Patient Centred-Care Doesn’t Go Far Enough: We Need Patient-Perspective Care

75
551

A growing appreciation of the importance of involving people in their own health care has seen the development of initiatives such as “patient-centred care.” Patient-centred care has been defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” (Institute of Medicine, 2014) While this definition seems reasonable enough, it appears to be very difficult to translate into practice; particularly in the area of mental health.

It is not always clear in mental health, for instance, that it is patients’ values that guide all clinical decisions. I experienced some of this when I began to develop a system of mental health service delivery which I came to call “patient-led” treatment. The sentiment behind this approach was the rather unremarkable idea that services could be arranged whereby patients, rather than clinicians, determined the frequency and number of appointments. I had reviewed the literature to identify an empirical basis for regular appointment booking by clinicians and, when I couldn’t find one, I set out to discover what would happen if the person receiving the service rather than the person providing it determined the schedule of service provision. I should qualify my comment about the state of the empirical literature by explaining that while there are lots of studies demonstrating that effective treatment outcomes can be achieved with a pre-defined number of regularly scheduled treatment sessions, there are no studies demonstrating that a pre-defined number of regularly scheduled treatment sessions is necessary for effective treatment outcomes (Carey, 2009; 2011).

To learn what the effects of patient-led treatment would be, I established systems so that people wanting to access psychological treatment could make appointments in much the same way that people make appointments to see GPs. I learned that when people are able to control their own access to psychological services they attend about the same number of appointments (on average) as do people who have appointments scheduled for them but the number of missed appointments changes dramatically. It perhaps should come as no surprise that when people make appointments for themselves they are more likely to keep them but it still doesn’t seem to be a widely accepted idea in mental health services.

While the results of this ongoing program of research have been interesting enough, what surprised me more than anything was the reaction of colleagues to this particular way of working. I was told, for example, that it would be professionally irresponsible to allow people with mental health problems to make their own appointments (Carey, 2009).

I was genuinely perplexed by the responses from other mental health professionals particularly given that I was seeing people who were voluntarily attending treatment sessions and the ethical codes for psychologists in both Britain and Australia specify that clients have the right to withdraw from treatment. In fact, the National Practice Standards for the Mental Health Workforce 2013 (Department of Health, 2013) in Australia say that mental health practitioners advise “the person and their family or carer of their right to informed consent for treatment and of their right to refuse treatment” (p. 17). My experiences in implementing patient-led treatment seemed to suggest that it is much harder to provide patient-centred care in practice than it is to give verbal support for the idea.

Perhaps it is easy for clinicians to subscribe to patient-centred care when patients are making the decisions that clinicians think they should make but much harder to adhere to this ethos when a person in the patient role is wanting to pursue a line of treatment (or even no treatment at all) that is at odds with the recommendations of the person in the clinician role. Ironically, I think how we respond when we disagree with the person sitting across from us provides compelling evidence for where our allegiances lie with respect to patient-centred care.

It almost seems as though it is possible to believe one is practicing patient-centred care if one convinces oneself that the treatment decisions being made are genuinely in the patients’ best interests – even if those interests haven’t been endorsed by the patients themselves. Perhaps clinicians can justify telling patients they have a chemical imbalance because the clinicians believe that this will promote compliance with medication regimes which will benefit the patients in the long run. Whatever their rationale might be, it doesn’t seem to make sense to call a particular course of action “care” if it is not experienced as care by the recipient of the actions. What we call the way in which a clinician interacts with a patient is not merely a trivial semantic exercise but is fundamentally important in the way we understand mental health treatments.

In order to be helpful to people experiencing psychological distress and problems of living, mental health treatment providers need to learn about the psychological distress and the problems of living from the perspective of the person experiencing the distress and the problems. Help can only ever be defined by the helpee (the person being helped) not the helper (the person providing help). The first definition offered for “help” at www.dictionary.com is “to give or provide what is necessary to accomplish a task or satisfy a need”. In order to know what is necessary we need to know something about the desires and motivations of the person being helped. If I rush to open a door for a person in a wheelchair but the person in the wheelchair likes the feeling of independence she gets when she does things for herself then it is likely that my helpful gesture will not be experienced as helpful by her. In fact, in my haste to be helpful, it is likely that I have just interrupted an opportunity for this other person to satisfy her need for independence.

Patient-centred care doesn’t demand that we set as our starting point the lived experience of the recipient of the care whereas patient-perspective care does demand exactly this. To provide care that is experienced as caring, the carer needs to find out about the intentions, desires, dreams, and goals of the caree. Sometimes it may be that what one person in a caring role can offer does not suit the preferences of the person in the recipient’s role at a particular point in time. When this occurs, the person in the caring role can explain what she can provide but then it should be left to the person who is accessing the service to decide if he wants to participate or if he wants to look elsewhere. If a person came to see me to have her palm read or her fortune told, for example, I would not be able to help her. I would explain what I could provide and then leave it to her to make the decision about what she needs. In my psychology clinic I spend some of the first session explaining a little bit about the therapy I provide (the Method of Levels; Carey, 2006, 2008; Mansell, Carey, & Tai, 2012) and I let people know that I will leave it up to them to tell me if this is what they need.

The attitudes and beliefs of mental health service providers are crucial in the provision of patient-perspective care. The stigmatising attitudes of mental health practitioners, for example, can negatively impact on treatment outcomes and “coercion and lack of “real” choice” has been identified as one of the themes of provider-stigma (Charles, 2014). It often seems that when people are labelled with a mental health diagnosis they are subsequently denied many basic human rights such as the right to refuse treatment.

A revolution is sorely needed in the way we understand and treat people experiencing psychological distress, however, the revolution won’t necessarily entail a large scale restructuring of services or dramatic overhauls to training programs. Changes such as these might help, but the real revolution will occur when service providers shift their focus away from what they believe is best for service recipients and start to offer services from the perspective of what service recipients believe will be best for themselves. When mental health practitioners view themselves as resources that psychologically troubled people can access to make their lives be more like the way they want them to be then we might see revolutionary changes in clinical services. When clinicians evaluate each clinical encounter in terms of how therapeutically useful they had been from the perspective of the person accessing the therapy we might see a revolution in treatment design and provision.

