We have a Dream: Getting engaged to a doctor

Still, you take the medication as prescribed. At first
you imagine your body may adjust or the pills
will come to understand you. It is no use.

From Virginia Chase Sutton: Lithium and the Absence of Desire.

Patient engagement

Patient engagement is one of the mantras of current healthcare improvement efforts. Medical students and junior doctors likely think they are doing it better than their elders ever did. They are after all taught communication skills, where an earlier generation wasn’t. In fact, they are taught that they are being taught communication skills. They are taught how to communicate bad news. They are not taught how to hear awkward or bad news.

The younger generation are almost certainly worse than former generations of doctors at listening for or actually hearing “the treatment you put me on doctor has made me worse”.

Patients & doctors are caught in Stockholm Syndrome

There are two ways in which doctors have a problem when it comes to adverse events. One is that it is now clear that ever better communications skills, in the sense of friendliness and superficial approachability, will increase the likelihood of trapping patients in a Stockholm syndrome so that they are unable to report adverse events to their doctor.

Doctors, caught in their own Stockholm syndrome, and faced with an industry that is friendlier than and understands them better than ever before, are themselves ever less likely to report adverse events to companies and their unwillingness to report makes it ever harder for them the pick up on hints their patients may offer. There are no training modules within medicine that teach medical students or junior doctors about Stockholm syndrome. There are no courses showing medical students or junior doctors how industry markets to them by encouraging them to stick to the practice of evidence based medicine.

Against this background, treatment related adverse events have become the fourth or perhaps the third depending on the study you go by or even the leading cause of death if we extrapolate from hospital settings to what might be happening in community settings.

The situation has echoes of the joke about the Black Man thrown out of a Church in the American South in the 1960s. Sitting in the dust he asks God how many hundred years will it take till he and his kin gain entrance. A voice from Heaven says My son, I’ve been trying to get in there for 2000 years.

The dilemma faced by patients

This is where the rubber hits the road when it comes to engagement. Part of the problem is doctors are inured to the legal, financial and political implications of what they do. We make a virtue of being value neutral when it comes to treating men injured in combat or women with an incomplete abortion. But now when Churches are scared of pharma (see Fn 1), there is a greater need than ever for the kind of moral courage it once took to stand up to governments and treat enemy combatants or to stand up to churches and treat women, we seem to have lost that kind of courage.

Aside from the loss of courage, we miss how political the simple things we do can be and how our position overwhelms basic humanity.

Take Sylvia for instance who has just been put on doxycycline and become suicidal. She has a real dilemma. Let’s say she works in the mental health field. Does she report this problem to her doctor? The first problem is even if she does work in the system, for her like others entering his consulting room, she is rather like a mouse confronting a cat. He may smile and swish his tail, but still…

It’s like a prisoner confronting a warden. Caught in the zeitgeist, warders like junior doctors are no doubt trained in communication skills these days. They may chat about football results but all the power is on one side. If Sylvia goes to her doctor and he enters into her medical notes that she has been suicidal, this might compromise her future employment prospects. If she wants to work with children in the future, her medical records will be scrutinized and if this comes to light her job prospects may be gone – perhaps without her ever knowing why.

If she tries to engage her doctor on the possibility that this is an adverse event, we find out what patient engagement really means. She is the person who has been through the experience. She may be pretty confident in her judgement. The problem came on after she started the drug and cleared once it stopped.

But he has never seen this before – or perhaps seen but never noticed it before, or had it mentioned to him but never registered it before. And he has 12 years of medical training and many more years of practice. He may look at the datasheet on doxycycline, perhaps even check out some internet sources. He will not find anyone saying doxycycline causes suicide – unless he stumbles onto the RxISK site.

This is a moment of great drama. Sylvia will feel every minute of it, but her doctor will likely not be aware of anything. Unless he enters into the medical record, a clear statement that this might be an adverse event, Sylvia is at risk of legal, financial, insurance and other consequences of an entry that designates her as suicidal – i.e. she has a medical condition- rather than as the victim of a treatment related event.

He will be scared to take her side. He may not think he’s scared. This is the lack of fear that walks on by because others have looked at the issue and if drug companies, regulators and other doctors have not found that doxycycline causes suicide who am I to engage with this unclean woman. Unclean –anything as strange as suicidality will make someone as unclean as any Samaritan woman might have once seemed.

