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We Do Not Know What We Cannot Know

Who provides the best mental health care?  I’m not referring to the relative merits of psychiatrist vs. psychologist, academic center vs. private practice, or meds vs. therapy.  No, I’m referring to the actual individuals providing the treatment, and the background that they bring to the therapeutic interaction.  We like to talk about education and degrees, publications and professional designations, but to the patient, do these really count for anything?

Why do I ask?  Readers of this blog are aware that I do some part-time work in community mental health, and while I feel that I have a good rapport with most of my patients there, they couldn’t care less about where I went to school or how many publications are on my CV.  By the same token, I cannot relate with much of what they experience in their day-to-day lives.  The symptoms they report almost surely have a very different meaning to them, than the same symptoms would to me or to someone in my family.

I also work on an inpatient psychiatric unit where, again, we doctors are on a different plane than the patients we treat.  In fact, I’ve been impressed by the degree (and duration) of peer interaction, even in these acutely ill patients, and wonder whether this may be a significantly therapeutic component of their hospital stay.  I regularly see groups of two or three patients sitting together, discussing medications, family or relationship problems, legal issues, or—as I experienced just the other day—simply singing or dancing with each other.  It seems as if patients can trust their peers far more easily than their providers, who aren’t in their shoes.

And in the addiction field, “mutual support” (12-step meetings or other group therapy), in which the “therapeutic breakthroughs” come not from professional staff but from the influence of peers, provide the foundation of most of our treatment approaches.  Having had my own experiences as a patient, too, I can attest to the fact that my peers often “got” me far more effectively than those I was paying to do so.

Is this necessarily a problem?  After all, a surgeon doesn’t have to experience colon cancer to perform a bowel resection, an internist doesn’t need to be diagnosed with diabetes to understand its management, and a man can be an excellent obstetrician even though he’ll never give birth to a child.  Even in mental health, professionals can be quite astute and eminently capable, even without a history of mental illness themselves (even though we’re often accused by our colleagues as selecting this profession to cure our own problems!).

But it might be time to reevaluate this.  As a psychiatrist, I may understand the neuropharmacology of SSRIs and antipsychotics, the (supposed) biological basis of depression, and the foundations of cognitive behavior therapy more deeply than any of my patients, but in the long run, does any of this matter?  It’s bad enough that we lump together all sorts of symptoms as “major depression”; it gets infinitely more complex when we consider the vast range of circumstances that give rise to a person’s symptoms, and only the patient—or someone who shares the patient’s experience—can truly understand this.

Sometimes I feel like a fraud.  I’m expected to be objective and detached when, in fact, I’m dealing with subjective, emotional, and sometimes existential anguish that simply cannot be shared or felt by someone on my side of the couch (or desk, as it were).

How to remedy this?  For me, the best approach is not to view patients through the foggy and distorted lens of the DSM-IV, or with a narrow-minded focus on symptoms and medications, but rather to get to know them as I might wish to know a new friend.  I want to listen to their needs and desires, their intrinsic weaknesses and strengths (in a way, to not even see them as patients) and then provide whatever help or structure that they need—if I can.  Perhaps that type of engagement is not the standard of care, but patients seem to prefer it.

A very practical solution might be to rely on peer support more frequently than we do.  That is, ask patients to advise and connect with each other, rather than rely on ‘professionals’ like me.  (BTW, I’m not wishing my way out of a job; I truly believe that there will be a need for trained professionals to facilitate or oversee this process.)  We already know that the most effective non-pharmacological treatments for mental illness (e.g., the Soteria project) rely heavily on peer support.  The rise of social media has also empowered patients like never before.  Some of the most insightful (and respectful) information I have learned in this field comes from patient-oriented websites like Surviving Antidepressants, Beyond Meds, Holistic Recovery from Schizophrenia, and many others.  (In fact, I think it’s incumbent upon doctors to pay close attention to what’s written on sites like these—because these are the people who ask for our help!)

But maybe the most important thing we can do as professionals is to heed the advice shared by our patients and peers in the recovery community, which is to practice humility in our daily affairs.  We must acknowledge what we do not know.  And the most important information we do not have is what it’s like to spend a day in our patients’ shoes.  While we can share our expert knowledge with patients—and sometimes order treatments with which our patients disagree—we must ultimately respect the fact that our patients know themselves—and others like them—far greater than we do.

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18 Responses to We Do Not Know What We Cannot Know

  1. giannakali says:

    nice thoughts today Steve, I do have to say that plenty of “peers” are also professionals and can “oversee” coordination just fine…my blog is largely informed by my professional experience even if I speak in the “patients” voice.

    there is no need for us and them…really ever…

    made me think of this quote:

    “Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others.
    Compassion becomes real when we recognize our shared humanity.” ― Pema Chödrön

  2. Dr. Balt,

    Force.

    How can your profession use force when it “does not know what it does not know?”

    With all of these discussions (academic exercises), the use of force is left out of the dialogue.