Patient-centred care may improve general health services but something more is needed for mental health services to be radically improved. Mental health services need to be developed and delivered according to what the people accessing the services require. Designing services in this way requires a genuine desire to understand psychological distress as it is experienced by each person who is troubled. Services will be perceived as helpful by the people accessing them when these people are supported to accomplish the things that are important to them and to engage in life in the way they wish to.

Mental health practitioners can never know with certainty what the experience of psychological distress is for another person but they can listen sensitively about the way in which problems are impacting on a person’s life and they can provide treatment flexibly and responsively being guided by the other person as to the most helpful course of action to pursue. An attitude of patient-perspective care may lead to much more effective and efficient treatments and widespread changes in the way we understand common mental health topics such as insight, treatment resistance, treatment drop-outs, and noncompliance.

Whether patients are at the centre, on the edge, or in some other position may not be the most important consideration in terms of the provision of effective mental health care. The ultimate criterion of mental health service effectiveness might be from whose perspective the service is being provided. For care to be experienced as caring it is the patients not the providers who need to have the final say.

 

References

Carey, T. A. (2011). As you like it: Adopting a patient-led approach to the issue of treatment length. Journal of Public Mental Health, 10(1), 6-16.

Carey, T. A. (2008). Hold that thought! Two steps to effective counseling and psychotherapy with the Method of Levels. Chapel Hill, NC: newview Publications.

Carey, T. A. (2006). The Method of Levels: How to do psychotherapy without getting in the way. Hayward, CA: Living Control Systems Publishing.

Carey, T. A., & Spratt, M. B. (2009). When is enough enough? Structuring the organisation of treatment to maximise patient choice and control. The Cognitive Behaviour Therapist, 2, 211-226.

Charles, J. L. K. (2014). Mental health provider-based stigma: Understand the experience of clients and families. Social Work in Mental Health, 11, 360-375.

Department of Health. (2013). National practice standards for the mental health workforce 2013. Melbourne: Victorian Government. Retrieved 6 September 2014 from http://www.health.gov.au/internet/main/publishing.nsf/Content/5D7909E82304E6D2CA257C430004E877/$File/wkstd13.pdf

Mansell, W., Carey, T. A., & Tai, S. J. (2012). A Transdiagnostic Approach to CBT Using Method of Levels Therapy: Distinctive Features. London: Routledge.

Institute of Medicine. (2014). Crossing the quality chasm: A new health system for the 21st century. Retrieved 5 September 2014 from http://www.nap.edu/openbook.php?record_id=10027&page=R1

75 COMMENTS

    • Hi Jan,

      Thanks for your perspective. I agree. I think forced anything is likely to be counterproductive. I think sometimes, though, forced psychiatry is justified by claiming to be in the patient’s “best interests”. I don’t go along with that rationale but I thought if we adopted a stance of “patient perspective care” then what was or wasn’t in the patient’s best interests might be a lot clearer.

      Tim

      Report comment

    • That is because it is not meant to help the patient – he/she is irrelevant, what’s relevant is other people’s comfort. Family, random people on the street, anyone who’s bothered by the distress of this person.

      Report comment

      • Thanks B. Yes, regardless of the rationale that’s offered it would be extremely difficult to support the idea that the patient was being helped if a “patient-perspective” view of help was adopted. As you say, other people might be helped but not the person experiencing the help. Or, if they are, it’s a lucky coincidence and says more about their resilience, resolve, and ingenuity than it does about the treatment forced upon them.

        Tim

        Report comment

  1. I like it Tim.

    And I believe there are benefits to your approach that are not immediately apparent. I would trust someone taking this approach much quicker. That in the therapeutic relationship is a valuable commodity.

    What came to mind for me was taking my car to a mechanic to have the tyres changed because they’re bald. That’s what I want done, but the mechanic points out that if I don’t have a wheel alignment done, then the new tyres are going to be worn away very quickly and I’ll be back at the workshop sooner than needed. I trust him, do further research into what I’m told, or reject his advice. I’m empowered. The mechanic might know whats best for my car, but not necessarily best for me.

    Forced psychiatry is like taking your car for tyres and having it confiscated under “hoon laws” and crushed before your eyes. If I ever manage to get it fixed, I won’t be taking back there.

    I think in your type of setting that this transformation is more than possible. But the idea of patient centered or led care in the area of forced psychiatry is impossible. It is the imposition of the psychiatrists values on another.

    Report comment

    • Hi Boans,

      Thanks for your support. I love your example of the mechanic. That’s exactly the way I feel about it. Just as the mechanic can advise you what’s possible but the final decision about what you get done to your car is up to you, I think mental health professionals can advise people about what they think might be possible but the final decision of the path to be taken must be left up to the patient.

      People have the right not to live up to their potential just as much as they have the right to push themselves and find out what their potential might be.

      I also agree that patient-perspective care is impossible in a context of forced psychiatry.

      Tim

      Report comment

      • Thanks Tim,

        I thought a little more about this and realised that the ‘negotiation’ that occurs around control whilst subtle, is also vital to outcome.

        As I see you position it is one of “I’m the expert, but your the boss”. It can be difficult for experts to sometimes accept that whilst they may understand the specifics, they do not have the big picture, and quite possibly never will. Taking the position of I’m the expert, therefore I’m the boss” can and does do damage by taking control without knowing the destination the individual has in mind.

        As a company manager I might seek expert advice from an accountant, but they have little understanding of my workforce problems. For some reason deference in the medical area seems to be lacking. It’s my company, and if it goes under it’s my responsibility.

        I will allow you to say, I told you so if you like lol.

        Report comment

        • Hi Boans,

          No need for “I told you so” in this conversation … the dynamics around the patient and clinician relationship are fascinating and the nuances to the control in these situations can also be intriguing.

          My PhD research was on a topic called countercontrol which refers to what people who are being controlled might do to the controllers. I haven’t ever investigated it in the mental health field but I’d be surprised if it wasn’t occurring.

          For me I think we could do a lot better at clarifying what our role as a mental health clinician should be. My idea is that I’m a resource people can use to explore ways of making their lives be more like they want them to be in much the same way that a mechanic is a resource people can access when they want their car to run more like they want it to.

          Thanks again for your thoughts.

          Tim

          Report comment

          • Countercontrol must have been an interesting area of study Tim.

            Im sure there are those that are more than happy to hand over control to physicians etc and rely totally on their expertise. Im just not one of them.

            I’d certainly like to hear more about countercontrol techniques as they could be useful in the unequal power relations between psychiatrists and patients.

