Wednesday, I was writing about the NZ survey of patients’ experience taking antidepressants [a surprising finding…] titled Adverse emotional and interpersonal effects reported by 1829 New Zealanders while taking antidepressants. From the title and references, one can assume that the authors were honing in on the more subtle and understudied "emotional and interpersonal effects" of these drugs, so widely prescribed and taken, often for long periods of time. There’s a paradox in the study. In spite of the heavy side effect burden reported by the respondents, they took them for a long time and reported positively on the results – at least more positively than many might’ve expected. Several commenters thought that was a placebo effect of some kind rather than an outcome from the drugs themselves. I’m not so sure I know the answer to that, but I was intrigued by the results. I emailed the authors, John Read, Claire Cartwright, and Kerry Gibson, at the University of Auckland and asked if we could take a look at their questionnaire, and had a pleasant exchange with Dr. Read the same day.
But as for the questionnaire itself, again it seemed straightforward. The paper well documents the heavy "emotional and interpersonal" side effect burden of these drugs and made it clear that the way to find out these things is simple – ask the patients who take them. The survey confirmed the high incidence of suicidal feelings and aggressiveness [attributed to the antidepressants, not the depression itself], and higher incidence of these symptoms in younger patients. But in spite of these negative findings, over half of the respondents had continued taking the medications for over three years, and their general report on the quality of life was surprisingly positive:
The chart on the right is in response to this question: While taking anti-depressants my quality of life was: Greatly improved… Slightly improved… Unchanged… Slightly worse… A lot worse… Those of us who follow this story on the use of antidepressantss in modern psychiatry and the dramatic prescription rate over the last twenty-five years come to the table from a variety of directions. I got here when I left my cloistered practice and discovered how many people were on such bizarre combinations of drugs, and I stayed when I began to look at the psychopharmacology literature and saw how it had been invaded [and corrupted] by industry and complicit KOLs. Others are former patients who suffered unannounced side effects or unacknowledged withdrawal symptoms. Some were offended by the "medicalization" of human mental life and the assumptions about underlying biology. That’s only a few. But no matter how we got here or where we point our fingers, we share an outrage at the takover by PHARMA with the complicity of many higher-ups in psychiatry, the corruption and commercialization, and the resulting rampant prescription of psychiatric medications in both psychiatry and primary care. So a report like this can be a Rorschach for any of us to project our preconceptions onto – mine included.
I had several thoughts about the survey. First, I thought it was a great idea. While it lacks the scientific rigor of a randomized, placebo controlled, double-blind clinical trial, it goes straight to the heart of the matter – What do the patients say? It’s like David Healy’s Rxisk web site which I also like. We ought to be doing this kind of survey on all the medications, over and over. It’s what both prescribers and patients alike need to know. By listing the side effects explicitly, the authors bias may show, but how else are we going to find out if we don’t ask? And frankly, their findings with a few exceptions are what I might have predicted having prescribed these medications in my new post-retirement role as a "clinic doc" in a charity clinic staffed by volunteers. But the article speaks to some open questions I have in my own mind working in that setting. These are my speculations, not those of the authors.
I would never qualify as a bio-bio-bio psychiatrist. In my natural state, I’d clearly fit more into the bio·psycho·social category. So I’ve had to retool for the clinic where I work [and, for that matter, for this blog as well]. I’m able to use more of my psycho· skills there than I would’ve thought, but in an abbreviated and modified way. My social· has been flexed beyond my imagination, since much of what I do a lot of is classic social work. And the bio· is a major player. I take my comfort in doing it rationally, which isn’t what my colleagues and the local docs do, and people on meds are definitely bludgeoned with my warnings and instructions. But I have to compromise more than I’d like, because the patients just go elsewhere and get medicated up to the hilt. But there are some observations from the clinic that relate to this survey.
There’s an enormous pressure to medicate coming from the patients. I expected it from the "druggies" that haunt such clinics, but I was surprised to find that it was from almost all comers. As I mentioned, most of my practice before was with treatment failures, people who had already given up on a medicine cure/treatment. The other thing is that the patients in the clinic come in thinking that all I want to hear about is their symptoms and the intensity thereof. I have to ask, even prod, to hear about their lives. I wasn’t used to that. And there’s something else that seemed peculiar to me. There’s the frequent refrain that the drugs are not working "enough" or have "stopped" working. But suggesting discontinuing altogether is not well received, and best mentioned after you get to know the patient well enough to be trusted. So it’s not just that they expect medications, they want them – even the patients dissatisfied with the results. I think that must be why each new drug that comes along has a waiting following. As long as I’m blathering about odd things, I was taught and actually think of most depressions as time limited, but the patients in the clinic don’t seem to think that way. Plenty stop them on their own all along the way, but a surprising number see them as an ongoing need. And it’s certainly not because I push that idea on them. Quite the opposite.
I can generate psychological and conspiracy theories galore about all of these things – a symbolic attachment, placebo effects, acknowledgement, etc. and have seen examples of each new theory, but what I really think is that the paradox in this NZ survey is accurate – many patients are enduring the downside in return for an upside that’s hard to quantify, one that shows up in the answer to "my quality of life." Recently, a friend who was struggling with the task of taking care of a new incapacitating illness in her husband had been put on an antidepressant. She said something I’ve heard many times, "Yeah, it really helped. Nothing was different, but I just didn’t care as much." And she was visibly "better." After a couple of months, she stopped it and seems fine. I believe her, and the patients in the clinic, and the results of this survey. There’s a real reason that many take antidepressants, and keep taking them, in spite of the adverse effect burden. That said, there are many that take them because they’ll take anything just in the hope of feeling better, even if they don’t work. And there are too many that take them just because they’ve been prescribed.
