Hope & Fear: Consumers, Hope & Fear: Consumers, Psychiatric Medications Psychiatric Medications

and the Therapeutic Relationshipand the Therapeutic Relationship

Consumers for Knowledge Consumers for Knowledge Exchange and ResearchExchange and Research (ConKER) (ConKER)

Primary author: Primary author: Ruth Gumpp, M.A.Ruth Gumpp, M.A.

BackgroundBackground CONKER was established to engage CONKER was established to engage

psychiatric consumers as partners in the psychiatric consumers as partners in the research enterprise, to investigate questions of research enterprise, to investigate questions of interest and relevance to persons receiving interest and relevance to persons receiving psychiatric services.psychiatric services.

CONKER aspires to a CONKER aspires to a participatory action participatory action researchresearch model. model.

CONKER is currently made up of three CONKER is currently made up of three consumers, two practitioners and a UBC consumers, two practitioners and a UBC professor.professor.

This projectThis project

This study explores the role psychiatric This study explores the role psychiatric medication plays in the lives of mental health medication plays in the lives of mental health consumers, and, in particular, how this experience consumers, and, in particular, how this experience of taking medication is affected by the relationship of taking medication is affected by the relationship with the prescribing physician. Rather than with the prescribing physician. Rather than concentrating exclusively on issues of concentrating exclusively on issues of adherence/non-adherence to medication regimens, adherence/non-adherence to medication regimens, as other studies have done, our goal was to unveil as other studies have done, our goal was to unveil the complex lived experiences of consumers, their the complex lived experiences of consumers, their attitudes, beliefs, and behaviour as they pertain to attitudes, beliefs, and behaviour as they pertain to medications and the therapeutic relationship.medications and the therapeutic relationship.

MethodologyMethodology Study conducted with UBC ethics approval.Study conducted with UBC ethics approval. Purposive sampling and recruitment of 15 Purposive sampling and recruitment of 15

adults who had been prescribed psychiatric adults who had been prescribed psychiatric medications for at least six months.medications for at least six months.

One-on-one semi-structured interviews.One-on-one semi-structured interviews. Following this, two focus groups to clarify and Following this, two focus groups to clarify and

elaborate preliminary findings.elaborate preliminary findings. Transcription of tapes (about 400 pages) and Transcription of tapes (about 400 pages) and

thematic analysis.thematic analysis.

LimitationsLimitations Only English-speakers.Only English-speakers. Hospitalized persons excluded.Hospitalized persons excluded. ““Demand characteristics,” i.e. study held under Demand characteristics,” i.e. study held under

VCH auspices and interviews conducted at a VCH auspices and interviews conducted at a VCMHS team.VCMHS team.

Sample more “middle-aged,” less “young Sample more “middle-aged,” less “young adult,” and the majority in treatment > 10 adult,” and the majority in treatment > 10 years.years.

Volunteer bias?Volunteer bias? Participants may have experimented with Participants may have experimented with

medication at earlier points in their lives, but medication at earlier points in their lives, but none were none were currentlycurrently non-adherent, according to non-adherent, according to their own report. (Note by contrast that 74% of their own report. (Note by contrast that 74% of subjects in the CATIE study discontinued subjects in the CATIE study discontinued medication before study completion at 18 mos.)medication before study completion at 18 mos.)

Participants appeared to be resigned, for better Participants appeared to be resigned, for better or worse, to being on psychiatric medication, or worse, to being on psychiatric medication, and no one was unequivocally anti-medication.and no one was unequivocally anti-medication.

Results: 1) ParticipantsResults: 1) Participants

Ten women, five men, ages ranging from mid-Ten women, five men, ages ranging from mid-20s to early 60s.20s to early 60s.

Eleven were either current or previous clients Eleven were either current or previous clients of VCMHS.of VCMHS.

Thirteen were presently taking psychiatric Thirteen were presently taking psychiatric medication.medication.

Diagnoses, volunteered by the participants, Diagnoses, volunteered by the participants, included schizophrenia, depression, bipolar, included schizophrenia, depression, bipolar, OCD, GAD, PTSD and borderline PD. OCD, GAD, PTSD and borderline PD.

2) Accessing care2) Accessing careDelays encountered:Delays encountered: In accessing mental health teams;In accessing mental health teams; In GP referrals to specialists;In GP referrals to specialists; In getting a diagnosis;In getting a diagnosis; Waiting for entry to outpatient programs.Waiting for entry to outpatient programs.

““I have wasted a lot of years”I have wasted a lot of years”

Respondents said that by the time they reached Respondents said that by the time they reached out for support, clinicians should be aware that out for support, clinicians should be aware that this meant they this meant they really needed helpreally needed help, right now., right now.

3) Continuity3) Continuity ContinuityContinuity among care providers was seen as among care providers was seen as

crucial, and may even compensate for other crucial, and may even compensate for other deficiencies in the relationship.deficiencies in the relationship.

