Stigma

Coaching vs Parenting Or Home Depot and Recovery

While reading an academic paper it made me smile when I came across this line:

“…coaching teams function like the Home Depot motto: “You can do it. We can help.

That is a wonderful reminder of how ACT clinicians ought to see their role in working with clients!

The line is from a paper titled The Work of Recovery on Two Assertive Community Treatment Teams by Salyers et al.  In it they explore how to best measure recovery orientation. Looking at two Indiana ACT teams and using observational measures and interviews over time, they identified “Recovery Critical Ingredients” in four areas: Environment, Team Structure, Staff Attitudes and Process of Working with Consumers (see table below or click to view online).

Recovery Critical Ingredients Table 1

In visiting the teams they found thatDespite teams’ similarities in baseline fidelity to the ACT model, we experienced many differences between the teams during our visits – both teams were meeting similar ACT model standards, but were approaching the work very differently.”

Some recovery measures are more objective, such as rating the environment looking for such features as “Open waiting area, posters about recovery, posted team mission included recovery” versus  “Separate waiting area and bathrooms, several signs with rules posted.”  More challenging to quantify are Staff Attitudes, which included looking at components of Positive view of Consumers, Positive expectations of consumers and Strengths-based Language.

They note that Concepts of risk and trust appeared central to treatment decisions and differentiated two distinct models of recovery work: coaching and parenting. Coaching teams have high trust in consumers’ ability to self-manage and view the risks as low” noting that “ The majority of consumers on coaching teams would manage their own medications and receive more intensive monitoring if repeatedly demonstrating need. This approach seems closely related to staff beliefs that consumers are “like us” in fundamental ways and should be afforded the greatest freedoms possible. As in Davidson’s view, coaching teams function like the Home Depot motto: “You can do it. We can help.”

So, should all teams be striving to become more coaching/recovery-oriented? The answer isn’t as clear as one might think.

“It may be easy to see these programs as though one team is “good” and the other ”bad,” particularly in light of recovery concepts. But both teams expressed feelings of genuine concern and care for the consumers and took pleasure in positive events in consumers’ lives. And, there were some downsides to the coaching approach. The team’s hands-off approach may foster independence quickly, but at least one consumer reported that the process was too fast — the team believed the consumer was more ready than he did. Differences in staff and consumer expectations of need are common, even in teams that are actively trying to be more consumer-directed. Another difficulty was that the team struggled with maintaining fidelity to the ACT model over time. At the time of our follow-up visit, the team was in danger of being de-certified for infrequent consumer contacts. Although the less frequent contacts could reflect staff vacancies, it is also possible that the initial coaching drifted into a mild form of neglect with the team not intervening enough, perhaps in service of the recovery ideal.” 

I’ve touched on this issue in previous blogs – in Tough Gig I expressed my view that Perhaps the most important role of the team leader is to set the underlying direction for the team.  Is our team focused on long term recovery or are we more focused on medication treatment and stabilization?”  In the blog Forcing Treatment and addressing the issue of outpatient commitment I wroteI believe forced treatment is of value. I don’t believe my conviction in any way diminishes my firm belief in recovery principles and client-centeredness. At times it’s the illness, not the individual that’s making the decision to refuse treatment. The goal of forcing treatment is to allow the individual to find their healthy, true voice”.

Consider using Salyer’s paper for a team education session to look at how your team operates.  Maybe put out questions such as

  • Are we maintaining our recovery orientation?
  • Are we too assertive?
  • Does everyone on the team have to be of the same mindset?

I think leadership has to bring a recovery-orientation to the team, not as a mandate but as a guiding principle.  Otherwise teams can fall into the trap of becoming mobile medication clinics.  Medication is unquestionably necessary – if someone is psychotic they can’t really engage in meaningful work – but medication should never be an end in itself. (see my blog Ultimat-hmms?)

As always thank you for your time.  Happy Holidays!

Shalom Coodin MD FRCPC

November 29, 2017

Coexist

 

Change The Topic

By July 2018 Canada will have legalized marijuana. Will this result in  northern reefer madness? I think not.  I do hope the discussion shifts to more pressing issues than that of marijuana.  However the next topic – that of medicalizing drugs of abuse  – is likely to be even more polarizing for the psychiatric community.

The opiate crisis needs to be addressed.  A New York Times article reports NYT OpiateDeathsthere were an estimated 59,000 drug overdose deaths in 2016 in the U.S.  Drug overdose is now the leading cause of death for Americans under 50.