            Report comment

          • “My PhD research was on a topic called countercontrol which refers to what people who are being controlled might do to the controllers. ”
            Sounds interesting, is it available for reading? If so, could you link to it?

            Report comment

  2. Absolutely, the patients’ perspective should always be respected. I’ve never in my life, except in my dealings with psychiatric practitioners, met people who were so insane as to believe ignoring a person’s real life concerns, defaming the person with the help a list of lies and gossip from child molesters and a “bible” of “mental illnesses,” then tranquilizing the person, then poisoning the person with six drugs that all have major drug interaction warnings according to the drug.com interaction checker, was “caring” for the person. Psychiatric “care” in today’s society is the opposite of “care.”

    And I agree with the others here, and the United Nations, “forced psychiatric treatment is torture,” and therefore should be outlawed. The doctor who forcibly hospitalized me has now been arrested by the FBI for medically unnecessarily having many patients shipped long distances to him, “snowing” patients, having unneeded surgeries performed on people, resulting in many patient deaths – all just for profit.

    The system needs to change, mainstream medical “care” in the US is sick. Thank you for working to change a very broken and mentally ill system.

    Report comment

    • Thanks for your insights Someone Else. I’d very much like to see forced psychiatry changed. It’s a bit of a sad comment that a conversation such as this is still so relevant and important in the 21st Century but, like you, I think we often use the word “care” in a very strange way in mental health.

      I would argue that the recipient of the intervention is the only person who can judge whether or not what they’re receiving is “care”.

      In Daniel Mackler’s documentary “Coming off Psych Drugs: A meeting of the minds” (https://www.youtube.com/watch?v=Q5EpnVdLvkU) one of the participants made the point that we should do away with the concept of “shared decision making” between patient and therapist and should instead be promoting “supported decision making” of the patient by the therapist. That’s very much in line with how I imagine a patient-perspective mental health field would be operating.

      Tim

      Report comment

  3. Even when it’s not ‘forced psychiatry’ it makes even less sense.

    Why would you go to a see a clinical psychologist in Australia ? All you’re doing is paying to trash your own reputation. At least if someone is claiming you’re a danger to yourself or someone else there might be a point in being forced to do something.

    If you’re just a client it’s a really stupid thing in my opinion to get a referral from a psychiatrist to see a psychologist who then pressures you to be able to maintain a private channel of communication. Essentially treating you like a piece of trash, existing only to make sure you get some negative labels slapped on and make sure everyone’s getting paid, with your money, and/or the government’s.

    Report comment

    • Hi Barrab,

      People see clinical psychologists and other psychologists for all sorts of different reasons in Australia. The people I see in my clinical practice in Alice Springs come along for different reasons but, if I was to sum it up, I’d say people come along to see me because their life isn’t going the way they want it to.

      I didn’t intend to draw a distinction here between psychiatry and clinical psychology. In fact, in the article I wrote above, where I referred to colleagues who opposed the patient-led style of appointment scheduling, they were clinical psychologists. On the other hand, psychiatrists who refer to my service at the moment in the public mental health service in Alice Springs are supportive of it.

      I’m not sure what your experience of psychologists has been but I work very hard not to pressure people to do anything. I’m fairly sure most people I see don’t feel that I’m treating them like trash and, because my clinic is in the public mental health service people don’t pay for appointments. I’ll also don’t use diagnostic labels with people. I’m not saying people don’t come to me with labels but I focus on helping them with their problems of living. My work is outlined in quite a bit of detail in my books about the Method of Levels.

      I’m sorry you’ve had such an unpleasant experience.

      Tim

      Report comment

      • Sorry if I come off harsh, I just agree that the system appears to be set up where the client isn’t in control.

        However ultimately the client is in control, because the client can simply cease seeking the services of mental health professionals.

        I just think it’s something to think about when a psychiatrist or clinical psychologist is writing down “clinically relevant”, things behind a clients back.

        Report comment

        • Hi Barrab,

          Sometimes harsh situations call for harsh statements! I agree that the system isn’t conducive to client control and in situations where the client can cease seeking the services then the harm may be minimised. There are some situations, though, where ceasing to access the services is problematic and people can be involuntarily detained if they try.

          If clinicians were approaching service delivery from a patient-perspective then that might even help with the “clinically relevant” material that is being documented since what is clinically relevant would be judged in terms of the patient’s perspective as well.

          Thanks for your further comments.

          Tim

          Report comment

        • “it’s something to think about when a psychiatrist or clinical psychologist is writing down “clinically relevant”, things behind a clients back.”
          Yeah, that’s awesome. Keeping records on someone without allowing that person full insight into them is really a great way to facilitate a good relationship with the therapist, indeed…

          Report comment

  4. Well like you say, if the client can’t pull the plug then it’s essentially forced and then “patient-perspective care” becomes a shambolic term.

    Beyond dispensing common sense I’m not really sure what a psychologist could ever really be an expert in besides manipulation but I wish you luck in helping people “reach their potential” even though it has a ring of arrogance to it.

    Last post from me in this thread.

    Report comment

    • Hi Barrab,

      I’m not really sure how you come to the conclusion that “patient-perspective care” is a shambolic term because we currently have the situation where some clients in some situations can’t “pull the plug”. It’s precisely because situations like clients not being able to control their own access to treatment exists that I’m advocating for patient-perspective care.

      I’m also not sure what “common sense” is or how its helpful to people and I don’t see my role as the dispenser of common sense. I think, again, perspective is very important when things like “common sense” are being discussed. What is common sense to one is not common sense to all.

      I’m also not sure what would motivate you to wish me luck in “helping people “reach their potential”” although I agree with you that that statement has a ring of arrogance about it. Perhaps you got that idea from this statement that I made in a reply to another post: “People have the right not to live up to their potential just as much as they have the right to push themselves and find out what their potential might be.” You’ll notice here that I don’t say that I consider my role to be helping people live up to their potential. I was using this as an example because it’s a common way of speaking about the way people live their lives. It’s not something I base my practices on. In fact it’s not something I even think about. People’s “potential” – whatever that is – is very much their own business from my point of view.

      Thanks for giving me the opportunity to further clarify some of my thinking in this area.

