pals and poisons…

Posted on Tuesday 3 June 2014

As a child, I frequently visited my grandparents in a small Georgia town. They lived in an old Victorian house that was filled with wonderful cousins and "show people" – friends from their earlier days as wandering Vaudevillians who passed through town. It was a magical place etched forever in my mind. One of my favorite things was visiting the old couple in the cottage next door. The husband had Diabetes in a time when that was difficult to manage, so he was rarely seen. But the wife, an elderly lady with multiple deformities from Rheumatoid Arthritis was always on the porch, glad to see me, giving out various treats and telling magical stories of her own. She called me her "pal." She had been a traveling Vaudevillian herself until she was stricken with a storm of arthritis that left her barely able to get to her front porch, much less sing and dance. So her stories were of her pre-RA adventures going from town to town and doing shows on the Mississippi River boats – the vacation cruise liners of the day. She loved telling those stories and I loved hearing them. In medical training, it never occurred to me that my choice of specialties, Immunology and Rheumatology, had anything to do with my childhood "pal," but there’s little question in my mind now that she was perhaps the deciding factor [in that place that runs in the background of things].

Rheumatoid Arthritis comes in many flavors, but a "storm" is one of them. By the time it passes, the joints are badly damaged leaving the deformities in their wake for the duration, even though the active inflammatory process has passed. By the time I came along, we were loaded with treatments beyond the traditional supportive care. We had anti-inflammatories, antimalarials, gold injections, and, of course, corticosteroids. The immunosuppressives were experimental, but definitely on the way. None of the drugs treated RA, whatever it is. They treated the consequences, but doctors and patients were glad to have them nonetheless. And, by the way, they’re all poisons with predictable side effect profiles and potential dire consequences with extended [and sometimes short-term] use. I never saw an acute case that turned out like my "pal." We could abort that outcome. But I saw those older patients in the clinic who were still plagued by the indelible deformities from the days before we had the poisons. And I saw another group of older patients in that same clinic, still plagued by the consequences of the too liberal or extended use of corticosteroids during their earlier days as "wonder" drugs.
    In case you’re wondering where I’m headed with these reflections, it’s my response to a lively and interesting discussion in the comments to my post fire in the belly…. But I’m not quite ready just yet to connect the dots…
Also in Rheumatology, we had biomarkers – tests that were part of making the diagnosis. We had RA tests, LE preps [Systemic Lupus Erythematosis], ANA tests [anti-nuclear antibodies], and a bunch of others with less specificity. But those biomarkers had nothing to do with some ultimate cause, or if they did, we didn’t know it. They were like the treatments, tests of the consequences, the inflammatory responses – though we chased them to the ends of the earth looking for a cause. When last I checked, these were diseases of unknown origin and the biomarkers were for chronic inflammation of various kinds – not the diseases.
    Now I’m nearly ready…
When I got to psychiatry as a late-comer, the analogies with psychotic illness weren’t lost on me – diseases of unknown origins that could profoundly alter the course of a life, treatable with poisons with predictable side effect profiles and potential dire consequences with extended [and sometimes short-term] use. There was another analogy in that psychotic illnesses either clear [Affective Disorders] or improve [Schizophrenia] with time. I was used to treating one bad disease [RA, Schizophrenia] by causing another [Cushing's Disease, Neurolepticization], and I had no illusion that there was anything slightly easy about walking that tightrope [living with that double-bind]. I was uneasy about the way my fellow residents used medications so liberally. They thought my reserve was "quaint" – maybe "old fashioned."
I had been writing about the Dr, George Brooks’ Vermont study in the 1950s when Thorazine was first introduced. Around 40% of his "back ward" patients responded. He developed an intensive intervention, something of a therapeutic community and was able to move most of those that remained into the community. Courtenay Harding published a [very] long term follow-up [mean = 32 years] in which they rediagnosed the cases using modern [DSM-III] criteria, and compared them to a contemporary cohort in Maine who had not been through a rehab program. By any dimension, the Vermont study demonstrated an impressive outcome – certainly nothing like the grim predictions of the past, and showed the importance of going beyond simply using antipsychotic medication. By my read, the medication was an essential ingredient, "but only an ingredient, not the ingredient." I personally really enjoyed reading the study [in part because it mirrored my own thoughts].