At least half of ACT clients will struggle with co-occurring substance use problems at some point.  This, in combination with psychotic illnesses, poverty and the multiple other challenges ACT clients face, may make them even more at risk than the general population.  (I haven’t found any publications on how the opiate crisis is affecting ACT clients. If you  know of any please let me know.)

I blogged about this issue previously – if you have time read Relativity Risk (click to view).  Note where cannabis falls on the graphs!Drug Harm Graph

Dr. Nutt, an expert in the field wrote how:

“We saw no clear distinction between socially acceptable and illicit substances. The fact that the two most widely used legal drugs lie in the upper half of the ranking of harm is surely important information that should be taken into account in public debate on illegal drug use. Discussions based on a formal assessment of harm rather than on prejudice and assumptions might help society to engage in a more rational debate about the relative risks and harms of drugs.”

Some European countries have moved to medicalizing drugs of abuse.  In a 2014 legal journal article titled Uses and Abuses of Drug Decriminalization in Portugal (click to view pdf) the author says  that “The dire predictions of critics—“from rampant increases in drug usage among the young to the transformation of Lisbon into a haven for ‘drug tourists’ ”—did not come to pass.” She points out that “Portugal’s 2001 decriminalization law did not legalize drugs as is often loosely suggested. The law did not alter the criminal penalty prohibiting the production, distribution, and sale of drugs, nor did it permit and regulate use. Rather, Portugal decriminalized drug use…”

So what has been the effect? While still debated, the author concludes that “The removal of criminal penalties for drug use was intended to de-stigmatize addicted users and encourage treatment. According to Portuguese drug policy officials, the new system has effectively done just that.”

The fentanyl-related deaths that have hit communities such as Vancouver  – but also smaller centers, including my home of Winnipeg – have prompted the Canadian government to take steps, even ordering prescription-grade heroin.HealthCanadaHeroin

I know some will shudder at the thought of physicians ‘prescribing’  heroin.  I do!  However the issue isn’t whether we, as physicians and mental health professionals, ‘support’ drug abuse.  I think using drugs is BAD!  However the choice is not between good and bad options – it’s between bad and worse. Nearly 60,000 Americans and 2,500 Canadians died of opiates in 2016!

ACT clinicians, like other front-line staff may be equipped with naloxone kits, but naloxone is a fleeting intervention for what is almost always a long-term problem.  ACT clinicians should always be listening for opportunities to help clients work towards abstinence but the reality of the work is going to remain focused on harm-reduction.  There are not enough treatment options out there to begin with. For ACT clients who, for multiple reasons, can’t tap into or benefit from conventional treatment settings, there are even fewer.

BTW if your team doesn’t have a copy of Muesser et al’s Integrated ITDD CoverTreatment of Dual Disorders, buy one now! (click to view my previous post on this)  

I don’t  presume to have the answers but I do think we need to have discussions.

Thank you for listening.

Shalom Coodin

 

Train ’em and Pay ’em

Can mental health consumers act as teachers for mental health professionals? Should they? If so do they have the pedagogical skills to be educators?

In a 2014 paper titled Consumer involvement in the tertiary-level education of mental health professionals: A systematic review the authors look at the research on this. Interestingly the first citation is of a Judy Chamberlain paper – (see my recent post).

While it’s important to research how to best involve consumers in teaching perhaps it’s time to, as a certain footwear company recommends, just do it!

First we have to recognise the value of lived experiences. On the issue of what we call patients (yes, I am a physician and I still use this term to remind me of my role) I’m increasingly comfortable with the title of Expert By Experience (see my blog I Got A Name on this)   Consumer, client and patient all have validity.  But when a patient asks what I think they should do – whether it’s to use or not use a medication for example, or to try returning to work – usually, before me answering, I’ll point out that my patient is truly the expert. They’ve lived with depression, PTSD, anxiety, psychosis, addiction or all of the above.

It’s well past time for psychiatry residency programs to have included consumers as instructors.  I suggest a plan on how to do this.  Step 1 – Pay Them!  I don’t work pro bono, why would we ask consumers to do so? Step 2 – Train Them!  One of the fallacies in Medicine is that by virtue of going through medical school and then a residency that you automatically acquire teaching skills along the way.  That ain’t necessarily so.  I don’t really know if I’m any good as a teacher – I certainly would have valued learning more about how to be a better teacher.  Medical schools have increasingly recognized this, offering teaching faculty training in how to be better educators.Apple

Just being a mental health consumer or expert by experience doesn’t necessarily make one a good teacher. There are individuals who are better able to articulate and communicate than others.   We need to invite, entice and did I mention PAY those consumers and involve them in ongoing training, not one-off seminars.