    Until psychiatry stops using force, there can be no open dialogue.

    The use of this force comes to people who are extremely (temporarily) vulnerable (in a psychosis); with children (in foster care) or other less than favorable family environment; elderly experiencing dementia/alzheimers (in nursing homes).

    It seems to me that we can go on-and-on about how your profession needs to learn from ex-patients/survivors; encourage peer support; integrative methods, etc…

    But until the issue of force is addressed, it is NOT a meeting of equals… It is closer to the meeting of an abuser and one who is being abused; an oppressor and the one being oppressed… I don’t think it’s a stretch (for those who have been diagnosed as “chronically mentally ill” to say it’s analogous to a master and a slave.

    By the way, for anyone interested, Sirid Kellermann, Ph.D. from NeuroScience responded in one of your previous posts –

    https://thoughtbroadcast.com/2011/11/29/were-doctors-we-prescribe-drugs-thats-what-we-do/#comments

    Duane

    • Rob Lindeman says:

      I’m with Duane on this one. But I would add that psychiatrists are not the only “mental-health providers” deputized by the State to use coercive force. No one should coerce anyone who has not deprived someone else of his inalienable rights, or broken the laws of rightful authorities.

    • Lizzy says:

      duane– i was forcibly admitted to the psych unit after telling my psychiatrist i was feeling more suicidal but had NO INTENT. while i was there, i was restrained for self harm (five points for most of the time) for 44 hours. FORTY-FOUR HOURS! http://steppingawayfromborderline.blogspot.com/2011/10/blast-from-past-november-2009.html. this was one of the most traumatic experiences i have ever had. i still get panicky in the back of a two door car or trying to wear my seat belt. keep speaking your truth, man.

      • Carol Levy says:

        I made a suicide attempt at age 17. I was ‘involuntarily admitted’ to a private psych hospital. I was assigned to a psychiatrist with whom I could not talk: Our sessions consisted of silence for 23 minutes then she would say “What are you thinking” I reply “Nothing.” She responds “Nature abhors a vacuum.” and then we sat silent for the next 22 minutes. When I turned 18, 2 weeks later. I told the psychiatrist I was signing myself out. She told me if I did that she would tell my parents I was not ready to go to college (which I was to start about a month later.) Her blackmail worked. I did not self discharge. 3 days later she discharged me, wanting only to prove superiority and control. Unfortunately my short stint with psychiatry was abysmal. I do not think that all psychiatry (*&%#* is a legit stance but enough of us have these stories that one does need to take a hard look at what passes for medical care.

  3. Lizzy says:

    i have extensive experience both as a “helper” and as a “client”. i worked in residential treatment while i was in college. for four years, i worked as a school social worker. i have been a patient in a psychiatric unit on ten to fifteen occasions throughout my life.
    i’m “blessed” with a unique perspective…

    i see the need for and have GREATLY benefited from the care of professionals. however, no peer has ever asked me, “what do you want me to do, tie your hands behind your back?” like the doctor at a nearby psych hospital once asked when, as a teenager (18) i went there seeking help because i was feeling suicidal. no peer has ever told me to “grow up and find some new coping skills. the hospital has REAL sick people to deal with.” (like a psychiatric unit psychiatrist once did). no patient has ever called me a “fascinating liability” like another helper did, before letting me know they could not help me.

    all helpers are people, just like all patients… it seems to me the helpers SOMETIMES have more knowledge, and the patients SOMETIMES have greater understanding and empathy… i LOVE it when i find a helper with high knowledge and empathy. and i attempt to “maintain high levels” of both myself.

    to me, dialectical behavioral therapy has been the best of both worlds– a small group of empathic peers, learning skills together with the assistance of a licensed psychologist and an ph.d. student pursuing a clinical psych degree.

  4. Carol Levy says:

    “After all, a surgeon doesn’t have to experience colon cancer to perform a bowel resection, an internist doesn’t need to be diagnosed with diabetes to understand its management, and a man can be an excellent obstetrician even though he’ll never give birth to a child. ”
    No but as a chronic pain patient and advocate, I consistently hear, patients say’ if doctors could experience this pain we feel they would be able to have empathy and understanding and what a change that would be in the type of care we receive.’
    I think your post goes back to another earlier one where a lot of folks responded about the use of non psych to do therapy.
    Peer support is no substitute for medical but medical is no substitute for peer.
    My peer tells me about their pain and how they deal with it, a doc cannot do that. My peer tells me how depressed they feel and I reply with when I felt that way and what helped me, or did not help. There is no substitute for a doc but there is also no substitute for someone else sharing real life, real time experience.

  5. catsrgreat says:

    There is stuff that has happened to me that I cannot safely tell a peer, because I cannot absolutely count on them to keep their mouth shut about it. Also, professionals are less likely to say or do the WRONG thing in a crisis, although it has happened to me. Nowhere near as bad as what happened to Lizzy, though.