In the comments, the discussion turned to the writing of Joanna Moncrieff [eg How do psychiatric drugs work?][see also not with a Hamilton Rating Scale…]. She contrasts a disease centered model [the medication treats the disease itself] and a drug centered model [the medication creates an altered state, and the therapeutic effects are secondary to the altered state]. In the comments, there was an argument about the utility of her point. I avoid taking sides when people I respect argue with each other and try to just listen to learn, seeing argument and debate as our greatest legacy from the scholars of old. But I thought I’d add in my own thoughts about Dr. Moncrieff’s point.

When I first read Dr. Moncrieff’s writings, I didn’t get it. I already thought what she said. I had never had a single moment in my life thinking antipsychotics were disease-specific. For that matter, I only thought antidepressants were disease-specific for a short time after a particularly eloquent lecture in my Internist years of yore [I got over it quickly]. And one would have to be blind not to notice that both groups of drugs could and did create altered states. I had a similar reaction on reading Robert Whitaker’s books when he talked about the dangers of medications and particularly their their continual use. I agreed with him, but I always had. I knew that many recommended keeping people on antipsychotics all the time to prevent relapses, but I also knew that patients often didn’t like taking them and stopped. I had seen enough obtunded states and Tardive Dyskinesia to know that I wanted no part of causing either. And I’m also old enough to have seen the patients like those rescued by Dr. Brooks, crippled by years of unmodifed psychotic illness – crippled in a different way from my childhood "pal," but crippled nevertheless.

And I’ve heard activists talk about psychiatrists drugging patients for my whole career – like it’s something we want to do or don’t understand the consequences of or enjoy. And I listened to Dr. Szasz’s point about the myth of mental illness – even read some of his books. And I’ve heard the recommendations and read the guidelines for "staying on meds" ad infinitum. And when I was a chief resident and later a training director, the residents and medical students quickly learned not to present a case to me with "stopped taking her meds" as an explanation for a relapse, knowing they were in for one of my diatribes that started with, "I wonder why she stopped taking her meds? Let’s go ask her," as I marched them en masse to the ward to see the patient.

I understand why people who work in some places, particularly mental health centers or academic jobs, gravitate towards the "stay on meds" end of the spectrum. Patients going off meds do frequently relapse. It’s not very good for them [and it's exhausting]. And I understand why people who see the long term consequences of these medications come to oppose their existence. I decided that I had to make my own peace with all of those things and I had trouble getting there when I thought about "all patients." I am by training and preference an n=1 doctor and what usually happens when I try to think about "all" anythings is that I end up with a headache. I also see physicians as advisers and so the involuntary stuff isn’t my cup of tea. I’m actually pretty good at it, but I just don’t like it [which is probably why I was good at it]. So public mental health wasn’t going to be my choice, even though by temperment and history, I’m afflicted with a "do gooder" gene.

What I decided was that my job was to learn everything I could learn about these medicines and the illnesses they were used to treat, and then deal with one patient at a time – the ones that saw me as their doctor and I saw as my patients. That’s the way I learned to be a doctor and it was, in my opinion, the right way to do things. I followed a reasonable number of patients with psychotic illnesses over the years. I always aimed for them to be medication free, but only occasionally achieved that goal. We had to settle for either intermittently medication free, or medications minimal. I learned that if I was more liberal with antianxiety drugs than usual, I could minimize the antipsychotics more easily because the patients tended to use them for their anxiety. To be honest, the Rheumatologists who had taught me to carefully manage their even more toxic medications were more helpful than the psychiatrists or their guidelines in my own work.

I personally believe that these patients are really helped by long contact with professionals and others who know their illnesses, vulnerabilities, and pitfalls. I believe judicious use of neuroleptics is an important, and sometimes essential, part of the picture. And I agree that the best way to work is collaboratively as an adviser rather than as an authority figure. As for Dr. Moncrieff, I came to see why she says what she says by listening to the KOLs and reading their guidelines. They need to hear it. But I see that point everywhere in interventional Medicine. As an old man, I guess I see most "meds" as poisons or potential poisons. The skill is maximizing the useful effects, minimizing the noxious effects, and living with the constant terror of doing long term harm always sitting on your shoulder. I now think that’s what Joanna Moncrieff is saying and if I’m right, I agree with her. I wish she’d aim it a bit more towards the people who most need to hear it, and not at those of us who have always known it.