I have no doubt that there are such individuals out there because I’ve met them.  We psychiatrists may not like all of what they have to say but that can make for more interesting conversations.

Can those with the most severe, disabling illnesses – ACT clients – be part of this? Yes, I think there are some.  And ACT clinicians, who know their clients so well, would be a great resource for identifying individuals who might take on the role of becoming educators.

It’s way past time.  As I near the end of my career I’m saddened to see so little having been achieved in my community on this.  Maybe the next generation.

Shalom Coodin MD FRCPC

Remembering Judi

A week before the tragedy of 9/11 I attended the First International Congress on Reducing Stigma and Discrimination because of Schizophrenia held in Leipzig Germany.  At that conference I met Judi Chamberlin (click to read Wikipedia entry), an outspoken advocate of patients’ judi-chamberlinrights and a fierce critic of psychiatric labeling, of forced hospitalization and compulsory treatment.  I got to spend a bit of time with Judi and enjoyed hearing her thoughts.

Judi Chamberlin died in 2010 but her book On Our Own is still available. She didn’t pull her punches. In the introduction she writes:

George Orwell would find the language of the psychiatric system an instructive example of his profound understanding of how words can be used to transform and distort. Just as Big Brother uses benign words to mask totalitarianism, so does psychiatry use words like “help” and “treatment” to disguise coercion. “Help,” in the common sense meaning of the word, must flow from an individual perception of what is needed. There are many things that can be done to a person against his or her will; helping is simply not one of them.

I do not see psychiatry as a tool of social control; I see it as the area of medicine that deals with the most complex part of the body – 100 billion neurons with 100 trillion connections.  I also think it’s worth going back to the ideas Judi Chamberlin articulated; the need for persons with mental health issues to advocate for change, the importance of protecting the rights of individuals who may find themselves disempowered, the need for those granted power – especially psychiatrists – to always be aware of how they exercise iton-our-own. I still remain an advocate for forcing medication treatment(click to view previous blogs on this) in certain situations.

Listening to critics and critiques of what we do is of indisputable value.  Without reminders as to the dangers of labeling people (please consider reading my blog on APA -Best/Worst) , of the inherent trauma in what we must do at times, such as involuntary hospitalization, we lose a valuable perspective.

Mental health clinicians should come back to these periodically.  How about ACT teams have one education session per year to look at Judi Chamberlin’s criticisms of the mental health system?

Shalom Coodin MD FRCPC

 

Seeing Everything

Nothing about me without me!

This idea of NAMWM should be a basic right for all users of health care including ACT clients.  But how to put it into practice? And how might NAMWM affect what clinicians record and  what clients get to read?

I have an interest in EMRs – electronic medical records – having been involved pts-logowith the design of the PACTwise database over many years.  I have some questions including this partial list:

  • Should EMRs incorporate ways for clients to access information?
  • Is it necessarily good for clients to see everything recorded?
  • Are there times when information should be withheld?
  • Will knowing clients are able to read what clinicians are writing change the way clinicians record information?
  • Are there differences between the clients and information recorded in an ACT program versus for example an oncology clinic?
  • Should clients have a way to record their own observations in the EMR?

Let me take these on one at a time.

Should EMRs incorporate ways for clients to access information?

Yes, yes, yes.  The courts in both Canada and the US have decided the issue – patients (clients) can request and must be provided with copies of their medical information.

Is it necessarily good for clients to see everything recorded?

Maybe not but the alternative – paternalistically protecting patients is probably worse in my opinion. In a 2010 report to the British parliament titled Equity and excellence: Liberating the NHS the authors note that “We want the principle of “shared decision-making” to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes, boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment.”

Are there times when information should be  withheld? 

Maybe.  I do think there are occasions where clinicians should be able to record things that perhaps aren’t immediately shared with a client.  This violates the principle of NAMWM and maybe feels like a bit of a shaky answer on my part.  I’m open to discussion and need to think this one through more.

Will knowing clients are able to read what clinicians are writing change the way clinicians record information? 