      Tim

      Report comment

  5. In reply to Boans …

    Hi Boans,

    Yes, countercontrol was (is?) fascinating. Like you, I’m one of those people who would not take the option of handing over control to their GP. I remember having an intriguing conversation with some friends in Scotland while I was living over there. We were talking generally about health care, visiting GPs and so on, and something came up about responsibility for health care. I asked who they saw as being responsible for their own personal health care and they said “my GP”. I was stunned. Then they asked me “Who do you think is responsible for your health care?” and I said “Me of course!”. I’d never thought about the idea that someone else could be responsible for my personal health care so the idea fascinated me. These people were health care professionals as well so it was a really amazing conversation.

    The countercontrol study I did involved going into schools and asking 10 to 12 year olds what they did when their teachers asked them or told them to do things. In the main study I surveyed about 830 students and their teachers. I went into different schools – big schools, little schools, city schools, country schools, co-ed schools, and single sex schools. Across all the classes about 10% of students in each class reported countercontrolling frequently. I asked students what they did and how they did it. Students said they could make their teachers yell, scream, get mad, run out of the room, and so on. And they said they did this by walking around, calling out, not doing what they were asked.

    One student said they could get their teacher to “give me one more chance” and they did that by using “my sweet innocent voice”! It was really amazing stuff. The results fitted so well with what teachers thought was going on but it was the first time this had been investigated systematically.

    Interestingly there was some prosocial stuff as well – students said they could get their teachers to give them free time or help them with their work by doing things like putting their hand up, asking questions, and so on.

    I’m not sure of the extent to which countercontrol might apply in the mental health field. Where it’s possible to just leave I guess there might not be a need for countercontrol but it might be part of the dynamics in situations where psychiatrists won’t let the patient leave.

    Tim

    Report comment

    • I find this fascinating! Did you publish your results? It really supports my long-time contention that 90% of what kids do as “misbehavior” is intentional and goal-directed behavior that meets the child’s needs for attention, autonomy, power, or whatever. One of my biggest beefs with the DSM is that it discounts the intentionality of behavior and assumes that someone acts a certain way because s/he can’t help it. This is often extrapolated into the idea that the brain somehow causes the misbehavior, removing the concept of the child as a causal agent. This, of course, is extremely destructive, as we’re giving the child an “out” any time they misbehave. As a friend’s son diagnoses with ADHD learned to say, “I can’t help it, I have a disability.” Not a great message for kids having to learn about morality, responsibility and ethical decision-making. I find it far more effective to give the kid credit for having developed a strategy, to find out what the strategy is for, and help them develop some new strategies that might accomplish their goal without irritating the adults or getting them into trouble quite so often.

      —- Steve

      Report comment

      • Hi Steve,

        I”m glad you like the idea!! It’s a favourite one of mine too. Ironically, the topic was first mentioned by B.F. Skinner in his book Science and Human Behavior published in 1953. When I first learned about it I was a behaviour management teacher and, despite all the training I had been to about behaviour management techniques no-one had ever mentioned that countercontrol might be one of the consequences.

        I did have a few papers I published from my thesis. How should I get them to you?

        I think potentially, this is a really important area. If countercontrol is going on at all, then for those kids who countercontrol, most school interventions simply give them more opportunities to countercontrol rather than helping them learn different ways of interacting.

        I definitely think it has important implications for many of the students we currently label with DSM diagnoses such as ADHD, Conduct Disorder, Oppositional Defiant Disorder, and so on.

        All of my work centres around the idea of individuals – kids included – being intentional, goal-directed creatures. My book “Control in the Classroom” actually takes up this idea and looks at curriculum delivery from the perspective of students have goals, intentions, desires, and so on.

        Thanks for making contact.

        Tim

        Report comment

        • Honestly, if Oppositional Defiant Disorder was around when I was growing up I’d be diagnosed with it and I’d wear it like a badge of honour. I think this roughly 10% of kids may be the ones who are anti-authoritarian and value their autonomy more than their comfort or safety. One can see that dynamics very well with Milgram experiments when only a minority of people say “that’s not ok” and walk out banging the door.
          These kinds of people are crucial for the societies moral compass but they are also a primary target of social control and both public education and psychiatry are means of achieving this control.

          Report comment

          • Hi B,

            I think there are often very good reasons for a person’s oppositional stance. I think it was why I liked working as a behaviour management teacher so much. Many of the kids I worked with had drive and energy and a different way of seeing things that could be really useful. The questioned the status quo and weren’t prepared to go along with things “just because”. Those sort of people can be really helpful in any organisation.

            Tim

            Report comment

          • Figured something out about how this all worked though.

            I made a written complaint about the misconduct of a Doctor and gave it to a nurse. Nurse shows Doctor, Doctor then deposited the complaint in the bin.

            Made a complaint about my complaint, said they couldn’t find it.

            Criminal for a public officer to do this, but no action ever taken.

            Report comment

    • How interesting Tim.

      My observations in the hospital environment differ significantly in that “baiting” is one sure way to bring staff down on you severely. It does happen, but an example is usually made of the person to ensure compliance by others. Classic terrorist tactics, kill one to scare a thousand.

      Do see a lot more of the “sweet innocent voice” type behaviour, and the prosocial type as well.

      What caught my attention most was the arbitrary way that the ‘rules’ were enforced. I found this as being the most disruptive aspect for patients. In a prison environment the rules are fairly clear, and whilst you might not like them, at least an individual can know when the rules have been broken and sanctions will be applied.

      And yet in an environment where people are already in a state of confusion, the rules (or lines) seem to appear and disappear at random, dependent particularly on the staff member. I think that in an effort to give patients some form of ‘freedom’ that problems are actually created. This seemed to me to be more about the staff not being sure what the rules were, and therefore not being able to enforce them with any consistency.

      It frustrates patients being able to do something at one time, and then not being allowed to do the very same thing an hour later. Many a seclusion occurred because of this. Nature of the beast I guess.

      Report comment

      • Hi Boans,

        Yes, you make a good point. I’m not sure how far the comparisons between schools and mental health units can be stretched. There may be some countercontrol going on in mental health but there are likely to be some important and serious overriding factors as well such as the coercive and arbitrary conditions that can exist in mental health units.

        I would be very surprised if patients weren’t frustrated in the conditions you describe. I think anyone would be frustrated under those circumstances. I’m a fan of fewer rather than more rules and I think the rules need to make sense, be applied consistently, and have some general function of enhancing the activity of whatever context they’re being applied to. Unfortunately, alot of rules seem to be invented sporadically and spontaneously for the convenience of the rule maker. And, as you say, often the creation of a rule can lead to other problems.

