• mentalillness 1 1

Confab #1:
Should mental health service users be called consumers, patients, survivors, citizens?

 

The words we use matter. And the lexicon of behavioral health care has changed significantly over the past 50 years, a transition that reflects seismic shifts in the way individuals with mental illnesses are now treated. Words used to refer to an individual service user—“patient”, “consumer”, "survivor”, or “citizen”—convey a particular set of sociopolitical and biomedical values.  Participants of the first ScattergoodEthics Confab debated a question at the heart of behavioral health care: How should we properly refer to mental health service users? Here are their perspectives.

 

  • dr baum baicker 1

We are all patients, consumers, clients, and citizens; it just depends on what is needed at a particular juncture in treatment. Sometimes we want to be cared for, sometimes we want choice and control, and always we are human beings worthy of being respected.

-Cindy Baum-Baicker, PhD; Board Chair, The Thomas Scattergood Behavioral Health Foundation

  • Bleier

Even now, listen to people speaking about encounters with their clinician. The highest compliment they pay is "s/he took good care of me." The implied and cherished relationship is Doctor-Patient.

-Henry Bleier, MD, Chief, Consultation Liaison Psychiatry, Corporal Michael J. Crescenz Department of Veterans Affairs Medical Center (CMCVAMC), Philadelphia

  • Marc Forman

Service users are patients, a word derived from the Latin patiens, one who suffers. Someone who requires mental health services is suffering and he/she wants relief. “Clients”, “consumers”, “citizens”, are not necessarily suffering. One of my British friends, a pediatric neurologist, wryly noted “ Whores, accountants, and lawyers have clients: I have patients.”

If I am ill, mentally or otherwise, and I want my distress to be relieved, I wish to receive help from someone who can, I hope, relieve my suffering. I want to receive help from someone who knows more about my condition, and how to treat it, than I do. I am willing to put myself in a dependent position in order to receive help and relief of suffering. I know that having a doctor who is paternalistic, or maternalistic, in this relationship, has been disparaged, as I am supposed to be an “equal”, in terms of my status. But rather than being an equal, I am a learner, who needs help. However, I still can ask questions of the doctor, and take his advice...or not. Being a patient does not have to mean being passive. I am not voting as a citizen in this search; I am not buying an apple as a consumer; I am not signing a contract as a client ( “client”, derived from the Latin “cliens, a follower or retainer”), a term which does not include the critical element of suffering.

-Marc Forman, MD, Emeritus Professor of Psychiatry and Pediatrics, Tulane University School of Medicine; Senior Clinical Consultant, Community Behavioral Health, City of Philadelphia

  • leahmlkcroppedd

Mental health service users are people first. They were people before they received a diagnosis, and we must continue to emphasize and honor their essential personhood following diagnosis. A person-first identity (as opposed to an illness-first identity) is critical to empowerment, fosters hope and a sense of personal responsibility, and sets the stage for wellness and whole health. People who use services already face a variety of labels imposed by others to describe and categorize their experiences; they may or may not embrace these labels. Person-first language has been widely adopted in the disability world; the impetus for this shift came from persons with disabilities themselves. I would like to see this framework applied to the mental health realm as well.

-Leah Harris, MA, Director of Consumer Affairs/Trauma Informed Care Specialist, National Association of State Mental Health Program Directors (NASMHPD)

  • Amy Lutz

Recasting mental health patients as consumers, clients, or citizens reinforces this bias. These terms connote agency, capacity, and judgment – which are all obviously compromised in the “really sick.” While the legions of “worried well” might initially find these euphemisms less stigmatizing, true acceptance, in my opinion, is much more likely to come from adopting the vocabulary of physical medicine, in which everyone – from the person who needs three stitches to the one who needs brain surgery – is a patient. That doesn’t mean she is surrendering all control to the omnipotent physician, but it does mean that she needs expert care that she is incapable of providing to herself – which is, after all, the reason why both the “worried well” and the “really sick” need the help of mental health professionals.

-Amy Lutz, cofounder and president of the EASI Foundation and the author of the book Each Day I Like It Better: Autism, ECT and the Treatment of Our Most Impaired Children.

  • puneet033

From an anthropological perspective, terms used to describe mental health service users are based in different cultural values around mental distress. These terms are also relational: individuals adopt various identities depending on what they seek from mental health institutions. Similarly, mental health providers use different terms depending on how they position themselves toward service users. For example, if an individual seeks medication or respite through hospitalization, they will adopt the role of patient.