Yes, probably.  Is that a bad thing? Probably not.  If I knew patients were reading my notes I’d likely be more careful, not in a politically correct way but in a more “sensitive to the effect of my words” way.  I think I can adjust.

Are there differences between the clients and information recorded in an ACT program versus in an oncology clinic? 

No.  To treat mental health clients as ‘different’ is to add to the longstanding stigma around mental health and mental illness.

Should clients have a way to record their own observations in the EMR?

Yes.  To create a portal to an EMR for clients by which they can read and access information in their record while denying them a chance to input anything seems misguided, giving an implicit message of “you can look but not touch!”  Clients should have ways to add their thoughts.  The goal need not be to turn the EMR into a kind of Facebook page with ongoing dialogues.  There can be a middle ground allowing clients to flag information they want to comment on without this leading to clinicians having to revise their observations and assessments.

Kevin, Roman and I will be at the OAA Act III – Beyond the Standards OAA International ACT Conference in Niagara Falls October 26-28, 2016.  If you’re OAA Logothere have a look for the PACTwise table and stop by.  We’d be delighted to meet you and hear your thoughts about EMRs, about ACT, about making things better.

If you haven’t registered for the OAA conference just click the logo at right to get the conference brochure.

Shalom Coodin

Choosing Death

Should an individual get to choose to end their life, with a physician’s assistance, when suffering becomes too great?

Until a year ago, as The Supreme Court of Canada noted “It is a crime in Canada to assist another person in ending her own life.The Court goes on to write that ” As a result, people who are grievously and irremediably ill cannot seek a physician’s assistance in dying and may be condemned to a life of severe and intolerable suffering. A person … has two options: she can take her own life prematurely, often by violent or dangerous means, or she can suffer until she dies from natural causes. The choice is cruel.”

The Court mandated that physician assisted suicide be legalized across Canada within a year. Now provincial medical governing bodies are trying to formulate guidelines around how this should be done.Death

What about individuals with mental illness? The Court didn’t explicitly exclude mental illness.

I know a woman who developed schizophrenia in early adulthood.  She and her family went through years of torment.  She was hospitalized for years.  She hasn’t been hospitalized for more than 20 years,  lives independently, has friends and looks after her dog.  She is sweet and warm and funny.  Yet when I ask her about her lived experience of recovery she commented that she would choose death over having to go through it again.

Am I to question her assessment of her life?

And yet…  I’ve met so many individuals who have suffered so much and still have built lives of meaning and worth.  Can mental illness be ‘grievous’?  Yes, without question.  Is is ‘irremediable’? I don’t think it is.

The Death TreatmentSome countries have allowed physician assisted suicide for individuals with mental illness.  (See The Death Treatment in the June 2015 New Yorker article on this issue and how’s it been dealt with in Belgium or, even more timely – just out today (and shorter) Margret Wente Right to Die and Mentally Ill on how we need to deal with it.Wente Right to Die

What do you think?

 

Shalom Coodin

 

 

 

“I Got A Name”

Like the pine trees lining the winding road

Croce

I got a name, I got a name

Like the singing bird and the croaking toad

I got a name, I got a name

And I carry it with me like my daddy did…

Jim Croce

What should we call people?  As a physician I don’t have a problem with the term ‘patient’ but recognize its limitations.  It doesn’t really empower individuals.  With my PACT team we used the term ‘participant’ which I came to like.  There are other options including ‘client’, ‘consumer’, ‘service user’  or one I’d not come across before – ‘Expert by Experience’.

In addressing the issue for social workers C. McDonald writes:

The words we use to describe those who use our services are, at one level, metaphors that indicate how we conceive them. At another level such labels operate discursively, constructing both the relationship and attendant identities of people participating in the relationships, inducing very practical and material outcomes (McDonald, 2006, p. 115).

 I think there are merits to each of the various options – for a thoughtful consideration have a look at this article in the (click to view) British Journal of Social Work: What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next? British Journal of Social Work: What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next?

I do have a preference in terms of recording – I think clinicians should write using the patient/participant/consumer’s name.  For reasons I haven’t yet figured out many clinicians feel they must write using ‘client’ rather than the individual’s name.  I end up reading many, many notes that have the word ‘client’ many, many times.

Rogers CarlIf you’ve been reading my blog for a bit you know I love Motivational Interviewing.  MI grew out of the work of Dr. Carl Rogers, who introduced the idea of using the word client.  I support the non-judgemental acceptance Rogers advocated.  However I don’t think calling people ‘client’ rather than using their name does anything in helping operationalize Roger’s ideas.