        Perhaps some clarity around rules would arrive with the adoption of a patient-perspective approach. If we were to constantly ask ourselves “What does this person need, from their perspective, to live the life they want to live?” and to act on that we might actually need far fewer rules.

        Tim

        Report comment

        • The rules need to be agreed on by both parties. If they are not expect people to break them only to preserve their dignity and independence. I personally find it laughable to hear any psychiatrist or staff member who is working on a closed ward where people are “treated” against their will moaning about patients being disrespectful, violent and what not. You’re asking for it and in my opinion you get too little of it.
          Human rights abusers deserve to be spit on by their victims if that’s the only thing the victim can do.

          Report comment

          • Just as an example, we have laws that protect mental patients from abuse. The penalties however are half of those for abusing animals.

            We regularly see people charged for abusing animals, but the laws relating to mental patient abuse have NEVER been used.

            They must be doing something right.

            Report comment

          • Can’t help but wonder if me giving lessons to the other patients in how one could expand the bars in the smoking area with the use of a plastic chair had anything to do with the decision to release me.

            Or my building inspection that identified a number of OHS issues that could result in the ward being shut down.

            In fact I was quite a handful really. Walked a very thin line. Still when you know your fighting for your life, and to not have acid poured onto your brain (basically) you think quite fast on your feet.

            Report comment

      • “It does happen, but an example is usually made of the person to ensure compliance by others. Classic terrorist tactics, kill one to scare a thousand.”
        100% true observation. The thing they fear the most is a person like McMurphy from “One Flew Over the Cuckoo’s Nest” – someone who won’t give up even if that puts him in danger of being abused and therefore shows that resistance is possible.
        I think one of the reasons they were so keen to discharge me, in addition to my family, was the fact that no matter what they did I resisted and did it with a blast for everyone to see.

        Report comment

        • Fear Randle Patrick McMurphy? They destroyed him, and Chief Branson performed the coup de grace. What’s to fear? He’s got more to fear from them than they ever had to fear from him. They are society’s answer to people like McMurphy.

          How about a little realism here? I’ve been through the mental hospital system, too, on more than one occasion, but I got out because I didn’t resist. Resistance in a mental hospital is fool hardy. One can only play along with the gag for as long as it lasts until it plays itself out. Resist, and they do to you what they did to Randle Patrick McMurphy.

          Report comment

          • Hi Frank,

            I don’t know about McMurphy or Branson but I think you provide a really useful insight into the importance of the patient-perspective approach. To you, resistance is fool-hard and you found another way to navigate through the mental hospital system. To others, however, resistance is important. The patient-perspective approach accommodates both points of view.

            Tim

            Report comment

          • Oops, I meant “Chief” Bromden. You know, the native American psychiatric inmate, and protagonist of the novel, wielding the pillow.

            I’m just saying that if claiming to have a “mental illness” will get you less time than not claiming to have a “mental illness”, you do whatever you have to do to get out of the hospital, even if what you do is to lie. It’s a game, I know, but it ends the moment one is discharged. If one doesn’t play the game, one had better have some good legal support, or ones chances of release become quite dismal. The criminal justice system may have an Innocence Project, but in the mental health system, the presumption of incapacity, of “sickness”, generally holds.

            Were a patient to refuse to take drugs, for instance, the hospital has a number of goons to hold him or her down, and to stick him or her in the posterior with a hypodermic needle. This procedure can be repeated an endless number of times. The patient who doesn’t get it then is deemed “sicker” than the patient who does. It being the lesson that resistance gets you more rather than less severe (mis)treatment.

            Report comment

          • Well, that depends. Thanks to in part the very book/movie they can’t do a lot of these things anymore (that of course varies from country to country). One of the cases like that was Gustl Mollath in Germany:
            http://en.wikipedia.org/wiki/Gustl_Mollath
            They couldn’t force drugs on him and he kept fighting the system for 8yrs until he got released. I’m pretty sure they didn’t like him writing letters and bringing in lawyers and being non-compliant but they couldn’t do anything against that. There are ways to play the system so that you can be a maximum pain in the a** without them being able to contain you enough. Especially turning other patients against them is effective – the last thing they need is to have a bunch of angry people to deal with instead of frightened sheep. The thing is – as much as I personally believe that some people who work in these places are sadistic in nature, most are just normal humans who are more interested in their own peace and comfort than in having to constantly deal with a crisis (well, let’s call it banality of evil). It works quite well in dealing with many institutions as long as there are minimal protections from getting killed or maimed by them (I agree – in psychiatry it’s not always the case so there are risks involved).
            Of course being nice and compliant may be a faster and less risky way of getting out but it goes against my personality (I know, I have a genetically determined personality disorder and my brain has an imbalance or sth). There is such things as courage. If more people were “non-compliant” in face of illegitimate authority, even at risk to their own life we would be living in abetter world.

            Report comment

          • Well, the good thing for me is that the only effect these drugs have on me is to make me more angry. I believe it’s called “paradoxical effect”. Unless I get a dose to make me unconscious I’ll only be more trouble on them and they can’t keep someone unconscious all the time.

            Report comment

          • Hi Frank,

            Unfortunately, I don’t know Chief Bromden either! Clearly my reading isn’t as broad as it could be. The point from the patient-perspective approach though is that the idea that “you do whatever you can to get out of hospital” can only be individually determined. One person’s preferred means of getting out of hospital will be different from another’s. Even the desire to get out of hospital will be different for different people.

            The lesson that resistance gets you more rather than less severe treatment will, similarly, have different meanings for different people. Some people are prepared to go to extraordinary lengths to preserve their sense of autonomy. That’s a decision that can only be made by individuals. At least, that’s the idea from the patient-perspective approach.

            Tim

            Report comment

          • There are ways to resist even in the face of the most brutal oppression. See James C Scott Weapons of the Weak.

            I agree with Frank that it is best to feign weakness in order to navigate ones way out of the system. Is it the case though that this is the end of the “game”?

            Armed with knowledge of what occurs behind enemy lines, and access to their ‘camp’, puts one in a powerful position.

            “Know you enemy, know yourself, and in 100 battles you will not be in peril”

            “Avoid your enemy where he is strong, and attack where he is weak”

            Sun Tzu.