I still wish my childhood "pal" had been born in my time – a time of the latter-day poisons that might’ve allowed her more of the life she wanted to live…
  1.  
    June 3, 2014 | 8:07 PM
     

    Thank you for such an interesting series.
    Funny story – a few years ago, I developed an inflammatory arthritis. I was struck by the similarities between rheumatology and psychiatry. They have their bio makers but as you well know those are not all that precise. My numbers fell in the hinterland (which I gather is not that uncommon), and they offered me, sequentially, the drugs they offer to pretty much everyone. I was lucky to go into remission before I got to the really scary stuff.
    But this is where is gets interesting. It was recommended that I stay on the drug (methotrexate) forever. Although I had been in significant discomfort for a few months, there was no permanent joint damage and through it all I never even missed a day of work. While the choice of remaining on the drug forever might have appealed to some, it sure did not appeal to me; I was willing to risk relapse. I asked the doctor on what basis she recommended that I not even try a slow taper with the plan to re-start the drug if symptoms recurred. She began with data (weak since I did not even have a clear diagnosis) on risk of relapse, then seamlessly went into anecdote (one time, a patient stopped and it took her a very long time to go back into remission). She did not realize what she was doing. She did not strike me as the type who would have enjoyed a discussion of clinical decision making, so I thanked her, went home, and tapered off. Three years ago. No symptoms.
    I am not saying mine was the right decision but it was my decision.
    Doctors like to do (and prescribe) stuff.

  2.  
    June 3, 2014 | 8:45 PM
     

    Sandra,

    It’ll be there if you need it. Back in my day, Methotrexate was a poison sure enough, used to treat leukemia, cancer. Then in the 80s, it became an immunosuppressive and a staple in treating the inflammatory arthropathies. They use it safely and extensively with good results. But you’re right, keeping the evil diseases away with maintenance poisons is a doctor thingwell meant but not always heaven sent. I’ll bet there’s a guideline somewhere that says that in who-knows-what-it-is arthritis that responded to MTX, maintenance MTX is recommended just like antipsychotics are in former who-knows-what-it-was psychosis.

    In the best of all possible worlds, I don’t mind her anecdote, but then I want her to say, “… but that’s just an anecdote, not something we know for sure. And if you decide to stop it, that’s your call. I’d like you to call me at the first sign of joint discomfort so we can take a look, get a few tests, and be sure there’s no lag in treatment if you need it again.” You’d do that anyway, but not all patients would and it’s a good idea to say that out loud so the patient won’t delay showing up to avoid being chided. That happens all the time.

    I spared readers in this post. The similarities and differences between my old Rheumatology and my newer Psychiatry would fill pages and pages…

  3.  
    June 3, 2014 | 8:48 PM
     

    I hope we all know by now about the haziness of risk of relapse after going off neuroactive drugs.

    Joanna Moncrieff is the author of the most intelligent statement about drug policy I have ever read. Perhaps this will illuminate what she means by “drug-centered.”

    ‘Angels and demons’: the politics of psychoactive drugs
    http://joannamoncrieff.com/2014/04/22/angels-and-demons-the-politics-of-psychoactive-drugs/

    “….We are now paying people to take drugs they don’t like and don’t want, while we continue to invest vast sums of public money in efforts to curb the use of drugs that people do like and do want. Prescription drugs like antidepressants, antipsychotics and so-called ‘mood stabilisers’ are widely promoted as good for your health. But the history of prescription and recreational drug use is more intimately intertwined than most people recognise. Attempts to disentangle the two have created a false dichotomy – with prescription drugs, at least some of them, set up as the ‘angels’ that can do no wrong, and recreational drugs cast as the ‘demons’ (3).

    Distinguishing drugs in this way makes no sense pharmacologically, and does not help us to understand what effects they actually have. ….

