'It is an art of no little importance to administer medicines properly; but it is an art of much greater and more difficult acquisition to know when to suspend or altogether omit them.'
Philippe Pinel 1745-1826
This is not a book that questions the validity or effectiveness of medicines used for mental health conditions. It is a guide to the deprescribing of psychotropic medication in situations where deprescribing is, on balance, agreed to be a better option than continued prescribing. The agreement here is between prescriber and patient. The core tenet of this text is that decisions are made jointly in the patient's best interest.
Patients have expressed dissatisfaction - and sometimes outrage - with available medical assistance for stopping psychiatric medications. This has led to many tens of thousands of patients seeking advice from online peer-support forums. When surveyed, these patients report that their doctors were often unhelpful either because they recommended tapering too quickly or because they were not familiar enough with withdrawal effects to provide helpful advice.1 Some doctors are apparently still suggesting that antidepressants do not cause withdrawal symptoms. The main requests from these patients are that health professionals are sufficiently well informed to provide personalised, flexible reduction plans and that access is provided to smaller doses to facilitate tapering (either liquid versions of medication, or specially compounded smaller dose tablets or capsules).1 We hope this textbook will contribute to a broader understanding of these issues, a greater expertise in helping patients and a better outcome for all.
In writing this textbook we took on what some might consider an impossible task. Safely stopping psychiatric medications is not simply a matter of outlining a regimen of reducing doses for patients to follow. There are too many aspects of the drug, the individual and their lives that come into play such that adjustments inevitably need to be made, often involving a certain amount of trial and error. Yet the most common request we receive from patients and clinicians is to provide tapering schedules to guide reductions. It can be daunting to begin a journey without a map to follow. So in this book we have tried to balance specific guidance with flexibility, offering different routes to reducing doses, whilst trying to accommodate the complexity required for adjusting the course for an individual. We have also tried to acknowledge the tenets of other guidance in this field. The advice given here is, for example, largely consistent with the UK NICE guidelines on this topic, but we aimed to provide greater detail on how to implement the broad principles outlined.
Balancing competing priorities has proved difficult. On the one hand, patients often report that they are tapered off psychiatric drugs too quickly, and on the other, patients should not be exposed for an unnecessarily long time to a drug that could be stopped more quickly. Added to this is the awareness that there is great variation from one person to another - and that we have little to guide us in predicting how an individual will react. We have therefore attempted to accommodate a wide variety of circumstances with further instructions on how to make changes from the suggested regimens.
We wrote this book partly because of our own difficulties in coming off various psychiatric drugs. Our main motivation has been that, by clarifying what is known about safe deprescribing and applying that to practice, we will spare others some of the difficult experiences we have endured. It is perhaps the book that we wished our prescribers had possessed.
It is sobering to consider that had we not experienced stopping medication first-hand we would have found it hard to believe the accounts of patients, which can seem almost fantastical in the variety and severity of symptoms (what one experienced practitioner in this field has called 'the unbelievability factor'2). We hope this book will help clinicians develop a greater appreciation for the difficulties some patients experience when trying to stop psychotropic medication.
We recognise that much of the guidance included in this book requires confirmation and clarification from further research but we also appreciate that people are already reducing and stopping their medication and that we should not let the perfect be the enemy of the good. The main messages of the textbook could be summed up in a few words: go slowly, at a rate the patient can tolerate and proceed even more cautiously for the last few milligrams, which are often the hardest to stop.
One major barrier for prescribers we have observed is a reluctance to prescribe liquid versions of drugs, compounded medication or other unlicensed (but widely used) methods to make up the smaller doses of medication necessary for optimal tapering. Often this is for good reasons like cost and complexity. However, minute doses are likely to be required for a substantial proportion of long-term users if they are to stop their medication safely. Many patients report that once a clinician has traversed this psychological moat the process of tapering off their medication becomes substantially easier.
We have also sought to empower patients in the process of coming off their drugs. Patient autonomy is increasingly highlighted in medicine (and psychiatry more widely), but in the area of deprescribing where relatively little is known and where patient experience is so central, it is even more important. We have observed that patients soon become the experts in understanding what rate they can tolerate in reducing their medications and we hope that clinicians will support patients in this process. An old adage from another area of medicine - 'Pain is what the patient says it is' - might be borrowed here. Withdrawal is what the patient says it is.
On this topic, we have also included in this textbook the voices of patient experts and advocates who have been instrumental in drawing attention to the problems many patients face in withdrawal, and in working out innovative approaches to minimise risks. Some of these patient experts have medical training, and some have published research in academic journals. Their experience of being both patients and, in some cases, clinicians brings unique insight into the process.
When discussing withdrawal syndromes from psychiatric drugs, the concepts of addiction or misuse and abuse often arise. However, we have emphasised throughout this textbook that physical dependence is a predictable physiological response to chronic use of psychotropic medication. This inevitably and predictably leads to a withdrawal syndrome on stopping or reducing the dose and does not indicate addiction, misuse or abuse.
This book has been written so that it may be read from cover to cover but it is also designed to be sampled as needed by the busy clinician. To this end, there are 'quick start' guides for tapering specific drugs that are designed to be intelligible largely independent of the rest of the book. The chapters on individual drug classes outline the issues specific to each class but also to tapering in general, given some commonalities. This deliberate design has necessitated some degree of repetition, the reasons for which we hope the reader will understand.
We would like to pay special tribute to Adele Framer for sharing the wisdom gained from years of supporting patients to safely stop antidepressants and other psychiatric drugs in peer-led forums, combining lived experience with academic knowledge. Also, Nicole Lamberson and Christy Huff, medical professionals with lived experience, for contributing their long experience in helping people to safely stop benzodiazepines via peer-led forums. We would also like to thank Bryan Shapiro for his help putting together the section on gabapentinoids, and Andrea Atri Mizrahi and Ivana Clark for their tireless efforts in assembling and checking for accuracy substantial parts of the drug-specific guidance. Lastly we would like to record our appreciation for the support of Robin Murray in our work in the field of deprescribing.
Mark Horowitz
David Taylor
London
November 2023
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