            Report comment

          • Hi Boans,

            I definitely agree that there are many ways to resist oppression and your post provides a nice example of the importance of the patient-perspective. The fact that you agree with Frank should be noted as well as the fact that there will be people who prefer a different path. Suggesting that there is one right way to resist or one right way to get out of hospital is a bit like mental health professionals suggesting there is one right way to think about and treat psychological distress.

            We need to find ways (in my opinion) of understanding, acknowledging, and accommodating different preferences and opinions without attempting to persuade people to come around to our way of thinking.

            Even with my passion for the patient-perspective approach I’m very aware that this won’t be everyone’s cup of tea. I’ll do what I can to explain the approach as best I can and I really enjoy discussing it with people who are interested but I’m not inclined to spend time persuading people that they should subscribe to this way of thinking. People need to, and will, find their own way.

            Tim

            Report comment

          • Sure Tim, and I guess this comes back to the issue of countercontrol methods.

            Who knows how many people willingly walking into the showers in Germany. I can’t help but wonder though if they had ways and means of resisting that they might have made another choice. Compliance behaviours can be tricky when being observed from outside.

            I guess my point is that we can not know how ,any patients comply willingly. So given methods of resisting we will know if their making a choice, or are being forced.

            Information is power, lets educate people on methods of resisting.

            Report comment

          • I think recourse to the law would be a great method if it were available.

            What I’ve found in my State is that there is an appearance that there is recourse, but the reality is that the watchdog has been drugged and had it’s teeth removed.

            So those brutalising patients merely laugh at anyone who becomes “grandiose” and says they will do something about the abuse.

            Fully aware that the patient has no effective protection, one doesn’t have to look very far to observe the rampant abuses that are occuring.

            Report comment

          • Hi Boans,

            I’m not sure I follow your logic about being able to tell whether people are making a choice or being forced but I guess from a patient-perspective stance that’s not such a big problem. For me the crucial issue is “from whose perspective is treatment being devised and delivered?”. Alot of problems would be taken care of if the patient’s perspective was the bottom line in mental health service delivery.

            Tim

            Report comment

          • Hi Tim,

            I believe in a God so my logic is questionable lol.

            I guess what I’m trying to understand about the patient perspective approach are the reasons for it not being the dominant approach, and where are the limits on it.

            As we briefly discussed it certainly wouldn’t apply to forced psychiatry where the one size fits all approach of ‘lock em up and drug em’ applies.

            I really like the idea of services being tailored to suit a patients needs (and wants for that matter). Empowering with choices would seem central to that, and from your description of your initial interactions with clients that’s what I see you doing. Informing them of what you offer, and can that be tailored to suit their purpose etc.

            Certainly cost would be one limitation, resources…usual suspects. But it also seems that the PPA could be achieved through educating mental health workers in how easily it may be applied, and the benefits for both parties. As is the nature of human beings though, we tend to try and make our lives easy, and if that comes at anothers’ expense….great.

            I’ll ponder the issue some more.

            Report comment

          • Ken Kesey, merry prankster and pilot of the magic bus Further, wrote the book. Jack Nicholson starred in the movie.

            Boans, it wasn’t a matter of “feigning weakness”, it was a matter of not being stupid. I would say anything to get out of the hospital because I know that once I’m out they have no further hold over me. Basically you’ve got a situation where the hospital staff says the patient who confesses to having an alleged “mental illness” is more healthy than the patient who claims to be “sane”, and that the patient who claims to be “sane” is “sicker” than the patient who confesses to having an alleged “mental illness”. You don’t get discharged by claiming to be “sane”, you get discharged by confessing to an alleged “mental illness”. Either you confess, or the torture continues indefinitely. Truth doesn’t matter in the institution anyway. It’s all a matter of giving them the kind of lie that will get you through the gauntlet to your freedom. Once out of the rabbit hole, maybe truth can matter again, but in the hospital/prison, it’s their world, and their “reality”.

            Report comment

          • “Fear Randle Patrick McMurphy? They destroyed him”
            Pathetic people like that destroy what they are afraid of.
            In any case how one behaves in a situation like that is a matter of personal objectives and the severity of abuse. In the end it’s not relevant what the victims do – the relevant part is that the perpetrators should be brought to justice.

            Report comment

          • I wish it was that simple, B. The mental health cops have been screening people for mental health for a few years now. We’ve been screening people for normality. Nobody has found either, but that doesn’t prevent people from locking people up because they think that there is such a thing as a “mental illness”, and that it makes the people contaminated with it a “danger to self and others”. If might is right, well, this is where a good lie comes in handy. I’m not talking joining them really, but I am talking putting a little bit of distance between yourself and their mess. We’ve long had a convenient way of confusing injustice with the human condition, but that’s never going to make it right. Stupidity is a matter of getting caught up in what can only lead to a poor end. Ultimately, if one doesn’t look out for oneself, well, they’ve got people to look out for one, and you don’t want to go there.

            Report comment

          • Hi Boans,

            I think there are probably a few reasons for the patient-perspective approach not taking off more widely. One is the view expressed so eloquently (and incorrectly) by my colleague who didn’t think depressed and anxious people were able to make choices. We have all sorts of “legitimate” ways of disregarding the patient’s perspective – lack of insight is one of them. I’ve often wondered why it is always the patient who lacks insight when the patient and the clinician disagree over an interpretation of the patient’s problem. Could it not also be the case that the clinician lacks insight into the patient’s problem? That possibility never seems to be on the table for consideration.

            A second reason for resistance to the idea is that, if the patient’s perspective was adopted, then patients would not always make the decisions that the clinicians think they should make. I think many clinicians have some idea of the “right” sort of life the patient should be living and, if the patient’s views were taken as the guide, the patient might not go down the path the clinician thinks they should go down.

            In many cases it seems that clinicians judge patients to be “getting better” the more that they agree with the clinician and the more that they behave as the clinician thinks they should behave.

            In terms of where the patient-perspective would apply, I guess I haven’t thought of applying it in particular areas, I’ve thought of replacing the current system with it. You’re right, it certainly wouldn’t apply to forced psychiatry. In fact, it’s the antithesis of forced psychiatry. We would have to figure out a different way of dealing with risk in a patient-perspective approach. From the little bit I know of the Open Dialogue approach in Finland it seems to be very much aligned with a patient-perspective approach.