What does Sylvia do next?

The first message is this. Any Sylvia or Sylvain bringing an adverse event to their doctor should do so in the form of a RxISK report. You should hand in the RxISK report first before trying to talk about it. If you talk first and your doctor dismisses you, it will then be difficult to bring the RxISK report up.

But presenting a RxISK report and perhaps indicating this has been sent to the regulator – FDA, HealthCanada, MHRA, EMA, TGA, CARM – puts the interaction on an entirely different footing. Your doctor is now faced with the fact that there is a record of a possible adverse event and if he pays no heed to it and things go wrong he is in a less secure position than he would be in if he records that you became suicidal rather than you had an adverse event.

The more standing up for yourself like this feels like violence or disruptive, the more you are getting to grips with the violence that the system is doing to you. The more awkward it feels, the more you are testing whether lip service to patient engagement is just another way to trick patients into doing as they are told – unless of course your doctor proposes engagement.

If he doesn’t propose, how it works out in practice is that smiling sweetly he will double Sylvia’s dose or recommend something else. Smiling equally sweetly, she will say “of course”, will leave and will not take it.

Patient non-compliance is the drapetomania of the 21st century (Fn 2).

We have a Dream that one day people will rise up and live out the true meaning of this creed: “we hold these truths to be self-evident: that all men are created equal”.

Engagement is traditionally the first step to an enduring relationship.

Does our relationship with our doctor amount to anything? Is it worth fighting for? If worth fighting for, getting a RxISK report on the record offers a Rosa Parks refusal to give up our seat on the bus moment. Everyone who takes a report to a doctor can help establish whether the affable person they are dealing with is in fact able to engage with them. If a doctor is unwilling to accept a RxISK report and put it on their record, your life may not be safe in their hands.

It would be fatal to overlook the urgency of the moment. RxISK repeatedly gets asked whether we know a doctor who lives in someone’s area who takes treatment induced problems seriously. Getting doctors to accept and complete RxISK reports would help all of us generate a HeatMap showing where the eligible doctors are. If we can seize the moment, the others will die out.

_______________________________________________________________________________________

Footnotes

  1. I have recently been disinvited from a Catholic Church  linked meeting on psychotropic drugs and children apparently for using an analogy between child abuse in the Church and pharmacotherapy abuse in clinical care.
  2. Drapetomania was the DSM (-1) name given to the illness that caused slaves to run away from their masters.

RxISK: Research and report prescription drug side effects on RxISK.org.

Search. Report. Contribute.


You and your meds. Give the real story. Get the real story.

Pharmageddon

Pharmaceutical companies have hijacked healthcare in America, and the results are life-threatening.

 

Dr. David Healy documents a riveting and terrifying story that affects us all.

 

University of California Press (2012)

 

Available on Amazon.com

 

Comments

  1. Hello David,

    this is excellent! But I fear the massive mountain of arrogance, already instilled in junior doctors, is quite an obstacle.
    (A long way from the workcamp in Swinford, Co Mayo in 1978. )
    Thank you and be well.
    Sabine

  2. It is hard to get away from doctors who do not smile, who are haughty, arrogant and they know best. They can be rude, discouraging, flippant and disbelieving.
    They can even lie about medication and get away with it because the patient has her doctor but the doctor has levels and levels and levels of people who will support the doctor against the patient.
    It is possible to complain, but the replies can be pretty damning.
    There is no-one who is going to take the side of the patient, no-one.
    I took something similar to a Rxisk report to my doctor after 2003.
    It was the complete box set of the Panorama videos showing the resulting effects of Seroxat withdrawal.
    It got me nowhere. They were taken but, never referred to, nor returned.

    Although Rxisk is vital, if the doctor doesn’t want to listen, the doctor will not listen.
    I have come across this so many times, it is like hitting a brick wall.
    Although, I do like the suggestion that if anything untoward should happen to the patient, then a personal Rxisk report was up their sleeve.
    Can’t argue with that.