    • stevebMD says:

      Excellent point. We must not vilify mental health professionals, and we must also recognize they (we!) are specially trained in management of crisis situations.

      Beyond the acute episode, however, are they (we) just spinning wheels?

  6. Altostrata says:

    Dr. Balt, thank you for your kind mention.

    May I point out that http://SurvivingAntidepressants.org is a peer support site, and I’d like to think a good one, but it has a specific purpose: To support people tapering off antidepressants and those who have withdrawal syndrome.

    There are dozens of such sites on the Web. They fill a vacuum because doctors truly do not know what they do not know about safely tapering patients off psychiatric drugs and the risk of severe, persistent withdrawal syndrome if tapering is botched.

    If doctors in general emerged from anosognosia and acquired the knowledge of what they do not know — i.e. gradual tapering and withdrawal symptoms — I would be happy to refer people to them and close up the site.

    (We have an excellent selection of journal articles at http://tinyurl.com/3z6e2sx and other discussions of tapering on the site.)

    In the meantime, I would like to hear from those rare MDs (God bless you) who have experience in slowly tapering people off psychiatric drugs over months rather than weeks for inclusion in our roster of knowledgeable doctors, or who would like to discuss tapering techniques with other doctors. Please e-mail me at survivingads at comcast dot net. You will be saving lives.

    • stevebMD says:

      Not to toot my own horn, but I learned today that in my Medi-Cal clinic (20%-time) they will refer any patient wishing to discontinue medications to me.

      Altostrata, I included the link to your site not only because you and your readers provide clinical information that is sorely lacking in the professional literature, but also because your readers post genuine, first-hand reports of their experiences on (and off) psychiatric medications, in levels of detail that most psychiatrists never allow themselves to hear. It is as valuable a resource as anything Steve Stahl, the APPI, or the pharmaceutical companies can send our way, so thanks.

      • Altostrata says:

        Woo-hoo! Congratulations on your new subspecialty.

        I agree, Dr. Balt — the stories people tell of their many misadventures with medications and misdiagnoses and their conversations with doctors would be of great interest to clinicians.

        If anyone would like to read these patient-authored case histories, they are conveniently located in the Introductions section at http://tinyurl.com/3o4k3j5

  7. giannakali says:

    As long as patient authored misadventures are being shared I will post a link to a post on my blog on people’s problems with lamictal (lamotrigine) as there is no board or withdrawal group so specific to lamictal issues in withdrawal.

    I finally closed down comments on the post at over 300 comments.

    Even if most MDs have heard of issues in withdrawal with benzos and antidepressants, which are more broadly known (even if they’ve not recognized it in their practice), the issues with lamictal and other drugs are much less familiar in the literature. The fact is all psychotropics can create odd and scary stuff upon discontinuation.

    This post is still the MOST trafficked post on my blog several years after it’s first posting…people are looking for this info.

    Lamictal withdrawal from hell

    http://beyondmeds.com/2007/12/20/lamictal-withdrawal-from-hell/

    And I’ve asked, too, that doctors please learn to help us, as Alto too above notes…we need it.

    A plea to prescribing physicians and psychiatrists: please help us heal
    http://beyondmeds.com/2011/12/04/helpheal/

  8. Carol Levy says:

    I wonder if this is something not taught to any specialty.
    I was put on methadone for my chronic pain when in the hospital in Pa. The doc told me he would refer me to a doc in my home state who would write for the med. He refused. (The latter a neurologist, the former a pain management specialist.)
    Since they were not helping I decided to stop taking it. Within a few hours of the last dose, expecting no problem since I was given no warning, I was having the kinds of symptoms they describe when you read about someone coming off heroin: achy, nose running, crampy, etc. I decided to start taking half the prescribed dose and then continuing to half until no more symptoms (which I was able to do) which took about a week.
    There was no reason for him not to advise me of potential addiction other then he did not know (or think it was worth mentioning.)

    Steve, congrats. you prove constantly you are on the side of the angels.

  9. mara says:

    Thank you for this post. Long ago, when I was inpatient, it was very healing for me to hear the stories of others in suffering…unfortunately, the staff did not understand this. I actually felt uncomfortable in group therapy (nor sure why). But I found it comforting when in casual conversation with other patients. However, this was discouraged and the other patients and I were told that we needed to be focusing on ourselves and not swapping stories. Later on, I read that kids in drug rehab will brag about their misadventures and encourage the other kids to be bad or give them ideas. And rehab actually makes their drug addictions worse. I was not in rehab and have no clue if their reasoning is because they were afraid of spreading bad behavior or not. But, I know that the time I did have talking to patients eased my own pain.

    Maybe I just wasn’t a group therapy gal? I’m probably still not. I think I would probably still feel uncomfortable in a formalized group setting. My family and I did horribly at family therapy. It was my sibling and father, and it was a disaster. My brother and I were totally tongue tied, and the therapist accused my brother of being rude. I think he was just shy though.

    Maybe some people just aren’t meant for family or group therapy?

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