Problems with Problems with continuitycontinuity: high staff turnover, : high staff turnover, telling the same story over and over, starting telling the same story over and over, starting from square one. Starting with a new caregiver from square one. Starting with a new caregiver could be seen as daunting even when the could be seen as daunting even when the relationship with the current physician was relationship with the current physician was experienced as dissatisfying.experienced as dissatisfying.

4) Transitions4) Transitions

Issue of being “cut loose” if you become “too well.”Issue of being “cut loose” if you become “too well.” Since it takes time to tell your story and build trust, a Since it takes time to tell your story and build trust, a

change of doctors – either because the physician left the change of doctors – either because the physician left the program, or by moving into a new catchment area – was program, or by moving into a new catchment area – was seen as intimidating.seen as intimidating.

Even when consumers were unhappy with the current Even when consumers were unhappy with the current physician, contemplating a change was an anxiety-physician, contemplating a change was an anxiety-producing challenge.producing challenge.

““I don’t want to do that [change doctors], no, I would have I don’t want to do that [change doctors], no, I would have to start all over again and I don’t think I’m well enough to start all over again and I don’t think I’m well enough

to do that. It’s harsh to come into a new team….”to do that. It’s harsh to come into a new team….”

5) Elements of the relationship5) Elements of the relationship Many participants were positive about their Many participants were positive about their

physician/psychiatrist. However….physician/psychiatrist. However…. Some expressed that there was an over-emphasis Some expressed that there was an over-emphasis

on medication, that other existential problems on medication, that other existential problems were being ignored. were being ignored.

Not enough counseling/psychotherapy.Not enough counseling/psychotherapy. Some found the meetings too businesslike, with “a Some found the meetings too businesslike, with “a

formula of questions.”formula of questions.”““I was looking for more comfort, maybe….whereas I was looking for more comfort, maybe….whereas

it was all business and all medication.”it was all business and all medication.”

6) Too little time?6) Too little time? Doctor sessions at the MH teams were usually of Doctor sessions at the MH teams were usually of

short duration, 15 – 30 minutes, especially if the short duration, 15 – 30 minutes, especially if the client was seen as “doing well.” client was seen as “doing well.”

Satisfaction with the visit did not necessarily Satisfaction with the visit did not necessarily depend on the length of time spent together, but on depend on the length of time spent together, but on how the client valued the how the client valued the qualityquality of the encounter of the encounter and whether and whether needsneeds were addressed. were addressed.

““If you have questions they’ll answer them….but If you have questions they’ll answer them….but they don’t really go out of their way to see how they don’t really go out of their way to see how you’re doing….trying to get at the bottom [of you’re doing….trying to get at the bottom [of

things].”things].”

7) Side-effects7) Side-effects Side-effects identified as “most frustrating” aspect of Side-effects identified as “most frustrating” aspect of

treatment, however a “necessary evil.”treatment, however a “necessary evil.”

“…“…the side effects are huge – but if I don’t take the side effects are huge – but if I don’t take [medication] – then I get into hearing voices, so you [medication] – then I get into hearing voices, so you

know what’s the best of two evils.”know what’s the best of two evils.” Seven of 15 attributed weight gain to meds, some gaining as Seven of 15 attributed weight gain to meds, some gaining as

much as 50 pounds.much as 50 pounds. ““Dulling,” “flattening” effect also reported.Dulling,” “flattening” effect also reported. When reporting unusual adverse effects consumers were not When reporting unusual adverse effects consumers were not

always believed.always believed. Ambivalence about hearing the whole list of possible side-Ambivalence about hearing the whole list of possible side-

effects.effects.

8) Stability/Stagnation8) Stability/Stagnation Reports of being “stuck,” achieving some degree of Reports of being “stuck,” achieving some degree of

relief but not really feeling relief but not really feeling wellwell.. Emphasizing “stability” had a flipside as it did not Emphasizing “stability” had a flipside as it did not

necessarily mean that the best health outcomes had necessarily mean that the best health outcomes had been attained.been attained.

Physicians staying with “tried and true” treatment.Physicians staying with “tried and true” treatment.

““They’re more interested in keeping you calm, and They’re more interested in keeping you calm, and keeping you level, and keeping you out of keeping you level, and keeping you out of

hospital….they want to stabilize you, they don’t hospital….they want to stabilize you, they don’t want to improve your situation really.”want to improve your situation really.”

9) Motivations to take medication: 9) Motivations to take medication: fear,fear,

Participants spoke about fear as a motivating Participants spoke about fear as a motivating force in staying on medication:force in staying on medication:- Fear of losing program eligibility;- Fear of losing program eligibility;- Fear of withdrawal effects;- Fear of withdrawal effects;- Fear of recurrence and relapse;- Fear of recurrence and relapse;- Fear of hospitalization and - Fear of hospitalization and “going back to “going back to that dark place,” “losing my furniture,” that dark place,” “losing my furniture,” “getting shock treatment,” “losing a lot of “getting shock treatment,” “losing a lot of your skills,” “going back to square one.”your skills,” “going back to square one.”

…….Hope…..Hope…. Of finding the “right” medication: Of finding the “right” medication: “That’s the “That’s the

key.”key.” Of being able to live without medication one Of being able to live without medication one

day.day. Of becoming “normal” again.Of becoming “normal” again. Of not being “down forever.”Of not being “down forever.”