    Fourteen months, that was all it was.
    May 2002 to July 2003
    This gross intrusion into my life from a dangerous ssri, Seroxat, and large quantities of Benzodiazepines: Lorazepam, Chlordiazepoxide, Diazepam and 100s of beta-blockers; the Paroxetine syrup and, finally, the introduction of Fluoxetine. A year later than was advised.
    That final introduction of Fluoxetine, after a Glaxosmithkline, Seroxat suicide, the year previously, was something of a conversation stopper and it provided the catalyst for it all to stop.
    July 2003 saw me bin the lot.
    April 2004, I fled my life. The legacy of all drugs given to me had kicked in. The sheer battering of those I trusted to look after me, had also kicked in.
    No-one could take all these drugs and not come out unscathed. Let alone the abuse.
    I almost had to create a new identity.
    I had been forced out of my village and my life by a woman who hectored, pilloried and nearly murdered me. The psycho who could not even be bothered to check on my medication, in his hospital, and four days later, I was nearly dead.

    That was ok…
    What nearly broke me, was home-educating a small child, who was almost catatonic, having lived through all the above.
    That broke my heart.
    This small child, whose brilliant future was ruined….because of me and my total stupidity of accepting Seroxat, accepting Benzos, accepting abuse and total ignorance, and accepting our new, totally broken lives.

    It’s a hard act to follow.

    My gp bullied me into suicide. She became a cold, calculating, potential killer, with no remorse, no guilt, and no conscience. She had no defence. She thought she could mastermind my near demise.

    My doctor and I engaged. We were so luvvy we nearly got married
    I walked her dogs, I gave her hundreds of pounds worth of childrens’ toys, I stayed in her lovely house with her for a week, on the Isle of Bute.
    Stockholm Syndrome.
    I was a prisoner of her death defying mal-practise.

    No home, no money, no dignity, no self-respect, no reputation, all gone.
    My child lost her childhood at nine years old. She was a poor little powerless figure.
    They all brainwashed me, they were all insistent that I was some sort of rabid nutcase. The small village surgery watched me crumble, cave in and not one of them lifted a finger to help.
    And…all this was about drugs, drugs and more drugs. Straight off an ssri and loads and loads of benzos.

    I have acceptance that I will not be as fully functional as I was: chronic fatigue, chronic tinnitus, chronic fright…I deal with it, no more doctors for me.

    Seroxat was forced out of my system, in 2002. More gently, in 2003. I remember every detail …all that, woke me up.
    I suppose living with all this grief having been given a ‘mental disorder’ prognosis in 1999, wrong, means I have my emotions back and so maybe I am almost recovered, I don’t know, all I know is that this whole drug saga was hellish and us, Seroxat Sufferers, have our stories to tell, if anyone is listening….a psycho, was very excited about Seroxat; my tired, aged, cynical, gp, said it was rubbish.
    A recipe for disaster.

    I educated both of them with thoughts of litigation, Panorama tapes, letters to Mind, blogs, blogs and more blogs on the dangers of ssris. Did they listen. Nope.
    “I’m a patient, get me out of here…” All those crawling little creatures covering those contestants in the Australian outback having nothing on Seroxat.
    I won an award for my company from the British Overseas Trade Board, in 1989, but I was so sick off Imipramine that I lost the plaudits, because I threw my company car keys at my boss and took to my bed…….
    In less, than weeks, off Seroxat, ten years later, I was reduced to a schmuck, again… It went on and on and on, by so many, it is a wonder that I did not lose the plot entirely.

    Here, there and everywhere the whole lot of us were braindrained…welcome to life on mars, take a pill at your peril.
    Nice job, Sir Witty A., you nearly put me in a coffin with your absurd idea to see your doctor.
    A nice, neat job, Witty A., well executed.
    Very well done, Witty.
    I saw my doctor probably fifty times in six weeks.
    How difficult was it for an entire medical practice not to understand that simple instruction:
    “Give her Fluoxetine to prevent abrupt discontinuation symptoms from Seroxat.”
    Psycho, 1999.
    Unbelievable, that a gp could not even read.
    My gp was turned into a criminal from Seroxat, her boss was turned into a criminal from Seroxat. She was a canny old bird – she missed it – she found it. I went through all this, we all went through all this.