    …. So today we have the bizarre situation in which use of mind-altering substances is simultaneously prohibited and promoted. Taking heroin to numb the pain of life is demonised, but taking an ‘antidepressant’ or ‘mood stabiliser’ to combat your depressive tendencies or manage your mood swings is encouraged, and not just by the pharmaceutical industry, but by professional and governmental anti-stigma campaigns (18). ….

    …. To take drugs for your own purposes, on your own initiative, is condemned, but taking them for a ‘medical’ reason, under medical supervision, is applauded. The pharmaceutical industry knows that what constitutes a medical indication for psychoactive drug use, however, is infinitely malleable, and that this malleability can be used to capitalise on the ancient human desire to alter one’s mental state. Large swathes of the population can be persuaded to view themselves as needing drug treatment for anxiety, depression, bipolar or whatever is the flavour of the decade. Just as governments of the mid 20th century tolerated the widespread use of barbiturates and amphetamines, governments of the 21st century have shown no concern about the rapidly rising use of antidepressants, antipsychotics and medically prescribed stimulants. ….

    …. We need to be more honest and open about the nature of prescription drugs, in order to develop more rational policies towards drug use in general. At present we are stoking the desire for mind-altering effects with medically authorised substances, some of which may be just as harmful or worse than their illicit counterparts. We may also be missing opportunities to explore the therapeutic effects of some illicit substances….”

  4.  
    June 3, 2014 | 9:45 PM
     

    Alto,

    Fine by me. I really do shy away from the big picture thoughts because I feel like I don’t have anything but opinions. I completely agree with the idea that too many stimulants are prescribed and too many people diagnosed with ADD. But when I see the n=1′s that come to see me, I have to decide based on the case in front of me.

    One big picture thought was about Atypicals. When I started volunteering, everyone was on them – mostly Seroquel®. I think that’s a really bad idea. But it has taken me 5-6 years to have a practice where the only people on antipsychotics are people with “psychoses.” There’s a place where groupthink affected my n=1 practice.

    Another is long term use of antidepressants. Depression is a self limited condition and I know of nothing that suggests long term antidepressant use is a good idea. But I’ve had less success getting people AD-free. One problem is what I think of as “Alto-disease” – confusing withdrawal with returning depression. That has helped with a lot, but by no means all. It’s a work in progress. One thing I’ve noticed, if it’s a patient I personally started on ADs, they’re a lot easier to get off because I always say it up front that this is a time limited treatment and I always taper.

    An aside: I actually agree with Joanna that the drug culture and the medical culture of drugs are intertwined and confusing. I hope she gets it sorted out, but that’s too big for this old man. In my neck of the woods and in the socioeconomic class I see, we’re finally making a dent in the indigenous “taste for meth” that haunts these Appalachian mountains, heir to the moonshine that afflicted former generations. I can guarantee you that methamphetamine won’t be in our future pharmacopoeia. When they say “meth is death,” they’re not just whistling dixie…

  5.  
    Arby
    June 3, 2014 | 9:47 PM
     

    Dr. Steingard, your story reminded me of one of the rules I live by.

    Between the ages of four and nineteen with the exception of the scoliosis screening in grade school, I never saw a doctor. Luckily, I was pretty healthy. But when I was not, it was mom or by the time I was a teenager, take care of yourself. This allowed me to be comfortable in making my own decisions, and to come to terms with the possibilty of being wrong.

    What I got out of it is this. I figure if I am willing to bear any mistakes my doctor may make, I should be willing to bear my own, because I’m the one it falls on either way. So, I give myself a break for whatever. And, I give my doctors a break too, because every bit of care they have provided has been with my approval. I’ve always done my homework to the best of my ability and even when I didn’t understand something (most cases), I’ve always maintained the right, and responsibility, that it was my decision.

    I realize life is different in the psychiatry world for a patient. I am not sure I would ever take to that loss of control; fairly positive I wouldn’t.