Mental health care providers trained in the cultural view that mental distress is disease (that is, something biologically out of order) also refer to service users as patients. Medicalization of mental illness affords possible role advantages -- when an individual is considered "sick" in our culture, they are relieved of societal responsibilities (e.g., to work or find their own housing), and in some cases, service users may (unconsciously or consciously) seek out the sick role to obtain its benefits. Service users seeking autonomy over their care and those who reject the notion they are sick are more likely to refer to themselves as client or consumer. Providers who reject medicalization of mental distress will also use the terms “client” or “consumer.” These terms have emerged in the popular lexicon in resistance to biomedical pathologization of mental distress. In sum, terms used for mental health service users connote both cultural and political-economic meanings.

-Puneet Sahota, MD, PhD; Psychiatrist & Anthropologist, University of Pennsylvania

  • George Schaeffer

Starting with the assumption that a mental health service user constructs an identity from her or his perspective of that service and its utility in getting functional (and other) needs met, it can be said that notions of users as patients, consumers, survivors, clients and citizens are socially constructed fictions about one’s mental health status vis-à-vis the provider/political system. Advocacy to call mental health users “consumers” hoped to give them a market economy freedom to choose how to be served by providers. It pushed government to endorse a customer-service model with the mental health providers it funded and promised to give to consumers the power to choose with their feet. If they were unhappy with the services they were receiving they (or their families) could find or create others. Or, so the story goes.

This ostensible “freedom of choice” even led to the opprobrium surrounding the terms “mental illness” and “psychiatric diagnosis.” Consumers are choosing not to have their identities constructed around these medical model fictions because by definition they obviate their freedom to inform medical “practitioners” on the best way to serve them and thereby erode the quality of the customer service they expect. To value one identity over another is to submit to the tyranny of literalism which prevents us from seeing through the images we construct. Such literalism does not promote healing. According to James Hillman and others, this psychological process, seeing through and understanding the images we embody as persons and as groups in a society, is the key to the inner and outer freedom from illness we strive for.

-George Schaefer, MSW, Friends Yearly Meeting; Therapist in Private Practice

  • Andrea Segal

The terms client or consumer should be avoided when referring to an individual seeking mental health services. Use of these terms implies a business arrangement between two parties, one providing a type of service with the client receiving the service. While, in essence, a mental health clinician is in a business relationship of this sort with those seeking his or her care this is not the primary relationship. It is detrimental to the primary relationship— the therapeutic relationship— to view their relationship as strictly a business arrangement. Part of the therapeutic process involves the patient or consumer trusting that the provider has their best interests at heart, and this trust is difficult to establish when the language used to describe their relationship revolves around a type of contractual monetary arrangement.

-Andrea Segal, MS, Research Coordinator, The ScattergoodEthics Program

  • Andrew Siegel 3

Whether mental health service users can be thought of as patients, consumers, or survivors, depends on the level of analysis. At the bedside (clinical/treatment level), the goal is improvement in subjective and objective measures of health and so clinicians have to tailor their approach to the particular service user identification. If the user identifies as a 'patient,' the clinician takes on a more paternalistic stance. If 'consumer,' the approach is collaborative. At the level of clinical research, different considerations influence how mental health service users are identified. Our current research model assumes a certain validity to the biological model and so the 'survivor' paradigm is probably antithetical. At the level of mental health policy, the lens through which service users are viewed is dependent on the particular special interest group's agenda and public opinion.

-Andrew Siegel, MD, Fellow in Consult Liaison Psychiatry, University of Pennsylvania

  • sistid 120

Mental health service users are patients. A patient is an individual who is suffering from and living with a particular malady, who needs medical help, and who is provided with particular social accommodations. Critics would point out that the word ‘patient’ conveys the parentalism of health care providers. But there is an undeniable power asymmetry between patients and their physicians. This fact need not be a bad thing. Well-trained, compassionate, and virtuous physicians should be entrusted to protect, treat, and hopefully heal their patients. This does not mean patients should be passive in their own care—they should be engaged in a shared decision making process. But the word ‘patient’ reflects the reality of an ill individual’s vulnerability, which other terms—such as ‘consumer’—paper over.

-Dominic Sisti, PhD, Director, ScattergoodEthics Program & Assistant Professor of Medical Ethics, University of Pennsylvania

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