            Cost is certainly a consideration in overhauling any system but some of my work indicates that it may actually cost less than the current system. When we moved to a patient-led appointment booking system, for example, we increased service capacity and reduced waiting times with no additional staff or extra resources. The only change we made was the way appointments were booked for treatment.

            There would no doubt be problems with the system but I don’t think there’d be any problems that were insurmountable or that are as bad as some of the problems with the current system. I’ve also found that there are many benefits. I have the feeling that there are lots more benefits that haven’t even been realised yet.

            I think the clinician-perspective approach has had a decent run – I’d like us to give the patient-perspective approach for a while to see where that takes us.

            Tim

            Report comment

          • Yes, sorry Frank. Probably a bad choice of term on my part. I know that until you take on the role they wish to assign then you will be subjected to all forms of abuse. So lying, deceiving, whatever it takes to get out.

            I know that I resorted to attempting to bribe the psychiatrist. Said to him, look Doc, youre lot caught me unaware by jumping me in bed with tazers, so i’m in my pyjamas and haven’t had a shave.

            Let me go home, shower and put my suit on and we can meet at the Hyatt and i’ll buy you lunch, and we can discuss this further. Got to be better than the slop they serve in this place.

            Get out by any means necessary.

            Report comment

          • Can’t say I’m really for “patient-perspective care” so much either, impatient-perspective care maybe or, better yet, shedding the patient role entirely. Change the heading of your post, Tim Carey, to Patient Centred-Care Doesn’t Go Far Enough: We Need Patient Liberation, and I’m with you.

            Report comment

  6. Hi B,

    In relation to my countercontrol thesis, I’m not sure how to go about linking to my thesis but I had three papers published from the work that I did:
    1. Carey, T. A., & Bourbon, W. T. (2004). Countercontrol: A new look at some old problems. Intervention in School and Clinic, 40(1), 3-9.
    2. Carey, T. A., & Bourbon, W. T. (2005). Countercontrol: What do the children say? School Psychology International, 26(5), 595-615.
    3. Carey, T. A., & Bourbon, W. T. (2006). Is countercontrol the key to understanding chronic behaviour problems? Intervention in School and Clinic, 42(1), 5-13.

    Also, my book “Control in the Classroom: An adventure in learning and achievement” explores the idea of students as controllers and how this can be facilitated and supported in the classroom.

    Tim

    Report comment

  7. Dr. Carey, The predominance of the current paradigm of “care” (no way around the quotes…) creates more than one self-fulfilling kind of problematic cycle of things “proven” by observation. While Robert Whitaker has paid close attention to the process of mistaking the true nature of outcomes, the process of restrictively employing a default attitude of advocating for non-patients (society, family, other caregivers) over patient advocacy itself, directed by understanding of patients’ goals, certainly works against obtaining the facts needed to augment all the understanding that science can bring to bear on mental health issues.

    People who work in the system and people who write about it, too, mostly prefer to believe in the staff and architects of the care on offer as the benefactors of their clients until proven otherwise. But as you point out, the attitude of expropriating patients’ rights to choose their care level contradicts this very principle that guides the understanding of the benefit to a hospital stay.

    That you can’t visit mental hospitals without giving up your freedom is really disgusting. It’s double jeopardy and official abrogation of your civil rights coming and going no matter what you try if you are once ever “held”. How can people who twist arms to get the reponse they want purport to believe that they are obtaining accurate evidence of anything about persons except what matters for instilling docility? Yet, just look–the mainstream view (see Al Frances) just is that coercion is a bygone thing.

    People just really do like to believe that medical services specific to the mental disease detected happens to save those who won’t save themselves. It’s as bad as ever.

    Report comment

  8. Hi Travailler-Vous,

    Thanks for taking the time to post your thoughts. I agree that, in many ways, things are as bad as ever with the possible exception that there are now forums like this to give a voice to people who would otherwise be silent (or should that be “silenced”) as well as a venue for interesting and lively discussion.

    Tim

    Report comment

    • Dr. Carey, Thank you for coming through with the positive attitude angle in acknowledging my reaction to the care on offer. The attempt to rule out subjectivity, to squash the client’s self-initiative and disavow it’s worth is so obviously not what it takes to ensure authoritative scientific work in–for Christ’s sake–caregiving. I still cannot be sure I would ever had someone step up to help me get my symptoms appropriately discriminated ever, at all, if I had stayed with the orders and instructions so far given. No one will admit that their perceptions rule their understanding quite beside the point of what the patient tells them once the opportunity arises to shape the reports according to what is official and approved as the disease at hand, no matter that the ideas never click or produce results, with approximately one exception in an out of state for me female psychiatrist, and just her in thirty plus years that I’ve been at this. Athough maybe one other lady doctor would have stayed receptive to trauma talk, but the closed-minded group in town here did not keep Ms. Cowboy Boots on for more than the one round at which I saw her.

      Depersonalization is neither easy to describe, nor is it totally unique langauge from the labels that get you tethered to the system as payee for life. Guess which way rules the roost. When it becomes suddenly severe, as it can, it can be terrifying, and it never did any good to have people insist that I was having racing thoughts or asking if I felt like hurting myself every fifteen minutes or if I was hearing voices when how I felt was almost like I’d disappeared. What a joke and what a travesty to examine this brand of expert advice. Only finally has a book been worth it, but even this has meant a good long while to apprehend the lessons for my personal experience, as in every case there are other ways to say what’s up. But every person paid to be of help has been content to look on and dictate that it’s what they see the most of and get to call their own charges forevermore, and not once has an inquiry in my favor counted. Both doctors and therapists knowledgeable enough to have helped me actually showed their dislike of getting involved against the grain, no matter that it meant me wasting my life. You are right that it’s these last resorts, and the most severe critics of the field, in addition, that we have got to keep in mind.

      Report comment

      • Hi again Travailler-Vous,

        I think it would help to talk alot more about the importance of our perceptions in our ongoing daily conduct. It’s one of the reasons that I’m so interested in Perceptual Control Theory (www.pctweb.org) – it places perceptions as central in understanding behaviour.

        I think we could learn a lot from the people experiencing the problems but that would first mean having to accept that we don’t know what they’re going through.

