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

Tim Carey, PhD
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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

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75 COMMENTS

  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.

  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.

  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.

  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.

  5. 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.

  6. 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.