Years ago I asked the director of medical records at the large teaching hospital where I worked whether there was some medical-legal requirement to use the term ‘client’ or some prohibition on using names.  She knew of none.  I think some believe that using ‘client’ in notes somehow is indicative of good professional boundaries.  I’m all for good professional boundaries but don’t believe using someones name in my notes in any way diminishes my commitment to maintaining such boundaries.

I like narratives.  People’s lives are stories they share with us.  When we document, why not make note of it as a story?

When you’re doing your notes this week try using the person’s name rather than the ‘c’ word.  If you’re an ACT team leader consider using an educational session to raise this with your team and allow people to express their thoughts.

And thank you, Dear Reader, for your time.

Shalom Coodin, MD FRCPC

Esso Leete

“More than by any other one thing, my life has been changed by schizophrenia. For the past 20 years I have lived with it and in spite of it—struggling to come to terms with it without giving in to it. Although I have fought a daily battle, it is only now that I have some sense of confidence that I will survive my ordeal. Taking responsibility for my life and developing coping mechanisms has been crucial to my recovery. I would like to share some of these with the reader now.”

                                                                                                                                     Esso Leete

Leete Article

How I Perceive and Manage My Illness by Esso Leete is a very personal description of coping with schizophrenia which was published in Schizophrenia Bulletin in 1989.  It remains a valuable tool for both clients and clinicians.  That doesn’t necessarily mean printing it off and giving it to clients though for some individuals that might be helpful.  For others it might work best to read it with them, asking what they think.

 In sharing how she’s dealt with the challenges Leete writes, 

Please understand that these are the kinds of obstacles that confront individuals with a psychiatric disorder every day. Yet we are perceived as weak. On the contrary, I believe we are among the most courageous. We struggle constantly with our raging fears and the brutality of our thoughts, and then we are subjected as well to the misunderstanding, distrust, and ongoing stigma we experience from the community. Believe me, there is nothing more devastating, discrediting, and disabling to an individual recovering from mental illness than stigma.

It’s worth reading the whole of this short, powerful piece and sharing it with clients; many will be able to recognize some of their own experiences and challenges in what she writes. 

Thank you Esso Leete.

Shalom Coodin

Thank you John Oliver!

If you haven’t yet watched the Last Week Tonight segment on mental health and ACT stop reading now and click below to open the clip on YouTube.

John Oliver

John Oliver presents so much so quickly and makes me laugh and cry and shake my head at the absurdity of so many situations. Anyone working in ACT knows the absurd discrepancy between the needs of persons with SPMI (and their families) and the lack of services in so many places.

It’s wonderful that John Oliver, his writers, producers and HBO did this.

Shalom Coodin

Building – Human – Services

One of the core ideas of the ACT model is getting clinicians out of buildings. Community mental health should be done in the community.

In my community an impressive building went up several years ago meant to be the centralized mental health crisis service. It cost more than 12 million dollars to build and will need millions more to maintain.

Lovely buildings are nice. I like a new office with a big window. But such structures come not only at a financial cost but can divert services away from being continuous, comprehensive and integrated (please see my previous blog  R U CCISC?).

For much of the 19th century the focus of psychiatry was on building standalone psychiatric centers, AKA asylums.  For much of the 20th century the focus was on building psychiatric units as part of general hospitals. For the 21st century hopefully there won’t be much to show architecturally.

In building human services the emphasis should be on the human and services and deemphasize the building. What we (potentially) save on bricks and mortar let’s put into the most valuable part of the equation.

If you haven’t seen David Eggers’ TED talk titled My wish: Once Upon a School, take 25 minutes and watch it.  While he’s not talking about SPMI he is addressing issues like stigma.  At one point, in talking about the Brooklyn Superhero Supply Company he comments “… same principle – one on one attention, complete devotion to the students work, a boundless sort of optimism and the possibility of creativity and ideas…”.

Eggers TED talk

ACT is an evidence-based model and should be practiced true to basic ideas.  It should also allow for creativity and innovation, if not in architecture than in facilitating recovery for individuals with life-changing illnesses.

And if David Eggers’ talk doesn’t make you smile at least twice I will gladly refund your time.

Shalom Coodin

btw thanks to those who took the time to register their opinion on the issue of hospital days and ACT.  More than 90% (of an admittedly small sample) voted that teams should look beyond just the number of hospital days.