        Tim

        Report comment

        • Dr. Carey–I read your conference paper on that website and printed a copy for my files. I gather that some further acquaintance with the theory would help me see old experiences that lacked luster under at the time under a new lens, and understand that that means deriving some additional means of justification for any critical take on the shortcomings of the clinical approaches. Since we know that the main problems with this system involve the unexamined power relations, the intense and often concealed pressure to conform to expectations of what these “private” interactions “mean”, and the profound denial of the steadily contrived support for the status quo in all aspects, I like the idea of having a way to introduce complexity into my response. Again, complexity is assumed imaginary once modern behavioral approaches begin to show who’s really boss, right?
          Thank you for this link suggestion.

          Report comment

          • Hi Travailler-vous,

            I hope you find the information helpful. For me, learning from and about PCT has been a revelation. PCT shifts the focus away from behavior as it is observed by external onlookers to behavior as it is experienced by the behaving entity. It really does offer a new perspective on many things and suggests some possible reasons for why we are not making the progress we could be making.

            I found that it does take some effort and more than a little grappling with concepts to really understand PCT but the effort has been well and truly worth it in both my professional and personal life.

            Tim

            Report comment

  9. Thank you for this piece Dr Carey, I found it very interesting and agree with many points.

    I’m curious as to your views on the right to refuse treatment alongside the presence of involuntary assessment and treatment as ordered by emergency services, psychiatrists or the courts (here in QLD, Australia). I am wondering whether you agree with the right to refuse treatment if someone is a danger to themselves, or perhaps more importantly others. Or in the case of a criminal act where someone is deemed not fit for trial and referred by the court for involuntary treatment, should they be allowed to refuse treatment? And if so, what happens then?

    Once again, excellent article, I look forward to hearing from you.

    Report comment

  10. Hi Daniel,

    Thanks for adding to the discussion. I’m really glad you liked the article.

    I think the safety of people is important. Personally, I like the idea of living in a society where those individuals who want to hurt people are humanely and compassionately prevented from doing so. I also think, however, that it would be useful to distinguish between measures taken to prevent people causing harm and “treatment”. It seems to me that there would be fairly widespread agreement in averting harm to people but what should happen to the harmer once the harm has been averted is less than straightforward. In the spirit of the article that started this discussion, even when people seem like they might cause harm I still think it is important to seek to appreciate their perspective and world view when deciding what to do next.

    It’s puzzling to me that we’re continuing to discuss and deliver involuntary treatment in the 21st century. I’m not even sure that involuntary treatment is possible with psychological and social treatments. We can force people to turn up to therapy but we can’t make them engage or process the information. In this sense “involuntary treatment” is something of an oxymoron. Some years back I ran an anger management program and a substance abuse program in a prison where the prisoners received favourable reports for attending and participating in the groups. My strong feeling at the time was that the prisoners got very little out of the group in terms of helping them to think differently about their lives – even though they ended up with a positive report at the end of the group.

    The situation with psychiatric and medical treatments is a little different because people can be administered treatments like medication and ECT against their will. Even though it is possible to provide treatments this way, I’m not aware of any compelling rationale or convincing evidence for actually providing treatments in this way. In fact, given that the harms of medication are often minimised and the benefits exaggerated, I think there are some very good reasons to argue against involuntary treatment even when it is possible.

    There are broader issues as well to consider such as what it is that we are treating when we provide treatment involuntarily.

    If safety is threatened then I think the threat to safety should be addressed but, once safety has been restored, any treatment that follows should be guided by the perspective of the patient.

    Do these ideas speak to some of the things you were wondering about?

    Tim

    Report comment

    • Hi Tim,

      “It seems to me that there would be fairly widespread agreement in averting harm to people but what should happen to the harmer once the harm has been averted is less than straightforward. ”

      I struggle with this too, do we take the pen, or the prescription pad? lol

      I know that I also struggle with the way discussions are framed around the issue of involuntary ‘treatment’. I wonder if it is only in Western ustralia where the spirit of the Mental Health Act has been perverted to be used to ‘treat’ a young woman who has not cleaned her house to her mothers standard and has had a couple too many boyfriends? Personally I think ‘treating’ the mother for her anal retention may have been the better option.

      It is easy to assume that involuntary treatment is being used for those who have been extremely violent and aggressive towards others, until one actually examines the perverted and distorted uses that the Act is being put to. Domestic disputes are certainly a growing area, with police pushing people who they are having difficulty dealing with into the mental health system. A drunk/ stoned man unhappy with his wifes flirting with another man? Threaten to pack rape him at the station and drop him at the mental hospital. They administer drugs and are amazed at how well they work as they watch him sober up lol. I was more amazed at how the human body recovers from large amounts of alcohol and cannabis myself but…..

      Anywho, hope your Christmas and New Year were good.

      Report comment

      • Hi Boans,

        You’ve highlighted the slipperiness of the slope upon which “involuntary treatment” sits. Part of my motivation in writing this article was to encourage a shift away from an “I know what’s best for you” attitude and towards an understanding of people as active, purposeful creatures who have their own ideas, dreams, and hopes about the sort of life they’d like to live.

        If we thought of “treatment” as a resource people could use to make their lives be more like the way they want them to be, then, from this perspective, it would be very hard to even construe what “involuntary treatment” might be.

        I’ve had a terrific Christmas and New Year. I hope yours has been to your liking!

        Tim

        Report comment

        • “Part of my motivation in writing this article was to encourage a shift away from an “I know what’s best for you” attitude and towards an understanding of people as active, purposeful creatures who have their own ideas, dreams, and hopes about the sort of life they’d like to live. ”

          That’s just beautiful Tim, and exactly what my Muslim friends are saying about ISIS. I’m assuming our security services have a close eye on Muslim psychiatrists as they could do nothing but support ISIS if they are Sunni.

          For all I have to say about psychiatry one of the most honorable men I ever met is a psychiatrist, who also believes that mental health services should be a resource to assist people in making their lives better. He is a rare individual though from my experience.

          Christmas? mmm I live in AD these days not BC. After Detention, not Before Concern lol. Not a day worth living since I was introduced to Mental Health Services brutality. Glad it doesn’t say in the DSM to “strike at their necks, and cut off their fingers” for not being a ‘believer’. Guess in a strange way they fixed the rollercoaster that was my life before, it’s all the same now. Collateral damage I guess, and I hope my daughter and grand children understand some day.

          Report comment

LEAVE A REPLY