The United States desperately needs good programs to help people withdraw from neuroleptics, that is, antipsychotic drugs. From all I have seen and heard, there aren’t any -- none at least that can reputably claim to get good results on a fairly consistent basis. Again and again I find myself challenged to envision such a program, and in reply to the challenge I have broken down this hypothetical program into various components, each of which I will explore in turn. I do not believe that any particular withdrawal program needs to have all of these components, though I do see some of them, as I will explain, as vital.
Meanwhile, before delving into the components I want to acknowledge how difficult it is to envision almost any good mental health program in the United States (or any Western country I’ve been to), considering the backwards and often human-rights-denying standards of care that programs, to one degree or other, are required to follow. Nevertheless, I wish to put on my thinking cap anyway.
So, the components:
All is voluntary
To me this is the most important component of all. Forcing people to do anything, even subtly forcing them, undermines independence, creates resentments, and in many cases induces trauma. If a neuroleptic withdrawal program practices force it ends up becoming a mirror image of a forced drugging program. Voluntarism, on the other hand, insures that people withdrawing from drugs are willing participants, guided by their own motivation.
A hopeful but realistic attitude and orientation
From top to bottom an organization needs to hold a hopeful, realistic, experience-based belief in the possibility that people can get off the drugs. Without this attitude and orientation, the work of coming off neuroleptics becomes that much harder. But hope mixed with naiveté can be dangerous. Although naiveté can often be harmless, because many people can and do come off the drugs easily, especially if they’ve only been on them a short time, in other cases naiveté contributes to setting people up for failure. It is simplistic to believe that everyone on heavy psychiatric meds can come off fully if they just taper slowly. That is why a hopeful, “let’s give it a try” attitude must remain bounded by reality.
Careful discussion beforehand of what might happen in the coming off process
Although people’s experiences of coming off neuroleptics vary greatly, I think it’s a good idea to let people know the range of these experiences, including what might (or might not) happen to them, before they jump into the process. I find it worth explaining about withdrawal upfront, letting people know that in some cases things might feel worse for them before they feel better. I also find it worth acknowledging that some people who have successfully withdrawn require a long time post-neuroleptics to feel they have returned to full health, and that much of this can come from lingering effects of the neuroleptics themselves. Although I would strongly wish to avoid inducing a nocebo effect in people, that is, inducing harmful effects in them psychologically just by presenting worst case scenario possibilities, I still think it’s vital to put the best, most realistic information at their disposal so they can most actively engage in discussion about the process they’re entering and make the most informed choices possible. (I discuss this more in the section on “Advanced directives.”)
Good support from others who have come off
When we face life’s rough road, it really helps to have others who have already walked that path to lend an ear, share their experience, be a cheerleader, be a support, be a beacon of light, and sometimes offer tough love. Also, a person who has been there can make an excellent advocate, especially when those coming off neuroleptics find themselves losing hope and energy. And finally, programs themselves get a huge boost of invigoration from the simple presence of people who have successfully come out the other side of neuroleptic withdrawal. Their credibility, won by personal experience, goes a long way.
Gather detailed information from those who have tried coming off
Hand in glove with the previous two sections, I believe a good program, in order to really be as systematically useful as possible, should gather a broad amount of detailed information from those who have tried withdrawing from neuroleptics, regardless of outcome, and learn from their experience. Because helping people withdraw from neuroleptics in a systematic way is largely unexplored territory, the real experience of those who have tried it is vital for both building and making use of a knowledge base.
Too many people I have known have had the healthy routines of their lives destroyed by neuroleptics. And many had shaky routines before they even got on neuroleptics. Building or rebuilding these routines can be one key to getting off the drugs. Part of these healthy routines can be eating meals at regular times, going to sleep at regular times, waking up at regular times, having emotionally and intellectually nourishing activities to look forward to at regular times, avoiding caffeine and super-stimulating activities in the evening, and having fun things to do at expected times. Having good things to look forward to in one’s day and one’s week can make it all the more easy to wake up, get out of bed, and get moving when one’s inner world or physical world may be screaming for the opposite. Also, routines give life a greater sense of value and purpose. Without routines it’s easy to get stuck in a big rut, which is something many people coming off neuroleptics cannot afford. One program that I love that encapsulates the idea of healthy routines is the Family Care Foundation in Sweden. People in their program live with a family, many times a farm family in the Swedish countryside, and, if all goes well, they become part of the family. Rather than being pressed into artificial institutional routines, which many people (myself included) find insulting, people in this Swedish program want to participate in the regular routines of family life -- because it feels good.
