What s in a Word? and Who s the Expert?

Transcription

1 What s in a Word? and Who s the Expert? CATHERINE ADAMS, LMSW, ACSW, CAADC ETCH CLINICAL DIRECTOR MICHIGAN FEP TRAINER AND CONSULTANT 2 Language why does it matter? 1

2 3 I would entreat professionals not to be devastated by our illness and transmit this hopeless attitude to us. I urge them never to lose hope; for we will not strive if we believe the effort is futile. --Esso Leete, who has had schizophrenia for 20+ years If you have ever received a hopeless message about your recovery, what was the source of that message? Hope in Mental Health Care Survey: I Got Better, Respondents 2

3 I was told [by mental health providers] I had a life-long disease that I could never recover from, but that I could learn to 'manage. I was repeatedly told I could not reach my goals or do what I wanted to do whether it was finishing school, having a career, being off SSI [Social Security Income], and living independently. I was told this by family, high school personnel, mental health providers/hospitals. When I told the Social Security office that I was starting a full time job at a living wage, the woman told me Sometimes these things don't work out. Mom and son at an outpatient appointment with psychiatrist: Mom: I just want my old Greg back. Psychiatrist: You will never have your old Greg back. 3

4 You say potato.i say potato.but we can t call the whole thing off! 7 Deficits-based Language 8 EXERCISE 4

5 9 10 Don t ask What is the matter with Pat? Ask, What matters to Pat? Patricia Deegan, PhD 5

6 What is psychosis.really? Psychosis happens on a spectrum to our clients, to me and to you. Think about it. Normalize this experience for people. No blame but our theories and approaches do blame they blame your mind. Over-medicalizing banishes hope It s my biology, there is nothing I can do about it. A delicate balance What is psychosis really? Eleanor Longden points out that we have created a psychic civil war around psychosis encouraged to see your mind as the problem reject your own experience (serves to make the experience stronger). Might voices fight that much harder to be heard? Deconstruct the message behind the words CBTp 6

7 Things to remember 13 Engagement must embody a vision of recovery and hope that communicates the program s person-centered focus, as opposed to an illness-focused approach. Language is central to this goal. Language should mirror that of the potential client and convey new meanings of treatment which emphasize recovery and hope. When speaking with potential clients or family members, avoid using diagnostic terms (e.g., schizophrenia, delusional disorder) unless specifically discussing diagnoses use the same language that potential clients or family members use when describing their experiences. e/coordinated-specialty-care-for-first-episode-psychosismanual-i-outreach-and-recruitment.shtml Things to remember 14 Language used is neither stigmatizing nor objectifying. Person first language is used to acknowledge that the disability is not as important as the person s individuality and humanity. Efforts are made to record the individual s responses verbatim rather than translating the information into professional language. Staff are mindful of the power of language and carefully avoid the subtle messages that professional language has historically conveyed to people with psychiatric disorders, addictions, and their loved ones. 7

8 15 Let s decide together Shared Decision-Making 16 Decisions that are shared by providers and clients, informed by the best evidence available and weighted according to the specific characteristics and values of the clients. Professionals are often concerned with symptoms and illness management, while young people are concerned with practical matters (e.g. not having side-effects, returning to work, feeling better, what others will think etc.) SDM is an integrative process between client and clinician that: Engages patient in decision making Provides the patient with information about alternative treatments Facilitates the incorporation of patient preferences and values into the medical plan. Acknowledges that multiple experts are in the room. 8

9 Shared Decision Making 17 Shared decision-making means that treatment decisions are made by the client and clinician together, as partners, and are based upon the client s desired goals or more importantly what they value. Each partner contributes his or her own specialized knowledge and experience to making decisions, in contrast to traditional hierarchical decisionmaking in which patients are expected to passively follow the doctor s orders. In shared decision-making, treatment staff give evidence-based information about treatment that is individualized for the specific client the client gives information about his or her values, goals, and preferences. The two collaborators then discuss and negotiate a treatment plan that both believe is reasonable(towle & Godolphin, 1999). Young people and the experience of psychosis 18 Often, when asked about goals, first episode patients define anti-psychotic medication discontinuation as a goal. Review of the available data about relapse prevention. Consider incorporating the family in the decision process. Dosage reduction, if clinically indicated. Reducing dosage and monitoring to see if symptoms remain stable is an option that appeals to many patients. Contracting to continue for a specified period of time may also be an option. Some patients may need to review their decision from visit to visit. If patients insist on medication discontinuation, developing a monitoring and contingency plan. 9

10 Shared Decision Making 19 This approach serves to empower the client and tear down internalized stigma (Corrigan, 2005). stig ma noun 1. a mark of disgrace associated with a particular circumstance, quality, or person. Combating stigma 20 Optimism about the potential to recover is powerful Health professionals who provide information need to be aware of the potential for overly deterministic interpretation of the genetic/biological information (Bennett et al, The Stigmatising Implication of Presenting Schizophrenia as a Genetic Disease, 2008 Institutionalization, socialization into the patient role, lack of rehabilitation resources, reduced economic opportunities, reduced social status, the side-effects of medication, lack of staff expectations, and the loss of hope have been found to impact on or mimic the chronicity of the disorder. (Australas Psychiatry, Factors Consumer Identify as Important to Recovery from Schizophrenia, 2003) 10

11 Motivational Enhancement goes hand in hand with Shared Decision Making Shared decision making has been shown empirically to: increase satisfaction with treatment lower decision conflict arising from being better informed better follow through on treatment recommendations improved outcomes for medical marker such as blood pressure and blood glucose Roe D, Goldblatt H, Baloush-Klienman V, et al. Why and how people decide to stop taking prescribed psychiatric medication: exploring the subjective process of choice. Psychiatric Rehab J. 2009;33: Joosten EA, DeFuentes_Merillas L, De Weert GH, et al. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence, and health status. Psychother Psychosom. 2008;77:

12 23 When people have the opportunity to carefully consider their care, they tend to have less decisional conflict. Patricia Deegan, Ph.D. Sometimes (I'm schizoaffective)/all Of The Time (I'm human) 24 12

13 Why? Because everyone deserves an equal opportunity to chase their hopes and dreams. Questions/Wrap-up 13

14 Resources/References 27 ed-specialty-care-for-first-episode-psychosis-manual-i-outreach-andrecruitment.shtml Deegan P.E., & Drake R.E. (2006). Shared decision making and medication management in the recovery process. Psychiatric Services, 57, Deegan, P. E., Rapp, C. A., Holter, M., & Riefer, M. (2008). Best practices: a program to support shared decision making in an outpatient psychiatric medication clinic. Psychiatric Services, 59, Resources/References 28 Fenton, W. S. (2003). Shared decision making: A model for the physicianpatient relationship in the 21st century? Acta Psychiatrica Scandinavica, 107, Kathleen Siacca Motivational Interviewing in Psychiatry Mental-Health-Care-Practice-Research-and-Future-Directions-318.pdf The Glass Half Empty e.pdf 14