At a dinner party a few years back, after the meal, I was chatting privately with an acquaintance. In an attempt to make some conversation, I asked how things were going. She said that it was a bad time for her with the recent breakup of a romantic relationship and an adult child that was going through some significant emotional problems. Half jokingly I told her she’d better not tell her doctor about her troubles or else she might end up being prescribed an antidepressant. What she said next floored me. She then told me that she was already taking Prozac and had been for 15 years. I asked curiously, if she had ever thought about coming off Prozac after such a long time. She said that a few years past she did try to stop but had gone “wonky”, feeling quite horrible, and went on to say that her doctor then advised that she could not stop the drug and would be on it for the rest of her life to correct a chemical imbalance in her brain. I didn’t say anything but only asked why she was first prescribed Prozac so many years ago. She told me that it was because of immense grief due to the sudden death of an older sibling that she was very close to. I just listened and did not say anything other than “I’m sorry to hear about that”.
From my experience, I think this lady is quite typical of the many people who get stuck on these drugs due to the unavoidable hardships of life.
We as a society have digressed to a point where the sense of entitlement permeates ever aspect of our lives. Young people graduate from college and demand large salaries, large houses, with very few work hours, because they are entitled. After all they received a gold cup for participating, and nobody was a winner, everybody was “special.”
They got this idea from their parents. Boomers who have been catered to all their lives and now find they are retiring with little or no money. Troubling is speaking with someone on their mid-fifties who is lamenting their lot in life after they have received an education, but has failed at their professional careers due to a lack of effort.
Lower income individuals speak endlessly about a lack of opportunity and education, but when questioned you find they turned down both. Culture does play a role, and yes some people do seem to never get a break.
Enter pharma with its soothing message of “it’s not your fault and we have a pill for that.” The result is a willingness to blame others and take the pill, even if the pill does not work because then you are special.
Google allows us to define who we are in a way that reinforces our self defined persona and helps our victimhood.
The result is we as a society have to be “fair.” Fair means being understanding, not labeling, and ultimately financially responsible for those who borrowed endlessly against their house and drove the biggest SUV because that is what they were told to do.
Pharma understands the drugs do not have to work; people only have to think they work, and that makes them “special.”
Steve Lucas
Why do people have serious side effects yet feel the drugs are helping them? Basic psychology. The patients are told the drugs work. They read about it in the media. They hear that side effects can be bad but naturally rationalize that if the side effects are so bad the drugs must be really good – otherwise they wouldn’t be on the market. Once they begin taking, the side effects serve as confirmation that the drugs are working. The patient becomes invested in the drugs. If a drug is destroying your sex life but everyone has told you the drugs work then your mind will rationalize the sacrifice because to not rationalize it and reinforce the belief in the drugs requires A) tossing aside your trust in medicine and doctors, and B) admitting that you are undergoing hardship for nothing. Both of those things are extremely difficult for a person to do.
You see this type of thing in a lot of places. I have personally seen it with the controversial issue of bed rest during pregnancy. I know someone who was put on bed rest when she was having early contractions. It was a horrendous hell for her. Everything worked out in the end, though. But researchers have been banging the drum for years that bed rest is harmful, does not prevent pre-term labor, and should not be prescribed. There has never been any evidence to support it. They finally published a paper in the past year calling it malpractice because they are exasperated that doctors will not stop prescribing it.
When I found out my friend had been on bed rest, I mentioned that there was nothing to support bed rest and that her doctor put her and her baby at risk. She blew up like I had never seen before, telling me she trusted her doctors, yada yada yada. From her reaction I could tell that she was emotionally invested in the idea that the bed rest was helpful because it was such a difficult experience for her.
I see the same issue with people taking antidepressants.
My issue with the NZ study is that it seems to treat the use of all/any antidepressants as a unitary event. For example, it asks for side effect and benefits for antidepressant use without separating responses to particular antidepressants. (For this reason, I think RXisk is a better source of information as it is specific to particular medications.)
In attempting to answer the questions from my own experience… I can discuss how I was originally started on fluoxetine and can tell of its awful experience for me, due to many side effects (particularly akathesia and dose-dependent suicidal ideation). I can also answer other questions such as “usefulness”, “are you still on them” &c. referencing venlafaxine (which I still take). However there are other side effects: sexual dysfunction, withdrawal, mild hypertension.
Many patients trial many different antidepressants and each person has idiosyncratic responses to each – both effectiveness and side effects. But the survey doesn’t distinguish between different medications used in an individual’s experience of medication.
Maybe that has something to do with the different data on side effect burden, level of depression and response rates?
PaulRobert,
I like Rxisk too. But by my reading of the NZ paper, they addressed your complaint:
Situational “depression,” for which the majority of the respondents were no doubt medicated because that’s what’s prevalent in prescribing practices, tends to resolve on its own in months when unmedicated.
This confounds all self-reports of antidepressant efficacy.
So, they may be accurately reporting when they say they felt better after taking the drug.
I also agree strongly with Ryan about cognitive dissonance having a role in convincing people the drugs are worth the side effects.
As to why people ask for these drugs — the cultures of developed nations have been permeated for 20 years by propaganda that these are miracle drugs with little downside. (Not to mention the advertising in the US and New Zealand.) Why wouldn’t people be asking for them?
Yes, some people do feel the effects of the psychotropics, and welcome the stimulation, exhilaration, or numbing they provide. In this way, antidepressants truly do “work” — just like street drugs.