““I’m hoping that I’m getting recovered. It I’m hoping that I’m getting recovered. It should be like before I was sick.”should be like before I was sick.”

…….and (finally) lack of options..and (finally) lack of options.

Going “cold turkey”: Going “cold turkey”: “Not nice”; “Not nice”; “Dangerous.”“Dangerous.”

““I don’t want to make a mistake.”I don’t want to make a mistake.” ““Hell if I do, hell if don’t” Hell if I do, hell if don’t” [take medications].[take medications]. ““It’s a life/death matter for me.”It’s a life/death matter for me.” ““There’s no other choice for me.”There’s no other choice for me.”

10) Non-adherence10) Non-adherenceA number of different reasons were given for A number of different reasons were given for unilaterally deciding to take less/more thanunilaterally deciding to take less/more thanprescribed:prescribed: Rejecting the diagnosis and need for treatment;Rejecting the diagnosis and need for treatment; Concern about side effectsConcern about side effects Feeling good/badFeeling good/bad Not wanting to become addictedNot wanting to become addicted ExperimentingExperimenting Seeking more controlSeeking more control““I wanted to try life without medication….I would see I wanted to try life without medication….I would see

how it would feel.”how it would feel.”

11) Equal partners?11) Equal partners? Participants spoke about feeling involved at times in Participants spoke about feeling involved at times in

the treatment process, being able to negotiate and the treatment process, being able to negotiate and discuss pros and cons of medication, “like partners.”discuss pros and cons of medication, “like partners.”

This was not consistent, however, with respondents This was not consistent, however, with respondents saying they were excluded at times. saying they were excluded at times.

““He’s up there and I’m down here.”He’s up there and I’m down here.” A potential flipside to greater involvement could be A potential flipside to greater involvement could be

that the consumer might feel that they are expected to that the consumer might feel that they are expected to take responsibility for decisions for which they which take responsibility for decisions for which they which they have not been sufficiently prepared.they have not been sufficiently prepared.““It would be easier if they decided for you, It would be easier if they decided for you, [provided that they] gave you a guarantee.”[provided that they] gave you a guarantee.”

12) Taking charge12) Taking charge The idea of confronting the physician with The idea of confronting the physician with

concerns about treatment could be overwhelming. concerns about treatment could be overwhelming.

““It’s hard when you’re not well to be your own It’s hard when you’re not well to be your own advocate.”advocate.”

The majority believed that the doctor had to take The majority believed that the doctor had to take charge in times of crisis.charge in times of crisis.

Participants spoke about a need to balance their Participants spoke about a need to balance their own interests with trust in the clinician, and being own interests with trust in the clinician, and being loyal as a patient.loyal as a patient.

13) Trust 13) Trust

““Trust is huge. Trusting someone makes you Trust is huge. Trusting someone makes you far more likely to listen to their suggestions far more likely to listen to their suggestions

and try their ideas.”and try their ideas.” Trust could take time to develop.Trust could take time to develop. There was respect for the doctor’s expertise There was respect for the doctor’s expertise

among participants, who recognized an among participants, who recognized an asymmetry of education and knowledge.asymmetry of education and knowledge.

Trust is necessary when treatment seems like Trust is necessary when treatment seems like trial and error.trial and error.

Continued….Continued….

According to participants trust was enhanced: According to participants trust was enhanced: by taking enough time and addressing all the by taking enough time and addressing all the

issues raised;issues raised; by the belief that the doctor was acting in your by the belief that the doctor was acting in your

best interest, and best interest, and by the belief that the doctor also trusted you;by the belief that the doctor also trusted you;Trust was Trust was diminisheddiminished : : by not “getting better,” too many side effects, by not “getting better,” too many side effects,

or the doctor not seeming to tell the truth.or the doctor not seeming to tell the truth.

Some final words….Some final words….

““The relationship isn’t so different than any The relationship isn’t so different than any other type of professional relationship….you other type of professional relationship….you

expect someone to be forthright and to be expect someone to be forthright and to be honest and to be sincere and to be nurturing honest and to be sincere and to be nurturing

and to be caring.”and to be caring.”

Policy SuggestionsPolicy Suggestions With continuity of care so important, consider ways to With continuity of care so important, consider ways to

minimize staff changes. For example, make the minimize staff changes. For example, make the “catchment area” rule flexible, or client-driven: if he/she “catchment area” rule flexible, or client-driven: if he/she prefers to stay at the old team, support that choice.prefers to stay at the old team, support that choice.

Re. discharge from the team, support client choice in this Re. discharge from the team, support client choice in this area. Clients appearing “stable” or “high functioning” area. Clients appearing “stable” or “high functioning” may still need the support of a team. Make the “exiting” may still need the support of a team. Make the “exiting” client-driven or at least a shared decision. Ensure follow-client-driven or at least a shared decision. Ensure follow-up is in place.up is in place.

Team eligibility not be contingent on being on Team eligibility not be contingent on being on medication.medication.