Healthy alternative activities
I think it’s great when programs offer alternative activities for people coming off neuroleptics, such as (but not limited to) yoga, meditation, exercise, dance, acupuncture, massage, volunteering, discussion groups, gardening, writing groups, journaling groups, 12-step groups, hiking groups, adventure groups, nature groups… The list can go on and on… Also, I would like to add working for money into this section. For many people there is nothing more inspiring than earning one’s own keep, even if it can add stress for some on government disability, as it can put them at risk of losing their benefits, including their health insurance.
Consider having an experienced psychiatrist on staff
Although there is a credible study (the UK’s MIND study) showing that people are just as likely to get off psych drugs without a psychiatrist as with one, a good psychiatrist can at times be invaluable. The reason I think the MIND study is valid, however, is that I would bet money that most of the psychiatrists whom the people in the study saw were like the far majority of psychiatrists I have met: not well-versed in the ins and outs of neuroleptic withdrawal.
An experienced psychiatrist knows about the science of rebound psychosis, knows all about tapering, has a good sense of how fast and how slow to try going, knows which drugs to suggest coming off first, knows replacement drugs to make the coming off process easier (such as certain benzos, short-term or as-needed, which some people have found helpful), has a lot of experience of seeing others through the process, and isn’t arrogant or power-hungry. An experienced psychiatrist is also a great listener and has a strong sense of intuition -- and the highest degree of respect for the person withdrawing, and for their autonomy. An experienced psychiatrist also knows about doing good medical work-ups, knows about testing for toxicity levels of various drugs, knows about nutritional supplements, knows about potential organic causes for psychiatric conditions, and understands potential iatrogenic effects of the drugs themselves. Sadly, such psychiatrists are extremely rare. But some do exist...
A ton of support
From what I have observed, many people coming off neuroleptics need a lot of support: far more than we often recognize. The process can be literally hell for many people, both physically and emotionally, and it’s incredibly helpful to have allies around who are compassionate, nonjudgmental, flexible, and respectful -- and, equally importantly, who know when to back off and give people their space. A lot of the people I know who successfully got off neuroleptics had close friends or family to support who filled this role, sometimes 24/7. Thus, it really helps if a program can provide a sort of surrogate family or friendship network for people. But I would never expect a selfless “perfection” from a support system. After all, supportive relationships have to be bound by some sort of limits. Friends and allies can only give so much, and I think it’s helpful for people coming off neuroleptics to know where these limits are. The key here is having supporters who are not selfless, but instead have good boundaries. This is the key to respect.
Support for the supporters
Being there for people who are coming off neuroleptics can be exhausting. Lots of people in support roles burn out. Many people who are in and out of the psychiatric system and have been on and off neuroleptics have become alienated, sometimes permanently, from past allies. Sometimes the pressure was just too great on the allies. For that reason I find it vital that the people who are operating as primary supporters for people coming off neuroleptics also have their own support systems. Again I give a nod to the Family Care Foundation in Sweden. The primary supporters of those coming off their drugs, the surrogate family homes, need their own support, and so they have a supervisor assigned to them -- a family therapist who is experienced, respectful, caring, and available -- whom they can lean on and bounce feelings and ideas off of not just when the going gets rough, but all the time. Many of these family homes have told me that had they not had this supervisor they simply could not have handled the work. It would have been too overwhelming and they would have quit. But I want to make clear here that I do not think that any of these supporters need be professional. In many cases I think non-professional support can be even better.
Although a lot of people who have ended up on neuroleptics resist the idea of going to therapy, not just because therapists are so commonly sub-par in quality but also because therapy is often pushed forcibly, good therapy has proven very helpful to many people coming off drugs. Good therapy can offer a safe space to process feelings that bubble up, or even burst up, during neuroleptic withdrawal. But good therapy for people coming off neuroleptics is very rare. Most therapists that I know have no clue how to be useful here, and instead just prove harmful. Often they mistake common problems of coming off the drugs with problems that they feel require a referral to a psychiatrist for more drugs! In other cases therapists fear their clients or become terrified of clients’ feelings, and also lack insight and empathy into clients’ situations.
A good therapist, on the other hand, empathizes. A good therapist listens well and cares. A good therapist is not afraid to challenge clients, sometimes bluntly, if they are acting or thinking in self-undermining ways. A good therapist is emotionally strong, yet vulnerable all the while. A good therapist maintains utter confidentiality. A good therapist strives to earn his or her clients’ trust, but knows that this takes time. And a good therapist does everything in his or her creative power to help people who want to come off the drugs get off them and stay off them long-term -- and stay out of the hospital.
Also, although this goes without saying, a good therapist knows that all good therapy must be voluntary. Otherwise it’s tainted from the beginning.
Basic community rules
Any good program must have rules to protect its members. The main rule I see involves maintaining safety. Program members, be they participants or workers, have the right to feel safe -- both physically and emotionally. Thus, violence and threats are not acceptable. Nor is sexual harassment.