    It is the horror story of our century:

    “She came off Seroxat, last summer, when she was well, at his suggestion of Fluoxetine. It does not appear that either of these drugs made the slightest difference to her…”
    Clearly not. I was a suicide admittance to a city hospital, six weeks after stopping Seroxat, without Fluoxetine.
    Doctoring 2003

    “I did notice you were not given Fluoxetine”
    Her boss.
    Doctoring 2007

    “I am a very busy man and I have not got time to read your correspondence….”
    Threatening telephone call from Novia Scotia
    About lies and murdering colleagues
    Doctoring 2009

    “We are bringing this matter to a conclusion; the Dental and Doctor Union of Scotland support us”
    Surgery 2010

    “I thought I told you that it was not the job of my colleague to check on medication, when you are admitted to our hospital, on medication given out by a gp, and NHS Highland, support me” (despite your attempt at hanging yourself four days after leaving our hospital)
    Clinical Director 2010

    Breathtaking hypocracy. Who put me on Seroxat. What exactly was his job then???

    What was the point of all this; just what was the point of it all……..

    Do they all think I was born yesterday…….clearly, they do.
    How many heads have to roll, the list is so long.
    Let’s start again…….with Glaxosmithkline, with the MHRA, with NICE, with the EMA filtering down to Argyll & Bute, doctors, nurses, prescribers and to me.

    The real clinical trials are now, today, which is what Rxisk is all about.
    I have experienced the real-life clinical trial and I am not impressed.
    Wish I had been a detective now, took me so long to work it all out…but even working it out still leaves me in the invidious position, of having worked it all out.
    What do I do, where do I go, who am I, where am I…..the loop gets larger……daily.
    A question posed was about prescribers and ssris and benzodiazepines, which group of drugs are better?
    To be perfectly honest, I have no time for either class of drugs – wish I had gone off on holiday, not suffered relentless abuse the like of which I have never experienced in my entire 60 years……and given pills which they knew nothing about.
    They just accepted that ssris and benzos were part of their doctoring culture, so that’s what they dished out…like sheep.
    In my opinion, the only way to turn this scandal around is to publish relentless stories in the press and on the Rxisk website – because it will take decades to retrain the philosophy of ‘give out a pill’ and everything will be alright.
    Well, it isn’t alright, is it?
    Too much carnage…too many deaths….too many drugged up, some with not a hope in hell of ever getting rid of these terrible, terrible drugs.
    They might as well give us heroin and cocaine as give us their little respectable packets which have a ticking time bomb inside……..
    Finally, when I was told I had tardive tachycardia from six months off Seroxat and I wanted a heart check. I got a phone call from the Indian Doctor from an airport somewhere in the UK. He said, I am sorry I forgot to arrange an appointment but I have organised it now.
    When I eventually saw the heart specialist, she told me that she would not be giving me any pills to help because I had swallowed 28 beta-blockers, in the past, and so giving me medication was not to be.
    Seroxat follows me around like a bad smell.

    Professor Healy once said doctors could be a venal bunch.
    Well, it doesn’t get much worse than this.
    You sit back and equate the facts and on you go, what else is there to do.
    Rxisk and it’s patient stories will blow the minds of a lot of people out there.
    Not before time.
    Too late, for some who lost their lives and their parents and relatives suffered anguish beyond acceptability.
    Hearts and Minds…Darts and Fines…..$$$$$$$$$
    Was it worth it. Witty A. Was it worth it……..
    I don’t think so. I really don’t think your career was worthwhile. I really don’t think you deserved your knighthood; I really don’t think you deserve to be a corporate head; I really don’t think you deserve anything other than to sit in a court room and try to persuade that Seroxat does not cause aggression, violence, suicide.
    Paying out billion dollar fines does not mean your company is innocent of fraudulently marketing a flawed product which produces so much grief and carnage.

    It’s difficult to know where to put yourself when your life is not only sabotaged with chronic, unrelenting ssri withdrawal, but to be so mentally beaten up because of it is a staggering case of personal injustice.
    As I read somewhere recently “everyone gets knocked down, but it’s the style with which you get up that’s important”.
    Don’t suppose Wetty thought for a moment that somewhere in the UK, a gp might lie to save her skin because of his drug Seroxat.

    On the receiving end, also, of absurd notions from the MHRA puts the lid totally on it – who else wants to take the lid off it…(please send in your yellow card, we cannot help you) why yellow, why not black or dirty brown…..yellow is daffodils and sunshine and joy….send in a black card because we ignore black box warnings would be more appropriate..

  3. Mark Williams says:

    Dear Dr Healy,

    I agree with the majority of your thoughts on the disparity of power within the doctor-patient relationship. One minor point: I would think the obvious conclusion from the rescindment of the church’s invitation would be that they are not that keen on people bringing up child abuse within the church, rather than seeing it as evidence of an ever broadening reach of big pharma.