  6.  
    June 3, 2014 | 11:26 PM
     

    Arby,

    As I mentioned above, I’m not drawn to the involuntary business personally though I understand how things came to be like they are, and when it was part of my job, I did what I needed to do as best I knew how. Towards the latter end of those days, I took to talking to the patients about that later – the ones that could and would [most of them]. Those were some fascinating discussions. I tried to avoid trying to get them to say it was a good idea [just to make me feel better], but instead to talk about what we each recalled about that event. Some actually said it was a good idea, but mostly we ended up talking about their intense fears. I found myself often saying “I was afraid of you too.” I don’t know if those talks made any difference, but they didn’t hurt anything, and they were sure interesting. I think one of the things that got me started doing that was the same sentiment you have, thinking about what it would be like from the other side. Who would possibly want to be in that situation?

  7.  
    Bernard Carroll
    June 4, 2014 | 12:49 AM
     

    This is a good perspective, Dr. Mickey. I think there are several reasons for the noise about “drugging” psychiatric patients. First, the KOLs in cahoots with PhRMA made it easy for critics to impugn serious clinical scientists and uncompromised practitioners with the KOL stink. You make a telling point when you say Moncrieff and Szasz and Whitaker have been preaching to the choir of sensible clinicians. Their ideological posturing was not needed for us. I believe that this fallout is the most damaging legacy of the egregious KOLs who were outed by Senator Grassley and Paul Thacker.

    A second contributing cause also was KOL-driven – the acceptance of the evidence based medicine model and the consequent deferral to algorithm-driven treatment guidelines. I agree with you that one cannot practice good medicine in this way – it’s like painting by numbers. The algorithms are supposed to be reminders, not edicts. It’s the mindset that eventually produces the RAISE manual. It is a mindset that managed care understands. It’s the mindset that spawned the Steven Hyman-Thomas Insel STAR*D fiasco, and Trivedi’s measurement-based care, and Kupfer’s quickie scales corporation.

    Once that mindset gained currency, patients and critics alike came to expect predictability if not perfection in the practice of medicine. You correctly point out that medical practice is not about recipes or certainties – it is a pragmatic, often ad hoc, trial-and-error business, heavily contextual and flexible, and constantly changing. If we are lucky, the patient is our partner in the treatment approach, and we give the patient good information for that purpose. If we are not lucky, we do our best to act under the principle of parens patriae in the patient’s best interest. And when we do, it is galling that a shrill know-nothing like Moncrieff presumes to second-guess our treatment decisions. What alternative therapeutic advances can we thank her for? A colleague who met with her not long ago describes her as a fanatic who will not give medication even to a patient with acute delusional depression. That’s what I call ideologically inspired therapeutic sadism – she will feel better if she denies effective drug treatment even though the patient will suffer more. Tell that to Dr. Raymond Osheroff, who languished for 7 months in Chestnut Lodge Hospital, deteriorating by the week with the kind of obstinately misguided treatment that Moncrieff would approve. And Moncrieff’s posture is even more deplorable when it is dressed up in the pseudo-science and false logic of her drug-centered approach.

  8.  
    Steve Lucas
    June 4, 2014 | 8:25 AM
     

    Reading this post and comments took me back to my youth and reflects on my current medical situation. My father was the one who insisted we receive proper medical care when injured as children while my mother would always say we would heal.

    I do not even argue with doctors any more for the logical fallacies and straw man arguments given when they prescribe medications prior to testing or even an exam. This is all about filling slots with healthy people who will not have adverse reactions to low dose medications and up coding.

    Today, like then, I see the people harmed by over medication, or lack of medication, and their physical and mental scares.

    This is all like sitting down with a group of old friends and sharing our similar stories

    There was a study done some time ago about health care for those who are truly poor and they do rather well, not that this is an excuse to ignore the problem. Think of the skill Mickey and his friends bring to their practice and how lucky any of us would be to have him as a doctor. Funny what happens when the focus is only on the patient? Time and patience is used to heal physical and mental issues and medications are kept to a minimum.

    Steve Lucas

  9.  
    June 4, 2014 | 6:33 PM
     

    “Alto-disease”!!! I guess I’m honored???

    From my perspective, we all need to keep in mind that in the larger world, “psychiatric patients” are not only those hard-core cases that ground psychiatry as a medical discipline and for whom the risk-benefit ratio may favor a trial of medication.