But sometimes these matters fall into a gray area, and for this reason a program must have a healthy means for conflict resolution, as a community, as soon as problems arise. Meanwhile, another similar area that often necessitates community rules involves illicit drug and alcohol use. Some programs have a zero-tolerance policy here, yet others are not so strict. The key that I see is protecting the safety and harmony of the community -- and the healing paths of its members. Since every community is different, and one community might be different at different times, I prefer a flexible, as opposed to a one-sized-fits-all, approach toward developing community rules. But I also try to remember that all of life has rules. Society and interpersonal relationships have rules regarding what is acceptable, and I find it important that a program, to some degree, reflect this.
Safe, boundaried community meetings offer people a chance not just to share with their fellow community members what’s going on inside them but to get structured, respectful feedback and to process what’s happening in their interactions with others. For so many people, neuroleptics skew their relationships with others, often making it difficult to have solid interpersonal footing or confidence. Similarly, coming off neuroleptics can shake people’s interpersonal confidence. Also, many who end up on neuroleptics experienced interpersonal difficulties before they got on the drugs. Thus, anything that offers people the possibility of building or regaining their interpersonal confidence, and building or regaining it in a safe, open, nurturing, authentic environment, wins my vote.
Free or low-cost
Aside from Soteria-Alaska, which isn’t really even geared for neuroleptic withdrawal, I don’t know a single free or low-cost program for voluntary adults in the United States that even attempts neuroleptic drug withdrawal. Good neuroleptic programs should be available to all who need it, without regard for their ability to pay. It’s stressful enough to come off neuroleptics without having to worry about going into debt or having your parents or other relatives go into debt for you.
As it stands, some of the American programs I know that do offer a neuroleptic withdrawal component are funded largely by adult clients’ wealthy or upper middle class parents. I also know parents who have mortgaged their homes or liquidated their inheritances to finance unsuccessful neuroleptic withdrawal. I have also seen cases where drug withdrawal is going well but parents run out of funds mid-stream -- and have to pull their adult children from the program. This can be devastating for everyone. Much better to have finances be a non-issue in the withdrawal process.
Transparency about success and failure rates
I feel a good neuroleptic withdrawal program should share honestly about its rate of success and failure to give prospective clients an opportunity to make more informed choices. I know few, if any, programs -- or therapists -- that are really transparent in this regard. And some, from what I’ve seen, seem to be purposefully opaque, because this helps them stay in business. And I have seen other programs that I suspect are simply dishonest: they claim good rates of success with neuroleptic withdrawal yet present no evidence whatsoever.
When people come off neuroleptics things sometimes get ugly, not the least reason being the damage, hopefully temporary, the drugs have done to their brains. Sometimes people can get violent or threatening and sometimes people can present a danger to themselves. A good program strives to avoid these situations whenever possible, but sometimes they may be unavoidable. I have seen many programs handle these situations poorly, with staff members pressing the proverbial panic button before other options have been explored, let alone discussed in advance.
The end result, all too often, is more trauma heaped on already traumatized people. One potential solution for this is that each person, before they enter a program, lead the way in creating an advanced directive for himself or herself. Although I noted earlier that I have no desire to induce a nocebo effect and scare people into thinking that horrible things will happen to them when they come off the drugs, I think it’s vital that people know the range of possibilities of what could happen as they come off the drugs, and then have the primary say in what they want to happen to them in such cases. Would they want to be hospitalized under certain circumstances, or not? Would they ever want to be physically restrained, and if so, how? Would they want to have certain doses of certain drugs raised, if only temporarily? Do they have a different plan? What would they like to happen if they stopped sleeping for a week and lost their rational ability to communicate?
I think people and programs need to come up with rock-solid plans, voluntarily and mutually agreed upon, for how to handle and move through these situations, so no one ends up with the rug pulled out from under them. Meanwhile, if people and programs cannot come up with mutual agreements about these things then I take this as a sign that they shouldn’t end up working together, and that the person should seek, or try to create, other alternatives for drug withdrawal.
However, I am not totally on board with traditional advance directives, because I could still so easily see them being used to take away a person’s rights when they are in a vulnerable position. What if a person later disagrees with his or her advance directive? One possibility here is that a person have the option of canceling the advance directive at any point, no questions asked, on the spot -- and simply leave the program voluntarily. I think anyone should be allowed to leave a program at any time, advance directive notwithstanding. For me, the key, again, is that every program for neuroleptic withdrawal needs to be utterly voluntary.
Dispatches From the Road: A filmmaker and former psychotherapist tells about making his three documentaries about recovery from "madness," and about meeting with peer groups and directors of innovative programs throughout North America and Europe.