  4. Johanna says:

    Just Googled “Lithium and the absence of desire” and was rewarded with the complete version of Virginia Chase Sutton’s amazing poem (http://blr.med.nyu.edu/content/archive/2005/spring/lithium):

    You have no idea what you are giving away.
    Winter’s amnesia is coming.

    It explains a lot about fear, and acquiescence, and why so many patients who are not forced into treatment nonetheless feel trapped. Medications can sap your will, your drive and everything you most value about yourself. They can do this subtly, even when they seem to be “working.” But figuring this out doesn’t come naturally, even to happy people who are put on these pills for back pain or hot flashes. And for people who are depressed, memories of better times can already feel flat and unreal. Meds can make this worse. It’s all too easy, if you work at it, to convince them to let go of their “denial” and realize they have always been ill. Which, alas, is exactly what the modern shrink is trained to do.

    This was brought home to me by two women friends who were both told they had a biological illness requiring lifelong medication. One was always a bit shy, but never suffered from depression or sought psychiatric help until her mid-fifties – when her husband was murdered. The other was first prescribed Paxil at forty, in the midst of a rough divorce, and felt it really helped her get through the crisis. A couple of years later, she wanted to quit – but every time she tried, of course, she felt like hell until she went back on. Every doctor she asked told her this was proof she must have the illness that Paxil was supposed to treat. The worst thing was seeing both these capable, sensible people look back and rewrite the story of their lives to accommodate this demoralizing idea.

    It’s no wonder the average doc is not prepared to hear that “the treatment you have put me on has made me worse, doctor.” Between “mental health awareness” and the whip of unrecognized withdrawal, the patient may never say it even to herself. Reading discussion boards recently, I was shocked to realize how many people’s withdrawal dramas started not with a decision to quit, but with loss of the job and the insurance card. At a time like that, a doctor with samples to give out has power. Do you really want to piss him off?

  5. I would like to say, I find it refreshing, for a person in your profession to question its mechanics. Unfortunately, in the UK mothers have their children removed from them at birth, for having mental health problems on their medical histories. Often problems that have been prolonged, or exasperrated by medication. I was myself prescribed Seroxat as a teenager, as a result of anxiety because of bullying. I was told I had a chemical imbalance, by my G.P. (a theory that has since been disproven) as a result I began to self harm, and for the first time in my life, I DID suffer from depression. Once taking medication, it’s very hard to stop. And often patients don’t realise that the side effects they’re experiencing are a result of medication. Instead they believe it is a result of the ‘illness’ in which they have been diagnosed with.

    I do feel it wrong to label anxiety and depression, as a result of bullying, as mental illness. But especially wrong, to prescribe medication, prior to therapy, or councilling.

    It’s difficult to absorb therapy when you are medicated.

    If you experience side-effects, such as heightened anxiety, or self harm, or major depression, which are possible side effects to many antidepressants (ironically), it is rarely acknowledged on your medical record as to the cause. Peoples medical histories thereafter read as if that person is of a fragile disposition.

    I also think that when people are assessed whilst taking medication, this is flawed too. Because there is an element of detatchment sometimes whilst taking medication. It would be very easy to then label that person with a personality disorder.

    So often campaigns to dispel stigma are raised. But stigma is very much real. Children are actually taken from parents in the UK, by force, into care, and for forced adoption, because of past medical histories and ‘posed risks’. Even if those problems are in that persons past.

    Mental health shouldn’t be considered as ‘manageable’, in every case. It should be acknowledged that recovery is possible, and that should a person overcome their anxiety, or depression, it not always be considered a case of ‘remission’.

    It is easy to exploit those who have been labelled with mental illness.

    Criminal and family courts are filled with perpitrators of abuse, citing victims mental health, even their past mental health, as a means of discrediting them.

    But for parents to have their new born babies, and children removed, because of past problems, is inhumane. Few others countries in the world do it.

    I admire any professional who cares about his patients, and seeks to help them. Far too many people walk into the profession, for financial reasons.

    Your blog is well-written, and makes a good argument!

  6. I agree with the majority of your thoughts on the disparity of power within the doctor-patient relationship. One minor point: I would think the obvious conclusion from the rescindment of the church’s invitation would be that they are not that keen on people bringing up child abuse within the church, rather than seeing it as evidence of an ever broadening reach of big pharma.

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