    Rather, the vast majority of chronic “psychiatric patients” do not have a psychiatric disorder — as witness CDC statistics about US antidepressant use from 2008 http://www.cdc.gov/nchs/data/databriefs/db76.htm. According to my calculations subtracting the estimated MDD population, more than 80% of those taking antidepressants in this statistical set do not have conditions of such severity that the risk of the drugs is justified.

    That 80% amounted to 24 million people in 2008. Surely the number is higher now.

    In addition to adding to the ever-increasing prescription of the drugs over time, one must add to that 24 million the number of people taking benzodiazepines (part of our addiction epidemic), those taking atypical antipsychotics for no good reason, and, not least, the amphetamine analogs.

    And that’s only multiple 10s of millions in the US. Europe is right behind.

    To Dr. Mickey’s point that medications are poisons that should be used judiciously, balancing risk and benefit: The number of injuries from psychiatric drugs even at a normal rate (assuming adverse effects are recognized, which they are not) among, conservatively, about 60 million unjustified “psychiatric patients” worldwide is a public health issue — which is my takeaway from Whitaker.

    Those injured have been saddled with risks and no benefits.

    So far, only the technically addictive psychiatric drugs have gotten any attention as a public health issue, as those who’ve become dependent on benzos and the amphetamine analogs are flagellated as sinners needing rehabilitation. No one pays any attention to adverse effects among the rest of the 60 million.

    My guess is this is why critics of psychiatric drugging seem to go overboard. They’re thinking of the n=60 million rather than n=1. They’re trying to make a lot of noise to stop physicians overprescribing psychiatric drugs by the enormous margin of 80%.

    80%!!! Tens of millions of people!!! The enormity of this is staggering and to overcome the anechoic effect, critics exaggerate to make a point. I guess you could say it doesn’t help the cause, but what does?

  10.  
    Arby
    June 4, 2014 | 10:15 PM
     

    Dr. Nardo,

    “I don’t know if those talks made any difference…”

    You may be surprised. I can’t speak for other patients including the ones you spoke with in your latter days, but I know there are some out there that think like me. And to me, an honest conversation with a physician in the proper time reminds of that rarely used phrase “All that is gold does not glitter.” This conversation is something that cannot be marketed, coded, measured, dictated, mandated, scripted, bullet pointed in a manual or bought or sold. It is just what it is, and it is gold.

  11.  
    Arby
    June 4, 2014 | 10:57 PM
     

    Steve,

    Not that you took my history this way, but I wanted to state that I didn’t share it in order to tell a story, for pity or to show how resilient I am. In this case, I shared my history to show how my perspective came about. Since I often find myself holding a minority view, I’ve found it helps others to understand me if they can see how I formed my opinion, even if they don’t agree with it.

    About the poor and medical care. I can see where they, as a whole, generally fare pretty well without it especially while they are young. I am a prime example. And, I also know that the poor can be very creative in getting along. But, when you are older it is harder, and for all ages, the fact remains that being poor makes you incredibly vulnerable to any adverse event, even a minor one.

  12.  
    Steve Lucas
    June 5, 2014 | 7:31 AM
     

    Arby,

    My only point was that the young, of every economic stratus, often are not given proper medical care. This is changing with many of the new programs, but for some of us medical care was limited. This has impacted my view of medicine.

    There is some interesting information coming out about the poor. The new poor do not do very well as they do not know all of the tricks those who have lived in poverty know to survive. The food bank schedule comes to mind, free clothing, rent and utility assistance and the list goes on.

    Medically the worse group is those with Medicaid. Limited choices, income restriction, mounds of paperwork all combine to create a system that makes medical care almost impossible. Free clinics and caring doctors who slip people in often give better care than the practice that limits access.

    Medicaid is of importance to the elderly as they age, as this qualifies them for other programs and can be a major plus in accessing nursing care. There is a gap in those middle years.

    What I see, and the comments reflect, is that polypharmacy is epidemic in this country. Regular reports have many people taking over 30 medications per day and even the most cynical cannot disregard the potential for drug interactions. This can also be used by the patient to reinforce their situation as they are “sick.”

    We waste money on needless drugs, while promoting a business model that limits contact, but promotes testing and repeated office visits. Patients need to connect to their doctors, not simply be a sheet to be scanned prior to a three minute meeting and then given even more medication.

    Steve Lucas

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