there were suicidal, and really upset, and like…” Later in the interview she was asked whether it got any better with time: “But I felt safe after a while. So now, when I think about it, it was somehow cosy, too. Because it is, you eat, you watch television, and … But it gets really boring in the long run.”
All but one of the informants described more or less traumatic experiences with coercive admission. But the admission experience seems for some to incorporate both the trauma of being forcefully brought to the hospital and medicated in many cases, as well as over time the recognition of being in need of help, and somehow getting that help through coercive admission and treatment. One informant, for example, described how coercive admission was helpful, but at the same time, she had a wish for more choices in that situation:
“I believe it is important to be allowed to choose, because it is your future, your life we are talking about. But if you are too sick so you can’t choose, than we have forced [treatment], and that is a good thing, because it helped me at the time, so I’m all for it. But if you can choose something else, or choose at all, are well enough, or … Then I think it is very important to be allowed to consider different options, and be allowed to choose something else, if it doesn’t work for you.”
Experiences of treatment and the process of personal recovery
Recovery-oriented pathways often require personal agency and responsibility in order to improve one’s life. Several participants expressed a feeling of having to “do the work” themselves. This meant they had coping strategies such as avoiding too much stress, or staying away from drugs, or keeping the daily routine of sleep, rest, and eating well. These constituted a regime of coping strategies many of the informants believed they had to stick to in order to stay well. Choice of coping strategy implies a risk of failure, and with the freedom to choose comes responsibility. Said one person: “I have to do the work. I think a lot of people have helped me along the way, now it’s just me who has to do the work. That’s how I feel. And I intend to do it.”
However, choices influenced by symptoms and illness might not allow for a free, deliberate choice. This informant describes the process of worsening symptoms, and how the care team was unable to intervene:
“What happened to me first was that I started to be a bit bitter at psychiatry in general, I didn’t want anything to do with them at all. So I think it was a bit unfortunate they didn’t catch me at once, because I sent some messages to one of the … They didn’t know what to do, they said, then. But I think it was quite unfortunate they didn’t catch earlier that I was ill.”
Much of the therapy involved learning how to gain control of symptoms so they do not interfere with the lives people want. But this is learned through making both good and bad choices in order to find out what works and what doesn’t. Sometimes people want to choose without the help from others, relying on their own experience and expertise. Said one participant: “So, I have been very determined to deal with all of this by myself. (…) So I have been very independent.” Asked if this meant she didn’t share with the therapist how bad the symptoms were sometimes, she confirmed this: “Yes, believing it would be better. So I have thought that in time things would improve. Because I remembered from previously that I recovered. And I always have.” This informant had a plan with many coping strategies involved to avoid getting ill, a plan developed together with the therapist. But at a certain point, she felt the need to cope on her own, and not involve other people in her decisions on what to do. This strategy might have two outcomes; one person copes and gets well again without help, but others may get worse. Both outcomes might be valuable lessons in the process of recovery.
Many of the participants’ hopes for the future seemed vague, tending more toward getting by one day at a time. One informant described her thoughts on how to enjoy her life in a better way as: “Now I just want to figure out the everyday life, and how to be around myself, and be … in my own company … And have a good time with myself, be happy with who I am, and sort of … get a self-image that fits with reality, and … not be so hard on myself as I have been.” The same informant continued when asked where she sees herself in ten years: “I hope I’m not dead … No, I hope I’m alive, that’s the only thing I hope for. I can’t say I have any … I hope I’m ok. I would have loved to have a husband, and family, but that’s kind of distant to me.”
This quote expresses both a need not to be so “hard on oneself” as a coping strategy, as well as a fear of not surviving the illness. The task of surviving psychosis and keeping hope for a better future is not an easy one.